Handbook of Social Sciences and Global Public Health 3031251091, 9783031251092
This handbook highlights the relevance of the social sciences in global public health and their significantly crucial ro
172 20 34MB
English Pages 2286 [2224] Year 2023
Preface
Contents
About the Editor
About the Contributors
Contributors
Part I: Introduction
The Essence of Social Sciences in Global Public Health: An Introduction
1 Introduction
2 The Social Sciences
3 Social Science and Global Health
4 Global Health Inequality and Social Determinants of Health
5 About This Handbook
6 Conclusion and Future Directions
References
Part II: Social Sciences and Health Disciplines
Medical Sociology
1 Introduction
1.1 Why Was the Author Drawn to Study and Subsequently Undertake Research in Medical Sociology?: Positioning the Author Self
2 Defining Medical Sociology
3 Similarities Between Social Epidemiology and Medical Sociology
4 What Is the ``Social´´ in Medical Sociology?
5 Is There a Role for ``Lay Theory´´ in Medical Sociology?
6 Case Study On Medical Sociological Research On ``Trust In Healthcare´´
7 Conclusion and Future Directions
8 Cross-References
References
Medical Anthropology
1 Introduction
2 Kuru, Kinship, and Medical Anthropology
3 Medical Anthropology and Epidemics
4 Medical Anthropology and COVID-19
5 Paying Attention to the Social Determinants of COVID-19
6 The Global Body: Renting a Womb in Ukraine
7 Anthropological Methods
7.1 Participant Observation
7.2 Rapid Ethnographic Methods
7.3 Applying Anthropology in Disease Control
8 Conclusions and Future Directions
References
Social Work
1 Introduction
2 Antecedent Knowledge
3 Indigenous and Global Knowledge
4 Other Areas of Focus
5 Conclusion and Future Directions
References
Social Epidemiology and Its Contribution to Global Public Health
1 Introduction
2 What Is Social Epidemiology?
3 Globalization and Its Implications for Global Public Health and Health Inequalities
4 Impacts of Globalization on the World of Work and Workers´ Health
5 Case Study: Evaluating the Impact of Organizational Change on Workers´ Health
5.1 Background
5.2 Measurements of Exposure: Organizational Change (OC)
5.3 Measurements of Health Outcomes
5.4 Effects of OC on Health
6 Conclusion and Future Directions
7 Cross-References
References
Global Health
1 Introduction
2 Significant Events That Have Promoted the Development of Global Public Health
2.1 Infectious Diseases
2.2 International Drugs Trade and Public Health
2.3 Occupational Safety and Health
2.4 Transboundary Water and Air Pollution
3 Modern Politics and Global Health
4 History of Global Public Health as a Concept
4.1 Development of Global Health
4.2 The Introduction of Millennium Development Goals and Sustainable Development Goals
4.2.1 Millennium Development Goals and Global Health (2000-2015)
4.2.2 Sustainable Development Goals (SDGs) and Global Health (2015-2030)
5 The ``Global´´ Part of Global Health
5.1 Measuring Progress in Global Health
5.1.1 Life Expectancy
5.1.2 Child Mortality
5.1.3 Burden of Disease
5.2 Five Metaphors About Global Health and Global Health Policy: Stopped Here
5.3 Global Health as Foreign Policy
5.4 Global Health as Security
5.5 Global Health as Charity
5.6 Global Health as Investment
6 Global Health as Public Health
6.1 Disparities in Service and Access
6.2 Foreign Health Aid
6.3 Efficacy of Distributing Aid to Regional Areas
6.4 What Is Corruption?
6.5 Health Ethics
6.6 Healthcare Finance and Economics
7 Conclusion and Future Directions
8 Cross-References
References
Critical Public Health
1 Introduction
2 What Is ``Critical´´ About Critical Public Health?
3 What Principles and Values Constitute a Critical Public Health?
4 Why Might One Want to Be Critical About Public Health?
5 How Might One Come to Be Critical About Public Health?
6 Where Can a Critical Public Health Be Found?
7 Conclusion and Future Directions
References
Health Promotion Practice
1 Introduction
2 The Art of Health Promotion Practice
2.1 Settings in Health Promotion Practice
2.2 Collaboration in Health Promotion Practice
2.3 Communication in Health Promotion Practice
2.4 Evaluation in Health Promotion Practice
2.5 Leadership in Health Promotion Practice
2.6 Advocacy in Health Promotion Practice
2.7 Politics in Health Promotion Practice
3 The Science of Health Promotion Practice
3.1 Integrated Learning in Health Promotion Practice
3.2 Critical Reflexivity in Health Promotion Practice
3.3 Health Determinants in Health Promotion Practice
3.4 Knowledge Translation in Health Promotion Practice
3.5 Co-Design in Health Promotion Practice
3.6 Evidence and Ethics in Health Promotion Practice
4 Conclusion and Future Direction
References
Community Nursing and Global Health
1 Introduction
2 Nursing and Global Health
2.1 Community Nursing
2.2 Nurse Practitioners (Advanced Nursing Practice)
2.3 Global Issues
2.4 Use of Community Nursing in Global Public Health
3 Conclusions and Future Directions
References
Primary Health Care
1 Introduction
1.1 Defining Primary Health Care
1.2 Focusing on PHC
1.3 The Importance of PHC in the Current Context
2 Components of PHC
2.1 Integrated Health Services
2.1.1 Primary Care
2.1.2 Population-Based Services
2.2 Multi-Sectoral Policies and Action
2.3 Empowered People and Communities
3 PHC in Action
3.1 Strategic Levers
3.1.1 Political Commitment and Leadership
3.1.2 Governance and Policy Formulation
3.1.3 Funding and Resource Allocation
3.1.4 Engagement of Communities and Other Stakeholders
3.2 Operational Levers
3.2.1 Models of Care
3.2.2 The PHC Workforce
3.2.3 Physical Infrastructure
3.2.4 Medicines, Products, and Technologies
3.2.5 Engagement with Private Sector Providers
3.2.6 Purchasing and Payment Systems
3.2.7 Digital Technologies
3.2.8 Systems for Improving Quality of Care
3.2.9 PHC-Oriented Research
3.2.10 Monitoring and Evaluation
4 Conclusion and Future Directions
References
Health and Medical Humanities in Global Health: From the Anglocentric to the Anthropocene
1 Introduction
2 What Are the Health and Medical Humanities
3 Troubling the Territory: Historical Connections Between the Health and Medical Humanities and Global Health
3.1 ``First Wave´´: An Anglocentric, Medical Paradigm
3.2 The Health Humanities and the Critical Medical Humanities
3.3 The Health and Medical Humanities Beyond the Anglosphere
4 Acclimatization: Connecting the Health and (Critical) Medical Humanities to Global Health
5 How Might the Health and Medical Humanities Become Global? A World Universities Network Contribution
6 Horizons: Toward the Future Global Health Humanities
6.1 Core Components of the Health Humanities for Global Health
6.2 Decolonizing Health and Medicine
7 Conclusion and Future Directions
8 Cross-References
References
Traditional Medicine and Global Public Health
1 Introduction
2 Traditional Medicine and Everyday Practices
3 Global Flows of Traditional Medicine
4 Transformations and Reshapings of Traditional Medicine
5 Traditional Medicine and Biomedicine
6 Resorting to Traditional Medicine
7 Traditional Medicines Against COVID-19
8 Conclusion and Future Direction
References
Embedding Social Medicine in the Health Professions Curriculum
1 Introduction
2 Models of the Curriculum
2.1 Institutional-Led Models
2.1.1 Interventions at Postgraduate Level
Advocacy Model
Underserved Medicine and Public Health Program
Engel´s Biopsychosocial Model
Healing Through History (HTH)
Trigger-Based Model in Ambulatory Setting
Psychosocial Curriculum
2.1.2 Interventions at Undergraduate Level
Longitudinal Social Medicine Curriculum
Research Electives
Integrated Humanities-Social Sciences Course
Value-Based Health Care Curriculum
Introduction to Social Medicine and Global Health
Theater-Based Curriculum
2.2 Student-Led Models
2.2.1 Curriculum Development
2.2.2 Social Medicine Network
2.2.3 CANMED Model
2.3 Community-Led Models
2.3.1 Social Justice Through Critical Reflections
2.3.2 Community Partnership Model
2.3.3 Nature of the Activities (Teaching and Assessment)
2.3.4 Teaching Strategies
2.3.5 Assessment Tools
2.4 Evaluation
2.4.1 Level One: Reaction
2.4.2 Level Two: Learning
2.4.3 Level Three: Behavior
2.4.4 Level Four: Results
3 Recommendations
3.1 Institutional/Organizational Level
3.1.1 Include Social Medicine as an Accreditation/Licensing Requirement
3.1.2 Engage Stakeholders
3.1.3 Establish Networks Through Active Collaboration Among All Stakeholders
3.2 Educator´s Level
3.2.1 Define Taxonomy
3.2.2 Scan the Existing Curriculum
3.2.3 Redesign the Curricula
3.2.4 Extend Social Medicine at All Levels
3.2.5 Create Interprofessional Experiences
3.2.6 Involve Learners as Active Partners
3.2.7 Acknowledge Health Professional/Provider as a Person
3.2.8 Broaden Education Framework
3.2.9 Plan Structured Evaluation
4 Conclusion and Future Directions
References
Part III: Theoretical Frameworks and Social Sciences
Strong Structuration Theory (SST) and Global Public Health
1 Introduction
2 Theoretical Overview and Narrative Review
2.1 Theories of Social Practice
2.1.1 Structuration Theory
2.1.2 Strong Structuration Theory
2.2 The Empirical Application of Strong Structuration Theory
3 Strong Structuration in Global Public Health Research
3.1 Theorizing Change in Health Systems and Health Delivery
3.1.1 Introduction of Technology into Health Systems
3.1.2 Introduction of Policy into Health Systems
3.2 Theorizing the Social Practices of Persons with Health Conditions
4 Conclusion and Future Direction
References
Theories of Practice and Global Public Health
1 Introduction
2 Practice Theories
3 Practice Theories and Health Research
4 Understanding (Sexual) Practice
4.1 Agency
4.2 Materiality
4.3 Relationality
5 Conclusion and Future Directions
References
Gender Theory and Global Public Health
1 Introduction
2 Understanding Gender Theory and Health
2.1 Gender as a Social Process
2.2 Social Inequalities and Intersectionality
2.3 Pathways from Gender to Health
2.4 Gendered Approaches to Improving Health
3 Applications of Gender Theory in Global Health
3.1 Women´s Reproductive Health and Rights: Intersectionality
3.2 Diverse Genders and Health
3.3 Men´s Health: Masculinities and Health Theory
4 Critical Perspectives on Gender Theory and Health
4.1 Embracing Gender Diversity in Global Health
4.2 Developing Gender Theory for Public Health
4.3 Global Perspectives on Gender
5 Conclusion and Future Direction
6 Cross-References
References
Intersectionality and Global Public Health
1 Introduction
2 Intersectionality
2.1 A Brief Background to Intersectionality
2.2 Some Core Tenets of Intersectionality
3 Using Intersectionality to Advance Global Public Health
3.1 Intersectionality as an Epistemological Approach
3.2 Intersectionality to Inform Research Methods
3.3 Intersectionality as a Tool for Action in Global Public Health
4 Using Intersectionality Theory in Sexual Violence Prevention: An Example
4.1 Sexual Violence in Tertiary Education Settings
4.2 Incorporating Intersectionality in Approaches to Sexual Violence Prevention in a Tertiary Educational Setting
5 Conclusion and Future Directions
6 Cross-References
References
Intersectional Risk Theory and Global Public Health
1 Introduction
2 Intersectional Analyses in Global Public Health Research
3 Intersectional Risk Theory (IRT): A Framework
3.1 Intersectional Risk Analyses, Methodology, and Methods
4 An Example of an Intersectional Risk Analysis
4.1 Elective Cesarean Sections in Brazil and Sweden
4.1.1 Context-Specific Discourses in Brazil and Sweden
4.2 Docile Birthing Bodies and Utilitarian Obstetricians: Brazil
4.3 Terrified Subjects and Knowledgeable Midwives: Sweden
4.4 Natural Birth
5 Conclusion and Future Direction
6 Cross-References
References
Decolonial Methodology in Social Scientific Studies of Global Public Health
1 Introduction
2 Logics that Give Rise to Decolonizing Methodology
2.1 Power, Privilege, and Decoloniality
2.2 Relevance of Power, Privilege, and Coloniality to the Study of Communication Disorders
2.3 Epistemological Differences to Distinguish Between Mainstream and Decolonial Methodology
2.4 Relevance of Critical Disability Studies to Decolonial Methodology
3 Examples of and Guidelines for Decolonial Research Methodologies in Social Sciences Studies of Global Health
3.1 Guidelines to Consider
3.2 Examples: Decolonial Methodology in Action-Qualitative Approaches
3.2.1 Critical Reflection in DRM
3.2.2 Example of Valuing Indigenous Knowledge: Traditional Healers Concerning Parkinson´s Disease
3.3 Recommendations: Decolonial Methodology in Action-Quantitative Approaches and Reference Practices That Reflect Decolonial ...
4 Ethical Considerations
5 Conclusion: Social Justice as Inspiration for Using Decolonial Feminist Methodologies
6 Cross-References
References
Feminist Pedagogy, the Women´s Health Movement, and the Rise of the Anti-diet Health Professional
1 Introduction
2 Women´s Liberation and Feminist Pedagogy: The Birth of Women´s Studies
2.1 Consciousness-Raising: Lived Experience and Political Mobilization
2.2 Feminist Pedagogy and Women´s Studies
3 The Women´s Health Movement
3.1 Feminist Pedagogy and the Women´s Health Curriculum
4 Lived and Learned Experiences: The Emergence of the ``Anti-Diet´´ Health Professional
4.1 Activist Opposition to Diet Culture: Foregrounding Women´s Lived Experiences
4.2 Health Professional Opposition to Diet Culture: Lived and Learned Experiences
5 Conclusion and Future Directions
6 Cross-References
References
Human Rights and Global Public Health
1 Introduction
2 Universal, Indivisible, Interrelated, Interdependent, and Inabrogable: Key Features of Human Rights
3 The Instrumental Value of Human Rights in Global Public Health Policy and Practice
3.1 Rights-Based Approaches
3.2 JASS: Just Power
3.3 Working with a Human Rights-Based Approach to Psychiatry
3.4 Education for All Young Women in Sierra Leone
3.5 Protecting the Wild Coast, South Africa
3.6 Human Rights-Based Approaches to Development
4 Conclusion and Future Direction
References
Social Determinants of Health and Global Public Health
1 Introduction
2 The Social Determinants of Health
3 Delineating Global Public Health
4 The Role of Social Determinants in Global Public Health
5 Empowering Local Communities to Address the Social Determinants of Health
6 The Way Forward
7 Conclusion and Future Directions
8 Cross-References
References
Social Justice and Global Public Health
1 Introduction
2 The Nature of Social Injustice, Its Roots, and Its Impact on Public Health
3 Taking a Social Justice Approach to Global Public Health
4 Social Injustice in Context: The Case of South Africa
5 Challenges, Solutions, and Considerations of Centering Social Justice in Public Health
6 Social Sciences, Public Health, and Social Justice
7 Conclusion and Future Directions
References
Health Promotion Paradigms
1 Introduction
2 Vision: Underpinning Ideology
2.1 Beliefs and Values in Health Promotion
2.2 Equity and Justice in Health Promotion
2.3 Reflexivity and Positionality in Health Promotion
2.4 Planetary Health in Health Promotion
3 Approach: Theories and Frameworks
3.1 Existing Theory in Health Promotion
3.2 Indigenous Theory in Health Promotion
3.3 Posthuman Theory in Health Promotion
4 Scope: Professional Reach
4.1 Pedagogy in Health Promotion
4.2 Professional Identity in Health Promotion
4.3 Workforce Capacity in Health Promotion
5 Conclusion and Future Direction
References
Accessing Health Care in Global Public Health: The History of Conceptual Frameworks
1 Introduction
2 The Conceptual Frameworks of Access Prior to 2000
2.1 The Behavioral Model of Anderson and Colleagues
2.2 The Barrier-Focused Model of Penchansky and Thomas
2.3 The Barrier-Focused Model of Dutton
2.4 The Barrier-Focused Model of Frenk
3 Recent Conceptual Frameworks of Access to Health Care
3.1 System-Centered Approaches
3.2 Patient-Centered Approach
4 The Adoption of Conceptual Framework of Access to Health Care in Empirical Studies
5 The Conceptual Framework of Access and People Living with Disabilities
6 Conclusion and Future Directions
References
Cultural-Historical Activity Theory [CHAT] and Health in Faith Communities
1 Introduction
2 Cultural Historical Influences
2.1 Object Activity and Action Within Knowledge Systems
2.1.1 Health as an Object
2.1.2 Health Activities and Actions
2.2 The Role of the Self and Social Mediation in an Activity System
3 Enacting Health Norms in the Context of Religion
3.1 Religious Institution Influences on Follower Health Norms
3.1.1 Normative Rule Adherence Effects
3.1.2 Coercive Rule Adherence
3.1.3 Mimetic Rule Adherence
3.2 Personal Influences
3.2.1 Evidence-Informed Health Norms
3.2.2 Derived Health Norms
3.2.3 Reference Health Norms
4 Reflexivity in Health Norms
4.1 Faith-Based Health Norms
4.2 Negotiated Health Norms
4.3 Privately Framed Health Norms
5 Competing and Complementary Health Norms with Religion Affiliation
5.1 Singular Effect Hypothesis
5.2 Competing Response Hypothesis
5.3 Over-Justification Hypothesis
6 Conclusion and Future Directions
References
Institutional Change and Healthcare Social Workers´ Identity: An Analysis from the Street-Level Perspective
1 Introduction
2 Professional Identity and Identity Crisis
3 Social Change and Changing Institutions
4 Being Street-Level Professionals in a Changing World
5 The Impact of Neoliberalization on Professional Identity
6 The Covid-19 Pandemic As a Game Changer?
7 Conclusion and Future Directions
References
The Ethics of AI and Robotics in Public Health: An East Asian Perspective
1 Introduction
2 Existing Applications of AI in East Asia
2.1 AI and Robotic Care: Some Background
2.2 Disease Prevention and Wellness
2.3 Diagnosis
2.4 Treatment
2.5 Lifelong and Elderly Care
3 Ethical Issues of AI in Healthcare
3.1 Bias and Reliability
3.2 Dependency and Deskilling
3.3 Objectification and Deception
3.4 Data Privacy
4 Ethical Traditions in East Asia
4.1 Buddhist Ethics
4.2 Confucian Ethics
4.3 Daoist Ethics
5 Conclusion and Future Directions
References
The Ethics of Vaccines During COVID-19: A Global Public Health Approach Through Utilitarianism
1 Introduction
2 Background
2.1 Global Issues Surrounding COVID-19 and Vaccines
2.2 Overview of COVID-19 in Australia: March 2020 to October 2021
2.3 Government and Public Influences on the Vaccine Rollout
3 COVID-19 as an Ethical Dilemma: Mandatory Vaccinations
4 Overview of the Ethical Theories
4.1 Universal Ethical Egoism
4.2 Utilitarianism
4.3 Divine Command Theory
5 Universal Ethical Egoism, Vaccine Hesitancy, Literacy, and Misinformation
6 Divine Command Theory, Vaccine Hesitancy, Literacy, and Misinformation
7 Utilitarianism, Vaccine Hesitancy, Literacy, and Misinformation
8 Recommendations
9 Conclusion and Future Direction
References
The ``Difficult Patient´´: Dominant Logics and Misfits in Medicine
1 Introduction
2 The Difficult Patient
3 Misfit One: Logics of Standardization and Complex Patient Needs
4 Misfit Two: Logics of Normalization and ``Atypical´´ Bodies
5 Misfit Three: Logics of Patient Activation and Being Active in the Wrong Way
6 Conclusion and Future Direction
References
Religion and Health
1 Introduction
2 Religion and Health
3 Religion and Culture in Health
3.1 Religion and Culture
3.1.1 Religion Functions
3.1.2 Secularization
3.1.3 Cross-Cultural Perspectives
3.1.4 Moral-Ethical Codes
4 Implications for Public Health Promotion with Religion Followers
4.1 Apostolic Faith Sexual and Reproductive Health Norms
4.1.1 Contention Between Apostolic Faith and Public Health Perspectives
4.2 Church Influences on Sexual Health Concepts Among Pentecostal Botswana Teenagers
4.3 Meaning in Life of Ghanaian Young Adults
5 Conclusion and Future Direction
References
Part IV: Research Methodologies, Social Sciences, and Global Health
Social Constructionism, Power, and Understanding the Health Needs of Different Groups Engaged in a Shared Reality
1 Introduction
2 The Social Construction of Reality
3 Power
4 Social Constructionism, and It Relevance to Health
5 A Method of Investigating Multiple Groups Engaged with a Shared Reality
6 Conclusion and Future Directions
7 Cross-References
References
Symbolic Interactionism and Global Public Health
1 Introduction
2 General Tenets of Symbolic Interactionism
3 Using Symbolic Interactionism to Understand Issues Related to Global Public Health
3.1 Foundations in Symbolic Interactionism and Public Health
3.2 Recent Studies that Apply Symbolic Interactionism to Public Health
4 Conclusion and Future Directions
5 Cross-References
References
Critical Theory
1 Introduction
2 Critical Theory and Its Essence
3 Critical Theory and Research
4 Critical Theory and Global Health
5 Conclusion and Future Directions
6 Cross-References
References
Feminist Methodology
1 Introduction
2 Feminist Methods and Public Health
2.1 Feminist Quantitative Method
2.2 Oral History Methods
2.2.1 Storytelling
2.2.2 Life Story Research
2.2.3 Narrative Inquiry
2.3 Digital Storytelling
2.4 Photovoice
2.5 Critical Ethnography
3 Conclusion and Future Directions
References
Qualitative Research Inquiry and Global Public Health
1 Introduction
2 Global Public Health
2.1 HIV/AIDS Epidemic
2.2 West African Ebola Epidemic
2.3 COVID-19
2.4 Mental Health Issues
2.5 Obesity
3 Qualitative Research and Its Role in Global Public Health
4 Qualitative Research Methods: Traditional and Emerging Method
4.1 Traditional Qualitative Research Methods
4.2 Emerging Qualitative Research Methods
5 Qualitative Research: Its Role in Implementation Science and Evidence-Based Practice in Public Health
5.1 Implementation Science and Qualitative Research
5.2 Evidence-Based Practice in Public Health and Qualitative Research
6 Conclusion and Future Directions
References
Cultural Determinants of Health, Cross-Cultural Research and Global Public Health
1 Introduction
2 Culture
3 Cultural Determinants of Health and Global Mental Health
4 Qualitative Inquiry and Cross-Cultural Research
5 Ethics and Cross-Cultural Research
6 Cross-Cultural Research and Languages
7 Conclusion and Future Directions
References
Ecofeminist Participatory Action Research for Planetary Health
1 Introduction
2 Feminist Participatory Action Research (FPAR)
3 Example of FPAR for Climate Justice and Women´s Health
4 Planetary Health
4.1 Indigenous Wisdoms and Methods Are Central to Planetary Health
4.2 Example of Planetary Health Participatory Action Research: Watershed Interventions for Systems Health in Fiji (WISH-Fiji) ...
5 EcoFeminist Participatory Action Research for Planetary Health
5.1 Interconnectedness of Oppressive Systems and Interconnectedness of Systems of Vitality
5.2 Multispecies Justice and Rights
5.3 Centering Indigenous Wisdoms and Methods
5.4 Place as Co-researcher
5.5 Relationality, Care, Love, and Solidarity
5.6 Action and Activism
6 Conclusion and Future Directions
7 Cross-References
References
Human Rights Methodologies in Minority Research
1 Introduction
2 Human Rights: Some Background
3 Humanization, Dehumanization, and Critical Consciousness
3.1 Humanization
3.2 Dehumanization
3.3 Critical Consciousness
4 The Need for Human Rights in Research Methodologies
4.1 Universality as Participatory Action Research
4.2 Indivisibility as Content Analysis
4.3 Participation as Narrative Enquiry Methodology
4.4 Accountability as Victimization Surveys
4.5 Transparency as Census Quantitative Data
4.6 Non-discrimination as Unobtrusive Methodology
5 How to Position Human Rights Research in Global Public Health Outcomes
6 Conclusion and Future Directions
References
Upending Quantitative Methodology for Use in Global Public Health
1 Introduction
2 Statistics for Marginalized Groups
3 Statistics Under a Qualitative Mental Model
4 Diffractive Methodology
5 Conclusion and Future Directions
References
Mixed Methods Research in Global Public Health
1 Introduction
1.1 What Is Mixed Methods Research?
2 What Is Global Public Health Justice Research?
3 How Can MMR Address Global Public Health Justice Issues?
4 MMR Considerations
4.1 Mental Models
4.2 Positionality
4.3 Integration
4.4 Practices to Achieve Full Integration
5 Major Approaches to MMR in Global Public Health
5.1 Explaining Quantitative Results with Qualitative Data
5.2 Using Qualitative Methods to Select Measures for Quantitative Validation
5.3 Participatory Research
6 Conclusions and Future Directions
References
Part V: Research Methods, Social Sciences, and Global Health
Digital Health Research Methods and Global Public Health
1 Introduction
2 Digitally Mediated Realities
3 Digital Health Research Methods
3.1 Internet and Social Media
3.2 Wearables and Personal Devices
3.3 Data Records and Management
4 Benefits of Digital Research Methods for Global Public Health
5 Bridging the Digital Divide and Other Regulatory Hurdles
6 Conclusion and Future Directions
7 Cross-References
References
Coproducing Online Focus or Consultation Groups for Health and Social Care Research
1 Introduction
2 Coproduction and Cocreation
3 The History of Focus and Consultation Groups in Research
4 Access to Participants and Ethics
5 Online Focus Groups or Consultation Groups
6 Conclusion and Future Directions
References
Community Mapping Method
1 Introduction
1.1 What Does the Term Community Mean?
1.2 What Is a Community Asset?
2 Mapping: Origin and Overview of Asset Mapping
3 CAM as a Participatory Community-Engaged Research Method
4 The Mapping Process
4.1 Identifying the Aim, Purpose, or Desired Outcome/s
4.2 Identifying the Setting and Participants
4.3 Determining the Time and Resources Needed to Map Assets
4.4 Establishing the Kind of Assets to Include
4.5 Identifying Specific Methods for Mapping Assets
4.6 Making Sense of the Data and Planning the Way Forward
5 Conclusion and Future Directions
References
Photovoice
1 Introduction
2 Photovoice and the Problem of Change-Making
3 The Multi-Country Photovoice Project and Social Change: Challenges and Prospects
3.1 Change-Making Successes
3.2 The Challenge of Change-Making
4 Conclusion and Future Directions
References
Walking Interviewing Method
1 Introduction
2 The Benefits of Walking Interviews
3 Walking Interviews in Public Health
4 How to Conduct Walking Interviews
5 Ethical Considerations for Walking Interviews
6 Conclusions and Future Directions
References
Digital Storytelling
1 Introduction
2 Digital Storytelling and Public Health
2.1 Critical Narrative Intervention
2.2 Theoretical Frameworks
3 Digital Storytelling Method
3.1 Components of the Digital Storytelling Process
3.2 Adaptations for Online and Under-Resourced Settings
3.2.1 In-Person and Online DST Curricula
3.2.2 DST in Under-Resourced Settings
3.3 Data Collection and Analysis
4 Ethical Framework and Considerations
4.1 Ethical Guidelines for the Research Team
4.2 Ethical Framework
5 Four Applications of DST for Global Public Health
6 Conclusion and Future Directions
7 Cross-References
References
Concept Mapping Method
1 Introduction
2 Group Concept Mapping
3 Key Characteristics of GCM
3.1 Mixed-Methods
3.2 Participatory
4 Using GCM for Public Health Research
4.1 Strengths of GCM
4.2 Limitations of GCM
5 Process: Stages of GCM Method
5.1 Stage 1: Planning
5.1.1 Rating Questions
5.1.2 Participants
5.2 Stage 2: Generation
5.2.1 Idea Generation Through Brainstorming
5.2.2 Idea Synthesis
5.3 Stage 3: Structuring
5.3.1 Sorting
5.3.2 Rating
5.3.3 Participant Questions
5.4 Stage 4: Analysis
5.4.1 Similarity Matrix
5.4.2 Multidimensional Scaling (MDS)
5.4.3 Bridging/Anchoring Analysis
5.4.4 Hierarchical Cluster Analysis
5.4.5 Other Analysis
5.5 Stage 5: Interpretation
5.6 Stage 6: Utilization
6 Case Study: Migrant and Refugee Youth Sexual and Reproductive Health and Rights Decision-Making
6.1 Planning
6.2 Generation
6.3 Structuring
6.4 Analysis
6.5 Interpretation
6.6 Utilization
6.6.1 Benefits of GCM in This Study
7 Conclusion and Future Directions
References
Experience-Based Codesign (EBCD) for Sensitive Research
1 Introduction
2 Creating Trigger Films
3 Identifying Touch Points in Individual Case Study Films
4 Clustering Touch Points into a Collective Voice Trigger Film
5 Polishing the Films
6 Validating the Trigger Films
7 Conclusion and Future Directions
8 Cross-References
References
Researching Female Sexual Dysfunction in Sensitive Populations: Issues and Challenges in the Methodologies
1 Introduction
2 How FSD Is Defined Medically?
3 Culturally Sensitivities and Women with FSD
4 Meta-synthesis of Qualitative Studies Seeking to Understand the Experience of FSD
4.1 Included Studies Populations
4.2 Study Methods
4.3 Theoretical, Methodological, and Analytical Frameworks
4.4 Choice of Frameworks
4.5 Methodological Frameworks: Phenomenology vs Grounded Theory
4.6 Rigor and Reflexivity
5 Conclusion and Future Direction
References
Consensus Methods for Health Research in a Global Setting
1 Introduction
2 Overview of Consensus Methods in Health Research
3 Nominal Group Technique
3.1 When to Use Nominal Group Technique
3.2 Participant Selection, Recruitment, and Group Number
3.3 The Facilitator and Setting
3.4 How to Conduct the Nominal Group Technique
3.5 Data Analysis
3.6 Methodological Variations and Practical Aspects
4 The Delphi Method
4.1 Purpose and Aims of the Delphi Method
4.2 Panel Composition and Recruitment
4.3 Data Collection and Analysis
4.3.1 Questionnaire and Items Included in the Survey
4.3.2 Methods of Prioritization
4.3.3 Providing Feedback from Previous Rounds
4.3.4 Number of Rounds
4.3.5 The Definition of Consensus
4.4 Analysis
4.5 Challenges and Future Directions
5 Stakeholder and Consensus Workshops
5.1 Role and Aim
5.2 Participants and Contributors
5.3 Workshop Program and Process
5.4 Analysis
6 Cross-Cultural and Multinational Consensus Methods
7 Conclusion and Future Direction
References
The Delphi Method
1 Introduction
2 The Delphi Methodology
3 Various Types of Delphi
3.1 Classical Delphi
3.2 Decision Delphi
3.3 Policy Delphi
3.4 Ranking-Type Delphi
4 Characteristics of the Delphi Technique
4.1 Anonymity
4.2 Iteration Process
4.3 Controlled Feedback
4.4 Statistical Aggregation of Group Response
5 The Process of Implementing the Delphi Approach
5.1 The Exploratory Phase
5.2 The Distillation Phase
5.3 Conducting the Delphi Rounds
5.4 The Utilization Phase
6 Considering Delphi Shortcomings and Weaknesses
7 Conclusion and Future Directions
References
Social Network Methods and Global Health
1 Introduction
2 What is Social Network Analysis?
3 Contagion Networks
3.1 Infectious Diseases: Tracing and Predicting Outbreaks, and Designing Effective Public Health Measures
3.2 Using Social Network Analysis to Control the Spread of COVID-19
3.3 Noninfectious Diseases: A Social Network Explanation
4 Support Networks
4.1 The Effect of Social Networks on Health Outcomes
4.2 Harnessing Social Support to Increase Antiretroviral Therapy Adherence
4.3 Social Network Approaches to Support Health Service Providers
5 A Network Approach to the Health System
5.1 Network Approaches to Referral Networks
5.2 Reaching Marginalized People
5.3 Respondent-Driven Sampling (RDS)
6 Optimizing Interventions
6.1 Strategic Seeding of Interventions
7 Conclusion and Future Direction
8 Cross-References
References
Social Surveys and Public Health
1 Introduction
2 Fundamental Aspects of a Social Survey
2.1 Formulate Good Research Question
2.2 Study Design and Data Collection Method
2.2.1 Response Rate
2.2.2 Sample Size and Representativeness
2.2.3 The Length and Content Including in a Questionnaire
2.2.4 Quality of Answers
3 Practical Tips
3.1 Total Survey Errors
3.2 Empathy in Qualitative Interview
4 Social Surveys and Global Public Health: Research Examples
5 Conclusion and Future Directions
6 Cross-References
References
Systematic Review and Evidence Synthesis in Public Health
1 Introduction
2 The Systematic Revolution of Public Health Research: A Journey Through Time
2.1 Systematic Review Methodology: Blasts from the Past
2.2 How Public Health Research Becomes Systematic
3 Meet the Systematic Review Family
3.1 Fresh Takes on Systematic Review Methodologies
3.2 Qualitative Evidence Synthesis: A Review Beyond Numbers
3.3 Rapid Reviews in Crises: A Shortcut to Evidence Synthesis
3.4 Evidence Gap Maps: A Blueprints to Addressing Gaps of Knowledge
4 Systematic Review: Pearls of Methodology
4.1 PICO(TS): If You Have to Ask a Question, Ask It Precisely
4.2 Comprehensive Literature Search: Databases and Keywords
4.3 Analytic Framework: Future Standard for Any Systematic Reviews?
4.4 Riding the Wave of Tech: Advancing Systematic Reviews with Artificial Intelligence
5 Debunking a Systematic Review: A Beautiful Forest or a Tangled Mess of Trees?
5.1 Risk-of-Bias Assessment and Confounding Factors: ``Garbage In, Garbage Out´´
5.2 Pooling Oranges with Apples in Meta-Analysis
6 Conclusion and Future Directions
References
Visualizing Relational Autonomy Through Mud Maps: A Methodological Reflection
1 Introduction
2 Understanding Women´s Autonomy in Reproductive Health
2.1 Autonomy
2.2 Relational Autonomy
2.3 Relational Autonomy in Health Care
3 Visualizing Relational Autonomy
3.1 Mud Maps
4 Analysis of Mud Maps
4.1 Stage 1: Mud Map as a Whole
4.1.1 Circular or Linear
4.1.2 View of the Decision-Making Self
4.1.3 View of Social Context
4.2 Stage 2: Participants´ Use of Specific Markings
4.2.1 Arrows to Depict Flow of Information
4.2.2 Love Hearts to Depict Appreciation
4.2.3 Populating Exclusion Areas
4.2.4 Abortion Decision as Buffer
5 The Methodological Value of Mud Maps
6 Conclusion and Future Directions
References
Part VI: The Role of Social Science in Infectious Illnesses
Social Sciences in Emerging Infectious Disease
1 Introduction
2 Overview of Ebola Disease
3 The Role of Social Science Research in Public Health Response of Recent Ebola Outbreaks in West and East Africa
4 Conclusion and Future Directions
5 Cross-References
References
The Role of Social Science in Influenza and SARS Epidemics
1 Introduction
2 The Socioeconomic Aspects of Epidemic Emergence
3 Surveillance, Local Knowledge, and Uncertainty
4 Social Diversity and the Experience and Impact of Influenza and SARS
4.1 Vulnerability Is Biosocially Constituted
4.2 Appearance and Interpretation of Symptoms
5 Communicating Risk to a Socially Diverse Audience
5.1 The Importance of Transparency and Honesty Even in Situations of Uncertainty
5.2 Communication Inequalities and Social Diversity
5.3 Community Engagement
5.4 Stigma and Scapegoating
6 The Social Aspects of Compliance with Non-Pharmaceutical Interventions
7 Antiviral and Vaccine Rollout
8 Conclusion and Future Directions
References
Beyond the Disease: The Socioeconomic Drama of the Covid-19 Pandemic
1 Introduction
2 The Multidimensions of Empathy
3 Pandemic Effect ``COVID-19´´: What Effect Has It Had?
3.1 COVID-19, Lockdown, Depression, and Anxiety Disorder
3.2 Lockdown and Suicides Among Teenagers
3.3 Lockdown and Post-Traumatic Stress Disorder
3.4 Psycho-Physiological Effects of the Mask Use
3.5 Lockdown Effects on the Sleep Quality
3.6 Lockdown Effects on the Decreased Physical Activity
3.7 Lockdown and Eating Disorders
3.8 Lockdown, Internet, and Social Media Problematic Use
3.9 Lockdown and Family Violence
3.10 The Role of the Infodemic in Triggering the ``Hemodemic´´
4 Conclusion and Future Direction
References
The Role of Social Science in Shaping the Sexually Transmitted Diseases (STI) Discourse
1 Introduction
2 Public Health and Social Control
2.1 Phase One: Social Science, Pathology, Prostitution, and Venereal Disease (Sexology)
2.2 Phase Two: Social Science and Sex Education (Sexual Science)
2.3 Phase Three: HIV/AIDS, Social Science and Risk Groups (Epidemiology)
3 Trends in STIs in the USA: What Have We Learned?
4 Case Studies: How Far Have We Come?
5 Conclusion and Future Direction
6 Cross-References
References
Antimicrobial Resistance: Social Science Approaches to the Microbiosocial
1 Introduction
2 AMR Cultures: Documenting the Varied Understandings of AMR
3 Contextualizing Antimicrobial Practices Among the Lay Public
4 Antimicrobial-Prescribing Practices and Stewardship Among Healthcare Providers
5 Power Relations and Infrastructures of Infection
6 Tracing Human-Microbial Relations
7 The Politics of AMR Discourse
8 AMR in the Media
9 Conclusion and Future Directions
References
Intersectionality Theory and Its Application in the COVID-19 Pandemics
1 Introduction
2 Intersectional Approaches: Contributions to the Analysis of Inequality and Public Policies
2.1 Intersectionality As an Analytical Perspective
2.1.1 Health Policy As Public Policy: Contributions to the Analysis Made by Intersectionality
2.2 Intersectionality As a Fractal: A Heuristic Analysis Tool
3 Analyzing the COVID-19 Pandemic As an Intersectional Phenomenon
3.1 The Social Determinants of COVID-19
3.2 The Socioeconomic Consequences of Social Distancing Measures
3.2.1 Lockdowns
3.2.2 Working from Home
3.2.3 Studying at Home
3.2.4 Locked Down at Home
3.3 The Role of Public Policies Under COVID-19
4 Conclusions and Future Directions
5 Cross-References
References
Social Science Priorities and Response to COVID-19
1 Introduction
2 Overview of Social Science Priorities and Response to COVID-19
3 The Role of Uncertainties in Epidemics and Pandemics
4 Political Economy and Understanding the Wider Context of COVID-19
5 COVID-19 Vaccine ``Hesitance´´
5.1 Defining Vaccine Hesitancy
5.2 The Infodemic, and the Rise of ``Infodemiology´´
5.3 Explaining Vaccine Hesitancy: Beyond Information
5.4 From Hesitancy to Confidence
6 Conclusion and Future Directions
References
Malaria, Its Prevention and Control: Perspectives from the Social Sciences
1 Introduction
2 Etiology, Symptomology, and Nosology
3 Vector Control Programs
4 Treatment as Prevention
5 Malaria Vaccines
6 Diagnosis and Treatment
7 Community Engagement
8 Conclusion and Future Directions
9 Cross-References
References
The Role of Social Science in Hepatitis
1 Introduction
2 What Is Hepatitis C?
3 Stigma
4 Qualitative Research
5 Conclusion and Future Directions
6 Cross-References
References
Part VII: The Role of Social Sciences in Chronic Illnesses
The Contributions of Social Science to the Study of Breast Cancer
1 Introduction
2 Cross-Cultural Understanding of Breast Cancer
3 Local Ideologies of Gender Roles, Womanhood, and Femininity
4 Deconstructing Cultural Logics Surrounding Responses to the Uncertainty of Breast Cancer
5 Health-System Barriers to Care-Seeking
6 The Political Economy of Breast Cancer
7 Geography and Breast Cancer
8 Breast Cancer Movement and Activism
9 Conclusion and Future Direction
References
From Acute Infection to Chronic Health Condition: The Role of the Social Sciences on the HIV/AIDS Global Epidemic
1 Introduction
1.1 A Short History of HIV/AIDS
1.2 Global Prevalence of HIV/AIDS
1.3 Biomedicalization of HIV
2 HIV/AIDS and Interpretative Approaches in the Social Sciences
2.1 Interpretative Social Sciences in HIV Testing and Prevention
2.1.1 Lived Experiences of Using HIV Testing and Prevention Technologies
2.1.2 The Role of Healthcare Workers in HIV Testing and Prevention
2.2 Interpretative Social Sciences in HIV Care and Treatment
2.2.1 Adherence to HIV Antiretroviral Therapy
2.2.2 The Chronic Disease Turn and HIV Identity Work
2.2.3 The Normalization of HIV
2.2.4 The Impact of HIV Stigma and Discrimination on Identity
3 HIV/AIDS and Critical Approaches in the Social Sciences
3.1 Structural Impediments and Structural Violence in HIV/AIDS Work
3.1.1 Structural Violence and HIV/AIDS
3.1.2 Laws that Criminalize and Restrict the Movements of PLHIV
3.1.3 Structural Impediments and Its Impact on Societal and Global Ideologies
3.1.4 Structural Impediments and Its Impact on PLHIV
3.2 Sociopolitical Discourses on HIV and AIDS
3.2.1 Moralizing Discourses and the HIV/AIDS Epidemic
3.2.2 Discursive Constructions of HIV Biomedicine Technologies
4 The Impact of the Social Sciences on HIV/AIDS Work in the Future
5 Conclusion and Future Directions
6 Cross-References
References
Social Science Research and Sickle Cell Disorders
1 Introduction
2 Decolonizing the Past to Understand the Present
3 Screening for SCD in the Past and Present
3.1 Disability
3.2 Quality of Life and Biopolitics of Life Itself
3.3 Racism
3.4 Stigma and Trait
3.5 Gender
3.6 Reproductive Justice
3.7 Healthcare, Treatment, and Access
4 Theoretical Approaches in the Present
4.1 Becoming Chronic and ``Normal´´
4.2 Liminal States
4.3 Discriminate Biopower
4.4 Encultured Genes
4.5 Biocultural Citizenship
5 Conclusion and Future Directions
6 Cross-References
References
The Role of Social Science in Dementia: Biopsychosocial Approaches
1 Introduction
2 Professional and/or Legal Definitions and Theories on Dementia
3 Activity, Participation and Contextual Factors with Dementia
3.1 Activity and Dementia Functions
3.2 Participation with Dementia
3.3 Contextual Factors and Dementia Care
3.4 Personal Factors
4 Recovery Approaches and Dementia
4.1 Collaborative Teams
4.2 Community-Based Recovery Models
4.3 Integrated Recovery-Oriented Approaches
5 Issues for Research and Other Forms of Scholarship
6 Conclusion and Future Direction
References
The Role of Social Science in Conflict Situations
1 Introduction
2 The Health Impacts of Conflict and Violence
3 Understandings of Conflict and Violence
3.1 Structural Violence
3.2 Social Suffering
3.3 Slow Violence
3.4 The Changing Nature of Conflict over Time
3.5 Uneven Effects of Conflict and Violence
4 De-Medicalizing and Localizing Health and Illness in Conflict Situations
5 Health, Health Systems, and Peacebuilding
6 Conclusion and Future Directions
7 Cross-References
References
The Role of Social Sciences in Advancing a Public Health Approach to Violence
1 Introduction
2 The Emergence of Violence as a Public Health Problem
3 The Public Health Approach to Violence
4 Blind Spots and Data Deserts
5 Bringing Context Back to Public Health Pictures of Violence
6 Integrating Methodologies to Provide Rich Data and Context
7 Conclusion and Future Directions
References
The Role of Social Sciences in Epilepsy
1 Introduction
2 Contributions of Social Sciences to Understanding Epilepsy and Its Care
2.1 Political Economy and Epilepsy
2.2 Public Health
2.3 Epidemiology
2.4 Climate Change
3 Role of Different Disciplines in Epilepsy
3.1 Psychology
3.2 Sociology and Anthropology and the Study of Epilepsy
3.2.1 Sociology´s Contribution to the Study of Epilepsy
3.2.2 Quality of Life (QoL) Research and Methods in Sociology
3.3 Anthropology´s Contribution to the Study of Epilepsy
3.4 Ethnography
3.5 Stigma and Related Methods
4 Conclusion and Future Direction
References
Intimate Partner Violence and Global Public Health
1 Introduction
2 Intimate Partner Violence (IPV): Background
3 The Role of Social Science in Understanding IPV
4 IPV and Its Emergence As a Global Public Health Concern
5 The Nexus of Identity and IPV
6 Current Barriers Preventing IPV from Being Recognized As a Global Public Health Issue
6.1 Disability
6.2 Sexuality Diverse Identities
6.3 CALD Identities
6.4 Indigenous Identity
6.5 Gendered Understandings
7 Other Nonidentity-Related Factors That Underwrite IPV and Health Outcomes
7.1 Criminal Justice Systems
7.2 Access to Domestic Violence Services
7.3 Socioeconomic Status
7.4 Geographical Location
8 Facilitators Allowing IPV to Be Recognized As a Global Public Health Issue: A Case for the Social Sciences
8.1 Current Gaps
8.2 Contradictions
8.3 Funding in Research and Policy Development
9 Conclusion and Future Direction
References
Intersections of Culture and Structure and Intimate Partner Violence Among Migrant and Refugee Communities
1 Introduction
2 Intimate Partner Violence
3 Use of an Ecological Framework and Intersectionality to Understand IPV
4 Culture
5 Social Structure
6 Intersections of Culture and Structure
7 Conclusion and Future Direction
References
The Role of Social Science in Behavior Addiction
1 Introduction
2 Addictions: The Case of Alcohol
2.1 A Scientific Dispute
2.2 Addiction as a Disease: A Popular Idea
2.3 The Importance of the Subjective Narrative of Alcoholism
3 Some General Contributions from the Social Sciences on Alcohol
3.1 Social Epidemiology
3.2 The Total Consumption Model
3.3 Attitudes and Drinking
3.4 Alcohol and the Burden of Morbidity and Mortality
3.5 A Public Health Perspective
3.6 Treatment for People with Alcohol Problems
4 Addictions
4.1 Control or Not?
4.2 Lifestyle Perspectives
4.3 Addiction as Excessive Appetite
5 PRIME Theory of Motivation
5.1 The Role of Identity in Choosing Actions
5.2 PRIME Theory and Addiction to Alcohol
5.3 Addiction and Motivational System
6 Conclusion and Future Directions
References
The Role of Social Science in Substance Use Disorders and Addiction
1 Introduction
1.1 Bio-Psychopharmacological Theory
1.2 Psychosocial-Environmental Theories
2 Definitions and Prevalence
2.1 Definitions
2.2 Prevalence
3 History of SUD Diagnosis and Care
4 Changes in Legal and Cultural Policy
4.1 Culture Shift
4.2 Drug Courts
5 Assessment and Diagnosis Practices
5.1 DSM-5 Criteria
5.2 Co-Occurring Conditions and Disorders
6 Treatments for SUD and Related Mental Health Disorders
6.1 Psychotherapy
6.2 Behavioral Therapies
6.3 Group Therapy
6.4 Medication-Assisted Therapy
6.5 Community-Based Services
7 Issues for SUD Research
8 Conclusion and Future Directions
References
Assisted Dying as a Global Public Health Priority
1 Introduction
2 What Is VAD?
3 Why Is VAD a Matter of Urgency for Global Public Health?
3.1 Urgency in Context
3.2 Robust Assisted Dying Frameworks Take Time to Establish
4 Known Barriers to Establishing a Consistent Global Public Health Framework for VAD
4.1 Underlying Cultures of Belief Which Inform Medical and Health Delivery Systems Against VAD as an Ethical Choice at End of ...
4.2 A Lack of Consistent Terminology and Understanding of End of Life Terminology (Death Literacy)
4.3 Costs Associated with Lethal Dose Medicaments
4.4 Agreement as to Who, and When, a Person Qualifies for Access to VAD According to Relevant Criteria: Physical Illness, Ment...
4.5 Ethics Are Political
4.6 Ethics, Religion, and the Opt-in Nature of VAD
4.7 Death Literacy
4.8 Consistency of Language
4.9 Social Capital Matters at End of Life
5 Conclusion and Future Direction
References
At the End of Life: Health, Death, and Cultural Practices
1 Introduction
2 Definition of Death
3 Perspectives Toward Death and Dying
4 A Good Death: What Does It Mean?
5 The Death Nowadays
5.1 Life Expectancy
5.2 Causes of Death
5.3 The Locations of Deaths
6 The Future of Death: What It Might Look Like
7 Euthanasia: A Controversial Ethical Challenge
8 Conclusion and Future Directions
References
Part VIII: Social Science Research, Sexuality, Sexual and Reproductive Health, and Mental Health
Motherhood
1 Introduction
2 Contextualizing Maternal Health and Well-being
2.1 Goals of Maternal Health Promotion
2.2 Motherhood Research
3 Perinatal Mental Health
3.1 Measurement Tools Used in Assessing Maternal Mental Health
3.2 Prevalence, Social Factors, and Outcomes of Maternal Mental Health
4 Spotlight: Maternal Mental Health and Intimate Partner Violence (IPV)
5 Indigenous Mothering
5.1 Indigenous Understandings of Mothering in Aotearoa
5.2 Research About Young Indigenous Mothers
5.3 Indigenous Research About Women´s Role in Nurturing Children
5.4 Indigenous Mothering as a Site of Resistance
6 Mothering with Disabilities
7 Conclusion and Future Directions
References
Infertility as a Social and Public Health Issue
1 Introduction
2 Infertility as a Threat to Identity
3 Infertility, Psychological Distress, and Coping
4 Infertility and the Couple Relationship
5 Diverse Sociocultural Meanings of Infertility and Treatment
6 Marginalization and Accessing Infertility Treatment
7 Conclusion and Future Directions
References
Abortion, Stigma, and Intersectionality
1 Introduction
2 Conceptualizing Stigma
3 Abortion Stigma
4 Intersectionality, Reproductive Justice, and Abortion Stigma
4.1 Abortion Care-Seekers: Micro-Level Abortion Stigma
4.2 Abortion Care-Seekers: Meso-Level Abortion Stigma
4.3 Abortion Care-Seekers: Macro-Level Abortion Stigma
5 Providers and Abortion Stigma
6 Resistances to Abortion Stigma: Care-Seekers and Providers
7 Evidencing Abortion Stigma
8 Conclusion and Future Directions
References
Childbirth and Birth Care
1 Introduction
2 The Medicalization of Birth
3 Beyond Medicalization Critique: Exploring Alternative Birth Spaces and Counter Movements
4 Politics of Birth and Birth Care: Reproductive Governance
4.1 Governance Along the Color Line
4.2 Queering Reproduction and Birth Care
5 Care Practices and Dynamics
5.1 From Mistreatment to Obstetric Violence
5.2 Obstetric Violence, Hierarchy, and Radical Otherness
5.3 Obstetric Violence, Assemblage, and Ambiguous Agency
5.4 Care as Relational, Social Practice
6 Concluding Thoughts
References
Sexual and Reproductive Health and Young People: A Social Science Approach
1 Introduction
2 Sociological Approach to Sexual and Reproductive Health
3 Social Construction of Sexual and Reproductive Health
4 Sexual and Reproductive Health and Rights
5 Social Science Methods to Understand Sexual and Reproductive Health
5.1 Methods to Mitigate Eurocentric Research
5.2 Participatory Action Research (PAR) as a Social Science Research Method
6 Participatory Action Research: Case Study of Migrant and Refugee Youths´ Perspectives on Sexual and Reproductive Health and ...
6.1 Qualitative
6.1.1 Brainstorming Workshops
6.1.2 Focus Group Training
6.1.3 YPL co-facilitated Focus Groups
6.1.4 Annual Feedback Session with YPLs
6.2 Mixed-Methods
6.2.1 Concept Mapping
6.3 Quantitative
6.3.1 Survey
6.4 Model Development Workshop
7 Lessons Learned from the Case Study
7.1 Incentives to Engage Youth Participants to PAR Focused on SRH
7.2 Youth Participant Retention in Long-Term PAR Projects
7.3 Challenges for Researchers to Transfer Control to Youth Participants
7.4 Realistic Expectations When Engaging Youth in PAR of Sensitive Sexual Health Topics
7.5 Personnel Challenges in Conducting Mixed-Methods PAR Projects on Specialized Topics of SRHR
8 Conclusion and Future Directions
References
Sexual and Reproductive Health of People with Physical Disabilities
1 Introduction
2 The Prevalence and Lives of People with Disabilities in Vietnam
3 The Disability Discourses: Theories in Disability Research
3.1 Normality-Deviance Discourse
3.2 Equality-Inequality Discourse
3.3 Us-Them Discourse
3.4 Theories in Disability Study and Health
4 The Roles of Social Sciences Approach in Researching People with Disabilities
5 Research on People with Physical Disabilities in Vietnam
6 What Was Found? Research Findings
6.1 Sexual Practices of People with Physical Disabilities
7 Sexual Problems
7.1 Sexual Coercion
7.2 Sexual Position
7.3 Adapting to be Happier
7.4 Negative Experiences at Hospitals for People with Physical Disabilities
7.4.1 Inaccessibility in Hospitals
7.4.2 Insensitive Health Care Providers
8 What Are Learned from the Research Project?
9 Conclusion and Future Direction
References
Mental Health Among Young People
1 Introduction
1.1 Social Science of Mental Health: A Definition
1.2 The Mental Health of Young Adults
2 The Theoretical Perspective of Social Science on the Mental Health of Young Adults
3 COVID-19, Mental Health, and Young Adults
3.1 Measures Implemented During COVID-19
3.2 Impact of COVID-19 on Young Adults
3.2.1 Impact on Education
3.2.2 Impact on Interpersonal Relationships
3.2.3 Impact on Employment
3.2.4 Impact on Social Support
4 Shift in Mental Health Social Systems
4.1 Human Rights
4.2 Developing Sustainability
4.3 Digitalization
5 Conclusion and Future Direction
6 Cross-References
References
Mental Health and Indigenous People
1 Introduction
2 Professional and Legal Definitions of Health and Well-being in Indigenous Communities
3 History of Research and Practice in Indigenous Mental Health
4 Current and Prospective Practices in Indigenous Mental Health Sustenance
4.1 Participatory Care
4.2 Strength-Based Community-Centric Approaches
4.3 Professional and Policy Issues
5 Issues for Research and Other Forms of Scholarship
6 Conclusion and Future Directions
References
Mental Health Among Homeless People
1 Introduction
2 Homelessness: An Overview
3 Trauma in the Lives of Persons Experiencing Homelessness
4 Homelessness and Its Effect on Mental Health
4.1 Depressive Symptoms and Depression
4.2 Anxiety and Anxiety Disorders
4.3 Deliberate Self-Harm and Suicidality
4.4 Psychotic and Personality Disorders
4.5 The COVID-19 Pandemic and Mental Health
4.6 Shame and Stigma
4.7 Intersectionality
5 Social Support
6 Homelessness and Mental Health: Intervention and Prevention
7 Conclusion and Future Directions
8 Cross-References
References
Dementia and Older Persons in USA
1 Introduction
2 Legal and Professional Definitions
3 History of Dementia Care in the USA
4 Current US Dementia Care Practices
4.1 Diagnostic Practices
4.2 Assisted Living, Nursing Home, and Family Care
4.3 Pharmacological Care Interventions
4.4 Non-pharmacological Therapy Care Strategies
5 Issues for Dementia Care Practice and Other Forms of Scholarship
5.1 Cultural Issues
5.2 Policy and Professional Issues
6 Conclusion and Future Directions
7 Cross-References
References
The Role of Social Sciences in Understanding Mental Health and LGBTIQA+ People
1 Introduction
2 Psychological Concepts
3 Sociological Concepts
4 Sex, Gender, and Sexuality
5 Bridging Between Sociological and Psychological Concepts
6 Research into Practice
6.1 Case Study: Clinical Therapeutic Practice
7 Conclusion and Future Direction
References
Part IX: Social Science Research and the Health of Socially Excluded and Marginalized Groups
Post-migration Social Determinants of Health for People from Refugee and Asylum-Seeking Backgrounds
1 Introduction
2 Precarity, Social Determinants of Health, and Integration
3 Key Social Determinants
3.1 Employment and Income
3.2 Housing and Neighborhood
3.3 Education and Language
3.4 Social and Family Relationships
3.5 Discrimination
3.6 Health Services
4 Conclusion and Future Directions
5 Cross-References
References
The Health of People Experiencing Homelessness
1 Introduction
2 Characterizing Homelessness
3 Public Health and Health Promotion Practices
4 Causes of Homelessness
5 Identifying Risk and Protective Factors for Homelessness
6 Homelessness and Its Effects on Health
6.1 Physical Health
6.2 Mental Ill-Health
6.3 Substance Use and Abuse
6.4 Injuries
6.5 Infections
6.6 Premature Mortality
7 Prevention and Health Intervention
8 Conclusion and Future Directions
9 Cross-References
References
Toward the Betterment of Prisoners´ Lives: The Role of Social Science Research-Based Knowledge and Evidence
1 Introduction
2 Research on Prisoners´ Experiences: A Summary of Established Themes
3 Reentry and Recidivism
4 Exploitation and Inclusion in Prisoner Research
5 Applied Research and Evidence-Based Practices
5.1 Evidence-Based Corrections
5.2 A Public Health Approach to Improving Prisoners´ Lives
5.3 Two Notes of Caution
6 Conclusion and Future Directions
References
Sex Trafficking of Women and Children: Male Sexual Violence, Public Health, and the International Survivor Movement
1 Introduction
2 Sex Trafficking: Meanings and Misconceptions
2.1 The (Ir)Relevance of Consent
3 Human Trafficking: A Global Health Concern
3.1 Causes and Prevention
4 Theorizing the Male Sex-Right: Radical Feminist and Social Scientific Discourses on the Sex Trade
4.1 Spotlighting the Male Sex Buyer
5 Harm Minimization, Stigma, and Choice: Public Health Discourses on ``Sex Work´´
6 From Managing to Preventing Sexual Violence: Survivor-Led Movements and the Future of Anti-Trafficking Advocacy
6.1 Managing Violence: Sex Worker Rights Movements
6.2 Preventing Violence: Survivor-Led Abolitionist Movements and the Nordic/Equality Model
7 Conclusion and Future Directions
8 Cross-References
References
Sexual Justice and Sexualities
1 Introduction
2 A Brief History of Sexualities Research
3 Sexualities and Public Health
4 Critical Approaches to Sexualities and Sexual Justice
5 Contextual, Locational, and Global Approaches to Sexualities
6 Reflexivity and Sexualities Scholarship
7 Challenging Dominant Assumptions with Sexualities Research
8 Sexualities of Invisible and Othered Bodies
9 Sexualities, Sexual Justice, and Action
10 Conclusion and Future Directions
References
Gender Minority Health Vulnerabilities During Covid-19 Pandemic Across Southeast Asian Waters: The Cases of Vietnam and the Ph...
1 Introduction
2 The Epidemiological Situations in the Philippines and Vietnam and Their Effects on Social Developments
2.1 The Philippines
2.2 Vietnam
3 An Overview of the Gender Minority Situation in the Philippines and Vietnam
3.1 The Philippines: Tolerance and Conditional Inclusion
3.2 Vietnam: Increased Awareness of LGBT Rights with a Focus on Public Health Concerns
4 Gender Minority´s Precariousness in Times of Covid-19
4.1 The Philippines
4.2 Vietnam
5 Conclusion and Future Directions
References
Social Justice and Older Persons: Impact of the COVID-19 Pandemic
1 Introduction
2 Social Justice
3 Oppression
4 Intersectionality
5 Social Justice and COVID-19
6 Ageism
7 Race and Ethnicity
8 Poverty
9 Specific Populations
9.1 Informal Caregivers
9.2 Kinship Caregivers
10 Systems of Care
10.1 Nursing Home Care
10.2 Home Care Services
11 Technological Support
12 Conclusion and Future Directions
References
Understanding Statelessness and Health Through Social Science
1 Introduction
2 What Is Statelessness
3 Governance and Health
4 Access to Birth Registration
5 Access to Healthcare
5.1 Entitlement and Availability
5.2 Linguistic and Cultural Barriers
5.3 Identification and Candidacy
5.4 Fear of Arrest or Deportation
6 Social Determinants of Health
6.1 Housing, Shelter, and Containment
6.2 Livelihood, Poverty, and Resources
7 Exclusion and Structural Violence
7.1 Statelessness and Structural Violence
7.2 Daily Stressors and Minority Stress
7.3 Suffering and Humiliation
8 Conclusion and Future Directions
9 Cross-References
References
Health for All? A Global Health Approach for Justice Reinvestment and Indigenous People
1 Introduction
2 Concepts of Global Health
3 The Future of Global Health: Embedding Indigenous Perspectives
3.1 What Is Health?
3.2 What Contributes to Health Outcomes? An Example of Crime and Violence as a Social Determinant of Health
4 Case Study: Indigenous Australia
4.1 Aboriginal and Torres Strait Islander People
4.2 Indigenous Peoples: Health and Justice
4.3 Violence and Health Are Intertwined
5 Justice Reinvestment
6 How Maranguka Can Inform a Global Health Approach
6.1 Collaborative (or Collaborating)
6.2 Trans-National (or Cross-National)
6.3 Research
6.4 Action
6.5 Promoting (or Improving)
6.6 Health for All
7 Conclusion and Future Directions
References
COVID-19 Pandemic and the Health and Well-Being of Vulnerable People in Vietnam
1 Introduction
2 Effects on Health
2.1 General Population
2.2 Vulnerable Population
3 Effects on Economy
4 Poverty and Inequality
4.1 Labor and Other Outcomes
5 Policy Responses
5.1 Policy Responses and Public Support
5.2 Policies Targeting the Vulnerable
6 Conclusion and Future Direction
.6 Appendix A Number of COVID deaths and public spending on health for Vietnam and other countries
References
Health Equity Among US Indigenous Peoples: Understanding the Intersections of Historical Oppression, Resilience, and Transcend...
1 Introduction
2 The Framework of Historical Oppression, Resilience, and Transcendence (FHORT)
3 Resilience, Survivance, and Transcendence
4 Present-Day Manifestations of Historical Oppression Along with Indigenous Promotive and Protective Factors, Resilience, and ...
4.1 Sociostructural Inequities
4.2 Educational, Employment and Incarceration Disparities
4.3 Physical Health Inequities
4.3.1 Promotive Factors: Connection to Place, Subsistence, and Foodways
4.4 Mental Health Inequities
4.4.1 Promotive Factors: Enculturation and Cultural Traditions
4.5 Psychosocial Health Inequities
4.5.1 Violence Against Indigenous Women
4.5.2 Maternal Child Health
4.5.3 Promotive Factor: Female-centered and Egalitarian Gender Role Structures
4.5.4 Promotive Factor: Family Kinship Bonds
4.5.5 Promotive Factors: Spirituality, Faith and Cultural Healing
5 Discussion
6 Conclusion and Future Direction
References
Part X: Social Science Research and Climate Change
Environment Injustice and Public Health
1 Introduction
2 Understanding Environmental Injustice as a Public Health Issue
2.1 Underlying History and Conceptual Framework
2.2 Examples of Environmental Injustice in the USA
2.2.1 Cancer Alley
2.2.2 Hurricane Katrina
2.2.3 The Flint Water Crisis
3 Patterns of Environmental Injustice on a Global Scale
3.1 Transfer of Electronic Waste
3.2 Managing Medical Waste
3.3 Global Mining Practices
3.4 Farmworker Rights
4 Environmental Justice in the Era of Climate Change and COVID-19
4.1 Climate Justice
4.2 The COVID-19 Pandemic and Environmental Justice
5 Addressing Environmental Injustice
5.1 Examples of Progress Toward EJ
5.2 Global and Local Policies Toward Environmental Justice
5.3 Environmental Justice Leaders to Know
6 Conclusion and Future Directions
7 Cross-References
References
Public Health and the Climate Emergency
1 Introduction
2 Definitions, Principles, Determinants, and Framing
3 The Health Effects of Climate Change
4 Prevention
5 Promotion: Health for All
6 Framing
7 Community Organization
8 Conclusion and Future Directions
9 Cross-References
References
Resilient Cities, Healthy Communities, and Sustainable Future: How Do Nature-Based Solutions Contribute?
1 Introduction
2 How NBS Contribute to City´s Resilience and Sustainability?
3 How NBS Support the Health and Well-Being of Urban Communities?
4 What Social and Cultural Factors/Mechanisms and How Can Impact (Support or Hinder) NBS Implementation?
5 What Is the Role of Inter- and Transdisciplinary Approaches and a Concept of Co-Creation for Planning, Designing, Implementi...
6 Discussion
7 Conclusion and Future Directions
8 Cross-References
References
Climate Change and Infectious Diseases Among Vulnerable Populations
1 Introduction
2 Four Pathways to Impact
2.1 Pathway 1: Vectors
2.2 Pathway 2: Vulnerability
2.3 Pathway 3: Biospheric-Demographic Interactions
2.4 Pathway 4: Health and Public Health Systems
3 What ``Vulnerable´´ Means in a Population Sense
4 Vector-Borne Diseases
4.1 Dengue
4.2 Neglected Arboviruses
4.3 Malaria
5 Water-borne Diseases
5.1 Cholera
5.2 Schistosomiasis
6 Respiratory Diseases
6.1 COVID-19
6.2 Chlamydiae
7 Conclusion and Future Directions
References
Environmental Health Disparities and Maternal and Child Health: Applying the Life Course Approach
1 Introduction
2 The Life Course Approach
3 Secondhand Smoke
4 Lead
5 Asthma
6 Autism Spectrum Disorder
7 Recommendations for Programs, Policies, and Research
7.1 Secondhand Smoke
7.2 Lead
7.3 Air Pollution
7.4 Pesticides
8 Conclusion and Future Directions
9 Cross-References
References
Covid-19 and Environmental Racism
1 Introduction
2 Definitions
3 Challenges
3.1 Transportation
3.2 Air
3.3 Water
3.4 Housing
3.5 Food
3.6 Working Conditions
3.7 Hazardous Waste
3.8 Psychosocial Stressors and Police Brutality
4 Recommendations
4.1 Improved Policies
4.2 Increased Funding
4.3 Comprehensive National Programs
4.4 Education and Enhanced Curriculum
5 Conclusion and Future Directions
References
Energy Insecurity and Social Determinants of Health
1 Introduction
1.1 The Social Determinants of Health
1.2 A Brief Overview of Energy Insecurity
2 Energy Insecurity: Moving Beyond Economic Thresholds
3 Place
3.1 Detroit, Michigan and Spatial Analysis
3.2 Washington Heights, New York City and Community Survey Methods
3.3 Eastern North Carolina and Grid Infrastructure
3.4 Australia and Climate Zones
3.5 Energy Insecurity in Ghana and Nigeria
4 Race
5 Neighborhood Effects
6 Housing and Tenure
7 Extreme Weather and Climate Change
8 Socioeconomic Status and Poverty
9 Age and Life Course
10 Medical Vulnerability
11 Covid as a Case Example
12 Conclusion and Future Directions
References
But This Is Not New: Climate Change and Global Mental Health
1 Introduction
2 Climate Change
3 Sustainable Development for Mental Health
4 But This Is Not New
5 Global Mental Health Research
6 But This Is New(ish)
7 ARTS Framework for Mental Health
8 Application of ARTS
9 Conclusion and Future Directions
10 Cross-References
References
Climate Change and the Role of Public Health in Egypt
1 Introduction
2 What Is Climate Change?
2.1 What Causes Climate Change?
2.2 How Will Climate Change Affect Humans?
2.3 How Air Pollution Affects Health?
2.4 Who Is Impacted Most by Climate Change?
2.4.1 People in Developing Nations, Especially Coastal Countries and Small Island States
2.4.2 Communities Suffering from Environmental Racism
2.4.3 Marginalized Women and Girls
2.4.4 Children
3 Climate-Sensitive Health Risks
3.1 Climate Change Impacts Health Both Directly and Indirectly and Is Strongly Mediated by Environmental, Social, and Public H...
3.2 How Can We Measure Climate Change Impact on Population Health?
3.3 Are Climate Change Diseases and Injuries Preventable?
4 Actions to Be Taken Toward Climate Change
5 The Relation Between Developmental Goals/Sustainable Developmental Goals (DGs-SDGs) and Climate Changes
6 Is Climate Change a Public Health Issue?
7 Focus on Promoting Early Action by Multiple Groups
8 Focus on Cobenefits and Common Interests
9 Focus on Adaptation, Mitigation, and Resilience
10 Egypt Vulnerability to Climate Change Risk
10.1 How Does Egypt Deal with Climate Change and What Actions Can the Government Take to Stop Climate Change?
10.2 Some Egyptian Initiatives as Actions to Adopt and Mitigate CC on the National Level
10.2.1 Decent Life Initiative
10.2.2 Plan to Reduce Emissions
10.2.3 Plan to Line the Canals
10.2.4 Health Initiatives
10.3 Egypt on Continent Level
10.4 Egypt on the Global Level Applied the Following
11 Conclusion and Future Directions
References
Locating Rhyme: Historical Climate Lessons from Fourteenth Century Vietnam
1 Introduction
2 History as Instrument
3 Before the Storm: Setting the Stage
4 Looming Clouds: War´s Aftermath and Societal Breakdown
5 The Little Ice Age (1): Crisis on the Domestic Front
6 ``Fish in Water Boiling´´: Corruption and Ineffective Leadership
7 The Little Ice Age (2): The Long Shadow of Foreign Affairs
8 Conclusion and Future Directions
References
Index
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Pranee Liamputtong Editor
Handbook of Social Sciences and Global Public Health
Handbook of Social Sciences and Global Public Health
Pranee Liamputtong Editor
Handbook of Social Sciences and Global Public Health With 93 Figures and 41 Tables
Editor Pranee Liamputtong College of Health Sciences VinUniversity Hanoi, Vietnam
ISBN 978-3-031-25109-2 ISBN 978-3-031-25110-8 (eBook) https://doi.org/10.1007/978-3-031-25110-8 © Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Paper in this product is recyclable.
In loving memory of my youngest daughter Emma Inturatana Rice who physically left us too soon. You will always be living in my heart, my baby.
Preface
Social sciences such as medical sociology and medical anthropology are the disciplines that examine the social causes and consequences of health and illness. Major areas of investigation include the social/cultural determinants of health and disease, the social/cultural behavior of patients and healthcare providers, the social functions of health organizations and institutions, the social patterns of the utilization of health services, the relationship of healthcare delivery systems to other social institutions, and social policies toward health. What makes social sciences important is the critical role social and cultural factors play in determining or influencing the health of individuals, communities, and the larger society. Social conditions and situations not only promote and, in some cases, cause the possibility of illness and disability but also enhance prospects of disease prevention and health maintenance. It is evidence that medicine cannot be the only answer to improve the health of people. Social sciences have played a significantly crucial role in the explanation of health and illness in different population groups, the improvement of health, and the prevention of illnesses in the globe. The essence of social sciences in global public health can be timely seen at the present time due to the pandemic of Covid-19. Until the development of a vaccine that can stop the spread of, or eradicate, the disease, people around the globe have to deal with the virus physically, mentally, and economically. Do we know how people in the globe deal with the virus, and their fear and other emotional burdens when trying to live through each day? What is the impact of the lock down on their mental health and well-being? Who are the most vulnerable to the impact of the pandemic? Is the pandemic a human rights issue that we have to address in many parts around the globe? And even when the vaccines are available, why are some people reluctant to get vaccinated or why do people refuse or even anti it? This is when social sciences can be valuable. Knowledge generated via social science theories and research methodologies will allow healthcare providers, policymakers, and politicians to understand and appreciate the lived experience of their people, and to provide sensitive health and social care to them at the time they really need. In this Handbook, I outline the important role of social sciences in global public health. The Handbook covers the following:
vii
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Preface
• Discussions of the social science disciplines and their essence for global public health • Theoretical frameworks in social sciences that can be used to explain health and illness in population groups • Methodological inquiries that social science researchers use to examine global public health issues • Examples of social science research in several global public health areas and concerns such as chronic illnesses, emerging/infectious diseases, mental health, sexual and reproductive health, and climate change • Example of social science research in various population groups such as women and men, children and older people, and marginalized/oppressed groups around the globe Readers will gain valuable knowledge from all parts of the Handbook. I hope you also enjoy reading through each chapter as well. I would like to wholeheartedly thank all contributors who worked very hard to get their chapter(s) to me during a difficult time during a recent pandemic. You certainly deserve a trophy for this accomplishment. I also want to thank Janet Kim of Springer who saw the value of this Handbook and contracted me to edit it. Lastly, I want to thank Shobana Lenin and her production team who also worked hard to get this Handbook published. Hanoi, Vietnam August 2023
Pranee Liamputtonng
Contents
Volume 1 Part I
.......................................
1
The Essence of Social Sciences in Global Public Health: An Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pranee Liamputtong
3
Part II
Introduction
Social Sciences and Health Disciplines . . . . . . . . . . . . . . . . . .
21
Medical Sociology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Paul R. Ward
23
Medical Anthropology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Richard Chenhall, Kate Senior, and Daniela Heil
39
..............................................
57
...
73
Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Laura Vanderbloemen, Hao Thi My Nguyen, Moleen Maramba, and Dev Kapil
109
Critical Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Heath Pillen
127
Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Marguerite C. Sendall, Eva Neely, Ann Pederson, and Jody O. Early
143
........................
169
Primary Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Elizabeth Halcomb and Christine Ashley
181
Social Work Neil Hall
Social Epidemiology and Its Contribution to Global Public Health Patricia Chiao-Tzu Lee, Cathy Chao-Yuan Wu, and Josh Ting
Community Nursing and Global Health Yvonne Parry
ix
x
Contents
Health and Medical Humanities in Global Health: From the Anglocentric to the Anthropocene . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Claire Hooker, Brid Phillips, and Sandra Carr
203
..................
221
...
239
Traditional Medicine and Global Public Health Kevin Dew and Supuni Liyanagunawardena
Embedding Social Medicine in the Health Professions Curriculum Zarrin Seema Siddiqui and Nguyen Le My Anh Part III
Theoretical Frameworks and Social Sciences . . . . . . . . . . .
255
Strong Structuration Theory (SST) and Global Public Health . . . . . . . Maureen Seguin
257
Theories of Practice and Global Public Health . . . . . . . . . . . . . . . . . . . Muhammad Naveed Noor, Isaac Yeboah Addo, and Sujith Kumar Prankumar
273
Gender Theory and Global Public Health . . . . . . . . . . . . . . . . . . . . . . . Shane A. Kavanagh, Greer Lamaro Haintz, Hayley McKenzie, Tricia Ong, and Feyisola Opeyemi Adeleye
291
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313
Intersectional Risk Theory and Global Public Health . . . . . . . . . . . . . . Anna Olofsson and Katarina Giritli Nygren
333
Intersectionality and Global Public Health Emma Heard and Britta Wigginton
Decolonial Methodology in Social Scientific Studies of Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Assata Zerai, Anniah Mupawose, and Sharon Moonsamy
351
Feminist Pedagogy, the Women’s Health Movement, and the Rise of the Anti-diet Health Professional . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Natalie Jovanovski
375
Human Rights and Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . Ann Taket
395
Social Determinants of Health and Global Public Health . . . . . . . . . . . Rayner K. J. Tan and Megan Lourdesamy
413
Social Justice and Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . Lactricia Maja, Sarah Day, and Maham Hasan
427
Health Promotion Paradigms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Marguerite C. Sendall, Eva Neely, Ann Pederson, and Jody O. Early
445
Contents
xi
Accessing Health Care in Global Public Health: The History of Conceptual Frameworks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . An Nguyen
467
Cultural-Historical Activity Theory [CHAT] and Health in Faith Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Elias Mpofu
481
Institutional Change and Healthcare Social Workers’ Identity: An Analysis from the Street-Level Perspective . . . . . . . . . . . . . . . . . . . Andrea Bellini and Dario Raspanti
503
The Ethics of AI and Robotics in Public Health: An East Asian Perspective . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Billy Wheeler
523
The Ethics of Vaccines During COVID-19: A Global Public Health Approach Through Utilitarianism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Ranya Kaddour, Alex Workman, and Pranee Liamputtong
545
The “Difficult Patient”: Dominant Logics and Misfits in Medicine . . . . Jelmer Brüggemann, Lisa Guntram, and Ann-Charlotte Nedlund
565
........................................
579
Religion and Health Elias Mpofu
Part IV Research Methodologies, Social Sciences, and Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social Constructionism, Power, and Understanding the Health Needs of Different Groups Engaged in a Shared Reality . . . . . . . . . . . . . . . . . Matthew Ankers, Yvonne Parry, and Eileen Willis
601
603
Symbolic Interactionism and Global Public Health . . . . . . . . . . . . . . . . Michael J. Carter and Leah V. Lamoreaux
619
Critical Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Yvonne Parry
637
Feminist Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Vuyolwethu Ncube and Sarah Day
653
Qualitative Research Inquiry and Global Public Health . . . . . . . . . . . . Pranee Liamputtong and Zoe Sanipreeya Rice
669
Cultural Determinants of Health, Cross-Cultural Research and Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Zoe Sanipreeya Rice and Pranee Liamputtong Ecofeminist Participatory Action Research for Planetary Health . . . . . Naomi Joy Godden, Trimita Chakma, and Aaron Jenkins
689 703
xii
Contents
Human Rights Methodologies in Minority Research . . . . . . . . . . . . . . . Alex Workman, Patricia M. Griffin, and Pranee Liamputtong
727
Upending Quantitative Methodology for Use in Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dan J. Spitzner
743
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765
Mixed Methods Research in Global Public Health Dan J. Spitzner and Cara Meixner
Volume 2 Part V
Research Methods, Social Sciences, and Global Health . . .
Digital Health Research Methods and Global Public Health . . . . . . . . . Rayner K. J. Tan, Pearlyn H. M. Neo, Jane M. Lim, and Suan Ee Ong Coproducing Online Focus or Consultation Groups for Health and Social Care Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Kim Heyes
785 787
805
Community Mapping Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Naiema Taliep and Ghouwa Ismail
823
Photovoice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Nick Malherbe, Shahnaaz Suffla, Mohamed Seedat, and Umesh Bawa
845
Walking Interviewing Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sarah Day and Josephine Cornell
859
Digital Storytelling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Alice Fiddian-Green, Aline Gubrium, and Amy Hill
877
Concept Mapping Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sharanya Napier-Raman, Scott Rosas, Syeda Zakia Hossain, Elias Mpofu, Mi-Joung Lee, Pranee Liamputtong, Tinashe Dune, and Virginia Mapedzahama
899
Experience-Based Codesign (EBCD) for Sensitive Research . . . . . . . . . Elaine Craig, Kim Heyes, Kelly Bracewell, Alina Haines-Delmont, Joy Duxbury, and Khatidja Chantler
925
Researching Female Sexual Dysfunction in Sensitive Populations: Issues and Challenges in the Methodologies . . . . . . . . . . . . . . . . . . . . . . Rosediani Muhamad, Pranee Liamputtong, and Dell Horey Consensus Methods for Health Research in a Global Setting . . . . . . . . Simon A. Carter, Allison Tong, Jonathan C. Craig, Armando Teixeira-Pinto, and Karine E. Manera
941 959
Contents
xiii
The Delphi Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Ghouwa Ismail and Naiema Taliep
985
Social Network Methods and Global Health . . . . . . . . . . . . . . . . . . . . . 1005 Janet C. Long, Kate Churruca, and Louise A. Ellis Social Surveys and Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1025 Nguyen Khoi Quan and Pranee Liamputtong Systematic Review and Evidence Synthesis in Public Health Nguyen Khoi Quan and Pranee Liamputtong
. . . . . . . . 1045
Visualizing Relational Autonomy Through Mud Maps: A Methodological Reflection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1071 Dorinda ’t Hart Part VI
The Role of Social Science in Infectious Illnesses
.......
1095
Social Sciences in Emerging Infectious Disease . . . . . . . . . . . . . . . . . . . 1097 Peter Bai James, Rashon Lane, and Abdulai Jawo Bah The Role of Social Science in Influenza and SARS Epidemics Santiago Ripoll and Annie Wilkinson
. . . . . . . 1109
Beyond the Disease: The Socioeconomic Drama of the Covid-19 Pandemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1131 Vincenzo Auriemma, Domenico Cafaro, Arianna Pelati, and Valeria Saladino The Role of Social Science in Shaping the Sexually Transmitted Diseases (STI) Discourse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1151 Victor Minichiello, John Scott, Christian Grov, and Viraj Patel Antimicrobial Resistance: Social Science Approaches to the Microbiosocial . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1169 Andrea Whittaker and Trang Do Intersectionality Theory and Its Application in the COVID-19 Pandemics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1189 Míriam Acebillo-Baqué and Lara Maestripieri Social Science Priorities and Response to COVID-19 . . . . . . . . . . . . . . 1213 Megan Schmidt-Sane, Tabitha Hrynick, and Santiago Ripoll Malaria, Its Prevention and Control: Perspectives from the Social Sciences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1231 Christopher Pell
xiv
Contents
The Role of Social Science in Hepatitis Jake Rance and Carla Treloar Part VII
. . . . . . . . . . . . . . . . . . . . . . . . . 1251
The Role of Social Sciences in Chronic Illnesses . . . . . . . .
1271
The Contributions of Social Science to the Study of Breast Cancer . . . 1273 Trang Do From Acute Infection to Chronic Health Condition: The Role of the Social Sciences on the HIV/AIDS Global Epidemic . . . . . . . . . . . . . 1293 Muhamad Alif Bin Ibrahim and Lai Peng Ho Social Science Research and Sickle Cell Disorders Maria Berghs and Bassey Ebenso
. . . . . . . . . . . . . . . . 1315
The Role of Social Science in Dementia: Biopsychosocial Approaches . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1333 Elias Mpofu, Rong-Fang Zhan, Idorenyin Udoh, Rifat Afrin, Zenaida P. Simpson, Arthur Chaminuka, and Cheng Yin The Role of Social Science in Conflict Situations . . . . . . . . . . . . . . . . . . 1353 Natascha Mueller-Hirth The Role of Social Sciences in Advancing a Public Health Approach to Violence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1371 Nechama Brodie, Brett Bowman, Vuyolwethu Ncube, and Sarah Day The Role of Social Sciences in Epilepsy . . . . . . . . . . . . . . . . . . . . . . . . . 1391 Chris L. Peterson and Christine Walker Intimate Partner Violence and Global Public Health Alex Workman
. . . . . . . . . . . . . . 1411
Intersections of Culture and Structure and Intimate Partner Violence Among Migrant and Refugee Communities . . . . . . . . . . . . . . 1429 Kathryn Wenham, Bernadette Sebar, Patricia Chiao-Tzu Lee, and Neil Harris The Role of Social Science in Behavior Addiction . . . . . . . . . . . . . . . . . 1447 Lena Hübner The Role of Social Science in Substance Use Disorders and Addiction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1467 Wendy Mincer and Elias Mpofu Assisted Dying as a Global Public Health Priority . . . . . . . . . . . . . . . . . 1489 Annetta H. Mallon At the End of Life: Health, Death, and Cultural Practices . . . . . . . . . . 1515 Nguyen Hoang Long
Contents
xv
Volume 3 Part VIII Social Science Research, Sexuality, Sexual and Reproductive Health, and Mental Health . . . . . . . . . . . . . . . . . . . . .
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Motherhood . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1535 Eva Neely, Ying Jin, Chloe Parton, and Felicity Ware Infertility as a Social and Public Health Issue . . . . . . . . . . . . . . . . . . . . 1559 Alexandra Hawkey Abortion, Stigma, and Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . . 1579 Joe Strong, Ernestina Coast, and Rishita Nandagiri Childbirth and Birth Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1601 Bregje Christina de Kok Sexual and Reproductive Health and Young People: A Social Science Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1627 Rashmi Pithavadian, Pranee Liamputtong, Elias Mpofu, Syeda Zakia Hossain, Michaels Aibangbee, and Tinashe Dune Sexual and Reproductive Health of People with Physical Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1649 An Nguyen and Pranee Liamputtong Mental Health Among Young People . . . . . . . . . . . . . . . . . . . . . . . . . . . 1669 Mohammad Izzat Morshidi and Mui-Hua Catherine Toh Mental Health and Indigenous People . . . . . . . . . . . . . . . . . . . . . . . . . . 1689 Elias Mpofu, Aunty Kerrie E. Doyle, Elias Machina, Maximus Sefotho, and Kendal Brune Mental Health Among Homeless People Jessica A. Heerde and Jennifer A. Bailey
. . . . . . . . . . . . . . . . . . . . . . . . 1705
Dementia and Older Persons in USA . . . . . . . . . . . . . . . . . . . . . . . . . . . 1723 Elias Mpofu, John Alagood, Xiaoli Li, Kayi Ntinda, and Cheng Yin The Role of Social Sciences in Understanding Mental Health and LGBTIQA+ People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1743 Andrea Waling, Jacob Thomas, Christopher A. Pepping, and Victor Minichiello
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Part IX Social Science Research and the Health of Socially Excluded and Marginalized Groups . . . . . . . . . . . . . . . . . . . . . . . . . .
Contents
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Post-migration Social Determinants of Health for People from Refugee and Asylum-Seeking Backgrounds . . . . . . . . . . . . . . . . . . . . . . 1765 Anna Ziersch and Clemence Due The Health of People Experiencing Homelessness . . . . . . . . . . . . . . . . . 1783 Jessica A. Heerde, Adrian B. Kelly, and John W. Toumbourou Toward the Betterment of Prisoners’ Lives: The Role of Social Science Research-Based Knowledge and Evidence . . . . . . . . . . . . . . . . 1801 James E. Sutton Sex Trafficking of Women and Children: Male Sexual Violence, Public Health, and the International Survivor Movement . . . . . . . . . . . 1819 Tegan Larin and Natalie Jovanovski Sexual Justice and Sexualities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1841 Josephine Cornell, Jeff Hearn, Kopano Ratele, and Shose Kessi Gender Minority Health Vulnerabilities During Covid-19 Pandemic Across Southeast Asian Waters: The Cases of Vietnam and the Philippines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1863 Huong Thu Nguyen Social Justice and Older Persons: Impact of the COVID-19 Pandemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1881 Carole Cox Understanding Statelessness and Health Through Social Science . . . . . 1897 Nannie Sköld Health for All? A Global Health Approach for Justice Reinvestment and Indigenous People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1917 Krystal Lockwood, Alex Workman, and Pranee Liamputtong COVID-19 Pandemic and the Health and Well-Being of Vulnerable People in Vietnam . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1939 Hai-Anh H. Dang and Minh N. N. Do Health Equity Among US Indigenous Peoples: Understanding the Intersections of Historical Oppression, Resilience, and Transcendence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1965 Catherine E. McKinley
Contents
Part X
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Social Science Research and Climate Change . . . . . . . . . . .
1985
Environment Injustice and Public Health Anuli U. Njoku and Natalie R. Sampson
. . . . . . . . . . . . . . . . . . . . . . . 1987
Public Health and the Climate Emergency Andrew Harmer
. . . . . . . . . . . . . . . . . . . . . . 2007
Resilient Cities, Healthy Communities, and Sustainable Future: How Do Nature-Based Solutions Contribute? . . . . . . . . . . . . . . . . . . . . 2031 Diana Dushkova and Dagmar Haase Climate Change and Infectious Diseases Among Vulnerable Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2057 Andrew W. Taylor-Robinson and Olav T. Muurlink Environmental Health Disparities and Maternal and Child Health: Applying the Life Course Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . 2077 Fathima Wakeel and Anuli U. Njoku Covid-19 and Environmental Racism Anuli U. Njoku and Marcelin Joseph
. . . . . . . . . . . . . . . . . . . . . . . . . . 2099
Energy Insecurity and Social Determinants of Health . . . . . . . . . . . . . . 2119 Miranda Simes, Farzana Khan, and Diana Hernández But This Is Not New: Climate Change and Global Mental Health . . . . 2139 Paul Illingworth Climate Change and the Role of Public Health in Egypt . . . . . . . . . . . . 2157 Thoraya Abd El Fattah and Mona Zakaria Elbaz Locating Rhyme: Historical Climate Lessons from Fourteenth Century Vietnam . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2175 Jason A. Picard Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2191
About the Editor
Pranee Liamputtong is currently a professor in behaviour sciences at the College of Health Sciences, VinUniversity, Vietnam. She is also an adjunct professor at the Translation Health Research Institute (THRI) at Western Sydney University and at the School of Public Health, La Trobe University in Australia. Previously, she held a position of Professor of Public Health at the School of Health Sciences, Western Sydney University, and Personal Chair in Public Health at the School of Public Health, La Trobe University, Australia. Pranee has also taught in the School of Sociology and Anthropology and worked as a public health research fellow at the Centre for the Study of Mothers’ and Children’s Health, La Trobe University. Pranee’s particular interests include issues related to socio-cultural influences on childbearing, childrearing, motherhood, infant feeding practices, and reproductive and sexual health. Her current research includes motherhood, HIV/AIDS, breast cancer, sexuality and sexual violence, and the health impact of air pollution in Asia. Pranee has published several books and a large number of papers in these areas. These include Maternity and Reproductive Health in Asian Societies (with Lenore Manderson, Harwood Academic Press, 1996); Asian Mothers, Western Birth (Ausmed Publications, 1999); Living in a New Country: Understanding Migrants’ Health (Ausmed Publications, 1999); Among Women and Reproduction (Bergin & Garvey, 2000); Coming of Age in South and Southeast Asia: Youth, Courtship and Sexuality (with Lenore Manderson, Curzon Press, 2002); and Health, Social Change and Communities (with Heather Gardner,
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About the Editor
Oxford University Press, 2003). Her more recent books include Reproduction, Childbearing and Motherhood: A Cross-Cultural Perspective (Nova Science Publishers, 2007); Childrearing and Infant Care Issues: A CrossCultural Perspective (Nova Science Publishers, 2007); The Journey of Becoming a Mother Amongst Thai Women in Northern Thailand (Lexington Books, 2007); Population, Community, & Health Promotion (with Sansnee Jirojwong, Oxford University Press, 2008); Infant Feeding Practices: A Cross-Cultural Perspective (Springer, New York, 2011); Motherhood and Postnatal Depression: Narratives of Women and Their Partners (with Carolyn Westall, Springer, Dordrecht, The Netherlands, 2011); Health, Illness and WellBeing: Perspectives and Social Determinants (with Rebecca Fanany and Glenda Verrinder, Oxford University Press, 2012); Contemporary Socio-cultural and Political Perspectives in Thailand (Springer, 2014); Public Health: Local and Global Perspectives (Cambridge University Press, 2016, second edition in 2019, third edition in 2022); and Social Determinants of Health (Oxford University Press, 2019). Pranee was a general editor of a book series, HIV/ AIDS and Cross-Cultural Research. The series is being published by Springer in the Netherlands between 2012 and 2020. Her two books in the series were published by Springer in 2013. These were Stigma, Discrimination and Living with HIV/AIDS and Women, Motherhood and Living with HIV/AIDS. The third one in the series is Children, Young People and Living with HIV/AIDS: A Cross-Cultural Perspective, published in 2016. Pranee has also written and edited a number of research method books. Her first research method book was Qualitative Research Methods: A Health Focus (with Douglas Ezzy, Oxford University Press, 1999); the second edition of the book was titled Qualitative Research Methods (2005); the third edition was published in 2009; the fourth edition was published in 2013; and the fifth edition was published in 2020. Pranee has also published a book on doing qualitative research online: Health Research in Cyberspace: Methodological, Practical and Personal Issues (Nova Science Publishers, 2006). Her other books include Researching the Vulnerable: A Guide to Sensitive Research Methods (Sage, 2007); Undertaking Sensitive
About the Editor
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Research: Managing Boundaries, Emotions and Risk (with Virginia Dickson-Swift and Erica James, Cambridge University Press, 2008); Knowing Differently: Arts-Based and Collaborative Research Methods (with Jean Rumbold, Nova Science Publishers, 2008); Doing Cross-Cultural Research: Ethical and Methodological Issues (Springer, 2008); Performing Qualitative CrossCultural Research (Cambridge University Press, 2010); Research Methods in Health and Evidence-Based Practice (Oxford University Press, 2010, 2013, 2017, 2022); Focus Group Methodology: Principles and Practice (Sage, 2011, online version in 2016); and Using Participatory Qualitative Research Methodologies in Health (with Gina Higginbottom, Sage, 2015). In 2019, her Handbook of Research Methods in Health Social Sciences was published by Springer. She has recently published a number of books including How to Conduct Qualitative Research in Social Science (Edward Elgar, 2022), Handbook of Qualitative Cross-Cultural Research: A Social Science Perspective (Edward Elgar, 2023), and Handbook of Social Science in Global Public Health (Springer, 2023).
About the Contributors
Míriam Acebillo-Baqué is a postdoctoral researcher at INGENIO (CSIC-UPV). Her research focuses on areas such as intersectional perspectives on inequality and political participation, transnational migrant agency, civil society participation in public policy, and transformative innovation policies. Isaac Yeboah Addo has extensive research experience in the population health discipline. His broad research interests comprise social justice, migration and health, dietary and physical activity behavior, obesity, non-communicable diseases (NCDs), infectious diseases, drug and alcohol research, and sexual health. He is available to connect with institutions and scholars with similar interests. Feyisola Adeleye is a student at Deakin University where he completed a Master’s in Health and Human Services Management with a specialization in research. His interest in gender studies stems from his Master’s dissertation, and he aspires to pursue a PhD to further build on gender transformative approaches aimed at addressing gender inequalities. Rifat Afrin is currently pursuing a doctoral degree in Health Sciences at the University of North Texas (UNT). Her concentration is Applied Aging and Rehabilitation Science. She also received her MS in Interdisciplinary Studies from UNT. Her research interests are online health information seeking and policies for aging. Michaels Aibangbee is a psychotherapist and a PhD candidate at Western Sydney University. His thesis focuses on understanding the perspectives and experiences of young migrants and refugees’ sexual reproductive health and rights. Michaels focuses on engaging stakeholders, advocating, navigating, and bridging existing systems to support the holistic well-being of the CALD population. John Alagood is a doctoral student in applied gerontology at the Department of Rehabilitation and Health Services of the University of North Texas. His research interests include social engagement technology for older adults and the role of advocacy in aging-driven residential transitions.
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About the Contributors
Nguyen Le My Anh is a nutritionist with a BSc in nutrition and medical sciences from University College London. Since 2021, she is working as a teaching assistant at the College of Health Sciences, VinUniversity. Her research interests are in nutrition for women’s health, nutrition for child development, and healthy ageing. Matthew Ankers is a registered nurse and associate lecturer in the College of Nursing and Health Sciences at Flinders University. His PhD research investigated the capacity raising activities of non-government organization working with disadvantaged children in Siem Reap, Cambodia. Matthew has research interest in the social health sciences and disadvantaged children and families. Christine Ashley is an experienced nurse and post-doctoral researcher who works as a Project Officer in the School of Nursing at the University of Wollongong. Her doctoral work focussed on the transition of nurses from acute to primary care employment. Vincenzo Auriemma is a post-doc researcher at the University of Salerno, Italy. He is an editor for Frontiers and for IntechOpen and collaborates with different structures to promote neurosociology. He is the author of several international scientific articles and books and is the scientific director of the Network “Pass the ball.” Abdulai Jawo Bah is a PhD student in Global Mental Health in fragile and postconflict countries at the Queen Margaret University in Scotland and a lecturer at the College Medicine and Allied Health Sciences, University of Sierra Leone. His PhD project focusses on developing a collaborative care model for perinatal common mental disorders. His main research interest includes mental health and health systems strengthening in in fragile and post-conflict countries settings. Jennifer A. Bailey is the director of research and a principal research scientist at the Social Development Research Group (SDRG) in the School of Social Work at the University of Washington. Her research is focused on understanding malleable predictors of important social and public health outcomes, such as substance use, problem behavior, homelessness, and mental health problems in adolescence and adulthood. Umesh Bawa is a clinical psychologist in the Department of Psychology at the University of the Western Cape, Cape Town, South Africa. His research, training, and clinical interests are in peace promotion, the impact of violence and trauma, and the re-integration of ex-combatants and child soldiers in post-conflict countries. Andrea Bellini has a PhD in Sociology and holds a position as senior assistant professor of sociology of economic and labor processes at the Department of Social and Economic Sciences (DiSSE) of the Sapienza University of Rome, Italy. His main research areas are the sociology of professions and industrial relations.
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Kelly Bracewell undertakes teaching and research across a range of subjects related to interpersonal violence and vulnerable groups. She is active within the domestic violence and abuse sector and maintains close links with local partners. Kelly works with policy makers, commissioners, charitable funders, and government departments. Jelmer Brüggemann is an associate professor at the Department of Thematic Studies – Technology and Social Change, and affiliated to the Centre for Medical Humanities and Bioethics, both at Linköping University, Sweden. His research lies mainly within the area of medical sociology with a current focus on how ideas of the active patient and patient involvement are understood and made sense of in care practices. Kendall R. Brune is a senior manager and healthcare executive at the Meharry Medical College, TN, and with over 30 years’ experience in healthcare. He also has extensive experience in working with tribal nations in the United States in the area of healthcare services. Domenico Cafaro is a psychologist, specialized in sport sciences and techniques. Since 2015, Domenico has been a Physical Education Teacher, athletics instructor, and athletic trainer. Domenico graduated and specialized in Cognitive Psychology and Neuroscience (2021) and specialized in Hypnotic Techniques at PNL meta (Bologna). Sandra Carr is a professor of health professions education at the University of Western Australia. She leads health humanities education and research locally in the Doctor of Medicine and through an undergraduate major in Humanities for Health and Medicine. Internationally, she has led the WUN Health Humanities Initiative: toward the development of the patient-centered and compassionate Health Professional through education. Michael J. Carter is a professor of sociology at California State University, Northridge. His research has examined moral identity processes, deaf identity processes, identity change, and how identities operate in digital media environments. His work has appeared in a variety of academic journals, including Current Sociology, Social Psychology Quarterly, Sociological Perspectives, and American Sociological Review. Simon Carter is a consultant pediatric nephrologist at the Royal Children’s Hospital, Melbourne. His research interests include using qualitative and consensusbuilding methods to identify critically important outcomes among major stakeholder groups. He sits on the Australasian Kidney Trials Network (AKTN) scientific committee and the Standardized Outcomes in Nephrology coordinating committee (SONG).
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About the Contributors
Trimita Chakma is a feminist activist and researcher with over a decade’s experience in campaigning for women’s human rights. Her research interest includes Feminist Participatory Action Research as a decolonial methodology, the politics of climate justice, and feminist economics. She is currently undertaking an MA at Ewha Woman’s University in South Korea. Arthur Chaminuka is a health services research program doctoral student at the University of North Texas, in the Rehabilitation and Health Services department. Arthur completed a master’s degree in Health Services Administration, majoring in data analytics at the University of North Texas. His research interests include housing, HIV/AIDS, older adults (gerontology) immunology, rehabilitation, and disability. Khatidja Chantler is a professor of gender, equalities, and communities at Manchester Metropolitan University. Khatidja’s key areas of research expertise are gender-based violence, particularly within minoritized communities, self-harm, gender, and ethnicity. She is also an internationally known expert on forced marriage research. Richard Chenhall is a medical anthropologist who conducted research with Indigenous communities for over 20 years in the areas of the social determinants of health, alcohol and other drugs, sexual health, and youth well-being. Kate Churruca is a National Health and Medical Research Council Emerging Leadership Fellow at the Australian Institute of Health Innovation, Macquarie University. Her research examines organizational safety culture in hospitals and residential aged care facilities. She is internationally recognized for her work utilizing complexity science and implementation science to understand and support healthcare improvement. Josephine Cornell is a lecturer in psychology. Her work has largely been situated within critical social and community psychology. In particular, Josephine’s research interests are focused on issues of identity, belonging, discrimination, violence, resistance, and social change, and she frequently employs participatory action research methods, such as Photovoice. Carole Cox is a professor at the Graduate School of Social Service, Fordham University. Her primary interest is the social policy with a focus on older adults and their families. During the COVID-19 pandemic, she developed a virtual empowerment program specifically for grandparents raising grandchildren. The program continues to be offered as it meets many needs of their vulnerable caregivers.
About the Contributors
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Elaine Craig now works in the interdisciplinary Mental Health team of MMU’s Nursing Department. Her team improves, evaluates, and designs healthcare interventions spanning criminology, safeguarding, psychology, and vulnerable populations. Elaine’s research is in the field of psycho-traumatology, with particular emphasis on abuse-related trauma. Jonathan C. Craig is the vice-president and executive dean of the College of Medicine and Public Health and a Matthew Flinders Distinguished Professor. He is a practicing pediatric nephrologist and clinical epidemiologist, especially committed to improving the health of people with chronic kidney disease, the health of children, and the health and well-being of Indigenous people. He has had continuous NHMRC Program Grant funding for more than 20 years. Hai-Anh H. Dang is a senior economist with Data Production and Methods Unit, Development Data Group, World Bank and is also a visiting senior research fellow with International School, Vietnam National University, Hanoi, and a visiting research fellow with GLO, IZA, and Indiana University. He is a coeditor of the journal Review of Development Economics. He received his PhD in Applied Economics from the University of Minnesota, Twin Cities, the United States. Sarah Day is a public health researcher and serves as the senior research officer at the University of Cape Town’s Cancer Research Initiative. Sarah is particularly interested in locating individuals and communities within broader social contexts when examining the impact of public health issues. Throughout her research career, she has demonstrated her commitment to social justice, criticality and innovative research practice. Kevin Dew is a professor of sociology at Victoria University of Wellington. Current research activities include studies of cancer survivorship, complementary and alternative medicine, and cancer care decision-making in relation to health inequities. He is an associate-editor of Critical Public Health. His books include, for example, Complementary and Alternative Medicine: Containing and Expanding Therapeutic Possibilities. Minh N. N. Do is a visiting lecturer with University of Economics and Business, Vietnam National University, Hanoi. She has worked as a short-term consultant with the World Bank. She is currently working on various projects related to poverty, inequality, and COVID-19. She received her Master degree from Durham University, the United Kingdom. Trang Do is an anthropologist specializing in health (breast cancer, sexual and reproductive health, and transgender health), gender, well-being, and social inclusion. Her research is particularly concerned with how social structural factors influence the ways people, especially those from minority and disadvantaged backgrounds, understand and manage their health and illnesses.
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About the Contributors
Aunty Kerrie Doyle is a professor and an associate dean of indigenous health at the Western Sydney University, Campbelltown Campus. Her research focuses on indigenous health and health organization leadership. She has national and international standing in indigenous health theory. Clemence Due is an associate professor in psychology at the University of Adelaide. Her research expertise is primarily in cross-cultural psychology as well as trauma, grief, and loss. Her current research includes a key focus on the mental health and well-being of people with refugee backgrounds, with research covering areas such as mental health care and service access and the social determinants of health during resettlement. Tinashe Dune is an associate professor in clinical psychology at the Australian College of Applied Professions and an adjunct associate professor with the Translational Health Research Institute at Western Sydney University. Her research and practice focus on the health experiences of marginalized populations. Diana Dushkova is a researcher at the Department Urban and Environmental Sociology of Helmholtz Centre for Environmental Research and associate professor at Peoples’ Friendship University of Russia. Her research interests include socialecological research on the perception and construction of green spaces, landscapes, and environmental risks; analysis and assessment of urban ecosystem services; and nature-based solutions to address societal challenges. Joy Duxbury OBE is a professor of mental health at Manchester Metropolitan University. She has worked on numerous funded projects pertaining to mental health, inclusion, and participation. Research on the exploration of stakeholder perspectives and implementation has been a strong feature of Joy’s work to date. Jody Early is a professor in the School of Nursing and Health Studies at the University of Washington, Bothell, USA. Jody has over 20 years’ experience as a health education specialist. Jody’s research examines the intersections of structural, historical, and social ecological factors on health equity, gender equity, and health behavior and the application of critical and digital methods in health promotion and higher education. Mona Zakaria Elbaz is a professor emeritus of public health and community medicine in AL-Azhar Faculty of Medicine for Girls, Cairo, Egypt. She serves as the editor-in-chief for Journal of Recent Advances in Medicine.
About the Contributors
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Louise Ellis is a senior research fellow at the Australian Institute of Health Innovation, Macquarie University, Australia. She is co-lead of the Complex Systems Research Stream and Senior Research Fellow within the NHMRC Partnership Centre for Health System Sustainability. She has a clinical background as a registered psychologist (>10 years) and is highly regarded for her research on complex systems and implementation science. Thoraya Abd El Fattah is a professor emeritus of public health and community medicine in AL-Azhar Faculty of Medicine for Girls, Cairo, Egypt. She serves on an advisory board editor for Journal of Recent Advances in Medicine. She has conducted reviews for many medical journals. She is also the Secretary general of the Egyptian Medical Women Association (one of the NGOs). Alice Fiddian-Green is an assistant professor of public health in the School of Nursing and Health Professions at the University of San Francisco. She has expertise in using applied public health storytelling approaches to promote collective empathy and health equity. She uses digital and visual community-engaged methods to research the intersections of reproductive justice, trauma, substance use, and institutional violence. Naomi Joy Godden is vice-chancellor’s research fellow at the Centre for People, Place, and Planet at Edith Cowan University, Western Australia. Naomi engages in Feminist Participatory Action Research with social movements to collectively understand intersecting injustices of climate change and develop and implement actions to demand feminist responses in policy and practice. Patricia Griffin is an associate professor of criminal justice at Holy Family University. Her research has examined resilience in policing. She has worked with police organizations to identify and strengthen pathways that support the overall health and wellness of police and public safety personnel. She regularly consults with problemsolving courts to conduct mixed methods evaluations to advance evidence-based outcomes. Christian Grov is a professor of public health and the CUNY Graduate School of Public Health and Health Policy. His research centers on the health of sexual and gender minority individuals, with a particular focus to inform HIV and STI prevention, education, and health policy. He has co-authored more than 200 peer-reviewed articles, as well as several book chapters and a book. Aline Gubrium is a professor in the Department of Health Promotion and Policy at University of Massachusetts Amherst. She has extensive experience in innovative research methodologies that focus on critical narrative intervention, using participatory and arts- and community-based approaches. Her expertise is in health inequities and social inequality, specifically focused on racial/ethnic minority communities and families.
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About the Contributors
Lisa Guntram is an associate professor at the Department of Thematic Studies – Technology and Social Change and coordinator of the Centre for Medical Humanities and Bioethics, both at Linköping University, Sweden. With a specific interest in embodiment and gender, her research often examines how different actors make sense of embodiment and norms in medical encounters. Dagmar Haase is a professor in landscape ecology urban ecology at the Geography Department, Humboldt-Universität in Berlin, and a guest scientist at the Helmholtz Centre for Environmental Research, UFZ, Leipzig. Her core expertise is in first, modeling urban land use change and urban system dynamics, and urban telecouplings. Dagmar is highly interested and involved in green infrastructure perception studies using methods of citizen science. Alina Haines-Delmont is a research fellow within the Faculty of Health, Psychology and Social Care, Department of Nursing at Manchester Metropolitan University. Alina has extensive experience of conducting research with vulnerable populations with complex needs, accessing mental health services and/or in contact with the criminal justice system. Greer Lamaro Haintz is a lecturer in Public Health, Health Promotion, and Health Sciences at Deakin University with an interest in health promotion in cross-cultural settings, particularly regarding sexual and reproductive health issues. She has two decades of experience in fieldwork and academia in health promotion in settings including Australia, South Africa, India, Indonesia, and the Pacific. Elizabeth Halcomb is the inaugural professor of Primary Healthcareare Nursing at the University of Wollongong. Professor Halcomb has a sustained nationally and internationally recognized track record of integrated scholarship. She leads a strong research program in primary care nursing, with particular emphasis on nursing in general practice, chronic disease, and nursing workforce issues. Neil Hall is a senior social work academic at Western Sydney University and a co-founder and lead researcher with WSU’s Centre for Male Health. His research converges the social determinants of male well-being and suicide prevention. His recent research is exploring men’s lived experience of mental health during COVID19, mental health literacy in the Nepalese community in Australia, and suicide prevention among older people in residential villages. Andrew Harmer is a senior lecturer at the Wolfson Institute of Population Health, Queen Mary University of London where he directs the Institute’s online MSc Global Public Health. He has published widely on global health issues but specializes in the health impacts of climate change. In 2019, Andrew was arrested under the 1986 Public Order Act while peacefully occupying Westminster bridge during 2 weeks of protests organized by Extinction Rebellion.
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Neil Harris is the director of Higher Degree Research for the Health Group and professor in the School of Medicine and Dentistry at Griffith University. Neil has extensive experience in the planning, implementation, and evaluation of populationbased intervention research to motivate healthy lifestyle choices including dietary behaviors. Maham Hasan is an expert in research methodology and data analysis, and is a freelance research consultant and editor. Her research consultancy brand is called Crescent Consultancies, which offers research services to for tertiary institutes, NGOs, and other businesses using new data-driven insights and creative solutions with a pragmatic approach. Alex Hawkey is a research fellow working at the intersection of critical public health and cultural enquiry to explore inequities in sexual and reproductive health experienced by marginalized women. Using participatory and arts-based methods, she brings new perspectives to issues such as fertility, contraception, sexuality, sexual violence, and menstruation. Kim Hayes is a community psychologist and an expert in rapid evidence assessments, qualitative and quantitative research analysis, and evaluations of projects working with vulnerable people. Kim has worked as a research associate for 3 years. Previous to this position, she was a lecturer on the Abuse Studies Bachelor of Arts course and the British Psychological Society accredited Psychology Bachelor of science course. Emma Heard is a qualitative researcher with particular interest in social equity and arts-based research methods. Her research experience has included working with diverse groups, such as young people, people in prison, people with diverse gender identities and sexualities, and people in the Pacific. Her research has focused on sexual violence prevention, and the role intersectionality in strengthening health promotion research and practice. Jeff Hearn is Professor Emeritus, Hanken School of Economics, Finland; Professor of Sociology, University of Huddersfield, UK; and Senior Professor, Human Geography, Örebro University, Sweden. His latest books are Age at Work (2021); Knowledge, Power and Young Sexualities (2022); and Digital Gender-Sexual Violations (2022). Jessica A. Heerde is a National Health and Medical Research Council emerging leadership fellow and a senior research fellow in the Department of Paediatrics, Melbourne Medical School at the University of Melbourne. She leads a program of research focused on the prevention of homelessness before its consequences for health and the social and individual assets that underpin health across the later life course.
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About the Contributors
Daniela Heil is a social, cultural, and medical anthropologist (University of Newcastle, Australia) who has collaborated with Ngyiampaa, Paakantji, and Wiradjuri people in central-Western New South Wales, Australia, since 1997. Daniela’s research focuses on First Nations’ well-being in comparison to health, the personhood and body realm, and biological German parents’ collaborations with surrogacy services in Ukraine. Diana Hernández conducts research at the intersection of energy, equity, housing, and health. A sociologist by training, her work examines the social and environmental determinants of health and has studied the impacts of policy and place-based interventions on the health and well-being of socioeconomically disadvantaged populations. Amy Hill is a trainer and consultant on the ethics and practice of strategic storytelling and participatory media for public health, community development, and human rights. She founded StoryCenter’s Silence Speaks initiative, which has employed oral history, participatory media, and popular education strategies to support people in sharing personal stories that document injustice and promote individual, community, and policy change. Claire Hooker is an associate professor in health and medical humanities at Sydney Health Ethics and president of the Arts Health Network NSW/ACT. Much of her research has explored the humanistic elements of doctors’ experiences. She has recently used verbatim theater and drama-based to understand and improve healthcare workplace training, culture, and communication. Dell Horey is an associate professor at the University of New England and has an adjunct position at La Trobe University. She has qualifications in science and epidemiology and a strong history in consumer participation. With more than 60 peer-reviewed publications, her main research focus is difficult health decisions in vulnerable population groups. Syeda Zakia Hossain is an associate professor in the School of Health Sciences at the University of Sydney. She attained her Master’s from the Australian National University and PhD from the University of Queensland. She has published extensively on migrants and refugees in international peer-reviewed journals and book chapters. She uses mixed methods. Tabitha Hrynick is a researcher at the Institute of Development Studies and the Social Science in Humanitarian Action Platform. She has a background in sociology and development studies and is interested in the linkages between health and social systems.
About the Contributors
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Lena Hübner is an associate professor of the Faculty of Social Sciences at Stockholm University. She has a PhD in social work and her subject areas are addictions and societal and individual attempts to handle them, evidence-based social work and more general issues concerning social work. During 12 years, she held the positions as deputy head and head of the Department of Social Work at Stockholm University. Muhamad Alif Bin Ibrahim is a PhD candidate in Society and Culture at James Cook University, Singapore Campus. His doctoral research focuses on understanding the resilience of same-sex couples against socio-political stressors in Singapore. His research interests include qualitative methods, coping and resilience, romantic relationships, gender and sexuality, and critical approaches to health and illness. Paul Illingworth is the head of the Leicester School of Allied Health Sciences at De Montfort University, Leicester, England. Paul originally trained as a nurse (adult and mental health) in clinical and management roles. He has over 30 years in education, including HM Prison Service College (England and Wales). His primary interests are mental health, global mental health, de-stigmatization, and lived experience. Ghouwa Ismail is a registered research psychologist at the Institute for Social and Health Sciences at the University of South Africa. Her research interests include the development of measuring instruments, cross-cultural evaluation of assessment tools, and child well-being. She also has a keen interest in community engaged research and participatory research methodologies. Peter Bai James is a postdoctoral research fellow at the National Centre for Naturopathic Medicine (NCNM) Faculty of Health, Southern Cross University, Australia, and adjunct lecturer at the College Medicine and Allied Health Sciences, University of Sierra Leone. His main research focus is on health and health services research among survivors of emerging and re-emerging infectious diseases. Aaron Jenkins is Australia’s first senior research fellow in Planetary Health and is recognized for pioneering integrative approaches linking environmental change to human health outcomes. With a world-class network of collaborators supporting his research, his visibility and influence provide timely solutions for watershed management for both human and ecosystem health in Australia and neighboring regions of the Indo-Pacific. Ying Jin is a lecturer in the School of Health Sciences at Massey University, New Zealand. She researches micronutrients, thyroid hormones, postnatal depression, and dietary supplements among pregnant and breastfeeding women. Her research interests include perinatal mental health, and the intersection between nutritional status, maternal mental health, and infant neurodevelopment.
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Marcelin Joseph has a Bachelor of Science in Public Health and is pursuing a Master in Public Health at Southern Connecticut State University. Marcelin is very passionate and interested in public health, especially regarding racial justice and health equity issues. He works as an HIV program coordinator and is interested in pursuing his Doctorate of Public Health. Natalie Jovanovski is a health sociologist and ARC senior research fellow in the Melbourne School of Population and Global Health at the University of Melbourne. Her research focuses on the harms of diet culture, and the different groups that challenge its cultural norms. Ranya Kaddour is an academic at Western Sydney University, with a background in criminology and psychology. She teaches in the School of Social Science at Western Sydney University, with a focus on social work and ethics. Recently, she completed a Master of Research in Psychology with a focus on criminal risk assessment, with wider research focusing on human rights and criminal justice. Dev Kapil conducts artificial intelligence (AI) research using computer vision to develop human mobility applications to improve the lives of for older adults, people with Parkinson’s disease, and others with a variety physiotherapy needs, based at the National University of Singapore (NUS-ISS). Shane Kavanagh is a lecturer in the School of Health and Social Development at Deakin University. His research focuses on social and health inequalities as well as supporting communities to undertake more effective processes of health enablement. He has a particular interest in how gender and social inequalities shape men’s health and well-being. Adrian B. Kelly is an associate professor of clinical psychology at the Queensland University of Technology, Australia. He has worked extensively with others to evaluate community-level prevention programs for adolescent disengagement and high-risk behaviors. His work has been recognized as making a national contribution to prevention research. Shose Kessi is the dean of the Faculty of Humanities at the University of Cape Town; Associate Professor in the Department of Psychology; and Co-director of the Hub for Decolonial Feminist Psychologies in Africa. She has published on the psychology of racism in higher education and decolonial and pan-African approaches to psychology.
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Farzana Y. Khan is currently a project coordinator at Columbia University’s Mailman School of Public Health with Diana Hernandez’s Energy, Equity, Housing and Health (E2H2) Program. She provides day-to-day assistance with a currently underway clinical trial to identify strategies to increase compliance to a smoke-free mandate in all US public housing. She is interested in mixed methods public health research. Bregje de Kok is an assistant professor in anthropology at the University of Amsterdam and works on the anthropology of reproduction, care, and communication. In her research in Malawi, Ghana, and the Netherlands, she blends ethnography with discourse and conversation analysis to illuminate situated birth care practices, notions of “good” and “respectful” care, and practices of accountability. Leah V. Lamoreaux is a graduate student in the Sociology Department at California State University, Northridge. Her research has examined people’s interaction with misinformation online particularly, user motivations to correct misinformation on social media, and how users are experiencing a phenomenon conceptualized as misinformation fatigue. Rashon Lane is a research fellow at Harvard Medical School’s Division of Sleep Medicine and a senior health equity scientist at Sutter Health’s Institute for Advancing Health Equity. She has worked in multiple CDC global offices, including Sierra Leone, during the 2013–2016 West Africa Outbreak. Her dissertation examined survivor health through media discourse, community trauma, and health social movements in the aftermath of the West Africa Ebola epidemic. Tegan Larin is a researcher located within Monash University’s XYX Lab: Gender + Place. Drawing on urban planning, policy, design, and feminist theory, her research explores links between gender and the built environment. Mi-Joung Lee is a full-time lecturer in the Discipline of Physiotherapy at the University of Sydney. She is a registered physiotherapist in South Korea and completed a Masters in Neurological physiotherapy and a PhD at the University of Sydney. Her research interests include the impact of culture on health and exercise intervention in different clinical populations. Patricia Chiao-Tzu Lee is an associate professor in the School of Medicine and Dentistry at Griffith University. With over 15 years of teaching and working experience in epidemiology and biostatistics, Patricia has been involved in many international and Australian research and consultancy projects. Her research interests include epidemiology, health risk modelling and analysis, health, and occupational health.
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Xiaoli Li is doctoral candidate in applied gerontology at the University of North Texas. Her research aims to improve long-term care efficiency, quality, and cultural competence by applying measurement tools, survey instruments, and mixed methods. Jane Mingjie Lim is a research fellow at the NUS Centre for Biomedical Ethics and is currently a member of the Epidemic Ethics (EE) project in collaboration with the World Health Organization. Her academic background is in infectious diseases epidemiology, with a focus on the behavioral aspects of cross-sector antibiotic resistance. Supuni Liyanagunawardena is a lecturer at the University of Sri Jayewardenepura, Sri Lanka. She recently completed her PhD at Te Herenga Waka – Victoria University of Wellington, New Zealand. Her research interests include therapeutic diversity, healthcare interactions in the Global South, and postcolonial/decolonial theories. Krystal Lockwood is Gumbaynggirr and Dunghutti, an Aboriginal woman gowing up in Armidale, Australia. She is a lecturer in the School of Criminology and Criminal Justice at Griffith University. Her research focuses on the way evidence is used in the criminal justice system, particularly in the way evidence can influence steps to achieving social justice. Her work addresses the over-representation of Indigenous peoples throughout criminal justice systems. Janet Long is a senior research fellow at the Australian Institute of Health Innovation, Macquarie University, and co-lead of the Complex Systems Research Stream. She leads the Medical Research Futures Fund Project Keeping Australians out of Hospital. She has a clinical background as a nurse and an ecologist. Her passion is social network research and social processes in learning, advocating for care, and translating evidence into practice. Nguyen Hoang Long is currently the director of the Bachelor of Nursing Program and the Medical Simulation Center at VinUnivesity, Vietnam. His area of interest includes end-of-life care, nursing education, and leadership and management. His study of death is inspired by his Thai advisor, Dr. Sureeporn Thanasilp, who wants to integrate spiritual practices into nursing care for cancer patients. Megan Lourdesamy was a research assistant at the Saw Swee Hock School of Public Health, National University of Singapore and National University Health System. She received her Bachelors in Psychology (Honours with Distinction) from the National University of Singapore. Her research focus is the influence of social systems on individual human experiences and identity.
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Elias Mambo Machina is an academic tutor in culture, diversity, and health at Western Sydney University, and a psychosocial support worker for Kairos Care Pty Ltd of Sydney, Australia. His research interest is in understanding and effectively engaging with culturally and socially diverse populations in healthcare contexts. Lara Maestripieri is a distinguished researcher Ramon y Cajal in the Department of Political Science at the Universitat Autònoma de Barcelona. Her main interests concern social change in post-industrial society and particularly marginalized groups in labor markets, social innovation, and emerging professions. Lactricia Maja is a master’s research intern for the DSI-HSRC internship program and works at Aurum institute as the hosting institution for HSRC. Lactricia holds a master’s degree in social and psychological research obtained at the University of the Witwatersrand. Her research interest includes any topic that deals with HIV and AIDS, key populations, medical male circumcision (MMC), gender-based violence, social injustice, global public health, and the development of e-health tools. Nick Malherbe is a community psychologist interested in violence, visual methods, and discourse. He works with social movements, cultural workers, and young people. He lives in South Africa. Annetta Mallan is the founder and director at Gentle Death Education and Planning (GDEP), Australia. She is an expert in grief and loss, education, sociology, advocacy, and personal stories. She has been a psychotherapist for more than three decades specializing in grief and loss, injury and trauma recovery, and personal growth and development for clients. Karine Manera is a research fellow at the Sydney School of Public Health, the University of Sydney. Her 5research expertise is in the field of person-centered care and outcomes, patient-reported outcomes, qualitative research, consensus methods, and consumer engagement. She has established a core outcome set for research in peritoneal dialysis, which has led to increased recognition of the importance of patient preferences and shared decision-making. Virginia Mapedzahama is a first-generation Black African migrant woman and a critical race Black feminist scholar in the broader field of sociology of difference. She explores this interest in the context of subjective experiences of race, racism and ethnicity, migration, diaspora, Blackness and Black subjectivities, sexuality, hybridity, intersectioanality, and gendered violence. She has published extensively in these areas. Moleen Maramba has lived and worked in both Zimbabwe and the UK. She is currently employed with the NHS England Commercial Directorate and previously has worked with NHS Clinical Governance and the National Institute for Health Research. She is also an active volunteer with the London Cycling Campaign.
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Hayley McKenzie is a lecturer in the School of Health and Social Development at Deakin University. Her research focuses on social policy and exploring the inequities experienced by particular social groups that are reliant on social and institutional policies, including a specific focus on women’s health and well-being. Katherine McKinley ’s research focuses on centering sex and gender differences while promoting health equity for Indigenous peoples. She developed the Indigenist ecological “Framework of Historical Oppression, Resilience, and Transcendence (FHORT),” which identifies and culturally relevant risk and protective factors related to wellness from a relational perspective. Cara Meixner is an associate professor of psychology at James Madison University, where she also directs the Center for Faculty Innovation. A scholar in brain injury advocacy, Cara has published mixed-methods studies and contributed to methodological research on this genre of inquiry. Also, Cara teaches a doctorallevel course on mixed-methods research at JMU. Wendy Mincer is a licensed professional counselor and graduate student in health services research at the University of North Texas. Her research focus is on harm reduction and substance use disorders among Native Americans in rural populations. Victor Minichiello is an internationally recognized public health, health sociologist, and sexual health researcher who has researched and published widely on topics related to sexual health, STIs, sexualities, and health care. He is an adjunct professor in the School of Social Justice at Queensland University of Technology, Brisbane, Australia. Sharon Moonsamy is an associate professor at Wits University and is the head of the School of Human and Community Development. Her professional experience relates to education, health, and higher education. She co-edited several publications, including Speech-language Therapy in the School Context. She is a board member and task-team member of international and local professional organizations. Izzat Morshidi is a PhD candidate at James Cook University, Singapore. His research is focused on the psychological well-being of students in higher education with a specific interest in suicidal ideation and behaviors. He is also a part-time lecturer in psychology at the University of Reading Malaysia. Elias Mpofu is a professor of health services research at the University of North Texas, honorary professor of clinical and rehabilitation sciences at the University of Sydney and visiting professor of community and human development at the University of the Witwatersrand, South Africa. His research focus is on the design, implementation, and evaluation of services and tools aimed to optimize the full community inclusion of people with disability and other vulnerabilities.
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Natascha Mueller-Hirth is a senior lecturer in sociology at Robert Gordon University Aberdeen, Scotland. Her research utilizes qualitative methodologies to examine issues around peace and conflict, violence, gender, and development, primarily focusing on South Africa and Kenya. A particular interest is temporality and the politics of time in relation to conflict, peacebuilding, and transitional justice. Rosediani Muhamad has medical qualifications in family medicine from Universiti Sains Malaysia (USM) and PhD in Public Health from La Trobe University. She is the head of Women’s Wellness Clinic at USM Hospital which manages patients with sexual dysfunction. Her research focuses on women, sexual health, cardiovascular disease, and breast cancer, where she uses a range of methodological approaches, both qualitative and quantitative. Anniah Mupawose is a senior lecturer of speech language pathology at University of the Witwatersrand (Wits). Her primary research thrust is transformative teaching and learning methods at the tertiary level. Her other research interests include cognition, language and literacy development in preschool and school-age children, dyslexia, and stuttering. Olav Muurlink is an associate professor in sustainable innovation at Central Queensland University. He is a social and health psychologist, with an interest in education and health in the developing world, particularly Bangladesh. He is head of country, Bangladesh, of the international NGO Co-operation in Development, through which he has first-hand experience of key issues facing vulnerable populations. Rishita Nandagiri (she/her) is a lecturer in King’s College London. A feminist researcher, she focuses on abortion and reproductive (in)justice in the Global South. Sharanya Napier-Raman is a master of philosophy student at the University of Sydney. Her thesis examines migrant and refugee youth’s sexual and reproductive health and rights, for which she has been awarded a postgraduate research scholarship. Her research interests include child and youth health, global public health, and sexual and reproductive rights. Vuyolwethu Ncube is a research coordinator at the Aurum Institute. Vuyo is a PhD candidate, a passionate researcher, and an academic whose vision is to simplify research and make it accessible and enjoyable to everyone who ventures to conduct a research study. Her research interests are in public health, marginalized groups, and interventions to curb violence against women.
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Ann-Charlotte Nedlund is an associate professor in political science at the Department of Health, Medicine and Caring Sciences, and affiliated to the Centre for Medical Humanities and Bioethics, Linköping University. Her research examines health and social policy issues related to the organizing of the welfare system, governance, citizenship, democracy, and legitimacy, from a critical and interpretive policy perspective. Eva Neely is a lecturer in Health psychology in the School of Health, Te Herenga Waka – Victoria University of Wellington. Her primary research interest lies at the intersection of motherhood, place, health, and equity. In her research, she takes a health promotion approach to motherhood, moving away from individual responsibility toward collective care for each other. Pearlyn Hui Min Neo is a research associate at Saw Swee Hock School of Public Health, the National University of Singapore. She specializes in conducting qualitative research among vulnerable communities. She is currently working on understanding what well-being means to Singaporean youths. An Nguyen is currently doing her PhD at Monash University in Australia. She has been working and researching with people with disabilities in Vietnam for more than 10 years prior to coming to Australia. She is interested in sexual and reproductive health among people with disabilities in Vietnam and has published several papers resulting from her research in the last few years. Hao Thi My Nguyen is a third-year medical student at the College of Health Sciences, VinUniversity in Hanoi, Vietnam, and is the founder of the VinUni Research Club. She is the principal investigator of the current research program: “Human Papillomavirus Vaccination: Knowledge and Acceptance of Vietnamese Youths Living in Hanoi, Vietnam.” Anuli U. Njoku is an associate professor in the Department of Public Health at Southern Connecticut State University. Her research and teaching interests include social determinants of health, health disparities, health promotion and education, cultural competency in higher education, environmental health, rural health, and teaching and learning. Muhammad Naveed Noor is an assistant professor of health policy and system research at the Aga Khan University, Pakistan. He is trained in anthropology and social medicine. He has contributed to various academic and programmatic studies on HIV and other sexually transmitted infections, health system dynamics, and conflicts of interest arising from pharmaceutical incentivization in primary care settings.
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Kayi Ntinda is a doctoral student in rehabilitation counseling at the University of Texas Rio Grande Valley in the school of School of Rehabilitation Services and Counseling. Her research focuses are in applying the World Health Organization’s International Classification of Function, Health, and Disability Model in the inclusion of older populations. Katarina Giritli Nygren is a professor in sociology at Mid Sweden University. Her research includes intersectional studies of power, governance, and processes of peripheralization within the Swedish welfare state. Her most recent publication is the co-authored article “The Veil as an Object of Right-Wing Populist Politics: A Comparative Perspective of Turkey, Sweden, and France’ published in Identities (2022). Anna Olofsson is a professor in sociology at Mid Sweden University. She has studied risk for more than 20 years, initially risk perception and risk communication, and later on from a critical, gender, and intersectional perceptive. Her most recent work includes both empirical studies, for example on Covid-19 in the Swedish public debate, and theoretical work such as the framework for intersectional risk theory. Suan Ee Ong is Chief Operating Officer and Senior Health Systems Researcher at Research for Impact Singapore. She is also a fellow at the Saw Swee Hock School of Public Health and the Galen Centre for Health and Social Policy, Kuala Lumpur, Malaysia. Suan’s educational background is in public health and political science. Tricia Ong is a lecturer in career education at Deakin University, Australia. She had a PhD in public health. Her research qualitatively explored the reproductive health knowledge of young women who have been trafficked into the sex industry in Nepal. She has a strong interest in women’s reproductive health and rights in Nepal, and globally. Yvonne Parry has worked for decades researching and improving health access for vulnerable children and their families. She is a mixed methods researcher and pediatric RN, specializing in practice change research projects. Her international work focuses on the housing conditions of children living in temporary accommodation with their families. Her work informs policy and government service provision. Chloe Parton is a lecturer in health psychology in the School of Health, Te Herenga Waka – Victoria University of Wellington. She has expertise in gender, embodiment, and subjectivity in the context of health and illness. She is currently working on a program of research concerning motherhood in the context of disability and chronic health conditions.
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Viraj Patel is an associate professor of medicine in the Division of General Internal Medicine, Albert Einstein College of Medicine. His research centers around innovative community engaged approaches to HIV prevention with sexual minority men and gender minority communities in the USA, India, and Rwanda. He also is focused on implementation and scale-up of pre-exposure prophylaxis (PrEP) for preventing HIV in clinical and community settings. Ann Pederson is the director of Population and Global Health at BC Women’s Hospital + Health Centre in Vancouver, Canada, and adjunct professor at the University of British Columbia and Simon Fraser University. Passionate about gender and health promotion, she is currently working on gaps in policy and care related to gender-based violence and reproductive loss. Christopher Pell is currently a research fellow at the Amsterdam Institute for Global Health and Development. His PhD was in medical anthropology, and over the last 15 years, he has undertaken applied qualitative research on priority global health issues, including malaria and tuberculosis, mainly in sub-Saharan Africa and South East Asia. Arianna Pelati is a psychologist since August 2022. She earned her Bachelor’s degree in “Psychology of social process” at the Sapienza University in Rome in 2018 and her Master’s degree in “Psychology of community, promotion of well-being and social change” at the University of Padua in 2020. Her major interest has always been sexuality psychology and gender studies. Ho Lai Peng is a senior principal medical social worker at the National Centre for Infectious Diseases and Tan Tock Seng Hospital, Singapore. She works closely with people living with HIV, even after completing her doctorate in social work at the National University of Singapore in 2019. Her research interests include social research in HIV, infectious diseases, and chronic illnesses. Christopher Pepping is a clinical psychologist and senior lecturer in the School of Psychology and Public Health, La Trobe University, Melbourne, Australia. His research focuses on LGBTQIA+ mental health and close relationships. Chris Peterson is a health sociologist who has worked for several years in the area of chronic illness, together with the sociology of work and work health. He is based at La Trobe University but has conducted research over a period with the Epilepsy Foundation on the Australian Epilepsy Longitudinal Study. Bríd Phillips is a research fellow on the Good Arts, Good Mental Health project at UWA. She has an extensive clinical background in emergency nursing. Her research is focused on arts and health, Shakespearean studies with a special interest in arts and health, the history of emotions, and health and medical humanities.
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Jason A. Picard is the founding assistant professor of Vietnamese history and culture. Prior to arriving at VinUniversity, Jason served as lecturer of Modern Southeast Asian History at Loyola University Chicago’s Vietnam Center, teaching a variety of courses on Vietnam and Cambodia. He has been a fellow at both Vietnam’s National Institute of Literature and Institute of History. Heath Pillen is a lecturer in Public Health at the University of the Sunshine Coast in Queensland, Australia. With interdisciplinary interests in health sociology and educational research, his work is concerned with health inequalities, health-related stigma, patient social movements, and public involvement in healthcare. Rashmi Pithavadian is a sessional academic and PhD student at Western Sydney University. Her research and award nominated teaching utilizes a multidisciplinary approach focused on analyzing how various types of marginalization impacts individuals’ health, well-being, and rights. She specializes in researching people’s minority experiences of sexual and reproductive health. Zenaida Simpson Pomare is a doctoral student in aging and health sciences in the Department of Rehabilitation and Health Services Research at the University of North Texas. Her areas of research interests include the relationship between education aging and dementia and applying the World Health Organizations International Classification of Function, Health, and Disability in successful aging studies. Sujith Kumar Prankumar is a senior research associate at the Kirby Institute for Infection and Immunity, UNSW Sydney, Australia. He is a sociologist focusing on intersections of sexuality, ethnicity, health, inclusion, and justice, with an emphasis on using qualitative and decolonizing research methods. In his PhD, Sujith explored sexual citizenship and belonging among sexuality and gender-diverse young people through a new materialist framework. Nguyen Koi Quan is a medical doctor who is passionate about healthcare and research methodology with a hope to make an improvement in human health. He completed his medical degree at Hue College of Medicine and Pharmacy, Vietnam. Quan has a keen interest in pursuing research in health sciences and research methodology, with a focus in communicable diseases. Jake Rance is a research fellow with the Centre for Social Research in Health, UNSW Sydney. Jake has a background in social anthropology and public health and has worked for over two decades in the illicit drugs field, as both a clinician and social researcher. Dario Raspanti is an assistant professor at the Department of Social and Political Sciences at the University of Florence. His research interests include the study of service delivery from a street-level perspective, active labor market policy, and sociology of the professions.
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Kopano Ratele is a professor of psychology at the University of Stellenbosch and head of the Stellenbosch Centre for Critical and Creative Thought. Zoe Sanipreeya Rice is an independent scholar currently working in London, UK. She graduated from Monash University and the University of Melbourne, Australia. She has completed a GradDip in Psychology and is an existential therapy PhD candidate. Zoe has coauthored a number of book chapters on social inclusion, social determinants of health, and research methods in the health and social sciences. Santiago Ripoll is a research fellow at the Institute of Development Studies. Santiago is a social anthropologist specializing in ethnographic and participatory approaches to health and food system analysis, with an emphasis on ethics. He uses an anthropological lens within trans- and interdisciplinary research in humanitarian health emergencies and policy debates around food. Scott Rosas is currently the director of Research and Evaluation at Concept Systems, Inc. He has published extensively on the theoretical and applied uses of group concept mapping. Valeria Saladino is a clinical psychologist, specializing in criminology. She had a PhD in Developmental Psychology and a post doc in Clinical Psychology at the University of Cassino and Southern Lazio. She works at university as a professor and in adult Italian Correctional Facilities as a psychologist. Natalie Sampson is an associate professor of public health at the University of Michigan-Dearborn. Through her action-oriented research, Natalie aims to remove structural inequities in environmental decision-making, build capacity for community and youth-led research, and increase the use of plain language in the field of environmental health. She teaches courses on environmental health and community organizing. Megan Schmidt-Sane is a medical anthropologist with interdisciplinary training in public health. She is a research fellow at the Institute of Development Studies, and her research interests include epidemic preparedness and response, political economy of health, and urban health. John Scott is a professor in the School of Justice, Queensland University of Technology Australia, and a member of the Australian Research Council College of Experts. He has written extensively about male sex work. He is also a member of the ARC College of Experts, edits the Routledge Series Crime and Justice Studies in Asia and the Global South, co-edits The Journal for Crime, Justice and Social Democracy, and is vice president of the Asian Criminological Society.
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Bernadette Sebar is a senior lecturer in the School of Medicine and Dentistry at Griffith University. She has been teaching health promotion at undergraduate and postgraduate levels for more than 10 years. Her research interests focused on the social determinants of health; in particular, on how the constructions of gender affect men’s and women’s ability to achieve optimal health. Mohamed Seedat is the head of the Institute for Social and Health Sciences at the University of South Africa. He writes about violence, the psychologies underlying South Africa’s democratic and development imaginations, and engaged approaches to research and development. Maximus Monaheng Sefotho is an associate professor in the Department of Educational Psychology at the University of Johannesburg. His research focuses on career transitioning and disability, neurodiversity, and the philosophy of Ubuntu in research. Maureen Seguin is an assistant professor in the Department of Public Health, Environments, and Society at the London School of Hygiene and Tropical Medicine (LSHTM). She is primarily interested in the empirical application of strong structuration theory to qualitative public health research. Throughout her research career, she has focused on the well-being of marginalized populations such as those forcibly displaced by war. Marguerite C. Sendall is an associate professor at the Department of Public Health, College of Health Sciences, Qatar University, Doha, Qatar. Marguerite has more than 20 years of experience in health promotion encompassing health promotion practice, teaching health promotion theory and practice, supervising health promotion research students, and conducting settings-based research. Kate Senior is a medical anthropologist. She has conducted extensive ethnographic field work to explore the meanings people give to health and illness in remote Indigenous communities and their interactions with health services. She is also interested in methodological innovations, particularly arts-based methods. Zarrin Seema Siddiqui is the inaugural head of the Medical Doctor Program at VinUniversity, Vietnam. Professionally, she is a psychiatrist with a PhD in Medical Education. She has received numerous awards/nominations for excellence in teaching and supervision. Her research interests are mental health and well-being, e-portfolios, assessment and feedback, and medical humanities. Miranda Simes is a PhD student in the Sociology Department at Northwestern University in Chicago. Her past work focused on energy insecurity, justice, housing, and health at Columbia University. Her current interests include environmental sociology, the sociology of borders, and a continued interest in housing.
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Nannie Sköld is an independent scholar based in Amsterdam, the Netherlands. Her work focuses on statelessness, citizenship, migration and inclusion. She works as Communications Associate at UNHCR’s Representation for the Nordic and Baltic Countries. Dan Spitzner is an associate professor of statistics at the University of Virginia. His interests are in the development of statistical theory and methodology especially for use in the social sciences. His recent work has focused on source-matching problems in forensic science. Shahnaaz Suffla is an associate professor at the Institute for Social and Health Sciences, University of South Africa and a senior researcher affiliated to the Medical Research Council-University of South Africa Masculinity and Health Research Unit. Her research interests draw from the intersections of decolonial, African, community, and peace psychologies, and are located within liberatory philosophies and epistemologies. James E. Sutton is an associate professor of sociology and chair of the Institutional Review Board (IRB) at Hobart and William Smith Colleges in Geneva, New York. He earned his PhD in Sociology from the Ohio State University, and his areas of interest include crimes of the powerful, corrections, and victimology. His publications have appeared in the Journal of Criminal Justice, Punishment & Society, Violence Against Women, and Deviant Behavior, among others. Ann Taket is an honorary professor at Deakin University, Australia. She retired at the end of 2019, after over 40 years in public health related research initially in the UK, then at WHO, and finally in Australia. Ann has published extensively in social inclusion/exclusion in health and social care. In retirement, she continues to write on a variety of topics and is enjoying life as a public health activist in environmental and human rights issues. Naiema Taliep is a research psychologist at the Institute for Social and Health Sciences at the University of South Africa, with expertise and extensive experience in community-based participatory action research, community engagement, violence prevention, and program valuation. She has conducted research in the field of violence, family functioning, safety and peace, and health-related quality of life. Rayner Kay Jin Tan is a postdoctoral fellow at the University of North Carolina Project-China. His research interests revolve broadly around the social determinants of health, community engagement, the health of vulnerable populations, sexual health, and mental health.
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Andrew Taylor-Robinson is a professor of microbiology and immunology at VinUniversity and an international scholar of the Center for Global Health, University of Pennsylvania. He has a research interest in tropical infectious diseases immunology, epidemiology, prevention, and control, with a primary focus on malaria, dengue, and other mosquito-borne diseases of major public health impact. Armando Teixeira-Pinto is a professor of biostatistics at University of Sydney. He completed his PhD in 2007 in biostatistics, from Harvard University. He has more than 200 publications in statistical methodology and clinical research, in particular in the areas of chronic kidney disease, critical care medicine, mental health, and cardiovascular research. Jacob Thomas is a PhD student in LGBTIQA+ health with a focus on youth and mental health based at Monash University. Jacob has over a decade of experience advocating with LGBTIQA+ youth in Australia and internationally, and holds multiple committee and board positions promoting positive LGBTIQA+ youth health outcomes. Jacob is an activist-academic and utilizes drag in teaching to queer classrooms and curriculum in undergraduate and postgraduate studies. Josh Ting is currently a medical student at the University of Melbourne School of Medicine. His research interest focuses on healthcare service process improvement and healthcare technological innovation. Josh has demonstrated his potential in research during his previous Bachelor of Medical Science Program. M.-H. Catherine Toh is a PhD candidate in Health at James Cook University, Singapore. Her research focus is on counselors’ development, hindering selfawareness, supervisory working alliance, and counselors’ self-efficacy. She is a practitioner in school and adopts strength-based and humanistic approaches in her work with students to promote social and emotional well-being. Allison Tong is a principal research fellow at the Sydney School of Public Health, the University of Sydney. She has experience in patient-centered outcomes research in chronic disease, particularly chronic kidney disease. Allison has an interest in patient involvement in research, including in the context of research priority setting, in the development of core outcomes for research, and in the co-production of clinical trials. John Toumbourou is a recognized international leader in the field of prevention science. His expertise merges knowledge from developmental psychology, behavior change theory, program evaluation, and system change sciences. John is the chair in Health Psychology and the co-leader of Translation Sciences in the Centre for Social and Early Emotional Development (SEED) at Deakin University.
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About the Contributors
Carla Treloar is the director of the Centre for Social Research in Health and the Social Policy Research Centre, UNSW, Sydney. Carla is primarily a qualitative researcher grounded in the disciplines of health and social psychology, public health, and health policy. Idorenyin Udoh is a doctoral student in applied aging and rehabilitation sciences in the Department of Health Sciences at the University of North Texas. She completed her master’s degree in Health Systems Management at Texas Woman’s University, TX, USA. Her areas of research interests include multidimensional factors affecting persons with dementia and their caregivers and the relationship between women with disabilities and birth outcomes. Laura Vanderbloemen is an honorary research fellow at Imperial College London and Global Health Scholar at the University of Pennsylvania Perelman School of Public Health. She currently works, lectures, and supervises health research with diverse research groups from around the world. Fathima Wakeel is an associate professor at Lehigh University’s College of Health. She has over 20 years of academic and research training in maternal and child health as well as 8 years of experience teaching and mentoring undergraduate and graduate students, curriculum and program development, and interdisciplinary community coalition development. Andrea Waling is a senior ARC DECRA research fellow works across several LGBTQA+ health and well-being projects at the Australian Research Centre in Sex, Health, and Society, La Trobe University. Her research interests include LGBTQA+ health and well-being, men, bodies, and masculinity, technology, sexual practices and intimacy, and young people and sexual literacies. Christine Walker is a qualitative health researcher with a particular interest in the lived experiences of people with serious chronic illnesses. She is a researcher with the Australian Epilepsy Longitudinal Study, a community-based survey on the social impact of epilepsy. Paul Ward is a professor of public health at Torrens University, Australia. He is an internationally distinguished and highly influential medical sociologist, who focuses particularly on the sociology of risk and trust. He applies sociological theory to understand and explain key public health problems and then translational methods to develop applied policy/practice solutions. Felicity Ware (Ngāpuhi) is an Indigenous mother from the North of Aotearoa, New Zealand, raising three children in the Indigenous language and culture. As a senior lecturer in Māori health and well-being at Massey University, she provides innovative teaching, research, and supervision in kaupapa Māori and whānau-centered solutions to elevate the health and well-being of Māori communities.
About the Contributors
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Kathryn Wenham is a lecturer in the School of Health and Behavioural Sciences at the University of the Sunshine Coast. Her research interests focus on cross-cultural health promotion, gender, intimate partner violence, trauma, and sexual health. Her strong interests in issues of social justice, equity, and human rights underpin her research in public health. Billy Wheeler is an assistant professor of philosophy, science and society at VinUniversity, Vietnam. He completed his PhD in the history of philosophy and science at the University of Cambridge in 2013 and has previously held positions at Sun Yat-Sen University and University College London. Andrea Whittaker is a professor of anthropology at the School of Social Sciences, Monash University, Melbourne, Australia. She specializes in interdisciplinary research across anthropology and public health with major research in reproductive health, biotechnologies, and antimicrobial resistance. Her latest book is International Surrogacy as Disruptive Industry in Southeast Asia (2019). Britta Wigginton is a qualitative researcher who has experience with applying feminist methodologies, mostly in the context of privileging everyday understandings of health and illness. Britta advocates for reflexive ways of knowing, being, and doing that enable attention to power, voice, and representation, ultimately to shift the status quo of research(ers) and knowledge generation. Annie Wilkinson is an anthropologist and applied health systems researcher with expertise in zoonotic disease, epidemic preparedness, and control and urban health. She is a research fellow at the Institute of Development Studies, University of Sussex, UK. Eileen Willis is a professor emeritus at Flinders University, Australia. She has research interests in Indigenous public health, nursing missed care, and sociology of health and illness. She has published extensively in these fields. She is a research training lead at Central Queensland University. Alex Workman is a criminologist and PhD candidate at Western Sydney University, Australia. His research investigates the experiences of marginalized communities through the lens of intimate partner violence. Using human rights as a guiding hand to his research, Alex utilizes qualitative methodologies to capture the lived experience of survivors to advocate for greater social awareness and more meaningful social inclusion of all people. Cathy (Chao-Yuan) Wu ’s PhD training majored in Health Needs Assessment and Women’s Health Promotion using mixed methods to address menopausal women’s health in community. She joined co-supervising the international medical students’ research projects and executed data management and data analysis in the School of Medicine and Dentistry and the Business School of Griffith University.
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About the Contributors
Cheng Yin is a doctoral candidate in the Department of Rehabilitation and Health Services at the University of North Texas. His current research focuses on Covid-19 prevention and management in nursing homes, minorities, and cancer, and community-based behavioral health programs, including falls risk management, type-two diabetes self-management as well as chronic disease self-management. Assata Zerai is the vice president for Equity and Inclusion and professor of sociology at the University of New Mexico. Her latest academic manuscript is African Women, ICT and Neoliberal Politics: The Challenge of Gendered Digital Divides to People-Centered Governance (Routledge 2019). She serves as visiting professor in the School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa. Rongfang Zhan is a doctoral student in the Department of Rehabilitation and Health Services Research at the University of North Texas. Rongfang completed his master’s degree in data analytics at the University of North Texas, USA. His research interests include relationship resourcing of older adults by using digital tools and applying the World Health Organizations International Classification of Function, Health, and Disability in successful aging studies. Anna Ziersch is an associate professor in the College of Medicine and Public Health, Flinders University. Her research focuses on the social determinants of health and health equity, with an emphasis on migrant and refugee health. This research includes an examination of employment, housing and neighborhood, stigma and discrimination, immigration precarity, social inclusion, regional resettlement, domestic violence, HIV, disability, and access to health care.
Contributors
Thoraya Abd El Fattah Community and Occupational Medicine Department, Faculty of Medicine for Girls, Al-Azhar University, Cairo, Egypt Míriam Acebillo-Baqué INGENIO (CSIC-UPV), Ciutat Politècnica de la Innovació (CPI), Universitat Politècnica de València, València, Spain Feyisola Opeyemi Adeleye School of Health & Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia Rifat Afrin Rehabilitation and Health Services, University of North Texas, Denton, TX, USA Michaels Aibangbee School of Health Sciences, Western Sydney University, Campbelltown, NSW, Australia John Alagood College of Health and Public Service (Rehabilitation and Health Services), University of North Texas, Union, TX, USA Nguyen Le My Anh MD Education Unit, College of Health Sciences, VinUniversity, Hanoi, Vietnam Matthew Ankers College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, Australia Christine Ashley School of Nursing, University of Wollongong, Wollongong, NSW, Australia Vincenzo Auriemma Department of Political and Social Studies, Sociology, University of Salerno, Fisciano, Italy Jennifer A. Bailey Social Development Research Group, School of Social Work, University of Washington, Seattle, WA, USA Umesh Bawa Department of Psychology, University of the Western Cape, Cape Town, South Africa Andrea Bellini Department of Social and Economic Sciences, Sapienza University of Rome, Rome, Italy li
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Contributors
Maria Berghs Leicester School of Allied Health Sciences, De Montfort University, Leicester, UK Muhamad Alif Bin Ibrahim School of Social and Health Sciences, James Cook University, Singapore, Singapore Brett Bowman Psychology Department, School of Human and Community Development, Faculty of Humanities, University of the Witwatersrand, Johannesburg, South Africa Kelly Bracewell School of Social Work, Care and Community, University of Central Lancashire, Lancashire, UK Nechama Brodie Wits Centre for Journalism, School of Language, Literature and Media, Faculty of Humanities, University of the Witwatersrand, Johannesburg, South Africa Jelmer Brüggemann Department of Thematic Studies – Technology and Social Change, Linköping University, Linköping, Sweden Kendal Brune Meharry Medical College (Family and Community Medicine), Nashville, TN, USA Domenico Cafaro Milton Erickson Association, Crotone, Italy Sandra Carr Health Professions Education, University of Western Australia, Perth, WA, Australia Michael J. Carter Sociology Department, California State University, Northridge, CA, USA Simon A. Carter Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia Trimita Chakma Feminist Participatory Action Research Academy, Seoul, South Korea Arthur Chaminuka Rehabilitation and Health Services, University of North Texas, Denton, TX, USA Khatidja Chantler Manchester Metropolitan University, Manchester, UK Richard Chenhall Melbourne School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia Kate Churruca Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia Ernestina Coast Department of International Development, London School of Economics and Political Science, London, UK Josephine Cornell Department of Psychology, School of Social Sciences, Birmingham City University, Birmingham, UK
Contributors
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Carole Cox Graduate School of Social Service, Fordham University, New York, NY, USA Elaine Craig Manchester Metropolitan University, Manchester, UK Jonathan C. Craig College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia Hai-Anh H. Dang Development Data Group, World Bank, Washington, DC, USA International School, Vietnam National University, Hanoi, Hanoi, Vietnam O’Neill School of Public and Environmental Affairs, Indiana University, Bloomington, IN, USA IZA, Bonn, Germany Sarah Day Division of Social and Behavioural Sciences, School of Public Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa Bregje Christina de Kok Anthropology, University of Amsterdam, Amsterdam, The Netherlands Kevin Dew Te Herenga Waka – Victoria University of Wellington, Wellington, New Zealand Trang Do School of Social Sciences, Faculty of Arts, Monash University, Melbourne, VIC, Australia Minh N. N. Do University of Economics and Business, Vietnam National University—Hanoi, Hanoi, Vietnam Aunty Kerrie E. Doyle School of Medicine (Indigenous Health), University of Western Sydney, Campbelltown, NSW, Australia Clemence Due School of Psychology, University of Adelaide, Adelaide, SA, Australia Tinashe Dune Translational Health Research Institute, Western Sydney University, Campbelltown, NSW, Australia Diana Dushkova Department Urban and Environmental Sociology, Helmholtz Centre for Environmental Research – UFZ, Leipzig, Germany Joy Duxbury Manchester Metropolitan University, Manchester, UK Jody O. Early School of Nursing and Health Studies, University of Washington, Bothell, WA, USA Bassey Ebenso University of Leeds, Leeds, UK Louise A. Ellis Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia
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Contributors
Alice Fiddian-Green School of Nursing and Health Professions, Health Professions Department, University of San Francisco, San Francisco, CA, USA Katarina Giritli Nygren Forum for gender studies at Mid Sweden University, Sundsvall, Sweden Naomi Joy Godden Centre for People, Place and Planet, Edith Cowan University, Bunbury, WA, Australia Patricia M. Griffin Holy Family University, Philadelphia, PA, USA Christian Grov Department of Community Health and Social Sciences, CUNY Graduate School of Public Health and Health Policy, New York, NY, USA Aline Gubrium School of Public Health and Health Sciences, Department of Health Promotion and Policy, University of Massachusetts Amherst, Amherst, MA, USA Lisa Guntram Department of Thematic Studies – Technology and Social Change, Linköping University, Linköping, Sweden Dagmar Haase Department of Geography, Humboldt University of Berlin, Berlin, Germany Department of Computational Landscape Ecology, Helmholtz Centre for Environmental Research – UFZ, Leipzig, Germany Alina Haines-Delmont Manchester Metropolitan University, Manchester, UK Elizabeth Halcomb School of Nursing, University of Wollongong, Wollongong, NSW, Australia Neil Hall School of Social Sciences, Western Sydney University, Parramatta, NSW, Australia Andrew Harmer Queen Mary University of London, London, UK Neil Harris Griffith University, Southport, Australia Maham Hasan Crescent Consultancies; Centre for HIV-AIDS Prevention Studies, Johannesburg, South Africa Alexandra Hawkey Translational Health Research Institute, Western Sydney University, Sydney, NSW, Australia Emma Heard Griffith University, Brisbane, QLD, Australia Jeff Hearn FLO, Hanken School of Economics, Helsinki, Finland University of Huddersfield, Huddersfield, UK Örebro University, Örebro, Sweden
Contributors
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Jessica A. Heerde Department of Paediatrics, Melbourne Medical School, & Department of Social Work, Melbourne School of Health Sciences, The University of Melbourne, Parkville, VIC, Australia Centre for Adolescent Health, Royal Children’s Hospital & Murdoch Children’s Research Institute, Parkville, VIC, Australia Daniela Heil School of Humanities, Creative Industries and Social Sciences, University of Newcastle, Newcastle, NSW, Australia Diana Hernández Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, NY, USA Kim Heyes Manchester Metropolitan University, Manchester, UK Amy Hill StoryCenter, Berkeley, CA, USA Lai Peng Ho Department of Care & Counselling, Tan Tock Seng Hospital, Singapore, Singapore Department of Care & Counselling, National Centre for Infectious Diseases, Singapore, Singapore Claire Hooker Sydney Health Ethics, University of Sydney, Sydney, NSW, Australia Dell Horey Faculty Science, Business, Agriculture and Law, University of New England, Armidale, NSW, Australia Department of Public Health, La Trobe University, Bundoora, VIC, Australia Syeda Zakia Hossain Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia Tabitha Hrynick Institute of Development Studies, University of Sussex, Brighton, UK Lena Hübner Department of Social Work, Stockholm University, Stockholm, Sweden Paul Illingworth Faculty of Health & Life Sciences, De Montfort University, Leicester, UK Ghouwa Ismail Institute for Social and Health Sciences, University of South Africa, Lenasia, Johannesburg, South Africa South African Medical Research Council-University of South Africa Masculinity and Health Research Unit, Tygerberg, Cape Town, South Africa Peter Bai James Faculty of Health Southern, Cross University, Lismore, NSW, Australia Faculty of Pharmaceutical Sciences, College of Medicine and Allied Health Sciences, University of Sierra Leone, Freetown, Sierra Leone
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Contributors
Abdulai Jawo Bah Faculty of Pharmaceutical Sciences, College of Medicine and Allied Health Sciences, University of Sierra Leone, Freetown, Sierra Leone Institute for Global Health and Development, Queen Margaret University Edinburg, Musselburgh, Scotland, UK Aaron Jenkins Centre for People, Place and Planet, Edith Cowan University and University of Sydney, Joondalup, WA, Australia Ying Jin School of Health Sciences, Massey University, Palmerston North, New Zealand Marcelin Joseph Southern Connecticut State University, New Haven, CT, USA Natalie Jovanovski Melbourne School of Population and Global Health, University of Melbourne, Carlton, VIC, Australia Ranya Kaddour School of Social Science, Western Sydney University, Sydney, NSW, Australia Dev Kapil National University of Singapore, Institute of Systems Science (NUSISS), Singapore, Singapore Shane A. Kavanagh School of Health & Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia Adrian B. Kelly School of Psychology and Counselling, Child Adversity Mental Health and Resilience Theme (Centre for Child Health and Well-being), & Centre for Inclusive Education, Queensland University of Technology, Brisbane, Australia Shose Kessi Faculty of Humanities, University of Cape Town, Cape Town, South Africa Farzana Khan Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, NY, USA Nguyen Khoi Quan College of Health Sciences, VinUniversity, Hanoi, Vietnam Greer Lamaro Haintz School of Health & Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia Leah V. Lamoreaux Sociology Department, California State University, Northridge, CA, USA Rashon Lane Division of Sleep Medicine, Harvard Medical School, Harvard University, Boston, MA, USA Division of Sleep and Circadian Disorders, Departments of Medicine and Neurology, Brigham and Women’s Hospital, Boston, MA, USA Tegan Larin XYX Lab, Monash Art, Design and Architecture, Monash University, Caulfield East, VIC, Australia
Contributors
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Mi-Joung Lee Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia Patricia Chiao-Tzu Lee School of Medicine and Dentistry, Griffith University, Gold Coast, QLD, Australia Department of Medical Research, China Medical University Hospital, China Medical University, Taichung, Taiwan Xiaoli Li College of Health and Public Service (Rehabilitation and Health Services), University of North Texas, Union, TX, USA Pranee Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam Jane M. Lim Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, Singapore, Singapore Supuni Liyanagunawardena University of Sri Jayewardenepura, Nugegoda, Sri Lanka Krystal Lockwood Griffith Criminology Institute, Griffith University, Nathan, QLD, Australia School of Criminology and Criminal Justice, Griffith University, Nathan, QLD, Australia Janet C. Long Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia Nguyen Hoang Long College of Health Sciences, VinUniversity, Ha Noi, Vietnam Megan Lourdesamy Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore Elias Machina Translational Health Research Institute, Western Sydney University, Kellyville, NSW, Australia Lara Maestripieri Department of Political Science and Public Law/IGOP, Edifici MRA, Universitat Autònoma de Barcelona, Bellaterra (Cerdanyola del Vallès), Spain Lactricia Maja The Aurum Institute, Johannesburg, South Africa Nick Malherbe Institute for Social and Health Sciences, University of South Africa, Lenasia, South Africa South African Medical Research Council, University of South Africa Masculinity and Health Research Unit, Cape Town, South Africa Annetta H. Mallon University of Western Sydney, Sydney, NSW, Australia Karine E. Manera Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia
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Contributors
Virginia Mapedzahama Transnational Health Research Institute, Western Sydney University, Penrith, NSW, Australia Moleen Maramba School of Health, Sport and Bioscience, University of East London, London, UK Hayley McKenzie School of Health & Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia Catherine E. McKinley Tulane University School of Social Work, New Orleans, LA, USA Cara Meixner Department of Graduate Psychology, James Madison University, Harrisonburg, VA, USA Wendy Mincer Rehabilitation and Health Services, University of North Texas, Denton, TX, USA Victor Minichiello School of Social Justice, Queensland University of Technology, Brisbane, QLD, Australia Sharon Moonsamy University of the Witwatersrand, Johannesburg, South Africa Mohammad Izzat Morshidi School of Social and Health Sciences, James Cook University, Singapore, Singapore, Singapore Elias Mpofu Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia Rehabilitation and Health Services, University of North Texas, Denton, TX, USA School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa College of Health and Public Service (Rehabilitation and Health Services), University of North Texas, Denton, TX, USA Faculty of Medicine and Health (School of Health Sciences), University of Sydney, Sydney, Australia Faculty of Education (Educational Psychology), University of Johannesburg, Johannesburg, South Africa Natascha Mueller-Hirth School of Applied Social Sciences, Robert Gordon University Aberdeen, Aberdeen, Scotland Rosediani Muhamad Family Medicine Department, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, Malaysia Anniah Mupawose University of the Witwatersrand, Johannesburg, South Africa Olav T. Muurlink School of Business and Law, Central Queensland University, Brisbane, Australia
Contributors
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Rishita Nandagiri London School of Economics and Political Science, London, UK Department of Global Health and Social Medicine, King’s College London, London, UK Sharanya Napier-Raman Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia Vuyolwethu Ncube The Aurum Institute, Johannesburg, South Africa Psychology Department, School of Human and Community Development, Faculty of Humanities, University of the Witwatersrand, Johannesburg, South Africa Ann-Charlotte Nedlund Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden Eva Neely School of Health, Te Herenga Waka, Victoria University of Wellington, Wellington, New Zealand Pearlyn H. M. Neo Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore An Nguyen School of Social Sciences, Monash University, Melbourne, VIC, Australia Hao Thi My Nguyen College of Health Sciences, VinUniversity, Hanoi, Vietnam Huong Thu Nguyen Department of Anthropology, Vietnam National University of Hanoi, Hanoi, Vietnam Anuli U. Njoku Department of Public Health, College of Health and Human Services, Southern Connecticut State University, New Haven, CT, USA Muhammad Naveed Noor Department of Pathology and Laboratory Medicine, Aga Khan University, Karachi, Pakistan Centre for Social Research in Health, UNSW, Sydney, Australia Kayi Ntinda College of Health Professions (School of Rehabilitation Services and Counseling), University of Texas at Rio Grande Valley, Edinburg, TX, USA Anna Olofsson Risk and crisis research centre at Mid Sweden University, Östersund, Sweden Suan Ee Ong Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore Research for Impact, Singapore, Singapore Tricia Ong DeakinTALENT, Graduate Employment Division, Deakin University, Burwood, VIC, Australia
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Contributors
Yvonne Parry College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia Better Communities, Caring Futures Institute, Adelaide, SA, Australia Chloe Parton School of Health, Te Herenga Waka – Victoria University of Wellington, Wellington, New Zealand Viraj Patel Albert Einstein College of Medicine & Montefiore Health System, New York, NY, USA Ann Pederson BC Women’s Hospital and Health Centre, University of British Columbia and Simon Fraser University, Vancouver, Canada Arianna Pelati Department of Developmental and Socialization Psychology, University of Padova, Padova, Italy Christopher Pell Department of Global Health, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands Amsterdam Institute for Global Health and Development (AIGHD), Amsterdam, The Netherlands Amsterdam Public Health Research Institute (Health Behaviors & Chronic Diseases Research | Global Health), Amsterdam, The Netherlands Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands Christopher A. Pepping School of Psychology and Public Health, La Trobe University, Bundoora, VIC, Australia Chris L. Peterson Department of Social Inquiry, La Trobe University, Bundoora, VIC, Australia Epilepsy Foundation, Surrey Hills, VIC, Australia Brid Phillips Centre for Arts, Mental Health and Wellbeing WA, University of Western Australia, Perth, WA, Australia Jason A. Picard College of Arts and Science, VinUniversity, Hanoi, Vietnam Heath Pillen University of the Sunshine Coast, Sippy Downs, Australia Rashmi Pithavadian School of Health Sciences, Western Sydney University, Campbelltown, NSW, Australia Sujith Kumar Prankumar Kirby Institute for Infection and Immunity, UNSW, Sydney, Australia Jake Rance Centre for Social Research in Health, UNSW Sydney, Sydney, New South Wales, Australia Dario Raspanti Department of Political and Social Sciences, University of Florence, Florence, Italy
Contributors
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Kopano Ratele Psychology Department, Stellenbosch University, Stellenbosch, South Africa Zoe Sanipreeya Rice London, UK Santiago Ripoll Institute of Development Studies, University of Sussex, Brighton, UK Scott Rosas Concept Systems, Inc., Ithaca, NY, USA Valeria Saladino Department of Human Sciences, Society and Health, University of Cassino and Southern Lazio of Cassino, Cassino, Italy Natalie R. Sampson University of Michigan-Dearborn, Dearborn, MI, USA Megan Schmidt-Sane Institute of Development Studies, University of Sussex, Brighton, UK John Scott School of Social Justice, Queensland University of Technology, Brisbane, QLD, Australia Bernadette Sebar Griffith University, Southport, Australia Mohamed Seedat Institute for Social and Health Sciences, University of South Africa, Lenasia, South Africa South African Medical Research Council, University of South Africa Masculinity and Health Research Unit, Cape Town, South Africa Maximus Sefotho Faculty of Education (Educational Psychology), University of Johannesburg, Johannesburg, South Africa Maureen Seguin Department of Health Services Research and Policy, Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK Marguerite C. Sendall Department of Public Health, College of Health Sciences, Qatar University, Doha, Qatar Kate Senior School of Humanities, Creative Industries and Social Sciences, College of Human and Social Futures, University of Newcastle, Newcastle, NSW, Australia Zarrin Seema Siddiqui MD Education Unit, College of Health Sciences, VinUniversity, Hanoi, Vietnam Miranda Simes Department of Sociology, Northwestern University, Evanston, Illinois, USA Zenaida P. Simpson Rehabilitation and Health Services, University of North Texas, Denton, TX, USA Nannie Sköld Amsterdam, The Netherlands
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Contributors
Dan J. Spitzner Department of Statistics, University of Virginia, Charlottesville, VA, USA Joe Strong London School of Economics and Political Science, London, UK Shahnaaz Suffla Institute for Social and Health Sciences, University of South Africa, Lenasia, South Africa South African Medical Research Council, University of South Africa Masculinity and Health Research Unit, Cape Town, South Africa James E. Sutton Department of Sociology, Hobart and William Smith Colleges, Geneva, NY, USA Dorinda ’t Hart School of Social Sciences, School of Population and Global Health, University of Western Australia, Perth, WA, Australia Ann Taket School of Health and Social Development, Faculty of Health, Deakin University, Burwood, VIC, Australia Naiema Taliep Institute for Social and Health Sciences, University of South Africa, Lenasia, Johannesburg, South Africa South African Medical Research Council-University of South Africa Masculinity and Health Research Unit, Tygerberg, Cape Town, South Africa Rayner K. J. Tan University of North Carolina Project-China, Guangzhou, China Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore Andrew W. Taylor-Robinson College of Health Sciences, VinUniversity, Hanoi, Vietnam Center for Global Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA Armando Teixeira-Pinto Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia Jacob Thomas Monash University, Melbourne, VIC, Australia Josh Ting School of Medicine and Dentistry, Griffith University, Gold Coast, QLD, Australia Mui-Hua Catherine Toh School of Social and Health Sciences, James Cook University, Singapore, Singapore, Singapore Allison Tong Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia
Contributors
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John W. Toumbourou Centre for Adolescent Health, Royal Children’s Hospital & Murdoch Children’s Research Institute, Parkville, VIC, Australia Centre for Social and Early Emotional Development, School of Psychology, Deakin University, Geelong, Melbourne, VIC, Australia Carla Treloar Centre for Social Research in Health, UNSW Sydney, Sydney, New South Wales, Australia Idorenyin Udoh Rehabilitation and Health Services, University of North Texas, Denton, TX, USA Laura Vanderbloemen Department of Primary Care and Public Health, Imperial College London, London, UK Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA School of Health, Sport and Bioscience, University of East London, London, UK Fathima Wakeel College of Health, Lehigh University, Bethlehem, PA, USA Andrea Waling Australian Research Centre in Sex, Health and Society, La Trobe University, Bundoora, VIC, Australia Christine Walker Epilepsy Foundation, Surrey Hills, VIC, Australia Department of Medicine, University of Melbourne, Parkville, VIC, Australia Paul R. Ward Research Centre on Public Health Policy, Torrens University Australia, Adelaide, SA, Australia Felicity Ware Te Pūtahi a Toi School of Māori Knowledge, Massey University, Palmerston North, New Zealand Kathryn Wenham School of Health and Behavioural Sciences, University of the Sunshine Coast, Sippy Downs, Australia Billy Wheeler College of Arts and Sciences, VinUniversity, Hanoi, Vietnam Andrea Whittaker School of Social Sciences, Faculty of Arts, Monash University, Melbourne, VIC, Australia Britta Wigginton University of Queensland, Brisbane, QLD, Australia Annie Wilkinson Institute of Development Studies, University of Sussex, Brighton, UK Eileen Willis College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, Australia School of Nursing, Midwifery and Social Sciences, Central Queensland University, Norman Gardens, Queensland, Australia
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Contributors
Alex Workman School of Health Science, Western Sydney University, Sydney, NSW, Australia Cathy Chao-Yuan Wu School of Medicine and Dentistry, Griffith University, Gold Coast, QLD, Australia Isaac Yeboah Addo Centre for Social Research in Health, UNSW, Sydney, Australia Cheng Yin College of Health and Public Service (Rehabilitation and Health Services), University of North Texas, Union, TX, USA Mona Zakaria Elbaz Community and Occupational Medicine Department, Faculty of Medicine for Girls, Al-Azhar University, Cairo, Egypt Assata Zerai University of New Mexico, Albuquerque, NM, USA Rong-Fang Zhan Rehabilitation and Health Services, University of North Texas, Denton, TX, USA Anna Ziersch College of Medicine and Public Health, Flinders University, Bedford Park, SA, Australia
Part I Introduction
The Essence of Social Sciences in Global Public Health: An Introduction Pranee Liamputtong
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Social Sciences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Social Science and Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Global Health Inequality and Social Determinants of Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 About This Handbook . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
4 6 9 11 14 15 16
Abstract
Global health cannot be improved if researchers and public health practitioners only rely on a narrow biomedical view. Social scientists such as anthropologists have played a crucial role in keeping the West African Ebola epidemic under control by substituting precarious burial rituals with safer means, instead of recommending abandoning such rituals. Advances in mental health treatments will depend on having a good understanding of how individuals and societies see mental health issues and the treatments as well as the ways that social context influences the success of treatments. Based on the concept of new public health, it is argued that public health practice is situated within the context of broader social issues concerning the underlying social, economic, cultural, environmental, and political determinants of health and disease. This is the link between the social sciences and public health which is the focus of this handbook. This chapter sets the background for this handbook. It will discuss the valuable contribution of social sciences to global public health. Global public health researchers and practitioners would gain essential knowledge from engaging with social scientists. In particular, the chapter discusses issues relating to the social sciences, the P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_1
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P. Liamputtong
relevance of social sciences to global public health, global health inequalities, and social determinants of health. The chapter also provides a brief description of this handbook. Keywords
Social sciences · Humanity · Global public health · Social issues · Societal challenge · Global health inequality · Social determinants of health
1
Introduction Without the humanities and social sciences, hard science and technology can do little to resolve complex societal challenges. Wise governments will find ways to incorporate that insight. (Shah 2020, p. 295)
A new coronavirus (SARS-CoV-2) emerged in December 2019 in Wuhan, China. Since then, the virus had spread to virtually all corners of the globe. The World Health Organization declared it a global pandemic which has led to a massive global public health campaign to slow the spread of the virus (Van Bavel et al. 2020, p. 460). What has this got to do with the social sciences? Ferreira and Serpa (2020, p. 1) say this clearly: This relevance of the relationship between COVID-19 and social sciences results from the fact that the disease is shaped by cultural elements that are studied in social sciences. Epidemics and pandemics have varied effects on societies. These effects are noticeable at the level of societies’ beliefs, institutions, and social, demographic, economic, and political structures.
As witnessed, many efforts to develop pharmaceutical interventions for the prevention and eradication of Covid-19 have been established and continue to do so. While this is happening, the social sciences can offer crucial insights into the management of the pandemic and its impacts (Van Bavel et al. 2020, p. 460). Global pandemics such as the Covid-19 outbreak necessitate “the timely” identification of not only epidemiological data but also research findings that are related to the social sciences such as the perceptions of disease, social practices that might lead to the spread of the disease, individuals’ health-seeking behaviors, models of health care delivery, and barriers to health care. Historically, social scientists have markedly contributed to a good understanding of infectious disease outbreaks as well as responses to them by providing social science data that biomedical science cannot do (Hewlett et al. 2005; Koller et al. 2006; Koons 2010). In recent time, the work of social scientists during the Ebola outbreak in West Africa was “actively, explicitly, and openly” accepted and adopted by international outbreak response organizations such as the World Health Organization (WHO) and UNICEF (Abramowitz et al. 2015; Anoko 2019; Ferme 2014; Richards and Mokuwa 2014; Vindrola-Padros et al. 2020).
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Global health cannot be improved if researchers and public health practitioners only rely on a narrow biomedical view. Shah (2020, p. 295) contends that “epidemics are social as well as biological phenomena.” Social scientists such as anthropologists have played a crucial role in keeping the West African Ebola epidemic under control by substituting precarious burial rituals with safer means, instead of recommending abandoning such rituals. Advances in mental health treatments will depend on having a good understanding of how individuals and societies see mental health issues and the treatments as well as the ways that social context influences the success of treatments. Shah (2020, p. 295) puts it clearly: Scientific and technological innovations are necessary, but enabling them to make an impact requires an understanding of how people adapt and change their behaviour. Poverty and inequality call even more obviously for expertise beyond science and maths.
During the Covid-19 pandemic, vaccine hesitancy or refusal is clearly a social phenomenon than a medical one. According to Shah (2020, p. 295), the solutions to this will not depend on medical breakthroughs, “but on insight from anthropologists . . . who have done much to understand people’s decisions about whether to vaccinate themselves and their children.” Public health may refer to the health of the public, the health profession, health services, the health care system, and appropriate knowledge and techniques (Turnock 2016; Liamputtong 2022). Regardless of how it is perceived, public health aims to promote and improve the health of all people and to prevent injury, disease, and premature death. Public health is also about the prevention of illness, disease, and injury, as well as the promotion of health, wellbeing, and quality of life of people (Fleming 2019; Liamputtong 2022). Globally, public health efforts have contributed significantly to the improvement in the health status of populations. It will continue to play an important role in dealing with new challenges people might face in the future (Turnock 2016; Liamputtong 2022). Based on the concept of new public health, it is argued that public health practice is situated within the context of broader social issues concerning the underlying social, economic, cultural, environmental, and political determinants of health and disease (Liamputtong 2022). This is the link between the social sciences and public health which is the focus of this chapter. While public health is mainly concerned with the populations of a particular community or nation (Karkee et al. 2015), global health emphasizes public health issues which may include national boundaries. They may affect populations globally due to, for example, global pandemics, the process of globalization, and other exceptional occurrences that require collaboration between nations and global institutions (Shelton et al. 2018). Global health has been referred to differently by different scholars. According to Kickbusch (2006), global health is related to health issues that cut across “national boundaries.” It requires global actions that can shape the health and wellbeing of people. Koplan et al. (2009, p. 1995) provide a broader definition, arguing that
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global health is “an area for study, research, and practice that places a priority on improving health and achieving equity for all people worldwide.” Beaglehole and Bonita (2010) suggest that global health necessitates internationally collaborative research and actions that can promote health for all. Importantly, Battams and Matlin (2013) suggest that a primary goal of global health is to reduce health inequities around the globe. Warwick-Booth and Cross (Warwick-Booth and Cross 2018, p. 2 of Chap. 1) contend that “this is ideological in its basis because improving health entails addressing the social and economic inequalities that underpin and cause poorer health.” However, global public health has been defined, the social sciences have made critical contributions to individual, population health, and global public health (La Placa and Morgan 2023). As a result, global public health has increasingly become interdisciplinary. It encompasses health promotion, health prevention, and health care that necessitates contributions from multiple social science disciplines, such as anthropology, sociology, behavioral sciences, social psychology, history, economics, law, environmental science, and biomedicine, just to name a few (Karkee et al. 2015; La Placa and Morgan 2023). This chapter sets the background for this handbook. It discusses issues relating to the social sciences, the relevance of social sciences to global public health, global health inequalities, and social determinants of health. The chapter also provides a brief description of this handbook.
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The Social Sciences Without the humanity and social sciences, hard sciences and technology can do little to resolve complex societal challenges. (Shah 2020, p. 295)
The social sciences emerged in the nineteenth century. They first appeared as the discipline of sociology, political economy, and the “moral sciences” which was an initial form of psychology. Nowadays, debates about which disciplines are included in the social sciences are still going on. To Bos (2020, p. 15), this shows that “the social sciences as a whole are still a collection of rather loosely connected fields of developing knowledge.” So, what counts as the social sciences? Shelton et al. (2018, p. 1) broadly define social sciences to encompass various disciplines, including, but not limited to, anthropology, sociology, history, psychology, political science, and economics. Toulmin (2015) suggests that the social sciences embrace sociology, anthropology, human geography, history, politics, economics, psychology, political science, women studies, and development studies. These are disciplines that examine the function of our societies at both the local and global levels (Toulmin 2015). According to Ayee et al. (2014, p. 4), social science disciplines embrace wider disciplines. These include:
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Anthropology
Women's studies
Political science
Sociology
Linguistics
International studies
Social psychology
Education
Development studies
Media studies
Geography
History
Law
Communication studies
Demography
Ciminology
Information science
Business studies
The subject matter of the social sciences is people and their institutions (Bryman 2022). The social science discipline examines social facts and phenomena that occur in individuals, communities, institutions, societies, and cultures (Tuckett 2019; Bos 2020; Kanter et al. 2020). Essentially, social scientists explore social realities that research participants embrace and respond to and interpret those realities within the sociocultural and political context in which they occur (Van Koppen et al. 2018; Ferreira and Serpa 2020). An infamous postwar American social scientist C. Wright Mills (1959) suggested that our “private troubles” are in fact “public issues.” His perspective is situated within the discipline of sociology, but this theoretical position can be applied to other social sciences. C. Wright Mills’s theoretical standpoint has bestowed social science role that contributes significantly to public discourse in the present day (Michie and Cooper 2015). Taking the position of C. Wright Mills to examine troubles around the world now, so many public issues which greatly affect people’s private problems are visible. These are, for example, wars, food insecurity, migration, climate change, sustainable resource utilization, and global public health. Surely, all these public issues have a social science dimension including the sociocultural, political, and economic circumstances which promote or impede such change. As individuals’ private troubles are inextricably intertwined with public issues, these private problems will require explanations and answers. The social sciences are not just about discourse and insight (Michie and Cooper 2015). They are also about finding evidence. This is when research is essential and appropriate research methods become important. Social science research embraces diverse ontological,
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epistemological, and methodological approaches (Moon et al. 2019; Lewis et al. 2023). It also employs different methods and techniques to make sense of social occurrences. Social science research necessitates an insight into people as individuals and how they connect with society at large (Toulmin 2015). Often, it requires the use of less quantitative research approaches (Toulmin 2015). Social scientists hold the view that knowledge is “a re-presentation or reconstruction of the world around us” (Toulmin 2015, p. 125). Thus, knowledge is socially constructed. Social constructivists employ the qualitative approach to examine social issues (Burr 2019; Liamputtong and Rice 2021). However, social science research embraces both qualitative and quantitative methods. Often, social researchers adopt the mixed methods approach in their research (Weber 2011; Ayee et al. 2014). Regardless of the approaches used, a common thread of “explaining our social world” is very strong in social science research (Ayee et al. 2014). The contribution of medical anthropology to global public health is very clear. For decades, medical anthropology has significantly contributed to a social sciences perspective in global health. Many medical anthropologists have worked on global health. Many physicians also held a degree in anthropology after medicine (e.g., Paul Farmer and Arthur Kleinman) and used anthropological knowledge to address the complex questions around culture and health and illness. Anthropologists have also long been very active in epidemics and pandemics: “Questions regarding contagion, chains of transmission, inequalities and social apprehension of phenomena pertaining to uncertainty, disease and death are all of great scientific interest to anthropologists” (Bourrier et al. 2019, p. 2). The ethnographic method, a defining methodological approach, has been used by medical anthropologists (and in recent times, many health sociologists), in their research. The approach has played an important role in “shaping how global health has been conducted and studied over the past 30 years and has provided both a touchstone and counterpoint to the other social science disciplines’ work on the topic” (Harris and Shaffer 2022, p. 442). Nevertheless, the social sciences tend to be seen as too “liberal” and “soft” (Shelton et al. 2018) and devalued due to the rise in biomedicine (Bayer and Galea 2015). The scientific rigor of the social sciences is often questioned by hard science practitioners such as those in biomedical science and population health (Ayee et al. 2014). However, social science scholars have argued that the social sciences are the most important fields of study relevant to human beings (Berard 2009; Hunt and Colander 2010). Precisely, Ayee et al. (2014, p. 6) argue: To understand society is to learn not only the conditions that limit the lives of human beings but also the opportunities open to them to improve their conditions. Increasing knowledge of human society is as important as learning more about mathematics, physics, chemistry, or engineering, for . . . one cannot reap the benefits from learning how to make better automobiles and skyscrapers, travelling in space, or constructing faster computers.
In biomedical science, physicians may believe that biomedical sciences have contributed, and will continue, to advance the better health of individuals (Ayee et al. 2014, pp. 6–7). But Eisberg and Kleinman (1981, p. ix) argue, “an understanding of
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the social sciences is equally important.” Importantly, the social sciences provide physicians with “empirically verifiable knowledge that serves as a foundation for understanding and influencing individual, group and societal actions relevant to improving and maintaining health” (National Academy of Sciences 2004, p. 5). Thus, epidemiologists have become increasingly appreciative of the contribution of the social sciences in patterns and trends of mortality and morbidity rates around the globe around the twentieth century (Alber et al. 2021). Decades later, many social sciences theories were included in health education and higher degrees in public health programs (Alber et al. 2021). Nowadays, there are social science subjects, such as medical sociology, medical geography, health economics, and the history of medicine, introduced in health science in many universities across the globe (Ayee et al. 2014).
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Social Science and Global Health The social . . . sciences made invaluable contributions as a core part of the public health arsenal to help stop the spread of such deadly infectious diseases and other conditions. (Alber et al. 2021, p. E220) A study in HIV/AIDS is not only a medical and public health issue but also involves disciplines in the social sciences such as social work, sociology, economics and demography. (Ayee et al. 2014, p. 5)
The social sciences have made significant contributions to global public health. Despite differences in methods and theories that each social science field use, all social sciences have shared emphasis on recognizing and tackling “persistent social realities and inequalities” as well as their common interest in promoting an understanding of “social forces” which form the health of populations (Shelton et al. 2018, p. 1). Brosnan (2013, p. 5) also contends that social science permits researchers to “connect research to ‘the fate of our times’ (Frank 2013); it situates our understanding of specific, local issues within a broader social and historical context.” This is clearly seen in the case of the recent pandemic that plagued all corners of the world in the last few years. According to Shelton et al. (2018, p. 1), the contributions of social science research to global public health may include several (but not limited to) issues as illustrated in Fig. 1. Most mortalities nowadays are related to social factors, for example, poor diet, lack of physical exercise, use of drugs and alcohol, tobacco use, sexual behavior, and lack of access to health care. Much research in the last few decades has shown the usefulness of interventions based on social science theory for preventing cardiovascular disease, alcohol-related issues, cancer, HIV, mental health, and homelessness. These studies indeed show marked contributions of social science to public health practice (VanDevanter et al. 2003).
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Role of policy, power, and politics in structuring the health of populations
Health consequences of stigma, prejudice, and discrimination Impact of socioeconomic position
Social science & global public health Consideration of social context in the development and implementation of multilevel interventions
Stress
Social support
Fig. 1 The contribution of social sciences in global public health
According to Karvonen et al. (2018, p. 4), knowledge and critical understandings of health and illness gained from the discipline of medical sociology are particularly valuable for health care professionals and policymakers: “They highlight the associations and causal relations of health and illness and of societal, social, and behavioral factors. Health and illness can be understood better by scrutinizing a person as an individual, as part of a social group, and part of society in general.” The sociology of health can be valuable for local decision-making and health policy planning at the local, regional, national, or international levels. Recent issues concerning the health of vulnerable groups and cross-border health care attest to the value of the sociology of health. Medical sociology can help to identify “the social background, inequalities, and the effects of social changes and structures that lie behind access to and quality of care” (Karvonen et al. 2018, p. 4). Karvonen et al. (2018, p. 4) remind global public health practitioners that “the tendency of biomedicine to focus on phenomena located ‘under the skin’ needs to be supplemented with knowledge of what goes on ‘outside the skin’.” Global public health would benefit from a collaboration involving medical sociology, for example, when “posing research questions and framing scientifically relevant approaches.” The recent pandemic illustrates the contribution of social science disciplines clearly. The Covid-19 pandemic emerged as the world’s greatest health concern. Less than 2 years later, it has sickened more than 280 million people around the
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globe, and over 5.4 million people died from it (Kaiser Family Foundation [KFF] 2022). Soon afterward, vaccines were developed with marked speed and are now the main measure to control and hope for the world to return to normalcy. However, hesitancy concerning these vaccines is a significant barrier to success (Larson et al. 2022, p. 1409). The World Health Organization, in 2019, referred to “vaccine hesitancy” as one of the top ten threats to global public health (World Health Organization 2019). Why do people hesitate or decline vaccines? This is when social science research methods and theories can help us to understand the hesitancy and refusal of Covid-19 vaccines. Jensen et al. (2021, p. 5) write: If anything, the current pandemic has been a powerful reminder that health is much more than just a medical matter, as it is embedded within a complex set of social, economic and political determinants.
Below is a table that shows the contribution of some social science disciplines in examining Covid-related health issues (adapted from Ferreira et al. 2020, p. 40) (Table 1). Although there have been some interests in the value of the social sciences in public health, social scientists are generally turned to when global public health is faced with “cultural problems” that medical or technical solutions fail to ameliorate. This is clearly seen in the early days of the HIV/AIDS epidemic when the contribution of social science to prevention movements was seen as necessary. With the recent Ebola outbreak, global public health turned to anthropologists to help with the identification of means that can alleviate cultural barriers and obstacles to modifying behaviors of local people and practices (Burton-Jeangros et al. 2019, p. 282).
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Global Health Inequality and Social Determinants of Health The pursuit of health equity is widely held to be global health’s raison d’être; and yet, the deep inequities laid bare by the current pandemic underscore that the field must do more and we must do better. (Jensen et al. 2021, p. 1)
Clearly, people are inhibited in “an unequal world” and undisputedly health inequality prevails (Warwick-Booth and Cross 2018). Why does health inequality happen around the globe? This is when researchers and practitioners can adopt social science perspectives to find real answers. Warwick-Booth and Cross (2018, Chap. 1) suggest that the “social scientific perspectives on global health inequality may inform our understanding of the issues and how they can be addressed.” And as Bhambra and de Sousa Santos (2017) suggest, new forms of inequality (and thus injustice) will occur, and this is a problem that will need to be dealt with in the fields of social science (Karvonen et al. 2018). Some several conditions and situations have created basic inequalities that not only contribute to the ill-health of people but also establish a recurrence of adverse physical
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Table 1 The contribution of some social science disciplines in examining Covid-19 Social science discipline Anthropology
Sociology
Social psychology
Psychology Demography Geography
Political science
History Communication
Economy
International relations
Covid-19-related health issues ● Cultural analysis of risk and contagion ● Processes of stigmatization of the “other” ● Cultures of fear ● An ethnography of zoonoses ● Social order and crises ● Social inequalities in health ● Social construction of epidemic and contagious diseases ● Social space of health and collective management of disease and contagion ● Public health policies ● Social distance and confinement ● Science and scientific controversies ● Social representations on the pandemic ● Attitudes toward risk ● J ¼ health attitudes and behaviors ● Assessment and intervention in adaptation to disease and health promotion ● Violence and social confinement ● Social ties and new forms of solidarity ● Mental health consequences of social isolation ● Analysis of psychological resilience ● Demographic structure and prevalence of the disease ● Demographic vulnerability and Covid-19 ● Genesis and pandemic spread of SARS-Cov-2 ● Metropolises, city networks, and pandemic spread ● Migrations and pandemics ● International governance and multilateralism ● Governance and public policy ● Political institutions, political attitudes, and behavior ● Public opinion and political communication ● Pandemics and nationalism ● History of epidemics, pandemics, and contagion ● History and collective management of the disease and contagion ● Digital transformation, ICT, and health surveillance ● Digital literacy ● Telemedicine and teleconsultation ● Dynamics of capitalism and pandemic ● Economy and health ● Structure of employment and unemployment ● Macroeconomic vulnerabilities ● Layoff ● Teleworking ● Articulation and/or competition between countries in fighting the pandemic
and mental health consequences for many individuals, and groups within the current sociocultural, economic, and political contexts around the world (Bartley 2016; WHO 2017; Liamputtong 2019). Thus, there exists health inequality among populations.
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The health status of people occurs simultaneously with a social gradient. Generally, individuals who are located at the lower ladder of the social hierarchy have a shorter life expectancy and greater risk of ill-health than those who are high up in the social ladder (Marmot and Bell 2016; Warwick-Booth and Cross 2018; Oldroyd 2022). People with a higher position in society will enjoy better health, physical and mental, outcomes than those with lower positions (Oldroyd 2022). The nature and magnitude of this social gradient will differ between nations, but it usually includes wealth, income, education, occupation, gender, ethnicity as well as an area of residence (Marmot and Bell 2016). The social gradient in health influences the lives of people both in rich and poor countries. Within Western countries, the social gradient not only exists among people from lower socioeconomic backgrounds but also prevails in marginalized groups, including the Indigenous people and people from minority groups including migrants and refugees (see Moore et al. 2015; Khan et al. 2017). However, the social gradient in health has a significant impact on those in poorer corners of the globe. The greater the social disadvantages, the worse health will be the consequence (Oldroyd 2022). This leads Marmot and Bell (2016, p. 238) to argue that “not only the poorest but the majority have worse health and shorter lives than the best off in society.” Health inequality refers to “health difference” which is closely linked with social disadvantage and advantage (Braveman 2016, p. 38). Globally, health inequalities have occurred across several conditions and diseases such as infectious diseases, chronic noncommunicable diseases, malnutrition, injuries, maternal and child health outcomes, and mental health (Diseases and Injuries Collaborators 2020; Marmot et al. 2020; Adjaye-Gbewonyo and Kawachi 2023). This inequality disproportionately influences the health of the most disadvantaged members of society. Because of their low levels of wealth, prestige, influence, or acceptance in society, socially disadvantaged people are adversely impacted by health inequalities. These people include individuals from low socioeconomic backgrounds, members of ethnic minority groups and sexual minority groups, people with disabilities, women, and many community groups who have historically been made marginalized, discriminated against, or excluded from others (Marmot et al. 2020; Jensen et al. 2021; Adjaye-Gbewonyo and Kawachi 2023). Often, health inequalities are the consequences of social inequalities. Generally, those from more advantaged groups will have better health than those from disadvantaged groups (Keleher and MacDougall 2021; Warwick-Booth and Cross 2018). However, like the social gradient in health discussed above, health inequality unfairly impinges on the health of people in poorer countries (Turnock 2016). Poverty is a compelling cause of global health inequalities (Warwick-Booth and Cross 2018, Chap. 1). This inequality has contributed to the psychosocial burden of many people (Kawachi and Kennedy 2006; Cushing et al. 2015) and impacted their health outcomes. Health inequalities occur along aspects of race or ethnicity, social class or socioeconomic position, gender, sexual orientation, immigrant status, disability status, geography, religion, and so on (Warwick-Booth and Cross 2018;
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Liamputtong 2019, 2022). When examining the mortality rate from Covid-19 along race or ethnicity from March through July 2020 in the UK, for example, the rate among Black Caribbean women was twice that among White women. Those from Black African backgrounds had 2.7 times the mortality of those of White ethnic backgrounds (after adjusting for age, sociodemographic factors, and preexisting health conditions). Geographically, individuals living in more deprived neighborhoods in England have on average lower life expectancies compared to those living in less deprived neighborhoods (Warwick-Booth and Cross 2018; Marmot et al. 2020; Adjaye-Gbewonyo and Kawachi 2023). Intrinsically, health inequalities are interwoven with health inequities (Braveman 2016). Health inequities refer to inequalities in health that are presumed to be unfair or arise from some kind of injustice (Keleher and MacDougall 2021). For instance, Indigenous people, people with disabilities, and those from ethnic minorities experience health inequities because of inadequate or lack of access to health care or people living in rural areas confront health inequities due to the unfair distribution of health services. Thus, reducing or eliminating health inequalities necessitates moving toward health equity. To reduce health inequity and inequality, profound change in the ways that society is organized is crucial (Warwick-Booth and Cross 2018). Inequalities have been addressed through the concept and practice of social justice (Braveman 2016; Taket 2022). It has been argued that social justice approaches to health are crucial for global public health and any health care system so that individuals will have the right to achieve good health outcomes (Wilkinson 2005; Wilkinson and Pickett 2006; CSDH 2008; Keleher and MacDougall 2021). Injustices occur when some burden is unwarrantedly impacted on some individuals and groups, and they lack access to the benefit to which they are entitled (Turnock 2016). Justice means that there is an equitable distribution of burdens and benefits among populations.
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About This Handbook
This handbook comprises 110 chapters which sit in nine parts. Part one discusses the social science and health disciplines ranging from medical sociology to social medicine. In part two, chapters include theoretical frameworks in social sciences including strong structuration theory, intersectionality, gender, decolonizing methodology, social justice, human rights, and so on. Part three discusses research methodologies such as social constructionism, symbolic interactionism, critical theory, feminist methodology, qualitative research, and mixed methods research, in social sciences and global health. This is followed by part four which embraces chapters on research methods used in social science and global health research. This part embraces useful research methods such as digital health research methods, community mapping method, photovoice, the Delphi method, social surveys, and systematic reviews. The role of social science in infectious illnesses such as Covid19, influenza, malaria, and hepatitis is discussed in chapters in part five, and its role in chronic illnesses such as breast cancer, HIV/AIDS, sickle cell, dementia, epilepsy, and addiction in part six. Social science research in sexuality, sexual and
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reproductive health, and mental health is provided in part seven. Part eight includes chapters that discuss social science research and the health of socially excluded and marginalized groups such as refugees and asylum seekers, stateless people, people without a home, prisoners, women and girls who are subjected to sex trafficking, gender minorities, and older persons. The last part, part nine, embraces chapters regarding social science research and climate change. Chapters in this handbook will provide readers with extensive knowledge concerning the social science disciplines, as well as theories, methodologies, and methods adopted in the social sciences. Readers will also gain knowledge from examples of research that discuss the role of social sciences in global public health from a variety of settings both in the Global North and the Global South.
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Conclusion and Future Directions Without human insights, data and the hard sciences will not meet the challenges of the next decade. (Shah 2020, p. 295)
This chapter has discussed the valuable contribution of the social sciences to global public health. Global public health researchers and practitioners would gain essential knowledge from engaging with social scientists (Burton-Jeangros et al. 2019; Alber et al. 2021). The social sciences have over time clowned an important role in the development and application of theories and research methods for discerning and responding to global public health issues (Alber et al. 2021). Despite the fact that the social sciences are devalued, and the scientific rigor of the social sciences is also often questioned by the hard sciences, as this chapter has demonstrated, the social sciences can offer valuable benefits to global public health. Chapters within this handbook also attest to the claim made here. More than 100 years ago, Science magazine published an article on lessons that researchers and practitioners can learn from the Spanish flu pandemic. The article pointed out three main factors that inhibit prevention (Van Bavel et al. 2020, p. 467): • People did not appreciate the risks they face • Shutting themselves up in rigid isolation as a means of protecting other goers was seen as against human nature • People often unconsciously act as a continuing danger to themselves and others Van Bavel et al. (2020) contend that the lessons outlined above may also be related to future pandemics and public health crises. This has been seen clearly with recent epidemics and pandemics. But they can be prevented to happen again in the future if researchers and practitioners have a good understanding of people’s needs, motivation, and behavior and how society should operate. This is what the social sciences can offer. Although history has provided examples that the social sciences have contributed to tackling serious global health issues, social science disciplines will need to continue
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providing guidance and solutions as people continue to encounter astounding “public health challenges of the twenty-first century” (Alber et al. 2021, p. E225).
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Cushing L, Morello-Frosch R, Wander M, Pasto M (2015) The haves, the have-nots, and the health of everyone: the relationship between social inequality and environmental quality. Annu Rev Public Health 36:193–209 Diseases and Injuries Collaborators (2020) Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet 396(10258):17–23. https://doi.org/10.1016/S01406736(20)30925-9 Eisberg L, Kleinman A (eds) (1981) The relevance of social science for medicine. D. Reidel, Dordrecht Ferme M (2014) Hospital diaries: experiences with public health in Sierra Leone. Cult Anthropol. http://www.culanth.org/fieldsights/591-hospital-diaries-experienceswith-public-health-insierra-leone Ferreira CM, Serpa S (2020) COVID-19 and social sciences. Societies 10:100. https://doi.org/10. 3390/soc10040100 Ferreira CM, Sá, MJ, Martins JG, Serpa S (2020) COVID-19 and social sciences. Societies 10:100. https://doi.org/10.3390/soc10040100 Fleming ML (2019) Defining health and public health. In: Fleming ML (ed) Introduction to public health, 4th edn. Elsevier, Chatswood, pp 3–15 Frank A (2013) From sick role to practices of health and illness. Med Educ 47:18–25 Harris J, Shaffer JD (2022) Comparing disciplinary engagement in global health research across the social sciences. Soc Sci Q 103:439–454 Hewlett BS, Epelboin A, Hewlett BL, Formenty P (2005) Medical anthropology and Ebola in Congo: cultural models and humanistic care. Bull Soc Pathol Exot 98(3):230–236 Hunt E, Colander DC (2010) Study guide for social science: an introduction to the study of society. Prentice Hall PTR, New York Jensen N, Kelly AH, Avendano M (2021) The COVID-19 pandemic underscores the need for an equity-focused global health agenda. Humanit Soc Sci Commun 8:15. https://doi.org/10.1057/ s41599-020-00700-x Kaiser Family Foundation (2022) The end of the COVID-19 public health emergency: details on health coverage and access. Retrieved on 4 October 2023 from https://www.kff.org/coronaviruscovid-19/ Kanter DR, Del Grosso S, Scheer C, Pelster DE, Galloway JN (2020) Why future nitrogen research needs the social sciences. Curr Opin Environ Sustain 47:54–60 Karkee R, Comfort J, Alfonso H (2015) Defining and developing a global public health course for public health undergraduates. Front Public Health 3:66. https://doi.org/10.3389/fpubh.2015. 00166 Karvonen S, Kestilä LM, Mäki-Opas TE (2018) Who needs the sociology of health and illness? A new agenda for responsive and interdisciplinary sociology of health and medicine. Front Sociol 3:1–5. https://doi.org/10.3389/fsoc.2018.00004 Kawachi I, Kennedy BP (2006) The health of nations: why inequality is harmful to your health. New Press, New York Keleher H, MacDougall C (2021) Understanding health, 5th edn. Melbourne, Oxford University Press Khan AM, Urquia M, Kornas K, Henry D, Cheng SY, Bornbaum C, Rosella LC (2017) Socioeconomic gradients in all-cause, premature and avoidable mortality among immigrants and longterm residents using linked death records in Ontario, Canada. J Epidemiol Community Health 71:625–632 Kickbusch I (2006) The need for a European strategy on global health. Scand J Public Health 34: 561–565 Koller DF, Nicholas DB, Goldie RS, Gearing R, Selkirk EK (2006) When family-centered care is challenged by infectious disease: pediatric health care delivery during the SARS outbreaks. Qual Health Res 16(1):47–60. https://doi.org/10.1177/1049732305284010 Koons A (2010) Role of “anthropological” emergency relief. Anthropol News 51(7):29. https://doi. org/10.1111/j.1556-3502.2010.51729
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SR, Willer R (2020) Using social and behavioural science to support COVID-19 pandemic response. Nat Hum Behav 4:460–471 Van Koppen JJCSA, Lidskog R, Ott K, Voget-Kleschin L, Wong CML (2018) The significance of meaning. Why IPBES needs the social sciences and humanities. Innovation 31(Supp 1): S38–S60. https://doi.org/10.1080/13511610.2017.1348933 VanDevanter N, Shinn M, Niang KT, Bleakley A, Perl S, Cohen N (2003) The role of social and behavioral science in public health practice: a study of the New York City Department of Health. J Urban Health 80(4):625–634 Vindrola-Padros C, Chisnall G, Cooper S, Dowrick A, Djellouli N, Symmons SM, Martin S, Singleton G, Vanderslott S, Vera N, Johnson GA (2020) Carrying out rapid qualitative research during a pandemic: emerging lessons from COVID-19. Qual Health Res 30(4):2192–2204 Warwick-Booth L, Cross R (2018) Global health studies: a social determinants perspective. Polity Press, Cambridge, UK Weber M (2011) Methodology of the social sciences (trans: Edward S, Henry F). Transaction Publishers, New Brunswick. (Originally published in 1949 by the Free Press of Glencoe, IL) Wilkinson RG (2005) The impact of inequality: how to make sick societies healthier. New Press, New York Wilkinson RG, Pickett KE (2006) Income inequality and population health: a review and explanation of the evidence. Soc Sci Med 62(7):1768–1784 World Health Organization (2017) 10 Facts on health inequities and their causes. Retrieved on 4 October 2023 from http://www.who.int/features/factfiles/health_inequities/en/ World Health Organization (2019) Ten threats to global health in 2019. Retrieved on 4 October 2023 from https://www.who.int/news-room/spotlight/ten-threats-to-global-health-in-2019
Part II Social Sciences and Health Disciplines
Medical Sociology Paul R. Ward
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Why Was the Author Drawn to Study and Subsequently Undertake Research in Medical Sociology?: Positioning the Author Self . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Defining Medical Sociology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Similarities Between Social Epidemiology and Medical Sociology . . . . . . . . . . . . . . . . . . . . . . . . 4 What Is the “Social” in Medical Sociology? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Is There a Role for “Lay Theory” in Medical Sociology? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Case Study On Medical Sociological Research On “Trust In Healthcare” . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter presents a discussion and critique of medical sociology. The chapter starts with a history of why the author trained in and has had a 25-year (so far) academic career in medical sociology. The chapter then moves on to defining medical sociology and exploring the key contemporary themes taught and researched in the discipline. In order to define medical sociology, the chapter provides definitions of the key terms and explores their historical and contemporary meanings. In terms of “medical,” the chapter explores both epidemiology and social epidemiology since they relate most closely to medical sociology. In terms of “sociology,” the chapter provides descriptions of both the academic discipline of sociology and the adjective “social.” In order to provide concrete examples of medical sociology, the chapter then provides a description of the author’s career in research on applying concepts from the sociology of trust to public health problems, examining trust in healthcare professions, healthcare P. R. Ward (*) Research Centre on Public Health Policy, Torrens University Australia, Adelaide, SA, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_3
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systems, and broader social systems that impact on health and illness. Overall, this chapter provides a description, examination, critique, and articulation of medical sociology. Keywords
Medical sociology · Social epidemiology · Sociology of trust · Public health · Social theory
1
Introduction
There have been a plethora of academic textbooks covering the broad area of medical sociology, health sociology, and the sociology of health and illness. These books cover the rather voluminous set of theories, methodologies, and content areas that are currently seen to fit within medical sociology. No doubt, as we move through and potentially past the COVID-19 pandemic, we may see new books written and new chapters added to subsequent editions of the books on a bookshelf. There are also very specific books within medical sociology that cover topics such as social inequities in health, books on particular population groups that suffer poorer health than other groups (including social class, gender, ethnicity) and theoretical books on issues such as trust, risk, stigma, discrimination, power, and alienation This chapter cannot do justice to surveying, describing, and critiquing even the books on my particular bookshelf, never mind the literature that sits outside of my historical or theoretical purview. Therefore, this chapter represents a rather partial overview of “medical sociology,” seen through the author’s particular lens – a white, cis-gender male, middle-class, applied sociologist from working-class roots in Northern England.
1.1
Why Was the Author Drawn to Study and Subsequently Undertake Research in Medical Sociology?: Positioning the Author Self
I was born in the early 1970s and my formative years were spent watching the destruction of the traditional working classes in England through the neoliberal policies of the Conservative government and in particular Margaret Thatcher (the Prime Minister of England at the time). The traditional collective power of Unions was eroded, public services were privatized, and the modern notion of the responsible citizen was concretized. Margaret Thatcher famously said “there’s no such thing as society. There are individual men and women and there are families. And no government can do anything except through people, and people must look after themselves first” (quote in The Guardian newspaper, 8th April 2013 – https://www. theguardian.com/politics/2013/apr/08/margaret-thatcher-quotes). Watching, both
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firsthand and vicariously on TV news reporting, the implications of a government dismantling the safeguards for the working class in terms of increasing unemployment, poverty, discrimination, alienation, and the loss of “working-class pride” in towns and cities across Northern England led me into the arms of studying sociology. I wanted to understand how to make life better for the working classes, and as I have spent the last 25 years in academia, this has extended to any other group that is discriminated against and suffers through inequities in life circumstances, life chances, and ultimately illness, disease, disability, and death. Since my formative years in Northern England to my current position as a tenured Professor, it has become clear that most neoliberal governments globally follow the same philosophy of Margaret Thatcher (although those ideas can be traced back to economic rationalists such as Adam Smith), which has become a kind of unshakable hubris – governments move the responsibility for health and illness to individuals (aka citizens), who become both the “problem” and “solution,” thereby absolving government responsibility. In a rather perverse way, this was incredibly clever politics – if the “problem” for illness becomes the individual citizen (e.g., they drink too much alcohol, they do not exercise enough, they do not eat enough vegetables) then the “solution” is for that individual to change their behavior. . .. The job of the government is then taken out of the equation (some may say that neoliberal governments can then get on with their preferred job of making the rich richer and healthier, and the poor poorer and sicker (Scambler 2001, 2002; Ward 2010). However, even as a child growing up during Thatcherite times, I could not help but think “surely the illnesses being seen in working-class areas are linked to poverty which means that people don’t have enough money for appropriate food, heating, good housing conditions, etc., and surely the poverty is linked to job losses and loss of income in those areas that rely on heavy industry, and surely the job losses are linked to government policy to privatize coal mines, ship building . . . so surely the illnesses are linked to government policies rather than individual behavior of working-class men and women?” Without knowing it at the time, I was asking some key questions that medical sociologists have been grappling with since the time of Karl Marx and Fredrich Engels to the present day. Indeed, the COVID-19 pandemic is, unfortunately, a powerful example of the same philosophy – high-income countries getting preferential access to vaccinations over countries in sub-Saharan Africa, people in more stable and higher-income jobs being able to withstand the economic impacts of lockdowns, people in slum areas of India being less able to “physically distance” from others over people in multi-room houses with front and back gardens, people with financial capacity being able to purchase rapid antigen tests more than people with limited or no money and so on. So, for me, undertaking research in medical sociology takes on a very personal and political flavor – I want to see justice for population groups that experience inequities in illness, disease, disability, life chances, and death. Sociological and feminist scholars frequently quote the saying “the personal is political” to articulate what C Wright Mills meant when he argued that individual experiences are inextricably connected with the greater social and historical context (Wright Mills 1959). So for me, medical sociology is a personal, intellectual, and political endeavor.
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Defining Medical Sociology
Within this chapter, the term “medical sociology” is used although it is recognized this is a rather contentious term. In an analysis of the history of “medical sociology” in the USA, UK, and Australia, Collyer (2012) states that different terms are used for this subdiscipline of sociology. In the UK and USA, it is generally referred to as “medical sociology,” although in Australia, the term “sociology of health” is preferred. In the UK, the requisite sub-branch of the British Sociological Association (BSA) is called the Medical Sociology Study Group (which has an annual Medical Sociology Conference). Both The Australian Sociological Association (TASA) and the International Sociological Association (ISA) have a sub-branch called the Health Sociology. While the difference in terminology might seem purely semantic, there has been debate for decades about what the term means for research and scholarship within the discipline. For example, Straus (1957) and Strong (1979) presented arguments about “medical sociology” potentially being a handmaiden to medicine, a subdiscipline of medicine, undertaking research “within” medicine and therefore creating difficulties to undertake research from outside medicine, looking in. This is the classic sociology of/in debate – are we undertaking sociological research in medicine (potentially making critique difficult) or of medicine? This sociology in/of medicine debate has more recently been updated to explore the role of social science in public health, arguing that sociology with public health is a more useful way of thinking, as opposed to the in/of debate (Mykhalovskiy et al. 2019). To explore this debate in detail would be outside the scope of this chapter, but it is important to be aware of the debate and to critically analyze our position as sociologists in, of, or with medicine. A brief look at the Contents Pages of the medical sociology books on the author’s bookshelf reveal some similarities in terms of what is presented as “medical sociology.” Almost all textbooks cover social inequities in illness, to greater or lesser extents, with focus on describing and explaining the sociological reasons for such inequities on the basis of social class, gender, and ethnicity. Most books also cover topics on the understanding and experience of illness and as such the social processes involved in defining and experiencing illness (in terms of how/why different social groups understand and experience illness differently and also on how/why different illnesses are understood and experienced differently), using terms such as lay knowledge, lay expertise, and lay epidemiology (Bury 1982, 2001; Davison et al. 1991, 1992; Williams and Calnan 1996; Williams 2000; Williams and Popay 2001). This is dealt with in some books under the term “social construction of medical knowledge” albeit broader since these books also include how medicine and medical science have developed diagnostic criteria to define illnesses and diseases, and in some cases, population groups at risk of such illnesses. Classic examples of this is Michel Foucault’s analysis of the development of knowledge to define mental illness (Foucault 1971, 1989) and also Erving Goffman’s analysis of how a diagnosis of mental illness creates stigma for the person with the illness, through what he terms a “spoiled identity” being cast upon them by social processes (Goffman 2009; Scambler 2009). Given the sociological gaze by the authors of these books, great
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attention is also given to the impact of medical systems and knowledge on if/how/ why different social groups experience and understand health and illness and on differential access to health technologies, medicines, knowledge, and resources to stay healthy or prevent illness. Given the different audiences for the books, some books are obviously more theoretical than others, going into more detail about key theorists and theoretical debates and the history of ideas in medical sociology and how they have changed over time.
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Similarities Between Social Epidemiology and Medical Sociology
One way of trying to define a concept is by drawing linkages to other similar or related concepts. The author will draw out some similarities between medical sociology and social epidemiology, which are often seen as very distinct academic disciplines and research areas, although they share some similar foci. Epidemiologists have been in the media limelight throughout the COVID-19 pandemic, talking about epidemiological curves, reproductive numbers, projections of transmissions, diagnoses, and deaths. Some epidemiologists have also talked about the reasons why some population groups have higher COVID-19, hospitalization, vaccination, or death rates than other groups – the social reasons or determinants of COVID-19. Medical sociologists may well be having the same conversations in terms of understanding how and why some social groups (e.g., people in higher density housing who cannot socially isolate, people with multiple part-time jobs, people without jobs that provide paid sick leave, people in communities that have a communitarian culture) have different exposures to and outcomes from COVID-19 during the pandemic. Therefore, a brief discussion of social epidemiology may help readers to understand medical sociology in a more complex and nuanced way. For the research the author has undertaken in public health, it is useful to think about “public health medicine” for the purposes of this chapter, rather than the whole gamut of medicine and its sub-specialities. Khoury (1999) states that epidemiology is often seen as the “scientific core” of public health medicine although a number of authors have noted a contemporary shift in understanding which required a concomitant shift in the dominance of “pure” epidemiology. For example, Schwartz et al. (1999) argue that at the end of the last century, knowledge of health that was based on the view that risk for disease mainly lies within the individual and their personal behavior became limited, if not dangerous, for public health action. This view sees the cause of disease being located within the individual; therefore then the solution would also be located within the individual and lead to interventions based purely on individual behavior change rather than look for causes and solutions within the social environments, systems, and organizations within which individuals and groups live, work, and play (note the similarities here with the underpinning philosophy of economic rationalism and neoliberal government). Schwartz et al.
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(1999) also recognized that there needed to be an acknowledgment of the influence of interactions between individuals, and the interchange between individuals and their social environment. Thus, social epidemiology evolved as branch of epidemiology, with its focus on uncovering and statistically explaining the social determinants of health and illness. There has been a burgeoning interest in social epidemiology, which deals with the social determinants of health, as witnessed by the number of academic articles and books and the World Health Organization Commission on the Social Determinants of Health. One of the prime differences between social epidemiology and medical sociology is that the former tries to uncover and statistically explain the social determinants of illness, whereas medical sociology aims to understand if, how, why (often using qualitative methodologies), and in what contexts social processes impact health and illness. Medical sociology is a much broader discipline and engages more deeply with sociological theory, indeed a hefty proportion of medical sociology is purely theoretical and does not engage with empirical data – theorists try to make sense of the world around them and propose potential ways of thinking for empirically minded researchers to “test” in the real world. Nevertheless, the two disciplines share a common bond – they are both interested in the ways that society (through various social processes that mean some groups have different life chances and life circumstances) shapes health and illness. Social epidemiology has been defined as the “branch of epidemiology that studies the social distribution and social determinants of health” (Berkman and Kawachi 2000a, b, p. 3). This rather broad definition has been further developed by Krieger (2001, p. 697), who states that social epidemiology should focus on the “specific features of, and pathways by which, societal conditions affect health.” It has been suggested that social epidemiology, as opposed to epidemiology, which is coupled with biomedical theory (Zielhuis and Kiemeney 2001), has a focus on the social determinants and social distribution of states of health, and on how the social environment can profoundly affect health outcomes (Berkman and Kawachi 2000a, b) in relation to morbidity, mortality, disabilities, and well-being. As an example of a social epidemiological study, the author refers to the work of one of the founding sociological theorists of this field, Emile Durkheim, who demonstrated how social integration (or the lack thereof) is related to suicide (Durkheim 1951). Typically, social epidemiologists focus on understanding the relationships of what Durkheim called “social facts” (Durkheim 1982) with a variety of measures of health and illness. For example, Marmot’s Whitehall studies show a strong negative relationship between social class (reflected by grade of employment) and mortality (Marmot et al. 1991). However, Berkman and Kawachi (2000a, b) make the case for not ignoring or discounting the importance of biological theories, in addition to social theories. In making this argument, they refer to the seminal work of Graham (1963), in which he argues that in order to achieve a more comprehensive theory of disease causation there needs to be a collection of both biological and social data that are consistent with each other. The key conceptual distinction that needs to be understood between “epidemiology” and “social epidemiology” is therefore around
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the adjective “social” (be bedrock of medical sociology), if we are to then understand the related concepts of “society” and thus the “societal conditions” that affect health. When attempting to define social epidemiology at a cursory level, it is difficult to integrate the words “social” and “epidemiology” into an operational definition of a hybrid area. This was discussed in a “point-counterpoint” debate in the International Journal of Epidemiology (Macdonald 2001; Zielhuis and Kiemeney 2001), with both sides of the debate ultimately deciding that the term “social epidemiology” was difficult, although for quite different reasons. Zielhuis and Kiemeney (2001) argued that since the base discipline of epidemiology sits within the biomedical sciences, then social epidemiology is a misnomer, arguing that “social” research falls within the realm of medical sociology. Macdonald (2001) was also critical of the term “social epidemiology”, but his argument was based on what he saw as the inadequacies of current social theory for understanding and explaining “social facts.” In this way, the criticism lies with the inadequacies of theories within medical sociology to help social epidemiologists. He cited the example of the ongoing debates about how to define, conceptualize, and measure social class as the reason for his criticism of the social in social epidemiology. According to the sociology of knowledge, theories in the social world cannot be regarded as unrefutable truths – they are held up to intellectual scrutiny and are often revised, updated, and refuted as a result of changing social, economic, and political landscapes. For example, social class in the nineteenth century Europe was defined by Marx and Engels in terms of relations of production and was, therefore, measured by proxies such as occupation. However, more recently, Pierre Bourdieu (1977), has argued that European society is structured by other forms of relational capital – cultural, symbolic, and social – beyond the Marxist concept. In addition, postmodern theorists, such as Zygmunt Bauman (2000), argue that in times of neoliberalism, we are increasingly witnessing an “individualisation of society,” whereby traditional class structures are fragmented and liquified. While these, and many more, arguments about the structure of society and the (re)production of social stratification have been empirically tested, they cannot account for and explain social class over time, space, and place. They are all historically, geographically, and politically contingent. That is one of the central tenets of the social theory that underpins medical sociology – to engage with social theory is to engage with complexity. Therefore, the assertion by Macdonald that social epidemiology is problematic because social theory may not explain social facts (in all places, at all times) seems like a case of throwing the baby out with the bath water. It may just be that social epidemiology plays the part of providing some empirical, statistically significant evidence for the social determinants of health, and medical sociology then aims to understand why and in what context inequities in health and illness occur, and importantly, what we can do to ameliorate them. The author’s view is that the judicious choice of applicable relevant social theories can aid in the interpretation of medical sociological research, and ultimately allow us to understand the reasons for some of the contemporary social inequities in health and the pathways which underpin the social determinants of health.
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What Is the “Social” in Medical Sociology?
It is clear from the term medical that medical sociology focuses on all manner of things to do with health, illness, disability, diseases, and death. However, it is also important to provide a brief overview of the term sociology so that readers are then clearer on the full compound term “medical sociology.” Collyer and Williams Veazey (2021) identify four main dimensions of sociology, namely: a body of intellectual knowledge; a vocation; a profession; and an institution. In addition, Latour (2005) argues that there are two types of sociology: sociology of associations (“traditional” sociology uses preformed social theory to make sense about the world) and sociology of the social (a more flexible form of sociology that attempts to make sense of the social world via the practices/actions of the people and things involved in our observations of them without using preformed social theory, what Latour glowingly calls “slow-ciology”). There continues to be heated debate between sociologists on exactly “what” sociology is or does, which is entirely understandable given the vast array of theoretical, epistemological, and methodological diversity within sociology. Various definitions of sociology abound. Over 100 years ago, Charles Ellwood (1907, p. 300) provided an analysis of the most common definitions of sociology, “a science which treats of social evils and their remedies. . . the science of society or of social phenomena. . . the science of the phenomena of sociability. . . the science of human institutions . . . [and] science of the order or organization of society.” After reviewing these various definitions, Ellwood developed his own working definition, “sociology is the science of the organization and evolution of society” (p. 304). While this broad-ranging definition may seem rather imprecise, Latour’s (2005, p. 160) more recent definition of sociology as “the science of living together” is not necessarily more precise. The difficulties in providing a neat and tidy definition of sociology are explained in the following quote: “it has been a feature of sociological thought throughout its history that there has never been anything other than a fragile consensus about what the appropriate subject matter of sociology is, how its products should be evaluated, what constitutes sociological theorising” (Jones 1983, p. 196). Indeed, a more recent examination of the future of sociology also paints a picture akin to a postmodern artwork by Jackson Pollock (i.e., the meaning is very much in the eye of the viewer): “Today’s sociology is better explained by its future than by its past. It constructs and invents itself, transforming itself constantly, rather than being composed of schools whose existence would extend over several generations. It is already constituted as a set of questions and sensibilities, more widespread across the planet than any other previous form of social thought” (Touraine 2007, p. 192). Throughout its history, sociology has set its sights on understanding “social problems” at different levels of abstraction: structuralist and functionalist sociologists argue that human actions and existence are largely or wholly patterned by “external forces” such as institutions of government, social systems, social norms, or socially constructed forms of knowledge and hence power; sociologists focusing on human-to-human social interaction (e.g., micro-sociology, symbolic interactionism) argue that human actions are impacted by their everyday interactions with other
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humans rather than broader socio-structural or cultural systems. To muddy the waters even more, different sociologists argue that the focus of sociological endeavor should be on “social practices” (Schatzki 2002), which occur in everyday life. Schatzki (2002) argues that sociology should focus on what he calls “the site of the social,” which is the place that social life occurs, where human coexistence takes place, and hence where sociology should focus its attention. He argues that the social site is made up of orders (arrangements of entities, people, artifacts, and things) and practices (the organized activities around the orders), and that sociology’s focus on both the orders and social practices can help us to understand “the nature of social existence, what it consists in, and the character of its transformation” (p. xi). While these long and ongoing debates are essential within sociology, readers of this chapter do not need to dwell too much on them. The one thing that holds all of these differing arguments together is that sociology focuses on the “social.” This is not the place to undertake a linguistic and philosophical investigation of the term “social,” but to outline its basic meaning in sociology and its implications for a medical sociology. The most basic definitions of “social” suggest that it involves communication or interaction (Luhmann 1995; Habermas 2001) and that it is not a “natural” or “given” state (Fuller 2006), which thus makes it amenable to change through policy and practice. Ellwood (1907, p. 308) defined “social” as “a comprehensive term including the economic, political, moral, religious, educational, and other phenomena arising from the interactions of individuals.” The Collins English Dictionary defines social as “having to do with human beings living together in groups,” which infers interaction and communication in order to be social, although not necessarily “sociable” (i.e., people can be engaged in social interaction, which is not necessarily sociable). However, we do not focus on the moral attributes of social when it is used as a verb (readers interested in this are advised to read the works of Norbert Elias (2000), who explores notions of “civility” and the civilizing process). Durkheim (1982), in attempting to provide a scientific basis for sociology, defined what he called “social facts.” Without this definition, he argued there could be no academic basis for sociology. His definition is that “a social fact is any way of acting, whether fixed or not, capable of exerting over the individual an external constraint . . . which is general over the whole of society whilst having an existence of its own, independent of its individual manifestations” (Durkheim 1982, p. 102). Others have argued that the social is indirectly defined as an external entity outside people (Herrmann 2005), and that society and community is more than just a conglomerate of individuals (Beck et al. 2001), with Elias (2000) suggesting that individuals and society are actually two different aspects of the same human being. One implication of such an argument for medical sociology is around multilevel or hierarchical analysis, which aims to analyze the separate influences of “individual” level and “non-individual” level variables, often at the level of areas, neighborhoods, or other ecological measures – all assuming the measurement of something other than just an aggregate of the relevant individuals. The aim here is not to critique multilevel analysis, but merely to suggest that some conceptualizations of “social” pose interesting questions for medical sociology. What all of these different definitions do is to highlight the need for what C. Wright Mills (1959)
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called a “sociological imagination,” which refers to the need to think imaginatively beyond what we can actually observe and/or measure in order to fully understand the “social.” Obviously, this may cause consternation for some medical sociologists, for whom reliability and validity of measurement is paramount. However, in the social world, it is not possible to “measure” every dimension of social life, such as love, hate, quality of life, fear, pain, passion, grief, and so on. Thus, it is essential to develop and measure conceptual proxies or indicators for these. This lies at the heart of the requirement for, and, problems inherent within quantitative medical sociology – we need ways of “measuring” these social phenomena so that better understandings and explanations can be developed of the pathways underpinning the social determinants of health. But there are philosophical and methodological issues in trying to do so from a quantitative perspective.
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Is There a Role for “Lay Theory” in Medical Sociology?
So far, this chapter has responded to and further developed the debate over the function and status of medical sociology. However, in considering theories of the social, the chapter has only considered the possibility of formal social theory – as developed by and for social scientists. This ignores the possibility of other forms of knowledge that are generated in and tested by the lay populace and makes sociologists susceptible to claims of “sociological imperialism” (Strong 1979). This section of the chapter is devoted to the possibilities of and for integrating “medical sociology” and “lay epidemiology.” Research in lay epidemiology has been instrumental in highlighting both the complex and rational theories of lay people and groups about the creation/maintenance of health and causation of illness and the socially constructed nature of health and illness, which is an important part of determining how people understand and take actions toward maintaining or achieving health and dealing with illness and healing. Perceptual differences in the cause, treatment, and on-going management of health problems are often related to factors such as social class, ethnicity, cultural heritage, and gender. All of these factors are “social” and may impact on the perceptions and experiences of, for example, chronic illness or the engagement in “risky” or health damaging behaviors. Lay knowledge orientates an individual’s behavior and provides a means of understanding that behavior in the context of their place in their world. Individuals and/or groups attach meanings to health and illness, and in some cases, this can be sufficient to create “expertise” in an area to an extent where lay experts are recognized on the basis of their experience. Popay and Williams (1996) suggest that there are three dimensions to lay expert knowledge, which are relevant for medical sociology. These are: a lay understanding of the relationship between an individual’s behavior and their life circumstances, theories about disease etiology, and the predictive power of that lay knowledge (Popay and Williams 1996). Health risks and illness causation are understood and theorized by individuals and groups through a process of living with an illness, living in an environment of health risks or
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engaging in particular behaviors, observation of others within their social networks, and discussions across these networks and within the public sphere. Other forms of evidence are used in the genesis of lay epidemiology, such as the media. A complex weighing-up of evidence then occurs, relating to a variety of lifestyle, heredity, environmental, political, economic, and social factors (Williams 2003). Different explanations are put forward to explain the causes of ill health, with laypersons not only gathering and using expert information and scientific data but also there is an emphasis on social factors as part of the causal chain of disease. Overall, the complex forms of evidence and interactions that form the basis of the development of lay epidemiology are an important consideration in understanding people’s perceptions of chronic disease, and responses to treatment and management should, in the author’s view, have a central place in medical sociology.
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Case Study On Medical Sociological Research On “Trust In Healthcare”
In order to provide examples of both medical sociological research and also how ideas percolate and morph over time, the chapter describes his long-term engagement with applying ideas from the sociology of trust to public health problems. The author’s longstanding research program on the sociology of trust and risk spans multiple medical, social, and public health services and population groups. In addition, he undertakes research on trust in broader “social systems” such as governments (and politicians), the media, and banks. In terms of the medical/public health services, the author undertakes funded studies on understanding distrust in childhood vaccinations, public and private healthcare systems, HIV prevention programs, food systems, diabetes, cancer and coronary heart disease programs, and COVID-19 testing and vaccinations. In terms of population groups, he attempts to understand the reasons for distrust and then build new models for trust-building with parents of young children, people with different chronic health conditions, patients referred to hospitals for surgery, female sex workers, etc. While some of his research covers services/systems in Australia, he has numerous international comparative studies in Canada, the UK, Sub-Saharan Africa, and Asia. The author first undertook a study explicitly on the sociology of trust in 2004–2005, based on the healthcare needs and engagement with healthcare services of Pakistani people living in northern England (see Ward and Coates 2006). Pakistani people in this locality were regarded as marginalized and materially deprived, so undertaking this study peaked his life-long interest with undertaking research on social class in order to highlight current inequities and work out strategies for reducing inequities in society. At the time (and still so, to a large extent), the majority of empirical literature on trust was quantitative, based on largescale surveys, so his qualitative study represented an innovation in the field – he wanted to understand, in depth, the context within which trust relations and trust considerations were made or broken, as opposed to simply “measuring” trust. The
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papers published from that study argued for the central importance of considering public trust when developing new or reshaped healthcare services. This study, and many of his subsequent research studies and papers, applied the sociological theory of Niklas Luhmann to argue that policymakers and practitioners need to focus on rebuilding both interpersonal and systems-based distrust in healthcare services in order to develop socially appropriate services (Meyer et al. 2008). Although Luhmann’s seems to be more well-known and cited now, at the time his work was not high profile, certainly in sociology applied to public health. The author has since developed Luhmann’s theories into a new methodology for researching interpersonal communication (Meyer et al. 2015) and extended his theory of trust by arguing for theoretical distinctions between trust and various other semantically similar concepts such as dependence (Ward et al. 2015c) and obligation (Ward et al. 2015a, b), thereby trying to conceptualize what trust “is” and “is not.” Through undertaking various empirical studies on trust since 2004, with a whole range of individuals and institutions, the author has synthesized and refined other contemporary sociological theories on trust including Anthony Giddens (Henderson et al. 2012) and Francis Fukuyama (Ward et al. 2014). The author’s expertise in empirical and theoretical research on the sociology of trust was critical to the award of research grants in Australia that specifically researched the nature and extent of trust in food systems in Australia. His empirical analysis identified population subgroups with high and low trust in food systems and the organizations in the food system with low trust. His theoretical analysis identified the difficulty for consumers to make decisions on trust due to uncertainty created by conflicting messages in the media and a critique of Giddens’ theory that distrust is the default position, since it is argued that in the context of food in Australia, consumers trust unless there is enough evidence to the contrary (Henderson et al. 2012; Ward et al. 2012). The author’s expertise gained from this study lead to a subsequent study, which aimed to develop models of trust through international comparative data collection with multiple stakeholders linked to the food system in Australia, New Zealand, and the UK. This study included policy-makers, regulators, manufacturers, and the media in order to understand how they respond to consumer distrust, as a result of food scares and he developed a model of trust building and repair that can be used by stakeholders when food scares occur (Wilson et al. 2020). In addition to studies on trust in the food system, the author continues to undertake research and publish on trust and risk in healthcare, including trust in pharmacists, GPs, and a variety of individuals and social institutions (Gidman et al. 2012). Important examples of this are a large State Government funded study on the equity of bowel cancer screening, which identified a lack of trust by Indigenous Australians and Culturally and Linguistically Diverse groups in various individuals and institutions linked to the national bowel cancer screening program, which acted as barriers to them undertaking screening, thereby potentially leading to missed cancers (Ward et al. 2015a, b). The author is currently undertaking a study, which focuses on exploring parental trust in childhood immunization programs and attempting to develop
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communication toolkits that foster more trusting relationships with healthcare providers and policymakers. This study applies and extends the sociology of trust within the context of parental trust in childhood vaccinations. The author has published papers from this study in theoretical areas of the sociology of trust (Ward et al. 2017a, b), sociology of risk (Ward et al. 2017a, b), and the sociology of stigma (Wiley et al. 2021). He has extended this research to now understand trust in COVID-19 restrictions and vaccinations in Australia (Ward et al. 2021a, b) and internationally (Indrayathi et al. 2021; Islam et al. 2021). He has also developed a sociological research agenda on the key areas of medical sociological research required during and post-pandemic (Ward 2020). Obviously, the author’s research foci span a broader terrain than solely applying, critiquing, and re-shaping the sociology of trust, but hopefully this short sojourn through this particular research path has helped to illuminate what medical sociology can look like. Hopefully, readers take a multitude of research paths using their own pastiche of methodologies and theories to plot their own personal, intellectual, and political paths.
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Conclusion and Future Directions
This chapter has emphasized the debate on medical sociology in terms of its function and utility as a “sub-discipline” of sociology and a sister to social epidemiology. In doing so, it has opened up to critical scrutiny the central issue in, and theoretical foundation of, medical sociology, which distinguishes it from other subdisciplines. The chapter then opened up the possibility of integrating lay knowledge and theory, which can help to further understand the social pathways to health and illness and respond in socially, culturally, and clinically significant ways. While the theoretical underpinnings of medical sociology may be in the formal theories contained in sociology textbooks, the author argues for the integration of lay theories in what might be called a “bricolage” (Busby et al. 1998) or “multi-knowledge conglomerate,” whereby researchers engage with and integrate a range of theories and evidence that shed light on their particular research problem, rather than purely adhering to the hegemonic “hierarchies of evidence” expounded in some academic quarters. Medical sociology may then be able to have an even more meaningful role in providing evidence to respond to the social determinants of health and create a more equitable distribution of health and illness globally. Given the inclusion of both formal and informal (or lay) theories within medical sociology, researchers can respond to major global health priorities by integrating multiple sources of evidence. Rather than assuming, in a rather colonialist sense, that existing formal theory can explain or provide an understanding of global health issues, medical sociological researchers can listen to and venerate the voices of the people and populations involved (who are often disempowered and disadvantaged). In this way, medical sociology can provide theoretical, methodological, and ethical frameworks for future research in global health.
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Cross-References
▶ Critical Public Health ▶ Health and Medical Humanities in Global Health: From the Anglocentric to the Anthropocene ▶ Medical Anthropology ▶ Social Determinants of Health and Global Public Health
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Medical Anthropology Richard Chenhall, Kate Senior, and Daniela Heil
Contents 1 2 3 4 5 6 7
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Kuru, Kinship, and Medical Anthropology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Medical Anthropology and Epidemics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Medical Anthropology and COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Paying Attention to the Social Determinants of COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Global Body: Renting a Womb in Ukraine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Anthropological Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.1 Participant Observation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2 Rapid Ethnographic Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.3 Applying Anthropology in Disease Control . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter explores the insights that medical anthropology contributes to studies of health, medicine, diseases, and the body. It describes how the traditional anthropological methods of participant observation, extended field work, and the study of kinship relations can reveal previously obscured patterns of R. Chenhall (*) Melbourne School of Population and Global Health, University of Melbourne, Melbourne, VIC, Australia e-mail: [email protected] K. Senior School of Humanities, Creative Industries and Social Sciences, College of Human and Social Futures, University of Newcastle, Newcastle, NSW, Australia e-mail: [email protected] D. Heil School of Humanities, Creative Industries and Social Sciences, University of Newcastle, Newcastle, NSW, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_4
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disease transition. The chapter also discusses the development of rapid ethnographic assessment tools, which can be used when extended periods of fieldwork are not possible. It also considers the application of medical anthropological understanding to new global concerns from the rise of new pandemics to the complex global questions surrounding surrogacy. This chapter demonstrates the significance of the insights and language of medical anthropology into the crossdisciplinary world of health research. Medical anthropology provides for an important way in which understandings of health can be enriched, supporting a deeper level of analysis that examines the multiple levels of health in society. Keywords
Medical anthropology · Epidemics · Theories of illness causation · Participant observation
1
Introduction
During the preparation of this Chapter, Senior’s husband was rushed to hospital with crippling stomach pain, fears of cancerous growths filling his imagination. Medical imaging, however, revealed that he had something metallic, and needle shaped in his bowel and the focus changed to how he may have ingested it and how it could be removed. There was some irony in this diagnosis. In Senior’s own ethnographic field work, in South East Arnhem Land in the Northern Territory of Australia, the magical insertion of foreign objects, particularly needles and nails were an important causation of illness (Senior 2003). Such illness was greatly feared as its course, without removal of the objects by a healer was fatal. This story demonstrates how illness is interpreted from two very different perspectives. In the first, pain was understood and resolved through a biomedical framework and became less worrisome once the source had been identified and a course of medical intervention planned. In the second, the pain (and the presence of foreign objects in the body) would be interpreted as being caused by sorcery and the journey to a cure would require determining why and by whom the curse had been enacted and then finding a healer with the skills to draw the objects out of the body (Senior 2003). The social and cultural influences on health and illness and how these influence people’s lived experience of ill health has been an important focus of medical anthropology and has highlighted disjuncture between biomedicine and local conceptualizations and the failure of Western medicine to attend to social cultural understanding of disease, ill-health, and suffering. This focus on detailed studies of emic (insider) beliefs regarding health and illness, particularly in small-scale non-Western societies was an important early focus of medical anthropology (Fabrega 1971). Although this work continues, the scope of medical anthropology is now far broader; from examining economic and political influences on health, which is a focus of critical medical anthropology (Farmer 2004), to the individual experience of having a body and emotions (Scheper-Hughes and Locke 1987). Some
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anthropologists have critically reflected on their own health experience through the medium of autoethnography (Diacomo 1987). Studies may be conducted in community settings that are foreign to the ethnographer, outside their own country or their own local group to studies of health institutions themselves, such as clinic, or hospital recognizing that these are cultural system worthy of exploration (Gaines and Davis Floyd 2004). Anthropologists observe interactions between medical professionals and patients in various institutional settings and urge medical professionals to consider the illness experience as an interpersonal and felt experience rather than a gaze on individual pathology (Kleinman 1988). Medical anthropologists also explore the bodily context and experiences associated with globalization, political tensions and commodification and this is explored in the third author’s (Heil) case study of surrogacy in the Ukraine. Critically, for current circumstances, medical anthropologists also study epidemics.
2
Kuru, Kinship, and Medical Anthropology
The story that inspired many prospective medical anthropologists is the story of Kuru and how detailed anthropological field work provided the understanding of the causality of a devastating disease in the highlands of Papua New Guinea (PNG) that could not be understood through medical research alone (Lindenbaum 2001). Kuru means to tremble from fever or cold in the Fore language of PNG. In 1953, a team of scientists began to investigate a strange new disease in the Fore region in Papua New Guinea. This disease caused uncontrollable shaking, paralysis, and death. The team noted that the disease appeared to occur in family groups, with a particular emphasis on women and children with the ration of women affected to men as 3:1 (Lindenbaum 2001). This observation led them to suggest a genetic cause for the disease: Kuru was determined by a single autosomal gene, which was dominant in females but recessive in males (Lindenbaum 2001, p. 365)
Further investigation however found that this could not be the case: A fatal genetic disorder could not reach the incidence Kuru then had among the South Fore without killing off the host population, unless the gene for Kuru confirmed a selective survival advantage. There was no evidence to support this notion (Lindenbaum 2001, p. 365)
Among the research team were anthropologists Lindenbaum and Glasse who used their methods to explore the disease in greater detail, through examining people’s kinship links and talking to people about their understanding of the causation and history of the disease. They found that although the Fore groups referred to a common ancestor, people could be incorporated as kin through a variety of ways. For example, a group known as Kagisa Kin was non-consanguineal relatives who exchanged food and goods and were defined by the act of sharing a meal together
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under the sun. Fore kinship, rather than being purely biological, was rather described as “webs of attachment” (Lindenbaum 2009) based on optimal bonding (i.e., alignment for strategic purposes) rather than biology. This social model of kinship disrupted the understanding of a genetic cause for Kuru. In addition to completing an extensive study of kin relations and exploring what kin meant to the Fore, the anthropologists engaged in detailed discussions of how the Fore experienced and understood Kuru. They found that the disease was a new introduction to the region and that “people could provide vivid accounts of their first encounter with the disease” (Lindenbaum 2001). The team walked the route that the Fore described as being the path that the disease first entered the community and took the opportunity to collect people’s historical accounts of the disease. The disease seemed to be consistent with a slow infectious disease (although it was not), first appearing in a village called Keiagana and gradually spreading over 20 years to villages in the Fore region (Liberski 2013). They found that the arrival of Kuru coincided with the adoption of consuming parts of dead relatives, which was a relatively new custom among the south Fore, introduced from the north. The Fore were able to name people who had participated in the consumption of dead relatives, which demonstrated the link between the disease and cannibalism. The Fore, however, attributed the disease to sorcery (Lindenbaum 2013). The sorcerer would obtain a part of the victim’s body in the form of nail clippings, hair, partially consumed food, blood, or feces. These were packed into a bundle with leaves and buried in a swamp. The sorcerer would shake the package daily causing the tremors in his victim, a characteristic of the neurogenerative aspects of the disease. The final clue in the story for researchers was that no new cases of Kuru were seen in children born after 1960, by which time the Government and Missions had suppressed the practice of consuming dead relatives. The link between cannibalism and Kuru was met with scepticism by the medical fraternity until in 1966, Gadjusek injected Chimpanzees with brain material from a Kuru victim and they began to show clinical symptoms of Kuru (Lindenbaum 2001). This break though linking the infected material to onset of the disease earned him a Nobel Prize. It, however, was not until 1976 that the cause of the disease, a protein spike, now known as a prion was identified. In 1984, Gadjusek with Klitzman and Alpman provided the final proof of the relationship with their examination of three clusters of Kuru infections, with each living individual in the cluster being able to trace back their participation in consumption feasts (Klitzman et al. 1984). Lindenbaum and Glasse used a range of anthropological methods to understand the mystery that Kuru presented to the medical world. They drew up genealogies and, importantly, explored what kinship meant to the Fore. They used their deep immersion in the community and their participant observation to engage in the everyday life of the Fore and they walked with the Fore and talked about the routes of transmission. They were able to conduct interviews about people’s understanding of the history of the disease. Using local reference points to time and history, they were able to identify when the Fore first noticed the disease among their community. Importantly, they were also able to describe the affronts to Fore society that were
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caused by the disease, including the impacts of the loss of women and the loss of social cohesion due to the fears that Kuru was caused by sorcery. Kuru as a disease caused considerably more illness due to stress, fear and loss of trust in the community.
3
Medical Anthropology and Epidemics
In the mid-twentieth century, it was considered that for many parts of the world the epidemiological profile was transitioning from pandemics and infections to degenerative diseases (McKeown 2009). In this world of the so-called “life style diseases,” anthropologists could play an important part, examining the interactions between culture and society and people’s health behaviors. It also must be remembered, however, that this changing disease profile was not a global experience. Infectious diseases, such as Tuberculosis, remained a very significant part of the disease profile of less economically developed countries. Tuberculosis is a disease of poverty, highlighting the enduring effects of social inequality on health. The global pandemic of COVID-19 has thrown every country whether rich or poor firmly back into the world of infectious diseases, as individuals deal with the current affects and prepare for future epidemics. As foremost as COVID-19 is in people’s minds, it is not the first time in the recent history that people have been surprised by emergent diseases. People learnings from anthropological engagement with diseases such as AIDS and Ebola provide them with important reference points to understand new epidemics. Singer (1994), in her study of AIDs among the urban poor in the USA, demonstrates the complex interactions of social conditions such as race, class, and poverty with behaviors such as drug taking, which lead to people becoming particularly vulnerable to AIDS. She terms this interaction a “syndemic,” which she defines as a “set of synergistic or intertwined and mutual enhancing health and social problems facing the urban poor” (Singer 1994, p. 933). As well as alerting readers to the structural foundations of the AIDS crisis, Singer demonstrates how neglecting the social and cultural aspects of the crisis and how individuals define and interpret their own risk, is counterproductive to interventions and education campaigns and carries the potential to further stigmatize groups. Consider, for example, the targeting of homosexual men as one defined subgroup at high risk of AIDS, compared with the insights provided by immersion in the community and sensitive conversations: Despite being lumped together by the homophobia of the dominant society, it is evident that men who have sex with men do not constitute one or even two distinct social groups. Rather, they comprise a broad range of individuals and include those organised into several different (in part overlapping, in part mutually exclusive) activity/identity-oriented subgroups and those who do not identify with any specific subgroup or embrace a homosexual identity (Singer 1994, p. 938).
