Health Communication and Disease in Africa: Beliefs, Traditions and Stigma 981162545X, 9789811625459

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Health Communication and Disease in Africa Beliefs, Traditions and Stigma Edited by

b a n kol e fa l a de m e rc y m u r i r e

Health Communication and Disease in Africa

Bankole Falade · Mercy Murire Editors

Health Communication and Disease in Africa Beliefs, Traditions and Stigma

Editors Bankole Falade South African Research Chair in Science Communication Centre for Research on Evaluation Science and Technology Stellenbosch University Stellenbosch, South Africa

Mercy Murire Wits Reproductive Health Institute University of the Witwatersrand Hilbrow, South Africa

ISBN 978-981-16-2545-9 ISBN 978-981-16-2546-6 https://doi.org/10.1007/978-981-16-2546-6

(eBook)

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 This work is subject to copyright. All rights are solely and exclusively licensed 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 Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore

Foreword

It is an honour to write the Foreword for this very timely and welcome volume that challenges us to develop new ways of ‘seeing and doing’ in the field of health communication in African settings. Much formal health communication in Africa has been imposed on vulnerablecommunities in a top-down way. Programmes are often implemented as part of internationally funded projects, filtered down through national and regional level policies and leadership by actors who are not always part of target communities. Outcomes have been mixed. There have been some inspiring success stories. There have also been disappointments with communication programmes not achieving their anticipated changes in health behaviours most likely to facilitate prevention, care or treatment of health problems. This ambitious and important collection tackles the challenges facing health communicators head-on—highlighting how health information and communication strategies often fail to take adequate account of vital influences on health behaviours. These include the day to day material realities of survival in conditions of poverty and intersecting health-damaging inequalities linked to factors such as gender, ethnicity,

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disability and age. They also include the varyingly health-enabling and health-limiting impacts of religious, traditional and cultural beliefs, and varyingly helpful social norms which crystallise into common senseknowledge and associated habits which may or may not align with the values and goals of the health communicators. The wide-ranging chapters provide fascinating studies of how social contexts impact efforts to facilitate health-enablingbehaviour change across a variety of mental, physical and social health challenges. They also begin to map out an ambitious road map that challenges health communicators to develop new approaches that promise a more effective bridging of the frequent gulf between the communication of western scientific approaches and the real-life experiences and indigenous knowledge systems of their target audiences. The authors are well-qualified to lead this challenge. Both have extensive practical and academic experience in public healthcommunication. Falade started his career in journalism in Nigeria, and Nhamo-Murire in community health in Zimbabwe. Both used these experiences as stepping stones to doctoral study and teaching in the field of Social Psychology at the London School of Economics (LSE). This is a world-leading centre of research in the editors’ inter-locking fields of Social and Public Communication and of Health, Community and Development. Since then both have established themselves as highly respected players in their areas of expertise in South Africa. They have used their extensive networks to assemble an impressive array of expert authors from various African countries, including Kenya, Malawi, Morocco, Nigeria, South Africa, Uganda and Zimbabwe. Chapters throw vital social psychological light on health communication challenges ranging from issues such as teenage pregnancyand HIV/AIDS to relatively new or neglected topics including COVID-19, mental health, obesity, Alzheimers’ Disease and ‘selfitis’ (smartphone selfie addiction). With a good balance of theory and case studies, accompanied by detailed reference lists that draw on a judicious mix of established and novel resources—this book will be of great value to health practitioners and policy-makers, researchers and students. Chapters showcase a range of theoretical approaches to health communication. These are skilfully linked by the editors’ Introductory and Concluding chapters. Together

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they provide the basis for a theoretical toolkit for the development of actionable understandings of the processes through which abstract scientific knowledge is communicated to real people in real contexts— and the social and psychological factors that mediate the success of a communication. New sources of information, which may contradict highly valued cultural, religious or traditional beliefs will often meet with initial resistance. The book challenges us to think about the social and psychological processes through which previously taken-for-granted knowledge may become problematized as people grapple with new ideas and the associated new ways of being, seeing and acting that they imply. It also pushes us to think through the implications of these new insights for the practice of communication. The volume does not shy away from complexity in recognising, for example, how religious beliefs may simultaneously obstruct or advance health. Neither do they avoid complexity in advocating a more complex balance of global and local approaches. Chapters provide numerous practical ways in which this balance might be reached. These include, to cite only a few examples, the significant benefits of increased interaction between health communicators and their audiences (as in the use of community radio), the importance of communicating in local languages in particular settings, the use of existing indigenous practices—such as initiation schools and local mentors—as vehicles to transmit healthrelated knowledge, as well as embedding health dialogue in existing socialnetworks such as respected elders, market women, musicfestivals, story-telling circles and so on. Radio, TV and internet obviously have high appeal for urban audiences, but may have less traction in some rural settings where access to these is limited. Furthermore local sources of new information may be more willingly trusted in settings where people are suspicious of government programmes. These are but a few concrete examples of communication strategies that acknowledge that whilst health professionals come with vital scientific knowledge, communities are also experts in their understandings of what behaviours are feasible in the contexts of their daily lives. They are vital partners in efforts to translate scientific knowledge into worldviews and practices that make sense to the intended beneficiaries of health

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communication efforts, and in formulating new health behaviours that are realistic in the context of their everyday lives. This book presents a compelling vision of an approach that is deeply rooted in African scholarship. This is a vision that pays close attention to the big picture of macro-social context. It also takes full account of the daily lives and world-views of those whose lives are distant from the scholarly theories, global guidelines and national and regional strategies that dominate this field of practice. The editors and authors are to be warmly congratulated on a volume that promises to provide an impetus for the development of a much-needed indigenous African approach to health communication. Catherine Campbell Emeritus Professor of Social Psychology Department of Psychological and Behavioural Science London School of Economics London, UK

Contents

Part I 1

Global Inequalities in Health and Africa Bankole Falade and Mercy Murire

Part II 2

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Conceptual Approaches

Health Beliefs and Communication: Conceptual Approaches Bankole Falade

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Understanding Community Development Approaches in Health Mercy Murire

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Part III 4

Introduction

Stigma and Health

Alzheimer’s Disease—Molecular Defect, Public Perceptions and Stigma in South Africa Tando Maduna and Ben Loos

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Contents

Towards a Better Understanding of HIV Prevention Stigma, Religion and Health in Zimbabwe Definate Nhamo and Mercy Murire

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Sinikithemba Gospel Group and the Grassroots Struggle Against HIV/AIDS Stigma in South Africa Thembela Vokwana

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Part IV 7

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“Fat People Are More Respected ”: Socio-Cultural Construction of Obesity and Overweight Risk & Prevention in Ugandan Communities Stella Neema, Gerald Mutungi, Sheila Mwebaze, and Silver Bahendeka

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“… I Had to Do This to Survive”: HIV Risk Environment of Female Street Sex Work in Nigeria Ediomo-Ubong E. Nelson

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Part V 9

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Reproductive Health, Traditions and Beliefs

The Sociolinguistic Functions of English and Chichewa in Gynaecological Consultations in a Chichewa Speaking Hospital Setting in Malawi Marion Chirwa Kajombo Evil Spirits and Martyrdom as Perceptions of Pre-eclampsia Among Traditional Birth Attendants in Kano, North-West Nigeria Ruqayyah Yusuf Aliyu

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Risk Perception and Health

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Mental Health

Culture and Mental Healthcare Access in the Moroccan Context Sophia El Ouazzani, Inmaculada Zanga-Martin, and Rochelle Burgess

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Social Media Effects on Mental Behaviour: A Study of “Selfitis” Among Undergraduates of a Nigerian University Ngene Andrew Hyacinth

Part VII 13

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Combating Malaria in Nigeria’s Rural Communities Through Indigenous Communication Strategies Ntiense J. Usua

15 The value of the Fusion of Indigenous and Contemporary Knowledge in Developing Communication as Interventions to Reduce Teenage Pregnancy in South Africa Konosoang Sobane, Isaac Riba, and Wilfred Lunga

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Conclusion

Is Science Enough? Health Communication and Health Enabling Environments Bankole Falade and Mercy Murire

Index

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Religion and Health Communication

COVID-19, Religious Institutions and the Accommodation of Science Bankole Falade

Part IX

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Communities, Western and Indigenous Communication

Collective Change Through Mass Media: Engaging Adolescent Girls Through Interactive Radio to Promote AIDS-Free Communities in Kenya Deborah Sambu, Claudia Abreu Lopes, and Victor Apollo

Part VIII

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List of Figures

Fig. 4.1 Fig. 4.2 Fig. 4.3 Fig. 5.1 Fig. 13.1 Fig. 13.2 Fig. 13.3 Fig. 13.4

Comparative summary of familial and sporadic Alzheimer’s disease The molecular aspects of Alzheimer’s disease development Autophagy dysfunction and a decline in Aβ clearance Socio-ecological model Thematic network on reasons for school dropout Thematic network on vulnerability of adolescent girls and young women to HIV infection Thematic network on whether or not to disclose HIV status to a teacher Thematic network on consequences of disclosure HIV status

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List of Tables

Table 4.1

Table 6.1 Table 7.1 Table 12.1 Table 12.2 Table 12.3

Summary of autophagy-enhancing therapeutic agents and their mechanisms of action (adapted from Djajadikerta et al., 2019) Examples of counter-discursive acts in IThemba and their signification Sampled districts and number of participants per method Distribution of respondents by Demographic Characteristics (N = 381) Distribution of responses on awareness, perception and factors responsible for excessive selfie taking Cross tabulation of some of the variables in table 2 along gender lines

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Part I Introduction

1 Global Inequalities in Health and Africa Bankole Falade and Mercy Murire

HIV continues to be a public health issue worldwide, having claimed more than 32 million lives and with 37.9 million people living with the disease. In 2018, an estimated 1.7 million people were newly infected with 770,000 deaths (WHO, 2019a). In the period under review, the WHO Africa Region (Eastern, Southern, Western and Central) was the most affected, with an estimated 25.7 million people (68% of global infections) living with the disease of which 1.1 million were newly infected (65% of global new infections) and an estimated 470,000 people dying (61% of global deaths) from AIDS—related illnesses (WHO, 2019b). The number of new infections in Europe in 2017 was 160,000, 82% from the Eastern part, 14% from the Western part and 4% from the Central part (WHO, 2019c). In 2018 in the WHO Africa B. Falade (B) Stellenbosch University, Stellenbosch, South Africa e-mail: [email protected] M. Murire University of the Witwatersrand, Hilbrow, South Africa © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_1

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region, 74% of the estimated 1.1 million new infections were from the WHO East and Southern Africa Region (WHO, 2020). Continental and regional differences in new infections highlight the gaps in health services and uptake of health information across the world. Key populations (men who have sex with men, people who inject drugs, people in prisons and other closed settings, sex workers and their clients, and transgender people their clients) in 2018, accounted for 64% of new HIV infections in West and Central Africa, and for 25% of new HIV infections in the East and Southern African sub region. Comparatively, key populations and their partners accounted for around 95% of new HIV infections in Eastern Europe and central Asia and in the Middle East and North Africa in 2018 (WHO, 2019b). These data show that HIV is largely contained within the highly vulnerable key population groups in Eastern Europe, central Asia, Middle East and North Africa and to a lesser degree in West Africa compared with larger spread among different population groups in East and Southern Africa. HIV, Malaria and Tuberculosis are among the top ten leading causes of death in lower income countries but none appears in data for upper middle-income and high-income countries. Only tuberculosis appears for lower middle-income countries. The burden of malaria was heaviest in the Africa Region, with almost all countries in lower income bracket, where an estimated 93% of all malaria deaths occurred, and in children aged under 5 years, who accounted for 61% of all deaths (WHO, 2019d, 2019e). While new HIV infections fell between 2000 and 2018 globally by 37% and HIV related deaths by 45%, Africa appears to be lagging behind other continents in the adoption of prevention strategies and treatment options. This is also true for Tuberculosis where over 25% of deaths from the disease occurred in the Africa region in 2016. In 2016, Africa, accounted for a quarter of new Tuberculosis cases worldwide with an estimated 417,000 people dying of the disease. Nigeria and South Africa are also among seven countries that account for 64% of new TB cases in 2016 (WHO, 2019f). While communicable diseases were responsible globally for three of the top ten causes of deaths in 2016, down from five in 2000, in lowincome countries, they still form seven of the top ten. The ten for 2016 are ischemic heart disease; stroke; chronic obstructive pulmonary disease;

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lower respiratory infections; Alzheimer’s disease and other dementias; trachea, bronchus and lung cancers; diabetes mellitus, road injury, diarrheal diseases and tuberculosis, in order of occurrence (millions). For low-income countries, where much of Africa belongs, the top ten for 2016 in order of crude death rate (rate per 100,000 population) are lower respiratory infections, diarrheal diseases, ischemic heart disease, HIV/AIDS, stroke, malaria, tuberculosis, preterm birth complications, birth asphyxia and birth trauma and road injury. Stroke, ischemic heart disease and road injury being the non-communicable diseases. Comparatively, communicable diseases account for four of ten leading causes of death in lower middle-income countries and one of ten in both upper middle and high-income countries where they are mainly lower respiratory infections. The data shows clearly an association between income groups and causes of death and expands our understanding of health outcomes to include economic circumstances in addition to uptake of health information. Africa’s situation today is worse than the world average in 2000 and much worse than present global averages. Africa is going deeper into health crisis from communicable disease as the rest of the world emerges and turns attention to non-communicable diseases. These wide gaps between Africa and the rest of the world in terms of health outcomes signpost the poor impact of health communication, inaccessibility or non-availability of services and prevailing economic circumstances. With communication, a poor understanding of health behavior, in the context in which it is produced, translates to under informed policy planning and implementation. This in turn feeds into the communication processes resulting in delayed or non-uptake of health interventions. Understanding health behavior in context is thus critical to the design of and successful uptake of health information. Many approaches have been developed to understand the interaction between the message, the multiple processes it passes through and the resources (economic, social and individual) drawn upon by the receiver to decode the meaning of the communication and weigh the options of accepting the health information as premise for behavior and acting in the desired manner. A critical health communication program for behavioral and social change transcends the sending of the message

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to the recipient directly or through a channel. It recognizes that the message can fail to achieve the desired outcomes due to its incompatibility with existing values and beliefs in common sense and the ability of the individual to engage in healthy behaviors. Thus, the meaning of the “message” to the recipient is not a given. It is has a potential for different meanings and consequently different outcomes in diverse contexts. Understanding health behavior in the African context and mapping a way forward is what this book seeks to address. The chapters have been selected to address communicable and non-communicable diseases, specific disease conditions, beliefs about health and stigmatization, western and community based approaches to health communication and thoughts on African communication practices and their integration with western perspectives. This volume is guided by the notions of problematisation and critical consciousness (Foucault, 1972, 1984; Freire, 1974) which call for new approaches with strong roles for historical, cultural and traditional perspectives and the creation of health enabling contexts (Campbell, 2020). Present approaches do not seem to be achieving the desired results fast enough in Africa compared with the rest of the world (WHO, 2019a, 2019b, 2019c). The COVID 19 pandemic has again exposed the gaps in health systems across the world with Africa again on the spotlight over fears the pandemic could have devastating effects on the continent due to the inadequacy of capabilities for research, testing and treatment. Fear of uncontrolled spread was further heightened by the continents relatively high levels of religious beliefs and its implications for the origin, containment and treatment of disease. Campbell (2020) has called for a “fight” for health enabling contexts as part of global public health strategies.

Habits, Social Problems and Problematization New opinions are always suspected, and usually opposed without any reason but because they are not already common. (Locke, 1860, p. 9)

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Nobody that has the least thought or sense of a man about him can live in society under the constant dislike and ill opinion of his familiars and those he converses with. This is a burden too heavy for human sufferance. (Locke, 1860, p. 239)

Berger and Luckmann (1966) argue that humans and their interactions with each other, in a social system, lead to concepts or mental representations, which eventually become habits. Habits are products of “any action that is repeated frequently, becomes cast into a pattern, which can then be … performed again in the future in the same manner and with the same economical effort” (Berger & Luckmann, 1966, pp. 70– 71). Thus, societies are defined by cultural reality or common sense (see Gregoric, 2007; Wagner & Hayes, 2005; Paine, 1776) created through human interaction, dissent is thus rare as the burden is quite heavy and new opinions are always suspected because they are not yet common (Locke, 1860, pp. 9 and 239). Freire (1974) however argues that the role of man is not only to be in the world but through creation and recreation, make and remake cultural reality, change current habits. Humans, Freire argues, can remake cultural reality through “critical consciousness”, a means to transition from magic or naïve perception of reality to critical transitivity. For Freire, the public must create “reality” through both human interaction and critical thinking, a process of defamiliarization or demythicisation of common sense (see Crotty, 1998). Human interaction needs to transform “habits”, which have become social problems. Freire’s notion of “critical consciousness” (Freire, 1974) aligns with the Foucauldian concept of “problematisation” (Focault, 1984) as both call for a step back from current realities and a stripping of the myths that deceive and perpetuate the dominating structure toward the evolution of new approaches to thinking about and solving problems. Freire’s central message, Goulet (1974) argues, is that people must problematize the natural, cultural and historical reality in which they are immersed. Problematization, Focualt (1988, p. 257) argues, is the ensemble of discursive and non-discursive practices that make something enter into the play of true and false and constitute it as an object of “thought”, whether in the form of moral reflection, scientific knowledge, etc. Foucault’s notion

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of thought allows one to step back from a particular way of acting or reacting, to present it to oneself as an object and to question it as to its meaning (Foucault, 1984). Foucault, according to Bacchi (2012) employs the term “problematization” to describe both his method of analysis, which he calls “thinking problematically” which looks not for the one correct response to an issue but to examine how it is questioned, analyzed, classified and regulated in specific contexts. It is a two-stage process including how and why certain things (behavior, phenomena, processes) become a problem and how they are shaped as particular objects for thought. We are concerned in this volume, not simply about public perceptions of diseases in Africa, but to step back and see how they can be problematized through defamiliarization or demythicisation of common sense (Freire1974; Foucault, 1984) and how such realities can be re-created by society for healthier habits (Bacchi, 2018; Winch, 2005; Fredericksen et al., 2015; Vallagarda, 2007). These are the issues addressed in this volume which features communicable and non-communicable diseases, conceptual approaches to health communication, common sense understanding of health and illness, current approaches to change and how rethinking these approaches and integrating traditional communication methods can encourage healthier cultural realities.

Book Sections: Problematizing Habits and Creating New Realities The book is divided into sections: Introduction, theoretical approaches, stigma and health, risk perception and public health, religion and health, reproductive health, traditions and beliefs, communities, western and indigenous communication, mental health and conclusions/way forward. The sections reflect the overall theme of the book while the chapters were selected to focus on communicable and non-communicable diseases (malaria, HIV/AIDS, Alzheimer’s, pregnancy issues, etc.). Theoretical approaches: The two chapters that make up this section examine some of the theoretical approaches in literature used to unpack communication in general and health communication as a specialized

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sector. Some of these feature across the chapters enabling better informed understanding of health and illness across Africa. Communication and health communication examines both classical and modern theoretical approaches in communication studies in general and health communication in particular. It provides brief introductions to conceptual approaches from Austin’s Speech Acts (actor) through Habermas (conditions for acceptance) and Moscovici (types of acceptance) to individual centered models of health behavior and community level approaches. Moscovici’s social representations theory, for example, offers explanations to the relationship between religion and science during the COVID19 pandemic. The Pope, in an empty St Peters during Easter and the closure of Kabba, Islam’s holiest site (Perring, 2020; Rocca, 2020) are examples of how religious institutions accommodated science, a competing way of knowing. Community Development approaches chapter examines the concepts of social identity, empowerment, critical consciousness, social capital and power. These concepts gives a valuable beginning for addressing the relative lack of social psychological attention to community level determinants of health in understandings and responses to HIV and AIDS in southern Africa. The chapter draws on the health enabling concept (Campbell et al., 2007), that argues that it’s through community group participation that people are more likely to become HIV competent. HIV competence is defined in terms of the ability of a community to work collectively to negotiate new behavioral norms (around prevention, care and treatment) as well as transforming stigmatizing attitudes. Stigma and health: The section on stigma, a spoiled identity (Goffman, 2009), brings together the scientific and common sense knowledge of diseases, constrains to the integration of those presenting certain health conditions which include stigma and the use of preventive measures in care. Alzheimer’s disease—molecular defect, public perceptions and stigma describes the processes associated with the development Alzheimer’s, a neurodegenerative disease which leads to cognitive impairment and memory loss and is not easily recognizable but is increasing in prominence in African communities as the population ages. Largely misunderstood, the chapter shows in detail, for enhanced understanding, the development of the molecular defects associated with

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the two types: “Sporadic AD” (sAD) also referred to as late-onset AD with the main risk factor identified as aging and most cases presenting after age 65 and “Familial AD” (fAD), referred to as early life onset AD which occurs at younger ages and is mostly coincidental with a family history of dementia. The key pathological hallmarks of the disease center around the increased localization, accumulation and deposition of abnormal deposits called amyloid beta (Aβ) plaques and tau neurofibrillary tangles (NFTs) in extracellular and intracellular spaces respectively as a result of a defect in protein degradation. It highlights the differences between scientific understanding and community level perceptions which often leads to stigmatization and affects the wellbeing of those with the condition. The chapter stresses the importance of science communication for public understanding and the integration of those with the condition. Toward a better understanding of HIV prevention stigma, religion and health in sub-Saharan Africa examines HIV as a major public health issue, the associated stigma and continuing tensions over prevention between scientific advice and religious injunctions. If focuses on the introduction of Pre-exposure prophylaxis (PrEP) in Zimbabwe as a daily pill for those who are at substantial risk such as sex workers, men having sex with men, adolescents and young women. The chapter uses the socio-ecological model to unpack the role of the individual, family and peer networks, the church, the community, service delivery and enabling environment in the uptake of PrEP. Sinikithemba Gospel Group and the Grassroots Struggle against HIV/AIDS Stigma in South Africa examines the role of music, as a communication tool, in community struggles against stigma, denial and stereotypes held about HIV/AIDS and people living positively in post-apartheid South Africa. It focuses on the Sinikithemba Gospel Group and its performances locally and abroad to highlight central concerns about HIV/AIDS, the devastating effects on the population and the struggle for the right of access of ordinary citizens to anti-retroviral care. The chapter argues that music continues to be at the roots of activism for various forms of freedom in post-apartheid South Africa in the struggle against pervasive inequality of access to public healthcare, education, housing and various other amenities. The discussion here also relates to the debates in the section on communities, western and indigenous communication.