This information, gathered through ethnographic engagement alerts readers to a complex construction of homosexuality, which interventions must be mindful of in
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order to succeed and in order to avoid further stigmatization of those people defined as “at risk.” The information that anthropologists provide how people respond to epidemics and how relationships, care-giving, and social lives are transformed have important ramifications beyond a single disease. For example, Brown and Marí Sáez (2020) observed the impacts of Ebola separations on people’s social and family lives. While these caused significant disruptions, the response also allowed for new constructions of intimacy that avoiding this highly contagious and feared disease. These findings provided an important grounding for our understanding of the impacts of social distancing as a measure to contain COVID-19. Brown and Marí Sáez’s work also alerts readers to the dangers of undertaking anthropological research in high-risk environments and the changes they were required to make in their approach: Doing field work during the epidemic blew apart many of the ways of engaging with research participants that we had previously taken for granted as fundamental to ethnographic field work, including giving and accepting hospitality and conforming to local forms of engagement and interaction. We refuse to shake people’s hands, stay overnight in people’s homes, or eat food from a shared plate. At times we were afraid. (Brown and Marí Sáez 2020, p. 11)
They comment that instead of in-depth participant observation, they were forced to resort to short interviews and periods of interaction. The richness and depth of their ethnographic study however was enhanced by their ability to make comparisons between sites and their previous experience in the region, which left them able to draw upon information from their long-term collaborators (Brown and Marí Sáez 2020, p. 12).
4
Medical Anthropology and COVID-19
The global pandemic caused by COVID-19, led to rapid understanding of the disease and the development of vaccines to prevent it, which sought to reduce the effects of the symptoms and thus reduce hospitalizations. Yet, the experience of COVID-19 has not been homogeneous, and has not been experienced in the same way across the globe. Consider the potential rapid spread of the virus with co-sleeping in cramped living quarters, poor ventilation, poor or absent hygiene and sanitation, water shortages and broken taps and the lack of capacity for householders but also institutions (including local health workers to provide soap and hand sanitizer) (Manderson and Levine 2020, p. 368)
Global rates of infection, governmental response, and support for at-risk groups have varied substantially. The impacts of COVID-19 have been critically impacted by the social and structural determinants of health. These impacts are inherently social; consider the impact of lockdowns, the decision of whether to wear a mask and vaccine hesitancy. These social and cultural aspects may be easily ignored in the face of a crisis:
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over exposure of the pathogen ends up obliterating our critical view on the most ordinary situations of everyday life which is where and how COVID-19 Happens. (Gamlin et al. 2021, p. 6)
A case study from Australia highlights the social determinants of COVID-19 in the first outbreaks of the disease. As COVID-19 entered Australia, it was a disease associated with globalization and affluence. One particular phenomenon, the relatively affordable cruise ship holiday was uniquely associated with the transmission and spread of the disease. The second wave of the disease was very different, and was not associated with travel and leisure, but instead with very particular working conditions. Of the first spikes in the disease in May 2020, two industries stand out: a meat-processing factory and a series of aged care homes. Drawing these two categories of workers together is perhaps a little difficult to countenance. These categories of workers, however, have more in common than may be first imagined and these are factors, which may make these workers particularly vulnerable to COVID-19. Both sectors rely on a casual workforce with high numbers of migrant workers. Both have been described as stigmatizing (Aged care online 2019; Marshall 2018). Because this work is often seen as too undesirable for Australian residents, these positions are increasingly taken up by a migrant work force, often on temporary long stay visas, who may have limited capacity to understand or implement workplace practices, which would protect their own health (Boseley 2020). Furthermore, people in these industries are often employed as casuals. When desperation is combined with no provision for sick leave, the decision to stay at work, when feeling unwell (and particularly with very mild symptoms) becomes much easier to understand. Some of the key commonalities and issues across these workplaces are: • • • • • •
Low status and language barriers. Heavy workloads (due to not enough people to fill roles). High stress environments. Stigma associated with work. Discrimination/racism. Blame for perpetuating the epidemic and in the case of aged care workers in hastening the deaths of vulnerable old people. • Closed, close workplaces. • Very high turnover off staff.
5
Paying Attention to the Social Determinants of COVID-19
A key issue in responding to the spikes that are now witnessing in the COVID-19 outbreak is related to the social determinants of health, “the conditions into which we are born, grow, live, work and age and the wider set of forces and systems shaping the conditions of daily,” (WHO 2020). In the USA, ethnic and racial minorities have been disproportionately affected. In a recent commentary piece, Bhali and colleagues (2020) argue that socioeconomic and environmental factors account for a larger proportion of this different impact, in addition to factors related to
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noncommunicable disease comorbidities, age, sex, and gender. Ethnic/racial minorities hold jobs that have been categorized as essential, such as retail and public transport, putting them at greater risk of exposure to COVID-19. Increased risk of exposure has been heightened by urban crowded housing schemes and public health messaging has been less effective (Bhala et al. 2020). Also, in the USA, Sullivan and Connell (2020) discuss four ways the social determinants will become worse through growing housing instability as households are unable to pay rent or make mortgage payments due to loss of income; food insecurity created by panic buying, shortages, and disrupted food-chains; social isolation caused by physical distancing regulations exacerbating loneliness and mental health issues; and prejudice and discrimination resulting from stereotyping and blaming of China for COVID-19. In Australia, Friel and Demaio (2020) have discussed the likely amplification of existing inequities as the world emerges from the initial response to COVID-19 and argue for a multisectoral response focusing on welfare, labor markets, housing, and infrastructure. However, this governmental response needs to support community initiatives. How are individuals and families supporting each through physical isolation and how can these be supported as physical distancing regulations are relaxed but the health, economic, and social impacts continue as the world enters into COVID-19 “spikes.” Some of the loudest voices being heard during the pandemic have been from the experts, the doctors, politicians, and public health epidemiologists. But what of the voices from the community, those supporting each other in new ways and others who are struggling to live, work, and age well. In order for society to move ahead in the post-COVID-19 era, it must do so in reformulated ways with the views and experiences of those who have suffered the hardest at the forefront of policy and social action. Anthropologists are well placed to attend to the views and experiences of the various communities affected by COVID-19 and to alert readers to the variation in experience at the local level. Medical anthropologists have had significant insights to offer around the impact of COVID-19 among vulnerable communities, including studies on the politics of exposure (Sargent 2022), migrants and asylum seeker experiences (Sano and Puppa 2021; Yadav and Priya 2021) within urban slums (Zamar et al. 2022), youth with mental health problems (Winter and Lavis 2022), people living in unstable housing (Collins et al. 2022), people who use drugs (Friedman et al. 2022), to name a few. Moving away from medical anthropological investigations of COVID-19, the third author, Heil, now presents an in-depth exploration of ethnographic research with surrogacy in the Ukraine. This case explores the way in which medical anthropological approaches in global health examine the ways in which the social, biological, and moral relatedness come to the fore in complex relationships between individuals’ bodies, class, and the state.
6
The Global Body: Renting a Womb in Ukraine
In Germany, surrogacy and gestational surrogacy, for money or without payment, are prohibited by law. Hence, as a response to a major increase in surrogacy services over the last two to three decades, the German law has put a particular emphasis on
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the protection of embryos since 1991 (Embryo Protection Act). A country-internal focus of this regulation has been on the application of in vitro fertilization (IVF) and, consequently, the prevention of surrogacy practices and the idea of giving birth to what appear to be other people’s children. According to the German Office of Foreign Affairs, surrogacy contracts refer to a woman declaring her readiness to undergo artificial or natural insemination or to have an embryo which is not hers, transferred to her or to carry a baby otherwise to the full term.
German law considers these kinds of practices unethical and, therefore, treats them as void. Under German law, the woman who commissions a child in such a way (understood to be “the commissioning mother”) is not considered the mother of the child; rather, this applies to the surrogate mother, also known as the person who gave birth to the child. What this means is that the recognition of a commissioning mother as the legal mother would as a rule lead to an outcome, which is incompatible with essential principles of German law insofar as the case is situated within Germany. For this reason, German authorities are unable to recognize the maternity of a commissioning mother even if a birth certificate issued in another country names her as the biological mother; and neither is the husband of the commissioning mother able to claim paternity based on his marriage, because he is not married to the surrogate. As the German law does not consider children born by surrogates as related to the commissioning parents in the legal sense, they do not attain German citizenship through birth either. Accordingly, foreign embassies based in other non-EU European countries are unable to issue the children with German passports. And traveling with a new-born from their home country, also known as the country in which they are born, to Germany is not permissible without the relevant identification papers either. The prohibition connotations as mentioned above have stopped many prospective parents unable to conceive to pursue the surrogacy route. Nevertheless, a transnational surrogacy market has developed in Europe over the last two decades which, to date, has enabled approximately 36,893 German couples to fulfill their dream of “having their own child.” Because of the prohibited meanings and understandings of surrogacy in Germany, German couples unable to conceive naturally have started to employ transnational commercial surrogacy agencies and their brokers working with, and some of them situated in, Eastern Europe. Since the mid- to late-1990s in particular, Eastern Europe has often become a last bastion of hope for couples from Germany as well as other Western European countries that want to have children but are unable to do so the natural way. The success rate in regard to those services has resulted in a dramatic increase as far as the usage of transnational commercial surrogacy services by German couples is concerned. Ukraine is one of the Eastern European countries participating in this. Particular reasons for this are that extra-corporal insemination services and surrogacy are cheaper there than in many other European countries and that, in Ukraine, those services are considered legal as well.
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The couple Heil refers to in the following comprises Carmen, who is now 35 years of age, and her husband Thomas, who is 37 years old. Thomas is a university professor. Carmen is a trained schoolteacher. She does not have a fulltime job but works as “a primary school teacher on call.” That is, she replaces other teachers when they are sick or on maternity leave. Carmen and Thomas are well-off; they drive two cars, expect that they will have paid off the mortgage of their house within the next 4 years, and are considering buying and moving into a much bigger house as soon as this will have happened. As two of their friends, independently from each other, state “a happy middle-class example” and, “They did not have to think about financial concerns when considering surrogacy and its hefty fees.” Carmen and Thomas’s daughter Jessica was born in Kyiv, Ukraine, in 2007. Carmen is Jessica’s biological mother and Thomas is Jessica’s biological father. Both of them are German citizens. Jessica has one older sibling, a sister called Paula, who was born in 2005. When Paula was born the natural way, Carmen’s placenta and uterus would not separate during the after-birth; while the new-born child was fine and well, Carmen’s life was near death. The afterbirth complications turned into an emergency operation requiring another two surgeons, a second anesthesiologist and almost 5 liters of blood from the nearby blood bank. Carmen was unconscious when the emergency operation started, and, as one of the surgeons stated after the operation in which they were unable to save Carmen’s uterus, she had been “close to bleeding to death.” Hence, on an important day in her life, Carmen gave birth to her first child and, within moments, lost the ability to have a second child. However, this tragic experience would not stop Carmen from having another child – biologically her and her husband’s own. Jessica is Paula’s biological sister, and Carmen and Thomas’ biological daughter. Jessica was born in Kyiv, Ukraine in 2007, with the help of a gestational Ukrainian carrier. How did Carmen and Thomas achieve this? Soon after Paula’s birth, Carmen and Thomas’s marriage was “on the rocks.” As Carmen puts it, I had lost the idea of believing in myself; I was no longer happy, and did no longer see a core purpose in life. I always wanted to have two children. My sister and I. . . we were two when we grew up. We have never been close, and we continue to have problems to the present day. However, I always wanted to know, and somehow needed to know, that I was able to have two children who are biological siblings, and that those two siblings can and do respect each other, love each other, care for each other, play with each other, and . . . even though not necessarily all the time, but most of the time . . . get on with both of their parents as well.
While this statement covers a wealth of meanings – Carmen’s life story covers the last 45 years, is complex, and has not been very easy at all, the point Heil wants to draw on here is the vital importance for Carmen to prove to herself that she is not only able to have two children who are biologically her own; but that she is also able to have two children who get on with both their parents as well as each other. The point relates to Carmen’s own childhood and upbringing, the problems she has experienced to the present day with one of her parents, and the importance for her to demonstrate to both, her parents and herself, “that she is better at this than they have been.” When Carmen was asked whether she is more interested in herself than the wellbeing and happiness of her children, tears appear in her eyes. And she adds, “It’s
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complicated; it has always been part of my life.” An obvious factor resulting from the conversation is that she is unable to separate her own experiences and upbringing from the story relating to her children. And Thomas, Carmen’s husband, adds at this point: As soon as Paula and Carmen returned home from hospital, organizing child number two became the number one priority in our (family) life.
They searched the internet for reliable Ukrainian infertility clinics that offered gestational surrogacy, ensuring that surrogates were chosen who already had their own children and whose primary interest in becoming a surrogate was financial gain; they had familiarized themselves with the “ins” and “outs” of the German law in that regard; and they started working with a lawyer in Germany who they consider “marvelous and so helpful” to the present day, as far as the suggestions on how to overcome the legal obstacles and barriers of entering Germany with an under 1-week old baby born in a non-EU country, would be concerned. Two years later, Carmen and Thomas managed to welcome their second biological daughter in Kyiv and, within 5 days after the birth, they took Jessica home to Germany. Thomas used to work with someone who migrated from Ukraine to Germany. At the time, prior to Russia starting the war in Ukraine (24 February 2022), the person’s parents still lived in Ukraine and were the ones who, together with their daughter who visited from Germany, looked after the newborn while Carmen and Thomas returned to Germany for 2 days to organize their newborn daughter’s entry to Germany. The official story and explanation that enabled Carmen and Thomas to bring their daughter home goes like this: They were on holidays in Kyiv. At the time, Carmen was pregnant with Jessica. While the couple was on holidays, Carmen experienced complications with her pregnancy and, hence, the birth of her second daughter was introduced in a private hospital in Kyiv. The analysis is not about exploring the boundaries that may (or may not) be explored between the different stories; rather, a particular emphasis here is what Pashigian (2009) refers to as “the womb as site of relatedness-making” – which means the surrogate’s womb is a space that brings difference between social, biological, and moral relatedness to the fore. It extends the role of mother, and what it means becoming a mother, and being a mother. And how the surrogate’s rented womb, – here, the author brings the commissioning parents’ perspective to the fore – and the surrogate’s body participate within this discourse. Through counseling and conversation, medical personnel encourage surrogates to see themselves as gestation-providers whose only link to the fetus is the renting of a womb imagined as an empty and otherwise unproductive space. This formulation of surrogacy and pregnancy makes possible the commodification of the womb and the disaggregation of the work of mothering into distinct affective and biological components – necessary conditions for the transnational distribution of this work. The analogy that a majority of surrogates use and continue to work with is that what they are doing is that their womb is like a spare room in a home, where someone else’s baby will stay and grow for a while. The baby is a guest – rather
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separable from, than part of the woman’s whole body, and thus distinct from the surrogate as a subject. The relationship each woman develops with her womb and the fetus it supports is, thus, (at least partially) constructed from conceptions of the body and self-promoted by medical staff, and linked to the ways in which Western medical culture makes sense of kinship through artificial reproductive technologies. Notions of kinship deriving from these technologies are actively taught to the surrogates at the clinic to a degree that surrogate mothers eventually seem to accept these notions, at least as far as they allow them to go through with surrogacy. At the same time, however, a number of surrogates describe expectations of future responsibility on the part of the client to the surrogate and her family that lie outside the surrogate’s fee and correspond to local notions of familial duty, implying that their acceptance of the logic put forward by medical staff is far from complete, and their understanding of the mothering work as disaggregated may not be absolute. There are two different meanings that receive particular attention when reflecting upon and examining this ethnographic example. While the ethnographic example illustrates the difference between “having a child” and “giving birth to a child,” a question that comes to the fore, almost at the same time, is “Why do people want an own child?” At the same time, this case study has demonstrated a rich ground for an analysis of what it means to be human, to be happy, to desire and feeling complete, and to live as gendered beings in contemporary affluent, middle-class societies. And yet those involved in these processes – biological parents, children, grandparents, brokers, gynecologists in Germany, medical practitioners and nurses in Ukrainian hospitals, the gestational carrier, as well as lawyers in both Germany and Ukraine – have added in multiple ways to retain forms of ownership, and include different ideas of biologically determined “own-ness.” Further, there is the inherent point that the child “really” belongs to the biological parents, not only in a biological but a social sense as well. And it thus satisfies the desire that supposedly led to the original engagement with the technologies – that is, the reproductive technology of in vitro fertilization and the socioeconomic, legal, and structural options of using a surrogate based in Ukraine. The above example demonstrates the ways in which assisted reproductive technologies have extended the medical anthropological realm and its interdisciplinary focus over the last four decades. Further, it adds to challenging the ways in which the tropes of biological/social, economic/cultural, political/technical, local/global, and past/present determinants are required to be rearticulated for, and in, the future.
7
Anthropological Methods
7.1
Participant Observation
Participant observation is the key method utilized by anthropologists in the field. Participant observation involves learning by doing and being immersed in the everyday life of a community. The perspective obtained through participant observation is an emic (insider) one. Unlike other disciplines, the anthropologist is the central tool for their research, which is conducted in naturalistic settings. The
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positionality and potential bias of the anthropologist is acknowledged and discussed; for example, a young female anthropologist working in societies where there is division between gender roles may have far greater access to the lives of women than men. Participant observation requires a substantial investment of time, often anthropologists are required to learn a local language and will gradually build up their knowledge of the context of the environment in which they are working. They may supplement their participant observation with methods, such as ethnographic interviewing or life histories and may use kinship diagrams to understand how people are related in the community. Increasingly anthropologists are called upon to make more rapid assessments of a community, and this is particularly the case in health research, where there might be an urgent need for understanding (Grace and Chenhall 2006). The use of rapid ethnographic approaches is discussed later in this chapter.
7.2
Rapid Ethnographic Methods
Although the social, cultural and political context in which people experience illness and seek to recover us a small section of a more complicated puzzle, interventions that overlook these complexities risk failure as the structures around it crumble (Manderson 1998, p. 1028)
In the above quote, Manderson (1998) highlights the important contributions of medical anthropology to understand the relationships between human, society, and health. Although population statistics are important in understanding large trends, these numbers are inhabited by individuals living within communities. These communities are made up by individuals with varying life experiences, access to power and privilege, and different life histories. Understanding these perspectives are an important part in understanding health as a social justice issue, where good quality health service is more than just ensuring ease of access for all people, but one which understands the structure of causes of ill-health embedded in relations of power and inequity. Traditional anthropological research is built upon participant observation and deep engagement with the community, which usually requires a significant investment of time. Such investments have greatly enhanced readers’ understanding of diseases and the way that people understand and respond to them as readers have seen in the examples of Kuru, AIDs, and Ebola which are described in this chapter. This method also enables readers to the relationships between individuals, the State, and the geo-politics of such issues as surrogacy. The urgency caused by many medical crises means that anthropologists are often forced to reorient their measures to very tight time frames. In part, this can be countered through the use of rapid ethnographic measures, although as has been seen, anthropological knowledge of the context of the crisis, which is often built over extended time frames, is invaluable to understanding. Another, possibly more difficult barrier, is caused by the lack of understanding and respect given to anthropological methods within medical sciences. As Stellmach et al. (2018) point out, successful responses to public health emergencies requires
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collaboration between specialists, clinicians, epidemiologists, and social scientists. Hindering this collaboration are different professional understandings: Different professions approach the same subject with different expectations, ethical codes, methodologies and vocabulary (Stellmach et al. 2018, p. 1).
7.3
Applying Anthropology in Disease Control
As the chapter has shown, anthropological methods, based on long-term immersion and deep knowledge of a community can provide vital information about disease causality and transmission and assist in developing appropriate interventions. The problem is that there are very few anthropologists who are available to undertake this type of work and that the time frames associated with disease outbreaks do not usually allow for the type of work that anthropologists usually undertake. Rapid ethnographic approaches were developed in the early 1980s to undertake assessments within a far shorter time frame of usually 4–6 weeks (Manderson and Aaby 1992; Grace and Chenhall 2006; see also Vindrola-Padros and Vindrola-Padros 2018). At their core, this approach retains the standard anthropological tools of in-depth interviewing and observation but may also include a range of other methods such as focus groups, free listing, pile sorting, kinship diagrams, life histories, and diaries. These approaches are guided by the development of guidelines protocols, such as the RAPICE (Palinkas and Zatzick 2019) protocol with the recognition that trained anthropologists may not be available to collect the information. As Manderson (2010) points out, these rapid approaches should not replace traditional anthropological methods, and that there will inevitably be a loss of important contextual information and a tendency of oversimplify behavior. In 2008, Senior and Chenhall (2008) published results of an in-depth anthropological engagement with young Indigenous people in a remote Australian community, where they worked with young people and explored their aspirations toward and experience of relationships, including how young women negotiated and managed their relationships with young men and their perceptions that early pregnancy would be an inevitable part of their lives. This work provided insights into the very high rates of sexually transmitted infections and teenage pregnancies in such communities. As a result of this study, the authors were asked by the health department to replicate this research in several other communities. Their problem was that they could not conduct in-depth ethnographic studies in six different communities, and they needed to find a more rapid way to obtain detailed, sensitive, and contextual information about young people’s lives and sexual decision making. In this case, they used a scenario-driven body mapping technique (Chenhall et al. 2013), where they developed a series of vignettes based on their previous research and asked young people to respond and interact with these stories by working together on a lifesized human outline. The participants took their character through the story and discussed what was happening to their character and how they felt about this at every stage. This was rapid, but ethnographically informed research, which provided deep
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insights into the way young people conceptualized sexual risk and the barriers they experienced accessing health services. The hypothetical nature of the story telling also protected young people from disclosing sensitive information about themselves (Senior et al. 2014).
8
Conclusions and Future Directions
This chapter has explored the insights that medical anthropology contributes to studies of health, medicine, diseases, and the body. It has demonstrated how the traditional anthropological methods of participant observation, extended field work, and the study of kinship relations can reveal previously obscured patterns of disease transition. It has also discussed the development of rapid ethnographic assessment tools, which can be used when extended periods of fieldwork are not possible. Health is presented as a social construct, which is explicit in individuals’ understanding of the social determinants of health, and the chapter has examined the contribution that medical anthropology brings to this. It has shown the application of medical anthropological understanding to new global concerns from the rise of new pandemics to the complex global questions surrounding surrogacy. Throughout this chapter, it has shown that the integration of the insights and language of medical anthropology into the cross-disciplinary world of health research is an important way in which understandings can be enriched and which supports a deeper level of analysis that examines the multiple levels of health in society. Throughout this chapter, it has demonstrated that medical anthropological insights can offer nuanced and perhaps previously hidden perspectives relating to health behaviors and understanding of health and illness. These perspectives will continue to provide valuable information as we grapple with emerging disease threats and consider their interactions with the social world.
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Sano G, Puppa FD (2021) Unveiling informality through im/mobility. Conceptual analysis of Asylum seekers and refugees at the margins of the reception system in Italy. J Mod Ital Stud 26(5):528–551 Sargent A (2022) Diminishing constructions: the work of exposure in pandemic times. In: Hewamanne S, Yadav S (eds) The political economy of post-COVID life and work in the global south: pandemic and Precarity, International political economy series. Palgrave Macmillan, Cham Scheper- Hughes N, Locke MM (1987) The mindful body: a prolegomenon to future work in medical anthropology. Med Anthropol Q 1(1):6–41 Senior K (2003) A Gudbala Laif? Health and wellbeing in a remote aboriginal community- what are the problems and where lies responsibility? Unpublished PhD thesis, The Australian National University Senior K, Chenhall R (2008) Walkin’ about at night: the background to teenage pregnancy in a remote aboriginal community. J Youth Stud 11(3):269–281 Singer M (1994) AIDS and the health crisis of the U.S urban poor; the perspective of critical medical anthropology. Soc Sci Med 39(7):931–948 Stellmach D, Beshar I, Bedford J, du Cros P, Stringer B (2018) Anthropology in public health emergencies: what is anthropology good for? BMJ Glob Health 3:1–6 Sullivan D, Connell E (2020) Why Covid-19 could make social determinants of health even worse. Advisory Board Daily Briefing, March 25. https://www.advisory.com/daily-briefing/2020/03/ 25/social-determinants. Last accessed 12 May 2020 Vindrola-Padros C, Vindrola-Padros B (2018) Quick and dirty? A systematic review of the use of rapid ethnographies in healthcare organisation and delivery. BMJ Qual Saf 27:321–330 WHO (2020) Social determinants of health. World Health Organization. https://www.who.int/ social_determinants/en/. Last accessed 12 May 2020 Winter R, Lavis A (2022) The impact of COVID-19 on young people’s mental health in the UK: key insights from social media using online ethnography. Int J Environ Res Public Health 19(1):352 Yadav S, Priya KR (2021) Migrant workers and COVID-19: listening to the unheard voices of invisible India. J Anthropol Surv India 70(1):62–71 Zamar S, Hossain F, Matin I (2022) Ethnography of community governance: a case of COVID 19 response of an urban slum in Bangladesh. Community Development Journal, bcac006: 1–18
Social Work Neil Hall
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Antecedent Knowledge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Indigenous and Global Knowledge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Other Areas of Focus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter discusses the role of the social work profession in contributing to global public health. Drawing on principles of human rights and social justice, social workers act to minimize distress, promote health and well-being, and actively work to redress inequities that contribute to poor health outcomes around the world. The chapter identifies antecedent knowledges and approaches including Indigenous knowledges, critical antidiscriminatory practice, intersectionality, strengths-based practice, gender and culturally responsive practice, the social determinants of health, and situational approach to suicide prevention. With these knowledge bases, the chapter then explores some key focus areas in social work such as Indigenous communities, disadvantaged/marginalized communities, mental health and suicide prevention, pandemics, the environment, and politics. Following on from these focus areas, the chapter outlines a range of practice approaches at individual, group, community, research, and policy/political levels that enables the profession to act on global issues. It concludes with a debate about the parallels, challenges, and apparent (but surmountable) contradictions between social work and global public health.
N. Hall (*) School of Social Sciences, Western Sydney University, Parramatta, NSW, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_6
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Keywords
Social work · Well-being · Health inequity · Marginalized groups · Social justice · Community · Critical social work · Social determinants of health
1
Introduction
Social work is a diverse profession. Put ten social workers in one room and ask them what they do; there might well be ten different answers. They can work in government agencies, and not-for-profit organizations, and have an emerging presence in private practice. The range of agencies incorporates hospitals, mental health, suicide prevention, alcohol and other drugs, child protection, out-of-home care, disability, family support, domestic violence, sexual assault, immigration and settlement, asylum seekers, youth work, women’s services, men’s services, sex/gender diversity, schools, counseling, aged care, sport and leisure, arts and music, neighborhood centers, community development, homelessness, unemployment, research and policy, and peak advocacy bodies. This list is not exhaustive by any means but does give a clear scope of where social workers may have spheres of positive influence. A large proportion of qualified social workers do end up practicing in health agencies, and while their role might be primarily clinical (for example, in a hospital ward), the fact that they are in a health setting gives rise to considering the broader framework that could apply. Social work is an interdisciplinary profession. In theory, research, and practice, social workers draw from sociology, psychology, Indigenous studies, and political economy, as well as specific social work theories. Where sociology contributes to understanding the operation of power and social structures, psychology contributes to understanding the functioning of the individual within society. The intersection of these two disciplines provides a venue for connecting broader social factors to people’s experience of quality of life, which incorporates an analysis of the social determinants of health. Indigenous studies embrace a broader concept of what knowledge is and redress the impact of colonization on the development of theory and practice within the social work profession. The inclusion of a political economy framework acknowledges that social work is located within political environments, and that social work itself is political. Social work is a registered profession in most English-speaking countries around the world (although, in Australia, membership of the professional association is voluntary). Registration provides accountability to a government authority for practitioners with a recognized university qualification in social work. McCurdy, Sreekumar, and Mendes (2020, p. 19) indicate that the arguments for professional registration relate to improving the professional standing of social work and protecting service users from “harm that may arise through poor practice by qualified social workers or in many cases by unqualified persons calling themselves social workers.” That there are a relatively small number of such cases is a relief and is due largely to the interdisciplinary, ethics-based, critically reflexive content of social work curricula.
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In its interdisciplinarity, social work is a profession acknowledged globally as one that is primarily concerned with people and their surrounding environment. In 2014, the International Federation of Social Workers (IFSW) and International Association of School of Social Work (IASSW) jointly endorsed the following description of global social work: Social Work is a practice-based profession and an academic discipline that promotes social change and development, social cohesion, and the empowerment and liberation of people. Principles of social justice, human rights, collective responsibility and respect for diversities are central to social work. Underpinned by theories of social work, social sciences, humanities and indigenous knowledges, social work engages people and structures to address life challenges and enhance wellbeing.
Various national social work professional bodies around the world have similarly endorsed this perspective and draw attention to the values and ethical principles that underlie practice. For example, the Australian Association of Social Workers (AASW 2020) emphasizes that social work is informed by a commitment to human rights and social justice (including subscribing to the principles and aspirations of the United Nations Universal Declaration of Human Rights), and respect for the inherent dignity of humanity. They espouse approaches to working with people that enhance individual and collective well-being, promote social development, resolve personal and interpersonal problems, improve and facilitate engagement with the broader society, address systemic barriers to full recognition and participation, and protect the vulnerable from oppression and abuse. Bolzan (2007, p. 56) summarizes the multiple facets of a social work definition by identifying that Social workers work with, or on behalf of, individuals, groups and communities to identify, minimise, and ultimately remove disadvantage associated with social arrangements, both formal and informal.
This definition underlines that social work is a practical profession that engages with people and social structures at multiple levels. Sometimes the language changes in relation to the labels, but social workers have opportunity to take action at micro, meso-, and macro levels. Social workers have often been referred to as the connectors in a hub, or as the oil that makes the gears of an engine turn smoothly. Whether this oversimplification is accurate or not, their unique position in the human services sector means that they can function in many settings and approaches, which can also overlap, as shown in Table 1. The operation of these methods will make more sense later in the chapter when discussing case studies and key areas of focus, but what follows here is a brief explanation of each of the practice methods. • Individual and Family Work O’Connor, Wilson, Setterlund, and Hughes (2008) point to working with individuals and families as a way of collaborative problem-solving/problem-posing at a more therapeutic level. Case management is an approach that supports people
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Table 1 Social work practice methods Level Alternative labels
Micro Tertiary intervention Direct practice Clinical/treatment
Practice methods
Individuals Case work Case management Counseling and therapy Group work
•
•
•
•
•
MesoSecondary intervention Intermediate practice Early intervention Community work Community development Interagency networking Research and evaluation
Macro Primary intervention Indirect practice Prevention Social policy Social action Population approaches
Leadership and management
(often the marginalized) whose issues require additional support and oversight when receiving assistance from multiple social work agencies. Group Work Working with people in group settings has a long tradition in social work, generally with four purposes of mutual aid, therapeutic outcomes, psychoeducation, and social action. Different types of groups are appropriate for different participant needs, settings, and goals but have common values around reciprocity and empowerment. Community Work and Development Community work is a method of working more broadly to identify local community needs and strategies for addressing those needs. It is generally not considered to be a micro intervention. Collaboration, participation, and collective action in both process and outcome are central principles marking community work as a meso-social work approach. Social Work Research O’Connor, Wilson, and Setterlund (1995) identify three purposes in social work research: needs assessment, evaluation, and understanding structural causes of social issues. Participation and empowerment, and commitment to lived experience, characterize the uniqueness of social work research, along with generating new knowledge to achieve positive social change. Social Policy and Social Action The most outward-looking social work approach, analysis and development of good public and health policy, and the lobbying and advocacy strategies used to achieve them illustrate its importance as a macro intervention. Leadership It is becoming common to see qualified social workers stepping into roles of health service management, and organizational and civic leadership, arguably due to their interpersonal skills, participatory approaches and ability to locate human and organizational issues within a larger framework of access and equity, procedural fairness, and human rights and social justice.
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These definitions and principles provide a solid grounding for addressing issues related to global public health, especially as social workplaces’ priority on wellbeing and quality of life, minimizing suffering and disadvantage, and giving preference to working with marginalized people, groups, and communities. There are, however, a number of challenges facing both the theorization of social work and its application to practice. For example, there exist critical voices that argue that social work has developed as a “white” profession. Second, most of the definitions are limited to the Anthropocene and do not name the importance of the biodiverse global environment. Third, as Howe (2013, p. 399) points out, social work takes place within a social and political context so that “the broader purposes of social work are determined by prevailing political values.” Drakeford (2013, p. 19) agrees that social work stands upon some of the most ideologically contested terrain of modern politics, and that “claims by governments, organisations or individuals that social work is ‘above’ or ‘beyond’ politics disguise a set of assumptions which are themselves ideological.” Many of the definitions of social work are written in such a way to be inclusive of a broad political spectrum, which is useful in providing flexibility for the many roles undertaken by social workers in a vast array of government and nongovernment practice settings. However, it is a reasonable criticism that political inclusivity is insufficient for properly engaging with issues of inequity that are core to global public health. Baum (2016) contends that health outcomes are complex and influencing factors include genetics, environment, social situation, and political-economic milieu. Liamputtong (2023) identifies that health is a social and cultural construct and discusses the importance of seeing public health within that broader sociocultural context. Liamputtong advocates that health inequality, inequity, and social justice are fundamental to taking action in the global public health sphere. Campbell (2020) similarly argues that holistic frameworks in public health, especially in marginalized settings such as mental health, provide opportunity for addressing the impact of power inequalities on health. These multiple layers that comprise an understanding of global public health clearly align with a critical approach to social work. The rest of this chapter discusses these various areas of parallel ideation and practice between social work and global public health.
2
Antecedent Knowledge
Critical social work is foundational to the profession and incorporates three aspects: first, the use of critical reflection, which is directed both inwardly for the individual social worker in how to maintain good daily practice (e.g., self-checking on motives and ethics, staying true to social work purposes and theories), and outwardly by critically reflecting on the broader social structures that impact on the lives of individuals, families, groups, communities, and populations. Second, the natural conclusion of this reflection is to incorporate critical theories to understand and intervene. Allan (2009) emphasizes the importance of theories that analyze the
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power structures in society that result in unequal power and oppression for marginalized groups, rather than pointing to an individual pathology for people’s problems. Examples of theories of this ilk are Marxism, Feminism, Intersectionality, and Antidiscriminatory Approaches. Third, critical reflection and critical theories must be accompanied by critical action. Martin (2009) insists that social work could only be built on collective action with strong links between theory, day-to-day practices of social workers, and politics. Payne, Adams, and Dominelli (2009, p. 3) further explain that action inevitably informs further thinking, meaning that critical social work practice is a reflexive cycle, in which social workers ‘put themselves in the picture’ by thinking and acting with the people they are serving, so that their understandings and actions inevitably are changed by their experiences with others. As part of the same process, they influence and change others and their social worlds.
How this framework can be an approach for operating within the global public health sphere is multidimensional. Bywaters (2009) identifies that a challenge for social work lies in redressing health inequalities, and articulated four principles to convince the profession to engage more actively with global social, economic, environmental, and political issues. • That health inequalities are a matter of social justice and human rights • That the causes of health inequalities are primarily social • That poverty and poor health are common characteristics of social work service users • That, therefore, health inequalities are a vital issue for social workers in all settings At the same time, the Commission on Social Determinants of Health (CSDH 2008) uses the term inequalities to mean measurable differences in health characteristics and stated that “health inequities . . . are caused by the unequal distribution of power, income, goods and services globally and nationally.” This logic path from both disciplines provides a very effective argument for convincing social workers that public health is their business, and an equally influential proposition for public health workers to function in partnership with social workers. Ruth, Sisco, Wyyatt, Bethke, Bachman, and Piper (2008, p. 72) track the history of social workers’ involvement in public health issues, identifying that they “share a social justice mission to improve, defend, and enhance well-being,” and adopted a definition of Public Health Social Work as “social work practice that uses an epidemiologic approach to preventing, addressing, and solving social health problems.” Ruth et al. (2008) and Van Pelt (2009) identify that, in the USA at least, there has been an increase in the number of tertiary institutions offering Double Masters programs and have integrated the two fields with varying degrees of success. Van Pelt (2009) maintains that the fit is appropriate, since social workers approach their work from an
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epidemiological and a social perspective, and have the benefit of training in both prevention and intervention. The principles and ensuing benefits identified above do not just apply in the local social work setting but also globally, as health inequalities, poverty, and the profiles of social work services users are comparable transnationally. Wilkinson and Pickett (2009), for example, demonstrate that health and social problems are worse in countries with high levels of unequal income. The IASSW Global Agenda (2012, p. 1) commit members “to supporting, influencing and enabling structures and systems that positively address the root causes of oppression and inequality.” Pockett and Beddoe (2015, p. 2) conclude that being informed by this agenda, as well as the 2012 UN Millennium Development Goals and the 2008 Commission on Social Determinants of Health, “social work practice is now unavoidably both local and global.” Beddoe and Maidment (2014) further argue that health and well-being are core elements of social work practice and not just an optional specialization. Incorporation of the social determinants of health are significant in this regard, particularly in navigating the tension between approaches that focus on strengths or deficits. The World Health Organization (WHO) endorses a holistic view of health and wellbeing, which provides an alternative arena within which to discuss a definition that reflects more than just a medical or pathogenic model of health as the absence of disease. Wilkinson and Marmot (2003) extend this definition by identifying ten main social determinants of health as social gradient, stress, early life, social exclusion, work, unemployment, social support, addiction, food, and transport. Macdonald (2005, p. 8) elaborates by drawing on an example of hospital patients whose conditions may have causes lying in the “social, economic, cultural and personal emotional and spiritual context or environment.” This perspective understands health to be the successful interaction between individuals/communities and their surrounding environment. Macdonald (2006) emphasizes the importance of looking beyond pathological and pathogenic elements in understanding health and that despite the dominance of the traditional medical model – which focuses on diseases and problems – health should instead be understood as a positive construct, enabling interventions to focus on what enhances health. In social work literature, the parallel phrase is a strengthsbased approach and stands in contrast to a deficit approach. Working with people and communities to determine what strengths they already have, and what they could feasibly develop with support, resources, and advocacy, is an empowering process that has positive repercussions for their health and well-being.
3
Indigenous and Global Knowledge
These conclusions coalesce with the nature of social work as diverse, interdisciplinary, and empowering but equally need to be seen in the light of a critical analysis of the political milieu of a profession that is grappling with how to decolonize, indigenize, and globalize its theory and practice. Pockett and Beddoe (2015, p. 2)
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state that the interrelationship between health and social inequities “is also linked to power relationships in communities, both local, national and global.” Power constructs are at the core of colonization and therefore need to be deconstructed in embracing Indigenous and global knowledges to promote more inclusive social work in global public health. For example, Tascon and Ife (2020, p. 192) suggest that even “strengths-based” can be misconstrued though the lens of individualistic Western culture, and that happiness, harmony, deep relationships, generosity, sensitivity, creativity, humility, warmth and connectedness are also strengths, perhaps less likely to be valued in a patriarchal achievement-oriented culture. The issue is one of who defines what ‘strength’ means, and what particular strengths are valued in the practice context.
To effectively integrate Indigenous content into social work curriculum (and by logical extension public health curriculum), Zubrzycki, Green, Jones, Young, and Bessarab (2014) contend that this integration requires the creation of partnerships, and an agreement about what learning areas may and may not be taught by non-Indigenous staff. At a very basic level, social work language needs a more nuanced usage. Green and Baldry (2008) identify that content must incorporate a recognition of historical effects of colonialism and paternalistic social policies, and the importance of self-determination, which are inextricably linked to intergenerational trauma and healing. These issues are common for Indigenous people the world over and must form a core tenet of working within public health. Globally, there is other literature that offers nuanced models for moving away from a solely anglocentric understanding of public health social work, to incorporate a broader range of cultural knowledge and practices. For example, King and Koski (2020) emphasize the importance of redefining and including the “other,” whereas Borde and Hernandez (2019) indicate the crucial step of acknowledging the global south rather than relying on traditional Anglo/European colonialist frameworks. Yadav (2019) reflects on a decolonized model of social work from Nepal, developed from the ground up in partnership with Nepalese social workers and the communities with whom they work. The centralizing of local contextual knowledge and enabling a holistic cultural and spiritual understanding of health were key factors identified in this model, which can easily be generalized to other cultural groups. For Buyum et al. (2020), the series of pandemics in recent years brought into the spotlight the need to decolonize global health, especially as the world’s most marginalized groups have been more severely affected, particularly Black, Indigenous, and People of Colour (BIPOC) communities. As an example of a priority issue for Indigenous Australians, Calma (2007) stresses that addressing suicide is paramount and urges the social determinants of health as an important holistic approach to policy development. Terare and Rawsthorne (2019) translate its application to social work practice, whereby the ongoing impacts of the Stolen Generation, unemployment, housing, and legal issues – among other factors – are entwined with Indigenous ways of knowing about health and well-being. (The “Stolen Generation” is a term used to reflect the
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experience of those Indigenous Australians who were forcibly removed from their birth families as children, sanctioned by unjust government policies regarding assimilation into white society, leaving “a legacy of trauma and loss that continues to affect First Nations communities, families and individuals today” (https:// australianstogether.org.au/discover-and-learn/our-history/stolen-generations).) An example of this approach in practice is embodied in an Indigenous Suicide Prevention Project in outer Western Sydney known as “The Shed.” The following material is an excerpt from “The Shed in Mt Druitt: Addressing the Social Determinants of Male Health and Illness” (Macdonald and Welsh 2012), where social determinants of health that can accumulate over a period of encountering adverse life situations (such as adverse childhood experience, school, addiction to drugs, relationship strain, work-environment, unemployment, community life, separation, and accompanying legal issues) are addressed in an holistic culturally responsive way. The Shed is a community-based initiative for and by the local community. It engenders a sense of family, a sense of belonging, a place of listening, a place of welcome, a place for a ‘feed and a yarn’. All of these underline contribute to a place of trust and respect. It is based on the local voices and networks and has no need for advertising or media exposure. The Shed began as a response to suicide and followed a raft of conversations, research, and real respect between Western Sydney University, the Aboriginal men and the local community- a good example of a community engagement program between the major tertiary Institution of Western Sydney and a local community with the largest public housing component in Australia. The participation of the local respected Elder of over 40 years in the Mt. Druitt community, Uncle Wesley Marne, was significant in leading the way for the local men and the aboriginal community. The Shed represents a University coming to a local community to listen and learn from its narrative and from the culture and stories of some of its most fragile members and develop some strategies for grass roots change. In the beginning the Shed was, and still is, a small and rather primitive attempt to acknowledge a need especially for men and take the risks involved in allowing the locals to set the agenda. From the grass roots of the Mt. Druitt community, often pathologized by the media in a poor light, there is emerging a new pathway for fragile and wounded men and their families to take control of the processes and redefine responses at the primary level of care and healing. This approach is predicated on the greatest resource in local communities, I refer to its people. As a community model, it is messy but above all it is labor intensive. As well as being a significant conversation and response within a local network, the Shed has been part of a much wider framework and has been contributing nationally to the serious issues surrounding men’s health and the isolation that comes from social exclusion. This is reflected in the large (continued)
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number of men and especially ATSI men in the custodial systems. At its beginning, it would have been impossible to imagine that the Shed is networking and responding to so many needs even in a single day. The Shed in Mt. Druitt, Western Sydney, on a Wednesday: chaos. At least that’s what it might look like to the first-time visitor. For a man just wandering in looking for a cup of tea, however, it might be just the place. Because there are men hanging around drinking tea and coffee and there is a smell of something cooking in the background. The cook looks up from turning over a large amount of steaks, smiles, and says, “Hello, brother, grab yourself a cup of tea, lunch is up in about ten minutes”. The cook is actually the Coordinator of the Shed. In addition to men chatting to one another, there are several other one-to-one conversations going on, some with men of all ages talking with what look to be (and are) young women lawyers: “We can help you with... Would you like it if I...?” A van rolls up and two Aboriginal health workers get out: “I’ll give you a check-up just as soon as I‘ve had some of that lunch I smell”, says one of them to a man sitting on the deck. What is happening is that on Wednesdays the Shed in Mt. Druitt, seen as a safe place by men, mainly Aboriginal, is open for service providers to contact the men of this area. Before the Shed opened in 2004, such contact was often difficult: offices can be forbidding places, despite individual efforts of officers to be welcoming. The Aboriginal mental health worker, a – by now – much respected person on account of her dedication and quiet respect for the men, is always busy listening to someone under a tree. A Probation and Parole officer, whom some men have to see and whose office might be particularly forbidding, can be seen chatting with one or two men who seem strangely at ease; he comes for lunch to their place (because the Shed IS their place) every Wednesday. A young trainee social worker is explaining to me, when asked what she is being taught about men, that, “The problem with men is that they don’t talk”. I ask her to turn round. She seems puzzled, but does so. A man is talking intently to the mental health worker under a tree. “Yes, but men don’t talk,” says the trainee social worker, “we had two sessions at university on that last week”. I hope she visits the Shed more often. Panagiotaros, Hall, and Macdonald (2020) call for services to be developed that listen to stories as an effective way of improving general connectedness to reduce loneliness and isolation but also take into account the situational factors that lead a person to walk down a path of despair toward suicide. That this is a more significant issue in Indigenous communities is without question. Armstrong et al. (2017) identify that Indigenous males are three times more likely than non-Indigenous males to report recent suicidal thoughts, the disparity being greatest among men aged 30–55 years. Services like The Shed fill that gap, where stories are shared every day. The excerpt also clearly points to a variety of social work methods including individual and family work, group work and community development, and the
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influence of Indigenous people’s narrative on creating good public health policy. Notwithstanding the ground to be made up in some areas of social work education, particularly around the social determinants of health and working with men and boys, the example also opens horizons for other areas of focus for social workers in addressing global public health. There are also significant implications for working in this way across other diverse cultural groups. For example, Hall et al. (2021) argue for an appreciation of holistic cultural and spiritual dimensions of mental health literacy for the Nepalese community in Australia to enable culturally responsive health service delivery. Higgins (2020) similarly outlines the health impacts on people who have experienced forced migration or are refugees, arguing that a pathologizing medical model is insufficient for addressing their complex mental health issues. What is needed is a holistic social work model of mental health practice that acknowledges diverse constructions of health and illness, is underpinned by social justice, and is informed by lived experience. Additionally, Wells et al. (2020) emphasize the value of artsbased approaches to voice their lived experience and translate that knowledge into better health policy and practice.
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Other Areas of Focus
The Commission on Social Determinants of Health (CSDH 2008, p. 1) introduced inequalities as measurable differences in health characteristics, stating that “health inequities . . . are caused by the unequal distribution of power, income, goods and services globally and nationally.” In identifying that social workers’ regular practice settings are in hospitals, community centers, and women’s health centers, Pockett and Beddoe (2015) argue that the social work role functions within ideal parameters for addressing these issues on a direct and daily basis. Even more so, considering the unfairness that consequently arises in people’s daily lives, for example, access to health care, differences in education levels and working conditions, and the deteriorating environment diminish their opportunities for achieving a better quality of life. Other social work fields of practice align with health-influencing domains identified by Marmot (2010) such as early childhood development, education, employment, minimum income, and sustainable communities. He states that many of the policies needed for achieving better health equalities should be delivered within welfare and social provision programs, by which Pockett and Beddoe (2015, p. 3) conclude that this demonstrates “the centrality of social work practice to these endeavours.” In order to make substantial contribution to global public health, the reality of social work practice can have additional foci around poverty, lived experience, mental health and suicide prevention, pandemics, and the environment. • Poverty has always been a focus of a social worker’s mandate. Historically (and unfortunately), this has been about “charity for the poor,” but more contemporary understandings of social exclusion include not just emergency relief, but also
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redressing income security and the inequitable distribution of wealth within and between countries, and working with people who have been excluded from participation in decision-making and civic engagement processes. Action in this space has a clear flow-on effect to health and well-being. As already noted, for social work the centrality of story and advocating for the voice of those with lived experience must be a clear priority. Social workers must also be at the forefront on support and action around mental health and suicide, particularly acknowledging the social determinants of health and what many (e.g., Guntuku et al. 2021; Ashfield et al. 2017) refer to as a “situational approach to suicide prevention.” This is a framework that points to the need to move beyond crisis phonelines and address cumulative distress from detrimental life situations (e.g., unemployment, marriage breakdown and associated legal issues, loss of land, social isolation, and dispossession of culture) as being a means of long-range suicide prevention. Pandemics have obviously emerged as a key focus for social workers and all public health practitioners alike in the last few years, and the literature has increased exponentially. Hall, Thepsourinthone, and Bailey (2022), for example, make a connection between the aforementioned cumulative distress and men’s decreased mental health during COVID-19. Mehta and Briskman (2022) identify that social work accounts of COVID are differentially experienced within and between countries and highlight the expertise of social workers as complementary to the dominant reliance on health professional interventions, particularly in thematic areas of: people and the state; women, mobility, and violence; and the digital divide. Environmental issues are arguably the most difficult of all global public health issues on which to find sufficient consensus for concerted action. The “greening” of social work has similarly had its challenges, although significant literature (e.g., Dominelli 2012; Gray et al. 2013; Ramsay and Boddy 2017) makes a strong case for more concerted effort in this area, most notably in social work’s capacity to adapt existing social work methods to promote social change on climate-related injustice and inequities. Clean water, shrinking shorelines in the Pacific Islands, reconnecting human existence with ecological surrounds, and understanding and critiquing the neoliberal paradigm are all examples of how social work can intervene in this serious global public health issue.
Conclusion and Future Directions
Social work spans across multiple levels of engagement with health, and examples provided in this chapter have demonstrated that skill. Van Pelt (2009), writing almost 15 years ago, described social work and public health as “perfect partners.” She reflected that due to the capacity of public health social workers to engage well on many levels, their multidisciplinary skills and training enable them to fulfill roles beyond social work, including those with increased influence such as managers, administrators, and policy-makers. The challenges that she noted at the time, in
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terms of a dwindling workforce, the lack of specialized dual training, and the capacity of social workers to be fluent in both social work and public health jargon, essentially remain. For example, what public health workers refer to as a “social determinants of health” approach is captured by the social work language of working upstream in “community development.” A health worker’s “salutogenic” framework is in essence a “strengths-based” approach for social workers. Nevertheless, her claim – that the value of the public health social worker is their ability to navigate the respective languages and to bridge prevention and intervention, individual and community, and practice and policy – is still highly relevant now. Although the alliance is not without its challenges, particularly as there is arguably still some suspicion on both sides about who “owns” the field, there is a good and necessary fit between social work and global public health. In a more contemporary comment, Ruth (2017, p. 5421) summarizes as follows, Public health social work serves as an important base for a new era of health social work in two critical ways. First, it provides a century’s worth of experience in how to marry clinical, intermediate, and population approaches for greater impact; second, it serves as the interprofessional bridge between public health and social work. The rebuilding of this bridge is now evident across a wide range of professional activities.
Truell, Lomazzi, and Borisch (2021) report on recent global policy negotiation and activity undertaken collaboratively by social work and public health professionals, mostly pertaining to COVID-19, demonstrating that such goals are attainable, and can serve as a template for more collective action in other spheres. Despite confronting neoliberal political cultures and mandates in almost every country that separate social well-being and health (which automatically detracts from the effectiveness of both), they argue that an incorporation of the social determinants of health is still the best way forward. Macassa (2022) agrees, given that social work and public health share common paradigms, values, priorities, and often professional roles. It is, therefore, only logical that the collaboration should be strengthened to enable the coconstruction and translation of knowledge, and its worldwide dissemination. This effort can first make a real-world impact on the global inequities that hinder health and well-being and can second celebrate and reinforce those policies, practices, community initiatives, and individual behaviors that enhance human health.
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Social Epidemiology and Its Contribution to Global Public Health Patricia Chiao-Tzu Lee, Cathy Chao-Yuan Wu, and Josh Ting
Contents 1 2 3 4 5
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . What Is Social Epidemiology? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Globalization and Its Implications for Global Public Health and Health Inequalities . . . . . Impacts of Globalization on the World of Work and Workers’ Health . . . . . . . . . . . . . . . . . . . . Case Study: Evaluating the Impact of Organizational Change on Workers’ Health . . . . . . 5.1 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Measurements of Exposure: Organizational Change (OC) . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Measurements of Health Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Effects of OC on Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
The world of work has changed at an unprecedented pace in the past three decades. Social epidemiology examines the patterns of social determinants of health, and it provides powerful systems approaches to population health. In the context of globalization, rapid technological advances, economic openness, and global interconnectedness have provided opportunities for economic growth but have also inevitably led to fierce competition, altered the nature of work, and exposed workers to new health risks. This chapter presents the health challenges P. C.-T. Lee (*) School of Medicine and Dentistry, Griffith University, Gold Coast, QLD, Australia Department of Medical Research, China Medical University Hospital, China Medical University, Taichung, Taiwan e-mail: patricia.lee@griffith.edu.au C. C.-Y. Wu · J. Ting School of Medicine and Dentistry, Griffith University, Gold Coast, QLD, Australia e-mail: c.wu@griffith.edu.au; josh.ting@griffithuni.edu.au © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_8
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including health inequalities in relation to globalization and technological change, and it then uses a multilevel framework to explain how changes at the international and organizational levels driven by globalization can impact workers’ health. This chapter takes a social epidemiological approach to address the complex interaction of social, economic, and structural determinants on health. Finally, a case study is presented to demonstrate how a quantitative systematic review can be developed to inform social epidemiological research and workplace policies to improve employee health. Keywords
Social epidemiology · Globalization · Organizational change · Employee health · Quantitative systematic review
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Introduction
Global public health is facing unprecedented challenges. Population growth and socioeconomic, environmental, and climate changes have all contributed to the changing distribution and patterns of diseases and the exposure to health risks in different populations. Noncommunicable diseases (NCDs) pose a significant public health burden, accounting for 70% of deaths worldwide. Almost 75% of total NCD deaths occur in low- and middle-income countries (WHO 2022). Due to population aging and lifestyle changes, the burden of NCDs will continue to rise. Meanwhile, infectious diseases remain a major threat to population health, including the COVID-19 pandemic. The COVID-19 pandemic has been the greatest global public health and humanitarian crisis in modern history. The accumulated incidence and mortality associated with COVID-19 infection remain the major threat to global public health. In addition to direct health effects, the pandemic has presented large-scale and profound impacts on global social, economic, education, and healthcare systems, posing further negative consequences for population health and well-being. Studies indicate exacerbating mental health issues, domestic violence, food insecurity, refugee crisis, employment and working conditions, and social/health inequalities since the beginning of the pandemic (Lambert et al. 2020; Paremoer et al. 2021). Accumulated evidence shows that higher COVID-19-related mortality and adverse health consequences are observed among people from low socioeconomic backgrounds and deprived locations. It is also important to understand the complex, interactive, and cumulative effects of social determinants and comorbidities on the disproportionate patterns of health outcomes (Bambra et al. 2020; Mishra et al. 2021). In other words, socially disadvantaged populations have a higher prevalence of health risks such as smoking, alcohol drinking, overweight/obesity, unemployment, and underlying conditions or chronic diseases, which in turn expose them to a higher risk of developing severe symptoms or deaths if they contract COVID-19 infection. Despite a relatively new subdiscipline of epidemiology, the number of researchers involved in social epidemiology has been growing exponentially in the last two
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decades. As the frontrunners of social epidemiology, Berkman and Kawachi (2014, p. 5) define it as “the branch of epidemiology that studies the social distribution and social determinants of states of health” and it is concerned with “the way that social structures, institutions, and relationships influence health” (p. 2). This definition aligns with the principles and concepts of epidemiology but places an emphasis on the social and structural dynamics of health determinants, especially the impact of social inequalities on physical and mental health (Berkman and Kawachi 2014; Krieger 2001a). It focuses on a population perspective and the social and economic context in which individual behavior and other risk factors of ill health are embedded. Social epidemiologists apply a multidisciplinary approach to addressing the disproportionate distribution of social determinants on health outcomes, drawing on concepts and methods from a broad range of disciplines such as sociology, psychology, biology, economics, and political science (Berkman and Kawachi 2014). The recent trends of social epidemiological studies have moved beyond the description of patterns of health inequalities toward inquiry into the potential causal relationship between social determinants and health outcomes, especially exploring causal reasoning and mechanisms to explain the health consequences of social stratification (Kawachi and Subramanian 2018). Social epidemiologists utilize quantitative measurement tools and contextual analysis methods (such as multilevel analysis) to better understand the complex effects of social determinants on health in populations (Berkman and Kawachi 2014). This chapter takes a social epidemiological perspective to unpack how globalization shapes the changing patterns of health inequalities and global public health, as well as how it transforms the nature of work and employee health.
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What Is Social Epidemiology?
Social epidemiology focuses on understanding how different forms of social organization shape population distributions of health, disease, and well-being in order to inform strategies to reduce inequalities and improve population health (Berkman and Kawachi 2014). Social organization covers a variety of social determinants including social hierarchies, levels of inequality, discrimination, distribution of resources (e.g., income distribution), economic and political systems, organization of work, social networks and support (social capital), gender/sex, racial and ethnic groups, cultural factors, and social norms (Diez Roux 2022; Kawachi 2002; Krieger 2001a; Sanderson and Andrews 2006). It assumes that the distribution of health and disease in a society is a reflection of the distribution of social advantages and disadvantages in that society (Honjo 2004). One key area of social epidemiological research is describing and quantifying the impacts of social stratification on health (Berkman and Kawachi 2014; Diez Roux 2022; Krieger 2001a). For instance, income, education, and occupation are commonly used as proxy measures of socioeconomic status (SES) to quantify the differences in health conditions across time and place, or between different population groups. There is an extensive body of literature on
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social inequalities in health by race and ethnicity, such as higher morbidity and mortality rates in Indigenous populations than in the general population. It is important to note that race/ethnic differences are beyond biological and genetic attributions but constructed by historical and geographic origin, cultural identity, physical features, and environmental conditions. These differences may influence specific race/ethnic groups’ access to resources, opportunities, economic development, and their exposures to health risks, and thus shape their susceptibility to ill health (Diez Roux 2022; Krieger 2001a). Social epidemiology emphasizes the use of theories to explain the socioeconomic patterning of health. Drawing on Krieger’s “embodiment” framework or Ecosocial theory (Krieger 2001a, b), social epidemiologists emphasize a multilevel approach to incorporating the dynamic multidimensional interplay of social, environmental, and biological determinants into the reasoning of population distributions of disease and social inequalities in health across time and space. In this regard, poorer health outcomes among individuals from socioeconomically disadvantaged backgrounds reflect not only their poor physical environment such as crowdedness and poor housing and hygiene in their neighborhood and working environments, but also their generational exposures to detrimental social determinants of health including lower income and education, unemployment, inadequate access to healthcare services, social support, and resources, as well as risk behaviors such as tobacco and alcohol consumption, unhealthy diet, and substance use. Similar to the Ecosocial theory, Berkman and Kawachi (2014) suggest that unhealthy behaviors are not randomly distributed in the population. In fact, these risk factors are socially and economically patterned and cluster with one another. Therefore, the multilevel approach of social epidemiology takes into account the interactive and cumulative effects of various determinants on social inequalities of health and susceptibility/ resistance of certain population groups in an ecological context, which encompasses multiple levels: individual, neighborhood, regional/political jurisdiction, national, and international (Krieger 2001a, b). This multilevel contextual framework provides guiding principles for the methodological designs and analytic approaches to explore mechanisms through which social and economic systems influence health. Multilevel analyses used in social epidemiologic research can be ranging from linear and nonlinear statistical techniques to more sophisticated mathematical modeling accounting for the interactive effects of determinants at different levels, as well as adjustment for confounding and mediating factors in complex systems. The population perspective in social epidemiology highlights that individuals are embedded in societies and populations. Based on Rose’s population-based strategy for disease prevention (Rose 1992), an individual’s risk of illness reflects the collective behavior and circumstances of the population to which this individual belongs (Berkman and Kawachi 2014). In addition, most risks for a disease are distributed along a continuum (with a normal distribution) in a population and cannot be simply categorized into high and low risks. According to Rose’s paradigm, the majority of the cases of a disease are consistent with the population distributions for the major risk factors along a normal distribution, and hence, the occurrence of
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cases can be understood in the context of the population’s characteristics (Berkman and Kawachi 2014; Rose 1992). Although not all risk distributions follow the pattern of a normal curve, this population approach is crucial to explaining how disproportionate distributions of sociostructural characteristics influence the health of certain population groups. Another feature of social epidemiology is a lifecourse perspective. This approach appreciates that people’s biological and social developmental trajectories are shaped by the historical period in which they live, and by their society’s social, economic, political, and ecological context (Krieger 2001a). The lifecourse trajectories of risk provide a framework to examine how social and economic conditions influence health at different time points over the lifecourse (Berkman and Kawachi 2014; Diez Roux 2022). These theoretical frameworks and approaches help researchers conceptualize the dynamics of social systems underlying health inequality and build the evidence base for developing causal inferences and identifying policies and interventions needed to improve population health. The applications of social epidemiology in workplace health follow similar concepts and principles to explain how work organization, policies, working and employment conditions, and practices impact the well-being of workers. In their review of “working conditions and health,” Berkman, Kawachi, and Theorell (2014) presented six theoretical models, namely, (1) job demand, control, and support; (2) effort and reward imbalance; (3) organizational justice; (4) nonstandard work schedules; (5) work and family conflicts and associated supervisor and workplace support; and (6) schedule control and flexible work arrangements, to explain the impact of social and organizational dimensions of work environment on health. These models and frameworks provide comprehensive frameworks underpinning the development of quantitative measurements to establish empirical evidence of linking various work-related exposures with health outcomes. For example, researchers use self-administered questionnaires, observation, or administrative data (organizational records) to determine the relationship between socioeconomic inequalities in health in the workplace and mental disorders. Further, social epidemiologists suggest that social stratification tends to categorize workers into “good” jobs and “bad” jobs. Evidence shows that less educated individuals with a lack of skills and qualifications tend to work in “dirty, dangerous and demeaning” (3Ds) jobs (Berkman et al. 2014; Grzywacz and Dooley 2003). Therefore, they integrate sociodemographic characteristics with workplace organization and conditions into the assessment of health impact. There is a growing interest in measuring the influence of the psychosocial work environment on workers’ health. Studies utilize specific models such as the effort-reward imbalance model and the job demand and control model (taking consideration of different aspects of psychosocial work environment) to conceptualize the development of quantitative indicators/measurement tools in their questionnaires (Sanderson and Andrews 2006). Building on the abovementioned principles, the subsequent sections outline the features of globalization in shaping socioeconomic inequalities in global public health and explain how globalization as a significant macro driving force changes the nature of work, which impacts workers’ health.
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3
Globalization and Its Implications for Global Public Health and Health Inequalities
It is highly debatable as to whether globalization has positive or negative influences on our global village and its citizens. Globalization advocates believe that it accelerates technological advancement and contributes to global interconnections due to greater sharing of information, reduced costs of transportation and communication, free trade, economic openness, rapid industrialization, and intensified cross-border flows of goods, services, capital, and human resources (Bertucci and Alberti 2004; Streeten 2001). However, these changes have also been fiercely criticized by those who perceive them as threats to social equality and as exerting uncontrollable pressure on certain population groups and disadvantaged countries, as globalization has been dominated by developed countries through international negotiations and agreements (Labonté 2015). As a result, the benefits of globalization are most concentrated among high-income countries, while developing countries are marginalized and excluded from the fruit of it (UN Secretariat 2000). Researchers holding negative perspectives toward globalization are often concerned with issues such as growing competition, undermining the power of the state (particularly the poor countries), environmental impact (including climate change), weakening international safety and security, and exacerbating social inequalities (Baum 2015; Bertucci and Alberti 2004; Labonté and Schrecker 2007; Labonté et al. 2011). The multifaceted processes of globalization have diverse and widespread effects on human health (WHO 2004). It is a double-edged sword, depending on who you are and where you live. Along with an acceleration of economic growth and technological advances, globalization has enhanced health and life expectancy in many populations. However, due to inequalities in resources, power, and capacities, certain groups and societies are vulnerable to adverse consequences. For the poor, it has exhibited more negative than positive impacts on health (Baum 2015; Woodward et al. 2001). For instance, globalization facilitates industrial development through cross-border flows of goods and capital, which enables multinational companies to move their production to developing countries to take advantage of the lower production costs and looser regulations on employment conditions and environmental protection (e.g., carbon emissions) in order to maximize their profits. However, international organizations and developed countries fail to achieve agreements on global pollution control and environmental protection such as uniform reduction targets for greenhouse emissions. These issues will subsequently undermine environmental sustainability – accelerating climate change and making the planet more unlivable – and ultimately impact the global population as a whole. Unfortunately, people living in underprivileged communities and countries are suffering the most from the negative consequences of extreme weather events such as floods, droughts, heat waves, severe storms, and sea level rise (Ashrafuzzaman and Furini 2019; IPCC 2014). In their bibliographical and statistical review, Ashrafuzzaman and Furini (2019) illustrate that Bangladesh is one of the most vulnerable countries to the impact of climate change, although it has contributed very little to the total global carbon emissions. In addition, people in disadvantaged
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communities with poor living conditions are prone to adverse health effects of extreme weather disasters (Bambra et al. 2020; Kawachi 2020). Furthermore, the wide-ranging changes associated with globalization (in the forms of international travel, tourism, migration, and trade in food and other goods) have not only brought unprecedented environmental challenges, but also increased the risk of importing and exporting communicable diseases (Bettcher and Lee 2002; Cornia 2001). The outbreaks of SARS, Zika virus, Ebola, and monkeypox, as well as H1N1 influenza and the COVID-19 pandemics, have shaken global public health systems and economies since the beginning of the twenty-first century. In our interconnected world, these infectious diseases are spread through the cross-border movement of people. Emerging and reemerging infectious diseases will continue to raise challenges to global public health. As mentioned above, the COVID-19 pandemic has presented widespread health issues (including the loss of hundreds of millions of lives) and deteriorated health inequalities that lead to further negative health consequences for disadvantaged population groups. Workers are one of these vulnerable population groups impacted heavily by the global market expansion and globalization activities.
4
Impacts of Globalization on the World of Work and Workers’ Health
In the context of globalization, foreign direct investment, changes in trade regulation, flows of financial capital and goods, labor mobility, and the increasing pace in knowledge exchange and technological advancement have changed labor markets and the nature of work. The changes result in growing pressures of performance and competition, no matter whether the markets are at global, national, or local levels (UN Secretariat 2000). Under the influence of globalization, corporations relocate some productive activities and investments to reduce labor and material costs and take advantage of lower taxes, legal restrictions/labor standards, and access to local/ regional markets to stay competitive and maximize their profits. In order to cope with growing competition in the global market, enterprises and even public sectors are urged to transform and improve performance in terms of quality, standards, and timeliness of their business. Not only do they have to make radical cuts in labor costs through organizational change such as restructuring or downsizing, flexible production systems, and innovation, but they also have to improve product and service quality (Baum 2015; Grint 1998; Labonté 2015). Weakening legal standards and work-environment monitoring systems in poor countries and small companies may compromise their work safety and health protection for workers. Furthermore, economic integration and openness enable the movement of workers and increase the demand for skilled labor. National and regional wage differences encourage educated and skilled migrants from low-income countries to higher-income ones, which result in wage inequality, job insecurity, and unemployment (particularly among low-skilled or unskilled workers) (Grint 1998).
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Technological change, particularly innovations in computers, Internet, and media technologies, has facilitated globalization and accelerated global information flows. The rapid breakthrough in communication technologies has contributed not only to the growth of information exchange via the Internet and digital social media, but also to the expansion of education and business opportunities and the creation of crossboundary social networks. On the other hand, market liberalization and expansion of international trade reinforce the need for improving technologies and the demand for technological specialists and skilled workers with competencies in new technologies (Baum 2015; Bertucci and Alberti 2004). New technologies are also creating new types of work, as well as opening up possibilities and opportunities for business. For example, electronic commerce and social media (e.g., YouTube and TikTok) enable online shopping, marketing, promotion of small businesses, and transmission of goods, without considering the distance between suppliers and consumers. In order to succeed, companies and individuals involved in such new forms of business and related activities are required to develop new capacities. These changes further increase job insecurity and the inequalities in wages and working conditions between those with adequate skills and those without. Globalization and technological advances and accompanying competition have altered the entire world of work and employment practices and therefore exposed employees to new health risks. They have affected not only the occupational composition and quantity of employment but also its quality: high rates of unemployment, increasing demand for flexible and informal labor force (part-time, temporary, casual, and shift-work), growth in outsourcing, contractual arrangements, longer working hours, more home-based work, and self-employment. In contrast, permanent and full-time positions are shrinking in both the private and public sectors. The changes also drive companies and organizations to build new infrastructure and competencies (such as upgrading their computing and information technologies) to stay competitive (Chu and Dwyer 2002; Grint 1998; Labonté 2015). They are also pushed to restructure and introduce some forms of organizational change to reduce costs. Due to increasing pressure for changes and flexibility in employment and working conditions, workers may be required to learn new skills, adapt to new tasks and tighter work schedules, and relocate to new workplaces, which might cause job insecurity and greater stress (Chu and Dwyer 2002). The COVID-19 crisis, as a result of globalization, has caused profound and catastrophic effects on all aspects of human life. It has brought about abundant disruptions and unpredictable changes to the world of work. Due to economic downturns, implementation of various nonpharmaceutical measures, and travel restrictions locally and globally during the pandemic, all work organizations were forced to shut down their business activity permanently or temporarily, and/or make necessary adjustments such as restructuring and downsizing to reduce costs and ensure long-term viability (ILO 2021). Organizational change and restructuring have inevitably led to largescale unemployment, particularly for those in less secure positions and with inadequate skills. The loss of income increases their vulnerability to displacement and various health issues (Godderis and Luyten 2020; Shoss 2021). On the other hand, these changes have also pushed those remaining in the workforce to adapt to
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relentless changes and uncertainty in the future. For instance, during the strict nationwide lockdowns, all workers (except essential workers) started their workingfrom-home practices and were urged to upgrade their skills to use digital technologies to perform usual duties at home and stay connected with their colleagues and customers. While the global economy is on the way to recovery, the world of work is unlikely to return to the “old normal” prior to the pandemic. The shifts in work and employment patterns have long-term and short-term occupational health implications and expose workers to greater stress (Berkman et al. 2014; Shoss 2021). In the rapid changing environment as discussed above, organizations are facing challenges including higher absenteeism, staff turnover, mistrust of management, worsening labor relations, poorer workplace culture, reduced staff morale, and low job satisfaction and productivity, all of which could damage company viability and competitiveness (ILO 2016). The changing nature of work involving the changes of a diversity of risk factors both within and outside the work environment will inevitably impose threats to workers’ health and well-being. Figure 1 illustrates the complex nature of workplace health issues, influenced by intercorrelated multilevel determinants. The framework depicts how changes in the macroenvironment (in social, economic, and political aspects) driven by globalization lead to fundamental changes at the national and organizational levels, which contribute to changes in employment practices and working conditions and thereby affect employee health. As suggested by social epidemiologists, to address workplace health issues and interweaving psychosocial risk factors, a contextual, multilevel approach is needed (Berkman and Kawachi 2014; Berkman et al. 2014). The following sections use empirical data and official statistics to demonstrate existing situations of occupational health problems globally and the alarming trend of workrelated mental health issues especially work stress, as well as the estimated burden of these issues. International data and labor statistics have highlighted the growing concerns with work-related health issues and the potential economic burden of these problems. According to the World Health Organization (WHO) and International Labour Organization’s (ILO) Joint Estimates of the Work-Related Burden of Disease and Injury (WHO/ILO 2021), a total of 1.88 million deaths and 89.72 million disabilityadjusted life years (DALYs) are estimated to be attributable to occupational risk factors and health outcomes. Of those total deaths, 80.7% and 19.3% are accounting for work-related diseases and injuries, respectively. Another striking result from the report indicates that long working hours (55 h/week) contribute to the largest number of occupational deaths (around 40%), followed by exposure to air pollution (25%) and injuries (20%). Further, deaths from stroke and heart disease (recorded as the second and third leading causes of death among all work-related diseases) due to exposure to long working hours had risen by 41% and 19%, respectively, from 2000 to 2016 (WHO/ILO 2021). These figures have clearly reflected an increasing trend in psychosocial occupational risk factors especially work stress and demonstrated their manifest impact on workers’ health. The economic burden of work-related health issues is considerably high. Recent studies estimated that work injuries and diseases in the United States and Australia were about USD$250 billion (1.8% GDP) and
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Globalization: global level Global governance & rules
Cross-border flows of capital, goods & people
Market openness & trade liberalization
Technological advances & diffusion of information
Global environmental change
Increasing interconnectedness & competition
National and organizational levels National governance & policy changes
Changes in industrial structure & environmental regulations
Change in occupational policy and regulations
Increased mobility of capital & labour
Organizational change (structural & policy changes)
Changing nature of work, increasing exposures to occupational risks
Individual level Impacts on workers: unemployment, flexible employment, job insecurity, income insecurity, longer working hours, poorer workplace health & safety, poorer worker support and protection
Health consequences: high absenteeism, increased occupational health problems (deaths, injuries and diseases), work-related stress and mental health issues
Fig. 1 Framework of impact of globalization on worker’s health
AUD$61 billion (4.8% GDP), respectively, which were consistent with the ILO’s estimate: 4% of global GDP loss due to work accidents and diseases (Leigh 2011; Safe Work Australia 2015). Moreover, the impact of unemployment on health and its social and economic implications are well documented (Godderis and Luyten 2020; Grint 1998). It is also noted that a disproportionately large work-related burden of disease is observed in low-middle income countries, males, and older age groups. This data highlights the need for comprehensive interventions and public health policies to reduce exposure to risk factors and ensure healthier, safer, and more socially just workplaces (WHO/ILO 2021). As discussed earlier, globalization and technological change have driven changes in work organizations and transformed employment practices and working conditions. These changes can have profound effects on workers’ health including greater
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stress. Work-related stress and mental health issues are the fastest-growing health problems worldwide. An estimated 75 million employees in Europe perceive that they are under considerable work stress and the number of people who suffer ill health due to work-related stress has more than doubled since 1990 (ENWHP 2006). The burden of work-related mental health issues is significant. For example, a recent ILO report revealed that, within the European Union Region, over 40 million people suffer from work-related stress, and the estimated cost of work-related depression is €617 billion a year in Europe, a large proportion (83%) of which is attributed to absenteeism, presenteeism, and loss of productivity (ILO 2016). Similarly, another study reports that excessive workplace stress causes 120,000 deaths and resulted in nearly $190 billion (6–8% of total healthcare expenditure) in healthcare costs in the United States each year, primarily derived from high demands at work ($48 billion) (Goh et al. 2015). The levels of work stress and its burden have been exacerbated since the COVID-19 pandemic began. “The Stress in America Survey 2020” (APA 2020) shows that the proportion of Americans identifying work as a significant source of stress has a staggering increase from 46% in 2019 to 63% in 2020. In addition, the American Psychological Association (APA 2022) warns that stress and burnout have reached all-time highs across occupations, particularly among those already overloaded healthcare workers. In the APA’s 2021 Work and Well-being Survey, 79% of employees had experienced work-related stress and almost 60% of the participants reported negative impacts due to work stress. These included physical fatigue (44%), cognitive weariness (36%), emotional exhaustion (32%), and lack of interest, motivation, or energy (26%) (APA 2022). These alarming figures for work-related mental health crises will reflect on the future burden of work-related illness and adverse health outcomes, as well as the impacts on organizations’ productivity and national/global economies. It is crucial to develop effective strategies and policies to minimize exposure to potential health risk factors in the workplace and to protect employee health and well-being at all levels. Epidemiology utilizes quantitative methods and tools to collect and analyze data to investigate the distribution and determinants of health issues in populations (Lee 2022). The tools are valuable in quantifying the effects of physical hazards and psychosocial risk factors on workers’ health to inform health protection policies and workplace health promotion interventions. Social epidemiologists modify sociological and psychological theoretical frameworks to assess the impacts of various domains of work organization on the health and well-being of workers. Based on the theoretical frameworks, they develop a broad range of measurement tools to determine how different dimensions within and outside work organizations can affect workers’ health (Berkman et al. 2014). The next section presents a case study of using social epidemiological data to assess the impact organizational change (as a main consequence of globalization) on employee health. Drawing on the theoretical and methodological understanding of social epidemiology, the case study also intends to offer insight into epidemiological approaches in terms of quantitative instruments available in the existing literature to establish the relationship between two abstract concepts, organizational change and health.
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5
Case Study: Evaluating the Impact of Organizational Change on Workers’ Health
5.1
Background
In the context of globalization and technological advancement, evolving customer trends, and fluctuating economies, change has become the key for organizational survival. Organizational change (OC) refers to any change that affects the strategic position of the organization relative to its competition (Smith 2002). Common forms of OC include merger and acquisition, business expansion, culture change, technological upgrade, process improvement, and restructure of organizations such as downsizing (Smith 2002). Organizational changes are initiated to respond to customer demands, address staff concerns, counter crisis situations, or adjust organizational strategies (Hyde 2012). Despite the necessity to change with circumstances, successful OC is often met with difficulties for the organization. For example, managers’ lack of necessary competency and tools to successfully implement change (Higgs and Rowland 2005), employees’ low organizational commitment (Oreg et al. 2011), or high degrees of cynicism (Tsai and Harrison 2019;) may serve as barricades to successful OC. The implementation of OC has profound impacts on employees which cannot be overlooked. As an example, downsizing often involves layoffs for some employees. To make up for the unoccupied positions, surviving employees often take on newly modified roles which involve increased workload, lower levels of skill discretion, and lower participation in the decision-making process (Blomqvist et al. 2018; Østhus 2016). Financially, they may experience reduced pay rises, and pay cuts (Østhus 2016). On a social level, reducing staff levels for remaining employees have been associated with separation from family and friends due to employee relocation, and increased number of employees working in isolation (Quinlan 2007; Will 2015). Despite adverse working conditions, many employees need to cope with increased job uncertainty through presenteeism – showing up to work while ill, and taking tasks and work pressures back home (Quinlan 2007). The increased pressure, job insecurity, and longer working hours inevitably take a toll on employee health (Fullerton et al. 2020). Currently, data collection on both OC and employee health outcomes pose different challenges. In terms of OC data collection, there are currently two challenges. First, despite efforts in differentiating between the different types of OC (i.e., mergers, downsizing) through quantification (Grønstad et al. 2019), the magnitude of one specific type of OC remains difficult to quantify. Second, objective data on OC (i.e., changes in employee number) may not always align with employee experiences. For example, Loretto et al. (2010) found that greater perceived change by the employee was associated with poorer health, while objective measures on the number of changes was associated positively with health. In terms of data collection on employee health outcomes, current research has largely focused on subjective employee perceptions via self-reported questionnaires. Such data collection method is subject to reporting bias and is able to be validated against an external criterion
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(Koukoulaki et al. 2017). Hence, there is a need for research to collect objective employee health data (cortisol levels, heart rate, and breathing) to substantiate the claim between OC and health outcomes (Contreras and Gonzalez 2020; Hanson et al. 2016). In addition, a substantial amount of previous research relied on cross sectional survey data which only measures the impact of OC change on employee health outcomes at one point in time. More longitudinal studies would better measure changes in employee perceptions and health outcomes over time (Koukoulaki et al. 2017; Jensen et al. 2019). Therefore, this case study aims to determine the effects of exposure to OC on employee physical and mental health and explore quantitative measurements based on the findings of a systematic literature review to establish the relationship between OC and workers’ health. However, the methodological approach of the systematic review is the focus of this chapter. In the systematic review study presented below, the main findings of 23 included publications were extracted and analyzed. Table 1 details the extracted components from the selected publications. Figure 2 presents that the distribution of publication years among the included studies were ranging from 1999 to 2017, with only 1 article published in 1999 (4%) and 11 (48%) published recently after 2010. However, 10 out of the 23 publications (43%) actually conducted their studies in 1990–2000 (see Table 1). A large proportion (n ¼ 20, 87%) of the studies concentrated in Europe, especially Scandinavian countries (a total of 15 studies conducted in Norway, Finland, Sweden, and Denmark) (see Table 2). The remaining three studies outside Europe were developed by researchers in North America (two in Canada and one in the United States). The 23 studies included a large total sample size of nearly 1.9 million (N ¼ 1,887,505), representing working populations of white- and bluecollar workers across various occupations, ranging from employees to middle and executive managers, and in both public and private sectors. The countries contributing to the biggest combined sample sizes were Sweden (5 studies, N ¼ 1,682,391), Norway (2 studies, N ¼ 141,921), and Finland (6 studies, N ¼ 37,085), as many studies in these countries made use of national/municipal data to enable populationbased data linkage and analysis. All the included studies employed observational designs, with 6 cross-sectional studies (26%) and 17 longitudinal studies (74%), including 8 cohort studies in which health outcomes in the group undergoing OC were compared with a reference group across several time points. Repeated health outcome measurements were undertaken prior to and following OC (and during OC in some studies) in longitudinal/cohort studies. Apart from studies using large-scale population data, 17 studies (74%) utilized questionnaire surveys for data collection from their participants.
5.2
Measurements of Exposure: Organizational Change (OC)
The exposure factor in this review is any form of OC. The included publications clearly detailed the processes of specific types of OC that took place in the studied work organizations, where the employees (including managers) experienced significant changes in organizational structure, culture, and environment (e.g., relocation
Study region/ country/ continent Canada
Norway
Publication (year of study) ArmstrongStassen (2005) (1996–1998)
Bernstrom and Kjekshus (2015) (2005–2007)
Hospital health professionals (nurses, physicians, and others) (34,712)
Cross-sectional
Target population (sample size) Study design Executive-level Longitudinal and middle managers federal government civil service (Time 1: 458; Time 4: 234) Statistical analysis methods Analyses of covariance
Public registries: statistics Multilevel Norway’s long-term logistic sickness absence: FD-trygd regression (the Statistics Norway Events Database)
Data collection tool/ outcome measure Questionnaire survey; wellbeing: Hopkins symptoms checklist; burnout was assessed using emotional exhaustion subscale (six items)
Table 1 Summary of included studies on organizational change and health Mediator/ mediating effects Job insecurity, workload, control-oriented versus escape coping strategies
– Frequency of structural changes, patient care-related changes (“Events Database” organizational change: INORG (INTernal
Exposure measure (type of OC) Reduction of executive- and middle-level managers by 20% Downsizing (DS): T1 prior to DS, T2 during DS-1, T3 during DS-2, and T4 completed DS
Main findings (effects on health) Middle managers reported significantly higher levels of health symptoms than executivelevel managers during the downsizing period (T2 and T3); they experienced significantly increased health symptoms between T2 and T3; no significant changes in burnout over time for either group of managers Higher probability of long-term sickness absence among employees who experienced more frequent structural
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Police inspectors Longitudinal (36) (T1 and T2)
Sweden
Grossi et al. (1999) (1994–1997)
Cross-sectional analysis and quasilongitudinal analysis: before and 1 year after privatization
Three companies: cement sector (249)
Portugal
Cunha and Cooper (2002) (1994, 1996)
Longitudinal: Public officers 2006 versus (white-collar workers working 2008 in seven municipality or county administrations) (359)
Denmark
Carlsson et al. (2017) (2006–2008)
Questionnaire of organizational culture (41 items); Privatization: three groups totally stateowned, partially privatized, and totally privatized Reorganization (two police organizations merged into one)
Two-step analysis: ANOVA and multivariate tests
Spearman’s rank correlations, multivariate regressions, and t-tests
Survey on occupational stress indicator (61 items); physical ill health scale (12 items); metal ill health scale (18 items)
Questionnaires (Stress Profile) and blood samples (multiple biomarkers: serum levels of gammaglutamyltransferase (GGT), glucose, lipids, prolactin, testosterone, and cortisol)
Workplace reorganization (merger), two groups: merged five organizations, unmerged – two organizations
Linear mixed model (GLM) with repeated measures
Allostatic Load (AL) measured using 13 physiological markers (clinical examinations); survey on psychological distress (stress symptoms the Copenhagen Psychosocial Questionnaire (COPSOQ) – ten items and perceived stress – one item
ORGanization) database)
satisfaction with work, information, task-oriented leadership, respect and dignity, and perceived deteriorations in
Perceived psychosocial work environment (job strain, effort-reward imbalance)
(continued)
changes than those who experience less changes AL increased significantly during workplace reorganization in all groups; a tendency of significant increase in AL in the merger group compared with the control group Perceived occupational stress was higher before privatization; physical and mental ill health were higher in the companies that experienced privatization T1: A positive association between worry about employment and symptoms of burnout during the reorganization.
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Target population (sample size)
22–54 years old in 2016 gainfully employed residents, entire population, 632,500 (exposed) versus 1,021,759 (unexposed)
Study region/ country/ continent
Sweden
Publication (year of study)
Hanson et al. (2016) (2004–2010)
Table 1 (continued)
Longitudinal: three cohorts (C1: 2006–2007, C2: 2007–2008, and C3: 2008–2009) newly exposedunexposed, stayers versus job changers
Study design
Purchases of prescription antidepressants (Swedish National Prescribed Drug Register)
Data collection tool/ outcome measure
Repeated measures regression analyses (GEE generalized estimating equations), Odds Ratios (ORs)
Workplace downsized 18%: pre(before downsizing year peri- and post-) (through data linkage)
Exposure measure (type of Statistical analysis methods OC)
–
the ethical and moral standards of the organization
T2–T1: mean scores for the Stress Profile subscales worry about employment and workload decreased between measurements (after merger). T2–T1: significant decreases in total cholesterol, LDL-cholesterol, LDL/HDL-ratio, and prolactin, increases in testosterone and cortisol Downsizing is associated with a slight increase in the odds of purchasing prescription antidepressants among people without previous sickness absence or disability pension
Mediator/ Main findings mediating effects (effects on health)
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Cohort study Raisio, Finland Municipal (7-year employees in Raisio (n ¼ 550) longitudinal)
Cohort (T1: start of OC, T2: 12 months later of OC), study versus reference groups
Kivimäki et al. (2001a) (1990–1997)
Aged care employees: T1: 226 (160 vs. 66); T2: 156 (112 vs. 44)
Sweden
Hansson et al. (2008) (2003–2004)
Survey including selfreported health (SRH) – one item, work-related exhaustion (Quality of Work and Competence questionnaire (QWC) – three items blood samples (biological stress markers: stress-responsive hormones serum cortisol, serum prolactin, and dehydroepiandrosteronesulfate (DHEA-S)), sick leave score (employer’s data register) Survey investigating selfrated general health (fivepoint scale)
(continued)
Downsizing predicted adverse changes in work characteristics (mediators) and a long-lasting decline in selfrated health Decreased job control, high job insecurity, and increased physical demands, in combination, appeared to be the linking mechanism between downsizing and general health
Organizational downsizing (before T1, during T2, and after T3): Organizational records were used – reduction in days worked between T1 and T2
Correlations, linear regression, and logistic regression models
Job Insecurity Scale (5 items); Job Control Scale (18 items) and Conflicts with Supervisor Scale (3 items)
DHEA-S (recovery hormone) significantly changed across time and between groups, days of sick leave increased in the study group and the reference group
Work Reorganization satisfaction (type not specified) (T1 vs. (0–100%) T2)
Two-factor ANOVA (group vs. time, for repeated measurement) and one-way ANOVA, McNemars chi-square test
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Target population (sample size) Study design Cohort study Raisio employees in continuous employment for at least 6 months in both 1991 and 1993 (764)
Municipal Cohort design employees in ten Finnish cities (26,653) (three groups: 4783, 4271, 17,599)
Study region/ country/ continent Raisio, Finland
Finland
Publication (year of study) Kivimäki et al. (2001b) (1990–1993)
Kivimaki et al. (2007) (1994–2000)
Table 1 (continued)
The number of prescriptions for psychotropic drugs, such as antidepressants, anxiolytics, and hypnotics, were calculated – nationwide register
Data collection tool/ outcome measure Survey on self-reports of severity and sites of musculoskeletal pain (scale, three indicators); medically certified musculoskeletal sickness
Association: negative binomial regression analysis
Statistical analysis methods Poisson regression (GENMOD and GLM procedures) and logistic regression models
Downsizing three groups: downsized and kept jobs, downsized and lost jobs, and nondownsized
Exposure measure (type of OC) Organizational downsizing: an ecological measure of downsizing (three levels): minor (18%) downsizing Mediator/ mediating effects Psychosocial work characteristics and healthrelated behavior
Main findings (effects on health) OR for severe musculoskeletal pain between major and minor downsizing and the corresponding rate ratios for musculoskeletal sickness absence were 2.59 (95% confidence interval (95% CI) 1.5–4.5) and 5.50 (3.6–7.6), respectively [downsizing (major and minor levels) increases the risk of musculoskeletal pain] Downsizing but kept jobs were at a higher risk of being prescribed psychotropic drugs The association of downsizing was strongest with hypnotics among the men and with
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Employees of the Cross-sectional 13 Municipalities municipalities affected by the in Greece restructuring (231 merged to 92) (n ¼ 1592)
Koukoulaki et al. (2017) (2015–2016)
Longitudinal design (panel data)
57 hospitals in Hospital Norway employees involved in 23 mergers Across 57 hospitals in Norway (107,209)
Kjekshus et al. (2014) (2000–2009)
Fixed effects multivariate regression analysis (using panel data)
Survey on outcomes: stress ANOVA, multivariate (one item) and emotional linear regression exhaustion (five items) models
Accessing employers’ databases: long-term sickness: absent for more than 16 days
A major restructuring program (the “Kallikratis”): magnitude (15 items) and significance (3 items) of organizational change scales
Merger: “yearssince-merger”
(continued)
anxiolytics among the women An increased rate of psychotropic prescriptions after downsizing was also seen in male workers who lost their job A significant but modest effect of mergers on longterm sickness absence in the year of the merger, and in years 2, 3, and 4 (especially for women) Information and Permanent support, employees perceived reported higher justice, and levels of workinvolvement related stress and during the emotional change; other job exhaustion characteristics Employees (e.g., job working in urban insecurity) planning services and waste collection services reported significantly higher levels of stress
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Civil servants in the study municipalities and counties (n ¼ 685)
Five municipalities and two counties in Denmark
Six factories in Employees Finland (blue-collar) in Finnish forest industry (382)
Canada
Netterstrøm et al. (2010) (2006–2008)
Pahkin et al. (2013) (2008–2009)
Sablonnière et al. (2012)
Nurses employed in a Canadian
Target population (sample size) Employees in the Alcoa company (over 140,000
Study region/ country/ continent A large multisite aluminummanufacturing company, Alcoa in the USA
Publication (year of study) Modrek and Cullen (2013) (2006–2012)
Table 1 (continued)
Cross-sectional (mailed questionnaire)
Pre- and postdesign/ cohort: 2-year follow-up study (postal questionnaire surveys) Pre- and postdesign
Study design Longitudinal (2006–2012): 7 plants were categorized as high layoffs plants; the other 23 were controls
Statistical analysis methods Hierarchical logistic regressions
Restructuring (personnel reduction/ dismissals) – T1, T2 comparison
Collective relative deprivation
The level of functional wellbeing improved, but the level of psychological well-being decreased after restructuring Perceiving OC as rapid and negative is
Exposure measure (type of Mediator/ Main findings OC) mediating effects (effects on health) In 2010–2012, Downsizing workers who across 30 plants remained at in 2009: severely (1) change in size downsized plants of the workforce; reported (2) having significantly experienced a higher work mass termination stress than event workers at all other plants (as control group) across multiple work stress questions The incidence of Working Reorganization depression in the conditions, (merger) in Jan merger group was psychosocial 2007: three not significantly groups – merger, work higher than the environment new-job, and other two groups factors control groups
Path analysis and A major Health Survey on psychological bootstrap Care reform in a distress using Psychiatric regional hospital: Symptoms Index (14 items,
Survey including physical ANCOVA (work ability sum scale: four items) and psychological (three items) well-being scales (fivepoint Likert scales)
Survey including the Major General linear model and Depression Inventory logistic (MDI): 12 items regression analysis
Data collection tool/ outcome measure Self-reported stress (three items) (using data in annual work engagement survey 2006–2012)
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3 dimensions: depression, anxiety, anger and cognitive disturbance) and burnout symptoms – Maslach Burnout Inventory-Human Services Survey (22 items)
technique (using AMOS)
White-collar and Pre- and blue-collar postdesign (T1– employees in T4) Finnish part of the enterprises (2225)
Two multinational firms in Finland
Vaananen et al. (2004) (1996 and 2000)
Survey including measures of subjective health: exhaustion (five items) and functional incapacity (three items)
Binary logistic regression and general linear model (GLM)
Ordinary least Cross-sectional Survey including (internet survey) psychological distress scale squares (OLS) regression based on the General Nordic Questionnaire for psychological and social factors
Employees of three banks (1880)
Iceland
hospital (109 nurses)
Snorradóttir et al. (2013) (2008)
(not specified)
Organizational mergers in 1999 – using change in job position (changes in job content and
Perceptions of the pace of negative change (validated tool): (a) the number of tasks, (b) the scope of tasks, and (c) the scope of responsibilities – changes occurred in the last 2 years Downsizing and restructuring (direct question with yes/no responses) – four subquestions: (a) contract changed to working less hours, (b) salary reduced, (c) transferred to another department, and (d) been assigned new tasks within same department
Social support (from organizational, supervisor, and coworkers at work)
Psychosocial work environment (job demands, job control) and empowering leadership and social support
(continued)
Psychological distress was higher among employees most entangled in the downsizing and restructuring process Being subjected to downsizing within own department, salary cut, and transfer to another department, was directly related to increased psychological distress A decline in job position strongly increased the risk of poor subjective health after the merger
associated with feelings of collective relative deprivation, which generates psychological distress and burnout symptoms
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Hospital admissions due to Prospective psychiatric disorders were cohort study (1996 and 2000) prescribed a psychotropic drug or attempted or committed suicide (using Hospital Discharge Register, Drug Imbursement Register and Statistics Finland national mortality register) Cross-sectional Survey investigating Registered psychological well-being (questionnaire nurses in ten using Job Stress perception general hospitals survey) and tool – 19 items (from follow-up of (2094) SPPN, Stress Professionnel absenteeism 12 months after Positif et Negatif questionnaire); sickness the survey
Belgium
Verhaeghe et al. (2006) (2003)
Industrial employees (6511)
Finland
Vaananen et al. (2011) (1994–2005)
Study design
Data collection tool/ outcome measure
Target population (sample size)
Study region/ country/ continent
Publication (year of study)
Table 1 (continued)
Assessment of change during organization merger (three items)
Appraisal of recurrent changes at work: five aspects including supervisor, tasks, colleagues,
Cox proportional hazards models (person-days), HRs
Logistic regressions
organization of work)
Exposure measure (type of Statistical analysis methods OC)
SF-12 questionnaire: including a Physical Component Summary (PCS) and a Mental
The occurrence of changes in the work environment had a negative impact on staff psychological
Mediator/ Main findings mediating effects (effects on health) Weak organizational support was associated with impaired subjective health, especially in blue-collar workers, while weak supervisor support impaired functional capacity in whitecollar workers Merger-related Covariates: negative health-related and psychosocial experiences were associated with characteristics and self-reported elevated risk of postmerger health status psychiatric events (HR 1.60, 95% CI 1.19–2.14)
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London-based office staff aged 35–55 in 20 civil service departments (n ¼ 4682)
White-collar employees: 15 major companies several small-
London, UK
Sweden
Virtanen et al. (2010) (1991–2001)
Westerlund et al. (2004a) (1992–1995)
Cross-sectional
Cohort study (8-year): baseline: 1991–1994; three follow-ups: 1995–1996, 1997–1999, 2001
Targeted health screening (biomarkers of CVD risk: blood pressure, serum cholesterol, triglycerides, and fibrinogen), job strain
ANOVA, Kruskal– Wallis H, chi-square multivariate
Cox proportional Work disability: survey data: the participants hazard models who retired from civil service due to health reasons or left service and classified themselves as long-term sick
absence (employer’s data, frequency, and duration)
Privatization using one statement to measure this: “change of your department into an agency” with four options: (1) has happened, (2) is planned, (3) not certain what will happen, and (4) is not planned Reorganization – organizational instability: five categories – “Stable,”
Covariates: selfrated health and preexisting conditions, General Health Questionnaire (GHQ-30), and health behaviors
working hours, Component and work location Summary (MCS)
(continued)
Compared to the “Stable”: systolic blood pressure (SBP) is significantly
well-being Changes appraised as threatening were negatively related to job satisfaction and eustress, and positively related to distress and sickness absence; changes appraised as challenging were positively related to job satisfaction and eustress but had no impact on distress and sickness absence Risk of work disability was higher among the employees who were transferred to an executive agency (HR 1.90, 95% CI 1.46–2.48) compared with those whose job was not transferred
Social Epidemiology and Its Contribution to Global Public Health 95
Study region/ country/ continent
National data, Sweden
Publication (year of study)
Westerlund et al. (2004b) (1989–1999)
Table 1 (continued)
Employees participating in biennial national Swedish Work Environment Surveys (n ¼ 24,036)
scale entrepreneurs in Stockholm (n ¼ 3904)
Target population (sample size)
Longitudinal study: biennial national Swedish Work Environment Surveys from 1989 to the end of 1999
Study design
Long-term sickness absence (90 days): National Insurance database; hospital admission due to workrelated illness (circulatory diseases, musculoskeletal gastrointestinal and psychiatric illnesses) data of hospital admission from patient registry
using The Swedish Demand –Control Questionnaire
Data collection tool/ outcome measure
Logistic regression
analyses of covariance (MANCOVA)
Downsizing and expansion (data from Statistics Sweden): levels of change in workforce size: expanded by 8%, and 18%, or reduced by 8%, and 18%, or no change
“Changing/ Growing,” “Threatened Private,” “Questioned Public,” and “Small Firms”
Exposure measure (type of Statistical analysis methods OC)
lower in the “Changing/ Growing” group; cholesterol and triglycerides are significantly elevated in “Questioned Public” Fibrinogen is significantly elevated among “Small Firms” and in “Questioned Public” Exposure to large expansion was related to an increased risk of long-term sickness absence and hospital admission; moderate downsizing was associated with an increased risk of sickness absence
Mediator/ Main findings mediating effects (effects on health)
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Year of publication 7 7
6
6 5
4
4
4 3
2
2 1 0 1995-2000
2001-2005
2006-2010
2011-2015
2016-2020
Fig. 2 Frequency distribution of year of publication among the included studies. Note: One study investigated downsizing and restructuring in the survey (Snorradóttir et al. 2013) Table 2 Country of the included studies and number of study in each country
Continent Europe
North America Total
Countries Norway Finland Sweden Denmark Iceland UK Belgium Portugal Greece The USA Canada
Number 2 6 5 2 1 1 1 1 1 1 2 23
Sample size 141,921 37,085 1,682,391 1044 1880 4682 2094 249 1592 14,000 567 1,887,505
of jobs and working in new departments). Figure 3 outlines the distribution of different types of OC implemented in the studied organizations. The most common type of OC mentioned by the researchers of the included studies was downsizing (n ¼ 8, 35%), followed by merger (n ¼ 6, 26%) and unspecified major transformation in the workplace (n ¼ 4, 17%). It is noted that one study assessed downsizing and restructuring (Snorradóttir et al. 2013). The unspecified OC was described as ‘“reorganization” or OC in various aspects, for example, significant changes in supervisor, tasks/responsibilities, colleagues, working hours, and work location due to healthcare reforms in hospitals reported by registered nurses (Sablonnière et al. 2012; Verhaeghe et al. 2006). A commonly accepted definition of major downsizing is a workplace with 18% of staff reduction (Hanson et al. 2016; Kivimäki et al. 2001a, b; Westerlund et al. 2004b) when using population data in
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Type of organizational change 8 8 7
6
6 5
4
4
3
3
3 2 1 0
Downsizing
Merger
Privitization Restructuring
Other
Fig. 3 Distribution of different types of OC observed in the included studies
registry-based studies. Some studies included OC questions in their surveys to measure the exposure to OC from employee perspectives. For example, Snorradóttir and colleagues (2013) used a direct question with yes/no responses to determine the occurrence of downsizing and restructuring. Then four subquestions were used to probe further details: (1) contract changed to working less hours, (2) salary reduced, (3) transferred to another department, and (4) been assigned new tasks within same department. In terms of merger, some researchers determined organizational merger simply by observation of such events (e.g., one department merged with one or more than one department or agency) occurring during the study, others used data reported by the respondents in their surveys. For instance, in their survey, Netterstrøm et al. (2010) found that 295 out of 685 participants were merged with other units. The work organizations undergoing privatization in the included studies were either civil service departments or previously government-/state-owned companies (Cunha and Cooper 2002; Virtanen et al. 2010; Westerlund et al. 2004a). The measurement of privatization was mainly determined according to the participants’ response to a specific survey question with given options like totally state-owned, partially privatized and totally privatized. The measurement of restructuring was somewhat similar to downsizing and merger such as self-reported personnel reduction and dismissals (Pahkin et al. 2013; Snorradóttir et al. 2013), perceived magnitudes, and significance of OC (Koukoulaki et al. 2017).
5.3
Measurements of Health Outcomes
Table 3 summarizes a variety of health outcomes measured in the included studies. They are classified into three categories: physical health, physical and mental health,
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Table 3 Health outcomes reported by the included studies (A) Physical health
(B) Physical and mental health
(C) Psychological/ mental health
Health outcome measure Self-reported physical ill health Work disability (self-reported) Musculoskeletal pain (self-reported) Attempted or committed suicide Sickness absence/sick leave Biomarkers (physical/risk markers of chronic diseases and stress-responsive hormones) Hospital admission due to psychiatric disorders/ work-related illnesses Self-reported general health Mental ill health (self-reported) Perceived stress (self-reported) Work-related exhaustion/burnout/job strain Purchases prescription antidepressants/psychotropic drugs
Frequency 3 1 1 1 6 4 2 3 5 6 6 3
and psychological/mental health. Some studies (n ¼ 13, 56.5%) reported multiple health outcomes. The quantitative methods employed to assess “physical health” included sickness absence/sick leave (n ¼ 6), self-reported physical health (n ¼ 3), self-reported disability, musculoskeletal pain (severity and site), and attempted or committed suicide (Kivimäki et al. 2001b; Vaananen et al. 2011; Virtanen et al. 2010). Physical health and well-being was measured using quantitative scales such as Physical Ill Health Scale (Cunha and Cooper 2002, 12 items) and Hopkins Symptoms Checklist (Armstrong-Stassen 2005). Work-related disability and musculoskeletal pain were both reported by the participants (Virtanen et al. 2010; Kivimäki et al. 2001b), while the information of sickness absence/sick leave was obtained from employer’s or government databases. Mental ill health (n ¼ 7) and self-reported stress (n ¼ 5) were the most addressed health outcomes in the “psychological/mental health” category. There are many well designed and validated instruments available for measuring an array of mental health issues (n ¼ 5) including stress (n ¼ 6). For instance, the authors of the included publications applied existing stress assessment tools to identify stress and associated symptoms such as the Copenhagen Psychological Questionnaire (ten items for stress symptoms, Carlsson et al. 2017), Occupational Stress Indicator (Cunha and Cooper 2002), and Stress Profile Questionnaire (Grossi et al. 1999). The tools/scales used to identify mental health problems and psychological distress included Psychiatric Symptoms index (Sablonnière et al. 2012), the General Nordic Questionnaire for Psychological and Social Factors, Stress Professionnel Positif et Negatif questionnaire (Verhaeghe et al. 2006), and Major Depression Inventory (MDI) (Netterstrøm et al. 2010). In addition, some researchers measured work-related exhaustion (Hansson et al. 2008; Koukoulaki et al. 2017; Vaananen et al. 2004), burnout (Armstrong-Stassen 2005; Sablonnière et al. 2012), and job strain scales (Westerlund
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et al. 2004a) (combined total n ¼ 6) as alternative indicators to determine workrelated stress and mental health impacts. Three studies utilized population data of purchases or prescriptions for antidepressant or psychotropic drugs in national drug registry (Hanson et al. 2016; Kivimaki et al. 2007; Vaananen et al. 2011). Lastly, some clinical and self-reported data were used to evaluate employee general health states or both “physical and mental health.” The studies examined several physiological markers to detect risks of stress-induced illness in cardiovascular, metabolic, neuroendocrine, and immune systems and stress-responsive hormones such as serum cortisol, serum prolactin, and DHEA-S (recovery hormone) (Carlsson et al. 2017; Grossi et al. 1999; Hansson et al. 2008; Westerlund et al. 2004a). Interestingly, Carlsson et al. (2017) collected participants’ biological samples to analyze 13 physiological markers used to calculate an Allostatic Load (AL) score, where AL was described as “the strain on the body produced by repeated physiologic or allostatic responses activated during stressful situations” (p. 34) in the study. In terms of measuring general health, some researchers simply used one to two questions to ask participants to rate their perceived levels of general health (Hansson et al. 2008; Kivimäki et al. 2001a) or physical and mental ability to perform work duties (Vaananen et al. 2004). Another method applied to collect objective clinical health data is through data linkage to find individuals with records of hospital admission due to work-related illness (psychiatric disorders, circulatory diseases, and musculoskeletal and gastrointestinal illnesses) (Vaananen et al. 2011; Westerlund et al. 2004b). In summary, the health outcome measures in the included papers varied substantially. Even for objective physical health measures such as long-term sick leave, it was defined differently ranging from over 16 days (Kjekshus et al. 2014) to 90 days (Westerlund et al. 2004b). The selections of mental health measurements also varied across studies, despite a small number of studies using patient data with diagnoses of psychiatric disorders. This is consistent with the finding regarding the diverse measures of mental health outcomes among the publications included in the review by Bamberger et al. (2012). Nevertheless, this present systematic review has identified a broad range of indicators and validated measurement scales as options for future social epidemiological research in occupational health.
5.4
Effects of OC on Health
The association between OC and health outcomes was established using various statistical analysis methods, especially multivariate modeling techniques. These analysis techniques were performed in all the included studies to control for potential confounding factors/covariates. The choices of statistical modeling methods often depend on the study design. For example, logistic regression (Verhaeghe et al. 2006) and linear modeling techniques such as multivariate linear regression (Koukoulaki et al. 2017) and ordinary least square (OLS) regression (Snorradóttir et al. 2013) were the selected techniques conducted in the cross-sectional studies included in this
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Table 4 Main findings reported by the included studies Armstrong-Stassen (2005) Bernstrom and Kjekshus (2015) Carlsson et al. (2017) Cunha and Cooper (2002) Grossi et al. (1999) Hanson et al. (2016) Hansson et al. (2008) Kivimäki et al. (2001a) Kivimäki et al. (2001b)
Category B A
Main findings (+) Health symptoms (+) Long-term sickness
B C B C B A A
Kivimaki et al. (2007) Kjekshus et al. (2014) Koukoulaki et al. (2017) Modrek and Cullen (2013) Netterstrøm et al. (2010) Pahkin et al. (2013) Sablonnière et al. (2012) Snorradóttir et al. (2013) Vaananen et al. (2004) Vaananen et al. (2011) Verhaeghe et al. (2006)
C A C C C C C C B B B
Virtanen et al. (2010) Westerlund et al. (2004a) Westerlund et al. (2004b)
A B B
(+) AL (+) Stress before OC; (+) both in OC group () Most biomarkers and stress scales (+) Prescriptions (+) DHEA-S; sick leaves in study groups (+) Long-term decline in self-rated health (+) Risk of severe musculoskeletal pain and sick leave (+) Prescriptions for OC survivors (+) Long-term sickness absence (+) Work-related stress for some OCC groups (+) Stress in the severe DS group Insignificant results (+) Psychological well-being decreased (+) Psychological distress and burnout (+) Psychological distress in OC group (+) Subjective health decline (+) Psychiatric events (+) Distress in the group perceived OC as threatening (+) Work disability in OC group (+) Some markers increased in different OC groups (+) Increased long-term sickness and hospital admission
Note: (1) The three categories of measures are the following: (A) physical health; (B) physical and mental health; and (C) psychological and mental health. (2) “(+)” a positive association between OC and health outcome was identified
review, whereas Cox proportional hazard models (Vaananen et al. 2011; Virtanen et al. 2010), linear mixed models with repeated measures (Carlsson et al. 2017; Hanson et al. 2016), and two-factors ANOVA (Hansson et al. 2008) were performed to take into account the changes in the outcomes over time. With regard to the main findings (see Table 4), the majority (n ¼ 21, 91.3%) suggested that OC was adversely associated with workers’ health. Of these 21 publications finding an association, 8 studies (38.1%) showed negative effects of OC on both physical and mental health among the study participants, while the other 8 and 5 (23.8%) studies demonstrated that exposure to OC was associated with elevated risks of mental and physical health, respectively. However, one study (Grossi et al. 1999) was in favor of OC, indicating that most of the biomarkers and the Stress Profile subscales reduced post OC, and another one (Netterstrøm et al. 2010) showed
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no significant differences in the incidence of depression between the merger group and the comparison groups. These results are in line with existing literature on the negative effect of OC on employee physical and mental health (particularly when the OC leads to a reduction in workforce). Physically, for example, OC are associated with cardiovascular problems such as high blood pressure, myocardial infarction, coronary heart disease (Fullerton et al. 2020), and musculoskeletal pain such has upper/lower back pain (Østhus 2016). Mentally, uncertainty about the future creates stress and anxiety from the anticipated loss of income (Contreras and Gonzalez 2020; Koukoulaki et al. 2017). Furthermore, multiple factors such as change cynicism, change in job routine, and increased workload can lead to a sense of helplessness and loss of autonomy. Ultimately, these factors all contribute to stress, burnout, and depression (Contreras and Gonzalez 2020). Studies have supported this through reporting an increased use of psychotropic drugs right before workplace downsizing and change in management (Jensen et al. 2019; Kivimaki et al. 2007). The findings of this review are also similar to those of the previous review (Bamberger et al. 2012), in which the authors observed an association between OC and an increased risk of mental health problems based on 64.7% (11 out of 17) of their included studies. However, they further concluded that the overall result found in the review could not provide convincing evidence because the results were extracted based on a large number of cross-sectional studies with high heterogeneity among them. In this sense, the findings of the review discussed in this chapter should be interpreted with caution, given the heterogenous exposure and health outcome measures among the included studies. It should also be highlighted that these findings provided updates to Bamberger and colleagues’ review (2012) as they are based on relatively large longitudinal/cohort studies and a higher percentage (16/18 ¼ 89% in those including mental health) of studies supporting negative effects of OC on mental health in comparison with the previous review (around 65%). These findings also provide additional evidence with a consistent direction of association between OC and impaired physical health and well-being (13/14 ¼ 92.8%). Several studies in this review included job insecurity, work satisfaction, and psychosocial work environment factors as the mediators or covariates in their surveys in an attempt to determine the possible mechanism in explaining the OC and health relationship, given the complex nature of organizational environment. For instance, Kivimäki et al. (2001a) found that the combination of reduced job control, high job insecurity, and increased job demands appeared to be the linking mechanism between downsizing and a decline in self-rated general health. Although the exact mechanisms in describing how the interaction of these factors (and other factors in the psychosocial work environment) mediate the impact of OC on employee health remain unclear, previous research supports that the relationship between OC and ill health is mediated bad employee experience (i.e., job demand, job insecurity). However, mediating effects are out of the scope of this chapter. Future studies are encouraged to investigate the possible roles of mediating variables (Grønstad 2017) in order to better inform workplace health promotion interventions.
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Conclusion and Future Directions
As indicated in the case study and prior epidemiologic reviews, the large heterogeneity in the definitions and measurements of the key workplace exposures and social constructs, as well as health outcomes, remains a major challenge in social epidemiology (Bamberger et al. 2012; Diez Roux 2022;). Standardized measures are needed to explicitly present the dynamic structures in the conceptual models and produce quality-replicable data to establish empirical evidence. Furthermore, a considerable amount of social epidemiologic findings is drawn from observational studies, especially cross-sectional studies. There is a call for more intervention studies and field experiments to facilitate radical changes to improve the health of populations (Bamberger et al. 2012; Berkman et al. 2014). However, randomized experiments may not be practical or feasible in community or workplace settings. Many researchers suggest the use of “natural experiments” to examine the health impacts of policies and interventions targeting social determinants of health in different settings (Craig et al. 2017; Diez Roux 2022). In the workplace, health promotion programs can employ a systems approach that integrates positive organizational change and employee support policies to improve the health and wellbeing of workers. In addition, the theoretical frameworks of social epidemiology were developed incorporating the concepts and knowledge of multiple disciplines. In practice, it is necessary to encourage interdisciplinary collaborations in consolidating analytic approaches and evaluating social and policy actions (Kawachi and Subramanian 2018; Diez Roux 2022). Lastly, as presented in the case study, social epidemiologic evidence in linking social determinants and workers’ health has largely concentrated in Europe and North America (high-income countries). Considering the vulnerability of low- and middle-income countries, future research and resources should be directed toward these countries to allow more balanced representation of empirical data and provide insights into global decision-making and policies for health equity. This chapter has presented current global public health challenges in the context of globalization and associated changes such as rapid technological innovation and increasing interconnectedness worldwide. These challenges have altered the patterns of communicable diseases and noncommunicable diseases, as well as determinants of health. These changes have inevitably reshaped the world of work and workers’ health. The chapter has also demonstrated how organizational change, driven by globalization and technological change, is often seen as a significant threat to employee health. As indicated, social epidemiology provides conceptual frameworks for understanding the ways the interplay of working conditions and social determinants influences workers’ health. The case study using an epidemiological approach at the end of this chapter has summarized the adverse effects of various forms of organizational change on the physical and mental health in the working populations. Finally, this chapter has suggested future directions for advancing social epidemiologic studies to improve population health.
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Cross-References
▶ Climate Change and Infectious Diseases Among Vulnerable Populations ▶ Environment Injustice and Public Health ▶ Global Health ▶ Social Determinants of Health and Global Public Health ▶ Social Justice and Global Public Health ▶ Social Surveys and Public Health
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Global Health Laura Vanderbloemen, Hao Thi My Nguyen, Moleen Maramba, and Dev Kapil
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Significant Events That Have Promoted the Development of Global Public Health . . . . . . 2.1 Infectious Diseases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 International Drugs Trade and Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Occupational Safety and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Transboundary Water and Air Pollution . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Modern Politics and Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 History of Global Public Health as a Concept . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Development of Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 The Introduction of Millennium Development Goals and Sustainable Development Goals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 The “Global” Part of Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Measuring Progress in Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Five Metaphors About Global Health and Global Health Policy: Stopped Here . . . . 5.3 Global Health as Foreign Policy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Global Health as Security . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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L. Vanderbloemen (*) Department of Primary Care and Public Health, Imperial College London, London, UK Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA School of Health, Sport and Bioscience, University of East London, London, UK e-mail: [email protected] H. T. M. Nguyen College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] M. Maramba School of Health, Sport and Bioscience, University of East London, London, UK e-mail: [email protected] D. Kapil National University of Singapore, Institute of Systems Science (NUS-ISS), Singapore, Singapore e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_9
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5.5 Global Health as Charity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6 Global Health as Investment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Global Health as Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Disparities in Service and Access . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Foreign Health Aid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3 Efficacy of Distributing Aid to Regional Areas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.4 What Is Corruption? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.5 Health Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.6 Healthcare Finance and Economics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter aims to provide an overview of the history and key issues in the field of global health, highlighting strategies that are being employed to improve health around the world. It will explore the role of technologies and how their development has impacted on human health, the interplay of international politics over time and ethical considerations that arise in the context of global health interventions, especially foreign aid. Ultimately, this chapter will serve as a summary of where we have been and where we may be headed in the near future, and as a call to action to all those who care about health to work collaboratively toward a world where good health – not just good health care – is a reality for all. Keywords
Global health · Healthcare finance · Public health · Tropical health · Health policy · Public health history · Foreign aid · International health · Health technology
1
Introduction
The field of public health has become important in recent years. Within this field, global health has emerged as a critical area of focus, given the interconnected nature of our world and the widespread impact of health issues across national borders. The need for global health has never been more evident. While significant progress has been made in reducing the burden of disease in many parts of the world, millions of people continue to suffer from preventable and treatable illnesses, and the increased interconnectedness and interdependence of people around the world brings into increased focus our wish for all people to enjoy good health, not just our own families and close neighbors. Health inequalities exist both within and between countries, with marginalized communities and lower-income populations often experiencing the worst health in a given community. Meanwhile, the re-emergence of novel infectious diseases and the threat of pandemics pose a global challenge that requires protection of health, cooperation, and collaboration within and across borders.
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This chapter aims to provide an overview of the history and key issues in the field of global health, highlighting strategies that are being employed to improve health around the world. It will explore the role of technologies and how their development has impacted on human health, the interplay of international politics over time and ethical considerations that arise in the context of global health interventions, especially foreign aid. Ultimately, this chapter will serve as a summary of where we have been and where we may be headed in the near future, and as a call to action to all those who care about health to work collaboratively toward a world where good health – not just good health care – is a reality for all.
2
Significant Events That Have Promoted the Development of Global Public Health
The Industrial Revolution, which took place between 1820 and 1840, was a significant turning point in history with the transition from hand production methods to machine manufacturing. During this period, the world witnessed the invention of practical technological and architectural innovations, such as the steam engine, which allowed for factories to be located beyond the banks of rivers and hydropower. At the same time, the revolution introduced many new challenges, including an unprecedented rise in the human population, sanitation problems in areas where factories were located, the deterioration of living conditions for workers, and the failure of nation-states to resolve these challenges. At the same time, the development of transportation due to the inventions of the steamship (1810) and railway (1830) placed significant pressure on national quarantine systems, paving the way for contagious disease transmission around the world.
2.1
Infectious Diseases
In response to an ongoing cholera epidemic, in 1851, the Government of France pioneered in initiating and organizing the first of 14 International Sanitary Conferences at the time attended by representatives of 12 countries to provide guidelines for controlling the spread of disease, particularly cholera, plague, and yellow fever (Feldbaum et al. 2010). Since governments that participated had previously encountered transboundary disease transmission, quarantine was featured at the center of the discussion. Despite the failure of most of the early conferences to reach agreements about quarantine for fear of disrupting trade and inhibiting freedom of movement, 1851 could be thought of as the year when the first international negotiations on infectious disease and public health took place. At this time, the mode of infectious disease transmission had not yet been widely understood. The period that followed (1851–1938) did ultimately produce significant infectious disease control treaties, and from 1851 to 1951 some of our modern disease control agencies opened in their early forms: the Pan American Sanitary Bureau
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(1902), the International Office of Public Hygiene (1907), the League of Nations’ Health Organization (1923), and the World Health Organization (WHO; 1948).
2.2
International Drugs Trade and Public Health
Recognizing the potential for profit from trading in opium between 1839 and 1942, British forces fought a war with China, and China eventually gave permission to import the opium produced in British colonies, especially India. The subsequent victory in the conflict opened a lucrative trade, resulting in widespread opium addiction in China (Bhopal et al. 2018). Facing this problem, the Chinese government of the time proposed an agreement to end opium trading. The British refused, and this second “Opium War” resulted in more than a million square miles of Chinese territory ceded to Russia in negotiations and 156 years of British administration in Hong Kong, ending in 1997. China was not the only country influenced by the opium trade during this period. Sailing ships further facilitated the development of economic links between Europe, the Americas, Africa, and Asia, enabling the expansion of the opium trade to many countries (Bhopal et al. 2018). The world grew concerned over the social and health harms caused by narcotic drugs in the latter half of the nineteenth century, and the International Opium Commission was convened in 1909 in Shanghai, representing the first international conference to take steps toward global drug inhibition.
2.3
Occupational Safety and Health
The Industrial Revolution of the nineteenth century also resulted in increased awareness about the health of the workforce and their treatment by employers. Lack of job security, work under unsanitary conditions, and long working hours to earn meager wages for living, not to mention exploitation and abuse in the workplace, all became major concerns (Knapp 2000). This phenomenon brought about an effort to set international labor standards to assure workers’ rights and maintain social and economic justice. In 1919, the International Labour Organization, a United Nations agency, was founded to bring attention to these issues and to improve the circumstances of working people (Sheikh et al. 2016).
2.4
Transboundary Water and Air Pollution
During an outbreak of the cholera epidemic, Soho, London, in 1854, witnessed the death of hundreds of people. Facing this problem, John Snow, an English physician, doubted the accuracy of leading hypotheses about the causes of the cholera outbreak. He noticed a relationship between cholera and contaminated water supply using spatial mapping and simple measures of association between potential exposures and
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development of the disease, and from these he proposed a water-based means of cholera transmission (Ruths 2009). As legend relates, soon after the pump was disabled, the incidence of new cholera cases in the area quickly waned (Bhopal et al. 2018). Snow’s findings were some of the first documented in the West to use “observational and spatial” methods in epidemiology, and he has been considered to be the “father of field epidemiology” (Ferrie 2012). Uptake of Snow’s views on the potential for infectious disease transmission via water were slow to take hold, but in part due to his work, later nineteenth- and early twentieth-century water sources were often regulated in Europe and included prohibition of polluting (Birnie et al. 2009). A popular pub house carrying John Snow’s name and his legend still stands nearby in the London neighborhood of Carnaby, Soho, at 39 Broadwick Street. A little later on, in 1939, on another continent, the Trail Smelter Arbitration occurred. In this case, a lead and zinc smelter located in mineral-rich British Columbia (Canada) and owned by the Consolidated Mining and Smelting Company began emitting smoke that crossed the international border with Washington State (in the United States), causing significant damage to forests and crops and distressing nearby residents. Affected landowners complained and demanded that reparations be made. As an agreement between residents and the company could not be amicably reached, the case continued to a tribunal in 1941, thereby highlighting a need for further cooperation in tackling public health threats by establishing principles in environmental laws around transboundary pollution (Kuhn 1938; Wirth 1996). This case also stimulated the development of an important pillar of public health, known as health “protection” (Ghebrewet et al. 2016).
3
Modern Politics and Global Health
As a consequence of the United Nations meeting in 1946, many countries from the north to the south began collaborating, giving birth to the WHO and marking the beginning of dealing with the global health problems in a globally coordinated way. Among the main functions of the WHO include discussions of health equality worldwide, support for developing nations, and the strengthening of national healthcare systems. In the early days of the WHO, the organization focused more on infectious diseases than on primary healthcare provision. After the Cold War, economic factors combined with the demand for health services led to further regulation and monitoring of healthcare practices around the world (Donaldson and Rutter 2017). The Cold War caused many countries to fall into financial difficulties, leading to insufficient payments for domestic health and sanitation activities, causing some of the world’s most severe health delivery problems. The Alma-Ata Declaration was drafted in 1978 as a tool for achieving health care for all and highlighting on the importance of health in world development. Besides reaffirming health as a human right, the Alma-Ata Declaration focuses on health
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equality, the role of health in social-economic development, and the importance of primary health care. Although the manifesto highlighted the importance of health and linked health to economic development, some critiqued the manifesto’s goals as too broad, not specific, and unrealistic. Thus, to work toward achieving health for all, world organizations would need more specific goals and conventions in the coming years. When former colonial powers had, in the past, provided financial subsidies to their former colonies during dire circumstances, these have sometimes been received with contention. With a high likelihood of domestic economies collapsing in developing countries, former colonial powers have been in a position to take advantage of this to create neo-colonies. To assist emerging nations with health problems in a way that would, in theory, be unrelated to politics, many non-government organizations were formed to address medical needs. The birth of the non-government organization (NGO) ushered in an era of investment in health services, which grew rapidly during and after the 1990s via NGOs, large private donations, and foundations. At the same time, highly respected leaders in global public health, such as the late Dr. Paul Farmer, warned against and presaged that these ungoverned organizations could undermine necessary developments in public health at a national level – too big and too costly usually for any NGO or donation to maintain, however charitable. His early concerns about fairness and sustainable development have widened and are now currently important considerations in global health and in developing countries generally.
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History of Global Public Health as a Concept
4.1
Development of Global Health
The term global health increased in popular usage in the 1990s, gaining further prominence rapidly after 2000, when the concept of millennium development goals (MDGs) started gathering momentum worldwide (Holst 2020). Before the popularity of the term global health, many similar terminologies and ideas about health for humanity fit with different periods of world history. Global health could be thought of as having started during the colonial period of history as “tropical health.” A recent notable reanalysis of the origins of the field of epidemiology by historian Jim Downs (Maladies of Empire, 2021) views epidemiology itself as having grown up as a result not of brilliant social and health analyses by the likes of the legendary John Snow but more as a science aiming to protect colonial investments, including those involving human slavery (Downs 2021). This is a relatively new interpretation of the history of epidemiology and therefore of global health that warrants attention and further discussion, especially when any human population is considered from a top-down, profit-oriented perspective as has been done in recent years during the COVID-19 pandemic.
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During the nineteenth century, the study of tropical health became a trend in colonial regions worldwide. Universities initiated research programs in epidemiology in the colonies, thereby demonstrating an interest in protecting health, whatever the motivation. “Tropical health,” though, faded in prominence as it did not solve global issues and because all regions, not just the tropics, proved to require public health strategies that worked well in any increasingly interrelated and equalityfocused world. After tropical health, international health became a popular term, especially in the United States (Holst 2020). The rapid development of economies and trade also caused epidemics to extend beyond regions to become more international in nature. Trading activities became a bridge to spread diseases to different countries and territories, and it is difficult to control an epidemic internationally without collaboration.
4.2
The Introduction of Millennium Development Goals and Sustainable Development Goals
4.2.1 Millennium Development Goals and Global Health (2000–2015) The MDGs were earmarked and agreed to by the United Nations to be achieved by 2015 (WHO 2018). They were created in an attempt to combat extreme poverty by halving it, to stop HIV from spreading, and to make primary education universally accessible to all (United Nations 2015). The following table shows an excerpt of the health-related MDGs 2015: Rwanda performance and contributing factors (Abbott et al. 2017). Millennium development goal Goal 4: Reduce child mortality
Goal 5: Improve maternal health
Target Reduce by two thirds between 1990 and 2015, the under-five mortality rate
Reduce by three quarters, between 1990 and 2015, the maternal mortality ratio Achieve, by 2015, universal access to reproductive health
Progress on specific indicators Under 5 mortality decreased by 47% to date (in 2012, 6.6 million children under 5 died; majority of deaths occur in world’s poorest regions) Neonatal mortality has fallen by a third, but proportion of deaths in first 28 days of life has increased Proportion of children covered by one dose of measles vaccine increased from 72% to 84% (from 2000 to 2009); no change past few years. Globally 21.2 million infants unvaccinated in 2012 Maternal mortality ratio fell by 45% between 1990 (380 deaths per 100,000 live births) and 2012 (210 deaths per 100,000 LB). Proportion of deliveries attended by (continued)
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Goal 6: Combat HIV/AIDS, malaria, and other diseases
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Have halted by 2015 and begun to reverse the spread of HIV/AIDS Achieve, by 2010, universal access to treatment for HIV/AIDS for all those who need it Have halted by 2015 and begun to reverse the incidence of malaria and other major diseases
Progress on specific indicators skilled health workers increased from 56% to 68% in developing countries 83% of women in developing countries who see a health worker once in pregnancy increased to 83%, but only 52% have the 4 recommended visits Births to adolescent girls have declined – e.g., from 88 to 50 births per 1000 girls in South Asia, but still 117 births per 1000 girls in sub-Saharan Africa, and 76 in Latin America/Caribbean Unmet need for family planning declined from 17% to 12% Number of new HIV infections (adults) declined 38% between 2001 and 2013 In sub-Saharan Africa, 39% young men and 28% young women (aged 15–24 years) have comprehensive knowledge of HIV 12.9 million people globally received anti-retrovirals in 2013. Malaria mortality declined 429% between 2000 and 2012 87% of 6.1 million newly diagnosed TB patients received therapy
Sustainable Development Goals (SDGs) and Global Health (2015–2030) In a collaborative venture with governments, international agencies, and other civic groups, the United Nations committed to stimulating prosperity by agreeing upon strategies to promote economic growth and redress global inequalities in education, health, social welfare, and job markets. A major focus was also aimed at galvanizing momentum in tackling climate change. As a result of these efforts, the 17 Sustainable Development Goals (SDGs) could be seen as an evolution of the MDGs, intended to serve as a more sustainable roadmap to ending poverty, protecting the planet, and ensuring peace and prosperity for all people. The goals are interconnected and cover a range of areas, including ending poverty and hunger, promoting sustainable agriculture and clean energy, reducing inequality, ensuring access to quality education and health care, and promoting gender equality and inclusive economic growth (Bhopal et al. 2018).
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The “Global” Part of Global Health
5.1
Measuring Progress in Global Health
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One of the first things that is needed is to agree on what to measure and how to ensure these are comparable across all the nations and population groups of the world so that there will be a fair and standard way of measuring progress, or a lack of it, in any given community. In public health, these are commonly known as “outcomes.” A few key “outcome” measures of global public health around the world (Hyder et al. 2012) are described here.
5.1.1 Life Expectancy Life expectancy is one of the world’s most commonly reported health outcomes. It estimates a number of years that a person will live, based on mortality rates at the time of that person’s birth. Data are available on various international agency websites or dashboards to show each country’s metrics, often in the form of league tables to highlight countries with the highest and lowest life expectancies. Wars, famine, and disease burden can cause these to stagnate or decline, but for most of this century, in most countries, life expectancy has generally continued to rise. 5.1.2 Child Mortality Child mortality is an estimate of the probability that a child will not live beyond the age of 5 years, based on mortality rates at the time and place of his or her birth. An analysis of mortality for children provides essential information regarding aggregate health in a country because critical health-related challenges characterize the first years of life. Consequently, life expectancy increases substantially conditional on surviving the first years of life. Indeed, an essential part of a nation’s gains in life expectancy at birth is precisely due to significant reductions in child mortality. 5.1.3 Burden of Disease Burden of disease metrics are used to assess the detrimental impact of each known disease and the associated risk factors. These data are collated on disease incidence, how it distributes within populations, and the way it trends (Merrill 2019). The cumulative disease burden is the total of its mortality and disability.
5.2
Five Metaphors About Global Health and Global Health Policy: Stopped Here
Policymakers use metaphors to comprehend complex policy trade-offs based on a few consistent strategies and principles (Lau and Schlesinger 2005). Five leading “metaphors” in global health have been identified by Stuckler and McKee (2008)
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from the London School of Hygiene and Tropical Medicine, namely, global health as foreign policy, global health as security, global health as charity, global health as investment, and finally global health as public health. These metaphors help public health researchers to understand this emerging area and to have clarity about the motivations behind the activities and initiatives of donors and nations that engage in global health work around the world (Stuckler and McKee 2008).
5.3
Global Health as Foreign Policy
The relationship between global health and foreign policy could be said to be based on four primary components: aid, trade, diplomacy, and national security (Feldbaum et al. 2010). For example, politicians may use global health policies as a tool to exert political influence or to create a positive worldwide reputation. States can, for example, forge alliances with countries with strategic interests to open markets for trade (Stuckler and McKee 2008).
5.4
Global Health as Security
Global health policy also pays great attention to protecting citizens against the threat of communicable diseases, such as severe acute respiratory syndrome (SARS), influenza, multi-drug resistant tuberculosis (MDR-TB), and schistosomiasis (Stuckler and McKee 2008). In many cases, they are diseases of emerging economies that pose a potential threat to the population of rich countries, but since COVID-19, this has of course changed. According to the WHO, health security has been placed at the center of national security, particularly implementing plans to prevent the transmission of diseases at borders, for instance, through epidemic control measures (Fidler 2001).
5.5
Global Health as Charity
Charity in global health aims to provide global citizens with an equal opportunity to thrive regardless of their socio-economic status. Global health as charity’s aim is typically to save and improve the living conditions of people worldwide by focusing on preventing and treating treatable diseases for a maximum number of people (Syntia Munung et al. 2022). Given the often limited reach of charitable funds, it is necessary to have clear criteria in prioritizing those who receive this welfare to ensure fairness. Typically, mothers and children with issues of malnutrition, safe childbirth, and infectious diseases are prioritized (Stuckler and McKee 2008).
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Global Health as Investment
According to the WHO’s Commission on Macroeconomics and Health, global health can be considered an investment, using health to maximize national economic development. The main focus of this goal is on young and working-age citizens, hence the importance of focusing on diseases such as AIDS, tuberculosis, and malaria, which can act as a roadblock to national economic development.
6
Global Health as Public Health
The last global health metaphor proposed by Stuckler and McKee (2008) emphasizes the importance of international efforts in tackling risk factors to reduce the worldwide disease burden. In this conception of global health as public health, continuous efforts are made to ensure that no communities are marginalized who have unique health needs. Public health is based on societal actions that aim to deliver better health outcomes and prolong life expectancy, and to do so for minority populations in equal measure as for larger populations (Liamputtong and Rice 2022).
6.1
Disparities in Service and Access
Developing countries encounter many challenges that impede them from providing their citizens with the most advanced healthcare systems, including a lack of trained health workers to provide a basic level of medical care as well as disease prevention and inadequate monetary resources to construct modern public health facilities and infrastructures (Stapleton et al. 2014). The “brain drain” phenomenon has exacerbated these significant differences between developed and developing countries. Brain drain in health care is when the under-remunerated and frustrated healthcare workers foresee the weakened healthcare system and accept recruitment offers to work in wealthier countries, which potentially provide them with high-quality living standards, better access to advanced technology, higher earnings, and more stable political conditions (Misau et al. 2010). The consequence of this phenomenon is a shortage of human resources in health care and, thus, a weakening of the healthcare system generally. Therefore, on the one hand, governments in low-income countries invest in training healthcare workers with no value added in the long run. On the other hand, it is high-income countries who reap all the benefits as they have pre-trained healthcare workers being recruited into the services, with huge savings made on training homegrown health personnel.
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Foreign Health Aid
There is a growing recognition of China as a global health donor, especially in Africa, with more than 200 health, population, water, and sanitation (HPWS) projects reportedly undertaken during the years from 2000 to 2012 (Daly et al. 2020; Grépin et al. 2014; Lin et al. 2016). These projects typically involve transferring lessons learned from Chinese domestic successes, for instance, malaria control and prevention, sending its medical teams to malaria-endemic countries, providing essential equipment and drugs, and building healthcare infrastructures (Grépin et al. 2014; McDade and Mao 2020). Since 2013, the Chinese government has increased its external investments through the Belt and Road Initiative, formally known as One Belt One Road, China’s infrastructure development strategy to connect China with the other six main economic corridors of Asia and Africa. These “high-standard free trade areas” are expected to foster regional cultural exchanges through extensive international cooperation in various fields, including health care and traditional Chinese medicine (Daly et al. 2020; Organisation for Economic Co-operation and Development [OECD], 2018). To shed light on conflicting opinions regarding the motivational value of these investments, a qualitative interview has been conducted with local African and Chinese participants living in Tanzania and Malawi. They were broadly supportive and appreciated health aid from China. However, they shared common concerns about communication barriers and a limited understanding of priorities and expectations (Daly et al. 2020). Health aid from developed to developing countries can be a gesture of goodwill to foster equity in providing health care worldwide, as concerns over the spread of disease due to globalization increase (Afridi and Ventelou 2013; Twumasi 1981). Despite the meaningful message of this gesture: lending a hand to developing countries in escaping the poverty trap, the efficacy of international health aid requires further attention and scrutiny.
6.3
Efficacy of Distributing Aid to Regional Areas
Firstly, it is crucial to understand three concepts: bilateral, multilateral, and bi-/ multilateral aid (Spicer et al. 2020). Bilateral is generally government-to-government aid, multilateral aid is generally government-to-local agency aid, and bi-/ multilateral aid is generally from a donor agency to a government or local agency. There are also many other public and private ways in which aid can be delivered, some of which are difficult to monitor and track. In health care, foreign aid includes construction of health facilities, training healthcare workers, providing opportunities for exchanges and cooperation, dispatching medical teams, and facilitating medicines and the provision of medical equipment (Grépin et al. 2014). The procedures and processes in monitoring the quality and appropriate use of the foreign aid and donations are complex jobs for donors. Equally, selection of the
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deserving recipient governments is also a convoluted process, as there is need for the recipients to demonstrate “good governance” and low level of corruption in the process through to the distribution of aid to intended recipients locally (Ali et al. 2019). As an example of the complexities involved in global health aid, the Economist reported in 2016 about a case of aid gone wrong in Malawi. Of $1.17 billion in aid to Malawi in 2012, around $300 million went missing, misappropriated from the treasury, resulting in non-delivery to 17 million impoverished people living with HIV/AIDS (The Economist 2016). Health aid to developing countries is an essential source of public health funding. In low- to medium-income countries, health aid is a vital lifeline for public-funded health institutions and care services. In the case of Malawi, in the year of the scandal, foreign aid accounted for 28% of Malawi’s gross national income. The concept became popular and increased significantly after the World Wars, following concerns over the spread of disease due to globalization. Health aid also increased in the early to mid-1980s following the AIDS/HIV epidemic in sub-Saharan Africa. However, there is skepticism among those who believe that gifting to impoverished nations is disruptive to courses of development as it causes dependence on aid, and in many cases, the assistance fails to reach its recipients (Ali et al. 2019).
6.4
What Is Corruption?
Corruption is defined as the misuse of official authority for personal interest (Rodriguez et al. 2005), which raises questions about allocating aid to regional areas and whether global health aid is received as intended by donors. Poor governance of funds from recipient countries could lead to a failure to promote development and infrastructure and reduce the available funds (Botero-Rodríguez et al. 2022).
6.5
Health Ethics
Ethical standards are a set of acceptable rules that provide guidance on how humans interact in formal of professional environments (Bedeker et al. 2022). Although most ethical theories, principles, and concepts are universal, they tend to vary in the way they are applied in different cultures, religions, and geographical locations. For instance, the widely condemned practice of female genital mutilation may still be acceptable and upheld in certain social groups, specific religions, and cultural beliefs. Some may argue that condemning this practice as a human rights violation may constitute a form of ethical imperialism. Others strongly support women and children who face the risk of being harmed through female genital mutilation. Another example is in Europe, where euthanasia is legal in Switzerland as the ethical belief is that it is for the greater good, whereas in the United Kingdom, assisting someone in terminating his or her life is a criminal offense. Global health ethics were
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borne out of the need to develop practices to harmonize moral values when dealing with health issues that need coordinated action plans at a global level (Stapleton et al. 2014).
6.6
Healthcare Finance and Economics
Financing is a core determinant of how healthcare systems are modeled and delivered to the public. Healthcare finance is made up of three fundamentals, which are finance generation and collection, funding distribution (including how service providers are remunerated), and subsidization (Donaldson and Rutter 2017). In most countries, governments allocate tax-funded spending toward health care. The following are various funding structures for raising revenue for healthcare finance: outof-pocket expenditure, voluntary health insurance, government spending, NGOs, and private corporations. In global health, measures of consumption and health-related services and care are systematically evaluated as health spending. The amount of resources invested or spent on individual health care per person varies in each country (OECD 2021). In some countries, health systems are market-driven with private organizations heavily invested in providing services with minimal involvement by the state except for regulating and licensing these providers. In most low-income countries, the health systems may deliver basic care due to a lack of government commitment toward healthcare finance. In many cases, there will be an alternative out-of-pocket funded health system, which may not be affordable to low-income communities. In the United Kingdom, a unique and universally tax-funded health system, which is accessible to all called the National Health System (NHS), has been in operation since the close of the Second World War. Most other high-income countries have a mixture of publicly and privately financed health care. No healthcare finance system is failproof due to various factors such as changing political trends, public attitudes, and levels of disease burden.
7
Conclusion and Future Directions
Global health addresses the health issues that affect populations around the world. It involves interdisciplinary collaboration, research, policy-making, and advocacy to improve the health of people worldwide. An ongoing challenge in the field of global health is unequal access to health care and resources. To address these issues sufficiently, further strengthening of social, economic, and healthcare systems will be needed. The more we become socially connected, the more we can see how much further work needs to be done. Another challenge is the re-emergence and spread of new infectious diseases, e.g., COVID-19. The global response to COVID-19 has highlighted the importance of global coordination in response to pandemics. It has also highlighted weaknesses
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in our ability to address future health emergencies, including those not directly related to infection or disease, such as climate change. Global health efforts could further take into account the social determinants of health, factors that contribute significantly to health outcomes. In addition, efforts to promote health can be better tailored to the specific cultural, social, and economic contexts of the people they aim to serve. Global health is a complex and challenging field that requires collaboration and innovative approaches to improve health outcomes worldwide. Tackling global health challenges will be a worthwhile area of both work and study in the future as we work toward a healthier and more peaceful world.
8
Cross-References
▶ Gender Theory and Global Public Health ▶ Human Rights and Global Public Health ▶ Social Determinants of Health and Global Public Health ▶ Social Justice and Global Public Health ▶ Theories of Practice and Global Public Health
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Critical Public Health Heath Pillen
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 What Is “Critical” About Critical Public Health? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 What Principles and Values Constitute a Critical Public Health? . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Why Might One Want to Be Critical About Public Health? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 How Might One Come to Be Critical About Public Health? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Where Can a Critical Public Health Be Found? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
A critical public health has developed from our propensity, as public health researchers and practitioners, to question the status quo of public health knowledge and practice. In building upon and sharpening this propensity toward critique, a critical public health works to bring together insights and techniques from a critical social science to support a broader aim of promoting health equity, which it does by engaging with matters of power and the politics of health. Addressing public health researchers and practitioners, and social scientists who wish to work alongside those in public health, this chapter provides the reader with an orientation to the assemblage of values, theories, and practices that constitute a critical public health. In doing so, it responds to key questions frequently posed by newcomers to the field, including what precisely is meant by being “critical” within a critical public health, why might one want to be critical of public health, how might one be critical about public health, and where can critically oriented public health communities be found? This chapter responds to these questions and in doing so provides the reader with a foundation for H. Pillen (*) University of the Sunshine Coast, Sippy Downs, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_10
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developing their own critique of public health knowledge and practice, should they choose to do so. Keywords
Health equity · Critical social science · Politics of health · Social critique · Public health · Critical consciousness · Reflexivity · Publics
1
Introduction
Stripped back to its core, a critical public health speaks to our propensity to question the status quo of public health knowledge and practice. As Green and Labonté (2008, p. 10) suggest, a critical approach “resembles the childlike endless querying of each stated fact, ‘But why?’” While this chapter will elaborate on the ideas and practices that constitute a critical public health, it may be helpful to start by asking yourself the following questions, which are questions that have spurred on the development of a critical public health as it is known today: • • • •
What is meant by health? What determines health? How should the public’s health be promoted and protected? Who decides these things?
In asking these questions, readers might find it difficult to imagine alternatives to the status quo. Why do you think this is so? A critical public health responds to this difficulty of imagining alternative ways of knowing about public health. It overcomes this difficulty by offering us theoretical and cognitive tools to help us recognize that our approach to public health is embedded in social systems that privilege or otherwise marginalize certain knowledges about health and its promotion or protection. These tools, which are shaped by theoretical perspectives within a critical social science and the practice of social critique, are directive in the sense that they make prominent the relationship between social inequality and health (i.e., health inequity), the processes by which health inequities are maintained through existing social arrangements or institutions, and the processes by which such arrangements are maintained through dominant medical and scientific knowledges (Schrecker 2022). In other words, a critical public health “not only probes continuously deeper; it is fundamentally concerned with the social practices of power and how these practices (political, economic, engendered, cultural) work to stratify individuals into hierarchies, and so stratify their risk, vulnerability and access to resources for health” (Green and Labonté 2008, p. 10). At the same time, a critical public health must maintain an internal critique of its own discourses and practices and how these things might (or fail to) work productively to achieve health equity. But moving beyond a scholarship of critique, a critical public health also seeks to offer an alternative vision for the future of public health and
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public health practice. Given the challenges in identifying alternatives to the status quo, the lack of such a vision risks creating frustrated public health researchers and practitioners who “are clearer about what they oppose than they are about alternative and better futures” (Scambler 2018, p. 160). A critical public health has much to offer the practice and aims of global health (Koplan et al. 2009). Firstly, both approaches share health equity as a major objective while recognizing that health equity, within and between countries, is often shaped by processes that transcend national boundaries. While traditional approaches to public health have contributed to significant improvements in global health status, most notably in relation to the control of infectious disease and improvements in child health, traditional public health approaches have had limited impact on reducing health inequities between and within countries (Beaglehole and Bonita 2008). With its foundations in a critical social science, a critical public health provides theoretical frameworks for understanding how public health might interact with globalized political and economic processes that produce health inequities. Secondly, a critical public health seeks to approach global health in a culturally safe manner, cognizant of the imperializing potential of public health practice (Adams et al. 2019) and how this might override local mechanisms for managing health and illness with risk cultures that may contribute to the production of new (stigmatized) identities and statuses (Hannem 2012, p. 23). Thirdly, and very relevant to the aims of the present book, a critical public health is interdisciplinary, seeking dialogue between public health and critical social scientists that both contribute to the practical aims of public health (in relation to reducing health inequities and minimizing the harmful effects of public health practice) and contribute to critical social science scholarship (Mykhalovskiy et al. 2019). This brief overview of a critical public health is likely to raise its own questions. What precisely is “critical” about a critical public health, why might one want to be critical about public health, how might one be critical about public health, and where can critically public health communities be found? This chapter responds to these questions and in doing so provides readers with a foundation for developing their own critique of public health knowledge and practice, should they choose to do so. It is the hope of the author that readers will use the different ideas presented within this chapter to start to question their own public health or social science practice and think about how they might integrate critical social science perspectives with public health teaching, learning, and practice. The author would also encourage readers to question the ideas presented within and challenge them to identify new interpretations and directions for a critical public health as they read.
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What Is “Critical” About Critical Public Health?
While the word “critical” in public health and the health sciences frequently refers to critical thinking and its application to the judicious interpretation and use of scientific evidence (Rowles et al. 2013), “critical” within a critical public health refers to a critical social science. A critical social science assumes that “practices [informed by
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relations of domination] may themselves be informed by false ideas” (Sayer 2009, p. 769), requiring a critique that extends beyond the practice itself and toward the ideas that inform that practice. Doing this requires individuals to locate their perceptions of the world within social, political, and historical contexts (Harvey 2022). Ultimately, such a task is directed toward what Sayer (2009, p. 769) refers to as “the reduction of illusion in society itself.” This idea around the reduction of illusion can be observed in a language of “unmasking,” “unsettling,” or “dislocation” used by those writing from critical social science perspectives (Fook and Gardner 2007; Hammond 2018, p. 6). Facilitating this reduction in illusion is the practice of (explanatory) critique, which enables individuals to see reality in a different light and detach ourselves from dominant social and political discourses (Hammond 2018, p. 6). While the practice of critique will be discussed later in this chapter, it is through critique that this chapter attempts to explain why these false beliefs are held (Sayer 2009). To help ground these abstract ideas, it can be helpful to examine how such ideas have informed development of a key journal in the field of critical public health, that is, the journal Radical Community Medicine (first published in 1979) and its successor Critical Public Health. While the history of a critical public health pre-dates this journal, evident, for example, in Rudolf Virchow’s social medicine in mid-nineteenth century Prussia (Adams et al. 2019), the journal has staked its claim as “being at the ‘cutting edge’ of critical thinking in public health” (Bunton and Wills 2004, p. 79). In his reflection on motivations for development of the journal, inaugural editor Alex Scott-Samuel (1998, p. 9) notes how the journal had emerged from the experiences of a group of trainee public health doctors in the UK, whose attempts to advocate for the politics of public health were met with “ignorance and indifference” from “techno-bureaucratic” healthcare planners and managers. In early issues, the journal addressed social issues of poverty, inequality, racism, sexism, housing and urban health care, and primary health care but also directed critique toward the foundations of public health science, namely, orthodox epidemiology and its dominance within public health (Scott-samuel 1998). Thus, this work was both a response to the “blindness” of public health to social, economic, and political determinants of health, and a critique of the way that this blindness was maintained by the dominance of biomedical and orthodox epidemiological understandings of health and its determinants (Bunton and Wills 2004, p. 79). A critical public health has drawn on various social theories to help readers imagine their own public health practice as being intimately tied to social and political life, helping them to look beyond and question the orthodoxy of public health knowledge and practice. Key theories relate to processes of medicalization, structural determinants of health, matters of risk, surveillance, and governance, and the promotion of healthy lifestyles (Nettleton and Bunton 1995; Schrecker 2022). From the perspective of a critical public health, such theories shed light on both the social and political processes by which health (and public health practice) is produced and explain why individuals’ consciousness of underlying social and political processes might be obscured. Taking the public health issue of obesity as an
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example, it is possible to use such theories to explain how obesity has emerged and is maintained as a social problem. By its very definition, obesity is a consequence of the medicalization of fatness, which functions to bring fatness under the jurisdiction of the medical professions while establishing medicalized ways of thinking about and conceptualizing fatness. While sociological research acknowledges that a rising prevalence of obesity has resulted from changes in the structure of work, social mobility, and suburbanization, thus presenting different opportunities to enact healthy lifestyles among those of differing socioeconomic status, ethnicity, gender, and neighborhood deprivation (Banwell et al. 2012), medicalization functions to individualize the causes of obesity (Monaghan 2017). Such arrangements are typically maintained via discourses and practices relating to risk, where expert (medical) knowledges, normalization of body and behavior, and self-governance are used as strategies for governing risky bodies (Lupton 2013; Wright and Harwood 2008). Discourses around obesity also emerge from and re-produce certain class-based interests, favoring those with the dispositions and forms of capital required to enact healthy lifestyles given medical understandings of health risks (Warin et al. 2015). Therefore, the use of social theory enables researchers to explain how processes of social control and social stratification (i.e., processes relating to social and political life) shape the consciousness of “obesity” as a public health problem. While the discussion so far has provided a brief overview of the theoretical foundations for a critical public health, a critical public health is also guided by a number of principles and values that shape its practical mission within public health. While a critical public health is grounded in critique, it is also responsible for producing new ways of working so to produce equitable improvements in health. It is insufficient to stop at critique, which runs the risk of creating an increasingly negative view of public health as a site of normative power (Mykhalovskiy et al. 2019, p. 526). In seeking to transform public health practice, a critical public health has coalesced around several principles and values, which we now turn to.
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What Principles and Values Constitute a Critical Public Health?
In attempting to develop a concise list of key principles that underpin a critical public health, this chapter will offer a synthesis of a number of editorials, commentaries, and other texts that provide explicit reflections on the practice of and directions for a critical public health (Bunton 1998; Bunton and Wills 2004; Crawshaw 2007; Green 2006; Green and Labonté 2008; Mykhalovskiy et al. 2019; Schrecker 2022). While these principles can and should be debated, they do offer an overview of the value structure of a critical public health. These principles form the foundation for shared beliefs and forms of reasoning that are communicated by those practicing within a critical public health, and therefore, there is benefit in clarifying precisely what these principles are. While there are areas of overlap between principles within a critical public health, and those found within a new public health and health promotion, a
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critical public health can be differentiated from these areas given the centrality of critique, which it applies to these public health paradigms among others. Briefly stated, key principles within a critical public health include the following: A commitment to health equity and social justice, locating health inequities in historical and contemporary social, economic, and political arrangements and institutions. Health equity recognizes that an individual’s health-related choices are both informed and constrained or enabled by the position they occupy within social hierarchies organized according to divisions such as class, gender, ethnicity, and (dis)ability. Critically, because the stratification of society has its roots in political and economic arrangements (Scambler 2018), a critical public health demands that changes in these arrangements are required so to minimize social inequality and provide equal opportunities for health (Green and Labonté 2008). A commitment to revealing discourses and practices that obfuscate the production of these health inequalities, particularly through the global rise of a neoliberal political ideology and the global spread of biomedicine and medicalization. As the former example of obesity has demonstrated, a critical public health recognizes that the social and political processes that shape health are typically obscured from human consciousness. Consistent with the aims of a critical social science (Harvey 2022; Sayer 2009), a critical public health seeks to explain how and why such processes are obscured from public consciousness. As the social disability movement has demonstrated, this is not merely an academic exercise but rather the act of “destabilizing the present” functions purposively to bring “the [alternative] future into view” (Beckett and Campbell 2015, p. 272). A commitment to developing and learning from a participative health democracy. This reminds us that a critical public health is fundamentally reflexive about publics and how public health and nonprofessional publics often fail to see eye to eye. While there are various ways to understand (health) democracy, a critical perspective would seek out democratization as an ongoing process in which marginalized voices are articulated and deliberants work to problematize their representation of certain (health) issues, with this problematization then used to create alternative discourses (Giroux 2004; Steinberg and Kincheloe 2010). Practically, this can be achieved through forms of public deliberation, involving an informed and dialogical exchange of ideas that seeks to promote a sense of “dislocation,” which helps “defamiliarize the familiar” and help “individuals see the existing reality in a different light” (Hammond 2018, p. 6). A commitment to a critical praxis. Reflecting various disciplinary meanings of the term “praxis”, a critical public health emphasizes the importance of iterative movements between theory and practice (Crawshaw 2007) but also calls for an engaged practice that “engages with structures of power to challenge as well as describe them” (Green and Labonté 2008, p. 4). Importance is, thus, placed on social action and change as an appropriate response to social critique. This has been interpreted as a “taking of sides” (Green and Labonté 2008, p. 4; Schrecker
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2022, p. 139), reflecting the way that those within a critical public health integrate technical and normative concerns in seeking improvements in health equity. A commitment to an internal or self-critique of public health knowledge and practice, drawing from understandings brought together through multiple health and social science disciplines. This uncomfortable self-critique keeps check on a transformed public health practice, helping to anticipate the potential social benefits and costs/harms that might result from public health action (Green and Labonté 2008). To achieve this, there is broad consensus that a reflexive engagement with public health practice requires a bringing together of different theoretical understandings and techniques located within multiple health and social scientific disciplines (Bunton and Wills 2004; Crawshaw 2007; Mykhalovskiy et al. 2019). In highlighting the importance of self-critique in navigating the potential benefits and costs of public health action, it is also worthwhile examining in more detail the potential benefits and costs associated with thinking critically about public health. This raises important questions of why one might want to be critical about public health, and whether the exercise in criticality is worthwhile, either for the public health profession or the individuals involved.
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Why Might One Want to Be Critical About Public Health?
There are two key benefits that a critical public health might bring in relation to global health: addressing health inequities and mitigating the social harms that public health practices might have on local cultural understandings of health and illness. Global malnutrition prevention efforts provide a helpful case study for thinking about how a global health issue might engage with the politics surrounding health equity but also the limits in doing so. In developing a politically engaged public health agenda, malnutrition prevention efforts have involved the development of conceptual and analytical frameworks that incorporate policy processes, have employed strategic framing of public health evidence so to force political action, and have focused on providing leadership across professional boundaries and disciplines at a global level (Gillespie et al. 2013). An important component of malnutrition prevention work has been the widespread adoption and use of the Scaling Up Nutrition (SUN) checklist, which incorporates principles of equity, human rights, and public participation (Coile et al. 2021). To date, there is promising evidence to suggest that such a coordinated political effort across national boundaries is resulting in improvements in population measures of malnutrition (Gillespie et al. 2013) or nutrition-related national infrastructure (Coile et al. 2021) across several countries. Given these observations, it would appear that a critical public health may have achieved its aim of supporting a politically engaged global practice. Even in the midst of such promising movements, however, criticism has been directed toward the way that malnutrition prevention policy has facilitated a privileging of technological and commodified solutions, following on from more
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medicalized understandings of malnutrition (Scrinis 2020). In his analysis, Scrinis (2020) offers a timely critique of the need to maintain vigilance against a narrowing of focus within global public health programs. At this point, readers may have identified one of the key dangers of a critical approach, that it can generate friction when held up against selective or disease-focused primary health-care approaches, or even worse, be (mis)interpreted as hostile toward orthodox medicine itself. Such challenges to medical orthodoxy have received strong rebukes in the past, evident with Ivan Illich’s provocative book Medical Nemesis, in which he outlines the (iatrogenic) social and cultural harms inflicted by medicine in recent history (O’Mahony 2016). While Illich’s work has been heavily criticized, it has also sparked those within medicine and public health to consider the potential limits and dangers of their profession. On a more individual note, the critique of public health knowledge and practice can at times feel disorienting, uncomfortable, or even distressing (Rondini 2015). Take for example the hypothetical case of a health promotion practitioner, who may see their practice as a response to the limits of health education and a vehicle for achieving a utopian “health for all.” Having invested their professional identity in this ideal, it may be highly unsettling to realize that they themselves are “enmeshed in power relations” (Petersen 1996) and may have unintentionally contributed to victim blaming, the construction of risk identities and stigmatization, and the promotion of unattainable lifestyles (Frohlich et al. 2012; Warin et al. 2017). Rather than seeing this disorientation or discomfort as an adverse effect of consciousness raising and thus something that should be minimized, such disorientation can be seen as an important element that spurs on the process of critique and a closer engagement with a critical public health. This leads on to the next question that readers might pose: How might one come to be critical about public health?
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How Might One Come to Be Critical About Public Health?
While those approaching public health from a critical social science might already have the theoretical tools to engage with a critical public health, those in the health sciences or newcomers to the discipline of public health are likely to require support in the development of critique. After all, our understanding of the mechanisms that drive health inequities can rarely be “mapped or ‘read off’ via experience” (Scambler 2006, p. 274). Within this section, the chapter will offer a synthesis of several theoretical perspectives on how individuals might form critical projects through internal and collective conversations. There are a group of theories and models of learning that have been used in comparable ways to describe how individuals might develop a critical interpretative framework (Pillen et al. 2020). For O’Neill (2015, p. 626); such learning involves the “intentional cultivation of self-awareness in context that attends to the dynamics of power in relationships and the structural environment invoking action toward social justice.” This learning definition is relevant to a critical public health given its intention to develop forms of consciousness derived from reflection on oneself
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within one’s social context, its focus on the exercise of power as the focus of this self-reflection, its recognition that some are advantaged and disadvantaged because of this arrangement, and a future orientation toward reducing social inequality. These theories of learning are constructivist and experiential in orientation, assuming that learning occurs in a reflexive manner within complex real-life environments, involving interaction with others who expose the learner to multiple ways of knowing (Narayan et al. 2013). Drawing from a systematic search and qualitative synthesis of such critical theories and models of learning (Pillen et al. 2020), such a critical consciousness is facilitated through a combination of the following exposures and inter-related learning processes: Priming of critique. This point recognizes that certain conditions make it more likely that an individual’s exposure to a disorienting event or stimulus might provoke a deeper or more perseverant consideration of the event. Such conditions may include a history of exposure to marginalization or disadvantage, or the exposure to systems of belief (whether formally adopted or not) related to social justice. Such priming is apparent among medical students from disadvantaged backgrounds, who have been shown to possess the strongest sociological gazes and insights into social health improvements (Whittenbury 2021). The lesson here for the reader is to draw on one’s own experiences of marginalization or disadvantage as a resource for social critique and/or to immerse themselves in the accounts of those occupying marginal positions in society. Exposure to disorienting information or event. As alluded to in the previous section, certain information may provoke a challenge to conventional or taken-for-granted knowledge, contributing to a sense of disorientation or disequilibrium. With roots in the cognitive constructivism of Piaget (Narayan et al. 2013) and closely aligned with Mezirow’s transformative learning theory (Mezirow 1997), the experience of disorientation motivates individuals to seek to use this new information to reevaluate existing frames of reference that are used to make sense of and order experience. Many socially critical approaches to education use disorienting information to drive learning, such as is the case with Fook and Gardner’s (2007) use of critical incidents within their Model of Critical Reflection for Professional Practice. Introspection and reflexivity. While this may superficially involve a self-examination of thoughts and emotions in response to a state of disorientation, a more critical introspection involves an inner dialogue about the relationship between personal concerns and motivations, and social circumstances. It is this self-in-society inner dialogue that characterizes Margaret Archer’s (2007) theorizing of human reflexivity. For Archer, human agents are firstly confronted with ontologically real material-structural and cultural properties of the social world, which possess generative powers to constrain or enable certain forms of thought and behavior. Reflexivity then are the internal psychological processes where agents are able to form personal projects in response to these antecedent conditions (Archer 2007). Drawing on Archer’s notion of reflexivity, Scambler (2013, pp. 307–308) suggests that critical projects are likely to be entertained by a group of dedicated meta-reflexives, who are those that “stick their necks out and contest growing inequality” as a consequence of being “value” and “other” oriented. Revising frames of reference. Corroborating Sayers’ (2009) claim that a critical social science involves the reduction of illusion in society, the revision of existing frames of reference requires the learner to firstly unsettle or destabilize these taken-for-granted frames of reference (Fook and Gardner 2007). This requires the learner to recognize that knowledge about health is not necessarily natural, universal, or fixed but rather is a social product and, therefore, malleable. From a critical standpoint, the learner must also be cognizant that certain (powerful) interests are served in maintaining the status quo of knowledge.
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Following an unsettling of taken-for-granted understandings, the adoption of alternative frames of reference requires exposure to novel frameworks. Examples of this can be found within fat advocacy and social disability movements, some of whom have rallied around alternative (non-medicalized) understandings of fatness and disability as forms of human diversity in rejection of medicalized notions of risky and tragic bodies (Oliver 2013; Saguy and Riley 2005). Developing a critical praxis. Through the process of constructing and adopting novel frames of reference, new opportunities are afforded for acting in ways that challenge the status quo (Fook and Gardner 2007, p. 38) or lead to a transformation to antecedent conditions (Archer 2015). In doing so, additional experiences and information are gained so that the learner may further develop their reflexive projects and frames of reference. The implication of this point is that learning is both ongoing and responsive to changes in structural and cultural conditions that affect health or shape public health knowledge and practice.
Given critical public health’s commitment to a participative health democracy, it is important to recognize that these learning processes need not be insulated from diverse publics. In fact, exposure to diverse perspectives, dialogue, and agonism is an important feature within these learning processes (Mykhalovskiy et al. 2019). The involvement of multiple publics can, and should, be obtained in providing sources of disorientation (e.g., reflecting the public or patient “experience”), offering novel frames of reference (e.g., in the aforementioned fat acceptance and disability social movements), and participating in health social movements (Scambler and Kelleher 2006). Thus, it is logical to conclude that being critical in public health requires participation in learning communities. The following section offers guidance into how readers might locate and participate in these communities.
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Where Can a Critical Public Health Be Found?
While socially critical approaches to public health are broadly diffused across academic and health disciplines and across fields of education, research, and practice, a critical public health can most easily be located alongside critical pedagogies in higher education (particularly among the health professions and in fields of health and physical education), among critically oriented journals for the health professions, in pockets of health promotion and epidemiological practice, and in civil society via certain health social movements. While this list is not exhaustive and does not include an expansive critical social scientific literature outside of public health, it does offer a good entry point to the field for global health educators, researchers, and practitioners. Within higher education, critical approaches to public health are likely to draw inspiration from critical pedagogy. Inspired by a politicized popular education in South and North America and developing as a form of politically engaged educational scholarship within North America (Evans 2008; Kincheloe and Mclaren 2011), critical pedagogy identifies educational institutions and practices as complicit in transmitting the (capitalist) values of the state and in reinforcing social hierarchies related to class, race, and gender (Kaufmann 2010; Tarlau 2014). In reaction to this,
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critical pedagogy emerged as an alternative model of education, using educational tools to help students critique the way in which certain values are reproduced through school cultures and systems of knowledge production (Steinberg and Kincheloe 2010; Tarlau 2014). While informed by diverse and debated critical theoretical traditions, the broad goal for critical pedagogy was to democratize societies through the inclusion of marginal voices (Steinberg and Kincheloe 2010), questioning the status quo of truths, obligations, and social relations (Steinberg and Kincheloe 2010; Tinning 2002), and understanding the relationship between knowledge, values, social relations, and power (Giroux 2004, p. 34). In relation to a critical public health, scholars of health and physical education (Fitzpatrick 2014; Fitzpatrick and Burrows 2017; Leahy 2013; Tinning 2018) have made important contributions to the theory and practice of teaching and learning within a critical health paradigm. While there is limited evidence for the precise extent of adoption and use of critical pedagogies in the education of public health and health professionals (Pillen et al. 2019), there exists a chorus of voices calling for its wider adoption (Brady and Gingras 2019; Matthews 2014; Morley et al. 2020). Several public health and healthcare disciplines also feature critically oriented subdisciplines, whose ideas and critiques are gathered under relevant scientific journals. Examples of such subdisciplines and their publications include Critical Public Health, Critical Dietetics, Critical Social Work, and the Journal of Critical Psychology. These health disciplines provide fertile ground for social critique given how the work of these health professions is intimately tied to social and political processes, and that their disciplinary practices (in a professional and Foucauldian sense (Rose 2007)) have been subject to a history of sociological examination and critique. Taking dietetics for example, dietetic practice can be seen as a space where biomedical understandings of the body, notions of healthy citizenship and self-care, and professional surveillance intersect (Gingras and Brady 2019; Morley 2019), which risks creating a professional environment where class-based difference in health or dietary behavior is obscured to the detriment of health equity. Consistent with the principles that constitute a critical public health, critical dietetic practice and research thus contests dietetic “facts,” encourages epistemic pluralism, promotes reflexivity, and works toward a socially just practice (Gingras et al. 2014). These critical journals play an important role in exposing newcomers to novel interpretive frameworks or frames of reference while also offering entry into a critical social science among those with no or limited social scientific background. The existence of critical voices within the healthcare professions means that those working in global health or in the social sciences may be able to locate critically oriented allies within public health practice. Another potential group of allies is those located within traditional public health subdisciplines of health promotion and epidemiology. While both subdisciplines have sustained ongoing criticism from a critical social science given their role in advancing medicalization, risk discourses, victim blaming, and health consumerism (Ayo 2012; Nettleton and Bunton 1995), it is important to recognize and acknowledge that the aims of these subdisciplines share multiple points of overlap with a critical public health and that these subdisciplines are subject to their own reflexive critiques. For example, the development
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of social epidemiology has offered insights into how socioeconomic position, social class, discrimination, and income inequality shape health (Berkman et al. 2014), and Indigenous scholars have sought to reshape the aims and methods of orthodox epidemiological investigation to better support action on sociopolitical determinants of Indigenous health and decolonize public health research and evidence (Prussing 2018; Ryder et al. 2020). Health promotion, which seeks to achieve health equity through action on social determinants of health (by definition through enabling public participation), offers many of the practical tools required to support action on determinants of health inequities. Rather than dismissing health promotion as an instrument of the neoliberal state, a critical public health may work with those in the field to help resolve the questions, challenges, and contradictions that health promoters and critics alike encounter (Mykhalovskiy et al. 2019). By working with the public health subdisciplines, a critical public health can remain true to the espoused multi-, inter-, and transdisciplinary approaches advocated for by a critical public health. Finally, and not to be forgotten, critical voices can be found within civil society. Scambler and Kelleher (2006, p. 220) identify that a broadly diffused “culture of challenge” has emerged in response to increasing health inequalities and lifeworld colonization. In response to this, publics have loosely mobilized around issues of rights, service use, health campaigns, identity, and politics, forming a variety of grassroots health social movements. Involving a coalition of academic, professional, and grassroots groups that have coalesced around a dissatisfaction with growing health inequities and perceived lack of global effort to address these inequities, the People’s Health Movement is another example of this culture of challenge, drawing upon both empirical public health evidence and public experiences to engage in a politics of health (Kapilashrami et al. 2016). As a professional practice, public health has also sought to make decision-making around resource allocation and public health action more democratic (Degeling et al. 2015). Although there are different traditions from which to view deliberative democracy, notably the Rawlsian liberal tradition and Habermasian critical theory tradition (Hammond 2018; Rostbøll 2008), it is the latter that relates most closely to a critical public health. While this overview of the role of publics within a critical public health represents the tip of the iceberg, it is a fitting reminder that a critical public health has much to learn from and alongside the public whose health it protects and promotes.
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Conclusion and Future Directions
The start of this chapter noted that a critical public health speaks to our propensity to question the status quo of public health knowledge and practice. Furthermore, it posed questions of what is meant by health, what determines health, how should the public’s health be promoted and protected, who decides these things, and why is it difficult to imagine alternatives to the status quo? Throughout the chapter, it has outlined how a critical public health might address these questions. Guided by a critical social science, a critical public health supports readers to reflect on their
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perceptions of what counts as public health knowledge and to locate this knowledge within social, political, and historical contexts. Motivating this critique is a concern with the medicalization and de-politicization of public health, which has functioned to obscure perceptions of the way that health inequities are established and maintained through historical and contemporary social, economic, and political arrangements and institutions. From the standpoint of a critical public health, a democratization of public health knowledge and practice is required, bringing together diverse publics who are supported to overcome ideological constraints to thinking more freely about public health knowledge and practice. For those working in global public health, a critical public health offers the conceptual and methodological tools to deal with the challenges, or crises, that confront public health into the future. Such crises include increasing health and social inequality, anthropogenic climate change, and the instability of global economies, constituting a discursive mantra of concern for public health associations and organizations worldwide (Adams et al. 2019; Public Health Association of Australia 2022; United Nations 2015). Through these crises, public health is becoming increasingly aware of the shifting global and political processes that shape the public’s health, including changes in the relation between nation states and citizens (Adams et al. 2019). In positioning itself at the “‘cutting edge’ of critical thinking in public health” (Bunton and Wills 2004, p. 79), a critical public health reminds readers that they need to be attentive to such social and political changes. However, such a critical stance is not a given on a background of economic liberalism, which contributes to biases toward short-term interventional and epidemiological research (Graham 2010; Wardle et al. 2019), thus failing to provide public health policymakers and practitioners with appropriate evidence to tackle these crises. Despite these challenges, a critical public health is indispensable to public health research, policy, and practice precisely because the future is central to the “mission and methods of public health” (Graham 2010, p. 150). The profession of public health has a unique stewardship role over population health, meaning that public health actors have an ethical duty to consider future publics and future health in their decision-making – a duty that inevitably aligns public health with the workings of the state (Graham 2010). A critical public health provides the conceptual and methodological tools to manage this relationship while providing an ethical guide to public health practice and providing evidence for action in contexts of national development, social change, and uncertainty. Specifically, a critical public health can draw from its social scientific roots to contribute to a broader understanding of the determinants of human health and health inequities, mitigating the inbuilt biases and myopia in public health research and practice, and developing evidence where traditional positivist approaches may struggle to keep pace (Correia and Willis 2022). Such alternative approaches to evidence production are important when managing the effects of diffused and rapidly changing global processes and when empirical associations between exposures and health-related outcomes require theoretical elaboration (such as with relationships between socioeconomic status and health (Scambler 2018)). Social scientific models and frameworks, particularly those found within disciplines of
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political science and sociology, can also contribute to knowledge about how public health actors might work to influence government action. In applying such knowledge, a critical public health may also support development of the democratic turn in public health, drawing from the values and logics of different publics to determine how scarce public resources should be best spent. As this chapter has demonstrated throughout, a critical public health offers a productive space where critical social scientists, public health professionals, and diverse publics can come together to (re)interpret and create public health evidence to inform an equitable future practice.
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Health Promotion Practice Marguerite C. Sendall, Eva Neely, Ann Pederson, and Jody O. Early
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Art of Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Settings in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Collaboration in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Communication in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Evaluation in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 Leadership in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.6 Advocacy in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.7 Politics in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Science of Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Integrated Learning in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Critical Reflexivity in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Health Determinants in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Knowledge Translation in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Co-Design in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 Evidence and Ethics in Health Promotion Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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M. C. Sendall (*) Department of Public Health, College of Health Sciences, Qatar University, Doha, Qatar e-mail: [email protected] E. Neely School of Health, Te Herenga Waka, Victoria University of Wellington, Wellington, New Zealand e-mail: [email protected] A. Pederson BC Women’s Hospital and Health Centre, University of British Columbia and Simon Fraser University, Vancouver, Canada e-mail: [email protected] J. O. Early School of Nursing and Health Studies, University of Washington, Bothell, WA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_11
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4 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 164
Abstract
Practice is the face of health promotion; it is a grassroots, ground-up approach to addressing health inequities, social injustices and improving population health outcomes. Some practitioners find a niche in traditional health promotion environments such as evaluation, advocacy, or policy. Other practitioners embark on new ventures like consultancy or emergent endeavors like politics. Either way, health promotion practitioners are passionate about the populations they serve and believe they can make a difference to health and social outcomes. For some practitioners, health promotion is an art. The art of implementing good evidencebased activities in culturally nuanced and intrinsically complex settings. The art of understanding diverse and unique communication at different times, at different levels, in different ways and adapting rapidly. The art of persistent complexities in shared visions and competing agendas in collaborative efforts. The art of entrepreneurial leadership. For other practitioners, health promotion is a science. For example, some practitioners might work in a learning environment which uses theory-driven approaches and critical reflexivity. Others may work in research settings where examining root causes of for example, health, health determinants or health inequities and generating new knowledge are prioritized. Regardless, the art and science of health promotion are not discrete entities and are intrinsically intertwined – the sum is greater than the whole. The art and science of health promotion need each other because they are both required to challenge the discipline to always do better. Keywords
Health promotion practice · Settings · Collaboration · Evaluation · Leadership · Advocacy · Evidence · Determinants
1
Introduction
Health promotion emerged from public health as a specific discipline with its own distinctive values, paradigms and aspirations. As health promotion grew, there was a proliferation of definitions to establish the parameters of health promotion’s philosophy, paradigms, and practice. A common definition of health promotion which has passed the test of time is “. . .the process of enabling people to increase control over, and to improve their health” (World Health Organization (WHO) 2022). However, this definition may be too rigid and fail to encapsulate the practice of health promotion in a contemporary context. Much earlier, Winslow (1920) defined public health as “the science and art of preventing disease, prolonging life, and promoting health of populations through the organized efforts and informed choices of society, organizations, public and private communities, and individuals.” This definition may better reflect the complexity of health promotion practice. Contemporary authors,
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such as Laverack (2017) agree. Laverack explains research, models and theory form the basis of science and our collective health promotion understanding and experience. There is irrefutable evidence for the most complex and urgent concerns in health promotion. For example, the COVID-19 pandemic has seen a proliferation of robust evidence about health and social inequities within countries and across the globe, adding to the already well-substantiated literature. However, the production and application of robust science may not result in desired outcomes. It is this quandary which challenges the balance of good science and applied science – or what happens in real life contexts? It is this juncture which deflects to the art of health promotion and raises more questions than answers. For example, what is effective advocacy for climate action in an unstable, unpredictable, and hostile political environment? What is coordinated action in a global environment imbued with the unequal distribution of wealth, power, privilege, and nationalism? How are emergent perspectives and Indigenous knowledges respected in a funding paradigm driven by medical sciences? Progress in the art of health promotion in increasingly complex practice environments is permeated with ongoing tensions such as strategic priorities and funding shortfalls. Despite the ominous and dire tasks ahead, health promotion practitioners in every practice environment, by their very nature, work tirelessly towards the pursuit of effective practice and emancipatory population health outcomes. The first part of this chapter introduces contemporary ideas related to the art of health promotion practice. Settings-based health promotion, followed by collaboration and communication in health promotion are discussed. Contemporary issues about evaluation and leadership in health promotion practice are considered. This part of the chapter will conclude with a discussion of the salient issues related to advocacy and politics in health promotion practice. In the second part of this chapter, current concepts and thinking relevant to the science of health promotion practice will be outlined. This will include integrated learning and teaching and critical reflexivity in health promotion practice. Following this, pertinent issues related to the determinants of health, the translation of knowledge and co-design approaches in health promotion practice will be considered. Finally, evidence and ethics in health promotion practice will be covered.
2
The Art of Health Promotion Practice
2.1
Settings in Health Promotion Practice
The settings-based approach is a corner stone of health promotion practice designed to strengthen existing systems and structures for healthy environments. Settings, such as schools, workplaces, and cities, are the places where individuals ‘learn, work, play and love’ (WHO 1986, p. 3). Settings-based health promotion acknowledges people inhabit many different and varied physical and social environments in everyday life. Drawing on health promotion theories (socio-ecological theory) and models (Ottawa Charter; WHO 1986), health promotion settings-based practice
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permeates real-life contexts to support better health outcomes across multiple levels. The COVID-19 pandemic served as an abrupt interruption for health promotion to revisit, reinvigorate and revitalize values, approaches, and strategies. Dooris and Baybutt (2021) acknowledge the COVID-19 pandemic has forced settings to re-evaluate levels of behavior change in physical, social, cultural, economic, and political contexts. The COVID-19 crisis has highlighted the importance of an interconnected whole system approach to traverse ambiguity and intricacy and ensure a more effective population health response. Dooris and Baybutt note four key features of effective settings-based health promotion. Firstly, organizations should reflect an internal connectivity of thinking and working across the whole setting. Secondly, organizations should look outwardly to connect across multiple settings. Thirdly, organizations should create connections between different decision-making levels. Lastly, well-being advocacy must be communicated as a business priority because ‘health’ is not core business in most settings. The currency of this opportunity to refocus efforts to reduce health inequalities and promote wellbeing, influence policy, and change practice, look after our planet and ‘re-set the settings’ is time limited. Spotlight
Health promoting schools and holistic nutrition promotion Schools are a well-established setting in health promotion. Health Pomoting Schools (HPS) is a whole-school approach across the curriculum, social and physical ethosand enviroment and broader school community (Thomas and Aggleton 2016). Activities and strategies address a wide range of health and social issues, including but not limited to, nutrition, physcial activity, bullying, sun exposure, sexuality and relationships, oral health, environmental exposures or climate action. The World Health Organization’s HPS framework is a guide to action (WHO 2001). Across the globe, continents and countries have adapted this model to meet their local needs (e.g., Cognition Education 2011). A unifying notion is that adopting a whole-school approach is most effective and can create synergies in promoting holistic health domains (Thomas and Aggleton 2016). Nutritionis a common and important health domain promoted within schools and has shown a broad reach. For instance, school garden programs have increased across the past decade and been a poster child for reaching across curriculum, school ethos and environment, and community. The Stephanie Alexander Kitchen Programme in Australia produced learning, skills and competence in growing, cooking and eating a wide variety of whole-foods, and showed improved student engagement and confidence, teamwork and social skills, experiential and integrated learning across curriculum areas, and imporved opportunities for and understanding of cultural diversity and community building (Block et al. 2015). Importantly, nutrition (continued)
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activities that span across the whole school have the potential to improve health across physcial, social and mental domains (Neely et al. 2016b). Food practices, as daily, habitual and integrated activities in schools, as well as crucial components of celebrations have much potential to go beyond improving nutritional intake and impact on school connectedness (Neely et al. 2015), an educational indicator for improved student success and retention. This includes daily lunch-sharing and rituals (Neely et al. 2016a) to larger one-off events in which cultural diversity, success and common humanity is celebrated (Neely et al. 2015). School food practices demonstrate the far-reaching and synergising effect whole-schol approaches can have in promoting student health and point to future opportunities for promoting holistic health. Importantly however, health-promoting schools, like other settings-based approaches, is only effective when it ties into the core business of the setting and is valued. This is ideally achieved by making it an integral component of school operations to ensure greater sustainability.
2.2
Collaboration in Health Promotion Practice
As a field, health promotion has long understood the concept and value of crosssector collaboration to enact tangible and emancipatory change in social and health environments. Underpinned by the determinants of health and a commitment to health inequity and social justice, it has long been recognized health alone cannot address health outcomes because of the complex nature of the health environment. In Australia, health has long-standing partnerships with, for example education and housing at state and national levels. As health environments become everincreasingly complicated, contemporary partnerships include, for example urban planning and climate action. Recently, Amir Esmaili et al. (2021) conducted a scoping review to better understand the implementation of intersectoral collaboration in health promotion. The authors found the most frequent criterion was micro level. The micro level is focused on stakeholders’ social interaction, relationship building, sharing knowledge and information, structure of communication and the extent of leadership. The most frequent models were social network analysis, Diagnosis of Sustainable Collaboration, Bergen, and logic models and the most frequent indicators were participant numbers, collaboration level and sustainability. However, systemic, and structural change is lagging behind the aspiration because it is complex and requires a shift in health promotion’s approach to addressing the structural determinants of health. Over more recent times, health promotion has found less traditional partners, such as the arts, for interdisciplinary collaboration. The arts have a history of engaging with conditions which underpin poor health outcomes such as poverty, social inequality, and structural racism and have increased relevance as existing paradigms
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of health promotion have realised diminished returns. Epstein et al. (2021) highlight the opportunity to build neighborhood assets and address the social determinants of health through intersectoral and interdisciplinary collaboration between communitybased health promotion and community-engaged arts. The authors present lessons learnt about co-creating artworks, arts-based advocacy, and reciprocal relationships from the Skywatchers, a culturally rich and economically poor collaborative community arts ensemble in the Tenderloin neighborhood of San Francisco, California. Other less traditional partnerships include community development which offer creative approaches such as co-design, co-creation, and co-production. These approaches consider populations as collaborative partners where the power relationship is inverted and voices not traditionally heard, are the loudest. Community development offers a nexus incorporating a critical realist approach to better understand the social and environmental determinants of health. For example, Cowan et al. (2022) suggest recent global events have highlighted the urgent need to reinforce collaborative action to address structural social and health crisis such as police violence, urban renewal, and environmental injustice. The authors propose a collective healing framework which merges the Collective Impact Model (CIM) and the Radical Healing Framework (RHF) as a blueprint for cross-sector collaboration which puts healing practices front and center of public health collaborations. The CIM guides multi-sector collaboration to addresses systemic public health crisis. The RHF supports healing and develops resilience for system and community-based trauma through community-based efforts. The framework includes critical selfreflection, building relationships, addressing differences, sharing understanding, questioning conventional approaches, moving beyond compromise, and reimagining collectivism. Similarly, Jackson (2021) argues public health, community development and the arts should be allies to address social and environmental determinants of health and improve health outcomes. In this approach, attention is directed to the gaps in community development and planning, such as acknowledging and addressing past and present hurt, using arts and cultural activity to best critically and collectively reframe identified community issues. These ‘greater than the sum of the whole’ alliances help strengthen the power of arts and culture, realize new ways of doing health and contribute to fair and just, healthy, and equitable communities.
2.3
Communication in Health Promotion Practice
With its roots in health education and current approaches to health literacy, health promotion has long relied on communication approaches, theories, and technologies. In a recent review, Nutbeam and Lloyd (2021, p. 159) note “evidence of a social gradient in health literacy has been found in all reported national population surveys. Health literacy is a midstream determinant of health but not a panacea for addressing health inequities created by the maldistribution of opportunity and resources.” The upstream-downstream model provides a framework for understanding the determinants of health. Upstream determinants are structural and system factors, for
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example, housing and education policy. Midstream determinants are behavioral factors for example, sedentariness, smoking tobacco and poor nutrition. Downstream determinants are individual attributes for example, hypertension and high cholesterol. Public health addresses health outcomes from an upstream and midstream approach (McMahon 2022). Accordingly, they argue that efforts to improve health literacy should target the development of individual literacy capacity in relation to specific health issues, improve the health literacy skills of clinical providers, adopt proportionate universalism to ensure the level of intervention corresponds to the level of need, and work to increase the social determinants of health such as education, occupation, and income that are the foundations to health literacy. Since the Ottawa Charter (1986), technology has developed at lightning speed. This rapidly moving technological environment offers opportunities for health communication and global health promotion practitioners. However, technology has widened health inequities and at the very least, made no difference. For example, access to affordable and reliable mobile phone coverage. The uptake of mobile phones provides remarkable opportunities to reach potential health audiences, but health promotion must compete with commercial interests and consumers of health promotion traverse a complex environment when trying to access credible, reliable, and relevant health information. A distinct manifestation of the COVID-19 pandemic was the so-called “info-demic”—the global glut of rapidly evolving misinformation spread through the Internet and social media on everything from risk factors to vaccine access and safety to travel restrictions and symptoms of long-COVID. The pandemic also exposed the vast inequities within and between countries in access to and use of technology to understand and manage the pandemic. Recent discussions remind health promoters to investigate the nature of the data that drive the algorithms of health communications, particularly their gendered nature (Criado Pérez 2019). From crash test dummies designed to examine the impact of vehicle accidents and fail to account for the pregnant female form, to analyses of commuting patterns based on a male breadwinner model, engineering and software solutions often rely on incomplete data that render equipment difficult to use or even unsafe for some people, especially women. Even though women are the caregivers in most households, they are not necessarily the health decisionmakers or the person most likely to have access to a cell phone, internet service, or the education on how to read, understand, and interpret health information. Challenge
COVID-19 Infodemic In September 2020, WHO posted a joint statement with other global organizations regarding the need to mitigate the harm arising from misinformation and disinformation related to the COVID-19 pandemic. In so doing, the organizations declared an “infodemic”. (continued)
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What is an infodemic? “An infodemic is an overabundance of information, both online and offline. It includes deliberate attempts to disseminate wrong information to undermine the public health response and advance alternative agendas of groups or individuals. Mis-information, that is the purposeful or otherwise creation of information which is not correct (Early et al. 2022) and disinformation which is the deliberate distribution of misleading information (Starbird 2019) can be harmful to people’s physical and mental health, increase stigmatization, threaten precious health gains and lead to poor observance of public health measures, thus reducing their effectiveness and endangering countries’ ability to stop the pandemic (WHO 2020). 1. How might health promotion assist in addressing the infodemic? 2. Who was positioned to speak on COVID-19 in your community? 3. What tools are available to manage the information challenges that have arisen as a result of the proliferation of misinformation and disinformation on social media? 4. What more needs to be done?
2.4
Evaluation in Health Promotion Practice
Evaluation is a core component of health promotion practice with powerful potential to evidence impact. However, with this power also comes complexity. Determining measures of success is often like a tightrope walk between funder and community needs, with these two not necessarily being on the same page. Determining what is measured implies value and has implications for what can drive further funding. Traditionally health promotion programs adopted approaches that were informed by clinical randomized controlled trials. With their dominance and associated strength of evidence, it was naturally assumed hard evaluation measures and controlling the environment are crucial steps for diligent evaluation (Shoveller et al. 2016). However, failures of evaluation effectiveness aside, it has become evident, as health promotion has established itself as a discipline, that complex social contexts call for different, locally-adapted measures (Shoveller et al. 2016). Further, as a values-driven discipline health promotion aspires to inform design and evaluation of practice with core tenets of participation and meaningful community input. Evaluation is then deemed appropriate when it is informed by the context (what), consideres who ought to gain (for whom) and with what end (for what) it is sought (Springett 2001). Moving beyond linearity and causation, health promotion programs, as embedded in socially complex contexts, are better understood as social processes, rather than ‘treatment of dose-response’. The implication for evaluation is that such is best informed by participatory action research principles such as collaborative resourcing, reflexive and dialectical critique and commitment to
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change, to ensure measures, variables and context can be sensitive to the local context (Springett 2001). Social scientists can turn to emerging health promotion scholarship to witness a proliferation of innovative evaluation, including work in realist evaluation (e.g., Tennant et al. 2020), complex social system evaluation (e.g., Matheson et al. 2018) or creative evaluation methods (e.g., Edmonds et al. 2021); as well as attempts to incorporate the ‘spirit’ of the program into evaluation (Rod et al. 2014). These innovative evaluation approaches, emergent in the literature, encourage health promotion practitioners to look beyond ‘tried and tested’ evaluation methods to trialing something novel, taking educated risks and reporting applied usefulness. Spotlight
Evaluating a multi-community health and well-being initiative - Healthy Families NZ Healthy (Te Whatu Ora 2022). Families NZ is a community health promotion initiative that focuses on creating healthy, more equitable communities. The initiative aims to improve people’s health where they live, learn, work, and play by taking a ‘systems change’ approach to preventing chronic disease as well as having explicit focus on improving equity and health and well-being outcomes for Māori. The initiative is currently being carried out in 11 communities across Aotearoa New Zealand and has been running since 2014. The diverse community contexts and ways the initiative is being implemented locally, poses challenges for evaluation. In response to these challenges a comparative case study design - Qualitative Comparison Analysis (QCA) – is being used (Matheson et al. 2018). Within this design a range of analytical strategies have been deployed including rich cross-case comparison, indicator analysis, longitudinal analysis of health and well-being status, and a cost-consequences analysis (economic evaluation). Data has been collected through key informant interviews, provider reports, cost information, stakeholder surveys, extracts of national survey and administrative datasets, and Outcome Narratives (ONs) - which describe and evidence local successes (Matheson et al. 2020). A mixed-method case comparison approach is the most appropriate way to evaluate programs and other policy actions being implemented within different local contexts as it can provide rich, context specific information to improve the effectiveness of action on the ground. However, there is a strong desire among decision-makers to see simple quantitative measures of changes – therefore the job of communicating the findings of a mixed-method, cross case approach is challenging. Overall, the evaluation has found that Healthy Families NZ is making successful progress and has remained grounded in integrity to the purposes of the initiative. It is demonstrating that comprehensive and effective action guided by local voices and local needs to address the determinants of health and well-being can be achieved.
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Graduate students, as well as practitioners in health promotion often pursue practical experiences in program evaluation, recognizing that this is a marketable skill. As the health promotion field advances from programs focused on discrete health issues to creating health promotion systems to advance health and well-being, the intervention development and evaluation models that provide feedback must necessarily evolve—and the educational experiences used to train future health promoters as well. One approach worth learning more about is Barberg’s (2017) strategy management approach to addressing population health problems such as obesity, violence or school nutrition that entails strategy mapping system’s level actions that together can transform the conditions that create and sustain health and social problems. Using this approach, the author also suggests that it may be time to switch from evaluating individual interventions or programs to measuring “managing strategy implementation”. Instead of asking for the action and then asking for the measure of success (for evaluation). This switch changes the process to determining the measure that needs to be moved and then asking what actions will be needed—by many organizations in a mutually reinforcing way—to move that measure to the target level (Barberg 2017, pp.315-316). A new national research training network in Canada, the Alliance against Violence & Adversity (www.avatraining.ca), is working with Barberg’s approach to transform research to prevent and respond to violence. Barberg has also received support from Michael Patton, whose work is widely taught to graduate students in public health and health promotion, in this approach. Patton (2020) has recently extended his work to the global context, in his recent book, Blue Marble Evaluation: Premises and Principles (a reference to the appearance of Earth when viewed from space). In this new global view, Patton details an expansive vision of evaluation, one that views problems holistically, systemically, and ecologically. Rather than a set of rules to guide evaluation, Patton’s approach is principles-driven. Briefly, the author identifies four ‘overarching’ principles: (1) global thinking; (2) anthropocence as context; (3) transformative engagement; and (4) integration. These principles are in turn supported by operating principles. Together, these principles constitute his Blue Marble Worldview and approach to evaluation (Patton 2020).
2.5
Leadership in Health Promotion Practice
Long before the outbreak of SARS-CoV-2, there was debate about what public health, and by default, health promotion leadership would need to look like in the twenty-first century. Ironically, given the public health-mandated lockdowns of the early pandemic, Czabanowska et al. (2014, p. 148) argued that “(T)he authority of public health leaders in the future will arise from their ability to convince others of the central importance of population health and well-being through influence rather than control”. In the context of the global pandemic, public health leaders used many instruments to manage the crisis but are perhaps best known for imposing restrictions on liberty, commerce, and travel.
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While the COVID-19 pandemic raised the visibility of public health globally, it did not necessarily raise that of health promotion. Since its emergence, health promotion has struggled for legitimacy within the larger discourse of public health, where leadership has traditionally been ascribed to medical practitioners with advanced public health training and historic administrative models (Nicola et al. 2020). Perhaps as the pandemic shifts toward being endemic and the struggles with long COVID, students’ gaps in educational attainment, and vast mental distress continue, it will become clearer there is a role for health promotion’s positive conception of health (including mental health), commitment to health and social equity, and concern for human health in the broad context of planetary health. Leadership at the local, regional, and global levels will all be essential to this happening (Guest et al. 2020). Leaders in health promotion have sometimes been challenged for their multidisciplinary scholarship, explicit advocacy, and embracing of “pracademics” (Powell et al. 2018). Pracademic refers to an identity reflecting the merged role of practitioner and academic. Finding like-minded individuals who share health promotion’s values and knowledge base is increasingly supported by new technologies and social media, but also by long-standing organizations such as the International Union for Health Promotion and Education (IUHPE, n.d.), the only global organization devoted to advancing health promotion as a professional practice. The Union’s current accreditation system, journal, regular conferences, commitment to health promotion systems, and advocacy for equity are some of the specific expressions of its global leadership. Leadership is a core competency for health promotion (IUHPE 2016). At an individual level, many public health and health promotion degree programs teach students that leadership is a required core competency and a skill that can be learned. This is a response to institutional statements regarding public health practice. For example, leadership is identified as one of seven core competencies for public health practitioners in Canada (Public Health Agency of Canada 2007) as well as by the Council on Public Health Education (2021) in the United States (see https://media. ceph.org/documents/2021.Criteria.pdf). In Europe, a consensus process proposed that, “[a] leader should be content driven, transparent, open and trustworthy. Public health leaders should try to bridge the gap between policy, practice and research, and connect different worlds of science, policy and practice” (Czabanowska et al. 2014, p. 1049). This view of leadership as skill comprised of observable processes, behaviors and content is consistent with the research on leadership in the business world, including the foundational work by Conger and Kanungo (1998) on charismatic leadership. Their thesis is that charismatic leaders are identified as such by those who follow them and that there are three stages to their leadership. First, they critically evaluate the status quo. Second, they formulate and articulate future goals and an idealized future vision. Third, they demonstrate how the vision can be achieved. Using this view of leadership, health promotion has had its fair share of charismatic leaders. Beginning with those who came together to author the Ottawa Charter, and long since, the field has witnessed many visionary leaders (who are too numerous to name here). Many of the field’s leaders have been academics, but others also work in
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non-governmental organizations, global health agencies such as the WHO, UNICEF, and the World Food Programme, and various levels of government or ministries of health—each of which is structured and organized according to their constitution. But leadership must be exercised if it is to fulfill its promise. While individual health promotion practitioners may be constrained to act independently by their employment arrangements, academics may be limited in their ability to translate evidence into practice through direct application within health and healthcare. For health promotion to advance, leadership must be exercised in all the settings and structures in which health promoters’ function and act, and health promoters need to work in partnership with others across the globe to articulate a renewed vision of human and planetary health.
2.6
Advocacy in Health Promotion Practice
Advocacy has always played a significant role in health promotion’s arsenal, but efforts are often hindered by the urgency of time, limited capacity, and political will and savvy. Advocacy for investment in health promotion has not made the headway expected, and despite decades of effort, experts and sectors agree there is a lack of significant local and global investment in health promotion. Barry (2021) critically reflects about progress to date, and structures and processes required to strengthen systems-level, transformative health promotion. The author outlines key enablers and system requirements and four critical elements for transformative health promotion. Firstly, effective advocacy for the concept and practice of health promotion. Secondly, policy and policy implementation which supports universal health promotion. Thirdly, effective systems for implementation and the mechanisms and workforce to support implementation. Lastly, significant investment is needed in pioneering research methodologies and the translation of knowledge. Post-pandemic is an opportunity for health promotion to advocate for health and social priorities and ‘build back better’ (Barry 2021). For example, core values and principles, human and planetary well-being, investment for health promotion action and the Sustainable Development Goals (SDGs). Underpinning the idea of ‘build back better’ is the need for more effective advocacy plus political will for increased and sustainable funding and investment in organizational and workforce capacity. In countries such as Australia, Canada, the US, and the UK, the pandemic highlighted the existing and exacerbated the known health and social inequities in certain population groups such as those living in poverty, with a disability, who are homelessness, ageing, from a lower socio-economic background, and racialized. Emergent inequities such as education and employment were less expected but in reflection, not surprising (Smith et al. 2021). In Australia, consumer and professional groups have long advocated for action on all determinants of health to address health inequity supported by significantly more investment in health promotion. Reassuringly, Baum (2021) notes the shift in health promotion’s focus from behavioral change to equity, environments, and ecology. In pursuit of this ambitious endeavor, Baum outlines three tasks: (1) appreciate complex ecosystems and value and protect
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the natural environment and biodiversity and prevent global warming; (2) lobby and support all levels of health governance to prioritize health equity, environments for health, engage communities in decisions, economic models for health and better understand how to address the determinants of health; and (3) professionalize the health promotion workforce to support civil society movements and economic change for better health outcomes. Locally and globally, the pandemic shone a spotlight and bought to the fore the seriousness of action, or lack of action on health and social inequities. This outing of health and social disparities obligates health promotion to increase advocacy efforts at all levels of government to implement policy to address the determinants of health.
2.7
Politics in Health Promotion Practice
The politics of health promotion has become overt over more recent times and highlighted in the last few years. As a discipline, health promotion should invest in a profound understanding of government, for example, the relationship between local, state and federal jurisdictions. Equally important is a much greater appreciation of politics itself. In particular, the forces and powers which drive the political agenda. Essentially, health promotion needs to be much wittier and influence politics to address health inequities, and the determinants of health. The urgency for health promotion action and the politics of health promotion can be addressed in several ways. de Leeuw et al. (2021) suggest health promotion should build its policy credentials to increase the sense of urgency for human and planetary health. The authors argue health promotion has sound conceptual and theoretical foundations and should strengthen the links between health promotion and human and planetary health. Three case studies highlight pressing issues such as ‘closing the gap’ for Australian Indigenous populations, the marriage of urban theory and health equity to influence health promotion and public health policy, and the presence and prevalence of unconscious bias in policy and practice priorities and processes. The authors conclude all health promoters should be aware of the political nature of their enterprise. As local and global political climates become more volatile and chaotic, health promotion practitioners should sharpen their political knowledge, for example, legislative frameworks, how preselection works, how the Senate functions and the power of independents. Practitioners should arm themselves with political skills, for example, nuanced language to reach politicians and broker better population health outcomes. Other authors suggest political will is needed to take advantage of current opportunities. Smith et al. (2021) reiterate the disparate effects of COVID19 on specific populations in Australia and what this means for health and social policy and practice responses. The authors point out that the Consumer Commission: Beyond COVID-19 noted positive changes which ensued from COVID-19 such as improved mental health support, improved digital health, more efficient inequities data-toevidence cycles, better social support (income, housing, childcare), and the acknowledgment of Aboriginal and Torres Strait Islander leadership. At the same time, the
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Consumer Commission released the Consumer Commission Report – Making Health Better Together: Optimising consumer-centred health and social care for now and the future, explicitly calling for investment in health promotion to improve health equity in Australia. For example, the Commission called for social infrastructure funding and increased investment in prevention to at least 5% of overall health spending as part of the National Preventive Health Strategy, 2021–2030. This call to action aligns with a protracted and largely unanswered call for increased investment in promotion and prevention fundamental to address health inequities. Greater political will is required to identify health inequities as a major health policy priority and mandate increased investment in health promotion and prevention in Australia and many other advanced capitalist countries.
3
The Science of Health Promotion Practice
3.1
Integrated Learning in Health Promotion Practice
As models of education changed from apprenticeship models such as nursing, where nurses were trained ‘on the job’ to the higher education sector, clinical sciences were challenged to evaluate effective strategies to prepare students to enter the work force. In the early years of health promotion, many practitioners attracted to this new field of practice were from clinical backgrounds with transferable knowledge and skills and an ability to rapidly adapt to a new working environment. Over time, health promotion grew into a specialized discipline attracting a diverse cohort of students. Graduating work-ready students was influenced by prospective employers who preferred health promotion graduates who had undertaken Work Integrated Learning (WIL) in community workplaces. In particular, employers were looking for graduates who had experience in an interdisciplinary approach. According to Piggott and Winchester-Seeto (2020), interdisciplinary ‘WIL’, where students from a range of fields collaborate on the same project, is a key learning opportunity because students benefit from exposure to the design and implementation of interdisciplinary projects. Despite a very different emergent trajectory, health promotion is no different in its aspirations to ensure graduate students are ready to work and highly sought after. To this end, health promotion endeavors to constantly re-evaluate the effectiveness and impact of WIL. WIL takes many forms, dependent on discipline-specific requirements and higher education student attributes. WIL permits health promotion students to participate in real, relevant, supervised and assessed work-related hands-on experiences in a practice setting as part of their course. Health promotion students are exposed to a range of work settings in different sectors such as Education and local, national and international government and non-government organizations to observe and participate in the implementation of health promotion core competencies. Health promotion core competencies are a defined set of knowledge and skills which benchmark health promotion practice and vary across jurisdictions. For example, the IUHPE Core Competencies and Professional Standards for Health Promotion (IUHPE 2016)
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and Core Competencies for Public Health in Canada (Public Health Agency of Canada 2007). Essentially, WIL offers health promotion students’ experiential learning or the opportunity to apply theoretical concepts to practice-based tasks. For example, health promotion students can learn about the nuances of planning and evaluation in certain and specific contexts such as schools and local government. Participation in WIL promotes graduate students’ employability by offering useful practical experience which leads to career progression (Australian College of Physical Education 2021). Additionally, it allows health promotion students to experience a range of work settings which may provide insight and set career trajectories. Fundamentally, WIL proposes an approach to learning in higher education which considers the university’s boundaries to be porous. Health promotion students may participate in a variety of WIL approaches from virtual or simulated activities and projects, visits with health promotion experts in real world environments, field work and practicum placements, internships, job shadowing, and cooperative education (Jackson 2015). These approaches give health promotion students an authentic work experience to use and test their knowledge and abilities. The literature highlights many benefits of WIL. For example, career benefits may include employer demand for practice ready health promotion students, a direct entry into the health promotion practice environment, a smooth transition into the health promotion workplace (compared to those without workplace experience) and the confidence to apply health promotion knowledge and skills in an authentic setting (Jackson 2015). Academic benefits may include a better understanding and appreciation about why certain topics within health promotion study are necessary, better research abilities, critical thinking, and time management skills, more analytical in problem solving and better health promotion discipline thinking. Personal benefits can include better interpersonal communication and decision-making skills, better ability to work within teams, work towards common goal, develop organizational skills, and understand professional ethics and workplace value and better self-efficacy, professional identity, and ability to adapt to change. There are a variety of existing health promotion curriculum and pedagogical approaches for efficiently implementing WIL into the university context. The most visible and traditional type of experiential learning in certain university programs, are work placements and internships. Work placements have a well-established history in WIL, but they are more resource intensive, require more external stakeholders and may not be sustainable (Dean et al. 2020). Research about internships suggests students gain practical knowledge, create relationships, build a reputation, and publish work but there is variability in the reasons why students participate in WIL internships (Zegwaard et al. 2020). The literature suggests the most effective approach is a combination of on-campus and off-campus learning (Dean and Campbell 2020). This enables students, including health promotion students, to establish connections between learning in various settings and grasp what is required for efficient application of specific skills and information. In a more complex world, an authentic on-campus job experience is increasingly important. Technology can transcend geographical, time and financial obstacles to offer health promotion students and public health degrees novel WIL experiences (Peach et al. 2013).
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These advantages may make WIL more accessible and transferable to bigger groups. Glavas and Schuster (2020) propose there are four design concepts for eWIL – authenticity, technological integration, effective support processes, and co-presence and relationship building. The COVID-19 pandemic impacted students’ ability to complete WIL programs, especially during the lockdowns and has forced a higher education sector to develop institutional resilience by investing in new and sustainable WIL approaches (Zegwaard et al. 2020). According to Eisenstein and Raz (2021), institutional resilience will depend on an entrepreneurial WIL approach to incorporate a variety of activities for student learning, for example, bootcamps, creative hubs and transdisciplinary projects aimed at improving enterprise capabilities.
3.2
Critical Reflexivity in Health Promotion Practice
Critical reflection is a core competency across health promotion research and practice. As a science with commitment to pursuing a social justice agenda, health promotion seeks to unearth social inequities, power dynamics, and complex health issues, which requires tools for scrutiny. Critical reflection offers health promoters such a tool for the careful examination of socio-political, and personal taken-forgranted assumptions and politics underlying action (research, intervention, evaluation, practice, policy). Alexander et al. (2020) offer a framework for categorizing three ideal forms of reflexivity in health promotion: reflection in, on, and underlying action. The first two are oriented temporally. Reflecting-in-action involves ‘stopping, reflecting, re-orienting action in the moment;’ with reflecting-on-action occurring post-event, reflecting on what could have been done differently. Whilst reflecting in and on action are key comptencies, it is the deeper work in questioning the underlying assumptions that has most potential for re-imagining health promotion. What has also been termed ‘dark reflexivity’ (Bolam and Chamberlain 2003), practicing ‘underlying reflection’ can be a powerful tool for social transformation by enabling power dynamics, political and cultural values, and core taken-for-granted ‘facts’ of life to be questioned and re-imagined. Igniting and inviting others to participate in ‘underlying reflection’ can be difficult because it inherently involves quite personal confrontation that not every person may be familiar or comfortable with in professional settings. Facilitating dialogue in safe spaces and leading by example can initiate collective journeys into practicing underlying reflection. Additionally, engaging media, such as online videos, podcasts, or documentaries can harness diverse and novel perspectives that generate thoughts and help venture into this deeper level of reflection. Critical reflection can, and most likely should, also be brought into the classroom to students by invigorating them to constantly question and re-evaluate. In pedagogical terms, this can be achieved through relational and dialogue-based pedagogy in which students come together to discuss their emergent ideas with each other
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(Brownlee and Berthelsen 2008). Integrating self-awareness, questioning of positioning and experiences, and engaging in discomforts of undoing privilege can then become in-built pedagogical skills that help students become critical reflection practitioners (e.g., Wigginton et al. 2019). Setchell et al. (2021) coined the term ‘afflexivity’ as a critcial reflective practice that is explicitly orientated towards affect and emotion as active agents in our sensemaking of the world. The authors afflexively evaluate online backpain health information to explore feelings circulating in their encounters with the website. Such a practice may help push the boundaries of critical reflective practice by encouraging health promoters to step further outside of their ‘rational-cognitive comfort zone’ and more fully embrace their individual and collective socio-political landscape of feelings about- and with-people, objects, places and politics. This foregrounding of affect and emotion can tap into uncertainties and contextualities, and help them navigate the emotional imbrication with health. LET’S THINK: Post-Ottawa Critique
In 1986, the WHO held an international health promotion conference in Ottawa, Canada. The outcome of this conference was the Ottawa Charter for Health Promotion (World Health Organization 1986), which was the culmination of formative work done across the globe by eminent health promotion experts. At the time, the Charter was considered the bedrock of health promotion practice. However, over time, it has come under considerable scrutiny and been challenged for its relevance to all populations. Applying a critically reflexive approach, consider these questions in your own context. 1. Think back to the framework and fundamental principles underpinning the Charter. How relevant are they to the populations you work with? 2. The Charter identifies three actions for health promotion practice - enable, mediate and advocate. How do you think these actions should be understood and enacted within the context of the populations you work with? 3. What are some of the current criticisms of the Charter?
3.3
Health Determinants in Health Promotion Practice
Determinants of health such as but not limited to, social, environmental, commercial, economic, cultural, and political, have long been evidenced as underpinning health outcomes. However, the shift in focus from individual behavior changes and intervention activities to a broader settings, systems and policy approach is slow (Bliss et al. 2016). Too often, health promotion fails to take a joined-up, cross-sectorial,
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long-term, and strategic approach to address inequities and poor health outcomes. Real action needs to be driven by passionate advocates, real world practitioners and vested stakeholders on the ground for change in policy and policy implementation to address the wider determinants of health. In the UK, for example, there have been recent efforts to revitalize health promotion by changing the public health system structure. Cheater (2021) writes that the Office for Health Promotion, under the auspices of the Department of Health and Social Care has been tasked with three strategic priorities: (1) address inequities and improve population health: (2) support change in public health policy: and (3) implement government action to address obesity, mental health, and physical inactivity. This re-organization and refocus of government priorities provides hope for real action and sees health promotion and disease prevention embedded in all policy. A body of evidence clearly indicates health determinants disproportionately impact identified population groups. In the US, for example, the CDC acknowledges the role of health promotion to improve chronic disease outcomes for American Indian and Alaska Native communities (Gerber et al. 2021). Gerber suggests attention to critical history including oppression, genocide, and cultural erasure as well as tribal sovereignty should be the centerpiece of American Indian and Alaska Native communities for real action and change. A recent Canadian report on antiIndigenous racism within the healthcare system of one province (British Columbia) made similar recommendations, arguing that the path to reconciliation with the nation’s colonial legacies is through supporting Indigenous peoples’ sovereignty, self-determination, and leadership (Turpel-Lafond 2020). In this way, communities can be empowered to utilize their lived experience, knowledges, and selfdetermination to improve health outcomes on their own terms. Today, most health decisions remain embedded in colonialism and impact empowerment, selfdeterminism, liberation, and advantage of particular groups. Consequently, Indigenous knowledges are increasingly recognized as fundamental to decolonizing health promotion practice. Over more recent years, evidence for the impact of other determinants of health have emerged. For example, stigma increases stress and impacts access to resources for better health outcomes. Bolster-Foucault et al. (2021) conducted a rapid literature review and identified 10 domains of structural determinants of stigma experienced across health and social conditions. The authors suggest these domains can shape policy discussions and reduce population level stigma. As other determinants of health appear in the literature, ccontemporary approaches to addressing these determinants of health are emerging. According to Macassa (2021), social enterprise, for example, can address Sustainable Development Goal 3: Health for all at all ages, by altering economic, social, and environmental challenges and promoting health and well-being. The generally agreed definition of social enterprises is “sustainable ventures which combine business principles with a passion for social impact” (p. 5). Macassa suggests the opportunity of business to partner with health promotion is yet to be seen globally. Emergent paradigms offer opportunities for health promotion to take a much more critical realist view, enlist less traditional allies and shift traditional practices.
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Knowledge Translation in Health Promotion Practice
New terms such as knowledge translation and implementation science have emerged in recent years to describe the application of evidence to practice. Health promotion grapples with translating evidence - from other disciplines, from research to policy, from policy to practice and on the effectiveness of implementation. Schloemer et al. (2021) note any decision about implementation should be preceded by an assessment of intervention transferability and evaluated within the new context. The authors propose Population-Intervention-Environment-Transfer Models of Transferability (PIET-T) as a helpful model to assess the opportunities, challenges, and practical implications of transferability for health promotion. Various authors propose more critical approaches to gathering knowledge will enhance adoption. For example, Fiddian-Green and Gubrium (2021) highlight critical narrative intervention (CNI) which takes a narrative, participatory and asset-based approach to social inequalities and salutogenic health. This multidisciplinary and activist-based inquiry gathers new knowledge through digital and visual methodologies such as digital storytelling, story booths, photovoice, comics and graphic novels and cellphilms and other participatory film. Using these methods, practitioners and researchers can give voice to traditionally silenced populations, highlight the impact of stigma, pay attention to the critical public health praxis, and incite urgency for new pathways to address health equity. Other authors highlight the complexity of translating health promotion evidence into practice. For example, Pauly et al. (2021) interviewed public health practitioners to better understand their ethical concerns about mental health promotion and the prevention of substance use harm. The authors identified four persistent ethical tensions: biomedical or social determinants of health, situational care or the systems approach, respect for persons or stigma and discrimination, and surveillance and social control or trust and autonomy. Practitioners often find their commitment to better health outcomes across population groups is impacted by a misalignment with health systems values such as ethical concerns about health equity and social justice. Knowledge translation in health promotion is complex within the context of systems structures and historically repressive constructs and requires much more sophisticated approaches to adopt knowledge, especially for disenfranchised communities and population groups.
3.5
Co-Design in Health Promotion Practice
The extant literature reveals practice concepts such as co-creation have gained traction in health promotion over the last decade or so. These approaches have emerged in response to the design and implementation of health promotion strategies through engagement with stakeholders, genuine partnership, and citizen control rather than provision of information and consultation. Implicit in emergent health promotion approaches is technology which offers a medium for participants to engage in co-creation and other health promotion approaches. In this way, decision-making power and ultimately empowerment will safeguard the efficiency
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and sustainability of health promotion. Von Heimburg and Ness (2021) highlight this shift in public health thinking which focuses on the nexus of health and well-being and co-creation. For example, these authors use a social justice framework - redistribution, recognition, and representation - to promote equal participation in conversations for real change in population health outcomes. The authors conclude co-creation and health promotion aspire to foster participatory citizenship but juxtaposed to the purpose of health promotion, there remains inequity in the process and outcomes. The authors argue collective humanistic need should be at the center of socially constructed public and democratic institutions. Health promotion can invest in exploring methods to support higher levels of vested stakeholder participation. For example, Darlington and Masson (2021) conducted creative thinking activities to gain insight into how school health promotion professionals perceived and defined co-creation. The authors’ collected documents and illustrations and found co-creation was a multi-dimensional construct based on voluntariness and collaboration informed by a suite of values including diversity, mutual trust, openness, autonomy, freedom, respect and shared expertise, responsibility, and decisionmaking. This bottom-up approach led to unexpected and better health-promoting practices and projects. In response to poor knowledge translation and adoption of practices for better health outcomes, innovative approaches have emerged with a new focus on who the true stakeholders and partners are, citizen control and just and civil societies. Reflection
Equity-centered design as a health promotion practice Health promotion practitioners are increasingly applying “design thinking”. Design thinking refers to “a non-linear, iterative process that teams use to understand users, challenge assumptions, redefine problems and create innovative solutions to prototype and test. Involving five phases—Empathize, Define, Ideate, Prototype and Test—it is most useful to tackle problems that are ill-defined or unknown” (https://www.interaction-design.org/literature/ topics/design-thinking). This approach is criticized however, for relying on the input of typical “users” – which tends to reproduce the ways of thinking and acting of particular people, commonly those who are well educated, relatively wealthy, and tech-savvy. To address these limitations, groups such as those at the Stanford School have championed liberatory design practices that explicitly seek input from relevant equity-seeking groups (e.g., https://uxdesign.cc/ an-introduction-to-liberatory-design-9f5d3fe69ff9). The critical addition in the equity-centred design approach is the addition of phases of reflection that invite analysis of the intended beneficiaries of an intervention and ensuring that they are engaged in the design process. Such processes extend the reach of (continued)
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current “patient-oriented” research efforts through dedicated attention to including the most critical user groups. Designing health promotion interventions through this path helps to ensure that all points of view are “heard and valued” in health promotion (Snow et al. 2018). This approach is now the standard curriculum for the capstone project of the Masters of Public Health students at Simon Fraser University in Vancouver, Canada.
3.6
Evidence and Ethics in Health Promotion Practice
Health promotion aims to be evidence-based. Achieving this aim necessarily involves being both theoretically and methodologically rigorous, embracing diverse forms of knowledge and the processes that generate them, and conducting work within an ethical frame. In the context of scarce resources, such as have been evident throughout the COVID-19 pandemic, priority setting, resource allocation, and the balance between individual rights and collective needs raise critical ethical dilemmas in healthcare and public health (Tulchinsky 2018). What distinguishes public health and health promotion ethics from bioethics? The Canadian Institutes of Health Research Institute of Population and Public Health (nd) generated some early debates by arguing that population and public health ethics (PPHE) overlaps with but differs from traditional bioethics by its focus on populations alongside individuals, interventions outside of the formal healthcare setting and the prevention of illness and disease (rather than its amelioration). Upshur (2012) added to this conceptualization the fact that population and public health embraces the perspective of community as opposed to focusing on the individual, is concerned with the social determinants of health rather than individual agency and responsibility and focuses on systems versus individuals. A Canadian casebook on population and public health ethics prepared a decade ago (CIHR 2012) offers some examples of field-based engagement with PPHE in research, policy, and practice as well as critical commentary on the overall field of PPHE at the time. Case studies reflect upon the ethical issues of outdoor smoke-free policies, a policy that prohibited men who have sex with men from blood donation, mandatory immunizations of public health employees, the lack of potable water in Canadian First Nations communities—among other topics—alongside the ethical issues associated with oil sands production in Canada’s tar sands and lead poisoning epidemic in Nigeria. A case-based approach to exploring and articulating ethical issues is consistent with the multi-disciplinary nature of health promotion and public health, as well as the range of issues that can arise depending on the setting, health topic, and intervention. Indeed, Knight (2016, p. 287) suggests advancing empirical population and public health ethics through iterative processes “in which the normative informs the empirical questions to be asked and new evidence constantly directs the recommendations for morally robust public health practices”.
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Conclusion and Future Direction
This chapter has discussed the art and the science of health promotion practice. In particular, it draws attention to the increasing intricacy of effective practice in complex local and global environments. Every part of daily practice should be scrutinized, broken down, deconstructed, and inspected. It is this idea which can change what health promotion does in a way which ensures constant critique and evolution. Layers of complexity from accessing, understanding, and critiquing science to adapting the evidence to fit the context in a respectful and dignified manner will go a long way to enduring empowerment and control. At the heart of this lies conviction, strong leadership, and a vested interested in making lives and health outcomes better. How do we critique or localize practice issues, for example, evaluation and leadership while attending to broader structural issues such as advocacy and politics? How do we learn to be more critical, reflexive, and to understand new knowledge and emergent approaches in health promotion? The future of health promotion practice is dependent on several things. In no order but centering health promotion front and center as a critical and emancipatory practice of politics and policy, implementation is critical. Alongside this is a strong, resilient, and benchmarked global workforce up to the challenge of increasingly complex practice environments. Equally important is strong leadership: leadership which challenges the status quo, is not afraid to stand up and make noise, and which embodies the population it serves.
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Community Nursing and Global Health Yvonne Parry
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Nursing and Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Community Nursing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Nurse Practitioners (Advanced Nursing Practice) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Global Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Use of Community Nursing in Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Nursing provides the largest direct care and health intervention workforce and as such is a global health resource. Examinations of the International Classification for Nursing Practice (ICNP) have found that community nursing interventions directly address the identified themes related to gaps in healthcare, services, and system’s coverage and continue to support advancements in understanding the complexities of health for individuals, families, and communities. Additionally, nursing in and of itself addresses some global health goals through the provision of meaningful work for mostly women who are provided with income and career opportunities. Thus, nursing can assist in addressing inequities faced by populations with limited access to health and employment. This chapter outlines the role of community health nursing and how community nursing is used to address the global public health agenda. Community health is a nursing speciality that moves healthcare from the acute setting into the community-based health sector. These appropriate and cost-effective responses place community nursing at the forefront of responses to the global health Sustainable Development Goals. Y. Parry (*) Better Communities, Caring Futures Institute, Adelaide, SA, Australia e-mail: yvonne.parry@flinders.edu.au © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_12
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Globally, there is a need for more community nurses as they play a critical role in providing quality healthcare in the community. Community nurses enable the public to access best practice and evidence-based healthcare in their community in easy reach of the population. The research illustrated in this chapter uses community nursing services to directly address the global health agenda. Using examples from the Global North and South, the chapter provides evidence of the impact of community nursing on Global Health. The use of nurses in the community to advance health messaging and health access is foundational in addressing the needs of marginalized and vulnerable populations. Keywords
Community health · Community nursing · Social determinants of health · Global health and nursing
1
Introduction
Globally, most health interventions are conducted by nurses (Wilson et al. 2016; Block et al. 2019). Nurses represent the largest workforce in health (Block et al. 2019; Parry and Button 2020). Nurses form the backbone of all health systems and are the largest group of health employees globally constituting half the health workforce (Cassiani and Lira Neto 2018; Parry and Button 2020). Nurses and nursing play a crucial role in meeting the needs and requirements of both community health and the global health agenda (UN 2015; Cassiani and Lira Neto 2018; Parry and Button 2020). These policy and program initiatives in global health are acutely focused on the links between the social determinants of health (SDH) (Dossey et al. 2019) (Dhavan and Reddy 2017) and the role of poverty, education, and gender on life expectancy and health outcomes (ICN 2017). Community nursing is a growing area of nursing practice and is recognized as an important area of nursing practice by the World Health Organization (Block et al. 2019). This is demonstrated by the inclusion of community nursing in the International Classification of Health Interventions (ICHI) (Block et al. 2019). The ICHI provides a consistent and convenient tool for reporting and analysis of healthcare interventions (Block et al. 2019). The ICHI is a comprehensive undertaking by the WHO to map and analyze the level of health interventions globally. The ICHI information will inform policy directives. Block et al. (2019) found that the WHO ICHI mapped less than the 187 nursing interventions from community nurses. Therefore, not all community nursing interventions provided globally were mapped. Community nursing practice is based on the principles of social justice and ethical and equitable holistic care (Block et al. 2019). Community nursing delivers directly to clients/consumers quality education and health interventions that are inclusive and equitable to promote lifelong health for all, where they live (Harvey et al. 2019; ICN 2017). The alignment of the SDH factors with community nursing provides opportunities to address the needs of those impacted negatively by the SDH. Additionally,
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nurses are educationally prepared to understand and practice health in the broader context (Salvage and White 2020), making healthcare decisions based on the “understandings of ourselves, our patients, and our circumstances” incorporating the broader context of policy, politics, globalization, and the international forces that shape our lives (Salvage and White 2020, p. 2). Nurses play an important role in providing services that are attuned directly to community needs and meet the global health agenda such as the “Sustainable Development Goals 2030” (SDG) (Parry et al. 2020; UN 2015). For example, Goal 3: “Ensure healthy lives and promote well-being for all ages” is achievable through the use of community nursing (Dossey et al. 2019; UN 2015). Community nursing is focused on health interventions such as education and the promotion of health and well-being across the lifespan. In many countries, there are extensive home visiting nurses that support people in their homes from birth to death (Becqué et al. 2021; Teruya et al. 2019). For example, Becqué et al. (2021) found nurses use a variety of methods such as identification of support needs, practical education, emotional support, organizing care, and patient- and family-centered supported decision-making to assist families with home-based end-of-life care for their loved ones. Nurses in the community are acutely aware of their clients and community’s niche needs and are well placed to address these directly through community co-designed health interventions and initiates. Furthermore, the International Council of Nurses (2017), through research and the provision of case studies, has outlined how nurses can impact addressing global health issues through the application of Goal 3 to their professional practice (see the ICN Case study below). The WHO SDG connects directly with Nightingale’s Notes on Nursing (Dossey et al. 2019). Historically, Florence Nightingale situated the role of nurses in the context of providing care that recognized the broader and more complex social and environmental factors impacting an individual’s health (Dossey et al. 2019). Nightingale established the characteristics and factors that impact marginalized communities that we now identify as the social determinants of health (SDH) (Dossey et al. 2019), highlighting the importance of poverty, poor housing, lack of access to clean water, sanitation, and quality food on children’s development and future health (Dossey et al. 2019). Nightingale also recognized the alignment of women’s empowerment as an important factor in the health of their children and others; she noted the impact of emancipation on their [women’s] mental and physical health and called for the improvement of working conditions for nurses (Dossey et al. 2019). The empowerment of women is an SDG as the role of gender equality aims to “achieve gender equality and [the empowerment of] all women and girls” as a basic human right (UN 2015). Nightingale advanced this issue with her own work and deeply pondered women’s experiences in a time when gender equality was mostly non-existent: “Women dream till they no longer have the strength to dream, those dreams against which they so struggle, so honestly, vigorously and conscientiously, and so in vain, yet which are their life, without which they could not have lived” (Dossey et al. 2019, p. 11). Nursing education plays a vital role in lifting women and girls out of poverty through advanced education and gainful employment.
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Community nurses use their influence to change factors at an individual, organizational, and societal level to improve the care and services delivered to individuals, families, and the community (Becqué et al. 2021). Thus, by assisting and enabling nurses in their roles and their care, there can be a flow-on effect for society. Therefore, not only does the empowerment [emancipation] of nurses and nursing benefit global health interventions, but it also improves access to universal health (Cassiani and Lira Neto 2018; Moreno-Lacalle and Locsin 2019). This is achieved through local authorities and communities providing community nurses to improve services that can reduce health inequities and simultaneously improve sustainability and the engagement of women in the workforce (UN 2015). For example, in the “Triple Impact of Nursing Report” (All-Party Parliamentary Group on Global Health), the WHO, EU, and other international agencies call for the: Raise[ing of] the profile of nursing and make it central to health policy. Nurses have an enormous part to play in achieving universal health coverage, and nursing should be central to global policy and plans. (p. 7)
Universal health coverage (UHC) is a major objective for the WHO, and globally, a health reform policy objective in many countries (Parry and Button 2020; Parry and Sivertsen 2021). The cornerstone of global health access and service delivery rests with nurses and nursing through the provision of affordable and timely care (Parry and Button 2020; Cashin 2015; WHO 2018). The ICN (2017, p. 18) states: UHC can only be realised with the leadership and offerings of the nursing workforce. This means involving nurses in more than just clinical practice. It includes involving nursing leadership in policy, in economics and in reform at local, national, and global levels.
Additionally, the aim to provide UHC is paramount in achieving access for many as: • UHC is critical because 1 billion people lack access to basic healthcare • At least 400 million people globally lack access to one or more essential health services • On average about 32% of each country’s health expenditure comes from out-ofpocket payments (p. 20) Despite this, globally nursing has barriers that actively interfere with the profession’s social standing and its cultural acceptability (Santos et al. 2021). In some countries, the role of women in the workplace challenges cultural norms (Abu Jaber 2017). This impacts nursing empowerment (Santos et al. 2021). There remains a foundational need to develop nursing leaders to address health policies and the application of policy to health interventions (Cassiani and Lira Neto 2018). Furthermore, globally there is a need to broaden the role of nurses to provide advanced practice care to meet the needs of health consumers and address global health issues (Cassiani and Lira Neto 2018). The role of nurses is often challenged by the lack of inclusion of nurses in leadership processes and policies. There is an
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ongoing call for nurses to be included in all global health development and advocacy (Hunter et al. 2013). The inclusion of nurses in these types of leadership roles and advanced practice roles has implications for health systems management, nursing education, practice, and research (Hunter et al. 2013). Rosa et al. (2019) highlighted nurses leading the changes required to achieve all 17 of the SDGs along with health equity, social justice, and environmental sustainability, reiterating the role of nurses as global leaders in community healthcare, and global citizens in optimizing the SDG (Rosa et al. 2019), thus outlining the role of nurses in addressing global health.
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Nursing and Global Health
The importance of global health cannot be understated, just as the impact of nursing on global health cannot be underestimated. Salvage and White (2020) highlight the role of nurses during COVID-19 and the significance of nursing in remaining globally focused. The incorporation of the Sustainable Development Goals into nursing practices and roles going forward will be instrumental in meeting global health needs (Edmonson et al. 2017; Salvage and White 2020). Parry and Button (2020) and others outline the importance of nurses and nursing to embrace leadership roles to meet the needs of healthcare systems, reduce the impact of social exclusion (Parry and Sivertsen 2021; Salvage and White 2020), and tackle structural inequalities in health, from policy through to service delivery and access, to name a few (Parry and Sivertsen 2021; Salvage and White 2020; WHO 2018). The central role of nursing in addressing global health challenges needs to be recognized, acknowledged, and promoted. As stated above, the sheer volume of nurses worldwide is a workforce that if utilized effectively could directly impact many global health issues.
2.1
Community Nursing
The specialty of community nursing contextualized care within the broader definitions and provisions of care to meet patients/client/consumer needs. Thus, reviewing the role of community nursing helps to understand the barriers to the uptake of the role (Harvey et al. 2019). There are many opportunities for community nursing to provide nuanced and targeted support for groups in need, for example, the use of family health nurses to provide family-orientated care that is sustainable in the community setting (Martin et al. 2013). This innovative approach moves care from a disease-centric medical model to a family unit approach (Martin et al. 2013). The community-based family health nurse has responsibility for the coordination of care for the family including the assessment, diagnosis, prescribing (advanced practice nurses such as Nurse Practitioners*), and delivery of care (Martin et al. 2013). Here, family health nurses not only provide care for the growing global burden of non-communicable diseases (WHO 2021) but also provide a model of nursing care provision set within a broader global health perspective and promote
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comprehensive health access (Martin et al. 2013). The example below illustrates the role of nursing in the community during a pandemic. During pandemics such as COVID-19, the role of global health and access to support is paramount to human health and well-being outcomes (Parry et al. 2021). The impact of social isolation and family breakdown during pandemics can place a higher focus on health and welfare service provision (Parry et al. 2021). Thus, this requires more proactivity and responsiveness from all service providers (Parry et al. 2021). The quotes from families experiencing homelessness identify the significance of the role of services and nursing provision during crises: I guess so, it’s probably isolated it a bit more. But. . ..I feel like some of my community connections probably got a bit stronger because they were reaching out more and checking in. So even though playgroup finished, there was a social worker at [my child’s] Kindy that I didn’t know about. And when COVID happened, she actually . . . started being a social worker for me through playgroup. So that was amazing, and that was something I didn’t know existed until COVID. And then she was able to help me with this place, get me furniture, and these chairs and things like that. So, I actually had stuff for the house, and she got clothes and things for my child. So, it made a huge difference when I was still trying to get on my feet here, money-wise and stuff like that, because obviously COVID didn’t exactly help with the extra finances and moving. . .. (Parry et al. 2021, pp. 2, 5)
Furthermore, the provision of nursing and nursing students into the community sector service sector aids in the provision of care that directly addresses global health issues – health access, housing, and child development. In Parry, Hill, and Horsfall’s (2018) research into the experiences of nursing students in an embedded community health response: The student nurses very good, just fantastic . . . our clients don’t scare them, and they are so great . . . explaining health, treatment, medications, and they all knew so much it was such a great help to our clients and us as staff. They explained care and how the person would deteriorate, so now we knew what to look out for as well (HS 3). We are trusted . . . the clients trust us and open up to us . . . it was such a surprise to us [nursing students] and the staff (NS 5). The student nurses (NS) were fantastic the best placements we have ever had . . .they’re not afraid of working with difficult clients and the clients really opened up to them, trusted them . . . one client asked about medications and the NS was able to go through each . . . very professional and used language the client could understand . . . it helped him and me to understand some of his issues and possible medications interactions (HS 2). (p. 5)
Community services often need to address a wide variety of multimodal complex needs that include health. This is often beyond the skill set of the staff who focus on responding to broader social needs such as housing. This focus can miss health opportunities. Furthermore, the expansion of nursing roles such as Nurse Practitioners, in the community to provide advanced care, improves the provision of care to marginalized individuals, families, and communities (Parry et al. 2021).
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Nurse Practitioners (Advanced Nursing Practice)
Nurse Practitioners (NP) have extensive specialist training, an expanded scope of practice, and advanced assessments and screening skills that entitle them to provide prescriptions and direct referrals to specialist care (such as pediatricians, surgeons, ophthalmology) and scanning procedures, for example, x-ray and CAT scans (Parry et al. 2020, 2021). The NP in the example below assessed and measured the levels of health need in children accessing homelessness services with their families (Parry et al. 2020, 2021). The NP had extensive pediatric training and were embedded in the community in several community-based homelessness and community care services. This directly addressed the gap in traditional models of health delivery. Parry et al.’s (2021, p. 2) research found “It is clear from these disastrous outcomes that current institutional policies and services do not adequately meet the needs of children and/or families who experience housing instability.” Therefore, the NP role meets the specialty of community nursing by providing the contextualized care compliant with the broader definitions and provisions of care. There is a need to ensure not-for-profit and non-government organizations have embedded health services such as Nurse Practitioners (NP) to address the needs of their population groups. The case study by Bell et al. (2022) below illustrates the impact of an embedded Nurse Practitioner on the health outcomes of children living in homelessness with their families: NP assessment: a 16-year-old male was referred to the homelessness service embedded Nurse Practitioner for a health assessment. He had a PMHx of scoliosis and ankylosing spondylitis, on no regular medication for pain or treatment and had, with his mother, become homeless. A partial cause of the homelessness was the out-of-pocket costs for his health care. He had dropped out of school due to bullying (of classmates), pain and the anxiety of catching public transport to get to school. The examination by the NP stated he was very thin 48kg, obvious curvature of the spine, recent rapid growth had exacerbated the pain, not exercising due to pain, poor nutrition, poor sleep, feelings of anxiety and depression, and not socialising with friends. NP treatment plan: Patient centred care after discussions with the young person and their mother; address fears, concerns and develop goals. Referrals to a new General Practitioner, Paediatric specialist Spinal Surgeon, Dietician, and a paediatric physiotherapist. 2 month follow up: he was walking the family dog for 20 minutes each day, catching public transport, sleeping and diet improvement and had applied for casual work (p. 8). His mother stated: The Nurse Practitioner was fantastic we had seen the same person for such a long time, and it made no difference. She [the NP] got him into a paediatric surgeon straight away. . .new treatment and care with specialists [physiotherapists, dieticians] who know this problem [ankylosing spondylitis]. He walks the dog, he’s out of pain. The change has been a miracle. I honestly don’t know where we would be without her [NP] help.
This community-embedded service directly addresses several of the SDGs, for example, out-of-pocket healthcare costs, health access, and the SDH embraced by global health (Bell et al. 2022; Parry et al. 2020). Thus, the “think global and act local” is deeply embedded in community health services.
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Global health as a unique discipline has developed to analyze, tackle, and solve areas of concern and action (Nicholas and Breakey 2015). Global health addresses the transnational impacts of health and health concerns (Nicholas and Breakey 2015). For example, Nicholas and Breakey (2015) suggest that concerns such as climate change, infectious diseases, and epidemics, along with health inventions such as tobacco control, obesity, and migrant-workers health (and below as suggested the use of child labor), are best addressed through global health. Nurses play a pivotal role in providing community health education to address a multitude of health issues (ICN 2017).
2.3
Global Issues
This section in this chapter briefly illustrates the concept of Global North and South and how research into issues facing the Global South can empower communities to act. The term is defined by Ankers (2022, p. 13) as: Global North/Global South represents one of several naming conventions used to separate countries into those with considerable financial, material, and industrial capacity, and those that do not (Allina 2021). Other naming conventions include first world/third world and developed/developing, which both suggest a superior/deficit dualism, and as such are problematic in their use (Haslam et al. 2021). The North-South distinction has origins in a report by the Brandt Commission on the state of the world from 1980 and 1983, which divided the globe between an affluent north, and a poor south rather than American/Russian influenced states (original distinctions for first world/third world) (Dodds 2014; Willis 2011). The distinction has its own issue as several wealthy ‘developed’ countries exist in the geographic South (such as Australia, New Zealand, and Singapore), as much as there are poorer ‘developing’ nations in the geographic North (for example Afghanistan or North Korea) (Allina 2021; Willis 2011). Despite this, the deficit implied by other naming conventions is reduced when using the Global North/Global South distinction, and has been adopted in this thesis to define differences in financial, material, industrial and political capacity between nations.
It is recognized that the importance of global issues is an important facet of nursing. Globally, the recognition of gender inequality present in the Global South can be addressed through nursing and nursing leadership. As recognized by the ICN and the Triple Impact Report (Gender equity and empowerments ICN p. 24): Nursing as a profession is being used to promote gender equality. Whilst nursing has not and should be seen as an exclusively female profession, women currently make up the vast majority of the nursing workforce. By becoming a nurse, many girls and women around the world are accessing formal education and training programs, obtaining an income and gaining respect within their communities. This sets them free from the poverty cycle. In addition, a competent and qualified, and empowered nursing workforce is helping other women to improve their health and wellbeing. (Triple Impact Report, p. 46)
Nursing provides employment to mostly women with a profession that is the impact of providing women with a professional that is globally recognized cannot be
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understated as it provides access to education that would often not otherwise be available at a level and educational standard that is managed by international standards of practice and with the term “Nurse” protection by regulation authorities and accreditations (ICN 2017). The global standing of nursing and nurse education can provide a vehicle for raising the profile of women and their service to their community. Furthermore, the ability of nursing, community nursing, and research to address issues raised in the concepts of the global North and South is paramount in addressing the context that perpetuates inequity and poverty. One aspect of the ways to address these deficits is to give voice to those impacted by disempowerment. The voice of the disempowered is often missing from global health discussions. Women’s and children’s voices can be missing from global health discussions. For example, the work of Ahad, Parry, and Willis (2021) identifies the impact of child maltreatment as a global health issue, and yet discussions often focus on disrupted childhoods rather than the health outcomes and injuries caused by work and child maltreatment. Child maltreatment has a set of associated risks and psychological harms embedded within it, and its prevalence globally and the impact of the impairments were previously underestimated (Ahad et al. 2021). The use of child labor is ongoing and expanding and has long-term and profound social and health consequences (Ahad et al. 2021). Asian countries have a higher prevalence of the use of child labor and its subsequent child maltreatment (Ahad et al. 2021).
2.4
Use of Community Nursing in Global Public Health
Identifying gaps in service delivery and actively working with communities to address the shortfalls in health is an important aspect of nursing. This is demonstrated in the work to address the deficit in health of children living in homeless families (Parry et al. 2020). As discussed earlier, the ICN (2017) illustrates the use of nursing and community health interventions to meet the global health agenda and the SDG (UN 2015). The following case study excerpt outlines the role of the nurse in this process: Case study – Dr. Katherine Kinsey “Nurses must break down walls between professions to create cost-effective interventions to improve the lives of patients with complex health and social needs.” Two of NNCC’s most successful programs are The Philadelphia Nurse Family Partnership (NFP) and the Mabel Morris Family Home Visit Program (MM-PAT), evidence-based early childhood initiatives serving low-income women and children in some of the most distressed urban neighbourhoods in the United States. Led by public health nurses, these programmes, provide home visiting, family support and education to low-income mothers of young children throughout the city of Philadelphia, Pennsylvania. Each year, the service provides support and care for over 700 mothers and their children. Most clients are teen mothers and are African-American (73%) or Hispanic (21%). The average annual household income for clients is under US$6,000. . . Over 90% of the mothers have experienced three or more Adverse Childhood Experiences (ACEs), such as physical, sexual and/or verbal abuse, living with a mentally ill relative, having an
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incarcerated family member, or witnessing domestic violence. Approximately 45% of the mothers exhibit symptoms of perinatal depression when they enter the programme. . . This led to the development of a new partnership, allying legal assistance to nursing care. . . In this approach, lawyers work hand-in-hand with nurses to ensure that new mothers have the opportunity to raise their children in safe, healthy homes, with uninterrupted access to public benefits. They can develop new skills to support their children’s socioemotional, physical and developmental needs, while also providing legal resources to ensure that each family’s basic needs are met. Working with their nurse, many women set goals for themselves for the first time. (ICN 2017, p. 12)
This shows not only the use of health interventions and social support provided by the nurses but also the extension of the service into truly interdisciplinary practice to provide income and housing stability through the use of legal representation. The example above also demonstrates the application of the Social Determinants of Health to provide broader services that acknowledge the importance of stable income on child development and the needs of the family.
3
Conclusions and Future Directions
Nursing and nurses are central to addressing global health outcomes and promoting well-being, care, and treatment in communities. The role of nursing is widely acknowledged by organizations such as the World Health Organization, not-for-profit organizations, and governments as being able to address global health issues in costeffective and community-centered models of care. Yet, the role of nurses remains undervalued in addressing global health concerns. Nurses’ abilities and capacity to provide multimodal, complex, and interdisciplinary care through family and community inclusive health interventions remain underutilized in addressing the global health agenda. Furthermore, the role of nursing as a vehicle for the empowerment of women and girls through education and gainful employment remains culturally shackled, thus designing women and girls’ vital opportunities and pathways out of poverty. The recognition of the speciality of community nursing provides an important future pathway for nursing and global health as it highlights a shift towards preventive interventions and the focus of community delivered care. This directly addresses the SDH and the SDG. The inclusion of nurses in leadership and policy development will not only provide nurses with roles in leadership but also enshrine community practice as central to addressing the issues of Global North and South health inequities.