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Culture, risk perception and public health. Risk perception varies across cultures and among social groups within culture informed by a mix of analytical and experiential systems of knowing (Star, 1969; Slovic et al., 2004). Culture plays a crucial role in help-seeking behaviors, compliance to treatments and comprehension of illnesses among others. Culture is thus critical to the uptake of health information. Fat People Are More Respected: Socio-Cultural Construction of Obesity and Overweight Risk & Prevention in Ugandan Communities examines the social and cultural construction of obesity in Ugandan communities using interviews and focus group discussions. This is in the context of rising threats posed by non-communicable diseases in a country already overburdened by the volume of infectious diseases. While obesity is generally viewed as a health issue in western societies, in Uganda, (and indeed many parts of Africa) being fat is socially acceptable. Study participants’ views range from acceptance to resentment with being fat associated with wealth, prestige and good health. Non obese persons are also desirous of gaining weight to be compatible with social norms. These common sense perceptions of obesity need to be aligned with healthier options through health education or the country risks a double epidemic of communicable and non-communicable diseases. “… I had to do this to survive”: HIV risk environmentof female street sex work in Nigeria uses qualitative data collected in South-South Nigeria to describe the work environment of female street-based sex workers that creates vulnerability to HIV. It examines the impact of social, economic and physical factors and well as policies and laws that criminalize sex work. It argues that understanding the HIV risk environment of sex workers is important for the formulation of interventions to prevent its transmission among this at risk group. Religion and health communication: The Catholic community of France in the 50s saw Sigmund Freud’s psychoanalysis, then a new scientific phenomenon, where the patient tells his stories to the psychoanalyst, as akin to a confession where the penitent tells his story to the priest and sought to incorporate its ideas into the Catholic doctrine. This approach has largely informed the relationship between the church and science over the decades, the accommodation of almost all new science into its dogma. Covid-19, religious institutions and the accommodation

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of science examines the outbreak of the novel coronavirus, COVID 19 and its effect on communal religious practices, public perceptions of the disease and attitudes of believers across Africa to the containment measures. The physical distancing rule to contain the virus was at variance with the communal practices of close contact in fellowship, shaking of hands and large gatherings for joint worship. The outbreak also coincided with two important events in the Christian and Islamic calendars: the Lent and Ramadan respectively, both periods dedicated to fasting and communal prayers, thus raising tension between science and religious beliefs; between scientists, public administrators, religious leaders and believers. The chapter examines the public perceptions of the outbreak using the accommodation of science by religion approach (Falade & Bauer, 2018; Moscovici, 2007). Reproductive health, traditions and beliefs section discusses female sexuality as a taboo in many parts of Africa and traditional and religious beliefs on the origins of reproductive health related diseases and deaths. The sociolinguistic functions of English and Chichewa in Gynaecological Consultations in a Chichewa speaking Hospital Setting in Malawi examines linguistic taboos about women bodies and sexuality which are believed to cause harm and discomfort. The author argues that in multilingual Malawi, this often leads to switching from one language to another in conversations in gynecological settings. The chapter examines what determines the choice of language between a lingua franca and the medical terminologies and between the local languages and English as well as the consequences these may have for doctor patient relationship and the basic goals of gynecological consultations. Evil spirits and martyrdom as perceptions of preeclampsia among traditional birth attendants in Kano, North-West Nigeria examines age old beliefs in culture about the nature and origin of changes to the body of pregnant women and prenatal death. Hypertension related Eclampsia in pregnancy is recognized as one of the leading causes of maternal deaths around the world, however, there are low levels of understanding of the science of the ailment and its link with maternal deaths in pregnant women among traditional birth attendants who still account for many deliveries in Kano. Traditional and religious beliefs about the condition as being normal and non-life threatening for pregnant women persists

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among the birth attendants, also in culture are beliefs they may have been caused by evil spirits and those who died are seen as having died for a worthy cause. The chapter argues for an urgent need to change the perceptions and beliefs of the traditional birth attendants who still play significant roles in the community. Mental health is very prevalent in Africa but rarely discussed even in academic literature. Focus has been on extreme cases which present as madness while those more difficult to diagnose are left unknown and without access to help. With this section we hope to open up the landscape and encourage more research in this field across Africa. Culture and Mental Healthcare Access in the Morrocan context services recognizes that Mental Health (MH) care is often the most neglected health sector across countries and in low and middle-income countries, the scarcity of resources causes immense treatment gaps, hampering accessibility to care for the population. The chapter examines how social dynamics in the Moroccan society, including norms, religious and health-related beliefs and attitudes, may influence Mental Health care access. Morocco is located in the Maghreb region of Africa which shares distinct cultural similarities that evolved from its history, ethnic diversity, political and economic ties. The chapter calls for the creation of spaces for culture and gender-based norms, which build up on community mental health competencies in interventions, so that services are more culturally acceptable and local communities engage in key action plans. Social Media Effects on Mental Behavior: A Study of Selfitis among Undergraduate Students of the University of Nigeria examines the debate over the description of “obsessive selfie taking” by psychologists as a mental health issue known as “selfitis” and counter arguments that since it is a border line issue, it has not assumed the status of a mental disorder. The chapter examines awareness of this phenomenon among students of a Nigerian university, its perception as a mental disorder, and factors that may be responsible for the obsession. Awareness and perception of selfitis as a mental disorder caused by excessive selfie taking was poor among the study participants and factors such as gaining social acceptance among peers, and the building of self-esteem were some of the reasons the students engaged in excessive selfie taking.

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Communities, western and indigenous communication section recognizes that several communities in Africa are poor, with low education and beyond the reach of western type communication approaches, thus, remain hotbeds of several communicable and non-communicable diseases. This has led to calls for a rethink of how we use modern systems such as radio, television and internet, which are beyond the reach of many, both physically and financially, and how to combine these with indigenous systems which already exist in culture and accessible to the rural communities. This section examines three major health issues: malaria, teenage pregnancy and HIV, and how a rethink about how we use modern-day systems and the fusion of indigenous and contemporary communication methods may lead to better outcomes. Collective Change through Mass Media: Engaging Adolescent Girls Through Interactive Radio to Promote AIDS-Free Communities in Kenya reports on some of the findings of a two year project on the reduction in HIV infection among adolescent girls in Sub-Saharan Africa. The project was situated in both rural and urban settlements in Kenya which have high HIV prevalence rates. It employed the use of vignettes in interactive radio sessions where participants were asked to respond about a third party rather than themselves, which allows them to project their views onto someone else, and thus more freedom than in the case of personal experiences. The collective beliefs and practices were discussed within the framework of the Theory of Social Representations. Combating malaria in Nigeria’s rural communities through indigenous communication strategies argues that complementing current health communication approaches with traditional communication strategies to reach the country’s largely rural public which account for the largest proportion of the total malaria burden may lead to better outcomes in the uptake of prevention strategies. It takes a bold step in proposing the use of folk tales, music and dance, community theater, women groups, elder’s council and town hall meetings which the rural public are more familiar and regularly engage with as complementary communication channels. The value of the Fusion of Indigenous and Contemporary Knowledge in Developing Communication as Interventions to Reduce Teenage Pregnancy in South Africa examines teenage pregnancy in South Africa, particularly in rural areas, where

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it is reportedly growing rapidly among school-going pupils. The paper argues that current communication interventions, many of which were informed by scholarly theoretical frameworks, global guidelines, national and regional strategies have neglected indigenous knowledge systems and resources that may have contextualized the interventions and encouraged its uptake by the public. The chapter explores the roles of indigenous knowledge systems and actors in combating teenage pregnancy using data collected from elderly women in the rural areas of Limpopo province in South Africa. It argues that interventions should consider young women’s experiences, behaviors and perceptions of their sexual and reproductive health and the larger contextual factors such as poverty, loss of family structure and the cultural and societal norms governing the role expected of young women.

References Bacchi, C. (2012). Why study problematizations? Making politics visible. Open Journal of Political Science, 2, 1–8. Bacchi, C. (2018). Drug problematizations and politics: Deploying a poststructural analytic strategy. Contemporary Drug Problems, 45 (1), 3–14. Berger, P. L., & Luckmann, T. (1966). The social construction of reality: A treatise in the sociology of knowledge (Vol. 10, pp. 70–71). Penguin. Campbell, C., Nair, Y., Maimane, S., & Nicholson, J. (2007). “Dying twice”: A multi-level model of the roots of AIDS stigma in two South African communities. Journal of Health Psychology, 12(3), 403–416. https://doi.org/ 10.1177/1359105307076229 Campbell, C. (2020). Social capital, social movements and global public health: Fighting for health-enabling contexts in marginalised settings. Social Science & Medicine, 112153. Crotty, Michael J. (1998/1976). Describing Freire in foundations of social research: Meaning and perspective in the research process (pp. 155–156). Sage. ISBN 0–7619–6106–2. Goffman, E. (2009). Stigma: Notes on the management of spoiled identity. Simon and Schuster.

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Goulet, D. (1974/2005) Introduction. In P. Freire (Ed.), Education for critical consciousness. Continuum. Falade, B. A. (2020). We treat, God heals’: COVID—19, religious institutions and the accommodation of science in Africa. Available from https://blogs.lse. ac.uk/religionglobalsociety/2020/04/we-treat-god-heals-covid-19-religiousinstitutions-and-the-accommodation-of-science-in-africa/ Accessed 6 May 2020. Falade, B. A., & Bauer, M. W. (2018). ‘I have faith in science and in God’: Common sense, cognitive polyphasia and attitudes to science in Nigeria. Public Understanding of Science, 27 (1), 29–46. Foucault, M. (1972). The Archaeology of knowledge. London: Tavistock. Foucault, M. (1984). Polemics, politics and problematizations, based on an interview conducted by Paul Rabinow. In L. Davis (Trans.), Essential works of Foucault (Vol. 1), Ethics. New York: New Press. Foucault, M. (1988). The concern for truth. In L. D. Kritzman (Ed.), A. Sheridan (Trans.), Michel Foucault: Politics, philosophy, culture. Interviews and other writings, 1977–1984 (pp. 255–267). Routledge. Frederiksen, K., Lomborg, K., & Beedholm, K. (2015). Foucault’s notion of problematization: A methodological discussion of the application of Foucault’s later work to nursing research. Nursing Inquiry, 22(3), 202–209. Freire, P. (1974). Conscientisation. CrossCurrents, 24 (1), 23–31. Freire, P. (1974/2005). Education for critical consciousness. Continuum Gregoric, P. (2007). Aristotle on the common sense. Oxford University Press. Locke, J. (1860). An essay concerning human understanding: and a treatise on the conduct of the understanding. Complete in one volume with the author’s last additions and corrections. Hayes & Zell. Paine, T. (1776). Common sense. Dover publications. Perring, R. (2020). Coronavirus: Historic moment as Kaaba CLOSED— Emergency deep-clean at Islam’s holy site. Express Newspaper online. Available at https://www.express.co.uk/news/world/1251324/coronavirusnews-Kaaba-closed-mecca-Saudi-arabia-coronavirus-latest-updates-greatmosque. Accessed 6 May 2020. Rocca, F. X. (2020). As Christians mark Easter in isolation, Pope Francis proclaims ‘Contagion of Hope’. The Wall Street Journal . Available at https://www.wsj.com/articles/as-christians-mark-easter-in-isolation-popefrancis-proclaims-contagion-of-hope-11586691839. Accessed 6 May 2020. Slovic, P., Finucane, M. L., Peters, E., & MacGregor, D. G. (2004). Risk as analysis and risk as feelings: Some thoughts about affect, reason, risk and rationality. Risk Analysis, 24 (2), 311–322.

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Starr, C. (1969). Social benefit versus technological risk. Science, 1232–1238. Vallgårda, S. (2007). Health inequalities: Political problematizations in Denmark and Sweden. Critical Public Health, 17 (1), 45–56. Wagner, W., & Hayes, N. (2005). Everyday discourse and common sense: The theory of social representations. Palgrave Macmillan. WHO. (2019a). HIV/AIDS, key facts. Available at https://www.who.int/newsroom/fact-sheets/detail/hiv-aids. Accessed 5 May 2020. WHO. (2019b). Africa, Health topics, HIV/AIDS. Available at https://www. afro.who.int/health-topics/hivaids. Accessed 5 May 2020. WHO. (2019c). Europe: Health topics, communicable diseases, HIV/AIDS. Available at http://www.euro.who.int/en/health-topics/communicable-diseases/ hivaids/hivaids. Assessed 5 May 2020. WHO. (2019d). Global health observatory data: Malaria. Available at https:// www.who.int/gho/malaria/en/. Accessed 5 May 2020. WHO. (2019e). The top 10 causes of death. Available at https://www.who.int/ news-room/fact-sheets/detail/the-top-10-causes-of-death. Accessed 5 May 2020. WHO. (2019f ). Africa: Health topics, Tuberculosis. Available at https://www. afro.who.int/health-topics/tuberculosis-tb. Assessed 5 May 2020. WHO. (2020). Regional HIV and AIDS statistics and features. E-mail, 5 May 2020. Winch, S. (2005). Ethics, government and sexual health: Insights from Foucault. Nursing Ethics, 12(2), 177–186.

Part II Conceptual Approaches

2 Health Beliefs and Communication: Conceptual Approaches Bankole Falade

Case Study 1 Informant C: Yah, it will worry a guy if a girl carries a lot of condoms … It means am not alone in having sex with her. (Man, 21–25). Informant D: If a boy wants to use a condom, a girl will say this is because he disrespects her – because he wants to use ‘a plastic’. (Girl, 13–16). Informant E: I won’t go to the clinics. The nurses shout at you … What are you doing with condoms? Do you have a boyfriend? I am going to tell your mother? (Woman, 21–25). • Campbell, C. (2003)

B. Falade (B) Stellenbosch University, Stellenbosch, South Africa e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_2

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Case Study 2 Some Nigerians did not believe that bats transmit the Ebola virus as they had hunted them for generations for their meat. Hunting bats was in some cultures a requirement to “move up” an age group. Bassonians like other Kwa-speaking groups, including Kru and Grebo, are known for spending time on mats to mourn their dead ones. They are also known for washing dead bodies as part of traditional rites. • Falade and Coultas (2017)

Is condom use about promiscuity or protection? A morality or safety issue? Should young people have sex? Should young women be seen collecting condoms at the health clinics? Should a woman carry a male condom with her? Should a man use a condom when having sex with his partner? In many parts of Africa, sex remains a moral issue and for adults only with HIV/AIDS among adolescents seen as declining moral standards and the failure of parenting (Helleve et al., 2009). Condom use has also been associated with promiscuity (Larson, 1989; Pool et al., 1996; Rwabukwali et al., 1994) and carrying a condom viewed as a sign of mistrust and risky sexual encounters. Some of these perspectives predate HIV/AIDS, but as common sense practices entrenched in culture, which are often resistant to change, they have become obstacles to its prevention. Beliefs and traditions also created obstacles to early containment during the Ebola crisis in West Africa. Relatives of some ethnic groups in the region wash the corpses of loved ones as traditional rites and this contributed to spreading the disease by providing new hosts for the deadly virus (Falade & Coultas, 2017; Manguvo & Mafuvadze, 2015). The belief in the efficacy of prayers and other African religious practices also contribute to the spread of diseases on the continent. Religion, as seen in the case of Ebola in West Africa, can however be two-edged, with some practices contributing to the spread of disease while others support health systems for its containment (Falade & Coultas, 2017; Marshall & Smith, 2015). Norms, traditions and beliefs that constitute the common sense of a social group in a geographical space sometimes constitute obstacles

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to health communication. Eradication of diseases thus, in many cases, require a change of habits, a modification of collective behaviours. This chapter introduces conceptual approaches to health communication and behavioural change. It briefly describes approaches in social and public communication, risk perception, theories and models of health behaviours and channel effects.

The Message, Messenger and Meaning The process and semiotic schools: Fiske (1990, pp. 2–3) identified two main schools in the study of communication. The process school sees communication as the transmission of messages and is primarily concerned with how senders and receivers encode and decode while the semiotic approach is about the production and exchange of meaning, how messages interact in culture to produce meanings. For the process school (Shannon & Weaver, 1949), the message is what the sender puts into it, stated or unstated, conscious or unconscious. For this command approach, speech should create the desired effect, problem is how to improve efficiency and accuracy: reduce “noise”. Weaver (1953) argues that problems can arise at three levels: technical, semantic and effectiveness. Technical is about accuracy of transference from sender to receiver; semantic is concerned with close approximation in interpretation of meaning by the receiver while effectiveness is the success to which the meaning conveyed to the receiver leads to the desired conduct of the receiver. The semiotic school (see Peirce, 1931; Ferdinand de Saussure, 1974), sees the message as constructions of signs, which through interaction with the receivers, produce meanings and the emphasis is on how the reader (receiver) negotiates with the text. Semiotics primarily focuses on the text and the status of the receiver as both are seen to play more active roles than the process school. They make no distinction between the encoder and decoder and the reader is seen as creating meaning by bringing to the text his experience, attitudes and emotions (Fiske, 1990, pp. 39–42). Thus, while the process school sees the message as essentially the “text”, the semiotic school argues that people use cultural experiences,

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attitudes, emotions to interpret the text and the same message may have different interpretations in different cultures and situations. Speech Acts: John Austin (1962), in his seminal book, “How to do things with words” argues that a speech (see Case study 2 below) can be broken into locutionary, illocutionary and perlocutionary acts. Simplified, locutionary is the “utterance” of some words or sound by the speaker (there is a new condom, which is called MAX condom); illocutionary is the intention of the speaker in utterance (to get the public to use the condoms) and perlocutionary is the intended effect the speaker desires in his audience (public will embrace condoms use to contain the spread of HIV). For Searle (1969, 1979) there are five illocutionary points speakers can archive in an utterance: assertive, commissive, directive, declaratory and expressive. Speakers achieve the assertive point when they represent how things are in the world: the commissive when they commit themselves to doing something; the directive when they make an attempt to get hearers to do something; the declaratory when they do things at the moment of the utterance solely by saying that they do and the expressive is when they express their attitudes about objects and facts of the world (see Vanderveken & Kubo, 2002, p. 5). The Speech Act, like the transmission model, also follows the command structure, illocutionary act should elicit the desired effect on the hearer. Case Study 2 Use a condom Ramaphosa: The minister of health was able, a few months ago, to launch a new condom and I brought some examples here (holds up two different colours with both hands). A new condom, which is called MAX condom. The MAX condom is in response to what a number of people were saying … they were saying that the other condom that had been introduced by government did not smell so well and it made a noise whenever it was used, now through scientific development, we were able to develop a new condom, which is called MAX. The MAX is for maximum pleasure, maximum protection and it does not make noise at all.

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• What was the communicative intention in the above speech on the floor of the South African Parliament in 2016 by then Deputy President, Cyril Ramaphosa (https://youtu.be/2DvcTTx_LMM).

Habermas and communicative action: Habermas advances Austin and Searle to a theory of communicative action (see Habermas, 2015), arguing that perlocutionary act is attained only when the object of communication considers the illocutionary act to be valid. In any Speech Act, the speaker raises claims to truth, rightness and intensions (or sincerity) and a hearer may reject the message because any or all of these are invalid. The constraints to communication will therefore be intelligibility, truth (parties accept the object exists), trustworthiness and legitimacy (mutually accepted values and norms). For Jovchelovitch (2011, p. 137), meaning cannot be separated from validity and to understand the meaning of an utterance it is necessary to understand its validity in relation to the language, culture and the communicative context. Central to this philosophy, which Habermas claims to be universal, is the distinction between strategic action where the participants strive after their own private goals and communicative action, when the participants are oriented towards mutual agreement. The condition for successful communicative action then is that participants achieve a mutual understanding of the situation in which they find themselves (see Dietz & Widdershoven, 1991). Communicative action, oriented towards reaching understanding, is the inherent telos of human speech while strategic action, which is oriented towards success, suspends validity claims and distorts communication (Jovchelovitch, 2011, p. 145). Luhmann’s communication system: Habermas was concerned with setting conditions, which if fulfilled, will lead to a successful performance of the perlocutionary act envisaged by the illocutionary act of the speaker. Luhmann (1986, p. 6), however, disagrees with Habermas, arguing that understanding is not part of the activity of the communicator and cannot be attributed to him. For Luhmann, communication requires a

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synthesis of information, utterance and understanding (including misunderstanding) which is produced by the communication system and not by an inherent power of consciousness or the quality of the information. Information, utterance and understanding, Luhmann argues are co-created and cannot exist independently of the system (pp. 12–13), and in the case of serious problems of understanding and apparent misunderstandings, social systems very often tend to avoid the burden of argumentation and reasoned discourse to reach a consensus, instead, they tend to push the matter into rejection and to embark on the easy vessel of conflict (1986, p. 14). Understanding, Luhmann (2000, p. 40) argues, occurs whenever the utterance of an information is understood, but this may result in acceptance or rejection, consensus or dissent. The major issue in communication, for Luhmann (1981), is how to create an order that surmounts three social problems. The first is that given the nature of human consciousness, one person can understand what the other means. The second is about reaching recipients who are not present in a given situation, separated in space and time and commanding their attention. The third is that even if the communication is understood, there is no assurance of it being accepted as premise for behaviour. Luhmann (1981) argues that since the three types mutually reinforce each other and solutions to problems in one respect limit possibilities in other respects, there is no direct way of achieving a progressive improvement in mutual understanding. Rhetoric: Ramaphosa’s speech to the South Africa parliament (Case study 2) has all the elements of classical rhetorical traditions, the art of persuasion in a public assembly. Rhetoric (Bauer & Glaveanu, 2011) represents an ancient art of discourse whose origins can be traced to the fifth century and has been seen at different times in history as the art of deception and manipulation of an ignorant public or the art of public reasoning and a heuristic of finding the best means of persuasion, among others. A rhetorical situation has been described as the optimal path to construct arguments that fit the problem at hand and to accomplish their delivery at the right time by a speaker with specific strengths in relation to a particular audience (see Bitzer, 1992). Aristotle argues that rhetoric is not only useful for those who want to outwit their audience and conceal

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their real aims (see strategic action above), those who want to communicate the truth and establish what is just (see communicative action) also need rhetoric, when faced with a public audience (Rapp, 2010). For Aristotle, a speech consists of the speaker, the subject in discourse and the listener leaving only three technical means of persuasion: the character of the speaker, the emotional state of the hearer and the argument (logos) itself. Also, since public speeches are not about exact knowledge and the audience can be easily distracted and are sometimes receptive to flattery, affecting the decisions of juries and assemblies is a matter of persuasiveness offered by rhetoric (Rapp, 2010). The goal of persuasion is archived when the speaker is seen to be trustworthy or credible (ethos), he successfully appeals to the emotions of the audience (pathos) and he presents a speech with persuasive argument (logos). Ethos, logos and pathos are the “three musketeers of rhetoric” (Bauer & Glaveanu, 2011). Social representations: Luhmann proposed binary choices, acceptance or rejection. Moscovici proposed a third alternative, accommodation, in his “social representations” approach. For Moscovici (1984), meaning evolves from the images, ideas and languages shared by a group and his study of the reception of psychoanalysis in France in the 50’s Moscovici (2008) he found that three subcultures of the society; the communists, the Catholics and the urban elite appropriated the idea differently. For the communist-controlled press, the strategy was propaganda seeking to enforce a “rejection” of psychoanalysis as an instrument of western imperialism. The Catholic press adopted the strategy of “accommodation”, for the church, while the theory and practice derived from psychoanalysis are dangerous, spiritual advisers can work together with therapists while the church must adopt its concrete findings. The newspapers for the urban elite adopted the strategy of “acceptance”. Social representations (Moscovici & Vignaux, 2000), inscribed within the framework of pre-existing thought (Case study 3 below), play a triple role of illumination (giving sense to realities); integration (incorporating new ideas or facts into familiar frameworks) and partition (ensuring the common sense through which a given collectivity is recognized). For Breakwell (1993), social representations are public rhetoric used by

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groups to engender cohesiveness and manoeuvre relative to other groups and also serve as cognitive structures which function to facilitate communication between members of a collective because of their shared or consensual form. Moscovici’s theory of acceptance, rejection or accommodation expands Habermas’ philosophy of conditional acceptance and Luhmann’s theory of acceptance or rejection. Case study 3 The three representations of madness 1. 1.The patients are made of flesh and bones like us. 2. 2.They aren’t able to be like us. They aren’t able to take responsibility for themselves. 3. They are tough cases. They are not at all weak, although they might look like it. • Jodelet, D. (1991). Madness and social representations: Living with the mad in on French Community (Vol. 5, p. 172). University of California Press.

Diffusion of innovations in health: Diffusion, as a process of communicating new ideas among participants through certain channels over time, is essentially a change process which seeks to alter the structure and functions of a social system through mutual understanding (Rogers, 1983/2010). This approach, Rogers argues, implies that communication is a process of convergence (or divergence) as two or more individuals exchange information in order to move towards each other (or apart) in the meanings that they ascribe to certain events. The same innovation may be desirable in one situation or social system but undesirable in another leading to either adoption or rejection (see Habermas and Luhmann above). The decision to adopt or reject can also be reversed at a later point. Dependent on time is the innovation decision process (time from first knowledge to implementation of new idea), the innovativeness of individual or unit (innovators, early adopters, early majority,

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late majority and laggards) and the rate of adoption or speed the innovation is adopted by the society. Other issues critical to adoption are the social and communication structure and the norms or established behaviour patterns of the society. Norms restrict condom use and eating bats contribute to the spread of disease (Case study 1). Rogers (1983) shows how superstitious beliefs that baby diarrhoea is caused by evil spirits (p. 102) instead of hygiene, became a stumbling block to public health campaigns to promote breastfeeding as a healthier practice than bottle-feeding in developing countries in Latin America, Africa, and Asia. Risk perception: Risk means different things to different people (Slovic, 1987) and riskiness means more than the expected number of fatalities. An ordering of perceived risks for 30 activities shows that college students perceive higher risk from contraceptives than experts while women voters and club members see much lower risks. The same trend applies to food preservatives. However, experts perceive x-rays as of much higher risks than college students and all social groups see smoking as a more risky activity than contraceptives, X-rays or food preservatives. How people perceive risk thus evolves from scientific knowledge and the images and ideas shared by a group (see Moscovici, above). Slovic argues that disagreements about riskiness should not be expected to evaporate in the presence of evidence. Strong initial views are resistant to change because they influence the way that subsequent information is interpreted and new evidence appears reliable and informative if it is consistent with one’s initial beliefs (Slovic, 1987). Slovic et al. (2004) argue that readily-available affective impressions can be easier and more efficient than weighing the pros and cons, especially when the required decision is complex or mental resources are needed. This position agrees Luhmann (1986) above that people very often tend to avoid the burden of argumentation and reasoned discourse to reach a consensus. Slovic et al., separate risk perception into two systems: the analytical, which uses algorithms and normative rules favoured by experts and the experiential, which relies on images and associations linked by experience to emotion and affect (Case study 5) and used mainly by non-experts.