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Parry Y, Sivertsen N (2021). Social inclusion and the role of nurses. J Handbook Soc Incl, 1–15. https://www.researchgate.net/publication/353527446_Social_Inclusion_and_The_Role_of_ Nurses Parry YK, Hill P, Horsfall S (2018) Assessing levels of student nurse learning in community based health placement with vulnerable families: knowledge development for future clinical practice. Nurse Educ Pract 32:14–20. https://doi.org/10.1016/j.nepr.2018.06.015. Epub 2018 Jun 30. PMID: 30015302 Parry YK, Willis E, Kendall S, Marriott R, Sivertsen N, Bell A (2020) Addressing the gaps in health for children, innovative health service delivery: enhancing lifelong development and the health and wellbeing of marginalised children 0 to 18 years. Caring Futures Institute, Flinders University. ISBN: 978-1-925562-40-8 https://researchnow.flinders.edu.au/en/publications/ addressing-the-gaps-in-health-for-children-innovative-health-serv Parry Y, Ankers M, Sivertsen N, Willis E (2021a) Where is community during COVID-19? The experiences of families living in housing insecurity. Health Soc Care Community 30(5): e2088–e2096 Parry Y, Willis E, Kendall S, Marriott R, Ankers M (2021b) A nurse practitioner service designed to address the health needs of children living in housing instability: a non-randomised, concurrent mixed methods study protocol. JAN 78(4). https://doi.org/10.1111/jan.15152. https:// onlinelibrary.wiley.com/doi/10.1111/jan.15152 Rosa WE, Kurth AE, Sullivan-Marx E, Shamian J, Shaw HK, Wilson LL, Crisp N (2019) Nursing and midwifery advocacy to lead the United Nations sustainable development agenda. Nurs Outlook 67(6):628–641. https://doi.org/10.1016/j.outlook.2019.06.013 Salvage J, White J (2020) Our future is global: nursing leadership and global health. Rev Lat Am Enfermagem 28:e3339. https://doi.org/10.1590/1518-8345.4542.3339. Epub 2020 Aug 31. PMID: 32876292; PMCID: PMC7458571. https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC7458571/ Santos RK, Macedo E, Araujo BR, Lima AAA, Linch GFC, Caregnato RCA (2021) Nursing Now campaign and its impact on nursing education in a federal university. Rev Gaúcha Enferm 42 (spe):e20200028. https://doi.org/10.1590/1983-1447.2021.20200028 Teruya N, Sunagawa Y, Sunagawa H, Toyosato T et al (2019) Asia Pac J Oncol Nurs 6(4):389–396. https://doi.org/10.4103/apjon.apjon_18_19. PMID: 31572759; PMCID: PMC6696802 United Nations, (2015). Transforming our world: the 2030 agenda for sustainable development. [internet]. 2015 [cited Apr 2, 2020]. Available from https://sustainabledevelopment.un.org/ post2015/transformingourworld WHO, T. W. H. O. (2021, 13 April 2021). Noncommunicable diseases. Retrieved 12 Oct 2021 from https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases Wilson L, Mendes IAC, Klopper H, Catrambone C, Al-Maaitah R, Norton ME, Hill M (2016) ‘Global health’ and ‘global nursing’: proposed definitions from the global advisory panel on the future of nursing. J Adv Nurs 72(7):1529–1540. https://doi.org/10.1111/jan.12973 World Health Organization [WHO] (2018) A vision for primary health care in the 21st century: towards universal health coverage and the Sustainable Development Goals. World Health Organization and the United Nations Children’s Fund (UNICEF), Geneva, 2018 (WHO/HIS/ SDS/2018.X). Licence: CC BY-NC-SA 3.0 IGO. https://www.who.int/docs/default-source/ primary-health/vision.pdf
Primary Health Care Elizabeth Halcomb and Christine Ashley
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Defining Primary Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Focusing on PHC . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3 The Importance of PHC in the Current Context . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Components of PHC . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Integrated Health Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Multi-Sectoral Policies and Action . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Empowered People and Communities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 PHC in Action . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Strategic Levers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Operational Levers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Primary Health Care (PHC) is a whole of society approach to health and wellbeing that is focused on the needs and circumstances of individuals, their families, and communities. PHC principles guide health professionals in facilitating equitable conditions that redress social disadvantage and support good health in a socially just way. Health professionals provide PHC using an enabling role, where they work in partnership with people and communities to develop individual and community capacity. Strong PHC systems improve the health outcomes of the whole community and represent efficient use of limited health resources. This chapter defines PHC, highlights the importance of PHC to society and discusses the strategic and operational levers that are required to ensure effective PHC systems. Understanding these contextual factors is vital in terms of E. Halcomb (*) · C. Ashley School of Nursing, University of Wollongong, Wollongong, NSW, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_13
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promoting health for all and attaining the sustainable development goals related to health. Keywords
Primary health care · Integrated health services · Coordinated care · Health system
1
Introduction
Article 25 of the Universal Declaration on Human Rights states that “everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services” (United Nations 1948). To achieve this standard, the complex interplay of multiple factors in the global community have led to the major focus on primary health care (PHC) as a foundation component toward achieving universal health care (UHC), rooted within commitments to social justice, equity, and participation (World Health Organization and United Nations Children’s Fund 2018). This chapter will define PHC, describe the importance of PHC to society and discuss the core components of PHC systems. In addition, the chapter will explore the strategic and operational levers required to ensure effective PHC systems.
1.1
Defining Primary Health Care
PHC was most famously defined in the 1978 Declaration of Alma-Ata as: essential health care based on practical, scientifically sound and socially acceptable methods and technology made universally accessible to individuals and families in the community through their full participation and at a cost that the community and country can afford to maintain at every stage of their development in the spirit of self-reliance and selfdetermination (World Health Organization 1978).
The concept of PHC has been debated and revised repeatedly since the Alma-Ata Declaration (World Health Organization and United Nations Children’s Fund 2018) and, in different contexts, the notion of PHC has somewhat different meanings. In 2018, some 40 years after the Declaration of Alma-Ata, the United Nations Children’s Fund (UNICEF) and the World Health Organization (WHO) jointly hosted the Astana conference in Kazakhstan. This saw the launch of the Astana Declaration on PHC to redefine PHC and launch a call to the world’s governments to give high priority in coordinating future PHC efforts (World Health Organization and United Nations Children’s Fund 2018): PHC is a whole-of-society approach to health that aims at ensuring the highest possible level of health and well-being and their equitable distribution by focusing on people’s needs and
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as early as possible along the continuum from health promotion and disease prevention to treatment, rehabilitation and palliative care, and as close as feasible to people’s everyday environment (World Health Organization and United Nations Children’s Fund 2018) (p. viii).
The revised definition emphasizes the needs and circumstances of individuals, their families, and communities, and the provision of whole of person care across the lifespan and the domains of physical, mental, and social health and well-being. This includes focusing on people’s needs and preferences (De Maeseneer et al. 2020; World Health Organization and United Nations Children’s Fund 2018) and includes the broad provision of health promotion, prevention, and treatment rather than a focus on specific disease processes.
1.2
Focusing on PHC
The priority focus on PHC is seen by the WHO as crucial for three key reasons, namely; 1. “The features of PHC allow the health system to adapt and respond to a complex and rapidly changing world. 2. With its emphasis on promotion and prevention, addressing determinants, and a peoplecentered approach, PHC has proven to be a highly effective and efficient way to address the main causes of, and risk factors for, poor health, as well as for handling the emerging challenges that may threaten health in the future. 3. UHC and the health-related sustainable development goals (SDGs) can only be sustainably achieved with a stronger emphasis on PHC” (World Health Organization and United Nations Children’s Fund 2018)(p. viii).
The WHO (2018a, b) describes PHC as having three inter-related, synergistic components. Firstly, addressing the health needs of individuals through integrated and comprehensive care across the lifespan. This includes strategically prioritizing health services for people and their families via primary care, and communities through public health services. Secondly, using evidence-based policies and actions to systematically address the broader determinants of health. Finally, empowering people, families, and communities to advocate for policies that promote health and well-being and co-design health and social services to meet their needs. These three components lay the foundation to achieve universal health coverage and address health-related SDGs. The World Health Organization and United Nations Children’s Fund (2018) vision of PHC firmly places individuals, families and communities at the center of care. Additionally, the focussed efforts to address the needs of those at most disadvantage highlights the commitment to social justice and the fundamental right of good health for all. The recent COVID-19 global pandemic has placed great pressure on health systems internationally and highlighted the need for investment in resilient systems of healthcare with a strong PHC foundation (World Health Organization and
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United Nations Children’s Fund 2018). Further, from a financial perspective, the comparatively low cost of providing PHC services can reduce the need for subsequent costly interventions (World Health Organization and United Nations Children’s Fund 2018). The WHO has linked PHC to improved health outcomes, better equity of health care services, increased health security, and greater cost-efficiency (World Health Organization and United Nations Children’s Fund 2022). Following the Astana conference in 2018, the member states of the WHO reaffirmed their commitment to PHC as a foundation of sustainable health systems, to provide health for all and address the health-related SDGs (World Health Organization and United Nations Children’s Fund 2018).
1.3
The Importance of PHC in the Current Context
The importance of integrated and well-established PHC systems has been particularly highlighted during the global COVID-19 pandemic. PHC systems have been fundamental in responding to the pandemic and for maintaining essential health services (Langlois et al. 2020). Much of the focus during the pandemic has been on acute care provision, hospital capacity and supplies, with much less attention placed on the capacity of PHC to support communities (Ashley et al. 2021; Halcomb et al. 2020). In many countries, there was an initial lack of support and investment in PHC to support the pandemic response leading to service disruption, especially for vulnerable groups (World Health Organization and United Nations Children’s Fund 2022). In contrast, strong health systems that have a focus on PHC maintained access to essential services, minimized complications, and potentially reduced deaths from COVID-19. Additionally, PHC continues to play a key role in providing COVID-19 and other vaccination programs across the community.
2
Components of PHC
In its vision for PHC in the twenty-first century, the WHO has identified three key components of PHC. These are integrated health services, multi-sectoral policies and action, and empowered people and communities (World Health Organization and United Nations Children’s Fund 2018).
2.1
Integrated Health Services
The first component of PHC is “the delivery of quality health services that respond to the needs and preferences of people, at both the population and individual level” (World Health Organization and United Nations Children’s Fund 2018, p. 13). By delivering health care in the community through primary care and across the community through population-based services, PHC requires integration and coordination to optimize outcomes for individuals, families, and also the broader public
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health issue and the needs of particular community groups (World Health Organization 2022). There is also increasing evidence of the positive impact and better health outcomes of implementing equity-oriented health services (Ford-Gilboe et al. 2018).
2.1.1 Primary Care Primary care, often referred to as general or family practice, is usually the first point of contact by a person with the health care system. In this setting, a multidisciplinary team supports individual to identify and prioritize care goals to ensure that a personcentered approach to health and well-being is taken. This may include the integration of aspects of traditional medicine that are safe and effective (World Health Organization and United Nations Children’s Fund 2018). Health professionals, such as doctors, nurses, and allied health professionals, assess health needs and provide safe, efficient, evidence-based, and cost-effective treatment or referral to specialist services for those who require them (World Health Organization and United Nations Children’s Fund 2018). However, for primary care to be seen as a viable first point of contact, it is important that there are financial incentives for consumers to attend (at low or no cost), and that primary care provides timely access to other levels of specialist care and health services when required. As people are often seen by the same primary care health professionals over time, continuity of care and relational continuity results. People and their primary care professionals build trust and rapport, enabling stronger relationships and deeper communication. This supports health professionals in better understanding individual beliefs, behaviors, and preferences, and ensuring that these are incorporated into the care delivered. Such continuity has been shown to reduce emergency department presentations and hospital admissions, decrease hospital length of stay, lower health care costs, increase accountability, and improve consumer and provider satisfaction (World Health Organization and United Nations Children’s Fund 2018). A key function of primary care is to coordinate service delivery across health and social care services. This is an important role given the evidence that demonstrates the risks to outcomes at transition points such as hospital discharge if fragmentation occurs. Coordination of service delivery also enables the best utilization of resources by encompassing available public/private models and for-profit/not-for-profit services. 2.1.2 Population-Based Services Population-based health services take a public health approach to address issues of health and well-being on a community wide scale. Such public health activities include health promotion, disease prevention, health protection, surveillance and response and emergency preparedness (World Health Organization and United Nations Children’s Fund 2018). Health protection addresses potential threats to health via risk assessment and reducing exposure to hazards by ensuring safety from environmental factors, exposure to toxic substances, road safety, and access to safe food supplies (World Health Organization and United Nations Children’s Fund 2018). It also encompasses
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consumer safety in the delivery of health care. Health protection focuses on influencing the physical and social environment to promote healthy living. In contrast, health promotion supports people to enhance the control they have over their health by building health literacy and promoting self-management capacity. Health promotion also seeks to intervene to provide social and environmental contexts that support health and well-being. Health promotion can either be “selective” (i.e., focused on a specific group) or “comprehensive” (i.e., a whole-of-community approach). For example, a selective program could be undertaken to reduce smoking in young people, while a comprehensive approach might seek to change dietary habits across a country by implementing a sugar tax, regulating junk food advertising, and promoting healthy food choices. Disease prevention may also be delivered at an individual or a specific population level and is linked to health promotion and care delivery. Examples include individual diabetes monitoring of high-risk groups by primary care health professionals and national government-run bowel screening programs. Surveillance and response combine monitoring and prevention aspects. In recent times the value of emergency preparedness has become more apparent with the global COVID-19 pandemic, monkeypox spread, and climate emergencies such as bushfires and floods. In general, however, emergency preparedness seeks to prepare for any situation that can cause a sudden surge for health service demand and strain resources and health system infrastructure. Having resilient and robust systems for emergency preparedness is important in supporting the health and well-being of communities and individuals and minimizing detrimental impacts.
2.2
Multi-Sectoral Policies and Action
The second component of PHC relates to the policy choices made and actions taken by non-health sectors such as finance, industry, education, transport, urban planning, and agriculture, which impact the health of populations – either deliberately or unexpectedly. The interaction of social, economic, and environmental determinants, which may lie outside the influence of the health sector, highlights the need for a PHC approach to actively engage in policy development with other sectors, and ensure that decision-making factors in the impact on health (World Health Organization and United Nations Children’s Fund 2018). For example, pollution is known to be responsible for nine million premature deaths each year (Fuller et al. 2022), poor sanitation results in 775,000 annual deaths with 46% of the world not having access to safely managed sanitation (Ritchie and Roser 2021), and approximately nine million people die of hunger and related diseases (World Food Programme 2022). One in nine people are affected by hunger worldwide, with 10.8% of the world’s population being undernourished (Food and Agriculture Organization of the United Nations 2022). Recent Australian research has also confirmed the relationship between health risk factors and the neighborhood environment. Where people live may support or hinder opportunities to be physically active, access healthy foods, and travel to work, as well as their physical and mental health (Astell-Burt and Feng 2019; Australian Institute of Health and Welfare 2022a).
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These risks to health and well-being are strongly related to poverty and inequality and demonstrate the essential need for policies and action across multiple sectors. Positive examples where this has occurred include the reduction in deaths from smoking through national campaigns for tobacco control (Australian Government Department of Health and Aged Care 2022; World Health Organization and United Nations Children’s Fund 2018), the introduction of road safety measures (Australian Government Department of Infrastructure et al. 2022), and environmental factors relating to climate change such as tree planting in urban environments and financial incentives to use renewable energy sources (Nordh and Olafsson 2021; US Energy Information Administration 2022).
2.3
Empowered People and Communities
The third component of PHC addresses empowering people and communities. This sees community members and health professionals working together with equal status to plan and implement activities to support health and wellness in the community. This approach allows the community to help set the priorities of health care (Behera and Prasad 2022). People increasingly express an interest in the identification of health priority areas and how these identified priorities are addressed in their community. As people are now better connected and able to access information via the internet and social media, they assert their rights and demand accountability. PHC seeks to empower people, via evidence-based health education and information, to improve health literacy and build capacity for self-management. However, care must be taken to ensure that those who are most vulnerable are included in both community consultation and health education to ensure that they too can express their perceptions and gain access to health information. The World Health Organization and United Nations Children’s Fund (2018) identifies that people and their communities can actively participate in supporting health and well-being as advocates for policy and action, co-developers of health services, and carers of themselves and others. People and communities need to contribute to the development and implementation of policies that support health and well-being and reflect community preferences. Effective advocacy for positive health policy requires people in the political and economic sectors at local, regional, and national levels to hear the needs and preferences of the people and translate this into policy. Examples of where this has effectively occurred include programs for the management of AIDS in sub-Saharan Africa (Shilubane and Geyer 2014). South Africa, arguably, carries the highest burden of HIV and AIDS in the world. Initially, they took an inflexible biomedical approach to disease control, which was found to be ineffective at controlling the pandemic. With the establishment of the South African National AIDS Council (SANAC) a new of era of multi-sectoral engagement began. SANAC provided a platform to facilitate the South African government to engage with non-government organizations, religious groups, traditional leaders and healers, women’s and men’s
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groups, and universities in addressing the AIDS pandemic (Shilubane and Geyer 2014). To ensure that health services respond to the needs of the people in the community who they are intended to serve, consumers should be engaged in the organization, regulation, and delivery of these services (World Health Organization and United Nations Children’s Fund 2018). Involvement can vary from consumer committees, consultation partners or cultural panels to consumers and consumer groups who co-design services. Such community engagement can increase consumer satisfaction, improve outcomes, and optimize cost-effectiveness (World Health Organization and United Nations Children’s Fund 2018). This is especially important when vulnerable or marginalized groups are engaged whose needs might not be met by services without consumer engagement (e.g., Indigenous peoples, people who identify as gender diverse). Examples of significant gains can be seen in countries where Indigenous peoples have been engaged to work with health services to ensure that care is delivered in a culturally safe and appropriate manner. The key to effective consumer engagement is that there needs to be a legitimate and meaningful representation that engages with diverse people who represent the most disadvantaged groups in the community. Although bottom-up approaches, where ideas emerge from and through the community, are often most effective, this requires an empowered and health-literate community (World Health Organization and United Nations Children’s Fund 2018). Initially, top-down approaches to seek and promote consumer engagement may be required to drive a cultural shift to meaningfully engaging consumer groups. Individuals have a key role in managing their own health and providing informal care to those around them. Social media and internet access to health information has allowed people access to health information much more readily than ever before. Technologies, such as point-of-care diagnostics, artificial intelligence, and low-cost genetic testing also provide people with ready access to a range of data that would have been previously unattainable (World Health Organization and United Nations Children’s Fund 2018). This combines to create new possibilities about the scope of self-care. Given PHC’s focus on supporting self-care and caregiving, people must have the knowledge, skills, and resources to meet their needs and circumstances. This includes health literacy, reliable information, financial resources, and access to health professionals who can assist in analyzing information, weighing up costs and benefits, and navigating complex decisions. Health professionals also need to be accessible to advocate for those with low literacy or who are socially excluded, to make evidence-informed decisions.
3
PHC in Action
Since the adoption of the Alma Ata Declaration in 1978 (World Health Organization 1978), a range of evidence has emerged, which provides insights into key factors that have enabled or hindered the development of successful PHC systems. Drawing on this, the World Health Organization (2020) has identified actions and interventions to
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support meeting its vision for PHC in the twenty-first century. These consist of evidence-based strategic and operational levers, which draw on the PHC components identified above and provide a framework for PHC systems nationally and at a community level. These actions and interventions are not intended to operate in isolation, but rather synergistically operate to enable each other (World Health Organization 2020). Health professionals must understand these levers to ensure that they optimize the development of PHC in their setting.
3.1
Strategic Levers
At a strategic level, the four core levers are: political commitment and leadership; governance and policy formulation; funding and allocation of resources; and engagement of communities and other stakeholders. These levers provide the framework to ensure that actions and commitments are in place for the operationalization of PHC within individual countries and their communities.
3.1.1 Political Commitment and Leadership While there have been high-level political statements and commitments to PHC, universal health care, and health for all, there are recognized shortfalls and challenges at national levels in many countries (Alpert et al. 2020; World Health Organization and United Nations Children’s Fund 2018). While a commitment from politicians to the health sector is necessary, to effect real change requires leadership that engages beyond the health sector involving national and state/local political leaders, community and religious leaders, and leaders representing disadvantaged groups (World Health Organization 2020). The importance and value of PHC means that PHC must be treated as a priority and reflected in national policy and planning, which supports integrated health systems. Health systems have also often been skewed both financially and politically toward acute or tertiary health care delivery rather than PHC. Refocusing on PHC requires embracing a new vision for the way that health services are provided and reprioritizing resources and systems (World Health Organization 2020). 3.1.2 Governance and Policy Formulation Strategically, it is important that political governance structures, policy frameworks, and regulations support PHC and are embedded in health planning. Such structures must also include processes for high-level continuous monitoring and evaluation that can draw on evidence produced by local quality improvement and monitoring processes (World Health Organization 2020). The adoption of the “Health in all Policies” approach (World Health Organization 2018b; World Health Organization and United Nations Children’s Fund 2018), where integrated, sustained approaches to the determinants of health are reflected across all policy documents, has demonstrated positive outcomes in several countries and regions, including Namibia and Zambia, California (USA), South Australia, Quebec, Finland, and Wales (World Health Organization 2018b). However, where challenges such as issues relating to
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accountability, health resource management, and decision-making barriers are reported (Masefield et al. 2020), these governance issues may stand in the way of equitable health access and quality PHC. There is also a need for frameworks and structures to consider the growing range of stakeholders in the PHC sector. In particular, there is a need to recognize the important role that the private (including the not-for-profit sector) plays in delivering PHC in many countries, estimated to average around 40% across 65 countries surveyed by the World Health Organization (2020). Further, in many developing nations, governments have traditionally focused on the delivery of health care. However, with the growing number of other health providers in the private sector, governance and policy formulation has needed to refocus on engagement with other providers to reflect evolving PHC goals.
3.1.3 Funding and Resource Allocation PHC provides the most financially efficient strategy to achieve universal health coverage, can improve health outcomes at a lower cost than acute hospital and secondary care, and helps to reduce unnecessary hospitalizations (Commonwealth of Australia 2022). Countries with strong PHC systems have been shown to have better health outcomes (Commonwealth of Australia 2022). However, funding for PHC globally remains insufficient (World Health Organization 2020), with the limited evidence available indicating that governments in low-income countries for which data are available, spent less than US$50 per capita on PHC in 2016 (World Health Organization 2020). Globally, there are significant variations in how health funding and resources are allocated, depending on a range of economic and political factors. There are often significant inequities in the allocation of health funding across sectors, with hospitals and tertiary healthcare often receiving the greatest proportions of the health budget. However, increasing the resources available for PHC and using them most effectively requires high-level health financing strategies that encompass the entire health sector (World Health Organization 2020), and include rational allocation across all areas of PHC and multi-sectoral engagement and integration. 3.1.4 Engagement of Communities and Other Stakeholders The purpose of strategic engagement is to open dialogue with policymakers, identify and acknowledge the interests and priorities of multiple high-level stakeholders and communities to align shared goals, and encourage stakeholders to take ownership of their roles in service delivery. The establishment of committees, partnering with stakeholders and helping to improve health literacy and capacity across communities to encourage community participation, are effective actions to increase levels of engagement (Blignault et al. 2017). Engagement also means working with those who may not have aligned goals. For example, when conflicts of interest may occur between private and public health providers, where there is an abuse of market power, or where individuals or communities may be influenced by commercial interests (World Health Organization 2020). The presence of regulatory bodies and policy frameworks developed collaboratively with stakeholder engagement provides
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important mechanisms in addressing any conflicts and protecting the integrity of health services.
3.2
Operational Levers
The ten operational levers identified by the WHO are:
3.2.1 Models of Care Successful PHC models of care include consideration of how providers are organized, and how services are managed (World Health Organization 2020). Models must consider the specific health priorities of a community. They need to be tailored to local contexts, and flexible enough to evolve according to changing health needs, existing and emerging health problems, health priorities, and outcomes of continuous monitoring of performance (Butler et al. 2021). More than one PHC model may coexist within a health system as a result of changing population health needs and contexts. The aim should always be to ensure that individuals receive the most appropriate health care from the right health professional in the most appropriate location (Butler et al. 2021). Many PHC models are designed with primary care providers (usually doctors or nurses) providing direct care, but also being gatekeepers responsible for coordinating care and referring on to specialists or other care providers (Linden et al. 2003). PHC models of care also need to be oriented to where people live, with a focus on providing holistic person-centered rather than disease-specific care and incorporating teams of multidisciplinary health professionals (Appleyard and Rawaf 2015). 3.2.2 The PHC Workforce The PHC workforce provides health promotion, treatment, rehabilitation, palliative and end-of-life care within community settings. The workforce may also provide public health services. The PHC system relies on a well-educated and trained workforce that works to the full extent of their scope of practice and a provider skill mix that meets the local needs and enables the delivery of quality personcentered care in diverse settings. The WHO (2018a) describes the essential dimensions of the PHC workforce as being available, accessible, acceptable, and able to provide quality care (World Health Organization 2018a). The availability of the workforce requires a sufficient supply of health professionals with the requisite skills and competence to meet the health needs of specific populations. The overall picture at global, regional, national, and local levels indicates that the current shortages of health care professionals worldwide impact on PHC provision (World Health Organization 2018a). There are also imbalances in the composition of the PHC health workforce, such as shortages of doctors, which directly impacts PHC provision. There are, however, many examples of innovative models designed to best meet community needs using available workforces. An example of this is the introduction of nurse-led walk-in
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centers in Canberra Australia for minor injuries and acute disease to overcome shortages of doctors (Annonymous. 2020). An accessible workforce means there needs to be an adequate and equitable distribution of health professionals across communities providing services that meet the needs of individuals, families and communities. This also includes suitable referral mechanisms to accessible services. A key factor in determining the accessibility of PHC services often relates to geography, with rural, remote, or isolated communities often facing disadvantage as a result of the lack of local services or direct access to health professionals (Australian Institute of Health and Welfare 2022b; Hussain et al. 2015). Even in highly developed countries, there is a significant and growing gap in access to appropriate health services for vulnerable groups, such as Indigenous people, people who identify as gender diverse, people with language difficulties, and those with disabilities. The homeless, unemployed or otherwise socially disadvantaged are also likely to experience accessibility issues due to costs involved to access PHC, transport needs, and the availability of free or low-cost PHC services (Corscadden et al. 2017). An accessible PHC workforce is vital in ensuring that the health outcomes of individuals and communities are not adversely affected. The last decade has seen the introduction of telehealth as part of the solution to improve access to health care, using various models including the use of telephone or video consultations with consumers in their homes, or with consultations in local clinics with health professionals located in other settings (Bishop et al. 2013). The uptake of telehealth has significantly increased during the COVID-19 pandemic, providing a safe means for PHC to continue to be provided during times of lockdown or to prevent the spread of infection (Fisk et al. 2020; James et al. 2021). Acceptability of the workforce means that the workforce can provide personcentered care that is culturally safe and sensitive to the diversity needs of individuals and communities. An example of services providing culturally safe care are the Aboriginal Community Controlled Health Services (ACCHS) in Australia, which provide comprehensive, culturally appropriate PHC to Aboriginal and Torres Strait Islander people and communities. These ACCHS have made important contributions to improving the health outcomes of Australian Indigenous peoples (Campbell et al. 2018). The quality of the workforce is, therefore, partly addressed by demonstration of the competencies, skills, knowledge, and behavior of PHC professionals according to established standards. Standards may reflect those set by government, individual professions, or by professional organizations (Australian Commission on Safety and Quality in Health Care 2021). Ongoing quality is assured locally by the provision of education and access to lifelong learning by employers and other education providers.
3.2.3 Physical Infrastructure Meeting the vision for the delivery of PHC for all requires accessible quality health facilities that are well designed and equipped. However, the delivery of PHC in rural, remote, socially disadvantaged, and underdeveloped settings is challenged by the
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frequent lack of basic necessities (Prastuti et al. 2019). The physical infrastructure of buildings must be fit for purpose for the delivery of safe and effective health care, designed and maintained to meet national building codes and with adequate space. This was particularly highlighted during the pandemic with the requirement to socially distance. Buildings should also be accessible to all, located on safe roads with access to public transport and/or with available parking, access ramps, or elevators. Security should also be in place to protect the property and those using the facilities (World Health Organization 2020). The WHO has identified a reliable power supply with backup facilities as being critical to ensuring the accessibility of medical technologies. Therefore, reliable power is an important determinant of the effective delivery of essential PHC health services (World Health Organization 2015). The COVID-19 pandemic has highlighted the importance of reliable power supplies for refrigeration and the capacity to maintain cold chains for the storage and distribution of vaccines. Electricity together with connectivity to telecommunications also enables mobile and telehealth applications and facilitates the delivery of public health education and information and the capacity for secure data recording and storage. Access to clean water, sanitation, and waste disposal are also essential in providing quality PHC.
3.2.4 Medicines, Products, and Technologies The delivery of PHC depends on access to medicines and other health products to support the delivery of care (World Health Organization 2020). While most developed nations have robust national regulatory frameworks in place to ensure the safety, efficacy, and quality of these, substandard products and medicines still abound in many parts of the world. These undermine the provision of quality PHC and may be unsafe and ineffective. The incidence of substandard medical products is increasing, in part due to the complexity of globalized manufacturing and distribution systems. It is estimated that there are hundreds of thousands of deaths each year from the use of substandard medicines alone (World Health Organization 2017). While some studies have calculated the incidental deaths globally of children from childhood pneumonia following treatment with falsified antibiotics, and the health and economic impact of substandard antimalarials in Sub-Saharan Africa, further research is needed to fully investigate the impact of other poor quality products and technologies used in PHC (World Health Organization 2017). Costs, procurement, and supply chains also impact PHC delivery. Procurement processes that favor generic medicines assist in the availability of quality products at affordable prices. PHC is also dependent on efficient supply chains to ensure the availability of products. This was highlighted during the first months of the COVID19 pandemic when there were worldwide shortages of masks and other personal protective equipment, with reports that the PHC sector was particularly disadvantaged (Martin-Delgado et al. 2020; Nicholson 2021). The COVID-19 pandemic also highlighted the inequitable supply chains for the distribution of vaccines and COVID-19 testing kits. Reports in September 2021 identified that while 61.5% of people in the world’s highest-income countries had received at least one COVID-19
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vaccine dose, only 3.3% of people in the world’s lowest-income countries had been vaccinated (Meyer 2021; OECD 2021). While managing costs, implementing fair procurement processes and supplychain management requires effective policies at government and local levels, at an operational level PHC professionals can further safeguard the delivery of care. Availability of standards and guidelines, and education and training relating to checking and safe use of health products ensure a consistent approach to safety and quality. The COVID-19 pandemic has further highlighted the need for direct involvement by PHC providers at a local level in the management of health emergencies and the capacity to mobilize technologies and supplies.
3.2.5 Engagement with Private Sector Providers Between 40% and 70% of services in PHC are delivered by the private sector (World Health Organization 2020). The scale and scope of these private sector services includes the delivery of health-related services, medicines and health products, health insurance, supply chain management, workforce education and training, information technology, and infrastructure/support services (World Health Organization 2020). Effective processes for engagement between governments and the private sector are therefore essential to ensure a “win-win” situation. National policies, guidelines, and principles must be established to avoid potential conflicts of interest, which may benefit commercial interests and to provide incentives, such as tax benefits, to promote access to private sector services. At an operational level, in many countries, PHC professionals are self-employed or work in small business environments (Guzys et al. 2020). Others may be employed by not-for-profit organizations or charities. This may impact how services are delivered and promote an emphasis on the delivery of services that attract funding from the government or other sources. 3.2.6 Purchasing and Payment Systems The purchasing and payment of services in the PHC sector is complex. It involves consideration of what is to be purchased, for and by whom, at what price and how is it to be purchased (Satria et al. 2018). Consideration must also be given to the diverse range of individual items, programs and services, and the potential mix of public/ private service providers (Choudhry et al. 2021). However, strategic purchasing combined with contracting and procurement processes should ideally focus on the integration of health services prioritizing interventions for the entire population. There are many different payment models such as line item and global budgets, fee-for-service and capitation payments (Satria et al. 2018; World Health Organization 2020). Each method has strengths and weaknesses, and many countries are now moving toward blended payment systems for PHC as these provide flexibility to enable consistency with the philosophies of PHC (Johnson et al. 2006; World Health Organization 2020). Incentivization schemes are also becoming popular in PHC, with payments aligned to achieve predetermined goals and health outcomes (Wright et al. 2021). However, to date, there is limited evidence that incentivization improves the quality of care (Wright 2012).
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3.2.7 Digital Technologies The revolution in information and communications technology over the last two decades has had a profound impact on the delivery of PHC and has significantly increased the effectiveness and efficiency of integrated health services. A mobile phone is used by more than eight in ten people living in developing countries and the internet is accessed by nearly half of the worlds’ population (World Health Organization 2020). Even in sub-Saharan Africa where there is the lowest mobile phone penetration, there are 78 mobile phone accounts per 100 people (World Health Organization 2020). Access to technology has played a key role in shifting the power balance between health care professionals and consumers by empowering communities and individuals to take control of their health through sharing information, enabling self-management, and providing education to consumers and health professionals. While this has had positive impacts in most developed nations, an imbalance still exists in many parts of the world where information is not available in local languages. In addition, limitations in health literacy affects the impact of technology on health service delivery. Since eHealth has been introduced, countries have benefited from centralized systems for consumer identification and information, personal health tracking, follow-up reminder systems, and identification of health issues by population. Additionally, e-prescriptions remove reliance on paper-based scripts, enable tracking of prescription use, and increase efficiency for consumers and providers. The COVID-19 pandemic has highlighted the value and capacity of telehealth to revolutionize the delivery of PHC into the future (James et al. 2021). Telehealth is a broad term that refers to the use of communication technology to undertake consultations via phone, video, online platforms, text messaging, or email (James et al. 2021). It may include sharing audio, images, or data between a consumer and a health professional as part of a health consultation (Kichloo et al. 2020; RACGP 2022). The increase in telehealth use during the pandemic has demonstrated its acceptability by communities by enabling easier access to health professionals, reducing the need for people to travel long distances, and reducing lost work time and costs associated with attending a health professional face-to-face (Kichloo et al. 2020; Powell et al. 2017; RACGP 2022). Health professionals have also identified its benefits reducing potential spread of viruses, and enabling flexibility in care provision (Odendaal et al. 2020; Thomas et al. 2020). It has also been found to be cost-effective and to have positive health outcomes (Bishop et al. 2013; Walia et al. 2021). Advances in technology over the last decade have enabled the use of interactive and monitoring devices to record and transmit data directly from consumers to health professionals as part of ongoing care. In PHC, this is beneficial for people with chronic conditions, such as hypertension and diabetes, by enabling real-time monitoring (Walia et al. 2021). The adoption of user-friendly technologies, including automated algorithmic clinical tools for real-time communication between consumers and care teams assist in improving access to PHC (Schwarz et al. 2020). Technology has also been used in unexpected innovative new ways to assist in better delivery of PHC services in some developing countries. In Rwanda, drones are
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successfully being used to deliver pharmaceutical and other health care provisions to difficult-to-access communities (Bosiocic 2022; Shepherd 2022). Efforts to use similar technology for pharmaceutical deliveries to remote communities in some developed nations such as Australia, however, have been restricted due to concerns relating to their safety, and lack of policies and regulations regarding air corridors, where drones can fly and what they can carry as well as the management of data security (Bosiocic 2022). Technological advances have also played an important role in simplifying and streamlining financial services associated with PHC, ordering and supply of equipment, human resource management, and the gathering and storage of data to assist in research and business planning (World Health Organization 2020). These, together with the upscaling of telehealth during the COVID-19 pandemic, suggest that technology will increasingly provide the world with flexibility, access, and potential cost savings for the delivery of PHC in the future (Walia et al. 2021).
3.2.8 Systems for Improving Quality of Care Quality PHC systems consistently deliver safe and people-centered services that are trusted and valued by the communities they serve. Interventions are scientifically sound, practical and socially accepted, and improve health outcomes for all. Quality health systems are also characterized by being timely, efficient and equitable, and are the result of well-organized health services, supported by other effective services such as human resources, infrastructure, pharmaceuticals, and equipment (Primary Health Care Performance Initiative 2022). Improving the delivery and quality of PHC relies on a multilevel systems approach, encompassing inputs at international, national, and local levels. From an international perspective, efforts to provide equity of access to quality care through more even distribution of wealth are regarded as vital to reduce or eliminate disadvantages related to social, economic, or environmental factors (Primary Health Care Performance Initiative 2022). Regardless of country, those with the least advantage must be afforded equal opportunity, health care, and services as those who are advantaged in terms of both tangible (financial) and intangible (knowledge) resources (Clendon and Munns 2018). This redistribution will enhance the health of communities through improved services, better education, and improved health literacy (Devaux 2015). Models for quality improvement at the service delivery level share several common features (Agency for Healthcare Research and Quality 2022). These include an emphasis on leadership to ensure that people are accountable for communicating the vision, strategy, and goals of the organization or service, and to eliminate cultural and other barriers. Internal monitoring and continuous measurement processes must be in place to ensure that standards are met and are improved through ongoing evidence-based interventions to enhance performance. This will rely on effective data gathering processes used to identify, measure, and analyze progress and issues and to guide decisions (Agency for Healthcare Research and Quality 2022). Improving clinical care at the service delivery level also vitally involves engagement with key stakeholders including users of care, and includes
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the free flow of information, and the capacity for the workforce and consumers to provide feedback on all aspects of PHC. While there have been gains in increasing the engagement of communities in health and well-being, many health systems continue to have a medical focus rather than supporting community empowerment, so the transparent use of feedback in guiding change is also important in improving consumers’ and providers’ experiences (World Health Organization 2020).
3.2.9 PHC-Oriented Research PHC research is essential in advancing the delivery of high-quality PHC services, with outcomes of research fostering the creation, management, dissemination, and use of knowledge. Given the multidisciplinary nature of PHC health services, PHC research must be undertaken by both multidisciplinary teams and teams from the range of health care disciplines that deliver PHC services. Key factors for successfully undertaking PHC research include access to sustainable funding, the development of partnerships, processes for dissemination of findings, and procedures to facilitate the translation of research findings into practice (Primary Health Care Performance Initiative 2022; World Health Organization 2020). Due to the complexity of the PHC sector, research teams need to bring together stakeholders from PHC as well as other sectors, which may influence health (Australian Institute of Health and Welfare 2022a; World Health Organization 2020). Stakeholders may also include funding bodies in the public, commercial or not-for-profit sectors, academic institutions and research centers, and at a government level may include officials with research, health, or science portfolios. Partnerships between external researchers and local PHC organizations particularly benefit from being able to engage directly with local communities and PHC providers to identify issues and problems requiring investigation. These partnerships are also beneficial in building capacity in local organizations to lead their own research in the future and to be more responsive to translating evidence into practice, enabling them to deliver improved PHC (Awoonor-Williams and Appiah-Denkyira 2017). Most importantly, partnerships enable cooperation in conducting research, and in the translation and dissemination of findings (World Health Organization 2020). The rapid transformation of options for dissemination has occurred in the last decade through new communication technologies, changes in publication requirements to include open access publications, and the availability of online forums and social media outlets such as Twitter, Facebook, and LinkedIn. 3.2.10 Monitoring and Evaluation The process of monitoring and evaluating the delivery of PHC is vital at a national level to ensure that governments have the necessary data to track progress toward achieving goals. This enables them to make informed decisions and have sufficient evidence to prioritize actions (Schafer et al. 2011) and allocate resources. Due to the diverse nature of PHC and the broad range of stakeholders, data sources need to be coordinated and integrated and be gathered within a framework of indicators linked to the goals and objectives of the PHC system in that country (Paulo Eduardo Guedes et al. 2020; World Health Organization 2020). The WHO acknowledges
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that while there are well-established indicators for use in some clinical settings, challenges still exist to reach agreement on indicators for other aspects of PHC, such as “empowered people and communities” (World Health Organization 2020) (p. 66). A range of qualitative and quantitative data, which reflects outcomes related to the indicators needs to be gathered through a coordinated and collaborative approach. Processes are also required to monitor and evaluate the data in real time where possible to ensure that actions can be taken promptly (World Health Organization 2020) and resources directed to those most in need. At a local level, monitoring and evaluation is often a part of the quality improvement process. Clinical indicators are required, which reflect local and national priorities, and data sets are established to record performance over time in meeting the indicators (Santos et al. 2022) and assist in local decision-making. Data collected as part of routine reporting systems including facility accreditation processes, finance and workforce data, management information systems, and consumer and community surveys are all sources that provide evidence of achievements of local and national goals (World Health Organization and United Nations Children’s Fund 2022). To demonstrate collaboration and transparency across the PHC sector, outcomes of local and national monitoring and evaluation processes should be shared in reports distributed across all sectors and made widely available to stakeholders, including individuals and communities.
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Conclusion and Future Directions
This chapter has discussed the development of PHC and the core components of strong PHC systems. PHC is constantly evolving due to rapid economic, environmental, technological, and demographic changes, all of which affect health and wellbeing. The discussion around the strategic and operational levers within this chapter highlights the complexity of developing PHC systems across the globe. The Astana Declaration on PHC has redefined and refocused PHC to achieve the goals of universal health coverage and the health-related SDGs. Together with its member states, the WHO has developed a roadmap for the role PHC will play in achieving universal health coverage, which includes a range of strategic and operational actions. At the core of these is broad engagement with industry and service delivery stakeholders, communities, and individuals. At a national level, political engagement is vital to ensure that resources are available to support the transition from disease focused health systems to person- and community-centered PHC. As individuals, each health professional needs to ensure that all people have access to the right kinds of health care to address their individual needs in a way that respects diversity and acknowledges disadvantage, thus achieving health for all. Forty years on from the Declaration of the Alma-Ata, the world has reaffirmed its commitment to improving the health and well-being of all people across the globe. While the SDGs represent an ambitious development agenda, it is timely for the world to take bold steps to seek and effect lasting change. As the world grapples with increasing climatic impacts and recovers from the global COVID-19 pandemic, the
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significance of universal health coverage has never been more apparent. The world has seen how people living with poverty, and those in marginalized and diverse groups, have been disproportionately affected. The strength of commitment to social justice, equity, and participation within PHC addresses the complex interplay of factors that contribute to these poorer health outcomes. However, achieving “Health for All” requires willingness, action, and ongoing commitment from governments and policy makers, health professionals, communities, and individuals.
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Health and Medical Humanities in Global Health: From the Anglocentric to the Anthropocene Claire Hooker, Brid Phillips, and Sandra Carr
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 What Are the Health and Medical Humanities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Troubling the Territory: Historical Connections Between the Health and Medical Humanities and Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 “First Wave”: An Anglocentric, Medical Paradigm . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 The Health Humanities and the Critical Medical Humanities . . . . . . . . . . . . . . . . . . . . . . . 3.3 The Health and Medical Humanities Beyond the Anglosphere . . . . . . . . . . . . . . . . . . . . . . 4 Acclimatization: Connecting the Health and (Critical) Medical Humanities to Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 How Might the Health and Medical Humanities Become Global? A World Universities Network Contribution . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Horizons: Toward the Future Global Health Humanities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Core Components of the Health Humanities for Global Health . . . . . . . . . . . . . . . . . . . . . 6.2 Decolonizing Health and Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter addresses three research questions. First, it asks, in what ways have the health and medical humanities been conceptually or practically connected C. Hooker (*) Sydney Health Ethics, University of Sydney, Sydney, NSW, Australia e-mail: [email protected] B. Phillips Centre for Arts, Mental Health and Wellbeing WA, University of Western Australia, Perth, WA, Australia e-mail: [email protected] S. Carr Health Professions Education, University of Western Australia, Perth, WA, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_14
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with global health? The chapter provides a schematic history of the health and medical humanities to identify that the medical humanities have been, and continues to be, very much a “Western” Anglo-European project, but one that has always contained critiques of dominant paradigms in medicine and health. It then asks, how might the health and medical humanities meaningfully shift to become a global area of research and practice? It describes a recent World Universities Network Health Humanities Initiative, which brought scholars together from across the world to take a first step toward this goal, and emphasizes the key importance of open dialogue to support this shift. Finally, it asks, in what areas might the health and medical humanities be of fundamental benefit to global health into the future? It discusses the health humanities in health professions education and future development and describes a framework to plan and evaluate health humanities teaching. The chapter concludes by discussing the key importance of the humanities in tackling the health challenges of the future. Keywords
Health humanities · Medical humanities · Decolonization · Coloniality · Interdisciplinary · Open dialogue · Critical pedagogy
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Introduction
In what ways have the health and medical humanities been conceptually or practically connected with global health? The brief answer is that until very recently they have not been. Very generally speaking, the “first wave” of the medical humanities (1965–2010) was an American-Anglo project instigated by criticisms of biomedical dominance, but contained within the normative structures and knowledges of orthodox (Western) medicine. Subsequently, the twenty-first century saw the rise of the health humanities and the “critical” medical humanities, both of which drew from humanities scholarship that analyzed class, gender, and other forms of power. Over the last 5 years, scholars have been drawn to similarly analyze racism and colonialism, and it is anticipated that this will remain a key focus for the health and medical humanities. This work has very recently afforded more connection between the health and medical humanities and global health, at a time when health humanities programs have been growing in Asia, Africa, and the Middle East, as well as in former British colonies. This chapter first briefly describes the history of the medical and health humanities, in order that readers not familiar with these fields gain a sense of their bodies of knowledge and their conceptual foci, and then explores new synthesis research and new possibilities in the field that indicate how crucial the humanities are to global health research and education.
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What Are the Health and Medical Humanities
The “medical humanities” refers to a broad area of teaching, scholarship, and practice, in which perspectives from the scholarly humanities (history, literary and cultural studies, philosophy, and so on), and the creative arts, are brought to bear on medical education and practice. The “health humanities” is similar but actively critiques and rejects medical hierarchies, centering broad definitions of health and the work and experiences of all people and their carers, rather than being centered on the experiences of “patients” and doctors. These fields overlap with, but are not the same as, “arts and health,” a recently burgeoning field of practice and research that grew in part from community cultural development, and that explores the many ways in which the creative arts intersect with and support health and well-being. In what follows, the chapter explains the development of these fields and how they relate to one another.
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Troubling the Territory: Historical Connections Between the Health and Medical Humanities and Global Health
3.1
“First Wave”: An Anglocentric, Medical Paradigm
Geographically speaking, the medical humanities was founded in, and found its power from, the “metropolitan centres” (MacLeod 1982) of American-Anglo medical education and academic scholarship. The medical humanities was and is one of countless endeavors that have, and continue to, reflected the persistent structures of Empire (Abimbola 2018). Previous histories commonly identify the beginnings of the medical humanities in the 1970s, chiefly in the USA (Stewart and Swain 2016) (though of course there are older traditions). The medical humanities arose from concerns about the erosion of humanism in medical practice in an increasingly technocratic era (Brody 2011), which was to be ameliorated by including humanities teaching in medical schools. One originary moment was Penn State College of Medicine establishment of a Department of Humanities in 1967; 5 years later, they appointed Joanne Trautmann, who was then the first professor of literature to hold a regular full-time faculty position in an American medical school. A veritable flowering of other programs then occurred across the USA and the UK over the ensuring three decades. The creation of two Wellcome Centres for the Medical Humanities (one at Durham University, and the other at King’s College, London) in the UK in 2009 marks the academic legitimation of this new field (Evans and Greaves 2010). During this first wave (roughly 1970–2010), the medical humanities was varied and heterogenous. A field more of practice than research, it predominantly reflected the concerns and culture of its physician founders and advocates. These concerns included critiques of medicine articulated by then new patient rights groups about medical power and epistemic dominance (Little 1995; Kerridge et al. 2003; Hurwitz 2013).
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First wave medical humanities was predominantly pedagogical (not research oriented). Epistemically, the focus was on better understanding patient experience (and to a lesser degree, engaging with physician experience). Instrumentally, the aim was to increase clinical skill and to improve relations with patients. For example, fine arts study and museum visits aimed to increase observation skills and simultaneously provide more insight into the qualities of illness experience. A prominent achievement of this period was the development of narrative medicine, led by literary physician Rita Charon (2016). Narrative methods recognized and valued the fact that patients present with stories, and showed that these stories matter in ways beyond the technical information extracted from them by doctors. By encouraging students to keep a “parallel chart” – narrative writing of their own, exploring all that is excluded by medical charting – Charon offered a means for students to be attentive to, and reflect on, their own experiences, as well as that of their patients’. The “first wave” also valued, encouraged, and explored physician empathy (Hooker 2015). By the early twenty-first century, research would demonstrate that patients who perceived their doctor as empathic were more likely to show a range of health benefits, from lowered cortisol levels to improved blood glucose metabolizing to improved self-efficacy and capacity to manage chronic conditions (Jeffrey 2019; Decety 2020; Nourallah et al. 2020). Physician scholars explored novels, poetry, music, and theater as ways for doctors to better develop empathy for their patients. Narrative medicine, the cultivation of empathy, and the use of arts and humanities, to improve physician-patient interactions, continue to have much to offer to contemporary global health (Stewart and Swain 2016; Kosik et al. 2018), and these themes persist as foci for health humanities curricula around the world. But much was missing from the “first wave” (Whitehead et al. 2016) – including any interest in contexts outside Anglophone nations. The first wave was narrow and primarily concerned with the doctor-patient dyad. Unsurprisingly, the doctor-centric paradigm of the First Wave was somewhat oblivious to the ways in which the humanities could be appropriated in medicine in ways that enabled doctors to display virtue without having to recognize or relinquish power, or even be discomfited (Garden 2009). This reflected the fact that first-wave medical humanities was remarkably little connected to actual humanities research. The first wave saw a turn away from medical history (in favor of the broader “medical humanities”) in medical schools at the same time as the philosophy of medicine was increasingly taught separately as, and confined to, “bioethics.” These shifts ironically tended to sever critically focused humanities research from medical humanities teaching programs (Dolan 2010; Warner 2011). The result was a glaring absence of scholarship that analyzed power structures (feminism, class-informed analyses, cultural studies, poststructuralism, and semiotic or even constructionist qualitative studies) in the medical humanities. “First wave” medical humanities was thus structured by a paradox: It both offered ways to critique medicine (Fox 1985) – and yet functioned to contain and neutralize critique (see Bleakley 2019, 2021). There was a constant tension between inherent value and instrumental outcomes, detrimental to academic standards. Early twentyfirst-century scholarship on empathy and narrative exemplified these tensions. The
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need to demonstrate instrumental outcomes (“the humanities improve medical students’ empathy”) led to attempts to measure empathy – but these attempts rested on a limited paradigm that was philosophically problematic, conceptually weak, and both oblivious to and discarding of other disciplinary perspectives because they troubled its instrumentalist goals (Hooker 2015; see also Roff 2015; Costa et al. 2017), and have since been questioned. This version of empathy enabled some research – but at the cost of a troubling ethics that diminished patient agency and evaded physician responsibility (Garden 2009). One of the biggest blind spots of first wave medical humanities was its overlooking the rich traditions of humanistic health care in nursing and allied health, including their emphasis on partnerships with their clients (troubling the notion of “patient”). The field was unintentionally exclusionary and perpetuated medical dominance and medical perspectives (Atkinson et al. 2015). The medical humanities were also taught without much engagement with population medicine or public health. These concerns prompted some to turn to a broader concept of the “health” humanities (Jones et al. 2017), and others to generate the “critical” medical humanities.
3.2
The Health Humanities and the Critical Medical Humanities
Explicitly motivated to counter the elitism of first wave medical humanities, UK scholar Paul Crawford began exploring a broader area under the term “health humanities” in 2006 (Crawford 2015; Crawford et al. 2015; Crawford and Paul 2019). Crawford (2015, p. 3) claims that the health humanities [moves] beyond . . . a privileging of a medical, biomedical, or scientific frame or lens above that of the expertise of the public, non-medical, or non-science contributions, and challenges mechanistic or reductive routes to “injecting” the arts and humanities as a kind of treatment. Importantly, it has fractured the expert to non-expert dynamic, revealing faultlines in the project of professional “injectables,” treatments, or interventions over grassroots self- and community help . . . It champions creative, non-professional, or nonexpert solutions to health and well-being challenges among service users, informal carers, and self-caring individuals or groups. It values co-design, co-creativity, and co-learning over privileged direction and control in maintaining or recovering the best possible lives while living with, or having experienced, poor health. (authors’ emphasis)
The initial emphasis was on collecting stories of caring, from the spectrum of carers – professionally trained or otherwise. From there, the health humanities has grown into a highly varied field with multiple intersections with health research. By 2011, the International Health Humanities Network was established; in 2015, the Health Humanities Consortium in the United States was launched. By 2016, there were 57 baccalaureate Health Humanities programs instituted in the United States alone. There have also been a number of field-defining publications (Jones et al. 2014; Crawford et al. 2015, 2020b; Crawford and Paul 2019; Klugman and Lamb 2019).
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A different strand of critique was launched in 2010, when the Beijing Forum’s featured theme of medical humanities catalyzed concerns about the absence of humanities scholarship from the medical humanities globally. The need for the “criticality” of humanities scholarship in the medical humanities was published in a 2011 issue of the BMJ journal Medical Humanities (Hooker and Noonan 2011; Macneill 2011; Warner 2011; Woods 2011). These critical conversations questioned why canonical forms of Western culture should provide a normal, or dominant, vehicle for medical humanities teaching (Hooker and Noonan 2011). This call was taken up at the two UK Wellcome Centres for the Medical Humanities (Whitehead et al. 2016). In setting out a new paradigm for the field, Whitehead, Woods, and others centered scholarship attention to power and power structures in society – suggesting that the field embrace the challenges of current critical and cultural theory, community-based arts, health countercultural creative practices, and the strategies of activist movements, to allow fulfillment of a critical medical humanities. They considered that the critical medical humanities would negotiate both the clinical interaction of the lived experience and the cultural, historical, and institutional settings which predicate issues of race, gender, disability, class, and socioeconomic status. Since then, the critical medical humanities have burgeoned. Multidisciplinary collaborative projects involving humanities scholars, health professionals, patients, and artists (Bolaki 2016; Fuller et al. 2021) are now hallmarks of the field. Such ways of working are wonderful models for research and practice in global health. This field now flourishes across Europe (McCaffrey 2021; Pegoraro et al. 2022) where scholars have particularly explored ideas and ethics related to “care” (Kristeva et al. 2018). The medical humanities have now become a field of scholarship wholly within the humanities themselves, often not engaged with health praxis or education. Medical history has again become prominent. The turn to the health humanities and the critical medical humanities allowed disruption of biomedical norms and ideas, and an embrace of the perspectives of marginalized groups, such as disability studies or queer studies. Lately, this has also enabled the inclusion of perspectives from geographical areas outside of Europe and the USA.
3.3
The Health and Medical Humanities Beyond the Anglosphere
A few medical schools in south-east Asian began to include humanities teaching in medical education programs in the first decade of the twenty-first century (Sun and Hu 2013; Tang 2017; Wu and Chen 2017; Kosik et al. 2018; Singh et al. 2020). For example, Peking University housed a Department of Medical Humanities, which conducted a significant program of research in medical history, literature, and film along with bioethics (e.g., Lo et al. 2019). Peking University hosted the influential 2010 Beijing Forum mentioned above. It is worth noting here that many of the
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medical humanities programs in Asia were first founded (and often led) by scholars and departments in medical history – this was true in Beijing, Hong Kong [https://chm.hku.hk/people.html], India, and the Middle East (Abdel-Halim and Alkattan 2012) and mirrored the way in which medical history had often provided the original structure through which the medical humanities were introduced to medical schools in English-speaking nations. By 2010, a small network of physician-scholars interested in the medical humanities existed across Southeast Asia – along with a strong desire to identify and connect with one another and support their endeavors of mutual interest. A newsletter to support the medical humanities in Asia was briefly established and represented physician-practitioners from Japan, Korea, Singapore, Taiwan, Malaysia, Indonesia, and New Zealand (one of the authors, CH, was present at the Beijing Forum and a contributor to and facilitator of the newsletter). From 2010, there has also been a slow growth in medical humanities programs and research in India, led most prominently by Dr. Satendra Singh in Delhi. In 2014, Singh and his colleagues founded an open access journal, Research and Humanities in Medical Education (RHiME) (Singh et al. 2017) – a journal that rapidly became so successful that it was forced to limit its format to creative works in 2023. In 2015, a month-long workshop on medical humanities was held in the Jorhat Medical College, Assam. It employed experiential learning (both online and onsite) using humanities tools, such as the theater of the oppressed, art, literature, reflective narratives, movies, the history of medicine, graphic medicine, poetry, and diversity studies (Gupta et al. 2011). The medical humanities in India has grown since these events and has been notable for its use of theater and drama-based approaches to teaching and learning, particularly Theatre of the Oppressed approaches that foreground health issues and experiences resulting from inequality (Singh et al. 2020). More recently, networks and conferences to connect scholars interested in the medical humanities have been established in Africa and the Middle East. The authors have not identified the health or medical humanities in South America, and speculated that this reflects the well-established traditions of medical humanism connected to left-wing political struggles and revolutionary movements in the region. Growth in the medical humanities in the Middle East has been limited, but two international conferences have been held, one in 2018 and the second in 2022. Organizers commented that “the diversity and increase in submissions from 2018 to 2022 testify to the growing importance of humanism in medicine in the region.” The University of Cape Town established a Master’s degree in the Medical Humanities in 2014 and offered a pioneering MOOC (Massive Open Online Course) in Medicine and the Arts from 2015. In 2018, the African Medical and Health Humanities network was created and continues to connect scholars, artists, and activists, and a special issue of the BMJ Medical Humanities journal on African medical humanities was published (Schillace 2018). In some ways, the medical humanities in these regions is replicating the same process of development as occurred in the first wave. Mostly physician led, the field
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seeks to counter biomedical dominance (albeit in contexts of more therapeutic pluralism); to advocate about the importance and power of medical empathy; to promote interest in patient experiences and perspectives; and to express, and salve, feelings of alienation from the dominant technocratic, biomedical (and bureaucratic) paradigm (Abdel-Halim and Alkattan 2012). As a result, current Health Humanities curricula and pedagogical approaches largely adopt a Euro-American framework (Hooker and Noonan 2011; Kosik et al. 2018; Carr et al. 2021; Naidu 2021) (although highly varied in some ways, including being utilized across diverse learning contexts). But increasingly, there is also local content, along with critiques of racism and coloniality (Eichbaum et al. 2019).
4
Acclimatization: Connecting the Health and (Critical) Medical Humanities to Global Health
The health and critical medical humanities have very recently experienced what might be termed a “post colonial turn” – awareness of race, and of the enduring impact of Empire. The powerful and urgent imperative of decolonization has become prominent, and there is an eager interest in “global health humanities” (Eichbaum et al. 2019; Hassan and Howell 2022). There is an acute awareness of the dominance of the global north in the field, and an eagerness to disrupt and dismantle this (Masuku et al. 2018; Naidu 2021). But this work is neither swift, nor is it easy (especially since being a “leader” in a new and virtuous field is advantageous for highly pressured global north academic careers). The dominant research groups in the global health humanities are all located in America, the UK, and Europe (which at the time of writing were the following: a Duke University global health humanities group; the Consortium of Universities for Global Health (CUGH)’s global health humanities working group; and two programs in global health humanities at UK Universities). The scholars in these research groups mostly hail from the global north – while reaching out to others. Grants are flowing from major funders in those countries to scholars within them; publications are “global north” in approach as well as majority authorship (Hassan and Howell 2022). In other words, as with the “acclimatization” societies of 150 years ago, the field is being cultivated on the terms set by global north scholarship (Abimbola 2019; Naidu 2021). All this is to say what a “global” health humanities might look like and requires a lot of dialogue. To expand an understanding about possibilities for internationalizing Health Humanities education, the authors embarked on an international collaboration, The Health Humanities initiative: Towards the development of the patientcentred and compassionate health professional through education, funded by the World Universities Network in 2020. The group came from Australia, Indonesia, China, South Africa, Ghana, the Netherlands, and Canada. While inclusive of several scholars from non-Anglo backgrounds, this group was still led by, and mostly represented, the global North. Here, the authors report some insights for how a global health humanities might develop.
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How Might the Health and Medical Humanities Become Global? A World Universities Network Contribution
The first key point to make is that principles and process were important, and the authors suggest that for the moment, a global, critical, decolonial health humanities can only emerge if investment and value is made in process as much as outcomes (though Universities have no means for valuing process). The group committed to openness, humility, and reciprocal generosity as guiding principles – and perhaps the practice of these was its most important feature. While meetings were designed to discuss our research process, the group often began by discussing local conditions and changing seasons, as well as impacts of the pandemic they were experiencing. Over time, they began to appreciate differences in their “taken for granted” understandings, which arose from experiences in different educational programs at different developmental stages, and in different cultural contexts. Engaging in dialogue and ongoing reflection was vital in helping them to navigate their unexamined assumptions, or “pre-knowing,” at this stage. The group found that intentionally framing their discussions in relation to place introduced a more generative exploration of similarities and differences characterizing their varying understandings and perspectives. The group considered that richer dialogue across positivist biomedical and health sciences, and constructivist humanities, arts, and social sciences, was required, and that the Health Humanities can play a critical role in the constant work of “translation” across disciplinary divides and contexts, leading to new transformative ideas and practices. The second point to make is that the global health humanities will advance through praxis: Having specific projects is key. The WUN group were brought together to conduct a scoping review of evaluations of health humanities curricula, and to use this to create an evaluation framework for health humanities education (Carr et al. 2021). This is because, despite the wealth of evidence that the arts and humanities are highly valued in healthcare education, the knowledge base about the impact of these interventions is currently scattered and ad hoc. Moniz’s recent large-scale overview of health humanities teaching found that just over half of the 769 publications included in their review were evaluated, and in less than a third, were students assessed. They concluded that the published literature regarding arts and humanities contributions to medical education are characterized by brief, episodic instalments and largely lacking a theoretical lens that may support accumulation of evidence into an “overarching theory of practice” (Moniz et al. 2021). This limits capacity for evaluation, comparison, or a common framework to encourage dialogue across different contexts. A review by the authors (Carr et al. 2021) focused on the research questions: A, “What is the focus of health humanities teaching?” and B, “What domains, and levels of learning are addressed?” as well as on how curricula have been evaluated. Their review included 24 qualitative and mixed-methods articles, whose content underscored that the extant diversity of Health Humanities limited comparability. The secondary analysis considered the impact of the learning experiences in relation to the Bloom’s domains of learning: knowledge (cognitive), skills (psychomotor), attitudes/behaviors (affective), and six levels of learning: remember, understand, apply, analyze, evaluate, and create.
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Applying this framework of domains and levels of learning through an iterative and reflexive coding process, the group identified six foci for health humanities teaching and learning: 1. Knowledge acquisition 2. Mastering skills (observation, listening, and reflection) 3. Interaction, perspective taking, and relational aims (person-centred communication, compassion, and empathy) 4. Professionalism, personal growth, and activism (transformation, values, and professionalism) 5. Personal wellness and self-care (stress management, mindfulness, and resilience building) and 6. Critical evaluation (evidence synthesis) These six foci arguably provide both a framework for curriculum development, evaluation, and comparison (Carr et al. 2022), and a useful, functional research agenda suited to maintaining connections between Global Health Humanities research conducted in humanities schools and departments, and Global Health Humanities teaching and training, conducted in healthcare professions education, and Schools of Health and Medicine. This will be clearly set out more below. The authors note that due to the heterogeneity of the articles captured in their scoping review, health humanities curriculum at present are not easily translatable to measurable knowledge, skills, or behaviorally based anchors. Indeed, the review showed very clearly that assessment of capabilities and capacities associated with humanities teaching and learning is not a straightforward matter (Carr et al. 2021). This led them back to discussions of their own perspectives and experiences across their different contexts, which helped them recognize and navigate tensions between dominant narratives and their own local practices. They anticipate that a similar reflexivity is unavoidable and of central importance to the Global Health Humanities as they develop. The authors suggest that this dialogical process underpins imagining expanded possibilities for a more internationally informed Health Humanities. In fact, it is a process that appears to be occurring in other centers for a global Health Humanities, and in some way mirrors the early, consciousness-raising processes of social movements and indeed of “first wave” medical humanities itself. Perhaps the answer to the question of “how” decolonization, or shifts toward internationalism, can occur is through adaptation and use of dialogical methods, such as Open Dialogue (Barimani et al. 2022) or codesign approaches. Such approaches align with Pattison’s (2003, p. 33) vision for medical humanities as encompassing a “loose coalition of concerns, people, disciplines, approaches, practices, and methods.” Over time, the authors jointly developed a growing desire to orient Health Humanities more directly to urgent local and global health issues, including social determinants of health, and climate change and sustainability. Pressing questions surrounding Health Humanities for future education, research, and practice include:
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• Who is “at the table” and what processes are in place to ensure their perspectives are taken into account? What new understandings and possibilities does this allow? • What can be learned from comparative research of Health Humanities curricular offerings in varying educational settings? • How can this be done across different learning settings? • What can be learned from collaborating across diverse settings, including where Health Humanities as a discipline is new? • How can we learn about processes and outcomes of different international Health Humanities networks and collaborations involving diverse contributors?
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Horizons: Toward the Future Global Health Humanities
So what can (or should) the Global Health Humanities do in the future? Why should the Health Humanities be an assumed central feature of Global Health? Out of a myriad of reasons, here the authors provide two answers. The first suggests that the health humanities, as directly concerned with healthcare practice and healthcare education, is composed of six core components. These were identified by the WUN collaboration. The second explores the possibilities for decolonizing the health humanities, and healthcare knowledge and praxis.
6.1
Core Components of the Health Humanities for Global Health
The “normal remit” of health humanities in healthcare professions education and professional development is likely to remain important at a global level and in fact to become a shared global teaching practice and a shared global discourse. In particular, the work of better understanding and valuing both patient and provider experience, of destigmatizing illness and disability, of cultivating empathy and dignity (among healthcare colleagues as well as between providers and the patients and communities they serve), of ethical action and decision-making, and of engaging with the social determinants of health (e.g., through social prescribing) is crucial and ongoing. The authors see these concerns in place in health humanities programs throughout Asia, in the Philippines, and in Africa and the Middle East. The WUN collaboration developed a framework for the health humanities consisting of six core components. While there is as yet not agreed upon “core curriculum” in the health humanities – and while it is of fundamental importance that any such curriculum be designed in terms of principles and priorities that are adaptable to local settings – in fact, there is increasing convergence about the importance of these components. They are: #1. Knowledge Acquisition. Important knowledge includes the history of health and medicine, including of local professions, systems, and practices. This knowledge is critical for understanding how patient presentions – how illness itself – expresses historical circumstances (e.g., Boulton et al. 2016). Knowledge of
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bioethical concepts and ways of reasoning – and of how these might be distinct and different, and informed by spiritual, cultural, or religious traditions in specific settings – are key in decision-making, particularly in contested circumstances. The philosophy of health and illness, including how these ideas vary culturally, are fundamental to experiences and approaches to health and healthcare. And there is an endless amount of knowledge of patient and provider experience to be gained from pathographies, carer narratives, and healthcare professions’ stories. #2. Mastering Skills. Humanities pedagogy improves skills in visual, tactile, and emotional observation; in active and accurate listening; and in reflexivity and reflective practice. These skills augment the Knowledge Acquisition, Personal Growth/ Professionalism, and Critical Evaluation components to engage with issues of structural violence, power imbalances, and unconscious bias. #3. Interaction, Perspective Taking, and the Relational. Humanities engagement develops the capacities and understandings necessary for person-centered communication, compassion, and empathy. These skills improve health work as well as relations with patients and carers. As studies of the impacts of courtesy in healthcare workplaces through to effective infection prevention and control repeatedly show, these capacities are important for ensuring collaborative, multidisciplinary (that is, multispecialist) care, and for ensuring the flow of constructive communication through healthcare teams and systems as possible. Good communication is also central to #4. Professionalism, personal growth, and activism. It is certainly the case that the creative arts are currently regarded as key to the deep, transformative, and embodied learning needed for both healthcare professionals – and carers, community members, and the unwell – to develop a clear sense of their values, and the capacity to act in a way constrained, grounded, and inspired by these values. This work supports #5. Personal Wellness and Self-Care. Traditionally, this has referred to the importance of stress management for health professionals, in view of the distressing poor mental health often experienced by clinicians (and other carers). The health humanities has long connected with recommendations for the practice of mindfulness as a component of self-care along with art-based forms of healing. In the future, this area should incorporate means to address the structural basis for poor mental health in clinicians, such as theories and practices for change in health systems and services. This business-as-usual model for the health humanities on a global scale is already ambitious, urgent, pragmatic, and powerful. But the business-as-usual model remains somewhat subject to the critiques that drove the emergence of the critical medical humanities and that are underpinning the flourishing of the health humanities in humanities research contexts, as well as the “Global Health Humanities” as currently funded in the global North. This points to the severely underdeveloped opportunities for research, practice, and curricula in the final core component: #6. Critical Evaluation. By “critical evaluation,” the authors suggest evidence synthesis as a starting point. They advocate that meta-analytic reviews be considered normal practice for a range of topics in health and health care and, by definition, include humanities research traditions. And they mean “critical” in the sense of “critical studies” – with a competent grasp of power structures and systems,
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of structural violence and discrimination, and of the neoliberal and neoconservative politics that underpin heath concepts as well as the design of healthcare.
6.2
Decolonizing Health and Medicine
Many, if not most, people would agree that business as usual in health – even in highincome settings – leaves much to be desired. Since Covid-19, health care workers around the world report high levels of stress in their work, often connected to both understaffing and under-resourced health services, preventing delivery of standard of care. Moral injury is common, and grievous. And ill health is widespread – caused by the conditions in which people work, live, and play. Wealth is only one form of the disparities that produce ill health. Early life experiences strongly determine both physical health and a host of cascading effects, from educational attainment to emotional resilience. People who are Indigenous, queer (i.e., LGBTQIA+), or disabled; who are body- or neurodiverse; who are racialized or immigrant; who are experiencing addiction or mental illness; or who live remotely – all experience worse health than those who are from cultural majority, heterosexual, urban, and have a living wage. As inequality grows in high-income country settings, social determinants continue to be the primary drivers of mortality and morbidity, not least because of barriers to accessing health services and because of the lack of social and cultural safety within them. This basic background can only be partially ameliorated by attention to lived experience and the cultivation of empathy – and although there has been substantial attention paid to matters of structural disadvantage, race, gender, and income inequality, the health humanities have been the poorer for concentrating on individual and interpersonal knowledge and interaction, more than on the structural challenges in health and medicine themselves. It is worth noting the two primary determinants of health noted by Marmot and Wilkinson in their seminal text The Social Determinants of Health (1999): Rather than income or socioeconomic status (as is commonly discussed as “the social gradient”), Marmot identified having control over one’s life and one’s degree of social inclusion and connection as the primary determinants of health. Health systems can be deeply disempowering – not only because of their organizational constraints, but also at the level of knowledge itself. This fueled antipsychiatry, patients’ rights, and women’s health movements in the late twentieth century and now fuels mad, crip, queer, and disability studies. All of these forms of ill-health are often considered as arising from the same foundational causes: living in a state of “coloniality” (Quijano 2021), the enduring legacy of colonialism (e.g., Sherwood 2013). One possible and compelling paradigm for global health humanities is to begin with a framework that recognizes colonialism, and ongoing coloniality, to be entangled with the economic and political norms of neoliberalism and extractive capitalism (De Leeuw et al. 2018, 2021; Brand et al. 2023). As a result, coloniality is intersectionally interconnected with the ongoing sexism, racism, ableism, agism, placeism, and so forth that have been shown repeatedly to produce ill-health. To intervene in the causes of causes, then, the health humanities are not only important,
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but fundamental. This work has begun, instigated and led by Indigenous, Black and Global Health scholars (Crawford et al. 2020a; Watego et al. 2021). The health humanities enables practitioners, scholars, and members of the public to understand how Western, scientific biomedical knowledge and practices are constructed (rather than “discovered”), to question dualistic paradigms that treat physical and mental health (or individual and collective health) as separate phenomena, to make the supposedly objective and neutral scientific knower visible as a Western construct that was produced through racist and colonialist structures, and to make the partial, located, and embodied self, or collective, a more powerful and rigorous source of knowledge. Articles in the 2022 special issue of the BMJ Medical Humanities consider the biopolitical links between global health and colonial histories through critical readings of literary texts and film, deconstruct key terms and ideas to unpick the history and politics of health experiences, and explore the injuries that result from clashes between new technologies and persisting cultural traditions. Such work emphasizes the crucial role that cultural and artistic practices and narrative and story can play in health and healing. An Indigenist health humanities, for example, might explore questions such as how art and story can be medicine, in (some) Indigenous cultural traditions (Crawford et al. 2020a). Alternatively, it might explore how art and story can be knowledge and critique. Indigenist health humanities are or can be uncompromising. Rooted in a deep rejection of injustice, the Inala Manifesto, for example, “foregrounds Indigenous intellectual sovereignty, recognising the centrality of an Indigenous criticality to Indigenous health advancement which is defined by Indigenous peoples, making visible the strength, capability, and humanity of Indigenous peoples in all processes and products” and considers “disciplinary disloyalty a form of academic excellence. . .the sociologist, the anthropologist, the political scientist, the legal scholar, and the philosopher are as integral to the health research team as the clinically trained health researcher and epidemiologist” (Watego et al. 2021, p. 4/10). The Inala Manifesto imagines an Indigenist health humanities as one that would set out the contribution of Indigenous knowledges to contemporary health discipline scopes of practice, center Indigenous philosophy of health as life (and as connection to country, culture, and community), and build a transformative epidemiology that makes the human experience of Indigenous peoples – culturally, politically, intellectually, and ethically – central to all stages of research. This work would develop an Indigenous critical race theory, which will imagine “Indigeneity not as a variation to being human but as foundational, and, in doing so, . . . illuminate understandings of what it is to be uniquely and fully human in relation to the natural and ancestral world” (Watego et al. 2021, p. 7/10).
7
Conclusion and Future Directions
Health in the future looks likely to be determined by the intersections of climate change and growing and deeply structured inequality. The authors suggest that the health humanities are not a nice-to-have afforded to affluent nations, but critical to global health as it grapples with these basic axes of suffering. In addressing future
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health challenges – such as pandemic social preparedness; vaccine hesitancy; the mitigation of stigma and social exclusion; emergency management from preparation to long-term resilience; surviving the distress of clinical careers; and providing care that is trauma and social (in)justice informed – humanities perspectives are, and will continue to be, critical. It turns out that injustice hurts and, long-term, injures; that both nature and cultural creative activities are critical to well-being; that health and meaning-making are inseparable; and that humans collectively long for a future other than that offered by the systems of late global capitalism. The humanities constantly bring these facts into visibility, from health promotion to clinical care, and offer a hopeful path for global health into the uncertain future.
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Cross-References
▶ Critical Public Health ▶ Critical Theory ▶ Cultural-Historical Activity Theory [CHAT] and Health in Faith Communities ▶ Decolonial Methodology in Social Scientific Studies of Global Public Health ▶ Digital Storytelling ▶ Feminist Methodology ▶ Photovoice ▶ Religion and Health ▶ Social Justice and Global Public Health ▶ Walking Interviewing Method Acknowledgments The authors gratefully acknowledge the contribution to this chapter by all members of the WUN Health Humanities initiative: Prof Pamela Brett-Maclean; Dr. Anna Harris; Prof Steve Reid; Dr. Mary Ani-Ampousah; Dr. Daniel Vuillermin; A/Prof Karen Scott; Dr. Farah Noya; and Dr. Nahal Mavaddat.
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Traditional Medicine and Global Public Health Kevin Dew and Supuni Liyanagunawardena
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Traditional Medicine and Everyday Practices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Global Flows of Traditional Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Transformations and Reshapings of Traditional Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Traditional Medicine and Biomedicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Resorting to Traditional Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Traditional Medicines Against COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Traditional medicine plays an important role in therapeutic systems across the globe. Not only do they get taken up in people’s everyday healthcare practices, alongside biomedical practices and folk medicine, but traditional medicines also carry symbolic importance in relation to national and other forms of identity, have an important role in the economies of many countries, and in some instances are a central component in healthcare delivery. Traditional medicine practices have evolved over centuries and continue to be reshaped in relation to commercial demands, technological developments, and interactions with biomedicine, and in turn influence and reshape biomedicine. Traditional medicine is transformed and is transforming as it is taken up in countries beyond its place of origin, and further affordances in access to traditional medicines and training in traditional medicine arises in a connected and digitized world. In circumstances where biomedicine K. Dew (*) Te Herenga Waka – Victoria University of Wellington, Wellington, New Zealand e-mail: [email protected] S. Liyanagunawardena University of Sri Jayewardenepura, Nugegoda, Sri Lanka e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_16
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has had limited success, such as in the face of uncertainty caused by on-going chronic conditions at an individual level, or responses to new diseases, such as COVID-19, at a population level, traditional medicines have been turned to. Traditional medicine practices are not static but are dynamic and fluid and responsive to a changing world. Keywords
Traditional medicine · Complementary medicine · Alternative medicine · Medical pluralism · Ayurveda · Siddha · Medicoscapes
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Introduction
Traditional medicine, however it is conceptualized, has had, and continues to have, an important role in the therapeutic practices of many people around the globe. The topic of traditional medicine and the role it plays in global health is a vast one, so the authors are by necessity selective in the discussion of this topic. The aim of this chapter is to provide some insights into the diverse aspects of traditional medicine, its use in everyday life in many places, its flow across the globe, its transformations, and how it relates to other therapeutic approaches, in particular biomedicine. The authors also consider the ways in which traditional medicine has been taken up, or not, as one possible response to the major health issue of our times, the COVID pandemic. The crucial role of traditional medicine in the delivery of healthcare has been highlighted by international health organizations for decades. The Alma Ata declaration of 1978, an outcome of the International Conference on Primary Health Care, noted the role of traditional practitioners in the delivery of primary care (International Conference on Primary Health Care 2015). The World Health Organization has developed policies related to traditional medicine, including a Traditional Medicine Strategy 2014–2023, which aimed to facilitate the development of regulations on traditional medicine and complementary and alternative medicine (CAM) and the integration of them into national health systems (Pokladnikova and Telec 2020). Traditional medicine in its various guises is taught in many universities throughout the world. For example, in Africa, practices that were passed on orally down the generations can now also be taught through training programs, and universities in South Africa, Tanzania, and other countries include traditional medicine in the training of medical students and pharmacy students (World Health Organization 2013). In many countries, there is a high reliance on the use of traditional medicine practitioners, illustrated by the situation in Africa where the ratio of doctors to the population is 1:40,000, and the ratio of traditional healers is 1:500 (World Health Organization 2013). Accessibility to biomedical practitioners is then severely limited whereas traditional healers are much more accessible.
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What then is traditional medicine? There are many different therapeutic practices and approaches that come under this umbrella term. It refers to therapeutic systems that have had a long history of development, such as traditional Chinese medicine (TCM) and Ayurveda, and also to indigenous healing practices that may also have a long history but are passed down from generation to generation rather than being systematically documented (Choi 2008). In some parts of the world, traditional medicine is recognized and resourced at a national level, as seen in the establishment in 1995 of a Ministry of AYUSH in India. AYUSH stands for Ayurveda, yoga, unani, siddha, and homeopathy, with sowa rigpa added in 2010. In other parts of the world, these same therapeutic practices are more likely to be referred to as complementary or alternative medicine, mainly delivered by practitioners who are not working within the public healthcare system. Traditional medicine, alternative medicine, and complementary medicine are usually situated as a contrast to biomedicine. Biomedicine refers to what has become over the twentieth and twenty-first centuries the dominant state-sanctioned therapeutic approach throughout the world, which is delivered under the auspices of the organized medical profession. In addition to these approaches, another term, folk medicine, is used to describe the everyday practices, or localized practices that are not likely to be systematized or overseen by professional groupings. It should also be noted that there is considerable overlap between such folk practices and what is generally accepted as traditional therapeutics in a given local community. The term medical pluralism has been used to describe the situation where a range of therapeutic practices are available to a population, such as traditional medicine, biomedicine, and folk medicine (Leslie 1976). Therapeutic pluralism is a similar term, but signaling that the term “medical” may be simply reinforcing the dominance of biomedicine (Dew 2021). The delivery of medicine is one therapeutic practice among many, as for example, some people may use devotional practices in a therapeutic way. The great diversity of therapeutic practices is made sense of by people in their everyday lives, an issue to which the chapter now turns.
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Traditional Medicine and Everyday Practices
Although being recognized and regulated via state mechanisms, or being left outside of state regulation, has important implications for the visibility, credibility, and uptake of therapeutic practices, a great deal of therapeutic practice is beyond the oversight of the state or of the medical profession, or other health practitioners. This is because on a daily basis, therapeutic practices are undertaken inside homes, schools, workplaces, and other spaces outside of clinics, consulting rooms, and hospitals. The home in particular is a major space of clinical intervention, where householders bring in therapeutic practices and understandings from outside the home, and reshape them to fit with their own understandings, routines, and relationships (Dew et al. 2014). In the home, traditional medicine will be taken up and used alongside biomedicine and folk medicine practices. Decisions around how this is done relates to a
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range of factors, including economic ones. For example, in India, a decision may be made to seek the help of a deity as attending a shrine is cheaper than the cost of travel to medical centers, paying for consultations, and obtaining medical prescriptions (Lambert 1997). On the other hand, for some, there may be social prestige attached to attending medical practitioners in that it aligns with modernity (Lambert 1997). This choice can play out in gendered ways with women and girl children less likely to be given access to biomedical care (Lambert 1997) and so being more reliant on traditional practices obtainable in the home. In the home, traditional medical practices can overlap with food practices. The use of everyday items for medicinal purposes, such as turmeric and cumin, is something that people may be brought up with, so that they are practicing traditional medical approaches before they are aware of therapeutic distinctions (Broom et al. 2009). In South Asia, for example, the preparation of food involves the addition of numerous spices, condiments, and plant extracts. Their use in cooking is most often prompted by the flavor that they add to the food, yet many of these have also been identified as possessing medicinal value. These same items are also used in preparing simple yet potent medicines for everyday ill-health conditions. A classic example would be the coriander infusion, which many Sri Lankans would swear by as the most effective cure for the common cold. This is prepared by boiling coriander seeds in water, with or without ginger, and a bit of sugar added later for taste. As observed in rural Sri Lanka, it is customary for households to cultivate some useful herbal plants in the back yard, so as to have a fresh supply available at hand (Liyanagunawardena 2022). The kitchen, where the spices and condiments are located and where the food and medicine preparation also take place, usually has direct access to the back yard. This works as a strategic emplacement aimed at convenience. Some homes may also boast of large herbal gardens maintained solely for medicinal requirements, be it one’s own or others’: for the owners would generously help out anyone who is in need of herbal ingredients for some medicinal preparation. This also sheds some light on the communal aspect of traditional medicine as it appears in rural communities. While some tonics and medicines can be bought ready-for-use at shops or at a practitioner’s, most often what is received by the patient in the Sri Lankan context is a recipe. It is up to the patient (and their loved ones) to seek the necessary items and to prepare the medicine/s as per the given recipe. This requires going in search of various plants and herbal ingredients, which is quite an arduous task nowadays, given that much of the natural vegetation and forest cover have been cleared. Once the ingredients are ready, the medicine preparation too may take much time, effort, and skill. In cases of severe illness, it is also very common for the neighbors to organize a religious ceremony such as bodhi puja (Buddhist veneration of the Bo tree) to seek blessings for a quick recovery. All in all, traditional medical treatment may call for participation and assistance of numerous others apart from the sick person themselves and their household, so much so that it becomes a communal event (Liyanagunawardena 2022). In the context of the urbanized Global North, traditional medicines may be used very differently with purchases of packaged herbal preparation and therapeutic
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formulae more likely. The therapeutic approach would more likely be referred to as complementary or alternative medicine, which would likely be taken alongside biomedical prescriptions or taken up in the event of biomedicine failing to successfully treat the condition of concern.
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Global Flows of Traditional Medicine
Forms of traditional medicine have circulated around the globe along with exchanges of goods, services, and people across the globe. Korean hanbang medicine is available in Australia and elsewhere where Korean migration has occurred (Han 2000). Ayurvedic medicine from India can be found in most major Western cities, and traditional Chinese medicine, especially the use of acupuncture, is used worldwide (World Health Organization 2013). Traditional medicine could be used in geopolitical ways. For example, in the 1950s, the term traditional Chinese medicine was first coined in the People’s Republic of China. This was an intentional naming of the therapeutic approach for foreign language publications and in an effort to promote it globally (Leung 2008). Ayurvedic pharmaceuticals have been promoted by the Indian government as a way of fostering alliances (Meier Zu Biesen 2018). More recent examples can be drawn from the global and regional sharing of traditional medicines and therapeutic knowhow in responding to the COVID-19 pandemic, as discussed later in the chapter. Where traditional medicines are being prepared for a foreign market, the form (s) these products and services take would often be specifically shaped to appeal to the intended audience, and therefore, may differ considerably from their original form(s). For example, it has been argued that promoters of Ayurveda in the West, such as Deepak Chopra and Maharishi Mahesh Yogi, market their approach in terms of wellness and self-help, with renderings that align with Western notions of the new age and a fascination with oriental mysticism (Warrier 2011). Similar adaptations of traditional medicines may happen even in their native locales in the interests of tourism. As such, very often tourists are being offered specifically shaped therapeutic encounters with traditional medicine that may align more with their Western sensibilities than with the demands of the therapeutic practice. For example, in Kolkata, a Vedic Village is a tourist attraction for both foreign and domestic travelers. Wealthy patrons stay in the Village to relax and rejuvenate, with massage and yoga available. But such selected services eschew other aspects of a Vedic approach, such as the seasonality of practices (Islam 2012). When traditional medical practices are taught in Western universities, they may more explicitly conform to Western models of knowledge production. Academic staff teaching traditional Chinese medicine in Australian universities utilize laboratory research and randomized clinical trials in efforts to develop an evidence base that conforms to the current dominance of evidence-based medicine in Western medical culture (Brosnan 2016). The desire to conform to Western ideals of knowledge production did not necessarily play out in the lecture halls and classrooms though, where academic staff used concepts foreign to Western medicine, such as qi
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(Brosnan 2016). How traditional Chinese medicine is presented is then contingent upon several factors, including who the audience is. Globalization has also fostered the South-South movement of traditional medicines. An example of this is the development of markets for ayurvedic products and practices in East Africa (Meier Zu Biesen 2018). Meier zu Biesen uses the term medicoscapes to describe the shaping of Indian traditional therapeutic practices in Kenya and other East African countries. The term medicoscapes has been defined as [g]lobally dispersed landscapes of individuals; national, transnational, and international organizations and institutions as well as heterogeneous practices, artifacts, and things, which are connected to different policies, power relations and regimes of medical knowledge, treatments, and healing. While concentrated in certain localities, medicoscapes connect locations, persons, and institutions via multiple and partially contradicting aims, practices, and policies (Hörbst and Wolf 2014, p. 184).
The uptake of ayurvedic medicine occurs within a medicoscape of entrepreneurship, nationalist expansionism, drug regulation policies, the movement of peoples across continents, and the affordances of digital technologies among others. The following provides some detail of Meier zu Biesen’s findings to give a flavor of the way in which traditional medicine can be situated within complex assemblages of policies, practices, and peoples crossing the globe. Ayurvedic pharmaceutical companies, such as The Himalaya Drug Company and Charak Pharmaka are major players in the flow of Indian traditional therapeutics through the manufacture and distribution of ayurvedic medicine, particularly in the form of pills for mass production and consumption. The Himalaya Drug Company exports over 200 formulations to 90 countries. These companies target medical professionals with Indian roots and connections, and are provided with biomedically framed publications about the drug company products (Meier Zu Biesen 2018). In the Kenyan situation, Ayurveda can appeal to a diaspora of 200,000 as well as others attracted to this different therapeutic approach, particularly the more well-heeled who could be attracted to a therapeutic approach that is promoted to attain a “wholesome lifestyle, vitality, wellness, and pleasure” (Meier Zu Biesen 2018, p. 346). Neoliberal economic policies support the export of drugs and the promotion of trade relationships, and the World Health Organization provides guidelines on the safety monitoring of traditional medicines. National drug regulation agencies develop their own approval mechanisms for these traditional medicines. In the context of East Africa, the costs of obtaining approval for these herbal-based ayurvedic products from India and the length of time to get through the process puts the market out of reach for smaller manufacturers – with the larger companies being able to fund and work through the process to get onto the local markets. However, the worldwide web provides opportunities for health professionals and for others to access different products. The Internet also enables the training of ayurvedic health professionals online, with the Indian Board of Alternative Medicine offering a 2-year online program. Flows of people between India and Kenya allow
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movement of preparations in passenger luggage. Larger shipments may go through ports where bribes may be demanded so that the formal regulatory system can be avoided. This example provides insight into the complex assemblages in which discourses, policy environments, migratory and tourist flows, institutions, actors, and agents are entangled in traditional medicine practices. It also suggests how traditional medicine may be transformed, such as new forms of medical education delivery and an emphasis on mass produced therapeutics. But the reshaping of traditional medicine is not new and is ongoing.
4
Transformations and Reshapings of Traditional Medicine
The example of the Vedic village and of Ayurveda in East Africa signals some ways in which traditional medicine can evolve. As a matter of fact, all therapeutic systems, including biomedicine and Chinese medicine, are constantly developing and changing, while the ways in which people take up and deploy these therapeutic systems are also dynamic and fluid (Scheid 2002). Therapeutic modalities may incorporate aspects of other modalities, as when biomedicine takes on aspects of traditional Chinese medicine like acupuncture, and in doing so remold both the practice of acupuncture and the practices of biomedicine. In the same way, as has been seen with the commercialization of ayurvedic medicines, traditional medicines may incorporate the techniques and concepts of biomedicine. Such cross-dissemination is not a recent phenomenon, with different traditions in India, such as the classic Sanskrit ayurvedic medicine and the Islamic medical approach of unani influencing each other as far back as the eleventh century (Warrier 2011). But having said that, there are aspects of therapeutic systems that appear foundational and are sustained over time, such as the three humours concept found in ayurvedic medicine. In some parts of the world, there are non-biomedical therapeutic approaches that have state legitimacy, such as in India where, depending on where one is living, a person seeking therapeutic help may be able to choose from Gandhian nature cure, Ayurveda, homeopathy and others besides biomedicine. Different therapeutic practices are more or less available to the populace depending on the time period this chapter is referring to and the resources that are required in seeking out help. In precolonial times in India, Ayurveda, unani, and siddha approaches were only really available to the elite (Attewell et al. 2012). The general population would instead have available a variety of folk and localized practices. Changes in the availability of and the shape of traditional therapeutic practices could be driven by economic developments, and also technological and infrastructural changes. For example, in the 1950s, the Indian state supported traditional medicine dispensaries as they used cheaper equipment than conventional Western dispensaries and used locally sourced ingredients (Berger 2013). The development of commercial printing in India brought about a different shift as it made information about Ayurveda available to a much wider audience. The authors of new publications,
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such as practitioners (vaids), obtained a medical authority that had previously been the reserve of Brahman pandits, who, through their training and understanding of Sanskrit, had access to Vedic knowledge and understanding that were not previously widely available (Berger 2013). These new developments in commercial printing and shifts in authority allowed Ayurveda to gain legitimacy as an Indian science and so play a part in the reconstruction of Indian identity (Berger 2013). And it has been argued that an effect of colonization was to further bring about a coalescing of therapeutic practices so that Ayurveda became a “quintessentially Indian medicine” (Langford 2002, p. 7). Traditional medicines in India already had concepts compatible with biomedicine, allowing for some assimilation of ideas. Forms of surgery had been described in ayurvedic texts, but with Brahmanical influence had dropped out of the therapeutic toolkit of Ayurveda (Lambert 2012). In Ayurveda, germs could play a role in disease causation; however, the “seed” of the germ was given less prominence in ayurvedic approaches than the “soil” of the body (Bivins 2007). Over time some practices would recede in prominence in traditional medicine, for example, urine analysis is no longer used as a diagnostic tool in unani and ayurvedic practices to the extent that it once was (Hardiman and Mukharji 2012). As noted, a traditional therapeutic approach like Ayurveda can be entwined in nationalist considerations, but this does little to prevent these practices becoming commoditized and biomedicalized (Warrier 2011). The biomedicalization of Ayurveda occurs in many ways, including texts being rewritten to better conform to biomedicine, and organizational structures in education and service delivery changed to emulate biomedicine (Warrier 2011). The goals of nationalism and establishing the distinctiveness of an Indian medicine has given state legitimacy to Ayurveda and other therapeutic approaches, but these approaches are still not given the same status as biomedicine (Warrier 2011). Traditional medical practices can also become highly commercialized beyond the commercialization involving pharmaceutical industries. The development of telegurus in India is illustrative. Tele-gurus, like Baba Ramdev, have been labeled as yogapreneurs (Misra 2017). Baba Ramdev is an advocate of traditional medicine. He advocates the use of local medicines and has set up a business network that includes food manufacturing that promotes itself as providing healthier alternatives to such products as toothpaste, noodles, and ketchup than those produced and sold by multinational companies. Through this process, the Indian economy is strengthened and its population are made healthier (Khalikova 2017). His followers are reportedly in the millions across many countries, facilitated by popular television broadcasts. Siddha is another traditional Indian medical practice, based in Tamil Nadu, which is being transformed in various ways. Traditionally, its education was based on an apprenticeship type model or a hereditary form of training with students learning from a practitioner, whereas today formal training can be achieved through the attainment of a Bachelor of Siddha Medicine and Surgery (Weiss 2009). Siddha practitioners are in a competitive marketplace of traditional medicine in India and a point of distinction has been the role of alchemy in Siddha practices, with the
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transformation of metals a centerpiece of the practice. Although a point of distinction, this form of alchemy is an expensive process, and so this fosters more attention being paid to herbal remedies, again made from local ingredients. Local ingredients in this instance may not be used so much to support the local economy, but are based in the idea that the cures for disease can be found in the locations in which those diseases occur (Weiss 2009). The concept that the medicines for diseases are to be found where the disease occurs was common to other Indian traditional therapeutic practices. Underlying this understanding is a view that people have different constitutions as an outcome of where they live, the climate, and what herbs and plants grow in that locale. This concept of specific constitutions requiring particular approaches has also been applied in a religious context, whereby the religious constitution of a Muslim requires Unani therapeutics and the constitution of a Hindu requires ayurvedic therapeutics (Berger 2013). However, as seen with the commercialization and global trading of ayurvedic medicines, such conceptual understandings can have limited purchase. Another transformation in Siddha therapeutics is around how therapeutic knowledge is accessed. Siddha therapeutics had been based on palm leaf manuscripts passed down through the generations. These manuscripts were attributed to a Siddhar. Siddhars were medical yogis who had obtained supernatural powers. These palm leaf manuscripts were central to the guru–student relationship, and the knowledge was not available to those who were outside of that particular relationship and that line of manuscript transmission (Weiss 2009). In contemporary times, most of these manuscripts that survive have been placed in archives and libraries, and so are accessible in ways that they were not in the past. The Siddha therapeutic tradition has been modernized through the establishment of degree courses and the centralized housing of relevant texts, but the hereditary lineages also persist, so resisting the overall standardization of this traditional therapeutic system. (Weiss 2009). There are then ongoing reshapings of traditional medicine, but also of biomedical practices. There are dynamic interactions between patient, practitioner, and competing health systems. To illustrate, in India, with the introduction of biomedicine, patients came to expect the use of injections and antibiotics, and so non-biomedical healers can incorporate these into their practices, and conversely biomedical practitioners respond to patient expectations in prescribing elaborate dietary practices that accompany medical prescriptions (Trawick 1992). Much of these practices that merge across therapeutic boundaries, as mentioned above, arise due to the needs and expectations of treatment seekers. Traditional practitioners, whose profession is already threatened by the greater popularity of biomedicine, may aim to cater to the patients’ demands as a way of retaining their client base. In rural Sri Lanka, for example, there are traditional practitioners who are known for providing their patients the choice of herbal recipes or biomedical pharmaceuticals as treatment (Liyanagunawardena 2022).
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Traditional Medicine and Biomedicine
The chapter has noted some ways in which biomedicine and traditional medicine relate, but Western medicine prior to what might be described as the scientific revolution had many similarities with some of the major traditional medicine systems found in the Indian subcontinent and China. In these traditions, the body is conceived as a “largely fluid entity in dynamic equilibrium. . .endowed with vital energy” (Bivins 2007, p. 26). Major differences emerge in the seventeenth and eighteenth centuries as Western medicine becomes grounded in anatomy. In countries with strong indigenous therapeutic systems that have been at some stage subjugated by Western powers, biomedicine or Western medicine can be linked to forces of colonialism. In Sri Lanka, biomedicine is colloquially referred to as “English medicine,” signaling its colonial legacy. Today, centuries after its introduction to the country, biomedicine continues to be somewhat foreign and unfamiliar even among people who actively seek biomedical treatment, and pharmaceuticals are often viewed as risky objects to be handled with fear and great care in (rural) households (Liyanagunawardena 2022). In contrast, the local variant of Ayurvedainspired traditional medicine is called “Sinhala medicine,” as reminiscent of the national culture and historical past. Promotion of traditional medicine has been a rallying point for various nationalist political groups in the country, further establishing Sinhala medicine as a potent national symbol (Arseculeratne 2002). This way, the use of traditional therapeutics can take on an explicitly political dimension. With state recognition of traditional medicine in India, educational institutions have been established to foster those approaches. However, there is a tension between the way in which traditional medicine is taught and the demands of clinical and hospital settings where graduate students may end up. In training hospitals, ayurvedic students may be taught ayurvedic theory in the classroom, but when they enter the wards biomedical disease categories and prescribing practices dominate (Langford 2002). As noted, the reshaping of traditional medicine toward biomedical understandings can be seen in efforts to commercialize ayurvedic remedies. Efforts in research on ayurvedic remedies can focus on isolating the active components of the traditional remedies, so that standard formulas can be used in the production and consumption of remedies. But for traditional ayurvedic clinicians, the whole remedy is needed as the various ingredients are seen as being required to regulate the “active” ingredient (Langford 2002). Further than this, the “holistic” approach in prescribing means that people with the same condition diagnosed in medical terms may be given different ayurvedic remedies. This is because the remedy is selected for the patient as a whole, not for the specific set of symptoms that they might have. This approach conflicts with efforts derived from a biomedical model to treat particular conditions with a standardized particular remedy (Langford 2002).
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Resorting to Traditional Medicine
As discussed thus far, in nearly every context of therapeutic pluralism, traditional medicines tend to lag behind biomedicine in terms of state sponsorship, availability of resources, and research efforts aimed at broadening and updating the existing knowledge base. Yet, traditional medicines continue to be trusted by people and are resorted to as a popular treatment alternative alongside biomedicine. It should be noted that navigating between biomedical and traditional treatment alternatives is not done in a haphazard manner. As Liyanage (2000) points out, in Sri Lanka, treatment seeking trajectories are shaped along a well-established hierarchy of choices, based on local beliefs of the comparative efficacy of treatment modalities in relation to a given condition. Accordingly, while biomedicine remains overwhelmingly more popular than traditional medicines in the country, various (forms of) traditional medicines continue to be in demand. Where fractures and sprains are concerned, for example, traditional kadum bidum (orthopedic) treatment is highly sought after. Another case is that of Pinas roga, characterized by symptoms of “catarrh, sinus, tonsillitis, hay fever, and asthma” (Obeyesekere 1976, p. 216). While this condition is conceptualized from a traditional ayurvedic framework, local biomedical practitioners also offer symptomatic treatment. Yet, many Sri Lankans continue to prefer (ayurvedic) traditional medical treatment for pinas (Liyanage 2000; Weerasinghe and Fernando 2011; Wolffers 1988). In addition, certain illness conditions may be looked upon as requiring traditional medical interventions as nothing else would “work” on them. These are most often conditions that are understood from a traditional medical point of view and can hardly be mapped onto biomedical classifications. To illustrate, lait thied sohpet, a popular illness idiom among the Khasi in India, loosely translates to “the navel affecting the nerves, which occurs specifically when a person lifts something heavier than their body weight” (Albert et al. 2019, p. 165). Another example is that of thanikan dosa among the Sinhalese in Sri Lanka. Literally translatable as “misfortune of aloneness” (Obeyesekere 1969), this is caused by the malevolent gaze (disti) of a supernatural being such as a demon, and is associated with variable symptoms of weight loss, lethargy, mood changes, and/or psychological distress. Since such conditions defy biomedical theories of disease etiology, it is perhaps logical that their cure is also situated in the traditional medical framework wherein they have been conceptualized. Traditional medicines are also positioned as a potent alternative to biomedicine, especially where the latter is perceived as failing. This can be observed with regard to conditions for which biomedicine offers no permanent cure. For instance, the biomedical treatment for diabetes often involves life-long pharmacotherapy, and, therefore, is more of a management technique than a cure. In the case of conditions such as cancer, biomedical interventions that are available – such as chemotherapy and surgery – produce much anxiety in the patients. Such concerns and dissatisfaction with biomedical therapies would understandably propel treatment seekers toward alternative treatments including traditional medicines.
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Where cancer care is concerned, for example, there is a very high demand around the world for non-biomedical therapeutics. Apart from being considered a potential alternative – even a last resort – where mainstream biomedical treatment has failed, traditional medicines may also inspire much trust: 95% of participants in a Sri Lanka-based study (n ¼ 500) voiced the expectation of being cured from cancer through using traditional, complementary, and alternative therapies (Broom et al. 2010). Further, the holistic nature and spiritual dimensions associated with many traditional medicines are often appreciated, as reported in studies into users of bush medicine among Aboriginal people in Australia (Shahid et al. 2010), Dam darood in Pakistan (Tovey et al. 2005), and prayer-for-health in Malaysia (Chui et al. 2014). On the other hand, the gulf between biomedical and non-biomedical treatment in cancer care remains very often unmitigated. Physicians may actively dissuade people from seeking traditional medicines (Broom et al. 2010), and many patients would not disclose their simultaneous use of traditional medicines to their biomedical care provider. From a biomedical perspective, accessing other therapeutics would be risky as it may delay the biomedical diagnosis, thus affecting the chances of better prognosis on biomedical terms (Hisham and Yip 2004). The lack of scientific evidence for the efficacy of traditional medicines is a major complaint as well. In response to this, there is a growing body of scientific research into various traditional medicines used in cancer care. For example, herbal extracts such as ginseng and honokiol, widely used in TCM, have been proposed as effective in treating various types of cancers (Banik et al. 2019; Wong et al. 2015).
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Traditional Medicines Against COVID-19
The most recent case of traditional medicines being accessed as alternatives to biomedicine is that of the COVID-19 pandemic. Similar to other conditions discussed above, there has been a high uptake of traditional medicines (as well as complementary and alternative medicines) around the world as a measure against the coronavirus infection. In India, the Ayush Sanjivani mobile app was promoted as a means of keeping track of people’s engagements with traditional medical practices during the pandemic. A study based on self-reported user data generated from the app shows that 85.2% of the app users (n ¼ 723,459) from all round the country have tried traditional medical practices, and that 89.8% of them found these measures beneficial (Srikanth et al. 2021). In Iran, a cross-sectional study (n ¼ 782) indicated that 84% of the participants had used some form of CAM (Dehghan et al. 2022). Globally, people have resorted to various traditional medicines in their search for preventive and curative therapies for COVID-19. Foremost in the list are ones that were already well known as potent cures in the local communities. These include jamu in Indonesia (a traditional medicine used for pain relief and to treat chronic illness such as cancer) (Lim and Pranata 2020), cow dung and urine among Hindus in India (Daria and Islam 2021), aqueous decoctions of medicinal plant materials in African countries (Orisakwe et al. 2020), and herbal medicine and prayer in Iran (Dehghan et al. 2022).
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The popularity of traditional medicines against the coronavirus also led to a mushrooming of “miracle cures” deriving from traditional knowledges and/or medicinal ingredients. There has been a massive demand for such products within the pandemic’s atmosphere of panic and confusion. A case in point is that of “Covid Organics” from Madagascar, developed in the Malagasy Institute of Applied Research. It contains extracts of artemisia, a plant well known in the traditional medicine repertoire and already being used to produce the antimalarial drug artemisinin. Endorsed by the Malagasy president himself, it was distributed widely both in the country as well as throughout Africa and beyond (Shaban 2020). Another example is the “dammika paniya” in Sri Lanka, an allegedly traditional medicinal syrup, produced by a traditional practitioner who shot to sudden fame due to this invention. Many government officials, social elites, and religious leaders acknowledged the product at the time and even consumed it, as widely publicized in the mass media. Thousands of people thronged to purchase the miracle drug, even ignoring the public health guidelines that were enforced at the time. However, the media hype and the public demand for “dammika paniya” was quite short-lived, and soon eclipsed by rumors of the drug’s inefficacy and mounting criticism against fraudulent practitioner-entrepreneurs (Silva 2020; Senaratne 2021). “Covid Organics” was officially endorsed by the Malagasy president; and similarly, various national governments have taken steps to advance their locally popular traditional medicines as effective therapies against the viral disease. In China, where TCM is institutionalized and used in conjunction with biomedicine in the healthcare system, TCM was introduced as a part of the standard treatment for COVID-19 and has been deemed successful (Ren et al. 2020; Xu and Zhang 2020). The Chinese government has also sent TCM products and experts to assist in the treatment of COVID-19 patients in several countries such as Italy and Iraq (Dai et al. 2021). In India, too, there has been much interest in exploring the potential of traditional medicines in relation to COVID. For example, ayurvedic medicine has been proposed for prophylaxis and prevention, while yoga and meditation may be beneficial in terms of improving the psychological and spiritual well-being (Patwardhan and Sarwal 2021; Rastogi et al. 2020; Tillu et al. 2020). Certain medicines in the ayurvedic repertoire are also reported as containing strong antiviral properties (Maurya et al. 2022; Sarkar and Das Mukhopadhyay 2021). The Indian Ministry of AYUSH – established to regulate and develop traditional medicines – has played an important role in this regard. Under its purview, detailed guidelines have been issued on how traditional medicines can be adapted to treat patients, from those who have mild or no symptoms to those whose condition is rapidly deteriorating (Pandit and Singh 2020). It is noteworthy that traditional therapies were being officially endorsed as treatment against COVID even in countries where they are not as yet integrated into the mainstream healthcare provision, such as in Sri Lanka. Since the first wave of COVID-19 in early 2020, the government of Sri Lanka – through its Ministry of Health – promoted a number of traditional medicine-inspired methods as means of countering the viral infection and building immunity in the body. Health officials appearing on mass media instructed the public to regularly use steam inhalation, a
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popular traditional method to clear nasal and sinus congestion, as a means of avoiding the coronavirus infection. It was also reported that certain medicinal porridges and herbal infusions were provided to patients at the state-run COVID treatment centers and hospitals (Silva 2020). However, a frequent criticism that has dogged the launching of various traditional medicines as therapies against the coronavirus is the lack of scientific evidence for their efficacy. Most of the traditional medicines that have become popular remedies against the pandemic were certainly touted as miracle cures, yet it is rarely that they have been supported by proof acceptable to the biomedical/scientific community. While traditional Chinese medicine was widely endorsed by China, scientists have cast doubt upon its alleged benefits against the COVID infection as being unfounded (Gray and Belessis 2020; Muhammad 2020; Cyranoski 2020). The World Health Organization has announced similar concerns regarding Madagascar’s Covid Organics, which has led to the proposal of scientific guidelines for the testing of any African herbal remedies in future. In response to such demands, randomized controlled trials and other investigations were being undertaken on some ayurvedic drugs in India to establish their potential as treatment for COVID (Maurya et al. 2022; Sarkar and Das Mukhopadhyay 2021). What becomes clear through these scientifically oriented dictates over traditional medicines is the continued dominance of biomedicine, which calls for their conformity to a scientific/biomedical model as the means of gaining legitimacy and acceptance in the contemporary global therapeutic landscape. Whether it is through conformity to or rejection of the knowledge claims of Western science and trends of biomedicalization, traditional medicines would continue changing and transforming and reinventing themselves, their popularity a constant ebb and flow.
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Conclusion and Future Direction
Traditional medicine can be positioned for strategic purposes in different ways including as symbolic of national identity, as complementary to biomedicine, and as representing complete healing systems based on eternal truths (Langford 2002). Traditional medicine is not static, and responds to biomedicine, as biomedicine responds to traditional therapeutics. In rural communities of the Global South, traditional medicine may involve communal effort and exchange and focus on local resources. With globalization, traditional medicine is entwined with export policies, commercial imperatives of remedy manufacturers, drug regulation practices, international organization guidelines, flows of people, and the affordances of digital technologies. With global trends in aging populations, increasing rates of noncommunicable and chronic disease, and the experiences of pandemics of new diseases, traditional medicines are likely to take on an even more important role in population health. The impact of COVID-19 in stretching conventional health systems to capacity and beyond can only foster efforts to consider the utility of other forms of healthcare delivery, such as the use of traditional medicines and its practitioners. Ongoing
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migrations will expose a wider range of people to different therapeutic possibilities, an exposure further enhanced with the accessibility of ideas, information, and educational possibilities provided by the Internet. This will bring into focus a host of issues for nation-states and international health-focused agencies, such as how to build up an evidence base for traditional medicines, how to regulate practitioner training, how to oversee the manufacture and distribution of traditional remedies, and how to harmonize approaches across borders. Traditional medicines, given their malleability and deep-rootedness in communities, have weathered many challenges through the ages from colonialism to biomedical dominance. Looking ahead, it is very likely that thy will continue to have an important place in people’s therapeutic practices throughout the world. As the world changes, so would traditional medicines and their associated practices.
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Embedding Social Medicine in the Health Professions Curriculum Zarrin Seema Siddiqui and Nguyen Le My Anh
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Models of the Curriculum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Institutional-Led Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Student-Led Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Community-Led Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Evaluation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Institutional/Organizational Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Educator’s Level . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Social medicine is considered as an important part of the curriculum in health professions education. It is defined as the systematic study that underpins the connections between society, disease, and medicine. Health professions curricula are actively incorporating the content related to social medicine in response to the accreditation requirements. This has led to a growing need among educators in clinical and preclinical phase for awareness, training, and support to translate the defined content into teaching activities. This chapter presents a review of the published literature examining how social medicine is taught in the health professions curriculum with details about the content covered, teaching strategies with assessment tools, and evaluation of the outcomes. These studies reported curricular interventions at undergraduate and postgraduate levels with a variety of teaching and assessment strategies. Most of the interventions have reported Kirkpatrick’s first level of evaluation and learner’s views of learning experiences. Z. S. Siddiqui (*) · N. L. M. Anh MD Education Unit, College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_17
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A smaller number of articles incorporated changes in learner behavior and only four studies reported benefits to the delivery of health care. An overview of these interventions and recommendations for educators based on the review to incorporate a social medicine framework is discussed in this chapter. Keywords
Social medicine · Medical education · Undergraduate · Postgraduate · Curriculum · Innovation · Global health
1
Introduction
Social medicine is a relatively new term with an increase in the published literature during last two decades. It is defined as a systematic study of the relationship between society, disease, and medicine. However, the history suggests that the term social medicine was first coined in 1848 (Sand 1953). Rudolf Virchow, a physician, wrote in 1948 that “medicine is a social science and politics is nothing else but medicine on a larger scale.” Thomas McKeown was one of the leading physician-demographer who developed the study of social determinants of health. (Kasper et al. 2016). Social medicine was discussed at the First World Conference on medical education in 1953 where a section was devoted to preventive and social medicine. The earliest reference to social medicine is found in an article published in 1953 (Mudaliar 1953). He differentiated between public health and social medicine and noted that public health focuses on causes, distribution, and prevention of communicable diseases. On the other hand, the author opined that social medicine is more about the health issues which have correlations with social and occupational conditions which can be prevented. He further emphasized that medical students should know about the pathology of families, groups, societies, or larger populations along with pathology of the diseased condition. In 1960, Robertson proposed that public health and preventive health subjects may be replaced with the term social medicine as the word “social” is more inclusive of what the stakeholders are trying to achieve in terms of prevention (Robertson 1960). He proposed that social medicine is a combination of four subjects, i.e., epidemiology, health administration and practice, environmental control, and the social aspects of diseases. Later, in 1970, Lowe further elaborated on the use of term social medicine for community medicine. He proposed epidemiology and services as two components of social medicine (Lowe 1970). Yet, social medicine as a discipline appears in the health professions education literature more toward last two decades (see Fig. 1). The literature suggests that there is a positive influence on patient care outcomes and that social medicine should be embedded in the curriculum. In the USA, the Liaison Committee on Medical Education (LCME), American College of Physicians, and the Society for General Internal Medicine have mandated the inclusion of social determinants of health (SDH) education in undergraduate curriculum. A panel comprising experts recently suggested that 29% of
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Number of Articles
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1950 - 1960 1961 - 1970 1971 - 1980 1981 - 1990
1991 - 2000 2001 - 2010
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Time period Fig. 1 Number of articles published from 1950–2020
undergraduate curriculum must include SDH (Mangold et al. 2019). However, there are no guidelines to support educators in terms of teaching strategies, time allocation in clinical and preclinical phases, and the curricular structure. Therefore, it is difficult for stakeholders to have a clear understanding of how they can transform the content which provides students with a meaningful learning experience. In this chapter, the authors present a review of the literature related to social medicine in the curriculum to provide an account of the best practices in the field of health professions.
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Models of the Curriculum
There are several ways in which curricular models can be classified, for example, undergraduate versus postgraduate, mandatory versus electives, and standalone versus longitudinal models. The authors have classified the models of the curriculum depending on who was responsible to lead that initiative, thus concluding with three models. Almost all models irrespective of who led include advocacy as the common theme and are based on biopsychosocial framework implemented in a collaborative approach. • Institutional-led models • Student-led models • Community-led models
2.1
Institutional-Led Models
2.1.1
Interventions at Postgraduate Level
Advocacy Model The American Academy of Pediatrics proposed a three-tier advocacy model to strengthen the capacity of pediatricians. This model can easily be applied to all
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other specialties and outlines the levels of advocacy. The first level is as an individual when a clinician screens the patient for social determinants of health during the encounter. The second intervention is at the community level where the clinician can work with community organizations to address social needs, while the third level is to raise the physician’s voice at legislative level. Lax et al. (2019) implemented this model as a set of six workshops supplemented by panel discussions, lobby days, and application of the concepts in clinical encounters supported by faculty preceptors. Underserved Medicine and Public Health Program A two-year longitudinal curriculum was introduced within the Internal Medicine Residency Program to nurture students’ interest in caring for underserved population (Catalanotti et al. 2021). The program has three components including placement at a community clinic with a preceptor, evening seminars with guided reflection, and a community project. The authors reported building relationship with local community health centers and community-practicing physicians as the ingredient for success in caring for underserved population. Engel’s Biopsychosocial Model Based on the Engel’s framework residents were introduced to the philosophy, theoretical framework, and practice of social medicine. The program is structured around three themes: community, patient care, and the physician-as-person (Strelnick et al. 2008). This is the first study where physician as a person is included in the framework and moving beyond the traditional definition of society, medicine, and illness. This is an acknowledgment that physician is a member of the society and is affected by the social factors. Healing Through History (HTH) Bradley et al. (2021) reported another collaborative model which is used to train internal medicine residents. The approach used was based on social and narrative medicine consultation comprising three phases. The salient feature of this model was participatory approach where patient also had a voice in the intervention. In the first phase, first-year residents participated in two sessions to identify and interview a patient. After identifying the patient, residents approach the patient and describe the project to receive the consent for interview. The consultation is then written as patient’s story and shared with faculty for to edit together and reflect on the experience. The final narrative is shared with patient to suggest any modifications/ deletion, and once patient approves and provides consent, it becomes part of the electronic health record with date of interview. Trigger-Based Model in Ambulatory Setting Residents actively look for triggers in the patient’s presentation to identify social needs. Support was provided through resources that could assist residents in the advocating on patient’s behalf (Hassan et al. 2018).
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Psychosocial Curriculum A twenty-week psychosocial curriculum was designed with practicum for residents in family medicine (Peck et al. 2022). The purpose of the curriculum is to equip the residents with family skills and observe through practicum.
2.1.2
Interventions at Undergraduate Level
Longitudinal Social Medicine Curriculum The curriculum is integrated through preclinical and clinical phases (Goyal et al. 2021). Supplemented by courses already offered with content related to social medicine, Theme of the Week was introduced in the preclinical phase. The theme corelates the social medicine outcomes within the content offered during that week. Additionally, extracurricular events are arranged to reinforce the concepts with active involvement of the students. During the clinical phase, social determinants of health rounds are introduced in the obstetrics/gynecology and psychiatry rotations while work is in progress in other specialties. No evaluation is reported in the article. However, there is another article published in the same year which described the student and faculty evaluation of the preclinical curriculum using self-reported survey with open- and closed-ended statements (Finnie et al. 2021). Research Electives Elective-based experiences in under-resourced countries allow students to observe the social determinants of health in a global perspective. Following the visit, research-based experience allows students to translate research findings to underserved communities in the home country (Shalan et al. 2021). Integrated Humanities-Social Sciences Course Another integrated humanities-social sciences course with research activities was introduced in Korea for dental students. Nine topics were covered over a period of 13 weeks. The content was derived after a critical review of seven international organizations (Lee et al. 2020). Value-Based Health Care Curriculum This model is another example of integrated curriculum in an undergraduate medical course which includes health policy, ethics, and epidemiology with social medicine. The salient feature of this model is the involvement of the business faculty to teach medical students using a case-based approach (Holtzman et al. 2020). Introduction to Social Medicine and Global Health This course is part of first-year medical course at the Harvard Medical School. The goal of the course is to facilitate social medicine concepts within clinical settings using a variety of strategies (Kasper et al. 2016).
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Theater-Based Curriculum A series of two workshops were designed for medical students in later years of the medical course. A collaborative approach was used where stakeholders from the Theater of the Oppressed and members of an association to fight against sexism in the hospital environment interact with different specialties, sociology and gender studies designed the content of the workshops. The focus of the workshops was prevention of sexism and sexual harassment using theater of the oppressed approach. Students discuss and identify individual, collective, and institutional resources to confront sexism and sexual harassment. It is anticipated that this awareness will enable them toward a cultural shift where they are not victims or bystanders (Lüthi et al. 2022).
2.2
Student-Led Models
Most of the interventions led by students are standalone courses or electives. The authors also observed a social network developed as web portal with students interested in social medicine.
2.2.1 Curriculum Development Student advocates at one medical school critically reviewed the curriculum of two separate three-week blocks offered to first-year medical students (Afolabi et al. 2021). The review identified three strategies to facilitate conversations about race. First strategy was to include teaching experts in sociology, critical race theory, and gender studies with community members who can share their experiences. Second strategy was to place inequities in the context of structural violence and the third strategy was to provide more challenging reading material with discussion questions relevant in preclinical phase. This review resulted in the formation of a Structural Competency Working Group. The membership of this group was extended to students, clinicians, scholars, public health experts, and community members with a task to implement curriculum that encourages students to think how disease is influenced by social context and what is the effect of structural forces on the social context. The curriculum comprises case study approach where students were encouraged to think beyond the traditional medical history. This curriculum was supplemented by other extracurricular experiences for peers as well as another elective was designed by the students to develop advocacy and leadership skills. Another intervention on same lines was the introduction to Human Rights and Social Justice Program at another medical school in the USA (Bakshi et al. 2015). Led by a group of four students in collaboration with faculty, this program was offered during the preclinical phase as an extracurricular activity. The program has five components which include didactic components with career seminars, mentoring, and research plus an advocacy project.
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2.2.2 Social Medicine Network Social Medicine Network is a student-led initiative which started from one university in Canada and then implemented at other universities (Boroumand et al. 2020). As a non-mandatory elective, students maintain a web-based portal which lists clinical, service, and research-related opportunities to address the social determinants of health. The portal can be accessed by other health professions, thus stimulating an interprofessional learning experience. As this is not a mandatory course and bears no credit value, only students who are passionate about social medicine select the areas of their interest (Boroumand et al. 2020). 2.2.3 CANMED Model This student-led elective was planned during covid pandemic where third-year medical students delivered donated food to families on weekly basis (Daccache et al. 2020). These families were already known by the Community Social Pediatrics Hub at the University. During each visit, students learn about the pediatrics and domestic concerns which formed the part of discussion with the director. Subsequently, the visits were supplemented with relevant readings in social medicine, virtual guest speakers, group presentations, and teleconferences.
2.3
Community-Led Models
2.3.1 Social Justice Through Critical Reflections A collaborative model was introduced by SocMed, a not-for-profit organization for social justice through the University of Minnesota, USA, and a hospital in Uganda. Between a period of 2010 and 2020, 217 students from health sciences courses and community workers in two countries were trained using a variety of approaches to develop skills and knowledge (Voller et al. 2022). The salient feature of this model was to encourage critical reflection in action, so students reflect on their own experiences with power, privilege, race, class, gender, and sexual orientation through facilitated conversations with peers and core faculty. 2.3.2 Community Partnership Model A multiprong approach led by a remote tribal community organization in collaboration with Massachusetts General Hospital and Harvard Medical school led to positive outcomes in terms of staffing and provision of health care in a remote area (Trout et al. 2021). 2.3.3 Nature of the Activities (Teaching and Assessment) A list of content covered in the curricula is listed in Table 1. By no means this is a comprehensive list but may only be used for guidance.
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2.3.4 Teaching Strategies A variety of teaching strategies are reported in the studies (see Table 2). The most common were case-based discussions, community placements, and grand rounds with presentations focusing on social determinants of health. Use of arts and storytelling is a new teaching strategy that is reported in two studies published in 2022. 2.3.5 Assessment Tools Project-based assignments with research reports were more commonly used alongside reflective exercises. Peck et al. (2022) reported direct observation using a structured form where residents were assessed during clinical encounters (Table 3). Table 1 List of topics covered in the curriculum Content areas Health policy Advocacy skills Critical thinking skills Communication skills Entrepreneurship Understanding of illness Social determinants of health Research skills Self-care and resilience Medico-legal partnership
Physician bias Social justice and human rights Racial mistreatment Cross-cultural collaborations Cost measurement and insurance Models of integrated care Management and leadership Epidemiology Ethics Harm reduction
Table 2 Teaching strategies No 1. 2. 3. 4.
Strategies Selected readings Didactic sessions Guest speakers (virtual/in person, panel discussions Grand round/presentations
5.
Community placements and clinics with preceptors
6.
Case-based discussions/ workshops Observed family meetings Patient interviews and writeups Arts including theater and storytelling
7. 8. 9.
Reference Daccache et al. (2020), Peck et al. (2022) Bakshi et al. (2015) Daccache et al. (2020), Lax et al. (2019) Catalanotti et al. (2021), Daccache et al. (2020), Goyal et al. (2021) Bakshi et al. (2015), Boroumand et al. (2020), Catalanotti et al. (2022), Daccache et al. (2020), Peck et al. (2022) Afolabi et al. (2021), Goyal et al. (2021), Howell et al. (2019), Holtzman et al. (2020), Manca et al. (2020) Peck et al. (2022) Bradley et al. (2021), Boroumand et al. (2020) Lüthi et al. (2022), Voller et al. (2022)
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Table 3 Assessment tools No 1. 2.
Tools Research Reflective exercise
3.
Project work and presentations Written exam Direct observations
4. 5.
2.4
Reference Lee et al. (2020), Bakshi et al. (2015) Catalanotti et al. (2022), Goyal et al. (2021), Strelnick et al. (2008) Lee et al. (2020), Bakshi et al. (2015), Strelnick et al. (2008) Goyal et al. (2021), Lee et al. (2020) Peck et al. (2022)
Evaluation
The outcomes of interventions were assessed using the Kirkpatrick training evaluation level (Johnson et al. 2020). Although a fifth level is added to the framework by Johnson et al., which explores the impact through system-based outcomes because of intervention, it was outside the scope of this review so was not included. The four levels are: • Reaction: the degree to which learners find the program favorable, engaging, and relevant to their career. • Learning: the degree to which learners acquire the knowledge, skills, attitudes, confidence, and commitment they were intended to acquire based on their participation. • Behavior or application: the degree to which learners apply what they have learned from the intervention to their careers. • Results: the degree to which targeted outcomes occur because of the intervention.
2.4.1 Level One: Reaction The impact of the initiative is positively assessed by self-reported measurement (Boroumand et al. 2020). Daccache et al. (2020) reported higher scores for all of the learning objectives in the self-reported survey for medical students who participated in the initiative compared to the control group. Of the nine objectives, six resulted in statistically significant results. Similarly, Voller et al. (2022) observed higher scores among participants using pre and post tests in the topics covered in courses in both the USA and Uganda. Bradley et al. (2021) used focus groups to assess the learning outcomes and were able to identify three major themes. These were the ability to connect with the patients and gain insight about the context and social determinants of health, development of clinical skills, and identification of structural barriers to the practice of social medicine. Other studies observed increased student satisfaction (Lüthi et al. 2022; Finnie et al. 2021; Lax et al. 2019; Catalanotti et al. 2021; Kasper et al. 2016). 2.4.2 Level Two: Learning Integrating research/clinical experience as part of global health elective in a low-income country resulted in students understanding research and develop
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communication skills. The interventions proposed at one institution in the USA also observed changes in the understanding of the social issues (Howell et al. 2019). Lee et al. (2020) observed a significant growth in attitudes and skills. There was also a positive correlation recorded in knowledge growth of students with their perceived achievement of learning outcomes (Bakshi et al. 2015). In the three-tiered advocacy model, the residents reported improved frequency in asking about the SDH, specially income, education, and legal issues (Lax et al. 2019). Several other studies observed improved knowledge among participants (Holtzman et al. 2020; Lüthi et al. 2022; Voller et al. 2022).
2.4.3 Level Three: Behavior HTH curriculum changed the way residents interact with the patient and identify development of clinical skills around complex communication (Bradley et al. 2021; Howick et al. 2022). Some other unintended positive changes were observed through this intervention. The residents started encouraging the medical students in their supervision to follow the same consultation model. In turn, medical students adapted a geriatric narrative telemedicine elective based on the HTH model. Currently, the research team is also designing a similar telemedicine elective for residents in internal medicine. In the family skills curriculum, residents were observed using a structured form. In most of the encounters, residents were more likely to score in the competent or proficient domains (Bakshi et al. 2015; Peck et al. 2022; Trout et al. 2021). 2.4.4 Level Four: Results Strelnick et al. (2008) has tracked 562 graduates of Residency Program in Social Medicine over the course of 37 years. The authors have observed positive outcomes in terms of the future location of practice and leadership positions. Trigger-based intervention identified a decline in referrals to social workers as compared to the control group because of increased confidence and practice behavior related to social determinants of health (Hassan et al. 2018). A multiprong approach adapted through community-academic model resulted in positive outcomes at various levels in a remote under-resource setting. These include increased hours dedicated to patient care in a variety of settings, expansion of village field clinics as well as retention of fellows in the service. Exposure to underserved patients within internal medicine training leads to an interest among residents as shown in a survey conducted after five years of the program. Yet, there are two points to consider. The response rate was only 59%. The residents in the program opted to participate in the program so they may already have an interest in serving the vulnerable population (Catalanotti et al. 2021).
3
Recommendations
Based on this review, the authors propose several recommendations for stakeholders. These recommendations are organized at two levels, i.e., institutional/organizational level whose role is to provide resources and the educator’s level whose responsibility is to embed social medicine within a curriculum.
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Institutional/Organizational Level
3.1.1
Include Social Medicine as an Accreditation/Licensing Requirement Organizations responsible for accreditation and recognition of qualifications should mandate inclusion of social medicine in the curricula. Since LCME has mandated the inclusion of social medicine, many interventions are reported from the USA. A directive from accreditation organization will ensure that the institutions commit in terms of funding for resources (physical and human) for sustained results. 3.1.2 Engage Stakeholders Community involvement should not be offered in a single, short period but it should be longitudinal. One institution started with a two-week community curriculum to develop partnerships with local community health centers so as to identify the major areas of interest. This provides incentive to stakeholders who contribute to the implementation of the program. If financial resources are not available, voluntary faculty appointments with access to institutional resources like library access may be helpful (Goyal et al. 2021; Afolabi et al. 2021; Changiz and Alizadeh 2021; Shobha 2022). 3.1.3
Establish Networks Through Active Collaboration Among All Stakeholders Health systems vary significantly between and within countries. Clinical interventions, access to treatment, or preventive care also differ considerably. One-size-fitsall approach cannot be recommended when it comes to the curriculum organization, funding models, and provision of resources. National and regional networks will be useful in developing a more contextual approach. These networks can identify the core clinical activities using a patient-centered approach. Each member of the network can then align resources and define the code of conduct to implement those activities. Local, regional, and national groups can collaborate to identify what works best within one’s own context. Seventeen studies in this review are from the USA, Canada, and Switzerland and only one from Korea. Studies from developing countries are scarce. LCME has mandated incorporating social medicine in the curriculum, which may be the reason for a high number of interventions in the USA. Developed countries have access to resources and may be able to establish partnership models with developing countries to support projects aiming at social medicine. It is observed that international research electives provide greater insights to medical students about health inequities. Dedicated fellowships to encourage students can be funded through partnerships between organizations and institutions. Developed countries can also allocate some resources to bring students from low-income countries to observe the health systems and approaches that can be modified and/or adapted to local needs.
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Educator’s Level
3.2.1 Define Taxonomy Building a taxonomy is important for all stakeholders to understand the nature and components of social medicine. The authors observed varying terms like community medicine, public health, preventive health, community health, social determinants, and global health. It is important to understand how these terms differ from each other and are linked or integrated within social medicine. 3.2.2 Scan the Existing Curriculum This explores the current representation of the social medicine content in the curriculum. A study conducted in Germany analyzed three key documents which include the learning outcomes, content framework of national licensing exam, and full set of questions used in a year. It was observed that between 3% and 27% of the analyzed documents referred to social determinants of health only 0–3% of those documents made explicit reference to SDH (Hommes et al. 2020). This type of scoping exercise will be useful in identifying where interventions are required in the action plan. 3.2.3 Redesign the Curricula In this review, standalone initiatives are observed which are not mandatory for students. The ideal approach is to develop longitudinal curriculum incorporating social medicine (Bradley et al. 2021). Integration is the fundamental requirement for the future workforce to consider SDH when providing care, therefore, design integrated learning experiences. For example, starvation can be discussed within a case covering biochemistry where lipid metabolism is discussed (Manca et al. 2020). Use of instructional methods such as problem-based, team-based learning, field study, and projects in community will provide authentic experience (Changiz and Alizadeh 2021). Educators need to be innovative when linking theory with clinical experiences, thus highlighting the need for an integrated longitudinal curriculum. Immersive experiences in the form of research and clinical placements will familiarize students with the skills to navigate and assess patient in a holistic way rather than focusing on sign and symptoms. It should also be noted that many of the students entering the health professions belong to marginalized communities and come from various backgrounds. This enables them to share the knowledge and learn within the constructive framework if we provide a safe learning space encouraging students to ask questions and propose solutions. This uses real cases and involve students in creating these cases. The clinicians and educators can work together to integrate social medicine within the existing cases rather than building a new repository of cases. Clinical education components must include social history taking skills and entrustable professional activities. 3.2.4 Extend Social Medicine at All Levels Studies at undergraduate level can integrate social medicine within the curriculum and majority of the studies (n ¼ 11) in this review were at the undergraduate level. Although it is favorable to introduce social medicine earlier, specialist colleges also
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have a role to play. It will be easier for residency programs to develop consensus easily and the colleges may have access to resources at their disposal to facilitate integration and develop a longitudinal program. A review of the tools used for screening social determinants will allow the colleges to identify and select the most appropriate tool within their context and specialty. Regular continuous professional development activities can also encourage health professionals to consider the social determinants of health in their treatment plans as well as when supervising the trainees and students.
3.2.5 Create Interprofessional Experiences Social medicine provides an excellent opportunity to plan interprofessional experiences. Interdisciplinary approach with residents from various disciplines, i.e., family medicine, general internists, and pediatricians (Strelnick et al. 2008), will create a culture of collaborative learning. Similarly, the involvement of other health professionals will lead to better learning outcomes (Bradley et al. 2021; Changiz and Alizadeh 2021). In this review, the authors did not find interventions which have incorporated multidisciplinary education except in three studies. In one study, faculty from business school was also part of the teaching team (Holtzman et al. 2020). In the second study from Switzerland, a number of disciplines were involved to design the curriculum to prepare students to understand the sexual harassment (Lüthi et al. 2022). Voller et al. (2022) implemented social medicine in both the USA and Uganda and included health sciences students learning alongside community workers. Is it because the term “social medicine” is relevant to doctors only? This is an area to be explored but from experience and observations, the health professionals acknowledge that the social aspect of medicine is not limited to one profession. 3.2.6 Involve Learners as Active Partners Students can play a major role in refining the curriculum and should be supported by the institutions, but it should not be their responsibility. There is also a perception among medical students that the reliance on social medicine is too much while they do not see it as important. One study in the USA observed race and gender differences when assessing the time spent on the SDH and attitudes of the medical students. The results show that Black students were over four times as likely as White students to feel that the existing focus on SDH was not enough. Similarly, women were 2.3 times as likely as men to feel the same (Shahriar et al. 2021). 3.2.7 Acknowledge Health Professional/Provider as a Person A new perspective is added to social medicine where a health professional is not seen solely as the health-care provider but rather as a person whose needs are also important. This is a positive change as society not only includes the patient, carer, and community but the health professional/provider is very much part of society. Only one study addressed the self-care aspect of physicians and the other study employed theater-based techniques with medical students as active participants. This is definitely a paradigm shift and will bring positive outcome to better learning and working environment if the scope of health professionals can be broadened to
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include health providers who are all part of the system that is mandated to improve the well-being of society.
3.2.8 Broaden Education Framework Social medicine can be integrated within other disciplines in a structured way. This will enable the educators to develop a set of competencies which is critical for developing a twenty-first-century health professional, for example, critical thinking, creativity, and collaborative practice. Collaboration with business, engineering, and education faculty outside the health care fields will broaden the scope of social medicine. 3.2.9 Plan Structured Evaluation There is a need for evaluation of the interventions and curricular design to examine the long-term effects on the patient, health professionals, and community in general.
4
Conclusion and Future Directions
Medical education in post-covid era is in process of transformation. This is the right time for revisiting what are the needs for producing future health workforce. Accreditation bodies, specialist organizations, and physician groups in developed countries have recommended social medicine as part of curriculum. This requires a paradigm shift in the way medical education is delivered. The traditional models of teaching health professions rely on physicians and health professionals as educators. In this chapter, the authors observed that immersive experiences through community placements and research-based activities add another perspective to the prevalent teaching model. The effect on the health outcomes is yet to be determined as it takes time and sustainable efforts to see a positive change but a health workforce which is trained with an understanding of the social determinants of health at undergraduate and postgraduate level is expected to provide a compassionate health care. The lack of publications from developing countries is alarming. It should not be assumed that there is no emphasis on social medicine in those countries, but perhaps it is not published in academic journals, or it may still be an area that is not recognized. World Federation of Medical Education can play a pivotal role through incorporating social medicine within its accreditation standards that are applied globally. This will enforce the governments and other stakeholders to allocate funding and resources toward provision of health care that is aimed at reducing health disparities.
References Afolabi T, Borowsky HM, Cordero DM, Paul DW Jr, Said JT, Sandoval RS et al (2021) Student-led efforts to advance anti-racist medical education. Acad Med 96(6):802–807. https://doi.org/10. 1097/acm.0000000000004043 Bakshi S, James A, Hennelly MO, Karani R, Palermo AG, Jakubowski A et al (2015) The human rights and social justice scholars program: a collaborative model for preclinical training in social medicine. Ann Glob Health 81(2):290–297. https://doi.org/10.1016/j.aogh.2015.04.001
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Lowe CR (1970) The teaching of social and community medicine. What should be taught? Proc R Soc Med 63(4):390–392 Lüthi E, Pichonnaz L, Schwarz J, Morier-Genoud P, Dayer C, Rrustemi I et al (2022) Preventing sexism and sexual harassment in medical schools by using Theater of the oppressed as an interactive and reflexive tool. BMC Res Notes 15(1):192. https://doi.org/10.1186/s13104-02206084-2 Manca A, Gormley GJ, Johnston JL, Hart ND (2020) Honoring medicine’s social contract: a scoping review of critical consciousness in medical education. Acad Med 95(6):958–967. https://doi.org/10.1097/acm.0000000000003059 Mangold KA, Bartell TR, Doobay-Persaud AA, Adler MD, Sheehan KM (2019) Expert consensus on inclusion of the social determinants of health in undergraduate medical education curricula. Acad Med 94(9):1355–1360. https://doi.org/10.1097/acm.0000000000002593 Mudaliar A (1953) Aims and content of the medical curriculum: undergraduate medical education. Br Med J 2(4834):468–469. https://doi.org/10.1136/bmj.2.4834.468 Peck EC, Lebensohn-Chialvo F, Fogarty CT (2022) Teaching family-oriented care to family medicine residents: evaluation of a family skills curriculum. Fam Syst Health 40(1):87–92. https://doi.org/10.1037/fsh0000659 Robertson A (1960) The place of social medicine in the medical curriculum. Can Med Assoc J 82(14):724–726 Sand R (1953) Preventive and social medicine. Br Med J 2(4834):471–472. https://doi.org/10.1136/ bmj.2.4834.471 Shahriar AA, Prasad K, Casty K, Rahman ZI, Westerhaus M, Satin DJ (2021) Race and gender differences in medical student perspectives on social determinants of health education: a singleinstitution survey study. Adv Med Educ Pract 12:587–595. https://doi.org/10.2147/amep. S300447 Shalan FH, Ambia S, Martinez B, Jon E, Okorafor U, Yang K et al (2021) Field research experience of medical students: learning and translation from global to underserved US settings. J Cancer Educ 36(1):62–68. https://doi.org/10.1007/s13187-021-02036-9 Shobha M (2022) Needs assessment study for a common post-graduate curriculum in community medicine. Health Forum J 13(1):97–98. https://doi.org/10.51957/Healthline_313_2021 Strelnick AH, Swiderski D, Fornari A, Gorski V, Korin E, Ozuah P et al (2008) The residency program in social medicine of Montefiore medical center: 37 years of mission-driven, interdisciplinary training in primary care, population health, and social medicine. Acad Med 83(4): 378–389. https://doi.org/10.1097/ACM.0b013e31816684a4 Trout LJ, Weisman A, Miller JS, Kramer C, Keshavjee S, Kleinman AM et al (2021) Siamit: a novel academic–tribal health partnership in Northwest Alaska. Acad Med 96(11):1560–1563. https:// doi.org/10.1097/acm.0000000000004239 Voller VK, Olirus Owilli A, Yang AX, Finnegan AC, Westerhaus M (2022) Evaluating the impact of a social medicine course delivered in a local-global context: a 10-year multi-site analysis. World Med Health Policy 14(1):54–73. https://doi.org/10.1002/wmh3.503
Part III Theoretical Frameworks and Social Sciences
Strong Structuration Theory (SST) and Global Public Health Maureen Seguin
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Theoretical Overview and Narrative Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Theories of Social Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 The Empirical Application of Strong Structuration Theory . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Strong Structuration in Global Public Health Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Theorizing Change in Health Systems and Health Delivery . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Theorizing the Social Practices of Persons with Health Conditions . . . . . . . . . . . . . . . . . 4 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
The examination of the interplay between people and their environment is a key focus for global public health research. Strong Structuration Theory focuses on the recursive process between the individual and society, holding great potential to explain the choices individuals make. Despite this explanatory potential, the theory has rarely been drawn upon as a frame of analysis in empirical work in global public health. This chapter consists of two sections. The first is comprised of a theoretical overview that situates Strong Structuration Theory within the broader context of social practice theories. Giddens’ articulation of Structuration Theory is introduced, followed by an outline of Stones’ Strong Structuration Theory, which sought to refine Giddens’ work. This outline includes a detailed description of the empirical application of Strong Structuration theory. The second section consists of a scoping review to identify research that has applied Strong Structuration Theory in global public health research. The review identified 12 articles. Two streams of literature have developed; one focused on M. Seguin (*) Department of Health Services Research and Policy, Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_19
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theorizing change in health systems and delivery (focused on technology and policy), and the second on theorizing the social practices of persons (along with their caregivers) with various health conditions, including obesity and chronic conditions. There were relatively few articles focused on the second theme, representing a gap in the literature. Strong Structuration Theory provides a vantage point to comprehensively explore the impact and context of interventions, and the choices patients and their caregivers make within their social context. Keywords
Strong Structuration Theory · Theories of social practice · Scoping review · Global public health
1
Introduction
The interaction between people and their environment is a key issue for global public health research (Frohlich et al. 2001; Williams 2003; Maller 2015; Blue et al. 2016). This interaction is crucial to understanding the choices people make about their health, as these choices are not made in a vacuum. Rather, people are enmeshed in a social environment that shapes their attitudes and subsequent choices (Blue et al. 2016; Seguin et al. 2022). Despite the recognition of the importance of the social environment in explaining health choices, theories which facilitate analysis of individuals in their environment are relatively underutilized in global public health research (Maller 2015), reflective of a general paucity of sociological approaches to healthcare (Fraser et al. 2019). This chapter comprises two main sections. It begins with a theoretical overview, which situates Strong Structuration Theory within the broader context of social practice theories. It then explores Structuration Theory in more depth, starting with Giddens’ original articulation of Structuration Theory (Giddens 1984). This is followed by Stones’ (2005) Strong Structuration Theory (SST), which sought to unlock the empirical potential of Structuration Theory. The analytic process in empirically applying SST is detailed. The second section consists of a focused scoping review on the few studies which have drawn upon SST to explore global public health topics. It is hoped that this chapter will establish a foundation upon which future empirical studies using SST for global public health research may draw. Before moving on, a quick note about the term “global public health.” A common definition of global public health is nonexistent. A much-cited paper by Koplan et al. (2009) defines global health as “an area for study, research, and practice that places a priority on improving health and achieving equity in health for all people worldwide.” They suggest global health typically takes a multidisciplinary approach to focus on transnational health issues, determinants, and solutions, and call for greater consistency in terminology (Koplan et al. 2009). Despite their call for a common definition, a range of definitions of global health has proliferated in the literature.
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A recent review compiling the spectrum of global health definitions identified several conceptualizations, including a “multiplex approach to worldwide health improvement taught and pursued at research institutions,” an “ethically oriented initiative that is guided by justice principles,” and “a mode of governance that yields influence” (Salm et al. 2021: 1). They also identified a fourth conceptualization, which viewed global health as a vague concept with multiple meanings and historical antecedents. Though a common definition of global health remains elusive, this chapter conceives of global public health research as encompassing projects focused on any health topic (ranging from health conditions to health systems) anywhere in the world.
2
Theoretical Overview and Narrative Review
2.1
Theories of Social Practice
Cultural theories, including theories of social practice, emerged in the social sciences after the “linguistic turn” of the 1970s. Though there is no unified theory of practice (Schatzki 2001), social practices are understood as routinized actions, including physical, mental, and emotional actions (Reckwitz 2002). They are also mental activities; routinized ways of understanding the world. Individuals carry out social practices through space and time: they enact routinized actions and understandings as they navigate their day-to-day lives, perpetuating the structures that reinforce actions. As Reckwitz (2002) notes, “routinized social practices occur in the sequence of time, in repetition; social order is thus basically social reproduction.” Nonetheless, this recursive loop may be disrupted. A crisis or the acquisition of new knowledge may cause a shift in routinized actions. Elements of social practice theory are evident in a broad range of social scientists including Pierre Bourdieu (1977), Anthony Giddens (1984), and Michel Foucault, notably in his works on the History of Sexuality (Foucault 1990 [1985]; Foucault 1997 [1986]). Social practices feature in Harold Garfinkel’s ethnomethodological work (1984 [1967]), and more recently in Judith Butler’s concept of gender performativity (1990). It is beyond the scope of this chapter to exhaustively outline how theories of social practice have been drawn upon in global public health research. Rather, this chapter has a modest aim of providing an overview of the empirical use of Strong Structuration Theory, which is rooted in Structuration Theory (Giddens 1984). Below, Structuration Theory (Giddens 1984), followed by Strong Structuration Theory (SST) (Stones 2005) are outlined.
2.1.1 Structuration Theory Structuration theory seeks to provide an account of individual human agency, which recognizes humans as purposeful actors who (to a greater or lesser extent) understand their own actions and the impact their actions may have on social structures (Giddens 1989). Social structures consist of “rules and resources” from which individual action and interaction arise (Giddens 1976). Social structures become
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internalized into individual views of the social world, which then may shape action. Importantly, actions are not completely determined by structures; agents can act to either reproduce social structures faithfully or challenge them by behaving in ways that transgresses social norms. Giddens’ theory of structuration attempts to avoid assigning primacy to either structures or agents via the “duality of structure” concept, which conceives of structures as both outcomes and mediums of action (Stones 2005). Structuration Theory links macro-level external structures to the micro-level of human action, and considers how each influences the other over time (Shaw et al. 2018). Giddens’ theory of structuration has been a rich conceptual resource for social scientists, opening up the possibility for sensitive analysis of relationships between structures and human experience (Williams 2003) and allowing researchers to explore phenomena at macro-, meso-, and micro-levels (Greenhalgh and Stones 2010). Nonetheless, his theory has been criticized on the basis that the theoretical elements of structure and agency are difficult to operationalize, hampering theory-testing initiatives and empirical work (Archer 1982). As Stones notes (Stones 2005), Giddens was concerned primarily with structure and agency as abstract concepts (what Stones calls “ontology-in-general”) rather than in the empirical application of these concepts to address actual interactions between particular individuals and particular social structures (what Stones calls “ontology-in-situ”). Despite the difficulty in operationalizing Giddens’ concepts, global public health researchers have fruitfully drawn upon his concepts in global public health research (see Beringer et al. 2006; Boonstra and van Offenbeek 2010; Chu and Robey 2008; Geneau et al. 2008; Kairy et al. 2014; Moreira and O’Dwyer 2013; Omilion-Hodges and Swords 2017; Wang et al. 2014; Wheeler et al. 2014; Xiao 2010; Xiao et al. 2014; Delormier et al. 2009). Notably, Giddens’ articulation of Structuration Theory has been used to explore the implementation of technological change in healthcare settings. Barley (1986) drew upon structuration theory to study the introduction of CT scanners in two hospitals in the USA. This work spawned technology structuration theory (Orlikowski 1992) and Adaptive Structuration Theory (AST) (DeSanctis and Poole 1994). The latter modified Structuration Theory by delineating two types of structures: structures built into technology, and structures that emerge as people interact with each other and new technology. AST has subsequently been used to examine the implementation of electronic health records in the USA (Barrett and Stephens 2017), the interplay between health information technologies and clinical work patterns (Goh et al. 2011), and the usage of web-based health technology among Black HIV positive women in the USA (Payton and Kiwanuka-Tondo 2009).
2.1.2 Strong Structuration Theory In an effort to make structuration concepts more amenable to empirical work, Stones (2005) introduced Strong Structuration Theory (SST) which promotes a “quadripartite” cycle of structuration consisting of external and internal structures, actions, and outcomes.
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External structures are conditions for action, including social and professional norms, mores, laws, policies, and standards. Their existence is autonomous to individuals, and includes the physical, social and economic context in which action is contemplated. The concept is roughly akin to Bourdieu’s notion of field (Bourdieu 1977). External structures are internalized by individuals, as knowledge, experience, morals, and patterns of behavior, becoming internal structures. Internal structures are classified into two categories. Conjuncturally specific knowledge of external structures relates to an individual’s knowledge about the social world and how they are expected to act within it. These internal structures refer to the ways the agent-infocus perceive their immediate external structural terrain, acting as a hinge between general dispositions and external structures (Stones 2005). General dispositions, the second type of internal structure, are individual perceptions, worldviews, personal morals, attitudes and beliefs, akin to Bourdieu’s notion of habitus (Bourdieu 1977). A conjuncture between habitus and conjuncturally specific knowledge is drawn upon by individuals to inform a particular course of action, of observed behavior. While all individuals bring capabilities, dispositions, and knowledge to a conjuncture, the action resulting will depend on a range of contextual features forming the external structures and individual understanding of these structures (Greenhalgh et al. 2014b). Action has short- and long-term outcomes; consequences ripple through the position-practice network that links agents, either faithfully reproducing or shifting internal and external structures.
2.2
The Empirical Application of Strong Structuration Theory
Strong Structuration Theory is suited to research questions focused on “ontology-insitu,” rather than the abstract “ontology in general” (Stones 2005). Otherwise stated, SST addresses questions about particular processes in particular times and places. It involves a fine-grained conceptualization of the context of individual action (Browne 2017). The in situ orientation of SST implies a research focus on particular agents, called “agents-in-focus,” in particular circumstances. Research questions focus on the hermeneutics (or actions) of individuals, and how these relate to structures. Stones (2005) advised that research foci may address any or all of the four parts of the quadripartite elements of structuration; an initial focus on one part will logically lead to focus on other parts. Stones (2005) suggests using “methodological bracketing” (formulated by Giddens) as a practical guiding tool to distinguish between an agent’s conduct analysis, and an agent’s context analysis. This approach allows one to focus on concepts most relevant to a piece of research. Conduct analysis considers the agent him/herself, including motivations and actions. As an initial research step, Stones (2005) suggests identifying the general dispositions relevant to a given agent-infocus, followed by their conjuncturally specific internal structures (how agents perceive external structures). The agent reconciles their conjuncturally specific internal structures relevant to the context of immediate action to their general dispositions. This reconciliation then directs the action taken.
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Context analysis focuses on the “terrain of action,” which provides the rules and resources (and possibilities and limitations) within which action takes place. From a researcher’s perspective, after examining the terrain of action one can gain an understanding of the possibilities and constraints of action open to agents. Via their conjuncturally specific internal structures, agents are more-or-less aware of the nuances of the terrain of action, which allows them to think strategically about how they choose to act. Considering context allows researchers to acknowledge the causal powers and influences independent to the agent, which may have by-passed or gone unnoticed by the agent. Thus, context analysis can “round off” accounts given by agents, covering parts of the structuration cycle that conduct analysis cannot. Stones (2005, p. 123) argues that “the two forms of bracketing working together are required to release the substantive potential of structuration theory.” Though the micro-level of SST is concerned with the internal structures and actions of individual agents, this does not imply that the process of structuration can be studied only as an individual phenomenon. Rather, it is possible to explore the process of structuration involving numerous actors through what Stones (2005) calls a “composite strategy.” Among a group of actors, the quadripartite process of structuration will be happening in many different places at the same time, with each agent uniquely situated in relation to external structures. Drawing on Jarzabkowski et al. (2014), Hughes et al. (2022) expanded on the composite strategy to merge multiple observations of a phenomenon into a single, typical narrative. The recent work of Seguin et al. (2022) provides an instructive example to the analytic process detailed above. They recently applied SST to explore adherence to hypertension treatment as a social practice. The data were composed of repeat semistructured interviews and “digital diary” messages submitted through mobile phone over approximately 12 months. The initial focus was on “conduct analysis,” in this case, exploring the actions and motivations of hypertensive patients regarding their medication-taking behavior, distinguishing patterns of medication adherence. Four patterns of action were observed, comprising composite narratives: patients who were adherent, nonadherent, increasingly adherent, and increasingly nonadherent over time. Attention then turned to the general dispositions of agents in each of these categories. Attitudes toward mediation were evidently quite influential in shaping subsequent behavior regarding adherence. Turning to context analysis, the authors traced the external structures, which encouraged particular attitudes (both positive and negative) among patients. Advertisements and health programs in traditional (television and radio) and online formats were frequently cited by agents as informing their attitudes (and subsequent behavior) toward medication, leading patients to support such programs and advertised products, perpetuating their existence as external structures. However, the structuration process is not deterministic. Some patients’ adherence patterns changed over time (becoming more or less adherent), indicating the potential of new information or events such as a health crisis to change attitudes and behavior.
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Scoping reviews are appropriate to determine the scope of a body of literature, and to examine how research is conducted on a certain topic (Munn et al. 2018). This scoping review was undertaken to identify and map existing global public health research using SST. It is hoped this review will provide contextual background for public health researchers wishing to draw upon SST in future projects. Building on several preliminary searches, a final search for the term “strong structuration” (in any field) were conducted on the web of science, global health, medline, and psycINFO databases on 26 January 2022. No other search terms were entered. Abstracts and titles of articles were screened to judge whether SST was used in the study, and whether the study focused on a global public health topic (in accordance with the definition of global public health provided earlier in this chapter). Full texts of articles fulfilling these criteria were accessed and screened. Twelve empirical articles on global public health topics using SST were identified (Seguin et al. 2022; Greenhalgh et al. 2013; Hughes et al. 2022; Hvidt et al. 2021; Porter et al. 2018; Rushforth and Greenhalgh 2020; Shaw et al. 2018, 2020; Jeffries et al. 2017; Chan et al. 2010; Hinder and Greenhalgh 2012; Greenhalgh et al. 2019). Most articles focused on the health system or patients in the UK. Below, the included articles are organized into thematic groups. The first set is focused on theorizing change introduced in health systems and delivery. Within this theme, most articles focus on the introduction of technology, and a minority on the implementation of policy. The second set focused on theorizing the social practices of persons with various health conditions, including obesity and chronic conditions. For each article, the main focus and usage of SST are summarized.
3.1
Theorizing Change in Health Systems and Health Delivery
The main thrust of existing research on SST in global public health focuses on theorizing change within health systems, particularly the introduction of new technologies. This work followed a foundational article (Greenhalgh and Stones 2010) advancing the lineage of using and adapting structuration theories to examine technological change (Barley 1986; DeSanctis and Poole 1994; Orlikowski 1992). The introduction of policy into health systems forms another area of inquiry (Rushforth and Greenhalgh 2020; Hughes et al. 2022). Each is discussed below.
3.1.1 Introduction of Technology into Health Systems Arguing that SST and technology structuration theory under-theorizes technology, Greenhalgh and Stones (2010) turned to insights from actor-network theory (ANT) to theorize technology within a structure-agency-technology triad. Critically, ANT considers both people and technology as constituents of networks. Critics have faulted ANT’s “flat ontology,” which ignores concepts such as structure and agency, solely focused instead on a single plane of network interaction (Harris 2005).
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The assumed symmetry between humans and objects has attracted further criticism (Mutch 2002). Sensitive to these criticisms, Greenhalgh and Stones (2010) combined elements of ANT with SST to capture the micro, meso, and macro nuances at play in the implementation of technology programs in healthcare. In addition to Stones’ original conceptualization of internal structures, which included general dispositions and conjuncturally specific knowledge, Greenhalgh and Stones (2010) propose two additional internal structures: “technology’s material properties and inscribed sociocultural structures,” and “technology’s conjuncturallyspecific functionality relevant to the immediate situation.” This modification of SST has subsequently been referred to as technology-enhanced SST (TESST) (Rushforth and Greenhalgh 2020). Greenhalgh et al. (2013) drew upon five areas of inquiry for a study exploring the values of older people with assisted living needs, and their (non)use of telehealth and telecare. Study participants managed their (often multiple) conditions subjectively and experientially, using and/or adapting technologies as they saw fit. Formal assistive technologies largely did not meet participants’ needs; assisted living technologies did not assist participants to live with their illnesses. Some participants customized their technology arrangements, blending old with new, indicating a “bricolage” approach often facilitated by a family member. Greenhalgh, Stones, and Swinglehurst (2014a) applied SST to explore resistance to a healthcare information and communication technology implemented in England called “Choose and Book.” The technology aimed to provide patients with a choice of time and date for upcoming hospital appointments, to be booked during face-to-face appointments with their GP. The authors drew on SST to analyze the micro processes and interactions involved in the referral process facilitated by Choose and Book. More specifically, they examined the tensions between professional morals and values of healthcare professionals (general disposition internal structure) and their knowledge of Choose and Book (conjuncturally specific internal structures). The authors explored the reasoning (internal structure) and actions (active agency) of individual physicians, patients, managers, and administrators using the system, and how these were shaped by external structures (social and professional norms/values) and the capabilities and shortcomings of the technology (Greenhalgh et al. 2014a). They found physician resistance to Choose and Book arose from three things they knew. First, they felt strongly that patients preferred to be referred to the closest facility (making all other features such as car parking, food quality, or care quality irrelevant). Second, they disagreed with the assumption that Choose and Book would promote competition between hospitals and drive improvements to attract “clients.” Finally, they took issue with the financial incentive gained by the medical practice in offering the choice of referral locations to patients. GPs drew on their own knowledge to make suggestions on referrals, rather than the scores on various attributes of hospitals. Further, they were reluctant to shift from a professional to technical role; usage of the system challenged their professional identities and “deskilled” them. The Choose and Book system was cumbersome, unreliable, and time-consuming, which presented a further barrier to its adoption by surgery staff.
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Jeffries et al. (2017) drew on SST to explore the implementation of an electronic medicines optimization system in primary care. The tool facilitated stakeholders including GPs, CCG managers, pharmacists, and GP managers to access anonymized patients data, allowing auditing of prescribing practices against national guidelines. The tool also allowed patients to access their own (non-anonymized) data on medication and test results. Like Greenhalgh, Stones, and Swinglehurst (2014a), Jeffries et al. (2017) noted resistance to the implementation of this technology, rooted in the tension between GPs’ habits and being required to familiarize themselves with a new system. They found that the tool reinforced the hierarchy between Clinical Commissioning Groups and GPs by facilitating the surveillance of prescribing behaviors of the latter by the former. Shaw et al. (2018) explored the implementation of virtual consultations used by clinical teams in diabetes, antenatal diabetes, and hepatobiliary and pancreatic cancer surgery in a public-sector healthcare organization (Barts Health NHS Trust, London, UK). For each stakeholder, the authors considered how they viewed external structures and other actors, and how these played into key decisions relating to virtual consultations. Financial pressures faced by the public sector facilitated the introduction of virtual consultations, which were viewed as cost-saving, efficient, and easy for clinicians and patients to conduct. National-level stakeholders viewed the consultations as a rational solution to the challenges faced by a health service serving an ever-increasing patient load, and potentially empowered both clinicians and patients. These assumptions were in contrast to the physicians and patients participating in the consultations. Virtual consulting required considerable time and resources to implement. These barriers were (in some cases) overcome by strong clinical leadership, which shifted staff’s perception of the technology. Nonetheless, high workload and lack of time limited line manager ability to shift staff perception and embed the new technology into routine practices. Clinicians were not universally opposed to the technology; some felt they would make their service more accessible to particularly vulnerable patients who tended to miss face-to-face appointments. Hvidt et al. (2021) used SST to explore the introduction of email consultations as a new health technology within Danish general practices, capturing the interplay between structures and individuals in such consultations. They found that email consultations changed the form and content of doctor–patient interactions. This change was uneven. The interactions were sometimes smooth, but other times tense. The latter led to adjustments in the form and content of interactions. The technology provided a means for doctors to reassert a degree of control over professional boundaries, though the consultations were viewed by doctors as adding to their workload. Porter et al. (2018) explored the implementation of computerized clinical decision support in ambulance care in the UK for older people following a fall. The decision support technology involved paramedics entering observations and patient history onto tablets, which then generated a recommended course of action, which could be logged. They aimed to describe paramedics’ experiences of using the tool and identify factors affecting its implementation and use. External factors included organizational culture and perceived support for decisions to not take patients to
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hospital. Some paramedics used the tool with all eligible patients, some with patients they deemed “suitable,” and some never used it. Outcomes were somewhat different than the intended role of the tool in decision support. Shaw et al. (2020) examined lay and professional carer’s experiences of the introduction of “caring technologies,” which allow carers to organize care activities, such as meal planning, medication coordination, and task allocation and monitoring among multiple carers. Three care organizing technologies were considered, comprised of an online tool, a mobile app, and a text messaging service. All enabled carers to communicate and coordinate tasks. Carers perceived that such technologies did not consider the socio-emotional work of caring, configuring relationships between carers and patients in transactional terms, and were thus “out of tune” with the experience of caring. Though the technologies were rejected by some carers, others integrated then into their caring routines. Greenhalgh et al. (2019) sought to explore the nature of information infrastructure and how, in a health context, it shapes, supports, and constrains technological innovation. They also examined the challenges of implementing and scaling up video consultation services in a UK hospital trust. They identify five characteristics of information infrastructure, including: (1) intricacy and lack of dependability of the installed base; (2) interdependencies of technologies, processes, and routines, such that a fix for one problem generated problems elsewhere in the system; (3) the inertia of established routines; (4) the constraining (and, occasionally, enabling) effect of legacy systems; and (5) delays and conflicts relating to clinical quality and safety standards (pp. 1).
Scale-up challenges included the selection of a platform to support video consultations, the replacement of desktop computers, issues with qualities of calls, and configuration problems with licensed video-conferencing software.
3.1.2 Introduction of Policy into Health Systems Two articles examined the introduction of policy into healthcare through the lens of SST. Hughes et al. (2022) used SST to explore how and why efforts to integrate health and social care have failed to produce desired outcomes including reduced hospital admission and improved patient experiences. They used SST as a framework to outline the conditions that produced integrated care as a meso-level structure, and how it was recursively produced by health and social care professionals and patient’s experiences of the structure. They explore how hospital admissions were shaped (or not) by the dynamics between integrated care and patients and professional’s actions. They conclude that integrated care does not consistently affect patient experiences or outcomes. Rushforth and Greenhalgh (2020) focus on how the attempted introduction of a new classification scheme and management approach for asthma played out at the macro-, meso-, and micro-levels in the UK. At the macro-level, three main social institutions were observed: the government and its agencies, professional standards, and established traditions and practices. A small group of influential respiratory
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academics aligned with the National Institute for Health and Care Excellence (NICE) government body spearheaded the introduction of the new processes/technology to manage asthma. Nonetheless, at the meso-level (conceptualized at the GP practice level), managing asthma was business-as-usual, with nurses leading asthma clinics and following their previous guideline rather than the new. At the micro-level (clinical action), GPs and nurses continued their traditional approach. The authors suggest that, rather than implementing change through introducing new NICE guidelines, the introduction of incremental changes may stand a better chance of changing asthma management in primary care.
3.2
Theorizing the Social Practices of Persons with Health Conditions
A cluster of articles focused on persons with health conditions (along with their caregivers), specifically on obesity (Chan et al. 2010) and chronic conditions (Hinder and Greenhalgh 2012; Seguin et al. 2022). Chan et al. (2010) focused on social structural characteristics in Hong Kong to explore obesity in children. External structures included a lack of regulation over the nutritional value and labeling of food, the limited space available for exercise and food preparation, and a school system, which emphasized academic achievement over physical fitness. Collective memory among caregivers of famine in the late 1950s (and resulting stigmatization of thinness) acted as internal structure among caregivers, leading them to be concerned about children being underweight. These external and internal structures facilitated children eating large portions, often in fast food outlets, and not exercising. Hinder and Greenhalgh (2012) sought to understand how people live with diabetes by observing self-management activities of people with diabetes in the UK. A number of external structures were observed, including incentives for GPs to prevent and manage diabetes, as well as a hospital-based multidisciplinary team offering free diabetes education and a telephone “Care Call” support service. Both facilitated self-management. The authors further observed the impact of the material and social context within the home and local environment upon diabetes management; conditions variously enabled or inhibited self-management. Study participants differed widely in dispositions, ambitions, motivations, cultural perceptions and beliefs, health and information literacy, and how they perceived and framed their condition. Agency, in the form of self-management of diabetes, involved physical, cognitive, and/or emotional work. Some participants were actively engaged in management via blood glucose testing, planning and preparing meals, and obtaining resources for their care, while some participants chose not to manage their diabetes. Seguin et al. (2022) focused on adherence patterns of hypertensive individuals in the Philippines. They drew on SST to interpret factors shaping medication adherence for those who were consistently adherent, consistently nonadherent, and those who became more or less adherent over time. For the consistently adherent group, positive views about prescribed medication and support of family members
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supported adherence. Conversely, negative views of medication and lack of family support were notable among the consistently nonadherent, along with resistance to accepting a “sick” label. A shift toward positive views of medication was detected among those whose adherence improved, against a backdrop of worsening health and increased family support. Participants who became less adherent held negative views on medication throughout the study and experienced an increase in financial stressors over time. This, along with the inconsistent availability of free medication, led these participants to cease or decrease their medication.
4
Conclusion and Future Direction
This chapter provides a compendium of existing global public health research using SST, along with an outline of its empirical application. Most articles focused on the implementation of change into a health system, notably technological change. There were relatively few articles focused on the social practices of patients and caregivers as agents, representing a gap in the literature, which future researchers may want to explore. Notably, almost all papers which have drawn upon SST focused on health systems and/or patients in high-income countries (almost exclusively the UK), reflecting the affiliations of most researchers who have used this approach. The potential to apply SST in other settings is yet largely unrealized. Stones (2005) notes that structuration studies “will benefit from being placed and situated within a broader historical and geographical framework” (pp. 127). Research on patients’ medication-taking behavior (as in Seguin et al. (2022)), and individual engagement in harmful activities such as substance misuse may prove fruitful areas of study using SST as an analytic approach. Future research on actions and decisions of persons displaced by war may be well-suited to analysis guided by strong structuration concepts. The context of displacement, as driven by historical and geographical forces beyond individual control, could be conceptualized as external structures. Through interviewing or other methods, internal structures of displaced persons could be identified and related to these external structures, highlighting how the context shapes choices made. For instance, the strategies used by displaced persons (whether refugee or internally displaced) to cope is shaped by contextual factors and available resources. Outcomes of their actions may include the development of community organizations to represent their interests and gain resources, and perhaps challenge the geopolitical framework that caused their displacement. Strong Structuration Theory provides a vantage point to comprehensively examine the factors that shape human actions and choices, and how these in turn impact the social context framing action. The theory is well-suited for application in future public health research capturing both individual-level action, as well as the context surrounding this action. As such, its potential applicability is extremely broad. It is hoped this chapter will spur others to appreciate the value of Strong Structuration Theory and use it to examine the on-going interplay between individual human behavior and the contextual factors surrounding it
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Theories of Practice and Global Public Health Muhammad Naveed Noor, Isaac Yeboah Addo, and Sujith Kumar Prankumar
Contents 1 2 3 4
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Practice Theories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Practice Theories and Health Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Understanding (Sexual) Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Agency . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Materiality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Relationality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Historically, there have been extensive explanations regarding practices/behaviors that may lead to negative health outcomes. The diversity in these explanations is often the product of various research approaches, arising from different academic disciplines. On the one hand, disciplines like health psychology generally focus on micro-level factors such as the history of family abuse, parental neglect, and mental illness as contributors to things like tobacco and illicit drug/ alcohol use and risky sex. On the other hand, studies grounded in sociological/ anthropological approaches highlight how structural issues like poverty and M. N. Noor (*) Department of Pathology and Laboratory Medicine, Aga Khan University, Karachi, Pakistan Centre for Social Research in Health, UNSW, Sydney, Australia e-mail: [email protected]; [email protected] I. Y. Addo Centre for Social Research in Health, UNSW, Sydney, Australia e-mail: [email protected] S. K. Prankumar Kirby Institute for Infection and Immunity, UNSW, Sydney, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_24
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norms associated with masculinity may contribute to these problems. Practice theories, which started to emerge in the mid-twentieth century offer a useful approach to tracing linkages between micro- and macro-level antecedents. They offer a relational approach through which researchers can examine the material and discursive entanglements that inform the forms, meanings, and experiences of social practices and their health impacts. This chapter provides an overview of the major practice theories and how they have been applied to understand sexual practice. Keywords
Social practice · Practice theory · Sexual risk-taking · Sociology · Public health
1
Introduction
Social practices can be loosely defined as individuals’ customary/habitual ways of performing tasks in various social contexts and domains. Attending school, going to work, preparing meals, and exercising are a few examples of everyday social practices. Just like physical exercise is associated with good health, practices like smoking and illicit drug/alcohol use can contribute to certain negative health outcomes. While biomedicine can help to identify the specific behaviors and biological mechanisms involved in causing illnesses in human beings, their focus on individual agency and biology ignores the impact of social environments on individuals’ behavior, and morbidity and mortality. Indeed, influenced by the biomedical model, over the past several decades, much work in health promotion globally has been focused on attempting to bring positive changes in individuals’ behavior, so their health outcomes could be improved (Blue et al. 2016). Encouragingly, however, increasing attention is being paid to ongoing attempts to develop novel approaches, methods, and tools, to better understand individuals’ routines, habits, and accepted ways of living that are not always easy to change. This chapter explores a theoretical development that has encouraged this paradigm shift: sociological practice theories. It will then discuss how this development contributes to an understanding of global public health issues by considering several studies that view sexual risk-taking as an example of social practice that is linked with increased risk of HIV/STIs, poverty, and mental health outcomes. Once biomedical research discovered that Human Immunodeficiency Virus (HIV) was the cause of acquired immunodeficiency syndrome (AIDS) and that condomless sex was one of the main HIV transmission routes, there has been strong interest in investigating the likelihood of individuals’ engagement in risky sexual practices (Noor 2021b). There is evidence that despite being exposed to this biomedical fact, many people around the world hold beliefs that contradict biomedical knowledge of HIV, something that contributes to their engagement in risky sex (Alawad et al. 2019; Gaston and Alleyne-Green 2013; Nicoll et al. 1993). Since people in Africa and African Americans have disproportionately been affected by
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HIV, they are often seen to hold a belief that HIV is a man-made virus created to reduce their population in the world (Bogart et al. 2019). Research shows that people who held this belief were less likely to trust biomedically recommended ways to protect against HIV, such as condom use and adherence to HIV treatment (Bird and Bogart 2005). Other studies drew associations between poverty, limited education, younger age, and sexual risk-taking (Eubanks et al. 2018; Warner 2018). In explanations about young people’s engagement in risky sexual practices, socialization with peers has also been highlighted as one of the main contributors to this practice (Asrese and Mekonnen 2018). Health psychologists took an individualized approach to investigate sexual risktaking and supporting sexual health and disease prevention interventions. They drew on various psychological theories/models to examine the impact of individuals’ attitudes, beliefs, and sometimes subjective norms on their sexual behaviors. For instance, using the health belief model (HBM), Rosenthal et al. (1992) sampled 195 Australian university students and found that female students’ perceived susceptibility to HIV was independently associated with their sexual behavior. More recently, Grandahl et al. (2017), in their study from Sweden, found that young women who were vaccinated for Human Papillomavirus (HPV) perceived HPV infection as more severe, had more insight into women’s susceptibility to the infection, perceived more benefits of the vaccine as protection against cervical cancer, and had a higher intention to engage in HPV-prevention. In Ghanaian context, Yakubu et al. (2019) assessed the impact of an educational intervention informed by the HBM and found a significant difference in intervention (97.3%) and control (84.4%) group participants for sexual abstinence. Some health psychologists use the theory of reasoned action (TRA) to suggest that social norms play out in shaping intentions that further shape individuals’ sexual behavior (Doswell et al. 2011; Gillmore et al. 2002). Other researchers employed the theory of planned behavior (TPB) to explain that perceived behavioral control and subjective norms have a positive effect on individuals’ intention to engage in safer sex (Lin et al. 2021). According to Noor (2021b), studies employing the integrated behavior model (IBM) demonstrate that attitudes, subjective norms, behavioral control, and the absence of environmental constraints may all be associated with individuals’ sexual behavior. While the health psychology approach gives important insights into cognitive processes linked with sexual decision-making, it neglects the structural/contextual factors that shape individuals’ sexual decisions, choices, and practices. Social theory contributes to an understanding of how intersecting structural forces like poverty, sociosexual norms, and gender inequality may shape sexual practices that may increase individuals’ risk of HIV/STIs. In a study on Pakistani homeless young people, Noor et al. (2021) identified that poverty, homo/transphobia, and domestic violence rooted in the patriarchal social structure set young people’s trajectories into homelessness. To survive, homeless young people engaged in sex work in which they often had condomless sex with clients because practicing on-demand flesh-toflesh sex could help them to generate more income. Similarly, in male dominant societies, practices such as sexual abstinence may be considered emasculating, while
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women’s sexual autonomy is suppressed, as they are not permitted to engage in sex before marriage to maintain the status of “good,” “pure,” or “noble” women (Ussher et al. 2012). Women in these societies may even not be able to negotiate safer sex with husbands, even when they know that their husbands have concurrent partners and may carry HIV/STIs (Parikh 2007). Furthermore, gay men who are rejected by families due to their sexual orientation may likely experience psychological distress, which may be dealt with by using alcohol/drugs. Although gay men’s social networks can be an important source of social/emotional support, they may sometimes act as places where sexual risk-taking may become inevitable (Wilkerson et al. 2010). Overall, such research demonstrates that structural conditions can produce contexts in which it may not be always possible for individuals to refrain from risky sex despite knowing the risk of HIV/STIs, and draw clear links between poverty, commercial sex work, violence, drug/alcohol use, sexual risk-taking, and HIV/STIs (Decker et al. 2013; Noor et al. 2021; Shannon et al. 2008). Understanding the relationship between individual, interpersonal, and structural factors and how this interaction shapes individuals’ practices can offer invaluable insights into practices like sexual practice. Starting from the mid-twentieth century, social theorists such as Pierre Bourdieu, Theodore Schatzki, Anthony Giddens, and Harold Garfinkel advanced their ideas to overcome the structure–agency divide. Reckwitz (2007) was perhaps the first one to term these ideas as “practice theories” – the combination of approaches by which social practice was viewed as an outcome of the constant interaction between social structures and human agency. Thus, going beyond the arguments of whether the social practice is enabled by social structures or agency, theories of practice posit that social practices possess a standardized material and performative character of action enabled by worldviews that individuals form through the process of socialization. Demystifying the benefits of using practice theories for health research is timely considering the growing calls for the translation of health research into practice. Practice theories can help explain the influence of individual- and structural-level factors associated with health behavior, health conditions, and health service delivery. They offer a robust frame for understanding the intersections between research participants’ personal histories, their social fields, and their health conditions or behavior (Read et al. 2022).
2
Practice Theories
While they share many similarities, a single universally accepted theorization of practice theories is difficult to formulate due to the proliferation of different theoretical approaches used by the aforementioned practice theorists. However, the diversity and flexibility of such theories can be understood as a strength, in that they can be applied to more targeted and holistic explorations of social practices and contemporary social issues. Broadly, practice theories help explain how individuals or agents interact within both objective and normative social structures (Hargreaves 2011; Nicolini 2012) and view human behavior as a function of both individual and sociocultural factors within a complex social structure (Bourdieu 1990; Gretton
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1985; Wacquant 2014). They view human practices as having the potential to reinforce existing norms or create the potential for new actions contrary to preexisting norms. For instance, a regular alcohol drinker may avoid alcohol intake at a party of nondrinkers. However, this same person may have no reservations about consuming alcohol at a different party with his “drinking” friends. Practice theories can help to illuminate the forces influencing these two different behaviors by the same person. Harold Garfinkel was perhaps the first to pay attention to the mutually constructive relationship between individuals’ acts and social structures. In “Studies in Ethnomethodology” (Garfinkel 1967), he advanced the idea that social order has a great influence on individuals and this theory has been applied to explain varying social practices predominantly in the Western world. The concept of ethnomethodology can loosely be defined as the shared understandings and actions that individuals perform to achieve social goals. Garfinkel (1967) posited that individuals’ daily life is the manifestation of patterned orderliness and that for individuals to make sense of themselves and the social environment they live in, they use shared methods to achieve specific goals/perform the social practice. Simply, for Garfinkel, social practice is not a random act, but a product of socialization, which can be understood by the concept of ethnomethodology, which: is directed to the tasks of learning how members' actual, ordinary activities consist of methods to make practical actions, practical circumstances, common sense knowledge of social structures, and practical sociological reasoning analysable. (Garfinkel 1967, pp. vii– viii)
Garfinkel’s theoretical ideas address multiple conceptual issues such as individual action, intersubjectivity, and the social production of knowledge that together enable social practice. Most importantly, the concept of ethnomethodology advances the view that social practice has a relational character – individuals recognize the operations of social structures while performing social practice, and in this process, the social structures are reinforced (Heritage 2013). In 1976, Anthony Giddens, in his book “New Rules of Sociological Method,” developed structuration theory, which aimed to deconstruct social organization as a means of overcoming contradictions in existing theories of social activity that dominated social analysis in the 1970s (Giddens 1976). One of these approaches was positivism/naturalistic sociology, which focuses on biological/cognitive processes to understand human behavior (Giddens 1984). Giddens (1984) argued that naturalistic approaches were strong on structure but weak on the action; they considered human action as inert and inept and emphasized the pre-eminence of the social whole over its parts. Giddens’s theoretical ideas attempted to examine how social structure and human agency work to mutually constitute social practice. Contrary to the positivist and micro-sociological conceptualizations that viewed social structure as fixed, Giddens argued that social actors and social structures are mutually constitutive. More importantly, social actors very much reflect social structures whenever they perform actions, and in turn, those actions reinforce social
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structures. For Giddens (1984), there are three dimensions of social structure – signification, domination, and legitimation – which relate to the three dimensions of human agency: communication, power, and sanctions, which are mediated by modalities such as interpretive schemes, facilities, and norms. Using the medical profession as an example, it can be seen that several people work with diverse roles relating to administration, finance, prescribing and dispensing medicines, and treating and managing people. Patients visit clinicians, whose role and power are signified and legitimized by the health structure. In the 1980s, Pierre Bourdieu’s theoretical work (1977) came into existence in which social practice was seen as a product of the interaction between three components that constitute social life: social fields, habitus, and capital. To Bourdieu (1977), society is composed of various integrated spaces of social relations, called social fields such as politics, law, religion, and family. Each social field contains social actors who occupy hierarchical positions and have diverse competencies, worldviews, and a configuration of different forms and magnitudes of resources or forms of capital. When defined less formally, social fields are structured spaces of hierarchical social relationships produced through the unequal distribution of economic and cultural capital. In Bourdieu’s words: A structured social space, a field of forces, a force field. It contains people who dominate and people who are dominated. (Bourdieu 1998, pp. 40)
According to Bourdieu (1977), various social fields are interconnected through a relationship of exchange. For example, the type of education usually determines how an individual will be positioned in the formal job market. At the same time, hierarchy exists between social fields, as the fields with more power tend to shape the dynamics of other fields in connection. For instance, the political conditions can determine the situation of the broader economy of countries, for example, whether it is less favorable for the public, traders, and investors. The concept of habitus in Bourdieu’s theory is an indication of human agency, as for Bourdieu, this is a system of dispositions shaped by individuals’ past and present experiences, which also orient their actions in future social situations. Thus, habitus is “structured” in that it is shaped by individuals’ past conditions of existence. It, at the same time, is “structuring” because it shapes individuals’ present and future practices (Collyer et al. 2015). The third element in Bourdieu’s (2011) theory is the concept of capital, which for him are resources individuals possess. He classifies three types of capital – economic, cultural, and social. According to Bourdieu (1977), social practice happens because of the interaction between social fields, individuals’ habitus (worldviews and competencies), and the forms of capital they possess. Theodore Schatzki (2002) gives his version of practice theory, which posits that human activity may be situated within intertwined practices. For Schatzki (2002, p. 87), social practice is: a temporally evolving, open-ended set of doings and sayings linked by practical understandings, rules, teleoaffective structure, and general understandings.
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To deconstruct the elements of Schatzki’s (1996) practice theory, doings and sayings are activities grounded in bodily movements. The active human body entails three expressions while it does/says anything, including manifestation (i.e., states of mind, sensations, and emotions), signification (i.e., beliefs, expectations, desires, and hopes), and instrumentation (i.e., bodily actions performed in certain contexts). Schatzki also connects materiality with social practice with the concept of material arrangement – a particular constellation of material things giving meanings to doings/says (i.e., differentiating between a bed in a house and a hospital). While each of the above-mentioned theorists differs in their concepts, there are certainly some common elements across their theories that have been greatly used in health research globally. Reckwitz (2007), for instance, identifies materiality, competence, and meanings as three interconnected elements that these theories offer to help understand social practice. This chapter suggests relationality is another key element that enables the analysis of social practices as being a product of the interaction between social structures and human agency. Following a brief discussion on the use of practice theories in health research, the chapter will describe some empirical work that refers to these elements in relation to individuals’ sexual practices.
3
Practice Theories and Health Research
Practice theories have been applied in health research to understand social practices that may bring positive/negative outcomes. Drawing on Bourdieu’s theory of social practice, Lunnay et al. (2011) demonstrate how young women’s decision to drink alcohol was rooted in the social field occupied by peers and how their decisions/ choices to engage/not engage in specific drinking behaviors determined their exclusion/inclusion in relation to this social field. They analyzed that for youth, drinking alcohol was a means not only to accrue or sustain some social capital (i.e., peer networking/friendships) but also to activate some behaviors that were valued within the peer group. Using practice theories, health researchers have identified that individuals’ interests often intersect with the interests of significant groups to which they belong and that traversing interests can become a source of capital for behavior trajectories. They believe that researchers in an ideal research environment need to recognize what the interests of the “field” are and how the individual agent playing in that field perceives or reacts to the intersecting interests to accumulate “capital” that may define behavior trajectories (Lunnay et al. 2011). As an example, research participants can be recruited within their self-identified significant social groups (i.e., family, peer groups, or religious associations, depending on the issue under investigation). Following that, the researcher can critically investigate the values of the significant group toward the health behavior or service in question (i.e., tobacco smoking or breast cancer screening). Next, they can explore how participants view or react to the group’s values and the intersections that evolve to influence behavior trajectories when an opportunity to smoke or attend a screening service arrives. This
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approach can subtly demonstrate how behavior trajectories are influenced by an individual’s search for social recognition within a significant group in a complex social structure. Read et al. (2022) have also applied Bourdieu’s practice theory in their health research and considered physical capital as a tool for understanding painkiller use in sports. They concluded that painkiller use in professional football is a relational process among habitus, capital, and a field and that painkiller use behavior is strongly influenced by social forces and field experiences (Read et al. 2022). Football was considered as the “field” in their study, views about the human body were exemplified as a form of “habitus” while painkillers were regarded as physical capital. Furthermore, Rhynas (2005) and Oerther and Oerther (2018) have discussed the applicability of Bourdieu’s practice theory in nursing research and have underscored the potential for developing valuable insights into the interactions between nurses and their patients within complex social structures. A common thread that runs through most of these studies is that human cognition is not researched separately from sociocultural factors in terms of their influence on health behavior trajectories. The individual agent is regarded as part of the formation of the social norms and what is understood as the norm is the result of intersections between internal and external structures. Thus, research participants are not viewed as passive participants of society, but they also contribute to shaping societal norms as well. Practice theory allows flexible opportunities to analyze different aspects of health behavior, conditions, or services and the approach used will depend on the research questions and aims. While practice theories can be useful in conducting health delivery research due to their flexibility and plurality of ideas, the theory can also be quite challenging to incorporate into some health studies. For instance, the application of the theory can be quite complex in health research methods, such as randomized control trials (Rhynas 2005; Wacquant 2014). Also, one of the key challenges is incorporating a single unified methodology given that there are several practice theorists with similar but differing propositions in the conceptualization of the theory itself (Rhynas 2005). However, continuous health research employing practice theory is needed to gain more insights into the applicability of the theory in various health research domains. Considering the growing interest in research translation, it is important to highlight a few opportunities that exist in the application of the practice theory within the context of practical healthcare service delivery. Applying practice theory in healthcare service delivery can help explain how intersections between individual and sociocultural factors contribute to a person’s health and general well-being (Andermann 2016). Importantly, clinicians in modern-day healthcare service delivery may need to consider a patient’s personal history and sociocultural background when providing care services to them as these factors contribute to overall health and well-being. By reflecting on a patient’s background, clinicians can construct a treatment plan that holistically aligns with the broader needs of patients. For example, rather than always recommending drugs for a homeless person who consistently visits the hospital with malaria contracted from sleeping on the streets, a clinician can provide better healthcare by linking the patient to community-based
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housing support, such as a free housing care program organized by a housing commission. This approach will, however, require a new healthcare model that allows clinicians to interrogate patients’ personal histories to understand the root causes of their diseases and infirmities. Although such an approach may be difficult to implement in most of the current healthcare delivery models, it is necessary and will provide more person-centered and holistic care that incorporates a person’s social health rather than relying on the biomedical model of care that is solely focused on the germ theory of disease causation. By incorporating such new models into healthcare, clinicians can explore the interactions among the field, habitus, and the existing capital for utmost healthcare service delivery. Studies in public health rest on a diverse spectrum and it may not be possible to move in different directions and sum up how practice theories have informed research into various public health domains. Therefore, to be more specific, in the following sections, the chapter draws on studies of sexual practices and demonstrates how the use of practice theories has enabled the identification of materiality, agency, and relationality in choosing to engage in sexual risk-taking.
4
Understanding (Sexual) Practice
Weenink and Spaargaren (2019) suggest that there are three main elements consistent across the aforementioned practice theories: materiality, agency, and flat ontology/patterning/relationality. The sexual practice involves human agency, as individuals go through a thought process to make certain decisions and choices rooted in specific contexts. It also entails materiality: exchanging nonmaterial (i.e., love and affection) and material resources (i.e., money, for example, in commercial sex work; prophylactics such as condoms, implants and contraceptive pills; sex toys; and so on). Sexual practice contains the element of relationality, as the practice is greatly shaped by – and works to reinforce – sociosexual norms. In the following sections, empirical work underpinned by practice theories to further explain material, agentic, and relational elements of individuals’ sexual practices will be analyzed.
4.1
Agency
Agency can be understood as individuals’ capacity to act/react in specific social situations/contexts. Informed by practice theories, various researchers have demonstrated that sexual risk-taking may not be spontaneous or irrational, but something that is often backed by some social logic. Using Bourdieu’s theory of social practice (1977), scholars have demonstrated that individuals’ sexual risk-taking is not always due to a lack of awareness about sexual health risks and safety, but are informed decisions and choices based on their current circumstances. Noor et al. (2021) found that because homeless young people’s lives were characterized by a lack of social/ emotional/financial support, they attempted to obtain these resources by establishing
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intimate relationships and engaging in sex work. While they knew that condomless sex with concurrent partners might increase their risk of HIV/STIs, they did so due to social obligations in intimate partnerships, obtaining more money from skin-to-skin sex, and escaping verbal/physical assault from violent/intoxicated clients (Noor 2021a). However, from a structuration theory perspective, people who are typically perceived to be less empowered exercise agency to achieve some goal (Monto and Milrod 2020). Leddy et al. (2018), for example, in their study with female sex workers in Tanzania, demonstrated the collective agency of female sex workers by identifying the ways in which they ensured physician safety while doing sex work. They found that sex work occurred in three events across time and space: female sex workers first initiated interactions at local bars with clients, followed by a negotiation phase, and then a sexual encounter phase. Because female sex workers knew that alcohol consumption can increase the risk of violence and condomless sex, they came up with unique ways to ensure their safety. These strategies were partnering with bar staff so female sex workers’ beer bottles were filled with plain water and using peer support to counteract the violent behavior of clients. These strategies not just helped female sex workers to avoid intoxication and violence by clients, but also ensured they were paid for their work. The ethnomethodological theory suggests that people deemed at risk for HIV/STIs (i.e., men who have sex with men, injection drug users, and sex workers) draw on common sense knowledge constructed through socialization to shape their beliefs and actions. They make sense of competing risks and priorities and decide what works best in a given social circumstance (Ramos et al. 1995). For instance, married women in societies where men’s sexual promiscuity is accepted are often considered at risk for HIV/STIs, as negotiating safer sex with husbands can negatively affect their reputation (Golobof et al. 2011; Jewkes and Morrell 2010; Yang et al. 2013). Here, women make sense of their circumstances where they have to choose between health and their reputation and/or regard for husbands who are the breadwinners. Okonkwo’s (2018) analysis is a clear example of how individuals recognize their capacities and use them to achieve success in exchanging sex for needed resources. Using Gidden’s concept of structuration, Okonkwo analyzes how female undergraduate students actively use knowledge attained from their socialization with peers to establish sexual relationships with wealthy men to meet their consumerist appetites. From a Bourdieusian view, this sense-making of agents that shapes sexual decisions, choices, and practice can be an outcome of their habitus, which Bourdieu (1990) defined as the system of dispositions structured through individuals’ past and present social experiences. Hence, agency is not just a cognitive function but is something that reflects the very social structures that act upon individuals. Employing the concept of habitus, Anastario et al. (2013) analyzed how the sexual behavior of men in the armed services was shaped by the institutional field and doxa associated with it. Times, when these men were busy in military operations, limited their sexual opportunities, and when they had a period of rest and relaxation, they experienced a strong desire to have sex. Anastario et al. (2013) suggest that men’s
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descriptions of sexual desires indicated behaviors that might have implications for HIV/STIs: visiting commercial sex workers, having sex while intoxicated, and not using condoms in penetrative sex. Inspired by Bourdieu’s practice theory, Green (2008) advanced an understanding of sexual desires and behaviors through the concept of erotic habitus. For him, erotic habitus arises from individuals’ place within the social world, which exposes them to eroticized objects that connect biological sexual function with particular social forms. For Schilt and Windsor (2014), erotic habitus develops sexual habitus that further helps individuals to determine who should be the sex partners and how sexual activity should be performed. Crossley (2004), therefore, suggests that gay men’s sexual risk-taking may be better understood in terms of how they internalize social rejection of their sexual orientation, how HIV has predominantly been linked with sex between men (which exacerbated discrimination against them) and developments in biomedicine to treat HIV. For instance, in the current era, antiretroviral medications help manage the infection and enable people with HIV live healthy lives, making some younger gay men less likely to engage in HIV protective behavior due to not witnessing deaths due to AIDS. Furthermore, condomless sex may also be happening due to social obligations in intimate relationships, as doing so can mark the creation of emotional bonds that indicate love. Hence, the internalization of these experiences leads to gay men developing a habitus of resistance that shapes sexual practices to transgress social norms of gender/sexuality (Crossley 2004).
4.2
Materiality
Further development in sociological practice theory is the post-humanist practice theory, chiefly advanced by scholars working in the disciplines of science and technology studies and feminist new materialism. Gaining influence from the 1990s, the “post-humanist” or “socio-material” turn challenges the anthropocentric bias within the social sciences and humanities when examining social practices. Such an approach is characterized by a “flat ontology” that does not place humans at the “ontological center or hierarchical apex” (Bennett 2010, p. 11); instead, here sexual practice is understood by examining the relationality between human–nonhuman animals, materiality and discourse, across various levels of the individual and society. A socio-material standpoint considers sexuality and sexual practices as spatial, temporal, and material entanglements – what (Barad 2007) terms spacetime-matter phenomena – and are a process of “bio-psycho-social folding” whereby biological, psychological, and social distinctions are blurred and always-evolving (Roberts 2015). From this perspective, practices and phenomena can only be studied when they are positioned within a relational matrix; they “cannot be understood apart from the wider relational assemblages, and the specific historical processes, of which they are part” (Crellin and Harris 2021, p. 473). Socio-material approaches to observing and understanding sexuality and sexual practices also urge researchers to consider the ways in which their research or experimental apparatuses are arranged, which include the equipment used (which
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include objects, technologies, languages), the spaces and periods in which the research is conducted, and how researchers and participants themselves are positioned within the field. The configurations of the research apparatus, as part of the wider research assemblage, are informed by, and inform, what is deemed important to include, which necessarily entail exclusions. Such exclusions, whether deliberate or unconscious, provide important clues as to what researchers – and the societies within which they are entangled – assume to be “legitimate” or “deviant” (sexual) practices. One such exclusion is that of race: for all its potential to illuminate exclusions and identify silences, post-humanist theorizing has been criticized as ignoring racial difference, limiting our understanding of the ways race and sexuality intersect to informing sexual practice, and to the detriment of social justice and antiracist movements (Ellis 2018, pp. 135–136). Understanding sexual practices from a socio-material standpoint, whereby the human is “de-centered,” requires attention to be paid to a wide range of considerations that are involved in the sexual practice assemblage, which entails the “exploration of embodied pleasures that are non-genital, even non-physical, and which are dis-aggregated from discourses that link sex with reproduction and the family” (Fox and Bale 2018, p. 406). These morethan-human considerations include, but are not limited to, money, alcohol, drugs, the spaces involved in developing sexual relations (not just limited to intercourse, but also the physical and digital spaces where sex talk happens), sexual content in the media, state policies that restrict or enable sexual citizenship (such restrictions against same-sex sexual relations, broader decency and morality laws, and marriage equality legislation), and, crucially, psychological effect, which urges consideration for the “affective flow within assemblages of bodies, things, ideas and social institutions, and the sexual capacities this flow produces” (Alldred and Fox 2015, p. 905). Examining these entanglements across various contexts enable researchers to go beyond understanding sexual practices as individually determined, and beyond the ways broader cultural beliefs, moral norms, and social facts support or contradict biomedical knowledge of HIV/STI transmission. They also identify the shape and form of sexual practices, the ways in which they are restrained or allowed to flourish, and the opportunities for resistance. Such knowledge could guide and persuade researchers, clinicians, public health officers, and policymakers to plan research studies that are more sensitive to the local context, develop targeted policies and health communications material, and invest in inclusive, evidence-based, and contextually appropriate health services. For example, Noor (2021, p. 91) in his study on homeless youth in Pakistan, found that applying a materially inflected theory of practice helped to identify and explain his participants’ “pathways to homelessness, their journey on the streets, trajectories into sex work, and sexual choices, decisions, and practices.” In his study, participants spoke about beliefs around love and condom use that contradicted biomedical knowledge and put them at elevated risk of HIV/STI, and also identified ways in which they defied and resisted narratives of deficit that were often forced upon them. Such knowledge supports coordinated action to disabuse young people of assumptions that place them at risk of HIV/STI (e.g., the belief that the withdrawal method and post-sex douching are effective ways
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to protect themselves). Prankumar (2021), in his socio-material study on the intersection of ethnicity and sexuality, found that despite experiencing discrimination, prejudice, and a lack of belonging from their families, sexuality and gender-diverse young minority ethnic Australians felt broadly optimistic about their future, mainly because they felt confident that their material needs, particularly social security and healthcare, were supported by the state, and because they felt connected to aspects of the Australian notions of fairness and egalitarianism. These material elements, while not directly related to genital sexual practice, supported their sexual citizenship and capacity to flourish. They viewed their sense of belonging as exceptional in contrast to what many of their parents had experienced in their countries of origin and comparison, to their impression of the USA as hostile to matters of sexuality, gender, health, and human rights. Such knowledge, derived from material-discursive and affective considerations, supports continued investment in universal healthcare and welfare in promoting inclusion and positive health and social outcomes. The post-humanist/materialist turn on sociology has become a key intervention in our toolkit of understanding sexual practice and its intersection with public health. By enabling the systematic investigation of configurations that inform – and that are informed by – the practices under examination (e.g., sexual practices), sociomaterial approaches have supported a holistic consideration of health advantages or disadvantages and have guided the identification of often surprising meanings these practices can hold, along with opportunities and possibilities for sexual practice, political resistance, and health research. Through questioning assumptions, bridging the agency-structure divide and inquiring about the conditions that promote flourishing, such approaches support a strengths-based, justice-orientated approach toward supporting well-being outcomes.
4.3
Relationality
Another key contribution of practice theories is their demonstration of the mutually constitutive relationship between social structures and human agency and how this produces social practice. Human beings are absorptive of social constructions. Individuals develop unique inclinations due to their specific sociocultural contexts, and their absorptive capacity is perceived to be natural/biological (Green 2008). For Bourdieu (1990), individuals’ social learning is the process of symbolic force whereby social life contents/experiences are inscribed on the mind. Green (2008) suggests that sexual desires are grounded in the social world through “historically specific erotic habitus” – a socially constituted system of dispositions originating from sociohistorical conditions enabling the production of sexual inclinations. Empirical work underpinned by practice has significantly added to an understanding of the mechanisms and processes that sustain the social order. Indeed, the author’ previous work demonstrates that homeless youth who experience social disadvantage due to a lack of family support, poverty, and diverse sexual/gender identities, may establish relationships with peers and perform sex work to improve their social and financial status. Yet, they are stigmatized and live on the margins of society
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because sex work is typically considered to be “immoral.” The very social structures that produce contexts for homelessness are reinforced when homeless youth engage in sex work, and hence, their marginalized social positions are sustained (Noor 2021a). Green’s work in the North American context unveils the dynamics of gay men’s social organization and how this shapes their sexual practices. He introduces the concept of sexual fields to demonstrate gay men with more erotic capital (i.e., good physical characteristics) are the most valued members in the sexual field – the space occupied by gay men to meet sexual needs/desires. Hence, gay men with less erotic capital may assume they are less valued and to establish strong ties within the gay community, they may choose to do things that can help them to achieve this goal. This is why the valued gay men have the power to reject engaging in condomless sex, while the men with less erotic capital may accept such proposals to be adequately positioned within the gay community (Green 2013). This example supports Bourdieu’s proposition about the relationship between the “self” and “social”: Constant, permanent relationships of inequality operate inside this space, which at the same becomes a space in which various actors struggle for the transformation of or preservation of the field. All the individuals in this universe bring to the competition all the (relative) power at their disposal. It is this power that defines their position in the field and, as a result, their strategies. (Bourdieu 1998, pp. 40–41)
Hence, sexual activity is not just a biological function, but it is something that is generated through agency–structure interaction. Sexual desires/inclinations may be shaped by sociohistorical conditions and those inclinations make the human body perform sexual practice in varied ways depending on given social conditions/ contexts.
5
Conclusion and Future Directions
This chapter has attempted to demonstrate the significance of practice theories in understanding the mechanisms through which individuals make informed choices, decisions, and practices. Human action apparently is driven by the coordination of cognition and the physical organs. Because actions lead to the production of negative/positive health outcomes, historically, various methods/approaches have been developed and used to better understand the complexity of those actions. Moving away from individualized and hardcore structuralist approaches, practice theories offer an alternative approach to examining social, physical, and cognitive processes involved in producing human action within varying contexts. Indeed, they help to foreground how actions are contingent on an implicit understanding of the social world and materiality within it (Reckwitz 2007). Although Garfinkel, Giddens, Bourdieu, and Schatzki approach social practice in different ways, their ideas could be narrowed to a single point – social practice is combinedly produced by the interaction between micro and macro forces. Where Garfinkel emphasizes the
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learning of individuals from the social world in the production of practices, Bourdieu and Giddens layout mechanisms through which this learning happens. Schatzki then furthers an understanding by theorizing how individuals engage in a meaningmaking exercise when they say/do something. Health researchers around the world have been significantly benefiting from practice theories to better understand the dynamics of individuals’ social practices and how they contribute to good/bad health outcomes. This chapter exemplifies empirical work on individuals’ sexual practices and how practice theories have helped identify factors that other individualized/structural approaches have been unable to unveil. Where different academic disciplines complement each other to explain one single phenomenon, practice theories may offer a more complete approach to go around those issues. For instance, while sexual risk-taking has quite differently been analyzed through health psychology and structural lenses, they together portray something in which both individual and structural forces play out. The usefulness of practice theories, therefore, lies in the fact that they cover both individual and structural forces at play. For academic researchers worldwide, interest in the application of practice theories to understand social practices and their relationship with health is constantly growing. Nevertheless, programmatic/applied researchers may also need to shift their focus to employ them to identify healthrelated practices and factors that play out in producing them, so that appropriate interventions can be developed and tested.
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Gender Theory and Global Public Health Shane A. Kavanagh, Greer Lamaro Haintz, Hayley McKenzie, Tricia Ong, and Feyisola Opeyemi Adeleye
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Understanding Gender Theory and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Gender as a Social Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Social Inequalities and Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Pathways from Gender to Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Gendered Approaches to Improving Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Applications of Gender Theory in Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Women’s Reproductive Health and Rights: Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Diverse Genders and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Men’s Health: Masculinities and Health Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Critical Perspectives on Gender Theory and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Embracing Gender Diversity in Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Developing Gender Theory for Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Global Perspectives on Gender . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter highlights the value of gender theory for understanding and addressing global public health challenges. It focuses on reducing health inequities that are avoidable and unacceptable in all populations across the world. The chapter is divided into three parts. Part 1 describes how gender is socially S. A. Kavanagh (*) · G. L. Haintz · H. McKenzie · F. O. Adeleye School of Health & Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia e-mail: [email protected]; [email protected]; [email protected]; [email protected] T. Ong DeakinTALENT, Graduate Employment Division, Deakin University, Burwood, VIC, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_25
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constructed within a broader system that sustains gender norms and gender inequalities that intersect with other social inequalities. The section then outlines how gender norms and gender inequalities impact health and how gender theory can inform health promotion, particularly through gender-transformative approaches. Part 2 illustrates how gender theory provides the basis to understand and address specific health challenges through exploring three examples: women’s reproductive health and rights, the health needs of diverse gender populations, and the challenge of men’s health. Part 3 discusses limitations in current approaches to gender and health and suggests ways to further develop a health focused gender theory with a truly global perspective. The chapter concludes with suggestions on future directions for applying gender theory to enhance health across the globe. Keywords
Gender · Gender theory · Intersectionality · Gender inequality · Global health · Men’s health · Gender diversity · Women’s reproduction
1
Introduction
Over the past 20 years a concern with gender issues has become increasingly apparent at the global level. This is highlighted by the inclusion of gender in the United Nations Sustainable Development Goals with Goal 5 aiming to “Achieve gender equality and empower all women and girls” (United Nations Department of Economic and Social Affairs n.d.). The formalization of this goal represents important progress in taking gender-based inequities seriously and recognizes that addressing issues of sex and gender is fundamental for healthy societies. However, despite this progress there are significant challenges to overcome. Globally, women and girls continue to experience disadvantage and inequitable health outcomes on a massive scale (Kennedy et al. 2020; United Nations Department of Economic and Social Affairs 2020). In addition, minority gender groups not only experience disadvantage and inequitable health outcomes but are often discriminated against by health care systems leaving them without adequate care (Winter et al. 2016). And men, who often benefit from gendered social systems, suffer many preventable diseases due to the social expectations of how they should enact “manhood” (Baker 2020). These challenges are interlinked and can only be overcome by applying theoretical approaches to gender that are sufficiently developed to address the complexity of the underlying problems. This chapter highlights the value of gender theory for understanding and addressing global public health challenges and reducing health inequities that are avoidable and unacceptable in all populations across the world. Gender theory is still relatively new to the public health field and is being applied in different ways globally. The chapter provides the reader with multiple perspectives on gender theory to show the breadth of its application and illustrate its potential, and enable
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readers to think critically and contextually about gender and health from a global standpoint. The chapter is structured as follows. Part 1 identifies the key concepts underlying gender theories, acknowledging that there is no one over-riding gender theory, and explores the links between these theories and health. Part 2 provides examples of how gender theory has been applied to understanding and addressing particular health problems. Specifically, we explore the application of gender theory to the challenges of women’s reproductive health and rights, to the health of gender-diverse communities, and to improving men’s health. Part 3 explores limitations in the application of gender theory and highlights potential areas for developing a better theory for public health. The chapter concludes with a discussion on future directions for the development of gender theory to enhance health and well-being for all populations across the globe.
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Understanding Gender Theory and Health
2.1
Gender as a Social Process
The terms sex and gender are commonly used interchangeably and inaccurately. Correctly defined, sex refers to a status based on biological indicators that distinguishes individuals as male or female, or as intersex with characteristics that do not fit typical male and female expectations (Darmstadt et al. 2019). Gender, on the other hand, refers to socially defined roles, norms, and expectations associated with being male, female, and other diverse nonbinary gender identities (such as those who are transgender or gender fluid) (Darmstadt et al. 2019; Diehl et al. 2017; Winter et al. 2016). The complex relationships between sex, gender, and sexuality are discussed later in this chapter. Gender is widely understood as socially constructed, being created and accepted by societies through shared structures and experiences (Hines 2020). A useful theory for understanding these processes is symbolic interactionism, which highlights how social interactions create symbols and meanings in social contexts (Blumer 1969). Shared meanings derived through interactions impact how people perceive and/or act toward things and people in their environment. Through this process items like clothes, material goods, and colors come to be associated with and signify gender. For example, some clothes are considered “men’s clothes” such as trousers or “women’s clothes” such as dresses. These processes extend to expectations about behaviors (for example, occupations, hobbies, and expression of feelings), which are typically considered to be either “male” such as boys playing with trucks and cars, or “female” such as girls playing with dolls (Connell 2020). In many regions and countries around the world there are gendered expectations governing social interactions and social roles within families and communities. For example, boys and girls are socialized differently – boys are educated, girls are raised into domesticity and expected to implement the decisions of their husbands. Ultimately, these
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expectations shape how gender is “performed” and reinforced as a social process (Butler 1988). Gender can also be conceived of as a social structure. This structural aspect of gender arises from the patterning of social relations between genders, particularly between women and men (Hammarström et al. 2014). These patterns shape everyday social practices as exhibited in different social settings such as organizations, schools, factories, sporting clubs, etc., to conform to the social expectations around gender roles thus creating a standardized gender order (Connell 2020). For example, such arrangements can define job specializations in a way that invariably expects men to take on the more risky and tougher roles while women are confined to more protective roles. These processes that regulate and shape behaviors are described by Connell (2020) as “gender regimes,” and together these regimes at the microlevel provide the basis for an overall gender order or gender system that acts across all levels of society (Connell 2012). Gender norms are critical to the functioning of a gender system. These are the often-unspoken rules governing the attributes and behaviors men, women, and other gender groups are expected to follow within a given context (Darmstadt et al. 2019: 2375). They are learned and reinforced across the life course through complex social processes including the effects of social institutions, which enforce gender norms regarding who and what should be valued, and who should be leaders (Darmstadt et al. 2019: 2375; Heise et al. 2019). Gender norms can change over time and vary across cultural environments. For example, in Nordic countries, cooking has traditionally been the preserve of women (Neuman et al. 2017). However, a cultural shift has seen men increasingly engaged in cooking, which is now aligned with their masculine identities (Neuman et al. 2017), though this varies by sub-cultures of social class (Holm et al. 2015). Shifts in traditional gender roles, like cooking, across time and cultures are influenced by broader social and political changes such as globalization, migration, policy contexts, changing family structures, and the increased participation of women in the workforce (Wolfson et al. 2021). To understand the broad processes that shape gender, a concept that is often referred to is patriarchy. Patriarchy can be defined “as a system of social structures, and practices in which men dominate, oppress and exploit women” and operates through social institutions including the labor market, the state, male violence, sexual norms, marriage, and cultural institutions (Walby 1989, p. 214). The concept of patriarchy has been developed through the work of feminist theorists Chaps. ▶ “Feminist Pedagogy, the Women’s Health Movement, and the Rise of the Anti-diet Health Professional,” and ▶ “Feminist Methodology,” who have drawn on it to explain how inequality between women and men arose and became normalized (Lerner 1986). It is a valuable concept for understanding the systemic and institutional structures that shape the gender system and how the historical roots of patriarchy still retain contemporary legacies in modern gender systems. However, the concept can be interpreted as having a narrow focus with reference to only men and women (Grosz 2012), rather than acknowledging multiple gender identities and relationships across gender groups. Lastly, while the gender system can appear intractable and difficult to steer, it does not entirely control how individuals or groups behave. Individuals have an
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opportunity to act creatively to transform harmful aspects of the gender order (Connell 2020). In particular, social movements linked to feminism have contested and recreated social and family roles in many societies over the past 150 years, most evidently in the workplace. While historical norms saw men as the “breadwinner” and women as the homemaker and caregiver (Connell 2020), women have now become increasingly active in the workforce, including in professional and executive roles, and men have increasingly taken some responsibility for caregiving (Gough 2018). This is exemplified by the ongoing effort in Mexico to promote men’s caregiving abilities as termed “paternidad efectiva” toward fostering emotionally engaged fatherhood (Connell 2020). There has also been strong activism regarding the recognition of diverse and nonbinary genders with social movements in many countries leading to the recognition of “third genders” within official documentation (Winter et al. 2016).
2.2
Social Inequalities and Intersectionality
Gender systems are embedded in societies throughout the world and serve a key purpose in the structure and functioning of societies. However, certain structures, practices, and processes can give rise to, and perpetuate, gender-based inequalities and inequities (Connell 2020). The terms inequality and inequity are often used interchangeably, but here we emphasize the work of Hammarström et al. (2014) who refer to gender inequalities as differences in societal power relations between genders with associated impacts on health, and gender inequities as the failure to meet different gender-based health needs, such as women’s reproductive needs. At the broadest level, the gender system legitimizes and sustains the power of men over women (Walby 1989). Men receive multiple benefits from this arrangement and women experience multiple forms of social, economic, and political disadvantage (Connell 1995, 2020). But a more nuanced view of the gender system also acknowledges inequalities within genders. While men as a group benefit from and are often active in sustaining the gender system, the majority of the benefits flow to men in positions of power and men who conform to gendered expectations (Connell 2002). In contrast, politically and economically marginalized men may benefit little, and men who do not conform to gender norms, such as those who are not heterosexual, may be punished for their behavior (Connell 2020). In addition, women, particularly those who are politically and economically advantaged, can also benefit from the gender system by acting alongside men to exploit lower-status women and marginalized men. Gender-diverse people are often at a particular disadvantage being marginalized and denied resources in many cultures (Diehl et al. 2017). The inequalities implicit in the current gender system do not occur in isolation but instead are interdependent with other social inequities (Sen et al. 2007). To understand these processes of gender, researchers have increasingly drawn on the sociological concept of intersectionality Chap. ▶ “Intersectionality and Global Public Health.” As introduced by Crenshaw (1991), the term intersectionality arose from
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the Black feminist movement of the 1960s, and recognized that intersecting identities of gender (specifically, being a woman) and ethnicity (Black African American) interacted to influence social position and lived experiences – in particular, experiences of oppression. Intersectionality has since evolved to recognize that multiple other social and economic factors such as age, income, social class, disability, sexuality, migration status, religion, and location interact to influence lived experiences, in particular inequalities and inequities. In addition, intersectionality has evolved into a prominent theory in gendered discussions. Applying an intersectional lens to gender is relevant for analyzing and responding to how life situations and social structures interact with differing gender identities.
2.3
Pathways from Gender to Health
By shaping societies, gender systems also shape health experiences and outcomes (Gupta et al. 2019). Gender inequalities and gender norms play a key role in this process, acting through different pathways to pattern health opportunities and health risks. A useful concept to understand these processes is embodiment. Embodiment refers to how social experiences are literally “embodied” as they shape our biology, and our risk of disease throughout life (Krieger 2011). There are various pathways through which the gender system is embodied; four pathways are discussed here as identified in earlier work (Heise et al. 2019; Sen et al. 2007). The first pathway is the patterning of exposure to disease risks. Gender norms and gender inequalities pattern who is exposed to factors that impact health (Heise et al. 2019). For example, gender systems cause women, girls, and those of diverse nonbinary genders to disproportionately experience poverty (Diehl et al. 2017; Winter et al. 2016; United Nations Department of Economic and Social Affairs 2020). Gender also patterns the experience of violence. Women are at particular risk of intimate partner violence with an estimated 27% of ever-partnered women aged 15–49 years globally having experienced intimate partner violence in their lifetimes (Sardinha et al. 2022). People of nonbinary gender are also at very high risk of experiencing violence in their communities (Diehl et al. 2017). Related to violence are experiences of gender-based stigma and discrimination. Women and gender minority groups in particular experience gender-based discrimination and stigma at various levels from structural through to individual. For example, for transgender people, at the structural level this may take the form of exclusion from education, employment opportunities, and health and social services (Divan et al. 2016). At the individual level, transgender people have also been found to experience transphobia and exclusion from familial and social networks (Divan et al. 2016). Another example is the high rates of interpersonal stigma and discrimination experienced by women who engage in premarital sex in various countries (Dhungel 2017; Gyan 2018; Ong et al. 2019). For example, in Nepal stigmatization of women has been found to not only have psychological impacts on women themselves, but can affect the women’s families and village communities, including impacts across generations (Dhungel 2017: 129; Ong et al. 2019).
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A second pathway through which the gender system impacts health is healthrelated behaviors. A key aspect of this pathway is gender norms. Some gender norms can be health-protective. Women are more likely to engage in many healthprotective behaviors (Courtenay 2011), while men can appeal to gender norms to preserve health (Sloan et al. 2010). However, girls also engage in high-risk activities (Kennedy et al. 2020) while men and boys often have a greater likelihood of engaging in health-damaging behaviors such as smoking and overconsumption of alcohol (Courtenay 2011; Kennedy et al. 2020). Gender norms also impact accessing health care with some male gender norms linked to a lower likelihood of engaging in psychological help-seeking (Wong et al. 2017). A third pathway through which the gender system impacts health is through gendered health service provision, which can act to disempower gender groups, or leave their health needs unmet (Gupta et al. 2019). For example, health services rarely cater to the needs of transgender people or provide services that are genderaffirming (Winter et al. 2016). In addition, gender can influence perceptions of disease and lead to inadequate care. For example, the perception of cardiovascular disease as a male problem leads to women’s cardiovascular disease being underdiagnosed and inadequately managed (Woodward 2019). A fourth pathway is gender biases in health research. Data gathering methods may include gender-biased assumptions, such as not allowing for people who do not identify as male or female, or by not asking men about gendered behaviors like childcare (Gupta et al. 2019). Researchers also have the potential to contribute to “erasure” and oppression of diverse gender groups by failing to use gender-specific approaches that identify the health needs and barriers of those groups (Restar et al. 2021). There is also a need for research participants to accurately reflect the population with women sometimes underrepresented in studies of medication efficacy (Scott et al. 2018). The preceding pathways are intertwined with the broader social and political processes that are related to the gender system. For example, social processes including educational parity and labor force participation, as well as political participation, have been linked to improvements in life expectancy (Heymann et al. 2019). The gender system also shapes commercial processes that impact health with the marketing of unhealthy products that target men and women by appealing to gender norms. Perhaps the most famous example is the “Marlboro Man,” an archetype used to promote smoking to men based on individuality (White et al. 2012).
2.4
Gendered Approaches to Improving Health
The focus to this point has been on gender theory and the insights it provides for understanding how health and disease are socially patterned. However, how can we use these insights to create change to improve health? Pederson et al. (2015) provide a valuable conceptualization of gender-based approaches to improving health. Their model suggests five approaches organized on a continuum based on the degree to
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which each approach addresses gender inequity: (1) gender unequal, (2) gender blind, (3) gender-sensitive, (4) gender-specific, and (5) gender-transformative (Pederson et al. 2015: 143).
From Pederson et al. 2015: 143, reprinted with permission courtesy of Oxford University Press ©
At the low end of the continuum are gender unequal approaches, which perpetuate gender inequities, and gender-blind approaches, which ignore gender norms. Next are gender-sensitive approaches, which acknowledge, but do not address gender inequities, and gender-specific approaches which acknowledge gender norms and consider men’s and women’s specific needs (although the needs of diverse nonbinary people are not addressed). Finally, at the high end of the continuum are gender-transformative approaches, which seek to transform harmful gender roles, norms, and relations and ultimately to address gender inequities. Essentially, as one moves from the low end to the high end of the continuum, one moves from gender inequity which is viewed as exploitative, to accommodating gender diversity and lastly, achieving gender-transformative approaches (Pederson et al. 2015). A key insight from the model is that the degree to which gender-based approaches seek to address gender inequity and create deeper change varies. Some programs may have strong gender-transformative elements that challenge harmful gender norms and overcome gender inequities. An example of these is the programs to reduce sexually transmitted infections and violence that have been implemented in multiple countries in Africa, Asia, and Latin America, and also in the United States (Dworkin et al. 2013). Such programs use community engagement to challenge narrow definitions of masculinity and to allow men to embrace alternative forms of masculinity that are not damaging to women, children, and themselves (Dworkin et al. 2013). However, while gender-transformative approaches offer the most potential for deeper social change, they require work that challenges both gender norms and the social structures that support gender inequality. This is not always possible. In some cases, other approaches have merit for improving health. For example, gendersensitive approaches can be used to engage with hard-to-reach groups (WHO 2018). For example, it has been challenging to engage middle-aged men in weight-loss programs partly because these men can perceive current weight-loss
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services to be female-dominated and incompatible with their needs (Elliott et al. 2020). However, gender-sensitized approaches that design programs around the ideals and values held by this group of men, such as using sporting clubs, have shown great promise in engaging this group in health improvement (Hunt et al. 2014). The variety of approaches and specific challenges suggests a need for flexibility and sensitivity in applying gendered approaches. For example, gender-sensitive or gender-specific approaches may be required for recruitment, such as recruiting female research assistants to interview women who have experienced intimate partner violence in cultures where such violence by men is considered acceptable due to the patriarchal societal structure. Then, specific aspects of program delivery may need to take a gender-transformative approach, such as men facilitating programs that address men’s violence against women in cultures where this issue is culturally sensitive for women. Further, gender-specific approaches may be required to develop policies for specific groups (such as women, transgender people, or men) while emphasizing gender-transformative aspects of policy recommendations. Importantly, interventions that address gender diversity in sensitive ways are lacking. There is a need for programs that are not only gender-sensitive for gender-diverse people but are also gender-affirming (Winter et al. 2016). In addition, a further important consideration is that interventions must be sensitive to intersecting hierarchies so as not to inadvertently create greater disadvantage (Sen et al. 2007). Further, gender-related changes may be context-specific, meaning that changes in one setting may lead to empowerment, while in a different setting these same changes may not lead to meaningful change (Malhotra et al. 2002). For example, a greater capacity for women’s economic earnings may have a different meaning where women control those earnings to where the earnings pass to a male guardian (Mason 1986).
3
Applications of Gender Theory in Global Health
This part of the chapter shows how gender theory can be applied to explore and understand health issues facing different population groups. Three examples are illustrated: women’s reproductive health and rights, the health of gender-diverse communities, and the challenge of improving men’s health. In doing so, the authors of this chapter are conscious that the examples replicate constructions of the femalemale binary, and those that do not fit within that binary are discussed together as a third group to construct a ternary. However, it is not our intention to perpetuate this ternary and the “othering” of nonbinary gender identities, but rather to provide illustrative examples that are reflective of the current overarching state of knowledge and information regarding gender and health. The express intention is to highlight that there is still much work to be done to transcend this ternary for more gendertransformative discussions and action. Indeed, concepts of diversity, intersectionalities, and hegemonic masculinities are discussed within the examples below in a way that challenges problematic categorizations.
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Women’s Reproductive Health and Rights: Intersectionality
Women’s reproductive health and rights (WRHR) are fundamental for human health. WRHR includes the freedom to decide the number, spacing, and timing of any children; access to safe, affordable, and effective contraception and termination of pregnancy; and autonomy and privacy in the decision-making process (United Nations Populations Fund 2021). The critical importance of WRHR for health and development is currently recognized through its inclusion in the United Nations Sustainable Development Goals; Target 5.6 “Ensure universal access to sexual and reproductive health and reproductive rights as agreed in accordance with the Programme of Action of the International Conference on Population and Development and the Beijing Platform for Action and the outcome documents of their review conferences” (United Nations Department of Economic and Social Affairs, n.d.). WRHR take place and are impacted across the life course, but particularly in the reproductive years. Not only do women suffer avoidable mortality and morbidity from poor reproductive health care and outcomes, but negative impacts of poor reproductive health can impact offspring across the entire life course and may also be transmitted intergenerationally (Aizer and Currie 2014). The interaction of gender inequities and economic and social inequities is likely to be particularly damaging for women’s reproductive health and the health of children (Aizer 2011). Genderbased inequities may amplify intergenerational health disadvantages by increasing the negative impacts of poor reproductive outcomes tied to low social position (Shonkoff et al. 2012). Women are constantly negotiating their reproductive health, rights, and choices. However, WRHR is highly contentious and debated in the public sphere. Connell (2012) contends that control of women’s reproduction has historically been institutionalized and controlled by men and policymakers. Attempts to break this control to enable women to reclaim their reproductive rights have led to immense and intense global struggles around issues such as abortion and contraception access, whereby the private has become public such as at the United Nations Populations Fund (UNFPA) International Conference on Population and Development (ICPD) in 1994. At the ICPD, which was attended by 20,000 participants from 170 countries, women’s rights to control their bodies were fiercely debated by governments, religious bodies, International Non-Government Organizations, Non-Government Organizations, women’s and feminist rights organizations, the media, and more (Horner and Taylor 1998). The ICPD was considered a major historical turning point in ensuring WRHR remained on global health agendas and women’s reproductive health became more than population control (Cohen and Richards 1994). Feminist work also supports the connection between the public and private spheres, highlighting that the personal is political (Campbell and Wasco 2000; Smith 1978). In fact, “the phrase that ‘the personal is the political’ was designed to draw attention to the political meanings and imperatives that derive from women’s everyday experience of their personal and private lives” (Hughes 2002, p. 152). Therefore, the private and personal nature of women’s reproductive health and rights are impacted by the broader socio-cultural environment (including policy, services,
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religion, traditional gender roles, and gender norms), and the structural environment, which reflect, reinforce, and perpetuate those socio-cultural norms. Feminist theory also aims to address the inequality between men and women, and further, recognize the diversity of women’s identities and experiences. However, while women experience their reproductive health and rights in unique and individual ways, “women” and their identities and experiences tend to be homogenized in the public domain and discourses, including how women are represented. For example, an analysis of Australian WRHR policy identified that, as a collective, policy instruments work to regulate, control, and support some women and their reproductive health, but at the same time these policies marginalize other women by failing to account for the diversity of women and positions to be included (Graham et al. 2018). As such, the structural environment reinforces the dichotomy and binary of men and women to the detriment of those that don’t “fit” in the categories constructed. While WRHR continues to be a contested and political issue, women continue to experience their WRHR in diverse ways with unique gaps and inequities in access to reproductive health and rights. This suggests that viewing WRHR through an intersectional lens can help in understanding inequities and bringing about transformative change. Kapilashrami (2020) argues that taking an intersectional approach is particularly important to enable greater visibility of women’s experiences and to uncover the unique disadvantages of particular women. In addition, applying an intersectional lens can reveal the interdependent impacts of disadvantage, and allows examination of the ways that structures of power interact to produce multiple forms of disadvantage. Ultimately, taking an intersectional approach ensures the diversity and complexity of women’s identities and experiences are considered to benefit all women.
3.2
Diverse Genders and Health
The division of people into neat binary gender categories does not reflect the reality of human societies. A range of diverse gender constructions beyond the male-female binary exists across cultures. These take many forms such as male-to-female and female-to-male transgender people, those who live part-time as a different gender, people who identify as neither male nor female, people who identify as bi-gender, those who do not identify as being of any one particular gender or as pan-gender, as well as culturally specific and unique gender identities (Diehl et al. 2017: 389–90; Winter et al. 2016). Globally, there are many examples of culturally established forms of gender diversity. For example, hijras in India identify as an alternative gender containing elements of male and female. They play an institutionalized gender and traditional social role and are seen to have the capacity to bring good luck and fertility (Diehl et al. 2017). Muxes in Oaxaca in southern Mexico are born male but consider themselves a distinct gender with both male and female characteristics. Many Muxes dress as females following the traditional dress of their Zapotec communities (Diehl et al. 2017). The fa’afafine in Samoa are born biologically male but enact typically female roles (e.g., labor roles). Many, though not all, exhibit typically
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feminine characteristics of behavior and dress. They undertake important and valued social and functional roles in families and communities (Schmidt 2017). Engaging with gender diversity on a global level requires acknowledging processes of colonization (Chap. ▶ “Decolonial Methodology in Social Scientific Studies of Global Public Health”), which have had considerable negative implications for gender-diverse groups and limited understandings of gender diversity. A historical example is the precolonial North American nonbinary people who were common and highly valued and respected members of their societies. However, the arrival of Euro-American missionaries overturned these norms, and these people became persecuted and were driven into hiding (Flannery and Marcus 2012: 183). Western cultural discourse often considers non-(male-female)-binary genders as “transgender” or a “third gender.” However, simplistic colonial notions risk homogenizing diverse genders, when in fact gender identities have contextual symbolic meanings and functions, which are distinct and unique across societies. For example, Vander Laan et al. (2015) argue that very few fa’afafine in Samoa would identify or describe themselves using the Western “transgender” identity – just as a Western person identifying as transgender would not identify as fa’afafine. Lim-Bunnin (2020) further argues that to refer to such culturally contextual nonbinary gender identities simply as one “third gender” or “other” from the male-female binary is to reinforce colonial notions of gender binaries and assert epistemic and symbolic violence. Diverse (nonbinary) genders must be able to self-identify and have their identities acknowledged and affirmed to most appropriately and equitably identify and address their health and well-being needs (Winter 2016). Gendered patterning and experiences of health inequities for gender-diverse populations around the world are established and acknowledged in the research literature (de Vries et al. 2020). Gender-diverse populations are more likely to be overrepresented in unemployment, housing stress, and homelessness, and more likely to experience violence compared to those who identify with heteronormative binary genders (Asian and Pacific Islander Equality – North California [APIENC] 2021). Stigma and discrimination are also common experiences for diverse gender people. Although some cultures accord respect for and acceptance of gender-diverse people, these individuals and groups can be rejected by families and excluded from a range of facets of society (APIENC 2021; Winter et al. 2016). Gender-diverse groups are also underrepresented or misrepresented in genderbiased health services, policy, research, and data collection. For example, genderdiverse populations are often conflated in acronyms such as LGBTIQA+ in research, policy, and service provision. This fails to recognize the nuances of diverse identities and their unique needs and confuses matters of gender identity and sexuality. Research practices also reinforce and perpetuate othering, silencing, and gaps in knowledge as they have tended to predominantly privilege heteronormative, binary, cis-gender, and Western epistemologies (Lim-Bunnin 2020; Schmidt 2017). Intersectionality provides an important lens for understanding and addressing the health needs of diverse gendered populations. For instance, the intersection of gender identity with culture is illustrated above and is crucial to understanding the interplay and the resulting impacts on health and well-being. Additionally, across
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settings and cultures, populations who identify as nonbinary also experience intersections with poverty or low social and economic status, and exclusion from health resources, thus compounding health inequities. Approaches to health promotion and intervention should be tailored and consider the unique intersections of genderdiverse groups, to meet their specific needs and enhance engagement between health services and gender-diverse groups (Haire et al. 2021; National Academies of Sciences, Engineering, and Medicine et al. 2020).
3.3
Men’s Health: Masculinities and Health Theory
The relationship between gender and men’s health is complex. The current gender system provides extensive benefits to men; yet, despite these benefits, men perform poorly on many health measures (Kavanagh and Graham 2019). Data from many countries shows men have a lower life expectancy (Wang et al. 2012; WHO 2018), and higher mortality from coronary heart disease (Bots et al. 2017), suicide, and motor vehicle accidents (WHO 2018). A major strand of gender theory for understanding men’s health is masculinities and health theory. Drawing on the sociological literature relating to “masculinities,” this theory identifies idealized forms of “manhood” that shape men’s beliefs and behaviors (Courtenay 2000). A key concept is a hegemonic masculinity, which emphasizes strength and dominance and helps to justify men’s social position with respect to women (Connell 1995). In addition, a range of other masculinities is constructed in relation to this idealized form, such as marginalized masculinities for men who cannot achieve hegemonic ideals (Connell 1995). Masculinities and health theory argue that men benefit from the gender system, but the social norms and ideals they adhere to in sustaining this system damage their health (Courtenay 2000). Specifically, men may attempt to demonstrate the ideals of hegemonic masculinity by displaying strength and a lack of vulnerability through risk-taking behaviors, such as smoking, overconsumption of alcohol, and a lack of engagement with health care (Courtenay 2000). Marginalized men may also seek to compensate for their inferior position through risk-taking behavior (Pyke 1996). In relation to masculinities and health theory, a meta-analysis of 74 studies found men who conformed strongly to the masculine norms of self-reliance, power over women, and “playboy” behavior had poorer mental health and lower psychological health-seeking (Wong et al. 2017). However, the relationship between masculinities and health is complex. Men can also appeal to masculine ideals to justify healthprotective behavior such as physical activity (Sloan et al. 2010). More research is required to fully understand these processes. Masculinities and health theory has served as an initial framework for understanding men’s health patterns. However, some researchers argue that more nuanced approaches are required to fully understand and address men’s health needs. Elder and Griffith (2016) suggest shifting the focus away from men’s poor choices and unhealthy behaviors to acknowledge the impacts of social disadvantage and limited access to resources. Others have cautioned against simplistic or reductive approaches
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to men’s health promotion that fail to acknowledge the complexity of men’s experiences (Smith 2007). Increasingly, approaches to men’s health have eschewed a “deficit” focus and have taken an “alternative masculinities” perspective. For example, Smith et al. (2020) argue that health promotion must embrace alternative and multiple masculinities to understand and support marginalized men. Different gender-based approaches have proven effective in improving men’s health and the health of communities. Gender-transformative programs have shown promise in challenging gender inequalities. A systematic review of gendertransformative programs for men and boys to improve sexual and reproductive health and rights, for example, found a wider community mobilization in the adoption of gender-transformative norms and practices at the structural level is a key ingredient to behavior change. The engagement of trained facilitators who allowed sufficient time for persuasion, modeling, diffusion, and sustaining of change to occur was also identified as key success factor for changing harmful health behaviors (Ruane-McAteer et al. 2020). Concurrently, gender-sensitized approaches show promise for engaging difficult-to-reach men in health programs. For example, The Football Fans in Training program originating in Scotland was designed to engage middle-aged men in group weight loss by using professional sporting clubs as the delivery setting (Hunt et al. 2014). The program achieved substantial weight loss and has now been delivered in multiple countries (Maddison et al. 2019). At the global level, men’s health continues to be overlooked (Baker et al. 2020). The majority of literature and research has come from Europe, North America, and Australia (Baker 2020) with some literature from South Africa (Morrell 2019). Policy and program development is also limited globally and requires urgent attention (Baker 2020). However, the WHO has now published a strategy document for the European region (WHO 2018) and a small but growing number of countries (Australia, Brazil, Iran, and Ireland) have national men’s health policies suggesting growing attention to men’s health as an important global health challenge (Baker et al. 2020).
4
Critical Perspectives on Gender Theory and Health
This part of the chapter discusses current limitations of the application of gender theory and suggests how gender theory can be developed to address global public health challenges.
4.1
Embracing Gender Diversity in Global Health
Within the public health field, there is a need to better recognize sex diversity and gender diversity. Many references to sex continue to include only males and females despite many people not fitting these binary categories. This includes people who are intersex and people who have chosen to alter their bodies to affirm their gender identity. Together, these individuals number in the tens of millions across the globe (Winter et al. 2016). Gender is also still often discussed in reductive binary terms,
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such as male roles and female roles. This practice fails to acknowledge the multiple gender identities discussed in this chapter and that gender norms vary across social realms. A further issue requiring attention is the relationship between gender, sex, and sexuality. These aspects of human societies are interrelated but there is an ongoing debate about whether gender, sex, and sexuality should be considered separately or together. Prior to the twentieth century, sex and gender were viewed as the same, with gender (behaviors of being male or female) intricately linked to reproductive function and thus sex, and differences between the genders were pathologized as being innately biological and linked to the physical bodily form (Hines 2020). Throughout the nineteenth century though, understandings of sex and gender did begin to broaden, and a greater understanding of nonbinary gender diversity began to emerge. The distinction between sex and gender arose through twentieth-century second-wave feminism movements when women’s identities and subjectivities were recognized as linked to power and social structures that privilege men’s power and position over women. Thus, gender came to be understood beyond the biological sphere and recognized as social, and the sex/gender distinction was established (Hines 2020). However, while the sex/gender distinction was useful as a lens to understand social processes, it is problematic, particularly when considering nonbinary sex or gender identities, and non-Western constructions of gender. More contemporary scholarship considers that the relationship between sex and gender is far more complex and intertwined particularly when intersecting identities of sexuality are also involved (Spaid et al. 2022), with Lim-Bunnin (2020) coining the term “gendersexuality” to refer simultaneously to constructions of gender, sex, and sexuality in acknowledgment of their intersections. However, Schmidt (2017) argues that the current state of the literature regarding gender, sex, and sexuality still tends to privilege Eurocentric perspectives with the limited presentation of culturally contextual perspectives. Recognition of the separate yet intersecting nature of these constructs permits acknowledgment of how individuals construct their identities and self-identify through these constructs and their combinations (Lim-Bunnin 2020). Taking this approach has the value of allowing culturally specific understandings of gender that are particularly valuable for studying gender in a global context. As has been illustrated by this chapter, gender is complex and fluid both for individuals and for societies.
4.2
Developing Gender Theory for Public Health
There is also a need to develop better public health-specific gender theory. In a review of the use of gender theory in public health research, Hammarström and Hensing (2018) found researchers are increasingly drawing on gender concepts and theories and applying these in multiple ways. However, they also found limitations including a lack of application of gender theory to specific health outcomes and to major public health problems (such as cardiovascular disease and cancer). Additionally, they note that there has been limited theoretical development from within the public health field and a limited application of gender theory to health promotion.
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One challenge is for practitioners and researchers to move past categorical approaches and integrate multiple gender perspectives when addressing public health challenges (Hammarström and Hensing 2018). For example, men and boys are often not included in active relations with women and girls except as perpetrators of violence and are not viewed as potential agents of change (Connell 2012). This undermines public health interventions that address the underlying social structures that generate the restrictive gender norms and gender inequalities that ultimately contribute to poor health. There is a need for gender-integrated approaches that attempt to understand public health problems by focusing on relations between gender groups, rather than on groups themselves (Connell 2012). Inspiration can be drawn from successful programs to reduce intimate partner violence and sexually transmitted disease risk by engaging men as agents of change (Dworkin et al. 2013). In addition to considering gender issues holistically, there is also a need to better link gender theories with health theories. The pathways through which gender systems impact health are often not well elaborated. Clearly explicating these pathways holds the promise of a more powerful health-sensitive theory incorporating gender. An example of such work is Nancy Krieger’s (2003) social epidemiological models of gender and sex interactions to explain disease.
4.3
Global Perspectives on Gender
Finally, gender theory needs to become truly global. Gender theory has developed primarily in wealthy countries and reflects the cultural assumptions of those populations and researchers. This is problematic and risks the reproduction of inequalities when it is applied to diverse cultures across the globe. One concern is whether gender is a universally applicable concept and not in fact another colonial construct representing the projection of Western perspectives. For example, Oyewumi (1997) has argued that gender is not a central organizing principle within Nigerian Oyo-Yoruba societies and instead represents a Western colonial perspective. However, other theorists have challenged this argument providing a compelling case that gender is relevant in these contexts and reflects how agents within these societies are positioned in the social mix, which is often relative and contextual (Bakare-Yusuf 2003). More broadly, there is debate about the application of gender approaches in non-Western settings. Apusigah (2008) argues that without recognition of cultural diversity, the application of gender theory can act as a form of colonization and calls instead for more sophisticated and engaged forms of knowledge production. Yet, she also cautions that “relativist” positions on cultural diversity can lead to uncritical perspectives on culture-based gendered practices and preclude action to overcome discrimination and oppression. However, there is evidence of positive impacts in some settings. For example, the integration of gender into a public and political discourse on human rights is evident in South Africa and has helped to prioritize women’s rights and gender balance through the provision of supportive structures
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for women irrespective of their social class to play dynamic roles in antiapartheid politics and nation-building (Lewis 2008). These brief examples provide a very superficial review of a complex issue. However, they reinforce a basic point; without a genuine conversation, there is a danger that gender theory can be damaging. Connell (2012, 2014) has argued that global public health needs new paradigms to address local contextual challenges and potentially even hybrid forms of theorizing to adequately reflect global experience. To rise to this task these paradigms will need to better incorporate an understanding of colonialism and neocolonial global power relations in terms of gender, race, and class to advance global public health (Connell 2014).
5
Conclusion and Future Direction
This chapter has introduced and explored gender theory through the concepts of gender, the social construction of gender, and the gender system. It has also explored how gender norms and gender inequalities pattern health and disease, and how gender theories can be applied to overcome public health challenges. Gender theory is still very much in its infancy and its application to public health and health promotion is only beginning to be realized. Several limitations in current practice regarding gender and health have been highlighted, including reductive conceptualizations of gender; limited literature that encompasses gender diversity and integrates multiple gender perspectives to create change; and gaps in the application of gender theory to public health practice. Yet even in its current form its potential now and in the future is obvious. The following considerations should guide the future development of gender theory in public health. First, there is a need for authentic and meaningful engagement with different gender communities in the planning and practice of public health research. Initiatives must ensure interventions are developed and implemented that are appropriate and specific to the identities and needs of diverse groups and affirm gender diversity. Second, relatedly, greater representation of gender-diverse communities in leadership in public health could also help to drive targeted, meaningful, and effective change. Finally, a framework or tool to support change that is theorydriven and brings together multiple perspectives on gender while enabling diversity and contextuality to be acknowledged and appropriately addressed could advance equitable public health practice and advance gender equity.
6
Cross-References
▶ Decolonial Methodology in Social Scientific Studies of Global Public Health ▶ Feminist Methodology ▶ Feminist Pedagogy, the Women’s Health Movement, and the Rise of the Anti-diet Health Professional ▶ Intersectionality and Global Public Health
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Intersectionality and Global Public Health Emma Heard and Britta Wigginton
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 A Brief Background to Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Some Core Tenets of Intersectionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Using Intersectionality to Advance Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Intersectionality as an Epistemological Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Intersectionality to Inform Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Intersectionality as a Tool for Action in Global Public Health . . . . . . . . . . . . . . . . . . . . . . 4 Using Intersectionality Theory in Sexual Violence Prevention: An Example . . . . . . . . . . . . . 4.1 Sexual Violence in Tertiary Education Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Incorporating Intersectionality in Approaches to Sexual Violence Prevention in a Tertiary Educational Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Innovative and creative engagement with social theories is essential if global health researchers and practitioners are going to make transformative change toward health equity. Intersectionality is a versatile tool, which can be used to orient our focus toward the social systems of power that lie at the heart of health inequity. This chapter provides the reader with an introductory overview of
E. Heard (*) Griffith University, Brisbane, QLD, Australia e-mail: e.heard@griffith.edu.au B. Wigginton University of Queensland, Brisbane, QLD, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_26
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intersectionality, its origins, and core tenants, before exploring how global health researchers and practitioners can engage with the theory to deepen conceptualizations of health issues, enhance tools for capturing and understanding experiences of health inequity, and strengthen our approaches to action as we work toward equity. The chapter provides a brief and exploratory example from the first author’s work and proposes some provocations to support readers’ engagement with intersectionality in their global health research and practice. Keywords
Social theory · Intersectionality · Global health · Equity · Inequity · Inequalities · Sexual violence
1
Introduction People are infinite – anonymous
Global health researchers and practitioners are increasingly turning to social theories to better address the complex health disparities that persist in human systems. Indeed, as individuals come to grips with the wicked problems of these times, such as climate change, the COVID-19 pandemic (see Maestripieri 2021), and endemic levels of violence, and seek to respond in their own localized ways, it is important that they have the tools and frameworks to be able to work with complexity toward solutions and opportunities for health and well-being. Among the possible tools and social theories, intersectionality is positioned as a useful and progressive framework for advancing global health agendas that aim to address inequity. Calls for global health researchers to engage in social theories has been loud and clear (Van Belle et al. 2017; Wilkinson et al. 2021). In particular, some have suggested the discipline of global health has been stunted by its lack of theoretical engagement (Wilkinson et al. 2021). In improving the collective practice and impact of global public health, social theories bring the knowledge of patterns of human behavior, refined by social scientists over time, into the frame of global health to better interpret and understand the “nature, consequences, and limitations of any biomedical or public health intervention,” without reinventing the wheel (Wilkinson et al. 2021, p. 1128). Further, global health researchers working in implementation science have argued that in addition to supporting explorations of “what” works social theories can also illuminate the “how, for whom and why” (Van Belle et al. 2017, p. 2). These latter questions are particularly well suited to intersectionality, a theory that enables attention to the structural conditions in which inequity persists and is exacerbated for particular groups. In responding to calls for global health to engage more with theory, particularly those working within equity-focused science, we invite engagement with intersectionality as a means for extending and deepening global health agendas and contributions.
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Intersectionality
2.1
A Brief Background to Intersectionality
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With foundations in Critical Race Theory and Black Feminism, intersectionality provides a framework for striving toward health (and social) equity (Kapilashrami and Hankivsky 2018). Intersectionality draws attention to the way that a person’s multiple identities (including but not limited to gender, race, class/socioeconomic status, ethnicity/cultural background, sexuality, religion, age, and (dis)ability) intersect with social systems of power (e.g., sexism, racism, classism, colonization, Islamophobia, heterosexism, homophobia and transphobia, ageism, ableism) to create unique positions of oppression and privilege (Bowleg 2012; Gkiouleka et al. 2018; Collins 2019; Yam et al. 2021). In doing so, intersectionality joins other important social theories, such as social epidemiology and eco-social theory, in decentering individual factors as determinants of health and well-being to focus on the role of social systems of power and context (Frohlich and Potvin 2008; Krieger 2014; Merz et al. 2021). Intersectionality has exploded as an interdisciplinary social theory since the term was coined by legal scholar Kimberlé Crenshaw in the early 1990s (Crenshaw 1991). In explaining the development of their intersectionality thinking, Crenshaw describes a legal case whereby an African-American woman, Emma DeGraffenreid’s discrimination complaint against an employer was unsuccessful as the court found that no sex discrimination had occurred because the company, by its policy, had hired (white) women and no race discrimination had occurred because the company, by its policy hired African-American (male) people (Crenshaw 2018, September 14). Crenshaw’s seminal article uncovered the way Black women were left unprotected by anti-discrimination laws that protected white women and Black men, but overlooked the experiences of Black women (Crenshaw 1989). This work contributed to decades of activism and scholarship highlighting the ways Black women, First Nations women, and women of color were (and continue to be) excluded from both feminist and anti-racist movements (Combahee River Collective 1977; bell hooks 1981; Hull et al. 1982; Collins 1991; Moreton-Robinson 2000). Indeed, it was as far back as 1851 that Black antislavery activist Sojourner Truth questioned, “Ain’t I a Woman?” (Sojourner Truth 1851). Since the 1990s intersectionality has been adapted by researchers and practitioners from a wide variety of disciplines to undercover and address discrimination related to not only sex/gender and race but a broad range of oppressive social systems (Carbada et al. 2013).
2.2
Some Core Tenets of Intersectionality
Intersectionality is employed in diverse and cross-disciplinary ways to explore and address a wide and varied range of concerns related to inequity, discrimination, disadvantage, and social injustice (Cho et al. 2013; Collins 2019). Approaches to
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using intersectionality are diverse but intersectionality projects share some core tenets (Bowleg 2012; Collins 2015, 2019; Yam et al. 2021). First, people experience multiple identities simultaneously and in ways that are not additive. Intersectionality projects necessarily focus on justice and shifting social systems of power; these systems are interrelated. Further, experiences of oppression and privilege cannot be understood outside time and space; historical, economic, political, and social contexts matter. The following section will briefly expand on each of these tenants to provide a foundational picture of intersectionality before exploring how the theory supports public health globally. To quote poet, activist, and writer, Audre Lorde, “there is no such thing as a single-issue struggle because we do not live single-issue lives” (Lorde 1984, p. 138). A person’s multiple identities are interconnected, and single axis analyses fail to capture the unique experiences of oppression and privilege that are created at their intersection (Bowleg 2008; Hankivsky and Christoffersen 2008; Collins 2015; Collins and Bilge 2016). For example, Australia’s leading organization for the prevention of violence against women highlights that an instance of a white man removing a Muslim woman’s headscarf and making sexual comments is driven by racism, sexism, and Islamophobia as well as the man’s position/s of power (Our Watch 2017). These oppressions are experienced simultaneously (not as a hierarchy) and are more than the sum of each alone (Collins and Bilge 2016). To further demonstrate, Poteat (2021) shows that data collection and reporting of COVID-19 prevalence in the USA was at best disaggregated by race or sex, rendering the exacerbated prevalence and consequences for Latina women invisible. By acknowledging that single axis analysis is incomplete and inadequate, intersectionality makes visible the heterogeneity within groups allowing for a more complex and comprehensive picture of inequity (Gkiouleka et al. 2018; Kapilashrami and Hankivsky 2018). Common traps of using intersectionality include adding other categories to gender, rather than focusing on the ways multiple and simultaneous identities interact, and predetermining the categories or identities to be explored (Keating 2013; Hankivsky and Kapilashrami 2022). Used in this way, intersectionality can “recentre gender” or other single axis of identity and may serve as virtue signaling rather than actually reflecting the enactment of an inclusionary and multicultural approach (Keating 2013, p. 37). Further, intersectionality analysis must go beyond race and/or gender to explore a wide gamut of identities in relation to interrelated structural systems of discrimination and exclusion including ableism, classism, heterosexism, colonialism, and others (Aguayo-Romero 2021). Intersectionality draws attention to these social systems of power. Importantly, it is not a person’s identities that make them vulnerable, these are actually sources of strength and resistance; it is the social systems of oppression and privilege that create these vulnerabilities and must be the focus of work to address inequity (Crenshaw 1989; Fehrenbacher and Patel 2020; Aguayo-Romero 2021; Poteat 2021; Pruden 2022). In the context of global public health, this core tenant is important as a recent
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review of quantitative intersectionality informed studies demonstrated a concerning trend whereby explanatory mechanisms of health disparities were not identified or investigated, creating the implicit assumption that membership to a specific group is a health risk in and of itself (Harari and Lee 2021). As Aguayo-Romero (2021, p. 101) states, “race is often presented as a determinant of health when, in reality, racism is.” Further, social systems of power are interrelated and mutually constructed (Collins 2019). An intersectionality lens demonstrates that we cannot fully understand the foundations and consequences of racism without also considering sexism, ableism, heteronormativity, etc. Intersectionality draws our attention back to these social systems of power, while challenging deficit-thinking and empowering people to explore strengths-based ways forward (Heard et al. 2020; Poteat 2021). Intersectionality research and practice is necessarily tied to social justice goals and can be a powerful tool to address deficit-thinking in global public health (Hankivsky and Christoffersen 2008; Collins 2015). By centering the voices of historically strong and resistant communities, intersectionality challenges researchers and practitioners to resist “othering” groups, viewing and comparing them in relation to the (white, middle class, heterosexual) “norm” but instead take whole experiences of these groups as the starting point (Weber and Parra-Medina 2003; Pruden 2022). Using dominant groups as the referent to which other groups are compared can work to obscure (or worse, perpetuate) the role that privilege and power plays in establishing and maintaining inequity (Harari and Lee 2021). Intersectionality acknowledges the roles of oppression and privilege and that individuals hold various social positions in different and change contexts. (The term “historically strong and resistant” refers to marginalized groups with acknowledgment of their long histories of resistance and strength in the face of oppression. The term is adapted from “historically resilient communities” coined in Ottemöller et al. (2021). Social systems of power differ across time, space, and socio-political contexts, as do individuals’ experiences, narratives, and personal biographies (Collins 2015). Understanding the historical and political contexts within which discrimination and marginalization occur is essential for illuminating the “how” and “why” in addition to the “what” and “for whom” (Kapilashrami and Hankivsky 2018; Aguayo-Romero 2021). Intersectionality research and practice thus necessitates contextualizing issues and solutions, with a strong focus on local understandings, experiences, and solutions (Bowleg 2008; Collins 2019). The chapter now turns to describing some of the ways intersectionality is being used in public health globally to extrapolate how applications of intersectionality can strengthen our discipline.
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Using Intersectionality to Advance Global Public Health
Intersectionality has been taken up by global health scholars, practitioners, and activists and used as an analytic tool as well as a method of inquiry and an instrument for social change (Collins 2015; Bowleg 2021). Drawing on work of key authors
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including Patricia Hill Collins, Lisa Bowleg, and others, the authors have previously explored how intersectionality has been be applied in public health, and health promotion specifically, epistemologically, methodologically, and as a tool for action (Heard et al. 2020). In the following sections, the authors build on this work, drawing attention on some of the ways global health researchers and practitioners can draw on intersectionality across these three modes to encourage further engagement with the theory across disciplines and fields of practice in global public health.
3.1
Intersectionality as an Epistemological Approach
Before intersectionality as an epistemological approach can be understood, it is essential to begin with defining ontology. Ontology is the nature of reality or “what is out there to know about” (Grix 2002). Once individuals have a sense of how they define reality (often viewed as a continuum of realism to relativism), their epistemology stems directly from this as a question of “what and how we can come to know about it?” (Grix 2002, p. 175). Global health research that documents disparities for minority groups commonly fails to address the social and structural contexts that give rise to these disparities (Poteat 2021). In response, intersectionality is increasingly being used as an epistemological approach to understand the foundational causes of inequity – where social and structural contexts are “things” out there to know about (e.g., from a realist ontology), intersectionality can offer the analytical framework through which to “know about it.” Intersectionality as an epistemological approach requires “the adoption of an intersectional way of thinking about the problem of sameness and difference and its relation to power” (Cho et al. 2013, p. 795). In public health, intersectionality as an epistemological approach allows for the illumination of interactions between macro and micro determinants demonstrating how social systems of power intersect with individuals’ multiple identities to affect health and well-being in complex and unique ways. For example, Campell (2020) illustrates how racism, sexism, and xenophobia intersected to create exacerbated job losses and financial stress for Latina women during the COVID-19 pandemic in the USA (Poteat 2021). Latina women are historically among the lowest paid workers in the USA and are employed in face-to-face roles such as housekeeping, retail, and childcare (the roles that were first and longest to experience loses and closures during COVID-19 lockdowns) as well as transport, warehousing, and industrial cleaning (frontline work that puts people at risk during COVID-19 outbreaks). Decades of discrimination including policy-related xenophobia, racism, and sexism has meant that Latina women are more likely to be undereducated and have been largely locked into inflexible and low paid work (Campell 2020; Poteat 2021). Using an intersectionality lens, this research illuminates why specific health disparities exist in this context, shifting the blame from the specific group or individual and demonstrating the foundational causes (i.e., systems and structures) that must be addressed (i.e., racism, sexism, xenophobia) – thereby ‘doing’ political work, resisting the status quo that entrenches individualism.
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Drawing on intersectionality as an epistemological approach allows researchers and practitioners to connect the individual and structural drivers of health and wellbeing; doing so requires advancing research methodologies that can capture such complexity (Bowleg 2017; Gkiouleka et al. 2018; Kapilashrami and Hankivsky 2018).
3.2
Intersectionality to Inform Research Methods
Methodology is “concerned with the logic of scientific inquiry”; it is about the explanation and justification of research methods (i.e., tools and techniques for data collection) and the potentials and limitations of methods (Grix 2002, p. 179). Drawing on intersectionality as a methodology to inform research methods can support transformational change toward health equity. For example, intersectionality as a methodological approach can allow global health researchers and practitioners to examine how social systems of power are at the foundation of health inequity (Bowleg 2017). McCall (2005)’s work extrapolates three uses of intersectionality in research methodology: intra-categorical, anti-categorical, and inter-categorical. Anti-categorical research aims to disrupt preconceived ideas or strict notions about identity categories and intra-categorical approaches look to explore differences within predetermined identity categories (McCall 2005). An inter-categorical approach, arguably the most commonly used, takes identity categories as provisional units of analysis, while acknowledging their fluidity and differing ontological definitions depending on context (McCall 2005; Kapilashrami et al. 2015). Over the last two decades, researchers in global public health have applied intersectionality approaches to qualitative and quantitative methods in ways which deepen understandings through centering minority voices and focusing of social systems of oppression and privilege (Kapilashrami et al. 2015; Bowleg 2017). The complexity that intersectionality demands lends itself well to qualitative methods, including life course narratives, community-based participatory research, ethnography and participatory action research (Bowleg 2017; Alvidrez et al. 2020; Misra et al. 2021). Qualitative methods can capture and integrate essential historical contexts that explain oppressions (Aguayo-Romero 2021). Importantly, qualitative methods can allow for invisible ‘categories’ of identity and intersections to be illuminated by exploring with participants their whole experiences rather than interrogating a specific oppression or social location (e.g., lines of questioning that allow participants to express their social position as understood by them instead of asking specifically about experiences of, for example, sexism or racism) (Bowleg 2008). For example, Kapilashrami and Marsden (2018) adapted a participatory action research approach with an intersectionality lens to uncover health enabling resources available to and used by people in disadvantaged areas in Scotland. Their approach centered on participant-driven methods including photo-voice, spidergrams, and participatory mapping, in addition to traditional interviews. Their approach provided space for participants to define what health enabling resources meant to them individually and ensured that outcomes remained action-orientated
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and locally relevant. Importantly, adopting an intersectionality lens meant that categories of disadvantage were not predefined but emerged from the data, which supported the emancipatory potential of the research (Kapilashrami and Marsden 2018; Hankivsky and Kapilashrami 2022). There are growing explorations of intersectionality in quantitative research, many that build on methods such as multilevel analysis and multivariant regression (Bauer and Scheim 2019; Guan et al. 2021; Harari and Lee 2021; Misra et al. 2021). For example, Nazareno et al. (2021) conducted an intersectionality informed analysis of data from the National Sample Survey of Registered Nurses in the USA to investigate COVID-19-related deaths of Filipino registered nurses. Their analysis contextualized the findings within historical and current political environments to uncover agency and resistance among Filipino registered nurses related to “[the provision of] household income, union advocacy and leadership, job satisfaction and job security” as well as previously invisible structural factors-related to working conditions, labor relations, and costs of living that have contributed to disproportionate deaths among this group (Nazareno et al. 2021, p. 1438). While intersectionality informed quantitative methods are valuable and worthy of investigation, they must be conducted with caution as current quantitative intersectionality informed methods can stray from the theory’s core tenants (Bowleg 2017; Alvidrez et al. 2020; Harari and Lee 2021). Harari and Lee (2021) warn that the use of binary definitions and the focus on differences between predefined categories, both common in quantitative intersectionality informed research, can obscure within-group heterogeneity. Further, there remains a strong focus on gender/sex, class/socioeconomic status and race/ethnicity in quantitative intersectionality informed research, when intersectionality theory highlights the importance of broader social systems of power including but not limited to ableism, ageism, colonization, xenophobia, cis-ism, homophobia, and transphobia (Harari and Lee 2021). By drawing on intersectionality both epistemologically and methodologically, global health researchers are enhancing conceptualizations of health issues, and developing and creatively adapting traditional methods of data collection and analysis to both broaden and deepen understandings of inequity (Bowleg 2021). However, intersectionality is at times used superficially, at the semantic rather than analytic level (Kapilashrami et al. 2015; Alvidrez et al. 2020). The marking, classifying, and dividing – common in intersectionality scholarship according to Keating (2013), can be used to merely acknowledge difference, and stop short of exploring or generating commonalities among communities or populations. In a global public health context, the emphasis on differences (and potential to then foreground deficits/problems), may serve to “function like walls, not thresholds,” leading to restrictive ways of conceptualizing personhood, with a focus on “narrow identity politics and binary-oppositional tactics” (Keating 2013, p. 37). Global public health researchers must pay attention to the potentially reductionist lines of analysis/practice that a focus on difference (according to binary identities) may produce, and the limits of this for transformative research and practice. Learning from/with First Nations epistemologies, methodologies, and methods and more importantly “ceding space” for historically strong and resistant groups to drive
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health research and practice is required for extending global health research in ways that challenge foundational drivers of inequity (Collins 2019; Held 2019; Leitch et al. 2020; Hankivsky and Kapilashrami 2022; Pruden 2022). Emerging intersectionality informed methodologies and methods founded in critical epistemological stances must be further explored to support transformative action toward health equity globally (Bowleg 2008, 2017; Rice et al. 2019; Fehrenbacher and Patel 2020).
3.3
Intersectionality as a Tool for Action in Global Public Health
Intersectionality has a rich history in activism and grass-roots movements challenging oppressive systems and discrimination (Hankivsky and Christoffersen 2008; Collins 2015, 2019). In global public health, intersectionality as a tool for action is emerging and showing promise particularly in health policy development (Hankivsky and Jordan-Zachery 2019) and health promotion (Heard et al. 2019; Heard 2021). There has also been recent work exploring the need for intersectionality informed action to address climate change. Amorim-Maia et al. (2022) highlight limitations of siloed approaches to climate adaption planning that risk exacerbating already entrenched social, economic, and political inequalities (all of which affect health equity). These authors propose an intersectionality informed framework for action that can support “resilient and inclusive futures” through: tackling gender and race inequalities, redressing drivers of differential vulnerabilities, developing ethics and politics of care, adopting place-based and place-making approaches, and operationalizing climate action and community resilience (AmorimMaia et al. 2022, p. 101053). As exemplified by this example, transformative change in public health requires practitioners and researchers to acknowledge and address the systems of power that allow dominant groups access to privilege and resources that support health, as well as bolstering the agency of historically strong and resistant groups (Gkiouleka et al. 2018; Nixon 2019; Leitch et al. 2020; Ottemöller et al. 2021). We see intersectionality as a ‘tool for action’ in its capacity to be used as a practical tool, as well as a way to invite a series of embodied processes that are important for research, teaching, and practice across a range of settings. One emerging example of using intersectionality as a practical tool is the integration of intersectionality into medical training and practice, specifically to improve errors and delays in diagnoses and to address systematic bias (Cho 2019; Samra and Hankivsky 2021). Samra and Hankivsky (2021) describe such practical tools for action in the context of global public medicine including: unconscious bias training; diversity on recruitment panels; recruiting of doctors from historically strong and resistant groups; cultural humility; visual markers across institutions acknowledging history, power, and privilege; diverse bodies in teaching resources; and intersectionality and reflexivity training for medical students. Similar calls have been made in the field of health promotion (Leitch et al. 2020). Like the discussions about intersectionality being paid lip service in relation to research methodology and methods, intersectionality has been critiqued as becoming
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a field for identity politics to take center stage, as people are defined (in opposition) by their social locations/positions (see Keating 2013). Researchers and practitioners must be cognizant to not lose sight of the very reason intersectionality is being used in the first place – for its attention to power structures – and slip into well-established patterns of thinking and logic (i.e., binary thinking) (Nakata et al. 2012). Indeed, a recent scoping review exploring the use of intersectionality in designing and implementing health interventions found that most initiatives were conducted at the individual, microlevel, rather than attempting to bring about structural change (Ghasemi et al. 2021). This is reminiscent of a trend in health promotion whereby there is acknowledgment of structural forces affecting health and well-being but the focus of responding interventions ‘drifts’ toward affecting individual lifestyle behaviors (Carey et al. 2016). Furthermore, another scoping review demonstrated that although public health research exploring racism is increasing, it is commonly atheoretical and ahistorical, documenting that racism exists in healthcare with a lack of focus on macrolevel foundations and, thus, providing little insights for transformative change (Hamed et al. 2022). Transformative action in global public health must maintain a strong focus on challenging social systems of power; intersectionality can be a powerful tool in this regard when used in ways consistent with its core tenants including an orientation to social justice. Critical consciousness and self-reflection are key to integrating intersectionality into public health action in transformative ways (Hankivsky and Christoffersen 2008; Heard et al. 2020; Leitch et al. 2020). When engaging with intersectionality, Collins (2019) implores people to reflect upon their own background and social positions and how these influence their work and reminds us that it is not sufficient to stop there. In an example from scholars who focus on decolonizing pedagogies in an Australian context, Nakata et al. (2012, p. 121) calls for educators (and we extend that to include academics, practitioners, people) to attend to “the conceptual limits of their own thinking,” rather than explaining or accounting for their social positioning. The latter risks reifying overly simplistic categories of difference (e.g., black/white, colonized/colonizer, Indigenous/non-Indigenous) that are ever present in contemporary discourse but which ultimately serve to dilute the inevitable complexity of any space (Nakata et al. 2012). Instead, key authors call for attention to pedagogical tools and an orientation to the politics of knowledge production (Nakata et al. 2012) in order to encourage an open-minded, exploratory and creative inquiry into the limits of current language, to help people understand how they sit within particular knowledge spaces (or disciplines), and to carry these into their practice/actions (Bowleg 2012; McDowall 2021). Drawing on this work, intersectionality as a tool for action in global health can engage people (including and specifically public health researchers and practitioners) in a line of thinking and questioning that assumes knowledge systems (and our positioning within such knowledge systems) are intimately connected with power. This requires intellectual humility and reflective capacities to question the limits of individuals’ lines of thinking, and to develop sophisticated language to navigate these complex entanglements of knowledge, power, and
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meaning (Nakata et al. 2012; Keating 2013). We see these reflexive invitations and calls as key to deepening the possibilities of intersectionality. In the next section, the authors provide one exploratory and imperfect example of taking an intersectionality approach to the prevention of sexual violence with the aim of encouraging global health practitioners to draw on intersectionality as a tool to strengthen their work toward health equity in various contexts.
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Using Intersectionality Theory in Sexual Violence Prevention: An Example
In this section, the authors draw on work that the first author was involved with that attempted to integrate intersectionality in sexual violence prevention in a tertiary educational context. This work was far from perfect and was conducted under the usual resource and institutional constraints, but the authors hope to provide a useful example of the ways intersectionality can begin to be used to understand and address complex health and well-being issues in localized ways for global health practitioners and researchers. The authors focus on some specific aspects of this prevention work, which is not exhaustive of the approaches taken by the institution in their approach to sexual violence prevention and response (Univeristy of Queensland 2019). First, the authors contextualize this work with a brief description of sexual violence in tertiary education settings globally.
4.1
Sexual Violence in Tertiary Education Settings
Sexual violence is a key global health concern affecting millions of women around the world. The World Health Organization (2021) reports that almost one in three women experience intimate partner violence or non-partner sexual violence across their lifetime. Inequity is a leading factor for sexual violence both internationally and within counties; women in low- and middle-income countries report some of the highest prevalence and key groups within high-income settler states such as Australia, Canada, and the USA report both disproportionate rates and exacerbated consequences of intimate partner and sexual violence (World Health Organization 2021). For example, in Australia people with disabilities, people with diverse gender identities and sexualities, and people who are homeless are more likely to have been sexually assaulted (Australian Institute of Health and Welfare 2020). Aboriginal and Torres Strait Islander women experience disproportionate rates of family violence, the impact of which is compounded by violence experienced at the hands of institutions and authorities (Carlson 2021). Sexual violence starts young; internationally, one in four women aged 15–24 years who have ever been in a relationship have experienced intimate partner violence (World Health Organization 2021). Evidence from high-income countries demonstrates that students at university report disproportionally high rates of sexual
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violence. One study conducted by an advocacy group in the UK found that over 60% of students (from a sample of 4491 respondents across 153 tertiary intuitions) had experienced sexual violence (Revolt Sexual Violence 2018). A recent survey of 1540 university students in Aotearoa New Zealand found that 28% of the sample had experienced at least one form of sexual assault (Beres et al. 2020). The settler state of Australia is no exception, a survey of 43,819 students from universities across the country found that 48% of students had experienced sexual harassment in their life (16% since starting university); and 30% experienced sexual assault (4.5% since starting university) (Heywood et al. 2022). The study further revealed that women were more likely than men, students with diverse sexualities were more likely than heterosexual students, and students with a disability were more likely than other students to experience sexual violence (Heywood et al. 2022). These results did not show significant shifts from the results of a similar (albeit not completely comparable) national survey conducted five years earlier (Australian Human Rights Commission 2017). Intersectionality is particularly well placed to address sexual violence given the overt role that power plays in instances of sexual violence; inequality is both the cause and consequence of sexual violence (Armstrong et al. 2018).
4.2
Incorporating Intersectionality in Approaches to Sexual Violence Prevention in a Tertiary Educational Setting
UQ Respect was established as a unit within Student Services at a large tertiary educational institution in Australia to develop and implement sexual violence prevention and response. The team at UQ Respect was made up of a health promotion practitioner, clinical psychologists, and student counselors who worked in collaboration with student leaders, and other workers in key areas across student services (for example, international student well-being, mental health promotion, and student engagement teams). In developing a framework for sexual violence prevention and response, the team discussed key foundational principles that needed to underpin all approaches in order for the work to be effective and safe (Univeristy of Queensland 2019). The inclusion of intersectionality as an underpinning principle (among others) was discussed as important for acknowledging the way social systems of power intersect with students’ diverse and multiple social locations and implications of this for experiences of sexual violence. While the team acknowledged the potential for the inclusion of intersectionality to become tokenistic, the team also believed its inclusion was necessary for ensuring a trauma-informed approach and for holding us accountable to addressing the interrelatedness of oppressive systems, not focusing on sexual violence or gender discrimination in isolation. To give one example of how the team attempted to incorporate intersectionality in their work, staff training on sexual violence prevention included a specific focus on addressing discrimination related to gender identity and sexuality as well as racism and forms of bullying and harassment. Participants were strongly encouraged to complete further “ally” and discrimination and harassment training to deepen and develop more comprehensive understandings of the interacting and
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complex social systems of power producing these issues. While this is an important first step, to make transformative and lasting change, training for global public health practitioners must be a continuous dialogue that illuminates the ongoing and intersectional nature of social systems of power (Hamed et al. 2022). The epistemological acknowledgment of intersectionality also challenged the team to build in practical tools such as reflexivity into their work (Collins 2019). As an example, staff and student training included activities asking participants to critically reflect on their own social locations and how these affect their approaches to sexual violence prevention (Heard 2021). As highlighted above, when done ritualistically, exercises that require the acknowldgement of privilege can work to obscure (and reinforce) social systems of power. Enacted through the epistemological lens of intersectionality, which demands attention to power structures rather than identities only, the purpose of these exercises can shift to be about encouraging participants to see the limits of their thinking and to strive to deeply listen, recognize, make space to hear diverse experiences (Nakata et al. 2012). For example, the first author is a middle-class, educated, White, woman. As a result, she has had minimal and almost exclusively positive experiences with hospitals and police. Thus, her initial thinking about responding to incidents of sexual violence focused on the physical health of and “justice” for the survivor, which initially led her to want to encourage going to hospital and reporting to police. This response failed to recognize the institutional racism that makes hospitals and the justice system unsafe for many people in the community (and is further naïve to the multiple and complex social, cultural, and personal factors influencing a person’s experience of sexual violence). Reflecting on her own social position through an intersectionality lens illuminated her own positions of privilege and prompted her to listen to diverse voices, ensuring diverse people’s experiences and knowledge guided how the team promoted response to incidents in a trauma-informed way, while also striving for social justice and structural change more broadly. Intersectionality allowed the team to see that each person embodies positions of both privilege and oppression in relation to different social systems of power and in different contexts, times, and places (Collins 2015). Critically reflecting on their social locations enabled the team to locate their experiences and understandings of the world in relation to others and in relation to social systems of power; and through this critical reflection the team could consider work to dismantle oppressive systems that live within them and structure the world around them (Nakata et al. 2012). Being a practice-focused organization, their research activity was concentrated on program evaluation and was necessarily designed to capture numbers and draw out key recommendations from students for strengthening our initiatives. This meant research approaches did not always capture the depth of the implications for the breadth of the student population. For example, one evaluation of a social marketing campaign designed to promote compassionate responses to disclosures of sexual violence from peers demonstrated positive impacts, but the team were not able to capture the experiences/responses of key groups including international students or students with diverse gender identities and sexualities (Irvine-Collins et al. 2022). This must be a focus in future research.
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Intersectionality as a epistemology, methodology, and practice tool helped the team center student voices in all prevention work (Heard 2021). One example of this is the recent Respect Is. . . campaign. Respect Is. . . is a campaign designed collaboratively between university students and a local artist, which aims to give voice to students’ perspectives and understandings of what respect means to them (Heard 2022). Consistent with intersectionality (Gkiouleka et al. 2018; Heard et al. 2020), Respect Is. . . takes a strengths-based approach, drawing on students’ diverse knowledge, insights, and beliefs to promote respectful relationships. The campaign includes ten diverse portrait-style artworks each with a speech bubble stating “To me, respect is. . . .” The speech bubbles are filled in by students. Respect Is. . . provides an avenue for students to share their understandings of respect as part of establishing and advocating for safe learning, working and personal environments, and relationships across our community. Respect Is. . . is an interactive artwork and takes numerous forms. Installations of the artworks, which include quotes submitted by students, are present across the campuses throughout the year. Cards with blank speech bubbles are distributed at key events, where students can share what respect means to them. These cards can be added to mural-style displays. The speech bubbles are also distributed on stickers and tote bags as further avenues for the student population to contribute to the discussion about respect in our community. From an intersectionality perspective, this is important for foregrounding the multiple and diverse voices within our student population (Weber and Parra-Medina 2003; Aguayo-Romero 2021). The campaign was also shared on social media, not only to further the reach of the campaign but also increasing the possibility for interaction with messaging – an important consideration for intersectionality informed health promotion (Heard et al. 2020). In the following closing section, the authors propose some considerations and questions that they hope will support global health researchers and practitioners interested in intersectionality to begin exploring ways to embed this critical social theory into their work.
5
Conclusion and Future Directions
Intersectionality is no panacea. Yet, intersectionality shows great potential to strengthen the ways global public health practitioners and researchers both understand and address health inequity. Intersectionality challenges individuals to focus on social systems of power that allow inequity to persist. In drawing on intersectionality, individuals must be wary of superficiality, paying careful attention to concerns that intersectionality could become a buzzword and become disconnected from its origins in Black Feminism and Critical Race Theory, which threatens their ability to critically analyze and shift social systems of power in applying intersectionality as a theory for social change (Davis 2008; Bowleg 2021).
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Here, the authors have acknowledged some of the interdisciplinary opportunities they are exploring as ways of furthering the project of intersectionality (and, by implication, health equity). They note that pedagogical literature, in particular, offers much food for thought in scholarship and practice. Keating (2013) draws heavily on the work of Indigenous peoples, women of color, and Latina women to advocate for ways of cultivating a more nuanced politics of interconnectivity. This supports researchers and health practitioners in departing from dualistic/oppositional practices of categorizing identity to move toward an examination of commonalities (Keating 2013). Within this lies a concern for interrelatedness and a practice of deep listening that appreciates we “cannot fully know” and that any attempts to understand people are “always partial and incomplete” (Keating 2013, p. 195). Such intellectual humility requires a breaking down of dichotomous configurations that “inadvertently reinforce an exclusionary (and often invisible, naturalized) norm” (Keating 2013, p. 43). The task then is accepting that individuals are (to varying degrees) products of social systems of oppression and privilege, and they must choose to listen and attune to the points of complex connections, rather than solely our points of difference (Keating 2013). To see we are all woven into a larger context and that the solution is relational, means a re-thinking of our epistemologies, methodologies, and methods so that we forge together through a politics of interconnectivity. To encourage such intellectual humility, and ultimately support readers of this chapter, the authors have crafted the following questions that we hope will be useful in developing an intersectionality-informed approach to thinking, writing, and acting/being within one’s research and practice: 1. What does power have to do with it? (a) In conceptualizing a problem, how am I considering the interrelatedness of multiple and interacting social systems of power? (b) Am I considering historical, economic, social, and political contexts? How so? 2. In what ways am I enacting binary/categorical thinking in my work and writing? (a) How can I promote interconnectivity and commonality? 3. What disciplinary knowledges shape how I think and what I do/write/teach? (a) How can I begin to question, interrogate, and reflect on these knowledges? (b) Are these ways of thinking contributing to the legacy of the power structures I seek to address? (c) Am I reading outside my discipline? 4. How can I ‘think about the way I think’ (i.e., meta-thinking) as a means for ensuring the legacy of power structures are not persisting in my own practice? (see Nakata et al. 2012). (a) Does this require me to “slow down” before drawing conclusions as I strive to “know” about health inequity (and intersectionality)? 5. Whose voice(s) and experience(s) are foregrounded in my research, writing, and intervention design? Whose voices and experiences are missing?
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Cross-References
▶ Decolonial Methodology in Social Scientific Studies of Global Public Health ▶ Intersectionality Theory and Its Application in the COVID-19 Pandemics ▶ Social Justice and Global Public Health Acknowledgments The authors would like to acknowledge Andrea Strachan and Kim Fletcher for their contribution to this chapter and their ongoing work in addressing sexual violence in tertiary educational settings.
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Intersectional Risk Theory and Global Public Health Anna Olofsson and Katarina Giritli Nygren
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Intersectional Analyses in Global Public Health Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Intersectional Risk Theory (IRT): A Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Intersectional Risk Analyses, Methodology, and Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 An Example of an Intersectional Risk Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Elective Cesarean Sections in Brazil and Sweden . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Docile Birthing Bodies and Utilitarian Obstetricians: Brazil . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Terrified Subjects and Knowledgeable Midwives: Sweden . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Natural Birth . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter shows how intersectional risk theory (IRT) can contribute to a greater understanding of inequality in relation to health risks. IRT is based on a combination of feminist research and risk research. Compared to other theoretical frameworks, it also helps researchers to uncover how the intersections between risk and inequality are in fact mutually dependent and constituted. This chapter first shows the relevance of IRT to global public health research. Then, it introduces the theoretical framework and its methodological implications. To illustrate how IRT can be applied, it provides a concrete example of expert discourses on elective cesareans (ECS) in Sweden and Brazil. The example highlights the intersections between risk and hegemonic norms and social A. Olofsson (*) Risk and crisis research centre at Mid Sweden University, Östersund, Sweden e-mail: [email protected] K. G. Nygren Forum for gender studies at Mid Sweden University, Sundsvall, Sweden e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_27
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positions on gender, age, class, and so on. It also shows that the medical discourse on risk in relation to cesarean sections can be both global and local. Keywords
Intersectional risk theory · Global public health · Elective cesarean section · Expert discourse
1
Introduction
In the wake of the coronavirus disease 2019 (COVID-19) pandemic, risks related to global public health became high on the agenda. An increasing body of research on risk management and prevention has also become available, including issues related to social stratification and power relations in the shape of social class, gender, ethnicity, sexuality, and so on. Over the last decade, we have also witnessed the incorporation of intersectional approaches in the field of public health research (Giritli Nygren and Olofsson 2014), including applied health, public health, and social medicine research (Kapilashrami and Hankivsky 2018). An intersectional approach, with its focus on the interplay between power, structure, experience, and identity, can help us better understand public health both on an individual level and on a global level. This is particularly interesting since the intersectional approach itself is an evolving and diverse field of research, both within feminist theory and in the many areas in which it has been applied (Lapalme et al. 2020). This chapter takes its point of departure from the combination of feminist and risk research to illustrate the relevance of the intersectional risk framework (Giritli Nygren et al. 2020) to studies in global public health. We do so by giving a brief overview of how the intersectional analysis of risk has previously been used in public health research. Thereafter, we introduce intersectional risk theory (IRT) as an analytical and methodological toolbox for studies of global public health issues. We follow this with an exemplifying analysis of expert discourses on elective cesarean sections (ECSs) in Sweden and Brazil, two countries with different welfare systems and different ECS frequencies. The example illuminates the intersections between risk and hegemonic norms and social positions on gender, age, class, and so on. This example further shows that the medical discourse on risk in relation to cesarean sections can be “glocal.”
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Intersectional Analyses in Global Public Health Research
Public health research has long shown how inequalities can influence populations’ health, often measured in life expectancy, at national and global levels (e.g., Marmot 2004). In a 2014 review of the use of intersectionality in health risk research, it was found that intersectional approaches to the analysis of health risks were increasing (Giritli Nygren and Olofsson 2014). The trend has since continued, including studies
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on the COVID-19 pandemic (Ryan and El Ayadi 2020). Review articles (e.g., Merz et al. 2021) note an increase in intersectional studies in public health, some of which attempt to open the black box of health risks (e.g., Monteiro et al. 2013). The recognition of diversity in the health risk research nexus is exemplified in the growing literature on the more fluid nature of sex and gender, viewing gender as a social location and a determinant of health shaped by and in constant interaction with other determinants (Hankivsky and Christoffersen 2008). In the field of health inequality studies, including global public health, it is often the case that researchers start from a position where the intersection of, for example, class, ethnicity, and gender is always relevant (e.g., Iyer et al. 2008). A good example is a way in which intersectionality comes into play in studies of black British Caribbean women’s mental health (e.g., Edge 2013): Epidemiological studies from the UK show strong correlations between deprivation, ethnicity, and mental health, and black British Caribbeans are overrepresented. However, most research in this area is based on studies on men with serious mental illness, but by shifting perspectives and taking the perspective of black British Caribbean women, new conceptualizations of mental health and illness can be revealed. For example, Edge and Rogers (2005) show that women in their study differed between having a depressive illness and feeling depressed. They also tended to fall back on the self-concept of being “strong black women” or turning to spirituality, meaning that they themselves would find strategies and cope without seeking formal help. These strategies gave them the strength to cope, but also potentially served as a barrier to seeking help since depression could also be understood as a sign of personal or spiritual weakness. However, many studies that use intersectional analysis with a focus on health risk inequalities in global public health research still bring comparative group differences to the fore (e.g., Scolese et al. 2020). These studies allow for the examination of combinations of sociodemographic variables. However, they are not always concerned with structural systems of oppression; that is, the linking of risk categories, such as race or sex, is seldom joined with corresponding structural forces, such as racism and sexism (Ford and Airhihenbuwa 2010). The combination of intersectional theory and quantitative methods, common in public health research, is indeed a challenge (Bowleg 2021), but examples of methodological development are promising (e.g., Merz et al. 2021). Furthermore, unmarked categories, particularly whiteness, are often invisible or go unexamined in the literature on health disparities, especially their strong association with privilege and social mobility (Viruell-Fuentes et al. 2012).
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Intersectional Risk Theory (IRT): A Framework
Proceeding from intersectional theory, intersectional risk theory (IRT) has been developed to better understand the links between risk, power, and inequality, and to facilitate analyses of these intersecting processes (Giritli Nygren et al. 2020). Proceeding from intersectional theory, we believe that everyday ideas, practices, and discourses related to global public health risks can also be explored and better
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understood. Given the many ways of understanding intersectionality, it should be mentioned that the reference to intersectionality in IRT is not an attempt to appropriate the concept or to claim it as a new theory. Instead, we wish to acknowledge and apply the knowledge and concepts produced within gender studies for studies on risk (Giritli Nygren et al. 2020). Similar to Cho et al. (2013, p. 795), we also believe that intersectionality is “best framed as an analytic sensibility,” emphasizing how intersectional analysis can be used to capture the relational aspects of categories, identities, and positions; in other words, how intersectional analysis “emphasizes what intersectionality does rather than what intersectionality is” (Cho et al. 2013, p. 795). IRT is based on the assumption of a mutual constitution of risk and inequality (Olofsson et al. 2014); in other words, risk is intertwined with different power structures in societies. This means that risks are not evenly distributed, and the lack of resources and privileged social positions, related to, for example, gender, race, and class, often increases one’s probability of being subject to health and other kinds of risks. Furthermore, the combination, or intersections, of several positions multiply adverse effects. However, the mutual constitution of risk and inequality means more than that; it also means that certain risks become part of the constitution of these social positions. For example, masculinity is intimately associated with risktaking, and when we admit that social positions on the individual level are always intersecting, we can begin to open up the black box of risk. In the previous section, we saw how black Caribbean women’s self-identification as “strong black women” intersected with their understanding of mental illness. Something that might constitute a risk that needs to be managed is thus ignored. However, risk terminology can also hide or obscure such intersecting structures and inequalities (Olofsson et al. 2014). By focusing on unemployment or particular health risk, underlying, and intersecting power inequalities might not be acknowledged in risk mitigation and management. Instead, the individual is treated as a responsible self-regulating subject with equal access to resources, including knowledge. Another example of how risk can hide intersecting structures is risk communication. We can use an example from Sweden: A national campaign to make parents more aware of the risks of skin cancer called “healthy sun habits” initiated by a regional cancer center was carried out by nurses and childcare centers in Sweden, 2014–2017. The subject of protection was not defined in the campaign, assuming that all Swedish kids have white skin sensitive to sun radiation. In this way, taking the need for sun protection as the norm, the campaign hides the diversity of the population and, as we express it, is “doing” the “whiteness” of the Swedish population (cf. Ahmed 2006). Risk communication like this can then be further unpacked by including, for example, gendered caregiving norms. Thus, by introducing IRT, it becomes possible to analyze the entanglement of, in this case, the communication of guidelines on risk exposure, care of others, age, and skin color. Exactly what is thought to be a risk is something determined by where the time– place context is, and thus, where and when we do our risk thinking. However, it is possible to gain knowledge of risk in a given time–place context in terms of how it is done—in other words, how it is understood, described, and used by different actors
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and on different levels of society. The definition, understanding, and management of risk are always filtered through sociocultural norms and values. That is, those who define what a risk is and who is “at-risk” or “risky,” for example, medical professionals, scientists, and politicians, have the power to define the lines of difference (Hannah-Moffat and O’Malley 2007). Essentially, IRT echoes the “doing gender” of gender studies (see, e.g., West and Zimmerman 1987; Butler 2004), as it focuses on the doings of risk combined with the intersectional approach (Crenshaw 1989). There are, for example, countless studies on risk perception showing that women’s perceptions of risk are greater than men’s, almost regardless of the type of risk or threat. Doing risk shows that this is not because women are by nature more risk-averse than men. Instead, many women’s higher risk perceptions should be understood as stemming from their vulnerable social position, but also as part of doing gender, or femininity, and thus, necessary for the individual to pass as a woman, as the hegemonic norm would have it (see West and Zimmerman 1987). To perceive someone as high risk (or low risk if you have a male gender identity) is part of the constitution of one’s gender, a process that is ongoing yet firmly rooted in time- and place-dependent norms of not only gender, but also, for example, class, ethnicity, age, and sexuality, and their intersections. IRT centers on an analysis of the “doing” of risk, not only as discourses that categorize individuals according to certain subject positions, but also as performativity in the context of gendered, racified, and classed norms and identity work (Giritli Nygren et al. 2017, 2020; Montelius and Giritli Nygren 2014). As will be shown in the chapter’s empirical example of cesarean sections, risk discourses legitimize medical authority and define lines of difference associated with classed, racified, and gendered subjects of different moral worth. In the following section, we will elaborate on what it means to methodologically apply IRT in studies of global public health, and what, in more detail, IRT actually does.
3.1
Intersectional Risk Analyses, Methodology, and Methods
Empirical studies in global public health commonly employ large sets of quantitative data to investigate epidemiological data or interpret people’s perceptions and behavioral intentions. Quantitative methodologies can identify possible intersections of risk and inequality (including both privilege and vulnerability) and their effects at the group or community levels (McCall 2005). However, the epistemological underpinnings differ considerably from intersectional approaches. Basically, intersectionality raises the fundamental methodological question of how to analyze such mutually constitutive processes. The point of departure is that, just as qualitative methods are needed to reach an understanding of individual experiences, life trajectories, and discrimination, quantitative methods are also needed to identify possible structures of inequality and the effects of this inequality on a societal, or even global, level (Bowleg 2008). To identify suitable methods for IRT analysis, any given method’s epistemological assumptions in relation to the theoretical underpinnings need to be
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evaluated to find out if it is suitable for intersectional risk analyses (Bauer et al. 2021). That is, researchers need to know how the method is practiced, how questions are asked, whether the method can focus on meaningful constructs, such as prejudice and discrimination, and, last but not least, how its results can be interpreted (Sprague 2005). To provide a better understanding of how to design intersectional risk analyses, we use Choo and Ferree’s (2010) typology. Intersectional studies can be defined as: 1. Group-centered, studying the multiplicity of marginalized groups and their perspectives and theorizing the ways in which lived experiences of oppression cannot be separated into single issues of class, race, and gender. Examples of the methods used include ethnographic studies. 2. Process-centered, studying intersectionality as a process and power as relational and focusing particularly on interactions between variables’ multiplied oppressions. Examples of methods used in these kinds of studies are in-depth individual and group interviews. 3. System-centered, studying intersectionality as a complex system in which gender and race are embedded in cultural institutions and discourses and seeking to identify local and historically particular regimes of inequality. Examples of the methods used are different kinds of discourse analysis. McCall (2005) proposes a similar division but defines them according to how the research handles categories and categorizations: anti-categorical complexity, intracategorical complexity, and inter-categorical complexity. The first two approaches deconstruct analytical categories and question the use of quantifiable variables, as categories are seen as a reductionist way of understanding the complexity of intersecting power relations. When comparing them with Choo and Ferree (2010), intra-categorical complexity corresponds rather well with the process-centered approach. Similarly, anti-categorical complexity corresponds to the group-centered approach. Most intersectional research adopts either of these two approaches, but in public health research, the approach McCall (2005) labels as inter-categorical is predominant (Giritli Nygren and Olofsson 2014). This third approach recognizes that there are relationships of inequality between social groups and takes these relationships as the point of departure for the analysis (McCall 2005). Hence, the focus is on the relationships between categories or social groups, and the meaning of the combination of categories is given at any particular time. However, intercategorical complexity does not correspond to Choo and Ferree, just as the latter’s system-centered approach does not correspond with McCall’s typology. Therefore, we propose that Choo and Ferree’s typology is extended with yet another approach: 4. Relation-centered approach: This fourth approach corresponds to McCall’s intercategorical complexity but adopts a sensitivity to the theoretical assumptions in intersectional theory with regard to categorizations and stability. To measure this relational approach to inequality, explorative methods like multi-correspondence analysis (MCA) could be useful (Öhman and Olofsson 2019)
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This chapter has already shown that almost all conceptualizations of intersectionality touch upon categorizations or the avoidance of categorization, and whether it is appropriate to apply additive or multiplicative methods in the analyses. Less visible, but intimately connected, is the question of the stability versus fluidity of categories/positions. To solve these challenges, Walby et al. (2012) argue that a greater depth in the ontology of intersecting inequalities is required, and so is greater sophistication in the analysis of the way in which these sets of social relations, or systems of social relations, affect each other. This is done by recognizing the historically constructed nature of social inequalities and their sedimentation into social institutions (cf. Choo and Ferree 2010). By viewing “categories,” such as woman and man, as historically institutionalized positions interlocked through social relations, the dichotomy of stable vs. fluid; all categories are positioned and therefore gain meaning in relation to each other, can be overcome (Glenn 2002, p. 13). As will be illustrated below, by viewing gender, race, class, etc. as relational positions that are not static but rather dependent on each other and on the time and space context, it is possible to translate the intersectional assumptions of multiple belongings into quantitative measurements. As Walby et al. (2012) argue, stability is reached through the institutionalization of structures of privilege and oppression, which provide a degree of relative stability to the experience of social inequality. As social institutions change, so does the environment within which specific sets of social inequalities are negotiated and grappled with. The following section aims to give an example of how IRT can be applied in empirical studies, although it should not be considered an exhaustive example of such an analysis since it primarily follows a system-based approach. This example deals with the discourses on elective cesarean sections in two countries: Brazil and Sweden. Brazil, together with Mexico, the USA, and many other countries, has seen an increasing number of cesarean sections in the last 20 years, and in Brazil, about every second birth is given through a cesarean section. The number of cesarean sections is also increasing in Sweden, but compared to other countries in Europe and the Americas, relatively fewer cesarean sections are performed (17% of all births) (Socialstyrelsen 2020). Both medical and public discourses on cesarean sections, particularly elective cesarean sections that have not been medically advised, are characterized by references to risk. Therefore, this is an interesting case to analyze in relation to how risk is “done” in different temporal-spatial contexts (Olofsson et al. 2018).
4
An Example of an Intersectional Risk Analysis
Few areas of obstetric practice attract much debate and prompt such strong opinions as do non-medically indicated elective cesarean sections (ECSs). Some 15% of all births in the world are delivered by cesarean section, but there are great differences between regions and countries. Only 2% of all deliveries in Africa are done by cesarean section, and in Chad and Ethiopia, cesarean sections are almost unknown. In South America, on the other hand, cesarean sections are more common, and Brazil
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and Mexico have some of the highest rates of cesarean sections in the world, accounting for 35–40% of all deliveries worldwide. As in many countries in Europe, the number of births by cesarean section is increasing in Sweden, but compared to other countries in Europe and the Americas, the number is still relatively low (18%) (Socialstyrelsen 2020). The growing number of ECSs in some countries and among particular social groups, as well as increased costs, has fuelled the debate about ECSs. Risk is used both by those who see acceding to maternal requests for cesarean sections as “paving the road to hell” (McCandlish 2006, p. 204), and by private clinics and insurance companies who almost routinely offer cesarean sections because of the claimed risks of vaginal birth. Newspapers such as The Economist and The New York Times have raised the subject and obvious national differences. However, this chapter argues that the attention paid to the practice of cesarean sections and the interest in controlling childbirth should be understood as culturally coded representations in unequal social structures. Few studies take an intersectional approach to childbirth and ECSs, but one early exception is Nancy Ehrenreich, who shows how the interaction between race, class, and gender ideology informed and legitimated medical and legal decision-making in the USA’s reproductive area in the 1980s (Ehrenreich 1993, p. 503). She also illustrates the importance of analyzing all positions from an intersectional perspective, which brings recognition that a privileged position does not necessarily mean the absence of subordination. Rather, it brings with it another kind of subordination or one with different consequences. True, inequality and discrimination are often more extreme for those who find themselves in multiple subordinate positions in the systemic hierarchy compared to those who occupy both privileged and subordinated positions. Furthermore, even though childbirth is intimately associated with gender and women, discourses about childbirth and cesarean section also intersect with structures of class, race, and age. By unpacking risk in professional, mostly medical, discourses, researchers can uncover how risk is performed together with gender, class, and ethnicity.
4.1
Elective Cesarean Sections in Brazil and Sweden
The choice of countries is based on contrast and difference in living conditions and does not aim to compare countries for explanatory reasons but to reach a better understanding of how risk is articulated in different contexts. As mentioned, Brazil and Sweden differ in several ways, and in particular with respect to the number of cesarean sections, but also regarding welfare and economic resources; Brazil stands out when it comes to the frequency of cesarean sections. For example, in Salvador City, between 70% and 99% of all childbirths in private clinics are cesarean sections (McCallum 2005). Sweden, on the other hand, stands out as having relatively few cesarean sections compared to other countries in the Global North. Brazil, although constitutionally given universal rights to healthcare, still experience great challenges because of the legacies of the previous discriminatory healthcare system and,
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instead, has had a strong expansion of private social services (Muzaka 2007). Sweden, meanwhile, has a history of universal healthcare and prenatal care that reaches almost all pregnant women, while private alternatives, particularly maternity care, are less common. Therefore, in Sweden, it is not possible for a pregnant woman to “choose” (In line with McCallum (2005), we would like to stress that “choice” should not be understood as an individual decision, but rather as a result of a host of different social reasons and combinations of norms, local as well as global.) to have an ECS, and extreme fear of childbirth is the only “non-medical” reason for a planned cesarean section (Karlström et al. 2011). Meanwhile, in Brazil, private clinics make this choice possible (at least if you have the financial means). Hence, reading publications about ECSs through the lens of intersectional risk theory means determining which meanings are ascribed to which situations, actors, and actions, and decoding the discourses that legitimize particular actions—actions that can have different consequences for different actors. To chart the risk discourses of ECSs, a literature search was performed. In order to identify relevant publications, the search tool Primo ® was used to do a general, full-text search with the terms “maternal request elective AND caesarean OR cesarean AND section AND Brazil OR Sweden.” The search yielded 54 publications in English tagged with “Brazil,” and 58 tagged with “Sweden.” To decide whether a publication should be included in the review, all the publications were then read in detail, whereupon irrelevant publications were excluded, either because ECS was not their main focus or because they had a very narrow medical focus. As a result, 41 publications, 21 on Brazil and 20 on Sweden, were selected for further analysis. The publications were drawn from journals such as Birth, Midwifery, Journal of Midwifery & Women’s Health, RCM Midwives Journal, American Journal of Obstetrics & Gynecology, BMC Pregnancy & Childbirth, and The Lancet. An analysis with its point of departure in IRT can be seen as a discursive reading of the texts to capture the processes that define and produce what is considered “natural” or right while creating inequalities (Giritli Nygren et al. 2020). The “language of risk” can then be explored as a discursive imperative, based on related values and beliefs. Close and careful readings of what is taken for granted can, in this way, reveal underlying assumptions, and the implications of these assumptions can then be discussed in terms of the discourses and discursive practices that reproduce and/or challenge these assumptions (Giritli Nygren 2019). Therefore, the close reading of the publications aimed at tracing and uncovering discourses and, through that, examining what was understood or taken for granted in the articles. Tracing discourses and uncovering the “doings” of risk is about deciphering how ECS, and health more generally, is anchored in societal discourses. This is a kind of discourse analysis used to disentangle how risk is intertwined with the processes by which class, gender, and race are constructed in a process in which risk discourses can be mobilized and used to uphold other formations (Giritli Nygren 2019). In this analysis, texts or statements are considered part of other discourses and contexts, not isolated statements.
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4.1.1 Context-Specific Discourses in Brazil and Sweden Discussions of women’s rights and ability to choose to have a cesarean section take place in both Brazil and Sweden; however, these discussions reflect different discourses. In Brazil, women’s agency is routinely questioned, and instead, it is the role of the institutions (public and private clinics) and professions (obstetricians in particular), and the socioeconomic position of the pregnant woman, her class, gender, or market relations, that are in the foreground. Hence, gender, class, institutional context, and the market are entangled and support particular subject positions. Although the same discourses exist in Sweden, they are overshadowed by the discourses of individualization, professionalization, and fear, which hold a dread of childbirth being a treatable condition that can and should be managed to minimize the “risk” of having an ECS. However, even though the focus is on the woman, she is seen more as an embodiment of risk, waiting to be broken down into risk factors— age, origin, illnesses, and previous pregnancies—and then diagnosed and treated.
4.2
Docile Birthing Bodies and Utilitarian Obstetricians: Brazil
A few examples of the titles of journal articles from Brazil will suffice to illustrate the empirical material. Thus, we have titles such as “Caesarean section rates skyrocket in Brazil. Many women are opting for caesareans in the belief that it is a practical solution” (Finger 2003). Much of the focus is on the increase itself, and the risks related to ECSs; another title goes, “Women’s Autonomy and Scheduled Caesarean Section in Brazil: A Cautionary Tale” (Potter et al. 2008), which unsurprisingly is about women, but more specifically is about women’s autonomy, here framed as a warning example: Women’s autonomy has led to an increase in ECSs, which is generally framed as risky. The last title—“Are Brazilian women really choosing to deliver by caesarean?” (Hopkins 2000)—is also concerned with female autonomy, but questions it from another perspective. Needless to say, the hidden assumption is that women actually prefer “natural” childbirth, and it is physicians who convince women to have ECSs: Women cannot choose for themselves and would not want a technical or medical intervention into their knowing childbearing body. Physicians, on the other hand, represent a technological intervention in the female body, and who, not only because of their skills but also for convenience’s sake, convince the inferior childbearing woman to have a cesarean section. As one study has it, “Private doctors know that quick caesarean sections are less likely to interfere with their workload or leisure time than spending several hours in hospital for a vaginal delivery” (Victora and Barros 2006, p. 1797). The risks associated with ECSs are taken for granted, and the articles studying the Brazilian context raise the question of whether women do indeed choose to have ECSs. Although there are examples where women are framed as consumers, in line with a neoliberal discourse of rational actors designing their own life course, the standard argument is that women are in the hands of their obstetricians, who persuade their patients to have scheduled ECSs. In the selected articles, answers are sought, not from the women having the babies, but from the institutions and
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professionals who support mothers during delivery. Women have little with which to come back at obstetricians, them being such authorities, and it is the type of institution—public or private—that determines the medical choices made: Private clinics perform far more ECSs than public hospitals. It is argued that private clinics advocate ECSs because of the convenience of being able to plan and organize deliveries, and in the long run to maximize profits. Public hospitals, meanwhile, are viewed as offering inadequate healthcare and treating women poorly during delivery. As a consequence, an ECS is a way to receive better treatment and is a status symbol too, since only the well-off can afford to do the surgery. In the articles, there are indications of the less wealthy trying to challenge the system and develop strategies to manage the substandard conditions in public hospitals, one of which includes getting an ECS: Women who did not have the money to pay for a caesarean section resorted to indirect methods, such as going to the hospital early in labour to pressure the on-call obstetrician for interventions, seeking an obstetrician who was known to perform caesarean sections [. . .] attending hospital outpatient care rather than local facilities to increase the chances of getting to know obstetricians [. . .] and paying the on-call obstetrician half price for a caesarean section. (Béhague 2002, p. 4)
There is some discussion in the articles about women being selfish because of their wish for a more convenient and planned birth that would not affect their bodies as much, and particularly the belly and genitals—“mothers have been taught that caesarean sections are harmless, painless, and convenient” (Victora and Barros 2006, p. 1797). However, most of the time, in the texts, women lack agency, and the high rates of ECSs are explained away as reflecting institutional, or rather caregivers’, concerns, and different institutions having become symbols of status. Women have obviously developed strategies to navigate an inequitable system and may prefer surgical procedures to get better care. Hence, risk, gender, class, and institutional logic intersect in the risk discourse about the rising number of ECSs. However, the risk is done differently when the less affluent are included in the analyses, for then an ECS is the less well-off woman’s risk management strategy of choice to avoid poor medical care in public hospitals. In this discourse, the ECS can be said to symbolize high status and is, therefore, desirable in itself.
4.3
Terrified Subjects and Knowledgeable Midwives: Sweden
Once again, the titles of some of the selected articles provide a good indication of the material. As in the Brazilian case, in Sweden, women’s will and decisions are questioned, and it is assumed that women will always prefer a vaginal birth unless there is a medical reason for a caesarean section: “Behind the myth—Few women prefer caesarean section in the absence of medical or obstetrical factors” (Karlström et al. 2011). However, in Sweden, the risk discourse is occupied with questions about women’s fear of giving birth: “Fear of childbirth and risk of caesarean delivery”
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(Ryding et al. 2015). It might seem redundant to differentiate between a risk discourse and fear, but it is not a discourse about fear as such; rather, it is the risk that such fear will lead to an ECS. Almost half of the Swedish studies analyzed concentrate on the fear of giving birth. Interestingly, few comment on the fact that in Sweden, women are not allowed to “choose” to have a cesarean section for non-medical reasons—only for extreme fear of childbirth. The selected studies deal mainly with the association of fear with cesarean sections (both emergency and elective), and the risk in question is the increased likelihood of requesting the operation. It is not only that the authors take it for granted that women, and indeed all parents, will always prioritize the safety of the unborn child over everything else (regardless of the magnitude or probability of the risk in question), but it is also assumed, sometimes backed up with previous studies of caesarean sections in general, that a vaginal birth is identical to a positive birth experience (Eriksson et al. 2006). As one article puts it, “To provide a frightened woman with adequate strategies might make it feasible for that woman to consider a vaginal birth instead of a caesarean and may increase the condition for a positive childbirth experience” (Salomonsson et al. 2013, p. 200). Norms about childbearing age are strong, and there is a sense that the aging female body runs the risk of not managing birth giving and thus would need to deliver by cesarean section. Other possible reasons why requests for cesarean sections increase with age—higher education and greater self-confidence in dealing with the medical profession, for example—are not discussed. Instead of setting out to understand mothers’ fear of childbirth, or what it might stand for, “risk groups” who are “at risk” of having an ECS are identified. By identifying “at risk” women, they can be targeted with specific interventions to help manage their fear and increase their chances of vaginal delivery: Information and counselling should be frequent and comprehensive when a discussion of caesarean section is initiated by a pregnant woman. A woman’s first birthing experience is of vital importance for her future attitude towards mode of birth and should be a guiding principle for caregivers in intrapartum care. (Karlström et al. 2011, p. 626)
In this search for supposed risk groups, public records are used to single out sociocultural determinants that can direct medical interventions and inform further studies. Two determinants are particularly prominent in the selected literature: relatively high age and foreign origin. By framing women who meet these definitions as “at risk” or belonging to “risk groups,” underlying assumptions about birth, gender, age, ethnicity, or origin are clumped together and disguised under the name of “risk.” Hence, risk is done at the intersection of gender, age, ethnicity, and cesarean section. The rising cesarean section rates in Sweden are not ascribed to social class or the institutional setting (whether public or private), as they are in the Brazilian articles, but rather to individual women’s fears. There are similarities in the way women’s “real” preferences are questioned, thereby depriving them of agency and explaining away their interest in ECSs by pointing to their surroundings, obstetricians, and
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partners. Here, it revealed (in Brazil) complex patterns of gender, the medical profession, and social class and (in Sweden) gender, age, and ethnicity. Since the discourse in Brazil centers on the institutional level, the expected responses come in the shape of policy measures designed to counteract the development by which every other woman gives birth by cesarean section. In Sweden, the measures to reverse the rise in the number of cesarean sections and to reduce the risk are directed at pregnant women identified as being “at risk.”
4.4
Natural Birth
In addition to the medical risk discourse, there is a second discourse lurking behind. In all the articles selected for analysis, there is often an idea, whether explicit or implicit, that women prefer vaginal birth since it is “natural.” Thus, vaginal birth is part of a naturalness discourse, just as cesarean sections are part of a wider risk discourse. Similar to the “natural birth movement” in the 1970s, which argued that medical intervention in pregnancy and childbirth is disempowering and devalues women’s abilities and experiences (Johnson 2008), giving birth vaginally is understood as natural and the opposite of the cesarean section, which is a medical intervention into the female body. It is not only birth itself that is framed in terms of naturalness, but also a number of steps in the delivery process, despite the fact that vaginal birth too has its medical and technical procedures, and even full-out interventions. Although “natural birth” is used to describe vaginal birth, it is often written in scare quotes. The medicalization of vaginal birth is not problematized; the two modes of delivery are often assumed to be diametric opposites, with vaginal birth being natural and cesarean section being the modern technological mode of delivery. Hence, the discourse of natural vaginal birth is supported by the medical risk discourse by which ECSs are “done” as a gendered, classed, aged, and racialized risk. It is often in the design of the survey questions and other investigations of preferences and attitudes that the connection is most explicit. In the publications examined here, it is common to ask informants to rank the extent to which caesarean sections and vaginal birth can be considered “natural” (e.g., Bettiol et al. 2002). It is intriguing that in both Brazil and Sweden, so different in many respects and not least in terms of the frequency of ECS procedures, the notion persists that women do not really want to have cesarean sections, indicating that this particular medical intervention is different from, say, the use of painkillers to ease a headache. This hegemonic idea about the human relationship with nature and what is natural has deep roots in medicine; as early as the mid-nineteenth century, physicians and surgeons used similar arguments when weighing the benefits and risks of surgical anesthesia, using the “calculus of suffering.” There were strong beliefs about the chain of feeling—that all sensation is natural and, therefore, an important part of the body’s healing process, or, as one anonymous physician said at the time, “The greater the pain, the greater must be our confidence in the power and energy of life” (Pernick 1985). The discourse that holds that the body can and should perform
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in a natural way is one that is foisted on the female body in particular, and arguments about pain reduction and control tend to be reduced to convenience and self-interest. As a consequence, risk works to regulate and moralize the practice of ECS in the articles in question, largely by installing “natural birth” as desirable and identifying “risk groups.” Social and gender norms related to childbirth are more tuned with expert discourses (i.e., ECS is risky) in Sweden than in Brazil. Vaginal birth is taken to be natural, and not only is it the antithesis of risk, but it also constitutes what it is to be a “genuine” woman (cf. Giritli Nygren et al. 2020). Thus, to be “at risk” opens up for governance and control of pregnant women: The issue of who will be positioned as at risk is bound up with structures of inequality in specific contexts. In Brazil, the woman at risk is the rich, middle-class woman who “chooses” to deliver her child by caesarean section at a private clinic, a subject position where the woman is subordinated and dependent on medical experts (see Järvinen 2012). In Sweden, the woman at risk is the older or foreign woman who dreads natural childbirth, and thus, cannot be considered a genuine woman, a subject position where the woman also can be seen as responsible and, therefore, blameworthy (see Layne 2003). Furthermore, a woman asking for ECS is pathologized and is subject to interventions and treatments. Hence, Swedish women who seek control of their own bodies and childbirth (Johnson 2008) can be seen as resisting the norm of natural childbirth, just as a refusal to have ECS can be seen as resistance in Brazil. This does not contradict previous feminist research, but rather shows that resistance and enhancing control are entangled with context-dependent norms about childbirth, gender, and class, as well as the organization and quality of the healthcare system. Risk works in this process as an enabler for governing women, particularly women who do not adhere to these norms.
5
Conclusion and Future Direction
This chapter has introduced IRT (Giritli Nygren et al. 2020) as an analytical and methodological toolbox for studies of global public health issues, followed by an exemplifying analysis of expert discourses about ECSs. Thus, the example above shows how IRT can illuminate how risk is a normative power that constitutes hegemonic structures in and throughout global public health. Specifically, risk is constituted and (re)produced in hierarchical relations of power, such as gender, ethnicity, class, sexuality, and so on, and their intersections. We argue that intersectional risk theory can change our understanding of how power structures are entangled with risk and how, together, both mutually constitute health inequalities. This theoretical understanding of global public health acknowledges the fluidity and complexity of current individualized and globalized societies without hiding the intersecting hegemonic structures of power. The analysis showed that the language of risk is used in both Brazil and Sweden, just as the naturalness discourse is associated with vaginal delivery in both contexts. Hence, in expert discourses, ECS is equal to risk regardless of context, but the social
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norms about childbirth differ; in Brazil, where the lack of adequate public maternity care makes private options desirable, and therewith ECS. This has created an intricate interaction between social class, or status, gender, and risk, where articulations of risk position women in a vulnerable situation. Even the discussion about choice in Brazil tends to give authority to obstetricians and private clinics, rather than to women themselves. It is as if being at risk overrides the social position these women have, and leaves them as vulnerable in the hands of obstetricians. We contend that the IRT raises important methodological questions, especially in relation to the possibility of utilizing categories, frequencies, and other such functions for quantitative analysis. Perhaps the most obvious and difficult challenge of quantitative intersectional analysis is that the core attributes of intersectional analyses, such as multidimensionality, mutually constitutive relationships, and interdependence, contradict the positivist assumptions inherent in most quantitative approaches and statistical analyses. Based on the discussion so far, it is clear that intersectional risk analyses can also be conducted quantitatively. Theoretically, it is in line with relational-centered intersectionality studies mentioned earlier in this chapter, thus focusing on intercategorical complexity (McCall 2005). This approach accepts categorization, for example, of genders and investigates the relationships between categories, social groups, or intersectional risk regimes, but more exploratory quantitative studies are also needed (Öhman and Olofsson 2019). Such relational quantitative approaches to intersectional analysis facilitate the exploration of global public health inequalities and positions of privilege across populations and at particular times. They also contribute to ontological and epistemological perspectives on intersectionality. These analyses not only illuminate the hegemonic structures of power that create subordinated and privileged positions, but also help us to theorize the non-linear and stochastic relations between and within these positions. This methodological advance also has important implications for global public health policy.
6
Cross-References
▶ Childbirth and Birth Care ▶ Critical Theory ▶ Gender Theory and Global Public Health ▶ Intersectionality and Global Public Health
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Decolonial Methodology in Social Scientific Studies of Global Public Health Assata Zerai, Anniah Mupawose, and Sharon Moonsamy
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Logics that Give Rise to Decolonizing Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Power, Privilege, and Decoloniality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Relevance of Power, Privilege, and Coloniality to the Study of Communication Disorders . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Epistemological Differences to Distinguish Between Mainstream and Decolonial Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Relevance of Critical Disability Studies to Decolonial Methodology . . . . . . . . . . . . . . . 3 Examples of and Guidelines for Decolonial Research Methodologies in Social Sciences Studies of Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Guidelines to Consider . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Examples: Decolonial Methodology in Action-Qualitative Approaches . . . . . . . . . . . . 3.3 Recommendations: Decolonial Methodology in Action-Quantitative Approaches and Reference Practices That Reflect Decolonial Methodology . . . . . . . . . . . . . . . . . . . . . 4 Ethical Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion: Social Justice as Inspiration for Using Decolonial Feminist Methodologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
In the context of scholarly studies of global public health, the relevance of concepts such as power, privilege, and decoloniality stems from a fundamental understanding that health outcomes do not solely derive from individual choices and behavior. Global health must be understood not solely as emanating from A. Zerai (*) University of New Mexico, Albuquerque, NM, USA e-mail: [email protected] A. Mupawose · S. Moonsamy University of the Witwatersrand, Johannesburg, South Africa e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_43
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biological conditions or an individual’s or their family’s choices. They must be understood in terms of broader distal factors-macroeconomic, political, and social factors, including policies and practices at the local and national levels that promote equity in health, for example. Furthermore, the conditions shaping such distal factors in global contexts include the broader landscape of the world market economy. And the context for families in South Africa, for example, is one conditioned by decades of inequitable access to healthcare, gainful employment, and other resources that contribute to the high rates of communication disorders, especially within Black communities today. Central to studies of decoloniality are notions of power, privilege, and coloniality. In the Global South, colonial legacies still set the stage for health inequities. For example, apartheid in South Africa meant that Black South Africans were economically, socially, and politically disadvantaged. And while South Africa earned independence in 1994, after which democratic elections ensued, almost 30 years later, South Africa is still a country with inequitable access to education, employment, and healthcare, which shows up in poor health outcomes and a higher incidence of disability among Black populations relative to white populations. The COVID-19 pandemic has only exacerbated these conditions of displacement. This chapter discusses ways in which the authors have decolonized feminist methodology in social scientific studies of health in global contexts (especially countries in East and Southern Africa) and provide examples of the strength of methodologies designed to unveil the manifestation of state actions in everyday life, and ways in which decolonial feminist methods (DFM) broaden understandings of global health (e.g., by (a) deploying an interpretive decolonial feminist epistemology, (b) utilizing citation practices that center local women and nonbinary scholars, (c) conducting culturally sensitive and sustaining research within local communities, and (d) resisting and expanding traditional disciplinary canons by teaching DFM), to create possibilities for responding to and challenging state actions and inactions affecting health and disabilities among minoritized groups in local settings. Keywords
Decoloniality · Feminist methodology · Culturally relevant pedagogy · Decolonial feminist methods · Citational justice · Ethical consideration for engaging Vulnerable and Indigenous Populations (VIPs)
1
Introduction
Research, knowledge production, and knowledge dissemination are highly prioritized in the lives of academics, who need to “publish or perish,” in the context of academia. However, are researchers approaching their research with authenticity and ethically sound and context-appropriate ways of doing, or are they applying only
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what they have been taught to do through the colonized education they received so that their publications are accepted in international sources? Furthermore, are their teachings transformed to reflect the decolonized research they conduct so that cultural sensitivity is entrenched in their students, or is their teaching divorced from their research methods? As health professions, many struggle against mainstream trends, which assess research skills through the perspectives of a western lens. They are aware of the impact of “belittling anything that is not western,” where they were taught to believe that anything other than a “western practice” is less than or not good enough. However, they are aware but do not act to challenge these mainstream research practices; they are displaying a “colonized mindset” that rejects the self, their languages, and their cultures, especially within their contexts in the Global South and as members of marginalized communities. Decolonizing the mind is not an easy process given the embeddedness of this state in the make-up of both the “colonizer” and “colonized.” However, embracing and appreciating who individuals are is an act of resistance against the “colonial mentality.” They need to interrogate from where their biases, preferences, and thoughts are derived. Therefore, recognizing the “colonized mind” is the first step in working toward a “decolonized state of being.” This is an intentional act. Moving from their awareness to action is what the authors are arguing for in this chapter. Decolonizing methods in research can be one avenue that provides a space to debate and engage the thinking of all, especially within helping professions, and it is a vital precursor to transforming the curriculum. Western knowledge traditions have become the norm for all knowledge. The methodologies underlying these traditions are seen as the only forms of true knowledge, which has led to a reduction in epistemic diversity (Rabaka 2010). Because of the institutional and epistemic power that western traditions hold, they constitute the center of knowledge so that other forms of knowledge are marginalized, or discounted (Mbembe 2015, as cited by Held 2019). We argue that in transforming the curriculum, we are decolonizing the curriculum. When we decolonize the curriculum, we are concertedly working toward co-creating a knowledge system that values and respects the Indigenous knowledge of the communities we work with. A decolonized curriculum trains and graduates helping professionals who practice and conduct research in a “decolonized” manner that values community, spirituality, (spirituality, as captured within ubuntu ontologies, indicates community morality, values, and ethics, which regulate individual behavior in relation to the collective. As noted by Bishop Desmond Tutu, “Ubuntu. . . is to say, ‘my humanity is caught up, is inextricably bound up, in what is yours’”, 1999) emotions, and embodiment of individuals. Working through an authentic framework will draw on collaborative partnerships between the researcher and the participant. Each has their own expertise that can create the solutions to challenges individuals experience in communities and will lead to more nuanced outcomes, especially health, education, and social outcomes for vulnerable and Indigenous people (Keikelame and Swartz 2019).
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2
Logics that Give Rise to Decolonizing Methodology
2.1
Power, Privilege, and Decoloniality
In the context of the social sciences and scholarly studies of global public health, the relevance of concepts such as power, privilege, and decoloniality emanates from a fundamental understanding that health outcomes do not solely derive from individual choices and behavior. Therefore, this discussion begins with an examination of the primacy of perspectives that concentrate on proximate determinants of health, why this is a shortcoming, and the importance of recognizing “the social” in an understanding of health outcomes. Studies of communication disorders (CD) are an excellent example. Most studies of communication disorders posit that the incidence of CD can be explained by proximate biological and behavioral factors. For example, Healthline, a popular online resource for health information, indicates: “some causes of communication problems include hearing loss, neurological disorders, brain injury, vocal cord injury, autism, intellectual disability, drug abuse, physical impairments such as cleft lip or palate, emotional or psychiatric disorders, and developmental disorders” (Giorgi 2019) (medically reviewed by George Krucik, MD, MBA, written by Anna Giorgi, updated on November 4, 2019. https://www.healthline.com/health/communication-skillsand-disorders). Most, if not all, allied health professions have traditionally focused on disorder versus development. The shortcoming is the deficit focus of this perspective. The interaction of helping professionals has been to extract information from communities to identify problems, dysfunctions, and disorders in communities. The aim of extracting information or identifying communication disorders has been the specific aim of providing interventions or solutions based on discipline knowledge, which has its origin in Western ideology (Held 2019). There has been little to no acknowledgment of Indigenous knowledge or values. As helping professionals, individuals need to recognize that their discipline knowledge is not neutral (Strathern 2004) and that the Indigenous communities have been dealing with community members who are “different” or suffering from an ailment before the white settlers colonized the land. Their approach to conducting research with Indigenous communities needs to “bottom up” – where they co-create research methods that innovate how researchers work with Indigenous communities. Their research methods should not be about extracting and exploiting but uplifting and adding value. Another shortcoming of the deficit/dysfunction perspective is that causes of disorders, impairments, and conditions are discussed in a vacuum. Girogi’s explanation of causes of communication disorders as noted above does not include intermediate socioeconomic circumstances, patients’ access to providers, and possible relevant cultural exigencies, nor does she address distal macroeconomic, political, and social factors that may contribute to the causes of CD. Models that
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consider the social determinants of health place proximate determinants in context. An example of the social determinants of health model is depicted below (modified from Zerai 1994; 2014). Macroeconomic, political and social factors
Community conditions and individual-level socioeconomic variables
Proximate biological and behavioral factors leading to communication disorders
Health~disability outcomes
Communication disorders must be understood not solely as emanating from biological conditions or an individual’s or their family’s choices. They must be understood in terms of broader macroeconomic, political, and social factors, including policies and practices at the local and national levels that promote equity in health, for example. Social determinants of health serve as predictors of the burden of diseases of a country. The disease burdens of the Global South include but are not limited to the following areas: (i) communicable diseases (HIV, TB, sepsis); (ii) noncommunicable diseases (cancers, diabetes, cardiovascular disease); (iii) injury, crime, and violence (including gender-based violence, xenophobia); (iv) mental health (including depression, para-suicide, risk behavior, harmful substance use); and (v) maternal and child health (morbidity and mortality); including hypertensive disorders, pre-eclampsia, infectious disease in pregnancy, obstetric hemorrhage, and motherto-child transmission of HIV. It could also be argued that these same disease burdens are prevalent in the North Atlantic (e.g., U.S., Canada, U.K., and E.U.) among migrants, racial minorities, and other marginalized groups. Due to geopolitical forces, Wong et al. (2021), in their study, have observed a convergence of infectious and noncommunicable disease epidemics in the Global South countries, instead of the classic epidemiological transition in which countries shift from predominantly infectious to predominantly noncommunicable diseases over time. The burden of disease in the Global South is mainly due to the legacies of colonialism and the lack of political will of governments. Researchers should not ignore the interface between social determinants of health and the burden of disease in how they conduct research.
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Health conditions and disability do not occur in a vacuum but in a context influenced by western ideology and hegemony. Furthermore, the conditions shaping macroeconomic, political, and social factors in global contexts include the broader landscape of the world market economy. And the context for families in South Africa, for example, is one conditioned by decades of inequitable access to healthcare, gainful employment, and other resources that contribute to the high rates of communication disorders, especially within Black communities (following conventions articulated by Mabokela and Mawila (2004), in the context of this chapter, “African refers to people of Indigenous ancestry. Colored refers to South Africans of mixed heritage, usually with Dutch, African, Malay, or Khoisan heritage. Indian refers to people of Indian descent and white refers to South Africans of European descent. The term Black is used to refer collectively to Africans, [mixed race individuals], and Indians. It is a term that emerged during the Black Consciousness era of 1970s to refer to the ‘oppressed’ peoples of South Africa” (Mabokela and Mawila 2004, p. 396) in South Africa today. Central to studies of decoloniality are notions of power, privilege, and coloniality. In multiple countries in the Global South, colonial legacies still set the stage for health inequities today. For example, apartheid in South Africa meant that Black South Africans were economically, socially, and politically disadvantaged. And this contributed to the limited ability to compete in the world market. White Afrikaners buffered their own economic crises and volatility by burdening Black South Africans with working in dangerous conditions, often requiring family separations; by claiming ownership of their land; by limiting access to healthcare and education; through violence; importantly through political disenfranchisement; and through other means. While South Africa earned independence in 1994, after which democratic elections ensued, almost 30 years later, South Africa is still a country with inequitable access to education, employment, and healthcare, which shows up in poor health outcomes and a higher incidence of disability among Black populations relative to white populations. In writing about the postcolonial state, Walter Rodney (1972) describes the politics of retrogression, which is still apt today. He notes that this is typified by the following: • • • • • •
Concentration of power in the hands of the petite bourgeoisie Destruction of popular participation and expression Manipulation of race, ethnicity, religious differences, and other divisions Institutionalization of corruption Vulgarization of “national culture” as an element of class rule Deliberate distortion of revolutionary concepts
Social justice advocates, scholar-activists, and health activists have exercised their agency to critically examine the postcolonial state. Michel Foucault (1998, p. 63) argues that “power is everywhere” and “comes from everywhere,” so in this sense, it is neither an agency nor a structure. Instead, it is a kind of “metapower” or “regime of truth” that pervades society and that is in constant flux and negotiation. Foucault uses the term “power/knowledge” to signify that power is constituted through accepted forms of knowledge, scientific understanding, and “truth.” Radha
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Hegde (1996) draws from Foucault in her work and agrees that understanding power/powerlessness as a binary is not as useful a construct as the notion of power as a relational entity that is diverse and dynamic. Accordingly, “power, according to Foucault, is something that circulates” (Hegde 1996, p. 311). The coloniality of power is a concept interrelating the practices and legacies of European colonialism in social orders and forms of knowledge, advanced in postcolonial studies, decoloniality, and Latin American subaltern studies, most prominently by Anibal Quijano (2000). This work posits that the power created by European colonialism, including settler colonialism, still exerts a significant influence both on world affairs, geopolitics, and economic advance (at the macro-level) and on the day-to-day lives of both individuals who enjoy privilege (unearned advantages) and those who do not. Walter Mignolo (2007) describes the way in which the concepts of modernity and coloniality are inseparable – two sides of the same coin. The “modern” world in the West is not simply a result of really smart people who have created various technological advances. The modern world was built and resourced by subjugated peoples: Blacks who were taken from the African continent and forced to work in the Americas, Blacks living on the African continent whose land and labor were appropriated, and many others – Black, Brown, poor, working class, immigrants, women, children, queer, trans, and persons with disabilities, for example, who have not had equitable access to resources, largely produced by classes of individuals who have not enjoyed the fruits of their labor. “Privilege” refers to certain social advantages, benefits, or degrees of prestige and respect that an individual has by virtue of belonging to certain social identity groups. “Privileges” in the context of discussions within decoloniality are largely unearned advantages. In the US context, for example, Black and Indigenous students, especially men, are underrepresented in universities. And white and Asian students are overrepresented. They are buttressed by privilege in a number of ways: by (a) standardized tests that are biased toward the white middle and upper-class culture and values; (b) research has shown that standardized tests measure students’ knowledge about how to take tests and that they are not predictive of university-level academic success in many disciplines; (c) the majority of teachers in the USA are white and they, by and large, do not know how to teach in culturally responsive and sustaining ways that reach Black and Indigenous students; (d) implicit bias has a measurable impact on Black, Latino, and Indigenous students’ access to educational resources and assessments of their progress; and (e) research has shown that discrimination and racial and intersectional microaggressions create hostile educational environments for Black, Latino, Indigenous, LGBTQIA, women, and students who are persons with disabilities. White students enjoy higher educational achievement relative to Black, Latino, and Indigenous students; this unearned advantage is baked into educational institutions and often left uninterrogated. Furthermore, rather than challenging the privilege of some students and inequity faced by other students, conventional wisdom accepts that Black, Latino, and Indigenous students are simply not academically prepared relative to white students. The result of the system of inequality is taken as a fact of relative inherent intelligence. Moving to the Global South, and the context of higher education in South Africa, Uganda, and Zimbabwe, colonial and/or settler colonial legacies led to the exclusion of Black Africans from higher education (Mabokela and Mawila 2004; Mabokela
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and Mlambo 2015). According to Mabokela and Mawila (2004, pp. 396–397), “prior to 1994, the law did not protect Black South Africans. Literature from all three countries describes secondary marginalization. Apartheid, for example was also used to curb the participation of women, in particular Black women, in various aspects of life, and it effectively relegated them to second-class citizenship status.” They also suggest that “in 1993 women occupied 32% of the total research and teaching positions; at some historically white South African universities, women comprised 100% of the positions below junior lecturer rank, 89% of the junior lecturers, and 45% of the lecturers. . . . (Conversely) women comprised less than 3% of professors and about 8% of associate professors” (Mabokela and Mawila 2004, p. 397). Women, especially women of color, were underrepresented as undergrad students, postgrad students, trainees, postdocs, and faculty and administrators. Intersectionalities are relevant, so women from less dominant ethnic groups experience fewer privileges and less access to education, especially higher education, relative to more dominant ethnic groups. Given the underrepresentation of Blacks, all women, and Black women in higher education, and given their collective lack of power, that which is considered legitimate knowledge production in South Africa, in the broader Global South, and in the westernized university still rests on westernized academic canons. Decoloniality rightly criticizes academia as upholding western thought almost exclusively, specifically the theories and methods of “white men from five countries.” Ramón Grosfoguel (2013, p. 74) explains this conjecture thusly: How is it possible that the canon of thought in all the disciplines of the Social Sciences and Humanities in the Westernized university . . . is based on the knowledge produced by a few men from five countries in Western Europe (Italy, France, England, Germany, and the USA)? How is it possible that men from these five countries achieved such an epistemic privilege to the point that their knowledge today is considered superior over the knowledge of the rest of the world? How did they come to monopolize the authority of [this]? Why is it that what we know today as social, historical, philosophical, or critical theory is based on the sociohistorical experience and world views of men from these five countries? . . . If theory emerges from the conceptualization based on the social/historical experiences . . . of (only) particular spaces and bodies, then social scientific theories . . . limited to the experience and world view of only five countries in the world are, to say the least, provincial.
Fundamentally, decoloniality is about Black and other marginalized women, nonbinary folks, and men exercising their agency. Amina Mama (1998, p. 1) argues that “power is ‘always already there’; one is never ‘outside’ it. . . . This does not entail the necessity of accepting an inescapable form of domination or an absolute privilege on the side of the law. To say that one can never be ‘outside’ power does not mean that one is trapped and condemned to defeat no matter what.” Amina Mama articulates African feminism as an important decolonial intervention well in her editorial of the inaugural issue of Feminist Africa (2002, p. 1): African gender politics have become increasingly complex & contradictory. Feminism, as a movement that is both global and local leaves little untouched. In postcolonial contexts it presents a praxis that directly opposes the hegemonic interests of multinational corporations,
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international financial and development agencies and nation states as well as the persisting male domination of disparate traditional structures, civil society formations and social movements. In African contexts, feminism has emerged out of women’s deep engagement with and commitment to national liberation, (so it is hardly surprising that African women’s movements today feature in the different struggles and social movements characterizing postcolonial life). African women are mobilizing at local, regional and international levels, & deploying various strategies and forms. Little wonder that they display gender politics ranging from the radically subversive to the unashamedly conservative. Gender politics in postcolonial Africa are deeply contested within and beyond the minority who might name themselves as feminists.
Decolonial thinking is a particular type of critical thinking. It challenges and calls out the crazy-making consequences that result from the impact of predatory globalization on local settings – where external interests determine day-to-day operations of higher education in African countries, not for the good of students, faculty, or staff in those settings but in ways that privilege the economic, intellectual, and political interests of powerful supranational and north Atlantic institutions. Global Black feminist thinking, a part of decolonial feminisms, offers frameworks that directly challenge neocolonial and neoliberal institutions that actively seek to dehumanize all women, specifically Black women, and whose “unintended” effects produce and reproduce dehumanization. Decolonial feminist thinking is a woman-centered perspective that creates a safe space for women to occupy on their own terms in male-dominated social structures. It is the study of the languages, discourses, problematics, unique perspectives, divergent experiences, and intersecting oppressions and privileges of women’s and girls’ lives. It promotes the desire to study African women and children from liberating and not oppressive perspectives. Inspired by Africana transnational feminist praxis, the exciting body of literature in the field broadly characterized as African feminism has identified a perspective, a gendered lens, for myriad purposes. It has helped to legitimate the problematic, languages, discourses, unique perspectives, divergent experiences, and intersecting oppressions and privileges of women’s and girls’ lives. Many are inspired to pursue this line of inquiry because they want to study global health from liberating and not oppressive perspectives. As Audre Lorde said, “the master’s tools will never dismantle the master’s house” (1984, p. 114).
2.2
Relevance of Power, Privilege, and Coloniality to the Study of Communication Disorders
Ramugondo (2000, 2015) points to the need for institutional reflexivity and “occupational consciousness” and for Black scholars and practitioners to reconceptualize their roles in all aspects of the helping professions, including training protocols, academic teaching, research praxis, and person-centered and culturally sensitive service/care delivery to clients, who are at the end of the day raison d’etre. Ellis and Kendall (2021) argue that racism, privilege, power, and positionality negatively impact clinical research conducted in the discipline of communication sciences and
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disorders. This chapter, therefore, proposes decolonial methodologies as vital to conducting appropriate research studies to shed light on the experiences with communication disorders among communities in the Global South, especially racialized groups. There is strong evidence for the need for decolonial methodology. The majority of faculty teaching in the field and graduate students who represent the next generation are white and from the West. A lack of diversity in researchers and practitioners results in one-sided approaches and inadequate solutions. As argued earlier, biological models and medicalization predominate; there is a reticence to include macrolevel determinants of communication disorders and to examine the impact of macroeconomic, political, and social factors (including social determinants of health). Research focuses on well-endowed communities. There is very little incorporation of culturally relevant, responsive, and sustaining approaches. The lack of participatory action research involving communities of color as partners in developing solutions means that solutions are partial at best.
2.3
Epistemological Differences to Distinguish Between Mainstream and Decolonial Methodology
Decolonial research methodologies (DRM) are tools to help individuals understand their various social worlds and work toward creating new ones. And because DRM offer tools to unveil the operation of power and privilege, they are necessary in order to study Vulnerable and Indigenous Populations [VIPs] (vulnerable and Indigenous Populations [VIPs], people, and groups include those marginalized, such as Indigenous folks, persons with disabilities (PWD), and migrants) ethically. In the context of global health, they embrace social determinants of health frameworks and examine the impact of broader social, structural, and global forces on health and disability. They are best understood by examining epistemological differences between mainstream and decolonial approaches (see Table 1). As noted in Table 1, while mainstream positivist approaches to social science studies of global health within the Westernized university are merely descriptive (and not analytic), require “objectivity” in which the researcher is distanced from the object of study, are characterized by a lack of emotions and a research process from which values are divorced, which calls upon adversarial debate to ascertain the truth, and which reproduces epistemic apartheid, this chapter proposes an alternative epistemology inspired by DFM. This alternative perspective is analytic, moving beyond a mere description of “differences” to highlighting power imbalances and relational differences – that privileged bodies in spaces enjoy unearned advantages often resulting from extracting labor or natural resources from oppressed groups. Challenging “objectivity,” this approach promotes socially engaged research, spurred by a passion to address inequities, an ethic of caring and personal accountability, and ultimately “committed objectivity” (Agozino 1999), that holds in balance both social scientific principles and commitment to the communities we serve (Uchendu 1965). DFM values insider perspectives of VIPs and embraces the
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Table 1 Epistemological differences to distinguish between mainstream and decolonial approaches Positivism, a tool of (Neo)colonialism/ (Neo)liberalism Descriptive and acknowledges variant experiences as additive: “race, class, and gender exist” – “unreflective about the nature of gender as a social category” (Stacey and Thorne 1985)
Researcher distanced from the object of study (Collins 1990) Absence of emotions (Collins 1990)
Values largely withdrawn from the research process (“value free”) (Collins 1990)
“Objectivity” is valued (etic-outsider perspectives)
Adversarial debate to ascertain truth (Collins 1990) Habitus and Western academic structures (re)produce epistemic apartheid (aided by institutional racism/sexism and conceptual quarantining of knowledge) (Rabaka 2010; West 2015; Martin and West 1999)
An alternative: interpretive, decolonial feminist approaches Analytic: points to power imbalances and relational differences: e.g., white middleclass women live the privileged lives they do because racially and culturally excluded (racially and culturally excluded communities include Black individuals within the South African and many East African contexts and Black, Indigenous, and People of Color [BIPOC – also incorporates Latinx, Asian, Pacific Islander, Multiracial, Middle East, and North Africa, and others] in US contexts and also include VIPs and queer and transgender individuals transnationally) poor and workingclass women enable them (drawing from Brown 1995; Andersen and Collins 1998) Promotes socially engaged research (Harding and Norberg 2005) Passion to address inequities (Gayles 1997, Agozino 1999): an ethic of caring and personal accountability (Collins 1990) Lived experience as a criterion for meaning (Collins 2000; Cuadraz and Uttal 1999) – emic perspective is valued (Uchendu 1965; Amadiume 1987, 1997; Zerai 2002) Committed objectivity (Agozino 1999) and emic perspectives are valued. Uchendu 1965, Amadiume 1987, and others, write both as citizens of the pan-African world who take concerns very personally and as people “of science” Humanizing speech to assess knowledge claims (Hooks and West 1991) Marginalized voices/perspectives as agents of knowledge (Collins 1990; Mama 2002); double consciousness (DuBois 1903) and outsider-within perspectives (Collins 1990) valued
Source: Zerai and Banks (2002), Zerai et al. (2016), and Zerai (2019)
responsibility to collaborate with racially and culturally excluded communities, seeing them as knowledge experts, recognizing strengths within these communities, and seeks to authentically represent all voices in research. DFM researchers contribute to the overall enterprise within our disciplines by producing research products that are recognizable to VIPs and other community partners and that contribute to a body of knowledge that we assess through humanizing speech (Hooks and West 1991),
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supportive feedback, and words of encouragement (words of encouragement are also understood as microaffirmations see Espinal 2022).
2.4
Relevance of Critical Disability Studies to Decolonial Methodology
Disability studies were constructed as a field of knowledge without any recognition or acknowledgment of the Global South experience (Meekosha 2011). This chapter argues that contemporary disability studies constitute a form of coloniality and need to be rethought including the perspectives of the Global South. Disability studies regularly assume a North Atlantic, Eurocentric universality when discussing issues of disability (Meekosha 2011; Nguyen et al. 2019). There is an understanding in disability studies that disability is a long-term physical mental and/or sensory impairment that has a substantial adverse effect on a person’s ability to carry out normal day-to-day activities. This definition does not consider the causes of the impairment, namely, the dynamics of geo-political forces such as colonialism and imperialism (Nguyen et al. 2019). Mainstream research relates disability to poverty at the expense of examining the effects of colonialism, coloniality, and neo-liberalism. Persons with disabilities (PWD) diminished social location within axes of power may result from their reduced or different forms of economic productivity. VIPs often exist within contexts in which they are demeaned, devalued, and dehumanized. In an effort to steer away from the prevailing discourses around disability, critical disability studies (CDS) recognize and seek to redress the hegemonic perspectives of disability. CDS challenge mainstream perspectives that are “deeply entrenched in forms of social order and the structure of power which seeks to govern social relations between men and women, colonizer and the colonized and between the disabled and non-disabled people and their communities” (Nguyen et al. 2019, p. 1044).
3
Examples of and Guidelines for Decolonial Research Methodologies in Social Sciences Studies of Global Health
In their work in the health and social sciences, the authors use decolonial feminist research methodologies (DFM to help them understand their various social worlds and work toward creating new ones because they offer tools to unveil the operation of power and privilege; they are necessary in order to study vulnerable and Indigenous populations ethically. The authors want to understand the social world and cannot understand it without examining every aspect of the social world, especially in disciplines such as human development. Zerai notes in her work that she came to this realization after she finished her PhD program and spoke to editors about publishing her first book. Due to the work she had previously done to develop her critical consciousness, Zerai gained the perspective that to truly study infant mortality in Zimbabwe and to authentically understand the experience of women who
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had lost their babies, she needed to adopt a point of view that centered these women, their families, and their communities. Zerai felt that she needed to understand their experiences from the perspectives of women from Zimbabwe, women from southern Africa, and other African women scholars, from an insiders’ perspective as much as possible, in order to honor their painful, poignant experiences of losing a child. As a feminist, Christian, woman of African descent and aunt of a baby who died within the first year of his life, Zerai had compassion for women who have lost their children. Further, as a sociologist, she believed she needed to cultivate a broader understanding of the structural forces leading to each baby’s death. In her studies, Zerai eschewed the view that fatal outcomes were a result of individual women’s bad choices, despite the fact that her western, individualist society of the USA constantly promotes this falsehood, that when people are successful, it is due to their hard work and good choices and when people fail, it is their own fault. This led to the development of the decolonial feminist epistemology described above.
3.1
Guidelines to Consider
Decolonial feminist research methodologies, especially when used among VIPs, are most successful when following a number of guidelines. First, it is helpful to employ research practices that are culturally responsive and sustaining as well as to approach topics and subjects of research with cultural humility. Culturally responsive teaching, also called culturally relevant teaching, is a pedagogy that recognizes the importance of including students’ cultural references in all aspects of learning. According to Cherese Childers-McKee, “It needs to build on individual and cultural experiences and their prior knowledge” (as quoted in Burnham 2020, p 1; Childers-McKee and Hytten 2015). The chapter argues that these principles can be applied as a part of decolonial research methodologies. Gloria Ladson-Billings (1995) published the landmark article “Toward a Theory of Culturally Relevant Pedagogy,” giving a coherent theoretical statement concerning pedagogies she had been building throughout the 1970s and 1980s. Adapting this theory to research may include the following: 1. Communicating high expectations that research collaborations would be mutually advantageous 2. Creating possibilities for active participation, co-creating, and learning about the research topic 3. Identifying, nurturing, and sustaining the cultural wealth, languages, and strengths of communities in which research is occurring 4. Including culturally and linguistically diverse research and communications strategies 5. Practicing cultural sensitivity 6. Cultivating a supportive research/learning environment reflecting the cultures of all prospective groups 7. Fostering small group interactions to receive input and communicate information
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Promoting culturally sustaining pedagogy (CSP) and research practices to sustain the lifeways of communities damaged and erased through schooling, research, and technology, CSP explicitly calls for schooling and research to be a site for sustaining –rather than eradicating – the cultural ways of being of communities of color (Paris 2012). In response to the concept of cultural “competence,” educational researchers have introduced the importance of balancing cultural awareness with cultural humility, the “ability to maintain an interpersonal stance that is otheroriented (or open to the other) in relation to aspects of cultural identity that are most important to the [person]” (Hook et al. 2013, p. 2). Cultural humility requires (a) a lifelong commitment to self-evaluation and self-critique; (b) commitments to fixing power imbalances; (c) development of partnerships with people and groups who advocate for others; (d) self-reflexivity concerning ways to enact these ideals within research projects. Second, efforts must be made to gain access to communities and participants responsibly and respectfully. Questions to consider follow. How do you go about gaining access to those individuals? Did you do your homework to learn a bit about them so that you can approach them with respect? Have you done the work to get to know some key informants within the group, who can ultimately vouch for you and your sincerity so that you might gain access to the group? Third, researchers are encouraged to explore ways to create a reciprocal, collaborative, and redistributive research project with the community in which they would like to conduct their research. 1. Reciprocal. You want data from the community. Think about what you can give in return. Your contribution may need to extend beyond your dissertation research. It may entail advocacy work within communities. 2. Collaborative. See community members as partners and collaborators and not just as people from whom you are extracting useful data. Think through projects alongside community members from the beginning. Do not just invite them to provide input to your fully developed plan at the eleventh hour. Take time to understand the goals of community members vis-à-vis your research. The key is asking and listening to needs, and objectives, and appreciating unique resources emanating from community collaborators. 3. Redistributive. Think about ways collaboration could burden community partners and explore ways to provide assistance. How can you disrupt power and resource imbalances by directing some of your resources back to the community that you seek to study? Fourth, ground your research in the scholarly work of intellectuals who emanate from the communities you wish to study and/or from proximate communities. Be sure to include scholars from communities of color, women scholars, and scholars who vary in terms of sexual orientation, gender identity and expression (SOGIE) and disability status. A methodology for including the works of Indigenous scholars is outlined in the Recommendations section that discusses reference practices that reflect decolonial methodology below.
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Examples: Decolonial Methodology in Action-Qualitative Approaches
3.2.1 Critical Reflection in DRM As previously discussed, cultural responsivity/humility cannot occur without critical reflection. Critical reflection, if done correctly, does not just stop and start with the person reflecting but reflection should spur the person to act (Schön 1987) toward a decolonial stance. Critical reflection “centers power explicitly, requiring (students and professionals) to consider their positionalities in systems of privilege and oppression and how those positionalities influence their thoughts and actions systems” (Gorski and Dalton 2019, p. 3). Critical reflection is a prerequisite to developing critical consciousness – a term coined by Freire (1970). According to Freire (1970), critical reflection leads to a more complete grasp of coloniality experienced by Indigenous, displaced, and marginalized populations (cited in Bartlett and Vavrus 2017). Freire further adds that understanding coloniality should not only be an intellectual endeavor, but it must lead to action. Conversely, action without critical reflection is not true activism. Helping professionals need to be reflecting “in” and “on” action (Schön 1987) to effect the co-creation of knowledge in research methods with Indigenous populations (Gorski and Dalton 2019). However, despite the crucial role that critical reflection effect on a researcher, barriers to critically reflecting have been identified. Critical reflections can become too inwardly focused and self– absorbed. Studies have also shown that it is not always easy to engage individuals in critical reflection, especially if it is undergirded by decolonial theory. Individuals do not want to sit with disruptions of frames of reference – cognitive dissonance. Critical reflection in relation to decolonial theory is about deconstructing and reconstructing factors that impact practice and research methods (Bartlett and Vavrus 2017). Individuals are not comfortable with deconstructing their social identities, because one cannot separate emotions from identity (Zembylas 2015). Social identities divulge relations of power or positionality. Bartlett and Vavrus (2017) suggest that helping professionals should not shy away because of the feelings such as guilt, anger, or self-loathing. Instead, helping professionals should develop the capacity to maintain an oppositional, decolonial, and anti-racist identity. Helping professionals in fields such as communications disorders and social work start off as students in these same academic disciplines, so it is important that the curriculum is transformed to facilitate decolonized methods for practice and research. In a study conducted by Fraser and Mupawose, speech-language pathology students were asked to describe how culturally responsive they were in practice. Students reported having an awareness of cultural differences but rarely critically reflected on their practice in terms of positionality, privilege, oppression, and marginalization. Additionally, the students reported that cultural responsiveness in lectures and clinical practice was always discussed in relation to cultural differences, never in a critically reflective manner. Students never saw critical reflection being modeled by lecturers or clinical educators. The findings were disconcerting because students eventually become researchers.
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3.2.2
Example of Valuing Indigenous Knowledge: Traditional Healers Concerning Parkinson’s Disease Western practitioners have for a protracted time not acknowledged the benefits of traditional healing practices, even though 80% of the African population consult traditional healers (WHO 2001). This is mainly due to Western practices not recognizing traditional practices as part of the management of health and disability. This was evidenced in a study where individuals with Parkinson’s consulted traditional healers. The study indicated that traditional healing practitioners (THPs) perceived THP and western practices as viewing illness and healing from different frames of reference, yet complimentary, while striving for the best treatment models of practice for the patient (Moonsamy et al. 2012). In the management of health and disability, the language and culture of the client or patient must be considered, as no aspect of the individual exists in isolation. Once democracy was established in South Africa in 1994, THPs were given a voice, and discussions on how to work in multidisciplinary teams were considered. Although best models of practice are now recognized, discussions on how to integrate THP and western medicine remain an ongoing debate.
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Recommendations: Decolonial Methodology in Action-Quantitative Approaches and Reference Practices That Reflect Decolonial Methodology
Decolonial research methods require grounding research in the scholarly work of intellectuals who emanate from the communities you wish to study, from proximate communities, and especially from the Global South. This includes paying attention to ensuring the inclusion of scholars from communities of color, women scholars, and scholars who vary in terms of sexual orientation, gender identity and expression (SOGIE) and deaf culture/persons with disability (PWD) status. A methodology offered by Zerai and her colleagues is the Database of African Women Scholars (see Zerai et al. 2016). In her current work, Zerai calls attention to African women academics, and to that end, she is building a database of such women and other gender-sensitive scholar-activists. Zerai argues that the under-citing of women scholars is a barrier to decolonial thought. Basically, if all of researchers’ best minds are not brought to bear to address the societal issues and essential questions of poverty and inequity, they will never solve that puzzle! Further, Zerai believes the inclusion of the voices of African women provides the opportunity to create intellectual tools to build toward social justice instead of reproducing master narratives. Without the intellectual diversity that African feminism offers, capital expansion and subsequent development, even in the wake of social movements and protests, morph not into something liberatory but into something predatory. Zerai has shown that the voices and contributions of African women scholars are regularly excluded from multiple fields of study. Indeed, her research points to evidence of a double displacement: not only is African scholarship often excluded from western databases, the intellectual circles of the African continent often overlook the work of
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African women, especially those whose research is feminist or women centered. Whereas western scholarship and teaching have often worked to disempower marginalized populations and have been an integral part of colonizing strategies, the database of African women’s intellectual work is a tool to decolonize research by initiating a sea-change in the way that scholars conduct research. It offers the opportunity to counter the androcentrism of current scholarly literature across key fields of study and to further offset the hegemony of North Atlantic social scientists, engineers, and development specialists who consistently fail to engage African scholars’ work or to consult with stakeholders in African communities. To bridge this digital and intellectual divide, Zerai is building the Database of African Women’s Scholarship by cataloging the scholarship published by women at select African universities. So far, this encompasses an incomplete list of faculty in Kenya, Malawi, Tanzania, Uganda, South Africa, and Zimbabwe. When Zerai began to create this resource for her own research and to further that of her students and colleagues, she located female scholars in the departments relevant to her subjects of inquiry in universities of the countries named above and then explored their websites, curricula vitae, and profiles on Google Scholar, ResearchGate, and other sites. Next, she generated a list of publications for each scholar. With this newly excavated body of scholarship, and from the websites and newsletters of women’s nonprofit organizations, Zerai has been able to embark on research projects that she could not have envisioned otherwise. An exciting outgrowth of the database is the creation of new scholarship by analyzing novel variable operationalizations that are informed by African women’s intellectual contributions. Some examples include the following: (a) Zerai (2019) challenges androcentric definitions of good governance and analyzes women’s access to ICT and its impact on gender-sensitive definitions of political, institutional, and economic governance. (b) Zerai (2014, 2016, 2019) propose that UN Millennium Development Goals are insufficient when they do not address the secondary marginalization of ethnic minorities within African countries. (c) Zerai served as USAID consultant examining SGBV in MENA (in conflict settings against members of religious and other minorities and identifying effective measures to help individuals/families/communities prevent, cope, and recover from conflict-related SGBV). For example, in her fifth book, African Women, ICT and Neoliberal Governance (2019), Zerai engages Simplice Asongu and Jacinta Nwachukwu’s (2016) argument that access to information and communications technology (ICT) – cell phones, personal computers, and the Internet – is linked to the development of more democratic governance structures in African countries. As a social demographer writing from an African feminist perspective, Zerai challenges Asongu and Nwachukwu’s androcentric line of inquiry, which defines “good governance” in ways that exclude the concerns of African women and the realities of their lives and which does not account for the impact of women’s access to ICT. Zerai provides
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evidence that women’s access to ICT makes a difference in the success of peoplecentered governance structures, and she further demonstrates how African women’s scholarship, too often marginalized, must be used to expand and redefine the goals and indicators of democratic governance in African countries. Working in concert with her students, colleagues, and noted scholars and stakeholders in Malawi, Tanzania, Uganda, South Africa, and Zimbabwe, Zerai ultimately envisions the Database of African Women’s Scholarship as a tool to promote cultural change within North Atlantic and African scholarly circles by raising awareness of local scholarship and promoting the knowledge of local experts. The Database promises a future in which field research is carried out by western scholars only in consultation and collaboration with local specialists and in which the research of African scholars – especially women – is taken fully into account by their peers across the globe. This epistemological transformation will create better partnerships and pave the way for the co-creation of more adaptable and acceptable technologies, as well as other much-needed interventions and innovations.
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Ethical Considerations
When considering decolonized methodologies, both the perspectives of the researcher and the participants have to be considered, as power differentials are in existence. For too long, the methodologies employed saw the researcher as holding the power. Ndlovu-Gatsheni (2017, p. 1) stated that the “re-searched” appear as “specimens” rather than people. He stated further that “decolonizing methodologies is an ethical, ontological and political exercise rather than simply one of approach and ways of producing knowledge.” The researcher who superimposes his assumptions on the people being researched as being the only perspective provides unethical and false data. Some have described this as the world being seen through a patriarchal lens. When researchers describe this as a ‘patriarchal lens’ – it does not mean just a reflection on men but rather a reflection on a patriarchal system. Thus, dismantling a system dismantles the assumptions that surround this perspective on and practices of gathering data. See: https://www.chaosandlight.com/seeingbeyond-the-lens-of-patriarchy/ Understanding power dynamics is important to avoid taking a dominant position, as adopting a dominant position echoes colonizing practices (Brannelly 2016). Thus, centralizing the experience of Indigenous people, historically and in the present, and an awareness that actions and responses may infer dominant colonizing practices provide an opportunity to approach Indigenous people to begin a conversation. Invisible power dynamics are embedded within research frameworks, which are particularly apparent in studies involving VIPs. If not checked appropriately, researchers possess an unequal power to define, label, and alienate oppressed populations (Datta 2018). Decolonizing research is, therefore, important to break hierarchical barriers between researchers and participants, which can be achieved by being critically reflexive and enabling reciprocity within relationships (Thambinathan and Kinsella 2021).
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Consequently, the methodology has become a straitjacket, and this disciplinary tool makes it difficult for new knowledge to be discovered and generated. Therefore, it is ethical to understand the socio-political status of any community that we seek to learn more about. It is crucial that we shif the identity of the subject so as to reposition those who have been objects of research into questioners, critics, theorists, knowers, and communicators. And, finally, it means recasting research into what Europe has done to humanity and nature rather than following Europe as a teacher to the rest of the world. Brannelly (2016) adopted the ethics of care approach and built relationships with the Māori people. She recognized their power as they are the holders of their knowledge. The integrity of care framework was intentionally applied, to work through cultural, social, and historical aspects of participation. Researchers can learn much from exercising humility and listening to VIPs. DFM researchers’ decolonized practices make space to embrace the opportunity to be allied with struggles in solidarity with VIPs to contribute to new ways of being in the future. The reality facing scholars from Indigenous sites is that there is no way to escape the already well-developed traditions in ethics with the accompanying technical terms and canonical/classical texts (Mbembe 2015). This is in fact the very way in which Indigenous-based scholars are introduced to ethics. Unfortunately, there is limited information vis-à-vis tabula rasa or Archimedes starting point, for example, “in Africa,” (though some exceptions are found in work such as Cheikh Anta Diop’s Precolonial Black Africa [1987] and Ifi Amadiume’s Male Daughters, Female Husbands: Gender and Sex in an African Society [2015], these texts are not widely taught) from where one can subsequently approach the established canons of ethics built over a centuries-long written tradition in the West. Western ethics traditions are undergirded by an individual’s ability to choose, such as autonomy and informed consent. However, most Indigenous peoples promote “ubuntu” – embracing of community or the collective. Individuals think and move as a collective in the spirit of oneness. Ubuntu acknowledges the beliefs and practices of the collective that influence and inform every facet of human life.
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Conclusion: Social Justice as Inspiration for Using Decolonial Feminist Methodologies
This chapter has introduced this topic by discussing the importance of decolonial methodology and teaching in the Global South. It then examined the logic that gives rise to decolonizing methodology by highlighting the relevance of power, privilege, and coloniality to the study of communication disorders and distinguishing epistemological differences among mainstream and decolonial approaches. Furthermore, it has provided examples of and guidelines for decolonial feminist research methodologies in social sciences studies of global health, including qualitative approaches, critical reflection in decolonial feminist methodologies (DFM), valuing
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traditional healers, quantitative approaches, and reference practices that reflect DFM. It has also concluded discussion by reviewing ethical considerations, especially within contexts of global health. One theme that underlies decolonial feminist methodologies is social justice. DFM is not carried out in a vacuum. The desire to promote social justice and equity is at the core. The authors hope to enhance greater justice by bringing the voices of VIPs and racially and culturally excluded communities to the center, first, as the focus of research, including valuing members of these communities as knowledge experts, foregrounding their cultural wealth, and acknowledging the strengths embedded in current and traditional practices; second, by promoting equitable and just citation practices in which local scholars are referenced in their work; and third, by collaborating with local scholars and community experts in research endeavors. Their preoccupation with social justice also underlies ethical commitments to VIPs and other marginalized groups to go beyond “doing no harm,” to doing the work of decolonizing their minds. Reading the works of decolonial scholars, building communities of practice in which researchers can exercise their analytic skills and develop their praxis, and connecting with affected communities humbly, authentically, and organically are all necessary to the adoption of decolonial feminist methodology. In the future, we will continue to pursue the project of decolonizing feminist methodology by engaging in practices noted herein. In this conclusion, we point especially to the importance of citational justice practices to demonstrate how African women’s scholarship, too often marginalized, must be used to expand and redefine the goals and indicators of public health, especially relevant in this era of global pandemics. Rooted at the University of the Witwatersrand, and working in concert with noted scholars and stakeholders at multiple research institutions in South Africa and the USA, we will support women scholars through development of focused writing groups and other mentoring activities. And we will continue our work to construct a Database of African Women’s Scholarship. Ultimately, we envision this as a tool to promote cultural change within North Atlantic and African scholarly circles by raising awareness of local scholarship and promoting the knowledge of local experts. The Database promises a future in which field research is carried out by western scholars only in consultation and collaboration with local specialists and in which the research of African scholars – especially women – is taken fully into account by their peers across the globe. This epistemological transformation will create better partnerships and pave the way for the co-creation of more adaptable and acceptable technologies, as well as other much-needed interventions and innovations. The Database of African Women’s Scholarship bridges digital and intellectual divides by cataloging the scholarship published by women at African universities. We plan to continue making North and South Atlantic scholars aware of the Database of African Women’s Scholarship and encourage its use. We will do this through publications and conference presentation, as well as through the use of the
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Database for our own future research. And we will continue to train our postgraduate students to use and contribute to the Database of African Women’s Scholarship when they are conducting research in settings affected by digital inequality. Through these efforts, we seek to “disrupt the conventional division of labor in the social sciences, in which African scholars provide empirical evidence while the heavy lifting of theorizing are left to their western counterparts,” as Michael West (2015) has characterized the problem. Answering UNESCO’s call to work in dialogue with intellectuals and practitioners in the Southern Hemisphere is a crucial intervention if we want to stem the process of critical decay within the social sciences and other fields and to surmount the very grave intellectual and practical problems that have resulted from their lack of intellectual diversity. For many of us, global imperatives such as equity, sustainability, and human rights inspire our academic pursuits. Moving beyond our limited understandings so that we can better address such questions requires a free flow of ideas that eschews the marginalization of women in the Global South. This cannot happen if we do not rectify transnational and gendered digital inequalities. We audaciously call for a transformation in social sciences epistemology. Female academics need to be given more of a voice and decision-making power in academia, then only will their knowledge production be recognized. Building the Database of African Women’s Scholarship will amplify the voices of women scholars in African countries and will demonstrate how their perspectives and findings are indispensable to scholars working in the multiple disciplines such as development effectiveness, gender and women’s studies, health, and social studies of science and technology in these countries. It will also serve as a model for databases that could transform research in many other fields and in many other parts of the world. The Database and resulting scholarship promise to highlight the heretofore underutilized yet vibrant intellectual work of women researchers in Africa and beyond. Moving beyond the database, we will continue to work toward supporting women and nonbinary scholars and academics. We will know change has occurred when they are no longer underrepresented among principal investigators supported by national and private grants, when they have access to equitable funding of their research endeavors, including fellowships.
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Cross-References
▶ Critical Public Health ▶ Feminist Methodology ▶ Gender Theory and Global Public Health ▶ Global Health ▶ Social Determinants of Health and Global Public Health ▶ Social Justice and Global Public Health ▶ The Essence of Social Sciences in Global Public Health: An Introduction
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Feminist Pedagogy, the Women’s Health Movement, and the Rise of the Anti-diet Health Professional Natalie Jovanovski
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Women’s Liberation and Feminist Pedagogy: The Birth of Women’s Studies . . . . . . . . . . . . 2.1 Consciousness-Raising: Lived Experience and Political Mobilization . . . . . . . . . . . . . . 2.2 Feminist Pedagogy and Women’s Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Women’s Health Movement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Feminist Pedagogy and the Women’s Health Curriculum . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Lived and Learned Experiences: The Emergence of the “Anti-Diet” Health Professional . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Activist Opposition to Diet Culture: Foregrounding Women’s Lived Experiences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Health Professional Opposition to Diet Culture: Lived and Learned Experiences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Feminist teaching methods, informed by the Women’s Liberation Movement, have played an important role in honoring and giving authority to the lived experiences of women under patriarchy. These methods have been particularly useful in the health sciences, which have traditionally been the site of androcentric ideas about health and the trivialization of women’s health concerns. However, in recent decades, women have entered the health sciences in greater numbers and incorporated their lived experiences as women into their “learned experiences” as health professionals. One notable example of the successful merging of women’s lived experiences under patriarchy, and their learned N. Jovanovski (*) Melbourne School of Population and Global Health, University of Melbourne, Carlton, VIC, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_5
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experiences in male-dominated health sciences, is the pedagogy and practice of weight-inclusive health professionals. This chapter discusses the origins of Women’s Studies, its significance to the Women’s Health Movement and its emergence in the health sciences, and the “anti-diet” movement as a contemporary example of women’s lived and learned experiences in improving women’s health. Overall, this chapter concludes by reflecting on the legacy of feminists and fat activists who inspired “anti-diet” health professionals, and on the future of the weight-inclusive health paradigm. Keywords
Women’s Studies · Feminist pedagogy · Women’s Health Movement · Anti-diet movement · Weight-inclusive paradigm
1
Introduction
Feminist teaching methods informed by activism have played an important role in honoring and giving authority to the lived experiences of women under patriarchy. Emerging from the practice of consciousness-raising in the Women’s Liberation Movement (WLM) and contributing to the development of Women’s Studies as a discipline, listening to women’s experiences of oppression has contributed to the generation of paradigm-shifting theories about women’s place in contemporary Western culture. Lived experiences have also been at the forefront of the Women’s Health Movement (WHM), which emerged from the broader WLM in the late 1960s (Nelson 2015; Sobnosky 2013). Those in the WHM were able to draw on feminist methods of activism to set up educational materials, women’s shelters, and abortion clinics to advance women’s rights in the world of healthcare. Understandably, in much of the early literature, women’s voices (i.e., their lived experiences) and medical voices (e.g., learned experience) were seen as two opposing perspectives on women’s health (e.g., Boston Women’s Health Collective 1970), and most references to biomedicine cast a critical gaze over its sexist and discriminatory practices against women (Birke 1980; Ehrenreich and English 1978). In recent decades, however, there has been a concerted shift in the number of women entering the health sciences, which has resulted in the introduction of feminist teaching methods to the medical curriculum and consciousness-raising as a source of professional development (de Aguilar 1998). This chapter looks at the powerful intersection between having a lived experience of being a woman under patriarchy and a learned experience as a health professional simultaneously. Using the “anti-diet” movement as a contemporary example, this chapter will show how neat divisions between women and health professionals have been disrupted in the last five decades to the benefit of women’s healthcare. Namely, this chapter will show how efforts to dismantle diet culture – a multi-institutional system of domination that predominantly affects the health and well-being of women and girls – emphasize the significant gains made by feminists in the both the women’s liberation
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and fat liberation movements in shifting and challenging androcentric, weightfocused paradigms in medicine and improving the conditions surrounding women’s healthcare.
2
Women’s Liberation and Feminist Pedagogy: The Birth of Women’s Studies
The WLM played an important role in the development of the first Women’s Studies curriculum (David 2016; hooks 1994; Stake 2006). It also re-energized feminist activism and advocacy throughout the West (Megarry 2020; Willis 1984). Emerging at the height of the feminist “second-wave” in the late 1960s throughout the United States and other Western countries, the primary goal of the WLM was to foreground sex as a central axis of women’s oppression, to unpack gender (or “sex roles”) as cultural mechanisms that oppress women, and to liberate women from patriarchal domination (Megarry 2020). Frustrated by existing male-dominated social movements such as the New Left, women organized collectively to center women in their advocacy and activism. As Ellen Willis (1984, p. 94) recounts in her essay Radical Feminism, Feminist Radicalism, identifying sex as a marker of oppression was a controversial position to take in countercultural circles: It’s hard to convey to people who didn’t go through that experience how radical, how unpopular and difficult and scary it was just to get up and say, “Men oppress women. Men have oppressed me. Men must take responsibility for their actions instead of blaming them on capitalism. And yes, that means you”. We were laughed at, patronized, called frigid, emotionally disturbed man-haters and – worst insult of all on the left! – apolitical.
Far from being an apolitical project, however, women’s liberation involved paying attention to women’s day-to-day experiences of sexism and grounding these experiences in broader structural analyses of women’s oppression (Sarachild 1973). By reflecting on power, women’s liberationists named male supremacy as the primary source of women’s oppression. Referred to by some feminist theorists as patriarchy (e.g., Millett 1970), male supremacy was defined as “a set of material, institutionalized relations” (Willis 1984, p. 93) that naturalize men’s dominance over women in both the private (e.g., the home) and the public sphere (e.g., in the workplace). For many feminists in the WLM, this material and multi-institutional source of power manifested in inequality between the sexes; one that was normalized through everyday practices and interactions in the form of sex roles (or “gender”). Tyler (2011, n.p) explains that sex roles are “roles that are socially constructed, but enforced on the basis of sex differences.” Roles designated to women under systems of male supremacy (i.e., femininity), for example, have both reflected and reinforced women’s subordination, such as selflessness (Oakley 1976), and perceiving one’s body as ornamental rather than functional (Brownmiller 1984). For men, sex roles have been naturalized to emphasize dominance (i.e., masculinity), and have been both reflected and reinforced in norms such as autonomy, leadership, and
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aggressiveness (Jensen 2017; Katz 2006). For those in the WLM, sex roles were understood as a principal method through which patriarchy maintains its cultural and material dominance over women and girls. Challenging men’s and women’s socialization into sex roles was seen as a critical part of overturning male supremacist cultures. Some of the more notable ways that women questioned and resisted sex roles were through women-only organizing and the rejection of sex role stereotypes. This often included the rejection of beauty practices and engagement with women-only communities (Megarry 2020). Other ways involved promoting women’s entry into institutions that had traditionally excluded them for centuries, such as education (David 2016) and medicine (e.g., Boston Women’s Health Book Collective 1970). For many women, however, the first step to challenging male supremacy involved meeting with other women and talking; a small-group process known as the consciousness-raising group (Allen 1970; Bruley 2013; Rosenthal 1984; Sarachild 1973).
2.1
Consciousness-Raising: Lived Experience and Political Mobilization
Consciousness-raising refers to a small-group process whereby women share, honor, and give authority to their lived experiences under patriarchy. Emerging from existing social movements and their methods of community-building and organizing (e.g., Chinese revolution, Black Liberation (Willis 1984)), consciousness-raising served the dual function of fostering autonomy in women and uniting them as a sex class to act collectively for their liberation (Bruley 2013; Megarry 2020). According to Whittier (2017), consciousness-raising groups exploded in popularity in the 1970s in the United States and other Western countries, with some groups addressing women’s experiences of intersecting forms of oppression (e.g., sex and race). As Bruley (2013) explains, consciousness-raising groups were often comprised of a small number of women (e.g., six to eight) and attended once every week or fortnight. Despite being simple in design, the purpose of consciousness-raising was to unite women’s experiences and encourage them to mobilize against patriarchy collectively. In an early description of the small-group process, radical feminist Pamela Allen (1970) described consciousness-raising as a four-stage process: opening up, sharing, analyzing, and abstracting. Each stage, she argued, assisted women – as a group – to gain autonomy over their lives, or as she put it, to “develo[p] as individuals who understand themselves, their own needs, the workings of our society and the needs of others” (p. 271). The first stage, opening up, involved women describing and taking ownership of their own lived experiences under patriarchy. During this process, women learned to feel comfortable voicing their experiences and trusting other women in the group. This stage resulted in other women sharing their experiences, which helped to generate a sense of collectivity. Quite often, during the sharing stage of consciousness-raising, women came to learn that their experiences of oppression – or the day-to-day experiences of sexism they face – were also experienced by other women. After the process of opening up and sharing,
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women spent time analyzing the causes of their shared oppression as a group. This stage of the consciousness-raising process involved actively externalizing one’s sense of helplessness and interrogating the sources of power that underlie women’s shared oppression. Lastly, women engaged in a process of abstraction. Abstraction involved women mobilizing to challenge the sources of power they identified; a process that distinguished consciousness-raising from group therapy contexts (Rosenthal 1984). While consciousness-raising groups were a powerful source of political organizing for feminists in the WLM, and were “originally envisioned as a means of creating revolution” (Rosenthal 1984, p. 309), their popularity waned in the 1980s due, in part, to the rise of conservative, neoliberal governments in the West and what some refer to as the defanging of radical feminist analysis from public discourse (Fahs and Bertagni 2013; Firth and Robinson 2016; Megarry 2020; Rosenthal 1984). Elements of consciousness-raising, however, survived in the Women’s Studies classroom, magnifying the idea that knowledge is developed through women contemplating and sharing their lived experiences.
2.2
Feminist Pedagogy and Women’s Studies
Throughout the late 1960s, women involved in WLM activism began entering traditionally male-dominated institutions, such as universities and the world of medicine, in greater numbers (Boxer 1982; David 2016). According to David (2016), women’s participation in these institutions – particularly in the arts, humanities, and social sciences – resulted in the development of the first Women’s Studies curriculum, and revolutionized the way that other disciplines talked about women’s experiences (e.g., Women’s Health). Women’s Studies – later renamed Women’s and Gender Studies or Gender Studies – foregrounded women’s lived experiences under patriarchy as powerful forms of knowledge and theory-building (Welch 2006). According to Welch (2006, p. 172), Women’s Studies was a paradigm-shifting field of study that aimed to revolutionize the male-dominated academy and its ideas: The staff and students who took Women’s Studies into the academy saw the need to challenge and attempt to change existing curricula, epistemologies and pedagogies in the interests of women. They critiqued the higher education curriculum, not just because it largely ignored women’s experiences and perspectives, but also because it distorted human history and culture by this exclusion.
Perhaps unsurprisingly, Women’s Studies was shrouded in controversy for its perceived overvaluation of personal experiences as forms of knowledge. As Stake (2006, p. 201) explains, conservative commentators and politicians criticized feminist educators for “providing false reassurances of women’s worth [and] overemphasising students’ personal feelings and experiences in place of serious scholarship.” Nevertheless, Women’s Studies practitioners continued to challenge traditional sex roles and revise pedagogical methods through their privileging of women’s lived experiences (Welch 2006). As Boxer (1982, p. 662) explains, “this
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educational reform . . . bec[a]me a social movement” of its own, and was considered the educational arm of the WLM when it first emerged. The feminist classroom was one place where elements of the revolutionary smallgroup consciousness-raising process continued to thrive (e.g., Fahs and Bertagni 2013), long after the practice waned in the 1980s and beyond (Rosenthal 1984). Rather than being spoken about in disciplines that had traditionally excluded women, the Women’s Studies classroom offered women an outlet to voice their own experiences of living under patriarchy (David 2016; Robinson 1997). This process was often emotionally charged and fraught with difficulties. Much like the conflicts that emerged in consciousness-raising groups throughout the WLM (Bruley 2013) – conflicts that occasionally resulted in divergent theories about the nature of women’s oppression – the Women’s Studies classroom was also “a site of conflict, tensions, and sometimes ongoing hostility” (hooks 1994, p. 113). Education involved encouraging the expression of different viewpoints and experiences, and magnifying voices that have been traditionally excluded from academic settings (e.g., low-income women’s experiences). According to Silverman (2000, p. 140), the role of the Women’s Studies educator was to occasionally enter the “wild zone”; that is, a place where the discussion “take[s] you places you have never been before, to unanswerable questions, far afield from your comfort zone, your sense of mastery of ‘your’ material and ‘your’ classroom to uncomfortable impasses and the like.” Experiencing a sense of discomfort – both as student and educator – was, thus, a broader part of the learning process, and one that encouraged new theorizations of women’s oppression. Unlike the consciousness-raising group, however, the Women’s Studies classroom contained a hierarchical structure (e.g., teacher and student) that existed regardless of whether or not the educator adopted a leadership stance (Weller 1991). Feminist educators, who were strongly influenced by Paolo Freire’s (1970) work on critical pedagogy and liberation, challenged the traditional didactic teaching methods employed in universities, which relied on rote learning and rigid hierarchies in the classroom (Crawford and Jackson-Best 2017; hooks 1994). By contrast, they understood the Women’s Studies classroom as a space where women learn from one another, both theoretically (e.g., reading existing texts) as well as experientially (e.g., through the small group learning process). As such, feminist pedagogy was often a balance between more radical aspects of consciousness-raising and the unavoidably hierarchical structure of the university classroom. Weller (1991, p. 460) explains that: Early consciousness-raising groups were homogenous, antagonistic to authority, and had a commitment to political change that had directly emerged from the civil rights and new left movements. Feminist pedagogy within academic classrooms addresses heterogenous groups of students within a competitive and individualistic culture in which the teacher holds institutional power and responsibility.
Indeed, the individualism of the classroom, coupled with the popularity of postmodernism throughout the 1980s, led to the controversial rebranding of Women’s Studies to “Gender Studies” in the 1990s (Braidotti 1992; Evans 1990). While it has been
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argued that focusing more broadly on gender – as role, norm, stereotype, or identity – has opened up space for men and trans/gender-diverse people to contribute to theorizing patriarchal oppression, modifying Women’s Studies to focus specifically on the study of gender has also shifted focus away from prioritizing women’s lived experiences under patriarchy as sources of knowledge and theory-building. Indeed, as Robinson (1997, p. 23) argues, some feminist writers have even argued that the radical ideas that once defined Women’s Studies were being muted by the “politically safe option” of decentering women from debates that are central to their lives. Nevertheless, the contribution of Women’s and Gender Studies to the academy – and feminist activism in the West, more broadly – has played a significant role in shaping adjacent disciplines, such as those in the health sciences (Bernhard 2003; de Aguilar 1998; Sobnosky 2013).
3
The Women’s Health Movement
The introduction of feminist teaching methods to the health sciences emerged in response to the health activism of women’s liberationists, the development of Women’s Studies in the arts, humanities and social sciences, and a growing body of literature describing examples of medicine as a patriarchal institution (Birke 1980; Boston Women’s Health Collective 1970; Ehrenreich and English 1978; Ussher 2021). As Dan (2003, p. 29) explains, “like women’s studies, women’s health became the academic arm of a movement that had begun with advocacy efforts on behalf of women.” For many women, advocacy in academia involved identifying and challenging sexism in healthcare by listening to women’s lived experiences as patients, and using these experiences to inform changes to healthcare. Throughout the late 1960s and early 1970s, feminist theorists sought to understand sexism in medicine and find ways to challenge its grip on women’s bodily autonomy. In their now-iconic feminist treatise For Her Own Good, Barbara Ehrenreich and Deirdre English (1978) trace the medical (mis)treatment of women throughout history, focusing specifically on the pathologization of women’s emotional states under oppressive social conditions in the West. They argue that in the late nineteenth and early twentieth centuries, the authority of the male physician surpassed the role of the priest in the pre-Enlightenment era, making knowledge claims about women’s health that were not based on science but, rather, on unquestioned sex role stereotypes. Ehrenreich and English (1978) cite hysteria nervosa as an example of medical sexism, whereby women were medicalized, institutionalized, and even mutilated (e.g., through medical procedures such as clitoridectomies and lobotomies) for engaging in acts as mundane as reading and riding a bicycle (see Astbury 1996). “The theories which guided the doctor’s practice from the late nineteenth century to the early twentieth century,” they explain, “held that woman’s normal state was to be sick” (Ehrenreich and English 1978, p. 110). Feminist analyses identified that physicians, thus, played a part in reinforcing longheld assumptions that women’s natural state was one of submission. Women’s sexuality was also pathologized in the health sciences. In her chapter for Alice
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Through the Microscope, Linda Birke (1980) discusses how female sexuality – and in particular, lesbianism – was medicalized and circumscribed throughout much of the early 1900s in the scientific literature. Framed by doctors and psychoanalysts as an abnormal sexual response, Birke argues that efforts to medically curb homosexuality in women often involved ridicule (e.g., mocking a woman for being sexually aroused by female genitals) and subjecting women to forms of aversion therapy (e.g., conditioning a woman to feel unpleasant physical symptoms upon arousal). Unsurprisingly, feminists in the 1960s and 1970s began to question the authority of the “too male, too pale, [and] too stale” physician (Brown et al. 2020), the institutions in which he operated, and biases inherent in the healthcare system more broadly (Sobnosky 2013). The late 1960s saw the emergence of the WHM as an important part of the broader WLM. According to Sobnosky (2013), the WHM was not comprised of clear national leaders. Rather, it could more accurately be described a decentralized yet densely interconnected network of women operating throughout the United States and other Western countries to advance women’s rights in relation to healthcare. The early WHM was fueled by many of the radical theories advanced in the WLM, such as the rejection of sex roles and the privileging of women’s lived experiences as sources of knowledge (Bernhard 2003). As Nelson (2015, p. 6) explains, women question the way that doctors trivialized their symptoms and “began to define health care delivery for themselves in ways that challenged sexed and gendered hierarchical power relationships.” Grassroots women’s organizing, often through regular consciousness-raising groups, produced conferences and documents that reflected on, and sought to improve, women’s healthcare experiences. One notable example of the power of women’s small-group organizing is the Boston Women’s Health Collective and their seminal, multi-edition text, Our Bodies, Ourselves. Judy Norsigian (2019), a founding member and former executive director of Our Bodies, Ourselves, recounts the origins of the group in her article on the 50th anniversary of Our Bodies, Ourselves. She explains that the idea for the book emerged from a female liberation conference at Emmanuel College in 1969, fueled by women’s dissatisfaction with their (mis)treatment in medical contexts. In the introduction of their first edition of Our Bodies, Ourselves (referred to as “Women and their bodies: A course”; Boston Women’s Health Collective 1970, p. 3), the women of the Boston Women’s Health Collective explain that: After [the conference], several of us developed a questionnaire about women’s feelings about their bodies and their relationship to doctors. We discovered there were no “good” doctors and we had to learn for ourselves. We talked about our own experiences and we shared our own knowledge. We went to books and medically trained people for more information. . . For the first time, we were doing research and writing papers that were about us for us. . . We saw ourselves differently and our lives began to change.
Many of the original actions of the WHM were simple, but effective ways of helping women understand their bodies. This included encouraging women to demystify the
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vulva by examining their genitals using small hand mirrors, and occasionally inserting a speculum into their vagina to see their cervix. Other types of activism were focused less on understanding oneself and more on materially protecting women as a sex class. This involved participating in information sharing to promote sociopolitical action (e.g., through educational manuals, newsletters, and pamphlets), or setting up women-only refuges and abortion clinics that were run by women, for women (Hunt 1997).
3.1
Feminist Pedagogy and the Women’s Health Curriculum
While activists from the WLM developed the first Women’s Studies subjects to challenge androcentric biases in the arts, humanities, and social sciences, activists from the WHM entered into academic and medical institutions with the same goal (Dan 2003). For many women, sharing information through pamphlets, newsletters, self-help manuals, consciousness-raising groups and grassroots women’s health clinics was a powerful way to help women reflect on their experiences of medical sexism and act on them. For others, broader social change involved encouraging women to enter institutions that had typically excluded them (e.g., medical schools). For women in the movement who held liberal feminist values, predicated on notions of equality between the sexes, leveling the playing field and achieving parity in educational and medical institutions was a way to achieve women’s rights. For others, such as radical feminists, who focused on liberating women from sex role stereotypes, this solution was “too often symbolic rather than substantive” (Hill 2009, p. 631), and minimized the significance of undervalued female-dominated medical professions, such as nursing (Bernhard 2003). Despite key differences between factions of the broad women’s movement, a central tenet of all WHM activists and educators was to honor the lived experiences of women as forms of knowledge and design healthcare that was appropriate to women’s needs. This task was often challenging in male-dominated medical institutions because knowledge was typically discounted if it was perceived as “subjective” rather than “objective.” As feminist scholar Lorraine Code (1991) explains, the chasm between “knowledge” and “experience” in many scientific criticisms of feminist pedagogy is paradoxical to the nature of empirical investigation itself. She questioned: if sensory experience (i.e., empirical investigation) can be classified as an accredited form of knowledge, then why are women’s experiences of living under patriarchy exempt? Indeed, as radical feminist Kathy Sarachild (1973, p. 145) explains in Consciousness-raising: A radical weapon, lived experiences could be considered part of the scientific method: The decision to emphasise our own feelings and experiences as women and to test all generalisations and reading we did by own experience was actually the scientific method of research. We were in effect repeating the 17th century challenge of science to scholasticism: “study nature, not books,” and put all theories to the test of living practice and action.
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Many of the key tenets of Women’s Studies – such as feminist pedagogy and the importance of women’s lived experiences – helped bring the WHM into the health sciences (Nelson 2015; Sobnosky 2013). However, introducing women’s health as a specialization in the medical curriculum – one grounded in the social model of health – was not without its difficulties. The barriers that Women’s Studies educators faced in the arts, humanities, and social sciences were magnified in traditionally male-dominated disciplines, such as medicine and pharmacology (Poirier 2003). As Poirier (2003, p. 194) contends, education programs in the health professions “privilege[d] biology over environment, and. . . cultivate [d] technical skills at the expense of the interpersonal.” More often than not, it was assumed that women’s health related solely to gynecological conditions rather than broader social justice issues (Hunt 1997; Sobnosky 2013). Using feminist pedagogy – which is strongly predicated on women’s subjective experiences as sources of knowledge – was a challenge for those in the otherwise objective world of biomedicine. Much of the early women’s health curriculum focused on where women’s lived and learned experiences coalesced, as women began entering the health sciences in greater numbers. Being a woman with a lived experience of medical sexism and having a position of medical authority was an ongoing learning process for many women. As de Aguilar (1998) reflects in her discussion about being a young medical student with a passion for women’s health, participating in extracurricular consciousness-raising sessions with other female physicians was a critical part of her medical education. de Aguilar, (1998, p. 37) explains that, “if gender-sensitive students do not find support to resist the objectification of women patients and their own invisibility within medical school, it becomes very difficult to hold the values they once firmly believed.” For women in traditionally female-dominated health professions, sometimes described as the “soft sciences” (Light et al. 2022), applying feminist ideas to healthcare was often risky. In nursing, for example, the incorporation of feminist theory into teaching and practice risked being perceived as “radical” and a threat to the established, and often gendered, hierarchies of the hospital. As Bernhard (2003, p. 85) argues, “challenging the [male-dominated] system [of medicine] leads to scrutiny and pressure to conform. Nurses and nurse practitioners are in an oppressed position relative to medicine.” Despite some femaledominated “soft sciences,” such as dietetics (e.g., Brady 2017), having incorporated positivist methodologies in their discipline and aligning with the biomedical model, the undervaluation of women’s lived experiences and expertise in the broader healthcare context reflects the continued need for a women’s health curriculum in the health sciences. Given that women continue to remain underrepresented in medical leadership positions (e.g., CEOs of hospitals) and experience high levels of sexual harassment in their role as health professionals (El Jaouhari 2020), contemporary examples of the benefits of feminist pedagogy – and the merging of both women’s lived and learned experiences – are critical to the future of women’s healthcare.
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Lived and Learned Experiences: The Emergence of the “Anti-Diet” Health Professional
One example of the contemporary merging of women’s lived and learned experiences is the advocacy and activism of the “anti-diet movement.” Best described as a decentralized network of feminist, fat liberationist, and weight-inclusive health professional voices, the broad anti-diet movement seeks to dismantle the reinforcement of weight-loss, sometimes referred to as “diet culture.” As a sociocultural phenomenon, diet culture is characterized by a moral hierarchy of bodies (i.e., the privileging of thinness over fat) and set of myths about food and bodies (i.e., that our hunger should be moderated through external rules) that predominantly affect women and girls. These beliefs about food and bodies are said to be driven by multiple structures and systems of domination (e.g., patriarchy, racism, and capitalism) as well as institutions that operate within these systems (e.g., health and beauty industries; Jovanovski and Jaeger 2022). Research shows that men as well as trans/ gender-diverse people are also adversely affected by the cultural valorization of weight-loss (Bell et al. 2019). However, it is predominantly women and girls who experience pressure to restrict their caloric intake and lose weight, regardless of their weight, shape, or size (Sares-Jaske et al. 2019). While weight-loss dieting is often touted as a health practice in many contemporary Western discourses, intentional food restriction has been associated with a host of adverse physical and psychological health outcomes (Calogero et al. 2019; Tylka et al. 2014). It has also been associated with weight stigma – or the disapproval of and discrimination against larger bodies – which some researchers have found contributes to healthcare avoidance in women (Mensinger et al. 2018). Challenging the ideas and systems that underlie diet culture has been an important task for those engaged in anti-diet advocacy and activism. For some health professionals who have entered the debate, listening to the lived experiences of women has both informed and influenced their learned experiences and provision of healthcare. For others, a combination of lived and learned experiences with dieting and disordered eating has shaped their advocacy and professional practice (e.g., Orbach 2006; Willer 2021). In this chapter, it is argued that the diverse anti-diet movement reflects the legacy of women’s liberation and feminist pedagogy, through the anti-diet activism and advocacy of feminists and fat activists over the last five decades, and the more recent development of paradigm-shifting weight-inclusive approaches to health.
4.1
Activist Opposition to Diet Culture: Foregrounding Women’s Lived Experiences
The female body has been a source of much theorizing and debate for feminists, especially among those in the WLM. While women’s reproductive rights and sexuality were often the focus of advocacy and activism in the movement, women also reflected on pressure to change their appearance due to the cultural scrutiny of
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their bodies. For some feminists in the WLM – as well as those influenced by its ideas – weight-loss dieting was understood as one beauty practice among many that reflected women’s subordinate social status under patriarchy (Bartky 1990; Bordo 2004; Brownmiller 1984; Wolf 1990). In her book Femininity, for example, radical feminist writer Susan Brownmiller (1984, p. 14) argues that sex role expectations of women reflect “a challenge thrown down [to] the female sex . . . [that] no proud, selfrespecting young woman could afford to ignore.” Reflecting on her own lived experiences of dieting and body dissatisfaction, Brownmiller (1984, p. 26) states that: In recent years my stomach has been showing signs of spread, implacably female instead of teenage flat, and I cannot pass a group of construction workers on a New York City street without involuntarily sucking in my gut. I do my yoga every morning, eat less than I used to and try not to think about chocolate. . . I will continue to be obsessed with my body until . . . I am past the age of sexual judgement and no longer concerned with what a man might think.
Preoccupations with thinness as a sign of youth and heterosexuality were also discussed by other feminist writers. Feminist philosopher Sandra Lee-Bartky (1990), for example, reflects on her sexual and self-objectification from a phenomenological perspective in her collection of essays entitled Femininity and Domination. For Bartky (1990), women are socialized to look at themselves through the heterosexual male gaze, and to modify their bodies according to what men (or patriarchal institutions) deem sexually attractive. Dieting, from this perspective, is one way that women achieved the “thin-ideal,” or the gendered surveillance that requires them to be cognizant of men’s thoughts about their bodies at all times. For some women in the WLM and beyond, the personal act of dieting – often seen as an individual woman worrying about her weight – was reflective of women’s broader political inequalities under patriarchy. While some feminists theorized about the “thin-ideal,” others mobilized based on their own intersecting experiences of sexism and fat discrimination (Cooper 2008; Simic 2015). According to Simic (2015), fat activism in the United States emerged in the late 1960s alongside the radical politics of the WLM and the New Left. She explains that early fat-acceptance communities were mixed-sex and comprised of “fat” women and men, including male partners of the female members and men who considered themselves to be “fat admirers.” Lesbian and radical feminist women from the fat liberation movement, who splintered away from these early movements, differentiated themselves by questioning the sex roles and heteronormativity underlying the discrimination of “fat” women. Despite being grounded in the activist traditions of the WLM, however, many women in the fat liberation movement felt disappointed by other feminists who refused to question the origins of their fear of fat or why they strived for the thin-ideal. Reflecting on her experience of organizing a fat politics workshop at a lesbian conference in the late 1970s, Lisa Schoenfielder (Schoenfelder and Weiser 1983, pp. xviii–xix), for example, recounts that “only four women showed up, and one of the four thought we were a diet group.” She
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concludes that, “it was clear to me then that talking about fat oppression was a threatening idea to most women, regardless of their size.” For women with larger bodies in the WLM, introducing fat-hatred as an axis of women’s oppression was not without its challenges, especially in spaces such as the Women’s Studies classroom. In her chapter “I’ll die for the revolution but don’t ask me not to diet,” professor of Women’s Studies Esther Rothblum (1994, p. 53) describes the general lack of interest in the politics of weight in the feminist classroom, arguing that when her colleagues mentioned weight discrimination as a women’s rights issue, “the students did not believe that this had anything to do with feminism.” As Rothblum (1994, pp. 53–54) went on to explain, “feminists have fought for women’s rights in many arenas, including women’s rights to control their bodies. Women’s body weight has yet to be included in this fight.” For some, focusing specifically on “fat,” and theorizing the experiences of “fat” people, has been achieved through a combination of activism and feminist pedagogy. In the last five decades, activists in the fat-acceptance movement have focused variously on challenging the structural factors that lead to fat discrimination (e.g., Haney et al. 2021), developing communities both on- and offline to support one another (e.g., Maor 2013), and subverting the negative meanings associated with the label “fat” (e.g., Cooper 2008; Saguy and Ward 2011). Many of these voices have been reflected in feminist and fat liberationist discussions in academic discourses. According to Watkins et al. (2012), the emergence of Fat Studies – akin to Women’s Studies – represents the introduction of “fat” people’s voices in academic institutions and, therefore, the acknowledgment of their lived experiences as women with larger bodies. In most Fat Studies subjects, students are encouraged to reflect on their knowledge of “fat” and on academic materials about body weight, shape, and size (Watkins et al. 2012; Watkins 2016). As such, Fat Studies – like Women’s Studies – has in some instances been strongly predicated on the personal experiences of both educators (e.g., Fisanick 2007) and students (Watkins et al. 2012), as well as the mixture of “experiential and analytic ways of knowing” (Watkins 2016, p. 162). The contributions of feminists and fat activists and scholars have played a strong part in shaping emerging weight paradigms of health.
4.2
Health Professional Opposition to Diet Culture: Lived and Learned Experiences
The emergence of the weight-inclusive health professional has been informed by a combination of scientific evidence and the lived experiences and activism of women with larger bodies. This includes the experiences of health professionals who have experienced dieting and/or disordered eating, and those aware of the important role their own relationships with food and eating play in the healthcare relationship (Calogero et al. 2019; O’Hara and Taylor 2014; Willer 2021). In this chapter, it is argued that the lived experiences of women – some of whom are health professionals
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– have led to paradigm-shifting perspectives on weight and health in the health sciences. This includes the adoption of pedagogical approaches that have been utilized by feminists and fat activists to advance women’s liberation. While feminist educators have challenged the androcentric and weight-focused biases found in the arts and health sciences by foregrounding the importance of lived experience, health professionals have also played a part in shaping the way that weight is understood based on the lived experiences of women. Many of these health professionals and scholars have drawn from the advocacy and activism of feminist and fat studies educators, who have emphasized the importance of “fatten[ing] up . . . understanding[s] of the complex factors associated with weight, and rethink[ing] some of the assumptions undergirding” dominant biomedical approaches (McPhail and Orsini 2021, p. 399). For many health professionals, this groundbreaking work has been achieved in the shadows of the otherwise dominant “weight-centric” approach. A common staple of the biomedical and public health curriculum, the “weight-centric health paradigm” (WCHP) refers to “the placement of body weight at the centre of discourse about health” (O’Hara and Taylor 2014, p. 272). Those who promote the WCHP see health as a series of lifestyle choices that individuals make, and “obesity” as a global burden of disease. As such, they prescribe various weight-loss methods – such as shakes and restrictive diets – as a primary goal of treatment, with an underlying assumption that weight can be controlled (Tylka et al. 2014). As Hunger et al. (2020) explain, despite offering an oversimplified perspective on the relationship between body weight and ill health, this approach is dominant in health promotion policies all over the world, especially in Western countries such as the United States, Canada, and Australia. In contrast, over the last couple of decades, the emergence of “weight-inclusive” (sometimes referred to as “weight-neutral”) approaches have shifted the focus away from weight loss and onto the promotion of health. As Tylka et al. (2014) suggest, weight-inclusive approaches are not focused on weight-loss as a health outcome, but rather, appreciate that bodies come in a variety of shapes and sizes, and foster a process-focused approach that sees well-being as dynamic rather than fixed. Those who promote weight-inclusive approaches to health also acknowledge the many potential psychological harms associated with seeing weight-loss as a desirable health goal, such as the risk of developing yo-yo dieting or disordered eating. As Calogero et al. (2019) point out, weight-inclusive approaches see health on more than just a physical level; rather, they perceive health as a social justice issue for many women and girls. Health professionals have drawn on forms of critical pedagogy – such as those advanced by feminists in the 1970s and those adopted in Fat Studies classrooms today – to challenge students in the health sciences to be aware of their own biases and misconceptions about weight. In their chapter for The Fat Pedagogy Reader, for example, Ward and colleagues (2016, p. 81) discuss the challenges of “work[ing] within the very structures that produce and reinforce dominant discourses of health.” They describe encouraging students to reflect critically on their own experiences and opinions regarding weight, but also adopt what Boler and Zembylas refer to as “pedagogies of discomfort.” Much like Women’s Studies classrooms that
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encouraged entry into the “wild zone” of contentious conversation (Silverman 2000), weight-inclusive classrooms encourage students to “challenge dominant beliefs about ‘obesity’ [by] working to elicit feelings of discomfort that might compel students, teachers, and health professionals to consider their own biases and discursive truths” (Ward et al. 2016, p. 82). It is the interrogation of one’s own biases and feelings of discomfort – coupled with the sharing of one’s own experiences of body dissatisfaction – that helps merge the traditionally rigid boundaries around lived and learned (i.e., the training taught to health professionals) experiences. In some instances, this process has involved questioning if one’s health advice – as a health professional – is informed by the internalization of diet culture. In their article on weight-inclusive approaches in psychotherapy, Calogero et al. (2019, p. 19) state that being aware of one’s own misconceptions about weight and health before discussing the issue with clients is of central importance: Our personal perspectives on weight and weight loss will influence how we view our clients and how we talk to them about weight, their bodies, and their well-being. We urge therapists to be cognizant and steer clear of the exaggerated warnings about the “obesity epidemic”, instead of repeating them.
Calogero et al. (2019, p. 21) further state that this process often involves emphasizing “body appreciation, self-compassion and self-care. . . We, clients included, cannot liberate ourselves if we continue to neglect and loathe ourselves.” The merging of lived and learned experience has also been reflected by dietitians who have adopted a weight-inclusive approach to their practice. As Australian dietitian, Fiona Willer (2021) explains, “I came to dietetics as a second career and as a means to treat my own eating disorder – one that I wasn’t even aware was an eating disorder at the time” (n.p). For Willer (2021), adopting a weight-inclusive lens required paying attention to her own feelings and behaviors, seeking treatment for her eating disorder, and being cognizant of the weight-bias inherent in much of her existing dietetics training. In these examples and others like them, the merging of women’s lived experiences, with the learned experiences of their training as health professionals, reflects the rich legacy of feminists and fat activists, and the project for women’s liberationists and feminist health advocates to honor women’s lived experiences as rich sources of health knowledge.
5
Conclusion and Future Directions
This chapter looked at the significant impact of feminist pedagogy on the health sciences, as well as its origins in the broader Women’s Liberation Movement. It emphasized that feminist pedagogy is grounded in women’s lived experiences under patriarchy and that these experiences play an important role in advancing women’s health by honoring their voices as sources of knowledge. While early feminist discussions were critical of health professionals and their dismissal of women’s
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experiences, over the last five decades, women have entered the health sciences in greater numbers. As a result, feminist pedagogies have played a part in informing new generations of female health professionals, some of whom have merged their lived experiences of women living under patriarchy with their learned experiences as health professionals. One strong contemporary example of the merging of women’s lived and learned experiences has come from health professionals and educators who promote weight-inclusive approaches to healthcare. These health professionals have reflected on their own experiences of body dissatisfaction and disordered eating, and incorporated this knowledge into their teaching and practice. Inspired by feminists and fat activists who have challenged diet culture for decades, weight-inclusive health professionals offer a novel and promising way of offering care with a woman’s lived experiences at the forefront of the healthcare relationship. Future efforts to prevent diet culture should focus on the significance of the lived experiences of health professionals in addition to their learned experiences as healthcare providers. This research would complicate the seemingly neat divisions between factions of different communities in the “anti-diet movement”, and emphasize the intersecting experiences women have in relation to diet culture messages without minimizing differences in power and privilege between women. Additionally, future research on the “anti-diet movement” should focus on the historical and continued significance of feminist and fat liberationist contributions to women’s health research, including the diverse voices that have emerged from the movement over the last five decades. These perspectives help to contextualize and add voice to the otherwise biomedical grounding of the weight-neutral approach to health.
6
Cross-References
▶ Critical Public Health ▶ Feminist Methodology ▶ Gender Theory and Global Public Health ▶ Social Justice and Global Public Health Funding This work was funded by Dr Jovanovski’s Discovery Early Career Researcher Award from the Australian Research Council [DE200100357].
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Human Rights and Global Public Health Ann Taket
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Universal, Indivisible, Interrelated, Interdependent, and Inabrogable: Key Features of Human Rights . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Instrumental Value of Human Rights in Global Public Health Policy and Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Rights-Based Approaches . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 JASS: Just Power . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Working with a Human Rights-Based Approach to Psychiatry . . . . . . . . . . . . . . . . . . . . . . 3.4 Education for All Young Women in Sierra Leone . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Protecting the Wild Coast, South Africa . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 Human Rights-Based Approaches to Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter explores the instrumental value of human rights to global public health policy and practice. It begins with a brief overview of the history of human rights and the complex networks of human rights systems at various levels created since the Second World War. Global public health is understood as aiming to reduce health and social inequity and injustice, including through work on the social, cultural, and economic determinants of health. The notion of rights-based approaches is introduced and their use for advocacy in global public health policy and practice is explored. Case studies drawn from around the globe illustrate both successes and challenges. The first, JASS, a feminist movement support organization, operates in three regions around the globe. The second examines the reshaping of psychiatric care in a region of Sweden. The third and fourth case A. Taket (*) School of Health and Social Development, Faculty of Health, Deakin University, Burwood, VIC, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_28
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studies both look at the use of courts, to support education for all young women in Sierra Leone, and to defend livelihoods and cultural and spiritual rights in South Africa. The fifth case study looks at rights-based approaches in development, examining two programs in India. The chapter concludes by looking to the future and the challenges posed by climate and ecological emergencies, including the current pandemic. Keywords
Human rights · Rights-based approach · Participation · Agency · Empowerment · Intersectionality · Climate emergency · Inequity
1
Introduction
Although current human rights systems only came into existence after the Second World War, notions of human rights can be identified throughout thousands of years of human history and within all the world’s major religions (Levinson 2003). de Baets (2015) and Cushman (2012) offer a detailed exploration of this history and of different views about the philosophical foundations of human rights. As de Baets (2015) discusses, within Western societies, for centuries the concept of human rights or even more specifically the “rights of man” covered only restricted subgroups of humans, usually taxpaying male citizens. Individuals and groups campaigned for the rights of other groups, such as women and slaves. Some other “vulnerable” groups did receive attention through a variety of treaties, but these did not formally recognize the entitlements included as human rights. In the founding charter of the United Nations (1945), the three pillars of UN operations were identified as: human rights; peace and security; and development. The current international human rights system began its life in 1948 (Mertus 2009). Across the globe, there are networks of different human rights systems at global, regional, national, and subnational levels. More detailed coverage of the different levels of human rights systems and their functions is given in McKay and Taket (2020). Some examples appear in the case studies later in this chapter. Respect for human rights and dignity are established as general obligations for all member states of the UN in the UN charter. In 1948, the General Assembly of the UN adopted the Universal Declaration of Human Rights, UDHR, (UN General Assembly 1948). A declaration does not have the legal standing of a treaty, so work began on developing more explicit human rights standards together with specific monitoring and reporting mechanisms. In 1966, after an extended period of development two International Covenants were adopted, the International Covenants of Civil and Political Rights (ICCPR), and the International Covenant of Economic, Cultural, and Social Rights (ICESCR). The UDHR together with the ICCPR and ICESCR are referred to as the “International Bill of Human Rights.” Since 1966, work on human rights for particular population groups and issues has continued, resulting in other human rights instruments within the UN system. There are nine core international human rights instruments, each with a committee of
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experts to monitor the implementation of the treaty provisions in the countries that have ratified the instrument. Some of the treaties are supplemented by optional protocols dealing with specific concerns.
2
Universal, Indivisible, Interrelated, Interdependent, and Inabrogable: Key Features of Human Rights
Human rights are founded on respect for the dignity and worth of each person. They are universal, meaning that they apply to all people, without discrimination, and without exception. They are also inalienable, which means that no one can have their human rights taken away. However, human rights can be limited in specific situations. For example, the right to liberty can be limited if a person is found guilty of a crime by a court of law. Another example, particularly relevant in the context of pandemics, is that rights to freedom of movement among others can be restricted in order to protect public health. This is considered further below. A distinction is also made between absolute and relative rights. Absolute rights are those rights where no restrictions or limitations may be placed on them, even if argued as necessary for the achievement of some public good. Absolute rights include: the right to be free from torture, slavery, or servitude; the right to a fair trial; and the right to freedom of thought. Note that the right to life is not absolute, this can be seen as a concession to the number of countries still having the death penalty available under law. It is also important to note that the right to freedom of thought or opinion and the right to hold any opinion does not include the unlimited right to free expression of opinion. Free expression of opinion or free speech is qualified by restrictions or limitations that are provided by law and that are necessary for (a) respecting the rights or reputations of others, or (b) the protection of national security or of public order, or of public health or morals. This illustrates the complex interdependence that exists between the achievements of rights of different groups within the same community. Specific guidance on when rights can justifiably be restricted is summarized in the Siracusa Principles (ECOSOC 1984), see Box 1. Box 1 The Siracusa Principles
Rights can be restricted if all of the five criteria below are met, and the restrictions are of limited duration and subject to review and appeal: • The restriction is provided for and carried out in accordance with the law. • The restriction is in the interest of a legitimate objective of general interest. • The restriction is strictly necessary for a democratic society to achieve the objective. • There are no less intrusive and restrictive means available to reach the same objective. • The restriction is based on scientific evidence and not drafted or imposed arbitrarily; i.e., in an unreasonable or otherwise discriminatory manner.
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Perhaps the most powerful feature of human rights is the notion of universality; human rights are the rights of all human beings. The universality of human rights implies that human rights are fundamental to every type of society. Individuals may exercise different rights, or exercise the same rights differently, depending on which group they belong to within society. Relevant different groups include women and children, as well as groups defined by culture, ethnicity, or religion. Even if the form or content of human rights changes over time, the principle of their universality remains constant, a strong statement supporting social justice. Individual human rights do not exist in isolation from each other. Human rights as a set are indivisible, interrelated, and interdependent. There are several different points to appreciate here. Firstly, it is insufficient to respect some human rights and not others. If one right is violated, this will often affect respect for several other rights. Rights do not, however, always reinforce one another positively. Sometimes, they can complement one another; at other times, there can be tension or conflict between them. Sometimes, they are in direct contradiction; for example, the right to a particular cultural or religious practice for one group may clash with the right not to be discriminated against on certain grounds for other groups. Tensions between rights may also occur when they are effectively in competition with each other for limited resources, for example, the rights to a healthy environment, education, health care, or welfare benefits. A further feature of human rights is that they are inabrogable, meaning that they cannot voluntarily be given up or traded for other privileges. Intersectionality is also important. Intersectionality emerged from black feminist, Indigenous feminist, third-world feminist, queer, and postcolonial theories. The term was first used by American sociologist Kimberlé Crenshaw (1989). Intersectionality demands an examination of rights beyond individual factors such as biology, socioeconomic status, sex, gender, and race, to focus on relationships and interactions between factors and across multiple levels of society. When the lens of intersectionality is used to examine the human rights of specific individuals or groups, the factors that mean some groups have poorer access to human rights can be examined within the context within which those individuals/groups exist. Such an examination also allows for the investigation of the role of power and influence from governments, policymakers, families, and communities, among others, in exploring the structural influence of discrimination and its role in the prevention of some groups achieving their human rights (Kapilashrami and Hankivsky 2018).
3
The Instrumental Value of Human Rights in Global Public Health Policy and Practice
Since the late twentieth century, a growing body of work has demonstrated the importance of a human rights approach within disciplines concerned with seeking reductions in health inequities. The earliest significant body of work using rightsbased approaches (RBAs) for health policy advocacy purposes was in the field of HIV/AIDS, where the work carried out demonstrated the power of rights-based
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argumentation in securing appropriate treatment and resources for people living with HIV/AIDS. McKay and Taket (2020) summarize the early stages in this work covering the 1990s up to 2001, identifying the important role of NGOs and public health/human rights activists in the process (’t Hoen 2005). Stangl et al. (2019) take up the story with their systematic review of selected human rights programs to improve HIV-related outcomes covering the period 2003–2015. Their review included studies of any design that evaluated an intervention falling into one of five of UNAIDS’ key human rights program areas: HIV-related legal services; monitoring and reforming laws, policies, and regulations; legal literacy programs; sensitization of lawmakers and law enforcement agents; and training for health care providers on human rights and medical ethics related to HIV. 23 studies were included in the review involving 15 different populations across 11 countries. Most studies (83%) reported a positive influence of human rights interventions on HIV-related outcomes. The majority incorporated two or more principles of the human rights-based approach, typically nondiscrimination and accountability, and sought to influence two or more elements of the right to health, namely, availability and acceptability. Outcome measures varied considerably, making comparisons between studies difficult. The review identified encouraging evidence of human rights interventions enabling a comprehensive HIV response, yet critical gaps remain, namely, more evidence is needed to guide implementation and scale-up. Investments in the implementation and evaluation of human rights programs have been limited thus far. They call for promising interventions to be implemented on a larger scale and rigorously evaluated, noting the significant funding requirements this involves. Space precludes a detailed review of the use of RBAs across all areas of global public health. Instead, after a section summarizing some of the key features of RBAs, a series of five case studies is used to illustrate the diversity of RBA applications. The case studies, drawn from around the globe, illustrate both successes and challenges. The first, JASS, a feminist movement support organization, operates in three regions around the globe. The second examines the reshaping of psychiatric care in a region of Sweden. The third case study looks at the use of an African regional court, to support education for all young women in Sierra Leone. The fourth case study also focuses on the use of a court, within South Africa, to defend the livelihoods and cultural and spiritual rights of the communities of the Wild Coast. The fifth case study looks at rights-based approaches in development, examining two programs in India.
3.1
Rights-Based Approaches
A rights-based approach is an approach that is designed to help protect and promote rights (McKay and Taket 2020). The first thing considered here is what exactly should be understood by an RBA in global public health. WHO (2002) identifies three important purposes of an RBA: (1) using human rights as a framework for health development; (2) assessing and addressing the human rights implications of
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any health policy, program, or legislation; and (3) making human rights an integral dimension of the design, implementation, monitoring, and evaluation of healthrelated policies and programs in all spheres, including political, economic, and social. OHCHR (2006) states that an RBA must identify rights-holders and their entitlements and corresponding duty-bearers and their obligations and work toward strengthening the capacities of rights-holders to make claims and the capacities of duty-bearers to meet obligations. Singh (2010) identifies four key features or principles of RBAs: the realization of rights without discrimination; the principle of accountability to rights-holders by duty-bearers; a recognition of the importance of participation in the process; and finally, adaptation to the local context. As Potts (2010) identifies, the right to participation is central to the application of RBAs, and the inclusion of individual voices in local decision-making is central to ensuring autonomy and dignity for all (Singh 2010). Silva (2003) reports on a common understanding of an RBA to development programming achieved among the different UN agencies; this expands on Singh’s principles. Gruskin and colleagues, however (2010, p. 134), refer to this as “a lowest common denominator approach.” Nyamu-Musembi and Cornwall (2004), in their review of the different methodologies associated with RBAs in the field of development, argue that RBAs mean little if they have no potential to achieve a positive transformation of power relations among the various development actors. Bustreo and Doebbler (2020) provide a useful summary of the early history of how an RBA to health was further conceptualized through the work of WHO and discuss the particular importance of the human rights principles of participation, nondiscrimination, transparency, and accountability. There are also several different mnemonics that have been created to assist in remembering key components and principles. Curtice and Exworthy (2010) introduce FREDA (fairness, respect, equality, dignity, and autonomy) to capture what they see as the key elements in any RBA for clinical and organizational practice. PANEL (participation, accountability, nondiscrimination, empowerment, and legality) is used in the self-assessment tool created by the Scottish Human rights Commission (SHRC 2018). Other commentators such as Noh (2021) render the L in PANEL as a linkage to international human rights instruments. The principles and elements involved in RBAs are also found in statements on good professional practice as set out in professional standards, such as the third edition of UK’s Good Psychiatric Practice (Royal College of Psychiatrists 2009), and medical professional practice (Asher et al. 2007). The “Principles of the Ethical Practice of Public Health” of the American Public Health Association (Public Health Leadership Society 2002) start with a reference to the UDHR.
3.2
JASS: Just Power
Since our founding, we have always loved the ironic double meaning of “just” to communicate both the humility required of a popular educator who facilitates and organizes collective leadership and as a signal of our grounding in social justice.
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When we called ourselves “Just Associates,” we sought to play up the fact that we are fundamentally a “community of practice” – a network of dedicated activists, scholars, and popular educators who shared political histories and a mission – and secondarily an organization because we had doubts about joining the “non-profit industrial complex.” 17 years later, we are a transnational web of multiple organizations, partners and allies in many countries and regions – something we never imagined. https://justassociates.org/whowe-are/just-power/
The first case study illustrates the work of an evolving organization, as summarized in the quote above taken from their web page. It is particularly interesting as an organization rooted in and led by the Global South, which positions itself as a feminist movement support organization. It works with five strategies: develop women leaders; build cross-movement networks; amplify grassroots feminist stories; document activist insights; and, influence policy and practice. As their vision makes clear, human rights are central to their work: JASS is guided by the vision of a just, equitable, and sustainable world that centers the care of people and the planet. The social transformation we want to see requires deep shifts in the structures and dynamics of power so that all people can live together with freedom and dignity. We work towards a world that protects the rights of all people, regardless of who they are, where they live, or what they believe. We believe in deep democracy in both the personal and public spheres where all people respect their differences, find common ground, and participate without fear in the decisions that affect their lives. https://justassociates.org/who-we-are/ vision/
One of the reasons for selecting this particular organization as a case study is their extensive documentation of their strategies, the underlying theory of change, and resources on their website as well as a few publications in the academic literature. Veneklasen and Khan (2012) discuss the principles underlying JASS’ strategies and forms of organizing that can fuel the development of, and support for, alternative economic arrangements that respect the rights, dignity, and interconnectivity of people and the planet. Across the globe, JASS is organized regionally: in Mesoamerica, Southeast Asia, and Southern Africa. Teams of local activists with on-the-ground organizing experience and relationships with social movements lead each of the regions. Work in the different regions develops according to locally established priorities. Global teams located in the Global North as well as South coordinate strategies for cross-regional and international learning, advocacy, solidarity, and communications. One example of work arising from JASS’ ongoing learning and analysis from cross-movement and cross-border gatherings is contained in the online platform, Defending Rights in Hostile Contexts, co-created with the Fund for Global Human Rights (https://www. jass-fghr.org/power-and-protection). In Mesoamerica, JASS works particularly with Indigenous and rural women as well as other women human rights defenders, who are confronting corruption, political violence, and protecting their land and communities from the violence of extractive industries. JASS strengthens the leadership of women and gender justice
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activists through its feminist movement builder schools. JASS also provides ongoing support for safety and support networks including the Mesoamerican Women Human Rights Defenders Initiative (https://im-defensoras.org/en/)— an activist network that JASS helped found. In Southeast Asia, a context of rising fundamentalism and authoritarianism poses considerable risks for feminist activism and activists. Intergenerational learning opportunities have been used to develop the leadership of young grassroots women activists and build cross-issue alliances that bring together urban and rural, workers and land defenders, labor rights, and LBT activists. The Indonesian Young Women’s Activist Forum (FAMM) is a nationwide (across 30 provinces), grassroots activist support network made up of 350+ young rural women organizers (young, LBT, indigenous, farmworkers, and factory workers) who are challenging taboos on sex and sexuality and defending their rights and resources. One example of FAMM’s work used creative strategies, such as working with young religious women, and at large religious conferences, to reinterpret the Koran’s teachings to counteract fundamentalist messages on sex, sexuality, and women’s roles. In Southern Africa, women’s bodies have been put at the center of the movementbuilding strategy. Here, as in many other places, women bear the brunt of violence and inequality of all kinds – from second-rate HIV treatment to political upheaval to gender-based violence, economic insecurity, and discrimination. JASS’ “heartmind-body approach,” puts women’s well-being at the center of women’s organizing and movement building. Dudziro Nhengu from Women Mediators across the Commonwealth (WMC) explains: We can only change men’s mindsets by firstly changing the way we relate with each other as sisters, activists and feminists and also by changing our modes of activism for better partnerships, for creating safe spaces where we can meet and brainstorm and strategize on how to influence court process, laws and policies that work, then we can begin to talk about changing mindsets. We can invite young women and girls to this space and give them an avenue to speak and voice out what they do not normally talk about, and we will be shocked to discover that a lot of girls have been bottling up cases of abuse for not knowing what to do and who to tell. This space can also be strategic for simply checking in on each other as women, sharing problems, discussing them and giving each other hope, whilst renewing our bodies for the next day.
JASS works to support women to unleash the knowledge, creativity, and tenacity born of lived experience. This approach enables women to recognize and respect differences, forge common ground, and harness their collective power in networks to advocate for basic safety, services, and healthcare. The JASS mobilization fund (JMF) is an innovative financial crisis support mechanism for feminist movements. This was used to support women’s networks to enact localization strategies in response to COVID-19. Okech et al. (2021) demonstrate how this approach enabled the women’s collectives and networks supported through the JMF to develop contextually relevant responses that challenged patriarchal structural barriers heightened by COVID-19. Localization approaches that center feminist movements led to actions that were informed by a robust gender power analysis thus reducing the risks associated with gender-neutral
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approaches that ignore gendered impacts of crisis. This contrasted with dominant humanitarian responses that de-center feminist movements, local knowledge, and expertise. The JASS case study illustrates the application of rights-based approaches to locally relevant issues across the entire spectrum of social, economic, and cultural determinants of health, including the availability and accessibility of health services. The next example is more focused in both its scope and its geography, looking at an RBA in psychiatric care in a region of Sweden.
3.3
Working with a Human Rights-Based Approach to Psychiatry
The second case study draws on a report on the process of applying an RBA to psychiatric care in Gothenburg, Sweden, and examines how the work proceeded over 9 years from 2011 to 2020 (Broberg et al. 2020). The work focused on Psychosis Care Chain Northeast, comprising an outpatient clinic providing voluntary care and an inpatient clinic providing both voluntary and compulsory care. The outpatient clinic serves about 500 patients from northeast Gothenburg. This part of the city has more than 100,000 residents from more than 100 countries. It has a slightly younger population, with lower income, education, and employment levels than the rest of Gothenburg. A particular stimulus for working with psychiatry was that coercive measures that challenge human rights are in use, and in their reviews of Sweden’s compliance with human rights, the United Nations Committee on the Rights of Persons with Disabilities and Committee on the Rights of the Child have criticized Sweden for using too many coercive measures in psychiatry and for having insufficient documentation in this area. While the regulations in relation to psychiatric care are in accordance with human rights standards, their application does not always adhere to standards. An initial period saw important work carried out to produce two sets of guidelines for the RBA, one targeted at rights-holders and the other at duty-bearers. The RBA used was structured using the UN’s four guiding principles of: dignity and empowerment; equality and nondiscrimination; participation and inclusion; accountability and transparency. Work began in Psychosis Care Chain Northeast in the spring of 2013. Early in the process, three service users (that is, rights-holders), as well as representatives of civil society, were invited to join the work. The working group consisted of service users, health care professionals, managers, representatives from two user organizations, and civil servants from the department for human rights. The work was also followed by two independent researchers. The makeup of this group proved very important. The exact composition of this group changed over time, but always retained its diversity in terms of rights-holders and duty-bearers. Below, just a sample of the impacts obtained is discussed: the use of coercive measures; empowerment for both rights-holders and duty-bearers; sustainability; and policy impact. One priority for work in the inpatient area was to reduce the use of coercive measures, particularly belting. Staff made a direct link between the UN’s criticism of Sweden about the use of coercion and their daily work. They firstly suggested using
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low-impact treatment to reduce coercive measures. They also identified that unnecessary rules and procedures existed in the ward that did not fill any direct care-related function but instead were mostly intended to control patients and could in fact increase frustration on the part of patients, who perceived them as detracting from their autonomy and sense of dignity. Two such rules were that patients were not allowed to drink coffee after 5 p.m. and were not allowed more than one pillow in bed. Staff also observed that coercion can violate the dignity of the patient and create new traumas. Staff argued that the reduced use of coercion was important not only for patients but also for the promotion of a better working environment and health for staff. Reduction in coercion along these lines resulted in decreased staff sick leave and decreased patient behaviors that needed reporting. Staff also reported that the new way of working increased their desire to remain in their jobs. The RBA was an important part of this achievement, which was also supported by previous and present efforts and initiatives, such as person-centered care and “better care, less coercion.” Human rights became the framework for ideas and initiatives that had previously existed in the ward and became the compass for further developing these initiatives. From 2011 to 2013, staff reduced the use of belts from about four times per month to four times per year. Moreover, the rights-holders felt that the decrease in coercion was important for their improved dignity and health. As one service user stated: “That’s what human rights are about – to change things . . . it is important to realize that it is possible to work in this way and to achieve real effects or changes.” The working group discussed the need to find a balance between empowerment and self-determination, on the one hand, and coercion, on the other. They raised the dilemma that allowing some patients too much self-determination could be neglectful, which would also violate patients’ human rights and the staff’s duty to protect them. Inpatient staff also described how the RBA empowered them to question coercive measures prescribed by doctors: We are now better equipped to question coercion. We have more strength in us against the doctors. [The staff] have internalised the information [from the human rights education] ... that it risks the dignity of the patient. We’ve had good discussions even before, but now the working group is getting tighter . . . We have it in the back of our minds, how to do [coercion] in a better and more dignified way. (inpatient staff member)
Discussing psychiatry and health in relation to human rights promoted empowerment among both rights-holders and duty-bearers. All expressed the feeling that everyday dilemmas and areas discussed were not trivialities but important and real. Human rights thus conferred greater legitimacy to thoughts and ideas that had existed for a long time and offered a concrete tool for development. An important sustainable result of the RBA was a user council that was created out of the regular meetings initiated for rights-holders in Psychosis Care Chain Northeast. The user council now has its own office connected to the waiting room. The office is usually staffed with someone from the user council so that rights-
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holders can ask questions, make comments, or perhaps become involved in the user council. The work also had a wider policy impact. In 2017, the region utilized some of the experiences from the work in the production of its strategic action plan for human rights. The lessons learned from the work are similar to those found in other studies of RBAs at the organizational level (Picard 2005; Pollock 2016; McKay and Taket 2020): the importance of paying attention to power and privilege; committed senior management, enthusiasts, and strategic partnerships; the importance of broad representation, meaningful involvement of rights-holders and respectful dialogue with duty-bearers; time for reflection. These features are also reflected in the work of JASS illustrated above and described in Veneklasen and Khan (2012).
3.4
Education for All Young Women in Sierra Leone
The next case study presents an example of the use of a regional human rights system to challenge the restriction of the right to education, an important determinant of health. The Sierra Leonean non-profit, Women Against Violence and Exploitation in Society (WAVES), challenged a policy banning pregnant young women from mainstream education as a violation of their rights under the African Charter and several other regional and international human rights instruments. The Economic Community of West African States (ECOWAS) Community Court of Justice ruled in favor of WAVES. The Court’s judgment was delivered in December 2019. Information on this case study is summarized from the caselaw database of ESCR-Net, the International Network for Economic, Social, and Cultural Rights (https://www.escr-net.org/ caselaw/2020/women-against-violence-and-exploitation-society-waves-v-republicsierra-leone). An outbreak of Ebola in Sierra Leone forced schools to close for 9 months over the period 2014–2015. One consequence was a significant spike in pregnancies among teenage young women, with rates increasing by 65% in some areas. The Minister of Education, Science and Technology at the time publicly stated that pregnant young women would not be able to attend mainstream schools while they were pregnant to avoid adversely influencing their peers. This statement revived a policy banning pregnant young women from mainstream schools, with the government establishing separate limited schools for them that met only 3 days per week and taught only four subjects. Stigma against pregnant young women increased and this, coupled with the financial strain on them and their families, prevented many of them from returning to school after giving birth. WAVES challenged this rule as a violation of rights under eight different human rights instruments: the African Charter on Human and Peoples’ Rights; the African Charter on the Rights and Welfare of the Child; the Protocol to the African Charter on the Rights of Women in Africa; the United Nations Educational, Scientific and Cultural Organization Convention against Discrimination in Education; the Convention on the Rights of the Child; the Convention on the Elimination of Discrimination against Women; the International Covenant on Economic, Social, and Cultural
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Rights; and the Universal Declaration on Human Rights. WAVES argued that the ban violated young women’s right to education and their right to be free from discrimination. WAVES further argued that lifting the ban and taking measures to support pregnant school students in their education would produce better outcomes overall. WAVES sought relief in the form of six different tangible outcomes: (1) a declaration that the ban was unlawful, discriminatory, against the best interests of the young women, and a violation of their rights; (2) revocation of the ban; (3) implementation of programs that address teen pregnancy by educating the public on sexual and reproductive health; (4) implementation of programs aimed at reversing the stigma around pregnant young women; (5) implementation of strategies to allow teen mothers to remain in school; and (6) integration of sexual and reproductive health into mainstream school curricula. After determining that it had jurisdiction, the Court turned to the issues of whether there was evidence of the ban being implemented by the State, whether it was discriminatory, and if so, what relief was appropriate. Sierra Leone argued that the media statement by the then-Minister did not qualify as an act of the State. The Court however found that it was attributable to the State because the statement was made while the then Minister was acting in an official capacity, and afterward the government did nothing to stop the ban from happening. The Court found that the statement violated human rights norms binding on Sierra Leone. Utilizing the definitions of discrimination in several of the international instruments mentioned above as applied to the facts of the case, the Court found that Sierra Leone’s ban on pregnant young women attending school was discriminatory because there was no reasonable basis to single out the pregnant young women for differential treatment. The Court granted all the requested remedies, except for the programs addressing teen pregnancy. Although Sierra Leone has officially overturned the ban, public support for the ban means that the stigma is likely to continue. Sierra Leone is yet to implement the other orders in the judgment apart from the overturning of the ban. This illustrates a common problem in ensuring full implementation of recommendations and points to the importance of follow-up mechanisms. Within the region of the Americas, the Inter-American Court of Human Rights produces comprehensive annual reports; these contain a summary of cases and petitions and progress in implementing recommendations contained in judgments. These provide a way of following up and monitoring, providing regular pressure on countries to implement recommendations. The next case study also focuses on the use of courts, this time in a single country rather than a region, and making use of the statements on human rights in the country’s constitution.
3.5
Protecting the Wild Coast, South Africa
Singh et al. (2007) demonstrate the different ways that the South African constitution has been used in the court to protect the right to health and access to appropriate services. This case study presents an example of the protection of other rights, and important determinants of health, namely, the right to participation, employment,
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and to the enjoyment of culture and spirituality. The Wild Coast of South Africa, the traditional home of the Mpondo people, is a section of the coast of Eastern Cape province. At issue was the seismic survey planned by multinational Shell. A coalition of local groups came together with Greenpeace to oppose the survey going ahead, using the courts to argue that the survey violated their constitutional rights (information from the Greenpeace website). The applicants’ case was based on three different aspects. First was the cultural and spiritual harm that the survey would cause; second the threatened harm to marine life; and third the negative impact of the harm to marine life on the livelihood of small-scale fishers. In its answering affidavit, Shell elected not to deal with the threat of harm to the applicant communities’ cultural and spiritual beliefs, the applicants’ allegations in that regard were accordingly undisputed. The applicants provided extensive expert evidence on the threat of harm to marine life, which established that, without intervention by the court, there was a real threat that the seismic survey would irreparably harm marine life. Against the acceptance of the body of expert evidence, Shell’s denial that its activities will have an adverse impact on marine life could not be sustained. The judge was satisfied that the applicants have established a reasonable apprehension of irreparable harm to marine life. In addition to the harm to marine life, the applicants have also established how the seismic survey will firstly, negatively impact the livelihood of the fishers, and secondly, cause cultural and spiritual harm. In December 2021, an interdict was granted, meaning Shell must immediately cease the seismic survey. In making this judgment, the judge said that Shell was under a duty to meaningfully consult with the communities and individuals who would be impacted by the seismic survey and that based on the evidence provided, Shell failed to do so. This clearly recognizes the communities’ right to (meaningful) participation. In the case of the applicant communities who hold customary rights, livelihood rights, including fishing rights, were also recognized. Shell’s failure to consult these communities and understand how the survey may impact upon them meant that the exploration right had been awarded on the basis of a substantially flawed consultation process and was, thus, unlawful and invalid. The applicants’ right to meaningful consultation constitutes a prima facie right that deserves to be protected by way of an interim interdict. Nonhle Mbuthuma, from the Amadiba Crisis Committee, one of the organizations involved summarizes: This case is about making sure that profit making does not override human rights. It is about making sure that the voices of rural communities are as important as the voices of the elite. The case is not just about Shell – it is about both protecting human rights and animal rights which are both enshrined in the constitution. As coastal communities we have relied on the sea for centuries – and we are glad that the judge has recognised that our ocean livelihoods must not be sacrificed for short term profit.
The struggle, however, is not completely over, Shell immediately lodged an appeal against the decision. This illustrates a frequent challenge to rights-based approaches utilizing the courts, the time taken and the need for affected communities and supportive NGOs to raise funds to support lengthy and multiple court actions.
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Human Rights-Based Approaches to Development
The final case study discusses human rights-based approaches to development. Noh (2021) offers a review of 29 diverse studies carried out in developing countries between 2015 and 2019. Overall, the right to health was a focus for many of the studies, also a focus on programs for marginalized groups. Principles of participation and empowerment were widely highlighted. All studies reported positive impacts at individual, program, structural, and/or societal levels; positive changes at individual and program levels were more often reported than those at societal and structural levels. Studies also highlighted the influence of contexts and development players as well as tensions between conflicting rights. To illustrate the diversity of the studies included, a brief overview is given of just two of the included studies, focusing on rights connected with the determinants of health rather than health services. Both studies took place in India. O’Leary (2017) examined at programs in two NGOs in India, examining how grassroots monitoring and evaluation were used to support the programs’ operation. Here, only one of the programs will be considered, a program that aimed to empower women through microfinance administered through self-help groups. The study reports that positive outcomes included increased awareness, changes in living conditions and social status, and involvement in social action, demonstrating impact at individual, program, and societal levels. The Programme Coordinator for Women’s Empowerment described the self-help group structure as representing: the platform to organise women for their empowerment and rights fulfilment. And financial sustainability is one of the main aspects of this. If they [women] are financially sustainable, they can decide for their own [sic], for their health, the education of their children . . . . and their united action towards developing society. (O’Leary 2017, p. 30)
The women developed their own success criteria and used these to appraise the microfinance scheme and its operation. This allowed them to establish narratives that highlighted the outcomes of the program. The following “chain of impact” was typical of their discussions of impact: the provision of micro-finance to women allowed them to become economically independent and competent, amass savings and credit, engage in commercially productive enterprises, afford school supplies for their children, therefore, allowing these children to remain in education longer and avoiding involvement in child labor or “early” (underage) marriage. Discussions of successful change of livelihoods among self-help group members and resulting “chains of impact” also allowed participants to trace the program to its broader societal impacts. As the Regional Manager noted, evaluating the development process in this way allowed: a great opportunity for the women to create some importance. . .women can raise their voice, women can place their demand, women can place their requirement, women can place their planning and participate in the whole evaluation and implementation process of development. (O’Leary 2017, p. 28)
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Also in India, within three districts in the state of Odisha, Mishra and Lahiff (2018) looked at the use of RBA by five NGOs in advocacy (lobbying and activism) around issues of land and livelihoods. The primary cause of vulnerability in the region was land-related vulnerability caused by man-made development projects. Outcomes demonstrated included capacity building, rights claims, and alliance building, demonstrating impact at individual, program, and structural levels. One key realization was the need for using a rights-based language in claiming rights, which was crucial to the understanding of claims as rights, and not as charity. Also important was bringing back pride in tribal customs to promote self-respect and selfempowerment. For example, one of the NGOs decided to focus on four rights-based issues to organize tribal women, namely, adivasi parichay (tribal identity), mahila adhikar (women’s rights), shishu adhikar (child rights), and jeevan jeevika (livelihoods). They express their conclusions in the following terms: While the right to land and forests was the core demand of communities, the poor found the courage to collectivise, and demand other rights, ranging from creation of infrastructural facilities for drinking water, to naming and shaming corrupt duty-bearers. NGOs linked seed-revival activities to food sovereignty, and a move away from depending on the state and the market for food. Thus, listing, saving and conserving seeds of indigenous crops were used as rights-based strategies in villages. An important strategy was the revival of traditional customs and practices to instil a pride in the youth for their common heritage, as well as to counter the increasing influence of outside religions. The concern with religious conversions emerged from their realisation that conversions led to sale of tribal lands to outsiders, and there was a need to stop that process. One of the important findings was that all development practitioners were unanimous in their approach that ‘no one must be left behind’ when rights to land and forest use are enlisted, documented and given to the state for endorsement. The list should, therefore, include those labelled as cattle thieves, migrants and landless by the state. (Mishra and Lahiff 2018, p. 822)
4
Conclusion and Future Direction
This chapter has offered an overview of the importance of human rights and rightsbased approaches to global public health. The examples and case studies discussed in this chapter demonstrate the range of positive impacts that can result from the use of RBAs, and the diverse range of contexts in which they have proved useful. This does not mean that RBAs represent some sort of “magic bullet,” a panacea for all ills. As some of the examples discussed in Picard (2005) and McKay and Taket (2020) illustrate, not all contexts or situations are suitable for advocacy that is explicitly based on human rights. The importance of power relations has been highlighted in most of the case studies, calling for explicit attention to an examination of these as part of any rights-based approach. This remains an important area for further development as to different methods and tools that can assist in this process. Hernández et al. (2019) analyze a range of citizen-led initiatives for the right to health of Indigenous
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populations in rural Guatemala. Their findings reinforce the value of network building and participatory monitoring, alongside persistence in demands, demonstrating the potential of a collective power to hold authorities accountable for health systems failures. Similarly, the review by Bustreo et al. (2013) of academic literature on participation, human rights, and women’s and children’s health found evidence of an association between women’s participation and improved health and healthrelated outcomes and drew attention to additional RBA principles alongside participation. In concluding this chapter, it is important to acknowledge the major challenges posed by the current context: the Anthropocene, the most recent period in Earth’s history where human activity started to have a significant impact on the planet’s climate and ecosystems. The Anthropocene is manifest in terms of the current climate emergency and the resulting extreme weather events, the crisis of extinction and biodiversity loss, and in terms of the acceleration in the frequency of pandemics with a zoonotic origin including the current COVID19 pandemic. The climate and ecosystem emergencies present interlinked direct and indirect threats to human health and increase health inequities (GPMB 2021; Watts et al. 2021). The sixth assessment report of the United Nations Intergovernmental Panel on Climate Change (IPCC 2021) together with the roadmap produced by the International Energy Agency (IEA 2020) make it clear that in order to keep global warming to a maximum of 1.5 degrees, there can be no new fossil fuel projects, and urgent action is required in the years to 2030. Governments in the Global North are ignoring this, while those in the Global South are already experiencing worsening effects of climate change. Increasingly, struggles for health and the determinants of health will be caught up in struggles to move away from fossil fuels and combat environmental degradation and loss of livelihoods. As the case studies above illustrate, rights-based approaches have an important role to play. It is also clear that shifts in the (capitalist) system are needed to achieve a reduction in health inequities, sustainability, and net zero. As Donald et al. (2020) outline, the six systemic shifts are needed to weave the specific policy changes together, and to fundamentally transform what is produced, distributed, consumed, and valued in our economies to achieve a rights-based economy.
References Asher J, Hamm D, Sheather J (2007) The right to health: a toolkit for health professionals. British Medical Association, London Broberg E, Persson A, Jacobson A, Engqvist AK (2020) A human rights-based approach to psychiatry: is it possible? Health Hum Rights 22(1):121–131 Bustreo F, Doebbler CFJ (2020) The rights-based approach to health. In: Gostin LO, Meier BM (eds) Foundations of global health & human rights. Oxford University Press, Oxford, pp 89–110 Bustreo F, Hunt P, Gruskin S, Eide A, McGoey L, Rao S, Songane F, Tarantola D, Unnithan M, Yamin AE, van Bolhuis A, Ferguson L, Halliday E, Kuruvilla S, Popay J, Sander G (2013) Women’s and children’s health: evidence of impact of human rights. World Health Organization, Geneva
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Social Determinants of Health and Global Public Health Rayner K. J. Tan and Megan Lourdesamy
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Social Determinants of Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Delineating Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Role of Social Determinants in Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Empowering Local Communities to Address the Social Determinants of Health . . . . . . . . . 6 The Way Forward . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
The social determinants of health framework provides a framework to conceptualize, measure, monitor, and evaluate the progress of social indicators that are instrumental to health, and potentially holds promise in positively impacting global public health outcomes. Nevertheless, there are limitations to this approach. This chapter begins by discussing the social determinants of health framework and charting the shift across varying approaches and paradigms in the determinants of health that have led to the acknowledgment of social factors and determinants as instrumental to health outcomes. Next, it attempts to delineate the development of a global public health framework, discuss its potential contributions and shortcomings, as well as its alignment with social determinants of health framework. It then posits how the social determinants of health framework can contribute to global public health goals. Finally, it reflects on the remaining gaps in the research on the social determinants of health in the context of global public health and articulate the way forward for research in the field. R. K. J. Tan (*) · M. Lourdesamy Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_30
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Keywords
Social determinants of health · Global public health · Decolonization · Neoliberalism · Intersectionality
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Introduction This toxic combination of bad policies, economics (unfair economic arrangements), and politics is, in large measure, responsible for the fact that a majority of people in the world do not enjoy the good health that is biologically possible. Daily living conditions, themselves the result of these structural drivers, together constitute the social determinants of health. – World Health Organization’s Commission on the Social Determinants of Health (Commission on the Social Determinants of Health 2008, p. 1)
Global public health, as an academic field and policy framework, offers scholars in global public health a lens to better understand how we can potentially address health inequities across the world. This goal is purportedly aligned with that of the social determinants of health framework, which aims to target social and structural issues as a way of closing this gap. This chapter discusses the potential contributions and limitations of these frameworks toward the goal of bridging gaps in health equity, as well as how the social determinants of health approach can explicitly contribute to global health equity. The chapter closes with discussions on the way forward and considerations for future research.
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The Social Determinants of Health
The social determinants of health framework has gained prominence in recent years, especially since the World Health Organization’s Commission on the Social Determinants of Health (WHO CSDH) began promoting a conceptual framework to better understand the impact of such social determinants in 2008 (World Health Organization 2020). The WHO defines the social determinants of health as nonmedical factors that influence health outcomes, and as “the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life” (World Health Organization 2022). The WHO further delineates these forces and systems as being inclusive of “policies and systems, development agendas, social norms, social policies and political systems” (World Health Organization 2022). However, the concept of social determinants of health did not begin with WHO’s conceptualization in 2008 (Irwin and Scali 2007). While earlier forms of epidemiology in the nineteenth century have focused on sanitary statistics and germ theory, epidemiological movements in the field of public health began shifting its analytic lens toward chronic disease epidemiology and eco-epidemiological approaches in the twentieth century, heralding the emergence of approaches that placed emphases on determinants of health beyond that of biomedical causes (Susser and Susser 1996a, b). Today, approaches to understanding health and illness are typically
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characterized by endeavors to understand the relations within and between variables at multiple levels of the socio-ecological model (Bronfenbrenner 1977). These have led to multiple, yet complementary ways of operationalizing, conceptualizing, and analyzing social factors in the context of health outcomes. Here are some examples. First, Link and Phelan (1995) “fundamental cause theory,” which argued that most research has focused on “proximal” causes and risk factors of health and illness outcomes, such as diet, physical activity, while leaving out “fundamental causes” such as socioeconomic status, which they argue shape one’s exposure to risks as well as access to services that prevent such risk or buffer the impact of such negative health outcomes. Second, there is the field of social epidemiology that serves as an analytical lens to examine how social factors shape health outcomes, with its main assumption being that each society forms its own distribution of health and disease, and that the distribution of health and disease in a society reflects the distribution of advantages and disadvantages in that society (Berkman et al. 2015). Finally, there is the social determinants of health framework developed by the WHO (Commission on the Social Determinants of Health 2008). The social determinants of health framework have been influential in shaping global health policies through several mechanisms. First, the CSDH have recommended several intersectoral actions on social determinants of health, like intersectoral governance, socioeconomic development, socioeconomic coverage, and environmental interventions. Together, these address political, legal, and civil society dynamics (Pega et al. 2017). Second, the social determinants of health framework has led to the adoption of several consensus statements by national governments and international organizations who have committed to action on policies that address health inequity through the social determinants. These have included the Rio Political Declaration on Social Determinants of Health adopted by the 65th World Health Association, as well as 125 members states during the WHO World Conference on Social Determinants of Health in 2011 (World Health Organization 2011), the Political Declaration on the Prevention and Control of Non-communicable Diseases adopted by the United Nations (UN) General Assembly in 2011, as well as the UN Resolution on Global Health and Foreign Policy in 2012 that called on member states to accelerate universal health coverage and address the social determinants of health through intersectoral policies (Donkin et al. 2017). In spite of the social determinants of health’s influence in global health, there have been several key criticisms of the framework. Frank and colleagues (2020) lay out several of these past critiques. First, scholars like McQueen have pointed out that inequalities have existed for a long time, and in spite of this framework, a lack of policy and political influence makes it difficult to create a sense of urgency around addressing such inequalities. Furthermore that social concepts and constructs are complex and oftentimes cannot be reduced to unidimensional concepts, and that while many interventions have focused on social determinants that are causal factors for one’s health status, few studies have sought to reduce overall ill health in society or address broader sociopolitical issues such as socioeconomic inequalities (McQueen 2009). Second, as scholars like Crammond and Carey (2017) point out, that policymaking in itself can be a normative process that should also account for
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political analysis and activity and not just health-related evidence-based approaches. And finally, scholars like Schrecker (2019) have pointed out how international trade dynamics and neoliberal systems support both economic and therefore health inequalities, therefore making action on the social determinants of health difficult and ineffective. How does the social determinants of health framework relate to global public health concepts and goals? The authors explore some of these issues in this chapter. First, they discuss global public health as a concept and the key objectives of the field. Second, they explore how the social determinants of health framework contribute to several of these objectives and enhance as well as further global public health. Finally, they discuss several gaps in the potential for the social determinants of health framework to further address these global public health issues.
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Delineating Global Public Health
The concept of global health derived from international and public health efforts and has historic roots in colonial and tropical medicine (Koplan et al. 2009), starting with colonial medicine of the nineteenth and early twentieth centuries, and then tropical medicine, and thereafter international health. These predecessors of global health reflected a focus on preserving the health of European colonial powers who sought to protect themselves from “tropical” diseases (Holst 2020). Scholars saw this as promoting the health of both the European traders as well as that of the “native,” though the goal was to serve the former’s interests. From its colonial and tropical medicine roots, Holst (2020) then charts the origins of the concept of “global health.” From colonial and tropical medicine came the concept of international health, which became increasingly accepted in the latter half of the twentieth century along with its focus on the health issues of low-income countries. The field of international health, itself being led by high-income countries and international organizations, was administered as part of their increasing commitment toward alleviating health issues in low-income countries. Aid and development were multilaterally financed by high income countries and organizations to low-income countries in the name of international health. These developments in “international health” coincided with those of public health and population health approaches, which saw a move away from individualized models of risk and ill health, but social determinants of health and other factors driving health inequalities across populations. More recently, the concept of “global health” extends these preceding concepts by illustrating how population health is increasingly globalized, and that factors affecting the health of populations around the world result from transnational factors (e.g., climate change, drug supply chains) (Holst 2020). Many scholars have attempted to define global health in the context of its relevance to science and policies today. For example, Koplan et al. (2009) argue that key aspects of global health include addressing health issues that are transnational in outcomes or determinants, encompassing more than infectious diseases and
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maternal health (which was a preoccupation of its predecessors of “international health”), addressing and interacting with issues of globalization, creating equitable partnerships across countries around the world, and fostering interdisciplinary approaches. Beaglehole and Bonita (2010) have criticized this definition as being “wordy and uninspiring,” and instead argue for a proposed definition of “collaborative transnational research and action for promoting health for all,” which builds on Koplan and colleagues’ definition but they are is shorter, sharper, and more actionoriented. More recently, Taylor (2018) attempts to discuss the possibilities of what global health could mean across multiple dimensions discourses. First, its implications for the global epidemiology of diseases and the convergence of equitable health outcomes; second, the impact of globalization and other neoliberal market-oriented forces that shape health inequities and pose as major challenges to health equity; third, the relationships between domestic policymaking, global policies (e.g., foreign trade and security agendas), as well as health; and last, as a science and global field of practice and governance. Apart from what its broad objectives should be, scholars have also attempted to define the global health in the context of research and policies. Chen et al. (2020), based on the findings of an editorial meeting of the journal Global Health Research and Policy, identified global health as both a guiding principle as well as a specialized discipline in the field of public health and medicine. They discuss how while multi-country studies are typically defined as being global in nature, localized studies can also be framed with having a global perspective, global impact, or provide solutions that are relevant to global issues and policies (Chen et al. 2020). But, are there fundamental flaws in the premise of global health? Several scholars have weighed in on this. For example, some argue that given its historical roots in colonialism, the field of global health presents a paradox. Specifically, colonial and tropical medicine policies were designed with political and economic exploitation as the ultimate goal, typically by European and North American powers (Hirsch 2021). A recognition of these dynamics have led to researchers and global health practitioners calling for decolonization and the upending of power structures that stop nations from actually achieving the goals of global health equity, and for a shift away from a paternalistic rhetoric toward actual reform (Khan et al. 2021). These sociopolitical and economic disparities that shape health inequalities require sociopolitical and economic solutions, not just health solutions. In this vein, several solutions proposed by scholars include increased participation and shared leadership by local, indigenous experts and communities in low-to-middle income countries as opposed to top-down health programming, which places experts from the “Global North” above indigenous or local expertise, not just limiting resources to high-income settings, and ensuring that there is ample representation of those in the “Global South” in research grants (Khan et al. 2021). Through decolonization, local and international global health partners can work together to disrupt colonial structures and legacies that influence and restrict access to healthcare.
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Nevertheless, several barriers to decolonizing global public health remain, as articulated by Kulesa and Brantuo (2021). The authors highlighted how global health partnerships between high- and low-to-middle-income countries mirror colonial relationships. While decolonization is a necessary process to achieve equity, the processes of doing so as well as the barriers to achieving this are less well-defined. These barriers include, first, an overemphasis on intercountry relations where the authors have observed that decolonization efforts target largely only the relationships between global health practitioners and indigenous clinicians trained in Western medicine, which may undermine local expertise and knowledge. Second, another barrier is the assumption that global health practitioners need to educate host country partners instead of nurturing and multiplying local knowledge, tradition, history, and skills. Finally, there are several ethical dilemmas that arise from paradigm shifts between foreign vis-à-vis local knowledge and practices, which must be addressed to effectively drive efforts in decolonization (Kulesa and Brantuo 2021).
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The Role of Social Determinants in Global Public Health
The social determinants of health framework can contribute to the goals of global public health at two levels. First, the social determinants of health framework allows scholars in global public health to appreciate the social, political, economic, and contextual factors that underpin health inequities around the world, and at a global level, can serve as a guide for sociopolitical and economic solutions that address the root causes of health inequities. Second, the use of the social determinants of health framework provides scholars with opportunities to address structural inequities at a local level, which cumulatively also contribute to the goals of global public health. At a global level, the social determinants of health framework in the global public health literature offers an attempt to address health disparities by highlighting how nonmedical factors influence health outcomes (World Health Organization 2020). Therefore, scholars have correspondingly argued that global health should focus its agenda on social and political conditions that lead to health inequities, as well as policies to deal with them (Bell et al. 2010). Nevertheless, while the dominant discourse in global health offer technical solutions to issues of global health inequity, few have addressed how sociopolitical solutions can be adopted. A major criticism of the prevailing global approach is that there is ambivalence in WHO’s directions on how health policies should deal with health inequities and social determinants (Glasgow and Schrecker 2015). For example, while it is acknowledged that neoliberal, market-oriented dynamics should be dealt with to address inequalities, there is a tendency for a “lifestyle drift,” or the tendency for policies to start by recognizing the need to address social determinants, but end up just “drifting” downward to individual lifestyle factors (Popay et al. 2010; Glasgow and Schrecker 2015). This sentiment is echoed by scholars such as Gill and Benatar (2016) who have criticized global health discourse focusing on global political solutions and transnational reforms as being confined within market-oriented, neoliberal development models
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of global capitalism. They instead offer recommendations that touch on transformations to the political economy and health ethics as being more sustainable solutions. Gill and Benatar (2016) chart several ambitious directions on how policies and principles can be applied to achieve meaningful changes in global health. First, shifting tax regimes away from indirect taxation that hit the poor hardest, and toward more direct taxation of the rich and corporations; second, reassessing the opportunity costs of financial bailouts and instead revitalizing public and collective services and infrastructure and investments in important social purposes; third, addressing demographic shifts (e.g., a graying population) that may negatively impact fiscal and social situations for the population; fourth, developing ethical, inclusive, and democratic educational structures; and finally, rethinking the logic of dominant affluent lifestyles and finding ways of maintaining a sense of security while combating the proliferation of lifestyles associated with market-oriented contexts. What is it that needs to happen for the social determinants of health framework to effect meaningful change in global public health? Popay et al. (2010) speak more directly to the shortcomings of the framework and propose several solutions. First, this involves radical changes in local systems of governance that comprise adaptive leadership and looser partnership structures, which privilege flexible and culturally tailored solutions. Second, that policies directly reflect major causes of inequalities such as poverty, housing, and education instead of downstream factors. Third, that communities are adequately empowered to drive health decisions at the local level. And finally, shifting away from market-oriented systems that promote consumerist agendas toward welfare systems that promote social justice and reduce health inequalities. Glasgow and Schrecker (2015), in their analysis of the WHO’s 2008 Action Plan on Non-Communicable Diseases (NCDs), as well UN high-level meeting on NCDs, illustrate how we are falling short in terms of our current approaches through the social determinants of health lens. For example, they argue that while social determinants have been highlighted in the approach to addressing NCDs, these largely relate to behavioral risk factors, biological indicators, and the availability of medicine. This policy thrust focusing on a cultural-behavioral approach (Bambra 2011) to health policies undermines structural elements, which are crucial given that first, a focus on risk factors alone is scientifically incomplete; second, that socio-cultural processes have an important impact on health behaviors especially in low- and middle-income countries; third, that such approaches overemphasize individual-level approaches at the expense of population-level ones; and last, that risk factors at the individual level are mostly congruent with neoliberal conceptions of personal responsibility. At the global level, it remains to be seen if efforts can be mobilized and consolidated to tackle market-oriented systems, neoliberal conceptions of personal responsibility, and an overemphasis on individual risk factors. This is where the focus turns toward looking beyond global institutions such as the WHO, The World Bank, the International Monetary Fund, and the World Trade Organization that have “been captured by neoliberalism” (Mooney 2012, p. 383), and toward a greater community focus that emphasizes healthcare as a social institution as well as
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empowered citizens where goals of health maximization can be realized (Mooney 2012).
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Empowering Local Communities to Address the Social Determinants of Health
What can be done at the local level? Some scholars argue that global public health is after all an accumulation of local health goals, and that while global health frameworks like the social determinants of health framework may give scholars in global public health global goals, steps put in place to reach those goals need to be applied nationally and locally (Chen et al. 2020). They must “think globally but and act locally” (Chen et al. 2020, p. 4). In contrast with global health goals that are perceived to only deal with medical and health issues with a global impact, these scholars argue (as other critiques of the global health and social determinants of health policy thrust have done so) that there needs to be an understanding that global health has to approach health in regions from a ground-up perspective, recognizing that regions and nations in specific ways contribute to global health impact. It is noted that an overarching theme from the extant literature, which overlaps with the solutions provided earlier, is that civil society organizations, patients, and communities must be empowered for scholars in global public health to achieve global public health goals through addressing the social determinants of health. The authors highlight the benefits that have been addressed by the extant literature in the paragraphs that follow. How can communities and civil society be empowered? Scholars have discussed several ways of empowering civil society in addressing the social determinants of health. First is the shift away from a neoliberal conception of healthcare. Mooney (2012) argues that health reforms should situate healthcare as a social institution rather than a product of commodification and individual responsibility. They further posit that this shift away from neoliberal conceptions of health can help privilege processes that empower participatory processes and shared leadership among citizens in health decision-making. Irwin and Scali (2007), who have analyzed the historical development of global action on the social determinants of health, also argue that the efficacy and sustainability of local efforts to address the social determinants of health rely heavily on the extent to which civil society organizations are engaged in advocating for such changes. The authors reflect on how this shift toward empowering local organizations and civil society may contribute toward the recommendations at both a global and local level. Empowerment in this context would mean the privileging of bottom-up approaches instead of “expert”-driven, top-down approaches. Today the decision to engage communities should not be seen as a binary one, but rather, a question of how deep community engagement (as a continuum) is instituted in such decision-making processes. Scholars have conceptualized and operationalized levels of community engagement in multiple ways, such as in a continuum from mere outreach on one end to shared leadership on the
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other (Clinical Translational Science Awards Consortium 2011), as well as dimensions of participation that include intensity, inclusivity, and influence (Fung 2006). The process of empowering communities has benefits for ensuring that the social determinants of health and the structural inequities that underpin them are welladdressed. First, participatory approaches can in fact help diagnose upstream determinants of health and prescribe downstream policy-based interventions (Douglas et al. 2020). A narrative review on the factors that facilitate community-based participatory research in addressing health disparities and structural issues by de Sayu and colleagues (de Sayu and Sparks 2017) found four lessons learnt that can spur such partnerships. First, that all stakeholders must have a shared dedication toward understanding the social determinants of health and that academic partners must be oriented toward the underlying values of the framework; second, that community partners have a history of political participation and are attuned to local health concerns and social determinants; third, that there are mature and longer-term academic–community partnerships that address more than individual risk factors; and last, that there is government and political support for work addressing the social determinants of health. In practice, participatory health governance has shown to foster dialogue between local stakeholders and allow the public to effectively participate in policymaking processes (Rajan et al. 2019). Furthermore, with sufficient investments by policymakers in participatory processes, power can be shared with members of communities that are marginalized or underserved (Bittle 2022). Nevertheless, barriers to implementing and realizing the benefits of participatory processes in the governance of health policies still remain, which must be addressed (Kohler and Martinez 2015). Second, empowered communities can help facilitate the decolonization of global health efforts and restructure colonialist power dynamics, which in turn will help address issues of context, structure, and the overarching processes that reproduce disadvantage across policies, research, and health outcomes in local communities. Such efforts address the contexts and policies that eventually trickle down into daily living conditions in the social determinants of health framework. There are several areas of collaboration that would benefit from such processes. First, local communities can help advocate for the role of local wisdom, history, expertise, and leadership in the face of prevailing efforts to globalize public health. These are important considerations given that global health has traditionally focused on the “transfer” of scientific knowledge, which has typically been unidirectional from high-income countries to low- and middle-income countries (Eichbaum et al. 2021). While this in process in itself may have some benefits for the sharing of best practices, scholars argue that this has been done to the extent of an “epistemicide” that kills other forms of knowledge production methods and systems, especially those that are relevant to local cultures and systems (Hall and Tandon 2017). Second, local communities can also ensure that daily practices in global health partnerships are fair and mutually beneficial, which are not limited to just promoting equitable opportunities and access to resources, but promote efforts to engender a paradigm shift where local institutions in low- and middle-income countries are empowered to be leaders in global health and have the capacity to solve its own local health issues
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(Kwete et al. 2022). Overall, efforts to empower local communities by addressing power dynamics and development narratives that structure prevailing partnerships with international collaborators will help counteract deficit-oriented mentalities which reinforce such colonial power dynamics (Evert 2015).
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The Way Forward
Based on this narrative review, it is noted that both solutions offered by global public health scholars, which tend to focus on broader changes to the daily practices of global health and to global structures, as well as more localized solutions to address the social determinants of health (and in turn, global public health), should not be viewed as separate processes, but rather as having a co-constituting effect on each other. The concept of structuration by Giddens (1984) provides a sense of flow and continuity that the authors believe encapsulates the process of structural change that should take place at both a global and local level (see Fig. 1). The authors contend that an understanding of how global and local processes are linked to each other will promote an appreciation of the interaction between these dynamics. This will give scholars in global public health opportunities to learn how local processes can exercise agency and effect changes, to learn how they are constrained by broader dynamics at a global level and vice versa. The discussion on social determinants of health also raises some additional questions around gaps in existing frameworks and proposed solutions. One area that may be of concern and is less discussed is the adoption of an intersectional lens in addressing social determinants of health, and upstream factors. Intersectionality provides an analytical lens to show how multiple interlocking identities at the individual level or community level may reflect broader interconnected inequalities at the structural level (Crenshaw 1991). The personal identities held by individuals may be situated in or linked to specific social determinants of health, and these shape their experiences of health according to broader social inequalities (Collins 2015).
Fig. 1 Global and local processes in spurring global public health equity
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This has implications for recommendations. Specifically, that when empowering communities, we must not forget individuals who may be situated at these crossroads of interlocking identities. For such individuals, health-related resources and aid need to be tailored to their situations, taking into account the novel challenges that will be faced when having interlocking identities. Intersectionality-informed policy frameworks are useful in ensuring that principles, which are sensitive to intersectional approaches are utilized in decision-making processes (Hankivsky et al. 2014).
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Conclusion and Future Directions
The social determinants of health framework, with its focus on addressing upstream factors that lead to health inequities at both a local and global level, can contribute to the goals of achieving health equity that global public health frameworks also aim to achieve. Several shortcomings highlighted by scholars in global public health, such as the colonial legacy of global health approaches and neoliberal conceptions of health, remain key barriers in achieving health equity. These shortcomings are also similarly reflected in the limitations of the social determinants of health framework, where a focus on risk factors at an individual level and underemphasis of structural components align with, as well as reproduce, both colonial and neoliberal approaches. To address these issues, scholars argue that broader, structural changes at a global level around shifts in neoliberal, market-oriented financial systems, taxation regimes, and reassessing financial bailouts are necessary. These should also be accompanied by paradigm shifts that reassess the logic of affluent lifestyles that are underpinned by market-oriented systems. However, these broad shifts should not be viewed separately from local-level dynamics in empowering communities, given that colonial and neoliberal mindsets similarly influence power dynamics across international collaborations and partnerships, as well as local governance structures. Nevertheless, local governance structures can begin to implement structural changes that pave the way for empowering communities, which will lead to an emphasis on structural, contextual, and upstream changes that will have knock-on effects toward building efficacious, sustainable daily living and health outcomes for all. Furthermore, intentionally and continuously empowering local communities would also have ripple effects in encouraging the decolonization of daily practices in global public health and engender change in power dynamics from local to a global level. As researchers and practitioners deal with the aftermath and ongoing impact of COVID-19 around the world, they are reminded that the social determinants of health lens can also better prepare them for future pandemics. At a global level, the social determinant of health lens can help them examine and demand for action on social and political factors that have an impact on global health disparities such as vaccine inequities. This is especially salient for ongoing and future pandemics as vaccine coverage tends to be more rapid, and much higher in high-income countries compared to low- and middle-income countries (Hunter et al. 2022). At a local level, empowered communities can also ensure that national policies such as movement
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control measures and economic support are implemented through upstream factors of participatory mechanisms that impact the distribution of health outcomes during pandemics. This will ensure that unlike COVID-19, future pandemics will not continue to exacerbate inequalities that disproportionately impact those who are already vulnerable (Patel et al. 2020; Perry et al. 2021).
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Cross-References
▶ Decolonial Methodology in Social Scientific Studies of Global Public Health ▶ Global Health ▶ Social Epidemiology and Its Contribution to Global Public Health
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Social Justice and Global Public Health Lactricia Maja, Sarah Day, and Maham Hasan
Contents 1 2 3 4 5
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The Nature of Social Injustice, Its Roots, and Its Impact on Public Health . . . . . . . . . . . . . . . Taking a Social Justice Approach to Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social Injustice in Context: The Case of South Africa . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Challenges, Solutions, and Considerations of Centering Social Justice in Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Social Sciences, Public Health, and Social Justice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Social injustice, which underpins local and global public health problems, creates conditions that adversely and unequally affect the health of individuals and communities. Public health emergencies (re)illuminate existing social, health, economic, and political inequalities. Vulnerable groups include ethnic and racial minorities, the elderly, people who are socioeconomically disadvantaged, immigrants/refugees, people living in rural/underserved communities, LGBTQI* community, people who are incarcerated, women, and people with certain medical conditions (including mental illness) who are disproportionately and negatively L. Maja The Aurum Institute, Johannesburg, South Africa e-mail: [email protected] S. Day (*) Division of Social and Behavioural Sciences, School of Public Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa e-mail: [email protected] M. Hasan Crescent Consultancies; Centre for HIV-AIDS Prevention Studies, Johannesburg, South Africa e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_31
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impacted by public health emergencies. Social injustice is a public health issue as it increases rates of disease, disability, injury, and premature death due to lack of access to quality, affordable health while increasing risk factors associated with poorer health outcomes. Embedding social justice within global public health, then, requires a shift away from “biomedical tunnel vision” to address broader socioeconomic and health inequalities. Addressing public health problems without centering on social justice can further exacerbate existing health, social, economic, and political vulnerabilities. This chapter argues that adding a social justice lens to global public health will improve the health of individuals and communities through addressing oppression, injustice, and inequity while centering on justice, equity, participation, and collaborative relationships. Social justice approaches to public health center local and contextually relevant solutions develop approaches that prioritize vulnerable populations, develop healthcare methods and systems that are equity-based, and address sociohistorical legacies and structures, which underpin health inequality. Keywords
Social justice · Health inequality · Public health
1
Introduction
Investing in global public health is central to achieving the (Sustainable Development Goals (SDGs) because global public health is a platform that can address the triple threat human beings are facing: infectious diseases (both old and new); noncommunicable diseases (which account for 70% of mortality worldwide and are the leading cause of morbidity); and widespread environmental degradation, including climate change. Global public health calls for a range of interventions from vaccines, well-baby check-ups, hypertension management, diabetes screening, nutritional supplementation, cancer screening, tobacco control, mental health screening, injury prevention, access to potable water, sanitation, and others that can be delivered through public health platforms. In addition, public health can also be used to scale up low-cost environmental initiatives that reduce pollution, protect biodiversity, prevent disease spillover, mitigate climate change, preserve sources of freshwater, improve soil health, rehabilitate, and protect ecosystems (Martin 2021). A central tenet of global public health is that health and well-being should be accessible to all (Vicini 2021). Part of that is examining who has access to health and who does not, how are health outcomes distributed across the population, and what global public health needs to offer in order to generate equitable health solutions. Though centering on the social determinants of health, global public health is rooted within social justice (Vicini 2021). Social injustice, which underpins local and global public health problems, creates conditions that adversely and unequally affect the health of individuals and communities. That is, public health problems are socially generated and sustained
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(Wallack 2019). Indeed, the World Health Organization’s Commission on the Social Determinants of Health argues that “social injustice is killing people on a grand scale” (CSDH 2008). Public health emergencies (re)illuminate existing social, health, economic, and political inequalities (Gray et al. 2020) and the impact can be predicted along these lines of inequality (Wallack 2019). Social injustice is a public health issue as it increases rates of disease, disability, injury, and premature death due to lack of access to quality, affordable health while increasing risk factors associated with poorer health outcomes. Embedding social justice within global public health, then, requires a shift away from “biomedical tunnel vision” to address broader socioeconomic and health inequalities. Vulnerability (or health-related vulnerability) is not evenly distributed across axes of intersections of identity, such as race, gender, class, and geographic location (Gray et al. 2020). Vulnerable groups, include ethnic and racial minorities, the elderly, people who are socioeconomically disadvantaged, immigrants/refugees, people living in rural/underserved communities, LGBTQI* community, people who are incarcerated, women, and people with certain medical conditions (including mental illness who are disproportionately negatively impacted by public health emergencies (Gray et al. 2020). That is, social position is related to health (Blacksher 2012). Broader social processes, such as unemployment, low educational attainment, low socioeconomic status, systemic racism and sexism, and being medically underserved, are all interwoven and linked to adverse health outcomes. Social and economic policies are fundamental to dismantling or keeping in place social injustice (CSDH 2008). Social justice is then imperative to eliminating health inequality (Blacksher 2012). According to Gray et al. (2020), there are three streams of social determinants of health. The focus of public health interventions is generally on downstream social determinants of health, which include asthma and lung disease, diabetes, cardiovascular disease, cancer, obesity, COVID-19 cases, hospitalization, and deaths. However, Gray et al. (2020) argue that it is not enough to examine downstream determinants when addressing vulnerability, but also upstream and midstream social determinants of health. Upstream social determinants of health include racism, social policies, poverty, and discrimination. Midstream social determinants of health include access to healthcare, quality food, personal protective equipment (PPE), safe housing, educational attainment, ability to social distance, and medical mistrust. Each of these social determinants also affects vulnerable populations’ experiences of public health crises. Health outcomes are worse in unequal and low-income countries. Van Doorslaer and Koolman (2004) found significant inequalities in health favoring the higher income groups in all countries, which are particularly high in Portugal, and to a lesser extent, in the UK, and in Denmark. By contrast, they observe relatively low health inequality in the Netherlands, Germany, Italy, Belgium, Spain, Austria, and Ireland. That is, the question of social justice within public health is not only directed at health but also at practices and policies that unequally distribute the burden of the disease (Gostin and Powers 2006). Health impacts and is impacted by broader sociostructural factors, which marginalize specific populations. Furthermore, health is
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impacted by a market-first, individualistic culture (Wallack 2019), which positions the individual as responsible for their health and does not hold in mind the broader societal structures that drive inequality (Gostin and Powers 2006). The term global public health is inherently difficult to define as it does not have a widely accepted definition and is often used interchangeably with other terms such as international health and public health (Battams and Matlin 2013). Brown et al. (2006), however, argue that the term international health cannot be used interchangeably with the term global health as it carries a different meaning, and primarily refers to the control of diseases across the boundaries of different nations. On the other hand, the term public health refers to the science of preventing epidemics by promoting the physical health of individuals such as educating people about personal hygiene, ensuring that every person has access to health care services in their communities and can access nursing and medical staff for the early diagnosis and prevention of diseases (Battams and Matlin 2013; Liamputtong 2022). In the context of this chapter, the authors adopt the working definition of global public health proposed by Beaglehole and Bonita (2008): global public health refers to the actions that we take collectively to achieve equity and improve the health of people worldwide above the concerns of specific nations with the primary aim of bringing feasible and available cost. This chapter first examines the nature of social injustice, its roots, and its impact on public health. It then offers an overview of why public health needs social justice. Using South Africa as a case study, it then offers insight into how incorporating Social Sciences in public health could help toward achieving social justice in public health.
2
The Nature of Social Injustice, Its Roots, and Its Impact on Public Health
The term social justice denotes different things depending on the person affected by it. A general understanding of social justice, however, is that it is the moral imperative to remediate and avoid any unfair distributions of societal disadvantages (Dukhanin et al. 2018). However, for the purpose of this chapter, the term social injustice is used to refer to the actions and policies “that adversely affect the societal conditions” in which people can live a healthy life (Levy and Sidel 2013, p. 6). Educational restrictions, war, and other forms of violence, governmental corruption, failure to provide essential medical services, and public health are some examples of practices and policies that adversely impact the societal conditions in which people can lead a healthy life (Levy and Sidel 2013). Social injustice is a key concern for public health as it affects an individual life span and the ability to lead a productive life (Benfer 2015). Moreover, social injustice tends to lead to an unfair burden of inequalities in health particularly among people living in poverty and minorities often resulting in poor quality of life and poor health outcomes (Benfer 2015; Liamputtong 2019).
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Social injustices in health are often perpetuated and exacerbated through social stratification, which is the grouping of people into social hierarchies according to their relative positions based on various characteristics such as sexual orientation, disability, gender, race, social class, level of political, economic and social resources, and opportunities which reflect different levels of prestige, influence, and wealth (Braveman et al. 2010; Liamputtong 2019). For example, when looking at social class, those in the upper class when contrasted to those in the lower class, have fewer chances of suffering from physical disability, and have better health status and longer life spans (Braveman and Tarimo 2002). On the other hand, those in the low class are often susceptible to poor health outcomes due to living in poor environments characterized by poverty, lack of access to health care, overcrowding, lack of access to clean water, and poor nutrition (Amini and Bianco 2016). Benfer (2015, p. 281) argues that although poor health outcomes in low class are a result of multiple factors, poverty plays a huge role as it determines one’s socioeconomic status and limits one’s “resources and ability to access goods and services,” which contributes to poor health outcomes. Indeed, people living in poverty often have low income, which tends to limit their access to quality health care services such as purchasing medicine and consulting with doctors and having access to quality food (The World Bank 2014). Moreover, people with low income tend to be at a greater risk of developing mental illnesses when contrasted with people who have a higher socioeconomic status. That is because people with low socioeconomic status tend to live in more insecure circumstances, which often stems from job instability, financial difficulties, and other stress that stems from current living circumstances (Lazar and Davenport 2018; Liamputtong 2022). These stressors, therefore, make it difficult for an individual in lower socioeconomic brackets to access primary and preventive care due to financial limitations because of facility, healthcare, and transport costs (Lazar and Davenport 2018). Low socioeconomic status is not the only barrier to equitable healthcare. Geographical distance from health care services, issues of mobility to and from health care facilities, and transportation to health care facilities remain significant barriers (DeBruin et al. 2012; Liamputtong 2022). Ricketts and Sheps (2002), however, argue that although the distance from health care facilities has both negative and positive behavioral effects, those that are situated far from health care services are more likely to be discouraged to consult about their health as they tend to require additional effort and cost to reach health care facilities compared to those living nearby. Other studies corroborate this and demonstrate that increased distance to health care facilities tends to result in neonatal mortality and out-of-hospital accidental births (Grzybowski et al. 2011; Parker et al. 2000). Furthermore, those in the low socioeconomic class are often exposed to toxicants and air pollutants as a result of their geographical proximity to sources of pollution such as waste disposal sites, industrial facilities, and high-traffic roads (Padilla et al. 2016). The areas into which socioeconomically marginalized people are relegated contribute to poor health outcomes. Usually, these pollutants are rarely present in large amounts and their effect on communities’ health is rarely obvious and immediate (Briggs 2003). Instead, health is impacted over time. These pollutants result in
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poor health outcomes such as acute respiratory infections, lung cancer, and cardiovascular diseases (Wilkinson et al. 2007). It is therefore evident that poor health outcomes are often a result of uneven environmental health inequalities across different social groups (WHO 2016). Although social stratification plays a crucial role in health injustices across different social groups, disparities in education also play a crucial role in health inequalities (Levy and Sidel 2013). The causal relationship between education attainment and poor health outcomes can be understood in relation to a parent’s quality of education, which is often associated with the educational attainment of the children (Levy and Sidel 2013). For example, parents with low educational attainment tend to have limited socioeconomic resources, which subsequently affect their children’s educational attainment (Boardman et al. 2012). People with a low level of education are more likely to live under conditions that are not favorable and tend to have less purchasing power, which might potentially lead to susceptibility to poorer health outcomes when compared to individuals with higher educational attainment who tend to live in environmental conditions that are more favorable (Raghupathi and Raghupathi 2020).
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Taking a Social Justice Approach to Global Public Health
Over two decades ago, Kreiger and Birn (1998, p. 1603) offered an overview of the shared ancestry of social justice and public health, setting out a proposition that “social justice is the foundation of public health.” However, they also noted that there was a need to reconnect social justice to public health: ...an assertion that reminds us that public health is indeed a public matter, that societal patterns of disease and death, of health and well-being, of bodily integrity and disintegration, intimately reflect the workings of the body politic for good and for ill. It is a statement that asks us, pointedly, to remember that worldwide dramatic declines – and continued inequalities – in mortality and morbidity signal as much the victories and defeats of social movements to create a just, fair, caring, and inclusive world as they do the achievements and unresolved challenges of scientific research and technology (p.1603).
Using Krieger and Birn (1998) as a point of departure, the WHO Commission on the Social Determinants of Health also centered on social justice as a core tenet in addressing global health equalities. Addressing public health problems without centering on social justice can further exacerbate existing health, social, economic, and political vulnerabilities. This chapter argues that adding a social justice lens to global public health will improve the health of individuals and communities through addressing oppression, injustice, and inequity while centering on justice, equity, participation, and collaborative relationships. A core insight of social justice is that there are multiple causal pathways to numerous dimensions of disadvantage (Gostin and Powers 2006). These include poverty, substandard housing, poor education, unhygienic and polluted environments, and social disintegration. Gostin and Powers (2006) state that these and many other causal agents lead to systematic disadvantage
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not only in health, but also in nearly every aspect of social, economic, and political life. They further state that public health agencies have an obligation to address the root causes of ill health, even while they recognize that socioeconomic determinants have many causes, and solutions, which are beyond public health’s exclusive expertise. Wallack (2019) argues that public health problems are primarily problems of populations, not just individuals. Furthermore, public health problems are both pathological and political (Wallack 2019). These problems are properties of social, economic, and political systems – not just personal, individual, or behavioral factors. Therefore, if we are to successfully address social injustice in public health, a more comprehensive approach must be taken. State institutions are primarily responsible for ensuring the health of the people residing in a country (Pang 2011). Gostin and Powers (2006) argue that policymakers, therefore, should modernize antiquated public health laws to provide adequate power to reduce major risks to the population but ensure that government power is exercised proportionately, and fairly. Fairness requires just distributions of burdens and benefits to all, but also the procedural due process for people subjected to compulsory interventions. In order to achieve social justice in global public health, it is imperative to ameliorate systemic patterns that undermine the health and well-being of marginalized populations (Watts et al. 2021). Social justice approaches to public health center local and contextually relevant solutions, develop approaches that prioritize vulnerable populations, develop healthcare methods and systems that are equity-based, and address sociohistorical legacies and structures, which underpin health inequality. If justice is outcome-oriented, then inevitably public health must deal with the underlying causes of poor and good health. The key health determinants include the built environment (for example, transportation and buildings); the natural environment (for example, clean air and water); the informational environment (for example, health information and advertising restrictions); the social environment (for example, social networks and support); and the economic environment (socioeconomic status) (Gostin and Powers 2006). Ameliorating systemic patterns that undermine the marginalized populations can be achieved by addressing geographical, socioeconomic, gender, and racial barriers to access health care services (DeBruin et al. 2012). However, this process is easier said than done. One example of reducing structural barriers related to the geographic distance of healthcare facilities from communities would be bringing healthcare services to local communities by using mobile units collaborating with organizations that are trusted in the community to ensure the provision of quality healthcare services (DeBruin et al. 2012). On the other hand, social justice can be achieved when policymakers include individuals and communities that are disadvantaged in the development of strategies and identification of issues that address the social determinants of health as these individuals tend to experience first-hand inequities in health and can better identify challenges in their respective communities that make them susceptible to poor health outcomes (Benfer 2015). The Public health code of ethics supports this kind of approach and suggests that public health professionals should collaborate with members of the community to identify health issues and develop viable solutions (Thomas et al. 2002).
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Although addressing geographical and socioeconomic access to healthcare is of utmost importance, it is also of greater importance to ensure material justice, which focuses on how “income is redistributed towards the low-income citizens’‘(Reisch 2014, p. 237) who tend to be construed as not deserving recognition and mutual respect by the public sphere (Reisch 2014). Challenging the state market income of the low-class citizens (Reisch 2014) could, therefore, aid in ensuring that these classes of people can also access and afford health care services when needed. Achieving social justice and health equity would also require the amelioration of discriminatory practices and biases against vulnerable populations suggesting that various stakeholders such as organizations, churches, community groups, and government should take accountability in educating its members about the effect of discriminatory bias toward vulnerable populations (Benfer 2015; Watts et al. 2021). Instances of ameliorating discriminatory practices also include strengthening equityoriented and anti-racist curricula ensuring that the health needs of vulnerable populations such as migrants are met within public health (Machado and Goldenberg 2021). This approach could particularly help achieve health equity as mentioned earlier that vulnerable groups tend to experience discriminatory attitudes from various stakeholders, which accounts for their susceptibility to poor health (Melville 2005).
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Social Injustice in Context: The Case of South Africa
South Africa as a country exemplifies inequalities in health and remains one of the most unequal countries globally, despite the huge economic and social transformation since the 1994 elections (Rispel and Nieuwoudt 2012). Indeed, South Africa has a large and complex disease burden, and healthcare inequalities are extensive (Ataguba et al. 2011). Demographic factors, such as geographical location, gender, and race, remain the key determinants of poor health outcomes and social inequities (Ataguba et al. 2011; Rispel and Nieuwoudt 2012). Inequalities in health in South Africa are marked by differences in mortality and disease rates between different racial groups (Coovadia et al. 2009). For example, the national prevalence of HIV infection estimates revealed that high HIV infections were more prevalent among Black Africans (16.6%) and colored (5.3%) when compared to Indians and Whites who had a low prevalence of the disease (Simbayi et al. 2019). Health inequality in South Africa has both historical and contemporary roots. Although South Africa exemplifies inequalities in health and remains one of the most unequal countries globally, it is important to understand the root causes of such inequalities such as understanding the apartheid policies that perpetuated the recent inequalities in health. More recently, State Capture – which is systematic state corruption associated with former President Zuma and the Guptas – has further eroded South Africa’s political system (Heywood 2021). Health inequalities in South Africa are embedded within income inequalities, the migrant labor system, gender and racial discrimination, and the feminization of poverty (Coovadia et al. 2009; Mbali 2021). In contemporary South Africa, insufficient political will,
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corruption, state incapacity, and limited resources have severely constrained the country’s ability to implement equitable solutions to healthcare (Heywood 2021). Inequalities in health in South Africa are not only observed among different racial groups but also between rural and urban parts of South Africa. For example, professional health care services are mostly concentrated in urban areas while the rural areas are in a relatively underserviced and underprovided position (Ewing et al. 2020). Moreover, health facilities in the rural parts of South Africa are characterized by a shortage of healthcare workers (Gumede et al. 2021). About 15% of poor rural households in South Africa live more than an hour away from the closest clinic while 20% live more than an hour away from the nearest hospital (Gaede and Versteeg 2011). People living in the urban areas were more likely to be closer to health care facilities located within 10 km of their households (Gordon et al. 2020). The unequal distribution of health facilities, therefore, tends to result in marginalized rural communities not seeking healthcare as a result of a lack of financial means to sponsor trips to health care facilities resulting in poor health outcomes (Gordon et al. 2020). Furthermore, variations in health outcomes between subdistricts also reflect the socioeconomic differences within the country (Groenewald et al. 2008). For example, HIV-related mortality rates were reported to be very low in the Southern Suburbs of Cape Town, a predominantly affluent area, as compared to Khayelitsha, a low-income community in the Western Cape, which has the highest rates (Groenewald et al. 2008). These variations in health outcomes are also observed at a provincial level. KwaZulu-Natal, when contrasted to other provinces in South Africa, has the highest infant mortality rates. While on the other hand, the Eastern Cape has high mortality rates related to tuberculosis (Bradshaw et al. 2005). Differences within and between provinces can be attributed to resource allocation, geographic location, wealth, and political will. At an interpersonal level, the difference in health outcomes also varies between women and men. For example, men are vulnerable to suffering from tuberculosis while women have been reported to suffer from asthma (Ntuli et al. 2016). Despite contemporary South Africa’s move toward providing accessible healthcare, racial disparities continue to affect access to healthcare (McLaren et al. 2014). Currently, South Africa has three levels of health care: clinics, Community Health Centers, and hospitals (which are allocated to a district, regional, provincial, and central level). After the transition to democracy, under the Reconstruction and Development Programme, there was a shift away from large urban hospitals to a community-based comprehensive primary health care (PHC) policy, which focused on the building and upgrading of clinics (Foster 2005). According to Foster (2005), this move was in line with global guidelines for “developing” countries in the 1980s. While PHC relied in large part on social justice rhetoric, which centralized community participation, this fell short in practice. Furthermore, the implementation of PHC was hampered by an economic recession as well as South Africa’s move toward neoliberal economic policies, which, in the light of growing economic inequities, made community participation more difficult to implement (Foster 2005). Even
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when healthcare systems are free, other costs, such as the time and monetary cost of travel, place healthcare out of reach for many (McLaren et al. 2014). Despite the move toward neoliberal policies that resulted in the commodification of basic services, South Africa’s Department of Health did not waver in its commitment to free basic health care (Foster 2005). The long queues for healthcare are a testament to how overburdened these clinics are. Added to this, a limited health budget means that quality healthcare is not ensured for many South Africans. Resultantly, nurses are unable to develop positive relationships with the patients (Foster 2005). The proposed National Health Insurance (NHI) Act proposes to alleviate these shortcomings by providing all South Africans with essential, quality healthcare regardless of their employment status. However, critics have cautioned that state incapacity is a threat to the effective implementation of the NHI and the embedding of social justice in public health – that is, the current public administration would be incapable of “realising the Constitution’s promise” (Heywood 2021).
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Challenges, Solutions, and Considerations of Centering Social Justice in Public Health
There remain a number of key challenges, solutions, and considerations regarding the centering of social justice within the public health approach. Doing social justice in public health to ensure that all people have a high standard of health as set out in the WHO Constitution is challenging due to a complex interplay of multiple factors. Pang (2011) points out that in the so-called developed countries, out of the ten risk factors of disease, disability, and death, six are related to lifestyle (tobacco, alcohol, obesity, physical inactivity, illicit drugs, and unsafe sex). Conversely, in the so-called developing countries, only two lifestyle-related factors are related to disease, disability, and death (tobacco, unsafe sex). Indeed, all the other risk factors are related to poverty and inequality (underweight, unsafe water, indoor smoke from solid fuel, zinc deficiency, iron deficiency, vitamin A deficiency). Pang (2011) argues that people who are socioeconomically deprived experience not only an affordability problem regarding accessing medication, but also an availability problem. For example, medication, developed by pharmaceutical companies, is researched and developed within a capitalist market system – that is, medication is developed for profit, which limits equitable access to medication (Pang 2011). Gostin and Powers (2006) have noted that public health has been critiqued for overreaching the boundaries of disease and injury and straying into the social and political sphere. However, they further argue that in order to assure equitable health, it is essential to accept that social justice is a central tenet of public health. The move into the realm of broader determinants of health shifts the responsibility of health away from the individual to multiple levels of society (Gostin and Powers 2006). Therefore, really considering social justice within the public health framework requires a move beyond the myopic biomedical lens into social, structural, political, economic, and community lenses to build a comprehensive and just perspective on public health.
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Public health has been a target of political interest and dispute from its inception in the eighteenth century and onward. When reviewing the history of public health, it observes its mutual interchange as a science and as a policy, where the policies of public health are said to be in place to improve the population’s health (Sundin 2019). As an interdisciplinary arena, the funding of public health research has depended largely on public money – at specific institutes or from sources open to any researcher. But a great deal of funding has come through politically controlled channels. Mackie (2010) emphasizes the importance of macroeconomics in promoting and maintaining health. Drummond et al. (2015) define economic evaluation as “the comparative analysis of alternative courses of action in terms of both their costs and consequences.” This framework is used to determine the allocation of resources for public health. However, this raises an economic question in relation to the remediation of societal disadvantage and public health (Dukhanin et al. 2018). Health provision has been shaped by market-driven understandings of public health, which shift the responsibility of health from all levels of society onto the individual. Furthermore, in public health interventions, it may be difficult to balance the needs of the collective with economic and individual factors that limit and shape the modes of practice, policy, and research available to public health practitioners (Gostin and Powers 2006). Policymakers must often weigh one alternative that is preferred from an economic perspective against another alternative that is preferred from the perspective of social justice. According to some ideals of clarity in policy guidance, analyses often require the quantification of social justice considerations in numerical terms that can be compared with the outputs of economic evaluation (Dukhanin et al. 2018). However, social justice and public health are not able to be purely quantifiable. The complex intersection between social justice, public health, and physical identity cannot be neatly categorized, numbered, and statistically measured. The field of public health sees a convergence of policy, science, politics, and activism (Wallack 2019). In order for social justice to really be made central within global public health, progressive social and public health policies need to be put in place (Wallack 2019). Moreover, as a policy is not enough to enact change, a system of overlapping and collective responsibility along all sectors of society is imperative for developing equitable social and health policies (Wallack 2019). Collaboration is imperative for the success of a public health project that is centered on social justice (Huizar et al. 2022). Collaboration is important for developing action plans and communication that is culturally and contextually sensitive and relevant; putting together a robust team that consists of many partners, such as subject matter experts, communication specialists, community representatives, and government-related agencies; addressing gaps in public health approaches; and offering solutions to public health crises from multiple angles (Huizar et al. 2022). Furthermore, public health approaches should be transdisciplinary. Eliminating social injustice needs significant policy change (Blacksher 2012). Wallack (2019) argues for centering the community as the site of developing a just and equitable society. That is, the move toward the fair distribution of health and well-being must be accompanied by a move toward equal recognition – that is, vulnerable groups must be included in projects for health equality. Participatory
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parity – which means including communities and groups in public health interventions and research – repositions vulnerable communities from a group in which a public health solution needs to be enacted to people who are potential agents of change and equal partners in public health projects (Blacksher 2012). Taking a collaborative community approach also improves the efficiency of public health interventions. However, participation parity has been resisted due to funding restrictions, rewards structures at tertiary institutes, and some argue that community participation is not needed – despite the fact that community participation is a central tenet of public health work (Blacksher 2012). Indeed, participatory practices have not always been enacted or have been enacted in a way that does not assure mutual respect. Taking a social justice approach to global public health needs to balance public health policies striving toward bettering health and addressing social inequality (Philpott 2013). That is, the need to center social justice in our conversations about public health may be burdened by practical limitations such as scarce resources, ineffective programming, and insufficient reach. However, even the closure of ineffective programs may have a potential excessive burden that may be put on vulnerable populations who need access to health. Mobile health approaches have been centered as a possible social justice approach to public health problems. In their systematic review, Sauerborn et al. (2022) examined the use of apps or mobile technologies to address structural and epistemic injustice related to violence against women as a public health concern. They noted that for any mobile health interventions to be successful, they must go beyond the individual level of consideration and must look at the structural and epistemic dimensions of a public health concern. Integrative approaches to public health concerns and new technologies are imperative for creating public health solutions that are impactful and meaningful – that is, multiple sectors of society need to be brought together to provide comprehensive public health solutions that are innovative and context-specific. A key question regarding the move to mobile health technologies is how we address structural dimensions of public health concerns. It is important to include future users in discussions on developing solutions to public health concerns to make sure users are not negatively impacted by the use of new technologies and those new technologies are tailored to the local and cultural specificities (Sauerborn et al. 2022). They argue that mobile health technologies are not a panacea to public health concerns – they are rather a low-cost and low threshold “opportunity for support.”
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Social Sciences, Public Health, and Social Justice
Public health approaches need to be grounded in clear communication, communitycentered decision-making, justice-based planning for health equity, and the most cutting-edge public health practice available (Derreth et al. 2021). In order to achieve social justice, it is of utmost importance to incorporate social sciences in public health as social sciences play a significant role in “shaping public health”
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(Dhakal 2019, p. 11). Social sciences provide a plausible explanation for the development, cause, and poor health outcomes among the marginalized as it takes into consideration the social factors that cause poor health outcomes such as the influence of the meso-level environment, which includes the community, the family, workplace, school and the macro-level influence, which includes the economic, political, cultural, and social forces that contribute to poor health outcomes (Greenhalgh 2018). Moreover, many disciplines in the social sciences such as anthropology, social psychology, and sociology will help enhance knowledge about policy research and health equity as they offer both methodological approaches and insight into achieving health equity (Greenhalgh 2018). Adopting a social sciences approach to public health will further help provide insight into the economic and political factors that act as barriers to positive health outcomes, which often occurs as a result of the social order (Coreil and Dyer 2017). Furthermore, collaboration with multiple stakeholders, disciplines, and approaches is much needed in order to incorporate social context, history, community outreach, team building, collaborative project planning, communication strategies, education, public health research, and theory into approaches that can address health inequality. For example, collaboration with geographers can help understand how the social and physical environment contributes to varying poor health outcomes (Curtis and Oven 2012) and help in the evaluation and planning of resources required to map health issues (Dhakal 2019). While on the other hand, collaboration with political scientists can help access the financing allocated for health facilities and advocate for health care facilities that are convenient to the masses (Dhakal 2019). Social sciences can, therefore, assist public health practitioners to build robust, context-sensitive, community-engaged interventions. Public health may draw together critical theory and praxis in the social sciences to develop a high-level critical engagement, planning, communication, and collaboration to address social determinants of health from a social justice perspective (Derreth et al. 2021; Ford and Airhihenbuwa 2010; Freire 2020).
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Conclusion and Future Directions
This chapter has attempted to explain the nature of social justice, its roots, and its impact on public health. It emphasized that injustices in health are often perpetuated and exacerbated through social stratification whereby people are grouped into social hierarchies based on various characteristics such as social class, level of political, economic, and social resources (Braveman et al. 2010). It highlighted that those with low socioeconomic resources are often placed in poor geographical environments characterized by poverty, low income, pollution, and lack of access to health care facilities making them susceptible to poor health outcomes when contrasted with those in the upper class who tend to have better health status and longer life spans (Braveman and Tarimo 2002).
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Most importantly, the chapter highlighted how taking a social justice approach to global public health could help ameliorate inequities in public health and make quality health accessible to all. It argued that adding a social justice lens to global public health will improve the health of individuals and communities through addressing oppression, injustice, and inequity while centering on justice, equity, participation, and collaborative relationships. Moreover, taking a social justice approach in public health will help understand the causal pathway of numerous dimensions of disadvantage such as poverty, substandard housing, poor education, unhygienic and polluted environments, and social disintegration. In addition, it provided insight into how South Africa exemplifies inequalities in health. It highlighted how demographic factors such as geographical location, gender, and race, remain the key determinants of health in the country despite the economic and social transformation since the 1994 elections. Inequalities in health in South Africa are marked by differences in mortality and disease rates between different racial groups, social classes, and geographical locations such as between the rural and urban areas. The chapter further highlighted the key concerns and limitations of centering social justice within the public health approach. Public health has been criticized for overreaching the boundaries of disease and injury and straying into the social and political sphere. The chapter, however, argued that considering social justice within the public health framework requires a move beyond the myopic biomedical lens into social, structural, political, economic, and community lenses to build a comprehensive and just perspective on public health. In addition, the chapter provided insight into how incorporating social sciences in public health could potentially help achieve social justice and make quality health care accessible to all. It argued that social sciences provide a plausible explanation for the development, cause, and poor health outcomes among the marginalized as it takes into consideration the social factors that cause poor health outcomes such as the influence of the meso-level environment, which includes the community, the family, workplace, school and the macro-level influence, which includes the economic, political, cultural, and social forces that contribute to poor health outcomes (Greenhalgh 2018). Collaboration with multiple stakeholders, disciplines, and approaches is much needed in order to incorporate social context, history, community outreach, team building, collaborative project planning, communication strategies, education, public health research and theory into approaches that can address health inequality. Employing a social justice lens to public health emphasizes policy imperatives that improve the public health system, reduce socioeconomic disparities, center vulnerable communities when planning for public health crises, and address social determinants of health (Gostin and Powers 2006). Social justice could help reach beyond fairness in the distribution of policy impacts upon other dimensions of wellbeing (Dukhanin et al. 2018). In order to achieve social justice, it is of utmost importance to incorporate social sciences in public health as social sciences play a significant role in shaping public health by providing a plausible explanation for the development of poor health outcomes and their causes among those socially
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disadvantaged as it considers the social factors that cause ill-health (Greenhalgh 2018). Collaboration with various stakeholders in the social sciences field could, therefore, help achieve social justice and contribute toward positive health outcomes for the public. Although employing social justice lens to public health can potentially improve the public’s health system, some challenges have been presented making it difficult to incorporate the social justice lens in public health. Existing literature noted a disconnect between ethicists and economists in public health and argued that the most proposed frameworks for public health do not offer practical guidance for relating normative considerations to empirical evidence (Dukhanin et al. 2018). Most challenges and concerns are regarding the issues of the multiplicity of ethical commitments, which stem from the widespread disagreement over ethical considerations. As a result, there has not been any consensus reached on the normative basis of integrating social justice concerns into priority settings (Dukhanin et al. 2018). Nonetheless, there is a need to develop evidence-based teaching strategies to equip future public health practitioners to incorporate planning, communication, and community-engaged practice to address social determinants of health (Derreth et al. 2021). Global public health is a relatively new field of study, research, and practice, the necessary skills, knowledge, and abilities are still being identified (Jacobsen et al. 2021). The skills needed to scale up many of the global public health interventions are generally not complicated to teach (Martin 2021). However, it is the tools and infrastructure needed that are relatively inexpensive. Despite its profound effectiveness, relevance, and relatively low cost, global public health is chronically underfunded. This limit stems from a complex mix of political neglect, public inattention, poor advocacy, ineffective communication, and a fractured global public health community. The lack of attention among policymakers and the public is connected to a failure of the public health community to: (1) mobilize the broad array of constituencies within public health; (2) articulate clear, common messages showing the impact and value of public health; and being persistent in advocacy efforts (Martin 2021). Developing evidence-based teaching strategies could therefore help ameliorate the perception among global practitioners that social justice in public health is not important and seen as a second-level intellectual inquiry (Azetsop 2021).