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Case Study 5 We live for dying Informant A: Each time you go underground, you have to wear a lamp on your head. Once you take on that lamp, you know you are wearing death … we live for dying! Informant B: The dangers and risks of the job … the only thing that motivates us is pleasure *The Summertown, South Africa project “Letting them die”: Why HIV/AIDS prevention programmes fail (Campbell, 2003)

Public understanding of science: The risk perception perspective above, with its focus on risk assessment and management, resonated more with engineers, the public understanding of science paradigm, with is focus on literacy, public opinion, understanding and attitudes, was more favoured by scientists, both are however, functionally equivalent (see Geoffrey & Durant, 1987; Durant et al., 1992; Bauer et al., 1994; Miller, 1998; Bauer, 2014). A focus on the link between science literacy and understanding, described as “the more you know science, the more you love it”, however, Gregory (2001) argues, ignores research findings that the more knowledge people have, the more critical they become about an issue and the more polarized their attitude becomes. Gregory’s position agrees with Luhmann (1981) that the better one’s understanding of a communication, the more grounds one has to reject it. The research focus has also been called the “cognitive deficit model” for a tendency to juxtapose scientists with irrational lay people. Sturgis and Allum (2004) defended the literacy-understanding link arguing that there is no reason to assume scientific knowledge does not have an additional and independent effect if risk perception, economic factors, culture etc. influence attitudes. Einsiedel (2000) citing HIV/AIDS, argues that the public can at times be ignorant and the identification of the levels and nature of public knowledge became a critical first step in public education. Allum et al. (2008) also found that people who are more scientifically literate have a more positive attitude to science in general, but not necessarily about specific technologies. Bauer et al. (1994) proposes that the link between survey research protocol and the deficit model be severed and

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the concept of PUS be seen on the one hand as an activity that comprises practical efforts to popularize science, and on the other hand as a field for research and reflection on such activities and their intended and unintended effect.

Mainstream and Critical Health Psychology Approaches Early models of health behaviour were individual-centred but the shortcomings of these paradigms led to the rise of ecological and broader models that link health plans, communities, clinicians and public health practitioners (Orleans, 2008). Crossley (2000) split approaches into two: the traditional mainstream and the more recent critical health psychology approaches. The mainstream approaches emerged from a biopsychosocial critique of an earlier biomedical model which saw disease narrowly as physical changes to the body requiring physical interventions. The main criticism of the biopsychosocial model by the critical theorists is that it still fails to address social justice, self-determination, health and human diversity, among others. Methodologically, the critical psychology approach identifies with the phenomenological-discursive model, qualitative methods, meaning, morality, experiences and context while the mainstream approaches adopt quantitative methods, a focus on health and unhealthy behaviours, beliefs, prediction and prevention (Crossley, 2000, p. 8). The most commonly used models include the Health Belief Model (HBM), Protection Motivation theory (PMT), Social Learning Theory (SLT), Social Cognition model (SCM), Theory of Reasoned Action (TRA), Theory of Planned Bahaviour (TPB), Nudge Theory and Ecological Models/Social Ecology (see Gerend & Shepherd, 2012; Glanz, et al., 2008; Nejad et al., 2005; Chang, 1998; Madden et al., 1992). Health belief Model (HBM): HMB was developed by social psychologists in the 1950s (see Rosenstock, 1974) when the focus of public health was the participation in programs to prevent and detect disease and the model followed Kurt Lewin’s concept that an individual exists

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in a life space composed of regions which were positively valued (positive valence), negatively valued (negative valence) or neutral (see Maiman & Becker, 1974). The HBM was later extended to people’s responses to symptoms and also to behaviours in response to diagnosed illness (Champion & Skinner, 2008). The HBM contains several primary concepts that predict why people will take action to prevent, to screen for, or to control illness conditions and include perceived susceptibility, perceived severity, perceived benefits, perceived barriers (costs), cues to action, self-efficacy and others such as demographic, socio psychological and structural variables (Champion & Skinner, 2008; Gerend & Shepherd, 2012). A review of HBM studies (Champion & Skinner, 2008) shows that perceived barriers were the most powerful predictors across all studies and behaviours. Protection Motivation Theory: The Protection motivation theory (PMT) was proposed by Rogers (1975) as a framework for understanding the cognitive and psychological processes in fear appeals and attitude change. Rogers postulated the three crucial components of a fear appeal to be (a) the magnitude of noxiousness of a depicted event; (b) the probability of that event’s occurrence; and (c) the efficacy of a protective response. A revision of PMT (Rogers 1983) extended the theory to provide a more general account of the impact of persuasive communications, with an emphasis on the cognitive processes that mediate behaviour change (Norman et al., 2005). Rogers (1983) proposed that various sources of information can initiate two appraisal processes: threat appraisal and coping appraisal. These cognitive processes, he argues, appraise the maladaptive (or adaptive response) and the variables increasing or decreasing the probability of the occurrence of the response. Protection motivation results in single act, repeated acts, multiple acts or repeated multiple acts. For PMT to be elicited, Norman, et al. argue, perceptions of severity and vulnerability should outweigh the rewards associated with maladaptive responses and perceptions of response efficacy and self-efficacy should outweigh the response costs of the adaptive behaviour. Neuwirth et al., (2000) provide evidence supporting the impact of risk communication on protection motivation.

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Theory of Reasoned Action (TRA)/Planned Behaviour (TPB): The Theory of Reasoned Action (Ajzen & Fishbein, 1980, 2004) was developed to better understand relationships between attitudes, intentions and behaviours. The authors distinguished between attitude towards an object (such as an attitude towards cancer) and attitude towards a behaviour with respect to that object (for example, attitude towards mammography). Fishbein and Ajzen demonstrated that attitude towards the behaviour (mammography) is a much better predictor of that behaviour (obtaining mammography) than attitude towards the object (cancer) at which the behaviour is directed. The Theory of Planned Behaviour, an extension of the TRA proposed by Ajzen (1985), adds perceived control over the behaviour, taking into account situations where one may not have complete volitional control over a behaviour, performance is thus determined jointly by motivation and ability (see also Ajzen, 1991). Explaining the conceptual background of the model, Montano and Kasprzyk (2015) argues that attitude is determined by the individual’s beliefs about outcomes weighted by evaluations of those outcomes and the individual’s subjective norm is determined by his or her normative beliefs. Both TRA and TPB have in recent years moved towards the use of Integrated Behavioral Models (Montano & Kasprzyk, 2015). Gerend and Shepherd’s findings on TPB and TRA highlighted the importance of proximal versus distal predictors of health behaviour. Slater (1999) argues that the theories should be seen as complementary not competing because their foci and boundary conditions make them useful in different situations. Nudge theory: The “nudge” approach was proposed by Richard Thaler and Cass Sunstein (2008) in their book, Nudge: Improving decisions about Health, Wealth, and Happiness and has since gained international application in health research and interventions. The authors contend that there exists a “choice architecture” which involves all of the outside forces that may subtly guide one’s decisions in one direction or another and a “choice architect” who designs the environment in order to make a certain option more likely to be chosen (see Arno & Thomas, 2016). The nudge approach is to stimulate healthier behavioural outcomes by subtly influencing the choice environment while also retaining the individual, or groups, freedom of choice. For

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example, healthier food items placed at eye level in a supermarket may be selected more frequently than the less healthy ones placed near the floor. Arno and Thomas’s study found that nudges resulted in an average 15.3% increase in healthier dietary or nutritional choices, as measured by a change in frequency of healthy choices or a change in overall caloric consumption. Saghai (2013) however raises the issue of ethics, arguing that some health-affecting choices are so fundamental they ought to benefit from a strong presumption in their favour and be as fully noncontrolled by others as possible. The non-control that nudges guarantee, he argues, may sometimes not be sufficiently protective of those liberties (eg, certain end-of-life and reproductive choices). Community Health Psychology: Community health psychology focuses on the processes of collective action through which communities collectively identity the impacts of oppressive social relations on their wellbeing and engage in social struggles to create more health enabling environments (Campbell & Cornish, 2013). Community health psychologists are broadly divided into two groups. The first focuses on academic and professional psychology and health damaging social relations while the second looks at social inequality in contexts beyond the academy, focusing also on the role marginalized groups, community health psychologists and others can play in tackling these problems. The first group are critical of research which sustains rather than challenge the dominant classes in unjust societies (see Campbell & Burgess, 2012) and approaches which see the individual as distinct from the social (individual-social binary), a concept which fails to capture the social nature of personhood and masks the social rootedness of ill health. The second group takes a step further with a commitment to the construction of psychological knowledge and practice that aims to be emancipatory and transformative of health-damaging social relations. The second group contributes to wider acts of activism guided by Paulo Freire’s reflection-action cycle, a process whereby external change agents work with marginalized groups for new understandings of health and social inequalities (see Campbell, 2014). Campbell and Cornish argue that the fields’ engagement with local and global inequalities, contemporary forms of collective social protest deepen our understandings of power, identity, community, knowledge and social change in

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the context of the evolving understandings of the spatial, embodied, relational, collaborative and historical dimensions of health.

Channels, Channel Effect and Meaning Communication channels: The media remain the channels for disseminating new ideas to the public, including those quite distant from where the message originated. The media “transmit” new knowledge to the pre-existing “pictures we have in our heads” (Lipmann, 1922; Freire, 1970) in context (Jovchelovitch, 2007). The pre-existing knowledge, beliefs, values, motivations, perceived constraints and other psychosocial and economic factors are critical to the interpretation of the message (Moscovici, 2008; Freire, 1970; Slater, 1999) as no individual is an empty vessel (Freire, 1970). Is the transmitted message, perceived by listeners, present and remote, to Ramaphosa’s message (above), the same as that intended by the speaker? Does it command the right attention and elicit the required behavioural change? Shannon and Weaver (1949) argues that in the process of transmitting the message, “noise” is added which may introduce “distortions”, thus the message received is not exactly the same as that sent out. Luhmann (1981, above) also argues that even if communication is conveyed, it is not guaranteed to command the needed attention, be understood and even if understood, find acceptance. Gerbner (1956, in Fiske, 1990, p. 24) argues that perception is not a simple reception of the message in whatever form, but a process of negotiation as the recipient matches the external stimuli with internal patterns of thought or concepts. Perception, then, is culture guided and meaning is not “contained” in the message, but evolves as a result of a negotiation between the receiver and the message. The message thus has a potential for varied meanings in different cultures or contexts. Channel effects: Given these constraints to communication and behavioural change, what effects do the media have in changing the old pictures in our heads? What effects do they have on social change, on public opinion about issues and events? Strong or weak effects? For

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McQuail (1994) the entire industry of mass communication is predicated on the assumption that the media has significant effects on the public perception. The strong effect hypothesis is exemplified by Edward Bernays (1928, 1947), who argued that public opinion, the thought of a society at a given time towards a given object, can be manipulated (or engineered) to gain acceptance of new habits or objects. Bernays argues however that this is dependent on the correct “problematisation” and “context”. Bernays argues that new socially sound ideas, like a campaign against tuberculosis or cancer, are constantly striving for a place in society and public opinion, which is slow and reactionary, does not easily accept them, hence a need for the manipulation of public opinion in favour of new ideas. The strong effect hypothesis has been criticized for seeing the public as ignorant and stupid—a bewildered herd. The strong media effect hypothesis was succeeded by a period when personal influence was considered to be the main influence on attitude change and the media only reinforced existing attitudes with the present stage characterized by “social constructivism” which combines elements of both strong and limited media effects (Scheufele, 1999). Channel effect versus meaning: Communication as transmission raises the issue of effect rather than meaning, effect being the observable and measurable change in the receiver caused by identifiable elements in the process. Changing one of the elements (encoder, message or channel) will change the effect and this linear model has been the focus of many mass communication research (Fiske, 1990). Gerbner (1956, in Fiske, 1990) however separates what is transmitted through the channel from the meaning given to the message by the receiver, arguing the human perception is not just about reception but a process, controlled by culture, of matching the external stimuli with pre-existing thoughts. Also for Gamson and Modigliani (1989) the public use media messages to construct meaning. With the agenda-setting theory (McCombs & Shaw, 1972), more media coverage (e.g. HIV/AIDS and Anti-Retroviral Therapy) should transfer issue salience from media to the public. Marzur and Lee’s (1993) quantity of coverage theory proposes that as the quantity of stories increases, so do public concern (and opposition to risky technologies) and as the quantity decreases, so do audience worries. Both agenda

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setting and quantity of coverage hypothesize a link between coverage and public opinion. Gerbner’s (1969) cultivation analysis sees the media as cultivating common perspectives. Riffe et al. (1998) argue that the audience mostly reject what is inconsistent with their existing attitudes, beliefs, and values, in effect what is incompatible with common sense. Riffe et al. and Gerbner deliberate on the resistance culture may pose to the spread of new knowledge, in this case, about disease. Coverage also stimulates discussion between family, friends, colleagues and neigbours and this is likely to influence social norms and behaviour (Chaffee & Mutz, 1988). McQuail (2005) proposed a typology of media effects on two dimensions: time and intentionality. He located all media effects research on a two-dimensional plane on which are spread a series of hypothesis such as propaganda, agenda setting, framing, policy effects, diffusion of innovation, social control and social integration. The results of these efforts to pin down media effects on audiences however remain inconclusive, in particular with the direction of causality (Bauer, 2005). Joffe and Haarhoff (2002) found that while newspapers made the threat of Ebola real in the UK, by emphasizing its potential to globalize as well as how it can be contained, lay thinkers felt detached from it and saw it as science fiction. Entman and Rojecki (1993) also showed that while Gallop polls showed public opinion in favour of the anti-freeze remained high, with support increasing from 71 to 78% between 1983 and 1984, the media had implicitly declared it dead.

Rumours and Conspiracy Theories and Health Communication The Tuskegee (Brandon et al., 2005) and human radiation experiments (Fanden, 1996) have trailed public health issues for several decades. Issues with drug trials have eroded trust and created negative stereotypes about global health interventions (see Lenzer, 2011). Rumours and conspiracy theories continue to feature in health interventions, not just in Africa, confirming theoretical perspectives that they do not arise in a vacuum but originate from issues, events and preconceptions about people.

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Rumours thrive in periods of social duress, arising to express fears, suspicion, wishes and hostilities and spring from attempts to make sense of change or novelty (see Rosnow, 1988; Knoff, 1975; Knapp, 1944). A case in recent times is the several rumours that have spread about the origin of COVID 19, including a link with new developments in mobile telecommunications, the 5G, in what can be described as tying together of errant data (Keely, 1999) but has led to the destruction of telephone mast across the world in a conspiracy theory induced fear (Ahmed et al., 2020; Jolley & Paterson, 2020). Thus, they align with Moscovici’s arguments that the initial direction people will look at the unfamiliar, at change or novelty, will be from or “pre-existing thoughts” and also shows that in conversations, nothing is completely forbidden, nothing is really deviant (Moscovici & Vignaux, 2000; Moscovici, 2008). Rumours are mediated by personal anxiety, general uncertainty and often provide the proof necessary for mass mobilization (Knoff, 1975) as seen with the Tetanus Toxoid controversy in Cameroun (Feldman-Savelsberg et al., 2000) and the Ebola virus disease crisis in West Africa (Falade & Coultas, 2017).

Summary The sufficiency of the science in the speech act to elicit the desired perlocutionary outcomes is not a given. Issues have been raised about noise in the transmission process, filtering by the media of communication and the pre-existing thoughts of the agent or group which have significant influence on the meaning of the message. For Habermas, communication for mutual understanding cannot be separated from the validity of speaker’s claims to truth, rightness and intensions. Luhmann disagrees, however, arguing that understanding cannot be attributed to the communicator as communication requires a synthesis of information, utterance and understanding (including misunderstanding) produced by the communication system. Validity of claims thus remains open to acceptance or rejection by the recipient. For Moscovici, apart from acceptance or rejection, recipients or social groups,

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influenced largely by cultural norms, can accommodate the new knowledge, a midway between outright rejection and acceptance. Diffusion studies also indicate that a message once accepted can later be rejected. Behavioural models have made significant contributions to understanding public health interventions and the community health approach takes a step further to embrace emancipatory and transformative activism in tackling local and global inequalities and other health-damaging social relations by calling for a rethink of the relations of power, identity, community and knowledge in the context of the special, embodied, relational, collaborative and historical dimensions of health.

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3 Understanding Community Development Approaches in Health Mercy Murire

In this chapter, the concepts of social identity, empowerment, critical consciousness, social capital, power and social change are discussed. These concepts provide a helpful starting point for our interest in addressing the relative lack of social-psychological attention to community-level determinants of health in understandings and responses to health programmes, particularly, HIV prevention and AIDS in Africa. Many authors have argued that it is only through the participation of grassroots communities in planning and implementing health programmes that HIV interventions and policies are likely to have an impact (Campbell et al., 2013; Nhamo-Murire et al., 2014; UNAIDS & Stop AIDS Alliance, 2015). Dube and Wilson (1999) argue that local community groups should involve participants in designing and implementing grassroots initiatives to promote healthy behaviours, because people are more likely to change their behaviour if they see that liked and M. Murire (B) Wits Reproductive Health Institute, Witwatersrand University, Johannesburg, South Africa © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_3

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trusted peers are changing theirs (Campbell & Cornish, 2010). Within the public health discourse, there is a growing recognition of the influence of local community conditions on health. Many studies (Aveling & Jovchelovitch, 2014; Campbell et al., 2013) emphasise that social cohesion and strong local networks benefit health in a range of indirect ways. Below is a discussion on the nexus of social capital and health.

Social Capital The concept of social capital was first defined by Pierre Bourdieu as the aggregate of the actual or potential resources which are linked to a durable network of institutionalised relationships of mutual recognition (Bourdieu, 1986; Portes, 2009). Some authors such as Kawachi, Putnam and Coleman further developed the concept in more detail. Putnam defines social capital as the classification of networks, norms and trust relationships that enable communities to address common concerns. Kawachi discusses social capital in terms of both norms (trust, reciprocity) and networks (organisational memberships) (Kawachi et al., 2008). Coleman (1988) uses an economic model to define social capital as the set of resources that inhere in family relations and community organisations that are useful for the development of children. Putnam and Coleman focus mostly on the amount of social connectedness rather than a detailed analysis of the nature of any past or present connections (Arneil, 2006). Social capital is considered to have a ‘network’ dimension (high levels of participation in community groups) and a ‘norm’ dimension (particularly, levels of trust and reciprocity among community members) (Kawachi, 2006). The network aspect is generally considered to be a more powerful marker of social capital (Foley & Edwards, 1999), and here taking into consideration the African context, I define social capital in terms of peoples’ participation in local community groups. It is through group membership that Campbell et al. (2007) argues communities are most likely to become HIV competent. Campbell defines HIV competence in terms of the ability of a community to work collectively to negotiate new behavioural norms (around prevention, care and treatment) and transforming stigmatising attitudes.

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The social capital approach within the community health field posits that people are more likely to undergo health-enhancing behaviour change if they live in communities that offer high levels of participation in local networks and organisations. These networks are associated with trust, reciprocal help and support and positive local community identity (Gillies, 1998). Health programmes in this case HIV prevention programmes need to create healthy enabling social contexts. This refers to communities that work collaboratively to promote and engage in actions that advance health (Campbell, 2020).

Empowerment and Critical Consciousness Many authors have argued that health, particularly in marginalised communities, has an irreducibly social dimension and that as a result health problems can seldom be effectively challenged by isolated individuals. Brazilian education activist and social psychologist Paulo Freire states, ‘It is not possible to speak of an actor in singular, even less possible of actors in general, but rather of actors in intersubjectivity, in intercommunication’ (Freire, 1970, p. 127). Empowerment and the development of a critical consciousness have been posited by Campbell et al. (2007) as two of the social-psychological processes which become possible in conditions of debate and dialogue in social groups such as churches or women’s groups. The renegotiation of collective identities within groups needs to happen in conjunction with the development of group members’ confidence and ability to act on collective decisions in favour of health-enhancing attitudes and behaviours. Powerlessness or a feeling of a lack of control over destiny severely undermines the health of people in marginalised or demanding situations (Campbell, 2003; Campbell & Jovchelovitch, 2000; Wallerstein, 1992). People who perceive themselves to be disempowered (i.e. who feel that they have little control of the important aspects of their lives) are less likely to feel that they can take control of their health. Freire’s understanding of education furthers our understanding of why disempowered people are less likely to take control of their health. He criticised the traditional education paradigm in Brazil that featured the

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didactic flow of information from the expert (agronomist) to the farmer who was considered ignorant. He further argued against the extension of knowledge from an expert to an ignorant person. His idea had an extensive effect on the formal education system in his native Brazil and throughout Latin America. Freire described the traditional approach of experts trying to transfer knowledge to ignorant learners as the ‘banking concept of education’, whereby experts attempted to deposit information into the minds of others the way one would deposit money into a bank. He argued that this style of education encourages passivity and acceptance of the status quo among students. Freire said that this approach treats people like objects or empty vessels to be passively filled with the information chosen and delivered by professionals. Freire further argues that this way of providing the information is deliberately used by rich and powerful elites (including professionals) to oppress the poor and powerless (Freire, 1970, 1985; Rifkin & Pridmore, 2001). He called for a problem-posing approach to education to reverse this situation. Freire aimed to understand the processes through which subjects pose problems and problematise everyday life experiences by engaging in critical discussion and then action (Diemer et al., 2006). Freire’s emphasis on the full agency of learners opens up invaluable prospects for understanding and aiding participatory processes (Ramella & De la Cruz, 2000). Freire (1973) argues that a vital precondition for positive behaviour change by marginalised social groups is the development of critical consciousness. Two interlinked aspects of the critical consciousness—understanding and action—are outlined by Freire. The first aspect of critical consciousness involves the development of group members’ understanding of how social conditions facilitate their situation of disadvantage in ways that undermine their health. Developing this understanding involves discussing the social conditions that have fostered situations of disadvantage in ways that undermine health. The second element (action) proposes that the development of a critical consciousness involves people moving through a series of stages. The first stage is characterised by the ‘semi- intransitive’ consciousness, where group members’ understanding is focused on survival and causality is attributed to the supernatural, limiting perceptions of agency. For

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example, people with semi-intransitive consciousness may attribute an epidemic to punishment by a supernatural force for some transgression. Through dialogue group, members may transition to an ‘intransitive stage’, characterised by naïve rather than critical consciousness. This is the stage where group members recognise the epidemic but lack insight into the way the social conditions undermine their well-being and don’t see their actions as capable of changing these conditions. Through a gradual process of profound critical insight, the process of critical insight leads to the final stage of ‘critical transitivity’. This final stage is characterised by the dynamic interaction between critical thought and critical action that may result when people learn to think critically about their life situations. However, life situations characterised by exploitation and oppression lead to the development of ‘adapted consciousness’. This refers to a state where a person accommodates conditions imposed on them and acquires an authoritarian frame of mind (Freire, 1970; Ledwith, 2001). Freire emphasised how marginalised communities can act collectively to produce social change in the Pedagogy of the Oppressed (1970). He suggested that the development of a critical consciousness is a process engaged through dialogical relations. Conscientisation is developed by discussing the contexts in which people live. This dialogue is, according to Freire, facilitated by outsiders who work with groups to co-construct a reflective and critical understanding of the broad range of social, economic, cultural and psychological factors shaping local circumstances. This is what Freire refers to as ‘praxis’, which is a reflection and action on the world to transform it. ‘Problem-posing’ using praxis has been practised in diverse settings in public health, education and other areas to promote conscientisation in work with marginalised communities (Campbell, 2003; Cornish, 2004; Guareschi & Jovchelovitch, 2007; Ramella & De la Cruz, 2000). This approach has been used in other settings to show how groups, and in particular religious groups, can use the approach to address HIV/AIDS stigma in the public health discourse (Campbell et al., 2013; NhamoMurire et al., 2014). Freire’s pedagogy emphasises that the knowledge of different actors must be valued (Jovchelovitch, 2007). Freire further states that when

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one actor’s knowledge is brought into dialogue with that of another, the process illuminates the ‘diversity, expressiveness, and limitations’ inherent in all knowledge. The recognition of the contextual nature of knowledge enables interlocutors to critically reflect upon their own lived experience—how and why they each know what they know—and coconstruct a new understanding of the world from which to act upon this context (Vaughan, 2010). Freire’s theory is prone to over-emphasis and simplification (Cornish, 2004; Roberts, 1996). He has been criticised for not engaging power and the broader social field in his discourse. Blackburn (2000) warns us how the notion of Freire may not promote dialogue but rather a manipulation, domination and ‘the inappropriate imposition of a certain vision of power on people who may not want to be empowered in the way that is being prescribed’. Therefore, all participants in dialogue must develop their strategies of how best to address power. Freire’s idea that dialogue alone can lead to concientisation and transformative social action has been criticised as being hopelessly idealistic, referred to as ‘utopianism’ (Stanley, 1972). Also, Friere has been accused of insufficiently acknowledging the impact of context on the way his pedagogy may unfold in practice. Mayo (1995) critiques Freire as ‘too theoretical’ and argues that Freire does not provide sufficient ‘concrete guidance.’ Mayo’s critiques are perhaps based on the limited view that Freire’s work simply outlines a series of techniques or a method—rather than an approach to promoting social transformation. Freire warns that the techniques he has used in different settings cannot and should not be ‘translated’ from one context to another, but rather his approach to the development of (political) literacy, dialogue and praxis should be reinvented to fit with local context (Freire, 1985; Ramella & De la Cruz, 2000; Vaughan, 2010). Hooks (1993) suggests that Freire neglects the gendered nature of oppression and the historical and situated nature of any successful revolutionary social change. Authors in Zimbabwe discuss the knowledge of different actors into account in the use of community conversations seeking to develop critical dialogue (Campbell et al., 2013; Nhamo-Murire et al., 2014). While the notion of participation in public health discourse, in particular,

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HIV and AIDS issues in religious settings appear to be hugely dominated by leaders, there is clear need to provide spaces for dialogue which will enable church members to pose problems they encounter in addressing HIV prevention and other pressing health issues through critical consciousness.