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Health Promotion Paradigms Marguerite C. Sendall, Eva Neely, Ann Pederson, and Jody O. Early
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Vision: Underpinning Ideology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Beliefs and Values in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Equity and Justice in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Reflexivity and Positionality in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Planetary Health in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Approach: Theories and Frameworks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Existing Theory in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Indigenous Theory in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Posthuman Theory in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Scope: Professional Reach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Pedagogy in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Professional Identity in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Workforce Capacity in Health Promotion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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M. C. Sendall (*) Department of Public Health, College of Health Sciences, Qatar University, Doha, Qatar e-mail: [email protected] E. Neely School of Health, Te Herenga Waka, Victoria University of Wellington, Wellington, New Zealand e-mail: [email protected] A. Pederson BC Women’s Hospital and Health Centre, University of British Columbia and Simon Fraser University, Vancouver, Canada e-mail: [email protected] J. O. Early School of Nursing and Health Studies, University of Washington, Bothell, WA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_23
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Abstract
At the heart of health promotion is a very distinct ideology and suite of values such as equity, fairness, and justice aligned with progressive social change. Entangled in this futuristic pathway are deafening calls for health promotion to reflect upon its history, reconsider its positionality and recognize in action the urgency of addressing health inequities perpetuated by silenced voices, unconscious bias, and structural racism. Planetary health – the idea humans can only survive and thrive if individuals consider themselves part of the natural ecosystem and act accordingly – has become embedded in this progressive health promotion paradigm. Consequently, the Ottawa Charter has come under scrutiny and its contemporary relevance challenged. Fundamentally, health promotion is a social, ethical, and political activity. To this end, health promotion draws on an eclectic assortment of multidisciplinary theories. Many existing health promotion theories assume cartesian splits and perpetuate colonial injustices. Contemporary and liberal theory building is more important than ever to address decolonial health promotion including, for example, posthuman and new materialist theories. Increasingly, the critical use of evidence, a critical realist lens, the testing of theory, and the translation of knowledge are the bedrock of health promotion pedagogy. As this approach strengthens so too will the currently underdeveloped professional identity existing in health promotion practitioners. This in turn, along with other forces such as competency-based practice and global benchmarking, will continue to build a strong, resilient, and impactful health promotion workforce to deal with complex and urgent health issues in the future. Keywords
Health promotion · Equity · Social justice · Planetary health · Indigenous theory · Pedagogy · Professional identity · Workforce capacity
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Introduction
As we live in more complex and unjust worlds, where privilege and power are extenuated and health inequities deepen within and widen between populations, health promotion is challenged to become a critical science. From a young profession, health promotion has grown and transcended very quickly past original approaches such as health education and intervention programs. No longer are these approaches fit for purpose. There is a great urgency now, preexisting but highlighted by the pandemic, to push a critical systems agenda. No longer can governments rest on their laurels. Health promotion has a most important role because its business is populations. Population health outcomes can only be improved from a universal approach because decades of investment in local, clinical, and targeted strategies have shown diminished returns on just about every population health outcome measure. While prevention and grassroots approaches remain
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important at a local level, efforts should focus on impacting policy approaches and outcomes across all levels of government, all public and private sectors, and a plethora of built and natural environments to improve the health of all populations. Health promotion and health promotion pedagogy espouse a core set of values and beliefs, theories and frameworks, and approaches embedded in beneficence and nonmaleficence, evidence, social justice and civil societies, and planetary health. To this end, health promotion is passionate, health promotion is critical, and health promotion is just. The first part of this chapter will introduce the values of health promotion and the belief system which underpins our discipline. It gives particular attention to the ethics of health promotion and the disciplines underlying values of equity, empowerment, and social justice. Contemporary commitments to social justice and empowerment are illustrated through the concept of reflexivity, actions to address climate change and the complex affects of colonialism. In the second part of this chapter, the theories and frameworks used to approach our practice in health promotion will be outlined. This will include traditional and contemporary perspectives. The last part of this chapter outlines the scope of health promotion with specific reference to pedagogy, professional identity, and workforce capacity.
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Vision: Underpinning Ideology
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Beliefs and Values in Health Promotion
As a discipline, health promotion is associated with a particular set of values that set it apart from medicine and align it with progressive social change. The values underpinning health promotion were first articulated in documents released in the mid-1980s (World Health Organization 1986), and reflect post-World War II aspirations (de Leeuw et al. 2021) and first world concerns. Even so, the original foundations of health promotion must be understood as a product of that time. Indeed, commentaries on the Ottawa Charter, released in 1986 at the First International Conference on Health Promotion, have been published at every conceivable milestone since and still debate the continuing relevance of those initial values (e.g., Gagné and Lapalme 2017). As de Leeuw et al. (2021) have noted, the stated purpose of the Ottawa Charter was to generate commitment to the previously stated goal of the Alma Ata Charter, namely the achievement of “health for all by the year 2000.” Practically, “health for all” was to be achieved through the pursuit of health promotion, which was defined as “the process of enabling people to increase control over, and to improve, their health” (World Health Organization 1986). The Ottawa Charter described health as a resource for everyday life (rather than a goal in itself) and identified peace, shelter, education, a stable ecosystem, social justice, and equity as some of its prerequisites. The Charter proposed five areas of action, namely to strengthen community actions, develop personal skills, create supportive environments, reorient health services and build healthy public policy. These actions were to be pursued by three strategies: enable, mediate, and advocate.
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Accordingly, in this view, health promotion is associated with efforts to create health equity, ensure social justice, and foster individual and community empowerment. Notably, despite practical and political challenges, the relevance of these values continues to be upheld nearly four decades after the release of the Ottawa Charter (Cross et al. 2021). As a product of its day, however, the Ottawa Charter is perhaps not surprisingly criticized for being colonial (Chandanabhumma and Narasimhan 2020), sexist (Gelb et al. 2012), and individualistic (Goldberg 2012). Although the underpinnings of the Ottawa Charter are often lauded as fundamentally progressive, health promotion’s origins within the apparatus of the state – by governments and other policy actors – have positioned the discipline in a complex political and intellectual place that must be monitored for its potential for co-optation (Wallerstein et al. 2011). Frankly, not all health promotion actors have much freedom to advocate, enable, and mediate for the social, economic, spiritual, environmental, cultural, and legal conditions that create health (Cross et al. 2021). Yet, against the broad discourse of biomedicine, health promotion continues to offer a needed correction to an often victim-blaming behavioral approach to improving health and well-being. And given that social, environmental, and political conditions continue to erode the prerequisites of health and limit the possibilities for realizing even the most basic level of health, the discipline of health promotion has an opportunity to revisit its origins and redraw its vision of the future. Reflection
Contemporary state of and need for health promotion in the UK The whole ethos of the Ottawa Charter was, to a large extent, a reaction against the individualistic approach of health education where individuals were exhorted to adopt new behaviours in the face of personal risks to their health. The Charter represented a paradigm shift focusing, instead, on policy and environmental solutions (Nutbeam 2019). This shift has been reinforced in the subsequent World Health Organization (WHO) agenda for health promotion. At the same time, activities in many countries are called ‘health promotion’ but do not appear to be touched by the Ottawa vision. Rather, health promotion is seen as health education, behaviour change approaches and lifestyle advice. Currently in the UK, there remains an over emphasis on personal responsibility and behaviour change, rather than tackling the fundamental societal wide issues. Thus, the entire political point of the need for radical structural change is missed, and these reductionist activities persist in what some would regard as ‘victim-blaming’. More than 40 years have now passed since the Alma Ata declaration and, whilst we are living in a very different world in many ways, the thrust of it remains as important as ever and still resonates strongly in health promotion – strong health systems, underpinned by comprehensive primary healthcare and multisectoral approaches to reduce inequalities and ill health.
Excerpted from Cross et al. (2021, p. 31).
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Equity and Justice in Health Promotion
Health promotion is fundamentally a political and ethical activity (Cross et al. 2021). In that vein, we take our cue from Carter et al. (2012, p. 16), who argue health promotion is a normative ideal “. . .concerned with the equity of social arrangements: it imagines social arrangements can be altered to make things better for everyone, whatever their health risks, and seeks to achieve this in collaboration with citizens.” This aspirational view (de Leeuw et al. 2021) raises questions about the nature of a civil society and how health promotion can contribute to its fulfillment. Not surprisingly, many health promoters turn to the Ottawa Charter for their ethical stance, which asserts the centrality of equity and supports a view in which people “stand together, share burdens and help one another” (Carter et al. 2012, p. 4). Carter et al. (2012, p. 3) suggest there are two major consequences of embracing the view of health promotion outlined in the Ottawa Charter. The first is its vision of citizens as active participants in and potential authors of their own health, people with whom health promotion practitioners should work directly and, to some extent, be guided by when forming goals and strategies. The second is its focus on increasing the equitable availability of the conditions and resources to improve health, including through structural change and advocacy. Accordingly, the authors position themselves as researchers, practitioners, and educators working to advance health promotion as a form of ethical action aimed at improving control over the determinants of health. They hold themselves accountable for this work through the practice of reflexivity.
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Reflexivity and Positionality in Health Promotion
Reflexivity calls upon individuals to consider their own positionality and experiences in relation to social problems, systemic inequities, and various forms of unconscious bias (Alexander et al. 2020). Tremblay et al. (2014, p. 539) define reflexivity as: an intentional intellectual activity in which individuals explore or examine a situation, an issue, or object on the basis of their past experiences, to develop new understandings that will ultimately influence their actions or in which they critically analyze the field of action as a whole.
Building on this definition, Alexander et al. (2020) propose a three-part typology of reflexivity in relation to health promotion that aligns with the Ottawa Charter: (1) reflexivity in action, (2) reflexivity on action and (3) reflexivity underlying action. Together, these overlapping practices of reflexivity support health promoters to reflect critically in the moment, after some distance of time and space, and in relation to the fundamental principles of the discipline. The enactment of this commitment to reflexivity is evident in responses to social movements such as #MeToo (Corbin 2018) and #BlackLivesMatter (Leitch et al. 2020), the ravages of the COVID-19
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pandemic (Van den Broucke 2020), and the global climate emergency (Canadian Public Health Association 2019), to name just a few recent examples. Health promotion’s pursuit of equity and justice, not merely health, sets it apart from other forms of medical and health care practices that aim to detect, prevent, or ameliorate disease or illness (Cross et al. 2021). Successive global charters have endorsed the Ottawa Charter’s original commitments to equity and justice and extended the range of actors and sectors which are committed to contributing to improving the conditions for health. Recent scholars and activists explicated the origins of health promotion in a colonial context and increased the call for acknowledging Indigenous knowledges and practices as legitimate ways of knowing and being (Wright et al. 2019). These critiques supplement the call for explicit attention to Western biases within the training, research, and practices of health promotion and for the discipline to embrace explicit anti-racism commitments. In Canada, for example, significant anti-Indigenous racism training efforts have been undertaken, such as the San’yas training and policy commitments (Alberta Health Services 2020), but disturbing incidents of neglect and abuse of Indigenous patients and families continue to be documented (Turpel-Lafond 2020). Another product of colonialism and racism in Canada has become known recently. Across the country, communities are reporting they have identified human remains in countless unmarked sites associated with Indigenous residential schools, the last of which closed in 1996. These findings confirm decades-old accounts of children who authorities forcibly institutionalized and never returned to their homes (Supernant and Carleton 2022). Partly in response to these horrors and arising from intense advocacy, Indigenous leadership in the health field is expanding and novel health governance approaches, such as the First Nations Health Authority in British Columbia, are challenging historic practices of subjugation and assimilation. These movements are being accompanied by practical and educational tools to support culturally safe services in perinatal care (Perinatal Services BC 2021), perinatal substance use (BC Women’s Hospital and Health Centre 2021), cancer (First Nations Health Authority, Métis Nation BC, the BC Association of Aboriginal Friendship Centres and BC Cancer 2017; First Nations Health Authority, Métis Nation BC, the BC Association of Aboriginal Friendship Centres and BC Cancer 2017), and mental health (BC Mental Health and Substance Use Services n.d.). Racism and discrimination as determinants of health are global issues. In the USA, racism and discrimination are significant determinants of health, often manifest as poverty, incarceration, and homelessness, and many states have declared “racism as a public health crisis” (American Public Health Association 2021a; American Public Health Association 2021b). Language is central to expressions of racism and discrimination because language shapes people thoughts, attitudes, actions, habits, and culture. Language used by the news media and scientific community to describe health disparities can have negative impacts on populations. The standard for publishing on racial health inequities is very low because the scientific community does not consistently examine racism as a determinant of health. This is because there is no requirement for authors to examine racism as a cause of health inequity or to include race as a variable (Health Affairs Forefront
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2020). The lack of rigorous standards means scientific scholarship is confusing, potentially harmful, and largely ineffectual. While each of these issues presents an opportunity for action, small in themselves, they are tiny steps toward truth and reconciliation – a commitment made by all levels of the government and the health system. With its historic commitments to empowerment, equity, and justice, health promotion is positioned to align with and advance these movements (Cross et al. 2021). Indeed, health promotion must progress these ideas, if the planet and the human species are to survive. The recent election of an Indigenous leader with a vision for the integration of Indigenous ways of knowing and being within responses to the planetary health crisis as the president of the International Union for Health Promotion and Education (IUHPE) is an opportune development for the discipline.
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Planetary Health in Health Promotion
The 2019, the IUHPE in Rotorua, New Zealand, declared “Planetary health is the most significant challenge facing the world today, and it is most pronounced in the Pacific” (Tu’itahi et al. 2019, p. 100). With each passing day, health promoters are actively documenting the effects of human activity on the planet (Hancock 2018), supporting alliances among communities, scientists, and policymakers (Myers et al. 2021), and working to reduce or prevent climate-related catastrophes (Moysés and Soares 2019). In addition, health promotion leaders have called out our individual and collective responsibility to ensure the impact of humans on the planet is brought under control by engaging in such movements as One Planet Health and evolving the healthy cities and communities’ movement (Hancock 2021). It is understood that it is essential to incorporate Indigenous perspectives and experience as part of identifying potential solutions because of the disproportionate effects of the climate emergency on those people who have been dispossessed, forcibly moved, and lack the very basic conditions for health. Tu’itahi et al. (2019, p. 101) “call on the global community to advocate for greater space and autonomy for Indigenous people’s voices and Indigenous knowledge and recognise the critical contribution of promoting both planetary health and sustainable development.” Today there is a growing community of health promotion researchers, practitioners, and educators concerned with planetary health and the literature is expanding in this area: The expansion of the mandate of health promotion to include planetary health represents a new chapter in its constant re-definition within public health, and in the re-definition of the academic disciplines supporting it.. . . . To carry on the mandate of health promotion and ensure its longevity, health promoters need to continue advocating for health equity in the academic, policy and civic domains, and highlight its implications for non-Western countries and future generations. Health promoters also need to be reflexive and critical of their own practices and assumptions and question their unintended impacts on health inequities across the globe (Gagné and Lapalme 2019, p. 378).
Leaders thinking about the knowledge and skills needed to address massive problems such as climate change and racism propose that problems of this scale
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require thinking across systems and embracing complexity while creating new ethical terrain: “. . .each person on the planet, those alive today and those coming in future generations, is connected to every other” (p. 12). They contend any solutions will inevitably be created through interdisciplinary efforts and intersectoral actions – traditional principles in health promotion but now operating at a transnational, even global, scale. The key to these efforts will be mobilizing, informing, and supporting individuals and communities to identify and address their local challenges while simultaneously negotiating strategies, interventions, and commitments that cross traditional economic, political, social, geographic, and religious boundaries. The approach articulated by Cross et al. (2021, p. 9) reiterates an earlier view that while some health promoters talk of “interventions,” others prefer the idea of ‘implementation with people’.”
3
Approach: Theories and Frameworks
3.1
Existing Theory in Health Promotion
As a younger discipline, health promotion draws on an eclectic interdisciplinary assortment of theories or a system of ideas intended to explain something. At the core of theory selection lie politics and ideology. Which actions do we take to promote health? Do we give individuals information to change their health behaviors? Do we change environments to alter behavior, or at least enable easier adoption of ‘healthier’ behaviors? Or do we change policies to change the default conditions? Or, do we do all of the above? There is little doubt justification and likely some evidence for all these theoretical stances can be found. Often, theory selection is driven by disciplinary background. Health promotion holds its own disciplinary practice, but it is also a melting pot for disciplines with an interest in health across the social sciences, including but not limited to psychology, sociology, geography, anthropology, and political science. Theories drawn upon in the name of health promotion are thus proliferous. As a discipline radically committed to equity and social justice, the inherent challenge for theory is to progress such an agenda. Many books examine commonly applied theories in health promotion and have progressed the understanding of human health behaviors for example, Public Health: Local and Global Perspectives edited by Liamputtong and published in 2022 by Cambridge University Press. Other examples include Foundations for Health Promotion by Wills and Naidoo, published in 2016 by Elsevier, and Theory in Health Promotion Research and Practice: Thinking Outside the Box written by Goodson, published in 2009 by Jones & Bartlett Publishers. However, because health promotion embraces a broad sociopolitical concept of health, its approaches and theories span across disciplines and can be usefully engaged by many. Rather than reproducing past works, we will briefly provide an overview of some commonly used theories across different levels of change. Thereafter, we will point to how health promotion’s social justice agenda can be mobilized to persistently push theoretical boundaries and
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introduce Indigenous and new materialist theories to think about health promotion is a welcome ally to the social scientist. As a discipline radically committed to social justice and equity as distinguishing hallmarks (Mittelmark 2022), which theories health promotion theorists apply requires critical examination. Importantly, health promotion ethics and evidence sit alongside theory in determining how to plan, implement, and evaluate (Carter et al. 2012). Critical considerations of resourcing, value placed on individual responsibility, and reflecting on how much value health promotion theorists place on the moral (Western) value of health (good/bad, healthy/unhealthy) are cornerstones of how they ought to pursue theory selection. Underlying such deliberations are the roles assigned to agency and structure by articulating how much of health is determined by individuals or their environments. While many theories sit within substantialist approaches of targeting specific individuals or environments/structures, some health promotion theorists have advocated for the update of relational sociological theories (Veenstra and Burnett 2016). Within health promotion, an established disciplinary narrative is that multilevel approaches that address change at individual, community, and policy levels are most effective. Therefore, socioecological theory is a commonly used theory in health promotion, which theorizes an individual as embedded within, and interacting with, their immediate, intermediate, and distal social and physical environments in producing health. Socioecological theory is embedded within the founding document of health promotion, The Ottawa Charter (WHO 1986). The Ottawa Charter sets out a guiding framework for considering health promotion action, and draws on three key strategies (enable, mediate, and advocate) to act in five interlinked areas (developing personal skills, creating supportive environments, strengthening community action, reorienting health services, and building healthy public policy). The socioecological theory was adopted very early in health promotion theorizing (Stokols 1992), yet has failed to be comprehensively applied to date, despite the knowledge of the need for multilevel change being more pronounced than ever. Socioecological theory has contributed much to the knowledge of “influencing factors” on health, yet less has been achieved in using the theory to implement sustained structural change. While progress (yet with limited effectiveness) at individual level change has advanced, most systemic and structural theories are still most underused in health promotion (Schölmerich and Kawachi 2016). Nevertheless, more recent attention to, and application of, structural and systems theories (Golden et al. 2015) have raised the profile of such theories in health promotion. Behavioral/Psychological theories that target change at the individual level remain popular. Their simplicity, more easily defined indicators, and faster yielding outcomes make them politically attractive. Among this theory family, there is a broad array of theories, including the health belief model, theory of planned behavior, and social cognitive theory. Seeking to create change at the intra- and interindividual level, these theories typically address norms, attitudes, self-efficacy, and, to some extent, social and environmental factors. However, by themselves, theories that seek to change health at the individual level have been critiqued for lacking efficacy, ignorance of sociopolitical factors, ethically inept, and allowing the
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state to reinforce the role of the neoliberal, rational agent in achieving meaningful health change (Baum and Fisher 2013). Health promotion lends itself through its critical social justice orientation toward engaging a broad range of critical social theories. At its heart, social justice drives health promotion toward centering the marginal, and seeking meaningful advocacy through participatory engagement approaches from the bottom up (Strack et al. 2022), alongside structural and systemic change theories (Gelius and Rütten 2018). Health promoters are theoretically broad and have further drawn upon critical realism (Connelly 2001), political theory (Breton and de Leeuw 2011), feminist theory (Wade et al. 2022), critical race theory (Graham et al. 2011), and intersectionality theory (Heard 2020) to advance socially just health. The literature reveals there has been a call for, and move toward, greater inclusion of social theories of health inequalities across health promotion curricula.
3.2
Indigenous Theory in Health Promotion
Like many social sciences, health promotion has been built on the back of colonialism. Many theories assume cartesian splits (mind/body, subject/object, and nature/ culture) and are perpetual offenders in enacting colonial injustices. It is pivotal to raise the profile of Indigenous scholars who are sharing frameworks for decolonial health promotion. There is increasing recognition that to achieve socially just and equitable health it is essential to turn to Indigenous epistemologies to teach health promoters much about the ecological intertwining they have with the world. The decolonization of knowledge and theories has a long path ahead but there are some notable scholars helping with the reemergence and application of Indigenous ways of thinking. For social scientists who seek to decolonize their practices, Chandanabhumma and Narasimhan (2020) developed a framework for building decolonizing practices into health promotion by engaging in an iterative process of reflection, planning, and action. McPhail-Bell et al. (2019) co-developed a framework for decolonizing health promotion research with Indigenous and non-Indigenous researchers, and exemplified there are meaningful ways forward in bridging Western and Indigenous knowledges and theories. Additionally, frameworks that enable meaningful weaving together of these two diverse knowledge sources are fruitful approaches for the future (Macfarlane et al. 2015). What these frameworks have in common is that outcomes sought are often secondary to the process engaged in. The enduring confrontation with the sociocultural self through reflection, understanding of how much knowledge is built on colonial and increasingly neoliberal foundations, and decentering Western ways of employing theory and expert-driven approaches can open the doors to embrace relational, process-driven engagement with human and nonhuman agents of change.
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Spotlight
Indigenous Health Promotion Theories in Aotearoa New Zealand In Aotearoa New Zealand, the Indigenous Māori population experienced British colonization in the nineteenth century. Effects of colonization are severe and include a broad range of enduring health impacts and disparities (Hobbs et al. 2019). To combat ill-health and decolonize health promotion theorizing in Aotearoa New Zealand, Māori scholars have drawn on Indigenous knowledges (Mātauranga Māori) to pursue improved health for Māori. Further, the country operates under Te Tiriti o Waitangi, which is a commitment by European settlers to honor Māori sovereignty and self-determination. However, these commitments have not been honored, and there are still persistent struggles to enact this Treaty. Health promotion frameworks in Aotearoa New Zealand honor Te Tiriti o Waitangi and seek to guide theory and practice. Theories that draw on Māori knowledges (Durie 1999) are holistic and relational, and recognize connections between human and nonhuman as integral to health (Jones 2019). In a review, Wilson et al. (2021) synthesize core characteristics that span multiple Māori models of health. These include whakawhanaungatanga (building relationships), tikanga (using cultural protocols and processes), grounded in values of aroha (compassion and empathy), manaakitanga (kindness and hospitality), mauri (binding energy), and wairua (spiritual well-being). The important role of Indigenous knowledges for the climate threats people are facing is increasingly recognized. For instance, Jones (2019) points to the importance of decolonizing Western health promotion approaches for tackling climate change with Indigenous epistemologies for health promotion. Further, Tu’itahi et al. (2021) emphasize the interconnectedness of planetary and human health that can be best addressed through Indigenous spirituality and worldviews.
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Posthuman Theory in Health Promotion
Posthuman new feminist and materialist theories are a diverse assemblage of theoretical approaches that take an immanent and philosophical stance (Taylor and Gannon 2018). These approaches broadly decenter rational, conscious human action and distribute agencies across human and nonhuman relations. Scholarship developing these theories has been emerging in health and well-being work over the past decade (Andrews and Duff 2019). Rather than being a quality or property of a body, health becomes a quality linked across relations between human and nonhuman (environment, other living things, and material objects), and allows for fuller engagement with intrinsic affective, social, and material processes, treating health and illness as
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emergent capacities of sociomaterial assemblages. Posthumanism moves from social constructions (e.g., representation) of place, things, or concepts toward the affective and material emergence of human and nonhuman energies and interactions that provide the basis for meaning-making. For example, places become about what humans do in them, allowing us to dig more into contextualized emotive context of places (Andrews and Duff 2019). Through posthuman theory, long-standing issues can be reimagined and reproblematized with potential to mobilize new pathways. One caveat is the nonunitary approach this broad collection of theories takes. While there are commonalities (as just discussed) that connect posthuman and new materialist theories, the approaches reflect multiplicities and complexity and thus require invested exploration. Research in the areas of mental health and recovery (Fullagar et al. 2019), health inequalities and disadvantage (Fox and Alldred 2021), or nutrition (Elton 2021) point to the opportunities posthuman theories can afford health promotion. Posthumanism thus offers health promotion avenues to explore and create new lines of enquiry. It is important to note posthuman and new materialist ideas have existed for millennia in Indigenous epistemologies and engaging with Indigenous scholarship is crucial in such a learning journey (Blaser 2012; for some examples, see, Rosiek and Snyder 2020). Williams (2017) further offers a framework for pursuing Indigenous epistemologies for health promotion through engaging in place-based agency and socioecological resilience.
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Scope: Professional Reach
4.1
Pedagogy in Health Promotion
If health promotion is an art and a science, then so is health promotion pedagogy. For those who teach health promotion, there is an imperative to underpin pedagogy with the tenants of learning and teaching scholarship such as the critical use of empirical research, the adoption and testing of theory, the translation of knowledge within and across disciplines, and a contribution to the evidence base. Pedagogy should focus on innovative and cutting-edge approaches to contemporary health promotion issues, support the development of core competences for practice, and focus on opportunities such as course accreditation. Contemporary health promotion demands pedagogical alignment to address emergent and urgent issues and ensure practitioners are practice ready. This alignment has been no more obvious in the last 2 years. The COVID-19 pandemic brutally highlighted socioeconomic inequities and shone a spotlight on urgent issues. For example, Derreth et al. (2021) highlight how pervasive police violence and mass protests for racial justice heightened in the COVID-19 pandemic have demonstrated the urgent need for community-informed social change and demand a critical curriculum for health promotion practice. If emergent critical and contemporary issues like social justice are to be addressed in a meaningful way, collaboration, communication, and reflection need to be integrated into health promotion practice. Therefore, educators have a responsibility to address these complex skills in
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curricula. The authors suggest schools adopt critical service learning as a central tenant of pedagogy. Critical service learning is defined as an evidence-based pedagogy which emphasizes the critical praxis between theory and research to enact a social shift through legitimate community relationships and challenge the structure of power (Derreth et al. 2021). This approach will graduate students to be effective practitioners because it offers a focus on contemporary issues such as racial injustices through research, practice, and reflection. Other authors suggest contemporary curricula can address complex issues from an interdisciplinary approach, a hallmark of health promotion practice. For example, Miller et al. (2021) investigated competencies desired by interdisciplinary population health research graduate students and created a competency-based framework for training and program development. Students from disciplines such as health promotion and political science collected data from an environmental scan to identify core competencies, undertook community resource mapping to develop a database, and conducted consultations with research academics to confirm competency validity. The emergent framework informs program opportunities for enhanced interdisciplinary professional skill development. More so than ever, practitioners need to have a shared understanding of the essential values, knowledge, and skills for effective health promotion practice. The global environment of the last 2 years offered health promotion educators the opportunity to revisit the central tenants of health promotion practice and reinvigorate curricula to graduate health promotion practitioners ready to operate in a complex and dynamic practice environment. Reflection
The global pandemic has exposed cracks in the pedagogy of health promotion. Think back to your degree and how it prepared you to understand and address health inequities in health promotion practice. Reflect on these questions. 1. Think about the terminology and language used to describe health inequities in the media before and during the COVID-19 pandemic. How do you think it influenced your understanding of health inequities? 2. What strategies did your teachers use to help you learn about health inequity and how effective were they? 3. Think about the authors of your readings or the news media. Why does authorship matter when critiquing health promotion practice in the context of colonization? 4. What could your teachers do better to help you grasp the complexities of health inequity?
There is a strong link between pedagogy and professional identity or a shared understanding of professional relationships and networks, roles and responsibilities, underpinning values, attitudes and characteristics, and disciplinary culture. In
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comparison to other health disciplines, pedagogy and curriculum for health promotion professional identity are underdeveloped. Kratzke and Cox (2021) feel an intrepid and cutting-edge redesign of the curriculum should incorporate specific activities and experiences to address professional identity and support students’ transition to practitioners. This approach will intentionally develop students’ sense of belonging, dedication, and pride towards health promotion. Addressing professional identity in curricula is a steppingstone to growing a strong professional identity in the health promotion workforce. Health promotion educators have a responsibility to the profession and critical role to ensure they prepare and shape students professional identity so there is a smooth transition to the practice environment.
4.2
Professional Identity in Health Promotion
Comparatively, health promotion struggles with professional identity. This can be attributed to complicating issues such as public perception. That is, how does the public understand health promotion as a discipline against older professions like nursing? Confusion is caused by position title, description, and recognition. In Australia, for example, a health promotion practitioner can be employed in a position titled Community Development Officer. In the USA, Community Development Officer could refer to a fundraising position or an urban planner. In Australia, the discipline is known as health promotion and practitioners can apply to be an IUHPE Registered Health Promotion Practitioner (RHPP). In the USA, the discipline is known as health education focusing on individual behavior change. Practitioners are encouraged to become a certified health education specialist. Some practitioners choose a broader certification in public health. In Canada, professional identity is essentially left to the individual and expressed through voluntary membership in professional bodies such as a national or regional public health association. A dedicated health promotion organization, Health Promotion Canada, is currently undergoing redevelopment following the pandemic. Some Masters-level public health training programs have pursued accreditation with much debate among thought leaders about the value of pursuing these forms of recognition. Another issue might be the presence of an active and strong professional association. This problem has been addressed to varying degrees across countries. For example, in Australia, the Australian Health Promotion Association is a strong advocate and there are over a 100 RHPP. Other countries may not have a professional organization, and membership would be with a public health association. In some countries, membership is only available with an international organization. This can pose an identity problem from the time students start, and complete, their public health degrees. Professional identity for health promotion practitioners has been problematic over time. While some gains have been made through professional associations, practitioner registration, and course accreditation, efforts to galvanize identity have been patchy nationally and globally. For example, Beihl et al. (2021) conducted a
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longitudinal study using a qualitative approach to investigate the formation of professional identity. Focus groups were conducted at the beginning and end of the undergraduate program with two Swiss health promotion student cohorts. Students struggled with professional identity at the beginning of the degree. However, students found work placements helped them understand their professional role and identity and developed a better understanding at the end of the degree. The authors conclude behavioral, cognitive, and motivational aspects influence and foster students’ professional identity and help understand the complex profile of the health promotion practitioner. This suggests professional identity is important because practitioners who strongly identify with health promotion values and goals, such as capacity-building and political awareness, will adapt better to their professional roles. Other evidence suggests there are more complex issues implicit in professional identity. For example, in Victoria, Australia, Bensberg (2021) conducted qualitative (primary, semistructured) interviews to explore practitioners’ comprehension and utilization of a “self-in-the-system” approach. This approach encourages practitioners to examine their position and relationship to others and enables influential connections to impact change in complex adaptive systems. Practitioners engaged in and encouraged cooperation for trusted connections, used relationships for change, and viewed themselves as “prevention change agents” in the system. The authors concluded this approach is a potentially powerful mechanism to facilitate community-level health promotion change because it offers practitioners the opportunity to clearly identify their role and ability to influence others and change. There is a complex juxtaposition between professional identity and contemporary emergent issues. It is a reasonable assumption that values such as climate action, inequities in health, and political determinants are tied up in a personal belief system which impacts professional identity. For example, Johnson (2021) highlights the interrelationship between health disparities and environmental inequities amplified by COVID-19. This suggests health promotion practitioners have a fundamental role in a sustainable environment and future for all local and global populations and, therefore, a vested interest in climate change action. Considering this example, underpinning personal belief systems may coincide with health promotion principles and impact professional identity. Addressing this nexus should begin in novel curricula adopted to suit rapidly changing practice contexts and progressed through a range of professional avenues.
4.3
Workforce Capacity in Health Promotion
Over the last three decades, health promotion has developed and implemented competency-based approaches to practice. This competency-based approach to global benchmarking health promotion practice is underpinned by the Galway Consensus Statement. This seminal document, published from the 2008 IUHPE Galway Conference, outlines core competencies for health promotion practice (Barry et al. 2009). The Statement supports the development and sustainability of the health promotion workforce because it recognizes health promotions
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maturity from a plethora of disciplinary areas, practice in diverse settings in complex social, economic, and political contexts, and focuses on delineating health promotion competencies and developing competency-based accreditation to ensure a competent and benchmarked workforce across the globe (Dempsey et al. 2011; Battel-Kirk et al. 2009). This competency-based approach to workforce capacity development is supported by WHO charters and directives, international agreements, and national policies which promulgate the vision, core values, principles, political vision, and strategic objectives of health promotion (Barry 2008; Battel-Kirk et al. 2018). Recent research suggests health promotion competencies have been influential in benchmarking the quality of health promotion practice, education, and training (Battel-Kirk and Barry 2019a). Beyond the discipline specifically, global workforce diversity mandates transparent communication of the specialist contribution health promotion makes to specific population health priorities such as noncommunicable diseases and broad population health goals such as the Sustainable Development Goals (Dempsey et al. 2011). This mandate highlights the necessity to clearly articulate the distinctive competencies required for effective and ethical health promotion practitioners and progress competencybased practice and global benchmarking. A logical progression from core competencies is practitioner registration. Initiated by the Association for Health Promotion, Ireland, and authors of and participants in the Galway Consensus Statement, practitioner registration was adopted by the IUHPE. The IUHPE established the Health Promotion Accreditation System to support a competency-based approach to quality health promotion practice and the development and maintenance of a competent global health promotion workforce. The system has two jurisdictions: (1) health promotion practitioner registration and (2) health promotion course accreditation. Applications are voluntary and required to address competency-based criteria: the CompHP/IUHPE Core Competencies and Professional Standards. The structure of the system is a devolved model whereby the IUHPE Global Accreditation Organization (GAO) grant National Accreditation Organizations (NAOs) the authority to register practitioners according to agreed competency-based criteria and procedures in the geographical area. The GAO auspice the registration of practitioners in the absence of an NAO and the accreditation of courses. Recent research indicates the system is useful in different contexts because it offers formal recognition of competent health promotion practice (BattelKirk and Barry 2019b). In Italy, this research revealed the system was valued because it provided a title for practitioners distinct from other professions with competence in health promotion practice. In Ireland, the system was seen as a stepping stone to recognition for health promotion as a profession (Battel-Kirk and Barry 2019b). The movement has evolved at different stages across countries. Country investment has seen progress. For example, Italy and Australia have made significant gains in the number of courses accredited and practitioners registered. Other countries have developed culturally specific competencies, such as New Zealand and been successful in becoming an NAO.
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Challange
Globally, the adoption of health promotion course accreditation and practitioner registration has been piecemeal. Some countries, for a range of reasons, have struggled with momentum while other countries have promoted IUHPE course accreditation and practitioner registration with great success. In countries such as Australia where practitioner registration is well recognized and adopted, there remain challenges. For example, there are pragmatic issues related to continuing professional development, attrition for reregistration and no mandate to list registration as a key selection criterion on employment position descriptions. Consider these questions. Think about the nature of the health promotion workforce in your own national context. 1. What factors contribute to health promotion practitioners’ reluctance to apply for (or renew) their RHPP status? 2. Is health promotion practitioner registration a realistic proposition? If so, what will it take to mandate practitioner registration nationally? 3. Is it realistic for all health promotion courses to be accredited? If so, what will it take to adopt course accreditation nationally?
Workforce capacity for health promotion has gained attention over recent decades because of the rising global prevalence of chronic disease, heightened health inequities, and social change movements. In the 1990s, capacity-building for health promotion emerged in the public health literature and the evidence base has continued to grow. A study by Saaristo (2020) explored beginnings and developments in health promotion capacity-building using the diffusion of innovation theory. The authors considered core competencies and identified the strongest path, the core of the network, and distinct cliques within the network in 230 texts. Most of the recent texts were associated with community capacity-building and some focused on global capacity-building. This analysis suggests core competencies have been promoted at the global level but focused at the community level. In particular, there is a gap in the practice and quality of health promotion evaluation. This suggests the profession of health promotion should seek to better understand the nature of practitioners, the organization, and the system to build evaluation capacity and practice. Research by Schwarzman et al. (2021) examined the Evaluation Practice Analysis Survey (EPAS) to validate a conceptual framework of health promotion evaluation capacity. The survey was completed by 219 experienced health promotion practitioners in Australia. Twenty-one scales were assessed as reliable and valid out of 23 scales within the EPAS. The authors found this model of evaluation capacity reinforces the organization’s role in evaluation practice and encourages strategic implementation of more effective evaluation capacity-building. Workforce capacity includes ongoing
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efforts to develop skills and knowledge aligned with contemporaneous issues and continuing professional development plays a pivotal role. Well-established activities, such as journal clubs, offer skill development in critical analysis of current and relevant literature, facilitate interactive peer review, and promote critical thinking. Leavy et al. (2021) note approaches to journal clubs. Face-to-face journal clubs provide a peer forum for discussion about the most recent literature and knowledge translation. Online journal clubs address logistical challenges such as location and timing but are more challenging to facilitate. Health specialists, including health promotion practitioners, can develop and improve in knowledge and skills through journal clubs.
5
Conclusion and Future Direction
This chapter has discussed the values, beliefs, theories, and frameworks used to approach our practice in health promotion as well as ethics, research, equity and justice, and planetary health, pedagogy, professional identity, and workforce capacity. An understanding and commitment to these ideas will forge a workforce ready to tackle the complexity of the future world populations will live in: a world of narrowing gaps, salutogenic and equity-oriented approaches, genuine volunteerism and philanthropy and pro-active and caring governments on every health issue. A world where health promotion is everybody’s business. The future of human and planetary health is at a juncture. Yet again, there is an opportunity to stand up, highlight the juxtaposition of colonial and critical lenses, make a noise about futuristic paradigms, and impact health and social outcomes. Efforts need to be shifted up a gear and momentum needs to be accelerated. The status quo needs to be challenged, the evidence used judiciously, ethics upheld, the politics savvy, the next generation inspired, and an unwavering belief that the world can be changed. Now is the moment to change course, be courageous, unapologetic, and act. The time is nigh to bring about change for a more just, equitable, and healthier world.
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Accessing Health Care in Global Public Health: The History of Conceptual Frameworks An Nguyen
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Conceptual Frameworks of Access Prior to 2000 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 The Behavioral Model of Anderson and Colleagues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 The Barrier-Focused Model of Penchansky and Thomas . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 The Barrier-Focused Model of Dutton . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 The Barrier-Focused Model of Frenk . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Recent Conceptual Frameworks of Access to Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 System-Centered Approaches . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Patient-Centered Approach . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Adoption of Conceptual Framework of Access to Health Care in Empirical Studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 The Conceptual Framework of Access and People Living with Disabilities . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Access to health care is a complex notion that has been explained in different ways by different authors. In the literature, the terms “access,” “availability,” and “utilization” have been used interchangeably to illustrate whether people’s carerelated needs are provided effectively by the available health care services. Conceptualizations of access seek to understand the common elements outside of specific contexts; these concepts are then applied in the particular local contexts. Access to health care is recognized as the key influential factor for improved population health outcomes and health care system sustainability. Generally, access to health care is measured in relation to the utilization or availability of health care services. Many researchers had developed multiple dimensions to measure access to health care such as the behavioral model of Aday and Anderson (1974), and the three barrier-focused models of Penchansky A. Nguyen (*) School of Social Sciences, Monash University, Melbourne, VIC, Australia © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_33
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and Thomas (1981), Russell et al. (2013), and Saurman (2016). The conceptual frameworks of access to health are categorized into two core approaches, which are the system-centered approach and the patient-centered approach. This chapter provides the history of the conceptual frameworks of access to health care in global public health and discusses some empirical research that applied these frameworks. Measuring access to health care could recognize barriers, in turn contributing effectively to addressing difficulties in order to improve access to health care services to many individuals who are in need to sensitive health care in their everyday lives. Keywords
Access · Access to health care · Conceptual framework of access · Public Health · Framework
1
Introduction
Access to health care is a complex notion that has been explained in different ways by different authors (Levesque et al. 2013). In the literature, the terms “access,” “availability,” and “utilization” have been used interchangeably to illustrate whether people’s care-related needs are covered effectively by the available health care services (Souliotis et al. 2016). Conceptualizations of access seek to understand the common elements outside of specific contexts; these conceptualizations are then applied in the particular local contexts. This chapter will explore the various conceptualizations of access to health care in global public health. When applied to health care, the concept of access has multiple dimensions. The most readily apparent dimension, “availability” refers to the actual presence of health care delivery including infrastructure, health personnel, and utilization (WHO 2015). Utilization, an artifact of availability, is the health care outcome of the interaction between health care providers and the patients (Silva et al. 2011) and captures the extent to which people actively engage with – or use – the health care services available. Access to health care is recognized as the key influential factor for improved population health outcomes and health care system sustainability (Souliotis et al. 2016). Generally, access to health care is measured in relation to utilization or availability of health care services. Many researchers had developed multiple dimensions to measure access to health care such as the behavioral model of Aday and Anderson (1974), and other three barrier-focused models of Penchansky and Thomas (1981), Russell et al. (2013), and Saurman (2016). The conceptual frameworks of access to health care in this review are categorized into two main approaches. The first approach is the system-centered approach including the behavioral model, the barrier-focused models, and the behavioral ecological model. The second approach is the patient-centered approach. These approaches are discussed in
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detail in this chapter. Measuring access to health care could recognize barriers, in turn contributing effectively to address difficulties in order to improve access to health care services. With the aim to provide a holistic picture to the readers, this chapter is structured into six sections. First, by a hand searching, the history of the conceptual frameworks of access that were developed prior to 2000 is presented in Sect. 2, and this is followed by findings from a metasearch on the conceptual framework of access to health care for the period 2000–2020. The details of this are presented below in Sect. 3. In the fourth section, the employed conceptual framework of access to health care in the empirical studies is also presented. Fifth, this chapter discusses the conceptual framework of access and people living with disabilities. A conclusion and direction for the future are included at the end of this chapter.
2
The Conceptual Frameworks of Access Prior to 2000
Prior to 2000, researchers in the Public Health sector were interested in the systemcentered approaches. There are two main models including the behavioral model and the barrier-focused models. In the barrier-focused models, the scholars developed their conceptual frameworks of access with different dimensions of access to health care services in order to measure the quality of health care services. Details are below.
2.1
The Behavioral Model of Anderson and Colleagues
The earliest model is the behavioral model of Anderson and colleagues (1973). The concept of access to health care services refers to the entry of the patients into the health care systems and how this influences treatments (Aday and Anderson 1974; Anderson and Newman 1973). This model focuses on the characteristic of the population who use health care services. Anderson and Newman (1973) focused on two core components, which were called the characteristic of individuals and the characteristic of health care services utilization. They emphasized the importance of health care services utilization including type (hospital, physician, drugs and medications, dentist, nursing home, and others), purpose (primary care, secondary care, tertiary care, and custodial care), and unit of analysis (contact, volume, and episodic care). The use of health care services for patients contributed by societal determinants (technology and norms) have resulted in very long-term trends for health utilization (Anderson and Newman 1973). The characteristics of the populations were identified as predisposing characteristics, enabling resources, and illness level. Predisposing factors referred to as social demographic factors included sex, age, and ethnicity, which represented a social status of a person, and in turn the capacity to cope with health issues. Enabling factors referred to available resources that impacted the use of health services. Illness level included perceived and evaluated
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symptoms and diagnoses. These elements comprised the larger domain of health behavior, which influenced the health outcomes (Anderson and Newman 1973). Aday and Anderson (1974) subsequently published a conceptual framework of access to medical care. In this framework of access, they identified five components of access to health care services. These included: health policy (financing, education, manpower, and organization), characteristics of the health delivery system (resources including volume, distribution; and organization including entry, structure), characteristic of the population at risk (predisposing, enabling, and need), utilization of health services (type, site, purpose, and time interval), and consumer satisfaction (convenience, costs, coordination, courtesy, information, and quality). These components were linked and paths among and between them resulted in an appropriate health care utilization (Ricketts and Goldsmith 2005). This model is based upon a conceptual framework based on health policy objectives through the inputs (characteristic of the population at risk) to outputs (health outcomes). The overall framework did not characterize access as a linear flow as with the earlier Anderson’s model because this framework focused more on health policy characteristics while the earlier one focused more on the health systems. Thus, this conceptual framework of access was more political than an operational because it was explicitly linked to the goals of health policies (Aday and Anderson 1974). The second version of the behavioral model of Aday and Anderson (1974) is appropriate to evaluate health policies, while the first version of this model is appropriate to measure access to health care services. With respect to the advantages of the first version of this model, many scholars tended to adopt the first version than the second version.
2.2
The Barrier-Focused Model of Penchansky and Thomas
The barrier-focused model of Penchansky and Thomas (1981) included five dimensions of access. Penchansky and Thomas (1981) conceptualized access as focused on barriers to health care utilization. They suggested that the concept of access was the “the degrees of fit between clients’ needs and the health system’s ability to meet those needs” (Penchansky and Thomas 1981, p. 128). They identified a set of specific dimensions describing the fit between the health care system and the potential patients; in turn, they sought to address barriers in accessing health care services. Five dimensions included: availability, accessibility, accommodation, affordability, and acceptability. They also provided the definitions for each dimension. Availability referred to the relationship between health professionals and health facilities to meet patients’ needs. It referred to the adequate supply of the health care system. Accessibility described the distance to health care services from the patients’ homes, including transportation (cost and time). Accommodation described the organization of the health care services including buildings, waiting rooms, and opening hours. Affordability referred to the financial ability of the clients and the willingness to pay for the services. Acceptability referred to representing the attitudes
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of the patients toward the health care providers, and the communities (Penchansky and Thomas 1981). These dimensions of access were related to the predisposing and the enabling factors of Anderson’s model (1973) but not identical with the behavioral model of Anderson (1973), because the concept of access to health care was viewed generally and more broadly, while Anderson and colleagues (1973) viewed the concept only through the health care utilization (Derose et al. 2011). Although this barrier-focused model has not been used as frequently as the behavioral model of Anderson and colleagues (1973), it has been a good reference for researchers. For example, recently, this model influenced Saurman (2016) when she developed the model of access to health care for her research. Details are in Sect. 3 below.
2.3
The Barrier-Focused Model of Dutton
Diana Dutton (1986) noted that the barrier factors within the health care services or health care clinics could create resistance to the health care services. These barriers include financial, organizational, and ecological factors. Dutton’s model was developed partly based on Anderson’s model (1973) in regard to the individual characteristics (Predisposing component, Enabling component, and Illness level). However, Dutton focused on the effects of health care providers and health care systems that impacted patients. To Dutton, health care providers and health care system features included structural barriers (financial, time, organizational, and practice patterns), and physician characteristics (demographic factors, training, experience, and attitudes), which influenced patient characteristics (Dutton 1986). In her paper, Dutton did not define the terms access to health care services. Although Dutton’s model focused on the barriers to accessing health care services, Dutton restructured the dimensions of access that were developed by Anderson and Newman (1973). Therefore, this model did not apply in the field.
2.4
The Barrier-Focused Model of Frenk
Julio Frenk (1992) acknowledged that the access definition of Penchansky and Thomas (1981) was not clear but was used interchangeably among access, accessibility, and availability (Frenk 1992; Ricketts and Goldsmith 2005). Thus, Frenk tried to organize the domains of access based on the model of Penchansky and Thomas (1981) and Donbedian’s ideas of accessibility and availability. To Donbedian, accessibility was defined by the phrase of social-organizational accessibility (Ricketts and Goldsmith 2005). For example, the reluctance or refusal of a male patient to see a female doctor. The availability referred to the production capacity of health care resources (Frenk 1992). Frenk organized a series of domains for access, which included narrow, intermediate, and broad domains in order to consider the concept of accessibility. The narrow domain (accessibility) described the population’s ability to receive the care; The intermediate domain (availability)
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referred to the health care resources; The broad domain (access) defined the ability of the population to utilize the health care services that meet their needs or desires (Frenk 1992; Ricketts and Goldsmith 2005). Frenk proposed that access was used in the broad domain, availability was used in the intermediate domain, and accessibility was used in the narrow domain. He described accessibility as the possibility of a person to receive care. Accessibility also referred to the available health care resources and was taken into account in the ability to produce health services (Ricketts and Goldsmith 2005). To Frenk, access was defined as the ability of people to utilize health care services given needs and/or desires to obtain it (Frenk 1992). Although the conceptual frameworks of access to health care discussed above were developed decades ago and dominated in high-income countries, they provided a fundamental foundation for researchers in global public health. Below is a review of the recent conceptual frameworks of access to health care.
3
Recent Conceptual Frameworks of Access to Health Care
The literature defined access in multiple ways. While some researchers defined access as being more related to health care users (patients or consumers) (Saurman 2016), other researchers defined access as the interaction between clients and the services (Levesque et al. 2013; Russell et al. 2013). Scholars also developed dimensions of access for measuring or evaluating the access to health care services that were suitable for their local research contexts. Details of each approach are presented in the chapter. The section comprised two main approaches that include the system-centered approach and the patient-centered approach. In relation to the system-centered approach, the literature has documented two types of models included the Barrierfocused model, and the Behavioral-ecological model (see Fig. 1).
The barrier-focused models System-centered approaches The category of the recent conceptual framework of access
The behavioralecological model Patient-centered approach
Fig. 1 The category of the original conceptual frameworks of access to health care
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System-Centered Approaches
In the barrier-focused models, researchers introduced the concept of access, which focused on barriers to health care utilization. These models were popular in research in the public health sector. Each author modified the dimensions of access for their local research contexts. As a result, they developed varied dimensions of access. For example, the barrier-focused model of Peters et al. (2008) used four dimensions of access. Peters et al. (2008) were concerned about the quality of care in low-middle income countries, which led them to develop a conceptual framework of access that built on longstanding descriptions of the actual use of the health care services. They described four dimensions (geographic, availability, financial, and acceptability), and each dimension included supply and demand sides (Peters et al. 2008). While the conceptual frameworks of access to health care services prior to 2000 (as discussed in Sect. 2) were dominated in the field in high-income countries for decades, the barrier-focused model of Peters et al. (2008) was better because the research was conducted in low-middle income countries. However, this model still had shortcomings because their research lacked specificity as data was collected on a global scale and did not focus on any specific population. First is the barrier-focused model. Russell et al. (2013) were concerned about access to primary health care for Australians who lived in remote and rural areas. They defined access as the potential ease with which clients can obtain health care in times of need. Their research aimed at changing health policy, in particular primary health care policy, which resulted in identifying a set of variables to measure the access to primary health care. Based on the model of Penchansky and Thomas (1981) and the three dimensions of access (geographic, financial, and organizational factors) of Forrest and Starfield (1998), Russell et al. (2013) identified seven dimensions of access, which are availability, geography, affordability, accommodation, timeliness, acceptability, and awareness. Each dimension was clearly defined by Russell et al. (2013). Availability referred to the volume and types of primary health care services and facilities, which were related to the health care needs of the clients; Geography referred to the ability and ease with which clients could go between their homes to the health care services; Affordability referred to the ease with which consumers could pay for the total costs for the needed health care, including direct and indirect costs; Accommodation referred to health care resources that clients were able to contact, gain entry to, and navigate the system at times of needs; Timeliness referred to the extent to which health care services was sought, offered, and received within a time frame in relation to achieving the best health outcomes; Acceptability referred to clients’ attitudes and beliefs about their health to the characteristics of health care providers; and Awareness referred to the communication between health services and clients (Russell et al. 2013). Although this model focused on barriers to health care services, it was more political than practical as this aimed at assisting policymakers in the public health sector, particularly in the primary health care policy. Hence, this model is not wellknown for global public health.
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The Barrier-Focused Model of Saurman (2016) was adopted from the model of Penchansky and Thomas (1981). Saurman (2016) further improved the dimensions of access from five to six dimensions. The sixth dimension was awareness, which referred to the communication and information strategies between clients and health care services (Saurman 2016). There were not many scholars who adopt this model in the academic because the sixth dimension of Saurman’s model (2016) is included in the acceptability dimension of access in the barrier-focused model of Penchansky and Thomas (1981). The recent model was the behavioral-ecological model of Ryvicker (2018). Ryvicker (2018) was concerned about vulnerable populations and the barriers that affected their access resulting in health disparities. He developed the conceptual framework of access to health care based on the ecological model of Satariano (2006) in epidemiology and the model of Anderson and Newman (1973). Ryvicker (2018) identified three environments of access to health care including the health care environment, social environment, and built environment. To Ryvicker (2018), the health care environment referred to market factors that constitute health care services within an area. This included four categories, which were: health care demand; social-economic resources in the area; delivery system characteristics; and market dynamic such as payment system variables. The supply and demand interacted along with the available resources and were influenced by the policy environment. The built environment referred to the physical infrastructures and public spaces. These structures impacted clients’ behavior and the way they interacted with resources and health services. The social environment referred to the quality of social relationships in the area such as trusted neighbors, social support, and civic involvement. These environments influenced potential access and navigate people to access health care available resources in a geographic area (Ryvicker 2018). These conceptual frameworks of access were useful approaches with regard to identifying barriers, and in turn, improving the quality of health care services for patients. Although some of these models focused on vulnerable people (Ryvicker 2018) and were conducted in low-middle income countries (Peters et al. 2008), these models were not appropriate for some research, particularly for a specific population such as people with disabilities.
3.2
Patient-Centered Approach
Levesque et al. (2013) developed a more patient-centered approach, in which they defined access as the opportunity to have health care needs to be fulfilled by identifying the health care needs, the health care seeking, the health care reaching, the health care uses, and being offered an appropriate model of access to the need of care. Levesque et al. (2013) conceptualized access through the supply side and demand side. On the supply side, they identified five dimensions such as approachability, acceptability, availability, affordability, and appropriateness. These dimensions did not stand separately, they related to each other. On the demand side, they
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identified five corresponding abilities of patients to generate access, which are the ability to perceive, the ability to seek, the ability to reach, the ability to pay, and the ability to engage (Levesque et al. 2013). Seemingly, this is a more holistic approach than earlier approaches, it may be appropriate to research access to health care services in many countries. However, it may not fully address nuances for some vulnerable people such as those with disabilities in low-middle income countries. The next section will provide evidence of the value of these models in global public health academics.
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The Adoption of Conceptual Framework of Access to Health Care in Empirical Studies
Generally, researchers in public health have applied these various models to a variety of topics such as maternal, new-born and child health (Matthews et al. 2019), primary health care (Richard et al. 2016; Ward et al. 2018), cancer patients (Anderson et al. 2020), Hepatitis B patients (Blanas et al. 2014), and village malaria workers (Liverani et al. 2017). While a few scholars focused on suburban poverty (Silva et al. 2011; Ward et al. 2018), others paid attention to the rural population (Anderson et al. 2020; Russell et al. 2013). While most studies focused on vulnerable populations (Anderson et al. 2020; Hanssens et al. 2016) including disability (Harrison et al. 2020; Kumi-Kyereme et al. 2020; Reichard et al. 2004), there was one paper that focused on children (Reichard et al. 2004). Most of those studies were conducted in high-income countries such as the United State of America, Australia, Canada, Greece, and Belgium (Anderson et al. 2020; Blanas et al. 2014; Hanssens et al. 2016; Reichard et al. 2004; Schnake-Mahl and Sommers 2017), while only a few studies were conducted in low-middle income countries such as Mozambique, Malawi, East and Southern Africa (Harrison et al. 2020; Kumi-Kyereme et al. 2020; Liverani et al. 2017; Tschirhart et al. 2016). Across 20 empirical research studies that the author reviewed for the purpose of writing up this chapter, researchers commonly applied Levesque’s model (2013) (Anderson et al. 2020; Harrison et al. 2020; Suurmond et al. 2016; Ward et al. 2018) and used qualitative, quantitative methods, and mixed-methods. For instance, a mixed-methods study by Anderson et al. (2020) focused on cancer patients who were Indigenous Australians in the Northern Territory. They applied Levesque’s model of access to recognize the barriers impacting cancer patients’ access to health care services. Using the same Levesque’s model (2013), a qualitative study by Suurmond et al. (2016) was conducted in the Netherlands, targeting the elderly. They explored how the Dutch elderly had access to home care services. Although the barriers-focused approach of Penchansky and Thomas (1981) was developed nearly 40 years ago, it was still a good reference for some recent research (Liverani et al. 2017; Ooms et al. 2020; Souliotis et al. 2016; Yao et al. 2013). For example, a quantitative study by Souliotis et al. (2016) designed a questionnaire for mapping access to evaluate the access to health care services across 28 European countries. For each question, they used a Likert scale (1932) to measure each
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dimension of access. To do that, in the question for access to a medical test, they listed five dimensions of access, each dimension went with a five-point answer ranging from strongly disagree to strongly agree. The results suggested that there was no best performance in all cases in any country because some health clinics were inaccessible but affordable. Moreover, they stated that this was a very useful approach to exploring access to health care across countries (Souliotis et al. 2016). Ooms et al. (2020) conducted research in Kenya, Tanzania, Uganda, and Zambia, which explored the barriers to access to sexual and reproductive health care services for the general population, in turn suggesting some implications for improvements to the health care services such as modifying the physical environment. Although Anderson’s model (1973) was older than Penchansky and Thomas’ model (1981), it was still useful for some researchers. For example, Blanas et al. (2014) conducted research in the United State of America focusing on AfricanAmerican patients when they sought Hepatitis B screenings and treatment. Anderson’s model (1973) provided a solid grounding for Blanas et al. (2014) to explore the behaviors of Hepatitis B patients when accessed health care services. The recent conceptual framework of Russell et al. (2013) with seven dimensions of access yet has not been applied in empirical studies. It could be because it was more political than other models. Although this approach aimed at assisting policymakers, particularly in the primary health care policy, there was only one paper that has used this model. Hanssens et al. (2016) applied the model of Russell et al. (2013) to explore the barriers to access to health care services for people living in Italy, and in Belgium. They followed seven dimensions of access including availability, geography, affordability, accommodation, timeliness, acceptability, and awareness. However, they did not present any data regarding the first dimension, which was availability, and the researchers did not provide any further explanation on this.
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The Conceptual Framework of Access and People Living with Disabilities
To date, most of the conceptual framework of access to health care and the empirical studies dealing with health care services focused on people without disabilities and/or populations at risk in high-income countries while less attention has been paid to the people with disabilities in low-middle income countries. Additionally, much of the literature on access is situated in public health. Although these conceptual frameworks of access are useful references for researchers in the public health sector, these frameworks fail to capture the complexities of living with disabilities and engaging with and experiencing health care issues for social sciences researchers. Thus, those researchers, who are in the social sciences, need to develop an anthropological/sociological understanding of access to health care that can provide a much-needed corrective. Regarding disability, Reichard et al. (2004)’s study focused on people with developmental disabilities from low income backgrounds in the United State of
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America. They did not strictly use any models of access. They designed four dimensions of access including availability, accessibility, affordability, and appropriateness. Although they did not explain clearly how they developed this concept, their definitions for each dimension were similar to Penchansky and Thomas’s model (1981). The results found some barriers to access to health care for people with developmental disabilities such as those children with disabilities from poor family backgrounds in rural areas experienced greater difficulties in accessing health care services than poor children in urban areas. Another qualitative study by Harrison et al. (2020) conducted in Malawi focused on people with disabilities living in rural areas. Harrison and colleagues built the concept of access based on the three delays of Thaddeus and Maine (1991) in combination with the conceptual framework of access of Levesques et al. (2013). Their model sought barriers in relation to financial, practical, and social factors faced by people with disabilities (Harrison et al. 2020). Despite the attention of many studies on access to health care services, there remains a significant gap in the social science literature regarding reproductive health care for people with disabilities in low-middle income countries such as Vietnam and others. It is important to fulfill this gap because the findings of this kind of research may have new contributions to this field and allow researchers and practitioners to better understand the lives of these individuals and their encounter in society.
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Conclusion and Future Directions
Access to health care services is an interesting research topic. In a few decades, this topic has been paid attention by many scholars around the world who developed the conceptual frameworks of access and measuring the access to health care services, in order to improve the quality of health care services. The literature shows that since the 1990s, scholars have started researching this topic with the well-known model of Penchansky and Thomas (1981), and it is still a good reference for current researchers. Within this chapter, the conceptual frameworks of access to health care are divided into two main approaches including the system-centered approach and the patient-centered approach (Levesque et al. 2013). Seemingly, the global public health scholars paid attention to the system-centered approaches. It is well illustrated that in the academia exists some models of access to health care services such as the behavioral model (Aday and Anderson 1974; Anderson and Newman 1973), the barrier-focused models (Dutton 1986; Frenk 1992; Penchansky and Thomas 1981), and the behavioral-ecological model (Ryvicker 2018). These global public health scholars recognized that access to health care services is the key influential factor to increase the quality of health care services and propose health care system sustainability (Souliotis et al. 2016). Thus, they developed multiple dimensions of access to health care services in order to measure the quality of access to health care. In this sense, they could recognize the obstacles, in turn suggesting effective solutions to deal with difficulties.
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Although some of the barrier-focused models in system-centered approaches, which were discussed above, are rigorous, they provided a concrete grounding for the global public health scholars, and for recent scholars to develop new conceptual frameworks of access to health care services such as the patient-centered approach of Levesque et al. (2013). This seems a more holistic model than earlier models, it could consider an appropriate conceptual framework for access to health care services in many countries. Thus, many recent researchers applied this conceptual framework of access to measure the quality of the access to health care services in certain countries (Anderson et al. 2020; Harrison et al. 2020; Suurmond et al. 2016; Ward et al. 2018). Despite the attention of many scholars on access to health care services and focusing on various characteristic populations, there remains a significant gap in the social scientific literature regarding access to health care services for people with disabilities in low-middle income countries such as Vietnam and others. Filling this gap is very important because it may fully address nuances for some vulnerable people in low-middle income countries, and the findings of this research topic may contribute new knowledge to this field.
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Kumi-Kyereme A, Seidu A-A, Darteh EKM (2020) Factors contributing to challenges in accessing sexual and reproductive health services among young people with disabilities in Ghana. Global Social Welfare. https://doi.org/10.1007/s40609-020-00169-1 Levesque JF, Harris MF, Russell G (2013) Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health 12:18. https://doi. org/10.1186/1475-9276-12-18 Liverani M, Nguon C, Sok R, Kim D, Nou P, Nguon S, Yeung S (2017) Improving access to health care amongst vulnerable populations: a qualitative study of village malaria workers in Kampot, Cambodia. BMC Health Serv Res 17(1). https://doi.org/10.1186/s12913-0172282-4 Matthews A, Walsh A, Brugha R, Manda-Taylor L, Mwale D, Phiri T et al (2019) The demand and supply side determinants of access to maternal, Newborn and child health services in Malawi. Matern Child Health J 23(11):1556–1563. https://doi.org/10.1007/s10995-019-02791-8 Ooms GI, Kibira D, Reed T, van den Ham HA, Mantel-Teeuwisse AK, Buckland-Merrett G (2020) Access to sexual and reproductive health commodities in east and southern Africa: a crosscountry comparison of availability, affordability and stock-outs in Kenya, Tanzania, Uganda and Zambia. BMC Public Health 20(1):1053. https://doi.org/10.1186/s12889-020-09155-w Penchansky R, Thomas JW (1981) The concept of access: definition and relationship to consumer satisfaction. Lippincott Williams Wilkins 19(2):127–140. Retrieved from http://www.jstor.org/ stable/3764310 Peters DH, Garg A, Bloom G, Walker DG, Brieger WR, Hafizur Rahman M (2008) Poverty and access to health care in developing countries. Ann N Y Acad Sci 1136(1):161–171. https://doi. org/10.1196/annals.1425.011 Reichard A, Sacco TM, Turnbull HR (2004) Access to health care for individuals with developmental disabilities from minority backgrounds. Ment Retard 42(6):459–470 Richard L, Furler J, Densley K, Haggerty J, Russell G, Levesque JF, Gunn J (2016) Equity of access to primary healthcare for vulnerable populations: the IMPACT international online survey of innovations. Int J Equity Health 15:64. https://doi.org/10.1186/s12939-016-0351-7 Ricketts TC, Goldsmith LJ (2005) Access in health services research: the battle of the frameworks. Nurs Outlook 53(6):274–280. https://doi.org/10.1016/j.outlook.2005.06.007 Russell DJ, Humphreys JS, Ward B, Chisholm M, Buykx P, McGrail M, Wakerman J (2013) Helping policy-makers address rural health access problems. Aust J Rural Health 21(2):61–71. https://doi.org/10.1111/ajr.12023 Ryvicker M (2018) A conceptual framework for examining healthcare access and navigation: a behavioral-ecological perspective. Soc Theory Health 16(3):224–240. https://doi.org/10.1057/ s41285-017-0053-2 Saurman E (2016) Improving access: modifying Penchansky and Thomas’s theory of access. J Health Serv Res Policy 21(1):36–39. https://doi.org/10.1177/1355819615600001 Schnake-Mahl AS, Sommers BD (2017) Health care in the suburbs: an analysis of suburban poverty and health care access. Health Aff 36(10):1777–1785. https://doi.org/10.1377/hlthaff.2017. 0545 Silva RBD, Contandriopoulos A-P, Pineault R, Tousignant P (2011) A global approach to evaluation of health services utilization: concepts and measures. Healthc Policy 6:e106–e117. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3107120/ Souliotis K, Hasardzhiev S, Agapidaki E (2016) A conceptual framework of mapping access to health care across EU countries: the patient access initiative. Public Health Genomics 19(3): 153–159. https://doi.org/10.1159/000446533 Suurmond J, Rosenmöller DL, el Mesbahi H, Lamkaddem M, Essink-Bot M-L (2016) Barriers in access to home care services among ethnic minority and Dutch elderly – a qualitative study. Int J Nurs Stud 54:23–35. https://doi.org/10.1016/j.ijnurstu.2015.02.014
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Cultural-Historical Activity Theory [CHAT] and Health in Faith Communities Elias Mpofu
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Cultural Historical Influences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Object Activity and Action Within Knowledge Systems . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 The Role of the Self and Social Mediation in an Activity System . . . . . . . . . . . . . . . . . . 3 Enacting Health Norms in the Context of Religion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Religious Institution Influences on Follower Health Norms . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Personal Influences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Reflexivity in Health Norms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Faith-Based Health Norms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Negotiated Health Norms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Privately Framed Health Norms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Competing and Complementary Health Norms with Religion Affiliation . . . . . . . . . . . . . . . . . 5.1 Singular Effect Hypothesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Competing Response Hypothesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Over-Justification Hypothesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter applied Cultural-Historical Activity Theory (CHAT) to understand how religious cultures influence the health of followers, through social norms associated with religious practices. Specifically, the chapter utilizes the CHAT, a structural analysis to examine how knowledge of institutional religious processes acts to guide followers in their health beliefs and practices. Followers may hold E. Mpofu (*) Rehabilitation and Health Services, University of North Texas, Denton, TX, USA School of Health Sciences, University of Sydney, Sydney, NSW, Australia School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_137
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religious knowledge to be self-evident truths for their identities and behaviors. In their diversities, religious institutions may be different in the extent to which they oblige followers or allow them discretion in their health practices. From a structural analysis view, religious followers who perceive a confluence between religion and secular health norms would likely adhere to public health guidelines than those who perceived significant discordance between religion and public health guidelines. Religious followers who perceive their faith teaching to contradict public health guidelines may seek to resolve the discordances through interpretive religion and/or personal/private actions. This chapter proposes three CHAT hypotheses for study to further understand how religious followers may seek the health outcomes they aspire to as people of faith. Keywords
Religious culture · Structural theory · Moral communities · Health norms · Knowledge environment
1
Introduction
Health and well-being in human populations are constructed and appropriated in the context of knowledge environments. In the context of religious institutions, followers are a moral community for the purpose of deifying a higher spiritual force they believe to give meaning to life or existence. As moral communities, religious institutions create and maintain “cooperative communities organized around deities” (Graham and Haidt 2010, p. 140). Religious institution following comes with a sense of belongingness, providing social capital, which can benefit followers through reciprocal material, psychological, and spiritual interactions (Banerjee et al. 2014; Putnam and Campbell 2010). However, religious followership can also be a health cost when the social capital is constraining and disabling (Satariano 2020; Scheitle and Adamczyk 2010). Regardless, religious following tends to have a controlling effect on follower behavior (Brenner 2001; Saroglou 2011). These controlling influences are implicit and through encoded messages about appropriate religious practices for the personal or collective reputation of followers in their spiritual reverence (Brenner 2001; Norenzayan and Shariff 2008; Saroglou 2011). However, people can be spiritual in life orientation, and yet not religious. Religiosity as adherence to institutionalized practices for achieving a goal for service of the sacred is different from spirituality, which refers to seeking something sacred, but without adherence to institutionalized practices. A sense of spirituality may include seeking experiences that transcend or move beyond everyday concerns. Variation in the knowledge norms by which people think about, and behave with respect to, the religious following is associated with health-relevant outcomes. An understanding of the religious knowledge environment in which health concepts are acquired and practiced is important for the design of public health interventions with religious communities.
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In the context of religious institutions, the embedded controlling influences of the religious knowledge environment primes followers to prioritize certain religious involvement practices rather than alternative or competing ones (Brenner 2001). Religious involvement refers to adherence to “an organized system of [religious] beliefs, practices, rituals and symbols” (Thoresen 1998, p. 415). Specifically, what a religious institution considers to be valid knowledge (epistemological foundations) and what is believed to exist or to be possible (ontological beliefs) influence follower behavior (Brenner 2001). According to Karmon (2007, pp. 622–623), “the institutional level contains within it not only messages regarding the very nature of knowledge itself. . . .[but] a comprehensive system of epistemic messages that are conveyed through practices and organizational patterns [with] messages that provide. . .ideas about the nature of knowledge itself.” Furthermore, religious followers may not be consciously aware of the influences of the religious knowledge environment on their health choices, which could be deleterious to their well-being within overtly controlling sectarian religious institutions (Scheitle and Adamczyk 2010). Commonalities across religious institutions in their homogenizing influences on follower beliefs and attitudes may account for associations between religious following and health outcomes, driven by the faith organization’s cultural-historic influences on the followers. This chapter applies a Cultural-Historical Activity Theory (CHAT: Engeström 1987, 1999; Leontiev 1981; Vygotsky 1978) analysis approach to examine the processes or mechanisms by which religious knowledge environments influence the health norms of followers in the context of (potentially) competing secular (non-religion) knowledge systems. First, it considers the relation between religion and culture to set the background for the rest of the exposition. Specifically, the chapter utilizes the CHAT to review the evidence on religious knowledge environments with health norming effects on followers, proposing the processes by which religious following may guide health practices. Second, the chapter proposes hypotheses on health norms adopted by followers from interfacing religious knowledge and private personal religiosity or secular knowledge systems.
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Cultural Historical Influences
Culture-historical activity theory (CHAT) is a perspective for understanding influences on human communities from their collective learning to address their evolving needs, as would be true with religious institutions. CHAT proposes that activity is central to giving expression to, and mediating, collective self-learning (Engeström 1999; Vygotsky 1978). Following CHAT, collective learning occurs through shared organization narratives that explain the historical and contemporary knowledge values of an organization (Karmon 2007). The organization narratives prime followers to be selectively receptive to institution-supported knowledge and ways of knowing, subordinating alternative understandings. In the context of organized religion, institutional narratives typically require the application of historical learning about the shared objects, activities, and actions that define followership. A
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CHAT approach allows for study of how religious canons rooted in the past inform present practices of organizations.
2.1
Object Activity and Action Within Knowledge Systems
As previously noted, a knowledge system has controlling effects on the behavior of those who subscribe to it. The behavior-determining attributes include culturally appropriate priority objects and the socially mediated activities and actions to achieve them (see Fig. 1). An object is anything about which conscious awareness and beliefs are constructed and toward which purposeful activity is enacted. Objects are pre-selected for prioritization by organizations as knowledge systems based on institutional narratives (epistemology) and truth-values (ontology) are endorsed by the leadership or gatekeepers. Health and well-being are objects people are aware of in their everyday living, and which religious followers may understand from their faith beliefs. A religious institution’s truth-values influence how it selects and prioritizes some canons to others, and how the members interpret the canons and to what purposes. As previously noted, religious followers may hold to religious teachings as selfevident truths for guiding their behaviors (Hulsether 2005; Whitehouse 2013). By implication and in the context of organized religion, an object (e.g., health and wellbeing) is nuanced by the institutionally endorsed God view, as are the health norms of the believers. Religious affiliation or believing, and acting on the precepts of the faith (Brenner 2001) – whatever faith it might be – is what characterizes the
Fig. 1 The social mediation of health and well-being. (Author’s original)
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uniqueness of the specific religious community, and defines its followership. Religious affiliation is a precondition for religion adherence or the extent to which a person believes to live by the religion’s knowledge precepts. It sets the stage for religious institution-supported health norms for the membership. With religious affiliation, people may adopt health norms grounded in faith-based rule-following to guide their health practices. Moreover, religious affiliation may influence the likelihood of adopting new health practices in the face of prevailing public health practices.
2.1.1 Health as an Object Objects are explained by the activities and actions that lead to their attainment. In this regard, health and well-being are objects toward which both general activities (e.g., health maintenance and promotion) and specific actions (e.g., restorative, curative, preventive) are directed. In the context of organizations, the means by which people select an object, and its activities and actions, are acquired through socially mediated norms established by others who are members, and from one’s own personal experience. Religious organization followers are also influenced in their health norms by non-religion community affiliations (determined by geography, social affiliation, education, social class) and by their knowledge of healthcare services available in their community and their perceived need for them (Idler 2014). Even in religious cultures, with their high overlap between religion and culture, people still have interaction and transactions with non-religion resources and services at local, regional, and global levels. People in religious cultures elect what non-religious or secular types of resources they require, and may overlay religious purposes or moral code ethics to justify their actions. Moreover, activities and actions that fall within the religion and non-religion practices moral code may change over time as religions and cultures re-invent themselves under their own impetus or from adaptive responses to emerging knowledge systems demands or opportunities. The secular and the religious are not necessarily opposed, as secular thinking may make it possible to distinguish religious thinking, validating it (Amesbury 2018). Moreover, activities and actions to reduce inconsistencies in moral-ethic inconsistencies with religious following in a secular world would be opportunities for followers to adapt their health practices. 2.1.2 Health Activities and Actions Activity is “a form of doing directed to an object” (Kuutti 1996, p. 27), and the object of an activity can be an idea, practice, the self, the collective of social others, or an instrument (Leontiev 1981). Action is what is done to achieve an activity. For instance, actions to restore health following the impact of disease or trauma are necessitated by the activity of maintaining and promoting personal health. The actions to achieve health and well-being may be material, psychological, and/or spiritual. Normative actions for achieving an activity are socially mediated, and in religion, the community must be consistent with the accepted or assumed knowledge values that define the religious community. For example, prayer may be a key health
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restorative action for the activity of health maintenance and promotion. Seeking medical consultation may also be a health action to result in health and well-being for service to a higher power or to atone for personal spiritual failures. In other words, health actions are best understood against the backdrop of institutionally supported health activities. This means health and well-being are realized in an activity system, which determines the actions or processes and tools to facilitate it. Secular health knowledge is transmitted through public health activities and actions. In this regard, secular public health practices may influence how religious followers interact with public health services. For instance, in the context of public health, the goal to maximize health and well-being for the individual and the community directs both activities (e.g., health maintenance and promotion) and actions (e.g., restorative, curative, preventive) to attain said goal, regardless of religion following and in religion-neutral ways.
2.2
The Role of the Self and Social Mediation in an Activity System
Relationships shape the way in which people think and feel about different health behaviors. There is implicit social control of health behaviors by social affiliations, regulating behaviors directly (through guidance, reminders, or penalties tied to the implementation of a health behavior change) or indirectly (through a feeling of obligation and responsibility to others) (Brenner 2001; Mpofu 2018; Whitehouse 2002). Religious affiliation and social mediation influences health norms through moral directives, spiritual experiences (which solidify moral commitments), role models, and community and leadership skills (e.g., participation in faith belief rites) (Brenner 2001). Activity within a knowledge system is driven by the object or motive for it (as institutionally defined), while individual actions are directed at goals to achieve the purpose behind an activity (the pursuit of which also may qualify individuals for membership in the organization) (Leontiev 1981). Thus, there is a social or organizational motive for engaging in activity toward an object which overlays the specific actions individuals may take in relation to the object. This person-organization system reflexivity allows for a nuanced view of human activity as dialectical, both social and individual, with neither serving as a starting point for explaining the other. Hulsether (2005, p. 502) contends that “often different people from the same religious group have conflicting ideas,” which could result in “intra-religious competition.” Applied to health and well-being within the religious following, this suggests that on the one hand, religious institution knowledge systems predetermine priority health and well-being activities (and actions) for the membership to seek to achieve. On the other hand, the individual members may also select specific activities (and actions) for health and well-being within the rules of the religious institution. This relationship allows for interpretative participation in religious institution activity systems by individual followers, which would explain possible differences in health norms of members in the same religious community.
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The dual affiliation of religious institution followers to both religious and secular knowledge values introduces complexity to the construction of health norms. This is due to demands on religious community members to reflexively reconcile what may be contradictory influences from the religious knowledge environment or between religious and secular knowledge environments (Mpofu et al. 2011).
3
Enacting Health Norms in the Context of Religion
The construction and enactment of health norms by religious followers are dialectically influenced by the religious institution’s knowledge system rules and by personal interpretations of the rules in the context of secular influences. These institutional influences on health norms presuppose adherence to certain sanctioned actions expected for good standing as a member of the religious institution. Good standing or followership implies the adoption of religion-based health norms (Ysseldyk and Anisman 2011). Religious community followers must of necessity interact with secular public health services, which makes for a transactional process in which followers select and implement health and well-being actions (e.g., lifestyle choices) drawing on the knowledge environment most salient to the follower for health and well-being (e.g., health promotion). Thus, with religious affiliation, followers generally construct and enact health norms consistent with their religious institution knowledge system, obliging implicit rule-following. However, contradictions are bound to arise for some in adopting and enacting knowledge system health norms. The sources of the contradictions may emanate from (1) competing for knowledge systems and/or personal preferences; (2) interpretations of knowledge system prerogatives in the context of evolving health needs; and (3) a shift in how people practice their religiosity, from congregating to more personal and private (Fox 2009). In the latter case, people of religion may also prefer to not formally belong to any one-religion organization, believing in a higher authority and not engaging in religious institution practices (Pew Research Center 2019). Thus, the direct effects of the religious following on health and well-being may be better understood from the interplay of institutional and personal priorities of followers (as explained in the next section).
3.1
Religious Institution Influences on Follower Health Norms
With religious affiliation, followers prioritizing activities and actions for health and well-being may reflect the rules of the religious institution. These religious ruleobliging influences on follower health norms might occur through coercive, normative, and mimetic rules (Mpofu 2018; Fig. 2). Coercive rules are those obligatory teachings, adherence to which confers a religious identity (Brenner 2001; Saroglou 2011). Normative rules are those the membership acquires from participating in typical religious community activities or its “how we do business” climate. Mimetic rules are modeled after follower community others’ actions expressing a religious
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Institutional Influences
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Health Norms Fig. 2 Religion knowledge environment effects on health norms. (Author’s original)
identity defined by the core knowledge values of the religious community (Mpofu 2018).
3.1.1 Normative Rule Adherence Effects The normative actions for achieving a religious activity are socially mediated to align with implicit religious knowledge values for followers (Brenner 2001). The particular faith practices (activities and actions) for health and well-being might be similar across religions, while the imputed meanings or significance would be differently contoured by the doctrinal emphasis of the particular religious institution, secular health norms, and personal health values (Chopra 2012; Masters and Spielmans 2007). For example, the religious activity of prayer may be a key
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instrument for health restoration, health maintenance, and promotion (Masters and Spielmans 2007). Prayer also may serve as penance within a vengeful view of God (Chopra 2012), or as grateful supplication with a prosperous view of God (Shariff and Norenzayan 2011). In other words, health activities or actions by religious followers are best understood against the backdrop of the followers’ religious affiliation, which is underpinned by the religious knowledge value. For instance, one religious community may regard health and well-being as gifted (implying divine ordination) rather than achieved (implying individual volition). Another religious community may also teach a health view in which poor health is retribution exacted by a higher spiritual force. Gifted Health Statuses. Followers with a belief in a loving and generous God consider health well-being one of the spiritual gifts from a higher power. In this case, the object to maintain health and well-being is motivated by enabling service and gratitude to the higher power, reaping the rich spiritual and material rewards that follow from living according to the faith. Religious followers with a health-gifting belief (or benevolent view of a higher spiritual force) might adopt resilient health norms, in which they experience less health-related worry or stress, believing their health support needs to be taken care for by a benevolent God (Clements and Ermakova 2012). These followers also might be willing to take non-moral risks, believing they are protected by their benevolent God (Kupor et al. 2015), although the evidence for this effect is tentative (Gervais et al. 2020). In addition, with a health-gifting view of God, religious followers might also seek healthy lifestyles if they believe they are divinely directed in their choices. Religious followers may adhere to a health norm of discounting setbacks from coping with adventitious and chronic illness or disease, believing that God in His grace would allow only as much disease debilitation as they can handle (Bradshaw et al. 2010; Mpofu 2018). For example, people living in material deprivation and believing in the gift of the afterlife enjoy positive mental health, rewarded by their sense of faith and spirituality (Bradshaw et al. 2010). Thus, religious followers with a gifted health view may believe in an unconditional healing relationship with God that surpasses any personal effort or sacrifice. In addition, religious followers with a health-gifting view of God also might choose to adopt and enact healthy lifestyles as part of their activity with respect to a higher spiritual authority. For instance, they might help others in adversity to cope with their stress by offering support to overcome the difficulties. Prospectively, followers with a debilitating illness or prolonged decline in health and function may consider resilient living the gift of life, believing that disease may not cause people to die at a time other than God’s choice. Those with a gifted health view may not perceive suffering from any cause as a sign of evil, because they expect to overcome the suffering, God willing. Some may transform their suffering into personal growth, while others may decline into misery. Retribution Health Statuses. With a belief in a punishing God, religious followers may consider their illness as a punishment for their sins (personal failures, misdemeanors, spiritual decadence) and/or an indicator of how [bad] their relationship is with the higher spiritual authority for which they must pay a price (Chopra
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2012; Mpofu 2018; Shariff and Norenzayan 2011). Self-blaming for poorer health would add to their health distress and risk for adopting unhealthy lifestyles (like eating less healthy foods, and binge alcohol drinking). They also may be less inclined to seek healthcare from public health services, expecting to grow spiritually from the pain and anguish visited on them for having wronged a higher spiritual force (and for which they would pay with penance suffering). Paradoxically, people with a vengeful view of God may also expect to grow from their debilitating ailment, from overcoming it and proving their spiritual worth to their higher power. While the knowledge environment for believers in a benevolent God is different from that of those perceiving a vengeful God, Shariff and Norenzayan (2011) also found that believers in a benevolent God were more likely to cheat in a quiz game than those who believed in a vengeful God. Moreover, various positions are possible along the continuum of gracious health gifting and penance suffering, making for differences in health norms among followers of the same or alternative religious traditions.
3.1.2 Coercive Rule Adherence Coercive rule adherence occurs when religious community followers perceive themselves to be obligated to carry out health and well-being activities and actions aligned with their religious teachings, without regard to the objective evidence for them (Brenner 2001). Thus, religious followers may refuse proven, beneficial secular health services, including their rejection of lifesaving maternal services (Ugwu and de Kok 2015) and pandemic vaccinations (Martínez-Torrón 2021). Similarly, religious followers perceiving faith-based obligations may risk their health, and that of networked others, by refusing lifesaving blood and organ donation (Ghaly 2012; Oliver et al. 2011), and eschewing to access primary healthcare services for treatable if not curable health conditions. The resulting suffering is a disvalued experience, and religious institutions lie on a spectrum in their coercive practices, some more extreme than others (Adams 2007). Followers, in their compliance with coercive religious practices, may comply or elect more discretion in adhering to some religious rules, roles, and values than others. There is, therefore, diversity in health and well-being outcomes for religious followers flowing from their perceived behavioral obligations to their religious institution. 3.1.3 Mimetic Rule Adherence Mimetic health norming occurs when religious followers seek to align their health and well-being promotion activities and actions to those of other followers (Dwyer et al. 2013; Satariano 2020). People seek to maintain psycho-behavioral consistency in their attitudes, and social judgments or perceptions of the self in relation to others (Whitehouse 2004). Allport and Ross (1967) distinguished between intrinsic religiosity (based on deep conviction motivation) and extrinsic religiosity (based on mimetic behavior motivation). Followers with extrinsic religiosity are motivated largely by the need to belong to the collective, adopting religious practices for social self-enhancement, even as they may be less committed to religious teachings.
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With mimetic rule adherence, followers may perceive the benefit of religious social capital translated into everyday living, including their health and well-being activities and actions (Satariano 2020). Moreover, mimetic rule adherence may evolve into identity fusion (Swann Jr. et al. 2012), by which followers believe themselves to be primarily defined by their religion, resulting in an expanded view of the self as the corporeal embodiment of the group, so that the individual is the group in-person (Whitehouse 2004). The belief in being larger than the person, with a diffusion identity, can have health and well-being consequences for both the good of others (as in extreme charitable acts; Swann Jr. et al. 2012) and bad to others (as in religion-inspired suicide bombings; Whitehouse 2018).
3.2
Personal Influences
Personal influences on the health norms held by religious institution followers occur from learning and experience with secular-aligned indicative (evidence-based), derived (practice-informed), and reference (community standard) norms (Mpofu 2018). Implementation/adoption of these health norm types by followers may span the three types, with the particular emphasis varying by religious core teachings.
3.2.1 Evidence-Informed Health Norms Evidence-informed health norms are science-driven, representing the best knowledge at both individual and community levels (Mpofu 2018). Science-led health norms include those based on epidemiological studies and biomedical clinical studies. Increasingly, these studies are also inclusive of religious practice in populations guided by faith communities (Idler 2014). Biomedical science has also collaborated with indigenous religion followers to study complementary and alternative therapies they may be practicing (WHO 2010). Nearly all the religions of wide dispersion (e.g., Judaeo-Christian, Islamic, Buddhist) have strong track records in providing biomedical health services to communities, mostly as charitable or notfor-profits (Brodman 2009; Daneshgar 2019; Weller et al. 2018). The types and extent of biomedical science practices that such a religious organization engages are aligned with its teachings, within the limits of evidence-informed health practices, with followers or the general public who use their facilities (Freedman et al. 2018). However, as previously noted, religious organizations may also deny followers access to proven biomedical interventions they consider inconsistent with their core religious values. 3.2.2 Derived Health Norms Derived norms are from practice-informed evidence or lessons from successful practices to protect and promote health (Mpofu 2018). As previously noted, religious organizations have historical and current practice-based procedures protective of the health and well-being of followers (Mpofu 2018), although some practices may be
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harmful to the health of followers (Idler 2014). Religious institutions may adopt practices to healthcare challenges if they recognize current or emerging needs, although much depends on the lag between recognition of health needs and practices that would present a solution. Religion institutions could be more responsive to followers’ health support needs in their diversity. Moreover, at the individual follower level, derived health norms may be from self-lessons, gained over time managing health matters, and a sense of personal agency based on those experiences. High personal agency is associated with making choices that make a difference in one’s own life, which may be different from institutionally supported choices. By contrast, the low personal agency may result in a health-compromising failure to engage in health-promoting actions.
3.2.3 Reference Health Norms Reference norms benchmark those of the community of affiliation (Mpofu 2018). Religious followers may be somewhat more aware of the health norms and tools for similar faith followers, even in the narrower sense of their particular religious organization and followers at the local community level (Ögtem-Young 2018; Satariano 2020). Followers with an extrinsic religious orientation may be more likely to observe reference health norms, compared to those with intrinsic religion orientation. Those with extrinsic religiosity have an instrumental approach to religion, in which social membership is the primary reward for behaviors, rather than the religion’s moral convictions (Allport and Ross 1967). While intrinsically held religious beliefs are not always morally conservative (Mpofu 2018), and intrinsic religiosity has a social aspect (Van Camp et al. 2016), it is likely that those with an extrinsic religious orientation perceive their religious social network as a primary guide to their health activities and actions (Schwarz 2013).
4
Reflexivity in Health Norms
Reflexive or interpretive health norms emerge from resolving contradictions among religious knowledge claims and/or between religious and secular knowledge claims (Mpofu 2018) (see Fig. 3). These contradictions can result from contestable a-priori assumptions about what is and/or counts for admissible evidence for a religious practice, calling for reflexive norms. Reflexive health norms are associated with voluntary actions for health promotion in the best interest of the self and networked others. At the extremes of religion and secular knowledge influences, there may be mutual disvaluation of evidentiary claims, with religious followers dismissing “contrary evidence as a temporary setback, an insignificant exception to the rule, or as evidence of something other than ‘religion’ at work” (Fox 2009, p. 302). There is also a continuum of health belief positions between the extremes of religious conviction. This person-organization system reflexivity allows for a nuanced view of health and well-being which is both social and individual, guided by negotiated or privately framed health norms (Pew Research Center 2015).
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Fig. 3 Epistemological framing of health norms. (Author’s original)
4.1
Faith-Based Health Norms
For those with religious affiliation, faith influences predetermine priority for health activities and actions, within the rules of the religious institution (Mpofu 2016; Mpofu et al. 2012, 2014). Followers prioritize adherence to religious teachings and practices for their health norms. With religious affiliation, followers may premise their health activities and actions on faith precepts, foregrounding these precepts for their health protection, promotion, and sustenance. In this case, followers consider their religious knowledge system both necessary and sufficient to explain and guide their health practices across life domains: nutrition and dieting, relationships, exercise, mental and spiritual well-being (Badanta et al. 2020; de Diego Cordero and Badanta Romero 2017; Koenig and Al Shohaib 2014; Nath 2010). For example, Mormons subscribe to a view of the physical body as a temple to protect with health practices such as non-use of substances for a healthy body/temple, spiritual living, and good interpersonal relationships, with church leaders as health promoters (Badanta et al. 2020; de Diego Cordero and Badanta Romero 2017). Similarly, Buddhist and Seventh Day Adventist bio-spirituality influences their everyday food habits and practices, as well as social and physical activities (Nath 2010). Life expectancy tends to be higher among religion identity followers (Ofstedal et al. 2019), explained by religious lifestyle guidelines.
4.2
Negotiated Health Norms
Negotiated health norms may emanate from a need by faith community members to access health services premised on secular knowledge values and motivated by the intended outcome (Ogolla 2015). As an example, the health and well-being activity of Planned Parenthood (if religious institution approved) may be achieved through the use of contraceptives (which may be a religion-proscribed activity). This
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contradiction calls for resolution by some religious people, who may adopt negotiated health norms such as parenting with naturalistic fertility control options. Others of faith may resolve the contradiction by construing fertility control with contraceptives as one of the choices divinely given by a higher spiritual authority. Institutional faith-based norms may also shift to facilitate adoption of preferred Planned Parenthood options in the absence of explicit institutional endorsement, such as when a religious organization is silent about fertility control policy (allowing for the private framing of a health activity or action). People with religious affiliation also may be influenced in their personal health norms by secular health norms, different from those of their religion (Mpofu 2016; Mpofu et al. 2021), electing to adopt negotiated or privately framed health norms based on their secular understanding of health norms. As previously noted, a follower’s religiosity may explain the potency of religion as opposed to secular influences on health behavior choices. For that reason, negotiated health norms among same-religion community followers can vary, influenced by the importance placed on religion-secular influences.
4.3
Privately Framed Health Norms
Religion followers may elect discretionary health guidance following their own beliefs, understanding their religious values (Fox 2009; Mpofu 2016). People have a need to be in control of their health outcomes (Ng et al. 2012), and the ways they act on their health needs are to some extent dependent on their private sense of personal agency, even among religious followers. Personal agency serves to reorient activities and actions for health and well-being in the context of evolving health needs and care service opportunities (backgrounding or foregrounding religious beliefs). This includes a sense of choice over health needs recognized as dependent on religious or secular knowledge, the health needs individuals choose to address, and the means for doing so. In other words, personal agency with private framing of health norms allows for response shifts in understanding and meeting evolving healthcare needs, with or without religious interpretation. Response-shift theory (Schwartz et al. 2007) concerns how people manage behavioral dissonance from seemingly discrepant knowledge sources about how to achieve a desired social outcome. A response shift occurs when a person changes the meaning regarding a situation by (a) changing his or her private framing or internal standards for it (i.e., scale recalibration); (b) changing the valuing of the elements of the situation (i.e., relative importance of the health practice); and (c) redefining the problem space (i.e., reconceptualizing a health practice in the face of new evidence). For instance, a religion follower may undergo a response shift in health norms influenced by such events as a debilitating health condition or end-of-life considerations. In the case of a degenerative health condition, early-stage coping may involve religious texts and symbols for health and well-being, adhering to core faith teachings (Clements and Ermakova 2012). Later or terminal stage coping might involve surrendering mortality to the higher spiritual authority (Pargament et al. 2004).
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Religious individuals managing chronic illness or experiencing fluctuations in recovery may shift from religious institution-oriented to privately framed health norms, such as seeking public health evidence. Thus, privately framed health norms are person centered and change based on a person’s health needs.
5
Competing and Complementary Health Norms with Religion Affiliation
The previous discussion considered the likely evolution of health norms with diversity in religious adherence. Of interest is the comparative influence on health norms of contradictory and complementary social influences, to which a person (or a social collective) is ordinarily exposed in everyday life. As noted previously, health norms with or without religious affiliation may be positive or deleterious in their effects on health and well-being. There is a “need to move the research field away from describing monolithic relationships of religion and health, toward an approach that recognizes that salutary effects associated with religion are contingent on what a person believes and how he or she identifies religiously” (Speed and Hwang 2019, p. 297). Theory and evidence are basic to a deeper understanding of potential religious environment mechanisms that may explain follower health behaviors and suggest how distinct religious and health orientations can inform public health interventions. Within a mediational framework, the central questions of interest are largely about the ways in which religious relationships may organize, shape, constrain, or drive health-relevant behaviors of followers. Three hypotheses may explain the likely effects on health norms with alternative knowledge values emphases: singular, competing, and over-justification (see Fig. 2).
5.1
Singular Effect Hypothesis
It may be that only the priority institutional affiliation of individuals or collectives influences their health norms, as would be predicted by CHAT. Committing to religious goals and practices, creating and acting on plans for achieving those goals, and avoiding distractions and obstacles from competing knowledge systems, all require behaviors with health and well-being implications. In this case, higheradherence religions can allow for greater obligation of resources to collective religious practices associated with health outcomes aligned with those practices. As an example, religious followers used adaptive, emotion-focused coping strategies more successfully with COVID-19 mitigation constraints than did the non-religious (Abbott and Franks 2021; Seryczynska et al. 2021), suggesting a singular religiosity effect. However, the singular effect hypothesis would also be true for non-religious people who prioritized non-religion coping styles. For instance, Abbott and Franks (2021) reported lower depressive symptoms and higher post-traumatic growth among the non-religious compared to the religious, which is consistent with a
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singular effect hypothesis. If non-religious believed in their “ability to make sense of the world, in whatever way,” they might have improved health from sense of control in problem-solving their life situation (Abbott and Franks 2021, p. 2397). In support of the singular effect hypothesis, theists and non-theists were comparable in sense of happiness, which may be explained by a sense of life coherence (Speed and Fowler 2021). In this case, the singular, targeted influence from a primary social influence system would explain the person or collective health norms so that theists would have a sense happiness explained by benevolent higher spiritual authority. In contrast, non-theists may ascribe their happiness when they perceive life events to make sense premised on their actions in the present with no reference to a spiritual authority. In fact, a curvilinear relationship has been reported to exist between (non-)religiousness and well-being, so that those with high levels of non-religiousness/non-spirituality reported higher well-being as compared to those with medium or low levels of (non-)religiousness/(non-)spirituality (Galen and Kloet 2011). This may be explained by those at the singular effect hypothesis by which those at either end of the (non-)religiosity are less conflicted about sense making their life situations. Singular adherence to particular knowledge value system norms also carries the strength of clarity of health norms, inclusive of the processes and tools for actualizing those norms. However, a singular and targeted focus on a faith (or secular) knowledge value system may also carry the risk of harm from its blind spots, leading to skewed health norms (Speed and Fowler 2021).
5.2
Competing Response Hypothesis
Competing institutional religious and personal/secular affiliations may have a subtractive effect on health norms (see Fig. 3). This subtractive effect results when the knowledge values of one system (i.e., religion) generate competing responses to those of the alternative system (i.e., personal, secular), with each resulting in weaker health norms than would be the case with adherence to a singular knowledge value system (i.e., institutional religious or personal-secular). For instance, people with moderate levels of (non-)religion following had lower self-reported health outcomes compared to the highly (non-)religious (Galen 2018; Galen and Kloet 2011). From a competing response perspective, people with moderate religiosity may be less confident in their worldview (Galen and Kloet 2011), which can deplete their commitment to engage in religion practice behaviors, which in turn may have health consequences for good (when health promoting) or for bad (when health deteriorating). Moreover, “those with weaker beliefs are actually less happy than those who do not ascribe to any religion—atheists and agnostics” (Mochon et al. 2011, p. 1), suggesting the potential for distress from competing values in their lives. The evidence on the competing response hypothesis is less well-documented, and the bulk of studies have tended to simply contrast religion–non-religion health
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outcomes, with little regard for differences along the continua of religious and non-religious belief (Galen 2018; Speed and Fowler 2021). Regardless, the proposition has merit that when people process two potentially competing health norms, religion and personal/secular, with less commitment to either, health outcomes may be weakened. However, for some individuals, interacting with competing knowledge values may have the benefit of enabling adaptive learning from attempts to resolve contradictions between the competing systems through reflection, resulting in strong negotiated values. The cognitive effort required to resolve apparently contradictory knowledge values can lead to higher personal investment in, and commitment to, the resultant negotiated health norms.
5.3
Over-Justification Hypothesis
Institutionalized religion and personal-secular knowledge values may overlap in some respects. For instance, religious teachings on belief in divine control may overlap with a personal sense of control over one’s life as God’s gift of free will. In this case, personal sense of control, seen as both a secular concept and a gifted divine status, serve the same end, promoting health and wellbeing. Personal sense of control mediates the belief-health relation through a complementarity effect. If religion followers find personal control from adherence to faith teachings sufficient for their health maintenance or sustenance, seeking additional guidance via secular standards would be over-justification. Religious followers may also see forgiveness as a divine teaching, helpful to spiritual and mental health and well-being (Lawler-Row 2010; Webb et al. 2013). Similar effects exist for non-religious individuals who may also derive mental health and well-being from forgiving wrongs (Lawler-Row 2010; Toussaint et al. 2015). In the latter case, non-religious people consider forgiveness an enabling social action which needs no religious attribution. To the non-religious, imputing divine ordination to personal control and/or forgiveness for mental health is an over-justification of actions sufficiently explained by rational thought. At the same time, for religious followers the effects on health norms of exposure to two knowledge value systems may be additive, resulting in strong health norms from redundant learning pathways: religious teachings supported by secular standards. Non-religious people may derive a similar benefit from multiple desirable secular standards. Similarly, knowledge to avoid situations that would lead to health risk from temptation would be endorsed by religion-informed knowledge systems as well secular systems, although differently explained. A religion-oriented explanation would attribute the behavior to religious teachings (Clements and Ermakova 2012), whereas a secular explanation might, for example, foreground ego resource management in which self-control in the face of hedonistic urges would lead to conserving ego resources (Fishbach et al. 2003; Freitas et al. 2015).
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However, this strengthening of health norms from the redundancy of knowledge system effects does not necessarily occur. Ryan and Deci (2000, 2015) proposed a self-determination motivational response to explain instances where apparently positive outcomes appear overly rewarded. As an example, people with either institutional religious or personal-secular knowledge may consider their specific health actions over-justified, diminishing self-direction and resulting in non-committal or neutral-strength health norms. People may also be driven in their choices by a belief in self-determination of social outcomes (inclusive of health) (Ng et al. 2012), so that knowledge systems do not result in different choices than they believe they would have made from their private framing of health norms. Additional studies to directly test the over-justification hypothesis or the comparative effects on health norms of complementary knowledge environments with the same cohort of participants would be informative.
6
Conclusion and Future Directions
Religion constitutes a unique knowledge environment with consequences for the health and well-being of followers. This health-religion relation exists, in part, because religious knowledge influences the processes by which religious people understand and act to maintain or promote their health and well-being. Knowledge environment qualities prime religion followers to adopt certain health practices rather than alternative or competing ones. Health and well-being are both a state of being and a sociocultural outcome. For that reason, religion and cultural underpinnings contour people’s claims to health and well-being through their social affiliations, obliging religious rules, roles, and values. Religious followers acquire health and well-being knowledge rules, roles, and values through social mediation with others and motivated by their bonding to the religious institution with which they identity. The extent to which individuals adopt a faith-based or personal health identity mediates their health activity actions, including adaptive learning. Opportunities for discretionally or negotiated religion practices or their abandonment may allow for uptake of public health practices influenced by evolving secular (non-religion) knowledge systems. From a structural analysis perspective, religion followers may not be consciously aware of religion in relation to cultural influences on their health practices, and if they are, they may choose to question the discordance. This may prove uncomfortable (among dogmatic followers) or liberating (among exploratory followers). Regardless of their position on the religion for culture or religion as culture issue, followers may adopt a strategy for resolving contradictions in messages for health and well-being within their practiced religion, and in the context of secular knowledge system influences. Future directions include CHAT-led hypotheses testing of propositions on how faith community followership influences health and well-being outcomes.
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Understanding the mechanisms by which faith-based organizations as knowledge environments influence health norms among the membership is important for health protection and promotion with them. Engaging faith organizations as agents in public health programming, considering the feasibility and acceptability of health interventions with alignment with the institutional values and personal predispositions of religion followers would optimize health support interventions with faith communities.
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Institutional Change and Healthcare Social Workers’ Identity: An Analysis from the Street-Level Perspective Andrea Bellini and Dario Raspanti
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Professional Identity and Identity Crisis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Social Change and Changing Institutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Being Street-Level Professionals in a Changing World . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 The Impact of Neoliberalization on Professional Identity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 The Covid-19 Pandemic As a Game Changer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
The COVID-19 pandemic is only the most recent challenge for healthcare professionals. Critical change processes, synthesized in the terms neoliberalization, globalization, and digitalization, have affected institutional settings and workplaces and altered work practices and working conditions in this professional area. Such processes have also influenced how professionals perceive their roles and interact with managers, peers, and users, calling into question professional identities. This chapter focuses on healthcare social workers – namely, social workers who work in healthcare facilities and collaborate with other professionals to address complex situations – arguing that they have been severely hit by the above changes and are further threatened by the COVID-19 pandemic. Based on a literature review, the analysis shows that neoliberalization is the fil rouge that connects social, institutional, and professional change and identifies new public management as a factor that significantly modified social work practice in A. Bellini (*) Department of Social and Economic Sciences, Sapienza University of Rome, Rome, Italy e-mail: [email protected] D. Raspanti Department of Political and Social Sciences, University of Florence, Florence, Italy e-mail: dario.raspanti@unifi.it © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_34
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healthcare. Street-level bureaucracy literature, though, revealed ambiguous effects on social workers’ discretionary autonomy. Then, while it is clear that the pandemic crisis has affected work organization and working conditions, its impact on identity dynamics is nebulous. Keywords
Neoliberalization · Managerialism · Pandemic · Institutional change · Healthcare social workers · Professional identity · Working conditions · Street-level bureaucracy
1
Introduction
The COVID-19 pandemic has come unexpectedly and affected global health with an unpredictable force and imponderable trajectories. However, it is only the most recent challenge for healthcare professionals. Critical change processes, synthesized in the terms neoliberalization, globalization, and digitalization, were already at play before the pandemic crisis. Such processes have affected institutional settings and workplaces and altered work practices and working conditions in this heterogeneous professional area. They have also influenced how healthcare professionals perceive their roles and interact with managers, peers, and users, calling into question professional identities. Among the various professional figures, scholarly research has nevertheless concentrated on physicians and nurses. This chapter reviews the literature focusing on social workers who operate in healthcare, assuming that they have been severely hit by the above changes and threatened by the pandemic. These social workers, referred to as healthcare or medical social workers, are employed in a variety of organizations, such as hospitals, outpatient centers, mental health clinics, rehabilitation facilities, nursing homes, child welfare agencies, and schools. In these contexts, they help people handle health issues, exerting functions of assistance and coordination across the phases of care, from admission to discharge and return to home, addressing special issues and complex needs. To this end, they collaborate with other professionals, like physicians, nurses, physical therapists, and administrative staff. As such, they are a particular type of social workers, whose identities are shaped by the interaction between different organizational and professional cultures, in conditions of structural weakness in the workplace. The argument of this chapter is that, among change processes, the rise of managerialism, especially in the form of new public management (NPM), has further weakened healthcare social workers’ identity to such an extent that it configured an identity crisis. Far from being “passive victims” of change, though, these social workers engage in continuous identity work, which contributes to shaping institutional change. In this regard, street-level bureaucracy (SLB) scholars put a great deal of emphasis on discretionary autonomy as a constitutive element of social workers’ identity, which enables them to “make public policy” at the frontline. On the other
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hand, they called attention to the ambiguous effects that managerialism had on social workers’ ability to influence decision-making and work practices. Recently, the COVID-19 pandemic has posed further challenges to social work, especially in healthcare settings, which were invaded by the contagion in the emergency phase. While it is clear that the pandemic crisis has had immediate effects on work organization and working conditions, its impact on identity dynamics is, instead, nebulous. The chapter addresses these issues, in the first place, by defining the concepts of professional identity and identity crisis and identifying their link with institutional change. Then, it describes the most critical processes of social change, recognizing neoliberalization as the fil rouge that connects social, institutional, and professional change. After that, it introduces the SLB theory. The following sections assess the impact of neoliberalization on healthcare social workers’ identity and attempt to respond to the question of whether the pandemic has played a role as a “game changer” or not. The conclusion summarizes the main points and reflects on the implications for global public health.
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Professional Identity and Identity Crisis
Since the eighties, social work has undergone a profound transformation. It has been hit by critical change processes while undergoing professionalization, although to different extents in different countries across the globe. As a matter of fact, it was affected by such processes before it could develop a robust professional identity. Accordingly, scholars have drawn a picture of social work as a “weak” profession struggling to free itself from its traditional definition as a semi-profession. This image is associated with the idea of the challenging nature of social work, strictly linked to its “paradoxical position serving the interests of the state, their managers and, in contrast, users or carers,” which translates into “structural-induced tensions” intensified by “workloads, responsibilities and stress” (Carey 2015, pp. 2413, 2415). It is unsurprising, then, that identity in social work has received much attention in the international literature and that part of this literature has tended to describe the “crisis in social work” as “a matter of professional identity” (Asquith et al. 2006, p. 8). As Webb (2017, p. 5) noted, the concept of professional identity has a “contestable and changing nature.” This is due to its being situated and temporary, related to changes that occur at the professional, organizational, and societal levels. Moreover, it is relational and biographical as it implicates “actors in a system of actors” and “types of trajectories during working life” (Dubar 2010, p. 95; own translation). Therefore, it is intrinsically plural, defined as “socially recognized ways for individuals to identify with each other in the field of work and employment” (p. 95). In the strict sense, professional identity has to do with “being professional,” which “suggests an ontological location, whereby [. . .] [the professional] is existentialized through the particular narratives and discourses which accrue with and around that
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identity position” (Dent and Whitehead 2002, p. 5). As such, it is “neither stable, nor a final achievement” but “a process, never-ending and only fixed in that it exists and draws its meaning and ontological anchor in relation to the ‘Other’; that which it is not, or which it does not desire to be” (p. 11). Identity crisis itself is a useful concept to understand how the above changes have impacted the social work profession. This term refers to the failure “to handle the discontinuities that have flourished in late modernity,” which implies “a breakdown or an overload of an individual’s ability to ‘stitch together’ a coherent self-image” (Ebert 2012, p. 33). That said, as Carey (2015, p. 2415) pointed out, “some people may cope with change better than others and identities are unlikely to be successfully imposed and colonised from above by management in ideological arenas such as the workplace.” This entails that, while seen as “intimately locked into aspects of organizational culture” (Webb 2017, p. 9), social workers’ identity – just like any other type of professional identity – is the product of ongoing identity work (on this concept, see Ibarra 1999), which occurs in the context of subjectivity, although reconducted to a coherent epistemic framework. Furthermore, identity work is somehow related to institutional work, as the literature on the micro-foundations of institutions suggests (see Powell and Colyvas 2008). In this view, professionals are assumed to contribute to consolidating or even giving rise to a professional project in organizational contexts while striving to construct or maintain their identities; organizations, in turn, tend to institutionalize professional identities and roles while attempting to manage their workforces (Muzio et al. 2013). The case of healthcare social workers complicates the picture. As noticed, these social workers operate in various healthcare settings, where they come in contact with multiple professional figures. Their identities are, thus, influenced by organizational and professional cultures, which bring into play different mixes of values, beliefs, and customs. To cope with this complexity, Beddoe (2011) drew on the Bourdieusian theories of fields and capitals. “Practitioners,” she suggested, “construct their professional identity within these complex, often hierarchical fields,” conceptualized as “sites [that] contain complex sets of power relations” (p. 36). The author then used the concept of professional capital, the sum of “power, mandate, trust, expertise and some form of public exchange of value” (p. 27), to characterize social workers’ uncertain positioning in social fields and demonstrate their lack of a distinctive space.
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Social Change and Changing Institutions
In the last fifty years, society has radically changed. With the rise of post-industrial society, knowledge became a relevant production factor, and those who have control over it, namely, experts, played an ever-greater role. Two concurrent developments aided this process. Globalization facilitated the transnational mobility of products, services, and workers. It also created the conditions for a new global division of labor between advanced countries, devoted to the production of knowledge, and emerging countries, where the production of physical goods was delocalized.
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Digitalization brought improvements in work processes in terms of increased efficiency and reduced costs but gave rise to new forms of inequality. Combined, these processes have altered the composition of the workforce worldwide. The number of expert occupations – and, among them, professions – has rapidly increased (Bellini and Maestripieri 2018). Post-industrial transition, globalization, and digitalization have intertwined with neoliberalization. The latter is the process through which neoliberalism has permeated and redirected social change by redesigning institutions. As such, neoliberalization pulled these change processes out of their seemingly ideological neutrality, giving them new meanings and objectives. While endogenous to the productive sphere, the post-industrial transition has benefitted from neoliberal policies. In the 1980s and 1990s, state governments pursued deregulation in employment contracts in almost all advanced countries, although to different extents. The main outcome was a progressive loss of the preeminence of “standard” employment in favor of a plurality of “non-standard” jobs, with the continuous increase of temporary employment and self-employment. Besides, an exogenous process, the democratization of education, pushed women to enter post-industrial labor markets massively, finding positions that required knowledge and relational skills (Bellini and Maestripieri 2018). Public-sector employment created new job opportunities for women, also due to NPM’s emphasis on management and leadership (Berg et al. 2008). The other side of the coin was the reconfiguration of professional fields, with female-dominated professional groups, such as social workers, relegated to subaltern positions or niches (Bolton and Muzio 2008). Globalization has made it easier for professionals to travel outside their countries of origin to provide professional services. Country-based neoliberal policies entered this process by interacting with demographic and occupational dynamics on a global scale. In advanced countries, the retrenchment of public funding created labor shortages while population aging raised the demand for healthcare services (see Ruhs and Anderson 2010). In emerging countries, the growing number of healthcare professionals constituted a new reserve of labor supply. Consequently, chains of international migrations of skilled professionals developed from the Global South to the Global North (Bourgeault et al. 2016). Digitalization, defined as the adoption of computer-aided technology and the diffusion of the Internet in a way that pervades all spheres of social life, has influenced social change in multiple ways. In professional work environments, it created new channels to express the demand for services and gave professionals new instruments to supply services in a prompt and economical manner. Furthermore, it changed how expert knowledge is produced and conveyed, impacting their capacity to control labor markets and client relationships (Bellini and Maestripieri 2018). However, neoliberalism found in digitalization a key to implementing further measures of welfare retrenchment and introducing intrusive forms of control of workers’ activities, which may have eroded public-sector professionals’ discretionary autonomy (see Harris 1998; more recently, Busch and Henriksen 2018).
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The Great Recession (2008–2014) has somehow amplified these changes. Overall, the global economic crisis brought an upskilling of the workforce, resulting from a loss of low-skilled jobs in manufacturing and an increase in employment in advanced business services (Gallie 2013). Moreover, it accelerated the process of outsourcing high-skilled services. The number of professionals has, thus, reached its highest point (Bellini and Maestripieri 2018). On the other hand, neoliberal austerity further pressured welfare states, with direct and indirect effects on health and health equity (Viens 2019). The COVID-19 pandemic (2020 onwards), instead, was an unexpected and unprecedented event, which in the short term had a destabilizing effect on welfare systems, putting healthcare facilities and professionals under pressure and requiring prompt responses in terms of work organization and service delivery. Nevertheless, its sudden and violent impact caused an emotional reaction that forced state governments and supra-national institutions such as the European Union to change their policy approach and abandon austerity.
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Being Street-Level Professionals in a Changing World
Street-level bureaucracy theory studies public administration by focusing on the frontline of service delivery. Street-level bureaucrats (SLBs) are those frontline workers that interact with the “clients” of the public administration regularly and have discretion in granting access to public services (Lipsky 2010[1980]). Whether social workers, nurses, teachers, employment service caseworkers, or police officers, they are asked to translate standard regulations and procedures into personalized interventions. Albeit neglected by implementation literature, they make public policy at the frontline. The ability to act autonomously is crucial to managing the complexities of their caseloads. SLBs operate within a discretion space that SLBs filled with decisionmaking and work practices. This space is delimited, on the one hand, by the rules that grant SLBs alternative options for service delivery (Hupe 2013) and, on the other, by SLBs’ perceived discretion, namely, the degree of their influence on the delivery process (Thomann et al. 2018b). “Discretion-as-perceived” is also linked to the meanings attached to the policy for pursuing societal objectives or improving clients’ well-being (Tummers et al. 2012a). Thus, discretion has a top-down, hierarchical component (Hill and Hupe 2020). From an analytical point of view, the object of analysis of street-level bureaucracy theory is “discretion as used” by frontline workers (Hupe 2013). Discretion could be employed to apply rules or prioritize some groups over others, rationing services, and developing routines to cope with work pressures irrespectively of clients’ satisfaction or service efficacy (Evans and Harris 2004; Lipsky 2010[1980]). However, rules could be adjusted or broken to favor clients’ interests and expectations and ease SLBs’ job (Tummers et al. 2015). The literature assigns a pivotal role to the service encounter, where citizens meet the state, to explain SLBs’ behavior (Dubois 2010). The interplay with clients in
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single or repetitive interactions influences SLBs’ decisions (Davidovitz and Cohen 2021) and role interpretation (Zacka 2017). Frontline workers need to obtain clients’ compliance with procedural requirements. Collaboration is also crucial when the service is coproduced with clients (Larsen and Caswell 2022). Everyday work is characterized by heavy workloads and lack of resources, uncertainty (Raaphorst 2018), and vertical and horizontal pressures to deal with multiple sets of expectations stemming from regulations, policymakers, managers, clients, and peers (Thomann et al. 2018a). Van Berkel et al. (2017) identify four contexts in which the service encounter is embedded. The policy context focuses on the specific contents of policies and services that could collide with SLBs’ representation of the public mandate. The governance context regards service delivery models – i.e., the interorganizational relationship between public and private providers and public administration’s steering mechanisms. The organizational context underlines the influence of managers’ decisions regarding the distribution of roles and tasks on SLBs’ ability to deal with workloads. Organizations also provide SLBs with resources and constraints in ordinary as well as critical times. The occupational context relates to professional identity, skills, and competencies that affect frontline workers’ interpretations of the service encounter. Since Michael Lipsky published his seminal work (2010[1980]), public administration reforms have fundamentally changed the roles and scopes of street-level organizations. Managerialism made public service delivery more responsive to the economic goals of customer satisfaction and cost containment, while externalization widened service provision to private providers (Klenk and Pavolini 2015). Scholars, thus, have put attention to the impact of NPM and performance management on SLBs’ practices (Brodkin 2011), private providers’ specificities in delivering public services (Cohen et al. 2016), and conflicts between rules, professional norms, clients, and organizational priorities (Tummers et al. 2012b). Recent advancements in the field related to the effects of technological development on discretion spaces, such as a reduction in professional discretion and the decline of face-to-face interaction (de Boer and Raaphorst 2021). Another stream of research stresses the literature’s excessive focus on the Global North by widening the analysis to developing countries (Lotta et al. 2021). The influence of the contextual characteristics of neglected settings could inform the literature with new perspectives and theoretical concepts.
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The Impact of Neoliberalization on Professional Identity
Neoliberalism is an ambiguous and contested concept, which covers a broad semantic field, and whose value of meaning and usage has radically changed over time (Boas and Gans-More 2009). Its intellectual origins are in the thought of midtwentieth-century economists, such as Hayek, who played a decisive role in its evolution from an economic and political philosophy to a political project. From the 1970s to the 1990s, it completed its ascent to global hegemony as a new
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economic orthodoxy regulating public policy (Harvey 2005). The UK and the USA are where the neoliberal ideology was translated into sets of policies, which transformed the economy and pervaded society. Neoliberalization was triggered by the rising levels of debt in advanced countries, which called for cutting public spending and restructuring the administration and delivery of public services. As Webb (2006, p. 49) observed, “the neo-liberal programme [. . .] makes its entry on the welfare stage by initiating and extending a market rationality of individualism, competition and efficiency.” Likewise, the author added, it has “a decisive impact on social work” (p. 49). Neoliberalism found support in managerialism. To put it with Harlow et al. (2013, p. 536), “managerialism may be a means of making material the ideology or discourse of neoliberalism.” Indeed, it “assumes that resources are best allocated through the market; that the market allows more consumer choice; lowers program costs; and ensures higher quality, more productive, efficient, effective, and accountable services than government” (Lewiskin et al. 2021, p. 260). Also known as new managerialism or new public management, it introduces “business-like” methods and market mechanisms in public administration (see above all Hood 1991; Osborne and Gaebler 1992; Pollitt 1993). The diffusion of managerialism in the public sector implied marketization, which involved privatizing some services, increasing competition among public and private providers, and focusing on “customers” (Sawyer 2009; Shanks et al. 2015). Moreover, managerialism was sometimes associated with forms of scientific management (Harlow 2003; Webb 2001) and lean work organization (Baines 2004; Lewiskin et al. 2021), introducing the principle of “performativity” and performance measurement techniques. A large body of literature has documented the impact of managerialism and marketization on social work. Harris (1998, p. 851) wrote that, in the UK, “following the election of the first Thatcher Government in 1979, social work was caught up in the general break-up of the post-war consensus on the welfare state.” Social work, he said, “was considered to be deeply implicated” in the “failings of the post-war social democratic consensus” (p. 851). “[. . .] its delivery agencies were seen as inefficient, wasteful and unbusiness like with a lack of concern for efficiency and value for money” (p. 852). This literature emphasized how NPM has resulted in substantial changes in social work organization (see Harlow 2003; Harris 1998; Lawler 2000), including “a change in culture where concepts of quality, competition, value for money and choice become key in service delivery; the development of performance measures for social work organizations; greater authority delegated to managers for service delivery; a focus on key strategic organizational objectives” (Lawler 2007, p. 128). Several authors in different countries described the effects of such changes in terms of increased bureaucracy, routinized work, and controls (see Webb 2001). Among them, Lewiskin et al. (2021, p. 260) described human service agencies in the USA as operating “in an entrepreneurial context that increasingly rewards discipline, performance, and organizational capacity rather than mission, community roots, and professional judgment,” which “rarely includes ideals of equality, common good, and social justice.”
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Social work practice itself is deemed to have become “managerialist,” which implies spending more time on paperwork than face-to-face casework (see Baines et al. 2014; Harlow et al. 2013; Lewiskin et al. 2021; Webb 2006). Years ago, Parry and Parry (1979, p. 42) had spoken of a bureau-professionalism, described as “a blending of elements of professionalism and bureaucratic organization,” which implies “neither professionalism nor purely bureaucratic organization” (on this concept, see also Harris 1998), somehow anticipating Noordegraaf’s (2007) conceptualization of “hybrid” professionalism. Contrary to a common view of separate professional and managerial roles, some scholars remarked that social work managers are often recruited from the ranks of social workers and see themselves as social workers (Evans 2009, 2011; Shanks et al. 2015), which invokes the problem of identity. These changes have been considered “a threat to the identity of those sectors of society which have operated outside the mainstream of the commercial culture” (Moore 1998, p. 84). That said, scholars seem to agree that healthcare social work has been hurt the most. NPM principles contrast with the values and contradict the social representation of this profession (Lévesque et al. 2019; Lévesque and Negura 2021; Negura and Lévesque 2021). NPM reforms requested practitioners in this field “to reframe their professional role from a value-based setting (deemed inefficient) to standardized practices (mainly evidence-based), which are better suited to broad monitoring and institutional integration” (Lévesque and Negura 2021, p. 2). Furthermore, they entailed “profound ethical dilemmas for clinical social workers faced with increasing health inequities” (p. 2). What is being questioned is the very idea of social justice at the core of social workers’ identity in healthcare, threatened by changing workplace practices. In the words of Lévesque and colleagues, “social workers are greatly burdened by the impositions of the healthcare workplace, which fails to wholly respect their professional identity and to recognise their contribution” (Lévesque et al. 2019, p. 2260). Again, “the managerialism of the workplace leaves little place for social justice, community and compassion by branding social work itself as a form of business within an agency” (Lévesque and Negura 2021, p. 11). Similarly, as Brown et al. (2022, p. 782) noted in relation to the case of mental health, “social workers risk their social justice-based professional identities under the institutional and social climate of neoliberalism with its emphasis on fiscal constraint, the rationalization of all mental health practices, and when the workplace requires social work practitioners to adopt the knowledge and practices of other disciplines rather than their own.” These authors also argue that the misalignment of identity and practice is a source of professional distress. To quote Lévesque and Negura (2021, p. 12), “to alleviate the distress caused by this dissonance, clinical social workers are called upon to welcome a core transformation to their professional identity by re-objectifying and re-anchoring their representation of their practice in alignment with the NPM perspective guiding administrative priorities.” Professional identity is often seen as tied to the fortune of discretionary autonomy. To cite Sawyer (2009, p. 443), “most researchers argue that increased regulation, along with neo-liberal welfare reforms, has significantly diminished professional discretion and autonomy, greatly increased administrative monitoring
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and supervision, and reshaped professional identities around managerial rather than therapeutic skills, leading to high levels of stress and frustration, and the deskilling of professionals.” SLB research has made an important contribution to the understanding of these dynamics. Notably, Evans and Harris (2004) clarified some critical aspects concerning the significance of discretion in social work practice. Evans and Harris examined two contrasting perspectives on this point. On the one hand, the continuation literature argued that “practitioners retain some discretion and autonomy” since “managers may find it hard to control the content of their practice” and “workers will have evolved strategies for managing the dilemmas that are an integral part of their tasks” (authors’ quotation from Preston-Shoot 2001, p. 9). On the other hand, the curtailment literature postulated “the success of managerial control and worker compliance” (Evans and Harris 2004, p. 873). As the authors explained, “there are significant differences between these two perspectives, differences which focus on beliefs about managers’ desire for, and ability to secure control and workers’ ability to resist control and seek discretion” (p. 876). However, they concluded, both perspectives assumed discretion “as an all-or-nothing ‘good thing,’ as a phenomenon that either does or does not exist” (p. 892). Contrary to this view, Evans and Harris stressed “the need to recognize the gradations of power that exist in the relationship between managers and professional workers within public services,” and that, accordingly, discretion “operates along a gradient, allowing different degrees of professional freedom within a complex set of principles and rules” (p. 881). Partly consistent with this argument, Lewiskin et al. (2021, p. 260) noted that “few researchers have asked front-line workers who sit at the intersection of clients and agency policies about their experience with managerialism.” To fill this gap, they studied the impact of managerialism in addiction treatment in the USA, where the opioid crisis has intensified the need for services. While reporting the shared perception among frontline workers and managers of threats to working conditions, worker well-being, and service quality, they registered essential differences between the two groups. Managers especially were divided into two subgroups. They all had earlier experiences on the frontline, but some were moved by “empathy and patience enabling them to support front-line workers as they adjusted to the demands of managerialism.” In contrast, others “felt more aligned with the upper administration and more readily embraced managerialism and outside regulations” (p. 267). Based on a study on Australian mental health workers, then, Sawyer (2009, p. 455) claimed that the length of experience in the field and differential socialization processes explained the existence of different views. Those who entered the system before NPM reforms were “critical of the erosion of professional autonomy, the growing dominance of paperwork and procedures, and the ‘over focus’ on risk and monitoring.” Those recruited more recently, instead, appeared “to have internalised various technologies of risk management into their professional identities, and did not feel at odds with organisational goals that involved monitoring activities” (p. 456). Some authors have gone further to document the experiences of resistance to managerialism. Among them, Baines et al. (2014, p. 435) analyzed “ways that frontline workers, supervisors and managers have worked together, individually,
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collectively with other groups in the larger community, and with unions to challenge the hegemony of NPM.” Based on data collected in Australia, New Zealand, and Canada, their study suggested “that there are important roles for managers and supervisors in resisting managerialism imposed by funding bodies and that managers and front-line staff working together within and against NPM can challenge the hegemony of this near-monolithic system” (p. 435). Moreover, it revealed “a myriad of resistance/subversion practices at numerous levels within the self, the workplace and larger society” (p. 439). The analysis of such practices, then, allowed the authors to identify three strategies for resistance: “buffering the impact of managerialism by reconceptualising outcome measures to reflect aspects of community practice seen as pivotal and important to workers” (p. 444); “management, staff and unions joining together in legislative and policy change” (p. 445); “management and unions joining together in community coalitions to challenge underfunding and social inequities” (p. 446).
6
The Covid-19 Pandemic As a Game Changer?
The health crisis triggered by the COVID-19 pandemic has heavily impacted healthcare systems. Intensive therapy units experienced an increasing and overwhelming demand, especially in the first phase of the crisis. At the same time, outpatient centers and primary care reduced their activities to contain the spread of the virus and freer medical staff to be employed in emergency units. The pandemic has imposed changes in how healthcare services are delivered, not only to those directly affected by COVID-related issues. Healthcare social workers play a crucial role in assuring the social inclusion of the most marginalized groups by containing the consequences of protracted quarantine, such as people with physical disabilities or mental disorders, long-term care patients, and the elderly. They are at the frontline of the crisis, facing the consequences of government policies to contain the virus while servicing their patients and clients. Frontline workers had to deal with unprecedented questions: “How should they deliver services in a locked-down city? How could they integrate both online services and arrange for the delivery of tangible resources on a daily basis? How should they respond to the needs and concerns of the local residents amidst the chaos of a community lockdown?” (Du and Chan 2021, p. 301). Scholars have mainly focused on the psychological effects of the health crisis on healthcare social workers, particularly those related to organizational changes. Occupational burnout is common among those healthcare social workers who do not feel supported by their organization (Martínez-López et al. 2021). Cases of negative coping strategies (e.g., substance use, behavioral disengagement, and self-blame) are reported by Gillen et al. (2022) in contexts where supervisors are not supportive of social workers. Moreover, the introduction of remote work affected work practices noticeably. The measures to contain the spread of the virus “caused substantial disruption to social work practice as usual” (Ross et al. 2021, p. 12). Telehealth (both online and
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by phone) assured social distancing and patient care due to the use of telecommunication technologies (Monaghesh and Hajizadeh 2020; Morilla-Luchena et al. 2021). Medical staff could interact remotely with patients to collect information, make a diagnosis, give treatment, offer consultation, and emotionally support patients. Face-to-face interactions are considered an essential component of the social work profession in healthcare, especially during counseling, crisis intervention, and dismissal management (Judd and Sheffield 2010). The necessity to switch rapidly from direct interaction to remote work concern social workers due to a perceived lack of preparation and competencies (Schiff et al. 2021). However, remote work has contradictory effects on service delivery. Telehealth quickens service time by reducing travel time (Franceschini et al. 2021) and prevents social workers from contagion; at the same time, it increases job responsibilities due to the modifications to clinical protocols determined by social restrictions (Ross et al. 2021). Social workers are required to adapt work practices and relationships with patients to remote work specificities, thus acquiring new skills (Ben Shlomo and Levin-Keini 2021). Their professional identity could be a source of resilience by counteracting the sense of powerlessness before the health crisis (Currin-McCulloch et al. 2022). According to Ross et al. (2021, p. 16), “the social work identity appeared to provide both a sense of strength and an overwhelming need to help, even when resources to do so were not available.” On the other hand, remote work affects work-life balance by blurring the boundaries between work and family life (Ross et al. 2021). This influences social workers’ self-care strategies to cope with stress, exacerbating burnout (Miller and Reddin Cassar 2021). Indeed, healthcare social workers are, for the most part, women, and the difficulties in reconciling care and family responsibilities with their work increase the risk of psychological burnout (Schiff et al. 2021). The challenges posed by the pandemic require social workers to revisit and reconfigure their professional identity. The literature review reveals that few contributions focused on the impact of the pandemic on social workers’ identity. Among them, the study of Du and Chan (2021) on social workers in the Chinese cities of Wuhan and Hong Kong revealed that uncertainties and threats in dealing with the health crisis encouraged social workers to offer additional support to their clients voluntarily. Viewing this finding through the lens of SLB theory allows us to conclude that the unprecedented challenges increased frontline workers’ leeway in interpreting their tasks and responsibilities. According to Du and Chan, the pandemic also increased the significance of interprofessional collaboration. While healthcare social workers typically interact with practitioners from different professions, the health crisis strengthened the bonds with the medical staff, especially in the aftermath of the crisis. Mojica-Méndez et al. (2021, p. 12) stressed that healthcare professionals react to the health crisis by looking at the characteristics of the context in which they work: “there is also room for improvisation and decision making based in the behavior of colleagues and environment conditions.” A systematic analysis is still lacking regarding the effects of the health crisis driven by the pandemic on healthcare social workers. The literary review reveals that
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the main focus so far is on the consequences of the introduction of social containment measures and remote work in terms of professional distress, leading to emotional burnout. The pandemic altered healthcare social workers’ working conditions both in-person and remotely. Nevertheless, healthcare social workers proved flexible enough to adapt to a new work context, characterized by intensive use of remote work and close collaboration with different professionals (Du and Chan 2021).
7
Conclusion and Future Directions
This chapter has reviewed the literature that ties institutional change and professional identity in the specific case of healthcare social work as a professional field severely hit by critical change processes. The analysis has revealed a dominant discourse that links the problem of identity to neoliberalization and its main components, primarily the rise of managerialism, translated into the NPM policy approach. Most literature has pointed to the impact these processes have had on professional culture and work organization and the related consequences for social workers, forced to renegotiate their identity and reframe their role into the changing work practices within the constraints imposed by the healthcare workplace. A connection is identified between the loss of autonomy, the reshaping of identity, and distress. SLB literature, though, brought to light the ambiguous role of discretion, neither a good nor bad thing in principle, but something that varies with the power balance in the relationship between managers and professionals. Research has revealed a range of strategies enacted by frontline social workers to resist managerialism. Managers themselves appear as a relatively homogeneous group but with different views. Neoliberalization in its various forms has proven effective in intertwining with other macro-processes, such as the post-industrial transition, globalization, and digitalization. Then, considerable literature has acknowledged the impact of neoliberal austerity on welfare systems during the Great Recession. Instead, thus far, international research has failed to find a link between neoliberalization and the COVID-19 pandemic, with the latter phenomenon being treated as exogenous to the economic and political spheres. While research has flourished on the effects of the pandemic on service delivery, work organization, and working conditions in healthcare, very few contributions have focused on how managerialism has influenced the processes of adaptation of work practices to the emergency. Most empirical studies have pointed to the introduction of remote work and its consequences in terms of reconfiguration of work relationships, worsening work-life balance, and increasing professional distress, although few of them explicitly addressed the problem of identity. In effect, the review did not allow responding to the question of whether the pandemic has been a game changer or not. That said, it is clear that state governments have assumed a radically different policy approach compared to the previous global crisis, while it is far less evident that managerialism has lost ground in the workplace. Worth noting, in present-day scholarship, the term neoliberalism is assigned a “negative normative valence” (Boas and Gans-More 2009, p. 153). As such, “it is
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used frequently by those who are critical of free markets, but rarely by those who view marketization more positively” (p. 139). The authors in the reviewed literature are part of the first group of scholars, harshly critical of managerialism and NPM. This has necessarily caused some distortions. For example, few studies focus on social work managers to investigate how they have adapted to the changes that have followed NPM reforms and how these changes have affected their professional identity. These studies revealed that managers mostly have a social work background, that their identity is often in line with professionalism, and that they can counter the impact of managerialism (Shanks et al. 2015). There is more. Neoliberalism, as well as managerialism and NPM, have not spread uniformly. In fact, most reviewed contributions are from liberal capitalist countries, such as the UK, the USA, Canada, Australia, and New Zealand. Countries with diverse political heritage are underrepresented, except for Sweden. This could be due to a selection bias, as we referred to English-speaking literature to contribute to an international debate. Further research would be needed at the workplace level across countries representing different models of capitalism to assess comparatively the pervasiveness of the managerial ideology and the resilience of professional identities in healthcare. SLB theory may give a significant contribution to understanding how street-level professionals such as social workers interpret and apply rules in changing work environments, thus making public policy at the frontline – in other words, how they perform identity work to coproduce institutional change. To conclude, the changes described in this chapter have had substantial implications for global public health, which relate to the reduced capacity of national health systems to deal with global crises such as the COVID-19 pandemic. This latter unveiled the detrimental effects of managerialism, marketization, and retrenchment on health systems’ responsiveness and resilience. These processes brought about the subordination of the ideal of social justice to the principles of cost-effectiveness and affordability and the shift from a community-based approach to an entrepreneurial one in delivering public services. Besides, the growing role of private providers further pressured health systems since the private sector has limited assets to cope with the overarching consequences of global crises. On the other hand, the retrenchment of public funding made healthcare facilities in advanced countries dependent on international labor mobility. Indeed, foreign-educated caregivers, nurses, and physicians cover labor shortages in these countries. The pandemic outbreak exacerbated the effects of labor shortages by suddenly increasing the demand for health services while stopping mobility. As such, the pandemic has brought to light the fragile interdependence of health systems and labor markets across countries. In this sense, assessing the long-term effects of COVID-19 on labor supply in healthcare will be a major line of research in the following years, and the political choices that inform institutional action will be a critical factor to observe. As a matter of fact, choices that are taken at the national level – e.g., the decision to reverse the retrenchment process or not – affect the possibility of treating global health threats as they are, that is, global problems that need to be addressed globally. Seen from this angle, the case of healthcare social workers is tricky. They are community actors who act as gatekeepers in the relationship between professionals
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and patients. Thus, they play a crucial role in handling complex situations. SLB literature stresses that discretionary autonomy enables frontline workers to adapt to challenges and uncertainties. However, the above changes had ambiguous effects on social workers’ autonomy in this field, which challenged their very professional identity. Similarly, the pandemic had ambiguous effects on work practices. These developments further weakened social workers’ structural position in the healthcare workplace to the detriment of the community logic. Moreover, social workers are more embedded in (and dependent on) the institutional context than other healthcare professionals since their body of knowledge pertains to locally specific norms, rules, and procedures. These aspects reveal a potential contradiction between countrybased systems of professions, relying on state regulation and professional selfregulation, and global regulation processes, such as those involving labor-market adjustments to demand and supply gaps for health services and the international public health system set up to deal with global issues like pandemics. In brief, this implies bringing regulation back in and looking at the regulatory model as the variable that determines the direction of change. It also implies focusing on the interactions between regulation fields, levels, and actors.
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The Ethics of AI and Robotics in Public Health: An East Asian Perspective Billy Wheeler
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Existing Applications of AI in East Asia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 AI and Robotic Care: Some Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Disease Prevention and Wellness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 Lifelong and Elderly Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Ethical Issues of AI in Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Bias and Reliability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Dependency and Deskilling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Objectification and Deception . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Data Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Ethical Traditions in East Asia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Buddhist Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Confucian Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Daoist Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter explores the ethical challenges and issues that have arisen from the use of AI and robotics in public health within the context of East Asia. This is a region of the world that is often ahead in the adoption of new technologies yet its deeply held philosophical and religious values raise unique challenges that might not be fully appreciated in the West. In the goal for a truly global approach, these challenges ought to be understood and the divergent perspectives on them incorporated into the design of ethical policies for AI and robotics in public health. This chapter discusses novel ways technology is being used in East Asia to B. Wheeler (*) College of Arts and Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_35
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help solve public health problems and the ethical issues they are raising. The chapter concludes with a reflection on the ethics of AI and robotics from three major worldviews that have been deeply influential in shaping the ethical values of the region: Buddhism, Confucianism, and Daoism. Keywords
Artificial intelligence · Robotics · Smart health · Health technology · East Asia · Medical ethics
1
Introduction
This chapter explores the ethical challenges and issues that have arisen from the use of AI and robotics in public health within the context of the cultures of East Asia. This is a region of the world that is often ahead in the adoption of new technologies yet its deeply held philosophical and religious values raise unique challenges that might not be fully appreciated in the West. In the goal for a truly global approach to public healthcare, these challenges ought to be understood and the divergent perspectives on them incorporated into an ethical design and policy for AI and robotics in public health (WHO 2021). This is true not just for the countries of East Asia, but also for countries with sizable populations of East Asians living overseas, as well as parts of Southeast Asia that have historical and cultural ties to China – such as Vietnam, Singapore, and Malaysia. This chapter begins by describing AI and robotics care and some of the ways AI and robotics are currently being used in East Asia to solve existing challenges in public health, including disease prevention, diagnosis, treatment, and the care of the elderly and those with chronic health conditions. Then, ethical issues and problems that have arisen and what might arise in the future are outlined. Such problems include dependency and deskilling, concerns over safety, data privacy, and the deception and infantilization of elders. In the final section, insights and perspectives from three major worldviews of East Asia – Buddhism, Confucianism, and Daoism – are explored to better understand the standpoint they take on AI in public health. These worldviews have been chosen because they have been influential historically in shaping the cultural, religious, and ethical outlooks of East Asia. As will be shown, each one offers unique insights into the ethical use of AI and helps avoid the risk of cultural and religious bias in its design and use.
2
Existing Applications of AI in East Asia
2.1
AI and Robotic Care: Some Background
Artificial intelligence (AI) is the display of cognitive-like behavior (such as sensing, reasoning, and communicating) by machines rather than humans or animals. The term itself was coined by John McCarthy in 1956 who used it to refer to the “science
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and engineering of making intelligent machines” (Kaul et al. 2020, p. 807). The progress of AI has often tracked that of computing and our understanding of the human brain. Early forms of AI were “rules-based” that used simple logical operations on narrowly defined data types. Some of these early AIs found application in healthcare, such as MYACIN, which gave dosage recommendations for antibiotics based on a patient’s weight (Kaul et al. 2020). Today’s AI systems are more complex and utilize the so-called “deep learning” techniques that synthesize a range of different data types, such as those of natural language. It is this recent computing architecture, which takes its inspiration from the neural structures of the human brain that has afforded an explosion in the application of AI to healthcare in recent years (Siwicki 2020). The idea of a robot as a kind of “mechanical man” that can move and act by itself goes back much further in history. One notable example is the Jewish golem, a creature that can be made from inanimate substances such as dust or earth. The earliest robots were severely limited in the degree of freedom their movements can make as well as the kind of actions they could perform. In the 1950s and 1960s, robotic arms were used on car production lines, but it wasn’t until the 1980s that the first documented use of robots in healthcare applications could be found. In 1985 a robot named PUMA 560 was used in a neurosurgical biopsy and by all measures was a complete success (Matthews 2019). More powerful forms of computing combined with better precision engineering have made robots safer and more reliable for use in healthcare. These new robots can replace the simple tasks that are usually carried out by healthcare professionals and in some cases offer new avenues for therapies, such as talking robots and exoskeletons.
2.2
Disease Prevention and Wellness
Due to population growth and an increased strain on public health resources, there has been considerable investment in the application of AI for preventative health across East Asia. Data analyzed by algorithms to help disease prevention includes the presence or absence of disease agents, environmental factors, genetic predispositions, vital signs and other biomarkers, and individual lifestyle choices, among others. In the ongoing global struggle against the COVID-19 pandemic, AI has proven to be a useful and lifesaving tool. One well-known use is the quick identification of positive and close-contact cases for warning members of the public to isolate or get a test. However, this application is only useful once an outbreak has started and data on positive cases are available. In Japan, AI is being used to predict future outbreaks by analyzing environmental conditions that are likely to be conducive to the spread of the infection. Essam Rashed and Akimsa Hirata (2021) of the Nagoya Institute of Technology have developed a deep-learning model that draws on meteorological and mobility data to predict the spread of COVID-19. Their model utilizes a neural network architecture with long-short-term memory (LSTM) that analyzed data for six major regions: Tokyo, Aichi, Osaka, Hyogo, Kyoto, and Fukuoka. They found that this model was able to successfully predict COVID-19 spread in these regions more accurately than
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models that relied solely on positive cases. These results can be used to raise awareness about infection among groups most at risk. Climate and environmental factors have been discovered to be correlated with other disease outbreaks. Dengue fever is a mosquito-borne virus that has the potential to affect 3.9 billion people worldwide and is especially problematic in South-East Asia. One of the worst hit regions is Selangor, which accounts for 90% of all cases in Malaysia. Nurul Azam Mohd Salim and his team at the Universiti Teknologi MARA (UiTM) Shah Alam applied various machine learning models to data sets containing information about the number of positive cases and environmental variables such as humidity, rainfall, temperature, and wind speed. They found that their linear SVM (support vector machine) model delivered the most accurate results and supported the conclusion that high/low rainfall, high temperature, and high wind speed are positively correlated with outbreaks of dengue fever (Salim et al. 2021). In Vietnam, AI is being used to tackle a very different risk to public health: road safety. The Asia Injury Prevention (AIP) Foundation has paired up with the Vietnamese government in launching the Big Data “AI&Me” program. This initiative recruits high school students from three different provinces (Ho Chi Minh City, Gia Lai, and Yen Bai) to report dangerous road conditions to their local government by use of an app. Road safety is a pertinent public health issue in Vietnam and a leading cause of death among those under 29 (AIP 2022). The AI&Me program provides local governments with information on the roads which are most dangerous and helps the government make more effective and targeted interventions. Disease prevention is tackled not just through state intervention but also by encouraging individuals to take more responsibility for monitoring their health and through education to live a healthy lifestyle. The Korean electronics company Samsung has developed a free app “Samsung Health” for its smartwatches and smartphones that allows users to take recordings of their physical activity and calorie intake (PwC 2017). When the app is used on the smartwatch, it also allows users to take an electrocardiogram, providing evidence of potential atrial fibrillation. Other benefits of the app include its ability to reveal signs of hypertension and sleep apnea. Singapore’s Health Promotion Board has collaborated with the company FitBit as part of its “Smart Nation” initiative to provide free app trackers to all members of its population (Kwan 2019). The tracker monitors physical activity and encourages them to make healthier choices in the areas of physical exercise, sleep, nutrition, and emotional well-being.
2.3
Diagnosis
Once a patient displays symptoms of illness, AI is being used to help doctors and other healthcare workers give a diagnosis more quickly and accurately. In China, many rural hospitals lack specialists in eye health, yet with a population nearing 1.4 billion, the need for good quality eye-related health interventions is enormous. The
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Beijing-based company Airdoc recently received government approval to use their newly developed AI software in Chinese hospitals (Olcott 2022). The software uses image-scanning techniques to identify changes in the discoloration of the retina. These changes are correlated with a range of health conditions including high blood pressure and diabetes. The AI’s machine-learning model can also provide a more accurate diagnosis of myopia by scanning the shape and size of the patient’s lens. This has been shown to yield better treatment in procedures such as implantable Collamer lens surgery. In many parts of Southeast Asia, Tuberculosis (TB) continues to be a public health concern. Vietnam aims to have zero cases of TB by 2030 (VietnamNet 2020). Part of this effort includes developing AI that can screen X-ray images for early detection of the disease. Vingroup’s Big Data Institute has been trialing new AI software called VinDr-ChestXR that can detect signs of TB and other lung diseases. The AI was trained using 300,000 chest X-ray images from community hospitals across Vietnam and since then has proven to be an extremely fast and accurate tool. It was able to detect 28 common lung lesions and diseases in under 1 s and has a diagnostic accuracy rate of 90% (VinBigData 2020). In addition to helping to detect TB and other lung diseases, Vingroup’s Big Data Institute has also developed VinDr-Mammo, which uses similar techniques to identify lesions in mammograms indicative of breast cancer. With an average accuracy of 85% and a processing time of 5 s, this AI is paving the way for using BIRADS (Breast Imaging Reporting and Data System) classification in a large-scale breast screening program in Vietnam. At National Taiwan University, AI is being developed to help speed up the diagnosis of leukemia. In Taiwan, there are over 1000 deaths from leukemia every year with the number of positive cases rising between 2015 and 2018 (Aisyah 2021). Current manual diagnosis is labor intensive as it can take up to an hour to analyze a single bone marrow sample for signs of the disease. In addition, precision and accuracy can be severely affected by the examiner’s eyesight and personal skill. The newly developed AI was trained on 600,000 samples and can generate a bone marrow smear analysis in 5 min. In trials, the AI system had an accuracy rate of 70–90% compared to those of a trained doctor. The potential benefits mean that the AI system has already received regulatory approval from Taiwan’s Ministry of Health and Welfare for marketing as a medical device.
2.4
Treatment
Cancer is a leading cause of death globally and in 2020 was responsible for nearly 1 in 6 deaths (WHO 2022). Although there are now many treatment options available, the multidisciplinary nature of those treatments as well as the sheer volume of new research, makes it difficult for doctors to provide the most effective treatment recommendations for patients in a timely manner. To help alleviate this problem, IBM developed Watson for Oncology, a cognitive computing system that
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uses AI algorithms to look for the most effective treatment options. It does this by searching for patterns in thousands of electronic medical records of cancers of similar type, size, and location in the body, and cross-referencing with published oncology-related research. In 2017, IBM collaborated with Gachon University Gil Medical Center in Korea to offer Watson as an assistive tool for oncologists. In trials, one study found that the therapy recommendations for colon cancer between Watson and human physicians were in 48.9% concordance overall, with the percentage of cases found to be “acceptable” 65.8% (Lee et al. 2018). The low level of acceptable recommendations found in the Korean study might be a cause for concern. It has been a common complaint against IBM’s Watson for Oncology that it makes unsuitable treatment recommendations that could jeopardize patient safety (Hernandez and Greenwald 2018). However, focusing on the overall acceptability rate obscures differences that might reveal potential benefits to public health. The authors of the study found that the concordance rate with doctors that did not provide treatment as part of a multidisciplinary cancer care team (MDT) was lower (39.9%) compared to those that were (Lee et al. 2018). This suggests that Watson might be more useful in places where MDTs are not available or impractical such as low-income and hard-to-reach areas. In addition, Nathan Levitan, the Chief Medical Officer at IBM Watson Health Oncology and Genomics, explains that Watson is continually improved and that IBM maintains a proactive and responsive approach (Cavallo 2019). The safety of AI in healthcare settings forms a major ethical issue by itself. I will return to this topic in the next section of the chapter. AI is also helping surgeons achieve better outcomes for patients during an operation by increasing the accuracy of their movements. The most well-known example of this is the assistive robot DaVinci by Intuitive Surgical. In Vietnam, DaVinci has been used at Vinmec Times City International Hospital in Hanoi since 2018 to assist in the treatment of gynecological diseases, including endometrial, cervical cancers, and womb tumors (Vietnam News 2018). The system has many advantages. It gives the surgeon a 3D view of the surgical area that magnifies up to 10 what the human eye can see. The instruments are attached to a robotic hand that delivers a greater degree of motion, and its tremor filtration technology helps alleviate the effect of the human hand’s natural tremors (Intuitive 2020). The result is a more precise form of minimally invasive surgery that reduces the risk of complications, infections, and blood loss. In Singapore, AI is being paired with autonomous robots to help treat children with autism spectrum disorder. Children with this condition are known to suffer difficulties developing social and communication skills, especially “joint attention skills,” which is the ability to share attention between two or more persons. A study by (Carlson et al. 2018) found that children who engage with an animatronic robot named “CuDDler” made significant improvements in their joint attention skills. CuDDler is a soft non-humanoid robot that resembles a traditional teddy bear. It interacts with users through sound, tactile, and visual cues. The use of animatronic devices like this for autism therapy is useful for children who find interaction with
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other children traumatic and where sessions with a trained health professional may be difficult to come by.
2.5
Lifelong and Elderly Care
As the average life expectancy is increasing, more people need care for chronic diseases and those associated with old age such as dementia and loss of mobility. Around the world, this is placing a significant strain on public health resources. While for the elderly in many cases specialist centers of care and respite are available, there is still much stigma in East Asia associated with institutional care for the elderly, as traditionally, it was considered a moral duty for family members to take on this role (Canda 2013). Perhaps because of this, East Asia has been at the center of some of the most innovative uses of AI and robotics in chronic disease management and in care for the elderly. Many companies in Japan are exploring the use of humanoid robots to assist in lifelong care. Robots take on many roles. One robot named “ROBEAR,” developed by the RIKEN-SRK Collaboration Center for Human-Interactive Robot Research and the Sumitomo Riko Company, assists care workers by helping patients stand up and moving patients from beds to wheelchairs. The robot helps relieve the strain on nurses who may typically have to lift 40 patients a day, placing them at risk of developing lower back problems (Dredge 2015). Another Japanese-made robot “Pepper” is being used to help with the elderly emotional and mental health. A recent study (Sato et al. 2020) employed the use of Pepper in a Japanese care home for the rehabilitation of patients suffering from schizophrenia and dementia. They found that interaction with the robot can function as a conversation starter and guide basic physical exercise, activities that can assist in the management and therapy of these diseases. Mobility issues are not just a problem faced in the health of the elderly. For a multitude of reasons, patients can lose the functionality of their lower limbs. AI is now making possible exoskeletons that provide powered support to the hip and knee making it easier for patients to stand, walk, and climb stairs by themselves. Exoskeletons are also valuable for the rehabilitation of stroke victims during gait training via dorsiflexion and plantarflexion assistance. Most models of exoskeleton for assisted walking still require the patient to use an additional tool, such as crutches or a walking stick, to maintain balance. In China, a new exoskeleton design has been created by Ren et al. (2018) that allows patients to walk without the need for additional tools. The software controlling the exoskeleton utilizes an “online stepwidth adaptation” to retain balance during hip movement. In experiments, the team in China found that healthy subjects wearing the exoskeleton were able to maintain a walking speed of 0.8 m/s without the need for any additional tools. In addition to applications in medical treatment, powered exoskeletons are also being used in China to help firefighters cover greater ground and lift heavier objects (Bergan 2021).
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3
Ethical Issues of AI in Healthcare
3.1
Bias and Reliability
Many of the examples of AI examined in the previous section use machine learning to uncover causal relations between real-world phenomena. These causal relations are inferred from identifying patterns in data sets gathered from medical records or observations. If the data sets are partial and do not give an accurate reflection of reality, this can lead to bias in the predictions made. A recent study by Larrazabal et al. (2020) looked at AI that uses a database of X-ray images to provide diagnostic recommendations for thoracic diseases. They deliberately fed the algorithm data that was imbalanced along gender lines. When using data from mostly male patients (the training set) to make predictions about a female patient (the test case), the AI consistently gave less accurate diagnostic recommendations. The same is true when the gender is reversed. They concluded that this shows that AI can provide less accurate outcomes for members of underrepresented groups and that therefore diversity should be prioritized when designing datasets to be used for the training of diagnostic AIs. It is not just sample diversity that can lead to bias and poorer treatment for minority groups, however. When factors are considered by an AI that are themselves the outcome of implicit bias, lack of opportunity, or historical injustice, this too can be “coded” into the design of the algorithm. Take the much discussed example of United Health’s “Optum,” which correlated past spending on healthcare with the severity of an illness (Watson and Marsh 2022). Because Black patients traditionally spend less on healthcare than their white counterparts, this algorithm mistakenly grouped together Black patients in need of care with healthy white patients. This was supported by a study by Obermeyer et al. (2019) that found the algorithm underestimates the healthcare needs of Black patients by almost half. Despite this, United Health has claimed that the “health spending” factor is optional for the algorithm to work, and when this factor is excluded, racial inequalities are also minimized. This result has also been established in the study by Obermeyer et al. (2019). AI can pose risks to a patient’s health and safety in a more direct manner when it controls a robot coming into contact with their physical body. While many countries follow strict guidelines for the safe use of robots in the workplace, such as an industrial factory line, the use of robots in the medical sector is relatively new and not so well regulated. As an example, consider the use of exoskeletons for rehabilitation. A study by Bessler et al. (2020) found that out of 100 subjects trained to use a robotic gait trainer, 17 had an adverse reaction. These were categorized into three different groups: soft tissue related, musculoskeletal, and physiological. Soft-tissuerelated issues are caused by rubbing of the cuffs, pads, and straps used to connect the actuators to a patient’s body. After repetitive use, this rubbing can create skin reddening, irritation, and lesions. Musculoskeletal problems are a result of the actuators applying force to the limbs when there is a mismatch between the joints of the exoskeleton and the human body. This force can result in muscle pain, tibia fracture, and joint pain.
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Dependency and Deskilling
Prescription drug dependency is a well-known phenomenon. What was initially recommended to help treat a disease, or alleviate its symptoms, might become a problem if it is abused. While this problem is normally associated with drugs, it is possible that treatment involving AI and robotics might have a similarly detrimental effect. What is perhaps more worrying is that given the ubiquity of these technologies is likely to be widespread in the future, it could affect not just patients, but also the doctors and healthcare workers who use them. A good illustration of this is the increase in ransomware attacks on medical IT infrastructure. In 2020, a cyberattack on the University of Vermont Medical Center resulted in the loss of access to electronic medical records. Many planned surgeries had to be rescheduled or relocated (Weiner 2021). In 2021 alone, more than two-thirds of hospitals in the USA experienced a ransomware attack (Paul 2022). The digitalization of healthcare makes it vulnerable to other factors that can damage electronic equipment such as power shortages, radiation from solar events, and natural disasters like flooding and earthquakes. As climate change continues to increase the number and severity of extreme weather events, hospitals that depend on AI and robots will need to ensure that electronic equipment is protected to minimize the risks to patient safety. There are more subtle ways the introduction of AI and robots into healthcare can have negative effects. Avinash Deo (2021) has argued that although technological advancements in healthcare usually bring about positive outcomes for patients, each new addition generates a certain amount of deskilling for the medical practitioner. While the invention of the stethoscope allowed physicians to make more accurate assessments, it brought about the loss of the ability to analyze a patient by placing one’s ear directly to the patient’s chest. More recent examples include CT and MRI scanning technology, which has resulted in the radiologist losing the ability to interpret the results of a barium meal, barium enema, or myelogram. Deo sees no reason why the introduction of AI would not be any different. While in most cases the use of AI does not generate any new data, the ability to analyze and sort existing data, and provide diagnostic and treatment recommendations are important skills that might get lost if doctors become too dependent on AI. The worry is not that doctors will consciously give up these skills, but that their time and attention will be spent on other tasks, giving them less opportunity to practice and reinforce them. In a recent talk, Google Deepmind’s senior clinical scientist Alan Karthikesalingam defended the use of AI in healthcare settings from objections based on deskilling (Downey 2019). It cannot be denied that the introduction of more advanced technologies has, overall, had a net positive outcome on the health of the public. Regarding the worry about deskilling, Karthikesalingam claims that doctors and nurses will gain new skills by having to spend less time on more mundane tasks like paperwork. In fact, with this additional time, he claims doctors and nurses will be able to “upskill,” allowing them to spend more of their time at the peak of their professional abilities. Provided healthcare practitioners are trained
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properly to use AI and robotics alongside their medical training, doctors and nurses should be able to get the best of both worlds.
3.3
Objectification and Deception
One of the most talked about applications of AI and robots is to aid care for the elderly. As this technology improves, it raises the question: how much of the caring role traditionally filled by human nurses can be replaced by a robot, and is it ethical to do so? Robert Sparrow (2015) has argued that replacing human carers with robots could lead to a dystopian future where important aspects of welfare are denied to the elderly. The reason, according to him, is that robots fail to provide two essential social goods: “recognition,” which involves belonging to a social community, and “respect,” which consists of social relations where our own desires and ends are taken into equal consideration. According to Sparrow (2015, p. 4), robots cannot really “care” for humans: “machines lack both the interiority and the capacity to enter into the rich sets of affective relations (which are constituted by mutual vulnerability and the particular features of human embodiment) necessary to establish these ethical relations.” Because robots are not themselves human, Sparrow contends that it would be impossible for them to give recognition and respect. Yet, these social goods are important for well-being and can have an impact on physical and mental health. This ethical implication seems to be borne out in practice. In Japan, where care robots have been zealously promoted by manufacturers and purchased by both public and private care homes, James Wright (2018) observes that they have not always been well-received. In an anthropological study of a care home in Kanagawa Prefecture, Japan, Wright observed and interviewed patients and staff as they used a lifting robot called the “Hug.” Most of the responses were negative. Many care home patients complained of pain or discomfort. Interestingly, the staff’s main complaint was that it in some sense objectified the patients, removing the human element in their care: It was clear from speaking to staff, and from observing transfers taking place, that lifting constituted an integral part of the intimate care delivered by carers. Transfer provided close bodily contact, as well as being part of a routine of talking, joking, and performing everyday sociality with residents. In fact, caring with one’s own hands, human to human (ningen tai ningen; 人間対人間), was identified by care staff as perhaps the single most important characteristic of good care, expressed as respecting the elders (daisenpai 大先輩) (Wright 2018, p. 35).
A slightly different complaint about robots in care settings, which also relates to issues of respect and recognition, is that of deception. Consider Paro the robot seal designed and created by AIST. This cute furry robot resembles a baby harp seal and has been used in the therapy of the elderly with dementia. Patients can interact with Paro by stroking it and it has been designed to respond to tactile sensations and sound. Studies have found that patients who interact with Paro have reduced symptoms of anxiety and depression (Roger et al. 2012) and that it increases social
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interaction with other residents in care homes (Wada and Shibata 2007). These are clearly positive outcomes, and it has been claimed by the manufacturer that the use of Paro can reduce the need for psychotropic drugs. Sparrow (2002) objects to the use of pet robots for the elderly on the grounds that it is ultimately misleading. Although he acknowledges there can be certain benefits, he claims that “these are predicated on mistaking, at a conscious or unconscious level, the robot for a real animal” (2002, p. 305). The problem appears that the pleasure the elderly derive from their interaction amounts to a false sense of recognition. The patient mistakenly believes that the robot pet is responding emotionally to their actions of affection when in reality, they are simply following a mechanical procedure. However, not everyone believes this is ethically problematic. Sharkey and Wood (2014) argue that people enjoy anthropomorphizing technology and that people can choose to act as if something were real knowing full well that it is not alive. What is more, the tendency to anthropomorphize nonliving things is a basic human trait and people frequently treat inanimate objects as being alive, conscious, or intentional, with little long-term risk to their health.
3.4
Data Privacy
It is important patients trust their doctors and other medical staff to keep information about their symptoms, diagnoses, and any treatment they are having (including medication) confidential. Around the world, there is still a lot of stigma surrounding a number of illnesses, particularly sexually transmitted diseases and mental health conditions. People fear that if their family or employer knows about these conditions, they will face discrimination such as loss of job opportunities. If patients do not trust doctors to keep this information private, then it could have negative implications for their health and that of the public at large. When patients are unwilling to share information with doctors about their conditions, they are less likely to receive the correct diagnosis and treatment. Some have questioned whether the introduction of AI in healthcare risks compromising patient-doctor confidentiality. Machine-learning algorithms need to be trained using large data sets that often include patient medical records. A report by Lexalytics (2022) shows that although many current AIs in healthcare do not break the law regarding patient confidentiality, they do operate in a gray zone where information about patients can be stored for long periods of time outside of medical institutions and in some cases sold on to third parties. Examples include Facebook, which in 2017 collected data from users’ posts to predict and prevent suicide. Another example includes the genetic testing company 23andMe, which collects data about individuals’ DNA, ancestry, and genetic traits. Lexanalytics reports that 23andMe went on to sell this data to several biotechnology and pharma companies for medical research. The developers of these apps and other publicly available medical AIs are working within the confines of the law. But ethical questions remain. For a start, existing legislation on patient confidentiality does not easily apply to some of these
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applications as they legally do not count as a healthcare service. As these technologies become more pervasive in healthcare, existing laws and regulations will need to be updated to take into consideration the growing risks to patients. And although the use of these AIs requires individuals to give their consent to the data they provide being stored and used by third companies, doubts can be raised about whether individuals really have the knowledge and understanding to make an informed decision. Unauthorized and illegal use of patient information is also a serious concern, and the risks are higher when this information is stored in an electronic format. Hackers can pose a risk to doctors and patients when medical records are accessed illegally and held for ransom. This not only poses a risk to the patient’s treatment but also to their confidentiality. Keshta and Odeh (2021) provide an overview of the ways different medical institutions are safeguarding patient information held on electronic medical records. They arrange the security measures that are currently being adopted into three different themes. The first theme, administrative safeguard, involves having a competent system in the workplace and includes components such as having a designated security officer, performing various audits of medical records, and having a contingency plan in the event of a security breach. The second theme, physical safeguarding, includes physical infrastructure and hardware as well as assigned roles. The final theme, technical safeguarding, mostly concerns software used to restrict access to information. In their study, Keshta and Odeh found that the most used technological safeguards were firewalls, encryption, authentication verification, and antivirus software. Some medical institutions also used cloud computing, but this implementation is often costly (2021, 180).
4
Ethical Traditions in East Asia
4.1
Buddhist Ethics
Buddhism is the predominant religion in the countries of East Asia. According to the most recent data sourced by the World Population Review (2022), the percentage of the population that identifies as practicing Buddhist is: China (18.3%), Japan (33.2%), South Korea (21.9%), Mongolia (54.4%), Singapore (32.2%), Hong Kong (13.3%), Taiwan (21.2%), and Vietnam (16.2%). In these regions, Buddhism continues to have a significant influence on the moral, philosophical, and spiritual outlook of the population. Even among those who do not self-identify as Buddhist, its connection to a country’s history, culture, and national identity runs deep. For many, it is Buddhist teachings and philosophical ideas they turn to when thinking about ethical issues. Buddhism was founded by the historical figure Siddhartha Gautama (sixth to fifth century BCE). In his early life, Siddhartha is believed by Buddhists to have achieved “enlightenment,” a state of spiritual awakening that brings about the end of suffering and rebirth. After this experience, he became known as “the Buddha” and spent the rest of his life teaching. A core teaching of the Buddha is “dependent origination”
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(pratitya sumedhpada), which states that, despite appearance, all things are connected and nothing, including ourselves, exists as independent entities (Williams 2000, pp. 62–72). The path to realizing this truth requires mental and ethical practice. Lay followers of Buddhism are encouraged to follow the “five precepts” (pancasilani): (i) (ii) (iii) (iv) (v)
I undertake the precept to refrain from harming living creatures. I undertake the precept to refrain from taking what has not been given. I undertake the precept to refrain from sexual immorality. I undertake the precept to refrain from speaking falsely. I undertake the precept to refrain from taking intoxicants (Keown 2005, p. 9).
By taking on this path, Buddhists hope to end attachment and gain positive karma leading to a good rebirth. Mahayana Buddhism, which is the predominant form of Buddhism practiced in East Asia, develops Buddhist ethics further by promoting the ideal of the Bodhisattva – a being, not yet enlightened, but who has perfected all virtue (Harvey 2000). This leads to a slightly different emphasis that has traditionally meant downplaying individual salvation in pursuit of practices that cultivate wisdom and compassion. Buddhism has long emphasized the importance of good health and physical wellbeing. Before he attained enlightenment, the Buddha undertook various forms of ascetic practice that pushed the limits of his physical health. According to tradition, he limited his daily food intake to just one grain of rice, which left him severely weak and malnourished. Realizing that this would only bring about death, he took a middle way (madhyamāpratipada) between the extremes of pleasure and pain that followers of Buddhism continue to apply to their lives. Buddhists are encouraged to be mindful of their physical body, to nourish it with proper food and exercise, and to avoid intoxicating substances or practices that might harm it. In 2019, a conference was held by the UN to celebrate Vesak, or the Buddha’s birthday. One of the themes was Buddhism and the Fourth Industrial Revolution. The contributors were overall in favor of the use of AI in both the prevention and treatment of ill health. However, despite this a few concerns were raised. In his contribution, Waruni Tennakoon (2019) warns that new health technologies risked “concealing” the dukkha that comes in the form of old age, sickness, and death. He argues that the use of new technologies in healthcare had the potential to “sugarcoat” reality, making it more difficult for individuals to both experience and accept the suffering that is essential for starting the path to spiritual salvation. He proposes that the application of AI in healthcare be done in a “human-friendly” way that emphasizes loving-kindness, mindfulness, and spiritual understanding just as much as it does the detection and treatment of diseases. One issue with AI in healthcare is that it potentially infringes on an individual’s right to privacy through the gathering and sharing of medical data. In the West, an individual’s right to privacy is often justified by notions of autonomy and selfownership. However, these ideas do not always have the same priority in Eastern philosophy. In Buddhism, the existence of the “self” as anything other than a social
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or psychological construction is believed to be illusory (anattā), and attachment to it is a notable cause of suffering (Williams 2000). Dependent origination teaches Buddhists that all entities are interconnected and cannot exist separately from one another. The practical upshot is that Buddhist societies tend to place greater emphasis on collective well-being and the interconnected nature of personhood over individuality and privacy. One could therefore see an argument being made for the sharing of medical data if it had positive health outcomes for society as a whole. Despite this, Soraj Hongladarom (2020) does not believe that Buddhism should condone a radical laissez-faire attitude toward the sharing of medical data. He argues that Buddhists can offer a pragmatic defense of data privacy in the sense that although privacy might not be a primary virtue in Buddhism, respecting one’s privacy can provide benefits such as freedom from interference that could help an individual on their path to enlightenment (2020, p. 172). Hongladoram (2020) also believes that Buddhism itself can help guide the design of the AI that is better suited for this kind of privacy by developing what he calls “enlightened algorithms.” According to Hongladoram (2020, p. 166), “what an enlightened algorithm is supposed to do is to perform algorithmic action in such a way that it demonstrates ethical perfection...more specifically, this means that the algorithm exhibits both the desire to alleviate suffering and the understanding that all things are interconnected.” Talk of AIs and machines desiring to end suffering and understanding complex philosophical ideas like dependent origination may seem far-fetched, and Hongladoram admits this might be a misnomer for many of the machines that are currently in use. However, Buddhism, perhaps unlike many other philosophies and religions, is quite at home allowing the possibility that machines can have genuine mental states and even, in some sense, achieve a form of enlightenment. The famous Japanese roboticist Masahiro Mori (1981, p. 13) (who coined the phrase “the uncanny valley”) concluded that “robots have the Buddha-nature within them – that is, the potential for attaining Buddhahood” after spending many years trying to create anthropomorphic robots based on his study of human nature. For him, the possibility that robots can achieve enlightenment emerges naturally from the Mahayana interpretation of dependent origination as a form of “non-duality.” This kind of thinking has significant ethical implications for the use of AI and robots in healthcare settings that are only now just emerging. For example, if robots are capable of genuine mental states and can suffer from dukkha like all other living things, then it implies they too can become enlightened. This potentially alleviates some of the concerns hedged against robots in elderly care which, from the viewpoint of many Western philosophers, cannot provide adequate care for the elderly because they cannot empathize with their position.
4.2
Confucian Ethics
Although the doctrine of teachings that is today calleds “Confucianism“is named after the historical figure Confucius (551–479 BCE), many of its core ideas and values go back much further in Chinese history. In fact, Confucius was a conservative and saw
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himself only as a transmitter of knowledge that he believed had been largely forgotten. That knowledge included what it is to be an exemplary person ( junzi 君子) and involves the development of the cardinal virtues of benevolence, righteousness, wisdom, propriety, and trustworthiness, through proper conduct (li 禮). In the vernacular of Western approaches to ethics, Confucianism might, therefore, be called a version of “virtue ethics”; however, the virtues for Confucians are essentially social in nature. According to the preeminent Confucian scholar Roger Ames (2011), Confucianism is a philosophy of human becomings rather than human beings: one is not born a person but evolves into it by fulfilling one’s social roles in an excellent manner. Attending to the physical health of ourselves and others forms part of what it means to be an exemplary person. In addition to the five cardinal virtues listed above, one further important virtue for Confucians is “filial piety” (xiao 孝). It is here, perhaps more so than anywhere else, does the issue of health and well-being enter ordinary considerations for Confucians. According to the standard account, Confucius says that filial piety requires obeying your parents when you are young, caring for them when they are old, and honoring them when they are deceased. Traditionally in East Asian countries, this has meant that care for the elderly is a duty of their family members. But the ethic of filial piety does not just affect the health of the elderly – children too are expected to look after their own bodies as a way of honoring and respecting their parents. In a recent talk given to the Berggruen Institute, Roger Ames (2020) offers a Confucian defense of AI and robotics in a range of sectors. He argues that Confucian cosmology (which is rooted in the ancient Yin-Yang philosophy), does not see mankind as fundamentally distinct from the natural world. He gives as an example the “increasing integration of companion robots to homes for the elderly, an introduction which can create a happier, more fulfilled existence in end-of-life care” as a way for the younger generation to realize filial piety. Caution should be advised here, however, as not all Confucian scholars are likely to be so accepting. Confucians are only beginning to consider the implications of technology in healthcare, yet an analogous, but relevant example, comes from the debate regarding institutional versus family eldercare. On this matter, Ruiping Fan (2007) objects to institutional care replacing family care in most instances as a dereliction of duty. One could imagine a similar argument is used in the case of care robots. A consideration in favor of Fan’s stance is that Confucians must act in a way that is righteous (yi 義). There is a danger with AI-assisted care that family members no longer have any emotional or moral attachment to the needs of the elderly, and consequently, stop developing virtuous character. Kathryn Muyskens (2020) considers whether Confucianism can help the eldercare crisis in Singapore. She claims that there is no single answer from Confucianism that applies to every situation. Family dynamics are complex, and the nature of many diseases often means that it is impractical to expect family members to attend to elderly healthcare needs. While she acknowledges that in some cases Confucian values may leave unjust gaps in healthcare provision, there is no reason why Confucianism cannot support the use of institutional healthcare
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when the situation calls for it. One is reminded of the story of Dong Yong from the Twenty Four Paragons of Filial Piety (Ershisi Xiao 二十四孝) – an important instructional text in Confucianism – where Dong Yong uses technological aids to help maintain his filial duty toward his father’s care: Dong Yong found work as a farm laborer, and earned barely enough to keep his father in medicine. The old man was an invalid, so Dong Yong would carry him to a cart and tenderly wheel the elder to the shade of a tall tree beside the field where he was working. In this way he was able to keep his job and also nurse his father at the same time. (Rice University 2022)
Pak-Hang Wong (2021) has argued that Confucianism may even help us better understand the ethics of AI and the issue of consent. Confucianism shares with Buddhism the fact that privacy and self-ownership are not vital or fundamental virtues. However, like Buddhism, Pak-Hong Wang believes it is the Confucian belief in the interconnected nature of mankind that helps justify the sharing of medical data. More specifically, he appeals to ideas developed by the Neo-Confucian philosopher Zhang Zai (1020–1077) who considers mankind to be “one body” – so that if the health of one part is bad, then this is an affliction everybody shares. For Zhang Zai “public health” is understood literally. Wang reflects on the fact that whenever a person inputs data into an AI system, this can result in outcomes that affect everybody. For example, suppose a patient has symptoms x, y, and z, but does not go to the hospital to get them examined. It later turns out that these symptoms are the result of a rare form of cancer. If that patient had input that information into an AI-assisted diagnostic device or seen a human physician who created a record, valuable data has been lost that could be used to better diagnose cancer in the future and potentially save lives. As Wang puts it: “individuals qua users of AI systems ought to be mindful of the impacts of their decisions and actions can have on other users (and non-users), and the users’ failure to do so will be seen as a moral failing and a form of self-harm and self-degradation” (2021, p. 90). From a Confucian point of view, it would seem there is a moral incentive for patients to share such data. This does not imply that Confucians should be willing to accept data taken without their consent: instead, it requires them to have a good understanding of where that data will be used. In practice, this might be difficult if the data is sold to third parties for undisclosed research purposes.
4.3
Daoist Ethics
Daoism has its origins in the semi-legendary figure of Laozi (sixth century BCE). In the classical Chinese period, it was developed further by Zhuangzi (369–286 BCE) so that what is called “classical Daoism” can be thought of as a combination of these two figures. The key works produced by Laozi and Zhuangzi are deeply philosophical and cover issues related to metaphysics, epistemology, and ethics. The central idea in Daoism, and from where it gets its name, is the “Dao” (道). A difficult concept to translate into English, it is usually rendered as “the Way” or “Nature.” The
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Dao is the source of all that exists and how it behaves. According to the classical Daoists, human suffering is caused by living a life that is not in harmony with the Dao (Coutinho 2014). The human mind tends to project onto the world artificial distinctions that become the object of our attention. To overcome this suffering, we ought instead to live a life that is natural (ziran 自然) and in tune with the Dao. When individuals do this, they strengthen their natural powers (de 德) and can achieve their full potential as human beings. Given the emphasis on doing what is natural and avoiding what is artificial, it might be thought that Daoism is hostile toward technology and its use in supporting health. There are certainly passages that speak to this. For example, Laozi says “with the simplicity of true nature, there shall be no desire; without desire, one’s original nature will be at peace” (2021, ch. 37). Similar sentiments can be found in Zhuangzi when he claims that the happy person is “spontaneous and does not add anything to the process of life” as “the Way gives us the guise, and Heaven gives us the shape” (Graham 2001, p. 82). A particularly informative story comes from the Zhuangzi when a gardener is told about a new way to collect water that requires less energy and effort: The gardener raised his head and looked at Zigong. “How does it work?” “It’s a contraption made by shaping a piece of wood. The back end is heavy and the front end light and it raises the water as though it were pouring it out, so fast that it seems to boil right over! It’s called a well sweep.” The gardener flushed with anger and then said with a laugh, “I’ve heard my teacher say, where there are machines, there are bound to be machine worries; where there are machine worries, there are bound to be machine hearts. With a machine heart in your breast, you’ve spoiled what was pure and simple, and without the pure and simple, the life of the spirit knows no rest. Where the life of the spirit knows no rest, the Way will cease to buoy you up.” (Watson 2013, p. 91)
The implication seems to be that technological aids distance oneself from the Dao and in the process weaken our bodies, minds, and natural capacities. Despite this, Daoism developed over the centuries that followed to incorporate a wide variety of methods designed to improve health with the ultimate goal of achieving immortality. These practices, which developed alongside traditional Chinese medicine, can be separated into two kinds: (i) “external alchemy” (waidan 外丹) that combines ancient Chinese beliefs about Yin-Yang and the Five Elements to create medicinal elixirs made of iron and other elements, and (ii) “internal alchemy” (neidan 內丹) that focuses more on activities cultivating mind, body, and spirit in accordance with cosmological principles (Weng et al. 2019). After the Tang dynasty, neidan became the predominant form and would later influence Daoist religious rituals and ceremonies. Today Daoism continues to influence people of East Asia and is usually combined with elements of Buddhism, Confucianism, and local beliefs. Common signs of the continued practice of Daoism include the burning of joss paper, offerings to gods, dragon dances, feng shui, and fortune-telling (Schipper 1993). Drawing mostly from classical Daoism, Barry Allen (2010) does not believe that Daoists should reject all forms of technology. According to him “not all technology is the same. Some may be coercive and unbalanced, some more generous and sage-
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like” (2010, p. 154). He reasons that the gardener in Zhuangzi’s story rejects the well-sweep because it is likely to cause harm due to its “unnatural” or “unsagely” design. Instead, Allen recommends that Daoists use technologies that are “wuwei effective.” These are technologies that take their inspiration from nature and work with the Dao rather than against it. Based on Allen’s interpretation, one could argue that AI and robotics are not by themselves unsuitable for supporting public health but should only be used when they do not compromise an individual’s innate or natural abilities. For example, exoskeletons might be a suitable therapy for some individuals who have lost access to their lower limbs. However, for others, using exoskeletons might lead them to become overly reliant, leading to the atrophy of healthy muscle. Daoism recommends a course of action that supports AI and robotics but only when our natural abilities are not risked in the process. Swapping a natural ability for an artificial one is never ethically acceptable for Daoists. What about the use of social robots to assist with help for the elderly? Once again, Daoists would argue that the use of human carers rather than robotic ones is better – as one is depending on natural sources rather than artificial ones. However, Weng et al. (2019) argue that from the perspective of modern Daoism, where practitioners frequently do try to manipulate nature for health benefits using charms, offerings, and prayers, it is not inconsistent to use robots for this purpose. Like Allen, Weng et al. believe that design is key to determining whether the robot is ethical from the point of view of Daoism. A robot assistant, they claim, would be used incorrectly if it became a means to simply further the desires of the patient in material gratification. Instead, it should assist in the transcendent life of Daoists and “prevent people from reaching extremes by virtue of their own specific interests or preferred values” (Weng et al. 2019, p. 6). The robot should remain at a level of distance from the user and play only a limited role in satisfying their needs and desires.
5
Conclusion and Future Directions
Stephen Hawking once said that “our future is a race between the growing power of technology and the wisdom with which we use it” (Walker 2015). This provides a good way to summarize the situation in East Asia with regard to the use of AI and robotics in public health. This region of the world is home to some of the most exciting and innovative applications of these new technologies. However, like all technologies, AI and robotics raise issues and concerns that need to be addressed if they are to be used in an ethical and responsible way. This chapter outlined some of the ways East Asia’s own indigenous philosophical and religious traditions, such as Buddhism, Confucianism, and Daoism inform those values, and how they can be brought to bear on the ethical use of AI and robotics in public health. The need for an informed ethical discussion will only become more urgent in the future as research in AI and robotics for public health becomes more advanced. Plans are underway to combine AI with the so-called “internet of things” to provide around-the-clock monitoring of health markers for better disease prediction (XSOLIS 2021). This raises the stakes for those concerned about privacy as ever-
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larger amounts of personal information will be collected and shared through complex connected systems. Robots too are being developed to provide greater social utility such as by replacing doctors and nurses in remote areas and providing “talking treatment” to help with some mental ailments (Intel 2022). The realm of nanorobotics offers the opportunity for a whole new area of medicine where small machines are unleashed into the human body that can transport medicine and perform “micro-surgeries,” such as destroying cancerous cells (Agarwal 2021). With these new technologies there are new benefits, but with them come new risks. The future ethics of AI and robotics in public health must keep pace with this fast-moving field, and in East Asia, there is still much wisdom that can help guide a responsible and ethical advance.
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The Ethics of Vaccines During COVID-19: A Global Public Health Approach Through Utilitarianism Ranya Kaddour, Alex Workman, and Pranee Liamputtong
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Global Issues Surrounding COVID-19 and Vaccines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Overview of COVID-19 in Australia: March 2020 to October 2021 . . . . . . . . . . . . . . . . 2.3 Government and Public Influences on the Vaccine Rollout . . . . . . . . . . . . . . . . . . . . . . . . . . 3 COVID-19 as an Ethical Dilemma: Mandatory Vaccinations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Overview of the Ethical Theories . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Universal Ethical Egoism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Utilitarianism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Divine Command Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Universal Ethical Egoism, Vaccine Hesitancy, Literacy, and Misinformation . . . . . . . . . . . . . 6 Divine Command Theory, Vaccine Hesitancy, Literacy, and Misinformation . . . . . . . . . . . . . 7 Utilitarianism, Vaccine Hesitancy, Literacy, and Misinformation . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Utilitarianism is an ethical theory that advocates for the greatest good concerning the greatest number of people. It is broken down into two branches: Act Utilitarianism and Rule Utilitarianism. Act Utilitarianism proposes that people should R. Kaddour (*) School of Social Science, Western Sydney University, Sydney, NSW, Australia e-mail: [email protected] A. Workman School of Health Science, Western Sydney University, Sydney, NSW, Australia e-mail: [email protected] P. Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] © Crown 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_53
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always act in ways that will achieve the greatest good or happiness for the majority involved. Rule Utilitarianism follows the same principle but proposes that people should follow the established rules, as prescribed by authorities, to achieve greater outcomes. While these philosophical frameworks are not often discussed in the context of global public health, they still influence and provide a rationale as to why people should be aware of health issues that transcend nationstate borders. Utilizing COVID-19 as a case study, this chapter unpacks a Utilitarian perspective in relation to vaccine access, rationales for vaccination, and the distribution of vaccines within Australia, to develop a cohesive framework for vaccine rollouts in developing nations. The further commentary reflects the promotion of vaccines as acting in one’s best self-interest and the abuses of religiosity, which both contribute to vaccine hesitancy and misinformation on COVID-19. These occur in resistance to a Utilitarian approach to addressing pandemics as a global health issue. The authors of this chapter posit that when addressing COVID-19, a Rule Utilitarianism approach is needed to overcome misinformation and vaccine hesitancy, with improvements to health literacy, when creating a uniform approach to global public health issues. Keywords
COVID-19 · Utilitarianism · Divine Command Theory · Universal Ethical Egoism · Health literacy · Health misinformation
1
Introduction
More than five million people worldwide have died from the coronavirus or COVID19 pandemic to date (World Health Organization (WHO) 2021). The full impacts of the pandemic remain unknown, both on individuals and populations. Overarching fears of contagion and the lack of a cure mean that individuals have had to continually adapt to uncertainties in their daily lives. Even with the development of vaccinations, the COVID-19 pandemic has raised various ethical concerns worldwide, including penalties applied to the unvaccinated; the development of vaccinations pertaining to associated ingredients, side effects, and timeframe of development; the distribution of vaccinations; and even provided information surrounding the virus itself. Social media, news outlets, governments, and the medical community have exacerbated these concerns to varying degrees. As such, the global public, governments, and medical communities have been at odds with one another over the ethicality of vaccine rollouts, oftentimes linked to individual and collective human rights. Ethical theories guide individuals and their thought-making processes, being utilized to determine how one should or should not act in any given situation. A long-time debate is whether individuals’ expressing their rights are acting within their own self-interest or acting in consideration for others (see Kraavijeveld 2020; Savulescu 2021). In recent times, many individuals will argue that if enforced rules
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or recommendations go against their internal moral or ethical framework, then their basic rights of autonomy, agency, and self-determination are being abused (Kraavijeveld 2020), particularly by governments. This premise is mostly adhered to by those who are aware of but do not fully comprehend what their rights entail (Workman et al. 2021). There is also a difficult balance to be achieved when upholding personal human rights without expending the rights of others. Many people claim that their human rights are being abused, without consideration that individuals make sacrifices as part of civil society to ensure the rights of others are also equally upheld. Being vaccinated protects ourselves and protects other people; therefore, ensuring someone else’s rights is also protected in this process. People who choose not to vaccinate are imposing their rights and choices on others as well. While these rationales are paradoxical when considering that the pandemic has numerous global public health outcomes, the ethical action and ruling is to be vaccinated. This debate has sparked public fury with the recent COVID-19 pandemic, with many individuals citing that obtaining or being forced to get a vaccine goes against their human rights or even their right to choose. The public health benefits, as current evidence demonstrates, outweigh the minor infringements on someone’s rights or wants (Giubilini et al. 2018; Savulescu 2021). When vaccine rates are higher, the less likely people will experience adverse effects of the disease, such as death, loss of taste and/or smell, and organ damage. This chapter unpacks the ethical debates surrounding why people may or may not choose to vaccinate themselves against COVID-19, and their abuses and rationales against vaccinating.
2
Background
2.1
Global Issues Surrounding COVID-19 and Vaccines
It is undeniable that COVID-19 has impacted vulnerable countries and individuals disproportionately. This impact has further emphasized social inequalities related to health, socioeconomic status, race, age, as well as gender and sex. As explained by Oehler and Vega (2021) and Xafis et al. (2020), the pandemic has demonstrated disparaging differences between each country’s resources, health care, and information systems used to combat the pandemic. With much vaccine production conducted in wealthier countries, vulnerable countries and individuals will essentially miss out. As a result, there are reported dwindling preventive behaviors worldwide, such as social distancing, hygiene practices, and mask-wearing (WHO 2021). According to Xafis et al. (2020), such declines are interconnected with pre-existing social, political, and economic inequalities, each of which affects the quality of life. However, countries such as Indonesia (ABC 2021) and Singapore (Ermont 2020) are pushing for mandatory vaccination through fines, discontinued provision of welfare, and charging for hospital care and treatment related to unvaccinated coronavirus visits. Yet, developed nations, such as the United States (USA) and the United Kingdom (UK), have experienced the most deaths caused by a coronavirus,
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with Russia, Brazil, and Mexico following close behind (WHO 2022). In comparison, Australia has had one of the swiftest responses to the pandemic, mitigating death tolls from reaching a substantial high, following New Zealand, Vietnam, Taiwan, Thailand, Cyprus, Rwanda, and Iceland in early 2021 (WHO 2022). It has also had the slowest vaccine rollout among developed countries, from mid-2021. From Australia’s response to COVID-19, we take ethical lessons on how to respond and not respond to a global pandemic.
2.2
Overview of COVID-19 in Australia: March 2020 to October 2021
In 2020, Australia’s coronavirus infection rates occurred in two waves: (1) March to April and (2) June to September. This second wave was mostly constrained within Victoria (VIC). The Australian Government’s response to COVID-19 totaled 28,500 infection cases and 909 deaths among a population of over 25 million people (Australian Institute of Health and Welfare (AIHW) 2021). When compared to Sweden, Canada, and the UK, the Australian government’s swift efforts effectively protected its citizens through enforced social distancing, restrictions, hygiene campaigns, coronavirus information initiatives, and lockdown (AIHW 2021). The 2020 COVID-19 vaccine rollout prioritized health care and public safety workers and the elderly aged 60 years and over, including the immunocompromised and their carers and/or family members. With significant infections of the Delta variant spiking from June 2021, especially within New South Wales (NSW), Queensland (QLD), and VIC, much of the Australian public had not received a single dose of a COVID-19 vaccine. Overall, Australia has been slower than most other Western countries to immunize their population, making it one of the lowest performers in the vaccine rollouts (Organisation for Economic Cooperation and Development (OECD) 2021). In response to the 2021 infection rates, state premiers had enforced tougher restrictions and extended lockdowns to slow infection rates. For example, Melbourne surpassed Argentina and Buenos Aires with the longest time in lockdown, totaling 245 days (Boaz 2021). These lockdowns and restrictions would only originally be eased where a proposed 70% of the national population were fully vaccinated. With greater vaccination rates, it is logical to assume eased lockdowns and restrictions would occur, with a return to workspaces, family visitations, and public gatherings. These privileges initially applied to those who were fully vaccinated, receiving two doses of either the AstraZeneca or Pfizer vaccines. The Australian Government emphasized that COVID-19 vaccines are not mandatory, whereby the public retained autonomous choices for themselves, their underaged children, or those incapable of making an informed choice under their care. To receive privileges, the population needed to meet a threshold of fully vaccinated people to safely resume their lives out of lockdown. This condition remains ubiquitous, with other countries enforcing similar rules. Yet across the cities of Melbourne and Sydney, lockdown
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protests ensued in retaliation to this decree, viewed by some as impinging on personal rights and freedoms, regardless of being vaccinated or not.
2.3
Government and Public Influences on the Vaccine Rollout
While lockdown protests may be an unsavory reaction during a global pandemic, the Australian Government’s approach to the vaccine rollout has been inequitable – especially where citizens have been urged continuously to vaccinate. The vaccine rollout implemented an eligibility criterion, unequal distribution of available AstraZeneca and Pfizer vaccines, and inadequately translated COVID-19 information affecting people of Culturally and Linguistically Diverse (CALD) backgrounds. The vaccinations may not have been mandatory, but implied privileges that are fundamental necessities to live have indicated otherwise, including the ability to work in roles that cannot be fulfilled at home or care for sick and distant family members. If not mandatory for all, then for the majority. To become vaccinated, two options were originally present from early 2020 through to 2021. The public could attend participating medical centers or doctors’ offices to receive one of two available vaccines: AstraZeneca or Pfizer. Otherwise, a hospital or vaccine clinic booking could be made through state or territory government websites. Part of this booking process included undergoing the mentioned eligibility assessment. In 2020, this assessment was based on a person’s age, employment, and health condition to deem their eligibility to be vaccinated. By 2021, this approach had become controversial, given the increased infection rates and the Government urging for all over the age of 18 to become vaccinated. Without immediate changes to the eligibility criterion, many were delayed from receiving any vaccinations. By August 2021, the parameters of the eligibility criterion were removed, with the assessment instead recommending which vaccine brand individuals should get. Pfizer was recommended to those under 60 years of age and/or those with underlying health conditions. However limited doses of Pfizer made it difficult to receive, particularly where available doses were beyond one’s local government area. As a result, age restrictions were removed from AstraZeneca, available for anyone to receive. Further developments of the vaccine rollout included walk-in vaccine clinics and distribution of vaccines at participating local pharmacies. These improvements of expanding local availability of vaccines were arguably implemented quite late, during a period where states such as NSW reached over a thousand daily infection cases. Contrary to popular opinion, the Australian Government cannot be regarded as the sole perpetrator negatively affecting the vaccine rollout. Discussions surrounding the ethicality of vaccinations have been rampant for decades, resurfacing with ferocity since the development of the COVID-19 vaccines. Much controversy surrounds the efficacy of vaccinations in general, despite evidence of their ability to prevent diseases (e.g., meningococcal and measles) and, in some cases, eradicate them (e.g., polio; Greenwood 2014). Common criticisms among the Australian public have been aimed at the rapid development of
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COVID-19 vaccines, including a lack of research to assess their effectiveness and associated side effects – especially aimed at AstraZeneca. With these criticisms, conspiracy theories about coronavirus and the vaccines inevitably surfaced. Examples of popular conspiracies include claims that the vaccine is intended to link human beings to 5G networks to be controlled by government entities (The Department of Health 2021c); governments intending to reduce global population size through either the virus or vaccinations (Islam et al. 2021); or that the flu or common cold has been relabelled as coronavirus, being curable through natural remedies such as intake of vitamin C or garlic (Abdoli 2020). Other arguments against vaccines centralize religious prohibitions regarding associated ingredients. The religious discourse surrounding the COVID-19 vaccine will be explored later. Distinctive to Australia’s vaccine rollout has been the AstraZeneca and Pfizer debate. Concerns have centered on perceived “oversupply” of AstraZeneca vaccines, with 58.3 million AstraZeneca doses compared to ten million doses of Pfizer initially secured by the Government (The Department of Health 2021a). Like the UK and USA, the Australian Government contracted Oxford University, funding them in the development of AstraZeneca (The Department of Health 2021a). This given information is not to suggest that the AstraZeneca vaccine is ineffective. It is instead posited that the abundance of AstraZeneca vaccines contributed to unfair distributions when Pfizer was not readily available, particularly for those it was recommended for through the eligibility criterion. Without an equal amount of Pfizer, Australia has been perceived as having a vaccine shortage, with Poland and the UK donating millions of their own Pfizer vaccines (The Republic of Poland 2021). Yet, AstraZeneca has demonstrable effectiveness against coronavirus (Bernal et al. 2021), with many European countries, such as England and Belgium, distributing the vaccine in large quantities. Media sensationalism surrounding the linkage of AstraZeneca to thrombosis with thrombocytopenia syndrome (i.e., blood clots and low platelet levels) has deterred many eligible citizens from voluntarily receiving it. In addition to these two major vaccines, there were two more supply deals for Moderna and Novavax vaccines undergoing approval by regulators, until the end of 2021. Pfizer vaccines are seemingly viewed as the only acceptable alternative by many within the public, despite the vaccine’s linkage to pericarditis and myocarditis (The Department of Health 2021a). Major side effects from these vaccines are relatively rare, and often linked to allergic reactions and pre-existing conditions (Bernal et al. 2021).
3
COVID-19 as an Ethical Dilemma: Mandatory Vaccinations
During global pandemics, Savulescu (2021) argues that there are set conditions in which mandatory vaccination can be ethically justifiable, as seen in the context of coronavirus. First, the threat of coronavirus is a threat to public health and safety, with most global, national, and state populations at high risk of being infected. The increasing fatality of the virus cannot be ignored, with over five million known deaths worldwide (WHO 2021). Second, the produced vaccines are demonstrably
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effective at mitigating the effects of the virus and are safe (see Henry et al. 2021; Pilishvili et al. 2021). Third, the benefits of mandating the vaccines outweigh the implications caused by the virus, for example, mitigating death, organ damage, and respiratory issues. Fourth, non-compliance to the vaccine and/or safety mandates endangers others (such as traveling during curfews and not social distancing, increasing the likelihood of spread of infection), which should incur proportional penalization (e.g., fines and arrest). Savulescu (2021) is not alone in advocating for this approach (see Brennan 2016; Rus and Groselj 2021; Gostin 2018), whereby vaccines are morally portrayed as both individual and collective duties. Mandating vaccinations may seem punitive. However, the long-term psychological, physiological, and social effects of the pandemic are grossly misunderstood. There are other areas of concern that are less likely to be acknowledged and discussed as well. For example, diagnoses of other serious health issues (e.g., autoimmune disorders, diabetes, or cancer) may be prolonged due to the inability to access medical services that screen and offer treatment solutions. Individuals with mental health concerns, such as suicidal ideation, are missing from the conversation regarding the cost of COVID-19 and the hesitancy or reluctance surrounding vaccination. The prolonged delay in getting vaccinated from COVID-19 creates a dilemma in other areas of health concerns that remain unmentioned but are of equal importance. The sooner vaccination rates are achieved, the sooner other diseases can be readily intervened and potentially be less fatal due to earlier detection or intervention. It remains unknown if in comparison to the effects of the vaccine, the virus itself will have greater implications, due largely to its ability to mutate as seen with the Delta variant. The recent variant emerging during November 2021, known as the Omicron variant, raises concerns that vaccine inequality is a likely contributing culprit to the rise in coronavirus mutations. This concern is attributed to the fact that variants have originated in developing countries with lower vaccination rates. For example, the earliest documentation of the Lambda variant originated in Peru and the Omicron variant from South Africa, while Delta was originally detected in India (WHO 2021). Accordingly, recorded statistics by Our World in Data demonstrates from November 27, 2021, only 5.7% of people in low-income countries have at least received one COVID-19 vaccine dose. In Africa, this number is only as high as 7.15% of people being fully vaccinated, compared to Australia’s 73% vaccination rate. While there are many ethical arguments against vaccinations, there are also many moral reasons to vaccinate due to the collective safety of the population. Advocates (including governments) and non-advocates of the COVID-19 vaccines often frame their arguments in terms of individual self-interest, which does not fully constitute ethical reasoning (Gunnemyr 2019; Thiroux and Krasemann 2012). For example, lockdown protests emphasize a need for individual freedoms, often without being vaccinated. Meanwhile, government initiatives emphasize vaccinations as a form of self-protection against diseases. While individuals, for the most part, retain autonomous authority over their own bodies, vaccinations imply an incredibly intimate duty. Vaccinations can appear to be intrusive, whereby individuals allow another to inject a foreign substance into their body that will change or
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influence some part of their human physiology. However, people willingly ingest substances they do not fully understand many times. Some substances are seemingly innocuous, such as paracetamol; known to be harmful, such as tobacco or marijuana; and even other illicit drugs, such as cocaine and methamphetamines. These substances are often taken when there seems to be individual autonomy to do so, or when there seems to be no choice at all, as in cases of fatal illnesses. While people cannot demand others to vaccinate, the vaccinated and those unable to vaccinate due to underlying conditions certainly retain the right not to physically interact with the non-vaccinated, particularly those who are at higher risk of developing fatal symptoms. However, the exclusion of the unvaccinated participating within society, especially from work and what are considered non-essential retail shops, contradicts the notion that vaccines are non-mandatory. For example, unvaccinated Victorians may not be able to visit non-essential shops until 2023 (Kirchhoffer 2021). Further to these circumstances, provisional proof of vaccination upon entry as required by most institutes and businesses opens avenues for discrimination and segregation, even where the individual in question cannot be vaccinated due to health reasons. Some will even go as far to present fake proof when not vaccinated (Sun et al. 2021). As such, the line between people’s freedom of movement and association from an ethical standpoint remains unclear. Overall, the appeal of collective moral duty to vaccinate is simply ignored or overthrown. In his reflection on global climate change, Gunnemyr (2019) posited that if individuals do not believe that their actions will make meaningful differences to a collective outcome, then there is no perceived duty to act. For example, there is no perceived incentive to limit personal waste among a collective of millions of people, who may or may not be contributing to the same goal. This premise rings true in the current climate of the pandemic. Collective moral duty is overthrown when individual action to vaccinate is argued to be dangerous or lunacy, as seen in the context of public discourse surrounding the Australian vaccine rollout. When individual self-interest in getting vaccinated is misconstrued, affecting collective vaccination, this gives rise to the most dangerous perpetrators of increased infection rates for a controllable disease. These perpetrators include vaccine hesitancy, lowered health literacy, and vaccine misinformation. Butler and MacDonald (2015) alleged that vaccine hesitancy is not as straightforward as the term implies. They explicate that vaccine hesitancy refers to delayed acceptance or refusal to vaccinate, even with prominent supporting research and services to safely offer it. Vaccine hesitancy influences people’s complacency in accordance with time, place, and the vaccine in question. For example, due to the fast development of the COVID-19 vaccines, many globally questioned their effectiveness and safety. How people then understand information about general health and health care, and how they apply this information to their lives to make health-related decisions and actions, constitutes health literacy (Workman et al. 2021). In turn, health literacy is further affected by health misinformation. Individuals gather information from conflicting sources, such as news, social media, and non-medical
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professionals, trusting in this information despite evidence-based research which is peer-reviewed and conducted by professional practitioners. For global health initiatives addressing pandemics to be successful, it is vital to understand how vaccine discourse nullifies ethical reasoning and responsibility. Governments and health organizations can alleviate public misunderstandings and hesitancy to deliver quick and effective responses to global health crises. In consideration of creating a uniform approach to global health issues, such as the coronavirus pandemic, the authors examined the Australian Government’s vaccine rollout from a philosophical lens. This examination considers the strengths and weaknesses of the Australian Government’s approach to vaccinating its citizens, which includes the role of public discourse on vaccinations. The given account of the Australian vaccine rollout, including arguments for and against vaccines, can be analyzed from two schools of philosophical thought: Teleology and Deontology. These schools of thought allude to Universal Ethical Egoism, Utilitarianism, and Divine Command Theory. Fundamentally, governments and organizations need to implement a rule-based Utilitarian approach to promote the greater good in conquering vaccine hesitancy and misinformation, allowing citizens to make informed decisions regarding their own health.
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Overview of the Ethical Theories
It is important to divulge an understanding of the three theories prominent within the Australian vaccine rollout discourse. While bioethics is important to the field of medicine, this chapter approaches developing global health initiatives from a social science lens. Further, a consideration that health is more than merely the absence of disease is important, which the biomedical model assumes (Workman et al. 2021) and current approaches and arguments towards COVID-19 are firmly embedded in this assumption. Health and the health of individuals must be considered in the context of an individual’s capacity for earning an income, having a connection to community, being able to engage in different environments, as well as religious and spiritual well-being (Workman et al. 2021). Each of these aspects is commonly understood in the model of Indigenous Australians’ health perspective holistically and not as distinct aspects, each being more important than the other (Workman et al. 2021). According to Mandal et al. (2016), there are two branches of decision-making implicated within medical ethics: Deontological and Utilitarian (being Teleological) approaches. When developing a global health initiative based on Utilitarianism, the initiative should implicate any tools, resources, services, and/or theories that will benefit the collective good of society. Teleological approaches, also known as consequentialism, claim that decisions and actions should be judged as moral based on the consequences they elicit, such as Universal Ethical Egoism and Utilitarianism (Mandal et al. 2016; Thiroux and Krasemann 2012). Deontological approaches or non-consequentialism judge decisions and actions because they are only moral or immoral rules, as seen with Divine Command Theory. Each of these
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theories is categorically normative, propagating what people should or ought to do to be moral beings. An overview of these three theories is provided next.
4.1
Universal Ethical Egoism
Universal Ethical Egoism suggests that everyone ought to act in their own selfinterest, regardless of the interests of others (Thiroux and Krasemann 2012). This means that helping others is only moral when it is within one’s own self-interest to do so. While a seemingly selfish outlook, Universal Ethical Egoism is still categorized as an ethical theory because it is applicable to all human beings. Universal Ethical Egoism is a subcategory of Ethical Egoism. It is not entirely a selfish theory as it allows for serving others. Ethical Egoism’s other two forms include Individual Ethical Egoism and Personal Ethical Egoism. Individual Ethical Egoism advocates that everyone ought to act in “my own best self-interest” and Personal Ethical Egoism states that “I ought to act in my own self-interest” but makes no claims about what others ought to do. Both Individual and Personal Ethical Egoism are ignored in the context of public health crises because they generally cannot be applied to a whole populace, unlike Universal Ethical Egoism. Given that global health crises do not occur only to isolated individuals, both Individual and Personal Ethical Egoism are generally incompatible. While these forms of Ethical Egoism certainly do occur in public discourse, there are no beneficial lessons to be taken away from them in the context of creating uniform approaches to global crises.
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Utilitarianism
Utilitarianism determines decisions or actions as moral – being good or bad – depending on their outcomes. Decisions or actions are judged as morally good where they benefit the most people involved, bringing about the greatest good or happiness (Mandal et al. 2016), and vice versa if they cause greater pain or unhappiness to the involved group. A classic example of Utilitarianism in practice is “The Trolley Problem” (Andrade 2019). At a lever of a rail, you notice a trolley speeding and about to crash into a group of five people. If you pull the lever, the trolley will roll onto another track, but it will hit and kill one person. If you leave the lever, the trolley will continue on its current track, but it will hit and kill five people. Do you pull the lever to divert the trolley to sacrifice one person, or leave the lever and sacrifice five people? A Utilitarian would argue that the moral decision and action would be to pull the lever, sacrificing the one person to save five people. Utilitarianism can, therefore, take either an “ends-justifies-the-means” or “costbenefit” analysis and determine the best outcome of any problem. However, Utilitarianism is not always straightforward in its approach, with two forms to consider, being Act and Rule. Act Utilitarianism proposes that everyone ought to perform the action that will bring about the greatest good or happiness for the majority involved (Nathanson 2021). Like Universal Ethical Egoism, Act
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Utilitarianism takes an individualistic approach to determine how to act morally, meaning the person must decide what the greater good constitutes. Rule Utilitarianism contradicts this. Rule Utilitarianism proposes that everyone ought to follow the established rules that will bring about the greatest good or happiness for the majority involved. Both Act and Rule Utilitarianism follow the same basic premise, requiring individuals to evaluate the potential outcome of their decisions and actions. Rule Utilitarianism however takes away full individual agency to make personal evaluations, as people must act according to the rules set by an authority to achieve the best outcome. Rule Utilitarianism is much like following the road rules or workplace policies.
4.3
Divine Command Theory
As a Deontological theory, Divine Command Theory does not regard the outcomes of actions or decisions to determine their morality (Thiroux and Krasemann 2012). The only basis of morality is through the established rules, meaning that the endsdoes-not-justify-the-means. This theory may seem similar to Rule Utilitarianism, but it is not about achieving the greatest good for all involved because it is focused on the outcome for the individual. Divine Command Theory sets morality as following the rules established by a higher divine being or beings, who have communicated to human beings what they should and should not do. To be moral, humans should follow the established commands of the One or Ones they follow, regardless of the consequences. This makes divine rules absolute, such as “do not tell lies” or “do not kill.” Adherents of this theory, however, assume that such supernatural beings are inherently moral.
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Universal Ethical Egoism, Vaccine Hesitancy, Literacy, and Misinformation
Universal Ethical Egoism stipulates that morality stems from acting in self-interest. As such, helping others is morally ordained when it further serves individual selfinterest. As seen from the Australian Government’s vaccine rollout and discourse surrounding vaccine efficacy, self-interest is interpretable in one of two ways: accept or refuse vaccination. However, when considering vaccine information, it is not always clear what would be in one’s self-interest. It is certainly arguable that not everyone is adept at deciding what their self-interest might be – for example, young children or people with developmental or intellectual disorders. Accepting COVID-19 vaccinations can be perceived as serving one’s self-interest where it protects the individual from developing severe or fatal symptoms. It is further within everyone’s self-interest to serve the self-interest of others where the vaccine contributes to herd immunity. Herd immunity occurs when a large portion of a group, community, or population (i.e., the herd) become immune or protected against disease (Savulescu 2021). The ensuing result means that the spread of the
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virus is unlikely or reduced due to developed antibodies. If not everyone, then most will be protected from the virus’ symptoms, including those who have not been vaccinated. Personal benefits of COVID-19 vaccines have been contradicted, based on concerns raised from personal anecdotes of politicians, celebrities, and community members across different media platforms. In some cases, the Australian Government’s COVID-19 information campaigns, particularly during early 2020, did not always inspire confidence when appealing to individual benefits of being vaccinated. For example, on the Australian Government (2020) website, statements that alluded to needed efficacy testing undoubtedly also contributed to vaccine hesitancy. Without immediate reassurance given by the Government, it had been difficult to ascertain if it was within best self-interest at the given time of the vaccines’ introduction. Even with recent studies now demonstrating efficacy and effectiveness, hesitancy ensues as the vaccines do not guarantee to cure or fully halt the transmission of coronavirus (Savulescu 2021). There are misconceptions that the Australian Government (2021) has further contended with, including that these vaccines inject the live virus directly into our systems, and that these vaccines alter genetic material in some way. This transparency of information did not extend to all Australian communities, affecting the ability of individuals to determine if vaccination was within their self-interest. In helping community members make an informed decision to get vaccinated in their self-interest, the Australian Government failed in helping people of CALD backgrounds. In their research, Seale et al. (2021) investigated the Australian Government’s communication and engagement with CALD people during the pandemic. In addition to communication and engagement barriers, they found information gaps in available information. While the government did promote and translate coronavirus information online, much given information was inadequately translated through Google Translate. This apparatus of language translation misses or mistranslates contextual information, being considerably inaccurate. Such an approach to translating critical information misses utilizing other mediums of communication, such as ethnic newspapers and radio stations, and partnerships with CALD leaders, such as ambassadors (Seale et al. 2021). Without sufficient information to make a cohesive and informed judgment to vaccinate or not, many CALD community members would be at higher risk to contract the virus. For example, to help make personal judgments, Seale et al. (2021) found that people of CALD backgrounds turned to news from their home countries or communicated with family members overseas. Such types of information sources to base personal judgments on are dangerous, as they do not reflect the Australian experience of infection rates, vaccination types, or general safety mandates and advice. Further misinformation has been spread by celebrities for others to base personal judgments on. International celebrities, such as Nicki Minaj and Doutzen Kroes, have shared their views on the COVID-19 vaccines. This given advice or perspectives on the vaccines blur the barriers between celebrities, politics, and medicine – none of which exclusively belong together. These unclear barriers can contribute to
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individual decisions not to vaccinate, causing further mistrust in the medical community. For example, Nicki Minaj shared her cousin’s experience of being vaccinated, linking the vaccine to a side effect of enlarged genitalia, which has since been debunked (Olutola 2021). Similarly, Doutzen Kroes expressed that she would not be “forced” to vaccinate. Kroes has in the past given misinformed health advice, such as a liver cleanse that included ingesting Epsom Salts, on YouTube in 2020 (Malamut 2021). Adding to this, Australian celebrity chef Pete Evans had been fined by Australia’s Therapeutic Goods Administration (TGA; 2020) for promoting the “BioCharger.” Evans claimed this device could cure coronavirus on a Facebook live stream. Such claims made by celebrities reflect anti-vaxxer criticisms against vaccinations which are intended to save lives, even if not directly taken by all. In consideration of Universal Ethical Egoism, vaccination mandates that advocate receiving vaccines simply for individual benefits will generally not be effective. Where actions have been perpetuated as serving one’s self-interest, it does not necessarily motivate people to act morally without first addressing misinformation to improve health literacy. It has not always been clear how vaccinating will be in one’s self-interest, particularly where given information, whether factual or not, from celebrities, governments, and the medical field coalesces. Where the government is not trusted to hold the best interests of their people, vaccinations will be argued to not be in no one’s self-interest. As such, the Australian Government has contributed to vaccine misinformation, as seen from its silence on contracted vaccine development and mistranslated information into other languages. When arguing for herd immunity as a form of self-interest, many Australians have delayed receiving vaccine doses, essentially waiting for others to “take one for the team.” Such delays allow others to make personal judgments to whether the COVID19 vaccines are beneficial, seen to mitigate the potential risks associated with AstraZeneca and Pfizer vaccines. Following this approach aligns with the principle of Universal Ethical Egoism, whereby misinformed leaders, celebrities, and the public have shared anecdotes contributing to mistrust in the medical community, despite emerging evidence-based research.
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Divine Command Theory, Vaccine Hesitancy, Literacy, and Misinformation
No major religion in Australia has strictly forbidden COVID-19 vaccinations. In fact, many religious leaders have played roles in combating vaccine misinformation in their communities. For example, The Australian National Imams Council had addressed Muslim communities through local mosque prayer meetings, emails, and social media to encourage vaccination against COVID-19. Similarly, local churches, such as the Lutheran Church of Australia, also encouraged eligible citizens to undergo vaccination. In many religious doctrines, it is not always clear what is permissible regarding medical interference. Accounts for and against vaccines among leaders and public followers, particularly of different religious sects, are
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often conflicting, intermingled with individual interpretations of religious mandates. It could be argued that individual interpretations further apply to government vaccine requirements, wherein political leaders may propagate their views (whether underscored by religious principles). Arguments against vaccines usually centralize on religious prohibitions concerning specific ingredients. Other religious arguments broadly suggest that science is interfering with the will of divine beings. This argument is commonly seen in the context of sexual and reproductive health on issues such as birth control and abortion. The cause of vaccine concern is often due to assumed ingredients that are religiously prohibited to be ingested but are generally not verified if they are contained within the COVID-19 vaccines. As such, a common argument against vaccinations is that the public is not informed or does not know what these vaccines contain, meaning that immunological industries are hiding the usage of unethical ingredients. Such information can be accessed online, albeit difficult to find, with ingredients such as sodium chloride, potassium chloride, and sucrose, listed for AstraZeneca and Pfizer on the TGA (2021a, b) website. Such information needs to be transcribed for people of CALD backgrounds, regardless of their religious standing. This preceding issue presents a gray area, whereby it is difficult for governments to bar unvaccinated people from participating in certain activities, as has been done in some Victorian and NSW industries, where some warrant a religious exemption (Trent et al. 2019). For example, in 1998, the church was granted an exemption to the Federal Government’s “no jab, no pay” laws, meaning children had to be vaccinated for families to receive childcare and family benefits (Trent et al. 2019). The church was the only religious institution to receive this exemption, requiring parents and/or carers to provide a letter from a church leader. Such exemptions seem unlikely during the coronavirus pandemic, with more religious institutions being in support of the vaccinations. For example, within the Sydney Muslim community, rumors surrounding the use of pork-based ingredients exempt them from being vaccinated (Kadari 2021). Similarly, some within the Indigenous Christian community were informed by American-based preachers that injecting the vaccines would be akin to injecting Lucifer’s blood (Parke and Lynch 2021). Similarly, alleged rumors that the vaccine would cause more harm than good, associated with causes of infertility, permanent changes to genetic changes to genetic material, and death (Islam et al. 2021), would further deter people of any religious standing from taking the vaccine. These arguments against vaccines are not unique, being communicated across the world, but stagnating the Australian vaccine rollout causing further distrust in both the government and medical community. Specifically, where the vaccine is denoted to impinge on religious beliefs and practices, there are some ethical concerns associated with this. First, it is not always apparent who is sincere and authentic when claiming a religious exemption to being vaccinated. Second, if the claims of religious exemption are sincere, then it is difficult to ascertain to what extent the unvaccinated person should be accommodated, considering work, study, and participation within communities.
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Utilitarianism, Vaccine Hesitancy, Literacy, and Misinformation
The authors of this chapter advocate for a Utilitarian approach to addressing global crises, such as COVID-19 and its associated vaccine rollout. The authors specifically advocate for a Rule Utilitarian approach. It is through set rules grounded in expert knowledge and advice that the greatest good or happiness can be achieved to overcome dangerous misinformation, which undermines health literacy and contributes to vaccine hesitancy. Such an approach contradicts Act Utilitarianism because it does not allow for individual discretion to act on what is personally perceived as the greater good for involved others. While this may seem a somewhat punitive approach to take, it allows for experts of all fields and standing to stipulate the rules in the most direct and transparent ways. From analyzing the Australian Government’s vaccine campaign and public pandemic discourse, much vaccine advocacy and condemnation has discussed vaccines primarily in terms of self-interest. During crises, such as pandemics and climate change, appealing to self-interest does not necessarily highlight personal duty, as it is difficult to determine the impact of individual action on a collective outcome (Gunnemyr 2019). Perceived self-interest is further influenced by added misguidance from often well-meaning celebrities, politicians, news outlets, and religious leaders. People are likely to wait for others to become vaccinated first to decide if it is in their self-interest, before contributing to the greater good or happiness of the global population. Despite some unsuccess of the vaccine rollout, such as the eligibility criteria and disproportionate supply between AstraZeneca and Pfizer vaccines, each Australian state and the federal government has successfully mitigated what could have constituted uncontrollable infection rates through enforced lockdown and restriction rules. To alleviate lockdowns and restrictions, the Australian Government mandated that most of the population, originally up to 70%, must be vaccinated to resume daily life (Woodley 2021). Since this goal has been reached, states and territories have pushed for their populations to reach an 80% fully vaccinated rate, due to the contagious severity of both the Delta and Omicron variants. While the second lockdown experienced within Australia was not as successful as the first when compared to nations such as the UK, America, and Canada, strictly enforced rules helped to control infection rates and deaths. This overall success does not fully excuse the Australian Government’s misinformation about vaccines surrounding people of CALD backgrounds. People of ethnic minorities or Indigenous communities experienced higher numbers of infections and death due to lower financial resources (Smith and Judd 2020), and overworked health services in areas with higher Indigenous and ethnic minority populations (McLeod et al. 2020). High mortality rates from COVID-19 are further attributed to the spread of misinterpreted information targeting people’s insecurities and health vulnerabilities through the exploitation of religious and scientific mediums. By arguing in favor of Rule Utilitarianism, governments, with the help of leading world health organizations and experts, must determine the rules first to always be
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prepared for the worse. This approach will circumvent unnecessary and unfair restrictions that impact on national economy, well-being, and health and safety. As such, Savulescu’s (2021) conditions for mandatory vaccination set the precedent for enforcing the rules to vaccinate that the public must abide by, despite any perceived or misinformed self-interests and health literacy. Mandating COVID-19 vaccines is ethically justifiable where the virus threatens public health and safety; produced vaccines have demonstrated effectiveness; the benefits of vaccination outweigh the implications; and non-compliance that threatens others’ safety can incur proportional penalties, as purported by Savulescu (2021) and others (see Brennan 2016; Giubilini et al. 2018; Gostin 2018). However, as much as vaccines are advocated for, it is just as unethical to force vaccinations on those who cannot take them for legitimate health and/or religious reasons, those who have not received informed consent, and those of the public who adamantly do not want it for personal reasons. Not enforcing vaccination may seem like a limitation of the Rule Utilitarian approach to addressing global health crises, but it can be addressed with additional countering rules that will benefit the majority while being fair to those who choose or cannot be vaccinated. While people reserve the right not to get vaccinated, individuals who are at high risk of infection and death from coronavirus reserve the right not to interact with unvaccinated people. This same rule applies to those who are vaccinated, regardless of health status. For example, Western Australia has intermittently shut its borders since 2020, to stop interactions with infected people, both within and outside the state. Many public arguments against such measures are that such counter rules technically undermine them, and they are forced to take the vaccine. The need to choose to be vaccinated cannot be denied, but neither can health be compromised. The necessity for enforced rules against vaccinations reinforces the fact that Australian hospitals do not have the capacity to deal with infection rates contained within Intensive Care Units. Further to this, it adds another dilemma regarding whose health gets compromised. For example, during July 2021 to October 2020 lockdown within NSW, elective surgeries were put on hold to prioritize COVID-19 patients. In the long term, such an approach to health care does not fulfill its function of beneficence, whereby prolonged waiting for some surgeries will inevitably worsen these conditions. For example, cancer patients have extended waiting periods before they can commence chemotherapy and other traditional therapies. Arguably, this may exacerbate the hospital system from providing care to people and see a death toll increase from non-COVID-19related conditions due to people’s willingness to not vaccinate and in turn clog up the hospital system. Moreover, people with diseases or infections which can be treated if intervened at an earlier stage of infection may have their results, tests, and interventions delayed which may see a higher death rate than that of COVID19-related issues. Similarly, non-vaccination raises a harder situation for governments and hospitals to address the prioritization of vaccinated patient care over non-vaccinated patient care.
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Recommendations
COVID-19 is a variation of the known virus SARS, and while there are preventive measures against many diseases, people still express vaccine hesitancy. While the above demonstrates individuals do have the right of choice, they must also weigh their decision against the choice to not protect others who may be more vulnerable. The Australian Government has demonstrated they are traversing a “brave new world,” whereby there is a myriad of challenges associated with the pursuit of getting it right. The following recommendations are what the authors of this chapter consider to be logical, appropriate, ethical, and equitable to formulate a uniform or similar approach to combatting COVID-19. 1. Continued transparency surrounding vaccine ingredients and other advancements in the fight against COVID-19 and its subsequent mutations is non-negotiable. 2. Harsher penalties (such as fines) should be imposed for spreading misinformation, particularly for those who target vulnerable communities and for people who do not abide by public health orders. These penalties extend to individuals who do not believe in COVID-19 and businesses who have loose interpretations of health rules as imposed by the Government. 3. Greater promotion of religious and/or CALD leaders’ positions on COVID-19 vaccines would be beneficial to counteract the abuse of religiosity or ethnicity as justification for not being vaccinated. 4. Real-time translations of non-English languages need to be distributed more readily, alongside English versions of the same documentation. Further, translations need to be accurate and align with all linguistic and grammatical functions of each translated language. 5. Greater accountabilities and penalties should be enforced for both news and social media outlets, including influencers and celebrities, which perpetuate lies and misinformation.
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Conclusion and Future Direction
While the current COVID-19 pandemic has brought out the best and worst of people, it is clear that current approaches can be improved. The Australian Government, as well as other world governments, needs to consider the needs of the people and the distribution of clear and accurate information. The approach taken by the Australian Federal Government and their stagnated vaccine deployment has ensured that misinformation, anti-vaxxer arguments, and propaganda have taken hold in people who arguably are afraid. The current situation and fears generated by media outlets, and people abusing religious ideologies with false information, have not garnered public confidence. Despite these stark limitations, it is clear that a Rule Utilitarianism approach to addressing vaccine updates is straightforward. While people have abused religious interpretations to justify their positions, religious leaders continue to address these concerns for the communities they serve. Governments must be
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transparent and honest, ensuring that their citizens are protected and that realistic steps are taken to minimize the risks associated with COVID-19. Such an approach goes beyond public health-related issues such as other medical conditions, loss of life due to social isolation, and work and economic losses. It is no small feat to uphold the greatest good for the most significant number of people. However, the Australian Government’s approach overall has caused other harms that may have easily been preventable, which in turn, may have addressed greater engagement with vaccine uptake. As such, future directions of addressing global health issues need to incorporate the given recommended actions, particularly of professionals within the field. Integrated into this approach is the consideration of the voices of those at high risk or most affected by these global health issues, which may encompass the representation of ambassadors or selected leaders from these communities. The authors do not necessarily advocate for a linear hierarchical paradigm to implement a Rule Utilitarian approach but somewhat also emphasize a grassroots approach to achieving effective and efficient global health outcomes. As the current global pandemic will inevitably continue for the foreseeable future, it is important for Governments to consistently implement rulings (such as mask-wearing and hygienic practices) that will keep their citizens safe based on the rulings set by Savulescu (2021), even against the protestations that occur in retaliation. Given the exploration of Australia’s journey of COVID-19, infection rates will continue to fluctuate, particularly where rulings and regulations are invariably eased and tightened.
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Seale H, Woodland L, Mahimbo A (2021) Enhancing and supporting the COVID-19 vaccination program – focusing on culturally and linguistically diverse communities. In: UNSW Medicine. https://sph.med.unsw.edu.au/sites/default/files/sphcm/News/Enhancing-supporting-COVID19-vaccination-program.pdf. Accessed 3 Oct 2021 Smith J, Judd J (2020) COVID-19: vulnerability and the power of privilege in a pandemic. Health Promot J Austr 31:158–160. https://doi.org/10.1002/hpja.333 Sun X, Wandelt S, Zhang A (2021) Vaccination passports: challenges for a future of air transportation. Transp Policy 110:394–401. https://doi.org/10.1016/j.tranpol.2021.06.018 The Department of Health (2021a) Australia’s vaccine agreements. In: Australian Government. https://www.health.gov.au/initiatives-and-programs/covid-19-vaccines/about-rollout/vaccineagreements. Accessed 10 Oct 2021 The Department of Health (2021b) Comirnaty (Pfizer), Spikevax (Moderna) and cardiac inflammation. In: Australian Government. https://www.health.gov.au/initiatives-and-programs/ covid-19-vaccines/advice-for-providers/myocarditis-pericarditis. Accessed 11 Oct 2021 The Department of Health (2021c) COVID 19 and the new generation 5G mobile phone network. In: Australian Government. https://www.health.gov.au/news/covid-19-and-the-newgeneration-5g-mobile-phone-network. Accessed 30 Sept 2021 The Republic of Poland (2021) Poland supports Australia with 1 million doses of Pfizer vaccine – Poland in Australia – Gov.pl website. In: Website of the Republic of Poland. https://www.gov.pl/ web/australia-en/poland-supports-australia-with-1-million-doses-of-pfizer. Accessed 29 Dec 2021 Therapeutic Goods Administration (2020) Pete Evans’ company fined for alleged COVID-19 advertising breaches. In: TGA. https://www.tga.gov.au/media-release/pete-evans-companyfined-alleged-covid-19-advertising-breaches. Accessed 3 Oct 2021 Therapeutic Goods Administration (2021a) COVID-19 vaccine: Information for consumers and health professionals. In: Therapeutic Goods Administration (TGA). https://www.tga.gov.au/ covid-19-vaccine-information-consumers-and-health-professionals. Accessed 1 Oct 2021 Therapeutic Goods Administration (2021b) TGA batch release of Pfizer vaccine purchased from the Government of Poland. In: Therapeutic Goods Administration (TGA). https://www.tga.gov.au/ media-release/tga-batch-release-pfizer-vaccine-purchased-government-poland. Accessed 11 Dec 2021 Thiroux J, Krasemann K (2012) Ethics theory and practice, 11th edn. Pearson Education, New Jersey Trent M, Zhang E, Chughtai A, MacIntyre C (2019) Parental opinions towards the “No Jab, No Pay” policy in Australia. Vaccine 37:5250–5256. https://doi.org/10.1016/j.vaccine.2019.07.066 Woodley M (2021) newsGP – Vaccination targets set: National Cabinet agrees to pathway to new COVID normal. In: The Royal Australian College of General Practitioners. https://www1.racgp. org.au/newsgp/professional/national-cabinet-agrees-in-principle-to-pathway-to. Accessed 2 Oct 2021 Workman A, Houssain S, Liamputtong P et al (2021) Cultural models of health and health care. In: Dune T, McLeod K, Williams R (eds) Culture, diversity and health in Australia towards culturally safe health care, 1st edn. Routledge, Abingdon Oxon, pp 5–10 World Health Organization (2021) WHO Coronavirus (COVID-19) Dashboard. In: Covid19.who. int. https://covid19.who.int/. Accessed 1 Oct 2021 World Health Organization (2022) WHO Coronavirus (COVID-19) Dashboard. In: Covid19whoint https://covid19.who.int/. Accessed 10 Oct 2021 Xafis V, Schaefer G, Labude M et al (2020) The perfect moral storm: diverse ethical considerations in the COVID-19 pandemic. Asian Bioethics Review 12:65–83. https://doi.org/10.1007/ s41649-020-00125-3
The “Difficult Patient”: Dominant Logics and Misfits in Medicine Jelmer Bru¨ggemann, Lisa Guntram, and Ann-Charlotte Nedlund
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Difficult Patient . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Misfit One: Logics of Standardization and Complex Patient Needs . . . . . . . . . . . . . . . . . . . . . . . 4 Misfit Two: Logics of Normalization and “Atypical” Bodies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Misfit Three: Logics of Patient Activation and Being Active in the Wrong Way . . . . . . . . . 6 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Medicine is organized around specific kinds of patients. In the cross-section of overarching biomedical narratives, international and national regulations and guidelines, and local practices, a particular kind of “ideal” patient is produced. The ideal patient embraces the larger biomedical paradigm, fits standardized diagnostic or treatment protocols, and behaves in expected and respectful ways. At the same time, its downside is created. Modern medicine’s narrow pathways create all sorts of “difficult patients.” Rather than focusing on the “difficult patient” as a psychological or relational struggle for individual care professionals or patients – a common focus in medical literature and debate – this chapter approaches the “difficult patient” as a phenomenon inherent in the ways in which medicine is organized. It shows how the difficult patient can provide an analytic lens through which individuals can see health care norms and logics in play. In
J. Brüggemann (*) · L. Guntram Department of Thematic Studies – Technology and Social Change, Linköping University, Linköping, Sweden e-mail: [email protected] A.-C. Nedlund Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_138
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particular, the chapter discusses how the difficult patient comes into being in “misfits” between dominant logics in medicine and individual patient lives and needs. Keywords
Difficult patient · Noncompliance · Sick role · Standardization · Normalization · Active patient · Logics of care
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Introduction
Medicine is organized around specific kinds of patients. In the cross-section of overarching biomedical narratives, international and national regulations, and guidelines and local practices, a particular kind of “ideal” patient is produced. The ideal patient embraces the larger biomedical paradigm, fits standardized diagnostic or treatment protocols, and behaves in expected and respectful ways. At the same time, its downside is created. Modern medicine’s narrow pathways create all sorts of “difficult patients.” Rather than focusing on the “difficult patient” as a psychological or relational struggle for individual care professionals or patients – a common focus in medical literature and debate – this chapter approaches the “difficult patient” as a phenomenon inherent in the ways in which medicine is organized. It shows how the difficult patient can provide an analytic lens through which individuals can see health care norms and logics in play. In particular, the chapter discusses how the difficult patient comes into being in “misfits” between dominant logics in medicine and individual patient lives and needs.
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The Difficult Patient Admitted or not, the fact remains that a few patients kindle aversion, fear, despair, or even downright malice in their doctors. (Groves 1978, p. 53)
This is the opening sentence in what is now a classic text in studies of patient– physician relationships, in which Groves describes and reflects upon what he calls “hateful patients,” such as the stereotypical clingers, demanders, or help-rejecters. A broad literature search on the concept of the “difficult patient” will yield numerous articles in medical journals that in a similar fashion describe the characteristics of the difficult patient (see Hahn et al. 1996), or give practical advice to care professionals about how to deal with such patients (Everly 2021). Many have also argued for a shift toward a focus on the difficult encounter, emphasizing patients’ and care professionals’ responsibilities in clinical interactions (Smith 1995; Strous et al. 2006). The difficult patient has also received attention from the social sciences, with a lot of medical sociological work done in the 1970s. Many have linked
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conceptualizations of patients as problematic or difficult to work about the “sick role” by Parsons (1975). Accepting the sick role, Parsons argues, implies a number of criteria. A first is to accept that being sick is not the person’s own fault, and that they can thereby not be held responsible. A second is that the sick person is exempted from taking part in otherwise mandatory activities such as work or school. A third is that the sick person is expected to try to get well and seek qualified help, i.e., from medical experts, and to cooperate with the expert. Patients who do not fulfill these criteria, and who do not accept the sick role, risk ending up being clinically positioned as bad patients, and “punished” accordingly. Jeffery (1979) identified unwritten rules similar to Parsons’ criteria in an analysis of ways in which patients were socially or morally evaluated by staff working at casualty departments. Patients categorized as “rubbish” would either: be seen as partly responsible for their illness; not restrict their activities in accordance with their illness; not see their illness as an undesirable state; or not cooperate. In a similar fashion, Strong (1980) identified three principles for conventional medical practice that difficult patients seem to break: the assumption of medical expertise; the belief that medicine primary deals with “natural” phenomena; and the assumption that patients normally want to get better and are motivated to comply with medical instructions. Patients who go or are outside of the boundaries of conventional or ideal practice make things annoying and difficult for medical staff, Strong argues. Dealing with patients who do this has been conceptualized as “dirty work”: performing the kind of degrading, disgusting tasks that are below the dignity of the profession (Strong 1980; Shaw 2004). Around the same time, May and Kelly (1982) pointed to a related, yet an opposite feature of the “problem patient,” namely, their refusal to acknowledge the legitimacy and value of nurses’ therapeutic endeavors. A recurring dimension in this early literature on illness behavior and patient expectations is the notion of compliance, or rather a failure to comply. While the social sciences have seemingly moved away from the concept, today it is still a widely used term in clinical and public health research (Spencer 2018). Gouge (2018, p. 117) states that “[a]s a master narrative of normalcy and control in biomedicine, the compliance mandate and a fixation on securing it continues to influence clinical encounters, treatment protocol, and research studies.” The non-fitting, the noncomplying patient is still seen as a major problem for care professionals and health care systems to “cope” with, despite societal movements toward stronger patient rights and less hierarchical, patient-centered care (Gouge 2018). In 2003, the World Health Organization described (non)adherence to longterm therapies as a worldwide problem of striking magnitude (World Health Organization 2003), and the sheer number of publications on the issue of compliance (and thus also adherence, see Stevenson and Scambler 2005) is enormous. The compliance mandate may over time have changed shape in terms of concrete demands and expectations, and how they are monitored and measured, yet it keeps to the same narrow understandings of autonomy, health, and care (Gouge 2018). That is, patients are expected to make autonomous, rational decisions along narrow pathways of care toward biomedically defined health ideals: “[t]he neoliberal strategy is to compel
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actors to express their agency in line with official goals and to subject actors to penalties for error or for failure to comply” (Petersen 2003, p. 195). This chapter focuses on three logics that shape the current compliance mandate: standardization, normalization, and patient activation. This is not an exclusive set of logics, and neither are these logics omnipresent in any health care setting around the globe. However, they are related to key building blocks of contemporary neoliberal biomedicine. These building blocks include (but are not limited to) specific definitions of health, how good health is acceptably pursued, the classification of bodies, and the individualized, rational self (Fries 2008). All in all, the neoliberal, biomedical compliance mandate does not allow for much difference, divergence, and deviations. Rather, it produces particular kinds of potentially difficult patients. In what follows, the chapter addresses these three dominant logics (standardization, normalization, and patient activation) by looking at “misfits” between these logics and patient lives and needs. To do so, it builds on Garland-Thomson’s understanding of a misfit, which she uses as a concept in disability studies. According to this definition, a fit “occurs when a harmonious, proper interaction occurs between a particularly shaped and functioning body and an environment that sustains that body. A misfit occurs when the environment does not sustain the shape and function of the body that enters it” (2011, p. 594). In other words, a misfit stands for an incongruency between individual lives and the socio-material arrangements surrounding them. It is in these kinds of misfits that specific kinds of difficult patients come into being. Within this approach, misfits are seen as co-shaped by the particular contexts of, for example, the health care systems and sociocultural norms in which they arise. To illustrate these misfits, the chapter presents examples that illustrate how dominant logics may not fit individual patients’ lives and needs. However, these examples by no means cover all the instances when such misfits may occur.
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Misfit One: Logics of Standardization and Complex Patient Needs
Modern medicine builds on the logics of simplification and standardization (Mol and Berg 1994; Garpenby and Nedlund 2020). At a systemic level, policy processes play a key role in shaping these logics. At an individual level – for the specific patient and person concerned – these logics can have great implications in their everyday life. In public health settings and clinical practice, evidence-based medicine (EBM) is widely advocated and can here serve as an example of both logics of standardization and simplification. EBM has been described as “the conscientious, explicit and judicious use of the current best evidence in making decisions about the care of individual patients” (Sackett et al. 1996, p. 71). One major critique of EBM, however, is the danger of it relying excessively on a narrow kind of evidence, “which neglects and excludes knowledge of the cultural, financial, political, and individual aspects of health and illness, which are equally important in the provision of good care” (Knaapen 2014, p. 828). Policies, policy processes, and the
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construction of policy targets will be further disentangled below in order to understand these logics further, including how they affect individual patients. Policy processes should here be understood broadly. In medicine, policies can be found at the international level, e.g., stated by the WHO, at the national level in the form of government policies or national clinical guidelines, or more locally at clinics in the form of routines. However, these do not explicitly have to be written, but could also be a practice, i.e., routines created by actors involved in policymaking processes. A policy is, therefore, not a “thing,” but rather an idea that gives actors a way to make sense of and handle a specific situation (Nedlund 2012). Hence, policies are not only powerful tools for governing activities within welfare institutions; they do much more than this. Indicating how specific social problems should be handled, a central feature of welfare policies (Qvarsell 2013), policies also signal all kinds of normative ideas about how humans, matters, and situations should be understood and handled. This includes various conceptions of who is seen as needing or entitled to care, as well as how patients should be and act, or not be and act. The construction of targets is essential when allocating resources between different social groups (Schneider and Ingram 1997; Nedlund and Nordh 2018). Whether target groups are considered deserving of specific services or interventions when allocating public resources depends on whether the issue or their ascribed characteristics are considered a social problem (Nedlund and Nordh 2018; Schneider and Ingram 1997; Anderson 2013). A study on policy narratives around people living with dementia in Sweden revealed that people with dementia have not been defined as a specific policy target group in public policies (Nedlund and Nordh 2018). They were either seen as belonging to other target groups, mainly those of older people and people with disabilities, or completely overlooked in national public policy documents. Furthermore, Nedlund and Nordh (2018) also showed how policy processes simplify categories of people, presenting people with dementia as a homogeneous group. What is not shown in the policy documents is the heterogeneity of people in relation to, e.g., type of dementia, stage of dementia, identities, backgrounds, and preferences. Falling outside of policy targets, or not being a “stereotypical” patient leads to all kinds of difficulties for patients and their significant others in their everyday lives, e.g., not having access to necessary welfare services. Relatedly, simplified explanations and solutions may stigmatize individuals, as their social ways of being may deviate from the medical model’s standards. In addition, stigmatization and difficult patient status may also be inscribed in policy narratives. Nedlund and Nordh (2018) showed that policies have presented people with dementia in relation to their physical and psychological attributes as being “a burden” or “disturbing.” They are often depicted as a burden to themselves, to people within their surroundings, and to the state. Policy narratives shape and reproduce the construction of policy target groups and social problems linked to these groups, and emphasize stereotypical attributes ascribed to target groups (c.f. Stone 2012; Schneider and Ingram 1997; Nedlund and Nordh 2015, 2018).
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Questions of policy target groups in health care contexts are closely related to diagnosis and diagnostic practices. In a world of simplification, standardization, and homogeneity, a diagnosis in combination with a constructed policy target group decides how limited public resources should be allocated, and who will receive support and services (Nedlund and Nordh 2018). Thus, a diagnosis functions as a kind of gatekeeper for specific policy areas (Stone 2012), acknowledging specific symptoms, needs, treatments, and interventions. The significance of a diagnosis is also closely related to the way in which EBM reinforces a logic of standardization in medicine (Timmermans and Epstein 2010), through which scientific evidence is translated into diagnostic manuals, treatment guidelines, public health interventions, and care protocols. Difficult patients can come into being when their symptoms are uncommon; when medicine has limited knowledge; or when few interventions are available. One example of this is diseases defined as “rare,” which are diseases that affect less than 1 in 2000 patients. However, there are more than 6000 rare diseases, commonly of genetic origin, often chronic and life-threatening (see Eurordis – Rare Diseases Europe, a nongovernmental patient-driven alliance of rare disease patient organizations). In recent years, the term rare diseases have received greater attention due to a strongly organized patient group, but a patient with a rare disease still risks being overlooked in medical practice. Furthermore, patients might aim to get a diagnosis, yet if they receive a diagnosis its rareness can be experienced as deviating (Drakos and Hydén 2011). Another example is endometriosis, where studies have shown the devastating effects of diagnostic delay or ineffective treatment, in part due to the patients being positioned as difficult. This can be related to endometriosis being overlooked in public health policy and to taboos on menstruation (Seear 2009). Feminist scholars have also critically analyzed these difficulties in relation to medicine’s androcentric premises, as well as its promise and urge to treat, even in situations where they cannot offer any treatment (Young et al. 2019). This example also highlights how “vague” symptoms (in much of the medical literature a key characteristic of the difficult patient, see, for example, Everly (2021)) can be a product of ignorance in research, policy, and diagnostic standards, with ties to existing (male, white, abled) power structures. The examples of rare diseases and endometriosis show how the logics of standardization and simplification risks causing certain symptoms and experiences to be overlooked in clinical practice. This first misfit shows how powerful medicine is in defining disease at a systemic level, and how its standardizations and simplifications impact public health, care practices, and the everyday life of individual patients. As pointed out by Conrad and Schneider (1985, p. 23), “only law and medicine have the legitimacy to construct and promote deviance categories with the wide-ranging application. With medicine, this application even transcends social and national boundaries. The labeling of a disease and illness, the medical designation for deviance, is usually considered to have the universal application.” Further, care professionals also have an active role in the creation of new medical categories of illness where those patients whose noncompliance is commonly described in terms of deviance. This work of making categories commonly implies that those patients with complex needs do not fit into the logics of simplification and standardization, and thus become difficult patients.
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Misfit Two: Logics of Normalization and “Atypical” Bodies
Above we discussed how the logics of standardization on systemic levels shape who gets included and excluded in health care policies. A second misfit occurs between a dominant logic of normalization and the lived experience of “atypical” embodiment. Throughout history, deviations from what is considered standard or normal, in terms of both health and body appearance, have also resulted in interventions aimed to shape bodies according to statistical averages and/or sociocultural norms (see, e.g., Epstein 2007). Patients who do not comply with such interventions have risked being positioned as difficult. In contemporary medicine, the range of such normalizing interventions is vast. Most often positioned as increasing quality of life (in contrast to interventions aimed at saving lives) “normalizing” interventions may offer means to make life more “livable” for affected individuals. For example, breast reconstruction following cancer treatment has been demonstrated to be closely associated with expectations of “looking normal, feminine and sexy” and a return to everything being “normal again” (de Boer et al. 2015). However, individuals may still hesitate, as interventions associated with normalizing one’s appearance also often involve extensive efforts. For example, in an analysis of fixed appliances to improve and normalize the bite, Wickström (2016) demonstrates how patients might hesitate about treatment because of the effort it entails, but that they would still prefer the efforts over living with divergent teeth. Another striking example of this misfit is found in accounts of normalizing genital surgery for patients with conditions within the umbrella term “variations of sex development” (VSD). The umbrella terms VSD includes congenital conditions in which the “development of chromosomal, gonadal, or anatomical sex is atypical” (Lee et al. 2006, p. 488). It is also known as “disorders of sex development” – or alternatively “diverse sex development” (DSD) – and intersex. Research shows that when women born with no, or a “small,” vagina describe their motivations for treatment, they underscore their desire for normalizing surgery and/or dilation as it is believed to make them feel “more like everyone else” and acquire a body that “works” (Guntram 2013, p. 109; Holt and Slade 2003). In light of norms about female embodiment and (hetero-) sexual practice, such accounts also demonstrate the difficulty of imagining a future without what is medically defined as a normal vagina. Organized around a logic of normalization, treatment provides a possibility to align the body with that which is considered “typically” female and to potentially make one’s life more normal. However, the logic of normalization is also often demanding to those involved, who may refuse treatment or actively avoid complying with medically recommended treatment regimens that aim to maintain normal genital appearance (Boyle et al. 2005; Dreger 1999; Guntram 2013). In the end, the efforts of normalizing interventions may be too extensive and may even make life unlivable. In such cases, noncompliance may not necessarily involve active resistance to medicine as such (Spencer 2018, p. 179), but instead a refusal of and abstinence from treatment to make life livable.