Power in the Context of Social Capital Bourdieu’s conceptualisation of social capital is often posited as a more useful conceptual tool than Putnam’s. Putnam’s conceptualisation of social capital does not pay much attention to the role of power in the distribution and operation of social capital (Grix, 2001; Wakefield & Poland, 2005). Bourdieu (1986) on the other hand, emphasises the role played by different forms of capital in the reproduction of unequal social relations. He states that unequal social relations are maintained through a range of social processes that sustain inequalities in the interlocking phenomenon of economic capital, human/cultural capital and social capital. For example, he conceptualised neighbourhood social capital as resources inhered within networks consisting of neighbourhood residents as well as potentially other neighbourhoods and institutions that may be used by residents for individual or mutual action. This section will focus on Bourdieu’s conceptualisation of the role played by social capital in reproducing or transforming social inequalities. This chapter conceptualises social capital in terms of people’s participation in mutually beneficial social networks that underpin collective action in the interests of pursuing mutually beneficial goals. Campbell (2003) points out that poor people are subjects of their own lives, yet also subject to forces beyond their control. Similarly, Jovchelovitch (2007) suggests the need for a ‘double-edged’ conceptualisation of power to accommodate this complex dialectic of enablement and constraint. On one hand participation in conditions where material and symbolic obstacles prevent the possibility of real social change can be a hollow exercise. Participating in these futile activities can serve to legitimise the status quo by providing ineffective outlets for dissatisfaction and

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cosmetic solutions to ongoing issues rather than providing an opportunity for marginalised people to pursue their needs and interests. Access to social capital is entrenched in existing social systems, in which certain groups have exclusive access to resources by their dominant position (Wakefield & Poland, 2005). On the other hand, conceptualisations of power necessarily allow for the possibility of empowerment. Power is not a phenomenon to be explained only through inherent negativity; it can also be regarded as a space of possible action, where social subjects strive to change their social conditions (Campbell & Jovchelovitch, 2000). Power is inextricably linked to the sphere where people collectively participate in everyday negotiations that bring different social groups and identities into a dialogue about the possibility of social change. Power is thus deeply rooted in participation. Whenever a community participates in activities and initiatives to enhance the interests of its members, it actualises the power it holds to participate in the shaping of its way of life. The dialectic of constraints and possibilities is the motor of social change (Bourdieu & Passeron, 1977; Campbell & Jovchelovitch, 2000).

Social Change Drawing on the social-psychological processes outlined above, it’s imperative to note that an HIV competent community is a context in which community members are most likely to work constructively together to foster HIV prevention and manage HIV and AIDS in their own lives and the community. Currently, there is a call for better understandings of ‘health enabling community contexts’ (Tawil et al., 1995), and more specifically ‘HIV Competent Communities’ (Campbell, 2003; Campbell et al., 2007; Nhamo et al., 2010), in which people are most likely to access HIV/AIDS services, and least likely to stigmatise the HIV-afflicted. Various strands of the psycho-social research literature point to possible pathways between health-enabling communities and their potential health-enhancing effects. Such community contexts are said to support the development of a health-enhancing reflection-action cycle, through

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providing opportunities for critical thinking about the obstacles to health and the renegotiation of health-damaging attitudes and behavioural norms (Freire, 1973, 1999). Ideally, such critical reflection and action also go hand in hand with an increase in the development of healthrelated agency among previously disempowered groups (Wallerstein, 1992). Such opportunities for critical thinking and empowerment are said to be fostered by the presence of ‘social spaces’ within which community members can discuss and debate health-related attitudes and behavioural norms with liked and trusted peers (Campbell, 2014). An AIDS competent community is a community context that enables or supports the renegotiation of social identities and the development of empowerment and critical consciousness, which are important preconditions for AIDS interventions (Campbell, 2003). The social change approach is a useful starting point for furthering our understanding of ‘competent communities’. There is a gap to expand the framework to include more specific references to the concrete strategies required to build health-related competencies such as HIV prevention.

Conclusion This chapter highlights important points on social capital, power and empowerment and social change. Poignant points are discussed on how social space can be used to tackle health inequalities, particularly HIV prevention and care in marginalised settings. The challenges of social capital of being labelled as utopianism acts as a limitation when using the approach in community health spaces. However, this chapter responds to long-standing calls of conceptual frameworks in public health and social psychology within Africa.

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Guareschi, P., & Jovchelovitch, S. (2007). Article (refereed) participation, health and the development of community resources in Southern Brazil. Journal of Health Psychology, 9 (2), 311–322. Hooks, B. (1993). About Paulo Freire-the man, his work. In P. McLaren & P. Leonard (Eds.), Paulo Freire: A critical encounter. Routledge. Jovchelovitch, S. (2007). Knowledge in context: Representations, community and culture (1st ed.). Routledge. Kawachi, I. (2006). Commentary: Social capital and health – making the connections one step at a time. International Journal of Epidemiology, 35 (4), 989–993. Kawachi, I., Subramanian, S. V, & Kim, D. (Eds.), (2008). Social capital and health. Springer, New York. Ledwith, M. (2001). Community work as critical pedagogy: Re-envisioning Freire and Gramsci. Community Development Journal, 36 (3), 171–182. Mayo, P. (1995). Critical literacy and emancipatory politics: The work of Paulo Freire. International Journal of Educational Development, 15 (4), 363–379. https://doi.org/10.1016/0738-0593(95)00021-T. Nhamo-Murire, M., Campbell, C., & Gregson, S. (2014). Community group membership and stigmatising attitudes towards people living with HIV in Eastern Zimbabwe. Journal of Community Health, 39 (1). https://doi.org/10. 1007/s10900-013-9741-6. Nhamo, M., Campbell, C., & Gregson, S. (2010). Obstacles to local-level AIDS competence in rural Zimbabwe: Putting HIV prevention in context. AIDS Care, 22(Suppl 2), 1662–1669. http://www.ucm.es/BUCM/checkip. php?/docview/847283727?accountid=14514. Portes, A. (2009). Social capital: Its origins and applications in modern sociology. Knowledge and Social Capital , 43–68. https://doi.org/10.1016/b9780-7506-7222-1.50006-4. Ramella, M., & De la Cruz, R. B. (2000). Taking part in adolescent sexual health promotion in Peru community participation from a social psychological perspective. Community & Applied Social Psychology, 10, 271–284. Rifkin, S., & Pridmore, P. (2001). Partners in planning: Information, participation and empowerment. MacMillian. Roberts, P. (1996). Critical literacy, breadth of perspective and universities: Applying insights from Freire. Studies in Higher Education, 21(2), 149–163. Stanley, M. (1972). Social development: Critical perspective. Basic Books. Tawil, O., Verster, A., & O’Reilly, K. (1995). Enabling approaches for HIV/AIDS promotion: Can we modify the environment and minimize risk? AIDS, 9, 1299–1306.

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UNAIDS and Stop AIDS Alliance. (2015). Communities deliver. 23–80. Vaughan, C. (2010). When the road is full of potholes, I wonder why they are bringing condoms? Social spaces for understanding young Papua new guineans’ health-related knowledge and health-promoting action. AIDS Care, 22(2), 1644–1651. https://doi.org/10.1080/09540121.2010.525610. Wakefield, S. E., & Poland, B. (2005). Family, friend or foe? Critical reflections on the relevance and role of social capital in health promotion and community development. Social Science & Medicine, 60 (12), 2819–2832. Wallerstein, N. (1992). Powerlessness, empowerment, and health: Implications for health promotion programs. American Journal of Health Promotion, 6 (3), 197.

Part III Stigma and Health

4 Alzheimer’s Disease—Molecular Defect, Public Perceptions and Stigma in South Africa Tando Maduna and Ben Loos

Introduction Alzheimer’s disease (AD) is a neurodegenerative disease resulting in gross damage of brain areas mainly involved in cognitive function. These manifest in learning difficulty, reasoning, judgement and problemsolving (Cacace et al., 2016). Patients are also characterized by impaired short-term memory, disorientation and confusion. At later stages, patients experience physical impairment in speech, swallowing and walking (“2019 Alzheimer’s disease facts and figures,” 2019). AD is progressive and takes years before disease manifestation and diagnosis. Patients first present with mild cognitive impairment (MCI) which is subsequently followed by progressive dementia, both corresponding to the underlying neurological changes and molecular pathology (Chen T. Maduna · B. Loos (B) Department of Physiological Sciences, Stellenbosch University, Stellenbosch, South Africa e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_4

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& Mobley, 2019). AD can be of sporadic or familial/genetic origin (Fig. 4.1), characterized by late or early life onset, respectively. Thus, sporadic AD (sAD) is also referred to as late onset AD and the main risk factor is ageing, with most cases presenting after age 65. Familial AD (fAD) is referred to as early life onset AD, occurring at younger ages and is mostly coincidental with a family history of dementia, characterized by faster progression of neurobiological changes. Although a close association exists between familial AD and genetic mutations (Cacace et al., 2016; Falgas et al., 2020), which crucially point towards the underlying molecular defects, the main risk factor associated with AD is increasing age, with the majority of AD diagnoses due to sAD and only 5–10% of cases attributed to fAD (Cacace et al., 2016; Liu & Li, 2019). AD is the main cause of dementia and resulted in 121,404 deaths in 2017 in the United States, making the disease the sixth leading cause of death in the country and the fifth leading cause of death among Americans age 65 years and above. Also, while deaths resulting from stroke, heart disease and prostate cancer among Americans decreased between 2000 and 2017, reported deaths from AD increased 145% (“2019 Alzheimer’s disease facts and figures,” 2019). Epidemiological studies throughout sub-Saharan Africa also revealed AD as the main cause of dementia, representing 57–89% of cases investigated (Lekoubou et al., 2014). Alarmingly, it is estimated that by the year 2050, about 72 million people of the sub-Saharan population will present with AD and dementia (Kobayashi et al., 2019), especially in low- to medium income countries with the highest incidence and prevalence in women (Kobayashi et al., 2019; Lekoubou et al., 2014). With the South African population increasingly ageing, as life expectancy increases, a consequential rise in the prevalence of noncommunicable diseases is projected, especially those arising from ageing and neurodegeneration (Gómez-Olivé et al., 2013). Previous reports estimated an 11% increase in the South African population older than 60 years by 2030 supporting the notion of an increase in dementiarelated illness (de Jager et al., 2015). A research gap thus exists for epidemiological and clinical studies with a focus on AD and dementia in sub-Saharan countries, especially in South Africa (Lekoubou et al., 2014). This will bring South Africa in line with developed countries

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Fig. 4.1 Comparative summary of familial and sporadic Alzheimer’s disease1

1 Alzheimer’s

disease can either be of early or of late onset in nature. Early onset Alzheimer’s disease is also known as familial Alzheimer’s disease (fAD), starting at young age due to genetically inherited mutations. Late onset Alzheimer’s disease is termed sporadic Alzheimer’s disease (sAD) due to its unpredictable onset, developing at a later stage around 65 years of age. Both fAD and sAD result in amyloid plaques, neurofibrillary tangles and neuronal proteotoxicity, followed by cognitive and behavioural impairment.

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where major in-depth longitudinal studies have been conducted for decades, dissecting the incidence and prevalence of AD at different age groups and within various socio-economical profiles, including an assessment of gender differences and accurately reporting the number of deaths due to this debilitating illness (“2019 Alzheimer’s disease facts and figures,” 2019; de Jager et al., 2015; Lekoubou et al., 2014; Pilleron et al., 2015; Ponjoan et al., 2019). Of note, AD and the associated cognitive decline and dementia are highly correlated with education and socio-economic status, with an additional component of poor nutrition suggesting a greater disease burden in the most vulnerable of communities (de Jager et al., 2015, 2017). Stigmatization of AD patients is also a major worldwide problem, with more than one-third of patients reporting societal marginalization (“World Alzheimer Report 2019: Attitudes to dementia,” 2019). Disqualified from full social acceptance, stigmatized individuals and “their image of themselves must daily confront and be affronted by the image which others reflect back to them” (Goffman, 2009, p. 154). In this chapter, the molecular parameters and neurobiological consequences of Alzheimer’s disease will be discussed, in an attempt to highlight the growing understanding of the neuronal dysfunction, as well as the importance of awareness for the prognosis and progression of mild cognitive impairment and dementia. The roles of mitochondrial dysfunction and autophagy will be explored in the context of amyloid β aggregation and tau hyperphosphorylation, so as to highlight key molecular defects that contribute to the aetiology of the disease and may present novel avenues for therapeutic intervention. This will be followed by a review of social perceptions, impact and stigma associated with Alzheimer’s disease and the need to foster enhanced awareness and support through science communication efforts carefully aligned with the culturally unique South African context.

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On the Molecular Defects Associated with Alzheimer’s Disease The key pathological hallmarks of AD centre around the increased localization, accumulation and deposition of amyloid beta (Aβ) plaques, abnormal deposits, in the extracellular space and the formation of tau neurofibrillary tangles (NFTs), also abnormal fibres, intracellularly, in particular within neuronal processes (Liu & Li, 2019; Thordardottir et al., 2017). These pathological abnormalities, as a result of a defect in protein degradation, point towards key molecular dysfunctions that play a major role in the sporadic onset of the disease. The majority of fAD cases are due to mutations in the Presenilin 1 or 2 genes (PSEN1 or PSEN2), which are involved in lysosomal acidification and amyloid precursor protein (APP) processing as well as mutations, including duplications in the APP gene which encodes the amyloid-β (Aβ) precursor protein (Lanoiselee et al., 2017). In the next section, these molecular hallmarks of AD pathology are described and their contribution towards AD-specific pathogenesis is highlighted.

Genetic and Molecular Pathology of Alzheimer’s Disease Amyloid β Aggregation—Amyloid Precursor Protein and Presenilin Amyloid Precursor Protein (APP) is a type 1 transmembrane family glycoprotein expressed at the cell surface of various cell types including neurons (Chen & Mobley, 2019; Corbett & Hooper, 2018; Hanger et al., 1992). APP is processed by either α- or β-secretase enzymes, yielding the “α” C-terminal fragment, a-CTF, also known as C83, as cleavage occurs at the amino acid position 83 of the C-terminus, or the “β” C-terminal fragments (b-CTF, or C99). When APP is subsequently cleaved by γ-secretase, the APP intracellular domain (AICD) is formed (Chen & Mobley, 2019).

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Alternatively, sequential cleavage by β-site APP-cleaving enzyme 1 (BACE1) followed by γ-secretase results in the generation of the amyloid β (Aβ) peptides of amino acid length 40 to 42. Aβ40 is more prominently produced than Aβ42, with Aβ42 being more prone to aggregation (Chen & Mobley, 2019; Citron et al., 1995; Hanger et al., 1992). This aggregate prone characteristic elicits toxicity within the neuronal cell. Hence, under normal, physiological conditions, both Aß40 and Aß42 are being generated, with the latter having important functions in the control of synaptic excitability. This is important, as it indicates that the heightened rate of Aß42 generation is associated with pathology. This pathway and its activity, is known as the “amyloidogenic” processing of APP and when increased, is one of the main pathogenic hallmarks of AD (Corbett & Hooper, 2018). The α-secretase cleavage, however, follows the “non-amyloidogenic” processing pathway of APP, as cleavage occurs within the Aβ sequence, thereby preventing Aβ peptide formation and aggregation (Corbett & Hooper, 2018; Haass et al., 1995). Presenilins play a crucial role in APP cleavage due to the catalytic activity conferred towards γ-secretase activity (Zhang et al., 2013). These transmembrane proteins (Fraser et al., 2000) are ubiquitously expressed in the mammalian system, comprising 2 homologues that share 67% sequence homology, termed Presenilin 1 (PSEN1) and Presenilin 2 (PSEN2) (Zhang et al., 2013). PSENs form part of the components comprised within the catalytic core of γ-secretase and are responsible for its proteolytic functions, i.e. the cleavage and breakdown of its targets (Fraser et al., 2000). PSEN function facilitates APP cleavage for the production of the AICD which is also involved in apoptotic cell death (Fraser et al., 2000) as well as Aβ generation, whereby 90% of the Aβ formed is attributed to Aβ40 while 10% is attributed to the toxic Aβ42 (Kelleher & Shen, 2017). This 10% attribution to the toxic Aβ42 is therefore associated with natural brain function and ageing. The majority of PSEN mutations involved in AD pathology are due to missense mutations localized at the transmembrane domains which are highly conserved between PSEN1 and PSEN2 (Fraser et al., 2000). By using animal models it has been demonstrated that PSEN mutations act directly through a loss of function mechanism, altering the

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cleavage of APP and favouring the production of longer Aβ (42– 43) peptides. These tend to form fibrils (Fraser et al., 2000) as they are highly hydrophobic and self-aggregate severely, increasing amyloid plaque formation similar to those found in brains of AD patients (Kelleher & Shen, 2017; Selkoe & Hardy, 2016). The progression of amyloid plaque formation occurs in stages, whereby the Aβ fragments, in particular those composed of 42 amino acids or longer, accumulate and diffuse into the extracellular compartment. Here they mature and form dense deposits that are associated with abnormal neuronal processes, termed dystrophic neurites—(Chen & Mobley, 2019; Selkoe & Hardy, 2016).

Neurofibrillary Tangles (NFT’s) and Hyperphosphorylation of Tau Neurofibrillary tangles (NFTs) are non-membrane bound bundles of abnormal filaments that are intracellularly deposited, and aggregate within neuronal cell bodies and degenerating nerve cell processes (Müller-Hill & Beyreuther, 1989) due to the hyperphosphorylation of the neuronal microtubule-associated protein, tau (Selkoe, 1994; Zhang et al., 2013). They are different from Senile plaques which are spherical lesions that result from the assembly and accumulation of structurally diverse deposits of extracellular Aβ fragments and filaments surrounded by morphologically abnormal dendrites and axons, with the presence of reactive astrocytes and activated microglia (Müller-Hill & Beyreuther, 1989; Selkoe, 1994). Tau is a phosphoprotein which binds to and stabilizes tubulin, a member of the cytoskeletal component that maintains neuronal integrity and allows movement and transport of organelles. As we shall see later, the movement of key organelles involved in proteostasis and energy generation in the form of adenosine triphosphate (ATP) relies on a functional microtubule network. Importantly, when tau is hyperphosphorylated, it translocates to the soma and dendrites where it forms NFTs and the aforementioned filaments.

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As tubulin becomes impaired due to tau hyperphosphorylation, vesicular and mitochondrial movement becomes disrupted causing disintegration and collapse of the cytoskeleton (Chakravorty et al., 2019). Tau hyperphosphorylation results in conformational changes whereby the native tau molecule is folded, forming filaments through aggregation. This is due to proteolytic truncation on the N- and C-terminal end of tau which follows tangle formation. It is thought that tau truncation may stabilize NFTs by increasing the abundance of filaments or by stabilizing the filaments after their formation (Binder et al., 2005). This has been demonstrated in vitro, in models of both fAD and sAD, whereby the presence of the C-terminal tail of tau inhibited filament formation, acting as an inhibitor of aggregation. To what extent tangles of hyperphosphorylated tau and increased presence of Aβ plaques are causative in the pathophysiology of AD or manifestations of other molecular defects associated with the disease remains a topic of intense research (Hawkins & Duchen, 2019). It is becoming increasingly clear that a high degree of molecular cross-talk exists between tau, Aß as well as caspases, and critically includes mitochondrial function, mitochondrial quality control and neuronal protein degradation systems. This shall be the focus of the following section.

Mitochondrial Dysfunction and the Aetiology of Sporadic Alzheimer’s Disease The “oxidative stress hypothesis” of AD and other neurodegenerative diseases provides clues on key pathophysiological parameters characteristic of sAD, with ageing as major causal risk factor. Aβ and tau dysfunction results from cumulative oxidative damage which underpins the slow but progressive nature of late life onset of AD (Pajares et al., 2018). While oxidative stress and protein damage are inherent parameters of the physiological ageing process, neurons become severely affected due to their high energy demands, high protein synthesis and degradation rate as well as their terminally differentiated nature, resulting in heightened susceptibility to cell death onset.

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Mitochondrial respiration and oxidative phosphorylation play a key role in preserving and maintaining the high neuronal ATP demand. Indeed, neurons rely heavily on mitochondrial respiration. Adult neurons do not efficiently produce energy through glycolysis due to low levels of the required metabolic enzymes such as 6-phosphofructo-2kinase/fructose-2,6-biphosphatase, and as a consequence the brain relies on additional substrates, such as lactate. Brain imaging using 18Ffluorodeoxyglucose (FDG) tracer with positron emission tomography (PET), allows the assessment of this metabolic activity by tracing the uptake of glucose that has been labelled with the tracer. Importantly, FDG-PET studies have shown a reduction in glucose metabolism and consumption in the brains of AD patients (Swerdlow, 2018), supporting the notion of a metabolic change or dysfunction. In addition, studies report deficiencies in the pyruvate dehydrogenase and the α-ketoglutarate dehydrogenase complexes, which are integral for mitochondria-dependent efficient energy production while minimizing and controlling oxidative damage (Swerdlow, 2018). This dysregulation in respiratory mechanisms and turnover, with increased mitochondrial damage, underpins the neuronal degeneration observed in ageing as well as the onset of sAD (Pajares et al., 2018; Sonntag et al., 2017). Furthermore, whole-genome profiling has reported mitochondrial impairment in AD patients, as well as impaired calcium signalling which is closely related to the functional status of mitochondria, in addition to inflammation (Chen & Mobley, 2019; Martín-Maestro et al., 2017). In the brains of patients with MCI and in advanced stages of AD, protein damage has been reported which was characterized by an increased expression of oxidative stress markers which is attributed to mitochondrial damage (Pajares et al., 2018). Current evidence suggests a critical molecular link between mitochondrial dysfunction, caspase activation and the promotion of tau hyperphosphorylation and neurofibrillary tangle-like pathology (Martín-Maestro et al., 2017). Mitochondrial damage is known to cause and increase oxidative stress due to electron transport leakage and the release of free radicals, especially reactive oxygen species (ROS), one of the main initiators of protein misfolding. In fact, increased oxidative stress, i.e. a higher generation of ROS relative to the cell’s antioxidant capacity, is fundamentally

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Fig. 4.2 The molecular aspects of Alzheimer’s disease development2

implicated in protein aggregation as proteins are more susceptible to structure-altering amino acid side chain modifications (Lévy et al., 2019; Martín-Maestro et al., 2017). In particular cysteine, tryptophan and methionine oxidation have been shown to result in the Glyceraldehyde3-phosphate dehydrogenase (GAPDH) aggregation, one of the main ubiquitously expressed markers of ageing. Moreover, oxidative reactions between copper ions and the Aβ peptides have been suggested to generate superoxide, hydrogen peroxide and hydroxyl radicals. In addition, copper binds four histidine residues within the APP sequence, altering the structure of APP which is implicated in the protein damage that is characteristic of the AD brain (Lévy et al., 2019). It is hence becoming increasingly evident that a dynamic interplay exists between mitochondrial dysfunction-mediated oxidative stress and toxic APP and Aβ generation, suggesting that mitochondrial function and quality control cannot be dissociated from cellular proteostasis function (see Fig. 4.2). 2 In healthy neurons the amyloid precursor protein (APP) is cleaved through the proteolytic actions of presenilins (PSENs, PSEN1 and PSEN2), a group of transmembrane proteins that form the catalytic core of the γ-secretase complex. Subsequently, sequential cleavage of APP

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These are insights that drive current understanding as well as drug development. While mitochondrial damage may promote APP/Aβ misfolding and aggregation, it is misfolded and aggregated APP/Aβ which also causes mitochondrial dysfunction and downstream oxidative stress. Systems level insights are increasingly required to better understand this level of complexity. Molecularly, this notion is supported by the fact that in post-mortem brains from AD patients Aβ and APP are localized on the mitochondrial membrane which is not the case in control brains and is not expected to occur in normal conditions (Wang et al., 2016). The localization of Aβ on the mitochondrial membrane may impair mitochondrial function by blocking import channels, impacting the localization of other mitochondrial proteins and disrupting the electron transport chain and further increasing ROS production (Pajares et al., 2018; Swerdlow, 2018; Wang et al., 2016). This is strengthened by the finding that the APP sequence contains a mitochondrial targeting motif which allows APP to partly translocate to the mitochondrial membrane. The presence of an acidic motif within the APP sequence prevents its full passage resulting in blockade of the import pore, compromising its molecular infrastructure. Thus, APP partially protrudes into the mitochondrial space and into the cytosol (Swerdlow, 2018; Wang et al., 2016). In addition, increased oxidative stress affects Aβ and tau structure and function, contributing to neurotoxic effects and ultimately increasing neuronal cell death. For instance, Aβ can become oxidized on its by γ-secretase and BACE1 at the β amyloid sequence results in the release of Aβ peptides of 40 amino acid length (Aβ40) or of Aβ fragments that are 42 amino acids long or more (Aβ42). In the neurons of Alzheimer’s disease brains, mutations in the PSENs results in an increase of Aβ42 which tends to aggregate in the cytosol, increases toxicity and forms amyloid deposits and senile plaques in the extracellular space. Aβ aggregation increases oxidative stress in the cell, resulting in mitochondrial dysfunction and the disruption of microtubules due to the hyperphosphorylation of tau with the consequence of neurofibrillary tangle formation. In addition, Aβ and APP accumulates on the membrane of mitochondria which impairs the electron transport chain (ETC) and subsequent ATP generation. This increases oxidative stress further due to an increase in reactive oxygen species (ROS) generation. Increased ROS also impairs APP cleavage, resulting in Aβ aggregation and further tau hyperphosphorylation. Tau hyperphosphorylation destabilizes the microtubules, thereby impairing mitochondrial movement and function.

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methionine position 35, a process which is exacerbated with increasing age (Pajares et al., 2018). Similarly, the mitochondrial dynamin-related protein 1 (DRP1), which is involved in mitochondrial fission and fusion dynamics, can interact with tau, disrupting microtubule stability and organelle trafficking, ultimately resulting in neurodegeneration through mitochondrial dysfunction (DuBoff et al., 2012; Shafiei et al., 2017). Not only mitochondria, but also autophagosomes rely on a functional tubulin network, facilitating organelle trafficking.

Autophagy Dysfunction in Alzheimer’s Disease Oxidative stress, protein misfolding and aggregation play a critical role in ageing as well as the development of Alzheimer’s disease (see Fig. 4.2). Under normal conditions, the inherent intracellular clearance mechanisms maintain protein homeostasis, i.e. proteostasis, thereby preserving the fine balance and coordination between protein synthesis, folding and assembly. Proteostasis is enabled due to firstly the ubiquitin–proteasome system which unfolds short-lived and misfolded proteins, and secondly the autophagy-lysosome system which clears long-lived proteins and protein aggregates through lysosomal catabolic degradation (Hipp et al., 2019; Labbadia & Morimoto, 2015). Autophagy, from Greek “self-eating”, refers to a multistep cascade that sequesters old, dysfunctional and unwanted proteins for vesicular engulfment and clearance. Three processes have been described namely, macroautophagy (MA), chaperone-mediated autophagy (CMA) and microautophagy (Klionsky et al., 2011). Since the majority, i.e. > 99%, of proteins are long-lived, autophagy is crucial in preserving neuronal proteostasis. Neurons are particularly reliant on a functional autophagy system, since their high protein synthesis rate as well as their terminally differentiated nature demands a matching protein degradation rate (Loos et al., 2017). The role of autophagy impairment has become increasingly evident following findings of immature autophagosomes and vacuolar structures accumulated abundantly within dystrophic neurites, including both axons and dendrites in biopsies derived from the neocortex of AD

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patients (Nixon et al., 2005) as well as in animal models of APP overexpression (Liu & Li, 2019). The critical role of autophagy dysfunction in ageing and neurodegeneration is becoming increasingly clear, highlighting the importance of autophagic activity or flux, i.e. the rate of protein degradation through the entire autophagy pathway, in the clearance of toxic intracellular Aβ, and extracellular plaques (Maduna et al., in press). Current advances have also identified autophagy markers as potential biomarkers of AD in patient cerebrospinal fluid (CSF) and blood, suggesting a targeting of autophagic flux through diet and the repurposing of known autophagy-regulating and commercially available drugs as attractive novel treatment avenue (Cho et al., 2019; Ntsapi et al., 2019; Tardif et al., 2019). Since the generation of powerful transgenic mouse models, the critical role of autophagy in the development and onset of neurodegeneration has been revealed, and the importance of precision monitoring and targeting of autophagic flux demonstrated (Hara et al., 2006; Mizushima et al., 2010). We now discuss the impact of macroautophagy dysfunction on AD pathology and for this purpose “autophagy” will be used to refer solely to macroautophagy, which is briefly outlined below and described in Fig. 4.3. Autophagy processes are extensively described by Ntsapi and colleagues (Ntsapi et al., 2018) while the role of the various autophagy pathways in ageing and neurodegeneration is discussed in Maduna and colleagues (in press). Importantly, autophagy occurs constitutively at low basal levels in all mammalian cells and tissues under normal conditions, and becomes upregulated due to enhanced intracellular stress, tuning nutrient sensing and metabolism (Ntsapi et al., 2019). A critical role is played by 5’ adenosine monophosphate-activated protein kinase (AMPK) signalling (Lévy et al., 2019; Ntsapi et al., 2019), which enhances autophagy upon a decrease in the cellular energetic charge. Moreover, in low energy states and upon amino acid depletion, the target for rapamycin complex 1 (TORC1) is dephosphorylated, which, through conformational changes with downstream targets, allows the upregulation of autophagy (Suzuki et al., 2015). Moreover, chronic oxidative stress activates gene expression of autophagy-related (Atg) proteins (Lévy et al., 2019).

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Fig. 4.3 Autophagy dysfunction and a decline in Aβ clearance3

3 (a)

Under normal conditions, autophagy is upregulated upon energetic perturbations, nutrient deprivation and oxidative stress. The phagophore is formed and elongated through recruitment of autophagy-related proteins, beginning with ATG1, which are localized along the phagophore

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Upon autophagy upregulation, de novo synthesis of the phagophore occurs as membranous components are cleaved off from either the Golgi apparatus, plasma membrane or mitochondria, especially in starvation conditions (Rubinsztein et al., 2012), while recruiting Atg proteins such as Beclin1 (Atg6), ULK1 (Atg1), Atg14 and Vacuolar protein sorting 15 (Vps15). The phagophore is then elongated through further Atg protein recruitment and formation of two conjugation systems, i.e. the Atg7-Atg10 complex that subsequently forms the Atg5-Atg12Atg16L1 complex. This is followed by Atg7-Atg3 mediated microtubuleassociated protein 1 light chain 3-phosphatidylethanolamine conjugation, forming LC3-II from cytosolic LC3-I. LC3 is cleaved by Atg4 protease in the cytosol into LC3-I, forming LC3-II through lipidation which then localizes within the inner and outer membrane of the phagophore and mediates elongation and closing to form a double membrane vesicle termed the autophagosome (Carroll et al., 2015; Kaizuka et al., 2016). During elongation, cytosolic components are either randomly engulfed by the phagophore or targeted for clearance through selective sequestration that occurs when p62/Sequestosome 1 (SQSTM1), a polyubiquitin-binding protein that acts as a cargo receptor, binds LC3II and sequesters autophagy substrates (Loos et al., 2017; Pankiv et al., 2007). The cargo is subsequently digested within an autolysosome that

membrane. Elongation occurs through ATG complex formation and LC3 recruitment, which promotes the closing of the phagophore to form the autophagosome. During this step the phagophore engulfs cytosolic components, such as long-lived and damaged proteins including Aβ42, which will be enclosed within the autophagosome. The autophagosome then fuses with the lysosome to form an autolysosome that degrades the cargo (cytosolic components) which will be released as metabolites that can be recycled for ATP generation or protein synthesis. In neurons of AD patients, a decrease in energy substrates increases oxidative stress which contributes to mitochondrial damage and increases autophagy activation. However, this also stimulates Aβ generation due to aberrant APP cleavage by the γ-secretase complex, which is additionally localized on the autophagosome membrane. Tau hyperphosphorylation prevents trafficking of early autophagosomes, preventing lysosomal and autolysosome formation and hence cargo degradation. (b) In older neurons, dysregulation in the energy sensing machinery results in chronic oxidative stress, which increases mTOR signaling and inhibits ATG1 availability. Thus, phagophore initiation is inhibited, further downregulating autophagy. In this scenario, toxic Aβ accumulates intracellularly and is deposited extracellularly due to the low efficiency of the clearance machinery of autophagy.

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forms as the autophagosome fuses with a lysosome, releasing metabolites back into the cytosol for recycling, ATP synthesis or the synthesis of survival proteins (Carroll et al., 2015; Leidal et al., 2018; Rubinsztein et al., 2011). In the brain, the biogenesis of autophagosomes occurs in the axons, after which they are transported, through retrograde transport, to the soma along microtubules as they undergo maturation along the way (Nikoletopoulou & Tavernarakis, 2018). It has recently been revealed that the autophagosome membrane also contains APP and the γ-secretase complex, suggesting autophagosomes as a possible site for Aβ production, which has been shown to increase with autophagy activation (Di Meco et al., 2019). The ground-breaking work of Nixon and colleagues subsequently led to the discovery of autophagic failure in the brains of mice overexpressing mutant APP, whereby enlarged autolysosomes appeared to have been clogged with undigested materials including Aβ (Nixon & Yang, 2011). Furthermore, PSEN1 mutations and γ-secretase inhibition also results in autophagosome accumulation and significant reduction in retrograde transport as shown in cortical neurons derived from fAD patients (Hung & Livesey, 2018). Taken together these data suggest that as autophagy is pathologically upregulated due to Aβ and NFT loading and chronic oxidative stress in the AD brain (Pajares et al., 2018), while additional toxic Aβ may be in continuous production and accumulation within the autophagosomes (Fig. 4.3) that are forming in the axons. However, due to microtubule defects that result from tau hyperphosphorylation, retrograde transport may be significantly impaired further exacerbating an accumulation of immature autophagosomes, which were initially discovered in patients as early as the 1960s (De Duve & Wattiaux, 1966). Also, mounting evidence points to the impact of autophagy downregulation in AD pathology as blockade of autophagy initiation leads to an increase in Aβ accumulation in various model systems (Liu & Li, 2019; Rocchi et al., 2017). Beclin1 expression is reduced in AD brains while the absence of Beclin1 decreases autophagy and is consistent with an increase in intracellular Aβ accumulation and decrease in clearance (Nixon & Yang, 2011).

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In mice, Beclin1 deficiency disrupted autophagy, increased neurodegeneration and Aβ accumulation (Rohn et al., 2011) but while plasma ATG5 is increased in human patients with dementia or MCI compared to healthy individuals, in the neuronal cells from rats, the ATG5-ATG12 conjugation became significantly increased in response to Aβ induction (Cho et al., 2019). In addition, Aβ accumulated intracellularly in the brains of APP overexpressing mice that were also deficient in Atg7 (Nilsson et al., 2015). Recent evidence demonstrates that hyperactivation of the mammalian target of rapamycin, an integral component of the energy sensing pathway, leads to an increase in tau levels due to the inhibition of autophagy induction (Caccamo et al., 2013). It is has been demonstrated in various model systems, that an enhancement of autophagy indeed recruits amyloid- ß as well as phosphorylated tau to the autophagosome, facilitating their clearance. Strikingly, in a mouse model of AD, Beclin1 overexpression was found to decrease amyloid accumulation and improved learning and memory behavioural deficits (Rocchi et al., 2017; Shoji-Kawata et al., 2013). While currently no known disease modifying treatment exists for AD, various autophagy regulating compounds have been identified and are increasingly characterized, indicating major promise for promoting brain health and neuronal survival in the face of proteotoxicity (Ntsapi et al., 2018, 2019). Autophagy regulators with the shared function of inducing autophagy are classified into 2 groups according to whether they operate in an mTOR-dependent or mTOR-independent fashion (Djajadikerta et al., 2019) (summarized in Table 4.1, which has been adapted from Djajadikerta et al., 2019). Of note, promising avenues are being explored involving known drugs that are either prescribed or undergoing clinical trials for other illnesses, which improved AD-related neurological and behavioural defects (Djajadikerta et al., 2019; Towers & Thorburn, 2016).

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Table 4.1 Summary of autophagy-enhancing therapeutic agents and their mechanisms of action (adapted from Djajadikerta et al., 2019)

Disease Pathogenesis—Diagnostic Approaches and Staging In the past, the diagnosis of Alzheimer’s disease was only possible through histopathological assessment of post-mortem brain tissue, confirming the increased presence of senile plaques and paired helical filaments (Koss et al., 2016). Although current advances have made early diagnosis possible through neurological assessments and brain imaging approaches using magnetic resonance imaging (MRI) to measure brain atrophy; FDG—PET to measure changes in regional glucose metabolism or even Aβ PET imaging to identify and quantify Aβ in the brain (Uflacker & Doraiswamy, 2017) sensitive means to detect AD prior to disease manifestation and onset of symptoms remain limited. For example, MRI is currently employed in medical practice to assess cortical thickness as well as white matter loss, which are measurable only when major atrophy has already occurred. Major functional neuronal compensation exists, highlighting the emergent properties of

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the neuronal network (Dubois et al., 2016; Falgas et al., 2020). However, biomarker screening is increasingly possible by means of cerebrospinal fluid (CSF) analysis, (Selkoe & Hardy, 2016), which is especially important for early diagnosis in individuals that are candidates of developing fAD (Falgas et al., 2020). In addition to PET imaging of tau-based markers (Koss et al., 2016), current research has provided strong evidence demonstrating the high diagnostic power of PET imaging through in vivo APP labelling as well as Pittsburgh Compound-B (PiB)-PET to identify fibrillary amyloid deposits (Bateman et al., 2012; Dubois et al., 2016; Selkoe & Hardy, 2016). It should however be noted that, while MRI, fMRI and PET imaging facilities are widely available, the aforementioned specialized PET imaging facilities are highly limited in South Africa, more so in the rural setting. Alzheimer’s disease progression can be categorized as preclinical AD, mild cognitive impairment (MCI) due to AD, and dementia due to AD. The preclinical stages of AD are characterized mainly by neurological changes in specific brain regions and the presence of Aβ and NFT species in the cerebrospinal fluid (CSF) and in circulation. These changes can, in principle, be assessed and identified even before the development of behavioural symptoms and memory loss. MCI sufferers display elevated levels of Aβ in the brain and already show cognitive decline which may have progressed further than what is age appropriate. However, since the behavioural and cognitive decline in MCI may not interfere with everyday activities, the cognitive impairment may only be noticeable to the patient’s close acquaintances. The preclinical onset of AD may begin approximately 20 years prior to the manifestation of the clinically evident symptoms. It is becoming increasingly clear that an undeniable link exists between ageing, lifestyle, molecular and cellular damage due to oxidative stress and the neurotoxicity that leads to the preclinical onset of, in particular, sAD (Chen & Mobley, 2019). Aß42 levels in the CSF of those presenting with AD may first be elevated compared to healthy individuals and then begin to decline as early as 25 years prior to symptom onset (Selkoe & Hardy, 2016; Wattmo et al., 2020). This is followed by the appearance of fibrillary amyloid deposits in the brain, increased levels of tau in the CSF,

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and progressive brain atrophy roughly 15 years prior to symptom onset (Selkoe & Hardy, 2016). Current approaches have identified the amount of total tau (T-tau) measured in the CSF as a general biomarker for neurodegeneration. Phosphorylated tau (P-tau) specifically marks for AD and hyperphosphorylated tau is commonly accepted to correlate with NFT formation and cognitive decline, which expresses as elevated levels of both P- and T-tau in AD patients (Wattmo et al., 2020). Plasma Aβ levels as well as the ratio of Aβ42/Aβ40 which is reduced in AD patients, reflecting an increase in Aβ42 brain deposition in patients with increased amyloid plaques, can also be measured, (Chen & Mobley, 2019). These molecular changes can be correlated with brain changes as described—in Braak staging, an approach widely used to characterize the neuropathology occurring in AD brains (Dubois et al., 2016; Koss et al., 2016), with progressive protein aggregation in the transentorhinal and entorhinal region corresponding to Braak stage I–II (Koss et al., 2016). Before a diagnosis of MCI can be possible, structural MRI is indispensable in detecting visible changes in specific brain areas. A reduction in hippocampal volume with alterations in the CA1 region and the subiculum and atrophy in other regions of the temporal lobes can be detected, corresponding with MCI development for as long as 4 years before any apparent cognitive impairment. Increased Aβ deposition has been correlated with a decrease in gray-matter volume of the limbic regions (Dubois et al., 2016). The burden of Aβ increases in MCI patients albeit showing a decrease in the amyloid deposition compared to individuals in preclinical stages (Villemagne et al., 2013). Indeed, medium density amyloid deposits can be observed in the Braak Stage IV–V affecting the motor and sensory cortices as well. Neurofilament light protein (NFL), a neurofilament that is present in the axons where it forms part of the neural cytoskeleton, emerges as a novel marker for axonal damage and MCI. Indeed patients with MCI have shown marked increases in NFL in both CSF and blood plasma (Chen & Mobley, 2019). During this stage, the first signs of cognitive impairment may be observed in patients, referred also as the symptomatic phase (Koss et al., 2016).

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Current research suggests a slow progression of Aβ deposition lasting for about 20 years before reaching a plateau, followed by regiontargeted brain atrophy. Within about 4–10 years, cognitive decline and memory impairments can be identified before presentation with dementia (Dubois et al., 2016; Selkoe & Hardy, 2016; Villemagne et al., 2013). Dementia is noticeable due to evident behavioural, memory and cognitive decline which is reflected in and may be correlated with neurological and overall brain damage (“2019 Alzheimer’s disease facts and figures,” 2019). The onset of dementia corresponds with Braak stages V– VI whereby behavioural symptoms appear in parallel with neuropathological alterations that are evident in the neocortex. This is accompanied by continued Aβ deposition and burden within the hippocampus and other subcortical regions, including the thalamus, hypothalamus and cerebellum (Chen & Mobley, 2019; Koss et al., 2016). At this stage, in both sAD or fAD cases, patients present with noticeable memory loss, visual impairments, dyscalculia, aphasia and difficulty in executive functions (Cacace et al., 2016). In the elderly, especially in the case of sAD, it may be challenging to discern and distinguish such behavioural changes initially from normal age-related cognitive decline. A comprehensive comparison between age-appropriate cognitive decline and AD-related behavioural changes may here be of assistance, since approximately 15– 20% of people above the age of 65 display MCI even without AD (“2019 Alzheimer’s disease facts and figures,” 2019; Falgas et al., 2020).

Dementia and AD in South Africa—Public Perception and the Risk of Violence Against Female Patients AD is a fatal disorder with no disease modifying treatment at hand and manifests in progressive behavioural dysfunction and physical challenges. AD is one of the leading causes of dementia, resulting in cognitive decline, memory loss and speech impairment which develop over many years. Suffering from forgetfulness often leads the affected individual to display signs of spatial and temporal disorientation and confusion

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regarding time and place. This fosters and subsequently often manifests in symptoms of depression and personality changes, leading patients to avoid social interaction with family members and friends (“2019 Alzheimer’s disease facts and figures,” 2019; Grossberg et al., 2010). Elderly patients may limit social interaction, especially following diagnosis, due to feelings of shame and helplessness which may result from the lack of understanding from family members, friends and the community at large who are usually not well informed about the disease (“World Alzheimer Report 2019: Attitudes to dementia,” 2019). The progression towards dementia is the longest phase of the clinical stage of AD, and it is during this period individuals are less able to communicate and perform routine tasks involved in daily life such as basic grooming and self-care. In addition, this may be accompanied by incontinence, with individuals becoming more suspicious and agitated around company, exacerbating this scenario. Dementia sufferers need to be assisted substantially with daily activities requiring more assistance and around the clock care than anticipated by the surrounding family network(“2019 Alzheimer’s disease facts and figures,” 2019; Ntsapi et al., 2018; “World Alzheimer Report 2019: Attitudes to dementia,” 2019). The demand for enhanced resources for both patients with AD and their caregivers is however limited in low to middle-income countries. In light of this, there is a major need for awareness about the various dimensions of AD and dementia in poorer countries, where non-profit organizations often carry this responsibility, catering for the most vulnerable communities (Borochowitz, 2011). The South African population is ageing today more than before, increasing the risk of age-related diseases (de Jager et al., 2017). However, very little information on the prevalence of dementia or AD exists for South Africa, reiterating a major need for epidemiological, clinical and neuroscience research (de Jager et al., 2015). In 2011, the World Alzheimer’s Report had estimated the prevalence of AD in Sub-Saharan Africa at approximately 2%, with an increase in 2015 to about 5.5% (Uflacker & Doraiswamy, 2017). This may largely be under reporting since the most vulnerable individuals, especially the elderly, hardly seek medical help until their illnesses affect their daily functioning (GómezOlivé et al., 2013). In rural settings, under reporting may be fostered

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additionally by the lack of awareness or accessibility to medical facilities (Mkhonto & Hanssen, 2018). This affects the elderly drastically (Gómez-Olivé et al., 2013) hence is of major concern. It is estimated that people over the age of 60 will increase from 46 million people in 2015 to 157 million people by 2050 (Aboderin & Beard, 2015), the fastest growing population being in sub-Saharan Africa. In 2015, it was estimated that 186,000 people were living with dementia in South Africa, which is predicted to increase to 275,000 by 2030, with 225,000 of those expected to be women (Brooke & Ojo, 2019). Current comprehensive studies within the Southern African context revealed that people suffering from dementia would be at risk of being accused of witchcraft due to religious and cultural superstitions, especially due to the inability to associate the term “dementia” within local languages (Brooke & Ojo, 2019; Mkhonto & Hanssen, 2018). Hence the elderly often face discrimination, particularly those with cognitive decline and memory impairment (Borochowitz, 2011). It is becoming increasingly clear that enhanced awareness and robust support are required to improve and normalize the terminology and language used when addressing and dealing with AD diagnosis and prognosis (“World Alzheimer Report 2019: Attitudes to dementia,” 2019). In addition, the prevalence of AD is higher in females than males and thus elderly women are more prone to violence (Brooke & Ojo, 2019). Moreover, an existing notion of male honour in some communities may further contribute to partner violence with females being the main victims (Krug et al., 2002).

Stigma Associated with Dementia and Alzheimer’s Disease The term stigma, Goffman explains, refers to an attribute in a person that is deeply discrediting which reduces the stigmatized in our minds to a tainted or discounted status and its roots lie in the perceived discrepancy between a person’s feelings about himself and his relationship to people whom society calls “normal”. Goffman, in his seminal book titled

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“notes on the management of a spoiled identity” describes the stigmatized as “persons who are unable to conform to standards that society calls normal” (page 154). The discrediting effect is very extensive and is sometimes called a failing, a shortcoming or a handicap and constitutes a special discrepancy between virtual and actual social identity. At issue, however, are only those attributes which are incongruous with our stereotypes of what a given type of individual should be (Goffman, 2006, 2009). Stigma plays a major role in the increasing and continuing suffering, contributing to the extent of disability and economic burden associated with mental and geriatric illness as sufferers may become victims of unfair treatment and discrimination (Kakuma et al., 2010; “World Alzheimer Report 2019: Attitudes to dementia,” 2019). Stigma is experienced by people affected by AD and AD diagnosis regardless of socio-economic status, although troubling discrepancies in low to low-middle income countries (L/LMICs) exist. Indeed, patients from L/LMICs, reported being treated unfairly by healthcare professionals during medical visits, citing being often ignored by the consulting clinician, addressing their caretakers, with the highest prevalence in Africa. The report also revealed that men hold more stigmatizing views than women (“World Alzheimer Report 2019: Attitudes to dementia,” 2019). A survey conducted in L/LMICs including South Africa reported a positive correlation between MCI due to AD with the female gender (Kobayashi et al., 2019; Vancampfort et al., 2019), lower academic background and lower socio-economic status among other variables. MCI was also related to higher rates of depression in women who had a history of stroke and heart disease (Kobayashi et al., 2019). Older women are thus one of the most vulnerable groups of society in sub-Saharan Africa and more at risk of being accused of witchcraft or being a witch as the community uses this to explain the “strange” inexplicable behavioural and personality changes manifested in dementia (Brooke & Ojo, 2019; Ndamba-Bandzouzi et al., 2014). Within the South African context, the elderly were previously considered important stakeholders in societies, as keepers of cultural heritage, respected and often honoured as a direct link to the spiritual entities. Research suggests that a shift in cultural awareness and changes in traditional practices due to the influence of western cultures have changed

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the standing of the elderly and their perception in society. There is therefore, a major need to address stigmatization in less affluent communities due where dementia sufferers are particularly at risk of being classified as witches (Mkhonto & Hanssen, 2018; Ndamba-Bandzouzi et al., 2014). This is of concern within the context of mental illness and geriatric disease, and deserves major attention.