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In contrast to the above, the misfit between logics of normalization and individual patient lives and needs may also arise in situations when patients demand interventions that are not considered medically necessary but aim to change specific body parts. One example of this is female genital cosmetic surgeries (Braun 2005, 2009, 2010), where patients, sometimes motivated by a wish for increased quality of life, express a will for genital surgery according to sociocultural norms about the function and purpose of female genitals. However, in contrast to normalizing surgery for VSD conditions, vaginal cosmetic surgery is typically not governed as strongly by the logic of normalization. It is, for instance, not positioned as a “quality of life” improving intervention and is not covered by health care insurance. This incongruence highlights, on the one hand, the way in which certain norms – in this case, those about vaginal length – become medically sanctioned so that subsequent interventions become justified, while other norms – such as those about vaginal appearance – are not. On the other hand, it highlights how altered neoliberalist discourses and altered structures of health care (in western/northern hemisphere contexts) may contribute to changes in demands for medical intervention. While patients traditionally have been positioned as tending to prefer “conservative and less invasive treatment strategies” (DiMatteo and Lepper 1998, p. 77) they may increasingly – in light of a rise in information access and the positioning of patients as health care consumers rather than health care receivers – define their own care needs and demand more invasive care than their doctors find necessary. Finally, differences in the patient’s and the physician’s rationales and power with respect to defining normality are also central to the second misfit. While physicians are generally more knowledgeable than the average patient when it comes to, for example, a fracture, and may be an expert on the general features of chronic disease, a patient living with a condition “soon becomes the foremost expert on her disease and its specific manifestations” (Holm 1993, p. 109). These differences in knowledge are not a problem as such but the problem is rather, as argued by Segal (2005: 142), how medical expertise historically has expressed itself as paternalistic and still is seen to be paternalistic. If this is the case, or if physicians are wrong in their prescription of treatment, “the patient’s departures from the prescribed treatment may represent a fully rational decision and be the best compromise bet” (Holm 1993, p. 108). The noncompliant patient may even become the “hero” who retrospectively reveals that specific medical advice was outright wrong or not that good after all (Segal 2005, p. 151), or who challenges persistent derogatory norms. One example of this is the critique of early “normalizing” interventions and secrecy in the case of VSD, which has specifically questioned the very need for “normal” genital appearance (Wiesemann et al. 2010). As a woman in a study by Guntram underscored, physicians might not even “consider that not everyone needs a vagina, for instance, if you are homosexual.” Furthermore, the same woman added, “some women might not even feel anything from vaginal intercourse after having had surgery. ‘If so, what’s the purpose of creating a vagina?’ [. . .] it ‘might not even matter’” (Guntram 2013, p. 115). By questioning the rationale and purpose of treatment, such questioning challenges the very logic of normalization that underpinned previous
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treatment paradigms for VSD (Fausto-Sterling 2000; Kessler 1998; Wiesemann et al. 2010). To sum up, the misfit between dominant logics of normalization and the lived experiences of “atypical” embodiment highlights ways in which patients become difficult by questioning the overall aim and legitimacy of medicine. Hence, acts of noncompliance may not only express whether patients are convinced about the treatment’s physical deliverables, such as “normal” breasts, an “ideal” bite, or an “average” sized vagina (Segal 2005, p. 135). They may also demonstrate ways of crafting “more bearable ways of being” and “shaping a good life,” although the chosen ways may not always make sense to others (Mol 2008; Gouge 2018).
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Misfit Three: Logics of Patient Activation and Being Active in the Wrong Way
Previously in this chapter, it was mentioned that a compliance mandate commands patients to “express their agency in line with official goals” (Petersen 2003, p. 195). This becomes explicit in the many public policies worldwide that call for patients to be active, engaged, and involved: patients are increasingly invited and expected to be active participants in their own personal care, as well as in the development and evaluation of care services (Sinding et al. 2011). As described earlier, health care policies signal how patients are valued; they contain normative assumptions about how patients should be and act, thereby also shaping the ways in which patients are clinically “evaluated.” In this section, misfit three is explored, focusing on some of the specifics of how patients are expected to be active, and how patients can become difficult if they are active in the wrong ways. Normative assumptions in clinical evaluations of patients are apparent in research on care professionals in training. Learning a profession does not only mean building up certain expertise, it also includes learning about its normative dimensions and discourses. “Newcomers” usually have a unique ability to identify and articulate this kind of tacit knowledge, which may be hidden for the more experienced professional (Egan and Jaye 2009; Wenger 1998). Research on what is called the hidden curriculum of medical education has shown that physicians-in-training learn about the subtle and less subtle ways in which their senior peers evaluate patients. In a study of medical students from the United States, Sointu (2017, p. 65) concludes that the study participants expressed that “bad patients have wrong priorities, little knowledge and are difficult to deal with, and that good patients are active, compliant and knowledgeable.” Sointu’s analysis points in the same direction as the abovementioned policy ideas, in which “good” patients are compliant, and that being compliant nowadays entails being active and involved in the shaping of medical instructions or treatment plans. Hence, compliance in current medical practice is something other than just doing what the doctor tells you to do. Rather, it demands that patients are knowledgeable about their health status and medical history, and actively use it in their care priorities and decisions.
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What counts as active is defined by others (Gouge 2018), but not just by human others. Many have demonstrated how specific kinds of “being active” are provoked by the way practices are organized, e.g., in how through medical technology, certain tasks are delegated from care professionals to patients, who thereby are expected to “become active.” Winthereik and Langstrup (2010) studied how patients’ access to a new kind of online medical record was planned to increase pregnant women’s possibilities for self-care. This process, however, turned out to be a lot more complicated when the women started to check and question the contents of their records, causing all sorts of challenges for the involved midwives (Winthereik and Langstrup 2010). In a similar fashion, many behaviors characterized as difficult or bad in Sointu’s work are, one could argue, far from being passive, rather they are active in wrong ways. Patients who question medical expertise or choose to deviate from treatment plans are clearly active, even active in their own care, but in ways that do not fit the logic of patient activation. However, knowing the right way to be active in a specific clinical context is far from easy, even if patients aim to be good, active, and complying patients. For example, patients are expected to have basic knowledge about their own health and medical history, yet there are boundaries regarding to what extent patients can use this knowledge to question expertise, and the consequences of crossing these boundaries varies. Such fine lines also come to the forefront in studies of the increased responsibility of patients to actively speak up if they experience dissatisfaction, witness untoward care encounters, or have safety concerns. Despite this increased responsibility to do so, speaking up about concerns may still challenge clinical norms (McCreaddie and Wiggins 2009; Sointu 2017; Coyle and Williams 1999), forcing patients to balance their expectations to speak up against the risk of being ill-treated or missing out on essential care (Brüggemann et al. 2019; Brüggemann 2017; Entwistle et al. 2010). Studying patients’ views on their involvement in preventing clinical errors, Doherty and Stavropoulou state that “[r]ather than perceiving active involvement in safety as protecting themselves from error, patients express concerns about being labelled ‘difficult’ and clinicians responding negatively or defensively to being questioned; consequently patients may be actively protecting their personal safety by assuming a relatively passive role” (2012, p. 261, original emphasis). As mentioned earlier, health care policies and local clinical guidelines affect the ways in which patients are clinically evaluated, but it is also obvious that societal norms and ideologies shape locally specific difficult patients. This includes social hierarchies, professionals’ working conditions and status, and specific expectations around patient behavior. Exactly what kind of patient activity is expected or allowed is always contextual, and so are the consequences of being active in the wrong ways. In a study on obstetrical violence in South African maternity wards, noncompliance is one of the tropes in midwives’ reasoning to explain and even legitimize the use of physical and verbal violence toward patients (Jewkes et al. 1998). The kind of pressure to exert control over patients’ behavior cannot be understood without reference to care professionals’ local working conditions and status. For one of the townships included in their study, the researchers related this controlling mode to the combination of the unpredictability of childbirth and being far from the nearest
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hospital. Patients were, therefore, expected and coerced to take responsibility and follow medical instructions exactly; a tricky balance for patients, especially given that patients reported that they received limited information from the staff. Failure to walk this thin line, for example, by resisting the nurses’ coercive regime, was seen to catalyze patients’ vulnerability to ill-treatment. Patient resistance was positioned as something that undermined nurses’ status as being part of a middle-class profession; a sensitive issue in post-apartheid nursing in South Africa, especially for black nurses. Skills in finding the “right” balances and boundaries, i.e., finding the right way of being active and compliant, are significant in relation to how patients are positioned in clinical practice. These skills are in part captured by what Shim (2010) calls “cultural health capital”: a repertoire of skills and resources that enable patients to optimize their engagement with care providers. Shim (2010, p. 11) argues that cultural health capital provides a link between societal inequalities and health care outcomes, mediated through clinical encounters: “[r]ace, class, and other markers of social status are seen as replicated in, or as refracted by, the specific forms and effects of cultural health capital.” The theory of cultural health capital, therefore, links social marginalization with susceptibility to being positioned as difficult patients (Sointu 2017). Interestingly, it may not only be less resource-rich patients or those who struggle to mobilize their health capital who may have difficulties being active in the right way. Resource-rich patients may use their health capital and act in ways that give them access to the care they deem necessary, sometimes at the price of being seen as difficult patients. This may be particularly common among previously mentioned diseases about which there is limited biomedical knowledge to guide diagnosis and treatments, and where patients face a greater risk of not being taken seriously (Joyce and Jeske 2019). Carolyn Thomas, who started Heart Sisters, a blog on women’s heart health, captures the double tragedy of such care encounters: “Patients like me also walk a razor-sharp tightrope. We risk being labelled as ‘difficult’ if we persist, yet we risk being dead if we don’t” (https://myheartsisters.org/2012/12/09/labelleda-difficult-patient/).
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Conclusion and Future Direction
This chapter has shown how particular kinds of “difficult” patients come into being in “misfits” between dominant logics in medicine and individual patient lives and needs. In doing so, the chapter has demonstrated how the difficult patient is constructed as someone who does not align with medicine’s standardizations and simplifications, nor with its overarching goals or its ideas about participation and involvement. In the medical literature, difficult patients are often discussed in terms of psychological or relational struggles. Such reflections and analyses are highly relevant for care professionals (and patients) when coping with the complexities of health care systems and encounters within them. However, the perspectives presented in this
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chapter also show that the “difficult patient” can present itself as an opportunity to reflect on the logics and norms that shape local care practices. The difficult patient could be of analytical value in social science research, as well as a tool to use in collective reflections at the clinic level or in public health settings. This invites reflection on an alternative logic in which, following Gouge (2018), care is understood as both “situated, embodied, and rhetorical; materially, discursively, and temporally emergent” (p. 129), and in which divergent acts are seen as important feedback for the improvement of care. Based on the misfits discussed in this chapter, such an alternative logic would not only incorporate divergent acts, but also acknowledge divergency and diversity in terms of bodies, identities, and social ways of being. Given that medicine, as an institution, has the power to define what counts as disease, who is worth treatment, and who falls outside the norm, the positioning of patients as difficult is not innocent. Such positions permeate care encounters, local clinical routines, national guidelines, and global public health. This conclusion underlines the role of care professionals’ conditions and opportunities in applying situated judgment and local knowledge (Knaapen 2014), in order to enable better “fits.” Applying situated judgment and enabling “fits” requires that care professionals have the necessary time, space, and trust; they need space to “tinker” with available social and material resources in care practices in order to adapt to patient diversity. However, rising global health care needs and changing demographics put pressure on care budgets and, consequently, this space. Following the argumentation in this chapter, such developments risk producing more difficult patients, thereby adding additional pressure to care professionals’ work situations and ultimately jeopardizing patients’ (equal) access to good care.
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Religion and Health Elias Mpofu
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Religion and Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Religion and Culture in Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Religion and Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Implications for Public Health Promotion with Religion Followers . . . . . . . . . . . . . . . . . . . . . . . 4.1 Apostolic Faith Sexual and Reproductive Health Norms . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Church Influences on Sexual Health Concepts Among Pentecostal Botswana Teenagers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Meaning in Life of Ghanaian Young Adults . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter supports the view that religious following is a resource for the health and well-being of followers, although outcomes would vary by priority religious functions and moral codes of their faith tradition. In their diversities, religious teachings may have different moral-ethical codes of emphasis that oblige followers or allow them discretion in their health practices. The window of opportunity for followers’ discretionary health well-being practices may depend on the functions of religion emphasized by a faith community and associated moralethical codes. When followers perceive a confluence in religious belief supported
E. Mpofu (*) Rehabilitation and Health Services, University of North Texas, Denton, TX, USA School of Health Sciences, University of Sydney, Sydney, NSW, Australia School of Human and Community Development, University of the Witwatersrand, Johannesburg, South Africa e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_136
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by moral-ethical codes and public health programs, their adherence to public health guidelines may be strengthened. However, when followers perceive discordance between religious beliefs supported by moral-ethical codes and public health guidelines, they may experience distress in navigating these contradictions. Future research needs to explore how religious culture followers perceive and enact health well-being behaviors in narrow and wide discretion religions across faith traditions. Keywords
Religion following · Health and well-being · Moral codes · Religious functions · Religious cultures
1
Introduction
Religion is an overarching influence on the sustenance and promotion of public health (Idler 2014), understanding the high diversity in how followers believe to be guided in their health actions by their religiosity. Religiosity as adherence to institutionalized practices for achieving a goal for service of the sacred is different from spirituality, which refers to seeking something sacred, but without adherence to institutionalized practices (Park 2005). A sense of spirituality may include seeking experiences that transcend or move beyond everyday concerns with or without religious affiliation. Religion following preconditions of adherent’s beliefs about what counts for health needs and the means to meet those needs. Sustainable health maintenance and promotion within communities require an understanding of their diversity regarding health beliefs and practices, some of which may be religionbased. Until recent years, religion and health have been studied separately, overlooking the importance of religion as a context for health behavior (Hordern 2016; Hulsether 2005). Yet, religious following influences what people do to self-manage their health and well-being so that followers’ behavior is health behavior directly or indirectly (Idler 2014). Health behaviors are based on the “prevalent beliefs in the community regarding physical, mental and social well-being and the causation of disease and disability” (World Health Organization 1978, p. 41), and which religious beliefs influence people’s coping with debilitating or chronic illness (Pargament et al. 2004) and acceptance or uptake of health interventions (Hordern 2016; Idler 2014). At the same time, increasingly, societies are diversifying in holding different religious views, living different lifestyles, and experiencing different levels of health and well-being through their religious involvement. Disregarding what religious culture followers consider credible or trustworthy, health practices by public health programs would compromise adoption by religious followers. The diversities in religion that influence the health and well-being of followers is the subject of this chapter.
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Religion and Health
A question of interest has been whether the religious following is “healthy” or “unhealthy,” and religious affiliation has been linked to positive or negative health outcomes. For instance, the research evidence is strong that people with religious affiliation across faith traditions (Christians, Buddhists, Jews, Muslims) have higher vegetable and fruit consumption, and are less likely to drink and smoke, compared to the general community (Chouraqui et al. 2021; Holt et al. 2014; Islam et al. 2003; Sawari et al. 2015). Further evidence for the health-promoting influences of religion includes that: 1. Coping with debilitating illness was enhanced among those with religious affiliation (Koenig and Al Shohaib 2014) 2. Mental health was higher among clergy and institutional church members, due to their affiliation and participation in religious practices (Pargament et al. 2004) 3. Religion can be therapeutic in recovery from a debilitating illness, and addressing religious beliefs is important to “psychotherapy. . .with religious clients” (Merkur 2005, p. 171; see also Hordern 2016) 4. Mammography uptake was higher among women with regular church attendance, contrasted with those who did not attend (Benjamins 2006) In these instances, the religious following may be a buffer against ill health. Religion following may also facilitate coping with normal stresses of life and productive engagement with the community. However, religious affiliation may be unhealthy when religious beliefs proscribe the use of public health services (Garcia and Yap 2021), including denial of lifesaving maternal services (Ha et al. 2014), denial of lifesaving vaccines (Garcia and Yap 2021; Marti et al. 2017), and denial of lifesaving blood and organ donation (Oliver et al. 2011). Moreover, with declines in religious commitment, “religious involvement may become detrimental to well-being, and individuals may be better off seeking new affiliations” (Mochon et al. 2011, p. 1). The discourse on religion and health has tended to overlook the significance of geography and secular influences in explaining the health outcomes of followers (Mpofu 2016). Emerging evidence suggests a robust association between religious following and higher life expectancy across nations, regardless of economic development (Hidajat et al. 2013). In India, life expectancy was highest among Christians (68.1 years), followed by Moslems (66 years), and Hindus (65 years) (Kumari and Mohanty 2020). And the religious following was associated with more disability-free years in Taiwan’s Taoist religious culture (Hidajat et al. 2013). On the other hand, some religious cultures have a long and sordid history of association with the perpetration of violence, both physical and symbolic (Basedau et al. 2016). As an example, religion-driven physical violence has cost millions of lives in some parts of the world in “holy wars,” cult mass suicides, and terrorist
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suicide attacks (Basedau et al. 2016; Whitehouse 2018). The perennial wars in the Middle East have underlying religious motivations, as have religious conversion wars over millennia. Symbolic religion violence is when religious meanings, activities, and actions serve to deprive, threaten, and intimidate followers and/or non-followers, imposing a religious culture or cult worldview harmful to health and well-being. The denial to women and children of life choices framed on religious teaching is an instance of religious symbolic violence with long-term implications for population health (Mpofu et al. 2012). Globalization and secular education do not appear to be diminishing the capacity of religions to create practices for in-groups to use as rallying points against out-groups (Munson 2021), thus diminishing opportunities for cross-learning for the good health of populations.
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Religion and Culture in Health
Culture is commonly understood as a people’s way of life, including the norms, values, beliefs, and practices they identify with their collective being. It is defined “by the ways that people talk about their [life] concerns, and by the way they use power to promote their concerns” in the unequal “play-field [of life], whether or not we wish it could be” (Hulsether 2005, p. 501). Cultures are in continual evolution, while maintaining some continuities, even in the face of global cultural trends. Within population segments, people will identify variously with a culture they believe they share with others, maintaining their sense of the self within the collective. Culture is a product of interactions, a process by which people make sense of what they do, as well as a tool for achieving the means and ends people desire.
3.1
Religion and Culture
A question for debate is whether religion is a culture or a part of the culture (Beyers 2017; Hulsether 2005). This is an important question for understanding the diversity in religious influences on people’s lives and well-being.
3.1.1 Religion Functions Religion serves six functions that would depend on the culture in which it is practiced: instrumental, regulatory, heuristic, interactional, representational, and personal. An instrumental function of religion is the social affiliation for religious practices with fellow followers of a belief in a higher authority deserving reverence (Graham and Haidt 2010). Social affiliations influence health norms, providing opportunities for exploring, learning, and adopting those of fellow members. Religious affiliation’s instrumental functions include providing sociocultural capital
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(e.g., participation in a sacred music program; access to respected elders) and social networking (dense networks of religion adherents; contact with respected faith belief leaders). Religion’s regulatory functions are achieved through the rules, roles, and values that bind a community of followers to obligatory practices that define the religious community as a moral community (Brenner 2001). Role orientation is about understanding how to carry out obligatory tasks for a religion-endorsed social role (Brenner 2001). Value orientation refers to the acceptance of underlying beliefs behind the workings of a social system, such as a religious institution. Religion’s heuristic function is for self and collective group discovery of the divine, including meanings, processes, and ends of religion following. The interactional function of religion provides a means of communication and sharing among followers of their divine heritage and aspirations, sharing sacred texts, symbols, and paraphernalia of the religion for a shared understanding. The representation function of religion is to distinguish matters of faith, and those of the “mundane” secular world. Religion also serves the personal functions associated with a faith identity and practices of the religious institution, for meaning and purpose in life. At the personal level, religious affiliation influences coping skills (e.g., prayer, confession, forgiveness, and religious funeral rites). The salience of religious functions may vary between and within religious institutional types, with the more homogenizing or controlling religions allowing for less heuristic or personal functions for followers (Scheitle and Adamczyk 2010). On the one hand, religions are a part of culture alongside other cultural practices, as in the performing arts, trade, and industry. With religion a part of the culture, “the religious parts of culture are significantly smaller than the culture at large, or more nearly coextensive with it- . . .with more or less religious parts of culture” (Hulsether 2005, p. 500). If religion is a part of the culture, there may be no expectation that other parts of the general culture necessarily subscribe to a sacred end. In societies in which religion is a part of the culture, in particular, secular or non-religion-based knowledge would be a requirement for participation at some level, in the sense that few religious communities would be self-sufficient in all their needs: physical, material, interpersonal, and spiritual.
3.1.2 Secularization The evidence to suggest the decline in religious institution affiliation identity in Western societies has raised the question as to whether religious following is in decline due to secularization (Hughes 2017; Pew Research Center 2019). As an example, The Pew Research Center reported a 9% increase in American adults identified as nonreligious in 2019 (26% religion “nones”) as compared to 17% in 2009 (see Fig. 1). At the same time, the percentage of American adults who identified as Christian declined by 12%, from 77% in 2009 to 65% in 2009, while the percentage of those who identified as other religions marginally increased from 5% to 6%. Religion disaffiliation increased by 13% in the period 2007–2019, portending a substantial increase of nonreligious “nones” in the decade 2020–2030. The trending increase in US nonreligious respondents mirrors that in
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Fig. 1 Trends in religion affiliation in the USA. (Adapted with permission from Pew Research Center, Oct. 17, 2019, “In U.S., Decline of Christianity Continues at Rapid Pace, p. 3)
other Western countries (Inglehart 2020). Material affluence in Western countries with religion as part of the culture was associated with lower religious identity compared to countries in which religion and culture overlap substantially, while subjective happiness was similar (Libby et al. 2022). The declines in religious affiliation in Western societies contrast with the global trends projecting a 28% increase (2.3 billion), from 5.8 billion in 2010 to 8.1 billion in 2050, and a marginal 8% in non-religion (religion “nones”) by only 0.1 billion, from 1.13 billion in 2010 to 1.23 billion in 2050 (Pew Research Center 2015). The global religion prevalence projection strongly suggests that religion will continue to be important to cultures, and to population health, around the world. Religion may pervade all aspects of the general culture, as would be the case with cultures in which religion guides the lives of followers their entire lives. In this case, culture and religion overlap for all practical purposes. This would be different for people of religion as a part of the culture, learning the ways of living the religion in their particular life situations as needed. In the latter case, religion would be a part of the general culture, larger than the religion following itself. According to Foucault, “a culture cannot understand itself without first understanding its implicit connection and development within the constructs of religious belief and practice” (Carrette 1999, p. 33).
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Regardless of religious organization type, followers engage in religion-supported social mediation processes enculturating them implicitly or explicitly to religious knowledge and values premised on a moral-ethical code. The diversities within and between religious communities necessitate practices to implement objects, activities, and actions that the followers believe to define their specific religious institution practices.
3.1.3 Cross-Cultural Perspectives There has been less attention paid to “cross-cultural findings in world religions” as compared to the “history of religions” (Merkur 2005, p. 165). Furthermore, the scholarship is more extensive on religions of wide dispersion, which are those with larger global, geographical dissemination (also called world religions: Buddhism, Christianity, Confucianism, Judaism, Hinduism, Islam) than on religions of narrow dispersion or regional to local community religions (e.g., indigenous people religions). Religions of wide dispersion have textual cannons for their propagation. By contrast, indigenous religions tend to rely on oral rather than textual teachings, which constrains their dissemination within and between cultural regions. Not surprisingly, the cross-cultural research on religion and population health is largely based on religions of dispersion rather than indigenous religions, to the neglect of the contributions of indigenous religions to followers’ health and well-being (Oppong et al. 2020). However, this bias may be changing with the recognition by the World Health Organization of indigenous health systems (WHO 2010). The health understandings of indigenous communities (or first nations) have historically been marginalized since the colonial conquest period, mostly by Western nations. There are approximately 370 million individuals in the indigenous peoples’ habitats of Africa, Asia, Arctic Regions, Central America, North America, the Pacific Region, the Russian Federation, South America, and the Caribbean (United Nations 2016). This census may be an underestimate, as many people who selfidentify as indigenous may not live in the designated historical indigenous peoples’ habitats. Indigenous religions continue to propagate alongside the religions of wide dispersion, despite the neo-colonial history of the world religions’ efforts to undermine and subvert indigenous religions (Friedenthal 2014). As an example, indigenous African religions in their diversity believe in Chukwu/Mwari (God, the Supreme Being), and those that live under Him in the spirit world as Ndichies/ Vadzimu (ancestors), with the benevolent God endowing those who conducted themselves with moral uprightness with communal immortality (Ikenga-Metuh 1982). It is not unusual for followers of indigenous culture religions to also be followers of the world religions of wide dispersion, adapting to the demands of the religious traditions they identify with or aspire to. These dual affiliations add to their social capital for health and well-being overall. Similarly, it is not unusual for followers of the religions of wide dissemination to follow several of them in their lifetime, through old or emerging social affiliations (Friedenthal 2014; Kraft 2017).
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Nonetheless, people who follow both indigenous religion and one of the religions of wide dispersion also risk poorer health and well-being as a result of negotiating the discordant beliefs and practices between the religions, as well as historical mutual religious dis-valuations (Kraft 2017). If they adhere only to the indigenous religion, they may miss the social capital of the religions of wide dispersion in their neighborhood. If they abandon their traditional religious roots, they may also be taken advantage of by charlatan religious institutions seeking to exploit and abuse the vulnerable. With the trans-global dissemination of religions of wide dispersion with roots in Western, Middle-eastern, and Southeast Asian cultures (e.g., Buddhism, Christianity, Confucianism, Judaism, Hinduism, Islam), the closeness of the relation between religion and culture varies by geographical prevalence, driven by the parent religious cultures (Dwyer 2016). As an example, in Western culture, religion is a part of the culture, and not necessarily a defining attribute. In Middle-eastern and Southeast Asian cultures, religion may be the parent to lived culture, being a primary means around which people organize their lives. Similarly, the religions of indigenous populations around the world may not differentiate between religion and culture in community living, although they may have symbols and rites for the more religious aspects of their lives, like with the world’s major religions. Indigenous people’s religions have a strong metaphysical orientation in which mind, body, soul, fauna, and flora have a symbiotic relation requiring a balance of these elements for the health of all in all activities and actions (Oppong et al. 2020). In their diversity, they tend to subscribe to a moral-ethical code in which the natural world and the human world are inseparable in thought or actions (Oppong et al. 2020).
3.1.4 Moral-Ethical Codes Three broad moral-ethical orientations with health and well-being implications have been identified: Ethic of Autonomy, Ethic of Community, and Ethic of Divinity (Shweder et al. 2003). The Ethic of Autonomy orientation gives greater weight to personal liberty and independence while safeguarding the rights of others. It is aligned with Western individualistic culture in which religious beliefs are a specific area of life, having little impact on interpersonal or societal issues. The Ethics of Community by contrast has a collectivistic cultural orientation, prioritizing the importance of group norms like loyalty, honor, conformity, and chastity, as with Asian and African cultures, for example. Finally, the Ethic of Divinity has a strong metaphysical orientation in which humans, plants, and animals contain divine elements to be protected by special rites and customs. Religious cultures with an Ethic of Divinity orientation consider spirituality to permeate all spheres of life, and to explain the health of populations (Shweder et al. 2003). As an example, Asian, African, Australasian, South American, and North American indigenous culture communities subscribe to the Ethic of Community and Ethics of Divinity orientations, in various degrees (Shweder et al. 2003). As examples out of Africa, naming traditions of the Igbo and Yoruba of Nigeria follow the ino-uwa (“re-birth after death” or “return to life”) Ethic of Community and Ethic of Divinity premised on the belief that the physically dead are living and participate in
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the lives of their communities of origin and the children at birth may be named after their ancestral heritage in reverence (also referred to as “reincarnation” in some Asian cultures (Manus 1986)). The Aboriginal and Torres Strait Islander people in Australia and Papua New Guineans have a high regard for the Ethic of Community and Ethic of Divinity in considering well-being to be determined by lifestyle and relationship with others and the community with a balance among the physical, spiritual, social, and environmental aspects of being (Boulton-Lewis et al. 2001). Sectoral cult religions of Western culture would also prioritize the Ethic of Community and Ethics of Divinity orientations over the Ethic of Autonomy (Scheitle and Adamczyk 2010). Regardless of the diversities in moral-ethical orientations, religious following comes with obligations, some more binding than others. We refer to religions with strong Ethic of Community and Ethics of Divinity orientations as “religious culture” (Hulsether 2005, p. 501; see also Shweder et al. 2003, p. 1). Religious cultures are different from religion as part of the culture in that they perceive “divinity as immanent in all things” so that “the sacred . . .and natural. . . are the same things” and “not different orders of reality” (Shweder et al. 2003, p. 147). Religion and life practices are consonant in having the deification of a higher spiritual force as the ultimate goal of being human, and commitment to activities pursuant to supplication to a higher authority at every level: person, collective, and society. All actions, be they ritualistic, domestic, work community/civic, or interpersonal, aim to realize the divine order of things, believing divinity will reveal itself in all things animate and inanimate. In religious cultures, people have personal and collective responsibility for the well-being of everyone, and everything is premised on the particular divine realities as they play out in their lives, inviting them to action. This responsibility comes with moral obligations to self and fellow followers, informed by religious knowledge. Morality and moral behavior are in and of themselves not religious precepts (Skitka et al. 2005). Concerns and actions for correcting “wrongs” and advancing “rights” have a long history, of guiding societal changes (Appiah 2011). Nonreligious people adhere to the moral codes of their secular communities, together with religious believers (Norenzayan 2014; Pospíšil and Macháčková 2021). Furthermore, in their practice of morality, religious followers may be parochial in favoring “ingroup” followers, from a sense of belongingness (Huang and Han 2014; Vaughn et al. 2018), and perhaps less so with religious outsiders, who may be nonreligious or of a different religion (Shariff 2015; Vaughn et al. 2018). In a laboratory study, Chinese Christians and Atheists were more empathic to the pain of the same (non)religion others (Huang and Han 2014). With religion following, believers may explain their behaviors to be guided by religious knowledge coreteachings of self-control, and the nonreligious may attribute their self-control behaviors to rationality, to the same effect (Norenzayan 2014). Thus, morality and moral behavior would have implications for health norms by religious precept, even though also possible with no religious overtones, as in secular norms. Importantly, none of the world’s religions are monolithic in teachings or doctrinal emphasis, even with similar moral-ethic orientations. Religious organizations within
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faith traditions have different followers by cult or denomination, for example. Moreover, the ways religious institutions seek to achieve moral-ethic values change over time, adapting to the times in preserving their identities. Followers also may utilize religion to seek non-sacred goals such as good health or satisfying personal relationships, which they may imbue with religious meaning (Mpofu 2018). In summary, “religions are . . .complex, and internally diverse as other cultural forms” (Hulsether 2005, p. 499). They share a follower identity defined by a set of practices based on supplication to a deity (Paloutzian and Park 2014). Ultimately, understanding the relations between religion, culture, and health includes moralethic orientations and the underlying belief that religious culture is valid for guiding health choices. Follower religious practices become important conduits for how they appropriate or achieve health and well-being, as in the case with the examples from Botswana, Zimbabwe, and Ghana later in this chapter.
4
Implications for Public Health Promotion with Religion Followers
Religion followers perceive to be part of health activity systems that influence their health and well-being (Koenig et al. 2012; VanderWeele 2017). However, religious following may often not predict health directly, but rather indirectly through religious practices (e.g., attendance of congregate meetings: Smith 2003), readings, recitations, contemplating the scriptures, charity, persona austerities, and purity (Shweder et al. 2003). Those of religious practices may have superior health (Pargament et al. 2004), although researchers are beginning to closely explore the health outcomes of agnostics, by comparison (Galen 2018). Religious involvement may influence health outcomes through healthy lifestyles and social support from the religious institution (Holt et al. 2014). It does so at three levels: behavioral (as in practices of attending and participating), subjective (as in member identity and commitment to teachings), and functional (as in shared social capital). Followers may hold themselves to self-discipline, patience, and kindness, attributes associated with spiritual, psychic, and mental health well-being (Koenig et al. 2012; Sadati 2018). These same self-behaviors are associated with the public good, ethics, and justice (Raquib et al. 2020). Religious involvement explains follower interplay between religious identity (knowledge and beliefs of a faith practice), relationship factors (commitment to the faith community), and health beliefs (which explain one’s own health and that of others). Behaviors tied to the religious following are largely changeable under the impetus of evolving practices that mark a religious faith or sector for its own learning and adapting to changes in the practice environment, which may be driven by societal secularization or value systems not necessarily justified by or opposed to religious teachings. The following case studies on sexual and reproductive health service participation by church followers in Zimbabwe (Mpofu et al. 2012), Botswana (Mpofu 2016; Mpofu et al. 2012), and Ghana (Wilson et al. 2022) are illustrative.
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Apostolic Faith Sexual and Reproductive Health Norms
Christianity is widely dispersed in community social service organizations of sub-Saharan Africa (Friedenthal 2014). Despite this social asset, churches have been underutilized in treatment programs, both in working to reduce obstacles to treatment and in actively supporting treatment access and adherence. The underutilization of church organizations as conduits for the dissemination of public health interventions is in part due to breaks in linkages between prevention, diagnosis, uptake of treatment care, and treatment adherence, washing out any gains from national health strategies (Williams et al. 2012). The lack of lock-step linkages between the church and public health knowledge environments across the continuum of care severely compromises the quality of care, although community-level structural interventions have the potential to address such linkage of care attrition (Church et al. 2017). In a qualitative study of an apostolic faith organization in Zimbabwe, Mpofu et al. (2012) sought to explore the church’s institutional influences on the health and wellbeing of the membership. Informants were a sample of 12 male and 11 female church members aged 22–85 years, identified using both purposive sampling and snowball techniques. They responded to open-ended questions about church perspectives on HIV and AIDS (knowledge, prevention, and care of the infected/affected), sexual health, and the use of modern public health services. The researchers explored possible bridges for public health initiatives with the faith community. Data were collected using focus group discussions and analyzed using an interpretive qualitative research approach to map cultural-structural and also personal influences on health norms among the church congregate, taking into account gendered perspectives.
4.1.1
Contention Between Apostolic Faith and Public Health Perspectives The apostolic church engaged in an activity to influence all aspects of parishioners’ lives, including enforcement of religious rules on how their congregation dealt with sickness, health, and well-being. For instance, health action regimens by the church typically involve the use of natural minerals with generous doses of prayer. The apostolic church members believed the Holy Spirit (the object of the church activity) not only controls the way the church is run but also very personal and intimate aspects of its members’ lives. Accordingly, the church leaders engaged in actions to regulate the sexuality of the membership. For instance, women’s sexuality (behaviors, desires, reproductive functions, and vanity) was to be kept “in check” whenever possible. The female focus group observed that the church’s teachings on respectful womanhood controlled their personal hygienic practices: for example, a women participant observed: Women are not allowed to breastfeed in the church. . .are encouraged to bath three times a day. . .and not allowed to do any work while menstruating.
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When a woman’s sexuality is apparent (reproductive functions), she is further ostracized. There are certain times when women are asked not to wear the church garments. When a woman is menstruating or when she has given birth, she is not allowed to wear church garments. If she gives birth to a baby boy she has to wait until one month and a week and if it is a girl she has to wait for two months and two weeks. (Female focus group member)
In order to ensure that followers did not transgress a church-endorsed spiritual proscription, its church leadership (which was male) engaged in regulatory actions to audit the spiritual chastity or purity of members. The church leadership promoted the narrative to call upon the Holy Spirit to ensure that all church members were pure. As one member put it: One of the stringent laws in the organization is that on the day of the Sabbath, every member is spiritually examined to see if he or she has taken part in any unfaithful situations . . . [and that being alleged] will be removed from taking part in the Church’s activities. (Male focus group member)
Women seem to have to endure a far more hands-on approach in the implementation of actions on their chastity: “The girls too go for examinations to test whether they are still virgins” (female focus group member). The depth of involvement the church has in its followers’ sexual lives makes it possible that mental health issues among the church members may be exacerbated by this coercive obligatory over-scrutiny. Needs for supportive counseling among the members may not be appropriately attended to. Preventing Sexually Transmitted Infections (STIs) Contradictions leading to negotiated health norms are apparent in activity to prevent STIs. Historically, the apostolic church denied the possibility of STIs among its members. To prevent STIs, the church engages in the following belief-laden actions: The church believes in advocating abstinence. The church encourages sex after marriage. This protects members from sexually transmitted diseases . . . Members are also encouraged to go for tests [from public health centers] for HIV before marriage but most men do not like this. (Female focus group member)
However, male sexual infidelity is likely to be blamed on the woman who may be (mis)perceived as failing to satisfy her man. Women are encouraged to have sexual intercourse with their husband whenever the husband feels. This will make the husband satisfied with his wife and will not get attracted to other women. (Female focus group member)
The men of the apostolic church seemed to agree and to peg the prevention of STIs on the satisfying conjugal relationship:
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Women are encouraged to love their husbands as much as they love themselves, and the closeness of family units will enable them to avoid sexually transmitted diseases, including AIDS. [And] In the face of this epidemic, one of the beliefs of the apostolic church is that no member of the church is allowed to use a condom, as this is thought to encourage promiscuity. (Male focus group member)
Although the women of the apostolic church believed they should heed the directives of the church, they express worry about how the church addresses their sexual health. The women feel there is a lot of infidelity among the men. (Female focus group member)
Indeed, cluster sexual networks that allow older males considerable sexual permissiveness within the church have been documented among sister apostolic faith churches in the same community (Nenge 2013). A sexual health activity valued by the church is sanctity of sexual intercourse for married couples and its procreative purpose. For this reason, sexual health activities, such as use of contraceptives, are discouraged: The church does not allow the use of family planning method from the hospitals. The church believes that condoms too should not be used. (Female focus group member)
Nonetheless, some women apostolic faith members privately used contraceptives accessed from public health centers (Mavunganidze 2008). Sexual Health Information The church knowledge environment placed restrictions on access to information on HIV and AIDS (or other STIs) from the public health system. There was a perception that such knowledge is irrelevant to the members (and therefore actively discouraged). For instance, to learn about sexual health, the women of the apostolic church sought answers from one another. Church members discuss and advise each other during their gathering on how to prevent sexually transmitted diseases. (Female focus group member) [And] No outside members are ever invited to teach apostolic members subjects such as AIDSrelated diseases, but teachers who are members of the apostolic church do teach other members about these diseases, with the hopes that with these teachings no member will participate in promiscuity and prostitution. (Male focus group member)
According to the church, STIs are brought on by sin and ungodliness, and followers of the apostolic church’s knowledge values are protected. The church first heard about HIV/AIDS in 1992 [about 6 years after early cases were detected in Zimbabwe]. They thought it was one of the diseases mentioned in the Bible
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that there shall be incurable diseases. Therefore, people were not worried about HIV. There are no cases in the church on those who are HIV positive. (Female focus group member)
The prevalence of STIs does appear to be lower among apostolic faith members, for reasons likely to do with their self-contained sexual networks (Mavunganidze 2008). Nonetheless, even without accepting teaching about STIs, the church acknowledges the possibility of STIs among its members. For instance, the men reported discussing the fate of a member found to have an STI (which is evidence that STIs do occur among the congregates). Church members may also lack objective knowledge to detect an STI if they were infected, and would likely not consult a public health center for diagnosis or treatment. Regardless of the apparent lack of awareness of STI risk, the church would impose sanctions on suspected or identified cases: Any member who contracts any of these diseases is expected to discontinue participation in the spiritual undertakings of the church. (Male focus group member)
Because the church knowledge environment disvalued health activity around STIs, the church does not have the policy to deal with the care of those infected with HIV or with AIDS. No special arrangements are available yet for protection for those that are sick from AIDS. (Male focus group member)
The church knowledge environment increased the risk to followers, and to others, from HIV, AIDS, and other STIs. This risk was particularly acute among the male members, who tended to disvalue education about STIs more than did the women. The women informants, while appreciating the faith-based norms about STIs, were willing to settle for negotiated norms allowing for education about STIs. The church would like to have some people who will come and teach them about HIV/AIDS but we’re not sure whether the church leaders would allow that. (Female focus group member)
Women informants of a church organization may prefer instrumental learning to purely moralistic or dogma-oriented teachings (see Lammers et al. 2011). The apostolic church’s structural behavior creates a strong influence on the congregation’s perceptions of self and others and, conceivably, their prospects for health and well-being. Gendered Effects of the Religious Practices Environment The apostolic church promoted strongly gendered narratives across a variety of life domains important for health and well-being. Although males and females reported high consensus on the core teachings of the church regarding its rejection of the use of contraceptives, and strong endorsement of marriage within the church, including wife inheritance (by church males), the women were less favorable toward polygamy and wife
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inheritance. The men were also less favorable to HIV/STI teachings by public health agencies, believing that such teachings should be by or within the church organization. Men are authority figures in the church organization, and their religious ideology and beliefs stifle public health messages they perceive to be the purview of church teachings (such as those to do with the use of condoms), increasing the risk of STIs among members who would benefit from the use of condoms. The women believed the church knowledge environment to strongly regulate their sexual and reproductive behavior and were subject to coerced virginity tests. The power differential in church sects in favor of men and higher expectations for indebtedness and obligation on women compromise health and well-being (see Kawachi and Berkman 2001). Thus, women are potentially at a higher health risk than men from the constrained choices imposed by the church knowledge environment.
4.2
Church Influences on Sexual Health Concepts Among Pentecostal Botswana Teenagers
Mpofu et al. (2012) sought to understand Botswana Pentecostal church youths’ concepts for sexual health using mixed-method approaches. Participants were 245 church youths (67% female, age range 12–23 years), and they responded with free listing to a probing statement asking how they perceived faith beliefs to influence their sexual decisions and to prevent HIV. A portion of the sample (n ¼ 215; females ¼ 73%, with first sex ¼ 37%) rated statements for similarity of meaning and for importance (1 ¼ relatively unimportant; 5 ¼ extremely important). Following multidimensional scaling and hierarchical cluster analysis, findings indicated the church youths perceived church knowledge values the primary influence on their sexual decisions, compared to secular, public health messages. The authors then engaged a subsample of the youths (n ¼ 12) in a member-check focus group discussion to explain the prioritization of faith concepts for sexual health. The youths perceived adherence to church teachings as a source of robust guidance on their sexual decisions, making it more likely that would abstain from sex until marriage or adopt secondary abstinence if with first sex. As examples, the church youths noted that: Church activities such as . . . bible study and fasting have a positive influence on an individual’s [sexual] health behavior in that they deter one from engaging in risky behavior. And: [Church teachings] set standards for sexual purity and self-control. They [church teachings] teach to abstain from sexual intercourse.
They perceived the church as a guide to living through bonding to the collective faith-based knowledge system:
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Personal beliefs [about sexuality] are influenced by religious teachings so there is no difference. Religious teachings give a sense of identity to youth. Church activities such as meetings help youth to be focused on certain goals/visions for instance important . . . as standards setting of holiness.
The church youth perceived secular health norms as unreliable for life guidance. However, sexually active church youth endorsed religious sexuality guidelines less, preferring their own personal health beliefs based on public health teachings. For the Batswana, chastity is as much a faith concept as it is a cultural concept in that their traditional culture places high regard on chastity, which they interpret to mean abstinence for unmarried youths. Personal beliefs set a standard of a way of life for an individual and vary from individual to the individual while religious beliefs are a way of life or standard that a group of people strives to live by. Community teachings may contradict the religious perspective . . .if religious teachings do not promote condom use and abstinence while the community advocate for it there may be a difficulty with people abiding by such community teachings.
The church youths further highlighted the contradictions between church and secular teachings in that they believed the overemphasis by the church institution on sexual abstinence for unmarried youths to ignore the reality that some youth engaged in pre-marital sex, resulting in early, unwanted parenthood. In the words of one of the youths: The world is coming to the church. . .and the church better gets ready to deal with it among the membership.
Consistent with structural influence theory, findings from these illustrative cases suggest that the church knowledge context influences the health beliefs of the membership about sexual and reproductive health, including the prevention of HIV/STIs, and access and utilization of public health services (Church et al. 2017). They also suggest the likelihood of negotiated health norms for church followers in the context of collective learning and/or secular knowledge environment influences. These faith organizations in Zimbabwe and Botswana appear to influence their followers to adopt behavioral norms through social mediation or intersubjective learning (Chiu et al. 2010) of the roles and attitudes entailed by membership, including those related to health norms. From the foregoing structural knowledge analysis, it is apparent that the health norms of the religious followers aimed to express institutional core knowledge values, while their sense of the institutional ethos guided the ways by which followers lived their health. At the same time, the activities and specific actions of individual followers also reflected their perceptions of how they adapted to their evolving life situations. People’s “life structures are in constant motion, changing
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with time and evolving as new life circumstances unfold” (Hutchison 2015, p. 277). Thus, health promotion activities with religious people must be sensitive to the dialectics of person-organization interactions, allowing for negotiated health norms that may be different from those predicated on the organization’s knowledge system alone.
4.3
Meaning in Life of Ghanaian Young Adults
In a study of the role of religiosity commitment and meaning in life (Wilson et al. 2022), 342 Christian Ghanaian young adults (Mean age ¼ 21.08, SD ¼ 3.25) completed a religious commitment inventory, and the meaning in life questionnaire. Results following structural equation modelling indicated that the young Ghanaians’ religious commitment was significantly associated with the presence of meaning in life. On the one hand, the young Ghanaians’ higher experience of meaning with religious belief may be explained by religion providing a larger context for life goals and sense of connectedness to a larger purpose in life. On the other hand, those young Ghanaians self-reporting with higher searching for meaning also had a lower religious commitment. According to Abeyta and Routledge (2018, p. 6), “threats to meaning increase religiosity.” However, searching for meaning is not necessarily related to intrinsic religiosity in western culture. In the Ghanaian religious culture setting where people believe to live religion in everything they do, meaningful living may be explained by other than religious commitment alone. In religious cultures, “search for meaning may represent an uncertainty that is less congruent with deeply held religious beliefs” (Martos et al. 2010, p. 864), and followers with religious culture background may not perceive searching in religion as a destination, believing they are already living religion in their everyday lives. Search for meaning could be adaptive (as in open-minded and exploratory) or dysfunctional (when compulsive), suggesting diametrically different mental health outcomes.
5
Conclusion and Future Direction
Religion and health have only recently been studied in regard to their mutual or counter-influence of reaching other as enacted by the followers. Religion followers may engage in a health practice they believe to give expression to their religiosity. While the health practices religious followers engage in for health and well-being may vary, they would be generally consistent with the health behavioral choices permissible within their religious beliefs. Minimally, followers customize health promotion activities to their religious practices within a faith tradition. Religious culture traditions precondition follower health practice dispositions. They achieve their effect on followers’ health behaviors by prioritizing some religious functions and moral codes over others. Religion cultures for health are also influenced by the global dispersion, which may provide a larger health footprint to religions of wider or global dispersion compared to those of narrower or local dispersion. Thus, health
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promotion with religion followers needs to take into account how the religious following influences health norms and practices both between and within faith traditions. From this review and the case studies with Christian communities of sub-Saharan Africa, it seems that it may not be only “religiousness” that determines follower health norms; rather, a religious follower’s health norms likely arise from personal experiences with and rewards from accessing various health well-being options. Religion followers may engage in health activities they interpret as giving expression to their personal values with religion and secular culture affiliations. Thus, there is a need for research on the varied pathways to the adoption of health practices between and within religious culture orientations. Moreover, teaching and service programs could seek to advance the scholarship of religious health from a resource perspective, while also mindful of constraints and contradictions to health wellbeing with religious culture following.
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Part IV Research Methodologies, Social Sciences, and Global Health
Social Constructionism, Power, and Understanding the Health Needs of Different Groups Engaged in a Shared Reality Matthew Ankers, Yvonne Parry, and Eileen Willis
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Social Construction of Reality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Power . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Social Constructionism, and It Relevance to Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 A Method of Investigating Multiple Groups Engaged with a Shared Reality . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Social Constructionism posits that a person’s everyday reality is socially constructed from their interactions with other people, within a network of social relations. Specifically, “social constructs” represents the meanings individuals have for, or give to, the various objects and processes in their everyday lives. These meanings are learned from other people within their social networks, or are co-constructed with others, through social interactions. Essentially, social constructs provide meaning for everything a person will either think about, or take action toward, hence they represent what is “real” within a person’s world. To help understand and explore these ideas, this chapter begins by introducing “The M. Ankers (*) · Y. Parry College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, Australia e-mail: matthew.ankers@flinders.edu.au; yvonne.parry@flinders.edu.au E. Willis College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, Australia School of Nursing, Midwifery and Social Sciences, Central Queensland University, Norman Gardens, Queensland, Australia e-mail: eileen.willis@flinders.edu.au © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_141
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Social Construction of Reality” by Peter Berger and Thomas Luckmann, which played a significant role in the development of Social Constructionism. A number of key concepts from Berger and Luckmann’s work are discussed, and expanded on to aid understanding of Social Constructionism. These concepts, once established, lead to a discussion of social constructionism and power which, in turn, aids understanding for why the perspective of those with power, can differ to those without. Social Constructionism and its relevance to health are then explored. Finally, this chapter presents a practical method by which Social Constructionism ideas can be used to investigate different groups engaged with a shared reality. Importantly, this method can provide insight into how different groups experience the same shared reality, and help establish the health needs of different groups, especially the needs of those in society, who might otherwise go unheard. Keywords
Social constructionism · Social reality · Relative · Power · Class · Cambodia
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Introduction
Social Constructionism is a widely used, and widely interpreted theory whose central tenet argues that everyday reality is a social construct, created by humans interacting within their social networks (Green and Thorogood 2018; Patton 2015; Best 2008; Gubrium and Holstein 2008; Abercrombie et al. 2006; Crotty 1998; Cheek et al. 1996; Berger and Luckmann 1991). The Social Construction of Reality by Peter Berger and Thomas Luckmann (1991), which drew on theoretical influences such as: • Karl Marx’s views that a person’s consciousness is determined/shaped by their social situation • Alfred Schultz’s interest in the meaning that people give to events in their everyday lives helped evolve ideas related to social constructionism, and increase its use (Best 2008; Weinberg 2008; Cheek et al. 1996). Berger and Luckmann’s work became popular as it presented a way of investigating the “everyday” and “mundane” knowledge that people ascribe to their lives, that was not readily accessible elsewhere (Best 2008; Berger and Luckmann 1991). This chapter presents an introduction to several key ideas from Berger and Luckmann’s “The Social Construction of Reality,” as well as expanding on a number of these concepts by utilizing works from other authors in the field. This is followed by a discussion of social class and power, and how the unique way in which reality is perceived in social constructionism, can be used to explore differences in both. Then, Social Constructionism relevance to health and health care is explored. Finally, this chapter presents a practical method
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by which social constructionism ideas can be used to investigate different groups engaged with a shared reality. This, in turn, can be used to explore different understandings of that same shared reality, which also provides knowledge of different issues affecting various groups, including the health needs of those who might otherwise struggle to be heard.
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The Social Construction of Reality
To help establish an understanding that a person’s everyday reality is a social construct, this chapter will begin with a central premise of Berger and Luckmann’s work. This premise states that for the average person, “the reality of everyday life is taken for granted as reality” as “it is simply there” and rarely requires further confirmation, as our continuous routine engagement with it, acts to constantly re-confirm it (as real) (Berger and Luckmann 1991, p. 37). This re-confirmation of reality is explained by Berger and Luckmann (1991, p. 33) as “...a world that originates in their thoughts and actions, and is maintained as real by these.” The thoughts and actions described in the quote are generally directed toward objects, processes, or phenomena that make up a person’s everyday reality. The knowledge a person has regarding these objects, processes, or phenomena is considered to be “socially constructed” as they are either socially learned from, or co-constructed with, other people, who together form a network of social relations (Patton 2015; Abercrombie et al. 2006; Crotty 1998; Berger and Luckmann 1991). As individuals’ knowledge of objects in social constructionism is dependent on social interactions, this makes that knowledge inherently subjective (Burr 2015; Patton 2015; Lincoln and Guba 2008). An understanding of knowledge, of how what is known, comes to be known and established as true is the philosophical concept of Epistemology (Richardson-Tench and Nicholson 2022; Lincoln and Guba 2008; Abercrombie et al. 2006). Due to the subjective nature of knowledge in Social Constructionism, Patton (2015, p. 122) defines it as “epistemologically subjectivist.” An example of the generation of this type of knowledge can be demonstrated in the scenario of a researcher interviewing a research participant. Specifically, during an interview, the researcher and the research participant become temporary members of each other’s social network, and the questions asked and answered during the social interaction, co-construct new subjective knowledge from the exchange (Patton 2015; Norum 2008; Cheek et al. 1996). Another way of considering the above propositions is that social constructs provide meaning for the totality for which a person will either think about, or take action toward, hence they give substance to a person’s reality. A consequence of this proposition is that when it is reversed, it indicates that reality is socially constructed (Berger and Luckmann 1991). In contrast, most scientific investigations are informed by a positivist orientation, which posit that reality exists regardless of a human conscious being is aware/engaged with it (Lincoln and Guba 2008; Norum 2008). In positivism, “objects” are knowable through rigorous experimentation and observations that ultimately reveal the objects true “universal” nature (Green and
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Thorogood 2018; Burr 2015; Lincoln and Guba 2013; Abercrombie et al. 2006). Objects in a constructionism reality, like a positivist’s reality, theoretically exists outside of human engagement with them, as it is through engagement that meaning is generated, rather than meaning producing engageable objects. Unlike a positivist’s reality, however, in constructionism, it is humans that give subjective meaning to objects in the natural world, rather than meaning waiting to be objectively discovered in the object itself (Patton 2015; Abercrombie et al. 2006). As Crotty (1998, p. 43) notes, objects in the natural world “...maybe pregnant with potential meaning, but actual meaning emerges only when consciousness engages with them.” Further, Crotty (1998) suggests that objects and phenomena may be inherently “meaningless,” but their existence generates meaning when humans engage with them. Crotty (1998) draws on the field of phenomenology and its notion of intentionality to explain the connection between objects in the natural world and human consciousness. Intentionality suggests that the conscious is drawn toward objects (in the natural world), that consciousness is the act of thinking about an object, and in turn objects are shaped (given meaning) by these conscious acts (Dowling 2007; Crotty 1998; Berger and Luckmann 1991). Thus, objects exist prior to conscious engagement, but are only given meaning when the two meet. A consequence of objects existing outside of, and independently from human constructed notions of them, is that human constructs of objects are not absolute (Patton 2015). As Lincoln and Guba (2013) theorize, reality is relative to the observer and the social lens through which they define it, so multiple constructs of the same natural object can exist, which results in competing definitions of that object (Patton 2015; Weinberg 2008). The worldview that the meaning attached to an object is dependent on the observer (and their social lens) has ontological implications. Ontology is the philosophical study on the nature of reality and existence, it asks questions about how reality is perceived, experienced, and defined (RichardsonTench and Nicholson 2022; Denzin and Lincoln 2008; Abercrombie et al. 2006). As implied previously, reality within social constructionism is relative, in that it is dependent on the person (or like group of people), and the social lens through which they observe it (Patton 2015). Put another way, reality exists in the eye of the observer, so if you change the observer, you also change the reality (Burr 2015; Lincoln and Guba 2013; Norum 2008; Crotty 1998). Berger and Luckmann (1991) provide the example of a crime that would hold different realities for the criminal, compared to the criminologist. This fluidity in meaning also extends to objects within a single person’s reality, as the meanings we give to objects, can/will evolve over time, from continued social engagements (expanded on below). Having fluid, non-fixed meaning for objects also implies that those meanings can be challenged (Weinberg 2014). However, despite objects lacking a fixed, confirmable meaning, it does not mean that the knowledge that a person attaches to that object, is not real, nor are the actions that a person associates with that object. This idea is succinctly given in a classic social psychology quote by William and Dorothy Thomas, who stated, “what is perceived as real, is real in its consequences” (Patton 2015; Cuff et al. 1992). In other words, if individuals challenge a person’s socially constructed
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explanation of an object, they are also challenging their accepted version of reality, which may meet with resistance. Another consideration in social constructionism is understanding where the pre-existing meanings that people apply to objects originate from. Berger and Luckmann (1991) note that countless objects within a person’s reality have designated subjective meanings, before a person becomes conscious of them. A person’s knowledge of these objects, as already established, develops from social engagements. However, it also requires the utilization of a shared language, which is learned from other social actors, like parents, siblings, and teachers (Harris 2006; Berger and Luckmann 1991). Social actors who pass on knowledge, including the shared language, to the next generation, learned from similar figures in their own social lives; this helps perpetuate social knowledge of objects between generations (Crotty 1998). Contextually, knowledge of objects is also informed by the culture, history, politics, social settings, time, and the geography in which that knowledge is socially produced. Berger and Luckmann (1991) note this as common-sense knowledge, which is the common understanding shared between actors inhabiting a given time and place, within a shared social network. Common-sense knowledge can also be described as the taken-for-granted understandings that people apply to their everyday reality (Berger and Luckmann 1991). Furthermore, Berger and Luckmann (1991, p. 37) state there is an “ongoing correspondence” between actors and meanings within the same social network that produces an evolving “common sense about its reality” that changes over time. Hence, the knowledge of objects that is passed on through generations, will also evolve between generations, as meanings are re-contextualized and re-negotiated between new social actors (Berger and Luckmann 1991). This helps explain why older explanations for objects persist on into the next generation. However, it also helps explain why meanings for objects that may have once been widely accepted by one generation, evolve to become less so, by the next or subsequent generation. Finally, as reality in Social Constructionism is relative to the observer, and to the time and space in which that observer resides, this indicates that context is important (Burr 2015; Patton 2015; Lincoln and Guba 2008; Norum 2008; Berger and Luckmann 1991). Establishing the circumstances in which knowledge is produced, such as the socio-historical-political backdrop, can help understand the contextual influence of these forces, on research data. As Nichols (2015) notes, the topics and themes that make up language data will be context-specific to the arena in which they are produced. However, Nichols (2015) also notes the difficulty of establishing context in qualitative research, especially when compared to quantitative studies. This is due to context being rigidly defined/controlled in quantitative studies, so when manipulated, it produces precise and reproducible empirical observations. Hence, contextual knowledge in qualitative research can help understand the circumstances in which knowledge is produced, but is problematic in establishing causation (Nichols 2015). As Berger and Luckmann (1991) note, there is a considerable difficulty attached to imposing reproducible parameters on the subjective interactions between two people in a social setting. Though, the difficulty inherent in quantifying’s these interactions, also gives credence to the use of Social
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Constructionism informed research in such circumstances, as it is not restricted by the noted limitations.
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Power
One consideration regarding how realities might differ between people who share a similar time and space is a person’s position within a given social network. For example, one’s construct of reality from a place of privilege will be different to those who are disadvantaged, oppressed, and/or marginalized (Patton 2015; Crotty 1998). A foundation that helps understand these different positions in society can be found in the work of Karl Marx and his discussion of social class. Marx was writing at the time of the industrial revolution, when the means of production were changing rapidly. The established means of production had been one based on agriculture or crafts, where the individual had control over the labor process, even if they did not own the land or the item to be sold (Cheek et al. 1996; Edgell 1993). This changed to one based on mass production of goods within factories (industrialized capitalism), where the labor process was controlled by the owner (Cheek et al. 1996; Edgell 1993). The change in the mode of production from one that was feudally based, to industrial forms of labor, resulted in a division of labor between owners of the means of production (the bourgeoise) and workers (the proletariat), who sold their labor power for a wage (though it should be noted that Marx saw similar dualism of class/ power before the industrial revolution, including power differences between slave and owner, serf and master, for example) (Abercrombie et al. 2006; Cheek et al. 1996; Edgell 1993). The proletariat, as a consequence of not owning the means of production, became reliant on work from the bourgeoisie who did, and hence found themselves in a position of reduced power (Edgell 1993). Furthermore, as a key tenet of capitalism is to maximize profit, a consequence is the reduction, where possible, in the cost of manufacturing goods (Abercrombie et al. 2006; Cheek et al. 1996; Edgell 1993). One method of reducing costs and increasing profits is paying lower wages, which risks exploitation of the worker (the proletariat) (Edgell 1993). Marx suggests that these competing ideals, of the bourgeoisie wanting to maximize profit versus the proletariat not wanting to be exploited, lead to class conflict (Edgell 1993). Moreover, this conflict helps unite each class in opposition to the other (two different realities), which Marx’s predicted as ending in the uprising of the proletarians, against the bourgeoisie in a socialist revolution (Abercrombie et al. 2006; Edgell 1993). One potential method used by the bourgeoisie for maintaining control over the proletariat (and preventing revolutions) is found in ideology. Marx’s critique of ideology demonstrated the way in which ideas in society are socially constructed by the powerful to serve their interests, but are also disguised as representing the needs of the common man, to help limit revolutionary thought and promote hegemony (Cheek et al. 1996; Edgell 1993). People in positions of power may also focus
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on validating forms of knowledge that help maintain their authority, while in comparison, those who lack power can gravitate toward forms of knowledge that help liberate them from oppression (such as revolution) (Patton 2015; Crotty 1998). Another way in which those with power may attempt to solidify their position is by constructing the terms of acceptable behavior within society and/or by defining the constructs of legitimate activity (Burr 2015; Weinberg 2008). These constructs of power work to enshrine privilege, while limiting equity (for example, the rich stay rich rather than resources being more evenly distributed, or even distributed based on need) and entrenching the position of the poor (Laris and MacDougall 2017). Those in power can also use these constructs to de-legitimize groups in society, who question their privileged power base (Burr 2015; Weinberg 2008; Crotty 1998). Further, when these constructs of power are not adhered to, additional constructs exist that legitimize how people are treated for acting outside of the constructs of power, with examples like monetized penalties or exclusion from society (for example, being placed in prison) (Burr 2015). Weinberg (2008, 2014) notes that a common philosophical position in constructionism, adopted from the work of John Locke, is that humans have a universal capacity to rationally analyze their sense data. The rational analysis of sense data establishes a person’s self-interest; Weinberg, citing Locke (2014, p. 29), notes that the ability to realize self-interest provides humans with “...inalienable rights to life, liberty and property.” This places an obligation on governments to govern in such a way that helps facilitate these rights (Weinberg 2014). However, if those who govern do not, then Locke suggests that they do not warrant the obedience of their people (Weinberg 2014). Hence, similar to Marx’s discussion regarding social class and ideology, where those with power only govern to better their own self-interest, the common people may rise up (in protest, or to cause civil unrest, for example) against the status quo. It is in this lack of egalitarian opportunity, where the individual’s self-interest is inhibited by the state, by state institutes, or by those with power who care more for their own self-interest, that social constructionism engages with the ideas of Locke and Marx to provide a voice to those who otherwise struggle to be heard (Weinberg 2014). This is accomplished through Social Constructionism relative positioning, which acknowledges that those who share a reality can have different understandings, meanings, and interpretations for the phenomena that make up that reality. By developing an understanding of the different meanings a group may assign to phenomena within a shared reality, one can disrupt socially constructed notions of power through questioning of the “taken for granted.” Put in another way, by understanding the status quo, by examining construction of meaning, and understanding why meaning is perceived in the way it is by different groups, can provide insight into how power is negotiated between different stakeholders, who share the same social world (Holstein 2018). In a less revolutionary application to Marx and Locke notions explored above, these ideas can be used to investigate and critique difference in power, especially those that cause poorer health outcomes in groups who lack an established voice.
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Social Constructionism, and It Relevance to Health
Social Constructionism’s position that knowledge is socially constructed has implications for the universal truths found in a positivist reality, including those that inform medical science (Nettleton 2021). Specifically, while positivist investigations of universal truths are considered useful, due to their dedication to precise measurements, the produced knowledge still has origins in the human inquirer (Nettleton 2021; Lincoln and Guba 2013; Abercrombie et al. 2006). As Cheek et al. (1996, p. 151) note, “human behaviour and knowledge are human inventions.” A consequence of this insight is that positivist knowledge is subject to the same limitations as socially constructed knowledge, in that it is specific to a time, place, and the people involved. Hence, a different set of people, influenced by a unique set of social constructs, investigating the same phenomena as others, may identify and/or interpret the results of their research in a new/different way. This should in no way be seen as negative, however, as different ways of understanding the same phenomena bring new insights/ways of understanding that phenomena. The relevance to health is that a person’s understanding of disease, illness, what it means to be sick, how that sickness is treated, and by who, will be specific to the time, place, and culture in which they exist (Nettleton 2021; MacDougall 2017; Berger and Luckmann 1991). Moreover, and similar to previous discussions, a relativist’s ontology gives insight into how competing methods of understanding, diagnosing, and treating the same phenomena of illness can exist within the same society, at the same point in time (think Western medicine verse Chinese medicine) (Nettleton 2021). An implication of critiquing health through a social constructionism lens is that while it can be acknowledged that modern medical science is grounded in precise, empirical investigations, those that apply that knowledge, are not (Nettleton 2021 citing Freidson 1970). A potential problem with this line of thinking is the importance placed on the limited few in society who have access to the knowledge and equipment needed to treat those who are sick, as this places them in a position of considerable power (Nettleton 2021; Cheek et al. 1996). This power, at its worst, can be used to legitimize who is, and what counts as being, sick in a given society (Nettleton 2021; Cheek et al. 1996). As discussed earlier in Marx’s critique of ideology, having the power to determine what counts as illness, how it is treated, and who gets access to that treatment, can work to help those with this power, stay in power (Nettleton 2021; Cheek et al. 1996). These same avenues may also be used by those who govern medical practice, to exploit how medical knowledge and services can be accessed, used, and by who, to help maintain embedded class structures (Cheek et al. 1996). One method by which this may be carried out is by placing the onus of poor health on the individual, which acts to cover up wider issues in society, not addressed by those in power, that cause poorer health outcomes (Keleher 2022a; Baum et al. 2016; Cheek et al. 1996). Finally, the social circumstances in which doctors and other medical professionals practice, and the wider societal forces which cause them, can also have considerable implications for people’s health. Take, for example, the increased burden of disease and premature death experienced by Australia’s Aboriginal and Torres Strait Islander
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peoples, despite living in a country with a first-class medical system and long life expectancy (Keleher and MacDougall 2022). The causes of these poorer health outcomes for Australia’s First People are manifold, but include factors such as colonialization, dispossession, and destruction of culture (Keleher 2022b). Another factor is the predominance of western medicine and economic thinking, which results in health services being poorly distributed in areas of need (such as in rural and remote areas due to the cost) and/or the use of culturally inappropriate services to meet the health needs of Australia’s First People (O’Donnell and MacDougall 2022). This includes the limited (or even completely ignored) use of Indigenous knowledge systems to help understand and treat Australia’s First People (O’Donnell and MacDougall 2022). Essentially, one set of socially constructed ways of identifying, treating, and rationalizing health, including the institutions and practices that have evolved around those social constructs, are privileged before all others. This, while not solely responsible for the poorer health outcomes of Australia’s First People, ultimately adds to the burden of disease and lower life expectancy. Using a Social Constructionism ontology to investigate (such as the one outlined next) how different groups in a given society construct notions of health and illness can be used to critique the existing systems. Moreover, examining how different groups engage with these systems, how they are affected by them, and the barriers which exist in accessing them can provide insight into how these inequities are established, and more importantly, how they might be addressed.
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A Method of Investigating Multiple Groups Engaged with a Shared Reality
To re-cap, in Social Constructionism, reality is relative to the observer (or like group of people) and the social lens through which they define it, so multiple constructs of the same phenomena can exist, which results in competing definitions of that phenomena (Patton 2015; Lincoln and Guba 2013; Weinberg 2008). From a research perspective, multiple individual accounts of the same shared reality can provide a nuance and a detailed understanding regarding the different ways in which a shared phenomenon is understood. However, for large cohorts, an individual level of analysis may quickly become unsustainable. Accordingly, a researcher must utilize Social Constructionism in a more realistic way. Patton (2015), in his discussion of Social Constructionism use in program evaluation, importantly, recognizes that “different groups” can be identified based on their relationship to the same shared phenomena of interest and compared against each other. The example given in Patton’s (2015) explanation includes the difference in perceptions that would be observed between a program’s participants, compared with the program’s staff. Though, an analysis of different group perceptions which is based on shared “surface level” circumstances such as “program participant” versus “program staff” is potentially problematic. This is due to the individuals in each group only sharing broad/ loose associations with each other, which can affect the accuracy of the phenomena that a researcher is attempting to describe.
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Instead, concepts from social constructionism such as common-sense knowledge (discussed earlier) by Berger and Luckmann (1991) and Crotty’s (1998) discussion of “culture” can help define individuals who share a group, and hence reduce variations. To re-cap, common-sense knowledge is the common understandings shared between social actors, within a shared social network (Berger and Luckmann 1991). Crotty (1998) notes that our common-sense knowledge is partially a result of the “culture” into which individuals are born. This culture takes the form of “a series of significant symbols” (Crotty 1998, p. 54), that reflect the social, political, education, and upbringing of people (or like group) (among other influences), relative to the time and place in which they exist. These “significant symbols” also help shape, and influence, the way in which people perceive and describe phenomena within their world (Crotty 1998). Crotty (1998, p. 64) summarizes these ideas well by suggesting that a single voice giving a description of a phenomena is actually “the voice of our culture – its many voices” which is relative to a time (including the age of participants) and place in which those people exist. Hence, to help reduce variations in people’s description of the same shared phenomena, a research investigation can refine groups to those who share similar geographical, temporal, demographic, and social position (as some limited examples). This, in-turn, can increase the chance of finding a similar, common-sense understanding for phenomena, from groups who share similar realities. In the authors’ own research investigating the perceptions of different groups engaged with Non-Government Organisation’s (NGO) working with disadvantaged children in Cambodia, they identified and defined four groups as: • The children receiving services who shared a similar age, geographic location, attendance at the same NGO, culture (Khmer), and circumstances (material deprivation). • NGO staff who shared a place of work, a job that required higher education, culture (Khmer), geographic location, and who were invested in the activity of helping others. • NGO volunteers from the Global North who shared a similar age and geographic location (four people from the same western European country, each approximately 20 years of age, and three people from the same university in the United States, also approximately 20 years of age each), who volunteered at the same NGOs in Cambodia, and with the shared aspiration to “help others.” • Former students of NGOs services, who share culture (Khmer), have similar geographic backgrounds and circumstances that led them to participate in NGO services, who received an education from the NGOs, and hence had an ability to discuss where that education has led them (employment or university, for example). Defining the four cohorts in the manner described, produced similar descriptions for phenomena, from individuals who shared a group, because of their shared similarities. Moreover, there were clear distinctions between groups, in regard to the way in which questions were interpreted and answered, in relation to the same shared phenomena. For example, when volunteers from the Global North were asked
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why Khmer children attended the NGOs, they responded by saying it was a safe and clean space that helped Khmer students escape the reality of their existence outside of the organization, which they described as “pretty ordinary,” “terrible,” and “slums.” However, when Khmer participants were asked the same question, responses concentrated on the organization and its services, and had no consideration (or judgment) regarding their home or village environment. Once groups are defined, qualitative data can be collected through methods such as interviews, focus groups, observations, or descriptive surveys. Importantly, whichever method is used to collect data, the questions and topics explored should have some form of consistency across groups, relative to the group’s relationship to the central theme of the research. This step helps provide consistency to the phenomena described by the various groups, while also aiding later comparison. In the authors’ own research, for example, questions in the semi-structured interview guide did not change meaning between groups, only context relative to the person’s relationship to the child receiving NGO services (the central theme of the research). For example, one question asked the child receiving services about the education they received, while the NGO staff were asked about the education they delivered. Once data collection is complete, the individuals who make up a group with similar identifiers are analyzed together to develop a shared understanding for phenomena within that reality. In their own research, the authors collected data via interviews with adult participants (NGO staff, NGO volunteers, and former students), and conducted focus groups with the children attending the NGO’s. These interviews and focus groups were audio recorded, transcribed, and then ordered into their defined groups. Then, using a thematic analysis approach, each set of grouped transcripts were read and analyzed together, to establish an understanding of how each group defined phenomena, within their shared reality. This process is laid out in the conceptual model below (Fig. 1): The model diagrammatically sets out the approaches described above, including how it can produce multiple understandings of the same shared phenomena. These multiple understandings, in turn, can help identify if meanings are shared or not between groups. The model also highlights that where ideas are shared across groups who have a greater connection like nationality or identity (such as the three groups in the authors’ research who were all Khmer) may be an indication of that more universal connection. The above conceptual model can also be adjusted to suit similar situations where multiple stakeholders are engaging with a shared phenomenon. The situation or phenomena of interest being investigated is also flexible, as is the number and type of stakeholder group investigated (see Fig. 2 below), meaning the model’s application potential is considerable. A blank example is given below, along with suggestions regarding how the model should be used and adjusted to suit other research investigations. The Relativist Conceptual Model uses Social Constructionism relative positioning to explore the different understandings, meanings, and interpretations that different groups have for the phenomena that make up those realities. By developing an understanding of the different meanings that groups have of events or
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Fig. 1 Relativist conceptual model
phenomena, one can critique constructed notions of power, and even question the “taken for granted” ideas, which enables the disruption of accepted notions of power.
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Conclusion and Future Directions
This chapter began by introducing a number of the key ideas related to “The Social Construction of Reality” by Peter Berger and Thomas Luckmann, with reference to a number of other important authors, to build a foundation for the assertion that reality is socially constructed. An investigation of social class and power was then explored, which drew on the work of Karl Marx and John Locke, to help establish how these differences occur, are maintained, and are assumed to be true. Next, Social Constructionism and its relevance to health care were examined. This examination included a discussion on the socially constructed nature of medicine, and how different understandings of health can exist within a given society, at the same time, and in the same place. The privileged position of those who diagnose and treat illness in society was also explored, including the potential implications of that privilege being mis-used by medical professionals, or those who govern them. Finally, a practical method of using Social Constructionism idea to conduct a research investigation was introduced. This practical method can be used to establish how different groups engaged with the same shared reality give meaning to events
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Fig. 2 Blank relativist conceptual model
and phenomena, which in turn can help critique differences in power, enabling the establishment of a more equitable outcome for all. Regarding the first author’s work in Cambodia, the data collection for that study was originally completed in December 2019, months before the COVID-19 pandemic began to have a serious affect on travel and trade. The World Bank (2020) provided a stark figure of the actual impact, stating that Siem Reap (a tourist town in the northwest of Cambodia) experienced a 99.6% reduction in tourists in April 2020, when compared to April 2019. The impact of reduced tourism in Siem Reap was demonstrated in a survey by the Asia Foundation in April 2021, where, from a sample of 167 businesses, 59% reported having closed their doors. His hope is to return to Siem Reap to investigate the impact of these events on Khmer people in the future, utilizing a Social Constructionism approach similar to that outlined above, to help untangle the pandemic’s impact on different strata of Khmer society. From this research, the authors of this chapter hope to establish an understanding of how those at the margins were impacted so that responses to events of similar magnitude in the future will be better informed (and hopefully have better outcomes). The potential exists for similar studies to be carried out across a range of communities so that a body of knowledge regarding how different groups were affected, understood, and responded to the pandemic can be established. This, in turn, may provide even greater insight into similar events in the future, as well as providing valuable knowledge regarding how to address them.
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Cross-References
▶ Social Determinants of Health and Global Public Health ▶ Social Justice and Global Public Health
References Abercrombie N, Turner B, Hill S (2006) The Penguin dictionary of sociology, 5th edn. Penguin Books, London Baum F, Freeman T, Sanders D, Labonté R, Lawless A, Javanparast S (2016) Comprehensive primary health care under neo-liberalism in Australia. Soc Sci Med 168:43–52 Berger P, Luckmann T (1991) The social construction of reality: a treatise in the sociology of knowledge. Penguin Books, London Best J (2008) Historical developments and defining issues of constructionist inquiry. In: Holstein J, Gubrium J (eds) Handbook of constructionist research. The Guilford Press, New York Burr V (2015) Social constructionism, 3rd edn. Routledge, East Sussex Cheek J, Shoebridge J, Willis E, Zadoroznyj M (1996) Society and health: social theory for health workers. Longman Australia, Melbourne Crotty M (1998) The foundations of social research: meaning and perspective in the research process. Allen & Unwin, St Leonards Cuff E, Sharrock W, Francis D (1992) Perspectives in sociology, 3rd edn. Routledge, London Denzin N, Lincoln Y (2008) Paradigms and perspectives in contention. In: Denzin N, Lincoln Y (eds) The landscape of qualitative research, 3rd edn. Sage, Thousand Oaks Dowling M (2007) From Husserl to van Manen: a review of different phenomenological approaches. Int J Nurs Stud 44:131–142 Edgell S (1993) Class. Routledge, London Green J, Thorogood N (2018) Qualitative methods for health research, 4th edn. Sage, London Gubrium J, Holstein J (2008) The constructionist mosaic. In: Holstein J, Gubrium J (eds) Handbook of constructionist research. The Guilford Press, New York Harris SR (2006) Social constructionism and social inequality. J Contemp Ethnogr 35(3):223–235 Holstein J (2018) Advancing a constructionist analytics. In: Denzin N, Lincoln Y (eds) The Sage handbook of qualitative research, 5th edn. Sage, Thousand Oaks Keleher H (2022a) Health systems and policy. In: Keleher H, MacDougall C (eds) Understanding health, 5th edn. Oxford University Press, South Melbourne Keleher H (2022b) Measuring the health status of Australians. In: Keleher H, MacDougall C (eds) Understanding health, 5th edn. Oxford University Press, South Melbourne Keleher H, MacDougall C (2022) Understanding health: an introduction. In: Keleher H, MacDougall C (eds) Understanding health, 5th edn. Oxford University Press, South Melbourne Larish P, MacDougall C (2017) Organisational change. In: Keleher H, MacDougall C (eds) Understanding health, 4th edn. Oxford University Press, South Melbourne Lincoln Y, Guba E (2008) Paradigmatic controversies, contradictions, and emerging confluences. In: Denzin N, Lincoln Y (eds) The landscape of qualitative research, 3rd edn. Sage, Thousand Oaks Lincoln Y, Guba E (2013) The constructivist credo. Left Coast Press, Walnut Creek MacDougall C (2017) Determinants of behaviours. In: Keleher H, MacDougall C (eds) Understanding health, 4th edn. Oxford University Press, South Melbourne Nettleton S (2021) The sociology of health and illness, 4th edn. Polity Press, Cambridge, UK Nichols L (2015) Contextual understanding in constructionism: a holistic, dialogical model. Qual Sociol Rev 11(2):76–92 Norum K (2008) Reality and multiple realities. In: Given L (ed) The Sage encyclopaedia of qualitative research methods. Sage, Thousand Oaks
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O’Donnell K, MacDougall C (2022) Working with indigenous communities. In: Keleher H, MacDougall C (eds) Understanding health, 5th edn. Oxford University Press, South Melbourne Patton M (2015) Qualitative research and evaluation methods, 4th edn. Sage, Thousand Oaks Richardson-Tench M, Nicholson P (2022) Research in nursing, midwifery and allied health: evidence for best practice, 7th edn. Cengage Learning Australia The Asia Foundation (2021) Revisiting the pandemic: rapid survey on the impact of Covid-19 on MSMEs in the tourism sector and households in Cambodia, The Asia Foundation, viewed online 7th March 2023. https://asiafoundation.org/publication/revisiting-the-pandemic-rapidsurvey-on-the-impact-of-covid-19-on-msmes-in-the-tourism-sector-and-households-incambodia/ Weinberg D (2008) The philosophical foundations of constructionist research. In: Holstein J, Gubrium J (eds) Handbook of constructionist research. The Guilford Press, New York Weinberg D (2014) Contemporary social constructionism: key themes. Temple University Press, Philadelphia World Bank (2020) Cambodia economic update: Cambodia in the time of COVID-19, World Bank, viewed online 7th March 2023. https://www.worldbank.org/en/country/cambodia/publication/ cambodia-in-the-time-of-covid-19-coronavirus-economic-update-may-2020
Symbolic Interactionism and Global Public Health Michael J. Carter and Leah V. Lamoreaux
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 General Tenets of Symbolic Interactionism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Using Symbolic Interactionism to Understand Issues Related to Global Public Health . . . 3.1 Foundations in Symbolic Interactionism and Public Health . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Recent Studies that Apply Symbolic Interactionism to Public Health . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Symbolic interactionism is a sociological perspective and research methodology that addresses how society is constructed and maintained through meaningful social interactions. Aimed at interpreting the subjective vantage point of individuals, symbolic interactionism is a useful tool for understanding individuals’ lived experiences and how individuals apply meanings to themselves and others as they navigate their social world. This chapter discusses how symbolic interactionism has been employed by scholars in the social sciences and healthcare fields to better understand issues related to public health. The chapter provides a background of the perspective and how it evolved as a distinct sociological paradigm and presents a review of the literature as it pertains to studies that have applied a symbolic interactionist research methodology to better understand phenomena related to global public health. Keywords
Symbolic interactionism · Public health · Sociology · Social psychology M. J. Carter (*) · L. V. Lamoreaux Sociology Department, California State University, Northridge, CA, USA e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_39
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Introduction
Symbolic interactionism is a theoretical framework that addresses the manner in which society is created and maintained via social interactions (Blumer 1969; Carter and Fuller 2016; Stryker 1980). It is a sociological perspective, or paradigm, that emerged in the twentieth century. While sociological paradigms often address macro- or meso-level phenomena such as large-scale social structures, social institutions, and organizations (e.g., “structural functionalism,” a perspective aligned with the ideas of Talcott Parsons (1949) and Robert Merton (1957)), symbolic interactionism generally addresses microlevel phenomena, particularly the interchanges that occur between individuals and within small groups. Rather than using a “top-down” approach that addresses social aggregates and macro structures as a starting point to forge explanations of social life, symbolic interactionism reverses this strategy by employing a “bottom-up” approach that begins with the subjective vantage point of individuals and their interactions with others to develop a cohesive understanding of society. Symbolic interactionism was inspired by the Scottish Moralist and American Pragmatist philosophers, and developed from the ideas of Charles Horton Cooley (1902) and George Herbert Mead (1934). Cooley and Mead were early twentiethcentury social psychologists who wrote about the nature of the self and its relationship to greater society. For these scholars, any understanding of an individual or society must consider the reflexive nature between both. For them, the self is not an entity that exists in isolation; it is rather a social construct that arises through socialization and interactions with others. As the individual self develops over time, it becomes an entity that is both the subject (the “I” in Mead’s terminology) and object (the “me” in Mead’s terminology) of action (Mead 1934). Action, or behavior, occurs via a process of “symbolic interaction,” where individuals interpret each other’s gestures and act toward one another based on the interpretations (or meaning) of each to each other. As a perspective, symbolic interactionism emphasizes that in order to understand human behavior, the manner in which behaviors are negotiated and interpreted must be considered, along with objects, contexts, and settings in which the behavior occurs. The processes involved in symbolic interaction (the interplay among self, others, behaviors, and objects) together explain how society “works.” The name “symbolic interactionism” was coined by Herbert Blumer (1969), a sociologist from the University of Chicago who articulated Mead’s ideas and developed a more accessible theoretical and methodological perspective. Over the years, most of the theory and research that is associated with the name symbolic interactionism has been aligned with the ideas of Blumer, though competing perspectives have emerged over time that use the same name. Sheldon Stryker’s (1980) “social structural” version of symbolic interactionism (often referred to as the “Indiana school” of symbolic interactionism) and a more quantitatively oriented variant promoted by Manford Kuhn (1964) and his colleagues (often referred to as the “Iowa school” of symbolic interactionism) are two such examples (see Carter and Fuller (2016) for a detailed summary of the variants of symbolic interactionism).
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To this day, symbolic interactionism remains as one of the leading paradigms in the field of sociology and has been applied across the social sciences in a variety of studies. This chapter addresses how symbolic interactionism has been used to better understand issues related to public health. It first discusses the general tenets of the perspective and then presents a review of the literature that summarizes key studies that pertain to global public health.
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General Tenets of Symbolic Interactionism
A main concern of symbolic interactionism regards the development of the human mind through stages of development, and the emergence of the self through interchanges via significant others. The emphasis here is on language and significant symbols, and how individuals create a meaningful world together through symbolic communication. Less concerned with objective social structures that coerce and impose on individuals (which was a main concern for many classical sociological theorists such as Emile Durkheim (1982)), symbolic interactionism generally focuses on how individuals use significant gestures during interactions, the subjective meanings that individuals create together, and how these meanings in turn reflect greater “society.” Central to the perspective are four tenets (Blumer 1969): (1) individuals act based on the meanings that objects in the world have for them, (2) interaction occurs within a particular social and cultural context where physical and social objects (i.e., individuals) as well as situations are defined or categorized based on individual meanings, (3) meanings emerge from interactions with others and with society in general, and (4) meanings are continuously created and recreated through an interpreting process that occurs during social interactions. Over the past half-century (and beyond), many scholars have used a symbolic interactionist approach in one way or another to understand a variety of social phenomena. As a methodology, it has applications in many forms, with studies employing interviews, surveys, ethnographies, content analyses, and experiments (Carter and Montes Alvarado 2018). Common areas of inquiry have included work on the family (Stryker 1959), identity and social roles (Carter and Mangum 2020; McCall and Simmons 1978), deviance (Becker 1953), and collective behavior/social movements (Lofland 1996; Stryker et al. 2000). One also can find scholars employing an interactionist approach in more esoteric fields, such as cultural studies (Fine 1996), semiotics (Manning 2003), and postmodernism (Lemert 1997). Even neo-Marxists have found use for the tenets of symbolic interactionism (Schwalbe 1986). In the following section, how symbolic interactionism has been used by scholars to better understand issues related to global public health will be discussed. Symbolic interactionism is particularly useful for understanding dynamics regarding health and sickness and the impact of health crises on individuals (and even greater communities) since its focus is on the meanings individuals apply to self and others as they navigate the experiences of their lives – meanings that can vary across cultures and for specific individuals within cultures. Issues related to health and
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well-being can involve myriad psychological and sociological processes such as stigmatization, labeling, and emotions. Health issues can affect individuals’ identities and self-concept, how individuals see themselves compared to others, and one’s status in the social structure. And, issues regarding health can greatly influence the quality of interpersonal relationships. Symbolic interactionism is well-equipped to understand health-related phenomena since many health issues involve the aforementioned processes. Indeed, the strength of symbolic interactionism as a perspective centers on understanding factors that influence self and identity construction, labeling and social comparisons, and interpersonal relationships. The chapter now considers some of the research that has used symbolic interactionism to better understand issues related to global (and also regional) public health.
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Using Symbolic Interactionism to Understand Issues Related to Global Public Health
A vast amount of theoretical and empirical studies has emerged across the social sciences that use a symbolic interactionist perspective to understand public health. These studies consider the way public health issues are influenced by various social processes and recognize that external forces outside of an individual’s immediate control can affect their health. Symbolic interactionist studies on public health consider the subjective, lived experiences of individuals and emphasize how these experiences provide insight into greater social problems that relate to public health. Key elements of such studies focus on the meanings people give to health and illness, how these meanings are constructed and interpreted through social interaction, how these meanings shape the self and identity, and how these meanings influence human action. Given the extensive number of studies on symbolic interactionism in public health, the authors highlight some of the preliminary studies that paved the way for interactionist applications to public health research and then focus on some of the most recent and relevant studies that together illustrate how symbolic interactionism has been used to understand issues related to public health. While summarizing all the relevant literature is beyond the scope of this chapter, the authors highlight some of the classic (and recent) studies that have used an interactionist lens to address public health concerns.
3.1
Foundations in Symbolic Interactionism and Public Health
Public health aims to improve and prolong the quality of life for individuals by preventing disease, mitigating risk, and promoting and protecting the health of individuals and their communities. The symbolic interactionist perspective has long been utilized by researchers to address a variety of social problems that pertain to public health. Foundational studies that laid the groundwork in applying a symbolic interactionist framework to research on public health center on the notion of health and illness as social constructs created through social interactions. Classic
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studies from Goffman (1963) and Becker (1963) illustrate how concepts such as social stigma and labeling generate judgment attributes in microlevel social interactions that negatively affect individuals’ self-concepts and well-being. Stigmas and labeling are social processes that are well suited for a symbolic interactionist framework, as each involves meanings between self and other that can greatly affect social interactions. For example, noting that social stigmas are attributes that are “deeply discrediting” (Goffman 1963, p. 3), Goffman used case studies and interviews to understand stigmatized individuals’ feelings and perceptions of self in relation to “normals,” and how stigmatized individuals manage a social identity deemed as “spoiled” and, therefore, socially unaccepted by society. Likewise, Becker’s groundbreaking research on labeling was revealed through numerous studies on deviance and drug culture where he explored how certain behaviors are socially defined as deviant. Becker employed interactionist methods by examining deviant behavior from the standpoint of deviants themselves and how their experiences and identity are interpreted through interaction with others. He applied the tenets of symbolic interactionism to show that deviant behavior is not inherent to an individual but rather a consequence of being labeled as deviant by others. He concluded that labels attributed to individuals alter their self-concept and affect the way others respond to them. Both Goffman and Becker’s work demonstrates how stigma toward certain conditions and behaviors are socially constructed through interaction, subsequently shaping people’s understandings of what is considered healthy and what is not. In particular, Goffman’s theory of social stigma and Becker’s concept of labeling have greatly influenced the way social scientists study stigma in connection to psychological and physical conditions, substance use, chronic illnesses, and mental health. Later research conducted by Charmaz (1983) and Conrad (1985) greatly contributed to the interactionist sociology of health and illness. Founder of constructivist grounded theory, Charmaz’s work employs an interactionist methodology in the form of illness narratives to examine how individuals with chronic illnesses experience and construct their identities. Her research examined how individuals with chronic illnesses experience a sense of loss of their former self due to their illness. Charmaz conveyed that the lives of chronically ill individuals are more restricted; they socially isolate, feel more susceptible to negative judgment from others, and become more dependent on others for self-definition and worth, often feeling like a burden. Conrad’s study used data from 80 in-depth interviews of people with epilepsy to explore why people take or do not take their medication. In contrast to previous research on compliance that focused solely on doctor-patient interactions, Conrad’s study examined the social meanings of medications from the perspectives of the respondents and how the meanings people give to medication in their everyday lives affect how they act toward medication, or what Conrad calls “medication practice.” He found that his respondents’ action toward medication relies on attempts to assert control over a condition they have little control over, often modifying their medication practice based on the social circumstances they encounter.
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In general, symbolic interactionist studies on public health consider the subjective nature of human action, recognizing that meaning around health and risk behavior is actively interpreted, negotiated, and modified through the interaction between individuals and their social environments. Furthermore, people’s identities are often shaped by normative conceptions of fitness, which further affects their presentation and sense of self. Interactionist research in this vein has focused primarily on the social construction of mental disorders and the concept of sickness in relation to identity (Charmaz 1991; Conrad 1985; Daniels 1972; Goffman 1961; Scheff 1966), drug culture (Becker 1953; Denzin 1987), as well as interactions between patients and medical professionals (Glaser and Strauss 1964; West 1984). Other symbolic interactionist studies on public health incorporate established interactionist theories and concepts in their research such as medicalization (Conrad 1975), labeling theory (Becker 1963; Scheff 1966), social stigma (Goffman 1963), meaning-making (Blumer 1969; Mead 1934), and identity construction (Goffman 1959; Stryker and Serpe 1982). While the scope of public health matters researched using symbolic interactionism is far-reaching and impossible to catalog here completely, in the following section we review some of the most relevant and recent interactionist studies on public health.
3.2
Recent Studies that Apply Symbolic Interactionism to Public Health
The expansion of interactionist approaches to research on public health in recent years examines a range of issues from substance use, chronic disease, social isolation, reproductive health, epidemics, nutrition, access to health care, and the communicative relationships between patient and provider. Interactionist research on substance use helps to make sense of users’ attitudes and behaviors in drug culture, their experiences with addiction, and how larger social understandings around drug use create narratives that stigmatize users. For example, Hoolachan (2020) uses a symbolic interactionist interpretation of self-identity and stigma to explore the “spoiled” and “celebrated” identities of homeless youth drug users in the United Kingdom. Ethnographic data reveals how residents in a UK youth hostel grapple with self-concepts associated with “generalized other” labels of “homeless,” “youth,” and “drug user” by participating in practices of “distancing” or “othering” that reinforce spoiled identities, but also by embracing positive features of each label as significant parts of their identity formation. The opioid crisis is a challenge worldwide but is particularly problematic in the United States. A recent study conducted by Vaccaro et al. (2021) uses symbolic interactionism to explore the narratives that rural first responders from Appalachian counties in Pennsylvania make around the opioid epidemic. Narrative analysis of interview transcripts from frontline responders who frequently interact with opioid users shows that responders construct narrative magnifications to cope with their emotions and manage the opioid situation in their communities. Responders created exaggerated stories that presented themselves as capable protagonists fighting an
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uncontrollable battle made more difficult by antagonistic policies and opioid users negatively characterized as “at their worst” (Vaccaro et al. 2021, p. 759). Magnifying stories this way allowed responders to control emotional frustrations and create a rationale of control and concern around their work. However, by constructing narratives this way, responders also moderated their sympathy toward their clients, resulting in “compassion fatigue” and mistrust in their interactions with opioid users. A related study that examines the relationship between stigma and interaction with opioid users was conducted by Cernasev et al. (2021), who used Link and Phelan’s symbolic interaction stigma model (Link and Phelan 2001) to understand the opioid epidemic. In trying to understand how stigma might operate from the perspective of pharmacy practitioners who interact with patients using opioid medications, Cernasev et al. (2021) found that technicians report a variety of feelings and interactions that reveal some sympathy toward patients but also an overall frustration with and need “to develop a thick skin” in order to deal with patients (Cernasev et al. 2021, p. 6). Implications from the study convey the need to diminish opioid use stigma and the importance of compassion during interactions with patients. Symbolic interactionism has also been applied to research on alcohol use and the increased use of e-cigarettes among individuals in contemporary society. A study examining how early morning drinkers at bars present their identities in relation to their alcohol use and alcoholism uses a symbolic interactionist approach to exhibit the strategies used by drinkers in managing their use of alcohol and their selfpresentation (Skjaelaaen 2016). Using ethnographic methods, the observed morning drinkers were found to “give off” information that labels them as alcoholics. However, these drinkers negotiated this label by distinguishing themselves as “good” alcoholics through “control strategies” in the ways they manage their drinking, their patterns of drinking, and their described motives for drinking. In a related study, McCausland et al. (2020) used a constructivist epistemology and a symbolic interaction framework to examine Western Australian e-cigarette vapers’ motivations for use, the symbolic meanings attached to the phenomenon of vaping, and identities associated with the vaper subculture. Symbolic interactionist studies on chronic disease consider how people’s identity and agency are affected by living with a persistent illness. For example, Dubbin et al. (2017) used a critical interactionist lens to examine how African Americans react to and manage living with coronary heart disease (CHD), highlighting the social construction of subjective meanings and symbols related to CHD, but also paying special attention to the power relations that influence those constructions. Illness narratives in the study provide insight into the experiences of African Americans with CHD, illuminating sustained conceptions of CHD as a historically “black disease” and not merely associated with poor eating habits and high-risk behavior, but rather perceived by African Americans as another consequence of persistent racial and structural dynamics that are embedded in society. Other global studies that utilize symbolic interactionism as a frame of reference to understand individuals’ experiences living with chronic disease explore discovery and self-management of diabetes in Indonesia as a social process of learning, decision-making, and acting (Ligita et al. 2019), and the impact of chronic kidney disease on patients and their
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relatives in Northern Brazil (Filgueiras de Assis Mello and Angelo 2018). Additionally, symbolic interactionism has been used to research the social meanings of cancer. Handberg et al. (2015) used symbolic interactionism as a guide for surveying male cancer patients’ barriers toward engaging in rehabilitation. Data analysis from an array of fieldwork methods revealed how masculine ideals among male cancer survivors operate as impediments to rehabilitation, explaining their underrepresentation in rehab centers. Core notions like “fear of losing control” and “striving for normalcy” were associated with interpretations of threatened masculinity, autonomy, purpose, and solidarity. Reproductive health is another prominent concern related to public health. Some studies that apply symbolic interactionism to reproductive health examine stigma and meanings related to abortion and sexually transmitted diseases such as HIV/AIDS. In a study conducted by Kimport (2019), a symbolic interaction approach was used to emphasize how abortion is stigmatized through interpersonal interaction. Data from interviews with women in the United States who visited crisis pregnancy centers (CPCs) for guidance show that CPC counselors stigmatized abortion in interactions with pregnant women by providing “information” that amplified the physical and mental risks of abortion and diligently affirmed the social and religious importance of parenting. Interactionist studies that examine meaningmaking around abortion demonstrate how definitions pertaining to fetal development, bodily autonomy, and the physical procedure of terminating pregnancy are interpreted differently by individuals, affecting perceptions and actions toward abortion. For example, Becker and Hann (2021) examined the ambiguity and management of fetal discourse used by abortion providers who present patientcentered pregnancy tissue viewing. Using a symbolic interactionist framework in their analysis, they centered their findings on the idea of friction in language, the effects that gestational progression has on meanings attributed to fetal tissue, and the visceral impact of observing aborted fetal tissue, which together make the abortion experience “more real” (2021, p. 272). Reinforcing the idea that fetal meanings are socially constructed, a study conducted by Siegal (2020) incorporates symbolic interactionism into a biosocial approach toward understanding how feminists and pro-choice people conceptualize the course of their abortion experiences. Their findings showed that pregnant people “perform interpretive work” in their interactions and social environments, negotiating between the dichotomy of medical and natural ideologies and making meaning out of the process in order to attain “normal” and “natural abortions” (Siegal 2020, p. 3). Rather than thinking of abortion as a standardized procedure and universal experience, Siegel stresses the importance of understanding the individuality of each abortion experience in order to provide better abortion care. Symbolic interactionism has also been applied to research on the prevention and care of sexually transmitted diseases. A study conducted by Crawford et al. (2018) examined interaction in online forums as a mechanism for public health education in the prevention of HIV and other sexually transmissible infections for Australian expatriates and travelers living or working in Thailand. Interactionist concepts like presentation of self, meaning, and socialization were used to analyze the data and
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results showed that the forum was a valuable source for health information and advice, shedding light on the potentiality for online forums as a means for public health interventions in hard to reach mobile populations that are most vulnerable to HIV and other sexually transmitted diseases. Furthermore, research on the topic of perceptions of people with HIV/AIDS have explored the meanings and significance attributed to people living with the virus/disease. For example, symbolic interactionism was used by Zepeda et al. (2021) to study the experiences of people living with HIV/AIDS in Rio de Janeiro. They found that living with the disease is a social phenomenon involving stigmatization, rejection, and isolation. In a related study, Opoku-Dapaah (2020) used a symbolic interactionist approach in a study that examined HIV vaccine acceptance among African American women who live in North Carolina. Data analysis was guided by the interactionist tenet of understanding human behavior through the meanings individuals attach to their social realities. Findings showed that while most participants in the study said they would take an HIV vaccine for protection, misinformation, efficacy concerns, and historically racial and unethical medical injustices were barriers in acceptance and common reasons for objecting to the vaccine. Scholars have also used symbolic interactionism in studies that address acceptance of the human papillomavirus (HPV) vaccine. For instance, Turiho et al. (2017) used symbolic interactionism to explore community perceptions of HPV vaccination in western Uganda, finding that the discerned benefits and safety of HPV vaccination positively increased families’ acceptance of the vaccine. Additionally, a study conducted by Cuesta et al. (2017) used a symbolic interactionist approach to examine the usefulness of social media narratives in providing public health information and sex education regarding HPV. Data showed that narratives on social media, in particular Facebook, are effective means for facilitating HPV prevention. Mental health is another key area of concern in studies on global public health. Symbolic interactionism has been used to study the ways in which mental health is socially constructed, variably interpreted, de- and re-stigmatized, and inextricably linked to identity and agency. Issakainen (2014) used symbolic interactionism to examine how young people negotiate the stigma around their depression. Data revealed that young people negotiated between social conceptions of depression as a mental illness or a matter of “pulling oneself together” in order to make sense of why others perceived them as “abnormal” or why they lacked empathy toward their condition (Issakainen 2014, p. 171). Issakainen showed how young people cope with the social stigma of their condition by reframing their depression as a serious affliction yet also by normalizing their affliction. Marcussen et al. (2019) applied symbolic interactionism to research on mental illness as a stigmatized identity by studying the relationship among reflected appraisals (individuals’ perceptions of how others view them in the context of their identity), self-views (the self-meanings that individuals attach to their identity), and well-being for individuals diagnosed with severe chronic mental illness. Their findings showed that stigmatized self-views are connected to lower self-esteem and self-efficacy as well as greater depression. Furthermore, another study conducted by Marcussen et al. (2021) demonstrated how individuals living with severe mental illness engage in stigma resistance strategies.
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Their research revealed that strategies such as deflection (or self-distancing), challenging stigma through educating others, and activism are associated with greater self-esteem and lower depression. And, a quantitative study by Link et al. (2015) that reinforced the utility of the symbolic interaction stigma model examined the burden of mental illness stigma. Measures of symbolic interaction stigma such as “perceived devaluation discrimination, anticipation of rejection, stigma consciousness, and concern with staying in” were used to assess individuals who have experienced mental illness (Link et al. 2015, p. 117). Regression analyses showed a significant relationship between symbolic interaction stigma and levels of withdrawal, selfesteem, and isolation from relatives. Some have focused on depression per se in their application of symbolic interactionism to mental health. Carter and Mireles (2016) used identity theory, a symbolic interactionist theory of the self, to understand depression in the Deaf community and how Deaf individuals often suffer depression due to difficulty verifying their identities as they navigate a hearing-dominated world. In a related study, Carter (2017) used identity theory as a framework to show how the magnitude and direction of identity change relates to depression, revealing that the more severe one perceives their experience of identity change to be, the greater their level of depression, but that when one perceives that the direction of their identity change is progressive (rather than regressive), they are less likely to be depressed. Other symbolic interactionist studies focus on the mental health of the elderly, specifically dementia. Goodall et al. (2021) used symbolic interactionism and Deweyan transactionalism to inform their study on narrative identity support and relationships among people with dementia. Data from the study suggested that digital technologies and multisensory stimuli encouraged through the use of SENSE-GARDEN facilitate individualized, meaningful activities that can stimulate emotional experiences, preserve the sense of self in people with dementia, and foster interpersonal relationships between the individual and their caregivers. Other research that applies symbolic interactionist methods to studies on dementia explore the experiences and shared activities of spousal caregivers married to people with dementia (DiLauro et al. 2017) and the “visible mechanisms” that signal the emergence of dementia for interpretation in interpersonal interactions (Fletcher 2019). Symbolic interactionism is also extended to the social problem of bullying and mental health. A study conducted by Thornberg and Delby (2019) used a symbolic interactionist perspective to examine Swedish lower secondary school students’ explanations for why bullying occurs. Data collected from young people who had witnessed bullying conveyed explanations that centered on social positioning, such as bullies maintaining a high-status position around peers and the social construction of victims as “different” and “wrong” and, therefore, associated with a low-status position. Another study on the topic of school bullying used symbolic interactionism as a framework to survey the group dynamics involved in the practice of bullying at middle schools in Poland (Wójcik and Mondry 2020). Fieldwork data captured students’ perceptions, rationalizations, and explanations of bullying behaviors; results showed that students involved in bullying created and shared “a system of beliefs and behavioral labels” that reinforced a class hierarchy. For the bullies,
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distinguishing normalcy and reputation management justified the act of bullying (Wójcik and Mondry 2020, p. 276). Additionally, Bouchard et al. (2018) employed symbolic interactionism in their analysis of adolescent girls’ resistance to bullying in their friendship groups. Data were derived from Canadian women’s reflections of their school bullying experiences in adolescence. Results suggested that participants resisted victimization by employing careful strategies that negotiated between conforming to and defying gendered expectations and normative femininity such as “saving face” in order to strengthen group belonging and performing aggressive acts of resistance to stand up and retaliate against victimization. Further, symbolic interactionism has been used to explore in-depth student perceptions of bullying in the micro context of a specific class and individualized case (Forsberg 2021), as well as the increased prevalence of cyberbullying and its various negative effects on health (Brandau and Evanson 2018). Moreover, a combination of symbolic interactionism and arts-based research was used by Khanolainen and Semenova (2020) to assess school bullying through graphic vignettes in Russia. The problem of obesity and other eating disorders has been a public health concern for some time. Symbolic interactionism has been used by researchers to study the experiences of people with obesity and eating disorders to better understand their motives, attitude, and behavior. A study conducted by Holmberg et al. (2018) explored the perspectives and experiences of adolescents in treatment for obesity and how they used social media in clinical settings. Holmberg and his colleagues used Goffman’s dramaturgical model to analyze interviews and social media content from participants, exploring the ways they present themselves on social media, the reasoning behind their presentations, and feelings related to their self-presentation. Results indicated that participants found the potential use of social media in clinical settings to be too exposing and that they did not want to openly share their patient status with peers. While both adolescent girls and boys undergoing treatment for obesity used visual-based social media, girls in particular encountered weight stigma online, making use of tactics to manage their self-presentation and hide their weight, such as refraining from posting close-up images of their bodies and photos of “fattening” foods. In a related study, Van der Spuy et al. (2014) used symbolic interactionism to understand the meanings that men with obesity attach to the object of food and how their interpretations guide their behavior. The study found that meanings attached to food as social objects are associated with positive memorable feelings of maternal comfort and affection in childhood, which translate into habits of eating for pleasure and sensual gratification. Furthermore, gender stereotyping of food reveals differentiated food norms between genders in which eating “masculine” foods confirms one’s identity and justifies poor eating habits. Research using the concept of “situational analysis” (which is rooted in symbolic interactionism) has explored the disclosure of eating disorders online and the fear, confrontation, and stigma involved (Williams et al. 2018). Research has also studied expert opinions on the efficacy of combining obesity and eating disorder prevention strategies to mitigate weight-related issues in schools (Ireland and Russell-Mayhew 2021). Additionally, researchers have used symbolic interactionism to examine the
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effects that nutritional food labeling has on people’s purchase intentions. For example, Teng et al. (2021) applied symbolic interactionism to nutrition labeling to explain how consumers perceive a sugary product when they are presented with different types of label combinations. Results showed that combined labels that provide sugar facts and daily amounts guidelines alongside traffic light displays reduced purchase intention of sugar-sweetened beverages. Scarcity issues related to poverty and homelessness and their effects on food insecurity, access to quality health care, and other hardships are also public health matters that symbolic interactionists research. Lile and MacTavish (2020) examined the experiences and perspectives of low-income, rural adolescents and their community supporters to understand how scarcity affects their lives. A symbolic interactionist lens was used in both the study design and data analysis to make sense of the constructed meanings and shared interpretations held by youth and adults in the community. Findings showed that there are significant obstacles faced by youth, such as mental health problems, homelessness, and school disruption, but also revealed positive self-affirmations of resilience, agency, and strength in sources of support from their communities. In a study conducted by Rosales (2015), symbolic interactionism provided a framework for examining how poor people in the town of Hagonoy, Philippines cope with poverty in their everyday life as they grapple with common issues of hunger, ill-health, and poor education. Data revealed that poor people suffer from stigmas associated with their impoverishment and employ various strategies for survival. Symbolic interactionism was also used by Daugherty et al. (2019) to examine the meanings three US college students attached to their experiences with food insecurity and food pantry usage. Findings revealed individual meaning attachments from each student in which the theme of budgeting uncovered respective meanings of negotiating, sacrificing, and resourcefulness, while the theme of food pantry use and strategies were described as a safety net, self-care, and a backup plan, respectively. The theme of “having enough” generated different meanings for each student in relation to their upbringings and their current financial situations. Interaction is the foundation on which symbolic interactionism makes its case, centering the creation and maintenance of society on the notion of repeated interactions among individuals. Understanding the dynamics of patient–provider interaction is a prime area for study among interactionist researchers. A study conducted by Skatvedt (2017) examined the interactions of Norwegian clients/patients in recovery for drug addiction and mental health issues with their providers to understand what people in their situation need from these encounters. Findings suggested that clients/ patients place great value on the simple idea of “being human together” with medical staff, highlighting the importance of everyday human interaction in making people feel normal. Informed by symbolic interactionism, Segaric and Hall (2015) introduced the concept of “progressively engaging” to explain how Canadian nurses, patients, and family members construct relationships in acute care settings where task management affects meaningful communication. Through focusing on tasks, getting acquainted, and building rapport, progressively engaging allows participants in care settings to develop understanding and a sense of connection with each other.
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However, the outcome of this process is influenced by interpersonal dynamics that may foster or hinder positive relationships and mutual understanding. In related research, Campbell et al. (2015) used a symbolic interaction framework to explore how cultural conceptions of “a good patient” influence the quality of interactions between patients in need of antiretroviral treatment for HIV and nurses in Zimbabwe. Patients who took on the good patient persona characterized by features such as obedience, patience, enthusiasm for treatment, physical cleanliness, and gratitude received better care from nurses while those who did not display such characteristics received harsh treatment or no care at all. Morales et al. (2018) used an interactionist perspective to understand the meaning that women in Columbia attribute to their interaction during labor. Findings suggested that unequal power relationships influenced by health care systems that prioritize care on the basis of patients’ buying power create interactions in which patients experience fear, discrimination, degradation, dehumanization, and lack of agency, or what is referred to as Obstetric Violence. Finally, the ongoing occurrence of the COVID-19 pandemic has brought with it many implications for public health and a myriad of issues related to the coronavirus. While ample research on the topic of COVID-19 is currently being carried out and will be for years to come, many studies have examined the contemporaneous effects of the pandemic on social life, including problems with messaging, the symbolic meanings behind masks, the political cleavages born out of individuals’ perceptions around the severity and management of the pandemic, the ramifications of social distancing and isolation on people’s well-being, as well as a variety of mental and physical concerns. A study conducted by Kenworthy et al. (2021) employed tenets of symbolic interactionism to understand the American political culture around the public health crises of the COVID-19 pandemic and the process of social sense making it prompted. Analysis of the symbolic representation of public health phenomena such as masks and public health institutions in the early days of the pandemic showed how political pandemic response scripts and partisan public health discourse are influenced by entrenched social values and political ideologies in which contested symbols signal different meanings for people and cultural scripts guide behavior linked to conflicting systems of belief. Morgan (2020) also explored meaning-making in relation to government response to the COVID-19 pandemic, but in the United Kingdom. Dramaturgical concepts like social drama, narratives, casting, and performance were used to show how meaning-making struggles impact political legitimacy, public behavior, and control over the spread of the virus. Interactionist studies on the relationship between stigma and COVID-19 show how early COVID-19 patients or those suspected to have the virus in India were insulted and discriminated against by family and community members, sometimes even resulting in suicide because of stigmatization (Sahoo and Patel 2021) as well as the mental health ramifications associated with stigma and discrimination in China (Fan et al. 2021). Additionally, symbolic interactionism has informed research on the negative impacts of social distancing and isolation on the well-being of Muslim communities in England (Hassan et al. 2021).
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Conclusion and Future Directions
This chapter has discussed various ways that scholars have applied symbolic interactionism to understand facets of public health. By using a variety of methods such as interviews, surveys, ethnographies, and narratives, scholars who apply the tenets of symbolic interactionism have provided a compelling understanding of issues that relate to global public health. The research summarized in this chapter illustrates the efficacy of the interactionist approach and shows the flexibility and applicability of the perspective overall. Symbolic interactionism continues to produce empirical research on public health that advances a greater understanding of public health and society as well as fruitful solutions and recommendations for policy change. And, it is likely that scholars who seek to understand how sickness and issues related to health impact individuals and greater communities will continue to look to symbolic interactionism to contextualize and understand health-related phenomena. Regarding future directions the perspective may take, while it is impossible to predict what course scholars will follow in their research endeavors, it is likely that much of the research that applies symbolic interactionism to public health issues will address facets of living in the era of COVID-19. Symbolic interactionism seems to be a perfect perspective to contextualize and frame the lived experiences of those who have been affected by the global coronavirus pandemic, and with so many affected, the application of interactionist theory and method will appeal to social scientists in many fields as they try and understand how people have negotiated and redefined the meanings of their changed lives. Living in the era of COVID-19 has created new norms, interaction patterns, and behavioral expectations (such as the wearing of masks, social distancing, and so on) – all of which are phenomena that sociologists and social scientists have traditionally used symbolic interactionism to explain and understand. So, while the future of symbolic interactionist research will likely address its usual wide variety of topics, it is almost a certainty that a glut of research will emerge in the coming years that applies interactionist ideas to understand the societal and social outcomes of the coronavirus pandemic. This chapter has discussed how symbolic interactionism has been used to understand issues related to global public health. The authors only cover a portion of the available research on symbolic interactionism and public health, but its usefulness as a research approach is clear. The summary of the perspective and review of the literature together illustrates how symbolic interactionism is an excellent tool for researchers and is well-suited for exploring user motivations, symbolic meanings, and identity formation as they relate to global public health.
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Cross-References
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Critical Theory Yvonne Parry
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Critical Theory and Its Essence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Critical Theory and Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Critical Theory and Global Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter illustrates the importance of critical theory in addressing the framing of social issues and the impact of these challenges on health outcomes. The use of critical theory here identifies the role of robust social critique in global health. Critical theory research constructs define abstractions such as power and affirm the impact of these characteristics on health. The interdisciplinary nature of critical theory is discussed, and several research projects are used as exemplars for the application of the theory. This demonstrates the utilization of multidisciplinary approaches to consider the roles of power and broader social structures in health and illness that predetermine health outcomes. Critical theory perspectives challenge the “accepted givens” within society, organizations, and institutions to provide alternative processes, polices, and structures to address the issues facing global health. Keywords
Critical theory · Theorical framework · Social science · Research methodologies
Y. Parry (*) College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia e-mail: yvonne.parry@flinders.edu.au © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_41
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Introduction
The ability to critique and examine responses to health and societal inequity goes well beyond the mere investigation of gaps in service provision. There is a dire need to answer questions related to the roles of social inclusion/exclusion, social/cultural determinants of health, and the functions of organizations, institutions, policy, and governments in the provision of health care. Critical theory provides a way of investigating, explaining, contesting, and acting upon social injustices (Unger et al. 2011; Watts and Hodgson 2019). To achieve this, critical theory seeks to understand the contemporary lived experiences of real people in the context in which they live and, to encompass oppression and discrimination within this critique (Schroeder and Hollister 2014). By combining the practical with theory, the critical theory addresses the interplay between varying perspectives to improve our collaborative understandings of society using transformative and reflective social inquiry (Bohman 2003). Critical theory philosophy and research practices have become foundational for many disciplines such as social sciences, psychology, education, international relations, and political science, to name a few (Schroeder and Hollister 2014) enabling an understanding of diverse perspectives (Agger 2006). The diversity of disciplinary foci allows for the conceptualization of knowledge in a manner that seeks to reveal the dynamics of power and domination within society (MacLean 2017). The influence of power and domination acts to reinforce discrimination and the exclusion of groups within populations. The critical theory attempts social inquiry in a manner that aims to increase freedom from domination and oppression by challenging the social norms that perpetuate the discriminatory aspects of human relations. Although the critical theory was written at the beginning of the twentieth century, and thus was configured at a specific point in time, its core concepts remain important to the emancipation of many groups globally. The critical theory maintains a critical lens on the totality of society, and it aimed at improving the understanding of society by integrating all the major social sciences, including geography, economics, sociology, history, political science, anthropology, and psychology. Critical theory provides insights into the issues people are facing that challenge the new social facts, the presumed “givens” that are presented as normative. Thus, the critical theory remains a vital philosophical tradition in normative disciplines of social and political philosophy. Furthermore, this vitality is enhanced when it considers a range of democratic claims not discussed here, all of which equally challenge the fundamental frameworks of conceptions of democracy, justice, and their interrelationship. These include the struggles of aboriginal peoples, people with disabilities, women, and more. One great advantage of the practical account is that it makes it easier to see why there are many different critical theories in different historical contexts, what Marx called the “wishes and struggles of the age.” On a practical account, critical inquiry aims at creating the reflective conditions necessary for the practical verification of its inquiry, and these conditions are not confined only to democratic institutions, but wherever the public employs critical social theories and methods as the moment of inquiry of their democratic politics.
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This chapter provides an overview of the concepts of critical theory that describe the historical development of critical theory and its focus on improving society using the integration of all major social sciences, including economics, geography, sociology, history, political science, anthropology, and psychology.
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Critical Theory and Its Essence
Critical theory inherently examines the development of knowledge to encompass the relationship of knowledge, knowledge making, and the pursuit of knowledge while situated within the political and social power dynamics and context. Therefore, critical theory explains society as a complex set of tensions, power dynamics, and negotiations that divides society just as norms, values, and ideologies seek to synthesize it (Bohman 2021). It focuses on critiquing and changing society as a whole. As a philosophical tradition, critical theory arose from Marxist theories and a group of sociologists from the University of Frankfurt in Germany. These sociologists include Theodor Adorno, Walter Benjamin, Erich Fromm, Max Horkheimer, and Herbert Marcuse (Bohman 2021). This group of sociologists concluded that societal structures and cultural assumptions not only influenced but also created social problems, rather than individual or psychological factors (Bohman 2021). Therefore, the main aim of critical theory is social transformation and emancipation through critique (Bohman 2021). The application of critical theory provides a practical theoretical framework to investigate complex human interactions through the assumed and often unchallenged “givens” within groups, communities, organizations, and society. The critical theory arose in the 1920s from the German philosophers and the previous social Marxist tradition of social sciences (Bohman 2021; Turetzky 1972). The theory’s origins sought to explain the circumstances that determine the enslavement of humans, especially within a democracy (Bohman 2021). The critical theory challenges the established “status quo” by revealing social understandings through the reviewing, analyzing, and critiquing of “normative” social relations, thus, liberating and transforming society (Bohman 2021). Sociologically, critical theory was founded on a body of work from the Frankfurt school of prominent thinkers such as Horkheimer and Adorno (Nickerson 2022). Their work, according to Brookfield (2014, p. 418), explored the three core assumptions of society and these were: (a) that apparently open, Western democracies are actually highly unequal societies in which economic inequity, racism, and class discrimination are empirical realties; (b) that the way this state of affairs is reproduced as seeming to be normal, natural and inevitable (thereby heading off potential challenges to the system) is through the dominant ideology; and (c) that critical theory attempts to understand this state of affairs as a prelude to changing it.
The identification of the predominant ideologies and the empirical exploration using a critical theory lens enables the researcher and philosopher to challenge the
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dominant ideology and the inequity of the normalized social structures. The critical theory acknowledges that society is a complex set of negotiations where the power dynamics and social tension divide society and ultimately inform the accepted norms and values (Nickerson 2022). The critical theory uses a humanistic lens to critique all given and established realities, knowledge, understandings, and explanations of social relations (Bohman 2021).
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Critical Theory and Research
The use of critical theory enables researchers to investigate the associations between constructs to determine the relationships between variables that capture human relations and the intersection of the power dynamic in society. The theory mediates scientific methods to provide different perspectives to inform social science research. Critical theorists combine philosophical and social explanations to inform social inquiry and analysis to advance the emancipation of repressed groups (Parry 2022; Bohman 2021). Critical theory reconciles scientific methods and understandings through a broadly humanistic rather than a naturalistic lens. Critical theory expands humanistic approaches to analyze, using critically robust strategies, to explore the structures in society that constrain human relations (Brookfield 2014). The critical theory allows for the analysis of social structures through the disentanglement of practices to reveal the underlying power dynamics and assumed givens in society (Brookfield 2014). For example, Brookfield (2014) identifies several constructs that inform the power dynamics within organizations and the social characteristics of modern capitalism to explain the “enactments of microaggression,” the “commodification of labour,” “the social character of capitalism,” and the “practice of repressive tolerance.” This critical analysis of workplace relations is achieved using critical theory methods to undertake data analysis that connects the theoretical and empirical realms (Bohman 2021). Critical theory provides a framework for understanding the workplace environment and the power dynamic entanglement in Human Resources (HR) management structures within organizations (Brookfield 2014). Critical theory as an overarching theory for several sociological theories can capture the minutia such as those in HR management structures and yet is able to investigate broader global concepts, for example, the aspects of global health. The critical theory involves critical thinking in relation to global health as Ingram (2018, p. 2) states while some conception of critical thinking is inherent to the creation of any systematic knowledge about the world, thinking critically also means taking power and politics into account; to approach global health critically is to appreciate that any analysis of global health takes place in the midst of power relations, power struggles, and political events. This is not to say that the world and knowledge about it are entirely determined by the distribution and deployment of power, or that everything can be reduced to politics.
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Therefore, the application of critical theory to practical research that aims to capture a broader understanding of the societal and political concepts that are influencing the sector or area of research is imperative when using a critical lens. When applying critical theory to research into health, healthcare provision, and health systems, the researcher must focus on the impact of society’s power structures and cultural influences that are outside the individual’s sphere of influence. The current “neoliberal” focus on individual behavioral changes and lifestyle fails to critique the societal structures and pressures that inhibit or prohibit changes to health access, health delivery, and true universal healthcare (Parry 2012). In research by Parry (2012), the provision of health services is constrained and mediated by powerful health professionals rather than directed by patient/client needs. Parry (2012) describes “incremental structural inertia,” which effectively undermines universal health care in Australia through minute changes to Medicare to benefit the powerful within the health sector and politics who decide where services are provided. For example, in lower Socio-Econonomic Status (SES) and high numbers of families with young children, the numbers of General Practitioners (GP) per head of population are less despite the greater need of young families in these areas. This is captured in the section below: Policy and power inform the provision of the numbers and types of services available. Further, power and policy have interacted over the past two decades to produce a concept termed here as ‘incremental structural inertia’. Incremental structural inertia describes the small, insignificant, policy and provision (structural) level changes that have occurred through a lack of appropriate government interventions necessary to meet the paediatric healthcare demands on the Australian health system. Incremental structural inertia has modified universal health access for children, leaving those families living in areas of high deprivation, with limited access to paediatric health services (Parry 2012, p. 249).
The distribution of medical services, for example, General Practitioner or community pediatricans based in an area is not determined by need but rather by the profession. The number of GP and specialist services in an area, in Australia, is based on feedback from the current GPs and specialists already working or having a practice in the area. Therefore, the current GPs and specialist services provided by medical staff can often, if they wish, prohibit the provision of new services through arrangements with Medicare that inhibit competition. Researchers in the area of domestic violence (DV) use critical theory to examine the response of a society to DV using the theoretical lens of anthropology and the role of women in society, sociology and culture, and political ideologies that impact women’s ability to be self-determining and treated with respect. Domestic violence is a serious global issue with 35% of women reporting having experienced intimate partner violence (IPV) and abuse (Phillips et al. 2015). Globally, it is noted that 38% of all murders of women and 6% of all male murders are a result of IPV (Phillips et al. 2015). The language used to describe DV and IPV often minimizes, belittles, and dismisses the impact and extent of this issue not only in Australia but also globally (Phillips et al. 2015). This in turn perpetuates the status quo that limits effective responses to violence.
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For example, research into the area of domestic violence (DV) illustrates that by directly addressing social structures, norms, and practices, changes can be made to address the acceptance of DV and gaps in service provision (Cannon et al. 2020). Forms of DV such as intimate partner violence (IPV) are mediated by culture and society by the acceptance of violence in relationships within society (Cannon et al. 2020). Cannon et al. (2020) also state that responses to DV are mediated by “colour blindness,” which results in responses being determined by the denominate white mediated power structure that determines what is DV and the “appropriateness” of support and service responses provided. Here, critical theory can investigate these responses by theoretically dismantling the impacts of culture and social power that influence DV response, demonstrating that DV responses remain, at times, embedded within society’s responses to the role of women. The research by Zannettino et al. (2018) investigated the barriers to access for older women leaving domestic violence (DV). The research used critical theory to investigate the availability of services, the responses to older women in DV, and gaps in service responses, and developed an action plan. The methods used examined the structures, norms, and practices involved in increasing violence toward women, including the dominant social norms that support rigid roles and stereotyping or condoning, excusing, or downplaying violence against women. These factors decrease older women’s accessing services. The diagram below, from the research by Zannettino et al. (2018), exemplifies the processes to enact change in service responses (Fig. 1). The use of a continuous cycle of mapping; networks, partner organization responses to older women in DV, intersectoral responses, reporting back to clients and service providers, and implementing strategies that address the social norms, constructs and funding responses aided new providing service linkages and integration of service responses demonstrated in this action research plan method (Zannettino et al. 2018). The research data collection used interviews with older women and focus groups of service providers who provided insights into the barriers for them leaving DV and the lack of support provided by services the older women believed were focused on young women with children (Zannettino et al. 2018). This research highlights barriers for older women leaving DV that are socially and politically constructed. For example, the funding of DV services is political as the numbers and focus of the service in decided by the political ideologies of the funders. This research challenges the divide between academic and theoretical understandings of social issues and applied research practices. Furthermore, the treatment of perpetrators of DV is also politically and socially constructed. As presented by Cannon et al. (2020, p. 123) below: critical race scholarship has shown that African Americans are more likely to be arrested and enter the criminal justice system than White people.
Thus, responses to DV require a critical theory method of enquiring if true change is to be achieved.
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Fig. 1 Improving responses to older women affected by domestic and family violence in Adelaide, South Australia: An Action Plan, Zannettino et al. (2018)
The critical theory uses abstract notions to describe societal relations and interactions to develop constructs that are related to one another. These constructs are tested by estimating the associations among the measured variables within the area of interest or sample. This operationalization of constructs enables measured variables to determine estimated empirical associations between the constructs. Using the Brookfield (2014) example above, critical theory was used to examine the impact of “workplace thinking” and capitalism, and its impact on workers. This is a critique of workplace culture and power relations (Brookfield 2014). For Brookfield (2014), the dominant ideology is disseminated through state loci such as schools, media, and cultural organizations that directly mediate the interactions within the workplace. Furthermore, as the “Marmot Review” (2010) illustrates, working conditions correlate with health outcomes and impact life expectancy and levels of ill health (Marmot et al. 2022). Additionally, the central role of social relations impacts health delivery and outcomes. As the research and work by Parry and Sivertsen (2021) (in their chapter) explains, the “foundational” causes of ill health, such as social exclusion and the social determinants of health, are often portrayed as “white noise” thus
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avoiding critique and allowing these concepts to go unchallenged thus cementing their existence in the accepted and every day. The investigation of global health inequities is facilitated using critical theory. The framework of identifying, challenging, and changing processes in health is to ensure equity is aided by critical theory. For example, Parry and Sivertsen (2021) describe the inequitable employment of female staff in the healthcare system. Female staff earns on average 10% less than their equivalent male counterparts (Parry and Sivertsen 2021). This systemic underpayment of female healthcare staff is endemic globally and supported by political and social structures (Parry and Sivertsen 2021). Women were on the frontline and central to the response to the global pandemic of COVID-19 and yet face systemic barriers to gender equity (UN ESC 2020). Of the world’s healthcare workers, women make up 70% subsequently placing them at risk of infection during COVID-19 (OECD 2020). The underpayment of women adds to the discrimination they face in the healthcare sector. The underpayment of female health workers is global and reflects the social and political constructs within societies that restrict the emancipation of women. Additionally, the burden of ill health globally is disproportionately prevalent among the marginalized and disadvantaged populations within a society (Parry and Sivertsen 2021). The impost of health inequities is situated as inevitable unless viewed from a critical theory lens. The critical theory identifies the underlying assumptions of society and “how things work” to enable a true understanding of the pervasive nature of ideological and societal structures. The global rise of homelessness among families, aged populations, First Nation populations, and rough sleepers contributes to the burden of disease (Parsell et al. 2020). The critical review of the impact of housing instability on children living in homelessness with their families found 22% of infants and children under 5 spend time being homeless (Parry et al. 2020a). Exposure of children to living in substandard housing, including living in cars, makeshift shelters such as sheds, and housing instability create lifelong disadvantages and ill health for children (Parry 2022). Marsh et al. (2019), in the UK, found one in ten children lives in overcrowding housing. The incidence of inadequate housing in turn creates pressure on health systems over the long term to meet the needs of growing children and the subsequent costs created by the accompanying ill health. The ideological shift of housing from a basic human need is facilitated by neoliberal housing market models that have created a deficit in housing affordability and provision (Parry 2022). The shift is supported by the “blaming” of families and other populations living in homelessness through the framing of the causes of homelessness such as “bad behaviour” and “irresponsible” life choices, punitive government measures, and noticeably absent policy responses (Pawson et al. 2018; Parsell et al. 2020). Using a critical theory lens, the role of government action or inaction and the media in framing the social and policy inactivity had seen minimal responses to homelessness outside a rental relief or support funding response. However, during COVID-19 homelessness was identified as a public emergency with countries spending many times more than the previous budget response:
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Canada (spending $157.5M), the US (spending $4B), the UK (spending GBP 3.2M), NZ ($107.6M), and Australia ($2296M) over and above the usual budget for accommodation for homeless populations (Parsell et al. 2020). This was to help mitigate the need to hospitalize those living in homelessness who were at 10 higher risk of adverse COVID-19 reactions and ill health (Parsell et al. 2020), placing more stress on the public health and hospital systems. This also illustrates that the previous health intervention for homeless populations did not adequately meet their needs (Parry et al. 2020a, b). Furthermore, health responses that directly service homeless populations need to go beyond the traditional health system service delivery (Parry et al. 2020b). The response to the homeless populations was in stark contrast to previous policy stagnation (Mason et al. 2020; Parsell et al. 2020). In total, the Australian Commonwealth Government spent $4.08B responding to homelessness through a variety of initiatives (Parsell et al. 2020). These examples highlight the role of investigating and responding to social issues outside the accepted norm of health and medical care functions using critical theory. Critical theory provides a framework for the integration of philosophical and the dominant ideological underlying premises of society into a research process. This is achieved using operationalized constructs and the estimations of the relations between the constructs. The findings from the associations are used to make inferences regarding the probable relationships among the contracts within a population. For example, research by Sivertsen et al. (2019) concludes that the exclusion of culturally appropriate and sensitive mainstream health services responses continues the embedded racism and discrimination responses that ultimately compound the First Nations poorer health outcomes in Australia. This situation along with the globalization of health systems has extenuated the deterioration of the health systems in their ability to respond to its citizens (Popay et al. 2008; Parry 2012; Sakellariou and Rotarou 2017).
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Critical Theory and Global Health
Global health seeks to provide effective, practical, and affordable solutions to global health issues (Adams 2018). The premise of universality, equity, and fairness are the foundations of global health (Adams 2018). The use of critical theory in understanding and researching global health is important as it provides a means to transform global public health policy and practices to meet the needs of the excluded or marginalized. Adam’s (2018) critique of the responses to the rabies outbreak in Venezuela highlights the importance of disentanglement from the collective narratives that can impede diagnosis and responses to global health issues. The role of power, inequities, and the perspectives of those creating the norms of global health requires critical social examination if the change is to occur (Ellingson 2019). Even the determination of those who are ill, their access to care, and the services provided
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is central to the provision of interventions and access (Parry 2012). For example, the work of Marmot et al. (2022) has highlighted the significance of examining the causes of ill health across different strata of society and addressing these social determinants of health (SDH). The SDH often identifies aspects of society that reinforce inclusion and exclusion to health (Parry and Sivertsen 2021). These SDH factors identify areas to be addressed by research. The use of critical theory goes beyond identification to analyze the normalizing discourse that actively discriminates against groups. Health provision is often mediated by socialized views of normal (Ellingson 2019). This acts to exclude those who do not for whatever reason fit the societal definition of normal or worthy of health access (Ellingson 2019). Research by Parry et al. (2020a, b) illustrates the exclusion of children and families from usual health services, in Australia, due to their housing status. Comparison by Platt et al. (2022) of those living in temporary housing, hotels, and rough sleepers found only 46% had received their second dose. Whereas up to 75% of the UK population not in this group, over 18 years, had received both doses. The inability of conventional health services delivery systems to provide pandemic vaccination regimes to marginalized and excluded groups is not only concerning but also inevitable and requires immediate action to address. This illustrates the role of critical theory in identifying those within democracies and in countries with universal healthcare systems that are marginalized and excluded. Furthermore, Mason et al. (2020) illustrate the significant impact housing policy and ideology has on health outcomes. How researchers and practitioners discuss, characterize, and portray individuals, families, and groups, such as homeless populations, directly influences the provision of policy initiatives to address homelessness and health interventions (Mason et al. 2020; Parry et al. 2020a; Platt et al. 2022). The critical theory allows the investigations of global health to be theoryorientated and evidenced-based (Kleinman 2010), allowing the generalization of findings within the global health discipline (Kleinman 2010). According to Kleinman (2010, p. 21), “global health is filled with illustrations of unintended effects.” However, timely and robust investigations into the health practitioner/ medical officer and patient interactions are viewed now as necessary to ensure medical practice is advanced (Kleinman 2010). Critical theory provides the framework that supports the crucial analysis of global health (Ingram 2018). The critical theory allows for the embodiment of human experiences of health and subsequent health outcomes (Ellingson 2019). Ellingson (2019) describes the application of critical theory to communications in healthcare that capture the embedded experiences of the clients of the health system. For example, who decides whose bodies are healthy and whose are not, is influenced by cultural and social perspectives (Ellingson 2019). The perspectives of those whose who are situated within a health system or society as normative are counted toward health, healthy and normal (Ellingson 2019). Conversely, those whose bodies, and health status are considered outside of the normalized perspective are stigmatized, and marginalized and this impacts the treatment provided, the health system response, and the funding of research for cures (Ellingson 2019; Solomon 2016). For example, the condition
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recognized as myalgic encephalomyelitis (ME) is commonly referred to as chronic fatigue (Solomon 2016). As Solomon (2016, p. 3) asserts Labelling ME as chronic fatigue syndrome gives doctors, the media, the public, and even family members permission to assume individuals are exaggerating, that we’re simply refusing to pull it together.
The stigmatization of this condition and the relabeling of ME as chronic fatigue has decreased funding and limited WHO action on researching the condition despite there being more than 24 million people with the condition globally (Solomon 2016). Another example is the response to an individual’s drug addiction viewed in some countries as requiring a criminal response whereas other countries view individual drug addiction with a harm minimalization lens (Ellingson 2019). Furthermore, McArthur (2021) asserts that critical theory is written within the context of the Global North and, therefore, reflects the perspective of the social, political, and health structure from that lens. That said McArthur (2021, p. 2) argues that: Critical theory need not be seen as a canonical set of ideas from times past, but rather as an ongoing project and commitment. At its core, critical theory rejects the instrumental rationalism of late capitalism and highlights hidden and subtle distortions and pathologies that impair our ability to lead fulfilling, social lives.
Brookfield (2014), McArthur (2021), and Shiffman (2014) use a systematic analysis and critique of power relations. This can be applied in global health to address failures of global health. These critiques provide tools that can provide insights into the limitations of global health and its applications. For example, global health priorities are determined by a few (Shiffman 2014). Therefore, a small group of individuals determines the focus of global health agendas and priorities. As stated previously, what is normative, funded, and researched is determined by the agendas of those making the decisions rather than the needs of populations especially those who are marginalized. Shiffman (2014, p. 297) found: We commonly recognize an attempt to exert it [power over global health] when a pharmaceutical company insists it will invest in a country only if the government alters patent protection laws, when the World Bank demands as a loan condition that a borrowing government undertakes major health sector reforms, and when a bilateral donor allocates health aid according to its geopolitical interests rather than humanitarian need.
This type of influence on global health is overt and recognizable and impacts directly the provision of global health and demonstrates the power of the influences involved. However, when reviewing aspects of global health for covert influences, the pathways and determinations can be opaque. An example is the Millennium Development Goals developed by the WHO. Of note, only four of the WHO
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Millennium Development Goals are population health-related (child and maternal health) whereas six focus on diseases (such as HIV). The focus on medical models of health and health interventions reflects the Global North agenda rather than the health needs of the population.
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Conclusion and Future Directions
The ability of the critical theory to challenge the pretext of mass culture and ideologies that perpetuate discrimination using empirical measures ensures it is a practical theory applicated to addressing global health issues. Critical theory is often toted as a form of enlightenment capable of analyzing health through critiquing and addressing the political, economic, and societal roots of inequity. The exploration and understanding of the role of power and human relations are central to the application of critical theory to the investigation of global health. This includes qualitative evidence such as the research into the lived experiences in the areas of DV and homelessness and the impact of structural, social, and political barriers. For example, the barriers experienced by older women and aboriginal people are illustrated above. The vitality of critical theory is maintained through its ability to illuminate the lives of those impacted by discrimination and through research findings from individuals and groups to provide the lived experience and provide a voice to those who are stigmatized and marginalized, thus providing the ability to change concepts and responses to populations. Critical theory remains an important philosophy and research practice suitable in many disciplines such as social sciences, psychology, education, international relations, political science, communication, and HR as it enables an in-depth understanding of diverse perspectives and the impacts of power, power relations, and the powerful in determining the aspects of care that are privileged in global health. Going forward critical theory is more relevant now and in the future, as it encompasses the diversity of disciplinary foci to capture the conceptualization of knowledge in a manner that seeks to reveal the dynamics of power and domination within society. The overt and covert influences of power and domination act to reinforce discrimination and the exclusion of groups within populations. For example, the continued identification of groups missed in the recent pandemic and the lack of universal access to immunizations is one example of the need for critical theory to change current health practices and reflect on discriminatory practices and policies. Therefore, critical theory aids social inquiry in a manner that aims to increase freedom from domination and oppression by challenging the social norms that perpetuate the discriminatory aspects of human relations. This is more important than ever before especially when considering the normative practices and philosophies that minimize inclusion in modern democracies. Thus, critical theory and its core concepts remain important to the emancipation of many groups globally. Critical theory maintains a critical lens on the totality of society, and it aimed at
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improving the understanding of society by integrating all the major social sciences, including geography, economics, sociology, history, political science, anthropology, and psychology.
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Cross-References
▶ Social Science Research and Sickle Cell Disorders ▶ The Role of Social Science in Behavior Addiction ▶ The Role of Social Science in Conflict Situations
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Feminist Methodology Vuyolwethu Ncube and Sarah Day
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Feminist Methods and Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Feminist Quantitative Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Oral History Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 Digital Storytelling . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Photovoice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 Critical Ethnography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Feminist methodology, underpinned by the values of gender and gender equality, the subjectivity of participants, action, critique of research, and participatory methods, offers public health a lens to examine and address how gender and other power dynamics impact upon the social distribution of health and illness. Feminist methods prioritize intersectionality and in doing so highlight the multiple axes that intersect in public health research including gender, race, ethnicity, class, and sexuality. This chapter draws on seven feminist research methods, namely, the feminist quantitative method; oral history methods, which include storytelling, life story research, narrative inquiry, and digital storytelling; V. Ncube The Aurum Institute, Johannesburg, South Africa Psychology Department, School of Human and Community Development, Faculty of Humanities, University of the Witwatersrand, Johannesburg, South Africa e-mail: [email protected] S. Day (*) Division of Social and Behavioural Sciences, School of Public Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_42
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photovoice; and critical ethnography. Incorporating feminist methodologies into public health research has the potential to attend to the gendered health, socioeconomic, and human rights implications of global public health crises through promoting social justice, privileging marginalized voices, addressing gender data gaps, and critically examining gender-blind public health responses. Feminist methodologies can offer public health theoretically plural approaches and multidisciplinary activities to address power imbalances, reveal health disparities, catalyze social change, and center the experiences of women and other vulnerable populations. This chapter demonstrates that feminist methods can offer public health gender-conscious and intersectional approaches to surveillance, identification of risk and protective factors, intervention evaluation, and implementation that move toward addressing underlying health inequalities and (re)imagining equitable healthcare. Keywords
Feminist methods · Public health · Research methods · Gender equality · Genderconscious healthcare
1
Introduction
The production of knowledge in public health is shaped by the epistemological and theoretical frameworks that guide data collection, analysis, intervention design, and implementation (Zierler and Krieger 1997). While the role of public health is to protect and promote the health of the whole population (Rogers 2006), the voices of marginalized communities are commonly left out of the process of research, program delivery, and monitoring and evaluation (Gubrium and Turner 2011). Epistemological frameworks and emancipatory methods that center the voices of marginalized communities have the potential to create public health interventions that are contextsensitive and relevant. In the 1960s and 1970s, a women’s health movement, which was embedded within the second wave of feminism, illuminated the position of the women’s body within conceptions of health and well-being in relation to male dominance, that is, women’s bodies within the health sector were differentially treated in ways that uphold broader patriarchal systems and produced worse health outcomes for women (Shai et al. 2021). Davies et al. (2019) argue that global health policy and programs still neglect to sufficiently consider gender inequality and render women and other gender minorities invisible. Power relations have tangible impacts on “living, breathing, feeling bodies” within the global public health sector (Scott-Dixon 2009). That is, the absence or presence of health and well-being can be one of the most “intimate” personal experiences an individual or community can have (Scott-Dixon 2009). Considering this, public health is one space in which the most substantive and tangible impacts can be made on individuals and communities (Scott-Dixon 2009). Feminist methodology critically examines traditional research and expands the lens through which public health can be viewed (Gubrium and Turner 2011). That is, positivism is often viewed as the gold standard of knowledge production. Davies et al.
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(2019) argue that while positivist methods are important to capture information about participation, membership quotas, and voting cleavages within global public health programs regarding gender, this approach does not sufficiently capture and elaborate upon complex and nuanced realities around gender, socioeconomic disadvantage and patriarchal structures embedded within public health processes. Unlike positivism, feminist methods offer multiple theoretical and practical understandings of a public health issue (Scott-Dixon 2009). Feminist methods, therefore, are also able to critically examine, elaborate on, and expose false assumptions of traditional research methods (Davies et al. 2019). Embedded within a social justice perspective, feminist research methods provide a comprehensive toolbox that incorporates multiple perspectives, conceptual frameworks, methods, processes, and practices (Scott-Dixon 2009). Feminist methodology, underpinned by the values of gender and gender equality, offers public health multiple lenses to examine and address how gender and other power dynamics impact the social distribution of health and illness (Davies et al. 2019). That is, fundamentally, feminist research aims to dismantle structural and social power, and remedy inequalities within society that (re)produce health and social inequalities that disadvantage women and other gender minorities. Taking this perspective, public health crises are viewed as embedded and emerging from the unequal distribution of power and privilege (Scott-Dixon 2009). Furthermore, feminist research methods can be particularly useful in addressing issues of substantive representation, which is the tendency for those in power to only advocate for certain groups, in the global health movement (Davies et al. 2019). That is, through the use of feminist methods, public health researchers and practitioners can advocate for the consideration of women and other gender minorities within the public health space. Feminist research methods are generally collaborative and include trans/feminist researchers, community workers, writers, political organizers, and community representatives (Scott-Dixon 2009). Feminist methods prioritize intersectionality and in doing so highlight the multiple axes that intersect in public health research including gender, race, ethnicity, class, and sexuality. These methods not only consider gender but also center many different axes of vulnerability. Adopting a feminist perspective in public health recognizes that the individual is embedded within broader social relations (ScottDixon 2009). This approach centers the individuals and communities’ lived experiences within a variety of contexts as opposed to controlling for different contexts and dislocating the individual from the social relations in which they are embedded (Gubrium and Turner 2011). That is, women and other gender minorities’ lived experiences are not homogenous and intersect with other social determinants of health and drivers of inequality which can limit or enable access to health care (Davies et al. 2019). Indeed, feminist research methods call for public health approaches to be intersectional in all aspects, including research design (e.g., how data that meaningfully considers and maps inequality is collected), program delivery (e.g., how interventions to the needs of particular populations and contexts are tailored), monitoring and evaluation (e.g., how the impact of the programs on marginalized populations are measured), and implementation (e.g., how the research design and program delivery is actually implemented within a context) (Davies et al. 2019). An intersectional approach critically appraises who benefits from the
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intervention and who is disadvantaged. Taking an intersectional approach to global public health research, programs, and decision-making means paying careful attention to who is included and whose voices are heard (Davies et al. 2019). Considering the above, the inclusion of feminist research methodologies, such as participatory action research, digital storytelling, body mapping, critical ethnography, and feminist quantitative methods, draws lines of collaboration and partnership with minority, marginalized, and Indigenous communities (Davies et al. 2019). An important component of ensuring the inclusion of multiple and representative voices within public health, Davies et al. (2019) argue, is that it is imperative to uncover silences and exclusions by consciously looking for excluded voices, the barriers to inclusion, and the different methodologies that can reveal these exclusions. Gender inequality is often relegated to the so-called private realm; however, this artificial binary fails to acknowledge the intersection and interconnectedness of the private and public spheres. In order to expose, elucidate, and address the often hidden, subtle, and normalized experiences of inequality, diverse methods are needed (Davies et al. 2019). Inclusion and representation are embedded within public health practitioners’ ability, to engage with processes critically and reflexively to meaningfully uncover how voices may purposefully and incidentally be excluded. The principles and tenets of public health are compatible with feminist methods. Public health is based on four core principles. The first of these is surveillance which tracks the trend, scope, and pattern of the problems. The second principle is the identification of risk and protective factors. This questions what influences the likelihood and occurrence of health problems. The third principle is intervention evaluation which examines what works and what does not work. Finally, the fourth principle looks at the implementation and examines the best practices on how to intervene successfully (Satcher and Higginbotham 2008). To fulfill these principles and implement successful interventions, five further tenets of public health should be adhered to. These include equity, fairness and inclusivity, empowerment, effectiveness, and evidence-based practice. Feminist methods mirror the stated principles and tenets, and the integration of feminist methodology into public health offers a set of approaches and methods that by their very nature and purpose fulfill the principles and tenets of public health research. Traditionally, one goal within public health has been to impart knowledge to affect behavioral change, such as the Health Belief and Transtheoretical models (Gubrium and Turner 2011). These models, although critiqued as flawed in their understanding of social phenomena (Buchanan 1994), still guide public health research and intervention development (Gubrium and Turner 2011). Furthermore, while mainstream public health approaches may recognize that health and wellbeing shape the lived reality of individuals and communities, scholarship predominantly focuses on risk factors and views populations as contextually dislocated individual bodies with malleable thoughts and behaviors that are disconnected from broader structural and institutional power relations (Scott-Dixon 2009). Feminist approaches critique the predominant public health frameworks and state that imparting knowledge without a nuanced understanding of the context in which knowledge is produced and validated will fail to create meaningful public health interventions and programs that benefit the communities for which they are intended (Abrums 2000; Banks-Wallace 2000).
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Feminist public health approaches that draw on theoretical and methodological foundations which are materialist and antiracist allow for practitioners not only to retain gender as a central organizing concept, but also invite us to think about public health at multiple and intersecting experiences, such as complex physical identities, individual well-being, corporal realities, environments, institutions, and state structures (Scott-Dixon 2009). The incorporation of multiple tools, methods, approaches, theories, and strategies adopted from multiple disciplines allows us to situate health, embodiment, and care within their social and political contexts and orientate public health as a social justice project (Scott-Dixon 2009). That is a move away from viewing public health as a set of individual attributes or the absence of disease. This chapter exemplifies the links that exist between the principles of the public health approach, the tenets of public health, and feminist research principles. This will be shown through the discussion of seven feminist methods. The discussions to follow will define each method, identify its importance as a research method in public health, link the method to public health principles, and finally discuss how this link moves public health research and implementation forward.
2
Feminist Methods and Public Health
This section discusses seven feminist methods, how they link to principles of the public health approach, the tenets of public health, and feminist research principles. These methods include the feminist quantitative method; oral history methods, which include storytelling, life story research, narrative inquiry, and digital storytelling; photovoice; and critical ethnography. The below methods are not all-encompassing but offer nodes to discuss how different feminist methodologies can be employed to do public health work.
2.1
Feminist Quantitative Method
Global health policy and programs, according to Davies et al. (2019), have been reported to be blind to the disparities between women and men’s needs (gender equity), and to women’s unequal position in society (gender equality), and this has resulted in women becoming visibly invisible. This is argued to be due to the reliance on positivist research methods that strive for generalizability and are not sensitive to elucidating the nuances between data from men and data from women. Davies et al. (2019) argue that global health must take an intersectional approach across all levels, namely, research, program delivery, and implementation. This assertion does not deny the importance of quantitative methods in totality but rather argues that quantitative data must be culturally sensitive and contextually aware (Westmarland 2001). Incorporating the context and culture merges the data, the sample, and the interventions that are designed and implemented. Feminist quantitative data in response to this data inequality defines gender data as statistics that are gender sensitive and gender aware. Feminist quantitative data actively challenges the traditional methods of quantitative research that have arguably
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been classified as masculine because of their detached and so-called “objective” approach (Westmarland 2001). This method refocuses the purpose of the research – to gain a fuller understanding of a phenomenon – through the provision and exploration of statistics that are often overlooked or collapsed into categories and, resultantly, lose gendered nuance. This method aims to adequately reflect the diversity of women and men, capturing all aspects of their lives and revealing the intersectionality of individual and contextual factors, a key feature that is absent in traditional quantitative approaches due to the collapsing of the intersecting data into general categories (data2x 2022). However, it is noted that feminist quantitative data has predominantly been conceptualized in terms of the gender binary, which loses the nuance of other gender minorities. This again challenges practitioners to (re)focus on the research design and data collection tools that should be designed with the awareness of genders that exist outside of the binary. To illustrate how the method can offer a greater and granular understanding of public health issues, Scott and Siltanen (2016) reveal how a traditional quantitative analysis, multiple regression, could be useful to study the convergence of variables – intersectionality. Drawing on feminist conceptualizations of intersectionality and applying the regression analysis, the authors were able to identify three criteria that appear in both the qualitative and quantitative schools of thought. These were the significance of context, a heuristic orientation, and embracing the complexity of the multidimensional structuring of inequality (Scott and Siltanen 2016). These three features were found using a three-way interaction in multiple regression. This application reveals that feminist quantitative data has great utility in the provision of data that explores and bridges the gender gap that is present in traditional quantitative data. Feminist data is, therefore, equitable, effective, and responsive, which provides a large evidence base for best practices and interventions (data2x 2022). Feminist quantitative data can be utilized as an effective tool for tracking and driving progress. Unfortunately, the use of feminist quantitative data is not always prioritized by global leaders, which leads to gender data gaps that can exacerbate inequalities. Therefore, the authors of this chapter argue that feminist quantitative data should be integrated with other methods to offer a fuller understanding of the larger picture of global health. Using feminist data, researchers are better able to adhere to the public health principle of surveillance. That is, they can track trends, scope, and patterns of problems that directly relate to women and other gender minorities. They are also able to examine risk and protective factors that account for gender differences. Researchers are, then, able to generate understanding of public health problems that take into consideration the differentiated impact across genders – while also considering other intersections of identity – and design and implement interventions that are context and gender-specific.
2.2
Oral History Methods
The move from quantitative “masculine” data to a more feminist approach to research resulted in the embrace of oral accounts as methods for research inquiry. Sangster (1994) mentions that the turn to oral accounts was seen as a means of
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integrating women and putting their voices at the center. This was seen not only as a method to explore overlooked topics but as a potential method to use in conducting research situated in a feminist approach. In the section to follow, four storytelling methods are outlined – life story research, storytelling, narrative inquiry, and digital storytelling. These four methods are underpinned by the same bedrock of integrating women into research and contesting narratives and discourses (Sangster 1994). Each method holds promise for moving public health forward.
2.2.1 Storytelling Storytelling is defined as the use of a story to make sense of an individual’s thoughts, experiences, beliefs, and values. McCall et al. (2019) define a story as a recollection of events that have a beginning, a middle, and an end. Stories also have a protagonist (often human), an object, a practice, or an idea, followed by a form of transformation or conflict. Stories are important as they shape and characterize the ways in which individuals interact with people, society, and information (Sangster 1994). The process of storytelling has various research aims. It allows the researcher to garner information and can be cathartic for the storyteller and those hearing the story. It can also be used as an intervention to facilitate a process of reworking knowledge and reflection in the research participant. Storytelling is important to feminist methods as it prioritizes the story the participants tell. This is important as it provides an understanding that can be used by public health practitioners to change knowledge, attitudes, and behaviors (McCall et al. 2019). This relies on the prioritization and centering of the participant’s stories and can especially be implemented in the area of disease prevention (McCall et al. 2019). Storytelling can be used to gain insight into perceptions and to share information that could influence changed behavior (McCall et al. 2019). Storytelling privileges the experience of the women and influences subsequent intervention strategies that are designed and implemented. 2.2.2 Life Story Research Life story research is the description of an individual’s life (Lemley and Mitchell 2012). The goal of life story research is to provide rich descriptions and analyses of critical periods and occurrences in an individual’s life (Harrison 2009; Winston 2012). It allows the researcher to explore the individual’s experiences at the microhistorical (the personal level) and at the macrohistorical (within the history of time) level (Lemley and Mitchell 2012). Winston (2012) expresses that the analysis of life story research is to interpret the meaning of the individual’s life. The life story interview begins with an initial request for the participant to describe the most important events that have happened in their life (Lemley and Mitchell 2012). This recollection maps out the participant’s life as chapters in a book that the researcher can then probe for information on more crucial and critical episodes that stand out to the participant (Lind et al. 2020; Winston 2012). The information that is gleaned from life story research challenges the researcher to understand current decisions, attitudes, and behaviors and through the story trace how they were made and influenced at another place or time – these critical and crucial episodes (Lind et al. 2020).
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Life story research focuses on the collective experiences of a person, including contextually embedded critical moments that have shaped their personhood. In the context of the Covid-19 pandemic, life story research was used to explore the unexpected resilience of older people (Lind et al. 2020). The prediction that the lockdowns, pandemic, and the disease would be especially medically and socially difficult for older people was challenged when older people instead were resilient to the pandemic (Lind et al. 2020). The results from a study in the United States of America found that this resilience was a result of crucial prior events (surviving the various World Wars) that, like the pandemic, called for the strength of body and mind (Lind et al. 2020). The use of life story research in this study allowed researchers to expand beyond the “snapshot” that an interview may have provided historical context and understanding of the phenomenon. This is important to feminist research as it explores the full human experience, and voices and scenarios usually seen as mundane can be explored to fully understand a phenomenon. This is invaluable in giving context and meaning to social phenomena that cannot be understood without the history of the person. Life story research is important in public health as it provides context to health behaviors and outcomes (Lind et al. 2020). Sangster (1994) argues that the influences of gender, class, economic status, and political context can be revealed in life story interviews as the underlying reasons for certain episodes in an individual’s life unfolding in the manner that they have. The life story that has been elicited and written explains a social and health outcome more so than the merely biological and social aspects. Through drawing on life story research, researchers can generate a complex understanding of risk and protective factors throughout the life span and develop, implement, and evaluate public health interventions that are individual and context-specific.
2.2.3 Narrative Inquiry Narrative inquiry is a qualitative research methodology that critically analyses social and cultural contexts of human experience (Webster and Mertova 2007). Narrative inquiry records human experience through the construction and reconstruction of personal stories by the participants, and therefore it is well suited to addressing complex, cultural, and human-centered issues due to its capacity to record and retell moments that are important (Webster and Mertova 2007). A critical event approach to narrative inquiry focuses on what the research participant identifies as important in the story (Lemley and Mitchell 2012). Narrative inquiry is especially useful in helping researchers to more richly capture how people make sense of their experiences. It focuses on the “thinking through” of events and experiences (Gubrium and Turner 2011). People make sense of their lives according to the narratives available to them. Narratives are constantly being restructured in light of new events and new social, cultural, and economic factors. This occurs as stories do not exist in a vacuum but rather are shaped by lifelong personal and community narratives. Narrative inquiry allows researchers to present experience holistically in all its complexity and richness. Narrative inquiry illustrates the temporal notion of experience, recognizing that one’s understanding of people and events changes (Webster and Mertova 2007). Narrative inquiry privileges “internalised soliloquies” (Webster and Mertova
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2007). The plight of being a woman or part of an under-researched group consists of stories that are lived internally and usually not the unit of analysis. When traditional interviews or questionnaires are conducted, they unfold in a controlled manner that categories experiences. This is directly opposed to the narrative inquiry that positions each experience in context and in the broader narrative that is being told. Larkey and Hecht (2010) argue that narratives shape health behavior, interventions, and health promotion. Moreover, they can tap the social context or culture in which this construction takes place. Hampton (2004) reported that socially disadvantaged or culturally diverse communities often have no access, or at best restricted access to decision-making processes. Their experiences that are paramount to their health behaviors are excluded from the narrative, and therefore, the interventions that are developed are out of touch and irrelevant. It is therefore important that public participation methods employed with such groups accommodate (rather than marginalize) their cultural and social needs and enable their full participation fully in the discussion of an issue. Narrative inquiry can be used to affect public policy through its inclusion as a recognized method in the public health sphere (Hampton 2004). This type of inquiry allows for the expression of values and goals, retention of the context, catering to cultural diversity, and transformative action (Hampton 2004). These values mirror three principles of public health, namely, fairness and inclusivity, empowerment, and evidence-based practice, and reflect utility in public health research.
2.3
Digital Storytelling
Digital storytelling is a process-based research method that uses multimedia tools to bring narratives to life. These tools include digital images, audio recordings of a firstperson-told story, music, and textual representation of personal experiences (StoryCenter 2022). The narratives that are generated comprise 1 to 3-minute personal visual narratives that synthesize and document personal experiences (Gubrium et al. 2016; Gubrium and Turner 2011). Digital storytelling consists of a personal, comediated, and group process. The personal process, according to Gubrium et al. (2016), details the participant writing a story about a moment that is important to them. The participant also finds multimedia (pictures and videos) to narrate their story. The comediated process includes the researcher and the participants and details a process of the researcher aiding the participant in creating the digital story to achieve two objectives: to accurately represent the participant’s story and to ensure that the research question that was initially posed is answered. The final process consists of the entire group of participants screening their stories with one another and the researchers (Gubrium et al. 2016; StoryCenter 2022). Digital storytelling is an important method for health promotion (Cueva et al. 2013; StoryCenter 2022). Digital storytelling takes the participant’s values into consideration, an important principle of evidence-based practice (Gubrium et al. 2016). With the participants’ values at the core, there is a greater understanding of the health issue and the digital stories that are created reveal and prioritize the truth, sense-making, support, and value that the participants feel (Gubrium et al. 2016; Hieftje
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et al. 2014). This allows for effective health promotion to occur, and through this, appropriate and acceptable health interventions can be designed and implemented. Digital storytelling also reduces the power differential between the researcher and participant, an important feature of both the feminist methodology and public health approach (Webb et al. 2002). This allows for the rethinking of the processes involved when interventions are developed. In contrast to top-down interventions developed by policymakers, academics, and public health practitioners, digital storytelling allows participants to construct and represent their own experiences (Gubrium and Turner 2011; Webb et al. 2002). This is achieved through the empowerment that takes place as the participants learn to make a digital story but most importantly because it occurs through the inclusion of each participant’s input and experience in the collective project. The digital stories are, therefore, not only relevant to the participants but also culturally and contextually sensitive (Cueva et al. 2013; Gubrium et al. 2016). These instances of empowerment and inclusion result in the designing of interventions that are largely based on the experiences of the participants (Hieftje et al. 2014). Digital storytelling, therefore, reflects a method that can be used as a form of health promotion and an inclusive participatory research method. In the field of public health, this provides information on intervention, evaluation, implementation, and risk and protective factors. This allows the participants and community members to be instrumental in various facets of their health and the interventions implemented to promote optimum health.
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Photovoice
Photovoice is a participatory action research approach, which is informed by health promotion principles, feminist theory, education for critical consciousness, and nontraditional approaches to document photography (Wang 1999). Photovoice builds on Freire’s (2000) work on empowerment education, that is, one of the main foundational blocks of photovoice is the acquisition of knowledge that is collectively and collaboratively produced by the participants. Indeed, photovoice centers the voice of the participants. Through drawing on feminist theory, photovoice is designed to center the knowledge and practice of marginalized populations and recognizes that interventions cannot simply be imposed from the outside (Budig et al. 2018). That is, communities that are affected by public health crises are often those who possess the knowledge and understanding required to address problems within their communities. This approach, according to Wang (1999), has three goals: recording and reflecting on personal and community issues and strengths; fostering critical dialogue around the community and personal concerns in relation to the photographs; and engagement with policymakers. The process involves focus-group discussions (FGDs), photography, and a photo exhibition for key stakeholders. After recruiting participants, the next step is to hold a group dialogue to introduce the photovoice methodology to the participants, speak to issues of power and photography ethics, and talk about the risks involved with Photovoice and how to minimize them. The topic is introduced to the participants –
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in the initial group, dialogue and the theme of the photographs is critically discussed (see Wang 1999). Participants are then trained in photography and given cameras (disposable or otherwise). Participants are given a predetermined amount of time to take photographs. The next two stages, 1) selecting photographs, and 2) storytelling and contextualizing, are undertaken in an individual interview context (Wang 1999). Participants are invited to select a set number of photographs that they consider as a best representative of the photo theme. In this photo elicitation interview, participants develop narratives on each selected photograph. The next stage, codifying themes, is done in the context of group dialogue. The contextualizing and storytelling stage allows the participants to frame stories about their photographs and take a critical stance toward them. This involves the participant being asked what they can see in the photograph; examining what is really happening in the photograph; considering how it relates to their own lives; reflecting on why the issue, strength, or concern exists; and questioning what can be done about it (Wang 1999). Once this is complete, the participants and the researcher plan a photo exhibition to exhibit the photo stories (Wang 1999). Community members and organizations, and relevant stakeholders who have the power and resources to effect and facilitate change for the community, such as policymakers and the media, are invited to the photo exhibition. Since its development, photovoice – as a participatory research method – has received substantial attention as an important methodological tool within the field of health and has been used across many different fields of study within public health (Catalani and Minkler 2010). It is apparent in Catalani and Minkler’s (2010) systematic review that photovoice is an adaptive tool that has been used in public health research and interventions as it can be adapted and applied in diverse contexts, various partnerships, different types of participants, and research or intervention areas. Furthermore, they argue that community collaboration across all phases of the method increases the success and validity of the research or intervention. However, the level of community collaboration can be adapted across all phases of the project to suit the researchers and community’s needs. Finally, they argue that photovoice is an important tool in fostering community agency and action toward better health outcomes. Therefore, photovoice is an effective methodology to bring together communities, researchers, policymakers, and other stakeholders to collaboratively address public health issues while also effectively fostering community agency and leadership (Finholt et al. 2010).
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Critical Ethnography
Mainly located within Marxism or neo-Marxist critical theory, critical ethnography emerged in the 1960s (Georgiou et al. 1996). Later, as social movements focusing on broader questions of inequality emerged, the theoretical underpinnings of critical ethnography expanded (Foley et al. 2001; Levinson and Hollands 1995; Villenas and Foley 2002). Specifically, there was a move away from positivist notions of objective, value-free ethnographers, and an active movement toward social justice (Foley and Valenzuela 2005). Critical ethnography takes an activist stance on ethnographic
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research (Soyini Madison 2012), where the research space becomes an arena for political activation (Foley and Valenzuela 2005). The nexus between colonialism and ethnography remains troublesome (Uddin 2011). Ethnography has been well documented as a colonizing tool that has resulted in the de-subjectification of people of the Global South. The production of knowledge can be viewed as an extension of the colonial empire that acts as a consolidation of power (Uddin 2011). Indeed, ethnography has been used as a tool for cultural invasion (Freire 2000), where colonizers intrude on the cultural context of another group and impose their own worldview, undermining or denying the worldview of those who have been invaded. As a remedy to this legacy, critical ethnography has several key tenets (see Soyini Madison 2012), which include challenging the status quo, presenting a challenge to objectivity, and illuminating taken-for-granted assumptions in order to expose underlying inequalities and operations of power. Critical ethnography offers an alternative (although not entirely unproblematic) way of doing ethnographic work. At the center of the method is an ethical commitment to addressing inequality and social injustice (Soyini Madison 2012). Central to this is not viewing people as the object of study but as active agents who are able to speak for themselves (Uddin 2011). Critical ethnography may offer “a way of seeing that reveals the complexities of urban realities among . . . women in a way that a more ‘objective’ methodology may not allow” (Wanjiku Kihato 2013, p. xvii). Critical ethnography involves participant observation, conversations, and group dialogues. Ethnographic research has offered rich accounts in health research and offers space to locate health inequalities in social, political, economic, geographic, and cultural contexts in ways that quantitative work alone cannot (Tjørnhøj-Thomsen and Hansen 2017). Public health research and intervention benefit from the finegrained analysis offered by ethnographic work (Feierman et al. 2010; Nichter 2008). Additionally, ethnographers also have access to marginalized groups and can provide a nuanced analysis of the larger social, structural, and institutional factors that negatively impact health. Ethnographic research offers researchers a tool to explore the nexus between health, context, culture, and broader structural factors (Shih 2018). Critical ethnography politicizes the process of interpreting data by centering collaborative engagement between researchers and participants in ways that facilitate political action and change (Shih 2018).
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Conclusion and Future Directions
As apparent from the illustrated methods, feminist methods and principles and tenets of public health are complementary. Drawing on public health as a conceptual model along with feminist research methods offers an opportunity to theorize about bodies and experiences in relation to other people, institutions, structures, and contexts. Incorporating feminist methodologies into public health research has the potential to attend to the gendered health, socioeconomic, and human rights implications of global public health crises through promoting social justice, privileging marginalized voices, addressing gender data gaps, and critically examining gender-blind public health responses. That is, using feminist methods, public health researchers and practitioners
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may be better able to do surveillance that considers gender and other intersections of identity as it tracks trends, scope, and patterns of problems. Furthermore, many feminist methods go beyond merely identifying risk and protective factors and offer a nuanced and complex picture of the impact and experience of public health issues within communities. That is, how do complex intersections of physical identities, individual well-being, corporal realities, environments, institutions, and state structures cause harm or protect individuals and communities from health problems? Feminist research methods allow researchers, practitioners, and activists to adopt social determinants of health perspective that recognizes the interrelation between health, other social relations, institutions, and physical relations that organize daily lived experience (Scott-Dixon 2009). Feminist public health scholars acknowledge that sex and gender are important determinants of health – but these identities are only one risk factor that interacts with other social determinants throughout individuals’ lives (Scott-Dixon 2009). Employing a social determinant of health perspective allows for health to be conceptualized beyond a self-contained set of risk factors but orientates and connects these factors with broader systemic inequalities (Scott-Dixon 2009). Therefore, it shifts the responsibility of health from the individual to a problem that needs to be addressed by multiple sectors of society (Scott-Dixon 2009). Therefore, feminist research methods offer an opportunity to locate individuals and communities within the multiple structures, institutions, and social relations in which they are embedded. Feminist methodologies are also able to integrate a political lens to understand how broader structures of power and privilege may worsen or mitigate public health crises. Feminist methodologies can be used to develop, implement, and evaluate interventions in ways that are community centered and emphasize political agency and action. That is, communities affected by public health issues are better able to speak to the issues that they face, collaboratively develop context-relevant interventions, and advocate for change. Feminist methods emphasize that the third principle of public health, intervention evaluation, needs to be done in collaboration with the individuals’ communities in which the intervention is being conducted. That is, nothing that is done for a community should be done without their input. Indeed, communities are the experts of their own lives (Brazg et al. 2011). Therefore, adhering to the public health tenets of equity, fairness and inclusivity, empowerment, effectiveness, and evidence-based practice can be fulfilled through collaborative engagement with communities during the implementationevaluation process. Although many feminist methods aim to center communities, sometimes research and tertiary structures act to co-opt community partners and overpower them by centering their own agenda – public health institutions are powerful institutions that are often difficult to subvert (Mykhalovskiy and McCoy 2002). Feminist methodologies can offer public health theoretically plural approaches and multidisciplinary activities to address power imbalances, reveal health disparities, catalyze social change, and center the experiences of women and other vulnerable populations. This chapter has demonstrated that feminist methods can offer public health gender-conscious and intersectional approaches to promote surveillance, identification of risk and protective factors, intervention development, implementation, and evaluation that move toward addressing underlying health inequalities and (re)imagining equitable healthcare.
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Qualitative Research Inquiry and Global Public Health Pranee Liamputtong and Zoe Sanipreeya Rice
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 HIV/AIDS Epidemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 West African Ebola Epidemic . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3 COVID-19 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Mental Health Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.5 Obesity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Qualitative Research and Its Role in Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Qualitative Research Methods: Traditional and Emerging Method . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Traditional Qualitative Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Emerging Qualitative Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Qualitative Research: Its Role in Implementation Science and Evidence-Based Practice in Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Implementation Science and Qualitative Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Evidence-Based Practice in Public Health and Qualitative Research . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Globally, public health issues impact the lives of individuals, families, communities, and nations. This has led public health researchers to conduct research to improve people’s health and well-being. Qualitative research rooted in social science is adopted in global public health where there is a global health problem or issue that needs to be explored. This is particularly when the health problems or issues cannot be easily analyzed using traditional quantitative approaches and P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] Z. S. Rice London, UK © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_45
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when “silenced voices” are not being heard. Qualitative research is an approach researchers use to examine the health and well-being of individuals within the sociocultural contexts of their lives. Fundamentally, qualitative research is interpretive; the meanings and interpretations of the research participants are the essence of qualitative research. Qualitative research is useful for global public health in many ways. It encourages researchers to work with marginalized and vulnerable people and to address these issues within the social justice framework. The methods adopted in qualitative research embrace the lived experiences of people who occupy a variety of social spaces. This chapter discusses the value of qualitative research in global public health. It outlines some recent global public health concerns, the nature and role of qualitative inquiry, and the use of qualitative research in implementation science and evidence-based public health care. Keywords
Global public health · Qualitative research · Meaning · Interpretation · Silenced voices · Implementation science · Evidence-based public health
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Introduction Diversity enhances excellence and innovation. Including diverse individuals who are also different thinkers because of their lived experiences can increase the breadth and depth of biomedical and clinical inquiries to improve the scope and approach to problems that affect all corners of society. (Swartz et al. 2019, p. S33)
Globally, many public health issues impact the lives of individuals, families, communities, and nations. This has led public health researchers to focus on research that can be used to improve people’s health and well-being. Historically, quantitative research rooted in medical science has largely dominated public health research. However, qualitative research methods have become increasingly important in public health research over the past few decades. This approach involves collecting data through methods such as interviews, focus groups, and observation to understand the meanings, values, beliefs, and behaviors of individuals and groups. This approach provides a depth of understanding and context that cannot be obtained through quantitative methods alone. In this regard, qualitative research approaches rooted in social science can provide the “lived experience’ perspective of patients, practitioners and the public on any aspect of public health” (Stickley et al. 2022, p. 237). Qualitative research is “a broad approach” that researchers adopt to examine the experience and social situations of individuals and communities. It is a form of social inquiry which aims to interpret “the meanings of people’s actions and behaviors” (Bradbury-Jones et al. 2017). This inquiry is based on the proposition that people use “what they see, hear, and feel” to make sense of their social experiences (Rossman and Rallis 2017, p. 5). It is a type of research approach that embraces an individual as a “whole person” living in complex and dynamic social contexts.
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Qualitative research has been adopted extensively in the social sciences, particularly in anthropology and sociology. More recently, it has been employed extensively in global health. Numerous studies have used qualitative research as a means to understand public health issues of wider populations, resulting in sensitive and culturally appropriate health care for people around the globe (see a review in Liamputtong and Rice 2021, 2022). This chapter discusses the contribution of qualitative research in global public health. It outlines recent global public health concerns, the nature and role of qualitative inquiry, and the role of qualitative research in implementation science and evidence-based public health care.
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Global Public Health
The history of human civilization and public health are one and the same. It is beyond the scope of this chapter to outline all global public health concerns experienced to date. This section will focus on several recent global major public health issues.
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HIV/AIDS Epidemic
As it enters its fourth decade, the HIV/AIDS epidemic continues to be a serious global public health issue (HIVGov 2021). HIV AIDS is no longer a big health crisis in the West since the invention and widespread use of antiretroviral therapy. However, it continues to be a serious health issue in under-developing countries. HIV/AIDS currently affects many women all around the world, despite initially afflicting mostly intravenous drug users, sex workers, and homosexual males. According to UNAIDS (2021), there were 1.5 million newly infected people and 37.6 million people living with HIV/AIDS globally in 2020. Around 690,000 people died from AIDS in 2020. A number of 34.7 million people have died from AIDSrelated illnesses since the beginning of the epidemic. Women and girls made up approximately 50% of all new HIV infections in 2020. Among young women in developing countries, rates of infection are increasing rapidly. In sub-Saharan Africa (the region most heavily affected by HIV), women and girls comprise 63% of all new HIV infections. In sub-Saharan Africa, six in seven new HIV infections in young people aged 15–19 years are in girls. Young women aged 15–24 years are twice as likely to be living with HIV than men. Children and young people are also severely affected by the HIV/AIDS epidemic (UNAIDS 2021). In 2020, about 1.7 million children and young people aged 0–14 years were living with HIV/AIDS (UNAIDS 2021). Despite the recent reduction in the number of people infected by HIV/AIDS around the globe, it is suggested that the number of individuals living with HIV/AIDS will continue to grow in sub-Saharan Africa (UNAIDS 2021).
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West African Ebola Epidemic
The first known cases of Ebola occurred in the Democratic Republic of Congo and Sudan in 1976. The virus was believed to have originated in bats. Between 2014 and 2016, Ebola demolished West Africa with 28,646 reported cases and 11,323 deaths (Madhav et al. 2018). In December 2013, the first case was found in Guinea; it then quickly spread to Sierra Leone and Liberia. Most Ebola cases and deaths occurred in these three countries. However, several cases were also found in Mali, Senegal, Nigeria, Europe, and the USA. Thus far, there is no cure for Ebola, but efforts at developing a vaccine are continuing (Malik et al. 2023).
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COVID-19
In late December 2019, SARS-CoV-2, a new strain of coronavirus that had not been previously detected in humans, was first reported in Wuhan, China (Chatterjee 2021; Piret and Boivin 2021). This virus has created a cluster of cases of acute respiratory disease, referred to as coronavirus disease 2019 or COVID-19. The World Health Organization deemed the spread of COVID-19 as a pandemic on 11 March 2020. This marks the first global pandemic since the 2009 swine flu pandemic. At present, the virus has spread to all countries around the world, with unanticipated repercussions for the health and well-being of millions of people (Zoumpourlis et al. 2020; Béland et al. 2021; Chatterjee 2021). As witnessed, COVID-19 has created fear among people and uncertainty at all economic and sociopolitical levels. It has markedly impacted people’s daily life, travel, trade, and the local and global economy (Béland et al. 2021; Chatterjee 2021; Moreira and Hick 2021; Thoradeniya and Jayasinghe 2021). COVID-19 is unlikely to be the last pandemic the world will witness. Carroll et al. (2021, p. 2) suggest that epidemics and pandemics will continue to increase, “driven mainly by demographic trends, such as urbanisation, environmental degradation, climate change, persistent social and economic inequalities, and globalised trade and travel.” This has prompted serious discussions about the future of global public health. Zoumpourlis et al. (2020, p. 3046), for example, contend that COVID-19 “should ring like a very loud bell to the ears of the global financial elite and of every single consumer. If global environmental, health and development issues are not addressed holistically, new pandemics will continue to emerge.”
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Mental Health Issues
Public health today places a high priority on mental health concerns. According to the World Health Organization (WHO), mental health conditions cause more disability in developed countries than other illnesses (Schneider 2017). Major depressive disorder is one of the most prevalent mental health conditions in the general population. Feelings of sadness and a decreased ability to feel pleasure are just a few of the signs of this disorder (Goldmann and Galea 2014).
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Environmental factors contribute to a wide variety of mental diseases. For instance, significant, stressful experiences can result in post-traumatic stress disorder (Schneider 2017). This is especially true for those affected by natural disasters such as earthquakes and bushfires, as well as for military personnel engaged in combat. Mental illness and chronic illnesses (including, asthma, cardiovascular disease, cancer, and diabetes) are clearly related. Moreover, injury risk (both intentional and unintentional) is higher for those who struggle with mental health difficulties. Compared to people without mental illness, they have a greater tendency to use tobacco products, misuse alcohol, and engage in other drug usage (Goldmann and Galea 2014; Schneider 2017; Sawyer 2019). The COVID-19 pandemic has brought about increased mental health issues in many parts of the globe. As a result of the strict restrictions implemented to stop the spread of the virus, many people around the world – especially young people – have developed mental health issues, particularly depression (Zoumpourlis et al. 2020).
2.5
Obesity
Obesity has contributed to the global burden of disease (WHO 2021). Since 1975, the prevalence of obesity has tripled in more than 70 nations, and it continues to increase in most other countries (WHO 2021). One of the main risk factors for noncommunicable diseases, such as type 2 diabetes, cardiovascular disease, and musculoskeletal conditions, is being overweight or obese (Schneider 2017). The combination of overconsumption and inactivity contributes to a high prevalence of obesity in many developed countries (including the USA and Australia) (Schneider 2017; Australian Institute of Health and Welfare [AIHW], 2020). The obesity epidemic has grown into a hazard for both developed and developing countries (White et al. 2013). Prevalence rates for obesity and overweight vary in different regions around the globe. Nonetheless, this is a significant issue for many developing nations with overburdened health care systems. Developing countries must deal with the twofold burden of widespread infectious diseases and undernutrition as well as a rising burden of diseases connected to overnutrition (White et al. 2013). By 2025, the number of obese people could double due to the significant rise in overweight and obesity in developing countries. Because the incidence of obesity and overweight has grown so quickly in recent years, the associated health concerns will reverse many public health improvements which were achieved in the twentieth century (Schneider 2017).
3
Qualitative Research and Its Role in Global Public Health Public health, we believe, needs both epidemiology and qualitative research. . . Without qualitative enquiry, it is difficult to explain how individuals interpret health and illness in their everyday lives, or to understand the complex workings of the social, cultural and institutional systems that are central to our health and wellbeing. (Stickley et al. 2022, p. 238)
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Qualitative research focuses on the social world (Liamputtong 2020). The approach has “its origins in interpretivism” (Stickley et al. 2022, p. 237). A qualitative research approach offers “a unique grounding position” for researchers to undertake research that encourages distinct ways of asking questions and offers an insight into the social world, which in turn will help researchers to make sense of a social issue that “privileges subjective and multiple understandings” (Hesse-Biber 2017, p. 4). Qualitative research offers explanations for social actions (Rossman and Rallis 2017). In the social world, researchers deal with the subjective experience of individuals. To capture and understand the perspectives of individuals, qualitative research relies heavily on words or stories that individuals tell researchers (Patton 2015; Creswell and Poth 2018; Liamputtong 2020; Liamputtong and Rice 2022). Qualitative inquiry possesses distinctive characteristics (Rossman and Rallis 2017; Creswell and Poth 2018). These are presented in Fig. 1.
Fundamentally interpretive & focuses on the meanings and interpretation of the participants The researcher is the means through which the research is undertaken
Explicitly attends to the contextual situations of the participants
Qualitative research
Asks why, how, and under what circumstance things arise
Takes place in the natural settings of human life
Emphasizes holistic accounts and multiple realities
Fig. 1 Common characteristics of the qualitative inquiry
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According to Creswell and Poth (2018), qualitative research is adopted where there is a global health problem or issue that needs to be explored. This is particularly the case when the health problems or issues cannot be easily measured or explored using quantitative approaches and when “silenced voices” must be heard. Silenced voices refer to the perspectives and experiences of individuals or groups that are underrepresented or marginalized in social research. These voices are often excluded or minimized in research due to power dynamics, social norms, or researcher biases. Acknowledging and amplifying silenced voices is important in qualitative research to gain a more comprehensive understanding of social phenomena and to promote social justice. Qualitative research permits researchers to ask questions, and to find answers, that can be difficult or impossible with the quantitative approach alone (Hesse-Biber 2017; Liamputtong 2020; Stickley et al. 2022). For example: How do people perceive the recent coronavirus? How does it impact the everyday lives of individuals around the globe? What makes many people refuse to have vaccines? Why are breast cancer screening programs underused by women from ethnic minority groups? What contributes to stigma and discrimination of HIV/AIDS? How do people deal with mental health issues in everyday life? How do young refugees deal with social exclusion? Why do some health programs or interventions targeting the reduction of obesity fail? What makes some of these programs/interventions succeed? These are some examples of issues health and social care policymakers and professions can address using qualitative research. In global health, although social surveys tend to be used in examining the social determinants of health, they often neglect to catch “underlying pathways of pathogenesis” which can only be captured by discerning the immeasurable meanings, perceptions, and beliefs held by local people (Adams 2019, p. 1395). Qualitative research can help researchers and practitioners understand the meanings and interpretations of health and illness of individuals and communities, and to examine why programs and interventions succeed or fail and how to make them work, and address questions such as how do people seek health care, and what are the challenges to health care delivery in the local area (Isaacs 2014; Liamputtong 2020; Stickley et al. 2022). Qualitative inquiry permits researchers to ask questions and to find answers, which can be difficult or impossible with the quantitative approach alone (HesseBiber 2017; Liamputtong 2020; Stickley et al. 2022). Using two recent qualitative research examples in public health (see Lozano-Sufrategui et al. 2020; Eley et al. 2021), Stickley et al. (2022, p. 240) argue that it is very clear that these studies “were able to gain insight into the respective topics that quantitative methods could never achieve.” They point out that: What qualitative research facilitates is the human connection between interviewer and interviewee and in that process, together with the guarantee of confidentiality, people are able to speak in-depth about their experiences and perceptions, from which much can be learned. In these two examples, the qualitative findings give insights into the thoughts and feelings of the participants and enable a greater understanding of how the researchers were able to draw their conclusions from the research.
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When this chapter was written in 2023, people around the world had been severely impacted by the COVID-19 pandemic for several years. This is an example of where qualitative inquiry can play a vital role in understanding people’s lived experiences of the virus, and the impact it has had on their lives. Teti et al. (2020, p. 3) argue that qualitative research is situated to “explore the plurality of expertise and diversity of perspectives necessary to understand fully the COVID-19 pandemic as it unfolds.” Qualitative research can provide in-depth understanding of the situation as it unravels, what people can learn from it for future outbreaks, as well as strategies that can be used to effectively manage the situation. According to Teti et al. (2020, p. 1), “COVID-19 is not just a medical pandemic; it is a social event that is disrupting our social order.” Thus, qualitative approaches are “our best method for capturing social responses to this pandemic. As has been shown with other epidemics and health, these methods allow us to capture and understand how people make meaning and sense of health and illness.” Qualitative research is valuable for public health in many ways. Baum (2016, p. 202) provides several salient contributions of qualitative research to public health as illustrated in Fig. 2. Baum contends that quantitative data may mask people’s experience and their interactions with others. Quantitative research may have less power to allow an in-depth understanding of the contextual issues that have in recent times become a major concern in public health. According to Miles et al. (2014, p. 11), researchers can move beyond “snapshots of ‘what’ or ‘how many’ to ‘how and why things happen as they do’. This will help them to ‘even access causation as it actually plays out in a particular setting.” Qualitative research allows researchers to understand
Explain the economic, political, social & cultural factors that inluence health & illness in more depth than through quantitative methods
Gain an understanding of how communities and individuals within them interpret health & illness & make sense of their illness experiences
Fig. 2 Contributions of qualitative research to public health
Enable public health researchers to elaborate on causal explanations and provide contextual data to explain their epidemiological & clinical research
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people and this understanding can lead to the provision of sensitive and appropriate health and social care to those people and their communities (Liamputtong 2020; Stickley et al. 2022). Importantly, qualitative research is crucial for research involving socially excluded people including marginalized, vulnerable, or hard-to-reach individuals and communities around the globe (Liamputtong 2007, 2010, 2020; Flick 2018). This is particularly so when they are “too small to become visible” in quantitative research (Flick 2018, p. 452). Often, they are excluded from the research and policymaking process. More importantly, due to their marginalized, vulnerable status, and distrust of research, most of these individuals tend to decline to participate in research. The nature of qualitative inquiry will permit qualitative researchers to engage with these individuals. By having opportunities in participating in research, their voices can be better heard. This may assist individuals to be more socially inclusive in society (Liamputtong 2007, 2010, 2020; Liamputtong and Rice 2022).
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Qualitative Research Methods: Traditional and Emerging Method
4.1
Traditional Qualitative Research Methods
Traditional qualitative research methods include in-depth interviewing, focus group, oral/life history, memory work, unobtrusive research, case study, ethnographic, grounded theory, and participatory action research methods. These methods allow researchers to examine health issues from a wide perspective. Each has its own advantages and limitations (see Liamputtong 2020; Liamputtong and Rice 2021, 2022). It is beyond the scope of this chapter to provide full details of each traditional methods, but readers can obtain the details in Liamputtong (2020). In their research, Mansour et al. (2021) explored the experiences of food security among Libyan migrant families in Australia. Food security can be broadly defined as the condition in which all individuals within a community or country have consistent access (physically, socially, and economically) not only to sufficient, safe, and nutritious food but also to culturally appropriate food that meet their dietary needs for healthy and active lives (FAO 2020). Food security is crucial to health and has four dimensions (access, availability, utilization, and stability) and is often less about food availability than issues of accessibility (affordability, location, and transport) (Flores and Amiri 2019; FAO 2020; Tarasuk and Mitchell 2020). Food security among migrants and refugees is a concern across the globe, with the dearth of evidence on food labels and their influence on food security affecting disadvantaged communities especially. A qualitative approach was adopted with in-depth interviews on family food security conducted with 27 Libyan migrants. In-depth interviews allowed us to see the situation from the point of view of the participants and explore their lived experience of food (in)security including how they coped with food shortages. The purpose of conducting in-depth interviews is to
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interpret the meaning of a described phenomenon through the lens of the participant’s lived experience. Additionally, it is a useful method for exploring respondents’ experiences and feelings. As this study also aimed to understand the meaning of food security to Libyan migrant families, in-depth interviews were adopted as these were considered the most appropriate method to meet the study’s objectives. The results of this study identified three main themes: food security, food label comprehension, and strategies for dealing with food insecurity and food labeling difficulties. Food security had different meanings to different individuals. Access to culturally appropriate (halal) foods was problematic for families in regional and rural areas due to a lack of availability outside the main cities. In terms of food labeling, the language and terms used were a common issue for most families in both rural and city environments. Many families attempted to find ways to counteract food insecurity; however, lower-income families found this more difficult for them. The authors argued that it is crucial that health and social welfare providers consider ways of reducing food insecurity among Libyan migrants to allow them to live a healthier life in Australia. This study provides a conceptual understanding about food insecurity among a group of migrants in Australia. Libyan migrants experience a moderate level of food insecurity. They continue to face different challenges, such as a lack of culturally and religiously suitable food, inadequate food labeling, and economic challenges. There is a growing need to address food security policy related to migrants to improve the health and well-being of current and future migrants. This will maximize their health and well-being as well as their contribution to the country’s economy. It will also reduce the potential future burden of disease. Access to culturally and religiously acceptable foods also has the potential to encourage the maintenance of family and cultural bonds, which further support health (physical, emotional, and psychological). The economic impacts of better nutrition and healthier lifestyle are not to be underestimated.
4.2
Emerging Qualitative Research Methods
In recent years, qualitative researchers have adopted more innovative ways of working with those who find traditional qualitative methods intimidating or have difficulties in expressing their experiences verbally. Qualitative researchers have developed many new ways of working with these individuals and communities. These include drawing, photovoice, photo-elicitation, body mapping, digital storytelling, and diary methods. These emerging methods have helped public health researchers collect data from diverse groups of people (see Hesse-Biber 2017; Leavy 2019; Liamputtong 2020; Liamputtong and Rice 2021, 2022). An example is provided below. In their research, Abdulah et al. (2022) used the drawing method to explore the experience of lockdowns during COVID-19 in Iraqi Kurdistan. The evidence has shown that children are more susceptible to the emotional effects of traumatic events such as outbreaks and the consequential disruption to their daily lives. In this paper, the authors discussed the psychological well-being of Iraqi Kurdistan children
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during the COVID-19 outbreak through the art-based qualitative study using the drawing method. Arts-based methods have been employed in research involving children and other vulnerable groups in health science (Benza and Liamputtong 2017; Fernandes et al. 2014; Liamputtong and Fernandez 2015). These methods can be particularly useful when researchers have little information about the investigated issues (Liamputtong 2020). The drawings can “act as a nonverbal stepping-stone into the world of experiences and emotions” of people (Søndergaard and Reventlow 2019). They can convey the meanings, feelings, and experiences of research participants to researchers with ease (Søndergaard and Reventlow 2019). The use of drawings as a research method has provided an extremely useful means for conversations about difficult and taboo subjects with the research participants (Liamputtong 2007; Liamputtong and Benza 2019; Liamputtong and Suwankhong 2015; Søndergaard and Reventlow 2019; Westall and Liamputtong 2011; Joseph et al. 2019). Several researchers have adopted this method with children and found that children are able to express their voices through image better than through verbal responses (Liamputtong and Fernandez 2015; Søndergaard and Reventlow 2019). Abdulah et al.’s (2022) qualitative arts-based research involved 15 children aged 6- to 13-years old who were confined at home during the COVID-19 outbreak for at least 1 month. The children were asked to draw their feelings, reflections, and responses during the COVID-19 pandemic on paper. The children were guided to draw their reflections during the pandemic. Specifically, the children were asked to reflect on if they experienced loneliness, tiredness, insomnia, depression, worry or anxiety, experienced any behavior changes, and reflect on their relationship with their parents and other siblings. This study showed that children experienced a high level of stress at home during the COVID-19 outbreak. The children had great fear about the coronavirus. They experienced loneliness and stress, and felt sad and depressed due to home confinement and social distancing. The possibility of infection by coronavirus occupied their minds. The authors concluded that the children exhibited strong feelings of distress, loneliness, and fear during the COVID-19 outbreak. This has implications for mental health care for children in Kurdistan and elsewhere. Mental health care providers must take the experiences of children who are caught in this global pandemic seriously and ensure that appropriate care is offered to the children and their parents.
5
Qualitative Research: Its Role in Implementation Science and Evidence-Based Practice in Public Health
5.1
Implementation Science and Qualitative Research
In global health, implementation science attempts to narrow the gap that prevents “intervention known to be effective from being widely used” (Ware 2019, p. S217). Qualitative inquiry can assist in closing this gap. Qualitative research has become an
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important research tool in implementation-oriented research on HIV. In particular, it is being used to examine implementation outcomes, for example, intervention acceptability and perceptions and/or acceptance of users. The approach has also been adopted in research that explores barriers and facilitators to the use, and acceptance of emerging HIV prevention and treatment interventions (Ware 2019). The recent work of Ware et al. (2016) illustrates the value of qualitative inquiry in implementation science on HIV prevention and treatment. In Ware et al.’s research in South Africa (Ware et al. 2016), an intervention aimed at improving adherence to ART was developed. Real-time electronic monitoring devices were used for the measurement of adherence. The devices recorded the time and date every time it was opened to remove a pill. The recording was then transmitted over cellular phone networks to the central station. Failure to receive a signal indicated a missed dose. Evaluation of the intervention was conducted through a small randomized trial and qualitative research. As part of the qualitative study, the trial participants were individually interviewed about their perceptions and experiences of the intervention. Interestingly, there was one important aspect of the findings that the researchers did not anticipate before the trial. Ware (2019, p. S218) writes: The qualitative data also revealed a role for the electronic monitoring device in facilitating adherence. Understanding the device transmitted reports of openings immediately; in real time, participants experienced monitoring as ‘being seen adhering’ by clinic and study staff. They interpreted this as an opportunity to show staff they appreciated the care they were receiving by demonstrating their commitment to treatment. They sought to demonstrate their commitment through good adherence.
Ware (2019, p. S218) contends that “through the qualitative research, a component not initially considered part of the intervention was revealed to have an effect on the outcome of interest.” This research example illustrates the value of qualitative inquiry which can contribute significantly to global public health. In her conclusion about the contribution of qualitative research in implementation science, Ware (2019, p. S217) suggests three salient issues as illustrated in Fig. 3. Qualitative research, as Ware (2019, p. S217) argues, contributes to implementation research by “deepening and ‘thickening’ the conceptualization of implementation problems.” Stronger conceptualizations will result in stronger implementation strategies. This will increase the “use of evidence-based interventions for HIV prevention and treatment as they are made available to the public worldwide.”
5.2
Evidence-Based Practice in Public Health and Qualitative Research
Evidence-based practice (EBP) has been applied in many health and social care disciplines, including public health (Straus et al. 2019; Liamputtong 2022). In evidence-based public health (EBPH), practitioners must be clear about what is known and not known about any health problem or health practice that will be
Qualitative Research Inquiry and Global Public Health Fig. 3 The contribution of qualitative research in implementation science
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Offering an alternative to frameworkdriven investigation Providing tools for understanding user experience of interventions Developing local explanations of intervention processes & outcomes
“best” for their clients (Schmidt and Brown 2019; Mullen et al. 2018; Greenhalgh et al. 2020; Portney 2020). However, all too often, we know little about the specific health problems of a particular population, or about treatment options that are not empirically based. Although there is a wealth of research evidence in the existing public health literature, there are still many health issues that remain unexamined or underexamined. Currently, EBPH may not apply to many public health issues experienced by various populations, for example, certain ethnic minority and indigenous groups, recent immigrants and refugees, members of the LGBTQIA+ community, rural communities, and people with uncommon or particularly challenging health problems. Due to the lack of relevant research, these individuals have poor access to health care and treatments, and attention may be deflected from actions that may have a significant influence on their health. Hernández-Marrero et al. (2018, p. 149) argue that due to the focus on “evidence biased” practice in public health and medicine, some vulnerable people are excluded in research, and this can lead to poor quality of care. The quantitative approach is grounded in the principles of empirical science, which emphasizes the use of empirical evidence to support or refute hypotheses and theories. It involves the collection and analysis of numerical data using statistical techniques to draw objective conclusions and establish causeand-effect relationships. As quantitative research tends to be seen as being more systematic than qualitative research, the findings of this approach are often seen as more reliable. However, the authors argue that evidence derived from the qualitative approach can help public health practitioners understand health issues and incorporate findings in their practice. Qualitative research provides evidence that may not be possible to obtain from quantitative research or from a systematic review of quantitative research (Patton 2016; Olsen et al. 2016; Hannes and Bennett 2017; Tracy 2019; Greenhalgh et al. 2020; Portney 2020). Indeed, several researchers have argued that “qualitative research findings have much to offer evidence-based practice” (Hawker et al. 2002, p. 1285; see also Grypdonck 2006; Jack 2006; MeadowsOliver 2009; Houser 2015; Olsen et al. 2016; Hannes and Bennett 2017). Qualitative inquiry is an essential means of eliciting evidence from diverse individuals, population groups, and contexts. Long (2015) and Portney (2020)
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contend that public health practitioners should not underestimate the contributions of qualitative research because data from qualitative inquiry can offer the perspective of the consumers/patients, which is a crucial part of EBP in health care. The findings from qualitative research can be used to “enhance evidence-based practice” by integrating the values and preferences of consumers into the guides for public health care practice (Houser 2015). According to Hannes and Bennett (2017, p. 243), “the experiences of patients are a rich source of evidence for practice and can increase our understanding of how individuals and communities perceive health, manage their own health, and make decisions related to health service usage.” Qualitative research is especially valuable in EBPH as it allows us to identify the needs, motives, and preferences of the patients (Houser 2015). According to Houser (2015, p. 388), qualitative research is “helpful in describing the acceptability of an intervention. Interventions that require lifestyle adjustment, attitude changes, or behavioural alterations are particularly well suited to qualitative studies.” Although practitioners must use “scientific evidence” in their evidence-based health care, they must also “see a social or human problem through the eyes of the patient.” Indeed, qualitative inquiry not only offers an in-depth understanding about patients but also “adds another dimension to quantitative evidence: one based on the human experience” (Houser 2015, p. 389). Public health practitioners may not obtain knowledge from existing literature to address these crucial issues of health and illness. Such knowledge can only be gained through the integration of research into their daily work. Surely, by gaining a better understanding of the lived experience of clients, public health practitioners will be able to provide more sensitive and appropriate care to them. In relation to interventions in health care, qualitative research can contribute to many things as illustrated in the Fig. 4 below.
allows health care providers pinpoint the needs of people that they serve
helps health care providers develop interventions which are more acceptable to their patients
helps health care providers better understand the effect of an intervention from the patients’ perspectives within their own social/cultural contexts
provides health care providers a more accurate understanding of the reasons for attrition, cessation of treatment, or lack of adherence to a treatment protocol
Fig. 4 Qualitative research and interventions in health care
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Recently, there has been an attempt to synthesize qualitative findings in a form of metasynthesis which provides “stronger credibility” than individual studies can offer within EBPH (Thorne 2009, p. 571; Houser 2015; Dawson 2019). Metasynthesis provides “a mechanism to help establish qualitative research as a viable source of evidence for EBP” (Zuzelo 2012, p. 500). With the acceptance of metasynthesis of qualitative research in EBPH, “the pursuit of ‘what works’ in evidence-based practice can be enhanced by examining ‘what is at work’ when individuals and communities experience interventions and report these experiences in their own words” (Padgett 2012, p. 193).
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Conclusion and Future Directions
Qualitative research has become a well-established and important mode of inquiry in many fields. This chapter has suggested that qualitative inquiry can contribute significantly to global public health research. There have been multiple public health concerns globally that have resulted in the marginalization of vulnerable people. According to the Lancet Infectious Diseases Editorial (2022, p. 1253): “The COVID-19 pandemic has highlighted the significant disparities that individuals and communities face in access to essential health services and, consequently, in disease outcomes.” Qualitative research is critical in helping researchers and health practitioners establish better health care solutions for people, particularly those who are marginalized and vulnerable (Flick 2018). Qualitative inquiry can lead to positive health outcomes and life changes for many people. Denzin (2017, p. 8) clearly articulates this when he calls for qualitative research that “matters in the lives of those who daily experience social injustice.” Qualitative research will continue to play a vital role in global public health in the years to come. To end this chapter, it would be worthwhile to quote Denzin and Giardina (2021, p. 11) at length on the value of qualitative inquiry and the role of qualitative researchers in recent pandemic and what might come: We live in ever-changing, ever more complicated times. The year 2020 has pushed personal and professional lives to the brink, strained an already-strained system far beyond its healthy capacity, and ushered in a growing chorus of dark forces. . . If 2020 has shown us anything, it is that life can change in an instant. We do not know what the social landscape will look like this time next year, or even three months from now. What we do know is that our community of qualitative researchers has a role to play. It is up to you to determine what stories to tell, what spaces to intervene and change, how to ensure the lessons of 2020 are never forgotten. We have a job to do; let’s get to it.
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Hernández-Marrero P, Martins Pereira S, Araújo J, Sofia Carvalho A (eds) Ethics and integrity in health and life sciences research: advances in research ethics and integrity, vol 4, pp 147–168 Hesse-Biber SN (2017) The practice of qualitative research, 3rd edn. Sage Publications, Thousand Oaks HIVGov (2021) The global HIV/AIDS epidemic. Retrieved from https://www.hiv.gov/hiv-basics/ overview/data-and-trends/global-statistics Houser J (2015) Nursing research reading: using and crafting evidence, 3rd edn. Jones & Bartlett Leaning, Sunbury Isaacs AN (2014) An overview of qualitative research methodology for public health researchers. Int J Med Publ Health 4(4):318–323 Jack SM (2006) Utility of qualitative research findings in evidence-based public health practice. Public Health Nursing 23(3):277–83. Joseph J, Liamputtong P, Brodribb W (2019) The use of drawing method and infant feeding practice with refugee mothers: from the lends of settlement. In: Liamputtong P (ed) Handbook of research methods in health social sciences. Springer Nature, Singapore. https://doi.org/10. 1007/978-981-10-2779-6_44-1 Leavy P (ed) (2019) Handbook of arts-based research. The Guilford Press, New York Liamputtong P (2007) Researching the vulnerable: a guide to sensitive research methods. Sage, London Liamputtong P (2010) Performing qualitative cross-cultural research. Cambridge University Press, Cambridge Liamputtong P (2020) Qualitative research methods, 5th edn. Oxford University Press, Melbourne Liamputtong P (2022) Introducing evidence-based practice and health. In Liamputtong, P. (ed.), Research methods and evidence-based practice, 4th edn. Oxford University Press: Melbourne Liamputtong P, Benza S (2019) ‘Being able to bear a child’: insights from Zimbabwean women in Melbourne. Women Birth 32(2):e216–e222 Liamputtong P, Fernandez S (2015) The drawing method and Burmese refugee children’s perceptions of health and illness. Australas J Early Childhood 40(1):23–32 Liamputtong P, Rice ZS (2021) Qualitative research inquiry in global health. In: Haring R, Kickbusch I, Ganten D, Moeti M (eds) Handbook of global health. Springer Nature, Cham Liamputtong P, Rice ZS (2022) Qualitative inquiry and inclusive research methods. In: Liamputtong P (ed) Handbook of social inclusion, research and practices in the health and social sciences. Springer, Cham Liamputtong P, Suwankhong D (2015) Therapeutic landscapes and living with breast cancer: the lived experiences of Thai women. Soc Sci Med 128:263–271 Long CO (2015) Other sources of evidence. In: Schmidt NA, Brown JM (eds) Evidence-based practice for nurses: appraisal and application of research, 3rd edn. Jones & Bartlett Learning, Burlington, pp 320–340 Lozano-Sufrategui L, Pringle A, Carless D et al (2020) A qualitative study of men’s behavioural changes during weight loss maintenance. Perspect Public Health 140(6):317–326, 9 Madhav N, Oppenheim B, Gallivan M, Mulembakani P, Rubin E, Wolfe N (2018) Pandemics: risks, impacts, and mitigation. In: Jamieson DT, Gelband H, Horton S, Jha P, Laxminarayan R, Mock CN, Nugent R (eds) Disease control priorities: improving health and reducing poverty Malik S, Kishore S, Nag S, Dhasmana A, Preetam, S, Mitra O, León-Figueroa DA, Mohanty A, Chattu VK, Assefi M, et al (2023) Ebola virus disease vaccines: development, current perspectives & challenges. Vaccines 11:268. https://doi.org/10.3390/vaccines11020268 Mansour R, Liamputtong P, Arora A (2021) Food security among Libyan migrants living in Australia: a qualitative study. Sustainability 13:13853. https://doi.org/10.3390/su132413853 Meadows-Oliver M (2009) Does qualitative research have a place in evidence-based nursing practice? Journal of Pediatric Health Care 23(5):352–4 Miles MB, Huberman AM, Saldaña J (2014) Qualitative data analysis: a methods sourcebook, 3rd edn. Sage, Thousand Oaks
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Moreira A, Hick R (2021) COVID-19, the great recession and social policy: is this time different? Soc Policy Adm:1–19. https://doi.org/10.1111/spol.12679 Mullen EJ, Bellamy JL, Bledsoe SE (2018) Evidence-based practice. In: Grinnell RM, Unrau YA (eds) Social work research and evaluation: foundations of evidence-based practice, 10th edn. Oxford University Press, New York, pp 200–217 Olsen K, Young RA, Schultz IZ (2016) Handbook of qualitative health research for evidence-based practice. Springer, New York Padgett DK (2012) Qualitative and mixed methods in public health. Sage, Thousand Oaks Patton MQ (2015) Qualitative research and evaluation methods, 4th edn. Sage, Thousand Oaks Patton MQ (2016) Qualitative research and evaluation methods, 4th edn. Sage, Thousand Oaks Piret J, Boivin G (2021) Pandemics throughout history. Front Microbiol 11:631736. https://doi.org/ 10.3389/fmicb.2020.631736 Portney LG (2020) Foundations of clinical research: applications to evidence-based practice. F.A. Davis, Philadelphia Rossman GB, Rallis SF (2017) Learning in the field: an introduction to qualitative research, 4th edn. Sage, Thousand Oaks Sawyer A-M (2019) Mental illness: understanding, experience, and service provision. In J. Germov (Ed.), Second opinion: an introduction to health sociology (6th ed.) (pp. 307–324). Melbourne: Oxford University Press Schmidt NA, Brown JM (2019) What is evidence-based practice? In: Schmidt NA, Brown JM (eds) Evidence-based practice for nurses: appraisal and application of research, 4th edn. Burlington, Jones & Bartlett Learning, pp 3–66 Schneider M-J (2017) Introduction to public health, 5th edn. Jones & Bartlett, Sudbury Søndergaard E, Reventlow S (2019) Drawing as a facili- tating approach when conducting research among children. Int J Qual Methods 18:1609406918822558 Stickley T, O’Caithain AM, Homer C (2022) The value of qualitative methods to public health research, policy and practice. Perspect Public Health 142(4):237–240 Straus SE, Glasziou P, Richardson WS, Haynes RB, Pattani R, Veroniki AA (2019) Evidence-based medicine: how to practice and teach it. Elsevier, London Swartz TH, Palermo A-GS, Masur SK, Aberg JA (2019) The science and value of diversity: closing the gaps in our understanding of inclusion and diversity. J Infect Dis 220(S2):S33–S41 Tarasuk V, Mitchell A (2020) Household food insecurity in Canada, 2017–2018. Available online: https://proof.utoronto.ca/. Accessed 19 October 2020 Teti M, Sanchez E, Liebenberg L (2020) Methods in the time of COVID-19: the vital role of qualitative inquiries. Int J Qual Methods 19:1–5 The Lancet Infectious Diseases Editorial (2022) Designing infectious disease programmes for the future. Lancet Infect Dis 22:1253 Thoradeniya T, Jayasinghe S (2021) COVID-19 and future pandemics: a global systems approach and relevance to SDGs. Glob Health 17:59. https://doi.org/10.1186/s12992-021-00711-6 Thorne S (2009) The role of qualitative research within an evidence-based context: can metasynthesis be the answer? Int J Nurs Stud 46(4):569–575 Tracy SJ (2019) Qualitative research methods: collecting evidence, crafting analysis, communicating impact. Wiley, Newark UNAIDS (2021) Global HIV statistics – Fact sheet 2021. Retrieved https://www.unaids.org/en/ resources/fact-sheet Ware NC (2019) Qualitative contributions to implementation research on HIV prevention and treatment. Acquired Immune Deficiency Syndrome 82(Suppl 3):S217–S221 Ware NC, Pisarski EE, Tam M et al (2016) The meanings in the messages: how SMS reminders and real-time adherence monitoring improve antiretroviral therapy adherence in rural Uganda. AIDS 30:1287–1293. http://www.who.int/en/news-room/fact-sheets/detail/tobacco Westall C, Liamputtong P (2011) Motherhood and post- natal depression: narratives of women and their partners. Springer Science & Business Media
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White FMM, Stallones L, Last JM (2013) Global public health: ecological foundations. Oxford University Press, New York World Health Organization (2021) Obesity and overweight. Retrieve https://www.who.int/newsroom/fact-sheets/detail/obesity-and-overweight Zoumpourlis V, Goulielmaki M, Rizoz E, Baliou S, Spandidos DA (2020) The COVID-19 pandemic as a scientific and social challenge in the 21st century. Mol Med Rep 22:3035–3048 Zuzelo PR (2012) Evidence-based nursing and qualitative research: a partnership imperative for real-world practice. In: Munhall PL (ed) Nursing research: a qualitative perspective, 4th edn. Jones & Bartlett, Sudbury, pp 481–500
Cultural Determinants of Health, Cross-Cultural Research and Global Public Health Zoe Sanipreeya Rice and Pranee Liamputtong
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Cultural Determinants of Health and Global Mental Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Qualitative Inquiry and Cross-Cultural Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Ethics and Cross-Cultural Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-Cultural Research and Languages . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Social determinants, including cultural factors, significantly impact individuals’ health beliefs, behaviors, help-seeking patterns, and health care utilization. Recognizing and accounting for cultural differences is crucial as the meanings and understanding of health, illness, and well-being are shaped by culture. This chapter provides an in-depth understanding of cultural determinants of health and their impact. It discusses definitions of culture, its role in shaping health, and the influence of cultural determinants on health beliefs, behaviors, and health care utilization. The chapter also highlights the intersection of culture and global mental health and the importance of qualitative research in cross-cultural research. Ethical considerations and language issues in cross-cultural research are addressed, including the unique challenges presented by linguistic and cultural differences. Researchers must recognize and account for these differences to conduct ethical cross-cultural research. They must effectively communicate research findings while protecting the identity of research participants. Overall, Z. S. Rice London, UK P. Liamputtong (*) College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_44
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cultural factors play a significant role in shaping health outcomes, and understanding the impact of cultural determinants of health is crucial for improving health equity. This chapter provides valuable insights into the intersection of culture and health, highlighting the importance of cultural competence and ethical considerations in conducting cross-cultural research. By recognizing and addressing cultural differences, researchers can work towards improving health outcomes for all individuals, regardless of their cultural background. Keywords
Culture · Cultural determinants of health · Global mental health · Cross-cultural research · Qualitative research · Ethics · Language issue
1
Introduction
The well-being of individuals is significantly affected by a variety of social determinants, including cultural, social, economic, historical, and political factors (Liamputtong 2019). The World Health Organization (CSDH 2008, p. 1) defines social determinants of health as “the circumstances in which people grow, live, work, and age, and the systems put in place to deal with illness. The conditions in which people live or die are, in turn, shaped by political, social and economic forces.” Social determinants are the primary drivers of health or illness and are considered the “causes of the causes” (Marmot and Bell 2016). They constitute the root of health inequities, which are the unjust and preventable disparities in health status observed worldwide (WHO 2020). Cultural determinants of health, a subset of social determinants, refer to the belief systems, practices, values, and social norms governed by culture (Rice and Liamputtong 2021; Liamputtong et al. 2022). These factors impact health beliefs, behaviors, help-seeking patterns, and health care utilization among individuals and groups (Vaughn 2019). Cultural determinants interact with other social and structural elements of society, influencing health outcomes at both individual and community levels. In an increasingly globalized world, understanding the complexity of individual and cultural influences is crucial (Vaughn 2019). The first part of this chapter will explore key issues related to culture and global health, including the concepts of culture, cultural determinants of health, and culture and mental health. A thorough understanding of cultural determinants will contribute to the promotion of health equity worldwide. Culturally competent social care necessitates knowledge of the social and cultural contexts in which people live, which can be obtained through research, particularly qualitative approaches (Smith 2008, 2021; Liamputtong 2010, 2020, 2023; Atherton et al. 2020). Researchers must ensure that their studies are ethically conducted and respect the cultural integrity of participants, ultimately benefiting rather than harming the communities involved (Liamputtong 2010, 2020, 2023; Atherton et al. 2020; Broesch et al. 2020; Chilisa 2020; Gromkowska-Melosik 2021; Smith
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2021). The second part of this chapter will examine the importance of qualitative research in cross-cultural studies, addressing ethical considerations and language issues in cross-cultural research.
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Culture
Culture impacts how individuals and groups perceive, experience, and address physical and emotional health issues, as well as who they seek assistance from (Vaughn 2019; Rice and Liamputtong 2021). It shapes a person’s understanding of health problems and influences their help-seeking behaviors (Vaughn 2019; Teti and van Wyk 2020). Cultural factors play a vital role in addressing global health issues such as mental illness, HIV/AIDS, drug addiction, obesity, infant mortality, violence, and pandemics (Winkelman 2009; Liamputtong 2019; Rice and Liamputtong 2021). Recognizing the role of culture in health helps health care providers better understand health problems and deliver appropriate care (Winkelman 2009; Kagawa Singer et al. 2016; Vaughn 2019; Teti and van Wyk 2020; Rice and Liamputtong 2021). Culture, as defined by Wiley and Allen (2017, p. 7), consists of commonly shared behavior patterns within a group, including traditions, customs, beliefs, values, and practices. Culture shapes the way people perceive and interact with the world (Helman 2014, p. 3). It also influences the prevailing health issues and concerns within a society and how people respond to them (Winkelman 2009; Liamputtong and Suwankhong 2019; Rice and Liamputtong 2021). Culture encompasses social structures that affect individuals’ lives (Kagawa Singer et al. 2016; Vaughn 2019). Culture is fluid and dynamic, adapting to new circumstances and sociocultural situations (Helman 2014; Wiley and Allen 2017; Kagawa Singer et al. 2016; Lock and Nguyen 2018). However, culture is not the sole determinant of health, illness, and well-being; other factors like individual characteristics (such as age, gender ethnicity, and experience), education, socioeconomic factors, and environmental factors also play a role (Helman 2014; Kagawa Singer et al. 2016; Liamputtong 2019; Vaughn 2019). It is essential to acknowledge that culture influences not only individual health consumers but also health care providers (Napier et al. 2014). Cultural differences between providers and patients can lead to misunderstandings and conflicts, affecting the quality of care (Liamputtong and Suwankhong 2019). To improve health care, providers must consider cultural influences on health as well as the beliefs and practices of individuals and develop cross-cultural relationship skills (Winkelman 2009; Napier et al. 2014; Kagawa Singer et al. 2016; Vaughn 2019).
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Cultural Determinants of Health and Global Mental Health
Health and illness are understood and defined differently across various cultures and societies, as they are socially and culturally constructed concepts (Wiley and Allen 2017; Liamputtong and Suwankhong 2019; Rice and Liamputtong 2021).
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Consequently, one culture’s perception of health, illness, and well-being may differ significantly from another’s (Vaughn 2019; Rice and Liamputtong 2021). For instance, while Western societies often view obesity as unhealthy, certain other cultures regard obese individuals as healthy and thin individuals as sickly (Winkelman 2009). The idealization of thin bodies as symbols of health in the West contrasts with the perception of malnutrition and illness associated with thinness in sub-Saharan Africa (Vaughn 2019). In rural Oaxaca, Mexico, Alzheimer’s disease is considered “a modern condition” arising from stress caused by moving away from traditional lifestyles, adopting Western values, migration, and abandoning local customs (Yahalom 2019). Asian cultures often attribute illness to an imbalance between yin and yang (hot and cold, light and dark, positive and negative) forces (Che et al. 2017). Numerous cultural groups ascribe illness to spiritual and supernatural causes, such as sin, soul loss, spirits, or witchcraft, while others attribute it to the natural environment (pollution, water, and germs) or social and economic factors (poverty, violence, and personal stress) (Kleinman and Benson 2016). Health beliefs and practices among Central American immigrants are heavily influenced by religious tradition, leading them to rely on folk healers and folk medicines to address health issues. The Hmong people, an ethnic group found in countries such as Australia and the USA, possess various beliefs about supernatural beings that can cause illness and death (Winkelman 2009, p. 4). Hmong people view health as a complex interplay of religion, lost souls, spirits, and a balance of multiple aspects of life. Although they primarily attribute misfortune to soul loss (Liamputtong Rice 2000), they also acknowledge the role of natural or organic factors in causing illness. Hmong beliefs emphasize the importance of maintaining harmony with natural forces to maintain good health (Winkelman 2009). For instance, women who have recently given birth are believed to be in a state of disequilibrium with nature and must rest for 30 days while avoiding “cold” and “wrong” foods, consuming only hot food, mainly chicken cooked with herbal medicines, during this time. Failing to adhere to these practices is thought to result in future health problems (Liamputtong Rice 2000). Mental health issues continue to be a significant health concern across all age groups globally. Mental health disorders, such as schizophrenia and depression, constitute a substantial portion of the worldwide health burden (Stompe and Holzer 2018; Ngubane et al. 2019). Approximately 24 million people live with schizophrenia, with 90% residing in developing countries (Ngubane et al. 2019). Perceptions of mental illness, its causes, and treatments vary across cultures (Kimotho 2018; Becker et al. 2019). What is considered a “psychiatric condition” in the biomedical system may not be recognized as an “illness” within diverse sociocultural contexts (Koschorke et al. 2017). Furthermore, symptoms of mental illness that are stigmatized in one cultural setting might not be associated with social stigma in another, especially when the mental issue is not regarded as an illness (Koschorke et al. 2017). For instance, in certain cultures, individuals who experience hallucinations may be perceived as privileged due to their ability to hear God’s voice, resulting in high levels of respect. Such individuals often become traditional healers who can address specific health issues. In Western societies, mental illness is
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typically attributed to psychological trauma, head injury, or genetics (Aina 2018). In contrast, non-Western societies may view mental illness as a “disruption of the mind” caused by bad karma from past lives, possession by supernatural forces, or punishment by these forces (Becker et al. 2019). One example of this cultural difference is the belief in jinn (spirit) possession as a cause of mental illness in Islamic cultures, particularly those in South and Southeast Asia, the Middle East, and many parts of Africa (Im et al. 2017). Symptoms of jinn possession can range from behavioral changes and deviant behaviors to somatic pains and psychotic symptoms such as hallucinations. The attribution of symptoms to culturally acceptable phenomena allows people to talk about their mental health needs in a less stigmatized way and seek health care accordingly. Culture also can impact treatment. For instance, the Somali community often employs Qur’an recital as an effective treatment. Religion also plays a significant role in understanding mental illness among some Asian communities. In their research with Asian Americans, Wynaden et al. (2005) suggest that Buddhism and Taoism heavily influence the health beliefs of community members. Buddhists believe in reincarnation and the philosophy of karma, where positive actions result in positive reactions and negative actions result in negative reactions. For parents with a child experiencing mental illness, this belief can lead to viewing it as punishment for past bad deeds. Another common belief among Asians is that spirit possession causes mental illness. In some cases, mental illness is thought to result from “bad blood” transmitted through the mother (Tran 2018, p. 83). Mental illness is a “silent epidemic” in many parts of Africa (Kimotho 2018, p. 21). A recent study in Botswana found that mental illness is commonly referred to as “botseno” (symbolizing madness) and “bahaphegile” (indicating deviance and difference that results in discrimination) (Becker et al. 2019, p. 1574). The local perception of mental illness is that it is chronic and incurable, and that it occurs “when the trees blossom.” Witchcraft is a common explanation for mental illness in many African communities, with social transgression or jealousy of others’ success as the cause. Those with mental illness, especially schizophrenia, are often stereotyped as dangerous, unpredictable, cognitively impaired, and untrustworthy (Zäske et al. 2019). Cultural beliefs and stereotypes like these perpetuate stigma and discrimination toward people experiencing mental illness (Koschorke et al. 2017; Kimotho 2018; see also Link and Stuart 2017; Zäske et al. 2019). Stigma is a “devaluation” process that links to stereotyping and prejudice, separating stigmatized individuals from others (Goffman 1963). This stigma results in those who are stigmatized becoming “discounted” or “tainted.” The manifestation and implications of stigma vary across cultures. For instance, in Asian cultures, stigma can result in negative perceptions of the mentally ill and can reduce the marriage value of a person as well as the value of their family (Tran 2018). Discrimination and prejudice can lead to social exclusion, disconnecting stigmatized individuals from society and its benefits like education, housing, social support, and health care (Major et al. 2018; Zäske et al. 2019). Stigma and social exclusion can have severe individual consequences, including isolation, low self-esteem,
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depression, self-harm, poor academic achievement and social relationships, poor physical and mental health, and suicide (Link and Stuart 2017; Major et al. 2018; Liamputtong and Kitisriworapan 2019; Ngubane et al. 2019). Cultural stigma toward mental illness is a significant factor contributing to the underutilization of mental health care in many groups (Kimotho 2018; Ngubane et al. 2019). Individuals living with mental illnesses often experience feelings of shame and stigmatization, leading them to hide their problems out of fear of being labeled. As a result, some individuals may delay seeking help or never seek help at all (Tran 2018; Ngubane et al. 2019; Zäske et al. 2019). This can have devastating effects, including prolonged suffering, poor mental health outcomes, and even suicide. Therefore, it is essential to address cultural stigma surrounding mental illness to promote early diagnosis, access to appropriate care, and improved mental health outcomes.
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Qualitative Inquiry and Cross-Cultural Research
Qualitative research plays an essential role when researchers possess limited knowledge about a subject area involving participants’ subjective experiences and contextspecific meanings (Liamputtong 2010, 2020, 2023). Furthermore, this method enables the expression of “conveying sensitivity” (Davies et al. 2009, p. 6), which can help mitigate or alleviate distrust that individuals from diverse cultural backgrounds might harbor towards research and researchers (Davies et al. 2009; Denzin and Salvo 2020; Liamputtong 2010, 2020, 2023). The qualitative approach primarily depends on the words or narratives that participants share with researchers, focusing on the social world rather than the natural world (Cardano 2020; Liamputtong 2010, 2020, 2023; Liamputtong and Rice 2021). Researching social life is fundamentally distinct from investigating natural phenomena, as it involves exploring human beings’ subjective experiences, which may vary across social contexts and evolve over time (Cardano 2020; Denzin and Salvo 2020; Liamputtong 2010, 2020, 2023; Liamputtong and Rice 2021). As Goitom (2020, p. 551) states, “the qualitative research paradigm is engaged with understanding how social experiences are created and given meaning.” The focus of qualitative research is interpretation and flexibility (Liamputtong 2020; Liamputtong and Rice 2021). The interpretive and flexible approach is necessary for cross-cultural research because this approach focuses on meaning and interpretation (Creswell and Poth 2018; Cardano 2020; Liamputtong 2010, 2020, 2023; Maxwell 2020; Liamputtong and Rice 2021). Qualitative data captures the world from the perspective of research participants rather than presenting it from the researcher’s point of view. Most qualitative researchers embrace the notion that to understand people’s actions, researchers must attempt to understand the meanings and interpretations people give to their actions (Creswell and Poth 2018; Donà et al. 2019; Cardano 2020; Liamputtong 2010, 2020, 2023; Maxwell 2020; Liamputtong and Rice 2021). Owing to its adaptability and fluid nature, qualitative research is well-suited for comprehending the meanings, interpretations, and subjective experiences of
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individuals (Creswell and Poth 2018; Donà et al. 2019; Cardano 2020; Liamputtong 2010, 2020, 2023; Maxwell 2020; Liamputtong and Rice 2021; Bryman 2022). Qualitative inquiry enables researchers to listen to the perspectives of those who are frequently silenced, marginalized, or othered (Hesse-Biber and Leavy 2005, p. 28; Denzin and Salvo 2020; Liamputtong 2007, 2010, 2020). The detailed nature of qualitative methods empowers participants to convey their emotions and experiences in their own words (Padgett 2012, 2017; Creswell and Poth 2018; Donà et al. 2019; Cardano 2020; Liamputtong 2010, 2020, 2023; Liamputtong and Rice 2021; Bryman 2022). This approach is particularly relevant and crucial when conducting research with historically oppressed communities seeking greater control over their lives. According to Morris (2007, p. 410), qualitative research is the “sociological vanguard” for examining cross-cultural issues (see also Donà et al. 2019; Denzin and Salvo 2020; Goitom 2020; O’Rourke et al. 2021; Lawrence 2022; Liamputtong 2010, 2023). Because of qualitative approaches’ ability to closely follow social processes as they emerge and change, it is particularly useful for examining how race, culture, and ethnicity are “products of social interaction” (Morris 2007, p. 410; see also Teti and van Wyk 2020). O’Rourke et al. (2021, p. 9) also state that crosscultural qualitative research is known for its ability to meaningfully include and give voice to cultural minority groups who are silenced or bothered by the dominant social order and attempts to understand the experiences of individuals within their own socioeconomic contexts. Teti and van Wyk (2020, p. 1), citing the work of Wilson et al. (2016) who used qualitative approach in their HIV research, argue that qualitative research methods are crucial in examining cultural meanings of HIV as well as sexuality and relationships. Qualitative research helps “to translate these meanings into helpful interventions.” In cross-cultural research, it is impossible to measure or generalize people if researchers wish to understand people within the context of their society and culture (Liamputtong 2010, 2023). As many people in the twenty-first century struggle with inequalities and difficulties in their lives, social researchers have a moral obligation to take action to improve the lives of people from different cultures, especially those who are marginalized and vulnerable. A qualitative approach is more likely to allow researchers to achieve this goal than a quantitative approach that heavily relies on numbers (see Liamputtong 2007, 2010, 2020, 2023; Denzin and Salvo 2020). The qualitative approach is characterized by an interpretive and flexible perspective that enables researchers to examine meaning and interpretation, which is necessary for cross-cultural research. Additionally, qualitative research relies heavily on narratives or words that people tell researchers, with a focus on the social world rather than the natural world. Furthermore, cultural beliefs and stereotypes perpetuate stigma and discrimination among people experiencing mental illness, leading to the underutilization of mental health care in many groups. Qualitative research helps to eliminate or reduce distrust that individuals from different cultural groups may have toward research and researchers by conveying sensitivity. It is essential to adopt a qualitative approach in researching those communities who are historically oppressed but want to take control of their lives, and the qualitative approach is
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particularly useful for examining cross-cultural issues as it can give voice to cultural minority groups who are silenced or bothered by the dominant social order (Liamputtong 2010, 2020, 2023).
5
Ethics and Cross-Cultural Research
Ethics pertains to a collection of moral standards aimed at safeguarding research participants from any harm that may result from the research process and the researchers involved (Israel 2016; Tolich and Iphofen 2019; Hay and Israel 2022; Liamputtong et al. 2022; Liamputtong 2023). When conducting cross-cultural research, ethical and moral responsibility is particularly crucial since researchers are likely to work with individuals who are more marginalized and vulnerable, often living in poverty, lacking education to understand research protocols, and feeling too powerless to express their concerns or resist the power of researchers (Howitt and Stevens 2016; Broesch et al. 2020; Gergan and Smith 2021; Henn et al. 2022). Thus, it is imperative for researchers to be responsible and take their ethical obligations seriously (Liamputtong 2010, 2020, 2023). Researchers have raised ethical and moral concerns regarding cross-cultural research, including exploitation, harm to the community group, and dissemination of inaccurate research findings (Broesch et al. 2020; Smith 2021; Henn et al. 2022). While these moral issues are applicable to people in general, individuals from different cultural settings may be affected more due to complex historical, political, social, and cultural agendas. Therefore, before conducting any cross-cultural research, especially research concerning historically marginalized groups, researchers need to evaluate the relevance of their research to the cultural groups and the potential outcomes, ensuring that the research will benefit the community rather than harm them (Broesch et al. 2020; Liamputtong 2010, 2020, 2023; Smith 2021; Hay and Israel 2022; Henn et al. 2022). The principle of primum non nocere (first do no harm) has become widely accepted as an ethical principle in all research disciplines. When conducting research that involves people from cross-cultural settings, researchers must consider the aim of “first, do no harm” throughout the research process, from selecting the methodology to disseminating the research findings, and remain vigilant about any potential harm that may befall their participants (Ziersch et al. 2019; Hay and Israel 2022; Liamputtong et al. 2022; Liamputtong 2020, 2023). The researchers’ responsibility is to ensure the physical, emotional, and social well-being of their research participants and ensure that their participation will not adversely affect them (Ziersch et al. 2019; Liamputtong et al. 2022). Conducting research can unintentionally put participants in danger (Liamputtong 2010, 2020, 2023). Therefore, researchers need to pay special attention to the risks involved in the research process. Participants may have to deal with the consequences of the researcher’s actions, as well as the disclosure and publication of research findings (Liamputtong 2010, 2020; Ziersch et al. 2019). Psychological and
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emotional distress may also occur to the participants in cross-cultural research, in addition to physical and social harms. “Cause no harm” applies to how researchers present their findings. Researchers must ensure that the research participants or their community will not be easily identifiable when reporting their findings (Liamputtong 2010, 2020, 2023; Broesch et al. 2020). To protect the identity of research participants, researchers can adopt various strategies, such as using pseudonyms for participants’ real names when presenting their verbatim explanations (commonly practiced in qualitative papers) and giving research sites a fictitious name. By taking these measures, researchers can minimize the risk of causing harm to participants or their communities through the dissemination of research findings (Fryer 2019; Liamputtong 2010, 2020, 2023).
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Cross-Cultural Research and Languages
Undertaking cross-cultural research poses significant linguistic and cultural challenges for researchers since they may have little in common with their research participants in terms of language and cultural background (Hennink 2008; Lincoln et al. 2016; Fryer 2019; Mackenzie 2019; Stevano and Deane 2019; Schmidt-Sanem 2020; Liamputtong 2010, 2020, 2023). As a result, differences in language and meanings conveyed can create issues that have implications for research findings (Lincoln et al. 2016; Krzywoszynska 2017, 2020). The potential for misunderstandings raises ethical concerns, as it can lead to misinterpretation of research findings (Lincoln et al. 2016; Goitom 2020; Krzywoszynska 2017, 2020). Language plays a crucial role in qualitative research not only during the research process but also in the interpretation of resulting data (Fryer 2019; Gawlewicz 2016; Lincoln et al. 2016; Krzywoszynska 2017, 2020; Liamputtong 2010, 2020, 2023; Schmidt-Sanem 2020). Through language, research participants can express the meanings of the world and interact with researchers, leading to a better understanding of the participant’s social world and interpretation of their context (Hennink 2008; Fryer 2019; Gawlewicz 2016; Lincoln et al. 2016; Mackenzie 2019). Therefore, language is a fundamental tool for qualitative researchers to comprehend human behavior, sociocultural processes, and cultural meanings (Krzywoszynska 2017, 2020; Fryer 2019; Goitom 2020). Conducting cross-cultural qualitative research complicates the role and influence of language in qualitative research (Liamputtong 2023). Many qualitative research projects are carried out by researchers who are not familiar with the language of the research participants, which is particularly evident in cross-national research where the language of the researchers differs significantly from that of the participants, rendering the researchers as outsiders (Liamputtong 2023). It can also be observed in national research where researchers conduct research with minority groups, such as immigrants who may prefer to speak in their own language. Although it is generally assumed that researchers must use the language of the participants to gain a fuller understanding of the issues under investigation (Lopez 2003), this may not always be the case. Some participants may be very fluent in
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English, particularly for immigrant groups who have established themselves in a host country, such as the UK, Canada, the USA, New Zealand, and Australia. These individuals may be more than happy to be interviewed in English rather than their native language. Nonetheless, researchers must exercise caution and sensitivity to ensure that they fully understand the language and cultural context of their participants to ensure accurate and respectful research outcomes.
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Conclusion and Future Directions
This chapter has demonstrated the significant influence of various social determinants, including social, economic, historical, political, and cultural, on the health and wellbeing of individuals. Among these determinants, social determinants have been identified as the fundamental foundation of good health or illness. They are also the root cause of health inequities, the unjust and preventable discrepancies in health status that are observed worldwide. Within the social determinants of health, the cultural aspects of the framework are referred to as cultural determinants of health. These cultural determinants encompass the patterns of beliefs, practices, values, and social norms that are shaped by culture and can influence health beliefs, behaviors, helpseeking patterns, or health care utilization of individuals and groups. Therefore, it is crucial to consider the complexity of individual and cultural influences on health. In this postmodern world, cross-cultural research has become increasingly vital, particularly as many people have been, and still are, marginalized and vulnerable due to power imbalances such as those created by colonial researchers. This chapter highlights that qualitative research is particularly well-suited for cross-cultural projects, because it enables researchers to obtain answers that are more relevant to the research participants. The chapter also emphasizes the importance of ethical and language issues in cross-cultural research, which can benefit researchers who are embarking on their own cross-cultural endeavors. In recent years, the world has faced various crises, such as wars, pandemics, environmental degradation, and starvation, which have adversely impacted people’s health, well-being, and lives. Qualitative researchers can continue to play a crucial role in understanding how people cope with these adversities and how nations can assist them in living a healthier life. This chapter can serve as a starting point for many researchers who wish to contribute to creating a better world for everyone, wherever they may be.
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Ecofeminist Participatory Action Research for Planetary Health Naomi Joy Godden, Trimita Chakma, and Aaron Jenkins
Contents 1 2 3 4
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Feminist Participatory Action Research (FPAR) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Example of FPAR for Climate Justice and Women’s Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Planetary Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Indigenous Wisdoms and Methods Are Central to Planetary Health . . . . . . . . . . . . . . . . 4.2 Example of Planetary Health Participatory Action Research: Watershed Interventions for Systems Health in Fiji (WISH-Fiji) – Transforming Place-Based Management in Fijian Watersheds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 EcoFeminist Participatory Action Research for Planetary Health . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Interconnectedness of Oppressive Systems and Interconnectedness of Systems of Vitality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Multispecies Justice and Rights . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Centering Indigenous Wisdoms and Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Place as Co-researcher . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5 Relationality, Care, Love, and Solidarity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6 Action and Activism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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N. J. Godden (*) Centre for People, Place and Planet, Edith Cowan University, Bunbury, WA, Australia e-mail: [email protected] T. Chakma Feminist Participatory Action Research Academy, Seoul, South Korea e-mail: [email protected] A. Jenkins Centre for People, Place and Planet, Edith Cowan University and University of Sydney, Joondalup, WA, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_47
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Abstract
Over the past few decades, feminist scholars, activists, and communities around the world have undertaken feminist participatory action research (FPAR) as a critical methodology of research and activism. FPAR offers a democratic, community-led process whereby community members, especially people experiencing marginalization and disadvantage, examine and document lived experiences of injustice, and use this knowledge to strategically advocate for structural change. Through FPAR, communities seek to transform power as it manifests in systems such as colonialism, patriarchy, neoliberal capitalism, and racism, informed by principles of intersectionality and solidarity and using creative and arts-based methods to honor diverse forms of knowledge. However, current crises such as climate change, environmental degradation, war, and pandemics have multiple and intersecting impacts on people, places, and the planet. The emerging field of planetary health recognizes the interdependent vitality of all natural and anthropogenic systems. When FPAR is analyzed from the frame of planetary health, the authors identify that the methodology is humancentered, and marginalizes the rights, agency, and voices of nature. In this chapter, the authors propose an extended methodology of EcoFeminist Participatory Action Research (EcoFPAR) for planetary health that prioritizes Indigenous wisdoms and methods, promotes inquiry, activism, and reciprocal humanenvironment relationships from a systems lens, and seeks justice for the organic and the inorganic. The authors share case studies of FPAR for women’s health and PAR for planetary health and examine the opportunities and challenges of EcoFPAR as a transformative methodological paradigm for the interconnected health and well-being of humans and more-than-humans. Keywords
Feminist participatory action research · Planetary health · Multispecies justice · Indigenous methods · Ecofeminist participatory action research
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Introduction
In its Sixth Assessment Report, the Intergovernmental Panel on Climate Change (IPCC) gave its strongest call yet for urgent action on climate change: The cumulative scientific evidence is unequivocal: Climate change is a threat to human wellbeing and planetary health. Any further delay in concerted anticipatory global action on adaptation and mitigation will miss a brief and rapidly closing window of opportunity to secure a liveable and sustainable future for all (IPCC 2022).
Climate change and many other forms of human-driven environmental change have exposed that degradation of our environment has significant impacts on human
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health, with these impacts being experienced most by people and communities who are least responsible for driving these changes (IPCC 2022). For example, in 2020 the Western Australian government held the world’s first public inquiry into climate change and health. The inquiry report found that climate change has wide-ranging impacts on human health in Western Australia (WA), including injury or death resulting from extreme weather events; heat-related illness; mental health impacts of extreme weather events, anxiety and stress about climate change; asthma or respiratory distress triggered by bushfire smoke; air pollution impacts; mosquitoborne diseases; other infectious diseases, such as gastroenteritis; reduced food quality and security; reduced water quality and security; and population displacement (Weeramanthri et al. 2020). Importantly, these impacts are not equally experienced across the WA community. It is well understood that climate change is a direct product of structures of injustice and unequal power, such as capitalism, patriarchy, colonialism, and racism, and that climate change exacerbates existing injustices and inequalities (Bell 2016; Malin and Ryder 2018; Tuana 2019). Within this structural context, people in WA who are at most risk of poor health outcomes from climate change are those who experience systematic disadvantage, including Aboriginal and Torres Strait Islander peoples, women, LGBTQIA+ peoples, people of color, and culturally and linguistically diverse groups, newly arrived migrants and refugees, low-income peoples, rural and remote communities, people experiencing homelessness, children and young people, elderly peoples, incarcerated peoples, people with a pre-existing health condition or a disability, and frontline workers and emergency responders (Weeramanthri et al. 2020). Globally, the evidence is overwhelming that the health, well-being, and vitality of humans are connected to the health, well-being, and vitality of natural ecosystems (IPCC 2022; Whitmee et al. 2015). This, of course, is not new knowledge – Indigenous peoples around the globe have lived by an ethos of interconnectedness between humans and nonhumans for millennia (Redvers et al. 2022). International bodies such as the IPCC, the International Panel on Biodiversity and Ecosystem Services (IPBES), the World Health Organization (WHO), and UN Convention on Biological Diversity (CBD) Joint Work Programme on Biodiversity and Health are now promoting the intersections and interdependence of human and environmental health; referring to the emerging field of planetary health, which recognizes the interdependent vitality of all natural and anthropogenic ecosystems (Prescott et al. 2018). Such whole-of-systems thinking offers a significant advancement in the field of public health. Further, a recent article about the Indigenous determinants of planetary health (Redvers et al. 2022) promotes Earth-centered methodologies that seek to understand and enhance the interconnected health and well-being of humans and nonhumans. It is within this frame that the authors seek to examine and extend Feminist Participatory Action Research (FPAR) as an activist methodology for advancing planetary health. Over the past few decades, FPAR has been increasingly adopted by activists, scholars, and civil society organizations as a community-led approach to understanding injustices and informing collective action for structural change (Chakma
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2016; Fine and Torre 2019; Godden et al. 2020; Lykes and Hershberg 2012; McDiarmid et al. 2021). As a methodological paradigm, FPAR directly challenges hierarchical and technical conceptualizations of knowledge and research, by recognizing the plurality of knowledges, and valuing community expertise from their own lived experiences (Ewan 2019; Lorenzetti and Walsh 2014). Through FPAR, community members are supported and celebrated as “co-researchers” to co-design and implement participatory research methods that document gendered and other intersecting injustices and undertake activism to demand their collective human rights and self-determination (Fine and Torre 2019; Godden 2018; Kirby 2011). FPAR offers a rights-based, democratic methodology to examine and promote human health and well-being, and there are various international examples: Hayhurst et al. (2018) applied Postcolonial FPAR to examine the power dynamics of a sport for development program in Nicaragua that used a curriculum focusing on genderbased violence prevention and sexual reproductive health and rights; Tolhurst et al. (2012) undertook FPAR with advocates, researchers, and practitioners to explore gender mainstreaming and international health policy and practice; and, Ponic and Frisby (2010) analyzed inclusion in health promotion through a 6-year communitybased health promotion and feminist participatory action research project in Canada. The authors identify an opportunity to explore how FPAR as a methodology can be extended, both theoretically and practically, to EcoFeminist Participatory Action Research (EcoFPAR) to examine and promote planetary health; that is, the health and well-being of all that is organic and inorganic within the nested systems of our planet. Such an idea combines human rights and the rights of nature; the centering of Indigenous knowledges and methods in FPAR processes; and expanding conceptualizations of agency (for humans and more-than-humans) in relationality, participation, and action. To write this chapter, the authors bring together diverse worldviews and experiences as scholar-activists in ecosocial work, gender justice, and environmental science. Naomi is a Wadjela (non-Indigenous) woman living on the unceded lands of the Wardandi Aboriginal peoples of South Western Australia. Trimita is a Chakma Indigenous woman from the Chittagong Hill Tracts of Bangladesh. For the past decade, Naomi and Trimita have worked together and separately to support grassroots communities and women’s rights groups in the Asia Pacific region to apply FPAR to tackle injustices and demand their human rights. Aaron is an Eastern European and Native North American (Cherokee) man who has lived and worked for decades with communities of the Pacific Islands on community-based wetland conservation for systems health. Together, the authors have written this chapter to explore the possibilities of EcoFPAR as a methodology for planetary health. This chapter begins with an overview of FPAR as a collectivist methodology for ecosocial justice and structural change, with examples of FPAR projects regarding climate change and women’s health in the Asia Pacific. This is followed by a discussion of planetary health, and the interconnectedness of the health of humans, and the health of “more-than-humans.” It includes an example of planetary health research for watersheds in Fiji. The chapter then analyzes opportunities and challenges for an extended methodology of EcoFPAR for planetary health.
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Feminist Participatory Action Research (FPAR)
Feminist participatory action research (FPAR) is a methodological paradigm for undertaking feminist research and activism for social transformation. FPAR builds on the principles and processes of Participatory Action Research (PAR) – a method of critical pedagogy aimed at empowering marginalized groups through their participation in research and action to advocate for structural change (Fals-Borda and Rahman 1991; Freire 1970). Unlike PAR, FPAR purposefully focuses on gendered injustices (Lorenzetti and Walsh 2014) while taking into consideration other forms of intersectional injustices across social categories such as age, location, wealth, ability, ethnicity, race, Indigeneity, migration or displacement status, and sexual orientation (Reid and Frisby 2008; Schurr and Segebart 2012; Tolhurst et al. 2012). The “F” in the FPAR also ensures the integration of feminist notions of critical reflexivity to address power imbalances among those involved in processes of research and action (Ewan 2019; Lorenzetti and Walsh 2014). FPAR challenges the hierarchical model of traditional academic research by situating research participants as “co-researchers” or “partners” who make collective decisions about research processes using a democratic approach (Ewan 2019; Fine and Torre 2019; Godden 2017; Kirby 2011). Through cycles of action and reflection (Kemmis et al. 2014; Reid and Frisby 2008), co-researchers collectively design and implement their research to generate knowledge and undertake action to address structural injustices. Co-researchers, especially women experiencing marginalization and disadvantage, examine and document their lived experiences of injustice using participatory and arts-based data collection and analysis methods such as storytelling, drawing, photovoice, mapping, timelines, role play, theater, song, and dance (Godden et al. 2020; Hayhurst 2017; Seppälä et al. 2021; Távara 2019). These methods encourage inclusion, accessibility, and participation of marginalized groups to generate diverse forms of knowledge. The evidence generated from FPAR is used to inform and underpin women’s collective action for structural change through grassroots feminist movements (Chakma 2016; Lykes and Hershberg 2012; Reid et al. 2006). Encouraging grassroots women with limited access to power and resources to challenge patriarchal power structures through FPAR can be a risky business. Ethical concern surrounding safety, security, and political risks for marginalized women and communities engaging in the FPAR process is considered a major limitation in FPAR (Godden et al. 2020). Moreover, resistance work can increase marginalized women’s labor, who are already overburdened with a large share of unpaid care and domestic work (Hayhurst 2017). There is also the risk of tokenized participation of marginalized groups where FPAR processes are not sufficiently inclusive or accessible (Godden 2017). These limitations can be addressed by collectively and continually assessing and mitigating risks when applying FPAR action and reflection cycles. This includes a dialogical process of Free, Prior, Informed, and Continuing Consent (FPICC) as per the United Nations Declaration on the Rights of Indigenous Peoples (United Nations 2007). Various scholars also demonstrate how FPAR methodology can be strengthened by integrating decolonial, postcolonial, and other critical lenses (e.g., Agboka 2014; Blodgett et al. 2011; Fine and Torre 2019; Gill et al. 2012; Schurr and Segebart 2012; Zanotti et al. 2020).