Depression and Anxiety—A Caregivers’ Perspective on Mental Health and Social Impact Despite the progressive nature of AD and dementia, and the protracted duration prior to disease manifestation, the diagnosis leads to drastic life changes for the potential caregiver and the patient who is faced with a decrease in independence, initiating a trajectory of life-changing commitments (“2019 Alzheimer’s disease facts and figures,” 2019; Ducharme et al., 2011; Large & Slinger, 2015; “World Alzheimer Report 2019: Attitudes to dementia,” 2019). Current research highlights the impact of taking over a caregiver role on mental and physical health and the social and financial burden associated with diagnosis disclosure. Indeed, this has been found to predispose individuals to mental and physical challenges before, during and after executing caregiving responsibilities (Goren et al., 2016; Hendricks-Lalla & Pretorius, 2018). In addition, caregivers experience difficulties due to a lack of support and understanding from communities and close acquaintances (“2019 Alzheimer’s disease facts and figures,” 2019; Ducharme et al., 2011; Grossberg et al., 2010; Hendricks-Lalla & Pretorius, 2018). Hence, as much as the diagnosis of AD and dementia presents a lifechanging prospect of prolonged disability and peril for the patient, it is also important to highlight the plight of the caregivers who often sacrifice their personal freedom and livelihood to care for their ailing relatives (Large & Slinger, 2015). Various studies conducted worldwide reveal similar problems affecting caretakers independent of culture, geography or level and accessibility of the healthcare system (Goren et al., 2016; “World Alzheimer Report 2019: Attitudes to dementia,” 2019). In 2009, it was determined that the

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majority of care provided to AD and dementia sufferers was home-based, provided by family members including spouses and children of patients (Brodaty & Donkin, 2009). The majority of caregivers are female around the ages of 50–75 with the majority of them reporting unemployment as a resort to fulfil their caretaker roles. In other scenarios, the family caretaker role is taken on by retirees (Goren et al., 2016; Hazzan et al., 2016; Seidel & Thyrian, 2019). Caretakers who maintain employment report minimal annual income as they are unable to fulfil work requirements and may tend to significantly reduce work productivity, often resorting to absenteeism (Goren et al., 2016; Hazzan et al., 2016). Indeed this is due to the time dedicated to the needs of the patient, which could be 8 hours or more over a period of many years (Seidel & Thyrian, 2019). The unpredictability of Alzheimer’s disease such as wandering and spontaneous bouts of aggression could exacerbate the physical strain suffered by caregivers as well as pose difficulties in maintaining relationships with the patient (Hendricks-Lalla & Pretorius, 2018). Despite expressing feelings of preparedness and less perceived burden and aggression towards taking on the caregiver role following diagnosis, the majority of caregivers have reported reluctance in seeking auxiliary assistance and requesting help from healthcare professionals and other formal services (Ducharme et al., 2011; Goren et al., 2016). Importantly, caregivers report having received minimal information about AD, dementia and the ensuing manifestation of the disease at the time when the diagnosis was revealed, leaving them unprepared to plan for the future (Ducharme et al., 2011). Studies reveal that caregivers experience greater comorbidities and suffer insomnia and sleep disturbances, emotional disorders such as depression and anxiety as well as pain, with higher frequencies in medical visits. It is also reported that caregivers have a higher prevalence of frequent alcohol consumption and smoking (Goren et al., 2016; Seidel & Thyrian, 2019). These issues, especially psychological distress, have been shown to be higher in women (Ducharme et al., 2011). Indeed, studies focusing on male caregivers are lacking and existing data shows that men were less likely to approach support groups, preferring to limit their knowledge of the disease in an attempt to control their anxiety towards the prognosis (Hendricks-Lalla & Pretorius, 2018).

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Thus, while epidemiological studies are lacking in AD research, there exists another gap regarding the over encompassing impact of AD in society. The notion of caregivers becoming predisposed to depression and anxiety-related behaviours is alarming and of great concern as this may impact on the well-being of the patient, while further increasing the incidence of mental health and disease burden.

Conclusions and Future Outlook Alzheimer’s disease is debilitating not only for the patients but also for the families and caregivers who have dedicated themselves towards the well-being of those diagnosed with the disease. The majority of AD cases are sporadic and late onset confirming that ageing is indeed a key risk factor in disease aetiology and progression. At the cellular level, major cross-talk exists between cumulative damage; the consequent of enhanced β amyloid generation, loss of mitochondrial function and quality control, with enhanced ROS generation and a failing innate protein clearance system, which is highly characteristic of ageing neurons. Although genetic screening, which can increasingly identify potential risk factors and predict the onset of AD in cases of familial mutations, coupled with current advances in neuroimaging and neurosciences, have contributed substantially to AD diagnosis, major challenges around diagnosis and treatment exist. While faced with an increasingly ageing population, the lack of fundamental neuroscience research and science communication leaves the elderly largely isolated and even faced with stigma in lieu of understanding, medical treatment and support. Research confirms that stigma has been most rife in the most vulnerable of communities, more especially towards elderly women in LMICs with lower academic backgrounds. Within the Southern African context, this deserves major attention, given the rise of violence against women, and the high prevalence of female dementia sufferers being ostracized by their communities. This chapter calls for the allocation of more resources to research and public education. The dissemination of relevant information, particularly to the most vulnerable of communities will create better awareness of

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AD, especially in the rural settings. Moreover, outreach in those communities is essential as dementia can usually not be translated or named in local languages. Resources, flagship programmes and education will be key in addressing this disease, stimulating dialogue to minimize the use of inflammatory language while maximizing the advancement of treatment for Alzheimer’s disease and dementia. Acknowledgments We wish to thank the Claude Leon Foundation South Africa and the South African Medical Research Council (SAMRC) for funding.

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5 Towards a Better Understanding of HIV Prevention Stigma, Religion and Health in Zimbabwe Definate Nhamo and Mercy Murire

Introduction HIV is often viewed as a shameful disease. In most sub-Saharan Africa countries, HIV is strongly associated with promiscuity to the extent that the terms are interchangeable (Gregson et al., 2007). Fear, suspicion and victim blaming have been the norm in most families. Research in many sub-Saharan African countries has found high levels of HIV stigma. Most people do not want to associate or share anything with an AIDS sufferer (Duffy, 2005). People living with HIV are often shunned, treated with contempt and described as immoral (Parker & Aggleton, 2003). Preexposure prophylaxis (PrEP) a drug that contains tenofovir disoproxil fumarate and emtricitabine for people who are HIV negative and, at D. Nhamo (B) University of KwaZulu Natal, Durban, South Africa M. Murire Wits Reproductive Health Institute, University of the Witwatersrand, Hilbrow, South Africa © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_5

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substantial risk of contracting HIV was approved by WHO in 2015 (WHO consolidated guidelines) and subsequently introduced in both South Africa and Zimbabwe in 2016 and 2017, respectively. With this, not much research has been conducted to understand acceptance of oral PrEP within community groups such as religious settings. The limited research highlighted PrEP barriers such as non-acceptance from community and stigma for getting tested for HIV (Mack et al., 2014). Other authors have cautioned how current models of HIV prevention require individuals to combat powerful structural forces for example HIV/AIDS stigma and other social pressures that emerge from cultural institutions such as the church (Giger et al., 2008). The focus of this chapter is on HIV, health, stigma and religion.

The African Epidemic According to UNAIDS’s most recent figures (2020), globally 37.9 million people are living with HIV. In 2019 alone, a total of 1.7 million people were newly infected and 32 million AIDS-related deaths had been recorded since the inception of the pandemic. The annual incidence has slightly declined due to the high uptake of antiretroviral therapy (UNAIDS, 2020) and the subsequent rolling out of Pre-exposure prophylaxis (PrEP) taken by people who are HIV negative to prevent themselves from acquiring HIV (WHO, 2020). Inadequate access to HIV prevention and treatment services has been cited as the cause of new infection and high death rates (Barnett & Whiteside, 2006; Shapiro & Benatar, 2005). The HIV /AIDS pandemic has been cited as the most serious of infectious disease challenges to public health (UNAIDS, 2020), although this is controversial, and some would say that malaria is worse (malariasite.com, 2020), with coronavirus (COVID-19) cited as an emerging threat. Sub-Saharan Africa (SSA) remains the most hard-hit, accounting for 65% of new infections. AIDS remained the leading cause of death in the region in 2019 (Dwyer-Lindgren et al., 2019). The HIV prevalence rate has been declining in sub-Saharan Africa, from 14.3% in 2009 (UNAIDS, 2020) to above 10% in 2017 (DwyerLindgren et al., 2019). While this decline offers hope, the rate of change

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and current high prevalence rate illustrates the tremendous long-term challenge that lies ahead for the provision of treatment and HIV prevention services. The HIV/AIDS epidemic is putting a strain on the already challenged health sectors in AIDS-afflicted African countries. There is growing evidence that HIV prevention efforts can be effective, based on research studies of successful programmes in some of the most heavily affected countries (Campbell & Cornish, 2010; Merson et al., 2000). Moreover, the challenge of “scaling up” programmes that have been successful in particular settings remains huge (Fauci, 2007). Overall, a massive expansion in sustainable prevention efforts is needed. Zimbabwe is one of the countries that has been hard-hit by the AIDS epidemics in sub-Saharan Africa (Avert, 2020). HIV prevalence among adults (15–49 years of age) is estimated at 12.7% (Avert, 2020; UNAIDS, 2020). When HIV/AIDS first emerged in Zimbabwe, the government was slow to acknowledge the problem and take appropriate action (Avert, 2020). While the government founded the National AIDS Council (NAC) in 1999, its response to HIV/AIDS has been compromised by numerous political and social crises that have dominated the political scene and have overshadowed the implementation of the national AIDS policy. The situation has been worsened by poor organization in implementing HIV/AIDS programmes and a lack of resources for HIV (Avert, 2020). In Zimbabwe women are disproportionately affected by HIV, particularly adolescent girls and young women (AGYW), out of the 1.2 million people living with HIV, 730,000 were women (60.83%) (Avert, 2020). A decline in HIV new infections has been recorded from 62,000 in 2010 to 38,000 in 2018. However, caution should be taken when interpreting the data, since it is not known whether the trend is a sign of long-term change or merely a temporary movement. Even with such reductions, massively expanded prevention and treatment care efforts will be needed to sustain these positive changes and in their absence, the AIDS death toll in Zimbabwe is expected to continue to rise. Efforts to prevent the spread of HIV in Zimbabwe have been spearheaded by the National AIDS Council (NAC), non-governmental organisations (NGOs) and some more progressive religious and academic

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organizations. However, the messages promoted by different prevention programmes are often conflicted. Some religious sects have discouraged the use of condoms or other HIV prevention options and placed emphasis on abstinence, contrasting with the strategies of other organizations such as progressive NGOs that advocate for condoms and other HIV prevention options such as PrEP. There is disagreement among concerned groupings on how best to prevent HIV infection. Next is a section on oral Pre-exposure prophylaxis, a pill taken daily to prevent HIV infection.

What Is PrEP? In 2012, the Food and Drug Administration (FDA) Organization approved pre-exposure prophylaxis (PrEP) for use. PrEP is the use of a daily pill tenofovir disoproxil fumarate (TDF) or emtricitabine (3TC) by HIV negative people to reduce the risk of HIV infection among people at high risk of HIV. WHO recommends the use of PrEP among people at substantial risk of HIV. This refers to individuals or population groups that have an HIV incidence of 3% or higher (World Health Organization, 2016). While countries have slowly adopted this guidance, a lot of challenges still remain with individuals on PrEP continuing and sustaining an HIV negative status. Several countries have adapted the WHO PrEP guidance for use at national level (PrEPwatch, 2020). Different countries have highlighted their priority populations for PrEP delivery. For example, Zimbabwe and South Africa have prioritized female and male sex workers, men at risk, sero-discordant couples, pregnant women in relationships with men of unknown status, adolescent girls and young women (AGYW) and transgender people (Zimbabwe consolidated guidelines on ART and prevention). Various countries have also developed implementation plans to guide the delivery of PrEP such as Zimbabwe, South Africa, Zambia, Lesotho, Nigeria, Kenya and Botswana (PrEPwatch, 2020). Several countries including Zimbabwe have also gone on to develop communication plans to guide how PrEP information is disseminated (PrEPwatch, 2020).

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PrEP Stigma HIV/AIDS is a serious problem in sub-Saharan Africa and the challenge of promoting effective prevention, care and treatment is an urgent priority. Stigma is a key impediment to effective HIV/AIDS management (Parker & Aggleton, 2003). Erving Goffman’s (2009) book on management of social identity inspired a whole new world of stigma research. Stigma is the co-occurrence of several components namely, labelling, stereotyping, separation, status loss and discrimination (Link & Phelan, 2001). Stigma comes in when individual behaviour is not in sync with societal beliefs and norms. When a person goes against societal expectations of how to act and does not align with what society has internalized as “normal behaviour”, individuals experience a backlash from society, where society is rejecting the “new way of life” which the individual is trying to introduce. Society usually accepts behaviours that are learnt and internalized and usually responds violently to “new ways” as they have internalized norms, built attitudes towards certain actions and it has internalized normative behaviour. Pre-exposure prophylaxis as we know it, is a drug to prevent HIV and HIV is a vice. Under normative conditions, people should get married and stick to their faithful partners. In that world, there is no room for HIV to enter any union as couples are assumed to be faithful to each other. However, there are challenges to the concept of stigma. One criticism is that social scientists who write about stigma, do not belong to stigmatized groups and they come from a vantage point of theories that are usually uninformed by lived experiences of the people they study (Link & Phelan, 2001; WHO, 2003). In this case, some people who write about PrEP stigma are writing from a theoretical perspective devoid of qualitative research focusing on lived experiences of those who are experiencing the stigma. The social psychological theories should be used to identify gaps and improve the existing theories behaviour (see Chapter 3). PrEP is for populations and individuals who consider themselves to be at high risk of contracting HIV. As such, the first PrEP demonstration projects were rolled out in high-risk populations such as Men who have sex with men (MSM), female sex workers, transgender women and later

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on in sero-discordant couples (Cowan et al., 2018; Hosek et al., 2017). A study conducted in Zimbabwe interviewed female sex workers (FSWs) who were on PrEP. They found that health providers usually question why one is in need of PrEP. Some health workers were quick to judge a person, offer alternative solutions to sex work, all in a bid to discourage a person from taking PrEP and follow what they have internalized as the normative way of living, where a person is to find a suitable partner and stay faithful to that one partner (Nhamo, forthcoming). A clash of internalised beliefs usually happens between health care providers and individuals seeking PrEP such as sex workers. Health care workers will think it better for sex workers to leave sex work and find alternative ways of earning a living. This is when we see stigma in action. Stigma is a process where one formulates a decision or a position through reconciling what they have internalized and what is being presented to them at a particular time. The person will either accept as normative or reject as contrary to beliefs and give a “befitting label”, which society interprets as stigmatizing (Link & Phelan, 2001). Another criticism levelled against the phenomenon of stigma is that research on stigma has mainly been focused on individual actions. Oliver (1992) states that the research on stigma has been on the individual and the consequences of such perceptions at micro-level interactions. Oliver says research on pervasive behaviour and how social exclusion happens is uncommon. Fiske (1998) concludes that there is a need to have more research conducted on how social structures come into play. Goffman (2009) also states the need of placing some emphasis on a “language of relationships and not attributes”. Fine and Asch (1988) say that practice has often viewed stigma or marks a person is given as some attributes of a person rather than designated tags a person is given. With this definition, stigma then focuses our attention to the person who is assigning the label rather than the person to whom the label has been assigned (Sayce, 1998). In this case, the female sex workers (FSWs) who seek PrEP to protect themselves from HIV are given stigmatizing labels such as, home wreckers, promiscuous, lose, ladies of the night, whores and prostitutes. Society gives these women such labels as their behaviours go against the grain, they go against the internalized norms of what a woman can do to

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earn a living. These labels are assigned by society—who in this case are observers.

The Switch/the Internalized Stigma With time the participants, in this case, the sex workers begin to internalize the stigma. This is when the sex workers begin to identify themselves by the labels they are given. This is done to “svotesa” (to gloat) in English language. This means that the sex workers start off by resisting the defaming labels and at some point, they realize that the labels are not going anywhere. They start taking ownership of the labels in a rebellious way to show that nothing the community will say will dissuade them from doing sex work and requesting for PrEP.

Community Perceptions of PrEP When PrEP was first introduced in Zimbabwe, the demonstration study focused on female sex workers (FSWs) (Cowan et al., 2018). In South Africa it was first rolled out to female sex workers and men who have sex with men (MSM) (PrEPWatch, 2020). With that, communities have grown to believe that PrEP is for sex workers. PrEP is thus associated with promiscuity. It becomes a big “hall of shame” when people discover one to be on PrEP. People begin to wonder if the person is HIV positive and is taking ART. The rattling sound that the pill container makes, presence a huge embarrassment to those who are heard with rattling sounds coming from their bags and are using the “kombis” (public transport systems used for commuting). From the qualitative interviews conducted in Zimbabwe—looking at the lived experiences of sex workers on PrEP, some of the insights that came out were that “it is more acceptable for a woman to contract HIV from her husband if they are married. This is the honourable way to live. A married woman does not go onto PrEP to prevent HIV infection from the husband, they have to suffer in silence even if it means contracting HIV knowingly”. Some church groups condone women who go ahead

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and seek HIV prevention options when they are in a marriage setting. Pastors will counsel women against taking PrEP even if the husband is known to have other women. Mukadzi chaiye anoshingirira imba yake A real woman will strive for her marriage

PrEP Adherence Like any medication, PrEP works when taken, if one does not take PrEP, they cannot expect to be protected from HIV. Many people are initiated on PrEP but fail to continue taking it as they are not internally motivated to persist and in some cases, have a low-risk perception. In Zimbabwe, HIV negative people are expected to test for HIV annually to make sure they are maintaining their HIV negative status. Some people test HIV negative today and sero-convert at their next appointment. To avoid serconversions from occurring, HIV negative people who are deemed to be at high risk of contracting HIV (based on the routinely administered risk assessment tool), are encouraged to find an HIV prevention option that works for them and suits their lifestyle. One of the options could be PrEP. When a person is on an effective HIV prevention option, they are not expected to sero-convert. A person could also use what is referred to as combination prevention, where they use two or more HIV prevention options. For example, a person may choose to use PrEP and condoms to prevent both HIV and STIs and/or pregnancy as PrEP only prevents HIV and not STIs nor pregnancy. The next section illuminates the issues of stigma through a case study from some lived experiences (Nhamo et al., forthcoming).

Case Study: Apostolic Sect and Health I grew up in the apostolic sect, never entered a hospital all my life. Got married within the church as a fourth wife. I am 34 and have 5 kids. My

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kids were just dying. Five of my kids died but no other wife had kids who were dying. In total, I gave birth to 10 children from home, with five of them who are alive. This bothered me a lot because no one seemed to care, life went on as usual. (Case study of a woman from Zimbabwe)

There are different types of the apostolic sect in Zimbabwe and here we classify them according to their liberalism. The apostolic sect beliefs are mainly a hybrid of cultural traditions and the bible. They believe that their cornerstone is the ancestors and they draw parallels with the great apostles from the bible, such as Abraham and Moses. This is in line with Maguranyanga (2011) in their UNICEF report on Apostolic religion and utilization of maternal and child health services in Zimbabwe” (Maguranyanga, 2011). In this chapter, we classify the apostolic sect based on their liberalism in cultural beliefs, spiritualism, moral codes of conduct and their beliefs of the bible. All these factors will form what is referred to as the church doctrine. This chapter classifies the apostolic sect into three categories, the conservative, laisse faire and the liberal ones (Gregson et al., 1999; Maguranyanga, 2011). The conservative ones believe that everything including health, is spiritual. They believe that if one is doing things right by the sect doctrine, the ancestors should be able to protect them against ill health and there should be no reason for them to visit the health facility. In the event that one falls ill, the prophets, who are known for performing miracles and interceding on behalf of the church should be able to pray for them, give them holy water and stones to help them get back to good health. If one decides to go against the grain and visit the health facility, upon return to the sect, they will be put under the coach, where they are asked to confess their sins. One might even be asked to remove the white cloth and desist from wearing it until such a time the prophet assesses their allegiance to the sect. The laissez faire try to find middle ground, they encourage their sect members to make it right with their ancestors and God so they do not fall sick. In the event that they do fall sick, they are encouraged to seek help from the sect leaders and prophets first. If that fails, they may go to the health facility to seek medical attention. Upon return to the shrine, one still needs to confess their sins—that they have been to a health facility.

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The penalty here is not as grave as that of the conservatives. The liberals do allow their sect members to seek health services. These sects are less strict on whether one accesses health services or not. The apostolic sect is notorious for their white clothes, both men and women wear white cloth from head to toe with some variations. Some will spice it up with some red or green trimmings. The apostolic sect believes in conducting church gatherings in outside spaces, usually out in the open grounds and rarely do they congregate in church buildings. The sitting arrangement during a church service says it all, the elderly men sit in front, in full view of the younger girls to facilitate the selection of additional wives. The apostolic sect men are well-known for having several wives. When selecting an additional wife, the elder men in the sect will speak as if in the spirit and inform the younger woman God’s intention for her to be the additional wife. The women in the church have no power to reject or question what the Lord has said. They are expected to comply and go with the man to become the other wife. The apostolic sect is notorious for not going to hospital (Nhamo, 2011). They believe in prayer as any ailment or road accident is believed to be the work of evil spirits which need to be waded away. The apostolic sect uses alternative therapies when faced with health problems. The alternative therapies range from prayer, using holy water, pieces of cloth and holystones. Any person who falls ill will go to the pastor for prayer and they will be prayed for and subsequently given water, stones, milk or pieces of cloth that have been prayed for to protect them against the evil spirits that may be attacking them. The apostolic sect does not believe in contraception. The belief is such that women are to continuously give birth as it is a natural phenomenon. The women and children, many a time, serve as a source of cheap labour. Members of the apostolic sect are well-known for being industrious. They are making water buckets, crocheting, making pillows, among other wares to sell. They usually have clearly defined roles, where the men may be responsible for making the wares while the women and children go around the community selling the wares. Women and children are strongly discouraged from going to school. The sect doctrine does not allow the women and children to attend

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school, save in some extreme cases like the laissez faire, where sect congregants are beginning to understand and appreciate the value of education. In some cases, women and children are allowed to go to school, only until they finish primary school level (7 years of school, grade 7). At the end of grade 7, most of the children, especially the girl-child is expected to leave school and get married to some older men within the sect, and the cycle continues when they start having their own children as wife number five. In all this—apostolic men having several wives each and strongly discouraged from going to hospital, the women nor men are allowed to seek HIV prevention methods nor use any HIV prevention options such as pre-exposure prophylaxis (PrEP). The older wives are usually the gatekeepers that teach the younger wives the rules of engagement in the marriage set up. They protect the husband’s interests by teaching the younger wives how to toe the line by not visiting the health facilities, desist from contraceptive use, nor seek HIV prevention methods. The older wives usually play the role of whistle blowers if the younger wives are going against the grain. Where the husband is wealthy, the women are well-taken of, are expected to follow rules in return. In all situations, regardless of the husband’s wealth, one eminent fear is, being sacked from the marriage and sent back to their parent’s home. This act of being chased away from a marriage, regardless of the number of wives a man has, is viewed with such disgrace to the girl’s family. As such, women live with the eminent fear of being returned to their parent’s houses thereby making them abide by the rules of the marriage. The woman in the case study was forced to leave the marriage due to the stigma and shame she carried on the unceasing death of her children. The sect castigated her for having some evil spirits that were on her and killing her children. Given her apostolic upbringing, she endured the stigma for some time until she got to a point where she could not stomach it anymore. When she eventually came to terms with her decision to leave the marriage, she left and no one ever followed up with her. Life continued as usual in that homestead. In line with her beliefs, after she left the marriage, she decided to work as a vendor to enable her to fend for herself

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and the five children. Vending came as second nature to her as she grew up within the apostolic sect selling wares. Life in Harare was hard for Talent (pseudonym). Vending was a risky business as the City fathers would raid vendors and seize their wares at random. Like many vendors, Talent resorted to selling her wares at night. She would leave home around 5 pm, spend the night selling her wares and go back home during the wee hours of the morning. This continued for some time, with Talent barely making enough to feed her children and send them to school. One chilly day, on her way back home, after spending the night selling her wares in the city centre, Talent met a young woman on her commute. The women struck some conversation with Talent, asking her how business was and where she was working from. Talent responded casually, all the while thinking the young woman, like her, was also selling wares in town during the night, only to realize the woman was a sex worker, coming from selling sex and going back home to catch some sleep. It took Talent some time to try and understand what the sex worker did for a living as this was a foreign trade to her. Talent needed a lot of convincing and eventually, Precious (pseudonym) managed to convince Talent she would definitely make more money if she joined sex work rather than sell wares. The promised income was attractive to Talent as all she was thinking of was how her children were being sent away from school due to inadequate school fees. Her single motivation was to break away from the beliefs of the apostolic sect and send her children to school to enable them to have a better future and run away from life as she knew it. Talent was initiated into sex work. After being convinced by Precious that sex work was work, and her single motivation for engaging in sex work would be, fending for her children. She was sold. She was told that the single rule of engagement was never to make lasting relations with clients and treat each client as a transaction. Talent started sex work and before she knew it, her quality of life had improved dramatically, she was able to send all her five children to school, pay for the school fees without struggling as much, and be able to provide for them in every way. Precious also introduced Talent to the sex work clinic where she would get regular treatment for STIs as well as pre-exposure prophylaxis (PrEP)

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to prevent her from contracting HIV. For Talent, sex work was not a deal breaker as she came from a background where sharing a man was the norm. The transition into sex work was difficult at first but, once she got into it, it was work. Again, Talent needed a lot of convincing for her to be able to make her first trip to the clinic. Talent had never in her life visited a health facility, this was such a foreign concept to her. After several weeks of convincing, she managed to go to the clinic where she was initiated on PrEP. To keep herself sane and not feel guilty about abandoning her childhood love for the apostolic sect where she was raised and made to believe was life, Talent still works as a vendor by day and sells sex by night. This way, her children believe their mother is a vendor, the neighbours and the community still view her as a vendor and is able to maintain some social standing in her community. Talent has become very religious with her PrEP and is quite adherent, she has never looked back. This was the case here for Talent, but not a lot of people are able to go against their church doctrines. Using the socio-ecological model as our theoretical basis, some new HIV prevention interventions may not be as impactful if we leave the traditional bastions of support such as church and other community groups (Giger et al., 2008). Failure to partner with society and community, health interventions are likely to fail. Church pastors are the voice of reason in communities. If we negate them, all efforts will fail. It is therefore imperative to involve key influencers in our interventions to avoid conflicting messaging. The next section explains the theoretical basis of the socio-ecological model and how it may impact emerging health interventions.

Theoretical Basis Socio Ecological Model This chapter is framed on Sallis and Owen’s (2002) socio-ecological model using five levels of influence. A socio-ecological model provides a framework for understanding how the interaction of multiple interventions influence HIV prevention strategies. The central tenet of the model

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is that HIV prevention strategies or options are based upon complex interactions of different factors represented by circles (see Fig. 5.1). Each circle represents individual’s knowledge, family and peer networks, community, service delivery and enabling environment that comprises of religious and cultural values. The model postulates that while individual factors are important, the other components play an important factor in health-related decision-making. This chapter uses the socioecological model to encapsulate how integrating HIV prevention options such as PrEP and the five levels of the socio-ecological model can produce complementary effects. Without the consideration of a comprehensive framework, programme implementers’ work may not achieve the desirable results. Talent’s case study revealed several barriers and enablers which are characterized below according to the five levels of the socio-ecological model. Structural Enabling Environment Service delivery

Relgious and culutural values Gender norms

Clinical ACCESS Quality of service

Community Family and Peer networks

Social collec ve efficacy

Interpersonal networks Peer Influence Social support

Individuals Behavioural Knowledge Self Effficay

Fig. 5.1 Socio-ecological model

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Individual In the case study, Talent grew up in the apostolic sect where she internalized principles such as, coming to terms with the fact that a man can have many wives and she can be a fourth wife, knowing that women do not go to school, they are a source of labour, they sell wares to enable them to fend for the family. The same principles Talent grew up in still applied in her life even after physically leaving the apostolic sect and having left her husband. While running away from the apostolic sect where things were dictated to Talent and she would comply without question, she still lived by those beliefs. This is generally the norm with most apostolic sects where women are prevented from accessing any health systems for their health. Also, the cultural belief of labelling sex work as prostitution hindered Talent from disclosing to her children job.

Family and Peer Networks Precious became a source of support to Talent. She managed to introduce Talent to PrEP and narrated to her all the benefits of using PrEP while doing sex work. After several attempts of convincing Talent why she should take up PrEP she eventually agreed.

Community Some cultural beliefs acted as a barrier were it is acceptable for married women to contract HIV from their partners than to use an HIV prevention such as PrEP. Also, Talent had to pretend selling wares to her children and community as society stigmatizes sex work since it’s regarded as promiscuity. The negative attitude of the community made it difficult for Talent to disclose her actual profession. It is in this vein that communities need to be sensitized on different HIV prevention strategies which people can take to prevent themselves from acquiring HIV.

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Service Delivery Talent’s further interaction with Precious made her decide to take up PrEP at a local clinic. The clinic was specifically for sex workers which was safe for her. Talent also benefited from being tested for STIs each time she visited the clinic.

Enabling Environment The rigid gender roles in the community where Talent came from acted as huge barrier to accessing health services. Men make most of the decisions without consulting women or any health expert. In this regard, church groups act as barriers to health services yet, these are traditional bastions of support, and most congregants adhere to the church’s regulations. When health programmers fail to work with religious leaders and church groups, such interventions are unlikely to succeed. Talent managed to access PrEP when she was no longer a member of the apostolic sect. However, the church group still has a lot of people who could benefit from using PrEP. If only church leaders would accept health intervention programmes within their sects. Another barrier was that of providing for the family. Talent had to provide for her family as she was not gainfully employed. Though she was selling wares at night the income was not enough to sustain the family. Initially her apostolic background acted as a hindrance for her to uptake PrEP as she had to go to a health service to be initiated on PrEP.

Conclusion PrEP uptake and adherence is problematic from several levels, namely, at individual, community and environmental levels, there is need to develop psychosocial interventions that will support individuals to continue adhering on PrEP. The psychosocial interventions need to address issues to do with beliefs, internalized norms, stigma, and religion in line with the health benefits that a specific intervention like

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PrEP would bring. We recommend multilevel interventions that take into consideration barriers at each level of the socio-ecological model.

References Avert. (2020). HIV and AIDS in Zimbabwe. Retrieved June 1, 2020, from https://www.avert.org/professionals/hiv-around-world/sub-saharan-afr ica/zimbabwe#:~:text=Zimbabwe has a high HIV, men from accessing HIV services. Barnett, T., & Whiteside, A. (2006). AIDS in the twenty-first century: Disease and globalization. Palgrave Macmillan. Campbell, C., & Cornish, F. (2010). Towards a fourth generation of approaches to HIV/AIDS management: Creating contexts for effective community mobilisation. AIDS Care—Psychological and Socio-Medical Aspects of AIDS/HIV, 22(Suppl. 2), 1569–1579. https://doi.org/10.1080/ 09540121.2010.525812. Cowan, F. M., Davey, C., Fearon, E., Mushati, P., Dirawo, J., Chabata, S., Cambiano, V., Napierala, S., Hanisch, D., Wong-Gruenwald, R., Masuka, N., Mabugo, T., Hatzold, K., Mugurungi, O., Busza, J., Phillips, A., & Hargreaves, J. R. (2018). Targeted combination prevention to support female sex workers in Zimbabwe accessing and adhering to antiretrovirals for treatment and prevention of HIV (SAPPH-IRe): A cluster-randomised trial. The Lancet HIV , 5 (8), e417–e426. https://doi.org/10.1016/S23523018(18)30111-5. Duffy, L. (2005). Suffering, shame, and silence: The stigma of HIV/AIDS. Journal of the Association of Nurses in AIDS Care, 16 (1), 13–20. https://doi. org/10.1016/j.jana.2004.11.002. Dwyer-Lindgren, L., Cork, M. A., Sligar, A., Steuben, K. M., Wilson, K. F., Provost, N. R., Mayala, B. K., VanderHeide, J. D., Collison, M. L., Hall, J. B., Biehl, M. H., Carter, A., Frank, T., Douwes-Schultz, D., Burstein, R., Casey, D. C., Deshpande, A., Earl, L., El Bcheraoui, C., … Hay, S. I. (2019). Mapping HIV prevalence in sub-Saharan Africa between 2000 and 2017. Nature, 570 (7760), 189–193. https://doi.org/10.1038/s41586-0191200-9.

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Fauci, A. S. (2007). 25 years of HIV/AIDS science: Reaching the poor with research advances. Cell, 131(3), 429–432. https://doi.org/10.1016/j.cell. 2007.10.019. Fine, M., & Asch, A. (1988). Disability beyond stigma: Social interaction, discrimination, and activism. Sociology, 44, 3–22. Fiske, S. (1998). Stereotyping, prejudice, and discrimination. In D. Gilbert & S. Fiske (Eds.), The handbook of social psychology (2nd ed., pp. 357–411). McGraw Hill. Giger, J. N., Appel, S. J., Davidhizar, R., & Davis, C. (2008). Church and spirituality in the lives of the African American community. Journal of Transcultural Nursing, 19 (4), 375–383. https://doi.org/10.1177/104365960832 2502. Goffman, E. (2009). Stigma: Notes on the Management of Spoiled Identity. Simon and Schuster. Gregson, S., Adamson, S., Papaya, S., Mundondo, J., Nyamukapa, C. A., Mason, P. R., Garnett, G. P., Chandiwana, S. K., Foster, G., & Anderson, R. M. (2007). Impact and process evaluation of integrated community and clinic-based HIV-1 control: A cluster-randomised trial in Eastern Zimbabwe. PLoS Medicine, 4 (3), 545–555. https://doi.org/10.1371/jou rnal.pmed.0040102. Gregson, S., Zhuwan, T., Anderson, R. M., & Chandiwana, K. S. (1999). Apostles and Zionists: The influence of religion on demographic changes in rural Zimbabwe. Population Studies, 53, 179–193. https://doi.org/10.1080/ 00324720308084. Hosek, S., Rudy, B., Landovitz, R., Kapogiannis, B., Siberry, G., Rutledge, B., Liu, N., Brothers, J., Mulligan, K., Zimet, G., Lally, M., Mayer, K. H., Anderson, P., Kiser, J., Rooney, J. F., Wilson, C. M. & Interventions, the A. T. N. (ATN) for H. (2017). An HIV pre-exposure prophylaxis (PrEP) demonstration project and safety study for young MSM. Journal of Acquired Immune Deficiency Syndromes (1999), 74 (1), 21. https://doi.org/10.1097/ QAI.0000000000001179. Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27 (1), 363–385. https://doi.org/10.1146/annurev.soc.27.1.363. Mack, N., Odhiambo, J., Wong, C. M., & Agot, K. (2014). Barriers and facilitators to pre-exposure prophylaxis (PrEP) eligibility screening and ongoing HIV testing among target populations in Bondo and Rarieda, Kenya: Results of a consultation with community stakeholders. BMC Health Services Research, 14 (1), 1–12. https://doi.org/10.1186/1472-6963-14-231.

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Maguranyanga, B. (2011). Apostolic religion, health, and utilization of maternal and child health services in Zimbabwe. malariasite.com. (2020). Malaria and HIV/AIDS title. Retrieved June 1, 2020, from https://www.malariasite.com/malaria-hiv-aids/. Merson, M., Dayton, J., & O’Reilly, K. (2000). Effectiveness of HIV prevention interventions in developing countries. AIDS, 14 (Suppl. 2), S68–S84. Nhamo, M. N. (2011). The role of churches in tackling HIV stigma in eastern Zimbabwe. London School of Economics and Political Science. Oliver, M. (1992). The politics of disablement. Macmillan. Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science and Medicine, 57 (1), 13–24. https://doi.org/10.1016/S0277-9536(02)003 04-0. PrEPwatch. (2020). A snapshot of PrEP scale up. Retrieved June 1, 2020, from https://www.prepwatch.org/resources/#?search=WHO+guidelines. Sallis, J., & Owen, N. (2002). Ecological models of health behavior. In K. Glanz, B. Rimer, & F. Lewis (Eds.), Health behavior and health education: Theory, research, and practice (3rd ed., pp. 462–484). Jossey-Bass. Sayce, L. (1998). Stigma, discrimination and social exclusion: What’s in a word. Mental Health, 7, 331–343. Shapiro, K., & Benatar, S. R. (2005). HIV prevention research and global inequality: Steps towards improved standards of care. Journal of Medical Ethics, 31(1), 39–47. https://doi.org/10.1136/jme.2004.008102. UNAIDS. (2020). Global HIV & AIDS statistics—2019 fact sheet. Retrieved May 25, 2020, from https://www.unaids.org/en/resources/fact-sheet. WHO. (2003). M E N TA L H E A LT H. Retrieved from https://www.who. int/mental_health/media/investing_mnh.pdf. WHO. (2020). HIV/AIDS. Retrieved May 25, 2020, from https://www.who. int/hiv/topics/prep/en/. World Health Organization. (2016). The use of antiretroviral drugs for treating and preventing HIV infection.

6 Sinikithemba Gospel Group and the Grassroots Struggle Against HIV/AIDS Stigma in South Africa Thembela Vokwana

Introduction It is just a little more than three decades now since I first heard of HIV/AIDS. My memory of early encounters with this acronym and its semantic inflections, in the South Africa of the late 1980s, includes the information that it was a disease reported to be not only deadly but also linked to America—the CIA or the FBI. Among my teenage peers AIDS stood for American I deas of Destroying S ex and condoms were viewed as means by which the apartheid government, aided by the US ‘secret services’, aimed to limit the birth rates of Black people. Here, no doubt, the entangled tropes of global geopolitics linked to the raging Cold War and the apartheid’s state apparatus had assumed a local flavour through This chapter benefitted from the constructive and insightful comments of Prof Christine Lucia.

T. Vokwana (B) University of Fort Hare, Eastern Cape, South Africa e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_6

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myths and stereotypes. Further, by ensuring a decline in Black birth rates the apartheid government was assumed to ensure their maximum subjugation to the grip of apartheid. This would presumably help quell the unrest resulting from the relentless struggle for freedom in the mid to late 1980s.1 So we thought. Then had never known a person with HIV/AIDS. Any conspiracy theory about HIV/AIDS could stand for truth. Early in the 1990s pictures of emaciated people with lesions on their faces and skeletal bodies began to proliferate through the magazines in circulation in South Africa: Drum, Bona, True Love, Pace and occasionally Newsweek and the Times. Even then, these were bodies of distant people in faraway places, largely white homosexual males, prostitutes, African women, and children in war torn countries, so the captions and contents informed us. Ubani unamagama… unale nto … ubani usweleke ngenxa yale nto … ubenomkhuhlane ongapheliyo … u(be)ne Z3 … ubulewe ngugawulayo … (So and so has the letters … has this thing … s/he died of this thing … had a very long fever … ha(s)d a Z3 … was killed by AIDS.)2

It was from the mid-1990s that I began to hear the euphemisms above used for people who were ill, had a dramatic weight loss or suddenly fell sick and disappeared from the locale in which they lived, to be nursed by relatives in distant rural areas, far away from prying eyes in the city where I lived. As the media and common conversations deliberated about the trajectory of this disease, the blame for carrying HIV/AIDS began to be projected onto miners, foreign African nationals, and prostitutes. Stories

1 Literature on the social dimensions of HIV/AIDS reveals that these ‘tales’ about HIV/AIDS were in circulation elsewhere in the world in the 1980s. Treichler (1987, pp. 32–33) lists 33 ways in which AIDS has been characterized, and Fassin and Schneider (2003) have developed this theme more recently in South Africa. 2 The ‘letters’ means the acronym HIV/AIDS. The Z3 is the fast BMW sports car and is symbolic of the speed with which HIV/AIDS kills carriers; or Z3 could refer to living a ‘fast life’, a euphemism for promiscuity. The ‘long fever’ refers to the prolonged ‘flu which is symptomatic of the onset of full-blown AIDS. Ugawulayo is a Xhosa noun derived from the root verb—gawula meaning to hack shrubs, fell down a tree or clear up vegetation. The strength of this name for HIV/AIDS lies in its imagery and semantic weight, which suggests a degree of destruction or annihilation.

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of it being closer to home in the mines of Gauteng and in the KwaZuluNatal region also began to emerge.3 Until late in the 1990s, however, I personally never knew anyone who had HIV/AIDS or died of it. Then in 2000, a friend called to tell me that Mxolisi4 had made a confession that ‘unamagama’, he was diagnosed as HIV positive (hereafter HIV+). Even though I was one of his closest friends, I was not supposed to know, and so I was never able to extend a helping hand. I knew nothing of antiretroviral treatment and was only aware of good diet, exercise, and a positive attitude as important in keeping one as healthy as long as possible while living with HIV/AIDS. Although I wanted to help Mxolisi, I was wary of ‘letting out the secret’. Soon afterwards, he went back to his parents in a village in the Eastern Cape, leaving the friends he had lived with in the cities speculating about his whereabouts. I was distressed at my inability to extend even a single word of comfort and support. A few months later, Mxolisi passed on. He was in his late twenties. He became a statistic and possibly a subject of further gossip, and joined many who died and continue to die in similar circumstances: alone, hidden away, and deeply troubled by stigma, shame, and denial. From then on, I was privy to numerous rumours, some malicious, about people with ‘this thing’, about their varied and rather disturbing reactions to being HIV+. I was to learn of families who would take their next of kin in and out of hospitals to traditional and faith healers to deal with isidliso, and would give them copious amounts of isiwasho, until they died.5 HIV/AIDS had become the disease which no one dared to 3

Cameron (2005, p. 52) relates how in 1986 the Chamber of Mines announced the results of blood samples of 300,000 miners, 800 of whom were found HIV+. 760 were from Malawi. These workers were summarily deported and at the beginning of 1988, their contracts were not renewed. This may have been the basis for the projection of AIDS to miners and Africans from elsewhere in the continent. See also Marks (2002) especially pp.16–18. 4 Name altered for ethical reasons. 5 Isidliso or Idliso (in IsiZulu and IsiXhosa, respectively) refers to a poisonous portion assumed to be mixed into someone’s food and swallowed during a meal in order to kill them or have some psychological control over them. Also, magic and sorcery are the agents by which one is made to ingest such portions without even physically eating them. (See Ashcroft [2002] for a more detailed discussion of some of these perspectives.) Isiwasho is a mixture of water and herbs or other concoctions that are used to cleanse one of the evil spirits or ill-luck often associated with a spell cast upon an individual.

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name, not at funerals or public gatherings and perhaps not even in the privacy of the family. Silence and non-disclosure underscored the subtext that HIV/AIDS translated to the shame of promiscuity or witchcraft, the consequences of which were the punishment of rapid wasting, a long, painful illness, and death. Using these anecdotes as I remember them from the past, I enter into a discussion of how HIV/AIDS has not only been known through official biomedical information and epidemiological data, but also gleaned from mythical discourses foundational to the production of stigma, denial, and shame. In the next section, I focus on the constitutive power of these discursive practices in great detail.

HIV/AIDS Discourse and the Production of Stigma and Denial AIDS is stigma disgrace discrimination hatred hardship abandonment isolation exclusion prohibition persecution poverty privation. AIDS is a metaphor. It is a threat a tragedy a blight a blot a scar a stain a plague a scourge a pestilence a demon, killer rampant rampaging murderer. It is made moral. It is condemnation deterrence retribution punishment, a sin a lesson a curse a rebuke judgment. It is a disease (Cameron, 2005, p. 42)

Discourses about HIV/AIDS filter down to the general population through the authoritative power structures of religion, medicine, government, media, to constitute ‘common knowledge’. In turn this received knowledge has an effect on the language around HIV/AIDS and overall attitudes towards treatment of those living with HIV/AIDS. Negative language about HIV/AIDS circulates through an intricate web of mixed and often ‘condemning’ linguistic practices linked to social prejudice and stereotyping, as the quotation from Edwin Cameron illustrates. Such knowledge begins its journey, however as the more ‘neutral’ discourse of science, as in ‘HIV causes AIDS primarily [by] destroying the body’s immune system’ (Nattrass, 2007, p. 18), and there

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is an increasingly complex biomedical jargon—antibodies, CD4+ T-cells, ribonucleic acid (RNA), deoxyribonucleic acid (DNA), reverse transcriptase, and enzymes—to explain this process (Barnett & Whiteside, 2002, p. 30; Nattrass, 2007, pp. 15–22). This biochemical language of invisible chemical processes in the body has no negative connotations.6 However, as Steven Epstein has shown, a complex contestation of scientific views lies behind the creation of authoritative knowledge, establishing some voices as authoritative and others as dissident in the ‘credibility struggles’ (Epstein, 1996, p. 3). Epidemiological research and speculation about conditions at the source of the disease as well as its trajectory and spread, are of media interest, and ‘purely scientific’ data gets enmeshed with an intricate web of power, ideology, and politics, leading to what Paul Farmer (1992) has called the ‘geography of blame’.7 People with HIV/AIDS are homosexual males or intravenous drug users, immigrants, and prostitutes who must all be quarantined from ‘normal’ society; the disease is Haitian in origin if the discourse emanates from North America, Black African if from Euro-America, and continental African if from South Africa. In the early days of HIV/AIDS the American media was awash with unverified stories of the link between voodoo practices and the spread of HIV/AIDS (Farmer, 1992). Paula Treichler (1987), Adam Ashcroft (2002), Edwin Cameron (2005), and Adam Levin (2005) have all written about the association of HIV/AIDS with witchcraft, addiction to intravenous drugs, (homo) sexuality, and reckless sexual activity. Witchcraft receives a cogent and insightful engagement in South Africa from the research of Johnny Steinberg (2008) and Joanne Wreford (2008). After a series of conversations about HIV/AIDS in Lusikisiki in the Eastern Cape, Steinberg deduced that 6

Vokwana (2002), also discusses varieties of discursive processes framing knowledge about HIV/AIDS. These emanate from markedly different interest groups but collectively concretize attitudes and actions directed at those affected and infected. For this reason, discourse, stigma, denial enmesh in ways that require untangling and interrogation. 7 The spatial projection of disease on the ‘Other’, has well documented historical antecedents. Susan Sontag (1990) speaks of the ‘link between imagining disease and imagining foreignness’ (136) wherein ‘[o]ne feature of the usual script for plague … [is that] the disease invariably comes from somewhere else’ (135): syphilis in fifteenth-century England was the ‘French Pox’, while in Japan it was the ‘Chinese disease’.

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[T]hose who speak of the shame of the HIV-positive are a hair’s breadth from speaking of the shame of witches. Like the witch, the HIV-positive woman has a sexual appetite, and again like the witch, her sexual appetite is murderous. As much as people try to strip AIDS of evil by giving it a strictly biomedical explanation, it nonetheless remains lodged in an old and poisonous well of fear, of suspicion, and of misogyny. (133)

The cumulative effect of such common talk is denial of the ‘neutral’ medical condition: Perhaps worse than many of its other features, more puzzling, less tractable, and besides complicating everything else, AIDS is also shame. Shame – the humiliation or distress that arises from self-knowledge of dishonour or offence or impropriety or indecency. (Cameron, 2005, p. 45)

The stigma associated with the disease results in the silence that serves to exacerbate the condition. ‘Stigma is perhaps the greatest dread of those who live with AIDS and HIV – greater to many even than the fear of a disfiguring, agonizing and protracted death’ (Cameron, 2005, p. 53). Liz McGregor (2007) throws further light on this grim picture through the story of Fana Khaba, once a popular radio DJ from South Africa whose response to his HIV/AIDS status vacillated between acceptance and refusal to take antiretroviral drugs. Various commentators on the AIDS story have noted how those in power, especially policy formulators in government (including former South African health minister Dr Manto Tshabalala-Msimang and former President Thabo Mbeki) are also lost in the maze of negative discourses about HIV/AIDS,8 as are, on various levels of power, some religious communities, and profiteering pharmaceutical companies. Arnau van Wyngaard (2006) reveals the Christian Church’s implication in the exacerbation of the HIV/AIDS

8

Barnett and Whiteside (2002), Schneider (2002), Mbali (2001, 2004), and Nattrass (2007) provide nuanced discussions of this theme.

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problem in Sub-Saharan Africa through its insistence on the relationship between HIV/AIDS and sin.9 I argue here that an appeal to medico-scientific knowledge alone is insufficient, nor is the increasing amount of good information available because it is in the social and infrastructural aspects of HIV/AIDS as mediated through negative discursive acts—at grassroots level—that intervention is still needed.

Music Performance and HIV/AIDS Stigma and Denial: Exploring the Intersections The name AIDS in part constructs the disease and helps make it intelligible. We cannot therefore look “through” language to determine what AIDS “really” is. Rather we must explore the site where such determination really occurs and intervene at the point where meaning is created: in language. (Treichler, 1987, p. 31)

Here I extend Treichler’s notion of ‘language’ in order to investigate the production of counter-discursive practices in the film IThemba/Hope (2004). This documentary charts the Sinikithemba Gospel Group’s preparations for and appearance at the 10th Conference on Retroviruses and Opportunistic Infection in Boston, USA, in 2003. This group was formed in the Sinikithemba Clinic and a leading member is Zinhle Thabethe, a patient who was brought to the clinic presenting advanced symptoms of HIV/AIDS. I argue that the film uses dialogue, music, lyrics, and performance techniques in order to communicate positive messages about HIV/AIDS, raise public awareness of the condition, and create a platform for the support of both the infected and the affected (friends and relations). In my description and analysis of this film, in which I have transcribed selected dialogue and song texts, I

9

Van Wyngaard (2006) cites the work of van der Walt (2004) to highlight how the church has insisted on the linkage between HIV and Sin. This combination suggests that those who are HIV+ have committed sinful acts against God.