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Example of FPAR for Climate Justice and Women’s Health
Feminist activists, scholars, and grassroots communities have engaged FPAR to demand ecosocial and climate justice that tackles threats to women’s health. Here, the authors share case examples that illustrate how FPAR can raise the critical consciousness of grassroots communities about the intrinsic link between human health and well-being and the changing environment and mobilize action for protecting and restoring planetary health. Between 2017 and 2019, the Asia Pacific Forum on Women, Law and Development (APWLD) supported grassroots women’s rights organizations across Asia to undertake Climate Justice Feminist Participatory Action Research (CJ-FPAR) projects for advancing the political agenda of climate justice. APWLD is a secretariat organization representing 260 women’s rights member organizations. APWLD’s CJ-FPAR program is driven by the political analysis that the root causes of ecosocial and climate injustices are upheld and driven by a neoliberal patriarchal capitalist economy, which is fueled by globalization, fundamentalism, and militarism. APWLD contends that grassroots women situated in the Global South suffer disproportionate impacts of climate change due to existing inequalities and chronic marginalization driven by this system of capitalist patriarchy (APWLD 2015 cited in Godden et al. 2020). In response to climate injustices in the region, APWLD used FPAR as a central methodology to support its nine partner organizations from Bangladesh, Cambodia, India, Myanmar, Nepal, Pakistan, Sri Lanka, Thailand, and Vietnam to enhance their climate activism. Over a period of 2 years, partners and communities collectively documented gendered injustices of climate change in their communities and used the new knowledge, tools, and resources produced through the FPAR process to engage in strategic advocacy and strengthen the architecture of the feminist climate justice movement. Some of these communities documented how climate change coupled with development injustices were damaging the health and well-being of women, the community, and the surrounding environment. In Cambodia, women villagers in Kbal Romeas explored how the construction of dams as a means of development was blocking two major rivers and posing environmental damage such as the destruction of fish nesting areas (APWLD and Himalayan Association [HA] 2019). Women from Udayapur district in Nepal (APWLD and Chetana Mahila Semuha [CMS] 2019), North-East India’s Assam (APWLD and North East Effected Area Development Society [NEADS] 2019), Pakistan’s Sindh province (APWLD and Roshni Tarqiyati Tanzeem [ROSHNI] 2019), BacKan province in Vietnam (APWLD and Agriculture and Forestry Research and Development Centre for Mountainous Region [ADC] 2019) and Chin state of Myanmar (APWLD and Chin Committee for Emergency Response and Rehabilitation [CCERR] 2019) documented how various extreme weather events such as flash floods, irregular rainfall, rising temperature, heavy rainfall, long dry spells or landslides were destroying productive farmland and habitats. Pi Ki Iang, a woman living in the resettlement area in the suburbs of Hakha, the capital city of Chin state shared:
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When it rains from the sky, some leaves are immediately visibly changing their colour, close to being dead. . . Rain is like acid. That’s why this irregular weather destroys and is unfavourable for our livelihood (APWLD and CCERR 2019, p. 2).
Changes in weather patterns, degrading soil quality, and diseases saw reduced agricultural production and loss of varieties of vegetables and plants. Women’s increased burden of labor to cope with these challenging circumstances took a toll on their health, with deepened poverty in these communities. Similarly, Indigenous women living in Northern Thailand documented how the dry season was causing acute water shortages, impacting their health and agricultural production (APWLD and Indigenous Women’s Network of Thailand [IWNT] 2019). Alongside deteriorating human health, the forests were changing, aquatic animals were disappearing, and there were more frequent landslides in the mountains. In Sri Lanka, women living in a resettled community that had been displaced by a landslide in 2014 documented how the lack of basic civic amenities such as access to clean drinking water, health clinics, space for home gardening or garbage disposal, and management systems were affecting the community’s health and causing nutritional deficiencies (APWLD and We Women Lanka [WWL] 2019). Hundreds of women from these communities engaged in the CJ-FPAR process and used participatory methods such as power mapping to identify advocacy targets and allies; social mapping to make decisions about local resources; body mapping to identify women’s health issues; and participatory survey and ranking to make collective decisions about research priorities. They used a range of creative tools such as plays, storytelling, billboards, radio, street theater, posters, photographs, and wall paintings to share their lived experiences. The grassroots partner organizations shared their evidence through media campaigns, community radio programs, documentaries, and petitions to advocate for just and fair policies and practices. For example, in Vietnam, Tay Indigenous women led a campaign to revive the Indigenous traditional practice of using organic banana compost instead of pesticides to protect soil from degradation. In Thailand, Indigenous women advocated for rebuilding, cleaning, and restoring wells in their villages to address acute water shortages at the sub-district administration. In Nepal, women planted over 1000 plant varieties in the Kang Khola area to fortify river embankments against flooding. In Pakistan, women led a signature campaign in support of restoring forests in their area and advocated for the implementation of laws and policies to address environmental protection, deforestation, and pollution by industries and oil and gas fields. The FPAR projects affirmed that the health and well-being of communities and the environments in which they live are interlinked. Although this case study demonstrates some links between women’s health and environmental change, a significant gap in FPAR is its focus on honoring the voices and experiences of women and other marginalized groups of people (Reid and Frisby 2008). FPAR does not adequately involve more-than-human actors that suffer the consequences of oppressive structural systems. The ongoing intersecting crises of pandemics, war, the climate crisis, and other “wicked problems” pose threats to human civilization and the natural systems on which it depends. Human activities on
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earth – such as overexploitation of natural resources and pollution – and impacts of climate change – such as slow onset and extreme weather events – have caused irreparable environmental degradation, the collapse of ecosystems, and loss of biodiversity (IPBES 2019). The ecosystems on which humans and all other species depend are deteriorating more rapidly than ever, with one million animal and plant species at risk of extinction within decades (IPBES 2019). To address the crisis of planetary health, transformative changes are required within the world’s economic, social, and political systems to reduce the human footprint and transform humans’ dominant, oppressive relationship with nature.
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Planetary Health
Around the same time, the Sustainable Development Goals (SDGs) were internationally endorsed in 2015, the academic community launched the field of Planetary Health with the release of the Lancet-Rockefeller Commission Report (Whitmee et al. 2015). This commission defined planetary health as the achievement of the highest attainable standard of health, wellbeing, and equity worldwide through judicious attention to human systems — political, economic, and social — that shape the future of humanity and the Earth’s natural systems that define the safe environmental limits within which humanity can flourish (Whitmee et al. 2015, p. 1978).
As this definition is largely viewed through an anthropogenic lens, the authors prefer a more holistic and inclusive notion that “planetary health, inseparably bonded to human health, is the interdependent vitality of all natural and anthropogenic (eco) systems” (Prescott et al. 2018, p. 3). The academic field of planetary health embraces systems-level approaches to understanding complex relationships between humans and natural systems, building on general Social-Ecological Systems (SES) theory (Ostrom 2009). However, such theories still foster a dichotomous relationship between natural and anthropogenic systems, and a more unified and non-dualistic definition of planetary health points to the notion of beyond-human “systems health” – most recently described by Wakwella et al. (2022, p. 3) as the emergent result of functioning interdependencies, interactions and feedbacks between ecological and socio-cultural settings, behaviour, and physiology, nested across microlevel (e.g., communities of microbes), meso-level (e.g., watersheds) and macro-level (e.g., global climate patterns) domains.
Recognizing these complex connections that exist between the health of humans, nonhuman animals, environments, and the planetary system at large are not conceptually new. Such ways of understanding health are rooted in ancient and diverse ways of knowing, central to many Indigenous knowledge systems, and dating back at least as early as Hippocrates in Western knowledge traditions (Buse et al. 2018).
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Indigenous Wisdoms and Methods Are Central to Planetary Health
The relatively recent academic field of planetary health is a Western construct that, while laudable in serving as an umbrella to rally scientists and policymakers around the interface of ecosystems, humans, and other species through interdisciplinary collaborations, is rooted in a long-established “unified systems” view embodied by Indigenous ways of knowing (Redvers et al. 2020). As such, Indigenous wisdoms and methodologies are central to the practice of planetary health. Many Indigenous epistemologies are intricately connected with and honor all natural elements, in contrast to an anthropocentric worldview that continues to permeate global climate and “ecosystem service” discourse and action. Recently, a group of Indigenous Elders, scholars, practitioners, land and water defenders, and knowledge-holders defined the determinants of planetary health from an Indigenous perspective (Redvers et al. 2022). First and foremost, at the planetary (Mother Earth) level is respect for the feminine, as Indigenous worldviews often recognize Mother Earth’s generative power as the primordial First Mother. Indigenous stories often reflect this feminine role of creation, order, and regeneration and, in First Nations, women are often the keepers of cultural identity and caretakers of the natural environment, thereby fostering strong communities and networks (Redvers et al. 2022). This important paper elucidates the central requirement for planetary health is ultimately the human capacity to recognize interconnectedness as a fundamental reality – that humans are Nature. This realization can be supported by embracing Indigenous scientific methodologies that are contextual, holistic, symbolic, nonlinear, relational, not limited by time, and use collective observation to explain natural phenomena through real and metaphoric narratives (Bartolomé 2020). Redvers et al. (2022, p. e112) stress that society “cannot solve complex problems from the same worldview that created them in the first place, as it will continue to perpetuate a disconnect between us and the planet as ‘relatives’.”
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Example of Planetary Health Participatory Action Research: Watershed Interventions for Systems Health in Fiji (WISH-Fiji) – Transforming Place-Based Management in Fijian Watersheds
A case example of watershed interventions in Fiji as planetary health participatory action research is shared here. Watersheds, as the linked geographical spaces in which water flows, are a subsystem through which driving forces of anthropogenic change manifest (Jenkins et al. 2018). These drivers act within complex socioecological systems that are hierarchically scaled, and composed of subsystems nested within larger systems; exemplifying how upstream effects have downstream consequences, and how resultant downstream change also can drive upstream effects
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in positive or negative feedback cycles (Jenkins et al. 2018). Watersheds have long been recognized as coherent and ecologically representative units, offering important opportunities for place-based interventions to transform systems health via preventative approaches, which simultaneously achieve multiple co-benefits for the health of the public and their lived environment. Indeed, over 10,000 years ago, Papua New Guinean highlanders managed “complex nested cascades” of irrigated watersheds to drain highland swamps for agriculture (Ballard 2001), and pre-colonized Hawaiians managed socio-ecological processes within watersheds as ahupua’a, distinct watershed governance units, to enhance food production and social well-being (Kaneshiro et al. 2005). The Watershed Interventions for Systems Health in Fiji (WISH Fiji) project embraces participatory knowledge co-production and action-oriented research to identify risks, prioritize interventions, and monitor responses within a range of subsystems (i.e., national, watershed, community, individual, microbiome) (McFarlane et al. 2019). WISH Fiji used screening filters and local knowledges by national and provincial government staff to collaboratively identify five watersheds with a high incidence of water-related diseases (Fiji’s “three plagues” of leptospirosis, typhoid, and dengue) in the previous 2 years, and high-risk to downstream environmental health (e.g., sediment smothering of coral reefs). A central approach at the project outset was to understand where risk factors for each disease in human populations overlapped with risk factors for downstream environmental impact (e.g., increased erosion and coral disease) and thus identify common risks to “systems health” and design a series of instruments to collect information about these baseline risks. Through iterative community consultations to obtain FPICC, WISH Fiji enrolled 311 households across 29 rural Fijian communities to participate in the project and study the effects of co-designed interventions at multiple levels. WISH Fiji synthesized the baseline data to identify key risks to system health at the household, village, and broader landscape levels. These risks were communicated to community water and resource management committees and district and provincial leaders as part of participatory co-design to develop water and sanitation safety plans for each community. Over two hundred priority risk reduction interventions were identified by the local committees across eight main categories: health systems surveillance; crosssectoral coordination; access to clean water; land use practices; livestock and waste management; sanitation infrastructure; village drainage; and personal hygiene. This project continues to track co-implemented changes to factors that reduce the risk of water-related disease and improve both in-stream and downstream environmental conditions. While the direct evaluation of impacts on public health is somewhat limited by a failure of health systems to geolocate confirmed cases of illness, the project is working to overcome this via direct community participation in syndromic surveillance of symptoms associated with water-related diseases. The WISH Fiji project is a model of cross-sectoral coordination that efficiently progresses many Sustainable Development Goals but requires sustained investment in interventions across nested scales to realize full benefits, particularly for nature-based solutions that exhibit lagged responses.
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This example of planetary health participatory action research has complex equity issues that are concurrently interspecies, intergenerational, and inter-elemental, which are rarely addressed in watershed management. The ecosystem services framing for watersheds (or any other type of ecosystem), while useful in making the benefits of ecosystems more relevant to decision-makers, is both insufficient and unjust as it confers values based on human perception and/or calculable economic measures, rather than valuing ecological diversity for its own sake (Foster et al. 2019). Resultant interventions in watersheds then become narrowly focused on cost-effectiveness, economic opportunity, and the perceived value of natural capital, and become highly susceptible to political exploitation. It is crucial to evolve new processes toward holistic ways of thinking about growth and development that redefine notions of economic value, productivity, and equity to also consider the health and well-being of nonhuman components. The question of health (or resilience) for whom should then be extended to the interest of all resident species and their intertwined ecosystems (Adger et al. 2021). In doing so, we must consider that humans are composed of both organic and inorganic elements, as explained beautifully by Buddhist scholar and activist Thich Nhat Hanh (2017): When we look into our cells as a human being we see that the human being is made only of non-human elements. We have the mineral element in us, we have the element of vegetable in us and we have the element of ‘animal’ in us. Not only do we have human ancestors but we also have animal ancestors and vegetable ancestors and also mineral ancestors; and our ancestors do not belong only to the past – they belong to the present.
Redefining watershed health in this light can help to foreground equitable consideration and empathy for both biotic and abiotic parts of social-ecological systems. This whole-of-ecosystem health ethic provides greater agency to individuals and communities to advance solutions not easily measured in financial terms, particularly those that foster biodiversity conservation and improve subjective well-being, rather than profits (Foster et al. 2019). Intergenerational equity is also considered, with practitioners carefully balancing their actions as watershed custodians, responsible for ancestral bequeathments, and the health and well-being of present and future generations of inhabitants. The future inhabitants of the watershed (and the planet) have equal rights to a healthy setting as those that are currently managing the resources and should be left with a healthy system in which to thrive. This requires “cathedral thinking,” argued by Krznaric (2020) that, just as medieval cathedrals took centuries to build – involving generations of craftspeople devoting their entire lives to a task despite no chance of seeing the completed work – it is essential to plan and intervene to benefit future generations and the planet. This is thinking beyond ourselves and our narrow interests and lifespans. Many current challenges to sustainability and planetary health – such as climate change, water, and energy crises – require humans to stretch our time horizon when planning actions to consider intergenerational effects beyond our own lives.
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EcoFeminist Participatory Action Research for Planetary Health
In this section, the authors extend the theory and practice of FPAR as a decolonial and critical methodology to promote and support planetary health. The authors name this methodology EcoFPAR for planetary health, which is informed by Indigenous traditional knowledges and ecofeminism. As outlined earlier, Indigenous traditional knowledges (wisdoms and methods) are central to planetary health, promoting unified and interconnected systems that honor all natural elements (Redvers 2021). Further, ecofeminism focuses on the “complex interrelationship between environmental degradation and women’s subordination” (Foster 2021, p. 192), whereby patriarchal capitalism oppresses and exploits women and nature. Ecofeminism sees humans as part of nature and understands that “the health of (women’s) bodies is a barometer for planetary health” (Foster 2021, p. 202). The authors’ view of ecofeminism incorporates Indigenous perspectives that “violence against Mother Earth is violence against women, and vice versa” (Redvers et al. 2022, p. e158). It also prioritizes Indigenous feminisms that promote Indigenous resistance, selfdetermination, sovereignty, and land rights (Snooks et al. 2021, p. 164). The authors propose that ecofeminism is for everyone, of all genders; and EcoFPAR is a methodology for more than women. EcoFPAR for planetary health aligns with the work of ecofeminists and post-humanists to “centre relationality, decentre the human and attend to the vibrant agency of more-than-human beings” (Bawaka Country et al. 2016, p. 458). Importantly, they do not claim these knowledge systems as their own, and they are deeply indebted to Indigenous Elders, thinkers, methodologists, and activists who generously share their wisdoms in the public domain. In the subsections that follow, some opportunities and challenges of EcoFPAR for planetary health are analyzed in the following themes: Interconnectedness of oppressive systems and interconnectedness of systems of vitality; Multispecies justice and rights; Centering Indigenous wisdoms and methods; Place as co-researcher; Relationality, care, love and solidarity; and Action and activism.
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Interconnectedness of Oppressive Systems and Interconnectedness of Systems of Vitality
FPAR has an unapologetic political agenda for structural change (Chakma 2016; Lykes and Hershberg 2012) and supports communities to understand the interconnectedness of oppressive systems. In Trimita and Naomi’s FPAR work in the Asia Pacific, women’s rights organizations have supported communities to build consciousness around intersecting systems of oppressive power that cause gendered injustices, including globalization, fundamentalisms, militarism, and patriarchy (Godden et al. 2020). Communities undertaking FPAR for climate justice have done this through participatory mapping of interrelationships between social and economic forces such as extractivist multinationals, colonial powers and institutions,
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and the military. Reflecting Freire’s model of consciousness-raising (Freire 1970), this analysis enables communities to investigate and interrogate their lived experiences of injustice, and collectively mobilize for structural changes such as new legislation, policies, and paradigm shifts. It was identified that conducting EcoFPAR through a planetary health frame opens up possibilities for communities and places to also examine the interconnectedness of systems of vitality. This worldview embraces and privileges complex relationships between people and the planet. An EcoFPAR process extends the practice of interconnectedness by giving space for human communities to explore their individual and collective relationships with the “more-than-human.” This might include collectively learning about Social-Ecological Systems and planetary health, along with exploring Indigenous worldviews and knowledges in their place (Redvers 2021) and identifying localized spiritual and cultural concepts of connectedness between all elements. Practical activities that may support this include co-design and data collection processes being embedded in place and nature, and integrating spiritual and cultural practices of song, story, and dance as data. For example, York (2014) examined the Khanyisa program in rural KwaZulu Natal in South Africa, which places young Zulu men and boys in wilderness settings and utilizes the Indigenous concept of Ubuntu to shift their masculine identities to a positive direction. Ubuntu is the South African concept for interconnectedness and interdependence – “that we can only be human in relation to others” and promotes collective solidarity through “love, caring, tolerance, respect, empathy, accountability, and responsibility” (York 2014, pp. 56–58). York’s evaluation found that the young men’s embeddedness in the wilderness fostered relational understanding, with significant transformation in their perception of gender roles, moving from that of male domination and female inferiority to a more equality-based, democratic view. EcoFPAR also has a political imperative to promote dismantling oppressive systems and restoring systems of vitality. Prefigurative politics are helpful here, encouraging communities to consider how they can “prefigure a future society at a micro level with the aim to instantiate radical social change in and through practice” (Törnberg 2021, p. 83).
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Multispecies Justice and Rights
There is a significant opportunity for EcoFPAR to reconceptualize rights and intersectionality, shifting from a narrow focus on (women’s) human rights to the collective, inclusive, and interconnected rights, justice, and well-being of humans and more-than-humans. Like planetary health, a growing body of environmental justice literature has shifted from a human-centered frame of justice to considering multispecies justice and the rights of nature (see, for example, Celermajer et al. 2021; Tschakert 2022). Multispecies justice decenters humans and recognizes the “everyday interactions that bind individuals and societies to networks of close and distant others, including other people and more-than-human beings” (Tschakert et al. 2020,
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p. 5). It considers entanglements and the coexistence of “all bodies and lifeforms, organic and inorganic” (Tschakert et al. 2020, p. 5). This is also evident in some realms of public policy. For example, Latin American countries such as Ecuador and Bolivia have included sumak kawsay/buen vivir (good living) or suma qamaña/vivir bien (living well) in their constitutions, development plans, and public policies. Buen vivir is an alternative development model that is understood through Indigenous notions of harmony between people and environment, as a critique of capitalism, and as ecological post-developmentalism (Beling et al. 2021). Buen vivir encapsulates an equilibrium of the rights of people and nature and promotes a solidarity economy of equities, and social and ecological justice (Godden 2021). Connected to buen vivir is the growing movement of granting legal personhood to natural ecosystems such as rivers (Martuwarra River of Life et al. 2021). EcoFPAR embraces an extended rights and justice framework while recognizing that it may also create ethical challenges for communities as they deliberate actions in neoliberal, resource-scarce contexts to decide whose rights matter or take priority (Foster et al. 2019).
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Centering Indigenous Wisdoms and Methods
FPAR principles promote decoloniality and Indigenous methodologies, with inclusive processes of community consciousness-raising and critique of oppressive systems such as patriarchy, colonialism, capitalism, and racism, and the institutions, policies, and practices that uphold these systems (Chakma 2016; Godden et al. 2020; Lykes and Hershberg 2012; Reid et al. 2006). FPAR also embraces a wide range of participatory, creative, and arts-based methods for communities to collect and analyze data about their lived experiences (Hayhurst 2017; Seppälä et al. 2021; Távara 2019), including Indigenous methods such as storytelling and yarning (Sharmil et al. 2021). However, scholars of decolonial PAR suggest that PAR “must begin from an anti-colonial perspective and it must have a co-created, decolonizing/decolonial and transformative agenda” (Gill et al. 2012, p. 12). Decolonial PAR is concerned with power redistribution, knowledge, and place, and “the dismantling of settler colonialism” (Tuck and Guishard 2013, p. 5). Importantly, Tuck and Yang (2012), pp. 7–21) teach us that decolonization is not a metaphor for improving our societies – it “implicates and unsettles everyone” through “the repatriation of Indigenous land and life.” Decolonization involves making amends for colonial pasts by making decolonial futures in the present (Paradies 2020). Redvers et al. (2020) explain that the impacts of colonization alter Indigenous peoples’ behaviors, health, and relationships, which in turn alter the health of the planet. They argue for molecular decolonization – “the process of embracing, restoring, and honoring our original selves at the foundational level of being, in keeping with our original ancestral teachings to inform our future human story” (p. 13). The authors identify an opportunity for Indigenous ways of knowing, being, and doing, and an authentic commitment to making decolonial futures, to be proactively
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centered on the principles and practices of EcoFPAR for planetary health. EcoFPAR extends FPAR principles of social justice, community ownership, intersectionality, and movement building by promoting the Four Rs of Indigenous research: respect, relevance, reciprocity, and responsibility (Snooks et al. 2021). EcoFPAR must begin with the recognition, celebration, and prioritization of multiple and diverse Indigenous knowledges and lived experiences, including recognizing and resisting the ongoing impacts of colonization. This includes honoring the deep custodial and sacred relationships that Indigenous peoples have with land, sea, and sky. Furthermore, EcoFPAR can celebrate relationality between peoples and between people and nature, conceptualizing research as “collaborative allyship” with, by, and for Indigenous peoples, and embrace Two-Eyed Seeing to examine multiple worldviews, perspectives, and experiences of people and place (Snooks et al. 2021). Central to EcoFPAR for planetary health is a committed practice of “deep listening” (Ungunmerr-Baumann et al. 2022) and reflexivity (including about risks of appropriating Indigenous peoples’ knowledges). This is demonstrated in Sharmil’s (2021) Ph. D. study with Aboriginal community members in South Australia to make recommendations to improve local mental health and alcohol and other drugs (MH-AOD) comorbidity services for people aged 12 years and over. The non-Indigenous student collaborated with an Aboriginal Elder mentor, Aboriginal Working Party, and supervisors to codesign a methodology that amalgamated PAR with Aboriginal practices of Yarning, Dadirri and Ganma. Yarning is a widely used Indigenous method of talking together in a free-flowing, uninhibited process in a safe place (Bessarab and Ng’andu 2010). Dadirri means “deep listening” to the Ngan’gikurunggkurr people of the Daly River in the Northern Territory, Australia. It is the art of being present, being still, connecting with yourself and the environment in such a profound way that it creates space for deep relationships. Dadirri encourages cyclical, deep listening, and reflection (Ungunmerr-Baumann et al. 2022, p. 96).
Dadirri aligns with Freirian dialogue that promotes emancipation through transformative education (West et al. 2012). Ganma means two-way sharing of cultural knowledge through equal dialogue for the Yolgnu people from Arnhem Land in the Northern Territory (Muller 2012: 62). In their critical reflection on PAR-DadirriGanma using Yarning for Aboriginal health in the context of MH-AOD, Sharmil et al. (2021, p. 1) described the methodology as “equitable, democratic, liberating and life-enhancing, with real potential to develop feasible solutions.” The authors also contend that in EcoFPAR for planetary health, the making of decolonial futures requires that all people “attend to neglected Country” with loving, regenerative, and relocalized attachments to place (Paradies 2020, p. 5). EcoFPAR for planetary health can be conducted in place (in nature), in dialogue with the place (such as through deep listening), and through regenerative activities (such as replanting and rehabilitation) to express love and care. Furthermore, EcoFPAR supports Indigenous peoples to reflect on their processes of knowledge construction, action, and resistance (Távara 2019), while also supporting non-Indigenous peoples to engage with truth-telling and decolonization.
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Place as Co-researcher
People who engage in FPAR processes are not participants but co-researchers (Ewan 2019; Fine and Torre 2019; Godden 2017; Kirby 2011), reflecting a democratic imperative to dismantle power relationships between academia and “the researched” (Chakma 2016). The planetary health lens prompts us to reconsider participation: how can places, ecosystems, and more-than-human beings be “co-researchers” in EcoFPAR processes? Place is both a location and a meaning (Brown and Weber 2013), and a “sense of place” encompasses “place attachment, dependence, identity, meaning and character,” all of which shape human interactions with nature and contribute to well-being (Masterson et al. 2017). The authors propose that in EcoFPAR for planetary health, place has agency and voice as co-researcher, alongside and in relationship with people. This begins with learning from Indigenous conceptualizations of places as living entities (Redvers et al. 2022; Sangha et al. 2015). For example, Martuwarra River of Life et al. (2021, p. 13) explain that for First Nations peoples of the Martuwarra Fitzroy River, “the river is already a living being with a right to life and flow, and as such is honored as a sacred ancestor.” Such Indigenous worldviews are honored in post-humanist positions that “each place has its own character, agential relations, and voice” with active roles and responsibilities (Morse et al. 2018, p. 243). As such, EcoFPAR processes for engaging place as co-researcher require humans to “listen, pay attention to, and learn from” the morethan-human (Martuwarra River of Life et al. 2021, p. 13). Tuck and McKenzie (2015, p. 130) propose a range of Indigenous methods or practices for critical place inquiry, including “Indigenous storywork, mapping placeworlds and place-making, remapping, eating the landscape, urban Indigenous landbased pedagogies and community-based design research, and shellmound work. Each of these prioritizes the significance of place over time” (p. 137). Other relevant methods are deep listening (Redvers et al. 2022), and multispecies ethnography (Kirksey and Helmreich 2010). Drawing from their experience of generating experiential knowledge with rivers, Kurio and Reason (2022), p. 380) also propose that co-operative inquiry can support shared meaning-making as both human and otherthan-human persons are “subjective, self-directing beings.” Some academic publications also include place as author (e.g., Bawaka et al. 2016; Martuwarra River of Life et al. 2021). The co-researcher model in EcoFPAR requires ongoing reflexivity of power and undertaking deliberate actions to dismantle power in all its manifestations. This includes situated and intersecting power dynamics between humans, and between humans and more-than-humans. For example, humans try to dominate nature through the capitalist colonial patriarchy, while more-than-human beings assert their power through interventions such as Coronavirus and extreme weather events. Revill (2021, p. 134) argues, The voicing of nonhuman others might also be found in the resistances, disruptions and unsettlings by which nonhuman others, shape and recast environments whilst surpassing and subverting human intentions.
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Engaging place as a co-researcher also raises questions of representation – whether humans can speak for more-than-humans (Kirksey and Helmreich 2010), and who can speak, particularly in contexts of human displacement and mobility. We don’t attempt to resolve these challenges but highlight them as ongoing ethical considerations in the EcoFPAR process.
5.5
Relationality, Care, Love, and Solidarity
FPAR prioritizes solidarity between co-researchers – women human rights defenders, organizations, and movements – to promote safety and care for activists, with collective risk assessments and strategies (APWLD cited in Godden et al. 2020). In EcoFPAR, the authors extend concepts of collective care and solidarity to relationality between humans and more-than-human, from multispecies ethics of “continual act of attunement to our bodies, the environment, the cultures we exist within, other inhabitants of the Earth and Earth’s complete biosphere” (Foster et al. 2019, p. 5). Bawaka Country et al. (2016, p. 456) explain that humans and morethan-humans “co-become” and are co-constituted through deep relations, through which ethics of care and responsibility emerge. For example, Kimmerer (2013, p. 20) explains how underground fungal networks interconnect trees in a forest, delivering mineral nutrients in exchange for carbohydrates: [fungal networks] weave a web of reciprocity, of giving and taking. In this way, the trees all act as one because the fungi have connected them. Through unity, survival. All flourishing is mutual. Soil, fungus, tree, squirrel, boy—all are the beneficiaries of reciprocity.
Importantly, care involves creating “the political, social, material, and emotional conditions” (The Care Collective et al. 2020, p. 6) for all living beings and the planet to thrive. EcoFPAR for planetary health can also embrace symbiotic and spiritual relationships of love between people and nature as emancipatory solidarity politics (Hanh 1993; Kurio and Reason 2022; Westoby and Dowling 2013). African American feminist bell hooks (2009) proposes a bi-directional love ethic between people and the earth as a radical alternative to patriarchy, racism, and capitalism, and (human) community explorations of the love ethic promote relationships of interconnectedness between humans and more-than-human for universal well-being (Godden 2018, 2021). Through deep listening, EcoFPAR as a process of inquiry and action can encourage reciprocal care and love for, and solidarity with, ecosystems that give humans life.
5.6
Action and Activism
Reflecting Freirean (1970) pedagogy, knowledge informs action, and knowledge is generated through action – and action and activism are central to EcoFPAR for planetary health. EcoFPAR aims for structural change (that is, significant shifts in the way that systems function) to dismantle oppressive power. Ongoing EcoFPAR cycles of action and reflection promote simultaneous change at multiple levels –
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the microbial, individual, household, place/ecosystem, community, society, and paradigm – with an understanding that systems are nested. We identify multiple and diverse forms of activism in EcoFPAR, such as deep community organizing (through multispecies communities), campaigning, protest, lobbying, direct action, media stunts, petitioning, and artivism (Godden et al. 2020; Hayhurst et al. 2018; Kirby 2011; Kemmis et al. 2014), as well as ecosocial practices such as guerilla gardening, environmental rehabilitation, and dadirri (deep listening in the stillness). More-than-human beings also undertake activism; for example, Temmick and colleagues’ (2022) analysis of “biogeomorphic feedbacks” demonstrates how certain types of ecosystems participate in their own landscape changing to facilitate their own growth and sequestering of carbon. Fundamental to activism in EcoFPAR is co-conspiracy – that is, putting one’s privilege on the line through risk-taking and rule-breaking (Love 2019). In the planetary health frame, privilege includes a human’s status due to their gender, race, class, and education (among others) as well as privileges afforded to humans compared with more-than-humans in the dominant socioeconomic-political structure. A key challenge for action and activism through EcoFPAR is that while planetary health recognizes the interconnectedness of everything and promotes holistic responses to identify issues, the dominant neoliberal, patriarchal, and colonialist paradigm imposes artificial boundaries that separate species, issues, policies, and interventions (Redvers et al. 2022). For example, the Aboriginal Health Council of Western Australia (AHCWA) is calling for whole-of-system responses to the interconnected relationships between colonialism, extractivism, land degradation, Indigenous health, and incarceration (AHCWA 2019). The authors reiterate that prefigurative politics may assist communities to engage in subversive activism and resistance to uphold planetary health values in the dominant, compartmentalized policy context, and that EcoFPAR can and must embrace Paradies’ (2020) call for all people to engage in making decolonial futures. The authors suggest that the United Nations Sustainable Development Goals, although a desperately imperfect neocolonial construct, could provide a starting point for systems-informed EcoFPAR activism with governments. Every country is responsible for reporting its progress against the 17 SDGs, which range from poverty eradication and gender equality to climate action and life below water (United Nations 2015). The whole-scale achievement of every SDG target requires cross-sectoral decision-making, policy coherence, and recognition of co-benefits, and requires a paradigm shift from competition to cooperation. With increasing evidence that the health of people is reliant on the health of place (e.g., Weeramanthri et al. 2020), the pursuit of human health outcomes may be the helpful motivation for conservation action, while working toward deeper structural change.
6
Conclusion and Future Directions
This chapter has explored EcoFPAR as a methodology for planetary health: the interconnected vitality and flourishing of nested systems of the organic and inorganic, of humans and more-than-humans. It has identified how human health is
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dependent on environmental health, and the need for emancipatory systems-oriented methodologies to promote planetary health. It has been recognized that while FPAR offers an empowering, community-led methodology for collective human health and well-being, its dominant orientation toward people has limitations from a planetary health perspective. As such, the authors have proposed EcoFPAR as a methodology that builds on the principles, philosophies, and politics of FPAR to promote the interconnected rights, health, and well-being of humans and more-than-humans. EcoFPAR both challenges and extends human-oriented methodologies for public health by nesting humans and our health within the health of ecosystems; acknowledging that humans are Nature. EcoFPAR is anti-colonialist and anti-capitalist, and honors and centers on Indigenous ways of knowing, being, and doing. As a place-based methodology, it removes the anthropocentrism of FPAR by embracing a political agenda of equity, justice, and rights of all elements, including the ecosystems that humans are part of, beyond dualities. In EcoFPAR, humans and place are co-researchers that document their collective lived experiences of oppressive systems of power and injustice to inform action for structural change. This involves participatory and Indigenous methods of inquiry that promote deep listening and relationality between all living things. EcoFPAR embraces relationships of care, love, solidarity, and reciprocity between humans and more-than-humans, for the flourishing and vitality of all systems. The authors propose that EcoFPAR as a methodology for planetary health is necessary for the currently dominant neoliberal capitalist paradigm that promotes economic growth through the narrow measure of Gross Domestic Product, which undervalues care work and disregards planetary boundaries. This dominant worldview is framed around private ownership of nonhuman species and property/place. Such objectification of nonhuman “things” promotes extractive and exploitative corporate practices that are extremely harmful to people’s collective health and well-being. Federici (2020) argues that the process of globalization is a contemporary form of “primitive accumulation,” which proletarianizes producers and peasants by separating them from their places for the elite class to own (and exploit) natural resources as private property. As such, fundamental shifts are required in our socio-economicpolitical systems to promote and protect planetary health. The authors propose that EcoFPAR can provide a methodology for communities and places to challenge and resist colonialism and capitalism in the pursuit of universal health and well-being. This chapter is concluded with a call to action for public health scholars, practitioners, policy-makers, and activists to explore, with curiosity and courage, the emancipatory potential of planetary health and accompanying methodologies such as EcoFPAR. When designing public health research and action, the authors encourage individuals and institutions to collaborate with and deeply listen to Indigenous knowledge holders, ecologists, communities, and places, and actively integrate relationality, care and love for, and solidarity with, the more-than-human with an intergenerational, multispecies, and nested ecologies lens. Radical methodologies are necessary as we collectively grapple with the multifaceted and interconnected complexities of human and ecological health in a global context of uncertainty.
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Cross-References
▶ Environment Injustice and Public Health ▶ Feminist Methodology ▶ Resilient Cities, Healthy Communities, and Sustainable Future: How Do NatureBased Solutions Contribute?
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Human Rights Methodologies in Minority Research Alex Workman, Patricia M. Griffin, and Pranee Liamputtong
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Human Rights: Some Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Humanization, Dehumanization, and Critical Consciousness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Humanization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Dehumanization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Critical Consciousness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Need for Human Rights in Research Methodologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Universality as Participatory Action Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Indivisibility as Content Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Participation as Narrative Enquiry Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Accountability as Victimization Surveys . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5 Transparency as Census Quantitative Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6 Non-discrimination as Unobtrusive Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 How to Position Human Rights Research in Global Public Health Outcomes . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Human rights research has often focused on the voices and lived experiences of minority populations; however, little has been done to connect human rights research with a framework that connects to diverse methodologies. This chapter A. Workman (*) School of Health Science, Western Sydney University, Sydney, NSW, Australia e-mail: [email protected] P. M. Griffin Holy Family University, Philadelphia, PA, USA e-mail: pgriffi[email protected] P. Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] © Crown 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_49
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utilizing the National Economic Social Research Initiatives 6 principles aligns diverse methodologies with each principle. Foundationally, this chapter determines that before commencing research into minority populations, both researchers and the researched must have a deeper comprehension of their rights so both can share in meaning-making a term known as critical consciousness. Through critical consciousness, an individual learns that humanization and dehumanization are conducive to an inequitable world. This chapter concludes with how human rights methodologies strengthen global public health research for minority peoples. Keywords
Human Rights · Humanization · Dehumanization · Critical Consciousness · Minority · Methodologies
1
Introduction
A society should be judged on how well it treats its citizens. For example, access to universal health care, welfare benefits for the unemployed, and equal treatment in the eyes of the law should strive to treat all citizens to live full and meaningful lives. At the same time, many nation-states have outcomes that are less favorable for specific communities, such as Indigenous people (Cuneen and Tauri 2017), people with disabilities (Naylor 2021), gender and sexually diverse peoples (Human Rights Watch 2017) and children (Goldson 2019). These adverse outcomes for disadvantaged communities stem from a lack of attention to human rights and their importance for disempowered individuals and their capacity to experience and participate positively in many aspects of society. While traditionally these groups have been viewed in a singular sense (i.e., on one part of their identity), when considering other parts of their identity in the same social justice issue, they may encounter multiple forms of discrimination based on the intersections of their identity (Workman 2019). There is a propensity to deny people access to many different institutions such as health, education, and criminal justice (Fletcher et al. 2015). The marginalized community is more likely to experience disproportionate outcomes; however, the more marginalized or subordinate their identity(or identities) may be, the more likely they will encounter issues with achieving equity. Intersectionality is based on the multiple intersecting parts of a person’s identity, which are not limited to their cis-gendered or gender non-conforming, sexuality, disability status, religious identity, racial and ethnic identity, Indigenous identity, age and any other identity that arise as the status quo continues to be challenged by people and scholars globally. Intersectionality is not the focus of this chapter. However, when reading this chapter, consideration of the diverse identities mentioned and how they may fit within the context of human rights methodologies, humanization, dehumanization, and critical consciousness must be considered when
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considering research outcomes. Minority human rights are less likely to be considered in social justice outcomes. Given that human rights are for all human beings, their experiences are equally important to giving context and insight into how society can improve their outcomes and quality of life. Therefore, consider, as this chapter is reviewed, what these concepts look like for other identities, each section has brief examples to demonstrate what inequalities some groups faced. Human rights methodologies must emerge and their place in global public health outcomes is important, as global public health outcomes are often more significant for people who are marginalized and not a part of the status quo. This chapter will outline key methodologies that may be best suited to uphold one or more key NESRI term. Through reflection of the process’s humanization, dehumanization, and critical consciousness have for minority participation will be the central focus of this chapter and, accompanied by suggestions for methodological approaches to ensure the NESRI principles are upheld.
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Human Rights: Some Background
Founded after the fall of the League of Nations, the United Nations (UN) is the leader in global human rights (Workman et al. 2021). At the United Nations Foundation, the Universal Declaration of Human Rights (UDHR 1948) was created, highlighting the minimum set of standards that all human beings are entitled to irrespective of race, creed, class, religion, beliefs, or other factors of a person’s identity. Adopted by nation-states globally, the UDHR is the benchmark for governing nation-states irrespective of their sovereignty to ensure all people receive equality. Human Rights, accordingly, are a set of rights we all have by virtue of existing as human beings; they are not granted by any state (UNOCHA 2020). These universal rights are inherent, irrespective of a person’s intersectional identity. They range from the right to life to those rights that ensure life is worth living, such as food, education, work, health, and liberty (UDHR 1948). The UDHR, The International Covenant for Civil and Political Rights, and The International Covenant for Economic, Social, and Cultural Rights make up the International Bill of Rights (UNOCHA 2020). Worldwide, there are many challenges associated with implementing and upholding human rights. In Australia, there is no national bill of rights, and Australian citizens only have five rights guaranteed which are voting rights, freedom of speech, freedom of association, freedom of religion, and freedom from discrimination (AHRC 2020). While other rights exist, they are interwoven throughout state and federal legislation; however, these are discretionary based on the state’s or territory’s political party and agenda while in power (Workman et al. 2021). Due to human rights being guidelines for how people are treated, the UN is powerless to enforce how human rights are upheld for all people. Each nation-state is entitled to sovereignty, and the UN as an organization does not impose its will or force regime changes on states that may not uphold these rights (Hara 2019; The Australian
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Human Rights Commission 2022). Therefore, it is essential to note that there are significant challenges associated with upholding the minimum set of standards for all human beings and the rights they are entitled to. Since the UN’s inception, there have been significant misinterpretations of the UDHR, which has made it necessary for the creation of certain conventions in an attempt to address the gaps of inequality relative to children, people with disabilities, women, and refugees, to name a few (AHRC 2020). Butler (2009) notes that this is quite paradoxical as the UDHR is for all human beings. However, conventions have been created to protect human beings and receive protection without denying their personhood. There are many examples of groups of people who lack their human rights being upheld. For example, Indigenous peoples globally still encounter disproportionate outcomes across all facets of society, including overrepresentation in criminal justice systems, as seen from incarceration rates (Workman et al. 2021), education (Bishop 2021), and poorer health outcomes (Lokuge et al. 2017). Other examples include the treatment of refugees; internally displaced persons; lesbian, gay, bisexual, transgender, queer, or questioning (LGBTIQ); women; children; individuals living with disabilities; and even those of lower socio-economic status. The above-mentioned groups all intersect with one another and, while they encounter health and educational issues – due to these social issues, they tread firmly into human rights issues based on their geographical location. These disproportionate outcomes contradict the UDHR, where all human beings are born free and equal in dignity and rights. Human rights methodological frameworks severely lack research on minority experiences. For example, Workman (2019) and Workman et al. (2021) used a human rights framework founded by National Economic and Social Research Initiative (NESRI) (2017) to guide their research. Workman (2019) found that for individuals who are not heterosexual white women, victims with any other identity do not exist in current public discourse representations of Domestic and Family Violence and, therefore, did not uphold human rights obligations from the Australian Government and Australian society more broadly. Further, a separate study based on Justice Reinvestment Maranguka found that while this organization did not have a human rights framework underpinning their project, they strongly upheld NESRI’s 6 foundational principles (Workman et al. 2021). As outlined in Table 1, these principles are critical areas where all social justice issues, public discourses, government policies, media documentation, and other research projects can be investigated to determine whether human rights were central to their task.
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Humanization, Dehumanization, and Critical Consciousness
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Humanization
Humanization occurs when individuals acquire the freedom to live their lives accordingly and are more freely able to affirm their own unique identities (Friere 1973). Contrastingly, with humanization comes dehumanization, which is the
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Table 1 NESRI human rights framework (Workman et al. 2021) Key Term Universality
Indivisibility
Participation
Accountability
Transparency
Nondiscrimination
Definition Human rights must be afforded to everyone, without exception. The entire premise of the framework is that people are entitled to these rights simply by virtue of being human Human rights are indivisible and interdependent, which means that in order to guarantee civil and political rights, a government must also ensure economic, social, and cultural rights (and vice versa). The indivisibility principle recognizes that if a government violates rights such as health, it necessarily affects people’s ability to exercise other rights, such as the right to life People have a right to participate in how decisions are made regarding the protection of their rights. This includes, but is not limited to, having input on government decisions about rights. To ensure human rights, governments must engage and support the participation of civil society on these issues Governments must create mechanisms of accountability for the enforcement of rights. It is not enough that rights are recognized in domestic law or in policy rhetoric. There must actually be effective measures put in place, so that the government can be held accountable if those rights standards are not met Transparency means that governments must be open about all information and decision-making processes related to rights. People must be able to know and understand how major decisions affecting rights are made, and how public institutions, such as hospitals and schools, which are needed to protect rights, are managed, and run Human rights must be guaranteed without discrimination of any kind. This includes not only purposeful discrimination, but also protection from policies and practices which may have a discriminatory effect
systematic destruction of an individual’s right to agency, self-determination, and access to human rights. Individuals may encounter dehumanization for various parts of their identity such as their race/ethnicity, sexuality, religious beliefs, disability status, gendered identity, age, social class, geographical location, and many more which Crenshaw (1991) identified as intersectionality. The dehumanized individual may encounter this through one part of their identity (ethnicity) and be humanized through another part of their identity (sexuality). DiAngelo (2019) coins this as salient identity and is at the individual’s discretion where they identify which aspects of their identity is more likely to be influenced by dehumanization.
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Dehumanization
Dehumanization commonly occurs when individuals do not encounter the same social justice response as others. For example, Workman (2019) identifies many victims of domestic violence do not experience the same treatment and response to their victimized status as others. Therefore, all individuals who fall outside this binary, experience dehumanization as society fails to recognize, uphold, advocate, record data, or treat victims of domestic violence the same. Workman et al. (2021) replicated this study identifying that Australia has a hierarchy of dangerousness and seriousness for victims and offenders, placing white heterosexual men as the most dangerous offenders and
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white heterosexual women as the most serious victim, and all others as less serious or dangerous. Galtung (2012) defines structural violence as a process that systematically denies people access to health, criminal justice, education, and other formal institutions that are state-run. These barriers create disproportionate outcomes and continue to deny people access to their human rights to live a life free of discrimination against their personhood. The experiences of structural violence continue to be present in many arenas of life and directly influence life expectancy and quality of life outcomes for all people. Liberation from structural violence is achievable. However, some individuals only experience fleeting freedom after periods of struggle and liberation from an oppressive regime, which challenges the legitimacy of their liberation (Freire 2017). For example, the black civil rights movement allowed empowerment and humanization for black men but disregarded black women (Hooks 1992). Gay pride movements (in some nation-states) allow members of the LGBTIQ+ community to express themselves freely (Worthen 2020). In many instances, these two groups still encounter numerous dehumanizing experiences as well. Black men and women die at alarmingly high rates. In the United States, 1 in 1000 black men may not survive their encounter with the police (Edwards et al. 2019). In eight countries, it is legal to punish an LGBTIQ-identifying person with death (Human Rights Watch 2017); these eight countries are member states of the United Nations including Brunei, Iran, Maurtania, Qatar, Saudi Arabia, Yemen, and parts of Nigeria and South Sudan. In an oppressive society, the oppressor uses dehumanization to maintain their power over others and prevent them from being fully human by restricting their ability to exercise their human rights. It is important to note that oppressed people who experience liberation are at risk of becoming the oppressor. Further, some oppressed peoples live in societies where for the most part, the nation-state may not be considered an oppressive society, just oppressive for select groups in specific contexts, and some oppressed groups use their oppression to oppress others. Their liberation is based on the oppressor’s ideology, becoming a vicious cycle of violence (Friere 1973). These invite questions into the legitimacy of whether people genuinely encounter humanization, and whether methodologies currently address the needs of those who may not be aware of their rights.
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Critical Consciousness
Freire (1973) defines critical consciousness as an ability to intervene in realities to change them, and a particular focus must be on iconic representations that have a powerful impact on individuals’ daily lives. Therefore, an individual’s consciousness helps end the cultures of silence in which the socially dispossessed internalize the negative images of themselves, created, manufactured, and propagated by the oppressors in extreme situations such as poverty and colonization, to name a few. The liberation of learners from mimicry is powerful in addressing fratricidal violence that results from the fundamental goal of critical consciousness. Centralizing critical
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consciousness in research outcomes encourages participants to question the nature of their own historical and social situations. Critical consciousness, according to Freire, should be acting as a subject in the creation of a democratic society. For example, Freire implies intergenerational equity between students and teachers in a classroom environment where both learn, question, reflect, and participate in meaning-making. These relationships are reciprocal and challenge students to think critically and reflect on their actions. Using this idea and describing current instructional methods as homogenization and lockstep standardization, alternative approaches are proposed. In this chapter, the authors propose some research methodologies that will enhance critical consciousness and minority participation by upholding their human rights, agency, and right to self-determination through liberation.
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The Need for Human Rights in Research Methodologies
Human rights are the rights of people, whether they are conscious of these rights or not. There are two challenging aspects to human rights methodologies. There is the consciousness of rights where individuals may be aware of their rights. However, there is the comprehension of rights, where people may not fully understand what their rights entail (Friere 1973). It is imperative that this understanding would severely influence the researcher’s effectiveness and thoroughness in knowing what to look for when building research centered around human rights. Importantly, the context in which participants comprehend and are cognizant of their rights is also vital to ensure their full participation in research (Liamputtong 2020). From a methodological perspective, it becomes easier for the researcher to research people who are aware of their rights to research them. Human rights methodologies will allow greater participation in society. Freire (1973) argues that those who have been denied their primordial right to speak their word and truths must first reclaim their right and prevent the continuation of their dehumanization. Conversely, if people are not aware of their rights, this is more challenging. This chapter poses a simple question: • How can human rights methodologies promote critical consciousness to encourage minority participation? Through the NESRI (2017) framework, the following section will address diverse methodologies to encourage minority participation. Table 1 identifies the key concepts of NESRI (2017) with brief definitions of each concept.
4.1
Universality as Participatory Action Research
Participatory Action Research (PAR) is a research methodology that centralizes the experiences of marginalized groups. However, it is not limited to one binary
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category such as race or gender-related issues. PAR works effectively through ongoing collaboration with local people to improve the overall quality of life (Liamputtong 2020). The process includes participation, education, and collective action through the involvement of local people in transforming their lives through ongoing participation and not the product of results. For example, this may include marginalized people participating in research that seeks to understand their lived experiences to provide them with the means of empowering themselves and their circumstances by unpacking what they need, what they may lack, and what contributes to their ongoing marginalization (Freire 1973). In turn, this empowers group members to take control of their lives more effectively by breaking unjust power relations and working toward a more equitable society. Mutual collaboration and shared partnership see PAR involve ordinary people and the “oppressed” join hands to take collective action for social change. Through this PAR process, people who have been oppressed and dehumanized are central to an outcome where they gain confidence and pride in contributing toward better community life. PAR ensures respect and empathy in researchers and professional groups working with marginalized people to face their problems and work toward resolving these problems through providing solutions for how these changes can make (and should be made) (Liamputtong 2020). Arguably, PAR may be seen as a guiding paradigm that influences and democratizes the creation and reproduction of knowledge “truths” by grounding it in the needs of oppressed peoples. Through PAR, knowledge production changes hands from the elite/oppressor to transform and liberate the lives of the oppressed. As noted earlier by Freire (1973), oppressed peoples are not aware of their rights and therefore lack the critical consciousness of what their participation in research may mean. PAR allows for the ineffectiveness of elitism through conventional schooling and science to consider the voices, knowledge, and experiences of all individuals to ensure transformation across all facets of daily life. PAR prioritizes a qualitative approach (but some researchers have now adopt this as a mixed methods methodology (see Palinkas et al. 2010, Palinkas et al. 2015, and Griffin 2017) as it is universal, due to its ability to address both dimensions (depth (QUALual) and breadth (quan)) of the human experience (Griffin 2017). Building upon Palinkis et al. (2010, 2015), Griffin (2017, p. 47) discusses the mixed method approach of PAR with QUAL/quan emphasis on how this approach can shine light onto hidden dimensions of marginalized and often stigmatized social issues. Each method functions to address a series of related questions as quan findings contribute to building the QUAL findings to be more inclusive and holistic on the nuances (QUAL) of the problem, and the breadth of the problem (quan). While many people are not aware of the universality of human rights, PAR challenges the status quo by ensuring voices, experiences, and recommendations of marginalized peoples are considered in decision-making processes that directly influence their life course, outcomes, knowledge understanding, and reflect on their truths.
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Indivisibility as Content Analysis
Content Analysis is a research methodology that may be adopted either quantitatively or qualitatively and adopt deductive or inductive approaches (Elo and Kyngäs 2008). This approach seeks to analyze written, verbal, or visual communication messages to garner social meaning (Vaismoradi and Snelgrove 2019). Content Analysis allows the researcher to engage in an inquiry into how much interest surrounds particular social phenomena. For example, the researcher may determine that the health outcomes of minority populations are in decline, but there may not be substantive data to support this hypothesis. The content analysis concerns itself with the examination of printed texts and documents and particularly mass media items (Bryman 2016), such as the number of times a particular social issue is being discussed on the news, Facebook, or Twitter. The indivisible nature of this research methodology seeks out how issues faced by minority individuals may be discussed within mainstream media. This may be challenging to achieve. For example, the content’s validity may be questionable – especially in a post-Trump world (REF), media reporting on stories may not be transparent. Further, with COVID-19 the volume of misinformation and surrounding vaccines and governmental mismanagement (Islam et al. 2021), people’s trust in the media as a truth-to-power organization is waning (Islam et al. 2021). Despite these limitations, the importance of content analysis outweighs current challenges. If done correctly, the content analysis highlights the voices and concerns of the people as it utilizes multiple avenues of data collection to ascertain the truth.
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Participation as Narrative Enquiry Methodology
Narrative is one of the oldest forms of communication and sense making. Narratives represent the personal and social dimensions of individuals’ lived experiences as told through stories (Bleakley 2005). Narrative inquiry is a form of qualitative research grounded in storytelling and retelling to understand social patterns (Butina 2015; Liamputtong 2020). The stories themselves become the raw data for research in many social science disciplines, health, and education research (Clandinin 2007). As a tool for human rights research, narrative inquiry is well suited to focus on the relationships between people, events, ideas, and the resultant emotional effect that is integral to human rights (Freeman et al. 1997; Dawes 2007; Osler and Zhu 2011). While narrative inquiry draws on the accounts of individuals’ lived experiences to represent people’s knowledge and understanding, as noted by Clandinin and Rosiek (2007), the focus of the narrative inquiry is more broad. Its foundation stems heavily from the respect for ordinary people and their lived experiences. It ensures that one’s experiences are valorized and ensures their social, cultural, and institutional experiences are reflected through how meaning-making is produced, shaped, and enacted based on ongoing participation and engagement with civil society (Clandini and Rosiek 2007). While narrative inquiry shifts from personal stories to larger historical
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narratives situated heavily within social-ecological institutional contexts, it respects how participation is shaped through these narratives. Gandsman (2013) postulates that narrative inquiry and human rights are interdependent, producing, constructing, and transmitting narratives as a dominant activity of human rights work. The narrative account provides a window into how human rights abuses manifest, how they are experienced, and what situations are most conducive to dehumanization. Personal narratives become the primary mechanism for human rights appeals and ensuring human rights are upheld for all. Through the narrative process, people not only participate but also resonate with the stories of their fellow human beings. Humans are story-driven creatures and respond more meaningfully when they hear a story versus reviewing another statistic. This process of connection ensures that others are compelled to support their cause. Dawes (2007) extends this further by reiterating that human rights work is practical through disseminating information and can change the world as storytelling through participation uphold the fundamental principles of human rights.
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Accountability as Victimization Surveys
Victimization surveys collect comparative data between policing statistical data and the general public’s perception, experiences, and understanding of what crimes are occurring in their local areas. This approach to crime helps hold governments accountable in areas the public has concerns about criminality. For example, policing statistical data records crimes that are officially reported to the police. However, as Kesteren et al. (2013) identify, there is bias in police understandings and priorities of what crimes are either being taken seriously, biased in terms of severity or “report worthy,” and whether the policing organization has the resources necessary to combat the type of crime that may be evolving. Victimization surveys invite an alternative comparison to see what public people believe is an issue that the police and, by extension, the government may not be aware of. It is worth mentioning that for some people, the fear of crime and what has been considered a crime is vastly different, and people’s fear of crime may be far greater than the reality of crime. In some instances, people may fear that crime can happen to them in the probability of actually being a victim of crime (Franklin et al. 2020). Kesteren et al. (2013) also note that some victimization surveys have their own “in-built” biases, such as not collecting data on emerging types of crimes or considering other demographical data pertinent to addressing discrepancies between their identity and crime rates. If the intersectional identities of people are not considered, this may skew governments’ accountability and may not consider resource development for a particular identity. Some commonly neglected identities are those who have a disability and those who are gender and sexually diverse (Workman et al. 2021; Workman et al. 2022). Governments have a responsibility to protect and uphold the human rights of all people and, for them to achieve this, crime victimization surveys must be inclusive of all pertinent demographical information to truly ensure the health and human rights of people are protected.
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Transparency as Census Quantitative Data
Governments globally have a duty to be transparent, and citizens have the same right to express their concerns, grievances, and criticisms if governments fail in their obligations to protect the rights of the people (Martin 2019). Census data is collected in nation-states to determine a myriad of social determinants, with essential data reflecting population counts, ethnicities, ages, gender, income, housing levels, and other social determinants of health (Kenny et al. 2021). Analyzing census data has been utilized in research for over 100 years in social science research including some of the earliest studies of social biometrics by Quetelet in 1835 (Faerstein and Winkelstein 2012) and suicide by Durkheim in 1897 (2013). Within Australia, the Australian Bureau of Statistics (ABS) collects census data every 4 years, and these findings are used to determine areas for improvement (Tam and Clarke 2015). In Australia, the first population counts were in 1788 and 1911 was conducted by the Australian Bureau of statistics. Interestingly, the ABS lacks inclusivity when collecting data on historically did not include Aboriginal and Torres Strait Islanders until they were recognized as people in 1968 and not flora and fauna. Currently, diverse gendered and sexual identities are not included in census data collection. The ABS’s rationale provided to justify why the organization does not capture identities if the fear of public backlash for including these groups. What is unfortunate about this is that Australia has little comprehensive data to develop policies, mental health funding, suicide prevention, domestic and family violence support, and other interventions for this community (Tam and Clarke 2015). There is a severe lack of inclusive and comprehensive data on the scope of the issue. Governments and their representative organizations have a duty of care to ensure that all people’s needs are being met. Purposefully excluding groups from being included misses significant opportunities to examine issues of social injustices and perpetuate structural violence closely. Census data can be an excellent tool to measure transparency if utilized correctly. As it stands, census data from the ABS is not inclusive and undermines the legitimacy of the transparency definition. For this definition to be upheld, all people’s experiences, identities, and subsequent exposures to specific issues of injustice must be identified. Currently, the Australian example demonstrates that groups are purposefully excluded from national conversations due to irrational fears that stem from being a hyper-conservative and homophobic nation (Stephensen and Hayes 2021; Knott 2022). To deny this is to contribute to the process of dehumanization. At the time of writing this, Australia has denied the inclusion of LGBTIQidentifying individuals from their national census data collection.
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Non-discrimination as Unobtrusive Methodology
Unobtrusive data collection methods draw on social and cultural meanings from pre-existing sources (e.g., gray literature) without intruding on the everyday lives of individuals (Liamputtong 2020). Many forms of data can be utilized that do not intrude on marginalized people and capture their perspectives. For example,
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pre-existing datasets such as statistical data or printed data such as media or newspaper articles and official policy documentation can be collected to determine the types of discrimination some groups may encounter (Workman et al. 2021). Analyzing data utilizing an unobtrusive methodology has the benefit of being non-discriminatory. However, the drawback of this type of data collection is that there may not be any data on the particular social phenomena that is the point of inquiry. There are many ways that data collection can be unobtrusive, including material cultures such as physical objects (e.g., cutlery); physical traces (e.g., condoms in rubbish bins and graffiti); and settings such as bathrooms (e.g., gender-neutral toilets) (Liamputtong 2020). Liamputtong (2020) notes that this method is heavily used in crime scene investigations. Written records are another way to ensure your methodology does not intrude on its participants. Accessing resources such as libraries, state archives, and private data collections are ways of obtaining rich data; these can also include police records, government records, and even published material such as books, journals, magazines, newspapers, and life histories of people such as diaries and letters (Liamputtong 2020; Silverman 2011). An interesting way to investigate the perspective of a nation-state on particular social injustice issues is to view cartoon records in print media. This approach has the added benefit of allowing people to tell their stories and reflect and empower themselves, which can have a transformative impact on their sense of self (Kuttner et al. 2020). The audiovisual record includes films, television programs, videos, images, music, and photographs. This type of approach investigates how specific social injustice issues are portrayed or how they may be spun in certain lights to allow public opinion to favor the outcome or only see one type of perspective for that problem (Kuttner et al. 2020). For example, how a particular social injustice issue is portrayed in television programs. Simple observations are also an effective unobtrusive method. While the possibilities of unobtrusive methods are endless, they allow observation to determine whether people’s rights are being infringed on or are being discriminated against by institutions such as the media. An example of non-discrimination and its abuse as a human right is the same-sex marriage debate in Australia and the approach taken by religious parties. The Australian Christian Lobby distributed dehumanizing material that the Australian Psychological Associated made a statement that this approach would have significant adverse effects on the LGBTIQ people and their sense of self. Many people thought it was appropriate to provide commentary on individuals’ lives, which ensures their continued discrimination. Australia has since legalized same-sex marriage, but the information available demonstrated that discrimination was undertaken from an unobtrusive approach through all avenues.
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How to Position Human Rights Research in Global Public Health Outcomes
Human rights are the rights of the people, and they go hand in hand with global public health outcomes. All citizens have the right to live and participate in life with all the benefits of living a full life. While there are many global public health
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concerns, they have been addressed throughout this handbook. This chapter has examined the impact of human rights methodologies and their involvement to advance global public health outcomes. It is essential to establish whether people are aware of their rights and their nation-state’s capacity and value concerning human rights. Many nation-states play a role in upholding human rights and their subsequent public health outcomes for some groups exceptionally well. However, the status quo is generally maintained to uphold some people’s rights and their health outcomes over the same outcomes at the expense of others. There are many groups whose rights and health suffer as a result of the status quo being maintained. Indigenous groups globally still encounter many challenges in obtaining autonomy and their right to self-determination and are overrepresented in every facet of society (Workman et al. 2021). Those with disabilities encounter systemic issues but are more likely to be hidden within contemporary discussions surrounding health outcomes (Goering 2015). Individuals who are gender and sexually diverse are missing from many conversations concerning their safety. The violence they encounter, both state-sanctioned and interpersonal, is increasing exponentially (Palmer and Kutateladze 2021). While many groups may be missing from the above examples, many still benefit from having some parts of their identity accepted within society. For example, current conversations about domestic violence are very inclusive of white heterosexual women (Workman 2019). While many victims are indeed women, some are heterosexual men, many are sexually and gender diverse, and despite scholarly endeavors to increase the visibility that other victims exist, this is more likely to meet resistance as it does not align with some organizations’ positions (Our Watch 2022). Furthermore, if human rights are to be upheld in this context, then all people’s experiences must be considered, and utilizing the NESRI framework strives to make accountability at the forefront of all global public health concerns. If nation-states truly wish to uphold the rights of all people in terms of global public health, they must have an honest conversation about those who are marginalized, disempowered, and silenced through discriminatory rhetoric that fails to uphold their rights. In the failure to uphold people’s human rights, the health of minorities is compromised.
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Conclusion and Future Directions
Moving forward with human rights methodologies, greater measures of their effectiveness in other social justice outcomes are essential. While global public health is crucial in addressing how human rights interplay with these outcomes, other areas such as a person’s geographical location, access to representation in the criminal justice system, educational outcomes, and employment opportunities, as well as ensuring people’s participation in these ensure meaningful change and justice for all is central. Human rights are the rights of the people. Yet, many people may not be aware of or comprehend what their rights mean. Governments have a responsibility to ensure that the rights of the people are comprehended and taught. Moving forward with purpose and equity ensures that humanization occurs, and the directly observable reductions of dehumanization are seen over time. Societies need to ensure that a
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liberated oppressed person learns new ideologies for the promotion of equality and does not revert to the ideologies of their oppressors. Moving forward, researching vulnerable people must be grounded in a human rights framework that is not only universal but equitable to all people’s experiences. Ensuring a person’s human rights are central not only to their decision-making but is essential to ensuring future research into minorities have their voices captured and people’s recommendations are taken on board, and meaningful and sustainable changes occur. This change must come from educating people on the fundamentals of human rights, allowing people to gain a deeper and more comprehensive understanding of their rights and their obligation to ensure the rights of others are upheld.
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Upending Quantitative Methodology for Use in Global Public Health Dan J. Spitzner
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Statistics for Marginalized Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Statistics Under a Qualitative Mental Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Diffractive Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter takes the reader through discussions of three quantitative methodologies that upend traditional positivist-type underpinnings of quantitative inquiry, allowing them to inform inquiry without occluding social factors or dismissing lived experiences, two aspects that are particularly valued under a social model of global public health. First, statistics for marginalized groups is a pragmatic, justice-centered methodology that emphasizes the use of statistics to improve lives. The discussion of this methodology focuses on Indigenous statistics and queer data in particular and makes comparisons with social epidemiology. Second, statistics under a qualitative mental model is a way of statistical thinking that does not distinguish between data as numbers and data as words. This mode of inquiry is demonstrated in its capacity to address inferential questions. Third, diffractive methodology is motivated by new materialist philosophies and emphasizes reading varied forms of data through each other. A focus of this discussion is the relevance of quantitative methodology to such diffractive reading.
D. J. Spitzner (*) Department of Statistics, University of Virginia, Charlottesville, VA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_51
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Keywords
Quantitative methodology · Statistics · Social model of health · Health inequity · Marginalized groups · Diffractive analysis
1
Introduction
New movements in critical theory and research practice have put forward alternative guidance for the deployment and interpretation of quantitative methodologies that would open for them a role in inquiry that prioritizes its ethical and political dimensions. Articulated by researchers dedicated to social justice, by researchers who are themselves members of marginalized groups, or by thinkers who reject the hegemony of traditional science, these alternative perspectives upend what quantitative methodologies have traditionally meant for research practice. This chapter lays out three routes by which such upending is taking place and contemplates the implications of each for research in global public health. The three routes are statistics for marginalized groups, statistics under a qualitative mental model, and diffractive methodology, each of which is described further in subsequent sections. These methods navigate a space of tension that has also given rise to the new public health, a movement that is motivated by “increasing awareness that medicine alone cannot adequately improve health overall or decrease health inequalities without examining where and how people live” (Liamputtong 2022, p. 12). Krieger (2001, p. 673), for example, discusses the blindness of biomedical approaches to the eco-social context that would, e.g., recast “alleged ‘racial’ differences in biology. . .as mutable and embodied biological expressions of racism.” The new public health prioritizes understanding of social factors in the health and societylevel interventions, especially as they relate to health inequities, over the medical treatment of individuals. It acknowledges that “health is constructed socially and culturally” (Liamputtong 2022, p. 3). The move from a medical model to a social model of public health has inspired argumentation and action toward corresponding shifts in research methodology, based on a recognition that traditional quantitative methodology alone is insufficient to account for the complex phenomena acknowledged by the new model. Counted among issues that traditional quantitative methodology is limited in its capacity to address are, e.g., multicultural perspectives, imbalances in political power, local and community perspectives, and individual experiences of health. Padgett (2012, p. 9) notes that “standardized measures,” upon which traditional quantitative methodology relies, are “weak approximations when it comes to capturing the suffering of a cancer patient, the thrill of smoking crack cocaine, or the deep trauma of rape.” Inhorn and Whittle (2001, p. 558) assert that a social model of public health requires quantitative researchers to “join forces” with socially oriented researchers, who are strongly guided by theory and who “value qualitative forms of data. . .that give context and meaning” to quantitative analyses. Accordingly, modes of inquiry other than the traditional quantitative are increasingly recognized as crucial to public
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health research under the social model. Faltermaier (1997, p. 357) makes a strong case that public health research “needs” qualitative methods, owing to their concentration “more on the (whole) person in his/her ‘life world.”’ Padgett (2012) reinforces arguments for the use of mixed methods research (MMR) in public health, a class of methodology that values joint, holistic use of qualitative and quantitative methods. Also stressed in the new public health is an ethical and justice-oriented approach to research. Pratt (2021, p. 1) defines global health research as having a focus on low- and middle-income countries while also encompassing research on marginalized or vulnerable groups in high-income countries, all with the aim to reduce health disparities “at the macro-level.” Pratt describes an ethical framework, developed for researchers and funders, that stresses such practices as community involvement in the selection of research questions and setting of priorities, and participation of community members in the research itself. In this way, the new public health interfaces with socially inclusive research, an approach to research that attends to such notions as “unity, cohesion, civic engagement, togetherness, or bridging the gap between ‘us’ and ‘the other”’ (Koikkalainen 2011, p. 2) and embraces such research modes as “participatory, emancipatory, partnership and user-led research” (Nind 2014, p. 1), among others. The ethical dimension of these practices can in some respects put them into conflict with institutional guidance toward an evidence-based framework for public health, which presses a hierarchical perspective on ways of knowing, wherein “induction is inferior to deduction, subjective perceptions are inferior to objective quantification, and description is inferior to inferential testing” (Giacomini 2001, p. A-11; see also Lather 2004; Denzin 2010). The evidence-based perspective places traditional quantitative methodology at the top of the hierarchy. The approaches discussed in this chapter, however, are more appropriately situated among evidenceinformed practices, a more inclusive research-based model discussed in McLaughlin (2012, pp. 105–108). To further situate them, it is worthwhile to consider Denzin’s (2009, p. 142) three positions on evaluative criteria, the first two of which are foundational, which emphasizes that all research would conform to shared criteria, and quasi-foundational, which encourages the development of separate criteria for qualitative research; much of what follows is aligned with the third, non-foundational position, which “conceptualizes inquiry within a moral frame, implementing an ethic rooted in the concepts of care, love, and kindness.” As a vehicle for upending, this chapter is concerned with recontextualizing quantitative inquiry, in order that it may itself be responsive to cultural factors, guided by ethical considerations, and furthermore sensitive to the power dynamics at play in research. Critical theorists have noted an atheoretical and yet privileged posture of quantitative methodology, one that opens it to often fall “into the trap of pathology, deficiency, and depravity narratives of the marginalized” (Dixon-Román 2016a, p. 2). The basis of this shortcoming is that traditional quantitative methodology’s aspiration for decontextualization and neutrality can blind it to the underlying power dynamics of the research context and hide its bias, which is typically in favor of dominant institutions (see Kukutai and Walter 2019, sec. 2.2).
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Feminist and intersectional critics have long recognized such problems of decontextualization and have theorized alternative conceptualizations of knowledge and epistemology that center issues around power dynamics. Consistent with this is the first tenet of Randall’s (2021) framework for antiracist construct definition, which asserts that decontextualization has the effect of sustaining a dominant culture and harming minority groups. Similarly, Guyan (2022, p. 20), writing about data collected on LGBTQ populations, confronts any claim that data could ever be neutral: “Data is not reality. Data is a record of the social world mediated through decisions made about what or whom to include or exclude.” The remaining sections of this chapter take the reader through short expositions of three nontraditional quantitative methodologies, each embracing a distinct approach to recontextualization, covering guiding concepts and connections to practice. The scholarly landscape around these methodologies substantially varies: each builds upon a different set of established methodological foundations and offers a cuttingedge vision of how those foundations may be put into practice. While this chapter is not intended as an exploration of philosophy, it makes use of the arc formed by conceptual foundations as a helpful structure through which to navigate the similarities and differences between methodologies and to identify the precise manner in which each methodology upends a traditional quantitative perspective.
2
Statistics for Marginalized Groups
Statistics for marginalized groups is not a methodology of its own but a constellation of methodologies that have arisen to benefit the lives of people in specific, oftenoverlapping marginalized groups. Two methodologies anchor the discussion of this section: Indigenous statistics and queer data, which are respectively developed for Indigenous and LGBTQ communities and described in the books by Walter and Andersen (2013) and Guyan (2022), and related work. Narrowing our focus primarily to these two methodologies is not to dismiss or downplay other methodologies but to aid discussion by setting up a continuous thread of concepts. This literature is in dialogue with other relevant work, such as D’Ignazio and Klein’s (2020) development of intersectional-feminist perspectives on data science, Benjamin’s (2019) reexamination of data technology through the lens of a “new Jim Code,” and work on research in general on marginalized groups, such as Smith’s (2012) seminal book on decolonizing research and Wilson and Neville’s (2009) insights into culturally safe research. It furthermore overlaps to a degree with discussions in such fields as social epidemiology (cf. Krieger 2012), discussed further below, which promotes the grounding of quantitative health-inequity studies in both biological and social theory. In addition, Mertens (2003) cites the work of feminist and disability scholars in her development of the transformative perspective (a.k.a. transformativeemancipatory perspective) in MMR, whose insights readily apply to upending quantitative methodology. Though the landscape is complex and varied, discernible connections among the methodologies that comprise statistics for marginalized groups can be made through their motivations, guiding perspectives, and other
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attributes. The present discussion highlights a handful of dimensions that hold some points of the constellation together. Example health applications appear in the references discussed below. Walter and Andersen (2013, p. 7) begin their groundbreaking book with the assertion that “statistics are powerful persuaders” and in so doing signal their philosophical approach to quantitative methodology. These authors state clearly they are “not questioning the validity of ordinary least squares regression, factor analysis, chi-square correlation, or the myriad of other statistical tools” (p. 56). Rather, they upend quantitative methodology by recognizing that decisions about the collection of data and use of statistical tools are shaped by cultural factors, including the influence of those who judge which communities are capable of embracing standards of objectivity. Noting that settler cultures rarely extend to Indigenous communities the “presumption of objectivity” (p. 51), Walter and Andersen develop a quantitative methodology that is “by and for” Indigenous communities. Guyan (2022) discusses the queering of quantitative methodology through a perspective that questions and reinterprets the collection, analysis, and use of data about LGBTQ people. Queer data brings to the fore both the hazards and benefits to LGBTQ people of being counted (e.g., in a census) and the gravity of such concepts as Benjamin’s (2016) “informed refusal,” a feature of data-collection designs by which they avoid coercing potential respondents into providing data they would prefer to withhold. Guyan stresses that LGBTQ people have options to participate in existing data-collection systems or to advocate for their reform or abolishment. Echoing Walter and Andersen’s call for Indigenous statistics by and for Indigenous communities, Guyan calls for passing over “the same pool of experts and professionals to fix biases and assumptions that cause harm to LGBTQ people, many of whom were responsible for these design failings in the first place” (p. 178) in favor of engaging new pools of researchers, practitioners, and activists that would hold a common aim to use queer data to improve the lives of LGBTQ people. As indicated, a distinguishing feature of statistics for marginalized groups is that it does not organize around the research goal of dispassionate, apolitical generation of knowledge but instead defines its aims around social justice and the improvement of lives. Its approach is practical while guided by values, in the sense that it prescribes the use of a given methodology when such use would support a project’s emancipatory aims. Mertens (2012, p. 256), for example, writes that the transformative perspective’s assumptions “emanate from an ethical stance that emphasizes the pursuit of social justice and the furtherance of human rights.” Walter and Andersen (2013) propose a worldview for Indigenous statistics that stresses the social position of the researcher. For them, this notion is to be understood through an extension of Bourdieu’s (1984) three-dimensional concept of social space, defined by social, cultural, and economic capital, which is formulated by the addition of racial capital as a fourth dimension. Social position is argued to be a “verb rather than a noun. . ., it covertly, overtly, actively, and continuously shapes how we do, live, and embody research practice” (p. 47). Their epistemology stresses reflexivity (i.e., reflection by the researcher on their own values and social position)
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and an imperative of Indigenous researchers to articulate epistemology given the historical view of Indigenous peoples as the subjects of knowledge only, not the knowers. They embrace a constructivist ontology, asserting that “as human beings we all live in a world about which our frame of reference is socially constructed and hence cognitively constricted” (p. 53). See also Mertens (2003, pp. 140–142) for a similar worldview associated with the transformative paradigm. As indicated by these worldview descriptions, it is common that a methodology aligned with statistics for marginalized groups would engage with critical social theory. For example, Guyan (2022, p. 11) casts queer data as a “clash between queer theory and actual people.” These methodologies recognize underlying theories of governmentality and a central role of statistics as a technology for managing and regulating a population. Both Walter and Andersen (2013) and Guyan (2022) refer to ideas that build upon Michel Foucault’s scholarship in this area (Foucault 1991), specifically as regards the form of specific governmental practices. Walter and Andersen (2013, p. 14) refer to Chatterjee’s (1994) and Scott’s (1995) ideas on the centrality of classifying differences in colonial power hierarchies and its role, as well as the role of statistics, in determining targets of delineation between the dominant and subjugated. Guyan (2022) refers to Scheel’s (2020) insights on how Foucault’s concept of biopolitics (whose concern is the regulation of populations) is grounded by statistical practices in situated contexts and to McDermott’s (2017, p. 54) examination of how LGBTQ statistics “govern and regulate who is accepted and understood as a sexual citizen.” Such biopolitical perspectives underscore a fundamental pragmatism beneath this mode of inquiry, one that can help to resolve paradigmatical incompatibilities. Consider, for example, the seeming contradiction between Walter and Andersen’s unquestioning acceptance of traditional statistical tools (ordinary least squares and so on) and their embrace of constructivism. Though validation of statistical methods is traditionally founded upon positivist, hence non-constructivist, criteria, these authors refer instead to the “social and political acceptance of the validity of statistical analysis” (p. 134) and are vocal about the stakes involved for Indigenous communities: “we underestimate the power of the data in our colonizing settler first world nations at our peril” (p. 134). Indeed, a key motivation for much of the statistics for marginalized groups is dissatisfaction with the prevalence of research outcomes that are unrepresentative of the experiences of given communities (cf. Mertens 2018, p. 21), or that reflect a “cocooning” of their experiences to the private sphere (Guyan 2022, p. 70). Kukutai and Walter (2019, sec. 2.1) further clarify the contours of pragmatism in this mode of inquiry by carefully distinguishing between methodology and method: methodology is “the framework that guides how the researcher approaches the research,” while the method has the “straightforward meaning” of how data are collected and analyzed. The related discipline of social epistemology shares many of the perspectives and concerns of statistics for marginalized groups. It is a theory-aware approach to epidemiology that is particularly unsatisfied with perspectives that would embrace biological essentialism as the primary explanation for disease. It pushes against the decontextualization of traditional quantitative inquiry by creating “a marriage of
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sociological frameworks to epidemiological inquiry” (Krieger 2001, p. 669). Theoretical frameworks that prominently engage with social epistemology include ecosocial theory, whose central focus is “how we literally biologically embody exposures arising from our societal and ecological context” (Krieger 2012, p. 936), and intersectionality theory, which recognizes “multiple intersecting social identities” and is concerned with how these reflect “multiple and interlocking structural-level inequalities” (Bowleg 2012, p. 1267). Through such engagement, it is apparent that social epistemology acknowledges the role of political forces in shaping health inequalities and can support the pursuit of social justice by way of generating “evidence for accountability” (Krieger 2020, p. 47). Intersectionality researchers have furthermore expressed skepticism of traditional quantitative perspectives by noting that epidemiology statistics may be understood “in ways that are neither simply positivist nor atheoretical” (Bauer 2014, p. 12). Some have gone further by asserting that multidisciplinarity in intersectionality research is partly valuable for challenging the “predominant post-positivist paradigm in which most traditionally trained researchers are steeped” (Bowleg 2008, p. 323). It can, thus, be argued that social epistemology, especially where it converges with intersectionality research, is an example of an upended quantitative methodology. On the other hand, motivations expressed from an ecosocial perspective derive from an aspiration for “ensuring scientific rigor” wherein “scientific knowledge is dynamic and reflexive” (Krieger 2021, p. 27); accompanying literature readily employs scientific language and concepts to motivate and guide discussion, suggesting a rather traditional science-based interpretation of quantitative methodology. In certain respects, social epidemiology reflects a similar pragmatism as statistics for marginalized groups, especially in regard to the selection of variables, which is a crucial practical concern of both. Nevertheless, social epidemiology is more accepting of abstract scientific concepts such as mathematical modeling and statistical testing. This is not to say that such acceptance is wholesale, nor that these concepts are absent in other methodologies. Bauer (2014, sec. 4.1) asserts that it is not clear which, if any, of a variety of statistical methods that have been proposed for quantitative intersectionality research are well suited to that purpose. She notes (in sec. 4.5), for example, ambiguities in the use of regression due to varying interpretations of interaction that depend on whether the underlying mathematical model is formulated on an additive or multiplicative scale. The line between statistics for marginalized groups and social epistemology, as they are described here, is not sharp. If they are to be distinguished, the sharpest axis would be in terms of who implements the methodology and who it is for. It is notable that social epistemology counts accountability and agency among its core constructs (Krieger 2012, p. 937). However, practitioners of statistics for marginalized groups are either members of or close collaborators with marginalized communities in research and advocacy. On this point, Guyan (2022, p. 155) reminds the reader of the rallying cry “nothing about us without us,” originating in disability rights activism and since embraced by a range of advocacy groups (see Charlton 2000), which emphasizes the importance of engaging with stakeholders in decision-making discussions that
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would impact marginalized groups. The participation of marginalized communities is crucial to embed in a research project the standpoints of the community to which its outcomes are to benefit; the entire project is to be designed to privilege those standpoints and dismiss perspectives that would frame the priorities and values of hegemonic institutions as normative (Walter and Andersen 2013, p. 86; see also Smith 2012; Barnes 2000). D’Ignazio and Klein (2020, pp. 137) offer further clarity to this point in their comparison of “data for good” with “co-liberation.” The former term refers to data projects that are promoted as service or charity to marginalized groups, whose goals are often imprecisely defined (see Hooker 2018) by organizers who may be less than fully invested in addressing the root causes of oppression. The latter term refers to the phenomenon by which dismantling an oppressive system would liberate members of marginalized and dominant groups from harm, who would be motivated to work together for social justice. Guyan (2022, pp. 153–154) discusses the impact of privilege hazards in policymaking discussions, where decision-makers lack knowledge or experience to understand the vantage point of marginalized groups and how policies may harm them (see also D’Ignazio and Klein 2020, p. 28). Although Guyan (2022, p. 156) acknowledges that “it is not practical to bring experiences of every identity characteristic into every room where decisions are made about data,” he offers two interrelated requirements for queer data competence: “a basic knowledge of language and concepts associated with LGBTQ identities” and “a willingness to assume a contrarian role in data discussions” (p. 156). Indigenous researchers have furthermore contributed important ideas to the concept of data sovereignty, a “unique twenty-first-century expression,” which refers to “managing information in a way that is consistent with the laws, practices and customs of the nation-state in which it is located” (Snipp 2016, p. 39). Data sovereignty addresses important questions about the origins and content of data, how it is to be used, and who controls access to it.
3
Statistics Under a Qualitative Mental Model
Though statistics for marginalized groups is motivated by concepts of governmentality and is informed by social constructivist perspectives, its pragmatic character results in decontextualization of statistical thinking itself. At a practical level, such decontextualization untethers the analyst from guidance that would be used to formulate conceptual strategies for organizing analyses and reporting the insights gained from the examination of quantitative data. Considerations of this sort fall rather comfortably within the framing of mixed methods research (MMR) discussions, specifically those concerned with the compatibility of quantitative and qualitative methods when they are each to inform the same research study. At the heart of the issue is the seeming incompatibility between positivist-type and constructivist thinking that respectively underlie quantitative and qualitative methods (see Teddlie and Tashakkori 2003; Denzin 2010; Creswell 2014; Hathcoat and Meixner 2017; Meixner and Spitzner 2021), and the challenges of
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integrating methodology based on them (see Bryman 2007; Hall and Howard 2008; Hesse-Biber 2010; Nastasi et al. 2010; Denzin 2012; Creamer 2017; Watson 2020). Teddlie and Tashakkori (2003, p. 20) make reference to “single-paradigm” approaches to integration and list two: the transformative perspective, discussed in the previous section, and a broad form of pragmatism (see Cherryholmes 1999). Statistics under a qualitative mental model is a distinct single-paradigm approach to holistic organization of the more fine-grained aspects of analyses, regardless of the type of data on which analysis is based; it is particularly well suited to dealing with inferential questions. The particular phrase mental model is a widely used term in qualitative and mixed methods literature that refers to a researcher’s “set of assumptions, understandings, predispositions, and values and beliefs” (Greene 2007, p. 53) that would guide them in carrying out a research project (see also Smith 1997; Hathcoat and Meixner 2017). A qualitative mental model tends to align with constructivist perspectives, which recognize multiple social realities and that researchers and participants engage together to create knowledge (Mertens 2003, pp. 139–141). At its core, statistics under a qualitative mental model is an approach that mutes or eliminates distinctions between the techniques that would be used to work with qualitative and quantitative data. Without naming it as such, Smith (1997, p. 77) articulates this view while pinpointing its manner of upending quantitative inquiry: From data in the form of numbers, one makes inferences in the same way as with data in the form of words, not by virtue of probabilistic algorithms. Statistics are not privileged. Inference is not mechanized.
Reflected in this comment is particular concern about the use of automatized methodology that would distract the researcher from paying close attention to the context of inference. The approach discussed in this chapter focuses on the reporting of evidence. It is founded upon a branch of traditional statistics called Bayesian analysis, a heavily probabilistic framework that stretches the greatest extent among traditional statistical frameworks in the direction of qualitative methodologies. Two aspects are particularly notable. First, Bayesian epistemological reasoning acknowledges the subjectivity of inference and emphasizes a type of knowledge it terms prior knowledge, which refers to knowledge that is available before a study has begun. Second, Bayesian analysis is organized around a transformational process, in the sense that its central concept is the updating of prior knowledge to posterior knowledge by examination of data, the latter referring to knowledge that is available after a study is complete. This etches into Bayesian reasoning a story-like structure and in that way pushes it toward the use of narrative techniques in inquiry. Despite these glimmers of compatibility with qualitative methodology, traditional Bayesian analysis is firmly couched in positivist-type thinking. Prior knowledge is precisely formulated via rationalistic arguments that characterize it as a reflection of the preferences of an individual, rational expert (Howson and Urbach 1989). Development of this idea has intersected with psychology literature on judgement under
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uncertainty (O’Hagan et al. 2006). Practicing Bayesian statisticians furthermore tend to make vital use of sophisticated mathematical models whose justifications are based on idealized mechanical processes (Gelman et al. 2013). These aspects make it hard to reconcile traditional Bayesian thinking with research approaches that value context and conceptual flexibility. Rather than reconcile, Spitzner (2021) outlines several key steps through which Bayesian foundations may become compatible with a qualitative mental model. One of these is a reconceptualization of prior knowledge as community knowledge, a concept derived from the psychology of argumentation (Mercier and Sperber 2011), rather than that of uncertain judgement. A researcher’s goal under this formulation is not to extract minimally biased knowledge from the mind of an expert but to produce an argument to their community that is to contribute to discourse. This argumentative view connects prior knowledge to the researcher’s social position; it emphasizes that inquiry is an iterative, social process. Bayesian analysis is widely used in traditional epidemiology and other quantitative studies of health phenomena (see Lesaffre and Lawson 2012). Its use in evidential reasoning is widely discussed, particularly through a statistic called a Bayes factor. In Spitzner’s work (2022), the Bayes factor is refashioned into a strategy for reporting evidence called pool reduction, whose approach is to enumerate possibilities rather than arguing from chance; among its advantages is that it contextualizes the implications of an evidence statement to decision-making. The pool-reduction strategy arose as part of a larger discussion motivated by criticisms over the use of p-values, especially the “dichotomania” (Greenland 2019, p. 112) of declaring a result significant when a p-value falls below a conventional threshold and the resulting overconfidence in research results when that occurs. Consider the hypothetical example of a study assessing the effectiveness of a mental health intervention for a group of people experiencing complex grief as an example. Suppose the data analysis of this study is formulated around testing the null hypothesis of no effectiveness and that it produces a p-value of about 0.04. A p-value is typically interpreted as the probability under a status quo hypothesis that the patterns observed in the data would occur by chance. Though a p-value is not derived from Bayesian ideas, its form as a probability value admits the use of the poolreduction strategy to translate it into a contextualized statement of evidence. In particular, probability need not be interpreted as “testimony of nature,” à la Hacking’s (2006), p. 44) discussion of probability and evidence. Such a translation might proceed as follows. The relevant hypotheses are first named and given context in terms of possible constructions of knowledge. The status quo hypothesis, denoted H0, is understood to reference one possible construction of knowledge that is consistent with no effectiveness. The alternative hypothesis, denoted H1, is understood to reference multiple possible constructions of knowledge, e.g., describing different magnitudes of effectiveness. The evidence report begins by asking the reader to consider an initial pool of two constructions, one consistent with H0 and the other with H1. The two constructions are distinguishable only by extra-empirical evidence, which is to say that they are indistinguishable by (quantitative or qualitative) data collected in the
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study at hand; choosing between them must instead be determined by such considerations as the prevailing sensibilities of the research team and their community. In Bayesian terms, the distinction is to be made by consideration of prior knowledge. The p-value of p ¼ 0.04, indicating support for H1, expands the pool in accordance with its implied odds ratio E ¼ p/(1 p) ¼ 1/24: multiplication by the denominator increases the initial pool size from 2 to 48 constructions (a 24-fold expansion) by the addition of constructions that are consistent with H1. Accordingly, the report is to state that a decision to conclude H0 in light of the expanded pool would reflect stronger extra-empirical evidence than would be reflected in same decision without having examined the data from which p is calculated, because a greater number of constructions will have been eliminated. We do not simply dismiss H0 based on chance reasoning, as often underlies conclusions drawn from a p-value, but make the tasks of decision-making clear. Origins of the type of reasoning demonstrated above may be traced to the literature on forensic evidence reporting. As discussed in Spitzner’s work (2022), such reasoning is inherent in a judge’s instructions to a jury in the 1996 Doheny case, a case argued before the England and Wales Court of Appeals. Redmayne (2002, p. 20) describes the scenario. Among the evidence in the case is a semen stain found on the clothing of a woman who had been raped. Forensic analysis of the semen stain connects it to the defendant. However, in a move that encourages the jury not to solely focus on forensic results, the judge conveys their interpretation that the evidence implies “that there are probably only four or five white males in the United Kingdom from whom that semen could have come” and that “the defendant is one of them”; the judge then instructs the jury to decide, based on “all the evidence,” whether “it was the defendant who left that stain or whether it is possible that it was one of the other small group of men who share the same DNA characteristics.” The reasoning conveyed by the judge is the same that underlies the pool-reduction strategy, though in reverse: here, a large initial pool (the UK male population) is reduced to a smaller pool (four or five white males). It illustrates that even strong empirical evidence does not support drawing a conclusion without consideration of extra-empirical evidence. Statistics under a qualitative mental model does not privilege statistics that are calculated from probabilistic algorithms, such as a p-value. When inferential questions arise, the pool-reduction strategy may be helpful to report evidence on the basis of verbal statements of strength of evidence, determined from the research team’s probing of the data, which can typically be converted into probabilistic summaries through the use of statistical conventions. For example, one familiar convention is a categorical scale of evidence by which modest, strong, or very strong support for H1 corresponds to the respective probability value p ¼ 0.1, 0.05, or 0.01, with the complementary values 1 p indicating parallel support for H0. The literature on Bayesian analysis provides other useful conventions for this sort of conversion. Among the most widely used is a scale of evidence presented in Kass and Raftery (1995), by which positive, strong, or very strong support for H1 corresponds to the respective probability value p ¼ 0.269, 0.047, or 0.007, which are reflective of
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round-number cutoffs exhibited through a mathematical transformation of corresponding odds ratios. In addition, the Bayesian framework supports a logic by which separate pieces of evidence may be combined by multiplying odds ratios, subject to the interpretation that each piece builds upon evidence of the previous pieces of the combination. In a mixed methods study, this logic provides guidance for seamlessly integrating evidence statements assessed separately from the qualitative and quantitative strands of a study. Suppose, for example, that in the hypothetical intervention study, the p-value p ¼ 0.04 is calculated from its quantitative strand, from which the pool-reduction strategy implies an expansion of the initial pool from 2 to 48 constructions. Suppose further that modest evidence for H0 is determined from the qualitative strand, which converts to a probability value of p ¼ 0.90. The product of these probability values’ odds ratio is E ¼ 0.04/(1–0.04) 0.90/(1–0.90) ¼ 9/24, which revises the expanded pool from 48 constructions to just 5 (an approximate 9/24-fold expansion of 2). A decision to conclude H0 would thus reflect much weaker extra-empirical evidence compared to the same decision subsequent to quantitative analysis only. The point of this exercise is not to insist that mathematics are to dictate how inferences are to be made in inquiry but to demonstrate a framework that integrates results without privileging automation. At the same time, the exercise offers to a research team a framework it might use to check their assessments while systematically thinking through an inferential process that is explicit about the types of knowledge that informs it. Overall, noting that the pool-reduction strategy is but one practice derived from the Bayesian framework, it demonstrates the promise and potential of that framework, reformulated under the concept of community knowledge, to offer guidance in organizing analyses without taking on the baggage of positivism.
4
Diffractive Methodology
The third route to upending quantitative methodology considered in this chapter arises by way of diffraction. Underlying this approach is a new materialist perspective, a set of assumptions that avoids dichotomies such as nature/culture and subject/ object; it discards the conception that discourse produces representations of reality, asserting instead that “matter and meaning are mutually articulated” (Barad 2007, p. 152). It emphasizes the study of entangled phenomena and motivates a methodology for doing so. Pienaar et al. (2017), for example, adopt this perspective in challenging the disease model of addiction, wherein addiction is a disorder of individual agency, by examining volition and compulsion not as fixed and oppositional attributes but as emergent and co-constituted, thus entangled within an addiction phenomenon. Pienaar et al. (2017, p. 522) write that a “diffractive analysis invites consideration of the ontological—and thus political—work performed by particular models of addiction and the dualisms so central to them.” Diffractive methodology is an alternative to reflective practices, which are viewed as continuations of representational thinking, the objection being that reflection
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constitutes a separation between one who reflects and what is reflected upon. Such resistance to representation clearly contrasts with traditional quantitative methodology, whose reliance on statistical models and mechanistic interpretations of probability are inherently representational. In addition, however, diffractive methodology is set apart from traditional qualitative methodologies, wherein reflective elements such as researcher positionality and reflexive research design are emphasized. Though reflexivity is not identical to reflection, Barad (2007, p. 88) describes it as “mirrored mirroring” and asserts that it “entails the same old geometrical optics of reflections” (see also Dixon-Román 2017, pp. 68–69). Diffractive methodology’s distinct optical metaphor – diffraction not reflection – refers to the interference patterns that accompany differences, as are exhibited in wave phenomena, such as light, when waves encounter obstacles or other waves. The methodology draws its intellectual lineage from feminist theory (see Butler 1993; Haraway 1992, 1997; Barad 2007); its perspectives overlap with recent ontological emphasis in health sociology (Fox 2016, p. 67; Mol 2002); and it has been applied in recent years with increasing frequency (in addition to the examples below, see Palmer 2011; Mazzei 2014; Dixon-Román 2016a; Levy et al. 2016; Hill 2017; Taylor and Gannon 2018; Lazar et al. 2021; Magnusson 2021). For additional discussion, see Kaiser and Thiele (2014), Murris and Bozalek (2019), Dunk (2020), and the references below. Supporting perspectives are profoundly anchored in context and relationality, among which is Barad’s (2007), p. 73) philosophy of agential realism. This philosophy is interested in “the entangled structure of the changing and contingent ontology of the world, including the ontology of knowing,” and proposes the use of “diffraction apparatuses” to highlight, exhibit, and make evident this structure. Building upon insights from quantum mechanics, it formulates that “discursive practices and material phenomena do not stand in a relationship of externality to each other” but are “mutually implicated in the dynamics of intra-activity,” where the latter term is used to emphasize that bodies do not have fixed, prior, or clear boundaries but are co-constituted as material-discursive phenomena. Moreover, Barad asserts that discursive practices do not produce bodies; rather, discursivematerial apparatuses produce phenomena, and the differential boundaries between bodies that unfold are the result of an “agential cut” made by, for example, a researcher during the course of data collection, analysis, and interpretation. The boundaries are emergent and temporary and are understood as an articulation of “the iterated intra-activity of the world in its becoming,” which is how “matter comes to matter” (pp. 151–153, original emphasis). Here, the word “iterative” is a trace of Butler’s (1993) theory of performativity, which Barad admires but criticizes for its anthropocentric limitations, and works into agential realism through the idea that the world itself performs. By this view, diffractive methodology can refer to either of two practices: (A) the study of entangled phenomena or (B) the use of diffraction as a tool of analysis. Oftentimes, Practice B enables Practice A. Both practices can be important and useful in health research and for upending quantitative (and qualitative) methodology. Following Barad (2007, p. 90), in both practices, “knowing, thinking,
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measuring, theorizing, and observing” are understood as intra-acting material-discursive forces. Diffraction involves “reading insights through one another,” while treating none as a fixed frame of reference, to illuminate differences through the interference patterns that emerge (p. 30). Some of the most interesting patterns arise when the insights read diffractively are quite varied in type, such as, say, a research participant’s interview narrative read through the visual style of a television show, as in an example discussed below. As a refinement of the methodology, Lenz Taguchi (2012) draws on the idea of transcorporeality (Alaimo 2008, 2010), allowing diffractive reading to involve other bodily faculties than the mind (e.g., smell, touch, tension), and Deleuze and Guattari’s (1987) idea to push away from dominant assumptions and practices, to instead become “minoritarian.” Most relevant to present discussion, Dixon-Román (2016b, 2017) emphasizes the relevance of quantitative data within diffractive methodology and in doing so upends traditional quantitative methodology. Pienaar et al.’s (2017) above-referenced study of volition and compulsion in the context of addiction would be an example of Practice A. An example of Practice B is Lenz Taguchi and Palmer’s (2013) study of school-related ill- or well-being in girls. At issue is a prevalence of scientific and media reports that connect stress and anxiety to aspirations for high achievement, a connection that is sometimes called “good-girl syndrome,” and furthermore claim that the girls themselves, or their families, are the cause of ill-being. The diffractive apparatus the researchers set up and use to study this phenomenon incorporates data in the form of a variety of the scientific and media reports alluded to, above, together with stories and photographs shared with the authors by two 7’th and 10’th grade school girls, Alice and Emma, who respond to their questions about “specific spaces, places, things, and practices or activities that mattered to experiences of ill- or well-being” (p. 675). Understanding that a diffractive apparatus is itself a material-discursive phenomenon, hence the researchers are co-constituted with it, they acknowledge their social position and count as data memories their own experiences with young girls’ ill-being of the kind reported within the relevant scientific and media reports. Lenz Taguchi and Palmer (2013, p. 675) describe their engagement with the data as a “rhizomatic zigzagging flow.” The two of them would sit together surrounded by their data, read written material to each other out loud, examine photographs after using software to manipulate them in various ways, and talk or tell stories about their experiences. This collaborative process created for the authors a physical experience of the interference patterns created by the data; they describe a sense of passing themselves over to a flow of entangled forces as “one text would link, connect or collide with another, and produce something new or different” (p. 675). Lenz Taguchi and Palmer find that school-related ill- or well-being is a complex, entangled phenomenon, which cannot be simplified to a psychological maladjustment or disorder of individual girls. Diffractive patterns created linkages and collisions across physical and imaginative environments of high school, surfacing stories of daily motion sickness on train rides to school, school architecture that leaves girls feeling always watched or at risk of taunting from older boys, and the locker as a rare space of personal wholeness, which can connect girls to transformative effects of
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television shows that offer alternative visions of high school. The researchers examine the entangled manner in which stress can be both positive and negative. Tying these pieces together, they are cautious about drawing conclusions about individual over-achieving behavior and instead emphasize that responsibility for school-related ill- or well-being is distributed across multiple intra-acting agents. Notwithstanding Dixon-Román’s (2017), p. 46) questioning of the “ongoing divide between the quantitative and the qualitative,” the examples above rely primarily on qualitative data. In a move that upends quantitative methodology, Dixon-Román (2016b) holds up argumentation of Deleuze and Guattari (1987), Butler (1993), Rotman (2000), Barad (2007), and others that undermines the positivist assumption that mathematical logic is the language of nature and instead supports the characterization of mathematics as cultural, either invented by humans or as a discursive practice always already existing in nature, the latter via the lens of Kirby’s (2011) new materialist “quantum anthropologies” theory of entanglement. Subsequently, it is asserted that a statistical mean, for example, gains social meaning through performative acts, such as naming it the statistical mean of so-and-so, and other acts that occur during the collection, measurement, and compilation of data on which that statistic is based. Such argumentation ultimately destabilizes any representational understanding of the statistical mean and reconceptualizes it as an entangled phenomenon of intra-acting performativities. The view that measurement and statistics are cultural inventions pushes diffractive methodology to a framework that emphasizes not only the use of varied data types but varied research methods, which can, as Dixon-Román (2016b) argues, include quantitative methods. By revealing that mathematics is an entangled phenomenon, one can conclude that Dixon-Román’s (2016b) analysis, implemented as a survey of major paradigmatic shifts in social inquiry, is an example of Practice A. Importantly, the author also offers an example of Practice B, one that illustrates its relevance to quantitative methodology. This appears in Dixon-Román (2017), as a study that examines the SAT, a standardized test whose scores are to be included in college applications, as an objective tool for measuring academic merit. The study makes use of results of quantitative analyses of data from the National Longitudinal Survey of Youth, which derive from statistical techniques such as logistic regression and structural equation modeling; these are read through research articles, narrative data from biographical texts and radio interviews, fictional television high-school characters, Internet data on the SAT scores and lives of several public figures, and Dixon-Román’s own memories of preparing for and taking the SAT. Among the broader findings of this study is that the SAT does not measure innate, fixed ability but is entangled with a myriad of intra-acting forces and that it has created in society a new system of social reproduction, replacing an older, more explicitly class-based system, where academics and the affluent retain an advantage. At a finer level, Dixon-Román’s analysis uncovers interesting dynamics of test preparation that are hidden in quantitative analysis and interesting contrasts between larger statistical trends and outlier data exemplified in the lives of specific individuals. The professionally successful singers/songwriters Kesha and John Legend are two such outliers, who grew up in working-class homes but scored highly on the
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SAT. Readers learn that the homes and schooling experiences in which Kesha and Legend grew up nevertheless provided substantial enrichment, specifically related to music and songwriting; moreover, Legend happened to be in the right place at the right time in college, when fortuitous pathways into the music industry become open to him. These examples highlight the performativity of number and shine a light on the phenomenon of quantitative data intra-acting within a larger social context. They support Dixon-Román’s (2017), p. 47) sober view of the quantitative not as “more closely aligned to the fixed pure and essential characteristics of the natural world” but “simply a special case of the ethnographic.”
5
Conclusion and Future Directions
This chapter highlights three quantitative methodologies that are recontextualized for sensitivity to political and ethical considerations and are, thus, relevant to the imperatives of the new public health to prioritize social factors in health and health inequity. Statistics for marginalized groups is a pragmatic approach that is validated by its capacity to improve lives. It substantially overlaps with social epidemiology, especially in terms of its rejection of biomedical essentialism, while putting a stamp on the importance of stakeholder participation in research. Statistics under a qualitative mental model is a quantitative methodology that makes inferences on numbers in the same way as on words. In an MMR context, it is a single-paradigm approach for integrating a study’s qualitative and quantitative strands. A Bayesian framework can offer systematic guidance for organizing analyses and addressing inferential questions. In particular, the pool-reduction reporting strategy arises from this framework and can be helpful to contextualize inference and integrate evidence across data types. Diffractive methodology derives from new materialist perspectives, which challenge the assumptions of traditional research methodologies at their most foundational levels by rejecting representational ontologies in favor of a world of intraacting material-discursive phenomena. As an analysis tool, this methodology is practiced as an iterative process of reading varying forms of data through each other and taking note of the interference patterns that emerge. Incorporating varying methods, as well as data, into diffractive reading admits the use of quantitative methodology, which becomes upended in the process. While the focus of this chapter is the recontextualization of quantitative methodology, it has not addressed the abstractions that have guided the development of specific statistical techniques and research designs. Techniques such as regression were not developed in a vacuum but originated in projects that reinforced unjust social hierarchies (Dixon-Román 2020, p. 95). If regression had not already been invented by hegemonic positivists, would some roughly analogous statistical technique have been invented by researchers who prioritize social justice? If so, how would it be different? On what basis would the technique have been argued as relevant? The issues raised by such questions are germane to the ethical development
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of statistical tools and may help to respond to expressed criticisms of social-inquiry methods related to generalizability, transferability, and capacity to inform policy (see Fox and Alldred 2021; Maxwell 2021). Some pieces of a conceptual guiding framework may have already been laid down, through perspectives that emphasize iterative and recursive processes (cf. Dixon-Román 2020, p. 96; Parisi and DixonRomán 2020) and the argumentative dynamics of community knowledge, discussed above. In global public health’s current-day and future research environment, the prevalence of quantitative and qualitative data is likely to steadily increase, as are efforts to make use of those data in inquiry. As a recent and prominent example, the vast troves of data generated in response to the COVID-19 pandemic – as, e.g., institutional monitoring reports (Prah Ruger 2020a), caches of notes from health clinicians (Chang et al. 2021), and short message service radio broadcasts (Riha et al. 2021) – have motivated research communities to embark upon the analytical work that would derive lessons that are to be gained from them. Among seven articles published in a recent special issue of the Journal of Mixed Methods Research devoted to the COVID-19 pandemic (see Fetters and Molina-Azorin 2021), three make use of techniques that are specialized for processing large data sets. Prah Ruger (2020b, p. 1) observes that the pandemic is a “natural experiment” that provides a rare opportunity for quantitative study of the relationships between health and political institutions. The methodologies discussed in this chapter benefit such efforts by upending traditional philosophical restrictions on what research is, whom it is for, and how it is to be carried out. They are valuable specifically for insisting that explicitly ethical criteria have a central role to play in defining the aims and priorities of research. They stimulate creative, innovative researchers and developers of methodology in their pursuit of deep, contextualized knowledge. They emphasize the importance of community perspectives in research. Borrowing terminology from Inhorn and Whittle (2001, p. 554), the methodologies discussed here are valuable for recontextualizing research to support the “public health” dimension of global public health.
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Mixed Methods Research in Global Public Health Dan J. Spitzner and Cara Meixner
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 What Is Mixed Methods Research? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 What Is Global Public Health Justice Research? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 How Can MMR Address Global Public Health Justice Issues? . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 MMR Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Mental Models . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Positionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Integration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Practices to Achieve Full Integration . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Major Approaches to MMR in Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Explaining Quantitative Results with Qualitative Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Using Qualitative Methods to Select Measures for Quantitative Validation . . . . . . . . . 5.3 Participatory Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Mixed methods research (MMR) systemically and intentionally integrates quantitative and qualitative methods to explain, explore, or contextualize social phenomena. What such synergies offer is particularly well suited for a deep and broad inquiry into public health – particularly research in global public health justice. This chapter illuminates connections between MMR and justice studies, highlighting their associated epistemic contours. The reader is guided to consider how MMR may deftly address global public health justice issues, with D. J. Spitzner (*) Department of Statistics, University of Virginia, Charlottesville, VA, USA e-mail: [email protected] C. Meixner Department of Graduate Psychology, James Madison University, Harrisonburg, VA, USA e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_52
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consideration given to mental models, researcher positionality (e.g., social location), and data integration. Anchoring the chapter is a sampling of ideas, techniques, and practices showcased through four authentic studies. Keywords
Mixed Methods Research · Global Public Health · Global Public Health Justice
1
Introduction
This chapter discusses the potential and possibilities for carrying out an inquiry into global public health using mixed methods research (MMR), a methodology that intentionally interweaves qualitative and quantitative data in the same study. As global public health shifts from a biomedical to a biopsychosocial emphasis, which prioritizes the study of social and cultural factors in health as much as treating disease, MMR has arisen as a research methodology that enables a deep understanding of complex social phenomena. As is argued, MMR is also compatible with justice-oriented approaches to global public health for its amenability to implementation under the guidance of theoretical frameworks in social sciences and research goals that are formulated in terms of ethical criteria. The discussion below describes the contexts of MMR and global public health justice research, touching on the types of questions that MMR is particularly suited to address, the scope and aims of global public health justice, and how MMR addresses issues in global public health justice. Later sections discuss aspects of inquiry, such as mental models, integration of methods, and positionality that would sensitize researchers to apply MMR in this context. The chapter culminates with a showcase of several case studies illustrating the use of MMR in global public health, followed by conclusions.
1.1
What Is Mixed Methods Research?
Mixed methods research (MMR) summons exploration of research quandaries through a synergistic lens; in this way, MMR merges, connects, or blends qualitative and quantitative methods to arrive at an integrative understanding of social phenomena (Creswell 2015; Meixner and Hathcoat 2019; Meixner and Spitzner 2021). Meixner and Spitzner (2021, p. 3) wrote, “MMR stands as much more than cobbling quantitative findings with qualitative insights. Rather, MMR beckons researchers to formulate a Gestalt – with quantitative and qualitative data emanating from the ground, and with their integrative outcomes comprising an inclusive figure.” MMR, thus, allows for a deep and broad inquiry into phenomena related to global health justice, such as social determinants of health. Tashakkori et al. (2021, p. 9) described MMR as a third research community – one for which questions “are best answered with information that is presented in both
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narrative and numerical forms.” This third community, of note, extends from two others: (1) quantitatively oriented researchers working, writ large, from a postpositivist paradigm (see Sect. 4.2); and (2) qualitatively oriented inquirers whose work is principally rooted in constructivism (see Sect. 4.2). Of these two, some researchers may consider themselves purists – true only to their method and epistemological-ontological orientations (see Hathcoat et al. 2019; Denzin 2010). Others – the integrationists – may be seen moving in and out of the third community referenced above. Within the third research community, MMR may address several broad genres of methodological questions, including the following (Creswell 2015; Creswell and Plano Clark 2018): 1. How might a more persuasive, evocative understanding of this phenomenon be achieved through the integration of qualitative and quantitative methods? 2. How might qualitative data help to explain extant quantitative results? 3. How might a problem or opportunity be explored first through qualitative methods – upon which results are built into a quantitative follow-up study? 4. How might a problem or opportunity be researched through an intervention or program, within which qualitative (or quantitative) data support quantitative (or qualitative) data? Contextualized examples of these questions, drawn from global public health research, will be explored further in Sect. 5. Mixed methodologists foretell a bright future for MMR, aptly summarized in the quotation that follows (Mertens et al. 2016, p. 222): The world of [MMR] is in some ways like a kaleidoscope – an elegantly simple device made of a cylinder, mirrors, and pieces of plastic or glass that produces seemingly unpredictable patterns full of rich possibilities for diversity and potential to provide opportunities to see things that have not yet been seen.
To contextualize things unknown or underrepresented is indelibly important in global public health – especially so in health justice research.
2
What Is Global Public Health Justice Research?
The term global health justice can refer broadly to an orientation toward public health policy and research that attends carefully to such goals as the alleviation of health inequities worldwide. The term has, however, also taken on a specific meaning in reference to global health governance, which addresses the roles and responsibilities of global and local communities, states, and institutions in matters of global health (Prah Ruger 2009). Among prominent voices in this area is that of Prah Ruger (2012, p. 654), who grounds health justice in “moral conceptions about equity and capability” while identifying shortcomings in alternative foundational principles
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such as a rational actor model, where states and institutions are guided by an aim to maximize self-interest. Noting a theoretical vacuum in global health governance, Prah Ruger (2018, p. 89) offers a theory of provincial globalism, which derives from the notion that “human flourishing” – an idea attributed to Aristotle – is a common good whose promotion serves everyone’s interest. It argues for standards derived in terms of health capability, which refers to access to state or achievements of health, over functionings, which are the states or achievements themselves (ibid.), as an effective basis on which to “reveal the deprivation and suffering many individuals experience worldwide” (Prah Ruger 2018, p. 87). Closer to matters pertaining to MMR, global health governance recognizes an important role of epistemic communities in providing interpretations of phenomena (Haas 1992) and embedding ideas into institutional norms and rules (Prah Ruger 2012). Haas (1992, p. 2) describes these communities as “networks of knowledgebased experts” and is careful to expand their definition beyond scientific communities. Specifically, “what bonds members of an epistemic community,” writes Haas (p. 3), “is their shared belief or faith in the verity and the applicability of particular forms of knowledge or specific truths,” which need not involve a shared faith in a presumed scientific method. Research approaches in global public health have evolved in the late twentieth century from a disease model to a social model, which recognizes that “health is constructed socially and culturally” (Liamputtong 2022, p. 3). Rather than focusing on the medical treatment of individuals, this new public health accounts for social factors that may affect health, such as poverty and racism. Evolving with this new approach is a supporting discipline of social epidemiology, a research methodology for studying population health from a mindset that, according to Inhorn and Whittle (2001, p. 554), embraces theory – drawing from “the humanities, human ecology, political economy, and even postmodernism” – over decontextualized analysis, as well as multidisciplinary approaches that would account for social context. Krieger (2001, p. 669) describes social epidemiology as “a marriage of sociological frameworks to epidemiological inquiry.” Related efforts (see Krieger 2021) develop an ecosocial framework for understanding pathways through which social and ecological environments affect health. Global health justice can also refer to research efforts that are organized around an explicit goal to improve the lives of people in marginalized groups. Pratt (2021) describes an ethical framework that would guide research programs devised with such a goal in mind. The framework holds up research that embraces the deep involvement of community members in formulating questions and designing a study approach, as well as in participating in the study itself (e.g., communitybased research, participatory action research). As an example, Kukutai and Walter (2019) describe a particular methodology they characterize as Indigenous research “by and for” Indigenous people, among whose attributes is that it is to be implemented by community members who are embedded in a group’s culture. Research of this sort recognizes cultural differences between dominant and marginalized groups and is aware of such hazards as victim-blaming when the priorities of a
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dominant group are applied in comparisons of health across populations (see Kukutai and Walter 2019; Inhorn and Whittle 2001; Smith 2012). The explicit goal to improve the lives of people acknowledges that ethical values have a role to play in inquiry, and draws a sharp contrast with scientific approaches to research and their insistence on detachment and dispassion. Within MMR, where guiding perspectives on inquiry are rigorously debated, the transformativeemancipatory perspective (a.k.a. transformative perspective) has been carefully developed to steer the use and interpretation of methodology in studies whose goals are shaped by values of social justice (see Mertens 2003). This perspective is discussed further in Sect. 4 below. From these remarks, global health justice covers an array of issues, among which include large-scale efforts at coordinating states and global institutions and narrower efforts to articulate the assumptions of a particular research study. A number of common threads across these efforts are apparent: Twenty-first-century global health justice is willing to soften or discard rationalistic or scientific perspectives in favor of ethical guiding frameworks; it is also willing to soften or discard notions of objectivity in research that derive from the detachment in favor of examining phenomena closely and learning about people’s experiences of health. In addition, global health justice recognizes the utility of health capability and its social dimensions to guide its efforts, asserting that human flourishing is a common good and that health is determined not only by exposure to disease but by a person or group’s social environment.
3
How Can MMR Address Global Public Health Justice Issues?
Neither numbers nor narratives nor observations alone can aptly account for the expanse of phenomena nested under the auspices of global public health justice (e.g., health capability, human flourishing). Take, for instance, social determinants of health in any one, or more, global context(s). To dilute a social determinant (e.g., economic stability) to statistical configurations may be unnecessarily reductive, eschewing opportunities to probe for depth, nuance, and context. And to explore the manifestation of a determinant such as economic stability solely through qualitative means may later restrict opportunities to broaden understanding of its effects on health – particularly as inquirers and advocates work toward reform. Despite this argument, the broader discipline of public health has historically adhered to a dominantly quantitative approach steeped in postpositivism (Kaur 2016). Nevertheless, the National Institutes of Health’s (NIH) Best Practices for Mixed Methods Research in the Health Sciences (Creswell et al. 2011, p. 2) notes “an extraordinary surge in methodological diversity” within health research. It furthermore states, This diversity reflects the nature of the problems facing public health, such as disparities among populations, age groups, ethnicities, and cultures; poor adherence to treatment
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thought to be effective; behavioral factors contributing to disability and health; and translational needs for health research. (Creswell et al. 2011, p. 2).
In other words, methodological diversity is a response to the complexity of the public health landscape. The Best Practices guide goes on to recognize the value of methodologies such as MMR that would achieve a deep, nuanced, and contextualized understanding of the phenomena at issue: The diversity also signals a growing acceptance of qualitative and social science research, the formation of interdisciplinary research teams, and use of multi-level approaches to investigate complicated health problems, such as the patient’s point of view and cultural and social models of illness and health. (Creswell et al. 2011, p. 2).
As further acknowledgment of the value of MMR, the National Science Foundation’s User-Friendly Manual for Mixed Methods Evaluations (NSF 1997) presents the voices of evaluators who, in telling the full stories behind their projects’ life cycles, convey an imperative of combining quantitative and qualitative techniques. In consideration of how MMR may address phenomena under the banner of global health justice, researchers are also advised to consider participatory processes. Research has a torrid, predatory past in many global communities, particularly those that are indigenous, minoritized, underserved, and overstudied (see Smith 2021; Tuck and Yang 2014). Community-based, participatory research – within which participants have voice, authority, and agency as co-inquirers – adapts agilely around the use of intertwined qualitative and quantitative strands. As an example, Afifi et al. (2010, p. 510) describe a participatory MMR project with a Palestinian refugee community in Beirut: refugee youth, their parents, and their teachers collaborated with academic researchers and a Community Youth Committee (CYC) comprised of “17 NGOs that work with youth in the Burj Camp, funders of projects. . . community residents, youth, and members of the Urban Health Youth Working Group from the American University of Beirut.” Despite such need for and acceptance of qualitative and social science research methodologies, a relatively scant – though growing – number of MMR studies on issues pertaining to global public health are published. This extends to adjacent disciplines in the health and behavioral sciences. In a prevalence study of MMR in the fields of speech-language pathology and audiology (SLPA), for example, Suleman and Hopper (2014, p. 386) found that these are “infrequently published in the journals of SLPA reviewed in this study (i.e., less than 1.2% prevalence rate). . . [though] it is anticipated that the use of MM designs will increase.” Alise and Teddlie (2010) estimated that just 7% of the empirical studies found in American Psychological Association (APA) journals were MMR; Powell et al. (2008) formulated a higher estimate (13.7%) in school psychology, which is an applied field. Of note, the rates reported above are “decidedly below the rates reported for applied fields in education and nursing” (Creamer and Reeping 2020, p. 9), which may hearken opportunities for public health. Fortunately, changes have been – and continue to be – on the horizon. In Qualitative and Mixed Methods in Public Health,
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Padgett (2012, p. 47) portends “the momentum behind this [MMR] trend is unlikely to slow down anytime soon.” For instance, calls from funders for a more expansive comprehension of health phenomena – to include more robust research methodologies – may be moving the needle in favor of MMR.
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MMR Considerations
What follows in the section below are considerations that help sensitize researchers – both novice and skilled – to implicit and extant elements that irrevocably affect the inquiry landscape: mental models, positionality, and reflexivity. Such considerations are especially integral considering the above-referenced indignities and abuses sustained by humans globally because of unethical research practices (Smith 2021; Tuck and Yang 2014).
4.1
Mental Models
MMR recognizes the complexity that is introduced by the coordinated use of qualitative and quantitative methodology due to conflicts between the research traditions within which these methodologies arise. Its literature includes a long history of debate over a variety of accompanying issues (for review, see Denzin 2010), many of which parallel debates in global public health around such matters as the inadequacy of rationalistic approaches to achieve goals that are defined from ethical criteria, the importance of social and cultural context in understanding health and the distinctions in both perspectives and power between dominant and marginalized groups. By and large, MMR recognizes that a researcher’s values and philosophical stance (see Sect. 4.2) impact a study at every stage, from planning to data collection, to analysis, to interpretation, to reporting (Hathcoat and Meixner 2017). In discussions of this propensity, the term mental model has become a useful, broad term, which encompasses the “set of assumptions, understandings, predispositions, and values and beliefs” (Greene 2007, p. 53) that a researcher carries into a study. Closely related terms that are also commonly used include paradigm, in reference to the paradigm shifts studied in Kuhn (1996), and worldview, in reference to Guba and Lincoln’s (2005) compilations of axiology, ontology, epistemology, and methodology (see also Denzin 2010; Mertens 2018, p. 13; Morgan 2007; ShannonBaker 2016). Underscoring the importance of a researcher’s mental model, Smith (1997, p. 73) asserts that “action is impossible unless the one has constructed a mental model, image, or definition of the situation.” Philosophical debates in MMR have long revolved around the two poles of postpositivism and constructivism, which are, respectively, associated with a traditional quantitative and qualitative methodology. Postpositivism embraces the guidance of scientific principles; it prescribes that research is to be carried out dispassionately, on the basis of observations that are made at a distance from its
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research subjects, in order to protect a study against bias. In contrast, from a constructivist perspective, “interaction between the researcher and the participants is felt to be essential” (Mertens 2003, p. 141). The guidelines of each of these perspectives are supported by contrasting interpretations of reality, with postpositivism drawing on the concepts of truth and independent reality, and constructivism allowing for multiple truths and the coexistence of multiple realities. See Crotty (1998), Guba and Lincoln (2005), and Creswell (2014) for additional discussion. While the divide between postpositivism and constructivism remains a focal point of debate, recent discussion has sought to broaden the framework of debate in various ways. A 2019 special edition of the Journal of Mixed Methods Research (see Fetters and Molina-Azorin 2019a) compiles an array of additional perspectives, which includes a call for articulation of those from non-Western thinkers (Fetters and Molina-Azorin 2019b). The framing of paradigm debates in MMR is also subject to the criticism of theorists grounded in new materialism for maintaining a divide between qualitative and quantitative knowledge (see Dixon-Román 2017, p. 46).
4.2
Positionality
Positioning oneself in inquiry calls for an exploration of worldview as a reflexive undertaking – one that shifts and evolves with, of, and alongside the research context. Positionality theory recognizes individuals’ multiple, overlapping identities, taking as a central tenet the rejection of a fixed, unchanging, and essentialist viewpoint of identity (Kezar 2002). Drawn from postmodern feminist theory, positionality theory further “suggests that identity is fluid and dynamic and affected by historical and social changes. The concept focuses on the intersection of various aspects of a person’s identity, such as race, class, and gender” (Kezar and Lester 2010 p. 165). Meixner and Spitzner (2021, p. 16) discuss positioning in the context of socially inclusive MMR, acknowledging that “the deconstruction of power subtleties, the recognition of implicit biases, and the legitimization of others’ lived experiences all constitute processes in which researchers must be willing to engage and selfcriticize.” Speaking to this, commentators have highlighted the distinction between a researcher’s position that is etic (i.e., outsider) to a phenomenon versus one that is emic (i.e., insider). The latter may refer to a situation wherein the inquirer “lives” the very phenomenon being investigated given an overlapping positionality with participants and/or the locus of inquiry (see Diaz-Strong et al. 2018; Smith 2006, 2021). Whether emic, etic, or a combination thereof, inquiry into one’s positionality may manifest in many forms. For Bourke (2014, p. 2), a white researcher engaged in a study of how students of color perceive their lived experiences at a Predominately White Institution (PWI), research was conceptualized as both a process and product
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requiring ongoing researcher reflexivity – “a self-scrutiny. . .a self-conscious awareness.” Saldaña (2018, p. 2037), who situates himself as a pragmatist, confesses researchers are more than reflexive – they are also autoethnographic: “introspective about our own investigative journeys – metacognitive about what, how, and especially why we’re doing what we do.” Observe the variety of reflective practices at play: self-scrutiny, self-awareness, introspection, and metacognition – just a sampling of additional possibilities. England (1994) argues for methods that both invite and center social phenomenon as intersubjective (i.e., shared subjectivity of individuals in a community), hence reflective practices that are anchored in this emphasis. Such argumentation deftly challenges a social science landscape that upholds a neopositivist empiricism separating the subject from object. Herein, the researcher’s “professional armor includes a carefully constructed public self as a mysterious, impartial outsider, an observer freed of personality and bias” (p. 81). Recalling Stanley and Wise (1993), England warns that such an approach – one that objectifies the other – is unjust. Other scholars have traced the limits of reflexivity through its contrast with diffractive perspectives (see Barad 2007; Dixon-Román 2017; Hill 2017). Whereas reflection connotes a cognitive, reality-mirroring process premised on the extraction of objectives representations (Barad 2007; Hill 2017), diffraction invites “attending to difference, to patterns of interferences, and the effects of difference-making practices” (Hill 2017, p. 2). As an example of positionality within a diffractive approach, consider Dixon-Román’s (2017, p. 152) study of multigenerational inequality and academic achievement. By diffractively reading his “average public high-school GPA and enrichment opportunities, and [his] mother’s level of education” through SAT data, he brings to the fore his own positionality.
4.3
Integration
Integration refers to the matter of arriving at a holistic methodology derived from constituent qualitative and quantitative tools, i.e., the mixing of methods. A rich debate surrounds questions of whether integration is feasible at all, given the drastic philosophical distinctions between postpositivism and constructivism, and, if it is, how integration is to be accomplished. Teddlie and Tashakkori (2003) identify a variety of answers that have been given to these questions. Among them include such assertions as the following: conflicts between underlying paradigms make it impossible to judge a mixing of qualitative and quantitative methods under a common standard; paradigms and methodologies are suitably independent such that methods may be commensurable even when their guiding paradigms are not; and, distinct methods may yield complementary knowledge, but must otherwise be implemented and interpreted separately in order to preserve their validity. Creamer (2018, p. 3) writes about the influence of the triangulation concept in guiding
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researchers who were engaged in heated debates around these issues to find common ground. Triangulation involves the “corroboration or verification through multiple data points or multiple types of data about the same phenomenon.” In addition, dialectical pluralism “actively welcomes” the use of distinct methodologies in inquiry and asserts that they may be put into “respectful dialogue one with the other” (Greene and Hall 2010, p. 124) (see also Greene 2007; ShannonBaker 2016). Varieties of pragmatism have also been put forward as a means to unify paradigms. This position asserts that “assumptions are logically independent and therefore can be mixed and matched, in conjunction with choices about methods, to achieve the combination most appropriate” (Greene and Caracelli 1997, p. 8). An anchoring in pragmatism is extraordinarily common in MMR studies (Bryman 2007); however, it has also been subject to criticism for elevating expediency over a principled approach to inquiry and the depth of knowledge that is to be gained from it (see Cherryholmes 1999; Hathcoat and Meixner 2017). The transformative paradigm, a research perspective that is particularly compatible with global public health research, stands out among approaches to integration for centering its guiding principles around ethical criteria. Mertens (2012, p. 256) describes such principles as emanating “from an ethical stance that emphasizes the pursuit of social justice and the furtherance of human rights.” Teddlie and Tashakkori (2003, pp. 17–18) bundle the transformative paradigm with general pragmatism as examples of a “single paradigm” approach to integration. Both derive the validity of mixing methods from the mix’s effectiveness in supporting the overall goals of the research. Though the transformative paradigm shares aspects of pragmatism, it stands out for its embrace of critical theory, and its emphasis on collaboration with and advocacy for marginalized communities. Its emergence in MMR has coincided with frustration over modes of inquiry that have been ineffective at capturing health and other life experiences among members of marginalized groups (Mertens 2018).
4.4
Practices to Achieve Full Integration
Drawing on terminology introduced in Teddlie and Tashakkori (2003), Creamer (2018, p. 12) correlates the phrase “fully integrated” MMR with the intention to integrate qualitative and quantitative methodologies “throughout each of the stages or phases of the research process.” For use in the analysis stage, she offers (p. 104) a non-exhaustive list of analytical practices that might contribute to achieving full integration: • Blending, where a new variable or category is created from a combination of qualitative and quantitative data. • Converting, where qualitative and quantitative data are put into the same format so they may be analyzed together. • Extreme-case investigation, where particularly careful consideration is given to unusual cases.
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• Cross-case comparison, where a combination of qualitative and quantitative data is used to construct case profiles for comparison across cases. • Meta-inferences, where inferential statements are devised to reflect a combination of qualitative and quantitative data. Creamer (2018, pp. 83–96) additionally discusses integration practices that would be used at earlier stages of a study. Examples of such practices include the following: In the stage of articulating research questions, the intent to integrate methodologies may be conveyed with precise wording that would associate certain facets of the phenomena under study with particular data types. In the study design stage, probability sampling (wherein cases are selected randomly) and purposeful sampling (wherein cases are selected by expert judgment) may be integrated through scheduling choices or overlaps in the sample membership. This is also where extreme cases may be deliberately selected for close examination in the analysis stage. In the data collection stage, a framework for integration practices that are to be used in the analysis stage (e.g., the creation of new variables) is put into place. The plan of a study may involve a complicated set of decisions around such matters as the timing or order in which samples are selected, the priority of qualitative and quantitative information in analysis and interpretation, and the precise points at which integration occurs. An extensive typology has been developed for coordinating these elements in sophisticated MMR designs (see Creswell and Plano Clark 2018). In addition to specific practices, the MMR literature includes a variety of broad integration strategies for designing a study. A strategy described by Hall and Howard (2008, p. 250) operates under four core principles, labeled as “the concept of synergy, the position of equal value, the ideology of difference, and the relationship between the researcher(s) and the study design.” These are claimed to create a synergism between the “linear or logical in flow” (p. 248) of typological designs (alluded to, above) and the interactivity found in Maxwell and Loomis’s (2003) systemic design approach. As another example, Watson’s (2020, p. 68) methods-braiding design strategy can integrate a diverse range of methods, not limited to qualitative and quantitative, but extending to those of, e.g., arts-based research as well. This strategy “actively seeks complex and creative integration.” Methods braiding is implemented in multiple phases, separated by “intensive periods of reflexive evaluation” (p. 69); within a phase, researchers would strive to give all methods equal consideration. Other integration strategies are described in, e.g., Hesse-Biber (2010), Nastasi et al. (2010), Denzin (2012), and Creswell and Plano Clark (2018). Another integration practice is to compose and manage a research team in a manner that supports integration. Bryman’s (2007) investigation into potential barriers to integration uncovers that skill specialisms, where team members see themselves as falling into one camp or another (e.g., statisticians or qualitative researchers), can lead to a compartmentalization of roles that hinders integration. This highlights the importance of taking steps to expose and familiarize members of a camp with the perspectives and argumentation of other camps. Such practices are on par with research practices in global public health that would enhance the cultural competence of research teams.
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Major Approaches to MMR in Global Public Health
The following showcases a sampling of the ideas, techniques, and practices discussed above in several examples of MMR studies. It is roughly framed by the list of broad methodological questions appearing in Sect. 1.1, above. To start, Kett et al. (2021) offer an illustration of how qualitative data are used to explain quantitative results. Next, Betancourt et al. (2011) highlight the use of qualitative methods to initially explore a phenomenon and plan a quantitative follow-up study. Thirdly, Bodini and Gentilini (2020) describe a carefully integrated study that proceeds under a participatory action-research design. Finally, Skinner and Masuda (2013) describe a community-mapping project that brings in arts-based practices.
5.1
Explaining Quantitative Results with Qualitative Data
The focus of inquiry in Kett et al.’s (2020, p. 2) study is the experiences of people with disabilities in Liberia, and their communities, during an Ebola outbreak in 2014–2017. The authors note that social factors (e.g., poverty, substandard accommodation) put people with disabilities at greater risk of contracting or becoming seriously ill from Ebola and other infectious diseases, yet they are rarely prioritized when planning interventions. Seeking depth of understanding, the authors are partly motivated to apply MMR from their observation that . . . while focusing on the disabling consequences of Ebola is important, widening the focus further to examine how persons with disabilities, their families, and their caregivers were included in the Ebola response, and how Ebola affected their lives, is an important component of understanding wider issues around equity and social justice for marginalised and excluded groups.
This reiterates an approach to public health that extends beyond a medical model to social factors. Kett et al. (2020) had not initially planned to study Ebola but moved in that direction when an outbreak began during the initial phase of a comparative household survey of disabled and nondisabled people. Thus, they modified the householdsurvey tool by adding a set of Ebola-related questions and planned a follow-up qualitative phase in the form of semi-structured interviews with community leaders, health professionals, and other stakeholders and a series of focus groups comprised of persons with disabilities and Ebola survivors. Though integrating methodologies may not have originally been a central concern of the authors, they designed the interviews and focus groups to explore in greater depth the themes covered in the household survey, among which included health, livelihood, community, and safety. As an example of how qualitative data helped to explain results in the quantitative phase, consider the following finding: though disabled households reported with higher frequency than nondisabled households to have stopped welcoming visitors
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or strangers, they did not report distinct frequencies of communal eating or restricted movement (per public health advice). In areas of lower exposure, disabled households reported lower frequencies of restricted movement. This suggests a complicated impact of the Ebola crisis on behaviors related to social life and contact with others. Qualitative findings help to explain these patterns. Specifically, qualitative data indicate the importance of street begging to at least some people with disabilities to supplement income or pay for unexpected healthcare expenses; those who rely less on street begging may have accepted a greater reliance on communal activities in order to adhere to guidelines for restricted movement.
5.2
Using Qualitative Methods to Select Measures for Quantitative Validation
Betancourt et al. (2011) were interested in the mental health aspects of compound adversity, which could include the combination of exposure to violence and loss of a caregiver due to HIV. Such instances were widespread in Rwanda, where the authors participated in an ongoing collaborative research project to inform the development of an assessment framework for mental-health aspects of compound adversity and effective local interventions. They assert that, given the cultural setting of the study population in sub-Saharan Africa, “researchers cannot assume that simple forward and back translations of [standard mental health assessments based on Western diagnostic systems] have cultural validity and generalizability” (p. 2). This motivated the study’s initial approach, which was to apply the qualitative methodology to identify indicators of mental health problems that are relevant to the local culture. Qualitative data were obtained from interviews of 10–17-year-old children and their caregivers, supplemented by data from additional focus groups composed of HIV-affected family members and analyzed using thematic content analysis. Six mental health problems and five protective processes were identified from the qualitative analysis. Each problem or process subsequently guided a search for extant, promising standard measures for assessment of the associated mental health syndrome. The measures were then translated to and validated within the cultural context, and assessed in a full quantitative validity study, implemented as a survey of Rwandan children thought or thought not to have at least one of the local health syndromes. Results of the quantitative analyses assisted in setting thresholds for clinical measurement of mental health. The authors wrote, “findings on important local constructs such as family unity (kwizerana), good parenting (uburere bwiza), and social support (ubufasha abaturage batanga) provided evidence on modifiable protective resources that may be leveraged by interventions” (p. 8). Guided by these results, the authors focused attention on family-based interventions that reinforce parent–child relationships and ultimately elected to develop a local intervention by adapting an existing Western intervention, known as the Family-Based Preventive Intervention (FBPI).
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The various phases of the study are integrated into their support for a common research goal and in data collection, wherein qualitative results define the variables and instruments applied in the quantitative validation study. In addition, the authors apply participatory and community-based practices through regular consultation with community advisors and local psychologists.
5.3
Participatory Research
Bodini and Gentilini (2020) and Skinner and Masuda (2013) offer two examples of MMR studies that are carried out using a variety of participatory research. Both study health inequities within an urban setting and make use of geographical mapping tools in their quantitative phases. Bodini and Gentilini (2020, p.108) offer an example of participatory action research (PAR) (Estabrooks et al. 2018), an approach that strives to move beyond describing a situation, to the production of “analytical tools that could inform action.” It emphasizes the active involvement of multiple stakeholders in a research project, and takes on a dynamic of “repeated cycles of action and reflection.” PAR also resonates with “implementation science,” (p. 94) a research framework emphasizing the integration of research and practice, and can involve the formulation of a “theory of change,” which would identify a causal pathway from interventions to outcomes. The authors’ particular study centers on health inequities in the city of Bologna, Italy. Its initial step was the creation of an “interdisciplinary, interprofessional, and interinstitutional working group,” whose members designed the study to document health inequities and associated local determinants using MMR, among other goals. The authors note a diversity of roles among members of the working group, intertwined with corresponding differences in professional practices and philosophical positions, which sometimes led to delays. The study valued the participation of multiple stakeholders, including local policymakers and residents; with transformative underpinnings, it paid careful attention to power differentials among the stakeholders involved, and their influence on the decisions that were made. At the time that Bodini and Gentilini’s (2020) report was published, the study had only proceeded through its initial quantitative phase, which involved the mapping of health inequities across 90 statistical areas of the city over a 4-year period. Data were compiled from existing local databases on 12 health indicators in two groups, covering health outcomes and use-intensity of public healthcare services. Among the results of this analysis is the finding of statistically significant differences in health indicators across a geographical configuration that mirrors the distribution of wealth and deprivation. These and other interim results were presented to relevant local authorities and provided motivation for launching the project’s second phase of qualitative data collection that would illuminate the local determinants of inequity. The authors note that funding has been secured to launch this second phase.
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Skinner and Masuda (2013) describe a rights-based study of urban health inequities in the city of Winnipeg, Canada, guided by such concepts as a right to the city (Lefebvre 1996), a right to health, and a right to a healthy city. The authors express a general goal for health geographers to “generate and support explanations for how spatial manifestations of health inequity represent infringements on the right to a healthy city, and in so doing provide guidance for more specific legal and moral action on urban space” (p. 211). They assert that the right to a healthy city is contingent on physical and social mobility within the city. To implement the study, the authors formed a partnership with members of an arts programming and advisory group that had been organized around the Aboriginal youth and consisted of youth between 13 and 20 years of age. The study proceeded as youth-led PAR, a form of community-based research (see ECIPPRG 2006). Such collaboration provided opportunities to “draw out the interconnectedness of people, place, and health” and “build relationships that allow non-academic research participants to take an active role in the production and speak from the margins” (p. 212). The authors additionally note that young people are often more adept at articulating ideas through artistic expressions, such as through visual and performing arts, than through, e.g., traditional qualitative interviews and focus groups. Much of the data generated in the study is thus in the form of paintings, photographs, poetry, hip-hop, and dance choreography, among other artistic modes. The study’s first phase involved a collaborative place-mapping technique that elicited knowledge of physical city-space characteristics, discussions of social boundaries and borders, and their connection to health. The technique offered data on constraints placed on youth mobilities but was limited in its less-than-full privileging of the youth co-researchers’ preferred modes of expression. In the second phase of the study, the youth were paired with and mentored by local artists in the creation of art that translated personal experiences of the city’s spaces, mapped in the first phase, so as to shed light on their encounters with “hidden geographies of exclusion within and across the city” (p. 213). Additional data collected throughout the study included youth journal entries, transcripts from group discussions, and one-on-one interviews between youth and the authors. Analysis of these data made use of qualitative techniques for coding, cataloging, and identifying themes. Integration was guided by a triangulation strategy, which, among other benefits, provided opportunities to check for consistency between the authors’ interpretations and the youth co-researchers’ perspectives. Among the results of the study are findings that convey complex relationships between health and a powerful sense of place, at multiple geographic scales. Major themes that emerged from the study are categorized into constraints to mobility within and outside of neighborhoods, any of which diminish the positive health opportunities of Aboriginal youth. Specific findings highlight the normalization of neighborhood eyesores that manifests when individuals adjust routes and routines to avoid them, fear and resilience in the face of social threats, psychological constraints to movement due to surveillance, outsiders’ expressions of stereotypes and labels toward Aboriginal youth, fear of being a target in unfamiliar spaces, and the influence of city-wide discourses that maintain exclusion along ethnic and racial lines.
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Conclusions and Future Directions
The shifting of global public health to a social model coincides with an imperative for researchers to seek a deep and nuanced understanding of multifaceted phenomena, through a lens that does not obfuscate the ethical and justice-oriented dimensions of health. This chapter holds up MMR as a promising methodological tool – one that looks beyond quantitative analysis acknowledges the political context of research and invites up-close inquiry – that aligns with the goals of this imperative. While its current prevalence of use in public health research may appear soft, the number of published MMR studies is growing. Researchers who apply MMR enrich inquiry by considering their own ethical values and philosophical assumptions as part of their mental model, all of which are acknowledged to affect decisions made during the inquiry. Aware of the closeness at which an inquirer comes to research participants and to the phenomenon being studied, MMR researchers also consider their social positions (e.g., intersecting identities) relative to the research setting, engaging in reflective practices during the process of inquiry. Paralleling twenty-first-century global public health’s deemphasis on rationalistic or scientific approaches, MMR considerations around mental models and positionality deemphasize concepts of objective reality and natural laws in favor of an intersubjective conception of social phenomena. MMR reflects the diversity of public health phenomena by welcoming the contributions of a diversity of methods, as well as the voices of those participating in a research study. To understand the connections and complexity of knowledge elicited by such an approach, MMR researchers carefully attend to the compatibility of paradigms that underlie the methods applied, the integration of methods across stages of the research process, and the diversity of skill specializations among research participants. A variety of integration practices have been developed for use in specific points of a study, or for broader use in guiding research design. The case studies described in Sect. 5 illustrate some ways these ideas may play out in research. The Ebola study of Sect. 5.1 illustrates how quantitative and qualitative data may coordinate such that the latter helps to explain patterns seen in the former. The compound adversity study of Sect. 5.2 illustrates how results obtained in the qualitative phase of a study intrinsically shape a later quantitative phase. The participatory research studies of Sect. 5.3 offer examples of complex integration challenges and opportunities arising from ambitions to include multiple stakeholders in the research and to center the voices of marginalized groups. Each involves the creation of and close collaboration with a steering group, whose deliberations highlight power differentials among its members, and guide the study in crucial ways. Each also illustrates how an MMR study may be guided by social theories, and how pragmatic, value-centered concerns and transformative aims can serve as a focal point of integration. In the Winnipeg health inequity study, for instance, the authors’ willingness to accede to the youth co-researchers’ preferred modes of expression, and encouragement of them, offers a profound example of reflexive practice.
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MMR may be applied in even larger and more complex studies than those anchored in this chapter. For two examples, the interested reader may benefit from examining the study protocols described in Skylstad et al. (2021) and Trushna et al. (2020). Omitting details, the former aims to understand the prevalence of alcohol and substance use in Mbale, Uganda, among 6–13-year-old children. Skylstad et al. coordinate four sub-studies, devised as quantitative surveys and mixed-methods investigations, and qualitative studies, covering such realms as households, health systems, and schools. Trushna et al. present a planned participatory communitybased study of the practice of crop residue burning in the Madhya Pradesh province of India. This study is to be guided by a steering committee in the coordination of data on the geographic prevalence of the practice, ambient air quality, health indicators, and the perspectives of stakeholders as it furthermore seeks to identify barriers and opportunities for the establishment of alternative agricultural practices. These studies are valuable for demonstrating how MMR can scale up to deepen investigations of study complex health phenomena, such as the Covid-19 pandemic while attending to the social perspectives and ethical imperatives of the new public health.
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Part V Research Methods, Social Sciences, and Global Health
Digital Health Research Methods and Global Public Health Rayner K. J. Tan, Pearlyn H. M. Neo, Jane M. Lim, and Suan Ee Ong
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Digitally Mediated Realities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Digital Health Research Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Internet and Social Media . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Wearables and Personal Devices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Data Records and Management . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Benefits of Digital Research Methods for Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Bridging the Digital Divide and Other Regulatory Hurdles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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R. K. J. Tan (*) University of North Carolina Project-China, Guangzhou, China Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore e-mail: [email protected] P. H. M. Neo Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore e-mail: [email protected] J. M. Lim Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, Singapore, Singapore e-mail: [email protected] S. E. Ong Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore, Singapore Research for Impact, Singapore, Singapore e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_54
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Abstract
The advent of technology has brought about new opportunities and interfaces to generate insights into individuals’ and societies’ social worlds and lived experiences. This chapter highlights broad trends in technological innovations and the concomitant rise of digital research methods. First, it explores the mediating role of technology in both accessing the social lives of individuals and understanding realities where novel interactions are easily generated. Second, it highlights how the advent of different technologies, including the internet and social media, personal handheld devices and wearables, as well as big data sources have led to a broadening and deepening of digital research methods. Third, it discusses the benefits of these approaches in the context of global public health. Finally, the chapter discusses several issues relating to the digital divide that must be addressed to realize the potential of digital research methods in furthering efforts to improve global public health. Keywords
Virtual research methods · Digital research methods · Digitization · Digital health · Methodological innovation
1
Introduction
The field of global health has gained prominence in the past few decades and has been derived from public and international health efforts that are historically rooted in colonial and tropical medicine (Koplan et al. 2009). Global health is set apart from its precedent concepts of “public health” and “international health” in multiple ways. To this end, scholars have argued for a common definition of global health to chart the way forward toward common interests for governments, global health practitioners, and researchers (Koplan et al. 2009; Taylor 2018). Key aspects of global health identified include addressing health issues with transnational outcomes or determinants, encompassing more than infectious diseases and maternal health, addressing and interacting with issues of globalization, creating equitable partnerships across countries around the world, and fostering interdisciplinary approaches (Koplan et al. 2009). While such global health efforts aim to address health inequities across the world, its historical roots present a disconnect and an uphill task for researchers in the field. Specifically, scholars have argued that colonial and tropical medicine policies were designed with political and economic exploitation as the ultimate goal, typically by European and North American powers (Hirsch 2021). To address this, global health researchers have sparked movements within the field, calling for decolonization and the upending of power structures that fetter the realization of the global health agenda, and to move away from rhetoric toward actual reform (Khan et al. 2021a). These include the abolition of practices that limit participation by experts and
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communities in low- to middle-income countries, top-down health programming, placing experts from the “Global North” above indigenous or local expertise, limiting resources to high-income settings, and limited representation in research grants (Khan et al. 2021a). Apart from a potential crisis of deepening inequalities, another movement looks toward the strengthening of health systems across the globe. Global health security is defined by the United States Centers for Disease Control and Prevention as the existence of robust public health systems that can prevent, detect, and respond to infectious disease threats around the world (Centers for Disease Control and Prevention 2022). The Global Health Security Agenda (GHSA) was established by more than 70 countries, international organizations, and nongovernment organizations and private sector companies that aim to leverage partnerships to address priorities and gaps in response to infectious disease threats (Global Health Security Agenda 2022). Nevertheless, scholars have also argued that the goals of the GHSA cannot be achieved without addressing disadvantages and health inequalities at the local and global level, as such efforts are inextricably linked (Quinn and Kumar 2014). How then are digital research methods connected to such movements in global health? Digital approaches in research and health are often viewed as a double-edged sword. On one hand, they threaten to create further inequalities in health due to existing digital divides within and across countries, and on the other, the ability to reach individuals who may not have been traditionally reached through conventional healthcare facilities, and efforts hold promise for greater diversity and representation in our health systems (World Health Organization 2021). Digital research methods, such as the use of digital technology to decentralize research processes, digital crowdsourcing methods, or digital qualitative methods have shown promise in enhancing representations of participants and equity of outcomes, diversity of participation in the generation and development of research processes and intervention design, and enhancing access for participants in clinical trial studies (Tan et al. 2022). It is time that public health researchers discuss the implications of digital research methods as rapid digitalization takes place across the globe in all areas of life. Digitalization is defined in the field of business as the use of digital technologies to change a business model and provide new revenue and value-producing opportunities and the process of moving to a digital business (Gartner 2022). This can also be applied to areas of health and health systems, where both digitalization and digitization, or the conversion of analogue and written data into digital ones, is rapidly taking place (The Lancet 2021). Furthermore, it is essential to also focus on the role of digital methods in global health in the wake of the Coronavirus Disease 2019 (COVID-19) pandemic, which has accelerated the shift toward the use of digital research methods due to initial lockdowns and movement control measures, and ongoing remote working arrangements that may persist beyond the initial years of the pandemic. In this respect, this chapter focuses largely on digital research methods that may contribute to the advancement of the field of global health, especially through
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movements such as decolonizing global health, as well as contributing toward global health security. This narrative review highlights how digital research methods have promise in ensuring greater participatory and bottom-up approaches that align with the goals of decolonization movements in global health, as well as the ability to ensure that health systems and health research remain resilient to emerging infectious diseases and threats or shocks to the health system. To do so, the chapter first highlights how digitalization and digitization have led to a shift in the materiality of data, and how researchers can measure them. Next, it discusses how several digital innovations, such as the advent of the internet and social media, wearables and personal devices, and digitization of large-scale data have implications for global health. Finally, the chapter discusses the benefits of such processes and potential pitfalls that may arise due to the digital divide and other privacy or regulatory issues.
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Digitally Mediated Realities
The advent of digital technology and information and communication technologies (ICTs) have expanded the ontological bases of human experience. In turn, researchers now have data points that they can access through both offline and digital methods. This section briefly discusses how digitalization has first led to the development of digitally mediated worlds and realities (i.e., a digital society) that not only augment individuals’ everyday “real-word” experiences but also reshape human perception. Second, digitalization has also created new, accessible data points that allow people to consider how big data approaches or just-in-time interventions can be employed. And last, that digitalization has provided people with the opportunity to engage individuals who were previously poorly served by traditional, in-person services or research. First, the availability of ICTs has not only digitalized many of the individual’s real-world processes (i.e., migrated people’s typically real-word or offline interactions into digital spaces) but also created new platforms where people can socialize and interact. These are often described as digitally mediated realities or worlds that have resulted from a digital shift or revolution, where the self is also mediated and recreated, and therefore, reshaping social interactions, identities, and even social mores (Langlois 2018). The invention and proliferation of ICTs have also constructed and (re)arranged digital spaces, which have become integral parts of people’s lives, offering both an augmentation of people’s lived experiences, as well as a new reality that is significantly different from offline one’s (Levin and Mamlok 2021). Floridi (2015) also discusses how the pervasiveness of such ICTs has had four transformations in the human condition. First, the blurring of the distinction between reality and virtuality; second, the blurring of the distinctions between human, machine, and nature; third, the reversal from information scarcity to information
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abundance; and fourth, the shift from the primacy of entities to the primacy of interactions. These transformations have in turn shaped how human beings perceive and understand their surrounding realities. In this sense, the digital revolution has not only provided new opportunities to develop tools that explore how people perceive the world, but also a glimpse into mediated realities that have been shaped by such forms of digitalization. Overall, researchers have pointed out how their methods of conducting research have not only expanded as a result of the development and proliferation of the internet (Bainbridge 1999; Palys and Atchison 2012) but also how to offer new methods of gaining insight into aspects of human behavior and nature (Marsch 2021). These digitally mediated worlds, realities, and perceptions have major implications for qualitative research today. Second, apart from creating new mediated platforms and realities, the digitalization of everyday life has led to the development of novel data points that were not accessible before the digital age. These include data reflecting a continuum of personal content, with the lowest levels embedded in business-to-business data (e.g., financial, and human resources), followed by business-to-consumer data (e.g., media, consumer data, services data), then government-to-citizen data (e.g., health and tax services, internet of things data), and the highest level of personal content embedded in citizen-to-citizen data (e.g., social media, communications) (OECD 2019). These varying levels of data also have implications for how we can better understand human behaviors and attributes not only at a wider scale and population-level through big data approaches (Bergier et al. 2021), but also in a timely fashion through precision just-in-time responses (Hardeman et al. 2019). Last, technological advancements are allowing researchers to reach, understand, and provide better care to hard-to-reach populations that were previously less accessible or underserved. For example, collecting maternal health data from women in rural villages on tablets that directly upload data to the cloud (Dickinson et al. 2019), or engaging stigmatized populations in urban settings who may face issues accessing traditional services and facilities out of fear and discrimination (Tan et al. 2022). Such digital approaches, therefore, allow researchers to expand not only the breadth and depth of research but also coverage of their efforts to understand the world. These novel pathways offer new methods and opportunities to spur community engagement, better engage the underserved, and bridge inequities in global health.
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Digital Health Research Methods
This section describes the various virtual research methods available to researchers today because of this digital revolution. Reviewing the literature around digital research methods, the authors opted to approach detailing these methods through the lens of various ICTs and platforms, including the internet and social media, wearables and personal devices, as well as data records and management. This allowed them to address emerging approaches and methods that have gained prominence across these platforms.
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Internet and Social Media
This subsection will discuss how the internet and social media have created new opportunities for the digitization of traditional research methods, as well as the conceptualization of novel methods only available through these platforms. Researchers like Bainbridge (1999, p. 664) anticipated that the “Internet will become the primary environment” where researchers would perform scientific research. Bainbridge (1999, p. 664) further argued that cyberspace would: . . .provide essentially all of the data used for secondary analysis; it will be the chief laboratory for experimentation; most significant social surveys will be web-based, and integration across methodologies and disciplines will take place chiefly on the net.
Despite certain research processes that remain accessible only through in-person approaches, this prediction has been realized today to a large extent – many significant social surveys have not only become digitized but at the very least stored on the Internet as publicly available datasets across varying fields such as health and business (Khan et al. 2021b; Tableau Software LLC 2022). While many online survey software has been developed by commercial entities for purchase, universities have also developed open-access resources, including software programs that strengthen equity in research by allowing access to individuals from low-resource settings (Centers for Disease Control and Prevention 2020). With Floridi’s (2015) discussion on how ICT has affected the human condition from a place of transformation and reversal, and from information scarcity to information abundance, the Internet and social media have allowed researchers to gain access to an unprecedented amount of data, and many research methods have also been developed to make sense of them. First, natural language processing is a form of artificial intelligence utilizing computational algorithms to understand and produce human language content (Hirschberg and Manning 2015). This has allowed researchers to meaningfully explore and scrape large amounts of data through methods such as named entity recognition to identify named entities like persons and organizations (Sharma et al. 2022), sentiment analysis to measure feelings expressed in a written text (Kirilenko et al. 2022), and speech recognition to convert human sound signals into words or instructions (Malik et al. 2021). The ability to interact through the internet as well as social media has also created new possibilities for qualitative research premised on understanding the narratives of individuals, how individuals interact with one another, as well as how communities operate in such spaces (Liamputtong 2020). This has led to both the digitization of traditional qualitative research methods, as well as the introduction of new ones that were not available to researchers before the Internet age. Conventional qualitative methods used in global public health include, for example, in-depth interviews, focus group discussions, participatory research methods, as well as participant observation or other ethnographic methods (Denzin and Lincoln 2011; Liamputtong 2020).
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Examples of digitization around the conduct of in-depth interviews include data collection through telephone or text messaging (Gubrium and Holstein 2002) and videoconferencing software (Janghorban et al. 2014). Focus groups have also shifted online, beginning with emails, online forums and message boards (Stewart and Williams 2005), and later, virtual discussion rooms (Brüggen and Willems 2009). With the arrival of smartphones as well as the use of chat and messaging social media applications, scholars have also used teleconferencing software and chat apps such as WhatsApp to conduct both asynchronous and synchronous focus group discussions, which have further democratized research processes, and allowing the participants to take the reign over from facilitators and shift the entire conversation (Chen and Neo 2019; Neo et al. 2022). Traditional participant observation methods have also evolved toward digital spaces through “netnography” or cyberethnographic methods (Kozinets 2010), as well as participant-led methods like photovoice, which provide promising advances in social methodology and inquiry (Good 2001; Wang and Burris 1997; Liamputtong 2020). Beyond serving as a medium for the generation or collection of data, the Internet and social media also serve as platforms for collaborative research processes that lead to important developments in health interventions and the engagement of community members. Digital crowdsourcing is an example of this. Crowdsourcing typically involves groups of individuals contributing toward solving a problem and identifying solutions that would be shared with key stakeholders (Tucker et al. 2019). These have been useful in developing intervention material as well as getting public input on research processes (Tang et al. 2019; Wu et al. 2019). Another example of research processes that have taken place online includes the implementation of digital interventions. These have taken place over social media platforms and online forums, leveraging the social nature of such media to implement such interventions (Ko et al. 2013; Lepore et al. 2011; Yang et al. 2021).
3.2
Wearables and Personal Devices
Wearable devices or gadgets, in general, are devices worn by consumers to capture biometric information (Nanjappan et al. 2017). Scholars have also classified these devices based on requirement and usage; there are wrist-worn devices that include smartwatches and wristbands, head-mounted devices such as smart eyewear and headsets, ornaments such as smart jewelry, e-textiles such as smart garments, e-patches including sensor patches, as well as sports and fitness devices such as smart wearable sensors and bracelets. These devices have helped us advance research methods in two aspects: first, by gaining insight into real-time, contextspecific, and personalized measures of health and bodily functions; and second, by serving as a means of decentralizing clinical trial studies. Wearable devices and the use of smart personal devices have allowed us to conduct research that assesses time-specific and context-specific factors. Such methods include ecological momentary assessments, which repeatedly sample
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research participants’ behaviors and experiences in real time, in the contexts or environments where such measures are being collected (Shiffman et al. 2008). These help researchers mitigate risks of recall bias based on self-reported, retrospective data that may be collected during clinic visits. It also maximizes ecological validity and offers us deeper insight into micro-processes that influence behavior in realworld settings (Shiffman et al. 2008). These have included the use of smartphones and accelerometers for collecting physical activity behaviors (Zapata-Lamana et al. 2020), as well as a variety of devices to collect timely questionnaire-based data such as wrist-worn electronic diaries, palm devices, and smartphones for the assessment of dietary data (Maugeri and Barchitta 2019), suicidal thoughts and behaviors (Sedano-Capdevila et al. 2021), and depression-related phenomena (Armey et al. 2015). It is also worth noting that while these approaches have been useful in collecting real-world data, these approaches also allow for just-in-time and realtime interventions as well, allowing researchers to intervene for participants and patients when they are deemed to be in high-risk situations (Balaskas et al. 2021). These wearable devices have allowed researchers to capture data from digital interventions, including objective data on behavior or biological measurements. These help with the decentralization of clinical trial processes and reduce barriers to participation due to accessibility issues. An example is a randomized trial evaluating a mobile phone application detecting potential arrhythmias enrolled more than 400,000 participants, who were not required to attend a clinic to provide such measurements. Furthermore, the use of wearables like activity trackers and smartwatches has shown promise in the fight against COVID-19 by allowing for early detection of asymptomatic or presymptomatic disease (Ates et al. 2021).
3.3
Data Records and Management
Finally, the digital revolution has brought about the widescale digitization of data. Such digitization has allowed researchers to develop and maintain massive population-based electronic health records, digitization of personal genomes, as well as other data banks in the physiological and molecular data (Snyder and Zhou 2019). This subsection will describe how electronic health records have developed over the past decades and created opportunities for digital research methods and approaches, as well as the benefits of big data, approaches for precision health and medicine, modeling of health policies, as well as machine learning approaches. Electronic health records typically represent longitudinal datasets of individual patient data that are collected as part of routine healthcare. These often primarily contain basic administrative and demographic information about a patient, as well as vital statistics, claims data, and patient-centered clinical data (Cowie et al. 2017). Precision health assesses one’s risk for a disease at an individual level, intending to detect early preclinical conditions and initiate preventive strategies (SchüsslerFiorenza Rose et al. 2019). Concomitant with the advancement of precision medicine is our understanding of big data, a concept referring not only to the rapid
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increase in volume, variety, and velocity of information available, but also our increasing ability to analyze, interpret, and contextualize those data (Hulsen et al. 2019). Big data, with its ability to link together diverse biological, behavioral, and even genomic datasets, can reveal potentially novel relationships and pathways between what may seem like disparate risk factors and health variables of interest; allowing for even greater precision than before (Dolley 2018; Schaefer et al. 2019). The increasing use of big data has also allowed for the real-time modeling of health issues and lends itself to analyses by machine learning methods. This then has major implications for ensuring that healthcare policies are evidence-based and cost-effective, and also serves to create an environment where emerging public health threats can be mapped out and observed in real-time, enabling situational, evidence-based policymaking. This was exemplified during the COVID-19 pandemic, as big data analytics were used to study phenomenon such as human mobility, impacts of lockdown policies, as well as healthcare system utilization changes over the course of the pandemic. How are big data defined? Big data typically refers to the evolution of the science of data management and analysis to enable organizations to convert large volumes of digitally collected and stored data into information and knowledge that can help them achieve their objectives (Murdoch and Detsky 2013). Big data has also been commonly defined through the concepts of volume (scale or quantity of data), velocity (speed and analysis of real-time or near-real-time data), and variety (different forms of data, often from disparate data sources). However, other researchers have attempted to expand the nuance around defining big data to include other concepts such as variability, veracity, value, and visualization (Kruse et al. 2016; Sivarajah et al. 2017). Big data and big data analytics have come to the forefront due to the COVID-19 pandemic. Due to the role of big data analytics in spurring evidence-based policymaking in the pandemic, there is now increased awareness and focus on the possibility of predicting, mapping, tracking, monitoring, and raising awareness about epidemics and pandemics and other black swan events using big data analytics (Nageshwaran et al. 2021; Sheng et al. 2021). For example, during the COVID-19 pandemic, big data were used to study human mobility and the impacts of lockdown policies (Hu et al. 2021), as well as relationships between media and public attitudes around face mask wearing (Suh et al. 2021). Big data approaches utilizing multicountry data and social media data have also provided insight into healthcare utilization changes during the pandemic (Tu et al. 2022). Overall, researchers are learning new ways and refining the tools in big data to offer greater insights into the study of epidemiology (Tang et al. 2021). There are also broader opportunities of big data use in health, which include improving the quality and efficiency of care, the ability to manage population health, and to detect diseases early (and therefore improved treatments and higher patient outcomes), more robust data quality, structure, and accessibility through the conversion of data into meaningful, and effective forms, improved decision-making in public health, cost reductions, as well as better patient-centric care (Kruse et al. 2016).
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Benefits of Digital Research Methods for Global Public Health
Earlier on in this article, the chapter described several goals of the global public health agenda, including decolonizing global public health, as well as strengthening global health security. The authors argue that digital research methods, through their potential to deepen engagement with vulnerable communities, as well as the ability to deepen researchers’ approaches to the understanding of health, can contribute to both agendas effectively. Digital research methods can help contribute to global public health’s goals of empowering communities and addressing gaps in research. Such digital approaches highlighted above help to ensure greater diversity of participants in research through multiple mechanisms. First, through decentralizing research processes and recruiting participants remotely through digital approaches, research teams are now able to reach individuals who are underserved by in-person research activities. Specifically, this would include socioeconomically vulnerable individuals and people with disabilities who may face difficulties traveling to research or clinic sites, as well as individuals who may face stigma and discrimination and therefore cannot attend such in-person activities out of fear of exposure (Inan et al. 2020; Lijadi and van Schalkwyk 2015; Sik 2020). Second, digital approaches not only allow researchers to reach underserved and vulnerable populations but also potentially deepen levels of engagement, allowing for cocreation processes and shared leadership in research. For example, digital qualitative approaches such as the use of chat-based apps have allowed for a democratization of chat-based focus group discussion processes, given that participants can share information in any format they wish to over chat, and at any time they wished to (especially if mobile data or bandwidth considerations are of concern), for asynchronous conversations (Neo et al. 2022). Digital crowdsourcing approaches also provide opportunities for research participants and especially members of vulnerable communities to participate in the development of clinical trial interventions (Tang et al. 2016). Digital research methods can help to contribute to the global health security agenda by furthering researchers’ understanding of population health and ensuring that health research frameworks remain resilient even in emergency or pandemic situations. As discussed earlier, digital research methods that make sense of the abundance of online data over the Internet and social media provide new ways of understanding human behavior (Marsch 2021). The advent of wearable and smart personal devices allows for a further expansion of human-centered data points that are now made available to researchers, not just in terms of biomarkers, behaviors or physical space, and context, but in terms of time as well. These allow researchers to take precision health to the next level and ensure that interventions are just-in-time and prevent or mitigate risks promptly (Balaskas et al. 2021; Hardeman et al. 2019). The broad digitization of data and research processes have also made big data and artificial intelligence approaches in health possible, allowing for an even deeper understanding of health risks and wellbeing at the population level.
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Digital research also enables researchers to consider broad, collaborative, open science approaches in organizing interdisciplinary and international research, which can help strengthen global health efforts. Such open science approaches are becoming more popular in recent times, and are characterized by collaborative sharing of data, leveraging open-access software, as well as prioritizing open access outputs (Tse et al. 2020). The United Nations Educational, Scientific and Cultural Organization (UNESCO) defines open science as being built on five key pillars: (1) open scientific knowledge, (2) open science infrastructures, (3) science communication, (4) open engagement of societal actors and (5) open dialogue with other knowledge systems (UNESCO 2021). These have led to collaborative projects around open sources of drug discoveries in the Malaria research (Williamson et al. 2016), open research for drugs targeted at neglected tropical diseases like Eumycetoma (Lim et al. 2018), international multi-country social and behavioral surveys (Erausquin et al. 2022), as well as for COVID-19-related scientific advancements (Tse et al. 2020).
5
Bridging the Digital Divide and Other Regulatory Hurdles
It is not possible to discuss digital research methods without also acknowledging that access to digital solutions is also inequitably distributed, both internationally and even within local contexts. Digital access has, because of these digitalization processes, become a social and structural determinant of health. Studies conducted during the COVID-19 pandemic have shown that while rapid developments were made to ensure health services could carry on through digital approaches (Beaunoyer et al. 2020), already disadvantaged groups tended to experience significant disparities in broadband internet access or mobile data, therefore further exacerbating any preexisting health disparities (Eruchalu et al. 2021). In general, disparities in digital access may lead to biased sampling that may miss out on the most vulnerable participants who are already underserved by health systems or existing research channels, such as older people, people with disabilities, or financially vulnerable individuals (Makri 2019). Tan et al. (2022) provide several suggestions (see Table 1) on how researchers who intend to use digital methods of engaging participants can help bridge such gaps at a local level. Big data poses several challenges, both in terms of ensuring its effectiveness, as well as in ethical issues that arise. In the former, issues of data structure, data standardization, storage and transfers, and data governance pose challenges to its implementation (Kruse et al. 2016). With regard to ethics, it should also be noted that there are several ethical issues that Schaefer et al. (2019) have raised around the use of big data in precision health. First, there remain questions around who essentially benefits from such approaches, given demographic gaps in existing health and genomic datasets. There may be opportunity costs associated with the pursuit of precision health and medicine, especially when thinking of shifting resources and
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Table 1 Recommendations to enhance digital inclusion Socioecological model level Individual Interpersonal
Considerations for digital inclusion Ability to access and navigate digital worlds Digital connections with interpersonal support systems
Organizational
Availability of organizational support structures to facilitate digital inclusion
Community
Community-based norms and practices around digital environments Policies around data security, bandwidth access, government support for digital inclusion
Policy and institutional
Recommendations Ensuring that engagement methods are person-centered Ensuring that digital interpersonal engagement strategies are sensitive to existing digitally mediated interactions Ensuring that sufficient organizational capacity is available for digital engagement strategies, including hybrid models of engagement and specialized training for research teams Ensuring that digital technologies are sensitive to community norms and ecologies Providing remuneration, hardware, or software that may improve engagement, and being sensitive to local legislation and regulatory frameworks
Adapted from Tan et al. (2022)
funding away from programs that could potentially address traditionally neglected diseases and groups. Second, issues of anonymity are raised in the context of using genomic data and analysis as re-identification of de-identified genomic profiles becomes possible. Third, that big data-driven approaches may have implications for families or groups that are linked through social or cultural constructs and attributes such as race or ethnicity, where findings of such approaches may lead to the reinforcement of racial or ethnic stereotypes. And finally, this may lead to a form of genetic discrimination across areas such as insurance, employment, and healthcare. Another concern that arises from the use of digital research methods is the concept of privacy and confidentiality for participants and patients (Bari and O’Neill 2019). At the basic level, it is important that approaches to ensure data security and participant privacy can prevent the misuse of data and minimize risks of data or security breaches (Myers et al. 2008). However, to bridge inequities in participation, such privacy protections must also be attuned to the heightened vulnerabilities that underserved groups may face because of disparities in digital access. For example, socioeconomically vulnerable individuals may face additional obstacles in negotiating digital privacy and confidentiality due to the intersectional nature of the digital divide and would require specific frameworks to mitigate such privacy risks (Tiffin et al. 2019). Regulations around the use of digital media for the collection of personal information may serve as barriers to engaging in or adopting novel digital research methods (Patel and Butte 2020). Additionally, ethical and regulatory frameworks that govern research practices and protocols may also require further review in light of novel digital research methods, to ensure that research protocols remain aligned with practices that uphold patient privacy and safety (Ferretti et al. 2020; Tiidenberg 2018).
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Conclusion and Future Directions
This chapter has sought to highlight how the digital revolution has brought about a concomitant rise in digital research methods available to researchers, and their relevance to global public health. It discussed the mediating role of technology in both accessing the social lives of individuals and understanding a reality where novel interactions are easily generated, and it highlighted how the advent of different technologies, including the internet and social media, personal handheld devices and wearables, as well as big data sources have led to a broadening and deepening of digital research methods. It not only argues that digital research methods provide benefits in the context of global public health, but also raises several issues relating to the digital divide that needs to be addressed to realize such benefits. The rapid expansion of digital research methods has major implications for research in future pandemics beyond COVID-19. Digital research methods will also be important for engaging communities that may be geographical or digitally isolated. The digital research methods highlighted in this chapter will play a major role in generating important insights around individual and community health during pandemics, especially when in-person approaches may be restricted due to potential lockdowns or movement control measures. Even in the absence of a pandemic, this chapter highlights the importance of digital research methods in engaging individuals and communities that may be geographically or digitally isolated. Nevertheless, it also calls for action on ensuring that such communities have access to robust digital infrastructures and ecosystems, lest we leave them behind as societies and health systems continue to rapidly digitalize. The authors hope that this chapter provides some guidance for future researchers who may be interested in utilizing digital research methods to advance their work in global public health, especially in enhancing community and participant engagement in research, elevating the voices of underserved populations, and deepening their understanding of health risks and well-being of populations. The authors believe that given worldwide disparities in the distribution of digital access and infrastructures (United Nations Conference on Trade and Development 2019), and as individuals engage in deeper digitization of data points and digitalization of everyday processes, greater attention must be accorded to bridging these gaps lest they further exacerbate inequities in global public health.
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Cross-References
▶ Coproducing Online Focus or Consultation Groups for Health and Social Care Research ▶ Digital Storytelling ▶ Mixed Methods Research in Global Public Health ▶ Qualitative Research Inquiry and Global Public Health ▶ Upending Quantitative Methodology for Use in Global Public Health
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Coproducing Online Focus or Consultation Groups for Health and Social Care Research Kim Heyes
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Coproduction and Cocreation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The History of Focus and Consultation Groups in Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Access to Participants and Ethics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Online Focus Groups or Consultation Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
In this chapter, it is argued that the use of coproduction, in particular using online focus or consultation groups, is vital to gain a true understanding of what people want and need from health and social care services, and in empowering communities to advocate for that change. The recent pandemic expedited the move of services and research to online spaces. Understanding how to conduct research online in the most effective way has been challenging. However, online research has proven beneficial, reducing barriers to participation and enabling spaces for meaningful engagement. Although previously there have been arguments that online focus groups were too impersonal and did not facilitate trust between the researcher and the participants, it is now imperative that researchers get this balance right to utilize this tool effectively. Health and social care research should always be coproduced in an equitable partnership between experts by experience and researchers. Online focus groups can be an excellent way of conducting this research, and this chapter explores how to do this, and how to learn from mistakes made along the way.
K. Heyes (*) Manchester Metropolitan University, Manchester, UK e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_55
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Keywords
Online research methods · Focus Groups · Coproduction · Health research · Consultation groups
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Introduction
Focus group research has been a useful method of qualitative research for many years. Its development online has not just been facilitated by recent pandemic lockdowns but has actually been used for around 25 years as a method in its own right. What widespread technology such as Zoom, Teams and Skype, has allowed for during the pandemic is face-to-face interaction that was not a common feature of online focus groups previously. What is novel about this methodology is that it allows the researchers to access individuals that may not attend a focus group physically. Within health research, this can be a large proportion of the required population. Using such technologies, therefore, has given health and social care researchers an opportunity to conduct research differently. Although it has been relatively simple to convert previously planned in-person focus groups to a Zoom call (for example), the method largely remains the same. During the author’s recent research projects, the development of coproduction as a key factor of research methodology has been an important addition. Therefore, while changing existing research plans from in-person to online from March 2020, it seemed an ideal time to develop a method of Coproduced Online Focus or Consultation Groups. The differences between consultation and focus groups will be explored later in the chapter, until then focus groups will be used to describe both of these methods unless specifically stated. Firstly, this chapter will begin with an overview of coproduction in health and social care research. Secondly, the chapter will outline a brief history of online and in-person focus groups and the ethical implications of online research and recruitment. Thirdly, it uses two case study examples to show what happens when coproduced online focus groups go well, and what happens when it does not go well. Finally, this will culminate in a list of suggestions for conducting one’s own research using coproduced online focus groups, not to be used as a checklist, but as a starting point that can be developed as technology develops and the world moves forward post-pandemic.
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Coproduction and Cocreation
The processes of cocreation and coproduction do not just denote specific and clearly defined interventions, but rather a philosophy and approach that shapes interventions across a range of sectors. Coproduction is a term used within research to denote an equitable relationship between members of a research team that includes experts by experience. This is an important distinction from the usual power dynamic present in most research whereby the researcher is in a position of power (Bell and Pahl 2018).
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Coproduced research must have a power balance between the researchers and the experts by experience/coproducers (Durose et al. 2012). The aim is to demystify and open up the world of academic research to people outside of academia. Some prospective coresearchers will not have been to university so may feel as though it is something that is beyond their means. I have been part of research where participants/potential coproducers have believed that they did not have the right level of intelligence because they did not have a degree. Part of being a researcher in this situation is to outline clearly what is expected and reassure them that it is something that they are capable of. Support to teach and upskill the participants that will be coproducers should be built into the research. Experts by experience is a term used when describing people with health issues who have become knowledgeable about their condition/s over time or are well informed about their condition/s (McLaughlin 2009). Within the expert by experience label, researchers can also consider how the wider participation of stakeholders (e.g., parents, counselors) or peer support (e.g., friends) and the use of technology can contribute to the research. Studies on coproduction and cocreation focus on enhancing the capabilities of users in service delivery, through defining experts by experience as people with assets; breaking down barriers between users and professionals; reciprocity and mutuality; working with peer and personal support networks; and helping organizations become agents for change rather than just being service providers. Coproduced research generates possibilities of including typically “hard to reach” participants. These are people with characteristics or diagnoses who have been under-researched and are seen as difficult to recruit for a variety of reasons (Liamputtong 2007, 2020). Coproducing research with people who have lived experience of these characteristics or diagnoses may encourage other people to engage where they would not have previously. Beebejaun et al. (2015) argue that coproduction was developed in response to a call for meaningful engagement, and that true coproduction allows for the participants to be empowered as activists of social change. Critiques of coproduction research posit that some researchers may develop coproduction research as a means to advance their own careers, having little time in their busy academic schedules to consider the true value of such a method. In their desire to conduct meaningful (and potentially career-defining) research, they may view experts by experience as belonging to vulnerable communities, adhering to the adage of “minimizing harm” rather than allowing them the autonomy to be fully empowered coresearchers (Beebejaun et al. 2015:553). Case Study 2 in this chapter explores this concept and how despite our best intentions, researchers can still be guilty of trying to protect participants instead of giving them a choice.
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The History of Focus and Consultation Groups in Research
Health and well-being are embedded within societal attitudes and it is important to understand what is happening in society as a whole in order to support communities and improve health at an individual level (Heyes et al. 2020). Health and social care
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researchers often focus on interpersonal dynamics and social networks, which highlights the issues of understanding what is happening within social, political, and environmental contexts as well as the presenting ailments. There are many arguments around social inequalities linked to ill health and these should be taken into consideration when constructing arguments around causation (McGrath et al. 2016; Pickett and Wilkinson 2010; Wilkinson and Pickett 2009; Wacquant 2008; Marmot 2004). Focus groups are a way of entering these community spaces, speaking to the people with lived experience, and understanding perspectives on the matters that are impacting their lives, either individually or as a group. One thing that most health and social care researchers agree on is that ill health in the main (there may be exceptions) is not a cause or necessarily a symptom but can be or include a complex mixture of social and psychological issues that are uniquely experienced. Researchers have utilized focus and consultation groups as a useful way of gaining rich qualitative data from multiple people in a relatively short timeframe. Focus groups are usually conducted after ethical approval has been granted and participants sign consent forms so that the data becomes fully useable by the researchers unless the individual withdraws consent. These methods of group discussion are widely credited to sociologist Robert Merton in 1956. He made suggestions on how to conduct research effectively using focus groups. The method then became widely used in many other disciplines, evolving into multiple formats within health and social care. In-person focus groups gained traction in the 2000s as qualitative data became more widely accepted, renowned for adding contextual understanding where quantitative data could not. Focus groups have been used in a variety of contexts such as strategic planning, health promotion, policy creation, and program evaluation (Hennink 2007; Liamputtong 2011, 2020). Planning focus groups usually involves background research of the topic to be discussed, and questions are constructed in advance to facilitate discussion. Participants are recruited in various ways, but typically an advertisement is posted in a space where people with a specific issue may be found, for example, in a hospital or GP surgery. More recently, these would also be through targeted emails or adverts posted in online spaces such as surgery websites or Facebook pages. Depending on the number of expected participants, the focus groups usually take place in a setting that is easy for the participants to access near to the place that they access for their health and social care needs. They should have been given an information form about the research in advance and asked to sign to consent to their discussion being used for analysis. Sim and Waterfield (2019) state that consent is based on the autonomy of the participant; however, this can be problematic, as issues or disclosures could arise during a focus group that is not foreseen by the researchers. This could have unexpected outcomes for the participants that would not have been covered by the information given, and they may feel as though the conversation has taken a path that they are no longer comfortable with. This is, of course, a much larger discussion, but one that will be returned to later in this chapter. Ethics and consent are vital for the protection of the participants and researchers, so it is important that this is given a great deal of thought.
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Practically, focus groups are usually conducted by at least two researchers who take on the role of facilitator, asking the predetermined questions and probing questions where necessary, and a note-taker (Liamputtong 2011). There may be other research team members involved as assistants within this process, depending on how many participants are taking part and how long the focus group is expected to take. The number of participants for focus groups can be difficult to determine, but many researchers determine that between around five to ten people is adequate (Hennink 2007). The interaction between the participants is what determines the outcomes, so it is important that there are enough people to voice their opinions, but not too many that some people are unable to have a voice. Giving a voice to health and social care service users is vital when creating or updating services, and a researcher is responsible for ensuring that this voice is heard authentically. Online focus groups developed in the very early stages of the internet becoming widely available. As early as 1995, researchers were using forums to ask questions asynchronously (participants reply in their own time or via email) (Baym 1995). Asynchronous focus group research continues to be popular, particularly within Facebook or Reddit forums, for example. The conversation is tricky within these forums, and research the author conducted in 2015 found that many people would answer the question, but not interact with others who were also answering, despite her probing to try and elicit further conversation (Heyes 2016). The benefits to this type of research include being able to access a broader range of participants in many geographical locations (access and language are still a barrier to some, however), it is inexpensive to conduct, only one researcher is needed to facilitate and collect the data, and it can take less time overall than face-to-face focus groups or online synchronous focus groups. Synchronous focus groups are set up in specific online spaces such as a chat room or WhatsApp group, where questions will be posed over a set period of time (usually 1 hour) and participants respond in real time. The facilitator will type in a question and the participants will respond. Typing speed can hinder some responses, but generally, a discussion can be similar to face-to-face, albeit using shorter sentences that are usually more to the point. Abrams and Gaiser (2017) posited that part of the value of conducting focus groups is the interaction of the participants. The building of the conversation can create a shared experience, eliciting information that may only come forth after hearing the opinions and stories of other participants. A sense of community is created by a shared identity (Ren et al. 2012). Online spaces have become an intrinsic part of everyday life for some (Morrow et al. 2015), with the number of worldwide users reaching 5.4 billion in 2022, approximately 42% of the world’s population (Internet Live Stats 2022: online). Many people around the world now access forums and social media on a daily basis and the normal way of interacting within these spaces is by commenting asynchronously (Abrams and Gaiser 2017). Therefore, it is perfectly reasonable to ascertain that asynchronous focus groups are still a great option for conducting valuable and insightful research.
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As humans adapt to technology, it is pertinent to find ways to gather information in a way that is comfortable and familiar. Although some have been using online forums for many years, it is only in the last decade that the majority of internet users have become familiar with interacting regularly in this way. Innovation of digital services is the forefront of global health and social care currently, and there will be many transformations of service offerings over the upcoming years. Enabling a successful transformation that is right for everyone is a difficult task. As has been seen during the initial stages of the Covid-19 pandemic, technology can transform people’s lives very quickly. The vast uptake of online video platforms, such as Teams, Zoom, Skype, and others, meant that online focus groups no longer had to be either synchronous or asynchronous but could be face-to-face almost as if they would be conducted in an offline setting. This made focus groups more accessible and allowed for easier participation than was previously available when conducting focus groups face-to-face. Video platform focus groups have also allowed for greater conversational opportunities than traditionally available on synchronous or asynchronous platforms. Due to the global lockdown, focus groups needed to be conducted online if research was to continue. Much of this research was conducted through trial and error. This meant that those researchers adopting this early intervention were able to learn from their experiences. Coproduction of research is an important part of ensuring that research has an impact on those that it is researching. The author is an advocate of ensuring that nothing is done to people, but that they are involved and changes are made with them. Learning about coproducing focus groups has enabled her to develop her academic practice and embrace coresearchers who would not usually be involved in academic research. In the UK particularly, people diagnosed with physical or mental illnesses are encouraged to become patient experts (Allen et al. 2016), which allows them to find out more about their condition and request appropriate treatment. Service users need to feel confident when discussing their condition, allowing them to feel empowered when it comes to decision-making (Allen et al. 2016). These experts by experience are fundamental to involve in research if researchers are to truly learn what does and does not work in health and social care.
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Access to Participants and Ethics
Participant access within health and social care research has long required serious thought and reflection about who is necessary to include and what impact this may have on their well-being, particularly if the research may invoke strong emotional responses. Social media recruitment is becoming more widely used within academic research and is accepted as a useful way of recruiting people for research that is also conducted online. A study conducted in Australia found that many researchers were not confident in how to interpret the ethical rules around recruiting participants via social media (Hokke et al. 2020). This is a common concern for this relatively new area of research, and the changes in attitudes around social media participant
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recruitment have changed rapidly over the past few years. Far from having to justify why a study is using this method of recruitment, researchers should now have to justify why they would not. The majority of adults in the Global North use a form of social media at least once a week (and many much more frequently), so this would be the most efficient way of recruiting people. This method is cost-effective, with targeted advertising being relatively cheap and easy to set up. The growth of more specific health forums and groups also means that it is now easier than ever to find communities that have previously been hidden or termed “hard to reach” (Bragard et al. 2020). A note of caution has to be that although access to vast amounts of the population is easy to access, that is a small percentage of people that do not regularly use social media or do not use the internet at all. This small percentage becomes much larger in some areas, countries, or even continents. Researchers can, therefore, never assume that the population being researched online is fully representative. The number of participants is also recommended to be fairly small, which also does not align with being fully representative of the research population. Dos Santos Marques et al. (2021) state that three to four is the best number of participants for focus groups, which allows for the participant’s voice to be fully present within the analysis and subsequent write-up of the findings. A link with an already established group may help with accessing people willing to become coproducers of the research; however, links may need to be forged if none are existing. A recommendation from someone people already have links with can be beneficial and facilitate trust in the early days of the research. Face-to-face research may involve a professional who is able to counsel individuals if they become distressed at any point during the discussion. Alternatively, there may be access to a supportive helpline such as Samaritans, or Mind (within the UK). Conducting research in separate locations may mean that cues around distress or despair are missed by the facilitators and they are unable to advise and, therefore, also follow up with the individual that has been affected. It is, therefore, important to ensure that the participants have been given detailed information regarding the topic of the research and are given information about whom to contact in the event of any adverse experience. This should be reiterated at the beginning and at the end of the online focus group. Dynamics of power depend on how the research is constructed and the relationship between the research team as a whole, including the experts by experience, and eventually, the participants. Andress et al. (2020, p. 6) found that power dynamics between community and academic partnerships can be addressed by using a series of tools designed to “decrease the power differentials between groups by examining power dynamics and other concepts like historical and ongoing institutionalization of structural barriers to equity and power.” Researchers need to understand the notion of defining the populations to be researched as vulnerable, which labels them as “needing” research and researchers to save them where they are unable to save themselves (Beebeejaun et al. 2015). Having an initial stance of bringing together experts to collaborate on research where there is a gap in knowledge can ensure that the dynamic starts as one of equity, which can be further enhanced by fair payment for all coresearchers, as shown in Case Study 1.
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Online Focus Groups or Consultation Groups
Online consultation groups can be delivered most effectively when coproduced. Online consultation groups are similar to focus groups in the way that they are arranged and conducted. Consultation groups (sometimes called PPI – Public and patient involvement) can be useful when trying to get funding. This is not research per se, but a way of understanding a particular cohort better. The cohort does not have to sign consent forms as none of their personal data is recorded; however, notes are taken on what they say. This can be fed back to any participants after the event when they are invited back. Participants and coproducers can be paid for their time. During this section, the term consultation groups will be used as this is how the author conducted the research in Case Study 1. Apart from gaining participant consent, the way that consultation groups and focus groups are conducted is the same. Consultation groups are an effective way of gathering multiple views but can be difficult to manage if numbers are larger than four or five participants, or if there are people with poor internet connections. In the author’s experience, participants attend consultation groups because they feel that they have a lot to say on the topic. There is a possibility that this method would not be favorable to a number of people as they may feel that they are not pushy enough to get their voice heard, or they may not have a private space available to talk freely where they are able to access the internet. Therefore, there are significant limitations to this method, but also substantial gains, especially if coproduction can be achieved. Through coproducing an online focus or consultation group, the researchers can discuss their research knowledge with their coproducers, who in turn will discuss what is important to them as someone as experts by experience. Cocreating a semistructured interview schedule will ensure that the content of the questions is relevant to the research cohort and will ultimately yield more useful results. One example of this in the author’s research was with Youth Mental Health Matters (YMHM), a charity set up by young people for young people (see Case Study 1). During a period in 2020 when people were “locked down” and not allowed to leave their homes for fear of spreading the Covid-19 virus, a group of researchers from Manchester Metropolitan University collaborated with two young people from YMHM to run a consultation group with people between 16 and 24 years old, and another for professionals, parents, and teachers. Together they codesigned the research, cowrote the semi-structured questions, co-facilitated the focus groups, co-analyzed the resulting content, fed it back to the participants in a final online session, and co-authored an article for an online journal (Heyes et al. 2020). Case Study 1 – Coproducing and Conducting Online Consultation Groups March to June 2020 As part of a large funding bid, the research team wanted to ensure that they were proposing research that actually needed to be conducted and would make a difference in people’s lives. The overarching theme was around the mental health of children and young people. One of the academic researchers had ongoing links to a
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Manchester-based organization called Youth Mental Health Matters, and the team asked if they would be interested in working with them to consult other young people about mental health services in the UK. Two people who volunteered for the organization had the experience of facilitating small groups previously and offered to coproduce the consultations with the team. This organization had been set up for young people by young people. Their aim is to raise awareness of the mental health trends in young people, train teachers, pupils, and parents on how to spot mental health symptoms, and support them to overcome poor help-seeking behaviors. Their success has resulted in being regularly invited to participate in the mental health agenda at roundtable discussions in the UK and European Parliament. This particular group had access to many young people with diagnosed mental ill health, and so the people coproducing the research already had access to potential participants. The first meeting with Lauren and Jessica, coresearchers, was about understanding the practicalities of the research, how much time they could spend on the project, how comfortable they were with each aspect of conducting the research, and what the team could offer them in terms of support or learning that they could use in employment in the future, and the payment they could expect as coresearchers. Payment differs according to the research guidelines being adhered to, but the team was able to offer payment in line with INVOLVE guidelines, which recognizes the expertise of the individuals in line with the level of work that they are contributing to. This means that they get a payment that is fair and not tokenistic. Coproducers should be made to feel as though they are an equal part of the team, not as though they are there to fill a quota. Usually, with a group of young people, it has become customary as researchers to bring snacks, or arrange for pizza to be delivered during face-to-face focus group sessions. This helps to attract young people to the focus groups and makes them feel as though they are getting something out of it, as it can be difficult for participants (of any age) to imagine the far-reaching impact that their words will have on the (hopefully not too distant) future. It is a nice gesture to ensure that the participants feel as though they are getting something back for their participation, particularly if payment is not an option. If both can be achieved through research funding, even better! However, as the consultation group was going to be online, then it was not possible to offer snacks, although it was ensured that payment in the form of vouchers did occur, in line with INVOLVE payment guidance. Lauren and Jessica confirmed that the young people would prefer an online focus group and gave helpful information about the best time to conduct the sessions, how long they should last and how they should be facilitated. The online consultation groups were booked for 2 pm, on Zoom, and would last for approximately 1 hour. Lauren and Jessica advised that this had been a popular time for the engagement of similar groups in the past. It was decided that there should be one online session for young people with mental ill health, one session for parents, professionals, and teachers, and a final session inviting all participants for us to feedback on the findings and check that the researchers had captured the meaning of their conversations correctly. Lauren and Jessica commented that having a young person (rather than a research team member) host the first consultation group will
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help to facilitate the young person’s voice, and they felt that young people were more likely to openly discuss their thoughts and feelings with people that they felt were similar to themselves. There was a concern that if a researcher was to facilitate, then the power dynamic between researcher and participant may mean that they feel as though they cannot be as open and honest. Lauren and Jessica were also keen to host the second consultation group with professionals, parents, and teachers, noting a young person hosting this will again change any potential power dynamic and help to de-jargonize the language these people often use. In both of these online groups, there would be three researchers present. This was so that one could step in and help to facilitate if needed, but generally, be there to support the facilitators, and two would take notes so that there was no requirement to record the sessions. The decision not to record the sessions was also to make sure that people felt able to talk freely, and to have only three academics from the research team take part in the sessions was also to make sure that the facilitators and participants did not feel overwhelmed by the number of researchers/academics that were present, again thinking about the dynamics of power. After each consultation group, the whole research team met over Zoom to discuss the issues raised. Once the first two groups had been conducted, the team discussed which issues came up in both groups and what the similarities and differences were. The team fed this back to the final online consultation group for their comments, with Lauren and Jessica once again facilitating and at least two academics taking notes. Three young people attended the first consultation group, and another three attended the final consultation group. The second consultation group for parents, teachers, and professionals was attended by six people, and three attended the final consultation group. Initially, the team was disappointed at the low turnout for the first group, as eight young people had indicated they would attend. However, the three participants were very open about their experiences in a way that they may not have been able to be if there were more people, either through having to share the discussion time with more people or because of being conscious about taking up too much time, where other people may not yet have had their say. During the second consultation group, it was evident that all six participants had a lot to say, and they were interested in each other’s experiences and keen to learn from them. There were some instances where several people tried to speak at once, which meant it was difficult to keep track of the conversation. Although this can be similar to face-toface groups, generally the conversation can still be heard, whereas online, researchers either hear the person who has the best quality microphone, or the sound may cut out completely, and then there is silence as everyone stops and waits for the others to speak. One participant within this group also had an issue with intermittent Wi-Fi. This meant that they were difficult to hear and kept dropping out while mid-conversation. Despite this, the participants stated that they felt they had had their say and were keen to carry on the conversation further within their organizations, or with their peers. The team also stated that if people felt as though they had more to say, they were able to email the team. This helped to ensure that the person struggling with internet access on the day, or those who spoke over one another, still had a chance to express their opinion, especially if they felt as though
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they were unable to during the online session. A few participants thought of points that they wanted to add after they had thought about the conversation a bit more and did use the email option to express these. Once the consultation groups were completed, the research team met via Zoom to discuss the analysis. Lauren and Jessica gave their opinions from their perspective, adding a dimension to the analysis that could only come from experience. This was around the nuances of the language that the participants used or explaining in more detail what happens in specific instances, such as how mental health is discussed in school at the current time. The academic researchers who had taken notes from the sessions discussed their understanding of the issues raised, and the other researchers in the team were able to offer an outside perspective. Together they agreed on the main topics and put these into a format where the facilitators could feed this back to the participants in the third online session. The final feedback session was also attended by six people from the first and second consultation groups. They were able to add more context to findings and stated that they felt as though they had been listened to within each session, enjoying what was termed “a cathartic experience.” The team added any new information to their analysis and decided to develop this into an informative article. They selected the online journal Youth and Policy as Lauren had published in the journal previously and found the experience to be good, with the editors being helpful and informative. Due to time constraints for all researchers, the team approached writing the article with who could spend the most time on it and, therefore, would be named in order accordingly. Lauren and Jessica were confident in their writing but recognized that they had limited time available. Therefore, it was decided that the team would discuss the writing of the article as a group, and divide it into sections, with Lauren and Jessica editing the final draft of the article. If they had wanted to be more involved in this part, the researchers would have supported them in this. The team recognized that Lauren and Jessica were very capable and had excellent writing skills. However, if this was not the case and the coproducers were not as confident with these skills, there would be ways that the team could break this down into small parts. For example, if they would want to be a significant author of the article, asking them to start with 2500 words on a specific theme, discussing with them what that might look like, and giving feedback on their work would be a way of supporting them with this. It may take longer and require patience as they learn and develop in confidence but is important to ensure that they feel as though they are recognized as full coresearchers. Again, this may depend on funding as it should never be expected that coproducing researchers should work without payment. As a research team, the researchers felt as though Lauren and Jessica were an amazing addition to their team. They were willing to be involved in everything the team did and were full of enthusiasm and ideas that permeated the rest of the team. This work was challenging as they were conducting consultation groups online for the first time and were learning together. Having a good team was something that they did not take for granted, but they were very grateful for the support of each other through this short project. The resulting information went toward a large NIHR grant, which was unfortunately not funded, but they were grateful for the experience
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and were more confident in trying out online focus and consultation groups for other research projects. Case Study 2 – Failing to Coproduce but Using the Experience As a Learning Tool May to June 2022 The second case study will be drawn upon as a project to evaluate a postgraduate program for well-being practitioners. These practitioners worked in a variety of roles for a variety of third-sector organizations that came under one larger social enterprise. In order to evaluate the effectiveness of the teaching and content of the program, the researchers designed a method that would be based on contribution analysis but would include an element of coproduced focus groups with the users of the services provided by the practitioners undertaking the program. The initial research protocol was written before the pandemic lockdown and involved face-toface focus groups with the people who draw on support from the practitioners. The researchers hoped it would be possible to recruit at least two people to coproduce the focus groups for the practitioners themselves and be involved with all parts of the research as detailed in Case Study 1. They were reliant on the social enterprise to recruit for the focus group, and they assured the researchers that they had several people interested in participating. When the lockdown was announced, it was not clear how long this would be for, so the researchers delayed starting the research. As soon as it became clear that it was not going to be a short lockdown, it was decided to try and conduct the focus groups online. As the practitioners were now also conducting their roles online, the social enterprise thought that it would be useful to also book two focus groups in advance, so that the practitioners were able to keep the time free to participate. This was far enough in advance for us to be confident in being able to recruit people from our first focus group to coproduce the practitioner focus groups with plenty of time to carry out the tasks required. The first focus group was at a time and date set by the social enterprise, and they had sent out the Zoom link to several participants. Two participants were to access the focus group by going into the organization where they usually accessed support to be able to use a computer and the internet. Due to funding restraints, the author was the only facilitator, but she had agreement from the participants through their information and consent forms that she could record the call on her Dictaphone. As a researcher with some years of experience, the author knows her own limitations, one of which is taking notes while facilitating, so where possible, if she knows she is going to be alone, she will always ask permission to record for her own notes only. The Zoom call had been set for 2 hours to allow for any issues, but due to the nature of the research (mental health), the author and the social enterprise had decided that the session should not be more than 1 hour. The first participant to gain access to the focus group was one of the expected participants accessing via one of the organizations. He was in a room that was private; however, there were issues with the internet, and he could not fully access the focus group for 15 minutes. At this point, he was visibly getting agitated, and the author was worried that he would have to abandon the call. As the facilitator, she was
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unable to help with the issues that were happening as they were beyond her control. She used the chat function to convey her support and that there was no rush, they would wait for the issues to be resolved. Fortunately, there were no other participants on the call at that time. As the issues got resolved, the author was sent an email from a practitioner present at one of the other organizations, stating that the participant had been delayed and they were trying to get her set up in a private space, but that they were also having difficulties. Twenty-five minutes after the initial start time, there were no more participants, and the second participant was still unable to access the focus group. The author decided that she would go ahead and conduct the focus group with the one participant that was patiently waiting. She stated that the focus group would be a maximum of 1 hour, and the participant disclosed some health issues that meant they may need to cut it short. The author reassured him that this would be absolutely fine and said that they could reschedule if that would make it easier. He was happy to continue. As the author was about to ask the first question, the second participant gained access to the focus group and she stopped to welcome her and allowed for introductions and to explain what they could expect from the focus group. The focus group eventually began over 30 minutes after it was scheduled to begin, and the author was feeling slightly anxious and flustered. Once she had asked the first question, her fears were allayed and the conversation between the two participants flowed easily. They were both very open and honest and an hour flew by very quickly. The author was very conscious of the health condition that had been disclosed by one of the participants at the beginning of the session and she asked if he was feeling ok, and told them that she would bring the session to a close once she had asked if there was anything else they would like to add. The focus group lasted for a total of 1 hour and 20 minutes as both participants wanted to add more information, and both said they had enjoyed the session. Both participants had their support workers in the building to talk to if needed straight afterward in case there was anything that had been brought up that invoked an unexpected emotional response. It had been arranged that other participants would have been able to speak to their practitioner immediately after the focus group via Zoom from their homes or private space; however, as they did not attend, this was not needed. The author had initially felt disappointed that only two participants had attended the focus group, but it became clear that as both had a lot to say, it would have been very difficult to have facilitated any more participants successfully. While she was trying to ensure that the participant with the health issue was still okay to continue, she had decided that it may have been inappropriate to talk to the participants about the next stage of the research, which would be to coproduce the focus groups for the practitioners. She did not want the participants to feel as though she was putting unreasonable expectations on them as they were currently accessing support for several issues to do with their mental and physical health. The author did not want them to feel as though she was putting pressure on them to play a larger role in the research than they could manage at the time. In hindsight, she should have allowed them the autonomy to make this decision themselves by at least giving them the information. The participant focus groups were then conducted with her colleague as
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a facilitator and herself taking notes. They constructed the questions from the information given in the first focus group with users of the services, and from the initial literature review conducted for the contribution analysis and aligned them with the expected outcomes from the Theory of Change. What they were missing was the perspective of the people accessing the services and an understanding of the questions they would ask. This felt as though it was detrimental to the evaluation, although it had been agreed with the social enterprise due to the steep learning curve, they all found themselves in throughout the initial months of the pandemic. These focus groups were much larger, with 12 participants in the first group and eight participants in the second group. By June 2020, people were getting used to conducting most of their meetings using online platforms. The first of the practitioner focus groups was a testament to this, as there was not a flurry of people trying to put their opinions across, but each of the participants was respectful of the others, sitting back as they did not want to talk over their peers. This meant that it was easier to facilitate by calling upon the participants in turn, which did not help the conversation to flow. This group showed that having more people participating in online focus groups does not necessarily mean that more information is gained from them. Although this second case study example is more about the errors that may occur with attempting online focus groups and coproduction, it serves as a valuable lesson. Research around ideal numbers for face-to-face focus groups is still very much relevant for online focus groups when researching health and social care. As a true researcher, the author is a firm believer in using all experiences to enhance her own practice. In this particular case, she has since been asked to conduct a follow-up evaluation, and she has spoken to the original participants about being involved as full coresearchers. They have now been included as coresearchers in the protocol and are looking forward to working with her later in 2022.
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Conclusion and Future Directions
Coproducing focus and consultation groups with experts by experience is a valuable experience for research teams. Through developing her own practice from online asynchronous focus groups and synchronous face-to-face focus groups, the author was able to take a lead in adapting research methodology from face-to-face to online in just a few months. The two examples given in this chapter serve as examples to show what can happen in real life when researchers have to rely on technology. In both examples, the author hoped to develop strategies and knowledge of conducting online consultations and focus groups with experts by experience as coproducers of the research. Although both of these cases happened at a similar time, the experience was very different. Far from understanding these as successful or unsuccessful, the lessons from these two examples are more about being adaptable, being reflexive, and understanding her own accountability. It can be disappointing when the research does not happen as planned, but that does not mean that the resulting information is not valuable. The evaluation in Case Study 2 provided some incredibly insightful information that has been used to help redesign the program that was evaluated. And
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the research in Case Study 1 produced research that gave equitably developed insights into the gaps in mental health care for young people; however, when the research team used the information as part of a funding bid, it was rejected. During the last 2 years, she has conducted much research online and worked with many experts by experience to develop and coproduce as much as she possibly can. What she has learned has been as a result of working in partnership with experts in many guises. This learning can be summarized into two short lists: one exploring ways in which research teams can embed experts by experience into research from the initial design, collaborating equitably to coproduce online focus or consultation group research; and a second list that offers practical tips to keep in mind when codeveloping such research projects. As stated at the beginning of this chapter, these lists are to start readers on their online focus group coproduction journey and are not a definitive list, but a list that they can add to as they gain their own experience, and reflexively consider how to deconstruct academic privilege to empower communities that have not previously been afforded that opportunity. Coproducing online focus and consultation groups: • Understand your cohort – Experts by experience will be able to suggest alterations, practical timings, and ideas to help with accessibility. • Cowrite interview schedules – There is no harm in using existing research to prepare some well-thought-out questions but coproducing these will ensure they make sense to your participants and will use language that is understood by them. • Training as required – Build training the expert coresearchers into your project. You should make provisions for enhancing their skillset in a way that is accessible for people with all educational backgrounds. • Facilitation – Allow the experts in the subject to facilitate the online focus groups if they feel comfortable in doing so. If they do not, do they need training? • Analysis – All coresearchers should be part of this stage as the analysis benefits from different perspectives. Again, the experts by experience should have an equal voice during these discussions. • Cowrite any outputs and invite them to conferences. If the experts by experience are not included in research outputs then have they really been valued as coresearchers at all? Practicalities of conducting research online: • Have at least two facilitators – One to purely facilitate, and at least one other to take notes, sort technical issues, let people in, mute noisy people, and so on. • Send the date, time, and link to participants in advance and follow up closer to the time. If this is through a third party, ensure you set a maximum number of participants. It may feel like a good idea to add an extra couple in case of no-shows, but I would recommend against this. Make sure that if multiple participants are on the invite list they are all bcc’d (blind copied). • If consent is required, get this in advance or verbally on the day of recording – If the participants have not read and understood the information sheet, read this out
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and answer questions before conducting the research. Only when all participants have understood and consented should the research continue. If they do not understand their role and purpose, you may need to reschedule and take time to make the information more accessible. • Have a maximum of five participants – Research funding may dictate this figure, but the best online focus groups I have been part of the research team for, have had two to three participants. • Be clear at the beginning about how long the online focus group will last and adjust to account for any health restrictions that you are made aware of. • Always conduct a feedback session – Sense checking that you have interpreted the voices of the participants correctly is vital to any research, particularly if your aim is to make a positive change in future health and social care provision.
References Abrams K, Gaiser T (2017) Online focus groups. Sage Publications Ltd. https://doi.org/10.4135/ 9781473957992 Allen D, Braithwaite J, Sandall J, Waring J (2016) Towards a sociology of healthcare safety and quality. Sociol Health Illn 38(2):181–197 Andress L, Hall T, Davis S et al (2020) Addressing power dynamics in community-engaged research partnerships. J Patient Rep Outcomes 4:24. https://doi.org/10.1186/s41687-02000191-z Baym N (1995) The emergence of community in computer-mediated communication in Jones, S. (ed) (1995). Cybersociety. Thousand Oaks, CA: Sage Beebeejaun Y, Durose C, Rees J, Richardson J, Richardson L (2015) Public harm or public value? Towards coproduction in research with communities. Environ Plann C: Gov Policy 33(3):552– 565. https://doi.org/10.1068/c12116 Bell DM, Pahl K (2018) Co-production: towards a utopian approach. Int J Soc Res Methodol 21(1): 105–117. https://doi.org/10.1080/13645579.2017.1348581 Bragard E, Fisher CB, Curtis BL (2020) “They know what they are getting into:” researchers confront the benefits and challenges of online recruitment for HIV research. Ethics Behav 30(7): 481–495. https://doi.org/10.1080/10508422.2019.1692663 Dos Santos Marques IC, Theiss LM, Johnson CY, McLin E, Ruf BA, Vickers SM, Fouad MN, Scarinci IC, Chu DI (2021) Implementation of virtual focus groups for qualitative data collection in a global pandemic. Am J Surg 221(5):918–922. https://doi.org/10.1016/j.amjsurg.2020. 10.009 Durose C, Beebeejaun Y, Rees J, Richardson J, Richardson L (2012) Towards co-production in research with communities. (Connected communities). Arts and Humanities Research Council, Manchester, UK Hennink M (2007) Introduction to focus group research. In: International focus group research: a handbook for the health and social sciences. Cambridge University Press, Cambridge, pp 1–17. https://doi.org/10.1017/CBO9780511619458.002 Heyes K (2016) Using virtual ethnography to research vulnerable participants online: a case study of mental health online community support forums. SAGE Research Methods Cases Part 2. https://doi.org/10.4135/9781526403605 Heyes K, Craig E, Gray P, Whittenbury K, Barclay L, Leigh J (2020) Young people and mental health: how do young people want mental health support to be delivered? Youth Policy. https:// www.youthandpolicy.org/articles/young-people-mental-health/
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Community Mapping Method Naiema Taliep and Ghouwa Ismail
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 What Does the Term Community Mean? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 What Is a Community Asset? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Mapping: Origin and Overview of Asset Mapping . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 CAM as a Participatory Community-Engaged Research Method . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Mapping Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Identifying the Aim, Purpose, or Desired Outcome/s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Identifying the Setting and Participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Determining the Time and Resources Needed to Map Assets . . . . . . . . . . . . . . . . . . . . . . . 4.4 Establishing the Kind of Assets to Include . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5 Identifying Specific Methods for Mapping Assets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6 Making Sense of the Data and Planning the Way Forward . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Community mapping, also known as asset mapping, is a participatory relationship-driven method that focuses on assets and resources and promotes community engagement, networking, ownership, and sustainability. As an approach that takes advantage of a community’s strengths and resources, community mapping facilitates the process of uncovering solutions. Community mapping is a sequential way of identifying, visually depicting, ranking, and mobilizing tangible and intangible community assets. There are multiple ways of mapping community resources, including participatory community-engaged N. Taliep (*) · G. Ismail Institute for Social and Health Sciences, University of South Africa, Lenasia, Johannesburg, South Africa South African Medical Research Council-University of South Africa Masculinity and Health Research Unit, Tygerberg, Cape Town, South Africa e-mail: [email protected]; [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_57
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mapping, online mapping (Geographic Information Systems), compiling a capacity inventory, cultural mapping, community relationship mapping, and developing an interest checklist. By inventorying and displaying community assets on a map, researchers will have a more in-depth understanding of what these assets can be used for, how they can be mobilized, and collectively identify ways to improve the health and well-being of community members through these assets. Keywords
Assets · resources · asset mapping · community building · community asset mapping
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Introduction
Many conventional approaches to community building start with a needs analysis or some alternative way of assessing and focusing on the community’s needs (Stuart 2013). It is, however, challenging to assess community needs, identify, and prioritize risk and protective factors, and plan for new programs or interventions embedded in evidence-based initiatives (Crozier and Melchior 2013). When focusing only on needs, researchers and practitioners may be more inclined to pay attention to the challenges and can easily overlook the many strengths and resources that exist in a community. Negative portrayals of communities may cause people to internalize such depictions and view themselves as lacking, powerless, incompetent, and unable to make decisions for themselves (Kretzmann 2010). Consequently, this way of thinking reinforces the idea that only experts outside of the community can provide effective assistance (Kretzmann 2010). Graham (2017) notes that it is common practice for community needs assessments to overlook important assets, such as the culture and knowledge of underrepresented community members. In contrast, based on a “half-full glass” approach (Kretzmann and McKnight 1997), asset mapping facilitates an intentional shift from a deficits outlook to a positive, resource-based one that focuses on building community by mobilizing existing location-based assets within a community. Asset mapping, also referred to as Community asset mapping (CAM), began with the aim to identify the prevailing communicative strengths within local communities and utilize these as prospective elements for building healthy communities (Villanueva et al. 2016). CAM refers to a broad range of participatory mapping processes utilized for visualizing, creating, and/or analyzing the spatial information associated with a particular community (Nelson 2019). CAM is a positive, participatory, relationship-driven methodology that focuses on identifying and inventorying the available assets within a particular community (Cutts et al. 2016; Kramer et al. 2012; Kretzmann and McKnight 1993; Taliep et al. 2020). Through the process of CAM, one can ascertain and map all the individual, social, relational, physical, and economic resources that a community possesses (for example, skills, interests, experience, physical community structures, and organizations).
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Asset mapping has been used in numerous contexts with various populations, and with diverse aims. Several disciplines have used asset mapping for research and development in a variety of areas, including education, land use, health, and crime and violence prevention (Chambers 2006). Weng (2016), for example, used asset mapping to determine informal and formal social support networks or service assets accessible to the Jacksonville Asian American community in Florida to obtain a more comprehensive account of help-seeking behavior in this community. In Canada, Fang et al. (2016) used this method to explore experiences of place, uncover the barriers and enablers to gaining access to the built environment, as well as to co-develop place-based solutions with service providers and older residents in a new inexpensive housing development program. In a cross-country study, Taliep et al. (2020) and Cutts et al. (2016) used asset mapping in a community in Strand, Western Cape, South Africa, and Memphis Tennessee in the United States to identify factors that contribute to safety and peace to determine how these community assets could be mobilized to prevent male interpersonal violence. As an approach, asset mapping underscores the positive know-how, capacity, and competence of communities to ascertain relevant issues, identify and develop suitable solutions using the capacities and resources of their community members, local structures, and institutions, and implement these solutions in a culturally fitting, sustainable manner (Lightfoot et al. 2014). This approach takes advantage of a community’s strengths and resources through participatory mapping, and, thus, facilitates the process of uncovering solutions. CAM enhances and promotes community engagement, participation, ownership, and sustainability (Lazarus et al. 2017). This approach not only fosters community building but also cultivates self-reliance, provides tools for teaching problem solving and strengthens community ties (Weng 2016). The action orientation of this strategy cultivates a mindset of liberation and cognizance of agency, personal and collective, which encourages a move away from powerlessness and learned helplessness mentality (Lazarus et al. 2017). The many, often underutilized, tangible, and intangible assets within a community (including those of different communities such as a community of interest or a university community) serve as a foundation for community transformation, regardless of whether one wishes to start an after-school program, a Youth Café, a community campaign, or any other endeavor to address important challenges in a community. The goal is to construct a tangible output – a map, which can be very valuable in the planning phase of a project. In light of the aforementioned, this chapter provides an overview of asset mapping as a participatory research method. The chapter is organized as follows: first, it considers the conceptualizationn of the key concepts, followed by a brief overview of the origin of mapping and asset mapping. Thereafter, it discusses CAM as a participatory community-engaged research method, provides a detailed outline of the mapping process, and how to make sense of the data produced during the CAM process. The final section provides the authors’ concluding thoughts on the CAM technique.
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What Does the Term Community Mean?
A community can be thought of as a “social entity with a shared identity,” which can be based on culture, race, political membership, religion, group membership, and place or space, among others (Taliep 2016). Kretzmann and McKnight (1993, p. 2) define “community” as an entity that includes three elements: (1) territory or place, (2) social establishments or organizations that are responsible for regular interaction between residents, and (3) social interaction on issues concerning a common interest. They note though that many issues affecting community members remain place based. As geographically bounded, the community is defined by using natural boundaries (for example, a region, zone, neighborhood, or district), by being geographically spread out but sharing a common identity (e.g., a racial or ethnic group), or in terms of socioeconomic and demographic patterns (e.g., coming from a low socioeconomic background) or political interests (Taliep 2016).
1.2
What Is a Community Asset?
AN ASSET
A feature, component, resource, strength, or entity that supports and enhances the capacity of community members to improve the health and well-being of their community.
An asset refers to any feature, component, resource, strength, or entity that enhances the capacity of community members to improve the safety, health, and well-being of their community (Foot and Hopkins 2010). Community assets can be intangible (assets that are not physical in nature, those we cannot see, feel or touch, e.g., values) or tangible (have a physical form – those individuals can touch, see and feel, like a building) resources of a community (Cochrane et al. 2022; Cutts et al. 2016; Lazarus et al. 2017; Taliep et al. 2020). These can be individual, associations, and institutional assets, including specific institutions, such as faith-based organizations. As defined by Griffin and Farris (2010) and Weng (2016), assets refer to individuals with valuable skills that can be shared, citizen associations that connect individuals to collectively accomplish common goals, as well as local institutions. Individual assets refer to what an individual has and what the individual can bring to the group. Citizen associations include both formal and informal organizations or establishments within a community, for example, social groups or recreational programs (McKnight and Kretzmann 1996). An institution is described by Surbhi (2020) as an organization that has been set up for educational, social, religious, or professional purposes. Local institutions refer to institutions that reach into a community or provide specific services to a community, such as nonprofit organizations, businesses, health services (hospitals and clinics), local government, social service agencies, libraries, schools, colleges, or universities (McKnight and Kretzmann 1996; Weng 2016).
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Mapping: Origin and Overview of Asset Mapping
A map, like all records, is a representation and product of cultural-historical circumstances and, thus, a creation of the technology of recording in a specific culture and historical era (Young 2010). Rooted in imperialism, the making of maps has traditionally been an elite and exclusive practice commissioned by royalty and used in the past as instruments of power and control (Nelson 2019). Dorling (1998) and, later, Edney (2019) noted that the origin of most maps was about social and territorial control, expansion of empires, and sustaining the power of states and the elites. Historically, maps have been utilized for the occupation of land, the exploitation of natural resources, and for taking advantage of indigenous peoples whose thinking about space and place differed greatly from the occupiers (Nelson 2019). As pointed out by Nelson (2019), these early historical aspects of cartography are vital to take into account since this unequal, distorted division of power has influenced how mapmaking, spatial analysis, and subsequently, community mapping has grown over time. Scholars who criticized the role of maps have emphasized the need to incorporate new “voices” into mapping that reflect other more marginalized values, through local perspectives and information provided by “ordinary people,” so that people can mobilize representations that are not solely reflective of institutional interests and unequal power relations (Astaburuaga et al. 2022, p. 4). Community mapping differs substantially from conventional cartography and map-making and the uses to which they are subsequently put (Corbett 2009). Participatory community asset mapping, a topical trend in development discourse, allows local communities to be part of the power structures by influencing what is mapped and deciding what must be on the map (Panek 2015). Community asset mapping is rooted in the Asset-Based Community Development (ABCD) concept and framework, which can be traced to the work conducted by John B. Kretzmann and John L. McKnight (1993). The ABCD approach is a “bottom-up” way of working with communities. They postulate that there is no single individual who does not possess certain capacities, talents, and gifts and that the quality of a person’s life is dependent partly on the extent to which they tap into and utilize those abilities, express those talents and impart or share those skills or gifts. Just as sharing improves their individual lives, community members benefit when they channel and mobilize their capacities for the well-being of their community (Kretzmann and McKnight 1997). One reason for this capacity-oriented focus noted by McKnight and Kretzmann (1996) is because historic evidence shows that substantial community development only occurs when local community members are dedicated to investing themselves and their assets in the effort to bring about meaningful change. Hence, the top-down and outside-in approaches are ineffective, and the bottom-up approach is foregrounded. McKnight and Kretzman (1996), however, acknowledge that valuable outside assistance can be provided to communities engaged in mobilizing their own assets. In essence, the primary objective of asset-based community building is to undo what the majority of community-building initiatives do, that is, they focus on problems and needs prior to considering the resources, assets, and solutions existing in communities. Kretzman and McKnight (1997) note that every community has needs and challenges, but the onus is on the community whether they intend to focus
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exclusively on needs. By focusing on the assets of their community rather than the needs, the community members are encouraged to see their community as a “glass half-full” of assets instead of a “glass half-empty.” Through this approach locals are, thus, encouraged to focus on the assets in their community in order to view their community as a “glass half-full” of resources, as opposed to a “glass half-empty” with needs as subscribed to by the predominantly “needs-based” development model (Kretzmann and McKnight 1997; Mathie and Cunningham 2002). The half-empty glass represents the idea that communities are lacking and have many needs and challenges. The half-full glass, on the other hand, represents the idea that communities have many strengths, resources, capabilities, and assets. Thus, the ABCD approach opposes the deficit view of low-income communities as having limited resources by focusing instead on individual and collective capacities, their potential to develop new combinations of strengths, different forms of opportunity, and new sources and methods of income and control (Kretzmann and McKnight 1993, 1997). As indicated, an asset-based approach is solution-focused and intends to develop sustainable communities by uncovering and highlighting resources and strengths that already exist within communities, particularly human and social capital. In this way, the ABCD framework takes a strengths perspective by acknowledging that the community’s assets can be used for community building and for solving problems within the community as well (Lazarus et al. 2017; Weng 2016) Within this framework, institutions, organizations, and individuals are encouraged to work together to consolidate and mobilize existing assets in their community (Lazarus et al. 2017; Weng 2016; Taliep et al. 2020). The idea is that an asset-based community-focused approach is more likely to create awareness, motivate, and consequently mobilize citizens through, for example, developing an action plan to make positive and meaningful changes in their communities. Notwithstanding these benefits, the ABCD approach has a number of drawbacks. The approach hinges on the belief that sustainable development does not occur from the outside, but from within a community (Bergdall 2012). Kramer et al. (2012), thus, contend that the ABCD approach commonly ignores the role of outside institutions in community development processes. They also argue that the concept of “community” in CAM processes is frequently simplistically applied and uncritically viewed, which often denies the existence of conflict and power dynamics within communities. Others note that the ABCD model does not address the complexities linked to local life, its many histories, and the various macro-level structural impediments caused by powers of neoliberalism and globalization that marginalized communities face (Alevizou et al. 2016).
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CAM as a Participatory Community-Engaged Research Method
Community asset mapping is characteristically participatory in nature. As an alternative to the drawbacks inherent in the one-sided nature of traditional research approaches, participatory approaches incorporate the views, experiences, and opinions of end-users into the processes of prioritization, review, conducting, and
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disseminating research (Bergold and Thomas 2012; Ngunjiri 1998). Participatory community-engaged asset mapping is a research technique consisting of several participatory collective mapping exercises that are utilized to facilitate a sequential process where communities can identify, map, rank, and mobilize both tangible and intangible community assets, resources, and “gifts” (Cutts et al. 2016; Lazarus et al. 2017). Corbett (2009) notes that a participatory mapping process is a research activity that aims to produce tangible visual representations of the places, people, and experiences that represent a community. It is aimed at answering particular research questions through the direct involvement of community members in order to develop contextually relevant solutions. The direct participation of community members and local stakeholders in the planning and development of local solutions to local challenges, steers the focus to community priorities, thereby enhancing community ownership and long-term sustainability (Taliep et al. 2020). A community-engaged participatory asset-mapping approach: • Is a knowledge-making technique that facilitates a process with communities to identify and build on their existing resources, strengths, and human capabilities. • Assist communities to regain control over their lives and reclaim their own agency. • Enhances participation. • Recognizes and foregrounds the importance of networks and relationships as assets. • Visibilizes or bring to the surface community assets. • Mobilizes assets, resources, skills, and strengths of individuals and communities. • Supports and encourages leadership engagement to promote action. • Adopts an integrated participatory community-driven approach. • Helps reclaim bonds of connectedness by generating community cohesiveness, solidarity, and collaboration, and • Conceives novel theoretical insights (Alevizou et al. 2016; Kramer et al. 2011; Kretzmann and McKnight 1993; Taliep 2016; Taliep et al. 2018). Asset mapping is rooted in the values and principles of Community-engaged Participatory Action Research (CEPAR). Placing the community at the center of its focus and promoting the active participation of community members in every phase of research and decision-making processes are important aspects of these principles. Corbett (2009) contends that participatory mapping adheres to principles of equity and thus is an integral part of participatory community-based research, helping scholars to meet their research objectives and encouraging locals to create a shared awareness and understanding of existing assets, which can be leveraged for community building. Participatory mapping is primarily shaped by the same values and principles of CEPAR, such as equitable collaborative participation and focusing on community assets. It enables researchers and community practitioners to achieve their research aims and objectives while also generating shared awareness of community assets and inspiring and mobilizing participants to build on their community strengths (Corbett 2009; Lazarus et al. 2012, 2017; Taliep et al. 2020).
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Asset mapping also aligns with one of the most distinguishing characteristics of CEPAR, namely, an underlying commitment to action that is integrally tied to the research process. CAM consequently integrates research/knowledge with action by systematically mapping resources and devising a plan to mobilize these assets to address community challenges (Taliep et al. 2020). CAM intentionally focuses on finding ways to mobilize local assets for community building (Lazarus et al. 2017; Taliep et al. 2020). Thus, the mapping process is not just about listing resources and identifying assets, it is also about engaging and organizing the community, creating awareness of what is possible, and changing community members’ mindsets from looking at “what is wrong” to “what can be done” and inspiring them to find solutions thereby building stronger communities (Duncan 2016; Lazarus et al. 2014, 2017; Taliep et al. 2020). The objective is also to connect and engage members, build trust and foster feelings of hope, unlock potential, build relationships, and establish ties and networks (Duncan 2016; Lazarus et al. 2014, 2017; Taliep et al. 2022). The mapping process is a form of collaborative learning and a process through which knowledge is produced, which is regarded as important for challenging top-down approaches to knowledge production (Fang et al. 2016). Participatory mapping is an indispensable interactive method for local knowledge production, with data descriptions transitioning to map-based representations and discussions culminating in visual portrayals of results (Corbett 2009). The participatory mapping process recognizes the importance of an open and inclusive environment where community voices can gain legitimacy, and provide spaces and opportunities for interaction, reflective conversation, interactive dialogue, and critical debate (Cochrane and Corbett 2020; Gilchrist 2009; Corbett et al. 2006; Weyer et al. 2019). This approach, thus, builds on what is already available and embraces local people’s “know-how,” experiences, and skills (Lazarus et al. 2014; Taliep et al. 2020). Maps produced through such a participatory process are essentially grounded in the background, experiences, views, and perceptions of participants and how they perceive their community or context. Drawing on the work on cartography by the map historian Edney (2019), arguably, each map created through participatory mapping processes, can be regarded as a spatial discourse co-produced by multiple people using the same semiotic system to actively participate in creating the maps and their meaning. The maps produced through the mapping processes and activities are, thus, semiotic texts that carry both cultural and factual significance and are embedded in participants’ observations of the world (Edney 2019). In this way, maps depict local knowledge and information (Corbett 2009) allowing mapping to be a meaning-making process. It can, thus, be surmised that since participatory asset mapping is a knowledge-making process, where epistemic justice is foregrounded through the valuing of all knowledge and voices, mutual learning, and the co-creation of knowledge and knowledge products.
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The Mapping Process
The mapping process usually entails constructing an inventory of existing assets employing participatory and creative methods (Alevizou et al. 2016). Participatory CAM workshops comprise well-organized interactive sequential mapping activities or sessions that build on each other, usually with the aim of planning and prioritizing community action at the end of the process (Taliep et al. 2020). It entails the collective development of asset maps by groups of community members in small breakout groups (5–8 people per group for mapping on large sheets or 4–5 people for creating online computer maps) usually of a place-based community located in a particular geographic area (such as a township). This participatory type of mapping allows for interactive conversations and discussions during the mapping activities to reach a consensus and draw or map ideas, thoughts, images, and so on. It entails a participatory process where community members themselves identify and map assets and resources and produces a tangible exhibit of the people, places, and skills that make their community (Burns et al. 2012). Maps of assets are often arranged as a list, an inventory, a topographic chart, or cartography that provides a comprehensive listing of assets and resources, and may include information on local geographical landmarks, relationships and networks, existing programs, local services, local economy, community-based formal and informal organizations, government and institutions, service providers, individual persons, professional and lay skills, communal infrastructure, and distinctive events that may serve as assets and resources (Alevizou et al. 2016; Beaulieu 2002; Taliep et al. 2022). Figure 1 outlines the basic steps for compiling an asset map. Kretzmann and McKnight (1993) identify the following five steps for mapping assets toward whole community mobilization: (1) Mapping the assets of community members, institutions, and organizations; (2) Building internal relationships among local community assets; (3) Mobilizing community assets for community building
1. Identify and Involve Participants • Involve residents and/or service providers and/or organization staff with a stake in the issue • Involve enough people
4. List the Assets of Groups • Identify all the groups (organizations, institutions and associations) in the community and list them • Use other sources to update the list and identify their location and types of services offered and assets
2. Define Community Boundaries • Identify community boundaries • Decide what streets or landmarks serve as the community's boundaries
3. Determine what type of assets to include • Make a list of any particular skills or assets you need to address the issue at hand. • Identify the assets that are relevant to the purpose of your study
5. List the Assets of Individuals
6. Organize the Assets on a Map
• Decide on the types of skills you want to map and develop specific questions to identify them • Conduct a skills audit using a survey
• Participants may use an existing street map of their community or compile their own map of their community • Map resources and assets on maps and show relationships using visual aids
Fig. 1 Basic steps in compiling an asset map. (Source: Adapted from UCLA Center for Health Policy Research. http://healthpolicy.ucla.edu/programs/health-data/trainings/documents/tw_cba20. pdf)
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and development; (4) Developing a community vision and plan, and (5) Establishing external connections to support locally driven development. It is important to note that before commencing with the mapping process, one needs to answer a few important start-up questions to guide the mapping process: • What is your aim or purpose for mapping assets? • What outcomes do you hope to achieve with the mapping of assets? • What is the size of the community in which you are interested in identifying assets? • Who (individuals, organizations, stakeholders, and so on) will be involved, and are they available to participate in identifying assets? • What is the timeframe for identifying and mapping the assets? • What resources do you need? • Are there any funds available for the mapping process? • Which methods do you intend to use to map assets? The next section discusses these start-up questions in more detail.
4.1
Identifying the Aim, Purpose, or Desired Outcome/s
An important first step in mapping assets is to determine the purpose of identifying community resources and assets. Participatory mapping is organized around a shared communal objective and plan for use, and maps are co-constructed using participatory open and inclusive processes (Corbett 2009; Taliep et al. 2022). It is important to be clear and define what the overarching issue is (Schiffer 2007), and what researchers want to accomplish with the asset mapping. The aim or purpose will make it easier to plan for and execute the project (Shahid et al. 2019), and will help them identify their target community. A project aim, for example, might be to design a community campaign to address substance abuse, an activity to keep the youth off the streets, or to map local service providers and find ways for them to strengthen their relationships.
4.2
Identifying the Setting and Participants
After identifying the aim, purpose, or what researchers want to achieve with mapping assets, they will be able to narrow the focus of who their target community is, or who should be involved in the mapping process. Even though researchers should determine the geographic location of the target community, the actual mapping of the community boundaries is done within the mapping process. The official geographic boundaries may not reflect community members’ perceptions of their community’s boundaries (Taliep et al. 2020). In considering whom to involve, consider the primary aim for mapping community assets (Schiffer 2007). If researchers intend to use the method primarily for research purposes, they must
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ensure that they recruit participants who are knowledgeable about the issues at hand (Schiffer 2007). They may consult a few local community leaders or stakeholders for suggestions on who should be involved (Taliep 2016). One may also consider doing a series of mapping workshops targeting different participants (e.g., community members, youth, leaders, stakeholders, and so on). A key step is to consider individuals or organizations who understand the community or experience the issues researchers want to address, ultimately ensuring the long-term success of the initiative (National Oceanic and Atmospheric Administration 2009). These include: institutional representatives (e.g., schools, library, police, hospitals, clinics, government departments), local economy (e.g., local vendors and businesses), specific populations relevant to their study objectives (e.g., school-aged children, school dropouts, unemployed youth/women/men, the elderly), formal and informal organizations, cultural or sports clubs, or other stakeholders that can play an important role in the mapping process. For example, if researchers want to start an adult education class, they will involve people who would require such classes, educational institutions, educators, retired teachers, school principals, the representatives from the Department of Education, local entrepreneurs, and business people who can fund the classes. The decision on sample size may be grounded in strategic considerations instead of saturation, but it is important to consider both perspectives when deciding on sample size (Schiffer 2007). While there is no set limit to the number of participants (Schiffer 2007), participants need to be representative of the community. So, researchers need to ensure that they are inclusive in their selection of participants (e.g., race, culture, gender, and age). To capture differences among a population, Appel et al. (2012) recommend involving participants from diverse backgrounds and experiences. Corbett (2009) emphasizes that more is better – the higher the level of participation by community members, the more useful and favorable the outcome since the final map will exhibit the collective knowledge and viewpoints of the group/s creating the map/s. Since participatory community-engaged asset mapping involves group activities, it is also important to ensure that the number of participants per mapping workshop is manageable. It helps to have co-facilitators to share in the different tasks, such as note-taking and managing multiple group activities. Co-facilitation also allows for diverse questions and deeper explorations (Appel et al. 2012).
4.3
Determining the Time and Resources Needed to Map Assets
Among the resources needed for mapping are money, time, and space, as well as mentorship and in-kind resources (Brown 2009). Determine the resources researchers already have available to implement the project, and what they still require (Brown 2009). The time they set out to do the mapping is very important. Notably, researchers do not want to set out too much time for a session so participants lose interest, but they have to take into account the context of the community they are working with. For example, if there are language barriers, they would need
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more time for interpretations, and explanations as well as talk slower. Researchers also have to consider the community’s norms, customs, and routines in terms of time. If a community tends to work with a particular cultural tendency to time, e.g., the inclination to a more relaxed outlook toward time, they have to consider starting at a convenient time and stopping at a convenient time. For example, if their community consists of school-going children’s stay-at-home parents, they have to consider whether they have to leave at a particular time to fetch children from preschool. The point being made is that researchers have to consider and work around the availability of their participants and be flexible in negotiating suitable times for the mapping workshop/s.
4.4
Establishing the Kind of Assets to Include
There are many diverse types of assets. These include individual, relational, collective, and physical assets, as well as associations and institutions. Table 1 below outlines some individual, relational, collective, physical, associations, and institutional assets. The issue researchers aim to address is directly linked to the type of skills, assets, or resources they should identify. For group assets, compile an inventory of groups, associations, institutions, and their assets that are an important part of community life and which can be mobilized for community building. Before conducting the mapping workshops, participants can be requested to do a transact walk through their community to help them visualize the assets for the mapping activities (Simons and Taliep 2018). During the exercise, participants can be requested to think about the tangible assets in their community (spaces, structures, people, and so on) and also about the intangible assets (respect, empathy, kindness, compassion, and so on) in their community. They can be asked to critically evaluate the focus of a proposed research objective, such as promoting community safety or developing an afterschool program, and how the assets they identified can be mobilized to address the issue of interest. Researchers may use existing sources of information such as local directories, local newspapers, recreational facilities, and centers to compile the inventory (Simons and Taliep 2018). Organize and update the list and add information on location, services offered, their existing resources, and legitimacy. For individual assets, researchers may consult key informants or stakeholders within the community or conduct a skills audit, which might be time consuming and costly.
4.5
Identifying Specific Methods for Mapping Assets
“A map does not just chart, it unlocks and formulates meaning; it forms bridges between here and there, between disparate ideas that we did not know were previously connected.” Reif Larsen, The Selected Works of T.S. Spivet
Relational assets Coalitions. Networks. Relationships. Partnerships. Friendships. Kinships. Group ties.
Collective assets Cultures. Traditions. Institutions. Norms. Stories. Collective experiences.
Physical assets Physical structures or places (e.g., library or soccer/rugby stadium). Land. Gardens. Picnic areas. Parks. Playgrounds. Bicycle paths. Campsites. Fishing spots.
Associations Community police forum. Neighborhood watch. Environmental groups. Elderly groups. Youth groups. Charitable groups. Special needs groups. Reading groups.
Institutions Government agencies. Schools. Universities. Colleges. Hospitals. Libraries. Nonprofits. Social service agencies. Museums. Fire department. Traffic department. Local businesses. Local economy. Churches, mosques, temples. Police department. Hospitals. Clinics.
Source: Adapted from Kretzmann and McKnight (2005). Discovering community power: A guide to mobilizing local assets and your organization’s capacity. Asset-based Community Development Institute, School of Education and Social Policy; Northwestern University
Individual assets Skills, gifts, and abilities, Talents and experience. Knowledge. Leadership. Capacities. Values. Experiences.
Table 1 Types of assets
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There are multiple ways of identifying assets, such as mapping assets on a street map, online mapping, doing a capacity inventory, gifts inventory, an interest checklist, Venn diagram, and so on. It often comprises of a diagrammatic visual presentation of assets and resources within a specific geographical location or among a specific community of interest but can also be used to depict relationships among stakeholders within a given geographic area. The method one decides to utilize would depend on participants, timeframes, available resources, and the specific aim that guides the mapping process. Mapping Assets on a Street Map To commence this activity, researchers can use an existing online map and print it (in communities that are not static, this may not work) or construct your own map. The first step entails locating the community by defining their community’s boundaries. Participants are normally divided into smaller groups of 5–6 and asked to draw a map or create a 3-dimensional map of their community that highlights boundaries, locations, and significant landmarks that are important to them and other community members. They will then share their maps with the larger group and engage in a facilitated discussion (Cutts et al. 2016; Taliep et al. 2020). Brain Storming
As indicated previously, there are many different types of assets; identify the type of assets that researchers need to access or mobilize to address a particular issue on which they are focusing. Link their purpose or aim with the type of assets they want to identify. Researchers may use brainstorming to identify assets and ranking to synthesize and prioritize the list of assets. 1. Ask each group to select a scribe. 2. Ask your question to the larger group. 3. In smaller groups: – Participants brainstorm answers to the question posed (building consensus). – Once the small group agrees on an asset, the scribe records it on post-it notes (one asset per note). 4. At the end of the activity, these notes are collected and pasted randomly on the wall. 5. This activity can be followed up by a ranking activity to identify the most important assets that are relevant to the research objective.
The general steps for mapping community assets on a street map outlined in Fig. 2 can be used too: Online mapping is the collation and publication of numerous websites that offer extensive graphical and text information consisting of maps and databases (Rouse 2019). The first online mapping facility was MapQuest, while currently, there are a number of other online mapping software that are provided by different internet
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Compile a list of assets and resources (group and individual)
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Place dot sckers on the locaons of groups and organizaons and colourcode resources according to type.
To map individuals, you can use numbers to indicate occupaon/skil l, etc.
Provide a summary of what your members see on the map
Fig. 2 General steps for mapping community assets. (Source: Adapted from UCLA Center for Health Policy Research. http://healthpolicy.ucla.edu/programs/health-data/trainings/documents/tw_ cba20.pdf)
companies and organizations, including Google Maps, Yahoo, ZeeMaps, and My Community. Free online mapping such as Google Maps (see Fig. 3 below) and Zee Maps can be used interactively by multiple users to plan, map, link, and add information about the assets in their community by simply clicking a few buttons. In participatory Geographic Information Systems (GIS), data relating to local knowledge and culture are integrated with the digital information provided by the GIS program to create data-intensive action plans for development. It consists essentially of compiling a list of assets available to a particular population (Weng 2016). By using mapping software such as GIS, the resources are then mapped out by location (Weng 2016). Alevizou et al. (2016) indicate that digital methods and geospatial apps are increasingly utilized to record, visualize, and analyze resources and assets. They note that in addition to providing insights about possibilities, alternatives, and solutions, practical, micro-applications of digital methods may generate wider understandings, perspectives, and perceptions. Although mobile apps and Google widgets make participation easier, questions regarding persisting socioeconomic digital divides, digital literacy, and access to digital devices continue to persist among certain groups in the use of such technologies (Alevizou et al. 2016). While GIS has the potential to produce rich information and augment the succeeding synthesis and analysis processes, the technical limitations of facilitators can engender inaccuracies and mistakes in analysis. For the results of these methods to be meaningful and actionable, the questions remain as to how more creative and ethnographic approaches to co-creation could be combined in order for users to make sense thereof in a meaningful and actionable way (Alevizou et al. 2016).
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Fig. 3 Example of online mapping
The ranking instrument can be used to map the concerns, beliefs, views, or priorities of a particular community (Appel et al. 2012). Participants are given writing material and requested to identify a particular number of pertinent factors/ issues/categories relating to the research objective. Questions can be formulated according to the key objective of the study (Taliep et al. 2020). Facilitators manage a process where participants rank the factors/issues/categories in terms of their relative importance, influence, and so on. The activity reveals the nuanced individual sentiments within the group, as well as the consensus within the group. Given that the act of ranking requires reflection and analysis, the exercise provokes group discussion. This exercise stimulates group discussion since ranking activities require reflection, analysis, and consensus (Appel et al. 2012). It is, thus, useful for exploring key concepts further. The Venn diagram can be utilized to record how information travels across a community. Participants talk about intercommunity and outside-community knowledge sources and their relative trustworthiness. Key individuals and institutions are located, together with the kinds of information they communicate. A Venn diagram can be utilized to rank the spheres of influence both from within a community as well as outside. Implementing the tool at any point in the project cycle is beneficial, but it is more beneficial to use it as a baseline. This tool allows facilitators to gain valuable qualitative insights into how sources are used and trusted, as well as how they
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interact. Results could be used to directly inform interventions about how best to deliver information to beneficiaries (Appel et al. 2012). Mapping relationships can be done using a Spidergram. A primary goal of an asset-based approach is to strengthen connections between institutions and locals within a community (Alevizou et al. 2016). Asset mapping approaches can be used to map and identify connections within the community, provide an overview of the assets and resources within the community and demonstrate how these can be linked to funding, access to assets, and joint planning of services (Alevizou et al. 2016). Spidergrams are useful to gain a picture of the “spaces between” the entities, the ties, networks, and links; to obtain a picture of the connections to wider institutions and facilities that play a role in the local health service provision; and to get data about important relationships that contribute to the success of health service delivery. A series of circles are drawn in a ring and a further ring of circles outside of that. The names of all organizations present are entered into the inner circles. Participants are asked to draw lines between their organization and other organizations using different colors to signify the strength of the relationships and those with whom they would like to have a relationship. Participants are also asked to add to the outer ring organizations that are not in the community but that are important to them and to make the connections to them as well (see Taliep et al. 2020). To map services provided by key organizations and service providers, a map can be constructed placing organizations geographically and designating service catchment areas to identify the key partners and networks that researchers have. Stakeholders can be asked to place the name of their organization in the box (see Fig. 4) and indicate by means of an arrow the direction of the relationship; then along the arrow write the nature of the relationship (e.g., mainly funding, information, shared activities, shared resources, and so on). This will increase a greater awareness of which organizations are present in the area and communities serviced and service gaps can also be identified. Timeline and Time-trend analyses can be done with service providers to obtain a deeper appreciation of the historical trends that have shaped the current contextual situation, a deeper appreciation of the social constraints in which the struggle for community building and transformation takes place, and an introduction to the “story” of the organizations present in the workshop, and thus a better appreciation of one another. Mapping may also include guided conversations around key objectives of the research. Through discussion and visual output, participatory mapping moves from data description to map-based representation, which facilitates local knowledge production (Corbett 2009). These conversations can be very useful for explaining why the map is shaped the way it is (Schiffer 2007) or for facilitating guided discussions on key objectives using the map/s. It is, thus, important to determine beforehand how comments and discussions related to the mapping will be recorded. Whenever possible, and with signed informed consent from participants, make sure to audio and photo record to ensure that details about mapping activities and process are retained (Appel et al. 2012). Since facilitating the drawing of the map/s will take up most of the facilitator’s time, it is recommended that either a second or third
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Fig. 4 Mapping template
person take notes, depending on the number of groups per workshop, and that the discussion be recorded (Schiffer 2007).
4.6
Making Sense of the Data and Planning the Way Forward
Once the mapping workshops have been completed, the different groups of participants will come together, review the findings from the mapping exercises, and collectively plan the next steps. The CAM process yields data including constructing/drawing the maps, brainstorming, guided or open discussions, and ranking exercises (Perumal et al. 2022). Besides frequency tables and ranking, Alevizou et al. (2016) note that the analysis of data in asset-based approaches is inclined to merge policy analyses with discourse and thematic analysis of the community generated data. They note that thematic analysis has been shown to be quite valuable to allow for critical reflection on how a community’s assets can be mapped and organized, and their capacities can be revealed. Similarly, they note that
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discourse analysis has been used to make sense of participant observation notes and conversations that were collected during the mapping process, to provide suggestions and ascertain gaps relating to conditions of power. The mapping process also includes documenting and collectively determining ways to mobilize the assets and resources mapped in order to attend to existing local community challenges (Perumal et al. 2022). This can be achieved through followup action planning workshops where all the data collected in the mapping workshop/ s are triangulated and presented to the participants and they collectively plan the way forward (Taliep et al. 2020).
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Conclusion and Future Directions
Community asset mapping is a novel method of intentionally and creatively identifying individual, relational, collective, institutional, and physical assets and resources in a community, and creating maps to visually depict these assets and resources. While focusing on assets does not exclude needs analysis, participatory community-engaged asset mapping approaches emphasize and foreground the multiple assets, skills, resources, and strengths within communities, which can play a key role in reenvisioning communities as potentially abounding in assets, ultimately bringing about positive community transformation. The physical map created also serves as a valuable resource for future programs or interventions in the community. Since marginalized communities face multiple competing everyday difficulties, a key challenge in the mapping process involves maintaining the focus on assets as opposed to deficits and on specific solutions as opposed to tackling multiple challenges at the same time. Within the current global social and health crises people are facing, it can be surmized that there will be a rapid increase in the numbers of marginalized and vulnerable people. Global political agendas and proxy wars as well as the ramifications of the COVID-19 pandemic presents extraordinary challenges to public health, employment, levels of poverty, and food security. CAM provides an innovative method for practitioners and academics in Global Public Health to tap into local tangible and intangible resources and to find innovative ways of how these can be leveraged to address emerging challenges (Taliep et al. 2022). Acknowledgments We would like to acknowledge Ms. Seneca Louw for offering up her time to read through the chapter and provide valuable feedback.
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Astaburuaga J, Martin ME, Leszczynski A, Gaillard JC (2022) Maps, volunteered geographic information (VGI) and the spatio-discursive construction of nature. Digit Geogr Soc 3: 100029. https://doi.org/10.1016/j.diggeo.2022.100029 Beaulieu LJ (2002) Mapping the assets of your community: a key component for building local capacity. Southern Rural Development Center. http://srdc.msstate.edu/publications/227/227_ asset_mapping.pdf Bergdall TD (2012) Facilitating asset based community development. In: Timsina T, Neupane D (eds) Changing lives, changing society: ICA’s experience in Nepal and in the world. ICA Nepal, Kathmandu Bergold J, Thomas S (2012) Participatory research methods: a methodological approach in motion. Hist Soc Res/Historische Sozialforschung:191–222 Brown E (2009) Mapped: a youth community mapping tool for Vancouver. The City of Vancouver and The International Centre for Sustainable Cities Burns JC, Paul DP, Paz SR (2012) Participatory asset mapping: a community research lab toolkit. Advancement Project – Healthy City https://communityscience.com/wp-content/uploads/2021/ 04/AssetMappingToolkit.pdf Chambers R (2006) Participatory mapping and geographic information systems: whose map? Who is empowered and who is disempowered? Who gains and who loses? Electron J Inform Syst Dev Countries 25:1e11 Cochrane L, Corbett J (2020) Participatory mapping. In: Handbook of communication for development and social change. Springer, Singapore, pp 705–713 Cochrane JR, Taliep N, Lazarus S, McGaughey D, Christie D, Seedat M, Cutts T, Gunderson G (2022) “Spiritual capacities” in psychological research: confronting the appearances. Social and Health Sciences. https://unisapressjournals.co.za/index.php/SaHS/article/view/10423 Corbett J (2009) Good practices in participatory mapping. International Fund for Agricultural Development (IFAD), Rome Corbett J, Rambaldi G, Kyem P, Weiner D, Olson R, Muchemi J, McCall M, Chambers R (2006) Overview: mapping for change – the emergence of a new practice. https://opendocs.ids.ac.uk/ opendocs/bitstream/handle/20.500.12413/330/rc54.pdf?sequence¼1 Crozier M, Melchior F (2013) Perspectives in adult education—asset mapping: a course assignment and community assessment. New Horiz Adult Educ Hum Resour Dev 25(3):125–129 Cutts T, Olivier J, Lazarus S, Taliep N, Cochrane JR, Seedat M, van Reenen R, Hendricks C, Carelse H (2016) Community asset mapping for violence prevention: a comparison of views in Erijaville, South Africa and Memphis, USA. Afr Saf Promot J 14(1) https://www.ajol.info/ index.php/asp/article/view/147998 Dorling D (1998) Human cartography: when it is good to map. Environ Plan 30:277–288 Duncan D (2016) Asset mapping toolkit. Clear Impact https://resources.depaul.edu/abcd-institute/ resources/Documents/D.%20Duncan%20Asset%20Mapping%20Toolkit%20Eight%20Steps% 20to%20Increase%20Residential%20Engagement.pdfAsset Edney MH (2019) Cartography: the ideal and its history. The University of Chicago Press Fang ML, Woolrych R, Sixsmith J, Canham S, Battersby L, Sixsmith A (2016) Place-making with older persons: establishing sense-of-place through participatory community mapping workshops. Soc Sci Med 168:223–229 Foot J, Hopkins T (2010) A glass half-full: how an asset-based approach can improve community health and well-being. Improvement and Development Agency (IDeA). http://bankofideas.com. au/Downloads/GlassHalfFull.pdf Gilchrist A (2009) The well-connected community: a networking approach to community development, 2nd edn. The Policy Press Graham R (2017) Participatory asset mapping and community development: the case of educational leaders at John P. Parker elementary. Unpublished doctoral dissertation). University of Cincinatti Griffin D, Farris A (2010) School counselors and collaboration: finding resources through community asset mapping. Prof Sch Couns 13:248–256
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Kramer S, Seedat M, Lazarus S, Suffla S (2011) A critical review of instruments assessing characteristics of community. S Afr J Psychol 41(4):503–516 Kramer S, Amos T, Lazarus, Seedat M (2012) The philosophical assumption, utility and challenges of asset mapping approaches to community engagement. J Psychol Afr 22(4):537–546 Kretzmann JP (2010) Asset-based strategies for building resilient communities. In: Reich JW, Zautra A, Hall JS (eds) Handbook of adult resilience. Guilford Press Kretzmann JP, McKnight JL (1993) Building communities from the inside out: a path toward finding and mobilizing a community’s assets. Institute for Policy Research Kretzmann JP, McKnight JL (1997) A guide to capacity inventories: mobilizing the community skills of local residents. ACTA Publications Kretzmann J, McKnight J (2005) Discovering community power: a guide to mobilizing local assets and your organization’s capacity. Asset-based Community Development Institute, School of Education and Social Policy; Northwestern University Lazarus S, Duran B, Caldwell L, Bulbulia S (2012) Public health research and action: reflections on challenges and possibilities of community-based participatory research. In: Maddock J (ed) Public health – social and behavioral health. InTech, Rijeka, pp 309–324 Lazarus S, Naidoo AV, May B, Williams L, Demas G, Filander FJ (2014) Lessons learnt from a community based participatory research project in a South African rural context. S Afr J Psychol 44(2):149–161. https://doi.org/10.1177/0081246314528156sap.sagepub.com Lazarus S, Taliep N, Naidoo A (2017) Community asset mapping as a critical participatory research method. In: Seedat M, Suffla S, Christie D (eds) Community, liberation and public engagement. Springer, pp 45–59 Lightfoot E, McCleary JS, Lum T (2014) Asset mapping as a research tool for community-based participatory research in social work. Soc Work Res 38(1):59–64. https://doi.org/10.1093/swr/ svu001 Mathie A, Cunningham G (2002) From clients to citizens: asset-based community development as a strategy for community-driven development. Dev Pract 13(5):474–484 McKnight JL, Kretzman JP (1996) Mapping community capacity. Institute for Policy Research chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://naaee.org/sites/default/files/map ping-community-capacity.pdf National Oceanic and Atmospheric Administration. (2009) Stakeholder engagement strategies for participatory mapping. Social science tool for coastal programs. https://coast.noaa.gov/data/ digitalcoast/pdf/participatory-mapping.pdf Nelson S (2019) Participatory mapping for community engagement and empowerment. https:// sophia-nelson.weebly.com/uploads/1/2/4/9/124900888/finalwriteup__1_.pdf Ngunjiri E (1998) Participatory methodologies: Double-edged swords. Development in practice 8(4):466–470. Panek J (2015) How participatory mapping can drive community empowerment – acase study of Koffiekraal, South Africa. South Afr Geogr J 97(1):18–30. https://doi.org/10.1080/03736245. 2014.924866 Perumal J, Taliep N, Olujuwon T, Moyo Z (2022) Pursuing fully integrated mixed methods research: the case of SCRATCHMAPS. In: Hitchcock J, Onwuegbuzie T (eds) Routledge handbook for advancing integration in mixed methods research. Routledge, pp 501–523 Rouse M (2019) Online mapping. https://whatis.techtarget.com/definition/online-mapping Schiffer E (2007, May 1–6) Net-map toolbox: influence mapping of social networks. International food policy research institute. Presented at the sunbelt conference of the international network of social network analysis, Corfu, Greece Shahid M, Vaska M, Turing TC (2019) Asset mapping as a tool for identifying resources in community health: a methodological overview. J Biomed Anal 2(1):13–25. https://doi.org/10. 30577/jba.2019.v2n1.22 Simons A, Taliep N (2018) Participatory research and action planning. In: Taliep N, Lazarus S, Bulbulia S, Ismail G, Hornsby N (eds) Ukuphepha: manual on community engaged violence
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Photovoice A Method for Community-Led Social Change Nick Malherbe, Shahnaaz Suffla, Mohamed Seedat, and Umesh Bawa
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Photovoice and the Problem of Change-Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 The Multi-Country Photovoice Project and Social Change: Challenges and Prospects . . . 3.1 Change-Making Successes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 The Challenge of Change-Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Although there are many ways that the Photovoice method can be used, it essentially entails providing cameras and basic photography training to participants who are, themselves, usually from marginalized backgrounds. After taking photographs on a particular topic, the goal is for participants to use these photographs in processes of conscientization that, in turn, inform social change processes, oftentimes in collaboration with policymakers. Photovoice is, therefore, a community-engaged method whose success is not determined by its fidelity to a rigid set of implementation criteria, but rather by its ability to foster social change initiatives that are grounded in the experiences and knowledge of participants. Awareness must always inform and result in action. As with most community-engaged work though, Photovoice presents a host of challenges with respect to generating sustainable, community-led social change. This chapter N. Malherbe (*) · S. Suffla · M. Seedat Institute for Social and Health Sciences, University of South Africa, Lenasia, South Africa South African Medical Research Council, University of South Africa Masculinity and Health Research Unit, Cape Town, South Africa e-mail: [email protected]; suffl[email protected]; [email protected] U. Bawa Department of Psychology, University of the Western Cape, Cape Town, South Africa e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_59
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illustrates some of these challenges by examining the Multi-country Photovoice Project, wherein young people from six African countries used Photovoice to explore and intervene in issues of safety and unsafety in their respective communities. It considers the tangible – and immaterial – changes that resulted from this project and the difficulties that participants faced in this regard. It concludes by reflecting on the future directions for community-engaged work that seeks to use Photovoice to engender community-led social change that speaks to a range of public health issues. Keywords
Photovoice · Social change · Community engagement · Africa · Policy
1
Introduction
Developed in the 1990s as a community development tool, the Photovoice method sees the provision of cameras – and sometimes also basic photography training – to participants, usually from socially marginalized communities, who use these cameras to take photographs of pertinent community concerns, or “photo theme” (Wang and Burris 1997). Participants then attribute captions to their photographs to create what are known as photo-stories (Kessi 2011). Participants then discuss their photostories, sometimes individually but usually with other participants. Within these discussions – which are usually facilitated by practitioners (Hergenrather et al. 2009; Suffla et al. 2015) – participants’ photo-stories offer multiple, fragmented, and even contradictory attempts to grapple with the complexities of and differences in how reality is experienced (Wang 2006). Following this, participants typically host public exhibitions of their photographs (see Dafilou et al. 2022). These exhibitions strive to catalyze changes around the photo theme. As such, it is crucial that policymakers and other influential change-makers are invited to these exhibitions (Derr and Simons 2020). We can, in short, understand the goals of Photovoice as those outlined by Wang and Burris (1997) in their original paper on the method: (1) to facilitate space for participants to record and reflect on their community’s strengths and challenges; (2) to promote critical dialogue and knowledge around various community issues; (3) to catalyze change by reaching policymakers. Photo-stories, as they are used within participants’ discussions and at the exhibitions, should not be understood as inherently progressive or “correct.” They function as a medium through which to gaze at the world – our own and those around us – by making connections between these worlds, all while bringing into question how meaning is ascribed (Kessi 2011). It is by discussing their photostories that participants and others are able to work together to grapple with the community concerns under question, expanding upon knowledge and understanding of these concerns and connecting them with broader societal structures (Malherbe et al. 2017). This is what the Brazilian educator Paulo Freire (1970) refers to as consciousness-raising.
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Photovoice endeavors to provide a platform for those knowledges that tend not to be considered in policy discussions. Indeed, those who are most affected by an issue are oftentimes not included in decision-making around this issue (Foster-Fishman et al. 2005). Yet, these marginalized voices possess important understandings that have been attained from direct experience (Malherbe et al. 2017). By engaging participants not only as experts on their experience but also as key change agents and legitimate knowledge producers, the Photovoice method seeks to offer alternative or under-considered narratives of the community (Kessi 2011; Wang and Burris 1997). It is in this approach to knowledge and change-making that we can see the three theoretical tenets of Photovoice in operation, namely: feminist theory, Freirean critical pedagogy, and documentary photography (see Liebenberg 2018; Strack et al. 2022). Within Photovoice projects, then, participants, practitioners, and other community members work together as critical commentators to catalyze change (Suffla et al. 2012). Of course, change and change-making can denote negative or destructive social change. Throughout this chapter, though, the authors use the terms social change and/or change-making to refer to socially just changes articulated and actioned by Photovoice participants in collaboration with various influential partners. As such, change-making can certainly refer to policy change, but it can also mean changes that are directly implemented by Photovoice participants in their communities. There are always unequal dynamics of power that structure the relations between the different Photovoice partners working toward change-making. Practitioners generally have greater access to material resources than participants, not to mention the ease and familiarity that practitioners tend to have with respect to the knowledgemaking enterprise, an enterprise over which they are oftentimes assumed to have de facto expertise (Malherbe et al. 2017). Therefore, to ensure that the method retains a critical edge, one that calls into question unequal power dynamics, Photovoice practitioners are cautioned to exercise critical reflexivity, making clear and reflecting upon how power is exercised in Photovoice projects, and how best to work with participants to ensure that they exercise ownership and autonomy within the project (Evans-Agnew and Rosemberg 2016; Lykes and Scheib 2015; Suffla et al. 2015). Its emphasis on nonhierarchical collaboration, local knowledge-making, and social change is what renders Photovoice a participatory action research method (Wang 2006), one that has become tremendously popular in recent years (Strack et al. 2022). Initially conceived as a tool for health promotion (Wang and Burris 1997), Photovoice is well suited to public health research. By involving people in their treatment, rather than having treatment imposed on them from above, Photovoice has the potential to offer insights into developing a participatory model for public health inquiry. In using Photovoice, people can draw from their own experiences and knowledge to articulate what their health needs are, and in this, they are able to transform public health practices and research foci. Additionally, Photovoice can generate visual knowledge within public health research. It is because visual knowledge is, by and large, under-considered within the social and health sciences (see
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Banks and Zeitlyn 2015) that Photovoice has the potential to illuminate and provide new perspectives on various health concerns from the perspectives of those for whom these concerns are most prescient. The visual may also facilitate a degree of comfort among participants, offering to them a creative, relevant, and generative means of self-expression. Photovoice has been used to explore a range of public health concerns, including violence (Chonody et al. 2013), pain experiences (Baker and Wang 2006), prostate cancer (Oliffe and Bottorff 2007), HIV and AIDS (Teti et al. 2012), and obesity (Findholt et al. 2011). Yet, no matter the topic, the overarching goal of Photovoice is to generate local knowledge on a particular issue through a collaborative partnership between participants and practitioners, and to use this knowledge to address this issue; to affect meaningful change (Strack et al. 2010). Consciousness-raising must, in other words, form part of a process of change-making. However, and in contradistinction to the original aims of Photovoice (Wang and Burris 1997), many Photovoice projects are unclear or vague about change-making (Johnston 2016). Other projects entirely omit assessments of change-making (Seitz and Orsini 2022), concluding the project at the exhibition stage (Dafilou et al. 2022). Although there are several challenges inherent to, and critiques leveled at, Photovoice (see e.g., Prins 2010), in this chapter, the authors seek to grapple with the change-making capacities of Photovoice research which, despite being so central to the method’s original conception, appear to have dropped out of many recent Photovoice projects. In what follows, the chapter offers a brief overview of some reviews of the Photovoice literature, drawing attention to what has been found in relation to the change-making capacities of the method, and how such capacities are reported on if indeed they are reported on at all. In order to flesh out these issues, it then reflects on a cross-national Photovoice project with which the authors were involved. The chapter explores some of the project’s successes with respect to change-making and policy change, and what this means for Photovoice public health projects more generally. It concludes with recommendations for future work, emphasizing the importance of social change within and beyond Photovoice projects.
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Photovoice and the Problem of Change-Making
It is crucial that Photovoice participants do not just identify societal problems, but that they do so in an effort to determine the most appropriate course of action to address these problems (Wang and Burris 1997). We do well to remember that taking photographs and discussing them is not in and of itself emancipatory (Derr and Simons 2020). However, as noted earlier, for many Photovoice projects, policy and change outcomes remain, by and large, vague (Johnston 2016). Strack et al. (2022) note that while some Photovoice projects may, indeed, advocate for social change, this has become just one way of using Photovoice. Photovoice work, they posit, can also center on individualized change, community assessment, and/or capacity building, with social change either relegated to a subsidiary concern, an ideal but optional outcome, or is entirely omitted from the project (see also Malherbe et al. 2017). The
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authors wish to insist that although community assessment and capacity building are important to Photovoice work, they should always come out of, rather than serve as alternatives to, social change. Photovoice cannot end at the exhibition or discussion phase (see Dafilou et al. 2022). Rather, these phases should serve as a “bridge to action” and should thus be taken very seriously by practitioners, participants, and other community members (see Teti and Myroniuk 2022). Over the years, there have several reviews published on Photovoice literature (e.g., meta-syntheses, systematic reviews, scoping reviews). Such reviews have consistently found that within Photovoice projects, there has been a lack of meaningful engagement with the public or policymakers (e.g., Han and Oliffe 2016). In the reviews undertaken by Coemans et al. (2019) and Derr and Simons (2020), for instance, it was found that Photovoice oftentimes seeks to raise awareness in lieu of implementing change. None of the Photovoice studies examined by Hergenrather et al. (2009) mentioned program or policy change, while 35% of the Photovoice studies examined by Catalani and Minkler (2010) did not engage with social action. Sanon et al. (2014) similarly found that only seven of the 30 Photovoice studies that they examined mentioned social justice or inequality. In their scoping review of Photovoice studies on the environment, sustainability, and conservation, Derr and Simons (2020) observed that only half of these studies mentioned policy change. They also found that Photovoice studies, on the whole, rarely reflected on how effective they were with respect to tangible social change. This same point was confirmed by Seitz and Orsini’s (2022) recent “review of reviews” (see also Coemans et al. 2019). The general vagueness and, at times, outright refusal to consider social change within Photovoice projects make it difficult to assess the method’s change-making capacities (Catalani and Minkler 2010). When Photovoice turns away from a commitment to social change, it risks building up participants’ hopes and creating unrealistic expectations, only to let them down (Johnston 2016). Moreover, Photovoice practitioners oftentimes commit to large-scale change when the method tends to be more suited to local or small-scale change-making (Suffla et al. 2012). As such, many Photovoice practitioners draw on progressive rhetoric that positions Photovoice as a stand-in or surrogate for long-term interventions (see Liebenberg 2018). Added to this, when Photovoice practitioners do engage with change-making and social action, they often make participants solely responsible for such change (Johnston 2016). In other words, those most affected by an issue and who know it best are burdened with the task of addressing it, without considering the role that policymakers, political leaders, and grassroots activists have here. This can and has led to those participating in Photovoice projects feeling dissatisfied and overwhelmed (see Zuch et al. 2013). In light of all of this, it is crucial that those involved in Photovoice projects (participants, outsiders, policymakers, and others) remain attuned to the imperative of changemaking, and to do so in a reflexive manner that is sensitive to possibilities, contextual barriers, and power differentials. It can be speculated on the reasons that Photovoice practitioners, by and large, do not report on social change and policy influence within their work. The first, and perhaps most obvious, reason is that such work simply has no transformative
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outcomes to report. Indeed, policymakers tend to require considerable data to persuade them that change is necessary, data that Photovoice cannot, by itself, always provide (Hergenrather et al. 2009). There seems to be little incentive to define, determine, and assess transformative outcomes on the basis of standards set by the participants themselves. It is also possible that the pressure to publish sees Photovoice practitioners publishing articles before any meaningful change has been observed (Powers and Freedman 2012). Social change, in addition to being exceptionally challenging to enact in a meaningful way, is also difficult to track (Malherbe et al. 2017), and oftentimes requires the kinds of long-term engagements that Photovoice cannot facilitate (Strack et al. 2010). Nonetheless, there are many Photovoice studies that have implemented social and policy change. As such, Dafilou et al. (2022) have recently called for the kind of Photovoice project that envisions “action beyond the exhibition.” This, they maintain, can be – and indeed has been – achieved with careful planning, goal setting, and participants’ involvement in each stage of the project. Such action does not, however, come easily. Photovoice practitioners are, along with participants, compelled to grapple with the difficult, but nonetheless fundamental, facets of change-making in their work.
3
The Multi-Country Photovoice Project and Social Change: Challenges and Prospects
The Multi-country Photovoice Project was a longitudinal study initiated in 2011. It was formed through a partnership between the University of South Africa’s (Unisa) Institute for Social Health Sciences and its South African Medical Research CouncilUnisa Violence, Injury and Peace Research Unit (which is now the Masculinity and Health Research Unit). The study sought to platform how young people from six African countries – South Africa, Mozambique, Zambia, Uganda, Ethiopia, and Egypt – understood safety in their respective communities. The youth participants were invited to take photographs of things, places, and people that, to them, represented safety and unsafety. In each country, a photographic exhibition was held where participants’ photo-stories were showcased and celebrated. Local stakeholders and community leaders were invited to these exhibitions, and it was, thus, at the exhibitions that participants discussed social change; how it could be catalyzed and planned for. Thus, within the exhibition spaces, young people were able to develop partnerships with adults. Within these partnerships, the participants assumed leadership in all resulting community campaigns, change-making initiatives, and policy discussions. As such, the Multi-country Photovoice Project sought to privilege youth voices within safety implementation processes that are typically adultcentric (Malherbe et al. 2017; Suffla et al. 2015). Three years after the project’s initial conception, all of the youth participants convened in South Africa to participate in Unisa’s annual Research and Innovation Week (RIW) wherein various pertinent social issues are discussed across a range of academic disciplines. The three events on which the young people took the lead at the RIW were (1) a conference on safety where they discussed what safety and
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unsafety mean in their respective communities, and what action they had taken to address specific safety concerns; (2) a launch of the book My Voice in Pictures: African Children’s Vision of Safety (Suffla et al. 2014) that showcased their various photo-stories; and (3) an exhibition of their photo-stories at the Unisa Art Gallery (see Malherbe et al. 2017 for more details on the RIW events with which the participants were involved). It is because research spaces such as the RIW are usually adult-led that the participants’ involvement in these events can be understood as a kind of insurgent knowledge-making intervention. In the final leg of the Multi-country Photovoice Project, which occurred 3 years after Unisa’s RIW, the participants convened in South Africa for a colloquium wherein they offered several retrospective reflections on the project. Working together, they spoke about what constructing and presenting their photo-stories meant to them; the struggles they experienced in attempting to use their photostories to affect policy and implement social change; and the mixture of pride, alienation, disappointment, and confidence that they felt at different stages of the project (see Malherbe et al. 2017 for more detail here). In what follows, the authors draw from their experience in the Multi-country Photovoice Project to reflect on some of the successes and challenges that face those seeking to prioritize change-making within Photovoice work. Their primary focus is, therefore, not change-making as it was envisioned and enacted within this specific project. Rather, the authors look to this project to grapple with the complexities of change-making inherent to the Photovoice method more generally.
3.1
Change-Making Successes
While not every young person who participated in the Multi-country Photovoice Project became involved in change-making activities, many of them did use the interactional platforms availed by the project to catalyze change in their communities. Although space constraints prevent disallow considering in detail each of the change-making initiatives with which participants became involved, the authors consider below some of the most striking of these. Once again, the authors do not do so with the intention of evaluating these initiatives, but to examine what changemaking, as it was enacted in this Photovoice project, can tell them about changemaking processes in Photovoice projects more generally. Those participating in the Egyptian leg of the project became involved in several change-making initiatives (see Malherbe et al. 2018 for more details here). One of the reasons for such fervent change-making activity may have been due to the broader processes of change that were engulfing the country at the time (the project took place a few months after Egypt’s January 25 Revolution). After participants discussed their photo-stories with one another as well as with local project partners, they identified the following key areas as the most pertinent safety concerns in their community: litter, maintenance of public infrastructure, construction of amenities, and improved security. As such, the youth participants established a community organization that they named Protecting the Homeland, Safety, the Future. Those
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involved in organization activities worked together to speak out against the kinds of dangers encountered by young people in their community and to build working relationships with State authorities to address the identified safety concerns. Other participants expressed that they wished to forge collaborative partnerships with medical professionals so that they could meaningfully address the public health concerns that were depicted in their photo-stories. Therefore, participants invited medical students to an exhibition of their photo-stories in an effort to forge working relationships with these students. This partnership resulted in another Photovoice project concerning health and safety that was led by the youth participants. Lastly, to address the issue of litter, one of the participants initiated the Recycling Art Toy Project, which hosted workshops on how to transform garbage into toys for children. Through this initiative, recycling bins were installed in several local schools. In the Mozambican leg of the project, participants worked with government personnel to implement several material changes at the level of the community. This was due to the fact that several high-profile policymakers attended the exhibition of participants’ photo-stories. Two of the key changes that occurred as a result of participants’ partnerships with policymakers were the demolition of abandoned buildings that participants had identified as unsafe, and the installation of streetlights in the areas where community members were regularly attacked after sunset. Finally, because so many of the participants’ photo-stories depicted large quantities of trash in the community, a litter-cleaning campaign was initiated wherein over 100 widowed women were employed by the State to assist in removing litter from the community. Throughout the other four countries, there were several smaller change-making initiatives with which participants became involved. In Uganda, for example, participants set up safety clubs that provided an inclusive space for young people within which safety initiatives could be conceptualized, planned, and actioned. These participants also established food gardens in the community in an effort to tackle food insecurity. Participants from Zambia and South Africa also set up youth groups in their communities and schools, where young people could discuss and mobilize around pertinent safety concerns. Across the six African countries, young people used their photo-stories to inform and even catalyze different change-making initiatives. These initiatives were organized either among the participants themselves or in collaboration with policymakers, activists, and/or community leaders. While it cannot be denied that when participants partnered with others – especially policymakers – the changes that were enacted were large-scale and structural, it should be noted that when the young people organized change-making among themselves, they were able to exercise greater autonomy, leadership, and control over decision-making. All of this should be considered carefully when planning for change in Photovoice projects. Indeed, the kinds of changes that participants pursue must be reflected in the path that they take to bring about such change. Change-making within the Multi-country Photovoice Project did not occur spontaneously. Rather, the young people who participated in the project worked hard to establish connections, set up community projects, and organize community
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campaigns. There was, in other words, a conscious effort to use the insights from the project to inform activist efforts, rather than assume that such efforts would automatically result once these insights were reached. Planning was, therefore, central to how participants’ knowledge-making was taken up and used to inform social action. In this sense, the project was willed beyond itself in that social change was envisioned and actioned beyond the project parameters. Finally, it was important for the young people that the changes they envisioned and later enacted were broadly appealing. Whether they worked among themselves or in collaboration with others, the issues that they sought to address affected everyone in their communities (see Malherbe et al. 2018). This ensured that collaboration networks and avenues for solidarity were open-ended and attractive to all in the community. Moreover, the change-making initiatives were often expansive and appealing enough for other community groups to lend their support and get involved; seeing their own struggles reflected in those articulated by the young participants. In this, participants did not set their sights on a parochial set of “youth issues,” but rather on a broad-based and continually evolving set of community concerns.
3.2
The Challenge of Change-Making
Photovoice’s capacity to bring marginalized voices into conversations from which they are typically excluded is important. There is, however, a risk that Photovoice projects stop here, and do not adequately use the insights of these voices to inform social action (Derr and Simons 2020). This is not necessarily from a lack of effort. In the Multi-country Photovoice Project, the frustration of translating voice into action was encapsulated by one participant who noted that “we only talk about it [community problems] but we can’t do so much” (Malherbe et al. 2017, p. 172). Even those who had managed to enact changes in their community appeared somewhat frustrated, hemmed in by Photovoice’s inherently localized scope. As one participant put it, “I cried because of the work I can do and still have to do” (Malherbe et al. 2017, p. 173). There are also challenges of sustainability when considering change-making within Photovoice projects. For instance, in the Multi-country Photovoice Project, many of the participants from Uganda noted that sustaining their safety clubs and securing support for their community gardens was challenging and oftentimes not possible. This meant that many of these initiatives were short-lived. A similar problem was noted among participants from Zambia and South Africa who had set up youth groups in their schools and communities. In a series of follow-up discussions with participants from Mozambique several years after their initial participation in the Multi-country Photovoice Project, it became clear that very few were still in contact with one another. Additionally, most were unaware of whether the changemaking actions in which they had been so pivotal in the initial stages of the project and in which they had initially been so emotionally invested, were continuing. A similar situation was observed among the participants from South Africa, many of
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whom noted that in growing up, the need for employment had become a greater priority than community activism. This is not to say that activism was no longer present in the lives of participants, but rather that for most of them activism had become an increasingly diminished part of their lives. Those participating in the Multi-country Photovoice Project were not, it is believed, given false hope. However, the enthusiasm of the participants may, in some instances, have created the impression that such work would resonate with people from their communities who were not involved in the project from its inception. Indeed, many of the participants noted that people in their communities were antagonistic to the kinds of activist concerns that had preoccupied them in the wake of the project and that they struggled to appeal their activism to project outsiders. There were, in other words, participants who struggled with the fact that the urgency of the community issues that they were addressing was not always recognized by those outside of the project. Other participants expressed frustrations at being unable to enjoin their activist efforts with existing activism taking place in and beyond their community. In short, participants were unable to move and expand their change-making efforts. Finally, the change-making capacities of the Multi-country Photovoice Project were constrained in many ways by the particular sociopolitical contexts in which they occurred. This was perhaps most clear in places like post-revolutionary Egypt; however, contextual influences also influenced change-making in the other countries. In Mozambique, for example, an unanticipated change in local government meant that the State became less receptive to the participants’ advocacy efforts, meaning that there was less uptake of these efforts at the governmental level. This has the effect of diminishing morale among participants. In other countries, a kind of political opportunism was noted, where politicians and policymakers would interact with the young people in a very open and public way, acknowledging their efforts and recognizing what they had to say as important, yet doing very little on a practical, material level to assist them in their advocacy. Photovoice projects are unlikely to produce dramatic societal change (Derr and Simons 2020). They tend to confine themselves to short-term change-making (Liebenberg 2018). The change-making that occurred because of the Multi-country Photovoice Project was certainly significant; however, many of the participants were dissatisfied with the fact that such change-making was not, in every instance, sustainable in the long term. This is a frustration that many adult activists also face. As noted above, it is important that the kinds of change-making initiatives that occur within and beyond the boundaries of Photovoice projects are planned carefully (see Dafilou et al. 2022). Within such planning processes, participants must decide among themselves whether their change-making activities are to be short term or longitudinal. If indeed, they plan for long-term action, further planning must take place with respect to sustainability, which should include establishing robust communication networks between all of the social change actors. Those who undertake Photovoice projects are compelled to strike a delicate balance when discussing change-making with participants, one that anticipates the kinds of frustrations and setbacks that participants will inevitably encounter, all
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while sustaining the sort of energy and enthusiasm that Photovoice so often engenders within participants. Moreover, not every aspect of a project can be planned for or anticipated. Room must be made for the unexpected. Change-making activities should be as adaptable as possible. Finally, Photovoice projects should not denigrate short-term achievements; however, it must be made clear which activities will be enacted over the short term, which will be carried out over the long term, and how smaller changes can pave the way for larger, more substantial change.
4
Conclusion and Future Directions
Although collective change-making was central to the early conceptions of Photovoice (Wang and Burris 1997), this is not always the case today, with many contemporary Photovoice practitioners concerning themselves primarily with centering marginalized voices, catalyzing individual change, capacity building, and/or assessing available community assets (Strack et al. 2022). It is not the authors’ intention in this chapter to denigrate these sorts of concerns but to emphasize that such concerns tend to be engaged most meaningfully by participants when they form part of a collective, socially embedded process of change-making. Change must be taken up, actioned, and not merely spoken about as a mythological imperative (Derr and Simons 2020). There are, of course, myriad challenges that we encounter when Photovoice is geared toward change-making; however, it is these challenges that should be grappled with in a nuanced fashion if Photovoice is to be utilized for transformative ends. By looking at the Multi-country Photovoice Project as a case example, the authors have sought to demonstrate in this chapter how, within Photovoice projects, change-making can occur among participants or in collaboration with policymakers. However, no matter the kind of change-making partnership into which participants enter, or the route that they take to enact change, it is crucial that they work together to carefully plan their change-making initiatives in accordance with the aims of these initiatives. The point here is to allow for setbacks without diminishing hope and enthusiasm; to anticipate the unexpected within planning procedures; to decide whether change-making is to be enacted over the short or long term; to render change-making efforts as broadly appealing as possible; to establish robust communication networks between participants; and to consider how change can be sustained and enacted beyond the boundaries of a Photovoice project. In short, the authors are in agreement with Seitz and Orsini (2022) who insist that the effectiveness of change-making within Photovoice work should be subject to evaluation and that such change should be carefully planned and participantcentered. Change-making should not be allowed to fall out from Photovoice projects. It should, indeed, be the nucleus of these projects against which all other effects and consequences of a project are assessed. In this, researchers can work to ensure that Photovoice projects are oriented toward grappling with the kinds of concerns that are fundamental to participatory action research.
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Walking Interviewing Method Sarah Day and Josephine Cornell
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 The Benefits of Walking Interviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Walking Interviews in Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 How to Conduct Walking Interviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Ethical Considerations for Walking Interviews . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusions and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Studies of public health, space, and place are imperative for understanding how complex contextual factors may impact health. Located within the “mobilities turn,” mobile research methods, such as the walking interview, allow researchers to study spatial practices in situ and engender a more direct (co)production of knowledge between the researcher and participant. This method acts as a bridge between two data collection methods, participant observations, and interviews, allowing the researcher to experience the texture of life in movement. Walking interviews involve following participants on their journeys with a specific focus on mobility, both in its physicality and in its theoretical underpinnings. That is, walking interviews examine factors that allow for, hinder or complicate movement, how movement is felt and thought about, and how individuals inhabit mobility. Walking interviews conducted with participants in movement through S. Day (*) Division of Social and Behavioural Sciences, School of Public Health, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa e-mail: [email protected] J. Cornell Department of Psychology, School of Social Sciences, Birmingham City University, Birmingham, UK e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_60
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space, rather than sitting down, stationary “in place,” can become “three-way dialogues,” involving not only the interviewee and interviewer but also the environment through which the interviews meander. This chapter reflects on the walking interview method as a tool for public health research that has the potential to explore public health issues and practices within the material and spatial local specificities. The chapter argues that knowledge generated through walking interviews may elucidate contextual barriers or facilitators of public health intervention effectiveness. Keywords
Walking interviews · Go-along interviews · Public health · Mobilities turn · Health · Space · Place
1
Introduction
In seeking to understand the complex contextual factors that impact health, it is vital for public health researchers and practitioners to consider the role of place and space within global public health research. In contrast to stationary forms of data collection, which have typically dominated social science and public health research, walking interviews involve following participants on a journey with a specific focus on mobility, both in its physicality and in its theoretical underpinnings (Novoa 2015). That is, walking interviews permit researchers to analyze what allows for, hinders, or complicates movement, how movement is felt and thought about, and how individuals inhabit mobility (Novoa 2015). This method allows researchers to explore participants’ perceptions of their environment, their spatial practices, biographies, their social architecture, and their social realms (Kusenbach 2003). Furthermore, walking interviews act as a bridge between participant observation and interviews, and accesses participants’ spatial practices in situ (Kusenbach 2003). Indeed, walking interviews allow the researcher to experience the texture of life in movement (Novoa 2015) – that is, the researcher is “walked through” the lived reality of the participant (Carpiano 2009). Accompanied by the social and cultural “turn” in the social sciences (Evans and Hall 1999; Kearns and Moon 2002), researchers have been increasingly interested in the “everyday.” Additionally, the establishment of health geography elevated the concept of “place” as having distinct characteristics (Curtis 2004), which impact health (Thompson and Reynolds 2019). Falling within what has been termed the “mobilities paradigm” (Novoa 2015; Sheller and Urry 2006), mobile research such as walking interviews may allow researchers to explore participants’ experiences and perspectives in context and engender more direct (co)production of knowledge between the researcher and participant (Holton and Riley 2014). The “mobilities paradigm” emphasizes the fluidity of society and contends that “mobilities” influence social systems, institutions, and relations, such as health, work, and politics (O’Neill and Roberts 2020; Sheller and Urry 2006). As such, mobile interviews may
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capture the fluidity of societal dynamics in a way that stationary research cannot. Walking interviews are underpinned by the assumption that “we have changing sensual, cognitive, and relational feelings; complex social and environmental relations; and a conviction that social research methods have not always fully taken account of the diversity, depth, and shifting character of social life” (O’Neill and Roberts 2020, p. 17). Walking interviews have long been an established method within the discipline of geography and ethnographic research, and in recent years have been growing in popularity as a method of data collection within the social sciences (Clark and Emmel 2010a, b; Kinney 2017, 2021; O’Neill and Roberts 2020). The walking interview may take many forms, but typically encompasses the researcher accompanying a participant on foot (although not always, see Parent 2016) while recording the interview (Evans and Jones 2011; Kinney 2017; O’Neill and Roberts 2020). Depending on the research aims, the location and route direction may be decided by the researcher or by the participant, and may follow a set structure and predetermined route, or unfold as the interview progresses (Evans and Jones 2011; Kinney 2017). This chapter reflects on the walking interview method as a tool for public health research that has the potential to explore public health issues and practices within the material and spatial local specificities. It is argued that knowledge generated through walking interviews may elucidate contextual barriers or facilitators of public health intervention effectiveness. In the following sections, the chapter contextualizes walking interviews within public health, offers an overview of the method of doing walking interviews, and provides some discussion on the ethical considerations of walking interviews.
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The Benefits of Walking Interviews
Mobile ethnography combines two of the main data collection methods of ethnographic research: participant observation and informal interviews (Brown and Durrheim 2009; Kusenbach 2003). Walking interviews merge the strength of both methods and compensates for their limitations, offering some of the contextual insights of traditional ethnographic methods without the need for long-term, intense fieldwork (Carpiano 2009). Thus, walking interviews are useful when an in-depth, contextualized and nuanced understanding of a research topic is required but time and resources are limited (Carpiano 2009). A key advantage of walking interviews is the insight they can offer into participants’ relationships with the places they occupy and their embodied everyday practices within their own environments (Clark and Emmel 2010a, b; Evans and Jones 2011; O’Neill and Roberts 2020). The method enables participants to show researchers the spaces they are interested in, rather than attempting to describe them (Clark and Emmel 2010b). This can be useful as space can often be mimetically unrepresentable, requiring innovative techniques for documenting spatial experience (Beyes and Michels 2014; Massey 2005). As Clark and Emmel (2010a, p. 2) suggest, “placing events, stories and experiences in their spatial context can help
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participants to articulate their thoughts.” Walking interviews, for example, can be particularly useful for providing an in-depth account of “the embodied experience of disability” (Butler and Derrett 2014, p. 3). Indeed, there are varied experiences of walking and moving through space, which may also be captured through mobile methods (Parent 2016). Parent (2016, p. 524) asserts that many wheelchair users, for example, may describe their movement in space as “walking” and “wheeling can be thought of as a mobile practice falling under the umbrella that covers a variety of walking practices.” Walking interviews may offer a number of advantages over stationary research in terms of offering nuanced understandings of the experiences of people with disabilities (Butler and Derrett 2014; Parent 2016). Butler and Derrett (2014, p. 7) suggest that walking interviews “make the body present” in ways that stationary research does not. That is, health research can create embodied understandings of health, place, and space. In the second author’s own research, for example, which explored university students’ experiences of belonging and exclusion in campus space, it was impossible to capture the experience of students who were wheelchair users in sufficient depth through a focus group alone. Walking interviews were necessary to adequately convey the extensive detailed knowledge of micro-materialities of campus space necessary for students to negotiate university space daily as wheelchair users (Cornell 2021; Cornell et al. 2021). During a walking interview, the environment can act as a prompt, changing the course of the interview direction or topic of discussion (Emmel and Clark 2011; Dubé et al. 2014). As such, walking interviews can become “three-way dialogues,” involving not only the interviewee and interviewer but also the environment through which the interview meanders (Hall 2009). Place and space are under discussion but beyond this also “underfoot and all around, and. . .that much more of an active, present participant in the conversation” (Hall 2009, p. 582). This may be in the form of unanticipated encounters with other people in the area but it may also include interruptions from the space itself, such as the need to pause to cross the road, a blocked pathway, or shelter from the rain (Dubé et al. 2014). The unpredictability and variability of the environment may elicit discussions or introduce topics within the interview that may not necessarily have emerged in a stationary interview (Emmel and Clark 2011). Walking interviews may also present a number of benefits in terms of developing rapport between researchers and participants, in comparison to sedentary interviews (Kinney 2017). Kinney (2017) suggests that walking interviews may offer a less pressurized environment for vulnerable participants who may be suspicious or uncomfortable around authority figures such as interviewers or struggle with some forms of direct communication. This is particularly relevant when drawing on walking interviews with more vulnerable populations in public health research. Indeed, talking can often be easier when in motion, allowing for natural breaks in conversation that might be more awkward in seated interviews and allowing the participant time to gather their thoughts (see Kinney 2017). Dubé et al. (2014) also highlight how participant-driven walking interviews in particular can be less disruptive to busy participants as they can be scheduled to fit within their everyday routines. In some instances, the researcher may be able to accompany the participant as they move through their existing daily schedule.
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Walking Interviews in Public Health
It is important to understand how place and space are embedded within people’s health and well-being (Carpiano 2009). There has been an increased interest in the use of qualitative methods in public health, as these methods examine health and place as they offer more nuanced, richer accounts of people’s lived experiences (Carpiano 2009; Dennis et al. 2009; Liamputtong 2020; Matthews et al. 2006; Morrow 2001). Interest in qualitative methods is embedded in a need to develop a post-positivist, evidence-based body of scholarship drawing on a variety of theories and methods for understanding the nexus between place and health (Carpiano and Daley 2006a, b; Carpiano 2008). Context can be understood as a relational perspective on place and space (Carpiano 2009). Traditionally, research has been contextualized through descriptions of place, setting and context, and researcher observations (Garcia et al. 2012). Researchers have included participants in the contextualization of qualitative research through mapping techniques and reflective journaling (Garcia et al. 2012). Walking interviews go beyond this type of contextualization and physically bring space into the research process in real time (Garcia et al. 2012). Walking interviews, as a novel qualitative methodology, can be used to explore the complex ways in which space shapes health (Carpiano 2009). Specifically, walking interviews can be used to understand and attend to aspects of local social, cultural, and historical contexts and how they relate to health (Altschuler et al. 2004; Carpiano 2009; Cattell 2001) in ways which traditional quantitative methods, such as surveys, are incapable of measuring (e.g., Frohlich et al. 2001). Furthermore, walking interviews can be employed to inductively develop and refine theories related to public health that are locally specific and embedded within the lived experiences of people who inhabit these contexts (see Airey 2003; Cummins et al. 2007). Walking interviews open up possibilities to embed understandings of health within neighborhoods and their surrounding areas – that is, people move in and out of space within an “action area” and these spaces impact how individuals and communities experience (or do not experience) health and well-being (Cummins et al. 2007). Despite the potential of walking interviews for public health, there have been limited studies that have employed walking interviews to study public, population, and community health (Carpiano 2009). However, there have been a number of notable studies that have explored the intersection between health, space, and place. Lynch (1964), one of the first public health researchers to use walking interviews, examined how residents of three US cities interpreted environmental images during their daily activities. Some of the participants in those studies walked with researchers along routes determined by the participant through the city before sitting down for a traditional interview. During the walking interview, the participant was asked how they chose the route, what they viewed on the walk, and whether they felt confident or lost during the walk. Later, Kozol (2012) explored the experiences of children who were impoverished and living in the South Bronx of New York City. Using a walking interview, Kozol (2012) was able to investigate how children interpret and navigate their social and physical landscape, including how they navigate hazards such as litter, drug activity, and violence. As evidenced from this
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study, walking interviews offer public health researchers an opportunity to explore not only how context influences health, but also how individuals and communities actively shape, interpret, and interact with their social and physical landscape. Kusenbach (2003) used walking interviews to study how residents living in neighborhoods in Hollywood, California perceive and interact with local issues. Kusenbach (2003) noted that walking interviews are a useful tool to explore how participants’ knowledge and perception inform their everyday experiences. Indeed, the walking interview accesses participants’ spatial practices in situ and provides a link between lived reality, health, and space (Kusenbach 2003). That is, the study explored the social architecture of settings – namely, relationships between people and how participants situate themselves in space. Kusenbach’s (2003) study is an important contribution to the walking interview as it is one of the first studies that outlined the method and the contribution of walking interviews in detail. Carpiano (2009) examined social capital in two predominantly African American neighborhoods in Milwaukee, Wisconsin. The two neighborhoods were socioeconomically diverse – one neighborhood was of low socioeconomic status and the other was of high socioeconomic status. Using the walking interview method, Carpiano (2009) was able to explore what participants identified as neighborhoodbased resources, how participants access to these resources is facilitated or restricted, and the role of network-based resource in residents’ health and well-being. The content of the walking interviews in Carpiano’s (2009) study was focused on the local physical and socioeconomic challenges, such as crime, city tax policies, gentrification, and housing maintenance and repairs, which impacted individual and collective health and well-being. This study also explored how social capital was employed to address these problems. Miaux et al. (2010) studied pedestrians’ experiences in urban settings using walking interview methods and used the study to bring together pedestrians and urban planners to make cities more walkable. This utility of walking interviews allows public health researchers and practitioners to not only collect data on how place, space, and health intersect, but also mobilize the findings to generate policy and urban design change to better facilitate individual and community health. Indeed, the integration of walking interviews allowed urban designers to capture the complexities of pedestrians moving through space and provide the public health sector and community organizations with sufficient information to develop environments that promote health (Miaux et al. 2010). Garcia et al. (2012) used walking interviews to explore college students’ perceptions of sexual health. They noted that sedentary interviews may not be appropriate for gathering information about sexual health as participants may be reluctant to speak openly. Conversely, walking interviews offer participants a space for collaborative participation and are generative of openness (Anderson 2004; Carpiano 2009). Garcia et al. (2012) reflected that walking interviews were a useful tool in examining a sensitive topic as participants were perceived to be more open with the researchers and the environment could be used as a prompt to facilitate conversation. Brannellya and Bartlett (2020) stated that research about people with dementia needs to be participatory. However, traditional methods, which pressure participants
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to recall events and may require a heavy cognitive load, are not suitable for people with cognitive disabilities, such as dementia. Their research demonstrated that walking interviews prompted the conversation, and enabled participants with dementia to take the lead in the research process. In traditional interviews, people with cognitive disabilities may be more reticent. The process of walking, as a central aspect of human experience, allowed researchers to understand the everyday lives and experiences of people with dementia as the participants could account for past and present experiences related to place (Brannellya and Bartlett 2020). Kinney (2021) explored how walking interviews may be an important tool for doing research with people who experience severe mental illness. As opposed to traditional methods, walking interviews offer an opportunity to locate individuals within their communities. Through drawing on walking interviews, Kinney (2021) was able to explore how people with severe mental illness are able to relate to or are alienated from their community. She then further explored the utility of walking interviews for vulnerable populations. Although Kinney (2021) noted that walking interviews is a novel research approach and its utility is still being explored for use in public health, the method proved to be useful for doing research with participants with mental illness. Indeed, the methodology allows researchers to examine how participants connect (or do not) with their community; how they interact with space and place while walking; and allows the opportunity for an unanticipated event to occur, which may guide the interview in an interesting and important direction. Using walking interviews, Day (2021) explored how marginalized women accessed state-controlled institutions, such as healthcare, post-violence care institutions, and the criminal justice system. Through examining how participants occupy and navigate space, Day (2021) explored how state-controlled institutions, which are mandated to look after the health and well-being of the general population, act to (re)perpetrate inequality through everyday violence, by keeping participants routinely in waiting, lost files and information, violated, redacted, and abused in anonymous public spaces, which speaks to collective invisibility of the participants. Within this research, walking interviews allowed the researcher to traverse the obscure, costly, repetitive, and unjust pathways between the participants’ homes and state-controlled spaces. Indeed, walking interviews highlighted how encounters with state-controlled institutions act to maintain division across lines of gender and race by shifting the participants to the margins by limiting access to resources such as healthcare, police services, and the juridical system. This study also examined how participants engage with state-controlled institutions to reshape and reinterpret them. That is, walking interviews were a useful tool to examine how participants resist, rewrite, and navigate these spaces. According to Murphy (2022, p. 219), walking interviews are an important biographical tool that examines the nexus between “personal concerns and public questions.” Murphy used walking interviews to explore the ethics of sex work research, allyship, and education. Walking interviews allowed her to reimagine a society where sex workers are afforded full citizenship within multiple spheres of being. Evident from this research, walking interviews not only allow us to explore
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how place, space, and health intersect, but also how space can be reimagined to promote an inclusive health system at multiple levels of society. The above studies demonstrate that walking interviews provide important contextual information about how people experience their spaces and how space impacts health and well-being, and the role place and space play in individual and collective health (Carpiano 2009). Walking interviews allow public health researchers to assess features and processes of local area contexts, develop more nuanced theories of place and health that are embedded within the lived experience of participants, and generate a strong evidence base for the scientific exploration of the nexus between place and health. Furthermore, walking interviews, as a participatory approach, embed the researcher in the community and the community in the research (Carpiano 2009). As demonstrated from the above studies, walking interviews can be a useful tool to access the spatial and embodied experiences of vulnerable populations as they relate to key concerns within public health. Despite this, walking interviews have been underutilized in public health research in the global south.
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How to Conduct Walking Interviews
Walking interviews are a highly flexible approach that can be adapted to the needs of the particular project (Carpiano 2009). Similar to sedentary interviews, the walking interview method can draw on different interviewing formats (Carpiano 2009; Kinney 2017). The walking interview can take a preset approach (such as using semi-structured questions and following a preplanned route) or emergent (which involves open-ended questions, comments, and discussions arising throughout an unplanned walk) or can be a post-event written participant account (O’Neill and Roberts 2020). Participants may stop and “dwell” at a particular site (O’Neill and Roberts 2020). Walking interviews can be walk-along, which is conducted while walking with the participant, ride-along, which is conducted while driving, and mixed form which is conducted using a combination of both modalities (Kusenbach 2003). However, the walking interview can disrupt conventional modalities of interviewing (Brown and Durrheim 2009; Thompson and Reynolds 2019). That is space and surrounding situations at least partially direct the interview beyond the interviewer’s questions. The semi-structured interview is potentially more conversational in nature and uses both prepared and impromptu questions. The researcher brings along with them an idea of the basic topics that need to be covered during the interview. This approach can be useful to fill gaps and guide the direction of the conversation. The researcher may want to carry a pen and notepad with them to remind them of any particular questions (Kinney 2017). The open-ended interview provides participants with little direction for the scope of the interview and/or only occasionally talk about features present in the environment. The open-ended walking interview requires the researcher to be a skilled interviewer. The selection of which method to use depends on the neighborhood context, the needs of the participants, and/or the needs of the
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research (Carpiano 2009). For both the semi-structured and open-ended walking interview, it is important to use the surrounding environmental features as prompts to embed the interview within its socio-spatial context as there is a risk a walking interview turns into a social visit (Finlay and Bowman 2017). Kinney (2021) differentiates three kinds of walking interviews. First, the go-along interview, which combines interviews with participant observation, follows the participant as they go about their usual routine (Kusenbach 2003). That is, even if the researcher were not to accompany the participant on their route, the journey would still happen. However, “unusual walks” – where participants go on walks that are not a usual route – can also yield valuable insights as the action of walking allows for an investigation of how participants connect and disconnect from their environment, and allowed for an examination of place (Hein et al. 2008; Kinney 2021). However, Kusenbach (2003) cautions that these types of walking interviews are contrived because the researcher interrupts how participants interact with their environment. The bimbling interview was the second walking interview identified by Kinney (2021). Bimbling, which Evans (1998) has described as going for a walk with no particular aim to release emotional tension, has been used when doing walking interviews with environmental activists (Anderson 2004; Hein et al. 2008). The bimbling interview allows researchers to walk with participants away from a physical site of tension and stress, such as a protest site (Anderson 2004). Anderson (2004) argues that by allowing participants to walk aimlessly in a neutral space, they are able to reconnect with the environment that they are fighting to protect and cite the reasons for how and why they are engaging in civil action. Furthermore, walking aimlessly can prompt life-course memories. The core difference for this type of walking interview is that the route is not known by the participant or the researcher – in fact, the route is unimportant (Kinney 2021). In fact, it is the act of walking that allows the participant to recollect experiences related to the topic being discussed (Anderson 2004; Moles 2008). The third type of walking interview is a participatory walking interview, which can be used to explore a participant’s sense of place and neighborhood attachment (Clark and Emmel 2010b). In this walking interview, the participant chooses a route within their familiar neighborhood (Clark and Emmel 2010b) – that is, the participant chooses the particular route on which to take the researcher; the length of the interview; and what the participant wishes to show the researcher (Clark and Emmel 2010a). A predetermined list of questions can be prepared by the interviewer and it may be useful to use a camera to capture the route (Clark and Emmel 2010b). Walking interviews can be used alone or may be successfully combined with other forms of data collection, such as traditional research methods, participatory action research methodologies and neighborhood mapping approaches (Carpiano 2009; O’Neill and Roberts 2020). Each stage of the walking interview can also be done in conjunction with other methods or actions, such as drawings done by the participant and/or the researcher; audio; photography; videography; internet resources; informal map drawing; or formal maps (O’Neill and Roberts 2020), which combines methods across the social sciences and arts. Photographs should
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be taken by the participant or at the direction of the participant in cases where they cannot be taken by the participant (Kinney 2021). Additionally, the photograph should always be explained by the participant (Carpiano 2009). Researchers are also increasingly making use of technology such as GIS mapping and GPS recording to plot the interview data, and produce interactive maps of the interviews (see Evans and Jones 2011). This method may also be used within different theoretical frameworks. Kinney (2021) suggests, for example, that walking interviews have relevance to both constructivist and subjectivist epistemologies. Participants in the walking interview are required to be in motion, either following an ordinary route or a research-specific walk (O’Neill and Roberts 2020). One important decision is whether the route is set by the researcher or the participant (Evans and Jones 2011). If the walking interview follows a set route provided by the researcher, the data collection can be tailored to the specific needs of the project and can deliberately explore particular routes or buildings (Jones et al. 2008). However, following a preset route may make the participant go into a space beyond their usual routine (Evans and Jones 2011). Indeed, Kusenbach (2003) argued that while contrived go-along may generate interesting data, they would not be useful to enhance our understanding of the authentic spatial practices of the participant. Instead, Kusenbach (2003) states that natural go-along is more useful to follow participants on journeys they would be taking anyway, thereby enhancing the authenticity of the data collection. It is important that the participant is able to guide the researcher through spaces so that they can be seen and understood within their local context (Carpiano 2009). Mobile interviews are an unfamiliar research method for many participants, and some participants may need additional guidance. However, it is important to balance between guiding and being overly prescriptive as to instructions and geographic boundaries and lose the participant’s individuality (Finlay and Bowman 2017). The time of day is an important methodological consideration (Finlay and Bowman 2017). As O’Neill and Roberts (2020) point out, the particularities of a walk and a participant’s experience of it are different every time it is undertaken, no matter if the route is the same. A walking interview captures a moment in time of someone’s daily routine and these routines differ according to the time of day or the day of the week. In addition to the changing physical environment, the participant’s mental and physical state also changes. Time is an important consideration when examining space and place, and shapes how people experience a place through expanding and contracting boundaries of being located in time. Finlay and Bowman (2017) state that it is important to conduct different walking interviews at various times of the day. However, it is necessary for researchers to consider the implications for the time of interview and safety when planning walking interviews. The time of day, changing weather, and alterations to the physical space, for example, can vastly alter the data produced within that particular interview encounter (O’Neill and Roberts 2020). Walking interviews can be impacted by physical disruptions – such as meeting an acquaintance or friend along the route, unexpected features of the place, and weather – which can change the trajectory of the walking interview (Thompson and Reynolds 2019). That is, through these physical disruptions, either the topic of the interview or the direction of the walk can be changed. Disruptions are important as they offer an
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analytic opportunity to understand how participants relate to both physical and social space (Thompson and Reynolds 2019). In addition to physical disruptions, Thompson and Reynolds (2019) demonstrated that walking interviews may offer the researcher an opportunity to illuminate inconsistencies in conversation, gaps between what is said and what is done, and how narrative and context align. Walking interviews can be recorded in multiple ways, such as audio recordings on a digital device, paper-based notes taken at the time or later, video recordings that take into account not only what is heard but also what is seen (O’Neill and Roberts 2020), and photography (Clark and Emmel 2010a). A combination of different recording methods can yield a textured and nuanced picture of how place and health are interrelated. Some researchers choose not to video record as they wanted to prevent the participants from feeling self-conscious or uncomfortable (Clark and Emmel 2010). Furthermore, researchers also need to think through who will be doing the video recording and how that will shape the data produced from the walking interview. This can help public health professionals understand the knowledge-action gap as it related to health and place. A good quality audio recorder, with a wind guard, is an essential data collection material needed for walking interviews (Clark and Emmel 2010a; Kinney 2021). The type of recorder chosen can depend on a number of factors, such as finances, the researcher’s preference for the visibility of the recorder, the location of the interview, and who will hold the recorder. Some researchers recommend a lapel mic. Due to the nature of a walking interview, the researcher should anticipate that some of the audio will be impossible to hear and transcribe due to traffic noise, wind, and passers-by (Clark and Emmel 2010a). Therefore, it is important to make detailed notes after the walking interview and/or transcribe them soon after the completion of the interview. A second recording device may also mitigate some of these challenges (Clark and Emmel 2010a). Additionally, the researcher should record the route taken, either with technology, such as Strava or Google Maps, or a street map (Kinney 2021). A helpful process during the walking interview would be to include notes on specific locations and geographic identifiers (Finlay and Bowman 2017). When transcribing the interview, the text should be linked back to the route (Clark and Emmel 2010a). That is, the transcriptions should also provide sufficient information about the environment, including the names of places, street names, and institutions encountered or discussed (Clark and Emmel 2010a). Some researchers annotate their transcripts with the features of the environment, the approximate location along the route, and the point at which any photography, drawings, or videos were taken (Clark and Emmel 2010a). This process of transcription that embeds the spatial features of the interview into the transcript is a time-consuming process that researchers must allot for (Clark and Emmel 2010a).
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Ethical Considerations for Walking Interviews
In light of the dynamic and unpredictable nature of walking interviews, there are a number of key ethical issues to consider, which may differ somewhat from traditional, stationary research. For a start, it is typically difficult to ensure participants’
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confidentiality as the interviews occur in public space (Clark and Emmel 2010a; Dubé et al. 2014; Kinney 2017, 2021). The participants may be seen by others in the presence of the interviewer, revealing that are participating in a research study. Additionally, parts of the interview discussion may be overheard by passers-by or participants may encounter people they know who are curious about the research study (Clark and Emmel 2010a; Kinney 2017, 2021). These difficulties with confidentiality should be made explicitly clear to participants during the informed consent process, and may in some instances, as other research has illustrated, impact individuals’ decisions around participation (Clark and Emmel 2010a). This is particularly important for walking interviews conducted in contexts in which participants may face risk or censure for their participation in research studies; or in which the research interview may be misinterpreted (Carpiano 2009; Finlay and Bowman 2017). As Carpiano (2009) suggests, if participants are observed walking around and pointing to things within their environment, they may be misunderstood by others as reporting illegal activities and may consequently face repercussions. In some cases, walking interviews may not be appropriate for particularly sensitive topics, especially when the environment is densely populated, and others are likely to overhear the discussion (Kinney 2021). Although it may disrupt the flow of the interview, questions around particularly sensitive topics may be best kept for quieter sections of the walk. In some instances, participants may be happy to engage with others that they encounter – be it people they know or strangers – during the walking interview process. In this case, the confidentiality and consent of others are important to consider (Clark and Emmel 2010a, b; Finlay and Bowman 2017). Informed consent should be obtained from other people who are recorded during the interview process and participants should be reminded that their conversations with others are being recorded (Finlay and Bowman 2017). Discussions around this and how to proceed with encounters with other people during the interview process should also be discussed beforehand with participants (Kinney 2021). Perhaps more so than with stationary interviews, which occur in a more easily controlled environment, the comfort and safety of both the participants and interviewers should be carefully considered. Walking interviews can be physically and mentally challenging, which is often overlooked in the ethical considerations of research studies (O’Neill and Roberts 2020). Finlay and Bowman (2017), for example, describe how they regularly checked on the physical comfort of their participants to confirm they were not fatigued, and that they ensured that their interviewers’ locations could be tracked through their cell phones during the interview process. They also highlight the importance of wearing appropriate clothing and bringing refreshments if needed. Although it is impossible to predict and plan for every discomfort or risk that may occur, clear procedures should be determined prior to the walking interview to safeguard the participants’ and interviewers’ comfort and safety (Finlay and Bowman 2017). Physical safety can also hinder movement in walking interviews. In cases where physical safety is of great concern, other methods, such as community mapping on paper, may be better utilized to ensure the safety of both participants and
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interviewers. The topic under investigation, time of day, and community safety would all be essential elements to consider when deciding on choosing walking interviews and logistics around conducting interviews. Establishing a relationship with community leaders and gatekeepers is an essential step in community-based research. Liaising with community stakeholders and/or recruiting interviewers from the local community would be important considerations to mitigate safety concerns. Ultimately, the level of risk and particular nuances of ethics will differ with the nature of the topic and the specifics of the environment. In the second authors’ research, for example, confidentiality was less of a concern as the study involved ethnographic work with students on a university campus. The interviewer – who was a Ph.D. student at the time – conducted walking interviews with other students. Thus, to most outside observers the interviews appeared to be nothing more than a conversation between students on campus, particularly when the recording device was held unobtrusively (Cornell 2021). However, the interviewer took care to ensure that any particularly sensitive questions or discussions took place while moving around areas of campus that were empty of other people. When in close proximity to others, such as in lifts, for example – the interviewer paused the interview discussion. In the first author’s study (Day 2021), on the other hand, confidentiality was more complicated. As the interviewer was physically seen with the participants during the mobile-ethnography component of the study and with the participants in different physical spaces, she could not assure confidentiality. As a white woman walking in a predominantly black, low-income community, it was foreseeable that her engagement with the selected women sometimes identified them as research participants. Indeed, van den Hoonaard (2003) notes that ethnographic research within small communities poses a challenge to anonymity and the community is often well aware of the researcher’s movements and interactions within the community. As such, the interviewer noted the ways in which community members engaged with the participants and themself as they walked through the community. However, predominantly, the participants were engaged with other community members in various different manners for walking with a white woman (not necessarily a researcher). These engagements varied from well-humored, suspicious, scornful, and curious to welcoming. It is important to note that the particular community in which this research was conducted is saturated with outsiders, providing various forms of community engagement, from research to health provision. The presence of strangers within the community, therefore, is not unusual. Furthermore, the participants were involved in other research and community-engaged activities at the interviewer’s place of work. As such, other researchers within the organization and the community members on the campus would have recognized that the participants were taking part in the research. This note cautions that confidentiality needs to be carefully thought about in the context of walking interviews. However, solutions to such are not straightforward. Ongoing conversations about how the participants experience walking with the researcher are necessary for ethical conduct.
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Conclusions and Future Directions
The walking interview method is an innovative and important tool for public health research that has the potential to explore public health issues and practices within the material and spatial local specificities (Carpiano 2009; Garcia et al. 2012). That is, walking interviews offer an important methodological means to examine how place, space, health, and well-being intersect (Carpiano 2009; Thompson and Reynolds 2019). Walking interviews allow for environmental factors to interject, prompt, and generate conversation on how participants relate, connect, and disconnect from the place (Garcia et al. 2012; Kinney 2021). The above literature demonstrates that the knowledge generated through walking interviews may elucidate contextual barriers or facilitators of public health intervention effectiveness (Garcia et al. 2012). Furthermore, if used successfully, walking interviews can go beyond merely generating theory and knowledge on the intersection between place, space, and health, but can also facilitate changes at policy and structural levels (Garcia et al. 2012). Indeed, walking interviews can be used to advocate for structural changes to physical spaces, as seen in the study by Miaux et al. (2010). Walking interviews are a very flexible method, and can be open-ended or semistructured, depending on the needs of the research (Kusenbach 2003). External cues provide important prompts to ensure the continuous and spontaneous flow of conversation (Kinney 2021). Three types of walking interviews were identified: the go-along interview, bimbling interview, and the participatory walking interview (Anderson 2004; Hein et al. 2008; Kinney 2021; Kusenbach 2003). Each of these interview types offers researchers a novel and innovative approach to research that examines the nexus between space, place, and health. Additionally, the walking interview can be used in conjunction with other methods and data collection tools (Carpiano 2009). The addition of other tools, such as photography, video recording, audio recording, and mapping, can enrich the data generated through the walking interview. Carpiano (2009) argues that the walking interviews disrupt power imbalances inherent to the research process. That is, marginalized participants are able to direct the researcher to what they perceive as important and should be shared with the interviewer. Furthermore, walking interviews have the potential to center participant voices (Kinney 2021). Furthermore, Brannellya and Bartlett (2020) argue that through walking and talking this method enables researchers to build rapport and equitable relations, and open up spaces for participants who are predominantly deemed as “incapable” to participate and have agency. However, walking interviews are not without ethical concerns. Firstly, confidentiality is impossible to ensure due to the potential for researchers and participants to bump into acquaintances, friends, and colleagues along the route (Thompson and Reynolds 2019). Indeed, it is imperative to inform participants of this risk prior to participating in a walking interview. It is important for the researcher to take the lead of the participant if and when they bump into someone known to them. Overall, walking interviews offer public health professionals an innovative opportunity to explore the nexus between place, space, health, and well-being.
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The public health system globally continues to face a backlog of challenges, such as insufficient funding, pervasive health inequalities, a global pandemic, and preventable chronic disease epidemics (Bett et al. 2021) – all of which will impact individuals and communities experiences of future public health issues. Public health matters cannot be dislocated from their social and spatial context. Walking interviews are a useful method for examining the nexus between health, place, and space for future health and social crises. That is, it is an important tool to map the inherent complexity of the public health landscape.
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Moles K (2008) A walk in third space: place, methods and walking. Sociol Res Online 13(4):2 Morrow V (2001) Using qualitative methods to elicit young people's perspectives on their environments: some ideas for community health initiatives. Health Educ Res 16(3):255–268 Murphy, D. (2022) Novoa A (2015) Mobile ethnography: emergence, techniques and its importance to geography. Hum Geogr J Stud Res Hum Geogr 9(1):97–107. https://doi.org/10.5719/hgeo.2015.91.7 O’Neill M, Roberts B (2020) Walking methods: research on the move. Routledge Parent L (2016) The wheeling interview: mobile methods and disability. Mobilities 11(4):521–532. https://doi.org/10.1080/17450101.2016.1211820 Sheller M, Urry J (2006) The new mobilities paradigm. Environ Plan A 38(2):207–226. https://doi. org/10.1068/a37268 Thompson C, Reynolds J (2019) Reflections on the go-along: how “disruptions” can illuminate the relationships of health, place and practice. Geogr J 185:156–167. https://doi.org/10.1111/geoj. 12285 Van den Hoonaard WC (2003) Is anonymity an artifact in ethnographic research? J Acad Ethics 1(2):141–151
Digital Storytelling Public Health Storytelling as a Method and Tool for Empathy, Equity, and Social Change Alice Fiddian-Green, Aline Gubrium, and Amy Hill
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Digital Storytelling and Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Critical Narrative Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Theoretical Frameworks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Digital Storytelling Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Components of the Digital Storytelling Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Adaptations for Online and Under-Resourced Settings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Data Collection and Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Ethical Framework and Considerations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Ethical Guidelines for the Research Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Ethical Framework . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Four Applications of DST for Global Public Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Public health storytelling (PHS) refers to community-engaged storytelling methods that critically examine public health issues and seek to identify A. Fiddian-Green (*) School of Nursing and Health Professions, Health Professions Department, University of San Francisco, San Francisco, CA, USA e-mail: afi[email protected] A. Gubrium School of Public Health and Health Sciences, Department of Health Promotion and Policy, University of Massachusetts Amherst, Amherst, MA, USA e-mail: [email protected] A. Hill StoryCenter, Berkeley, CA, USA e-mail: [email protected] © This is a U.S. Government work and not under copyright protection in the U.S.; foreign copyright protection may apply 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_61
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sustainable and systemic solutions to health inequalities. For participatory and critical researchers, PHS methods offer a powerful array of tools to engage myriad stakeholders in producing and consuming knowledge about the social world. Digital storytelling (DST) is a PHS method used in global public health research and practice to instigate empathy, equity, and collective social change. In this chapter, the authors draw from their collective experience using digital storytelling in the USA, Ghana, and, Nepal to advocate for reproductive rights and justice. This chapter outlines the theoretical foundations of DST and describes the method, including suggested adaptations for online and under-resourced settings. This chapter additionally outlines an ethical framework for DST and concludes by identifying four critical applications of DST for global public health. It is the hope and intent of the authors that this chapter provides inspiration and a roadmap for public scholarship and research activism. Keywords
Public health storytelling · Digital storytelling · Critical narrative intervention · Qualitative methods · Visual methods · Community-engaged research · Community-based participatory research
1
Introduction
The first quarter of the twenty-first century is nearing its conclusion fundamentally altered by a global pandemic (COVID-19) and marked by political and social division. In a few short years, individuals have witnessed a global rise in nationalism, economic and environmental instability, and a conservative attack on fundamental policies that have historically preserved human rights (i.e., rollback of voting rights, increase of gun owner rights, the US Supreme Court ruling to overturn Roe vs. Wade, and anti-LGBTQ+ policies). It is no surprise that these events are coupled with widespread and collective social suffering and trauma, evidenced by glaring global health and social inequities. The call for public scholarship and research activism is, therefore, strong. One can argue that this current world order needs love to be central to public health practice. Public health storytelling is one of the pivotal vehicles for “passionate politics” (hooks 2000) and for promoting equity and affecting social change. Digital storytelling is a method of public health storytelling that is a powerful tool for global public health practice that can instigate empathy and collective social action. Storytelling and health are closely linked (Charon 2006; Harter et al. 2005; McCall et al. 2021; Yamasaki et al. 2016). Public health storytelling (PHS) refers to community-engaged storytelling methods that examine public health issues and seek to identify sustainable and systemic solutions to health inequalities. Public health storytelling methods center participant voice and first-person narratives. Examples of PHS methods include photovoice; digital storytelling; testimoninos;
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graphic novels; comics; and participatory theater, film, and mapping (Fiddian-Green and Gubrium 2021; Gubrium and Harper 2013; Gubrium et al. 2016a, b, c, d). PHS methods expand the forms and sources of information that can inform social science research and create new possibilities for data analysis and research communication. For participatory and critical researchers, they offer a powerful array of tools for stakeholder engagement in producing and consuming knowledge about the social world. Digital storytelling (DST) is a critical PHS method used in public health. DST originated from participatory theater; the method was formalized by StoryCenter (www.storycenter.org) in 1994. Since that time, digital storytelling has been applied globally with communities as a tool to promote health and address social inequality (Dunford and Jenkins 2017; Gubrium et al. 2016a, d; Hardy and Sumner 2018; Lambert and Hessler 2018). Digital stories are 1–3 minute autobiographical videos that blend spoken word and imagery to describe personal experiences and understandings of health and wellbeing (Lambert 2013). As a form of public health storytelling, DST and digital stories can be used for data collection, health education, improved healthcare (Fiddian-Green et al. 2019; Hardy and Sumner 2018; Lohr et al. 2022), and to advocate for equity and social change (Fiddian-Green and Gubrium 2021; Gubrium et al. 2019; Krause and Gubrium 2019; Jernigan and Roach 2021; Nunez-Janes et al. 2017; Saffran 2021). DST is a group-based intervention that facilitates social connection and improved socioemotional well-being (DiFulvio et al. 2016; Fiddian-Green et al. 2017, 2019; Gubrium 2009; Gubrium et al. 2016a, b, c, d; Paterno et al. 2018). It is particularly relevant for social science inquiry that seeks to promote equity among historically disenfranchised and minoritized peoples and populations (Eglinton et al. 2017; Fiddian-Green et al. 2017; Krause and Gubrium 2019; Jernigan and Roach 2021; Lowe 2021; Paterno et al. 2018; Wexler et al. 2013). This chapter introduces the digital storytelling process and discusses how digital storytelling may serve as a tool for critical narrative research and intervention. First, the authors outline the theoretical foundations of DST and describe the method, including suggested adaptations for online and under-resourced settings. Next, the chapter outlines an ethical framework for DST, examining ethical implications of bringing personal stories into the public realm. The chapter concludes by presenting four key applications of DST for social science research and global public health.
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Digital Storytelling and Public Health
2.1
Critical Narrative Intervention
As a public health storytelling method, DST has five main purposes: critical narrative intervention at group and individual levels, social solidarity and movement building, research and evaluation, education and awareness, and policy and advocacy (see Fig. 1). The authors diverge here briefly to distinguish two equally important aspects of DST. The lion’s share of research on DST and health is
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Crical Narrave Intervenon: individual & group
Social Solidarity & Movement Building
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Educaon & Awareness
Fig. 1 Five purposes of digital storytelling
concerned with the application of storytelling products (i.e., completed digital and other stories) for education, behavior change, and humanizing personal experience for policy advocacy (Lohr et al. 2022; Tsui and Starecheski 2018). There is no doubt that this focus (on storytelling products) is imperative for redressing health inequities (Lohr et al. 2022). As a critical endeavor, the authors call on social science researchers to similarly prioritize and investigate health outcomes for individuals and groups that pertain to the process of DST, including social connection and solidarity, awareness, socioemotional well-being, and movement building (DeJager et al. 2017; DiFulvio et al. 2016; Fiddian-Green et al. 2019; Gubrium et al. 2016a, b, c, d; Tsui and Starecheski 2018). Critical narrative intervention (Fiddian-Green and Gubrium 2021; Gubrium et al. 2019) projects are distinguished by three core functions. First, critical narrative intervention (CNI) projects must center local knowledge and the voices of historically marginalized populations and peoples. Second, the CNI process should be one that bolsters social support and solidarity. Third, CNI projects should promote critical conversations to question stigma and advocate for social change and equitable policies. As a critical narrative intervention, DST engages participants in sensemaking, using the storytelling process as a tool for participants – as collaborators – to identify what stories are important for them and their communities to tell. Identifying and compiling one’s story is a pivotal opportunity for storytelling participants to consider and reframe experience, affording the space to consider future selves (Gubrium and Turner 2011). Further, sharing stories in a group setting can lead participants to feel a sense of control over experiences where they may have felt previously objectified (Gubrium 2009). Dialogue is central to the DST process (Lambert 2013). The story circle and story screening activities in particular (discussed in more detail in the Methods section
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below) are moments where each group member delves deeply into shared lived experiences, alternately listening/being listened to with the entire group (FiddianGreen et al. 2019). Especially for disenfranchised peoples and populations that have been historically silenced and erased from mainstream social discourse, this intentional listening and dialogue (Friere 1970) inevitably yields a sense of social connection and solidarity and can form the groundwork for movement building, social action, and social change.
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Theoretical Frameworks
Theoretical frameworks that guide DST include Freirean participatory action research, narrative theory, social cognitive theory, and multimodality (FiddianGreen et al. 2019). Freire’s critical pedagogy (Freire 1970) is central to DST. The process of sharing and viewing stories utilizes visual cues to prompt critical dialogue aimed at social change. In keeping with the tenets of participatory epistemology, a central goal of DST should be an inversion of the traditional research power dynamic that positions the research team as the experts. Instead, DST participants, facilitators, and research team members are collaborators in the co-construction of knowledge and determining a path to action (Gubrium et al. 2016a, b, c, d). This strengths-based approach is especially relevant when partnering with historically disenfranchised and minoritized peoples and populations (De Jager et al. 2017). Narrative theory centers storytelling methods as powerful tools for improved physical and emotional health by way of sense-making, coping, and facilitating a sense of control (Reissman 2008; Pennebaker and Seagal 1999). Creating and sharing stories as part of the group-based DST process can be emotional and cathartic, facilitating social connection and solidarity among participants with shared lived experiences (Fiddian-Green et al. 2019; Gubrium et al. 2016a, b, c, d). Social cognitive theory recognizes the influence of individual factors (e.g., self-efficacy, education), and social environmental factors (e.g., social support, structural racism), on health behavior (Bandura 2002). Social cognitive theory is relevant to DST in facilitating a social environment that prompts self-reflection, social rehearsal, and modeling, thereby building social solidarity and support (Fiddian-Green et al. 2019). Social cognitive theory is also an important framework for eliciting and naming structural factors that positively or negatively influence health. Lastly, multimodality (Kress 2009) provides the framework for considerations around how digital stories can be used to promote collective empathy and advocate for equitable policy. Digital stories are tangible and multisensory artifacts resulting from the research process. The multisensory elements (voice, imagery, sound, text) that comprise digital stories can generate emotional connection and empathy in response to the storyteller or story content (Fiddian-Green et al. 2019; Gubrium et al. 2016a, b, c, d). Empathy-building is a key element of mobilizing communities and policymakers to develop humanistic solutions to deep-seated drivers of health and social inequities (Fiddian-Green and Gubrium 2021; Ge et al. 2017).
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Digital Storytelling Method
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Components of the Digital Storytelling Process
Digital storytelling (DST) is an innovative methodology that simultaneously functions as a health intervention; data collection tool; and vehicle for health communication, education, and advocacy (Dunford and Jenkins 2017; Fiddian-Green et al. 2019; Gubrium 2009; Lambert and Hessler 2018). DST is a group-based, participatory process through which participants articulate cultural paradigms of health by creating a digital story (Dunford and Jenkins 2017; Fiddian-Green 2019; Gubrium 2009; Lambert and Hessler 2018). Central tenets of DST include the co-creation of knowledge, valuing the expertise of all contributors, and sharing translatable skills with participants (e.g., video editing and photography skills). It is effective for health promotion and advocacy because it draws from a community’s lived experience to improve provider–patient relationships; enhance culturally sensitive and structurally competent care; and promote positive attitudes, beliefs, and health behaviors in varying health contexts such as reproductive health and justice (Barcelos and Gubrium 2018; DiFulvio et al. 2016; Fiddian-Green et al. 2018; Gubrium et al. 2016a, b, c, d), chronic disease (Jernigan 2012; Kim et al. 2021; Valdez et al. 2021; Wieland et al. 2017), domestic and intimate partner violence (Anderson and Cook 2015; Anderson and Wallace 2015), mental health (DeVecchi et al. 2016; Lowe 2021), cognitive health and aging (Rincon et al. 2022), environmental health (Eglington et al. 2017; Liguori et al. 2021), substance use disorders (Fiddian-Green 2019; Paterno et al. 2018), and language and cultural heritage (Cunsolo et al. 2013; Iseke and Moore 2011). Furthermore, DST engages and equips marginalized communities with the resources to document often silenced experiences of health, and to identify solutions that integrate entire communities and inspire social change (Fiddian-Green 2019; Freeman et al. 2020; Gubrium et al. 2014). Digital stories put a human face on policy; they empower constituents to define relevant issues while creating a media product that grabs and influences policymakers and the public alike (Krause and Gubrium 2019). Repurposed into strategic communications materials, digital stories can sensitize and stimulate multilevel conversations on health, equity, and human rights (Gubrium and Krause 2018). DST is conducted in a group setting with individuals who often share lived experiences or identities. The optimal ratio for each workshop is ten participants supported by two trained facilitators. Over the course of three to four in-person sessions, trained facilitators guide participants through the process of writing and audio recording a 200–300-word story; gathering or producing images (photographs, original artwork, video clips, and so on); and learning basic video editing to finalize their digital story (Gubrium 2009; Fiddian-Green et al. 2019; Lambert 2013). DST is conducted in a workshop setting that consists of three main elements: (1) story development, (2) assembling the story, and (3) story screening. A recommended fourth component includes (4) community engagement and advocacy (Fig. 2).
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•Overview •Ethics •Guided wring acvites •Story Circle •Complete story script
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•Voiceover recording of story •Storyboarding •Selecng sound track/effects •Learning video eding soware •Finalizing 1-3 minute digital story
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•Sharing digital stories in group seng •Guided discussion around stories •Theme idenficaon
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•Community screenings •Policy advocacy •Educaonal curricula •*Recommended
Fig. 2 The components of digital storytelling
During story development participants view a selection of digital stories; discuss the elements of a compelling and engaging story (e.g., the structure of the narrative, tone, and pacing of voice, imagery, and sound); and consider the implications of sharing personal stories within and beyond the DST intervention setting. Next, participants are guided through a free writing exercise, using prompts specific to the research topic. The free writing exercise concludes with the story circle activity. In this activity, facilitators lead participants through a group process of sharing their stories out loud and receiving feedback from the group. After the story circle, participants work one-on-one with facilitators to complete their digital story script; the ideal length is 200–300 words. Assembling the story includes audio recording the story script, which constitutes the “soundtrack” for the digital story; gathering and creating still and moving images; and selecting sound effects. These components are entered into video editing software (the authors predominantly use WeVideo, which is cloud-based and user-friendly) to create the final digital story. In some projects, participants will learn rudimentary video editing skills under the guidance of facilitators. In other projects, facilitators will complete the video editing with input from participants. The level of storyteller autonomy and participation during the video editing process can be influenced by project budget, available internet connectivity, time, and participant interest. The concluding DST activity is the story screening. Much like the story circle, during this activity participants share and discuss their completed 1–3-min digital stories. The story circle and story screening activities are critical components of the DST research process. In keeping with action research principles (Freire 1970), both activities follow a focus group format and are guided by spoken and visual cues
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(i.e., the story drafts and completed digital stories). The story circle and story screening activities create space for participants to engage in a process of group sense-making, identifying shared ideas and lived experiences (Fiddian-Green et al. 2019; Gubrium 2009; Lambert 2013). The authors recommend that any adaptations of the DST process include these key components (i.e., story circle and story screening). Given the participatory roots and goals of DST, the authors also recommend planning for community engagement as a fourth step in the DST process. Community engagement strategies can include developing educational curricula and discussion guides based on a collection of stories, participant-led policy advocacy, and policy advocacy wherein public interest or other lobbyists utilize digital stories to advocate for specific policy changes (Barcelos and Gubrium 2018; CDC 2021; Gubrium et al. 2016a, b, c, d; Hill 2011; Lohr et al. 2022). One example of community engagement comes from Gubrium and colleagues’ project, Hear Our Stories, Diasporic Youth for Sexual Rights and Justice (https:// www.umass.edu/hearourstories/). Hear Our Stories focused on policy advocacy and anti-stigma efforts for young pregnant and parenting women of Puerto Rican descent. An intentional goal of the project was to develop participants’ capacity as sexual and reproductive rights activists. Of 31 women that participated in four DST workshops, a cohort of participants self-named Women Organizing Across Ages (WOAA) engaged in project sponsored training, workshops, meetings, and conferences. A subset of WOAA members participated in a body mapping project in addition to the DST workshops (Gubrium et al. 2016a, b, c, d). Completed body maps and digital stories were the focal point of a community forum where storytellers (and WOAA members) presented their productions. In keeping with participatory principles, active inclusion and participation of storytellers was crucial to the planning and execution of this event. Lastly, the authors recommend that community forums or screenings include intentionally planning for structured and productive conversations that support and honor storytellers and their stories.
3.2
Adaptations for Online and Under-Resourced Settings
3.2.1 In-Person and Online DST Curricula The COVID-19 pandemic hampered community-engaged and other person-centered research endeavors (Valdez and Gubrium 2020). Prior to COVID-19, DST was primarily conducted in-person. A typical in-person DST workshop curriculum is taught over 3–4 days, each ranging from 5 to 7 hours per day (StoryCenter 2021). Like many sectors, public health research using DST adapted to Zoom (https://zoom. us/) and other similar teleconferencing technologies to allow for remote attendance while protecting participant health. In the wake of a gradual easing of COVID-19 regulations, online and hybrid DST workshop models have persisted. Zoom and other similar platforms have increased accessibility by reducing structural barriers to inclusion, such as transportation and childcare (Valdez and Gubrium 2020). Yet, with the shift to Zoom and other teleconferencing technologies, equity concerns related to the “digital divide” remain, impacting low socioeconomic and BIPOC
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communities in the greatest proportion. Social connection and dialogue are central to DST. One tradeoff with online and hybrid workshop models is a potential reduction in the impact of social connection and solidarity experienced over the course of the workshop (Valdez and Gubrium 2020). Assessing the differential social and other impacts of online versus in-person DST interventions requires further investigation. The authors’ collective work has used DST in the context of reproductive and sexual health, rights, and justice. As program director at StoryCenter, AH has decades of experience applying and adapting the traditional in-person DST curriculum. AFG, AG, and AH have collaboratively written publications based on their research using this model (DiFulvio et al. 2016; Fiddian-Green et al. 2017, 2019; Gubrium et al. 2016a, b, c, d, 2019). Since the COVID-19 pandemic, all three authors have adapted the traditional in-person DST format to online models. This next section outlines and discusses the traditional in-person DST curriculum as developed by StoryCenter, and two modified online curricula (see Fig. 3). As one example of an online permutation, AFG and AG adapted a standard StoryCenter in-person, 3-day curriculum to six, 2-hour synchronous group Zoom sessions (Online Model 1, Fig. 3). This model included individual Zoom consultations for one-on-one script editing; storyboarding (i.e., selecting and identifying
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5-7 hours: °Finish & record story °Image gathering °Video eding 101 5-7 hours: °Finalize stories °Story screening °Discussion Potenal post-workshop
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Fig. 3 In-person and online DST models
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images, video clips, and sound); and video editing support. The story circle and story screening activities were conducted as a group over Zoom. This workshop was conducted as a methodology training for academic researchers with high computer literacy and consistent internet access. Most participants owned both a laptop and desktop computer in addition to either or both a smartphone or tablet. Zoom meetings could therefore be streamed on participants’ laptops or desktop computers, while voice recording and image gathering could simultaneously be done using a smartphone or tablet. Online Model 2 (see Fig. 3) outlines a collaboration between AFG and AH. In this hybrid workshop, participants were not taught video editing. This online workshop consisted of two, 2-hour synchronous Zoom sessions (project overview and story circle activity), 30–60-minute one-on-one Zoom consultations to complete and audio record their stories, followed by one-on-one in-person sessions with a professional photographer/videographer. AH then compiled and edited draft digital stories that she sent to participants for final approval. After the stories were completed and approved, interested participants, facilitators, and organization staff gathered for a story screening over Zoom. This workshop was conducted with a population with lower digital literacy, many of whom relied on smartphones to stream the synchronous Zoom sessions. Participants with additional laptops or tablets often shared them with family members, some of whom were children who used said technology for remote schooling. A challenge with this population was trouble-shooting how to remotely conduct voice recording tutorials using smartphones that were simultaneously being used to live stream the one-on-one Zoom consultations. AFG addressed this challenge in the moment by having participants log out of Zoom, record their story independently, then log back into Zoom to continue the one-on-one consultation. Once back in the one-on-one Zoom meeting, AFG then instructed participants on how to electronically share the recorded story, after which she reviewed the recording together with the storyteller. Online workshops tend to be shorter in duration than in-person workshops to proactively assuage potential “Zoom fatigue” (Nesher Shoshan and Wehrt 2021). To compensate for reduced workshop length, online models typically require participants to complete some preparatory work, such as reviewing exemplar digital stories, reading course materials, and writing the initial and iterative story drafts outside of the confines of group meetings online. Additionally, online DST models typically ask participants to complete “homework” during the course of the workshop. Homework is completed individually and in consultation with facilitators, and can include: completing the written story draft, recording the final story, gathering images, and finalizing video editing.
3.2.2 DST in Under-Resourced Settings AH has extensive experience working with under-resourced communities with limited internet and technological access through the Silence Speaks Initiative (silencespeaks.org), a program of StoryCenter that has conducted projects in nearly 20 countries around the world.
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Silence Speaks workshops adapt the traditional DST methodology into a blend of oral history, popular education exercises, and varied participatory production methods, engaging people in the creation of short, first-person videos about their own lives. With the permission of workshop participants, Silence Speaks stories are shared locally and globally as tools for training, community mobilization, and policy advocacy to promote health, gender equality, and human rights. This chapter draws from Silence Speaks projects conducted in Nepal (Voices for Justice, which focused on stories of gender-based violence) and Ghana (Youth Like Me: Young People in Ghana Talk about Sexuality, Relationships, and Parenthood). Two main considerations for low-resource settings include (1) access to digital equipment and (2) reliability and quality of internet connection. In these settings, an in-person workshop model can be most successful (see Fig. 3, In-person model). If participants lack digital equipment and the research team does not have the resources to supply a traveling laptop lab, the authors suggest partnering with local schools, universities, or community-based organizations/NGOs that may offer the use of computer labs with adequate connectivity. Additionally, various DST components can be kept low cost with little need for technology. Story development can be completed using paper and pen, or by using a note-taking smartphone app (typically included as a standard smartphone featured utility). Gathering and producing images for the story can be done by providing a cellphone or other digital camera for participants to share, or asking them to draw images and other illustrations for the story. If participants have access to smartphones, tablets, or laptops, but the internet is unavailable or unreliable, researchers/facilitators can arrange to bring in hotspots or opt to use video editing apps or software that can be completed offline. iMovie, Shotcut, and OpenShot are some options, but this technology is continually evolving and expanding, The authors recommend researching current options during the project planning phase. Alternatively, facilitators can consider removing video editing from the DST process. Similar to Online Model 2 (see Fig. 3), facilitators can complete video editing with input and final approval from participants, either during the workshop process or by meeting one-on-one online after the in-person sessions. The story screening can be done without internet access if facilitators download the completed digital story to a hard drive that can be used to project the stories. Again, the authors encourage all adaptations to retain the story circle and story screening components as group activities.
3.3
Data Collection and Analysis
A comprehensive review of data collection and analysis using DST is beyond the scope and allotted space of this chapter. As a research method, DST comprises varying and multimodal data collection and analytic approaches that draw largely from ethnographic (Emerson et al. 2011) and visual methodologies (Rose 2016; Pink 2015). Examples of data collection during and after the DST process include: ethnographic field notes and visual data (e.g., participant drawings, photographs,
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and video clips) collected around the DST process; transcribed recordings of the story circle and story screening activities; pre and post surveys (both workshop evaluations and health outcome assessments); follow-up interviews; and storytelling and/or group analysis of completed digital stories. Additionally, digital stories can be used as visual elicitation devices during interviews, focus groups, and community forums. Analytic procedures can be guided by narrative analysis (Reissman 2008), case study or case series approaches (Creswell and Poth 2016), and visual analysis (Rose 2016; Mitchell 2011), and supported by the use of intertextual transcripts (Gubrium and Turner 2011). Various authors have outlined case study examples that detail data collection and analytic procedures (DiFulvio et al. 2016; Fiddian-Green et al. 2017, 2019; Gubrium et al. 2016a, b, c, d; Gubrium and Turner 2011). The authors suggest reviewing these contributions for more detailed guidance and discussion on data collection and analytical procedures.
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Ethical Framework and Considerations
4.1
Ethical Guidelines for the Research Team
The authors encourage researchers to frame ethical procedures for DST as a “situated practice” (Gubrium et al. 2014). Ethics are a dynamic and context-specific process that should be iteratively evaluated throughout the entire DST process. Protection of storyteller autonomy and well-being should be the guiding principle, informed by three recommended practices. First, all research team members (facilitators, researchers, and students) should have training in DST and expertise in group work. The authors encourage all research team members to first participate as a storyteller in a DST workshop. This experience familiarizes researchers with methodological procedures; additionally, creating and sharing a personal narrative is a reflexive practice strongly aligned with CBPR principles. Ideally, research team members will complete an advanced DST training and partner with a facilitator or research collaborator with extensive experience using this method. Second, DST should be guided by trauma-informed principles (Becker-Blease 2017; Tebes et al. 2019). This second recommendation is critically important when working with historically disenfranchised populations and people with stigmatized health identities (e.g., people who inject drugs, adolescent parents, survivors of violence or conflict, unhoused people, and so on). Regardless of health status, the research team should proactively anticipate storyteller emotionality as one outcome of the storytelling process, and be prepared to provide appropriate support. Related ethical considerations include: ensuring the availability of outside resources and follow-up support for storyteller participants, including mental health practitioners or social workers, and partnering with community-based organizations to ensure continuity of support (Fiddian-Green et al. 2019; Gubrium et al. 2019). The third recommendation is for the research team to adopt a stance of cultural humility (Tervalon and Murray-Garcia 1998). Researchers should take care to avoid
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reinscribing racism and other problematic power dynamics, which can and does occur in the best-intentioned CBPR projects (Muhammad et al. 2015; Wallerstein et al. 2019). Project planning should allow ample time for research team members to internally discuss self and team reflexivity. Additional discussions related to equitable power-sharing and partnership development should include community-partners and ideally storyteller participant groups. A community-advisory board (CAB) can be particularly valuable for ensuring accountability and visibility of cultural humility and antiracism principles during all phases of project planning, implementation, and evaluation.
4.2
Ethical Framework
The framework for ethical practice and DST is guided by tenets outlined by Gubrium et al. (2014). This section outlines seven ethical considerations in DST, posing suggested discussion questions for project planning and implementation. The first consideration is fuzzy boundaries, which refer to the inevitable challenges that arise from conflicting priorities between research and practice. This should be a familiar tension to those with experience in community-engaged, CBPR, and other actionbased research approaches (Muhammed et al. 2015; Wallerstein et al. 2019). Questions to consider when examining fuzzy boundaries include: How can researchers stay true to participatory principles (Israel et al. 2017) when balancing the interests and priorities of funders and academic institutions? Additionally, how do discrete funding cycles influence the expectations around was, can sustainability be built over the course of the project and dissolution of research-community partnerships? Gubrium and colleagues (2016a, b, c, d) explore this tension, drawing from their experiences addressing sexual trauma among participants in a DST workshop with young women, some of whom were pregnant and parenting. A second consideration is recruitment and consent to participate in a DST workshop. The authors’ collective work focuses on historically disenfranchised and minoritized populations that have faced systematic erasure and exclusion from public health discourse. It is imperative to recruit a diverse group of participants to redress this practice. Yet, attempts for diversity, equity, and inclusion must be critically attuned to avoid reinscribing problematic research dynamics (Muhammed et al. 2015; Wallerstein et al. 2019). All three authors have familiarity working in research contexts with women who have experienced trauma. Participant protection is crucial. Considerations for recruitment and consent to participate include: Is it harmful for participants with a history of trauma to share their stories? Or is it paternalistic and perpetuating further harm to excluding them from the potential for catharsis in a DST workshop? What mechanisms can be put into place to ensure participants’ privacy and confidentiality, e.g., through blurring images, having a third-party audio record voiceover narration, and so on. A third ethical consideration is the power of shaping. In seeking to create a story that is resonant with audiences (e.g., community members, funders, policymakers), facilitators and other research team members may “shape” digital stories,
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inadvertently imposing their own personal aesthetic and/or research agenda on the stories. DiFulvio et al. (2016), Fiddian-Green et al. (2019), and Gubrium and colleagues (2016a, b, c, d) all highlight skill building (i.e., learning photography and videography skills) as one socioemotional impact of engaging in the DST process. Yet, funder expectations of a polished final product can influence facilitator input on story development and assembly. This tenet is associated with conflicting priorities (i.e., fuzzy boundaries) – pressure to meet the funder’s demands may be significant. As one example, Lowe (2021) describes a project that used DST to understand the mental health impact on immigrant rights advocates who share their personal stories for advocacy around immigration and (un)documentation status. This example highlights tensions faced when receiving funding from a nationally recognized organization, pointedly examining the mental health impacts of publicly sharing stories for a distinct political agenda. In her article, Lowe provides guidance on how to proceed with democratic decision making when working within a funder’s constraints. An additional concern related to the power of shaping includes how personal artistic aesthetics and conceptions of what makes a “good story” among facilitators and/or the research team can conflict with those of storyteller participants. Although well-intended (i.e., wanting to support participants in creating final digital stories that are resonant and evocative), facilitator/research team guidance is always influenced by power dynamics that can impede participant autonomy. This dynamic is influenced by the facilitator/research team familiarity and expertise in what story content and elements of DST may be more likely to influence policy and social change. Questions to consider with the power of shaping include: what story does the participant want to tell and with what visual and sensory elements? How does my role as facilitator/researcher influence the participant’s likelihood to accept my feedback? As a facilitator/researcher am I advocating to funders for participant autonomy? How does my own social location influence the feedback I/we provide to participants, who may be historically marginalized? The fourth consideration is representation and minimizing harm. A central tenet of the DST process is for participants to own their completed stories. It is, therefore, important to promote participant autonomy to determine what is included in their story. However, depending on story content and messaging, digital stories have the potential to misrepresent communities and/or reify existing stereotypes. Depending on the topic, storytellers may choose to represent illegal activity, potentially endangering storytellers or subjects. Alternatively, they may describe experiences in ways that are in conflict with accepted research on health issues. In working to balance this potential tension between storyteller autonomy and recognized scientific knowledge, it may be useful to include a subject-matter “expert” in the workshop to discuss questionable content with participants and guide them in creating stories that can be used reliably for health education and advocacy. An additional recommendation would be to have project partners “sign off” on final stories to avoid inaccuracies. While narratives and storytelling have a therapeutic aspect (i.e., catharsis), researchers working with historically marginalized and stigmatized groups should
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be attentive to participants experiencing active or historical trauma. Facilitators and researchers should take a trauma-informed approach (Becker-Blease 2017; Tebes et al. 2019) with participants who may lack adequate mental health and emotional support (e.g., social networks, resources, and professional support) while participating in the DST workshop. Depending on the topic and prioritized community, the research team should anticipate potential risks and harms, and devise a proactive support plan. One consideration would be to include a trained support person, such as a social worker with cultural humility training, to assist during the DST workshop. Partnership with a community-based organization that has ongoing relationships with participants is also an asset when working with marginalized and stigmatized groups to ensure continuity of support. Gubrium et al. (2016a, b, c, d) describe a situation wherein two participants in a project focused on reproductive justice with pregnant and parenting young women drafted story scripts that described violence. One participant, Amara (As part of an ethical practice, pseudonyms used for all participants) crafted a story about her childhood experience of sexual assault at the hands of a family friend. The research team was able to assess that this participant had immediate and ongoing support from a social worker and therapist. Amara was visibly empowered by the process of constructing and sharing her story. Given her age (16), the research team gently encouraged Amara to remove recognizable images of herself from her digital story to allow the space to later change her mind about publicly sharing her story and to prevent any familial tension around sharing the story. The team was able to ensure Amara’s well-being through indirect contact with a partner community-based organization. The situation was more tender with Jenna, a second participant. Jenna had a history of childhood sexual abuse and was actively leaving a violent intimate relationship at the time of the workshop. Jenna was 18 and living with her child in shelter housing at the time of the workshop and had limited systems of support. During the workshop, the team was able to help Jenna fill out a restraining order against her ex-boyfriend. Given the active nature of her trauma, the team discouraged Jenna from making her digital story about their relationship, for fear of perpetuating further trauma. Instead, they supported her to create a story that was a broad plea for others not to stay in abusive relationships. One research team member (AFG) conducted a follow-up interview with Jenna a few weeks after the workshop, and was able to assess that she and her child were safe and the restraining order was in effect. However, soon after Jenna changed her phone number and the team lost contact with her. They did reach out to our partner organization to discreetly conduct a wellness check. Because she was over 18 years old, the team had limited ability to inquire or intervene beyond that. In her work with Silence Speaks and Youth Like Me: Young People in Ghana Talk about Sexuality, Relationships, and Parenthood, AH and partners created educational curricula and discussion guides that drew from completed stories. Discussion guidelines included recommended audiences and facilitators for each of the stories. Given the project focus on gender-based violence, recommendations included: requiring facilitators to have advanced training in trauma and women’s health issues, identifying regions of Ghana where digital stories should not be screened due to the
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threat of violence toward storytellers from those regions, and identifying appropriate audiences for screenings (e.g., youth-peer educator and secondary school settings were considered to be inappropriate). Questions to discuss around representation and minimizing harm include: what potential trauma may surface in this workshop? What plans or partnerships are in place to support storytellers during or after the workshop? How would excluding a participant because of their active trauma impact their well-being (particularly for under-resourced participants who may have limited or no support)? Do we (as facilitators and research team members) have adequate skills and training to respond adequately to participant trauma? How can we attend to our own mental health and well-being while simultaneously supporting participants who are experiencing active or historical trauma? The fifth ethical consideration is confidentiality. DST is conducted in a group setting, which means that confidentiality cannot be definitively guaranteed. Furthermore, participants may opt to include identifying details in their stories that may hinder anonymity. Many participants identify a sense of pride (Gubrium et al. 2016a, b, c, d) from creating a digital story, and may wish to be credited by name. Participants are given a digital link to their story via a private YouTube channel or other similar social media platform. As “owners” of their completed story, participants may choose to share with a few friends and family, or with broader social media networks. However, participants may change how they feel over time about the content and context of their digital story. Therefore, it is important to consider the implications of sharing digital stories on social media or the internet. Questions to consider with regard to confidentiality include: are there potential harms if participants can be identified and associated with their digital story? How can we encourage and support participant confidentiality? Have we included a plan to discuss with participants the implications of sharing their digital stories on social media or other public sites? The sixth ethical consideration is release of materials. Consenting to DST workshop procedures should not be conflated with consenting to a release of materials (i.e., produced digital stories). The authors recommend introducing release of materials at the beginning of a workshop, but waiting to ask participants to complete them until after the story screening activity. Only then do participants have a sense of what it feels like to share their stories in an intimate semi-public setting, where they can be encouraged to consider the implications of later sharing stories with broader audiences. Release of materials must be negotiated as an ongoing process. Release of materials documents should present a range of settings where stories may be shared, including the workshop (i.e., the story screening), community and other public forums, educational websites and forums/classrooms, policy advocacy, and academic or other relevant professional conferences. Storyteller well-being should be prioritized above all else and storytellers should retain the right to revisit and change sharing permissions over time. All participants should be given the option not to share their digital stories. Questions for discussion specific to release of materials include: did we wait until the end of the workshop for participants to make decisions about how and where they want stories to be shared? Do our participant forms allow participants to change their
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minds about sharing permissions? Does the research team have the capacity to follow up regularly and ensure that we and any other project partners and funders thoroughly respect the wishes of storytellers, when it comes to sharing their stories? A seventh and additional consideration presented by Gubrium et al. (2014) relates to ethical story distribution. This ethical challenge can arise when storytellers want to publicly share their stories. This consideration is increasingly important with the ever-evolving landscape of social media and other social sharing websites and applications. The research team must prioritize participant autonomy and ownership of the final digital story when discussing implications of putting stories into the public, digital realm. Participants should always be given the option to withdraw their stories at any time from project-associated websites, blogs, or social media sites. Questions for the research team to consider regarding ethical story distribution include: have we adequately discussed the implications of sharing stories on social media and other digital platforms? Have we included storytellers in discussions regarding their digital footprint? If others are referenced in a digital story, have storytellers considered the potential impact on current or future relationships from putting digital stories on digital platform(s)?
5
Four Applications of DST for Global Public Health
DST is an important form of public health storytelling. Drawing from the authors’ collective work focused on reproductive justice, gender-based violence, and human rights we highlight four elements of DST that make it a particularly valuable tool for global public health practice. First, DST can help to elicit and name communitydriven solutions to health and social inequality. The process positions participants as experts of their experience and reality. In global settings, often with entrenched histories of colonization, methods that prioritize the voices of individuals and groups that have been historically silenced or voiced by others are essential. Indigenous and colonized communities have long relied on storytelling as a method for communication, knowledge transfer, and sense making (Smith 2019). DST prioritizes varying forms of communication and expression – not simply text. For historically marginalized and stigmatized populations, the use of stories and storytelling can shift the focal point from the (possibly previously objectified) storyteller to the final story in ways that can support productive problem solving. Second, stories stemming from DST projects commonly highlight varying forms of structural and institutional violence that perpetuate and reinforce health inequities. Examples from the authors’ collective projects identify housing insecurity, state surveillance, lack of access to transportation, and provider discrimination as central structural and institutional influences on health and well-being (FiddianGreen 2019; Gubrium et al. 2018). Public health solutions can often be shortsighted by focusing on individual level, behavioral-based solutions to health that sideline structural root causes of health inequities. In identifying structural influences on health, DST and digital stories can help communities, practitioners, and
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policymakers develop more sustainable upstream solutions to health issues (FiddianGreen and Gubrium 2021). Third, the process of DST facilitates social connection and solidarity among participants (DiFulvio et al. 2016; Fiddian-Green et al. 2019; Gubrium et al. 2016a, b, c, d). In an increasingly polarized world where loneliness is considered a public health epidemic (Holt-Lundstad 2017; Ge et al. 2017; King 2018), social connection holds crucial implications for health and well-being. In the authors’ work using DST, we have observed countless examples of social connection by way of active listening and shared lived experience (Fiddian-Green et al. 2019). Social connection via public health storytelling is one potential antidote to loneliness and collective trauma and a vehicle for improved well-being. Fourth, DST is an important tool for challenging stigma. DST can humanize experience, and final stories can create a “narrative shock” that challenges dominant narratives that perpetuate stereotypes about historically marginalized people, populations, and lived experiences (Krause and Gubrium 2019). This aspect of DST is important in global public health settings where “pain narratives” – often graphic visual depictions of suffering children – are familiar sights, wherein “social science researchers set out to document the problems faced by communities, and often in doing so, recirculate common tropes of dysfunction, abuse, and neglect” (Tuck and Yang 2014, p. 229). Instead, digital stories can offer accessible, inspiring, and deeply honest portrayals of real peoples’ challenges and strengths.
6
Conclusion and Future Directions
Global public health is marked by increasing complexity. Developing solutions to persistent health inequalities under the looming threat of environmental instability, future pandemics, and an increasing anti-science sentiment presents significant challenges for social science research(ers). Yet it is these challenges that call for innovation and change. Public health storytelling methods provide that opportunity for change. By critically contending with historical and structural drivers of health, public health storytelling can be an important vehicle to engage all voices to devise solutions that advance health equity. This chapter describes DST as one critical public health storytelling method with important applications for global public health and health activism. It has provided an overview of the method, including key theoretical frameworks and ethical considerations. Using examples from the authors’ collective work advocating for sexual and reproductive justice, the chapter closes with four applications of DST that are particularly resonant for global public health research and advocacy. With hopes for increased empathy and global equity, the authors call on researchers interested in a public scholarship to further explore DST and other public health storytelling methods as innovative tools to develop meaningful community-based partnerships to collectively promote social change.
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Cross-References
▶ Consensus Methods for Health Research in a Global Setting ▶ Mixed Methods Research in Global Public Health ▶ The Essence of Social Sciences in Global Public Health: An Introduction ▶ Upending Quantitative Methodology for Use in Global Public Health
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Concept Mapping Method Sharanya Napier-Raman, Scott Rosas, Syeda Zakia Hossain, Elias Mpofu, Mi-Joung Lee, Pranee Liamputtong, Tinashe Dune, and Virginia Mapedzahama
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Group Concept Mapping . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Key Characteristics of GCM . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Mixed-Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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S. Napier-Raman (*) · S. Z. Hossain · M.-J. Lee Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia e-mail: [email protected]; [email protected]; [email protected] S. Rosas Concept Systems, Inc., Ithaca, NY, USA e-mail: [email protected] E. Mpofu College of Health and Public Service (Rehabilitation and Health Services), University of North Texas, Denton, TX, USA Faculty of Medicine and Health (School of Health Sciences), University of Sydney, Sydney, Australia Faculty of Education (Educational Psychology), University of Johannesburg, Johannesburg, South Africa e-mail: [email protected] P. Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] T. Dune Translational Health Research Institute, Western Sydney University, Campbelltown, NSW, Australia e-mail: [email protected] V. Mapedzahama Transnational Health Research Institute, Western Sydney University, Penrith, NSW, Australia © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_63
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3.2 Participatory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Using GCM for Public Health Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Strengths of GCM . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Limitations of GCM . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Process: Stages of GCM Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Stage 1: Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Stage 2: Generation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Stage 3: Structuring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Stage 4: Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5 Stage 5: Interpretation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6 Stage 6: Utilization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Case Study: Migrant and Refugee Youth Sexual and Reproductive Health and Rights Decision-Making . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 Generation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.3 Structuring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.4 Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.5 Interpretation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.6 Utilization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
This chapter introduces group concept mapping and illustrates the merit of this methodology for global public health research. Group concept mapping is a mixed-methods participatory research approach that integrates qualitative conceptual data and rigorous multivariate statistical analysis, transforming abstract conceptual data into visual representations or “maps.” The participatory nature of group concept mapping as well as its fully integrated mixedmethodology makes it a particularly useful methodology for public health research. Group concept mapping is a collaborative group process that seeks to build consensus between disparate perspectives within a group. It provides researchers with actionable, participant-determined research outcomes. Group concept mapping has been applied in social research across a range of disciplines, including public health, yet remains underutilized by health researchers. This chapter offers a guide for conducting the methodology, detailing the six key steps in group concept mapping: planning, generation, structuring, analysis, interpretation, and utilization. To illustrate group concept mapping in action, the chapter presents a case study using this methodology to examine the sexual and reproductive health decision-making of migrant and refugee youth in Australia. This case study provides evidence of the utility of group concept mapping for examining the complex social issues of public health research. Keywords
Group concept mapping · Mixed methods · Participatory research · Global public health · Group conceptualization
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Introduction
Conceptualization is a means of explicating complex social phenomena, achieved through reifying and making apparent the abstract imagery of a concept (Rosas 2016). Concepts are developed by individuals through a “contextual meaningmaking” process by which links and connections are formed between ideas (Rosas 2016, p. 1405). Concepts acquire meaning through context: that is, their relationship to other concepts (Cossette 2002; Rosas 2016). Concept maps provide visual representations of cognitive models: how people understand phenomena in their lives. Concept mapping approaches seek to represent complex information (Davies 2011), and to map or pictorially represent a group or individual’s understandings, or conceptualizations (Trochim and Kane 2005). As such, concept mapping is a method for explicating and making tangible abstract conceptual data (Rosas 2016). Group concept mapping (GCM), the focus of this chapter, is a mixed-methods participatory approach to research that integrates qualitative conceptual data and quantitative analysis. Broadly speaking, concept mapping simply refers to the visual representation of ideas through maps. Several mapping approaches have been used in social science research (Davies 2011), of which group concept mapping (GCM) as described in this chapter is simply one. The specific methodology discussed here is the “structured conceptualization” process in which group procedures are combined with multidimensional statistical analyses (Trochim 1989; Trochim and Kane 2005; Trochim and Linton 1986). A collaborative group method which allows participants to be involved across the research process, GCM integrates diverse perspectives to develop a collective conceptual framework for understanding a particular topic (Kane and Rosas 2018). As evidence of its broad appeal and utility, GCM has been used for research spanning myriad social science disciplines, with over 450 publications using the methodology (Trochim 2017). GCM has wide applicability and disciplinary scope, including psychology and mental healthcare (Corcoran 2005); program planning and evaluation (Barth 2004); education (Haymovitz et al. 2018); youth health (Hydeman et al. 2019; Minh et al. 2015), immigrant health (Ahmad et al. 2011), nutrition and wellness (Halberg et al. 2021; Keita et al. 2016; Macdiarmid et al. 2010); and bioeconomics (Berg et al. 2018). This form of applied social research continues to be adopted by social science researchers seeking community or stakeholder understandings. Many facets of GCM, particularly the participant-oriented nature of the approach, make it a viable method for public health research (Burke et al. 2005). GCM allows for rigor and objectivity without compromising on the depth and complexity of conceptual data. Rigorous statistical approaches – multidimensional scaling and hierarchical cluster analysis – are used to develop abstract conceptual data into visual representations. This chapter introduces GCM as a method for conducting social sciences research in global public health. It argues that the key aspects of this particular methodology – being an integrated mixed-methods, non-hierarchical,
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participatory approach – make it particularly useful for conducting public health research and providing actionable outcomes.
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Group Concept Mapping
Mapping tools allow complex data to be represented in a manageable, comprehensible way (Davies 2011). The term “concept mapping” has been applied to several different mapping techniques that constitute unique approaches to research and knowledge production. Mapping techniques such as mind-mapping (which involves free-form, visual representation of ideas) are often conflated under the banner of concept mapping, despite being distinct methods (Davies 2011). Consistent across such methods, however, is the aim of organizing and/or structuring knowledge, resulting in the visual representation of relationships between ideas. While concept mapping is often a broad descriptor, there are specifically defined methods which the name denotes: firstly, Novakian concept mapping and, secondly, the focus of this chapter, group concept mapping. The form of concept mapping described in this chapter has many characteristics that make it distinct from Novakian mapping. Novakian mapping was originally developed in the late 1980s by Joseph D. Novak as a method for supporting meaningful learning (Novak and Cañas 2011). Novakian maps represent how an individual understands a given topic. They use a hierarchical structure, with broader, more overarching concepts at the top and successively more specific concepts placed below (Novak et al. 1983). Labelled linking lines are drawn between concepts to indicate relationships of concepts to one another (Novak et al. 1983). The authors use the name “group concept mapping” (GCM) to distinguish the methodology described here from Novakian and other concept mapping, as the GCM method is, fundamentally, a group process that represents the thinking of a collection of individuals (Kane and Rosas 2018). Contemporaneous to the emergence of Novakian concept mapping, William Trochim developed the GCM method (Trochim 1989; Trochim and Kane 2005; Trochim and Linton 1986). Like Novakian concept mapping, GCM involves the production of maps that visually represent the relationship between concepts. GCM, however, is a method that represents the conceptual understandings of a group rather than that of an individual. While Novakian mapping can be used to capture how an individual understands and structures knowledge of a certain concept, GCM integrates individuals’ knowledge to create a shared mental model (Rosas 2016), or, in other words, “group wisdom” (Kane and Rosas 2018). GCM attempts to make tangible and representable the intangible and multifarious conceptualization of a group. A group, as Rosas argues, can be considered a “socially-shared, distributive cognitive system” (2016, p. 1405). Group knowledge, shared and held by a collective, is not distributed evenly across individuals: group members do not necessarily hold the same knowledge, or the same amount of knowledge on a given topic (Kane and Rosas 2018; Rosas 2016). Effectively accessing and activating group knowledge requires a diversity of points of view,
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independence from each other’s opinions, and a mechanism for aggregating private judgments into a collective decision (Surowiecki 2005). GCM offers a means for extracting and elucidating the complex, sometimes contradicting knowledge of many individuals. As such, GCM is highly useful in explicating complex social phenomena (Rosas 2016). Moreover, GCM does not require a homogenous participant group. Therefore, the final maps do not present a homogenous group perspective. Instead, resulting maps demonstrate the understandings of a group of individuals, seeking consensus between dissimilar perspectives, while allowing for differences and conflicting views. This pluralism and heterogeneity are important for research that addresses complex and multifaceted issues (Albert and Burke 2014; Burke et al. 2005). GCM is a multi-stage process in which participants firstly brainstorm items relevant to the area of interest (Kane and Rosas 2018; Kane and Trochim 2007, 2009; Rosas and Kane 2012; Trochim and Kane 2005). Participants then individually sort brainstormed items into groups based on similarity and rate each item on a scale determined by the project planners. Multivariate statistical analysis is used to transform data from the participant sorting and rating activities into concept maps. Unlike many other forms of concept mapping, GCM uses specific statistical processes which require software to run (Davies 2011; Kane and Trochim 2007). Finally, unlike Novakian maps, the maps produced in GCM are not hierarchical. Rather than a structured representation of superordinate and subordinate concepts, GCM is a representation of a set of networked ideas.
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Key Characteristics of GCM
GCM has its origins in the 1980s, with Trochim’s development of a method for program planning and evaluation (Trochim and Linton 1986). The following section addresses key characteristics of GCM concerning public health research. Two key characteristics make GCM particularly suited to public health research – being a mixed-methods approach and being participatory.
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Mixed-Methods
Concept mapping is an inherently mixed methodology, integrating qualitative and quantitative methods across the entire research process. Mixed-methods research offers a means of straddling disciplinary boundaries, opening research to multiple forms of knowledge and ways of seeing (Creswell and Plano Clark 2018; HesseBiber 2015; Liamputtong and Rice 2022). A core tenet of mixed-methods research is that, in engaging both qualitative and quantitative approaches, researchers can achieve a greater understanding of issues than solely quantitative or qualitative methods would allow (Creswell and Plano Clark 2018; Liamputtong and Rice 2022). Ideally, such research combines the strengths of both approaches – the breadth of quantitative data and the depth of qualitative data. Conclusions and
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inferences made in mixed-methods research emerge from these combined strengths and may offset limitations of the respective approaches. Further, in encouraging the “de-disciplining” of research (Hesse-Biber 2015), mixed-methods approaches invite pluralism, creativity, and diversity into the research process. Such a methodology is particularly useful when examining complex, multifaceted issues, particularly those in public health. Health research often requires generalizable, replicable, objective data, while also requiring explanations and reasoning for these results. Proponents of mixed-methods approaches assert that such research is key to addressing health disparity and inequality, social and behavioral health determinants, and issues such as the rise of chronic health problems (Creswell and Plano Clark 2018; McBride et al. 2019). While a mixed-methods study must merge qualitative and quantitative approaches, there are myriad design typologies and manners in which integration occurs (Teddlie and Tashakkori 2010). GCM can be considered a “fully mixed” method research design (Leech and Onwuegbuzie 2007, p. 267), with qualitative and quantitative data collection and analysis taking place throughout the research process. Others have argued GCM can be described as a sequential exploratory design with prioritization of quantitative data analysis (Hanson et al. 2005). Regardless of how GCM is typified, an argument can be made that the integration of qualitative and quantitative techniques and data are highly dependent, such that the absence of one would fundamentally change the end result.
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Participatory
GCM is, fundamentally, a participatory method. GCM involves participants at each stage of the research process, ensuring a truly collaborative outcome. Participants determine the content of the resulting map(s). Kane and Rosas (2018, p. 7) note that a key tenet of GCM is the “participant as knowledge holder” – privileging the viewpoints of those who are most impacted by an issue. Research with a participatory lens seeks to value, engage, include, and inform those whose lives and worlds are affected by the phenomena being studied. Participatory approaches ensure that research is relevant, useful, and comprehensible to those who are impacted by it (Olson and Jason 2015). Participants are drivers and owners of research processes and outputs, rather than passive research subjects (Minkler and Wallerstein 2008; Wallerstein and Duran 2010). Increasingly, public health research has incorporated participatory methods (Davis et al. 2012; Israel et al. 2012; Liamputtong 2020). Such research seeks to educate and effect change. Importantly, participatory research is a means of empowering communities and individuals, subverting traditional power-dynamics that place researchers in control of knowledge. Rather, participatory research is reciprocal, operating on mutual sharing of knowledge (Liamputtong 2020; Minkler and Wallerstein 2008; Wallerstein and Duran 2010). As such, participatory research opens space for dialogue between those with different forms of expertise. Participants are considered
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experts in their own lived experiences (Olson and Jason 2015). Being able to participate in one’s health is a right – one which can, and should, extend into health research (Villa-Torres and Svanemyr 2015). As noted, GCM is a method that explicates the shared conceptualization of a group and thus can be particularly useful for investigating health issues at a societal level. Concordant with Participatory Action Research (PAR) principles, Rosas (2012) argues that GCM is an ecologically and experientially sensitive method that can be used to elicit and describe a relational worldview. It allows for theorizing anchored in people’s experiences. Practically speaking, GCM provides for utility and validity of the collaborative research, by maximizing and varying participation. Not only is GCM a truly participatory method, it is also action-oriented, providing actionable outcomes (Albert and Burke 2014; Burke et al. 2005; Kane and Rosas 2018; Kane and Trochim 2009). Vaughn et al.’s (2017) review highlighted the use of GCM as a community-engaged methodology that supported building community cohesion and contributed to more relevant and targeted interventions and outcomes. Across more than 100 studies, they identified how GCM allows communities to be an active part of the entire research process, develop working relationships with researchers, and be directly involved in a process that can bring positive community change. GCM provides clear guidelines, based on participant perspectives, of ways to bring about necessary change. As Walker et al. (2014) note, where communities have ownership and control over research outcomes, this positively impacts uptake – and therefore success – of effective interventions. Finally, the participatory nature of GCM accepts differences between individuals, while aiming to build consensus. GCM does not seek to impose homogeneity upon diverse and disparate stakeholder groups. Rather, GCM allows for and embraces points of difference (Minh et al. 2015). All participant voices are given credence.
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Using GCM for Public Health Research
As a method, GCM is particularly suited to public health research, in particular where PAR is employed. The hallmarks of participatory approaches within public health research involve reflection, data collection, and action to improve health and reduce inequities by involving people who, in turn, take actions to improve their health. Adherence to PAR shows a commitment to democratic principles and strives to put the rhetoric of participation into action (Baum et al. 2006). GCM has, since its development, been used in health-adjacent research – initially with health program planning and evaluation (Walker et al. 2014). While there have been several GCM studies that have explored public health issues, the methodology remains largely under-utilized in this sphere (Walker et al. 2014). Public health issues span social, political, economic, and biomedical arenas and require research methods that can integrate and examine perspectives and factors from these often disparate areas (Israel et al. 2012; Walker et al. 2014). GCM is one such method.
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The utility of GCM as a method for examining complex public health issues is demonstrated in Hydeman et al.’s study examining the needs of adolescent and young adult cancer survivors (2019). Participants consisted of young people diagnosed with cancer between the ages of 18 to 39 who were 2 years or more posttreatment. The study results revealed that survivors contend with ongoing physical and psychosocial concerns post-treatment – including navigating follow-up care, adjusting to life post-treatment, and continued physical, emotional, and cognitive effects of treatment – that are largely unaddressed by care providers (Hydeman et al. 2019). Findings provided suggestions for how future care can be developed to address the specific concerns of survivors. Trochim et al. (2004), working with the Hawaii Department of Health, used GCM to plan a state-wide health improvement initiative. Unlike Hydeman et al.’s study, which focused on the needs of a particular participant group, this study involved a broad range of participants who were stakeholders in the area, including health professionals, leaders from community groups, grassroots leaders, and experts in community and systems change (Trochim et al. 2004). The study examined factors influencing individual behavior towards physical activity, tobacco, and nutrition. Findings were developed into a health-improvement plan with specific objectives that were immediately implemented (Trochim et al. 2004). The authors’ study – discussed in detail later in this chapter – used GCM to examine the sexual and reproductive health and rights decision-making of migrant and refugee youth in Australia.
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Strengths of GCM
Trochim and Kane (2005) describe four key characteristics that make GCM particularly valuable in healthcare research. Firstly, GCM methods integrate multiple differing perspectives from participants of diverse interests and expertise. This core aspect of GCM allows healthcare problems to be examined from a broad range of viewpoints. As such, GCM methods do not reduce issues to a single perspective or narrative. To properly answer complex public health questions, an approach that allows for diverse, sometimes opposing, viewpoints and experiences is necessary. Secondly, GCM methods include the rigor and objectivity required of health research through the use of multivariate statistical techniques. Thirdly, GCM produces a series of maps that visually represent the compound perspectives of the study group. Importantly, these maps provide a visual representation of group conceptualization without erasing the heterogeneity and diversity of perspectives. Finally, the resulting maps provide clear guidelines and frameworks for action: GCM produces actionable outcomes which can guide program and intervention development. Walker et al. (2014) highlight the participatory nature of GCM as the primary factor that makes it a valuable public health research method. As noted, this aspect of GCM means that participants – or, in other words, communities – have control and possession of actionable outcomes, which in turn increases the effectiveness and uptake of said outcomes.
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Limitations of GCM
Like any methodology, GCM has certain drawbacks and challenges. Firstly, GCM requires specific resources and/or expertise that may pose a barrier to researchers. Doing GCM well requires practical capacities for carrying out the research design, technical resources to manage the specific data collection and analytical tasks, and engagement expertise to ensure participants are supported through the entire process. GCM includes complex multivariate statistical analysis that requires computer-based software (Kane and Trochim 2007). The Concept System ® groupwisdom™ software (2022) is specifically designed to run such analysis and can be used by researchers without specialized statistics training. Using this software, GCM is extremely accessible for researchers from a range of disciplinary backgrounds. Concept Systems software streamlines not only the analysis stages but all GCM stages (The Concept System ® 2022). The Concept System ® software, however, requires the purchase of a license(s) that may not be feasible depending on research budgets. Alternately, data processing software such as SPSS (IBM Corp 2020) may be used to run analysis, as well as the myriad multivariate analysis programs available online (Kane and Trochim 2007). For this, extensive knowledge and experience in running multivariate analysis are required. A research team choosing to use one of these analysis methods would thus need an experienced statistician. Having an interdisciplinary research team that includes statisticians as well as researchers with other expertise is highly useful, particularly for public health research which ideally incorporates myriad perspectives and stances. Nevertheless, finding researchers with the right expertise is a restriction that must be acknowledged. Similarly, the research team must also have a comprehensive understanding of concept mapping processes. Familiarizing oneself with GCM methods requires research and, ideally training, which can be both time-consuming and resource-intensive. GCM methods also run the risk of participant fatigue (Walker et al. 2014). While allowing participant input and engagement at every stage makes GCM a truly participatory methodology, this can lead to participant burn-out. In-person workshops can be time-consuming. Large numbers of participants can also be difficult to organize and instruct. Moreover, should the project be run in-person, significant planning and organizing is required to set up spaces and times for data collection activities. In-person projects also limit the participant base to those in geographical proximity to the researchers. GCM can be instead completed virtually via web-based technology. This removes geographical obstacles, potentially allowing a broader participant base. Web-based technology can also help prevent participant fatigue, as activities can be completed gradually over a period of time rather than having to be completed in one sitting. However, while virtual methods may be easier for geographically disparate groups and require less in terms of organizing physical meetings, online platforms may impede participant engagement. Furthermore, virtual methods do not allow the same group dynamics as in-person data collection (Walker et al. 2014). Thus, process results or outcomes that surface from engagement and interaction may be limited in virtual data collection.
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Process: Stages of GCM Method
There are six primary stages involved in concept mapping, as summarized in Fig. 1: planning, generation, structuring, analysis, interpretation, and utilization (Kane and Trochim 2007).
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The first stage of a GCM project involves the finalization of the project plan. During planning, researchers must clearly establish and define the aims and desired outcomes of the project, develop a corresponding focus prompt, identify participants, and determine the project timeline. Researchers outline desired outcomes and aims Fig. 1 Group concept mapping stages
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of a project and develop the project focus based on these outcomes. Once established, the focus is transformed into a “tightly aligned” prompt statement or question that will form the basis of the GCM activities (Kane and Rosas 2018, p. 24). Typically, the focus prompt is phrased as a directive or sentence-completion prompt. The prompt should be straightforward, written in simple language, and free from jargon. Further, the prompt statement or question should focus on a single concept, as double-barrelled prompts lead to confusion and loss of detail in responses (Kane and Trochim 2007).
5.1.1 Rating Questions While defining the project outcomes, researchers also begin defining rating and participant demographic questions which are performed during stage 3 (structuring). Rating questions and scales are determined in line with desired goals, with a particular focus on who will be using the results and how. Rating questions are developed to measure any variable of interest to the given project, though an importance rating as such is particularly common: Rate each statement in terms of importance on a scale of one to five, with one being ‘not at all important’ and 5 being ‘extremely important.’
5.1.2 Participants Finally, participants are identified and recruited based on desired research outcomes. Kane and Trochim (2007) note that having a diverse participant group, consisting of a range of individuals associated with the research area, is ideal for conceptualization. GCM allows for and encourages the representation of a range of perspectives from individuals belonging to different groups that are engaged with the issue in question. For a given topic, the group of participants will ideally include stakeholders and interested parties that are engaged with the issue in different ways. Fundamental to this pluralism is the belief that all parties that are invested in an issue hold particular expertise, regardless of their profession. For public health research, this means looking beyond health professionals and engaging patients, families, caregivers, non-medical staff working in health spaces, community members and leaders, policymakers, funding bodies, researchers, and academics. However, where research aims demand, GCM can also be performed with a homogenous participant base (Kane and Trochim 2007). GCM methods do not prescribe a particular number of participants: sample size again depends on research aims. Successful GCM projects have been completed with as few as 8–15 participants, while others have had hundreds (Kane and Trochim 2007). Sampling methods again are up to researchers’ discretion depending on desired aims and outcomes. Generally, however, purposive sampling is an ideal method (Liamputtong 2020), as it allows for the final concept maps to represent the full range of diverse ideas and perspectives relevant to the issue (Kane and Trochim 2007).
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Stage 2: Generation
5.2.1 Idea Generation Through Brainstorming Following the preparation stage, the actual concept mapping process starts with the generation phase (Trochim 1989). The aim of the generation phase is to produce a set of items that encompass the entire conceptual range of the topic. Most commonly, idea generation is accomplished through brainstorming activities in which participants respond to the focus prompt. The brainstorming method chosen can be decided based on research outcomes, resources, and feasibility: brainstorming can be completed in-person or remotely via the Internet, phone, or other communication methods; group sessions or individual responses can be used. Irrespective of the method, participants should be instructed to respond to the focus prompt with as many individual statements as possible, keeping each brainstormed statement to a single idea. While brainstorming is commonly used and holds myriad benefits (Kane and Trochim 2007), idea generation can be achieved through other data collection methods – including in-depth interviews and focus group discussions (Liamputtong 2020) – or through a combination of brainstorming and other methods. Again, this is dependent on structural factors – such as resource accessibility and timelines – and research outcomes. For public health research projects, there are cases in which other methods of idea generation may be more suitable for the given research goals. In their study of African American and Hispanic men’s prostate cancer screening decision-making, McFall et al. (2008) used data extracted from key informant interviews. Additionally, Anderson and Slonim (2017) have discussed adaptations to typical GCM generation processes specifically for public health research such as conducting multiple brainstorming sessions over time and generating statements from literature reviews, reports, and other relevant documents. 5.2.2 Idea Synthesis Once ideas have been generated, idea synthesis is conducted to refine the generated data into a manageable statement set. The refined statement set will form the basis of the activities in the structuring stage (see below). There are no strict limits on the number of statements. However, as larger statement sets can lead to data repetition and make structuring activities more cumbersome, time-consuming, and risk participant fatigue, a set of 100 statements or less is ideal (Kane and Trochim 2007; Trochim 1989). The aim of idea synthesis is to produce a manageable and comprehensible set of distinct ideas relevant to the research topic, with each statement being a single idea (Kane and Trochim 2007). Ideally, this process results in a final set of statements that are representative of the content domain produced during idea generation (Kane and Rosas 2018). Synthesis can be conducted by the research team, or by the participant group, or by selected participants as facilitated by the researcher. Idea synthesis can be achieved through a simple process of coding and editing the original raw statement set. Statements are coded by assigning keywords and then grouping keywords into themes/topics. From here the set can be cut down, firstly removing
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irrelevant and duplicate/similar statements. A systematic data reduction process that includes coding techniques helps ensure that the final statement set encompasses the entire conceptual domain of the research topic. Statements should also be edited for clarity and comprehension: correcting grammatical and spelling errors, removing jargon, simplifying language, and ensuring the statements appropriately respond to the focus prompt. Statements that contain two ideas can be split into two separate statements.
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Stage 3: Structuring
The structuring stage of GCM consists of participant sorting and rating activities using the final synthesized statement set. At this stage, participants also complete demographic questions relevant to the research topic. These activities can be completed in-person with researchers holding sessions for participants to complete activities, virtually via online software, or both in combination.
5.3.1 Sorting The sorting activity requires participants to sort statements into piles or groups based on perceived similarity. Each participant is provided with the refined statement list and instructed to individually sort the statements into groups based on what “makes sense” to them (Kane and Trochim 2009). Participants are instructed to label each pile based on the content. Generally, participants can group statements in whatever way makes sense to them, so long as statements are grouped based on conceptual similarity. However, all statements cannot be sorted into one single pile, nor can every statement be its own individual pile (though some statements can be grouped by themselves), and a statement cannot be placed in more than one pile (Kane and Trochim 2007, 2009). Participants should be instructed not to group statements based on value labels such as “importance” or “relevance,” but on similarity. Moreover, miscellaneous or “other” piles with disparate statements that participants could not fit elsewhere should not be created (Kane and Trochim 2009). 5.3.2 Rating The second structuring activity involves rating each individual item of the statement list, usually on a value or opinion rating. As discussed above, rating questions are determined by researchers based on desired outcomes. Ratings allow researchers to examine differences of opinion and values given to each of the generated statements (Kane and Trochim 2009). Typically, rating questions will take the form of a Likert-scale, although scaling options are flexible and can be aligned with the study purpose. Common rating questions include importance, usefulness, and feasibility. 5.3.3 Participant Questions Demographic questions are used to perform subgroup analysis to examine the association between demographic characteristics and the concepts/themes (see analysis section). Data collected depends on research aims.
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Stage 4: Analysis
The analysis stage incorporates qualitative data obtained during the previous stages with quantitative statistical analysis (Kane and Trochim 2009). Analysis transforms participant sorting and rating data into concept maps in three core steps: (1) the creation of a similarity matrix, (2) multi-dimensional scaling (MDS), and (3) hierarchical cluster analysis. Analysis can only feasibly be performed through computer programs. The groupwisdom™ platform has been explicitly designed for this process (The Concept System ® 2022). However, programs such as SPSS, as well as a range of online multidimensional scaling software, can be used.
5.4.1 Similarity Matrix The similarity matrix is a square matrix that indicates the number of participants who sorted each pair of statements together – i.e., how many times each statement was grouped with another statement (Kane and Trochim 2007, 2009). Each participant’s sorting results are put into a square matrix of as many rows and columns as statements, with statement numbers across both axes. Statements sorted together are indicated by a 1, and statements that were not grouped together are indicated by a “0.” The matrices for each individual are then combined to produce a group similarity matrix, which again has statement numbers across each axis. The numbers within the group similarity matrix indicate how many participants grouped each pair of statements together. A similarity matrix can be constructed using general statistical software or using the specific groupwisdom™ program. 5.4.2 Multidimensional Scaling (MDS) Following the production of the similarity matrix, MDS is used to create a point map, where each statement is represented by a point on a map. MDS visually represents similarity within a dataset by presenting individual cases as points on a map, with distance between points indicating the similarity level. Similarity is indicated by proximity. MDS results in a two-dimensional point map where each point represents a statement and statements that were frequently grouped together by participants are closer together on the map, and those grouped together with less frequency are positioned further apart. 5.4.3 Bridging/Anchoring Analysis Bridging and anchoring analysis refers to the positions of statements on the map and whether a statement is a “bridge” (having been sorted with statements spanning across the entire map) or an “anchor” (having been sorted largely with statements in its immediate vicinity). A bridging statement links distant areas on the map, while an anchoring statement reflects the conceptual content of the other statements around it (Kane and Trochim 2007). This analysis can provide a better understanding of the final map and the relation of different concepts. 5.4.4 Hierarchical Cluster Analysis The final piece of analysis to create the concept map is to transform the point-map into a cluster-map by drawing boundaries around points that are conceptually
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similar. Hierarchical cluster analysis (HCA) using Ward’s Algorithm is applied to the multidimensional scaling data and used to create clusters of points that are conceptually similar. Ward’s algorithm is an agglomerative approach to HCA: it begins with each statement as its own individual cluster and successively agglomerates clusters until there is only one single cluster (Kane and Trochim 2007, 2009). At each stage, the number of clusters is reduced by one through a process of merging two clusters that are closest together. From this cluster analysis, a cluster solution – that is, the number of clusters in the final concept map – must be chosen. The process of deciding the final cluster solution is qualitative: there is no right number of clusters nor any formula for determining this number. Instead, the decision is dependent again on research aims, particularly the level of detail and specificity desired, and the conceptual content of the clusters in each cluster solution. In a pooled analysis of 69 GCM studies, Rosas and Kane (2012) report the mean number of clusters as 8.93, with a range from 6 to 14 clusters across all studies. A cluster solution with fewer clusters will provide broader, more overarching concepts while one with more clusters will have more detail and specificity. Too few clusters and the concepts will likely be too broad; too many clusters and the map may be too specific to be useful. Determining the cluster solution can be done by members of the research team alone or with a small focus group of participants providing feedback. A simple method for making the final decision is as follows (Fig. 2). Once a labelled cluster solution is finalized, the result is a two-dimensional map that depicts the main concepts relevant to the research issue, as conceptualized by the participant group.
5.4.5 Other Analysis Once the concept map has been created, additional analysis can be run to incorporate rating data. These analyses are used to provide further data in the interpretation stage (Stage 5). Rating data is aggregated across participants for each statement and, in turn, each cluster. This produces point rating maps and cluster rating maps which represent, respectively, the average rating of each statement (point) across the entire participant group and the average rating of each cluster (Kane and Trochim 2007). Additionally, rating data can be used to produce pattern matches, which compare average cluster ratings. A pattern match can compare the average ratings between different demographic groups or can be used to compare two different rating variables or points in time. Go-Zones displays – bivariate quadrant graphs using rating data – can also be developed. Go-Zones illustrate the average rating of each statement compared to other statements. Typically, pattern matches are used to provide analysis between clusters, while Go-Zones provide more detail within single clusters (Kane and Trochim 2007).
5.5
Stage 5: Interpretation
Interpretation is a key part of the GCM process in which participants/stakeholders assess and examine the maps and graphs produced in the analysis stage. The
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Fig. 2 Steps for determining the cluster solution
interpretation stage is intended to garner participants’ understanding of the maps and how they should be used. Typically, the research team will hold live interpretation sessions with participants to present data. In this session, researchers systematically present the results, beginning with the synthesized statement list and then each of the different maps, clusters, and labels, pattern matches, and Go-Zones.
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Participants are asked to provide feedback on the content and comprehensibility of the maps, as well as the implications of research findings. In some cases, the interpretation is the final stage in the GCM process. Typically, however, utilization – putting the findings into action – follows (Kane and Trochim 2007).
5.6
Stage 6: Utilization
The final phase of GCM is putting research into action. The direction taken depends on research aims and goals determined in the planning phase. The final concept map will, ideally, provide key areas for action, and ratings can be used to further guide action. Importance ratings, for example, will illustrate which concepts are most important to the participant group and, as such, indicate which areas to focus on (Kane and Trochim 2007).
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Case Study: Migrant and Refugee Youth Sexual and Reproductive Health and Rights Decision-Making
The case study illustrates the use of concept mapping to examine sexual and reproductive health and rights (SRHR) among migrant and refugee youth (MRY) living in Western Sydney, Australia.1 The authors will demonstrate how concept mapping methodologies can allow a rights-based approach to health research below. Conducted under pandemic conditions that precluded in-person data collection, this study illustrates the viability of GCM as a method of undertaking participatory research under pandemic restrictions. Data collection was carried out virtually using The Concept System ® groupwisdom™ software (The Concept System ® 2022).
6.1
Planning
The objectives of the study were to examine sexual and reproductive health (SRH) decision-making and agency among MRY and to identify barriers and facilitators that shape youth’s SRH choices. As such, this study sought to examine MRY rights understandings and attainment regarding SRH. The broader desired outcomes were to improve SRHR outcomes for this population, guided by the GCM research findings. These objectives were transformed into a simple sentence completion prompt with a lead-in sentence providing participants with context: People have different ideas about sexual and reproductive health. Different things may influence the choices we make in our sexual life. Something that influences the way I make choices about my sexual life is. . . . 1
See Napier-Raman et al. for further details on this study and research findings (forthcoming).
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At this stage, two main participant groups were defined: (1) migrant and refugee youth, aged 16–26, living in Greater Western Sydney, Australia, and (2) key informants in the subject area including clinicians, service providers, researchers, and academics. The decision to use only two groups was informed by our research objectives. The primary aim of the research was to examine MRY decision-making and agency, and therefore MRY voices were considered to be of primary importance. A combination of snowball and purposive sampling was deemed best to reach participants (Liamputtong 2020). Due to pandemic restrictions, recruitment was completely virtual. Participants registered via a Qualtrics survey and were then emailed with further project information and instructions. The link to the registration survey was disseminated through personal and professional connections, health and social services, and via social media. The researcher team also defined five simple demographic questions to be used: participant gender, age, ethnic/cultural background, employment status, and SRH service use. Two rating questions were developed. Firstly, importance ratings, using a 5-point Likert scale, were chosen. Secondly, an impact rating from 1 to +1 was defined for participants to rate whether each statement had a negative ( 1), positive (1), or neutral (0) impact on their sexual health decision-making. These two ratings were closely aligned to the research aims: identifying which factors are most important in informing MRY sexual health decision-making, and secondly, whether each factor has a negative or positive impact on decision-making or, in other words, acts as a barrier or facilitator.
6.2
Generation
The idea generation phase consisted of online brainstorming via groupwisdom™. Participants were instructed to respond to the prompt as many times as possible with multiple statements, with guidelines that each response should be brief and focus on one point and to start a new response for each new point. Key informants were given a re-worded prompt with “I” and “my” replaced by “migrant and refugee youth” and “their” so that their responses also concerned MRY decision-making. Statements were also extracted from key literature and past focus groups from the broader study to ensure a comprehensive representation of key decision-making factors. The statements from secondary research were all extracted from quotes by MRY in other studies, ensuring that it was participant voices and perspectives rather than researchers being used. The online brainstorming platform on groupwisdom™ simulates the collaborative nature of in-person brainstorming. As participants entered responses to the focus prompt, they were able to see the responses made by other participants. A total of 126 raw statements were generated. Following idea generation, the research team carried out idea synthesis. Firstly, all major grammatical, spelling, or logical errors were corrected. Duplicate, incomplete, irrelevant, and unclear statements were removed. There were a significant number of statements that had to be split as they contained numerous ideas. The high
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number of these responses may have been due to the inability to oversee online brainstorming. Statements were then assigned keywords and grouped into thematic codes by the researcher (SNR) to ensure full representation of all major themes in the final statement set. Subsequently, the research team reviewed codes and cooperatively selected a final set of 64 unique statements.
6.3
Structuring
A total of 42 MRY (including 31 from the generation phase) and 13 stakeholders participated in the structuring phase. This phase included sorting and rating the refined statement set. For sorting, participants organized statements into groups and labelled each group. Participants were instructed to sort statements based on similarity and common thematic content, not importance or value-based groupings. Participants then rated statements based on importance and impact. Firstly, participants gave each statement an importance rating using a 5-point Likert scale, where 1 is relatively unimportant and 5 very important. Secondly, participants rated whether each statement had a positive or negative impact on MRY decision-making, using a scale of 1 through 1, with 1 being negative impact, 0 being neutral or no impact, and +1 being positive. The research team assessed sorting and rating data for usability. Sorting data that was incomplete was removed, as was data from participants who did not follow sorting instructions. For example, several participants grouped miscellaneous statements in “other” piles despite instructions to the contrary. Similarly, rating data were assessed to determine whether participants had correctly completed. Where it was clear participants had not attempted rating correctly (i.e., by rating every statement the same), these responses were excluded. A crucial benefit to this virtual data collection method was anonymity. Given the sensitive nature of our research, the authors felt that regardless of pandemic restrictions, the anonymity allowed by virtual data collection was a significant asset to the research process.
6.4
Analysis
Concept Systems software was used to create graphical representations of the data through multidimensional scaling (MDS) and hierarchical cluster analysis (HCA) methods explained above. Additionally, Concept Systems software automatically calculates a stress value to assess the overall goodness of fit of the point map. Stress values range from 0 to 1, with values closer to 0 indicating a better fit. The point map generated from participant sorting data was used as the foundation for subsequent concept maps. Tenets of parsimony were followed in selecting a solution: a six-cluster map was deemed the most simple, interpretable configuration that still held sufficient detail
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and conceptual coherence. To further coherence, clusters were reviewed for incongruous outlier statements that would be better placed in adjacent clusters. Two statements were shifted from their original cluster to neighboring clusters. Full details on the analysis and findings are available in Napier-Raman et al. (forthcoming).
6.5
Interpretation
Interpretation in this study consisted of a zoom session held with a select number of MRY. The session was conducted on Zoom and was recorded with participant consent. Five MRY who had completed brainstorming, sorting, and rating were invited to discuss the results. Firstly, MRY asked to examine clusters and suggest cluster labels. They were then presented with the labels developed by the research team and discussed points of difference. In line with participant suggestions, changes were made to the initial labels for three clusters. Additionally, participants were shown the final cluster-rating maps and pattern match and discussed how these aligned with their understandings. The interpretation session provided a means for assessing the validity of the final maps and the GCM process. Participants responded positively to the maps and findings, asserting that all the key areas informing their SRH decision-making were represented. Moreover, MRY found the final concept maps comprehensible and easy to interpret. MRY participants also had the opportunity to provide their explanations for the findings, particularly the differences between the two main participant groups (youth and key informants/professionals). MRY were finally asked to discuss ideas for utilizing findings and possible avenues for policy and programming.
6.6
Utilization
The resulting maps will be used to inform policy and programming suggestions that are in line with MRY priorities and values. Briefly, six main concepts informing MRY decision-making were found: sexual risk and safe-sex practices, media influences, education and health service access, emotional intimacy and comfort, family and cultural influences, and social communication and observation. Of these, emotional intimacy and comfort and safe-sex practices were most important to youth when making decisions. These preliminary research findings provide a better understanding of the factors informing MRY decision-making, and therefore areas for services and programming to focus on.
6.6.1 Benefits of GCM in This Study This study demonstrated the value and efficacy of using GCM methods for public health research. GCM was highly effective in elucidating how MRY make SRH
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decisions. A rights-based study such as this study, examining agency and decisionmaking, requires a compatible methodological approach. GCM methods ensure that participants have agency within the research process, and thus were ideal for this research. Having participants involved at multiple points through the project allowed for increased reflexivity into the research process and findings. As such, the authors could be certain that their findings accurately reflect the perspectives of the community that this research set out to support. Another aspect of GCM that was particularly salient to the research aims was the production of easily comprehensible maps and graphs. GCM gave the research team a means for expressing complex findings in a simple and understandable manner. This is particularly useful for a population – such as migrant and refugee communities – with different language backgrounds, educational experiences, and literacy levels. The results of this study can be directly presented to and used by migrant and refugee communities. Given that language barriers can be significant in preventing SRH service engagement and care for migrant and refugee communities (Maheen et al. 2021; Mengesha et al. 2016), having a predominantly visual means for presenting data is extremely beneficial. In that effect, the research findings of this study are accessible to a broad population. Finally, it would be remiss to not discuss the ways GCM allowed pandemic restrictions on research to be overcome. The COVID-19 pandemic has restricted and altered the way research, particularly in the social sciences, can be conducted (Howlett 2022). Global public health crises such as the COVID-19 pandemic can lead to services, care, and issues in unrelated health areas such as SRH being overlooked and ignored (Mackworth-Young et al. 2022). Having a means for continuing research and action in these areas is crucial. GCM proved to be a highly adaptable, flexible method. Using GCM allowed the authors to conduct SRH research among an under-served and under-represented population, despite the restrictions and challenges of a global pandemic. Nevertheless, socially distanced research did have limitations. The authors found that virtual methods reduced their ability to fully instruct and support participants as they completed activities. Unlike live in-person brainstorming sessions where participants could be reminded of instructions and informed if they were not following them, virtual data collection has limited opportunity for researcher maintenance. Similarly, mistakes and ineligible responses during the sorting and rating activities in this study may have been due to the lack of ability to guide participants in real time as they completed activities.
7
Conclusion and Future Directions
GCM is a mixed-methods, participatory approach to research that can be highly useful for addressing complex public health issues. This chapter provides an introduction to group concept mapping: a mixed-methods, participatory approach to research that combines qualitative conceptual data with rigorous statistical analysis. GCM provides a means for engaging participants throughout the research process, resulting in truly participant-oriented research.
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GCM has a number of strengths as a method for conducting global public health research. It is a participatory method that empowers and engages participants. The research case study demonstrates the significant benefits of using GCM, particularly when engaging populations who are underrepresented. The adaptability of GCM was crucial to successfully conduct research under pandemic conditions. As a methodology, the cost of GCM software and licenses is a limitation. The highly participatory nature of GCM also increases the chance of participant fatigue. Finally, while GCM allows for virtual methods of data collection, these have limitations due to the reduced interaction between researchers and participants. Nevertheless, GCM is a highly effective method for conducting public health research with actionable, participant-owned outcomes. GCM has great potential for addressing current and emerging global public health issues. Contemporary researchers are faced with increasingly complex and intractable public health issues, impelled by the societal and environmental transformations brought by globalization. In this climate, methodologies such as GCM that enable researchers to fully grasp and examine the nuances and complexities of global health problems are invaluable. GCM provides researchers with the tools to examine public health issues as they are truly experienced: by a group or community, or the public. It allows for multiple perspectives, both through embracing a diverse participant-base, but also through utilizing interdisciplinary tools and methods. Moreover, GCM delivers actionable research outcomes, allowing public health researchers to put findings into practice. The past 2 years of the global pandemic have underlined the importance of global public health research while illustrating the need for such research to be dynamic, practical, and adaptable. GCM provides a method for conducting research even as the world and global society continue to undergo drastic changes, and centers this research on those who matter: the public.
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Trochim WMK, Kane M (2005) Concept mapping: an introduction to structured conceptualization in health care. Int J Qual Health Care 17(3):187–191. https://doi.org/10.1093/intqhc/mzi038 Trochim WMK, Linton R (1986) Conceptualization for planning and evaluation. Eval Program Plann 9(4):289–308. https://doi.org/10.1016/0149-7189(86)90044-3 Trochim WMK, Milstein B, Wood BJ, Jackson S, Pressler V (2004) Setting objectives for community and systems change: an application of concept mapping for planning a statewide health improvement initiative. Health Promot Pract 5(1):8–19; discussion 10. https://doi.org/10. 1177/1524839903258020 Vaughn LM, Jones JR, Booth E, Burke JG (2017) Concept mapping methodology and communityengaged research: a perfect pairing. Eval Program Plann 60:229–237. https://doi.org/10.1016/j. evalprogplan.2016.08.013 Villa-Torres L, Svanemyr J (2015) Ensuring youth’s right to participation and promotion of youth leadership in the development of sexual and reproductive health policies and programs. J Adolesc Health 56(1):S51–S57. https://doi.org/10.1016/j.jadohealth.2014.07.022 Walker RE, Jones JR, Burke JG (2014) Concept mapping for community perceptions. In: Burke JG, Albert S (eds) Methods for community public health research: integrated and engaged approaches. Springer Publishing Company, New York Wallerstein N, Duran B (2010) Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health 100:S40–S46
Experience-Based Codesign (EBCD) for Sensitive Research Elaine Craig, Kim Heyes, Kelly Bracewell, Alina Haines-Delmont, Joy Duxbury, and Khatidja Chantler
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Creating Trigger Films . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Identifying Touch Points in Individual Case Study Films . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 Clustering Touch Points into a Collective Voice Trigger Film . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Polishing the Films . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Validating the Trigger Films . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Cross-References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
In this chapter, the reader will learn to create poignant lived experience “Trigger Films” in research using Experience-Based Codesign (EBCD). EBCD is an eightstage methodology developed from participatory action research, learning theory, and narrative-based approaches to change. It is used to improve the experience of both the people accessing a service and the staff through shared decision-making. All parties work as equal partners to understand that experience and to prioritize and codesign service improvements creating lasting change. During the HALT project, “Learning from Domestic Homicide Reviews Using EBCD,” the authors created three Trigger Films with ten victims/survivors of domestic violence and seven family members bereaved by domestic homicide. In addition to other data collected in the project, these films were shown to service providers, the Home E. Craig (*) · K. Heyes · A. Haines-Delmont · J. Duxbury · K. Chantler Manchester Metropolitan University, Manchester, UK e-mail: [email protected]; [email protected]; [email protected]; [email protected]; [email protected] K. Bracewell School of Social Work, Care and Community, University of Central Lancashire, Lancashire, UK e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_64
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Office, government officials, and key stakeholders to cocreate and implement service improvements to prevent future homicides. This chapter focuses on stage three of EBCD, the creation of the Trigger Films. By amplifying the victims/ survivor experience through film, the staff gets to see services through their eyes. This allows victim/survivor experiences to not only inform but drive the agenda for change. It provides a platform for direct, honest conversation between the staff and victims/survivors to raise areas of concern or missed opportunities and celebrate and replicate areas of success. To do this, this chapter will demonstrate how to create Trigger Films by first identifying individual touch points in individuals’ stories that are then thematized into chapters and edited into three high-impact collective voice Trigger Films. Keywords
Experience based codesign · Film making · Domestic homicide · Domestic violence · Cocreation · Coproduction · Sensitive research · Participatory action research
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Introduction
This chapter discusses how to create poignant lived experience “Trigger Films” in research using Experience Based Codesign (EBCD). While the full methodology will be discussed, the primary focus will be on stage three of EBCD the Trigger Film creation. Despite this stage being the most labor-intensive stage of EBCD, to date, there is no published guidance on how to create Trigger Films. To do this, this chapter will discuss all eight EBCD stages, and demonstrate how to create Trigger Films by first identifying individual touch points in individuals’ stories that are then thematized into chapters and edited into three high-impact collective voice Trigger Films. EBCD is an eight-stage methodology developed by combining participatory action research, learning theory, and narrative-based approaches to change. It is used to improve the experiences of both the people accessing a service and the staff providing the service through shared decision-making. All parties work as equal partners to understand that experience and to prioritize and codesign service improvements to create lasting change. EBCD gathers experiences from both service users and staff through in-depth digital narrative interviewing, observations, and stakeholder discussions. Trigger Film(s) are created from the interviews conveying in an impactful way, how participants experience events, services, and processes within that service setting. EBCD has been integral to the patient experience movement. Many of the tools used to capture experience, take surveys, for example, are not always fit for purpose. They may capture a rough measurement of the experience but fail to help understand the experience itself. To date, many health service change initiatives have been limited to engaging either service users and family members or healthcare providers
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but rarely engaging with both. EBCD offers both alternatives. Broadly speaking, EBCD’s overarching aims are to explore the performance of the service (how efficiently and effectively the service does the job of treating the recipient? Is the service fit for purpose?), the engineering of the service (how safely, well-engineered, and reliable the service/activity is for the staff and service users?) and the aesthetics of the experience (how the whole interface/interaction between the recipient and service is fashioned and managed). The approach was initially designed for and within the United Kingdom’s National Health Service to develop solutions that offer patients a better experience of treatment and care. However, it is increasingly being used internationally and in a variety of settings outside of a health context. For example, during our HALT project, “Learning from Domestic Homicide Reviews Using EBCD,” the authors created three Trigger Films with ten victims/survivors of domestic violence and seven family members bereaved by domestic homicide. A Domestic Homicide Review is a multiagency review of the circumstances of the death of a person aged 16 plus that looks to have resulted from violence, abuse, or neglect by either a relative, a current or previous intimate relationship, or member of the same household. Domestic Homicide Reviews have been a statutory requirement in the United Kingdom since April 2011. The interdisciplinary learning from HALT spanned the charity abuse sector, social work, mental health, education, housing, policing, safeguarding, and politics. Not only is EBCD used to improve existing services, but it is now being used inductively to design new innovative interventions for underserved populations in both health and social care settings across the lifespan. EBCD’s key features are that it uses a storytelling approach to focus on experience and emotions rather than attitudes or opinions. It provides a service user engagement model to understand their needs, wants, and preferences to translate into high quality improvement activities. EBCD offers an alternative perspective allowing staff to see the service through their service users’ and families’ eyes. It has been described by participants as an empowering method that provides direct, honest conversation that raises both areas of success and areas in need of improvement. This emotive method uniquely is an approach that uses both the heart and the head. While focusing on personal experiences and emotions (the heart), the method also requires analysis to identify touch points (the head) within the data. The eight stages create a deliberate staged approach to help remove power imbalances and eliminate a blame culture. Before the authors focus on stage three, the editing of the Trigger Films, a brief overview of all EBCD stages is below. Further details of each stage can be found at www.pointofcarefoundation.org.uk inside the EBCD toolkit. Stage one is the ethnographic stage where researchers observe the services day and night to gain an in-depth understanding of what is happening daily. During this, it is key to note the daily challenges facing the service and significantly, identify the busy and quiet periods to inform stages two, four, and six (the interviews and events with staff members). Becoming part of the everyday running of the service will help recruitment and retention rates of participants. It also helps build trust for staff to speak openly in interviews knowing you have seen first-hand the challenges of the
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service. This stage is also key to help inform the topic guide and prompts for stage two interviews. Stage two is the narrative interviews of both the staff and the service users. It is important to bear in mind staff may be reluctant to take part and have concerns about critiquing their workplace or worried about receiving criticism from service users. Hence, openly addressing any foreseeable concerns and building trust during stage one is key. Ensuring interviewees represent different management levels of the service will help build as holistic a view of the service as possible. As EBCD aims to amplify the voice of the service users, staff interviews are audio recorded and not filmed. These are then analyzed, and sense checked during the staff feedback event, prior to being presented at the joint coproduction event. In parallel to this, the service users and family member interviews take place. These are the filmed interviews that will be edited into the Trigger Films. If the population being filmed is particularly vulnerable offering different anonymity options that can be applied after filming, during the editing process it will help with recruitment and engagement. For example, blurring/concealing their face, using a picture montage or animation instead of their face and replacing participants’ voice with an actor’s voiceover. These interviews are often analyzed twice. Firstly, the full interview is sent for transcription then analyzed and secondly via the film editing process for the Trigger Films. This is due to the amount of data often cut during the film editing process. The films and interview analysis are sense checked during the service users’ and family feedback event, then presented at the joint coproduction event. Stage three is the editing of the trigger films, which is the primary focus of this chapter. Despite this stage being the most labor-intensive stage of EBCD, to date there is no published guidance on how to create the Trigger Films. Dedicating this chapter to the Trigger Film creation fills a unique gap in EBCD methodological literature. Stage four is the two separate feedback events for (1) the staff and (2) the service users’ and family members. Researchers will start with staff events. This is a facilitated event where staff are invited to sense check the findings from their interviews and stage one’s ethnographic work. In addition, the feedback events give staff the opportunity to discuss and create key areas for change they would like to see within the service. That list is then reduced into four or five priority areas and taken forward to the joint coproduction event. The trigger films are not shown at the staff feedback event. Invitations to this event can be extended beyond the interviewees to the wider staff pool. This event also creates an opportunity for staff to raise and address any issue that may be unsuitable or unhelpful for the service users’ and family’s group, for example, complaints about management, funding issues, lack of supervision. These areas will need to either be addressed or agreed to be parked for the discussions to progress. Having key managers and decision makers present at this event will potentially help to solve any of these internal challenges as well as facilitate and implement long-term changes in the project.
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In parallel to this, the service users and family member feedback event takes place. The only significant difference with this event is that it would be the first-time participants that will watch the Trigger Films. If the project is of a sensitive nature adequate support should be inbuilt within all events as the content is often distressing and can be triggering. After viewing the Trigger Films, the facilitator encourages people to share their responses and leads an emotional mapping activity to highlight points in their journey they feel could have been dealt with better. This gives them the opportunity to create lists of their key areas for change and reduce that into four or five priority areas to take forward to the joint coproduction event. Adequate time should be planned after this event to make any minor edits to the Trigger Films prior to the joint coproduction event. Stage five is the joint coproduction event. This event brings the service users, families, and staff together to listen to each other’s experiences and perspectives and identify the key priorities to tackle collaboratively to make improvements. Here, the group watches and discusses the Trigger Films. The priority lists from both feedback events are shared and discussed in small groups with mixed numbers of staff, service users, and families in each group. The facilitator then brings everyone together to jointly narrow the priorities into three or four target areas of change. All participants are invited to join the codesign implementation groups that target the area of most interest/importance to them. Stage six is creating the codesign implementation groups. These groups are selfelected participants from the joint coproduction event. They are made up of service users, families, and staff who take one priority change area and look to design and implement solutions to that challenge. Stage seven is the running of the codesign implementation groups. This is an iterative process over a period of approximately 4–6 months where the groups pilot, evaluate, re-design, re-pilot, and reevaluate solutions to the challenge identified. All groups then report back their findings to the project lead so they can be presented at stage eight’s celebration event. Stage eight is the end of project EBCD celebration event. This stage involves presenting and demonstrating the outcomes of the whole project to all stakeholders and the wider public to show the value of the research. As EBCD is a method of high emotional and time investment from all parties, including the researchers, holding a celebratory event is a way of reporting on achievements, thanking everyone involved, and providing a clear project end.
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Creating Trigger Films
This chapter focuses on stage three of EBCD, the creation of the Trigger Films. Of all the EBCD stages, this is the most labor-intensive stage requiring a minimum of 6–9 months. Film editing software is required to complete this stage. Our team used an Apple editing software package called Final Cut Pro X. If there is no one on your team who can edit, additional time will need to be factored in for training and software familiarization. An additional 3–6 months would be recommended for this.
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This section of the chapter will include the purpose of the Trigger Films, identifying touch points to edit individual case study films, clustering touch points into collective voice Trigger Films, and polishing and validating the Trigger Films. The purpose of the Trigger Films is to amplify the service users’ experience and provide an opportunity for the staff to see their services through their eyes. This allows the service users to not only inform but drive the agenda for change. It provides a platform for direct, honest conversation between the staff and service users to raise areas of concern or missed opportunity and celebrate and replicate areas of success. In addition to this, filmed participants have reported the process of the film making helps them feel empowered by allowing them to become unsilenced and providing a platform on which they can share their experiences. Through the interview process, they begin to process their emotions and make meaning of their experiences all while often searching for and finding their voice. Involving participants in the editing process of their case study films helps them discover exactly what it is they want to say and what changes they hope to see as a result. This is a powerful way of not only validating the films but helps the service users build the confidence to speak and contribute amid the staff in the joint coproduction event. To break down the creation of the films, the authors will be drawing on their learning from the HALT study where they created three trigger films with ten victims/survivors of domestic violence and seven family members bereaved by domestic homicide. The first HALT Trigger Film is “The Victim/Survivor Voice.” This includes ten people describing their experiences of domestic abuse, and both the positive and negative service responses received. The “That Day” Trigger Film tells the domestic homicide stories of family members and powerfully conveys its impact. It is edited by weaving two/three different stories in and out of each other simultaneously. The final Trigger Film is “The Family Voice.” This film includes family members reflecting on the key moments/learnings/experiences from the Domestic Homicide Review process. The Trigger films can be accessed via the HALT website: www.domestichomicide-halt.co.uk in the resources and publications section. Typically, EBCD only requires one Trigger Film. The authors will explain in due course why they created an additional two films, how that helped facilitate conversations and eliminate blame in the joint coproduction event and potentially helped reduce the risk of re-traumatization.
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Identifying Touch Points in Individual Case Study Films
The first stage of the Trigger Film creation is to edit all interviews down into approximately 10–15 min individual case study films that capture the touch points within that participant’s experience. This requires the editor to focus solely on one interview at a time rather than looking for themes across the whole data set. Touch points are critical moments that often (but not always) carry an emotional tone within an individual’s experience. They often indicate moments of significance, positively
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and/or negatively, within that person’s journey. They are also the key learnings that speak to the aims of the project overall. In the HALT project touch points were moments that provided a greater understanding of a specific issue (e.g., what coercion/mind games are/look like), points of high emotion (e.g., if that had not happened or if they had not helped me I would have been dead) and, points of contact with services (both good and bad examples). Touch points are not about capturing the empirical truth of a phenomenon, they are about identifying key areas of discussion for the feedback and joint cocreation events. Touch points were noted initially both during and directly after the interview by the interviewer and the film maker independently. To help operationalize this stage to the full, unedited interviews were uploaded to the cloud. Two EBCD researchers independently watched the full interview once without taking notes. They then watched the full interview a second time using a timecode template to note exact touch points in that interview. This included the start and finish timecodes of the touch point and the topic of conversation. The original interview notes were then captured and added to that timecode template. After receiving the two touch point time code templates, the film editor can began editing each interview into their individual case study film. Having two researchers independently identify touch points added rigor to the validity of the touch points identified. The dilemma for the editor is that editing out the touch points alone would lead to a disjointed and fragmented film. The key to creating any impactful film is found within the storytelling. When remembering traumatic memories, the events that are recalled are rarely in chronological order. However, to create a cohesive story requires the editor to place the touch points into a chronological timeline that contextualizes the essence of the touch points in an order that can be understood by the audience. For the bereaved family members, this meant placing touch points into a story that began with the day they found out their loved one was murdered, then lead onto various stages in the Domestic Homicide Review process. For the victims/survivors of domestic violence, this meant placing the touch points within the context of their abusive relationship. To give a chronological uniform to the victim/survivors’ interviews, the editor started from when the person first met their partner, how the abuse manifested and escalated, when/how and who they turned to for help, the positive and negative responses they received, and then how they finally got out of the relationship. This requires the editor to find additional segments from anywhere in the interview that speak to or tell the story of that relationship and place them within that order. After that, touch points can then be placed within that relational timescale to tell a cohesive and impactful story. This process is carried out on all the individual interviews until a full set of case study films is created. As researchers, editing out such huge quantities of data does not come naturally. Therefore, to get the case study films down to approximately 10 min may require another layer of case study editing. One way of exploring what is of highest importance to the participant is by using the “one thing” question at the end of the
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interview. Each HALT interview closed with, “what one thing do you want to see changed from your experience?” Unsurprisingly, most participants answered with two or three things but ensuring the answer to this question was included in their case study film and in the collective voice Trigger Film helped to cut down any additional touch points from that person if the time was needed. It also meant their participation was meaningful, their experience represented, and their voice was heard. When looking for opportunities to cut case study interviews down, another area to consider is the replication of touch points across the whole case study set. Typically, touch points will begin to be repeated. While repetition can be validating, when watching a collective film of multiple stories, repetition to the audience can become tedious. Looking to see what points are repeated and who said it clearer/better is one way of editing down the footage. A point to be careful of with this editing option is to make sure every person is represented in some way in the Trigger Film. If one interview had 30 plus touch points and another only had 15 the editor often needs to play a balancing act to give adequate, equal airtime to each participant. Similarly, if the films are being presented alongside additional data from the project (such as the analysis from the full victim/survivor transcripts and/or staff interviews) another way to edit touch points is to only include ones that are not represented within the other data sets or saturated in existing literature. In addition to this, many sensitive research areas, such as abuse, come with a host of complexities that may be of importance to the participant but may not relate to the research questions being posed. For example, some of the victim/survivors in the HALT study shared other traumatic events that occurred in their lives that were not related to domestic violence (gang rape, childhood sexual grooming). While these events were important to the individual and do have links in research to domestic violence, those events (with the participants permission) were edited out. This is because either they did not directly address domestic violence and/or when attempting to include them they made the storyline of events confusing to the audience as the correlations between that and domestic violence were too complex to be condensed to do them justice. These links and ideas can be parked for potential future research project ideas. When case study films were drafted in HALT, participants were given an opportunity to view their individual case study film online and make any changes that they wanted. This included cutting anything they no longer wanted to share. At this point, the authors would take the time to discuss how accurate the chronological order or events was and if there needed to be any timeline changes. They also discussed and agreed that any edits from the life events that were not relevant to the research would not be in the Trigger Film but they would include them in their case study film that the participant receives as a keepsake from the project. Timing these conversations and agreement before beginning to cluster the touch points into a collective voice Trigger Film is imperative as any request to edit segments further down the line can significantly disrupt the Trigger Film story. Now the individual case study films have been created and validated by the participants, it is time to move away from individual editing into the first stages of collective voice editing.
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Clustering Touch Points into a Collective Voice Trigger Film
The main difference between the individual cases study films and the collective voice Trigger films is that a person’s experience is transformed from a whisper to a shout. In silo one person’s experience can often be ignored, go unheard, or be excused. When that experience is captured, amplified, and is placed alongside many others with similar experiences and then conveyed in a powerful story, people are forced to sit up and take note. If that experience highlights societal failings that lead to social injustices not only do people listen, but they are often called, compelled, and moved to take action. That depicts the power of the Trigger Films. Some key overarching principles to keep in mind when creating the Trigger Films are to make sure each participant is represented and to ensure that each participant is happy with what is being included from their case study into the Trigger Film. If at the Feedback Event a participant wishes to remove something of their case study film included in the Trigger Film, this has the potential to cause significant disruption and fragmentation to the storytelling thread of the whole film. Keeping participants involved in their case study film creation is key to minimizing that disruption. When dealing with sensitive research, participant engagement also helps reduce the risk of traumatization. Watching back traumatic films for the first time is powerful and potentially re-traumatizing for the participant. If they are already familiar and have watched their case study through, the potential of re-traumatization is likely to be reduced. The aim of the Trigger Film is to create an emotional story of the experience that takes the audience on an emotive journey of highs and lows. This requires balancing out the number the of good and bad/poor examples of practice equally and ruthlessly editing each case study film again into approximately 3–5 min. Trigger Films are to be shown within a specific context, the feedback, and joint coproduction events. Therefore, it is beneficial at this stage to pause the editing and, with some initial ideas of the Trigger Film content, put together an indicative agenda for those events. This will help to iron out some practicalities that will place limits on the Trigger Film creation. A key example is discussing approximately how long you have allocated in the events for the film. This will be dictated by what other activities and data findings you would like to present at the event. Knowing this will give the editor a rough estimate of how long the Trigger Films need to be. At this stage, the HALT case study films gave a holistic oversight of the whole domestic violence journey from escalation, help seeking, and service response to fatality and the Domestic Homicide Review experience. Revisiting the aims of the project and assessing what parts of that journey are most critical for the group discussions, should in most cases help refine and target the touch points to include in the remaining Trigger Film creation. As the HALT project was about learning from Domestic Homicide Reviews to prevent future homicides, all parts of the journey were significant. The victim/ survivor’s voice for services improvement in domestic violence prevention is key. The homicide account provides a personal context to what is usually a faceless Domestic Homicide Reviews published and act as a wakeup call and reminder as to
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why the project was important. Lastly, the families’ voice to learn how to improve the Domestic Homicide Reviews processes and supports families better in their time of tragedy and loss. Through this discussion, the authors decided to create not one but three Trigger Films representing these three stages of the journey above. To create space for this within the feedback and joint creation events without compromising on the content, they created two types of Trigger Films; two mapping Trigger Films, and one single event Trigger Film. Mapping films replace some of the time in the events originally dedicated for the mapping activity. Mapping films use the chronological timeline created to contextualize the case study films and break that down or condense it into chapters. The touch points from all the interviews are then clustered into those relevant chapters. For example, all the case study films for the victim/survivors of domestic violence followed the same chronological uniform to contextualize the abusive relationship. This began from when the person first met their partner, how the abuse manifest and escalated, when/how and who they turned to for help, the positive and negative responses they received, and then how they finally got out of the relationship. When creating “The Victim/Survivor’s Voice” film, the authors condensed these relational stages into the following three chapters and clustered all the touch points from every victim/survivors’ case study film into one of the following: 1. What happened to me – touch points included types/examples of abuse, abuse escalation, and disclosures. 2. Service response and experiences – touch points included good and bad examples from multiple services including education, mental health, police, housing, probation, homeless, and education. 3. The one thing I would change – touch points included the individual’s take home/ priority message for professionals. For “The Families Voice” Trigger Film, the authors mapped the families’ journey post domestic homicide into five chapters: 1. Missed opportunities – touch points included when a victim sought help from services and were not listened too. 2. The children’s voice – touch points included the importance of the child’s voice and why/how children should be involved in the process. 3. The Domestic Homicide Review experience – touch points included the writing of the review, the person who chairs the report, the involvement of families in the writing, the voice of the victim versus the voice of the perpetrator. 4. Support through the process – touch points included what support, if any was offered, whether it was useful and what should support look like. 5. The one thing I would change – again, touch points included the individual’s take home/priority message for professionals. When deciding what order to place the touch points inside the individual chapters, there are a few different techniques related to maximizing audience
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engagement. One option is to have polarized experiences next to each other. For example, if one person was let down by the police and the next was rescued by the police, this will build suspense for the next experience and keep the audience attention for longer. Another technique is put people side by side who have different vocal tones. For example, mixing male and female voices who talk with varying speed and pitches will hold audience attention. The most important factor when deciding the touch point order is to try to create and keep that underpinning cohesive storytelling thread all the way through. Ideally, one would begin a chapter with a touch point that contextualizes or gives an example to the importance of that chapter and then ends the chapter on a touch point that introduces the next chapter. If there is no example or option that introduces the next chapter, ending on a touch point that summarizes the importance of that previous chapter with a punchy example will help close that chapter neatly. These simple but effective techniques will help to weave that impactful storytelling thread throughout the whole Trigger Film. Creating a mapping Trigger Film with victim/survivors helped to facilitate conversations cantering on domestic violence prevention. This laid the groundwork for the emotional mapping exercise by already naming and identifying all the different services included in prevention. This meant discussion could be solution focused, and action based rather than being dominated by people wanting to share their experience as those had already been portrayed. Uniquely, the mapping Trigger Films also helped to reduce/eliminate any blame culture. Balancing both positive and negative experience of the service responses meant staff heard many examples of good practice worthy of celebrating and replicating as well as areas for improvement. There was no need for them to be innately on the defense of their service, instead this allowed them to enter discussions reflectively and with their guard lowered. Single event Trigger Films depict an event/tragedy and elicit an emotional response. Unlike the mapping films HALTs “That Day” Trigger Film was not split into chapters. It was simply the families revealing their accounts of the day they found out their loved one was killed and the impact that had on them. This was created by weaving two to three stories simultaneously in and out of one another. When one death was completed, another story began. In a typical EBCD project, this could be the single Trigger Film created and shown. This film depicts the reason everyone is participating in the project and attending the events. It demonstrates why improving services to aid prevention is critical and why, if in rare cases the killing could not be prevented, understanding and improving support for the families through the Domestic Homicide Review is also vital. When exploring this option as the only HALT EBCD Trigger Film, one of the main concerns was the potential re-traumatization for all event attendees. When deliberating what type of Trigger Film to create, some careful points to consider include what service improvement discussions are needed, how to facilitate those while keeping power balances equal and blame cultures low, and how the Trigger Film will be received. Having “That Day” as the stand-alone, Trigger Film would not have facilitated the rich solution focused, and action-based discussions the authors wanted. Instead, it had the potential to traumatize attendees and silence staff
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contributions. It could potentially have tipped the power balance into the hands of the victims/survivors and family members only and led to staff defending services rather than being open to reflection and change. Hence, the addition of the mapping Trigger Films, in this case, helped facilitate conversations and eliminate blame in the joint coproduction event and potentially helped reduce the risk of re-traumatization.
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Polishing the Films
It is somewhat of an art to combine narrative, music, and visuals to tell an engaging story. Adding transitions between footage, text, and/or music takes the audience engagement level of the Trigger Film to another dimension. This is known as polishing. Polishing changes the film from an amateur to a semi/professional production. This section will include a few simple techniques, which are by no means exhaustive, that were used in the HALT study to elevate the films. This starts with the first 10 s of the film. Adding a title slide with the name of the project and the name of the film will add professionalism to the production. Having music under that is not only engaging to the audience but also gives a practical opportunity to adjust the sound level of the PA system without missing any of the film content if there was no time for a rehearsal. Using the same title slide to bookend the film to close, and possibly adding text where to go for more information, will again, add professionalism and closure to the film. Music and blackouts were two simple tools used in HALT to help tell an engaging story and punctuate key emotional aspects within the Trigger Films. A blackout is an editing transition option inbuilt in all filming software where the visuals slowly fade from the face of the person being interviewed to into a black screen with no image. During HALTs “That Day” Trigger Film when one account of the domestic homicide was completed, the visuals would subtly fade to a black screen and the music would intentionally increase for approximately 5 s. This gave the audience a moment to reflect, pause, and pay respect to the deceased instead of jumping straight into the next murder with no pause. The intentional music increase created a cover-up moment for any emotional audience members to discreetly use a tissue to wipe their tears dignifiedly with minimal interruption. Choosing a repetitive symphony that matched the tone of the film helps set the audience on that emotional journey. Music with lyrics can deter from the interview content so be mindful when deciding on your music. Creating audio changes, delays, and pauses in the film help the audience not to become audibly fatigued. In HALT, the authors used text with a background image to introduce and name each individual chapter of the mapping films. These short audio breaks gave the audience momentary respite from continual active listening. They purposely weaved multiple people’s experiences within one chapter so the vocal and visual facial changes would keep the audience engaged longer. During moments of particular emotive storytelling the music under the film would slowly fade to silence so that only the poignant statement of the interviewee could be heard. Straight after that statement the music would suddenly come in (not fade in) to audibly punctuate the statement.
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Polishing is not only limited to the Trigger Films but to the individual case study films also. During HALT, the authors did not opt to use the case study films in any other capacity other than as a keepsake for participants. Applying the same polishing techniques above their individual interviews demonstrates to participants that their stories have been handled with upmost care, due diligence, and professionalism. Many of those participants have since gone onto to use their case study films when invited to speak at professional events about their lived experience increasing the dissemination and impact of the project.
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Validating the Trigger Films
As readers can see, during the editing process, the interview data is reduced considerably. In the HALT project, 18.5 h of interviews were condensed into 51 min of the film. Hence, the audio from the full victim/survivor interviews was sent for transcription and then analyzed using the Listening Guide (Brown and Gilligan 1993; Gilligan et al. 2003). This is a method of analyzing interviews through listening to and identifying several different aspects of the participants speech, language, and intonation. There are four main aspects to this methodology: (1) Finding the narrative; (2) IPoems (finding the “I” statements from the transcripts); (3) Contrapuntal voices (what is not being said explicitly, including pauses, intonation, and so on); and (4) Identification of wider sociopolitical and cultural discourses. As this was being conducted after the filmed interviews had taken place, there was also a unique opportunity to add body language as a fifth element, adding a further layer of understanding to the analysis. The EBCD researchers conducted their analysis separately from the Listening Guide analysts. This created an opportunity for both sets of results to be cross-checked for accuracy and validity. The themes identified complemented the chapters used in the mapping of Trigger Films and multiple quotes featured in the final Trigger Films were identified as integral to the Listening Guide analysis findings. In addition to this, an independent poet was factored into the HALT project to create a book from the Listening Guides IPoems. When developed, this, the IPoems, was almost line for line a poetry replica of the Trigger films. Neither the poet nor the film editor had any collaboration prior to this, so the IPoems became a further source of rigor and validity to the Trigger Film creation. The intimacy that both the EBCD process and the Listening Guide process elicit can be both emotionally taxing, especially for projects where participants are talking about significantly traumatic experiences, and equally empowering, as audiences are able to highlight these experiences in a way that will ultimately help others in the future. Although helping others is not a guaranteed outcome, Trigger Films have a direct impact on audiences, who often have their own emotional and reactive responses because of the issues presented. When these films have been well managed, audiences will learn from them and take action as a result of what they have seen. Therefore, it is important for the editor of the Trigger Films that they have confidence in the issues that they have chosen to
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represent. Being able to access the Listening Guide analysis alongside their own analysis ensures that the participants’ voices are well represented, and that the issues raised will have a lasting impact. The authors’ Trigger Films were shown to domestic violence service providers, the Home Office, government officials including the Domestic Violence Commissioner for England and Wales, and the Head of Public Protection (Greater Manchester Police) to cocreate and implement service improvements that will hopefully prevent future homicides nationally and, potentially, internationally.
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Conclusion and Future Directions
Simply collecting lived experience of service users in research is no longer enough. Health and social care globally should be cocreated and routinely evaluated with service users, families, staff, and stakeholders designing interventions collaboratively. Amplifying the service users’ voice and inclusion of experts by experience in research conception, development, design, and evaluation is the main agenda of governing bodies in health and social care settings globally. EBCD has been recognized as a methodology that uniquely offers an inductive and deductive approach to improving staff and service user experiences of care. The Trigger Films can depict, contrast, and compare gross inequalities of healthcare services globally. The staged approach removes power imbalances giving all parties equal say. The film production heightens anticipation and keeps the engagement of all parties high. EBCD portrays the systemic narrative from micro to macro level and offers multi-perspective insight into implementation. While EBCD offers huge potential to develop services in a service user-responsive manner, it is a lengthy methodology. Adequate time and care need to be given to the process to maximize meaningful outcomes. That being said, EBCD has been predicted to become the normative way of designing health and social care interventions and improvements globally. Now more than ever, it is imperative that researchers involve people who are experts by experience in health and social care research. Shaping a future made to support people can only happen if it is understood what is truly needed. Recent crises, and future predicted ones, highlight that those deemed “vulnerable” are going to be even more so, although it is understood that even best practices will struggle to be right for everyone. Current practices that have been created without consultation or experience are often unable to meet demand and do not create provisions for the future. Coproducing with those who have experience, or experience through others, are more likely to build long-term solutions that support the majority, with the provision that allows for further consultation and growth of the practice in the future. Impactful Trigger Films of the key issues faced by those coproducing the research as experts by experience, make the information globally accessible and easy to process. In this time of social media at the fingertips, EBCD becomes the most modern and efficient way to distribute key messages to incite positive changes in health and social care provision.
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Cross-References
▶ Coproducing Online Focus or Consultation Groups for Health and Social Care Research
References Brown LM, Gilligan C (1993) Meeting at the crossroads: women’s psychology and girl’s development. Harvard University Press, Cambridge, MA. https://journals.sagepub.com/doi/10.1177/ 0959353593031002 Craig E (2020a) HALT That Day Trigger Film. MMU Tube, 24 Apr 2020. https://mmutube.mmu. ac.uk/media/HALT_That_Day_Trigger_Film/1_vfug6roh Craig E (2020b) HALT Families Voice Trigger Film. MMU Tube, 24 Apr 2020. https://mmutube. mmu.ac.uk/media/HALT_Families_Voice_Trigger_Film/1_xzd0v2kh Gilligan C, Spencer R, Weinberg MK, Bertsch T (2003) On the listening guide: a voice-centred relational method. In: Camic PM, Rhodes JE, Yardley L (eds) Qualitative research in psychology and design. American Psychological Association, Washington, DC, pp 144–154 The Point of Care Foundation (2021) EBCD: experience-based co-design toolkit. https://www. pointofcarefoundation.org.uk/resource/experience-based-co-design-ebcd-toolkit/? gclid¼Cj0KCQjw8O-VBhCpARIsACMvVLP3nqSUEySFiFNFB5Y2HDJUMgJC5qP flyPNR8qnLvMySzFGXXu5uEIaAlkGEALw_wcB
Researching Female Sexual Dysfunction in Sensitive Populations: Issues and Challenges in the Methodologies Rosediani Muhamad, Pranee Liamputtong, and Dell Horey
Contents 1 2 3 4
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . How FSD Is Defined Medically? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Culturally Sensitivities and Women with FSD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Meta-synthesis of Qualitative Studies Seeking to Understand the Experience of FSD . . . 4.1 Included Studies Populations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Study Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Theoretical, Methodological, and Analytical Frameworks . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Choice of Frameworks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5 Methodological Frameworks: Phenomenology vs Grounded Theory . . . . . . . . . . . . . . . 4.6 Rigor and Reflexivity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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Abstract
Researching intimate issues like female sexual dysfunction (FSD) is challenging and can be especially so in Asian and Muslim populations, where such matters are strictly socially taboo despite its high prevalence. Research into “sensitive” issues has potential consequences, not only for research participants but also for R. Muhamad (*) Family Medicine Department, School of Medical Sciences, Universiti Sains Malaysia, Kubang Kerian, Malaysia e-mail: [email protected] P. Liamputtong College of Health Sciences, VinUniversity, Hanoi, Vietnam e-mail: [email protected] D. Horey Faculty Science, Business, Agriculture and Law, University of New England, Armidale, NSW, Australia Department of Public Health, La Trobe University, Bundoora, VIC, Australia e-mail: [email protected] © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_107
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researchers, and hence needs careful consideration. This chapter discusses the different ways that researchers have approached the study of FSD and to identify potential strengths, weaknesses, and gaps that may affect study quality. These issues raise methodological challenges for the social sciences. Theoretical and methodological frameworks can affect the conduct of studies and their discussion. These, as well as the approach to the analysis, need to be reported and described appropriately, as these have implications for the study rigor. Consideration of these issues is clearly important when planning FSD research. A critical discussion of these issues in this chapter outlines an appropriate FSD definition to follow, different theories and their application, effective methods that are useful in helping to understand the phenomenon, and the importance of incorporating innovative methods. Keywords
Methodology · Sexual dysfunction · Taboo · Theories · Asian women · Muslim country
1
Introduction
All women are at risk of sexual dysfunction, and among the different types of sexual issues experienced by women, disturbance in sexual desire is the most common. High estimates of the prevalence of female sexual dysfunction (FSD), approximately half of all reproductive women (50.75%, 95% CI 41.73–59.78), were recently highlighted in meta-analysis (Alidost et al. 2021). However, efforts to determine prevalence estimates rely on understanding – and managing – differences in how FSD research is conducted. The experience of FSD can prevent women from achieving satisfaction during sexual intercourse. Dissatisfaction may cause difficulties with arousal, to achieve orgasm, or even to enjoy sex without pain. Understanding the context of a FSD study is important to enabling healthcare providers to provide comprehensive care. Only a small percentage of women who experience FSD, particularly those who feel taboo about sex, seek medical attention for the condition, often due to embarrassment or the stigma surrounding sexual health issues (Muhamad et al. 2016). Yet, FSD can have a significant impact on a woman’s quality of life, her relationships, and her overall well-being. Social science scholars have stressed the need to recognize balance when managing sexual problems between medical and non-medical (psychological-personalinterpersonal) frameworks. Tiefer (2012) developed the “New View” on women’s sexual problems to help understand FSD better, contending that the focus of such problems should be women’s own views; that is, any model should be meaningcentered, rather than focusing on sexual responses per se, which is functionalcentered. The multifactorial nature of the disorder (Weinberger et al. 2019) is better understood with research exploring how women understand the causes of their
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condition, the consequences of their sexual problems, and the types of strategies they employ to manage them. In turn, current FSD clinical classifications have aimed to capture such meaning-centered frameworks by including distress criteria and other factors affecting FSD. This chapter will describe how social science researchers have conducted studies of FSD involving women with high sensitivities to sexual stigma. FSD is considered taboo to talk about, even within relationships. This raises challenges for researchers, so it is important to ensure such studies are conducted well, to get the most from them. This chapter will also focus on the potential strengths, weaknesses, and gaps in the methodology that may affect study quality.
2
How FSD Is Defined Medically?
Female sexual dysfunction (FSD) can be self-defined or clinically defined in research studies. Clinical categorizations of sexual disorders in women are based on the cycle of sexual response (APA 2013) and where in that cycle particular problems occur. There is considerable potential for overlap and concurrence between different clinical categories. Clinically, FSD is defined as disorders of sexual desire, arousal, orgasm, and sexual pain and is classified under both Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Statistical Classification of Diseases and Related Health Problems (ICD). The spectrum of female sexual dysfunction (FSD) captured by the DSM-5 and ICD-11 classifications have slight differences, as shown in Table 1:
Table 1 Classification of FSD according to DSM-5 and ICD-11 Category Classification/ category
Other criteria (a) Duration (b) Onset (c) Context (d) Etiology (e) Severity (f) Associated factors a
DSM-5 1. Female sexual interest/ arousal disorder 2. Female orgasmic disorder 3. Genito-pelvic pain/ penetrative disorder (include dyspareunia and vulvodynia if it related to sexual intercourse)
ICD-11 1. Hypoactive sexual desire dysfunction 2. Female sexual arousal dysfunction 3. Orgasmic dysfunction 4. Sexual pain-penetration disorder (exclude vulvodynia and dyspareunia)a
1. 6 months or longer 2. Lifelong or acquired 3. Generalized vs. situational 4. Spouse, relationship, individual, cultural/religious, and medical 5. Mild, moderate, severe 6. Social or medical
1. At least several months 2. Persistent vs. episodic
It is classified under different disorder
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Both clinical classifications agree that FSD must be associated with significant distress and highlight triggering factors that influence the ways that women respond to sexual stimuli. Responses occur according to dynamic and complex interactions between personal-interpersonal-environment processes such as physiological, psychological, social, cultural, and gender roles (Basson 2000; Muhamad et al. 2016). These revised clinical classifications of FSD provide some advantages to social science and other researchers. First, they offer a well-defined source population, which enables researchers to differentiate between those women who are at risk, those who already have a diagnosis, and those who may be within the spectrum of the disorders. Second, clear definitions can guide researchers to develop relevant inclusion and exclusion criteria and to discuss factors related to biological, psychological, or social factors in-depth. Third, in countries where sexual problems for women are largely invisible, formal medical classification can raise awareness among medical practitioners that women’s distress about sexual problems is real, warrants attention, and that more research needs to be conducted.
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Culturally Sensitivities and Women with FSD
The prevalence of FSD has been found to be particularly high among particular groups of women, including women in Muslim countries such as Iran (86.6%) (Moghassemi et al. 2011) and Egypt (76.9%) (Hassanin et al. 2010), and women across the Asian regions, including India (64.3%) in South Asia (Viswanathan et al. 2014), Hong Kong and China (59%) in East Asia (Lo and Kok 2014), and Malaysia (58%) in Southeast Asia (Nicolosi et al. 2005). Women in these studies live in sexually conservative societies defined by patriarchal cultural values where they are expected to maintain their roles as a “good mother” and “good wife,” and where the subject of sex is taboo. Understanding how women in these cultures view the meanings of their sexual experiences is likely to be more complex, as the existing social and religious taboos make it more difficult for women to talk about their sexual dysfunction. Research involving women in these circumstances is likely to be more complex and involve additional sensitivity in the study design, how participants are managed, and how results are interpreted and reported.
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Meta-synthesis of Qualitative Studies Seeking to Understand the Experience of FSD
In conducting sensitive research like FSD, it is essential to select a more flexible research approach that would allow women to be able to articulate their lived experiences. This is when the qualitative approach becomes essential (Liamputtong 2007, 2020). This chapter will focus mainly on qualitative methodologies in the sections below.
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To describe the social science approaches used by researchers to understand FSD, studies included in a meta-synthesis of the qualitative literature seeking to understand the experiences of FSD (Muhamad et al. 2016) were examined. These qualitative studies included women living with social taboo around sexual issues. Three key issues were explored: the conceptual or theoretical framework used; the study method components reported, and how extensively the analysis has been conducted. The meta-synthesis included studies published between 2005 and 2021 and was conducted using the Sandelowski and Barroso framework (Muhamad et al. 2016). The searching and retrieving activities were conducted using processes similar to those in a systematic review. The search terms were “female sexual dysfunction,” “sexual problem,” and “sexual intercourse,” while other MESH words such as “sexuality” and “sexual disorders” (sexual desire, sexual arousal, sexual pain, sexual orgasm) were also utilized to expand the search possibilities. The comprehensive search involved six electronic databases: CINAHL, SCIENCE DIRECT, MEDLINE, PUBMED, and Google Scholar; three key journals: Journal of Sexual Medicine, Journal of Sexual Research, and Archive of Sexual Behavior; and manual searches of reference list of the included journal articles.
4.1
Included Studies Populations
The systematic search identified 10 qualitative studies (see Table 2) involving a total of 223 heterosexual women from diverse ethnicities living with significant social or religious taboo regarding discussion of sexual dysfunction. The studies were conducted in seven countries: Australia [3 studies], Hong Kong [2], Iran, Israel, Korea, Lebanon, and Malaysia [1 each]. Three studies specifically identified Muslim women in their study participants (Meldrum et al. 2014; Khoei et al. 2008; Muhamad et al. 2016, 2021). All papers were judged to be either “moderate” or “strong” in terms of their quality score.
4.2
Study Methods
The 10 studies included six studies related to meanings of sexuality (Azar et al. 2016, 2021; Khoei et al. 2008; Meldrum et al. 2014; Yan et al. 2011; Ying Ho 2008; Yun et al. 2014), one study exploring meanings of sexuality and FSD (Muhamad 2016; Muhamad et al. 2016, 2019, 2021), and three studies focused on specific sexual dysfunction types (Akbari et al. 2018; Ayling and Ussher 2008; Lavie and Willig 2005). These latter studies included: female sexual interest/arousal disorder (Akbari et al. 2018); inorgasmia (Lavie and Willig 2005); and vulvodynia (Ayling and Ussher 2008). The researchers used a mix of recruitment approaches with purposive sampling through advertisement being the most common method used. However, it appears that using advertisements alone was less successful for recruiting women with FSD (6–26 participants) compared with those studies with broader inclusion criteria
Purposive Flyer Adv Purposive Adv/snowball/ Referral Purposive/ Snowball
Phenomenology
Ethnography
Purposive Referral
Phenomenology and Critical Theory
Not specified
✓
Purposive
Purposive
Purposive advertisement (Adv)
Interpretative phenomenology Grounded theory
Sampling method strategies
Study sample
Methodological framework
Phenomenology
✓
Other
✓
✓
FGD
Feminist theory and symbolic interactionism theory Meldrum et al. (2014) ✓ [Australia] Sexual script theory and social construct theory Muhamad (2016) ✓ and Muhamad et al. (2019, 2021) [Malaysia] Framework of Islamic marriage Khoei et al. (2008) ✓ ✓ Field [Australia] work
Yan et al. (2011) [Hong Kong] Yun et al. (2014) [Korea] Akbari et al. (2018) [Iran]
First author and year [Country] IDI Theoretical framework not specified Lavie and Willig (2005) ✓ [Israel]
Study design Data collection
51 (19–82)
26 All disorders
11 (18–25)
6 (20–26) Inorgasmia 13 (61–85) 10 (65–75) 17 (mean 34) FSIAD
Number (Age range) FSD type
Table 2 Frameworks and methods used in qualitative studies among researchers relating to meanings of sexuality and FSD
Not described
Thematic analysis
Thematic analysisb
Thematic analysis
Thematic analysisa
Grounded theory
Interpretive analysis
Data analysis (or analytical framework)
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✓
a
HS heterosexual, IDI in-depth interview, FG focus group van Manen b Braun and Clarke
Material – discursive and critical realist epistemology Ayling and Ussher (2008) ✓ ✓ [Australia]
Interpretive constructivism Ying Ho (2008) ✓ [Hong Kong] Naturalistic and holistic paradigm Azar et al. (2016, 2021) ✓ [Lebanon]
–
Grounded theory
Not mentioned
Purposive Emails and letters
Purposive Snowball, key person
Purposive
6 (18–41; 27) Vulvodynia
42
41 (35–55)
Foucauldian poststructuralist framework
Framework analysis
Not mentioned
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(10–51 participants), probably due to the sensitive nature of the phenomena. Lavie and Willig (2005) commented that they were able to recruit only six participants with inorgasmia through advertisements in several universities alone, while Muhamad et al. (2016) had to use multiple recruitment strategies over 8 months to find enough suitable participants with FSD. These recruitment strategies included advertisements through hospitals and on social media, snowballing through study participants, word-of-mouth through local networks, and through referral from medical specialists. All studies used in-depth interviews to collect data, and this can be especially valuable for data collection involving those who are disempowered by their illness (Creswell and Poth 2016; Liamputtong 2020). Four studies (Azar et al. 2016; Khoei et al. 2008; Yan et al. 2011; Ying Ho 2008) supported in-depth interviews with focus group discussions, but none explained the reason for this, or what additional benefits were achieved. Muhamad et al. (2019) employed photo-elicitation to enhance data gathering in in-depth interviews. Adding this innovative method was shown to be useful in encouraging those who felt particularly vulnerable to disclosing intimate information. It was particularly valuable when women did not have the language to convey their experiences. By choosing images to convey their feelings and FSD experiences, the women could explain the reasons for their selection, and in doing so provide rich data and reveal complex issues. Exploring participant perspectives using photo-elicitation also increases rigor, as socio-cultural effects are uncovered more effectively, participant cooperation is encouraged, and sensitive, lived experiences of health and illness are highlighted.
4.3
Theoretical, Methodological, and Analytical Frameworks
Overall, the frameworks used in the studies were not explicitly described and in some cases were absent or unclear. However, three different types of frameworks could be identified in studies. How these frameworks are used and described appears to be critical to identifying potential strengths, weaknesses, and gaps. Theoretical frameworks were used to explain sexual dysfunction. Methodological frameworks provided an organized and flexible way to approach the research problem. Methodological frameworks guide researchers through any conceptual or process issues that need to be addressed (Novikov and Novikov 2013; Liamputtong 2020). Analytical frameworks are used to guide data analysis (see Table 3). Not all studies presented a clear theoretical framework, while some studies used different combinations of theories to explain sexual dysfunction. These included social constructionism, cognitive theories, symbolic interactionism, and materialdiscursive, feminist, and sexual script theories (see Table 3). Table 2 describes theories of sexuality and sexual behavior and shows how they have been applied to the experience of FSD.
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Table 3 Theories of sexuality and sexual behavior Theory Symbolic Interactionism Theory (SIT)
MaterialDiscursive Theory (MDT)
Social Cognitive Theory (SCT)
Description Refers to patterns of how an individual communicates, interprets, and adjusts their meanings (Blumer 1969) Highlights responses to environmental factors according to the subjective meanings (symbols) attached to those elements. Highly recognized theory in understanding meanings of sexuality and promoting positive support systems Meanings are generated throughout lifetime and follow social interactions with surroundings. People either adopt or modify meanings by assimilating communication (symbolic) with others Widely used theory to construct meanings in human interactions through subject-object relations Bilmes (1986) explained that crucial aspect of the discourse is when “behavior is viewed as meaningful by virtue of its articulation with a system of discourse rather than by virtue of its being ‘meant’ or motivated.” Any discourse must be materialized in some form in order to exist, for example: socio-cultural religious understanding and literacy Materiality is a dynamic process where actors practice what they mean Material and discursive responses cannot be separated because they involve interaction with others, with objects, and in surroundings Widely used in the field of sexual health Introduced by Albert Bandura in 1986 as an extension of his earlier work on sexual learning theory, who postulated that individuals learn behaviors through interactions in social environments, particularly the home and school while under external influences such as popular media Insight based on modeling process that included attentive observation of
Application Other than its application to studies conducted in western countries, this theory has been used to understand the meaning-making of their sexuality for young Muslim women living in two different environments community in Australia, an Islamicsocio-cultural setting and a non-Muslim (Meldrum et al. 2004)
Used by many researchers in sexuality studies, especially those in Western countries, but has yet to be applied in studies conducted in Asian countries Ayling and Ussher (2008) explained how women acknowledged the meanings of living with vulvodynia using interaction between the experience of materiality with physical and psychological symptoms and the constructed discursive experience of sexuality and femininity
Theory offers a dynamic way to interpret behavior beyond personal expression Effects of evolutionary factors on human adaptation and change are acknowledged and not seen as solely biological Broader understanding of interactions of the many factors that lead individuals to experience sexual dysfunction and adapt to problems in different ways (continued)
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Table 3 (continued) Theory
Sexual Script Theory (SST)
Feminist theory
Description other’s experiences. Such observations are cognitively organized for future reference to inform future actions Three factors determine the adoption of imitative behavior: internal factors, or self-assessments of behaviors; external factors, or awareness of others’ assessments of behaviors; and vicarious factors, or assessments of others’ behaviors and subsequently adopted as their own Based on assumption that “sexuality becomes a vehicle for expressing the needs of social roles,” and not the other way round (Simon and Gagnon 1973, p. 45) Simon and Gagnon (2003) also claimed that language and symbols (or communication) play important roles in the construction of sexuality Simon and Gagnon (2003) believed a more powerful urge – socio-cultural context – shapes human behavioral scripts Principles and concepts pertaining to extensive social and political campaigns aimed at attaining parity for women Beneficial to draw attention to any gender inequality adversely affecting women’s lives Hesse-Biber (2014, p. 6) argues, that “recognising women’s life stories is a valuable form of knowledge,” even though the approach is acknowledged as “plurality” or relevant beyond women’s experiences Feminist methodologies allow women to voice what they feel and need, including needs in sexual and marital relationships, which are often unvoiced
Application
Theory describes both phenomenon and meanings attached to an experience Useful theory to explore and interpret conforming behaviors such as those displayed by Malay women with FSD (Muhamad, 2016; Muhamad et al. 2019, 2021)
Helps to improve the lives of women Researchers strongly believe that drawing attention to any gender inequality that adversely affects women’s lives is beneficial Assists researcher to interpret their findings in ways that could empower women to solve their sexual problems and their consequences
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The different methodological approaches used to explore the lived experiences of women with FSD reported. Table 2 shows that phenomenology was used most commonly (four studies), including, in one study, as interpretative phenomenology (Lavie and Willig 2005) and in another, in conjunction with critical theory (Meldrum et al. 2014). Two studies reported using grounded theory in their study approach, while one study took an ethnographic approach. The methodological framework guiding the remaining three studies was unclear. Lack of information about the methodological approach may influence the trustworthiness of the study. In terms of analytical frameworks used for data analysis, the most commonly reported approach was thematic analysis (four studies). Two studies claimed to follow specific guidance from either van Manen (Yun et al. 2014) or Braun and Clarke (Meldrum et al. 2014). Other approaches to data analysis included framework analysis, interpretive analysis, Foucauldian post-structuralist framework analysis (Ayling and Ussher 2008), and grounded theory (Yan et al. 2011). Two studies did not describe their analytical approach (Khoei et al. 2008; Ying Ho 2008).
4.4
Choice of Frameworks
Examination of the frameworks used in the 10 qualitative studies show that the choice of the theoretical and methodological frameworks needs careful consideration. This type of framework can provide guidance for researchers to choose appropriate methodologies and methods across all stages of the research process (Johnson et al. 2020). The use of theoretical frameworks also needs to be conducted with caution, so as to avoid violating the inductive principle of qualitative design (Johnson et al. 2020). However, even where the intent is to develop a new theory, there should be evidence that researchers are aware of existing theories and their limitations. Ayling and Ussher (2008) provide a success example of justifying the use of material discursive theory. This was the theoretical framework used to develop their research questions, their approach to data collection and analysis, and in the interpretation of their results, including their reflexivity and discussion. Their process was carefully described to ensure rigor. Five key theoretical frameworks that can be applied to the study of FSD are presented in Table 3.
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Methodological Frameworks: Phenomenology vs Grounded Theory
The two most common methodological approaches used in studies of personal experiences of women with sexual dysfunction included in the review were phenomenology and grounded theory. Phenomenology captures the “what,” “why,” and “how,” of any phenomena by offering a way to describe the lived experiences and the meanings attached to them (Creswell and Poth 2016; Liamputtong 2020). In studying sexual difficulties, phenomenology enables the meanings of sexuality and sexual dysfunction to be detailed from the perspective of people living with this “phenomena.” Through the application of interpretative (hermeneutic) phenomenology, reflection is added, which permits findings to be interpreted without bracketing prior assumptions, knowledge, or experience (Creswell and Poth 2016). This flexibility gives researchers and research participants the ability to share meanings of “being” in sexual dysfunction. Grounded theory is commonly used when researchers want to identify relationship patterns or possible causal relationships between social actors and to find out “how” these relationships interact to construct women’s reality (Liamputtong 2020). Grounded theory seeks to move beyond a description of a phenomenon with the intention of creating new theories or concepts (Creswell and Poth 2016). Almost all studies, using phenomenology to guide sampling methods, collect data through face-to-face in-depth interviews. Phenomenology necessarily involves purposive sampling, whereas grounded theory uses theoretical sampling, which involves researchers to systematically work on their data collection, by coding and analyzing simultaneously from the start to find the theoretical ideas or concepts that are generated. Researchers choose further participants according to the theoretical ideas and concepts that arise until theoretical saturation is achieved (Creswell and Poth 2016). This is unlike purposive sampling, which allows researchers to choose study participants based on their own judgments (Creswell and Poth 2016; Liamputtong 2020). Purposive sampling technique provides greater flexibility, takes less time, and can be planned earlier than theoretical sampling. Such flexibility is an important consideration when researching sensitive issues and vulnerable populations (Liamputtong 2020). In terms of data collection, there is no clear distinction between how this is done for phenomenology and grounded theory as both require rich data to be captured. Multiple in-depth interviews are a widely used method for data collection in both phenomenological studies and those guided by grounded theory. Data are usually gathered face-to-face, with innovative methods incorporated to facilitate data collection when sensitive issues are being studied (Creswell and Poth 2016; Liamputtong 2020). Methodology has a direct influence on the analytic frameworks used for analysis. The methodology of phenomenology gives freedom to comprehensively analyze and interpret participants’ experiences according to participants’ meanings, particularly those involving language and sociocultural influences, using thematic analysis. This technique for identifying and reporting themes emerging within data enables deeper
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insight and broader understanding of the phenomenon under study (Braun Clarke 2006; Liamputtong 2020). Similarly, thematic analysis is suitable grounded theory studies. Connections between theoretical, methodological, analytical frameworks can provide triangulation in terms of a study’s aims how these are achieved (Liamputtong 2020).
and for and and
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Rigor and Reflexivity
Apart from clear rationale for sampling design and methodological decisions, rigor and reflexivity are also critical components of quality in qualitative studies (Liamputtong 2020). Appropriate sampling process, determination of data saturation, and effective data collection also play an important role in increasing the quality and trustworthiness of the research. Rigor establishes the trustworthiness and credibility of a study (Lincoln and Guba 1985), enabling readers to trust their understanding of the experiences shared by study participants. There are several aspects to achieving study rigor that have particular relevance to qualitative studies of FSD: Prolonged engagement is one technique used to establish credibility in these studies (Liamputtong 2020). Most interviews in the studies averaged 1 h, which was needed to gain familiarity and to understand the culture and context of the women or situations. Five studies supplemented interviews with focus groups, while two studies, with average periods of engagement twice that of other studies, employed multiple interviews with participants (Muhamad et al. 2016; Yun et al. 2014). Peer debriefing and member checking – Reviewing each transcript, reading line by line and rereading multiple times, looking for similarities and the differences within and across all participants’ data are common practices in social science research to ensure credibility (Liamputtong 2020). While most studies included in the review claimed that peer briefing and member checking were conducted, only a few explained how this was done. Three studies did not describe how this was done. These processes have particular importance when studies involve vulnerable populations, as they can provide reassurance to participants during the study, and for similar women reading about the study afterward that the women have been heard. Yun et al. (2014) described the analysis process step-by-step based on van Manen’s model and also explained how member checking was carried out. Muhamad (2016) described the meticulous discussions that occurred between expert members in the research team throughout the steps of analysis, including how the final themes were developed and how transcripts and results were made available to participants for review. Triangulation is a very useful strategy to minimize error and bias and to improve accuracy in data collection and analysis (Liamputtong 2020). As a practice standard in qualitative research, its implementation can improve study credibility. Triangulation helps to merge and confirm data obtained through different methods and data sources. For example, Muhamad et al. (2019) used transcripts with multiple in-depth interviews, photo-elicitation, and field notes to ensure that participants’ experiences
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were captured. These efforts have value when phenomena are not well understood, as they provide safeguards against the assumptions researchers may make. Triangulation can also align theory, method, and analysis, and so ensure that studies are designed to fulfill their intended goals. Dependability through external audit is another important element of qualitative research, which increases trustworthiness, so other researchers can follow every step and, ultimately, the decision trail of the researcher (Liamputtong 2020). Dependability can be achieved by clearly describing important aspects of the study, including its main purpose, the methods used, and the journey of the data collection. Details, such as how many people were involved in the analysis, should be included. Of the studies included in the review, only three explained their inquiry audit with their team members who included experts in the field (Akbari et al. 2018; Muhamad et al. 2019; Yun et al. 2014). No studies included in the review reported the involvement of outsider experts. Demonstrated transferability using thick descriptions can overcome the problems that the results of qualitative studies cannot be generalized to other populations (Liamputtong 2020). In the studies included in the review, most of the qualitative researchers described their study populations with thick descriptions that included participant demographics, type of disorders experienced, medical characteristics, and geographic boundaries. Among examples highlighted in the primary papers to establish transferability are by suggesting in the strength of their studies to use similar data collection methods for different socio-demographic groups (Azar et al. 2021). And for some other studies, they came out with the suggestion of how the research findings can contribute to the practice (Azar et al. 2021; Muhamad et al. 2019, 2021). Reflexivity is critical in qualitative studies of FSD, particularly when women are in sensitive environments. Reflexivity involves self-reflection by researchers either in the position of emic (outsider) or etic (insider) (Liamputtong 2020). Both perceptions can hold unacknowledged assumptions and influence data interpretation. Researchers need to consider their relationship with the study topic and participants to be able to bracket, or put aside, any prior assumptions, knowledge, or experience to allow the findings from the study to be interpreted. Reflexivity is supported by deliberate research planning, by working systematically with data and documenting the research process through the use of field notes while conducting the analysis. Strategies to support reflexivity also support confirmability, which occurs when researchers use self-critical attitudes to reflect on their research processes. Writing field notes before and immediately after conducting interviews is a common technique used by qualitative researchers so personal feelings, biases, and insights are recorded. It also encourages documentation of any clarifications needed during an interview. Using reflective methods are essential to gain the trust of readers, and participants, with research findings and their applicability to practice. Four studies included in the review gave good accounts of how this was achieved (Ayling and Ussher 2008; Azar et al. 2021; Muhamad 2016; Muhamad et al. 2021; Yun et al. 2014).
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Conclusion and Future Direction
Researching sensitive issues such as sexuality and FSD requires high-quality studies, particularly when women with high sensitivities to sexual stigma are involved. This means that FSD studies need to be based on suitable theories, or at least, show evidence of understanding of existing theories. Research methodologies need to be appropriate to the theoretical framework that is employed, with strategies that take account of the needs and vulnerabilities of the women involved in the study. Importantly, these types of studies need to be undertaken by trained researchers. After all, researchers comprise the main research tool in qualitative studies. Their skills in research design, data collection and analysis, and the interpretation of findings are critical. The roles of researchers have particular importance in the study of sensitive topics, such as FSD, undertaken in sensitive population groups. These roles include identifying an important research gap, choosing an appropriate theory that aligns with their research questions, and the methodological framework and analysis that supports it. Quality research outputs are built on studies that successfully capture the lived experiences of participants and validate their voices as an important source of knowledge. This is how understanding can be built and stigma can be reduced. Reflexivity has a very important place in the conduct of high-quality qualitative social science research, not only because it minimizes biases, but because it also raises awareness of unacknowledged assumptions and their influences on data interpretation. Reflexivity encourages honest accounts of studies so that all steps, interactions, and limitations are duly addressed. Future qualitative studies on FSD, particularly those involving women with increased sensitivities to stigma, should employ strategies to increase rigor in all research processes, including embedding processes to ensure reflexivity. In addition: • Researchers need to be trained in qualitative research techniques and, where possible, involve experts to review preliminary findings. • Reference to current sexual behavior theory – or theories – should inform study design, conduct, and interpretation. • Phenomenology is commonly used as compared to grounded theory in researching this sensitive topic. • All three types of frameworks – theoretical, methodological, and analytical – should be reported with detailed descriptions of the processes used. • The use of innovative methods in data collection, such as photo elicitation, to engage participants and encourage their voices to be heard.
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Consensus Methods for Health Research in a Global Setting Simon A. Carter, Allison Tong, Jonathan C. Craig, Armando Teixeira-Pinto, and Karine E. Manera
Contents 1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Overview of Consensus Methods in Health Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Nominal Group Technique . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 When to Use Nominal Group Technique . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Participant Selection, Recruitment, and Group Number . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 The Facilitator and Setting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 How to Conduct the Nominal Group Technique . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5 Data Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6 Methodological Variations and Practical Aspects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 The Delphi Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Purpose and Aims of the Delphi Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Panel Composition and Recruitment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3 Data Collection and Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5 Challenges and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Stakeholder and Consensus Workshops . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1 Role and Aim . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Participants and Contributors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Workshop Program and Process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 Cross-Cultural and Multinational Consensus Methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Conclusion and Future Direction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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S. A. Carter (*) · A. Tong · A. Teixeira-Pinto · K. E. Manera Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia e-mail: [email protected] J. C. Craig College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia © Springer Nature Switzerland AG 2023 P. Liamputtong (ed.), Handbook of Social Sciences and Global Public Health, https://doi.org/10.1007/978-3-031-25110-8_65
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Abstract
Understanding and addressing the priorities of relevant stakeholders is needed in healthcare decision-making, particularly when there is uncertainty due to insufficient evidence, healthcare resources are limited, or to optimize the delivery and assessment of interventions. Consensus methods have diverse applications that include prioritizing research questions that meet the needs of all stakeholders, outcomes for trials, clinical practice guidelines, topics for medical education, and the allocation of scarce resources. Formal consensus methods generate agreement among stakeholders in a transparent, inclusive, and rigorous way. In general, this is achieved by identifying, exploring, and clarifying the set of issues or opinions followed by a process to reconcile opinions (i.e., consensus development). Common features of consensus methods include the provision of standardized materials, moderated interactions, private polling, and iterative feedback from the group. This chapter reviews the three most commonly used formal consensus methods: the nominal group technique, the Delphi method, and stakeholder workshops, and discusses their use in healthcare research in a global setting. Keywords
Consensus methods · Public health · Nominal group technique · Global setting · Delphi method · Consensus workshop
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Introduction
Differences in priorities among stakeholders (for example, between health professionals and patients) mean that research, healthcare, and policy may not address the needs of all parties, particularly patients. A patient’s experience of their disease may mean they have different informational needs from health professionals when weighing treatment options, or different priorities around the optimal allocation of scarce resources for research. For example, research in patients requiring dialysis that largely reports biochemical markers and not patient-reported outcomes (e.g., fatigue) will not meet patients’ priorities, thus contributing to research waste (Tong et al. 2017b). Uncertainty due to lacking or contradictory evidence may lead to different treatment pathways for a health condition causing confusion and confounding attempts at research. In these situations, consensus research methods such as the nominal group technique, Delphi method, or consensus workshops can be used to identify areas of agreement or common priorities, and aim to reconcile any differences of opinion. For example, Corner et al. (2007) used the nominal group technique to show a disconnect between the research priorities of patients receiving cancer treatment and existing research programs. Consensus workshops among patients, care partners, and health professionals were used to identify critically important outcomes for all stakeholder groups in trials in kidney transplantation (Tong et al. 2017a). Bishop et al. (2016) used a multinational Delphi survey to
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Table 1 Defining features of commonly used formal consensus methods
Provision of background information/discussion prompts Structured interaction Skilled objective moderators All opinions explicitly sought, i.e., polling Opinions given anonymously Controlled feedback Iterative feedback A priori definition of consensus Supports implementation
Nominal group technique Yes
Delphi method Optional
Stakeholder workshops Yes
Combined methods Yes
Yes Yes Yes
Yes NA Yes
No Yes Optional
Yes Yes Yes
Yes Yes Optional No Optional
Yes Yes Yes Ideally Optional
No Optional No No Yes
Yes Yes Yes Ideally Yes
NA not applicable
develop a set of consensus statements among different professional groups on the identification and evaluation of language impairments in children. Consensus research methods systematically explore a topic, organize participants’ input, synthesize the various opinions, and ultimately seek agreement. They achieve this by using methods that reduce distorting factors while ensuring the transparency and equity of the consensus process (see Table 1) (Humphrey-Murto et al. 2017; Jones and Hunter 1995). For example, anonymity of opinion and the structured or semi-structured interaction of participants can ensure input from all stakeholders, avoid conformity, and reduce the influence of dominant individuals. Iterative, controlled feedback from the group can increase the understanding of diverse perspectives among all stakeholders, achieve clarify on similarities and differences, and provide opportunities for reconciliation of opinion. Consensus research methods share a common set of assumptions that underpin their trustworthiness and utility (Murphy et al. 1998). They assume that (a) exchanging and defending views with others lead to better justified decisions, (b) the involvement of many people increases the chances of reaching a better decision, and (c) they are scientifically valid and adequately mitigate any negative social and cognitive effects. They also assume the group carries more authority than an individual during implementation. Since the development of the Delphi method by the RAND Corporation over 70 years ago, formal consensus methods have been adapted and applied extensively in healthcare (Fink et al. 1991). They have been used in fields such as hospital and community healthcare, medicine, nursing, surgery, research methods, medical education, administration and policy. Their diverse applications have included developing agreement on clinical classifications (Banks et al. 2013), diagnostic or treatment algorithms and procedures (Strauss et al. 1995; Miskovic et al. 2015), psychometrics (Lomas et al. 1987), nomenclature (Levey et al. 2020), clinical practice guidelines (Murphy et al. 1998), educational and research prioritization (Bayley et al. 1994),
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healthcare rationing (Robert et al. 2014), and forecasting (i.e., increase the accuracy of predictions) (Shekelle and Goldman 2018). However, the evidence for some methodological aspects of commonly used consensus methods remains unclear and these methods continue to be refined. The nominal group technique, Delphi method, and consensus workshop are the three formal consensus methods most commonly used in healthcare research and may be used in combination to achieve a more trustworthy agreement (Murphy et al. 1998; Waggoner et al. 2016). With increasing global internet access and the availability of videoconferencing, these methods have been adapted to the online environment to reach large numbers of people from diverse backgrounds. This poses new challenges such as recruitment and valid usage among culturally and linguistically diverse populations (Epstein et al. 2015; King et al. 2011; Varma et al. 2021). This chapter will provide an overview of nominal group technique, the Delphi method, and consensus workshops; their use on a global scale; discuss perspectives and challenges around their applications, and lastly consider future directions.
2
Overview of Consensus Methods in Health Research
The overarching aim of these methods is consensus development – that is, to establish a valid and useful consensus among the majority of or all stakeholders on a set of statements, recommendations, or concepts. A secondary aim may be to describe the degree of agreement or disagreement (i.e., consensus measurement), by determining the common or central position and describing the variation in opinion qualitatively or semiquantitatively (Jones and Hunter 1995). Similarly, the definition of agreement may also stipulate that no stakeholder strongly disagrees or vetoes what is proposed. These aims may be either implicit (e.g., no one voicing objection) or explicit, ideally using prespecified definitions of consensus (e.g., 75% stakeholder support). Consensus findings should be action-oriented and have a high utility by being in a form that can properly inform healthcare decisions. Thus, implementation is another aim that is implicit (and often explicit) in all consensus work (Fink et al. 1991). Researchers must first adequately specify the scope of the consensus work, its intended application, and identify all relevant stakeholders (Murphy et al. 1998). These steps are often performed alongside one another and address the following questions: Who has relevant expertise or experience? When does the problem occur or agreement is needed? Which populations are the end users, involved with, or affected by the issues at stake? What is the intended usage, and is the consensus intended to apply nationally, internationally, or globally? As a group, participants should share key characteristics with the stakeholders and the population(s) the consensus data generated are to be applied to. This usually also means including participants with different ages, genders and ethnicities. However, depending on the research question may also mean input from one or more professional groups, diverse roles (e.g., patients and care partners), and different practice or resource settings. Input from all stakeholder groups is necessary to increase the impact of the
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consensus. However, the involvement of policy groups, funding agencies, and political bodies may be particularly important for implementation. Though these methods share several features, each focuses on different parts of the consensus problem. For example, the nominal group technique harnesses group dynamics suited to certain types of problem exploration. It may help achieve clarification of ideas or concepts among stakeholders prior to prioritization (Van de Ven and Delbecq 1972). Both the nominal group technique and consensus workshops are conducted face-to-face using skilled, impartial moderators. Openly engaging stakeholders in this way may increase the uptake and impact of the consensus reached. Unlike other methods, the Delphi method polls participants remotely and asynchronously via a survey, thus reducing time and social pressures (Jones and Hunter 1995). It uses iterative rounds containing controlled feedback to allow for convergence of participants’ opinions. The researchers analyze data from each round and may undertake any clarification of concepts required.
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Nominal Group Technique
First adapted to healthcare in the 1970s, the nominal group technique (NGT) is a combined brainstorming and prioritization exercise usually embedded as part of a focus group (Van de Ven and Delbecq 1972). Participants are prompted during a preliminary discussion to explore a problem then contribute ideas with the aim of identifying a working set of concepts. These concepts are clarified until agreement is reached and then compiled into a working list. Participants then individually prioritize either all or some of the concepts (or “items”) on the list. For example, Irving et al. (2014) conducted 13 nominal groups to identify and prioritize factors that influenced members of the public to register as an organ donor. Following discussion, each participant first suggested their top five factors then later individually ranked all identified factors. A score between 0 and 10 was assigned to each factor, and different descriptive statistics were used to summarize the findings. Once scoring is completed, priorities may be discussed to better understand the top priorities and reasons behind these choices. Key strengths of the nominal group technique include harnessing the group dynamic to elicit and explore new ideas while also allowing individuals to privately identify and vote on those that are most important to them.
3.1
When to Use Nominal Group Technique
The nominal group technique is most useful when the group dynamic and discussion is likely to be helpful in generating new ideas from all attendees, but where it is also desirable to avoid the discussion from being dominated by outspoken individuals. The approach is inclusive and empowering for all participants, as concepts are identified and voted on by each individual rather than as a group. It can be useful for sensitive or controversial topics, or where participants have difficulty generating
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ideas or contributing via other means (e.g., surveys or interviews) (Porter 2013). Applications include research priority setting, identification of healthcare needs, patient preferences, and in establishing core outcome sets for trials in a particular field (Urquhart-Secord et al. 2016; Singh et al. 2015; Dening et al. 2012; Corner et al. 2007).
3.2
Participant Selection, Recruitment, and Group Number
Participants should have expertise or personal experience relevant to the topic under discussion. The sampling strategy often aims to maximize diversity of input within the scope of the research aims, but depends on the research question and logistic concerns. For example where the aim is consensus among international stakeholders with different roles, a purposive sampling strategy is preferred in order to achieve diversity of input and perspectives present in the discussion (Cho et al. 2019). Participants may be selected to ensure input from people of different ages, genders or sexual orientation, ethnicity, educational attainment, resource backgrounds, or health states. Purposive sampling may also be used to enrich input from neglected sectors of the community (Corner et al. 2007). Convenience sampling or snowball sampling may be used by themselves or together where accessing prospective participants is difficult (e.g., domestic violence) or relate to a sensitive topic (e.g., substance addiction, blood-borne viruses). The technique works best with between 6–8 participants per group, but this may mean aiming to recruit 8–12 participants, as some may not attend. Fewer participants may mean suboptimal use of the group dynamic to generate discussion and new ideas, while too many could mean not all participants’ opinions are adequately heard. The number of groups required can vary; however, the aim is similar to that of focus groups (i.e., thematic saturation, where groups are held until no new ideas or concepts are identified). Recruitment internationally may require ethics approval at different sites, and include culturally equivalent participant-facing recruitment materials. As with focus groups, participants may be reimbursed (e.g., travel expenses) and should be free to leave at any point without providing a reason.
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The Facilitator and Setting
The facilitator (or moderator) is key to the quality of the data obtained during the discussions (i.e., breadth and depth). The facilitator should not hold a position of power relative to participants (i.e., their physician) as this may limit open discussions, and they should have adequate content knowledge of the topic being discussed. An understanding of the desired outcome of each group is key (i.e., a list of concepts and their priorities), so they can direct the discussion while keeping the group on schedule. Questions or scenarios posed early on should be open-ended for broader generation of ideas, and then move to more closed questions when seeking to understand specific reasons for priorities. Facilitators should prompt
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and help elicit participants’ views while being respectful and nonjudgmental, using the same devices employed in focus groups. They should ensure confidentiality within appropriate limits, and aim to set a relaxed and conversational mood by building rapport between attendees who may not know each other. Groups may be held in different countries and different languages using a properly translated, culturally equivalent run sheet. This can help achieve diverse input, novel perspectives, and buy-in that can increase legitimacy and transferability of findings to other settings. However resource challenges are not insignificant, with the need to obtain ethics approval at all sites, translate patient-facing materials, have facilitator(s) fluent in different languages, and availability of high fidelity backtranslation for the analysis. For example, in determining outcomes important to people with aphasia, 16 nominal groups were conducted across 7 countries in 4 languages following ethics approval at all sites (Wallace et al. 2017). To ensure consistency, a procedural manual was created, site coordinators could view a video recording of the pilot group, and a primary investigator was present for each group. Bilingual facilitators conducting groups in languages other than English backtranslated transcripts into English. The physical setting is also important and can assist with these goals. It should be a nonclinical, power-neutral, and culturally sensitive setting that is both physically and financially accessible to attendees (e.g., wheelchair access, reimbursement for parking). Hanson et al. (2019) determined trial outcomes of importance to young persons with chronic kidney disease and their families by conducting 16 groups in 3 countries. In addition to the nonthreatening, child-appropriate setting, comfort measures including refreshments, water, and a short break were provided to help reduce psychological barriers and prompt interaction. An ice-breaker question or exercise can be useful if participants do not know each other.
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How to Conduct the Nominal Group Technique
In general, there are four key phases to the nominal group technique that may take between 60 and 90 min; additional discussion phases may also occur. For example, an open-ended discussion may be held prior to the formal identification and voting phases to encourage dialogue and the exchange of ideas, or following the voting phase. The four phases of the NGT are: 1. Silent, independent generation of ideas: The facilitator poses a question or scenario to the group and asks participants to write down their ideas or concepts. Participants may write down all ideas or only the most important ones. This step is done individually and in silence so as not to influence other participants and may take perhaps 5–20 min. How the question is posed is critical, it should be precise and unambiguous to limit responses that are out of scope. 2. Round-robin recording of ideas: Going around the group, each participant contributes one idea at a time and the facilitator writes these in turn on a whiteboard or flip-chart for all the group to see. The facilitator may briefly clarify
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each idea as it is nominated but refrains from extended group discussions at this point. This continues until no new ideas are being raised, or the group decides the most important ideas have been raised. This phase may take around 20–25 min (Manera et al. 2019a; Cho et al. 2019). 3. Group discussion: After creating an initial list, the group then clarifies, elaborates, or defends each idea in turn. The facilitator may guide the group to refine certain ideas and whether they should be reframed, split into different ideas, grouped together, or add new ideas if omitted. This step harnesses the group dynamic to help elicit the rationale behind each idea, the perspectives that reflect their conceptualization(s), and ensures that all participants have the same understanding for each idea. Rich qualitative data is generated during this phase as participants may have different conceptualizations or even disagree, and researchers may record the discussion for subsequent qualitative analysis. With international groups, this phase can be important to explore cross-cultural similarities and differences. 4. Independent voting: In this phase, participants independently prioritize ideas on a list provided to each participant. Participants may score, rank, or rate either all the ideas or a subset of those identified. For example, they may rank the top five to ten, or all the ideas (or as many as possible) from most important to least important (i.e., most important is rank 1, next most important rank 2, and so on) (Dening et al. 2013; Hanson et al. 2018; Irving et al. 2014). Alternatively, they may only nominate the most important or give each idea a score between 1 and 5 (Corner et al. 2007). To further prompt and help explore diverse participant perspectives, participants can share their voting (e.g., top 3) with the group and explain their reasons (depending on the particular topic and group).
3.5
Data Analysis
The nominal group technique may generate semiquantitative data from the voting stage and qualitative data from discussions. The data are inter-related, as the focus of the qualitative analysis is to synthesize and try to understand the context and reasons behind the ideas generated and their prioritization. How the quantitative data is handled depends upon the method used for eliciting participants’ priorities. Different groups may generate slightly different lists of items prior to voting because not all items are nominated each time, or new ones are identified. Additionally, participants may rank different items meaning that items may not be voted upon in all groups or have a score for all participants in a group. The simplest approach is where priorities were determined using a score (i.e., between 1 and 3) for a fixed set of items (i.e., top five priorities) (Aspinal et al. 2006). In this case, scores for each item can simply be summed across all groups and participants, or a mean score calculated for all participants who prioritized the item (Urquhart-Secord et al. 2016). The above methods do not account for all available information, as we have accounted for the scores but not for the frequency of participants voting for a
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particular item. The relative importance score is one approach that accounts for the individual scores but also the number of times an item is nominated or voted on. Values range between 0 and 1, where values closer to 1 indicate a highly prioritized item and those closer to zero indicate infrequently or poorly ranked items (Carter et al. 2020; Manera et al. 2019a). Confidence intervals can be obtained by bootstrapping. The qualitative data can be managed and analyzed in a similar way as for a focus group. The discussion can be audio recorded, transcribed, and imported into data management software such as HyperRESEARCH or NVivo. There are different analytic approaches that may be used (i.e., thematic analysis, grounded theory, content analysis), however a common approach in healthcare research is thematic analysis. In thematic analysis, the transcriptions are read line-by-line and a preliminary set of narrow concepts (or codes) are identified from and assigned to portions of the dialogue, which serve to summarize and organize the data. Through an iterative process of reading and coding, codes are grouped into initial clusters of similar ideas called themes. This is then checked against the transcripts for how well it explains and captures participants’ perspectives. Preliminary codes and themes are successively refined until, after several cycles, the coding tree is finalized and the transcripts are coded fully. In international consensus work, these themes should fully capture and summarize the diverse reasons that underpin item priorities including key similarities and differences between different linguistic or cultural groups (Manera et al. 2019a).
3.6
Methodological Variations and Practical Aspects
The nominal group technique has been conducted with several modifications since its original use in healthcare research. The most common of these is to conduct it in combination with a focus group. Because the nominal group technique asks participants about a particular question or scenario, it may be a relatively “closed” line of investigation. Depending upon the research question, it may be desirable to utilize the more open technique of focus group to stimulate discussion before or after the NGT process. This can provide additional valuable qualitative data, and improve item generation and exploration. Of relevance to the global setting, the nominal group technique has been combined with international workshops and can be held online with appropriately trained personnel and technological support (de WolfLinder et al. 2019; Mason et al. 2021). Other modifications are commonly made to the first stage (item generation) or the last stage (voting). The first stage may be omitted to save time where a list of items already exists or has been identified from previous research (i.e., review of the literature, survey). There may be variations (as discussed above) in terms of how priorities are determined (e.g., scoring or ranking). Other variations with voting include giving participants the option of re-ranking or revising their priorities after the initial voting and discussion. Scoring can also be more nuanced, where participants allocate their own “weights” to different items or have a fixed number of
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points to “spend.” This allows for more flexibility in the scale used to judge priorities, and does not assume value differences between items are equal. Common problems with the nominal group technique are similar to those in focus groups, such as the participants who may dominate the discussion or are hesitant to speak, or “unfocussed” discussions that waste time. These pitfalls may be avoided by adequate preparation, using an experienced facilitator and establishing “housekeeping” rules at the start. For example, the facilitator can ask participants to not to talk over each other, and reminding them to allow differences of opinion to be fully expressed. Facilitators can also use information from the discussion and voting phases along with prespecified prompts to help deflect or redirect discussion, or help probe for greater depth. Perspectives may differ and these may be confronting or even frightening for some participants. Rude or threatening behavior should not be tolerated but should be recognized that this often reflects anxiety or grief. As with focus groups, researchers should be alert to culturally important aspects that need to be observed when conducting groups with diverse populations. Using a facilitator or co-facilitator from the same culture, or facilitators with cultural training and sensitivity may be needed.
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The Delphi Method
The Delphi method (also called a Delphi survey or panel) is a well-recognized and commonly used consensus method. Developed by the Rand Corporation in the 1950s, it has since been applied in diverse disciplines and more recently in healthcare has been used extensively in the development of core outcome sets. The method consists of iterative rounds of surveys that are completed by participants until consensus is achieved. The participants (or panelists) can be from the same or diverse backgrounds with different content knowledge, expertise, or experience. In the first round, participants typically respond to open-ended questions or scenarios using free text boxes, rate or score items on a Likert scale, or complete a combination of these. Following the first round, participants can review a summary of all stakeholder responses from the preceding round before completing the next round where they may adjust their answers. Participants are exposed to viewpoints that may differ from their own in an environment safe from confrontation, direct criticism, and time pressure. They can reflect on this information considering it may influence their opinion. In this way, a shared understanding develops between panel members and this can lead to an acceptable compromise in the opinions expressed (i.e., consensus). Several rounds may be held until consensus or a predetermined stopping rule is reached. The advantages are anonymous, asynchronous reflection by individuals with less time and group pressures, and the ability to reach large numbers of people internationally when delivered online (Chevance et al. 2020). Drawbacks include a lack of standardization in the method, uncertainty about the optimal number of rounds, how many stakeholders or groups are needed and in what proportions, and the definition of consensus (HumphreyMurto and de Wit 2019).
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Purpose and Aims of the Delphi Method
The Delphi method can be used for establishing agreement upon a set of health issues, the absolute and relative prioritization of these issues, and to achieve consensus around which are the most important. Early rounds may be used for brainstorming and item generation, and later rounds for prioritization and consensus. Increasing internet access worldwide has led to several groups performing online large-scale, international Delphi surveys among diverse panel members (Chevance et al. 2020). The conduct of Delphi surveys has been reviewed extensively elsewhere and many aspects are common to surveys in general, and so are not described in great detail below (Williamson et al. 2017). Rather, this chapter provides an overview and consideration of the role of the Delphi survey when seeking a global consensus.
4.2
Panel Composition and Recruitment
The selection of participants is critical to ensuring a robust and legitimate consensus that can be applied in the real world. Participants from stakeholder groups are eligible when they are invested in the topic under discussion and bring relevant expertise, content knowledge, or lived experience. They may be from one or many stakeholder groups, and any consensus reached should be relevant and applicable to all stakeholder group(s). Though originally conducted using hard copies, the recruitment and conduct of most Delphi surveys is now performed online often with a computer-adapted design. Large numbers of panelists may be obtained by disseminating recruitment material via multiple social media platforms (e.g., Twitter, Facebook groups) and e-newsletters, or targeted emails through investigator networks, contacting patient advocacy organizations and professional societies. In addition to the usual survey biases (e.g., higher health literacy, motivation), this approach may also preferentially recruit younger participants from higher socioeconomic backgrounds in middle- to high-income countries who have better access to digital resources. Sampling may be purposive, use a snowball strategy or a combination of these. For international clinical or research applications, panelists may include those from patient groups, care partners, community groups, patient advocacy groups, various health professionals, policy makers, funders, resource gatekeepers, or regulator bodies (Cho et al. 2020; Manera et al. 2019b). To increase transferability of the findings, participants should also be diverse in terms of age, gender, ethnicity, education, resource backgrounds (e.g., including those from rural areas, low- and middle-income countries), and relevant health states to reflect the range and depth of perspectives present among stakeholders. Importantly, diversity achieves wider buy-in and disseminates the concepts and evolving consensus while increasing legitimacy (Tong et al. 2018). What number of participants is required overall, and how many from each stakeholder group? This is often a practical consideration (e.g., eligible and accessible experts) but is ideally as many as possible. Participant numbers range from less
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than 20 to more than 1000 in the literature (see Table 3) (Lee et al. 2020; Evangelidis et al. 2017). As above, recruitment should be inclusive and seek to avoid “token” input from under-represented groups. In core outcome set development, though patient involvement is increasing it remains proportionately lower and from fewer countries than healthcare professionals, particularly in low- and middle-income countries (Lee et al. 2020; Barrington et al. 2021). Proportional representation is impractical, especially on a global scale, and it is more important to focus on sufficient diversity of input across and within stakeholder groups. Though resource-intensive and less commonly performed, Delphi surveys can also be conducted in multiple languages (see Table 3 and “Consensus methods in a global setting” below) (Lee et al. 2020; Barrington et al. 2021). As for any multilingual survey, patient facing material, recruitment, and survey itself are first forward translated into different languages (Collins et al. 2021; Weissenborn et al. 2020). This can then checked for fidelity by back translation, cognitive interviewing, and expert panel review ideally with native speakers who have sufficient content knowledge from the various stakeholder groups. All comments are cross translated to all languages and shared within the next round (Logeman et al. 2020). Surveys for each new round are forward translated and once all rounds are complete, comments are back-translated for qualitative analysis (van Rijssen et al. 2019). This process may take time and delay the start time of later rounds, which can lead to lower retention rates over subsequent rounds. Novel approaches include the use of one participant facing multi-language interface (Beuscart et al. 2017).
4.3
Data Collection and Analysis
4.3.1 Questionnaire and Items Included in the Survey Preparatory material and the survey introduction should adequately equip participants so they can maximally contribute their expertise. Not all panelists may have the same cultural lens or knowledge base, and some may not understand terms or ideas implicit within the items. For example, when conducting a Delphi to determine a core outcome set, the idea of a health outcome may need some introduction (Williamson et al. 2017). The participant-facing material and survey items should be piloted beforehand with members of each stakeholder group, especially where conducted in more than one language. The items included within a Delphi survey may be identified in the first round(s) or they may be prespecified based on prior knowledge or research, with explicit justification for their inclusion (Sinha et al. 2012; Carter et al. 2021). Where items are prespecified, all stakeholders should be involved and the decision-process should be transparent and equitable, however often the items are determined by prior consensus work that used different qualitative methods to ensure methodological triangulation (e.g., focus groups, Delphi survey, workshops) (Carter et al. 2019). Participants can be given the opportunity to nominate new items in early rounds,
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with a prespecified threshold for inclusion in subsequent rounds (i.e., included in Round 2 if proposed by >10% of respondents in Round 1). Some surveys may drop items in subsequent rounds to help participants focus on higher priority items, reduce survey fatigue and attrition. Cut-offs for inclusion or exclusion of items in subsequent rounds should be specified a priori. These cut-offs may be based on previous similar research or follow discussion among the major stakeholder groups or steering committee (where one exists). Where there are more than two rating rounds, cut-offs should be less stringent (more inclusive) in earlier rounds so as not to exclude items that may be more highly prioritized following feedback, but may be more restrictive in later rounds (Williamson et al. 2017).
4.3.2 Methods of Prioritization Prioritization is commonly part of Delphi surveys, and the absolute priorities of items may be determined using a rating scale such as a Likert scale, ranking items, or allocating points. A scale used frequently in core outcome set development is the 9-point ordinal response Likert scale based on the Grading of Recommendations Assessment, Development and Evaluation (GRADE) (Jaeschke et al. 2008). Here, scores 1–3 indicate an item of limited importance, scores 4–6 important but not critical, and scores 7–9 indicate a critically important item. Participants should be offered the option of selecting that they are unsure, and be able to provide free-text comments next to each item. Determining the relative prioritization of items may also be useful, particularly where all items are similarly highly prioritized and rationing needs to occur. For example, when prioritizing health outcomes most if not all outcomes may have a mean or median Likert score in the “critically important” range (Carter et al. 2021; Cho et al. 2020). Here, researchers can employ a forced ranking exercise such as the Best-Worst scale survey to determine relative priorities (Flynn et al. 2008). Participants are presented with several sets of randomly selected survey items and must select the most important and least important from each set. Analysis is performed using a multinomial logistic regression model, and the outcome coefficients for each stakeholder group represent the relative priority of items compared to other items. 4.3.3 Providing Feedback from Previous Rounds Participant feedback based on responses in the previous round is the key feature of a Delphi survey and allows differences of opinion to be reconciled across rounds. A summary descriptive statistic is generated for item scores from each major stakeholder group in the previous round (e.g., mean, median, or histogram Likert scores) (Williamson et al. 2017). The summary statistic for each item is then presented for participants to review along with their own response from the previous round before considering their response for the same item in the next round. Comments in the previous round may be grouped by stakeholder type or language and presented alongside the descriptive statistic to provide context and promote exchange of ideas. Comments should be reviewed by the research team to ensure readability, and to censor offensive or harmful language.
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4.3.4 Number of Rounds There are usually two or three rounds in a Delphi survey, but this may vary anywhere from two to more than six (Veugelers et al. 2020). How many are required depends on the aims of the survey and upon the definition of consensus used, but a major limiting factor is survey fatigue and attrition due to participant drop-out. In the classic Delphi design, the first round is unstructured and open-ended to promote item generation. To minimize the number of rounds, this may be modified to a structured format and pre-populated with items, which are then further refined or included unaltered (Veugelers et al. 2020). The number of rounds may be as few as two where items are prespecified and consensus is expected to be achieved based on similar previous research. However, three rounds have been suggested as adequate for consensus in most settings (Williamson et al. 2017). Completion time may depend on the stakeholders themselves, time of year (e.g., holidays), the number of items and how complex the questions are. Two to three weeks has been suggested as a reasonable window for each round. Participant drop-out may affect the validity of the consensus achieved, so it is desirable to conduct the least number of rounds required for consensus and minimize the intervals between rounds. Retention rates vary with the number of rounds; however a target of 80% or more for each stakeholder group has been suggested (see Table 3) (Williamson et al. 2017; Veugelers et al. 2020). When conducting surveys internationally, it is important to ensure items are clear and simple, and use a consistent layout. Be mindful of different cultural holidays or events. The need to translate surveys and comments may increase the time between rounds and affect retention. Strategies to aid retention include reminder emails, phone calls, and regular progress reports; for further strategies including for recruitment see Hall et al. (Hall et al. 2018). Researchers should assess retention rates by stakeholder group and region (e.g., role, language) and target those with lower rates, but be mindful of reasons why rates may be low (e.g., distress, death, illness). The direction and size of attrition bias on priorities is difficult to ascertain, as this may be highly individualized and vary according to feedback from the previous round(s). An assessment of possible attrition bias can be made by examining the distribution of participant scores by stakeholder group among those who only completed round 1, compared to those who completed Round 1 and 2 (Williamson et al. 2017). 4.3.5 The Definition of Consensus As prioritization and consensus are intrinsically relativistic, there are no standard definitions of consensus that apply in all cases. Consensus rules vary and published studies do not always specify how thresholds for consensus were derived (Humphrey-Murto and de Wit 2019). Commonly used thresholds for consensus upon an item are between 75% and 90% of participants within each stakeholder group deeming the outcome as critically important (i.e., scoring 7–9 on the ninepoint Likert scale). Percentage criteria can also be combined with other thresholds (e.g., mean, median) to define consensus (Evangelidis et al. 2015). Because there may be heterogeneity of opinion within a stakeholder group, some authors suggest accounting for the percentage of participants rating the outcome of little or no
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importance (i.e., consensus on an item is achieved when >70% participants rate it critically important and