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focus on text more than music, but the context of music is the overriding framework for actors and audience in the film. Through CDA I aim to show how singular discursive acts—words, phrases, song lyrics— provide a counter-narrative to the negative discourse about HIV/AIDS outlined in my Introduction, and offer a potentially empowering model for intervention. While drama and the visual arts have been studied as cultural interventions (Dalrymple, 1995; Marschall, 2002; Parker, 1994), music scholarship has given more attention to music as a communal response to HIV/AIDS (Barz, 2006; Bourgault, 2003; McNeill & James, 2008). Through a comparative study of performance cultures in Mali and South Africa Louise Bourgault, for example, proposes that the transference of the ritualistic elements in orature, drama, and music can significantly help to curb the spread of HIV/AIDS in traditional communities. However, her conception of community seems to suggest an organic, almost unchanging traditional community with minimal internal contradictions, and South Africa’s sprawling townships are volatile areas where social cohesion is highly complex due to (among other things) migration, cultural diversity, and economic disparities. Her work, as well as that of Barz and James/McNeill, pays attention mostly to traditional musical forms, moreover, and one wonders how their model would work when popular music is used to achieve similar ends. The case of the Sinikithemba Choir’s repertoire and the social make-up of the group, as well as their location in a township on the outskirts of a large city, Durban, is somewhat different. A pioneering study by Gregory Barz (2006) based in Uganda shows the development of grassroots performance groups that have taken upon themselves to communicate awareness about HIV/AIDS, and the manner and extent to which knowledge about AIDS is indigenized and made comprehensible to locals. McNeill and James (2008) offer a more critical view of music’s grassroots engagement with HIV/AIDS. Through an ethnographically grounded study in Venda, they argue that the ‘awareness’ performances of peer educators,

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mostly young females, are viewed with cynicism in a context of generational restraint and skewed gender relations.10 Vokwana (2014) develops a more extensive discussion examining two performance sites captured in documentary video to highlight the role of music performance, festivals, and collaboration as terrains of engaging the politics of access to HIV/AIDS medication, destigmatizing HIV/AIDS and encouraging positive living beyond just awareness about the disease. In the next section, I focus on the case of Sinikithemba, a gospel choir from Durban and its efforts at self-representation in trying to access antiretroviral treatment. The central figure in the presentation is Zinhle, a singer in the choir and a volunteer worker at Sinikithemba clinic. In addition to examining the activities of the choir at large, I also observe her agency in undoing the stigma and denial associated with being HIV positive. In this way, I attempt to show how a discourse of positive living and acceptance works in tandem with access to treatment as a mechanism to ameliorate the often devastating effects of a HIV+ status.

Agency and Grassroots Performance: The Case of Sinikithemba The clinic is known as Sinikithemba. The choir is known as Sinikithemba, which means ‘Somebody who gives hope’ or ‘We give hope’ [in IsiZulu]. And the choir members, the common factor is they’re HIV positive. (Mrs Mhlongo, Director of Sinikithemba Clinic) When you are in Sinikithemba, you are free to talk about anything and everything to the people that speak your language … And they also had this music project that was going on. That was even more cool, because 10

Zwilombe guitar songs performed largely by men and older initiated females mediate messages that counter the awareness agenda, labelling peer educators ‘vectors of the virus’ who, James and McNeill suggest, are ‘a threat to fertility’ and this ‘places them at the heart of a perceived crisis of social and sexual reproduction in the region’ (3). While not directly linked to music and HIV/AIDS performance, literature on the relationship between music and activism or social movements also adds an insightful dimension to the topic, in particular the work of Rebee Garofalo (1992) and Ron Eyerman and Andrew Jamison (1998).

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I love music. So I said, this is what I’m going to be doing. I will hang out here all the time. (Zinhle Thabethe, counsellor and choir member at Sinikithemba Clinic)

IThemba/Hope is a film of approximately 1 hour that can be divided into three sections: the preparation of the Sinikithemba Gospel Group under its conductor, Phumlani Kunene to perform in Boston (the longest section); the performance of the choir in the USA; and the depiction of people taking an HIV test after the choir’s return to Durban. The narrative closely follows the story of one choir member, Zinhle Thabethe, and section one begins in the venue used for the choir’s rehearsals, an office space at the Sinikithemba Clinic. Other venues shown in the film are McCord Hospital and St Anne’s Clinic (Durban), and the conference venue in Boston. Zinhle’s journey from diagnosis, denial, and decline to near-death status, to her return to life through antiretroviral treatment is the backbone of the film, interspersed with eight ‘black box’ screens that reflect on Zinhle’s narrative and provide additional data on current realities about HIV/AIDS, scenes of the choir’s preparations for the conference, and comments by other role players such as Mrs Nonhlanhla Mhlongo, Director of Sinikithemba Clinic. Images of Zinhle’s neighbourhood are also shown, depicting the poor socio-economic conditions in which her family and fellow choristers live. In my summary of the film’s narrative, which is too long to give in full, I show cuts by means of square brackets [ ]. The film begins with a black screen that says: • This film takes place in KwaZulu-Natal, South Africa.11 • 5.3 million people in South Africa have HIV, more than any other country in the world. • In the province of KwaZulu-Natal, 36% of the adult population is HIV+. Treatment and basic medical care remain scarce.

11 The English translations of song-texts in isiZulu are mine. However, as the film is in isiZulu, a language some viewers might not understand, it is then subtitled.

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Opening credits follow. As they fade, we are in the practice room at Sinikithemba clinic where a group of twenty or so people is rehearsing a gospel song. The group is largely female, and gender is to become an important undercurrent in the film, as are self-esteem and pride in the body.12 The choir director, Phumlani, one of the few men, often leads songs, cues choir entries, and gives direction to the expression. The singing is always a cappella. In a slow, homophonic style, they begin (in English): ‘This little light of mine/I’m gonna let it shine/I won’t let Satan blow it out/I’m gonna let it shine’. Then Phumlani leads with a more highly pitched voice and the song assumes an upbeat tempo, the choir fervently responds. Choreographed movements, uniformly presented, underscore the song’s energy: [Solo:] ‘This little light of mine/God gave me the light/ [Chorus:] Every day let my light shine’. The song highlights the positive attitude and the resilience of the singers, as the scene shifts to a panoramic view of Zinhle’s neighbourhood in Umlazi Township, a collection of small mud or concrete houses set against sloping terrain, and one begins to fathom the extent of the difficulty of access to health care in this area. A front view of Zinhle’s house appears. The camera zooms inside to show Zinhle’s mother, Elaine in the kitchen, a small space whose meagre furnishings illuminate the family’s stringent economic realities. The next scene shows Zinhle teaching volunteers at St Anne’s clinic. Zinhle: One of three moms … is HIV positive. … So that brings us into realizing it’s a very critical issue. Back home, an alarm clock wakes Zinhle up and she follows her daily routine of treatment and readying herself for work. In a series of monologues in close-up, she discusses her journey with HIV/AIDS, describing her initial denial of her diagnosis: ‘That’s a joke’, she remembers thinking, ‘I don’t have time to listen to that’. A black box states: 12

HIV/AIDS support groups are often female-driven; see Soskolne et al. (2003) on this aspect of HIV/AIDS support in another site, Khayelitsha Township, Cape Town.

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• The Sinikithemba Choir is made up of 30 HIV+ members of the clinic’s support group. The clinic provides HIV education, counselling, basic medical care and job training to Durban and the surrounding townships. • The choir is preparing to perform at an international HIV/AIDS conference in Boston. • The choir’s US performances are part of a broader appeal for assistance in providing medication for HIV+ people in their community. The choir is heard singing in the background as Mrs Mhlongo appears. She opens packages with the choir’s uniforms in her office. Mrs Mhlongo: The clinic is known as Sinikithemba. The choir is known as Sinikithemba, which means ‘Somebody who gives hope’ or ‘We give hope’. And the choir members, the common factor is they’re HIV positive. They are not only singing for themselves, but they are singing for the person who is dying in the rural area without anyone. Mrs Mhlongo’s commentary brings to the fore the lonely death of people like my friend Mxolisi and highlights, by contrast, the collaborative aspect of music in this film. Phumlani leads another song: Abanye bayokhala Abanye bayojabula Abanye bayoqheliswa Imiqhele yokunqoba.

Some will cry Others will rejoice They will be crowned With crowns of victory.

As Zinhle’s narrative continues, she says at one point: Zinhle: [ ] There is a lady that just called me, and she is worried that her CD4 count is getting low, so she is so scared, and I had to assure her that whatever we’re going to do in Boston can be the key for her to get medication, which is important. Back in the rehearsal room, Zinhle leads a song in evocative Zulu traditional style, the choir responds:

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Izizwe azihlome bo nas’isifo sihlasela Izizwe azihlome nal’igciwane lihlasela Izizwe azihlome nang’ubhubhane uhlasela Zingahlomi ngemikhonto bo Zihlome ngolwazi lokuvikel’kufa.

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All nations must take up arms Here is a disease attacking All nations must take up arms Here is a virus attacking All nations must take up arms A scourge is attacking They must not be armed with spears Rather with knowledge to prevent death.

Zinhle finds it easy to also draw upon gospel as she ‘grew up singing gospel music. I’m a very energetic somebody. I dance a lot, and I sing a lot. I’m not a person who likes to stay in the room’. The shot reverts back to Zinhle with her sister, Sithandiwe, and her mother, Elaine talking about their fears during her illness, after which a black screen says: • Within five months of testing positive for HIV, Zinhle’s condition deteriorated to end stage AIDS. Zinhle continues: I didn’t think there was going to be a tomorrow for me. And this lady, who is Phumlani’s neighbour, she is a social worker. She told me there will be a programme where they will be offering treatment to people that has got AIDS in Umlazi. And she said, “You should go there”. She took me [to Sinikithemba Clinic]. She decided to be so dedicated. She was taking me up and down to this clinic every time she could come, carry me from my mom’s hill on her back, take me to her car, take me to the clinic and bring me back.

To underscore the social worker’s struggle and heroism, the scene shifts to a narrow, winding path going uphill and downhill through overgrown grass and dilapidated mud houses. Zinhle recalls: Sometimes I think, “Why am I doing this?” Because I’m too thin. People will say, “What is a skeleton doing on the road?” And my mom says,

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“You don’t have to go there. When you get better you will”. And I said to her I probably don’t have much time…so if I don’t do it now, I might not do it.

The next black screen explains: • With the social worker’s help, Zinhle became one of 50 people participating in a scientific study that provides free antiretroviral (ARV) medication. • Antiretroviral medication is the only treatment proven effective against HIV/AIDS. The high cost of ARVs prevents most South Africans from accessing treatment. Zinhle is the only choir member receiving ARV treatment. Zinhle puts it in her own social context: This woman gave me … a gift of life. She gave me a second chance. She helped me a lot without asking for a penny. So I owed some people some help. I volunteered in the clinic. I teach in the support group, and also I am a support group member. There is a Zulu saying that says: ‘Umuntu, ngumuntu, ngabantu’, which means a person is a person because of other people. People should be able to ask for help. That doesn’t tax your pride.

With a group of fellow choristers in what seems like a rehearsal room during recess, Zinhle and other members talk excitedly, anticipating their trip to the USA. The mixture of concern about mundane things like weather and clothing, and significant things like the lack of medication, is poignant. Zinhle: [ ] Since there is no medication at the moment, the kind of thing that keeps us going and keeps us together all the time is to learn and teach and to be able to give hope to each other. [ ]. Back in the rehearsal room Phumlani cues the choir to start a song. The attempt fails; they sing in discord Zinhle continues her narrative:

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When you are in Sinikithemba, you are free to talk about anything and everything to the people that speak your language. So that was a very cool thing. And they also had this music project that was going on. That was even more cool, because I love music. So I said, this is what I’m going to be doing. I will hang out here all the time. I will come sing. And I will help those who still need some help here.

Another scene of the choir, rehearsing ‘UJes’umongameli wethu’ (Jesus is our guide), then scenes of Mrs Mhlongo showing the progress of making the choir uniforms, during which Zinhle describes her thus: Zinhle: She’s the one who knows exactly the idea of Sinikithemba. She knows us, she knows each and every choir member. [ ] She knows us beyond our sickness. She’s a mom. She’s our mother. Helpers in societies such as Zinhle’s are often constructed as surrogate mothers, especially when individuals are rejected by their own families. Because Mrs Mhlongo ‘knows everything’ and is seen as the authority, it becomes all the more critical when, later on, she is unable to speak at the conference because of a visa problem. Zinhle leads the choir in the song ‘Unity, unity, unity South Africa’. The choir in the background continues to sing: ‘Unity is power, Waze wamuhle Jehova’ (O Jehova, how wonderful you are) as Mrs Mhlongo explains their ‘awareness-raising’ mission in Boston. In the hospital grounds, clad in a blue and white floral dress and a white coat, Zinhle walks and chats to her mentor Dr Krista Dong, an American health officer from Partners AIDS Research Center in Massachusetts, who ‘came to South Africa to open an HIV clinic and also to conduct a study that would offer treatment to the babies’ (Zinhle). In a hospital lecture theatre, Krista explains to a group of trainees that ‘everybody who is positive doesn’t need anti-retrovirals. You need those when you become sick. But there is a long process of about five to six years that occurs from the time you get infected to the time you’re sick, and that’s the wonderful time to intervene’. Zinhle suggests to her brothers, Richard and Bongani that they go for testing. Richard fears not only the result but the cost of treatment:

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‘I haven’t got money. No money. Treatment is too expensive’. The scene fades and the choir in rehearsal appears again, Phumlani, leading a gospel song in English: ‘Yes, yes, yes my Lord / Yes I will praise you Lord / Oh we ought to praise you Lord …’. Next we see Zihnle talking about her daughter, Sinenhlanhla: I always thought she’s also HIV positive and I didn’t even want to test her. [ ] I don’t know whether it’s by mercy of God or what. She turned to be negative on two tests. So that was the amazing thing I could ever hear. Those were good news. I felt like standing on the tallest building and telling everyone my daughter is HIV negative.

Zinhle continues with her narrative of slow recovery after beginning to take ARVs, while black screens tell us about the risk of mother-tochild transmission and how ARVS work. The film constantly reinforces the importance of Zinhle’s taking her medicine, ‘coming back to life’, being actively involved in helping others, ensuring that one stays healthy, and finding money to make ARV treatment available for everyone. As the choir continues with its rehearsal, a shot of an aircraft speeding on the Durban International Airport’s runway and lifting off to the sky is shown.

Sinikithemba Abroad and then Back Home in Durban Section two of IThemba/Hope opens with the choir walking towards the carousel at JFK and picking up their luggage. The first drama of arrival is that Mrs Mhlongo is turned back at JF Kennedy Airport, because she does not have a return visa. She was scheduled to give the keynote address, and now an alternative person has to be found. The choir is distraught. Zinhle is chosen as the next most suitable person to give the keynote, and she anxiously rehearses it with Krista. Sitting on her bed and in a close-up shot, facing the camera:

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We chatted with that lady that is organizing the conference, how important to me it was, it is to be here. It’s like a dream that someone has saved my life that I don’t even know. The people that will be sitting in that conference, probably one of those people who have saved my life, because when I got very sick, there was nothing that could help me except for those drugs. [ ] My mission is just to do whatever it takes to help someone get the chance I got. Because I am here because somebody helped me. So that’s why they got to choose me to speak. [ ] As much as I don’t know now what I will say. It’s a bit scary.

She then reads part of her speech: Zinhle: ‘And to President Clinton who has committed himself to fighting against the AIDS epidemic. I am honoured to share the stage with you’ … I love that. This is an important moment for Zinhle. Not only does she get the honour to address an auspicious audience including then US President, Bill Clinton, she also takes the responsibility of representing others, back at home, who might receive treatment through her speech. In the next shot the choir is backstage ready to perform. Zinhle and Krista go over the rehearsal of the speech for the last time. Then the choir walks centre stage while she stands at the podium to deliver her speech. As she reads the speech, various shots of the audience appear, shifting from closeups of attentive faces to sweeping views of the auditorium in which the speech is delivered. The speech summarizes her purpose of the trip to Boston, namely, to solicit medication for the group and many other underprivileged South Africans with no means to afford ARV treatment. I want to thank the conference organisers for giving Sinikithemba choir the opportunity to be here with you tonight, and share our voices, our music with you. My name is Zinhle. [ ] Like the members of Sinikithemba choir, I am HIV positive. But ten months ago, I became different than most of the people at Sinikithemba. I got on a pilot study that provides antiretroviral drugs. I am done asking myself, “Why me? Why did I have to be infected with HIV?” Now I ask myself, “Why me?

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And why do I get to live while others next to me are dying without treatment?” Some people say there are things more urgent that we need to take care of, before HIV/AIDS. Things like poverty, things like crime, unemployment, violence, diseases like TB, malaria, diarrheal diseases. I am from a poor family. When I was at my most sick, I was living with my mother, with my two sisters, and their four children. Our house had no electricity and had no running water. Well, some people say that really poor countries should not get anti-retroviral drugs. They say poor people, uneducated people, will not be able to be adherent. But I am adherent to my ARVs. I can tell you that ever since I started medication in April, I have never missed a dose ever.

[Applause] So what can I, as one of HIV positive persons, and we, as the Sinikithemba choir say to you? Well, we want to say thank you. Thank you very much for the job that you have done so far. …Thank you in advance for the job that you are still going to do. The word Sinikithemba means, “Give us hope”. [ ] You give us hope that we will one day, or someday have treatment that will save our lives.

Zinhle finishes her speech in tears while the audience gives her a standing ovation. She then leads the choir in ‘O Jehova, Qhaw’elikhulu’ (O Jehovah, great hero). Images of the choir performing are interspersed with shots of Bill Clinton backstage after the performance. Projected on the black screen: • Shortly after the performance, an anonymous donor provided ARVs to all the members of the choir in need of treatment. Back home in Umlazi, Zinhle is shown in a car accompanying her three brothers, Bongani, Richard, and Thembinkosi to take an HIV test. A black screen informs us: • After returning from Boston, Zinhle convinces her brothers to go with her to Sinikithemba clinic to be tested for HIV. • Bongani receives his latest results.

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• Bongani and Thembinkosi both test positive for HIV. Richard’s test results are negative. Zinhle remains the only one in the family receiving treatment. At this point, the film ends and closing credits appear alongside a clip of the choir in yet another rehearsal session. In this shot, the traditional Zulu song ‘Tshitshi lam’ (My girl) is vibrantly and energetically sung with dancers breaking into rhythmically charged steps. Awe kanjani amabel’ejongosi? Okush’ukuthi sel’phuma kanje We tshitshi lami Awusho ngani ma’usuphuma kanje? Awe kanjani amabel’ejongosi? Okush’ukuthi sel’phuma kanje.

How have a virgin’s breasts sagged?13 She now has clandestine affairs My beloved Why haven’t you told me of the affair? How have a virgin’s breasts sagged? She now has clandestine affairs.

The closing sequence is accompanied by a song that problematically reverts to propagating traditional notions of female ‘respectability’: girls’ virginity at all costs, by implication excluding males from a similar responsibility. Yet at another level, the song encourages faithfulness and cautions against the practice of multiple partners well documented as linked to the spread of HIV/AIDS (Leclerc-Madlala, 2000; Motsemme, 2007).

Towards an ‘HIV+ Society’: The Interventive Nature of Music Performance Having attempted to represent the film’s content in writing as a backdrop for my analysis, the pertinent question is: how do we read this film? Fairclough instructs us that as a methodology, CDA ‘foregrounds 13

In some African communities (certainly in the Zulu tradition) firm, pointed breasts symbolize virginity, and thus purity. Sagging breasts on the other hand signify the opposite; that a young girl is involved in sustained sexual activities, something regarded as taboo by elders in particular.

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links between social practice and language, and the systematic investigation of connections between the nature of social processes and properties of language texts’ and proposes an ‘interpretation of the relationship between the (productive and interpretative) discursive processes and the text’ (1995, p. 96), in which the analyst begins to probe the conditions of the production and reception of the text, and its intention, since an ‘explanation of the relationship between the discursive processes and the social processes’ (97) is also significant. For Hilary Janks, too, paying attention to textual data, be it linguistic, visual, gestural, or sonic, ‘enables analysts to focus on the signifiers that make up the text … their juxtapositioning, their sequencing, their layout’ (2005, p. 100), and she cautions against paying attention only on the ‘raw’ text. As a theoretical and methodological pursuit, CDA is also noted for its decidedly political leanings. As Teun Van Dijk puts it, the methodology must at all times be driven by the need ‘to [not only] understand, [but] expose, and ultimately resist social inequality’ (2001, p. 352). Fairclough reminds us that CDA ‘has an emancipatory, “knowledge interest”’ (2001, p. 29), while Ruth Wodak describes CDA as being ‘emancipatory and socially critical’, with scholars interested in this methodology allying themselves ‘with those who suffer political and social injustice’ (1999, p. 8). For Fairclough, the critical goal in discourse analysis is to identify links between ‘micro’ elements (the discursive acts) and ‘macro’ structures (the social conditions of the production and reception of discourse). Foucault (1972, 1980, 1987) provides a valuable basis for understanding the relationship between languange, knowledge, ideology and power. To understand discourse and its effects and how critical discourse analysis is important to untangle these relationships and subject them to scrutiny; one needs to also engage Foucault’s work in an indepth manner. In Table 6.1, I present selected discursive acts in the middle column, together with the name of the person who utters them in the left column. I keep to the chronological order of their appearance in the film, so that the discursive acts can also be read in the context of their vertical juxtaposition. In the right-hand column, I attempt to capture what each utterance in the middle column signifies as a counter-discursive act. I am mindful of the limitations of my approach: that the whole narrative of the film has already been edited by the film-maker, that its intention and

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Table 6.1 Examples of counter-discursive acts in IThemba and their signification Speaker

Discursive act

Signification

1. Choir

[Song] This little light of mine/I’m gonna let it shine One, two, three: that mom is HIV positive. So that brings us into realizing it’s a very critical issue There is a lady that just called me … she is so scared … I had to assure her whatever we’re going to do in Boston can be the key for her to get medication [Song] All nations must take up arms/Here is a virus attacking/They must not be armed with spears/Rather with knowledge to prevent death Sinikithemba, which means ‘Somebody who gives hope’ or ‘We give hope’ … They are not only singing for themselves, but they are singing for the person who is dying in the rural area without hope [Song] Some will cry/Others will rejoice/Yet others will be crowned with victory

Resilience and daily resolve of singers. Transcendental power of music Foregrounding of gender, the rate and burden of mother-to-child transmission

2. Zinhle

3. Zinhle

4. Choir

5. Mrs Mhlongo

6. Choir

Collaborative nature of care and support

Awareness and advocacy

Collaborative nature of care and support. Group singing as an antidote even for those afar and living in fear

Inequality: differences in access to care and support

(continued)

the social conditions of its production and reception partly determine what is said—that the web of ideologies in South Africa underscores the need for the choir to attend the conference in Boston, for example,

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Table 6.1 (continued) Speaker

Discursive act

Signification

7. Zinhle

She gave me a second chance. She helped me a lot without asking for a penny. Umuntu, ngumuntu, ngabantu We want scientists and other people to put face on people who are HIV positive. … So I owed some people some help. I volunteered in the clinic One of the missions I have … is to prove I could do it, then the next person could do it. I think I am a normal person Sometimes I think, ‘Why am I doing this?’ Because I’m too thin. People will say, ‘What is a skeleton doing on the road?’ ‘Look, I’m fat now’. I do see people that are, were like me, people that did not know whether they were coming or going If people can see that if I have been through that much of opportunistic infection, and go better because of my intervention, and also because of treatment’s intervention, they can do it

Strong sense of shared humanity

8. Zinhle

9. Zinhle

10. Zinhle

11. Zinhle

Advocacy for humanizing HIV/AIDS statistical data. Advantage of grassroots activism over political meddling

Personal testimony to make AIDS normal. Self-empowerment thereby empowering others

Binary oppositions of frailty/strength, ignorance/ knowledge, direction/lack of direction. Emphasis on acts of physical and emotional transformation

Personal testimony as evidence of the efficacy of treatment

(continued)

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Table 6.1 (continued) Speaker

Discursive act

Signification

12. Zinhle

After starting anti-retrovirals … I noticed … I could walk faster … Just maybe a month of taking anti-retrovirals, I got fat, because I could eat. That was fantastic. I really loved it. I ate everything, ate anytime. So I gained weight. … I could walk, I could sing, I got fat. I felt I’ve got energy I haven’t got money, no money. Treatment is too expensive [Song] Unity, unity, unity ma Africa

Normalizing life with HIV/AIDS: speed, weight, self-empowerment. Emphasis on the ordinariness of HIV+ life. Having the energy to sing

13. Richard

14. Choir

15. Zinhle

16. Choir

Now I ask myself … why do I get to live while others next to me are dying without treatment … I am from a poor family … well some people say that really poor countries should not get anti-retroviral drugs. They say poor people, uneducated, will not be able to be adherent. But I am adherent to my ARVs … I have never missed a dose, ever [Song] How have a virgin’s breasts sagged?/ She now has clandestine affairs./ My beloved/Why haven’t you told of the affair?

Political economy of treatment

Invocation of a ‘Struggle’song/ toyi-toyi/umzabalazo encouraging collaboration Political economy of treatment. Responsibility for one’s own health and one’s treatment. Own agency in altering attitudes for or against the roll out of treatment

Reversion to traditional gender practices to safeguard women from practices which render them more vulnerable to contracting HIV/AIDS

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and that the medium allows for the release of the discourse’s emancipatory power but far less so its critical potential. But the unequal power relationship between actors and film director and between well-endowed Americans and a poor Zulu choir also provides potential markers of the relationship between discursive processes and social processes. Zinhle, the main player in the film, is represented by nine discursive acts: 2, 3, 7, 8, 9, 10, 11, 12, and 15, the choir by five acts: 1, 4, 6, 14, and 16 (representing five out of the nine songs they sing in the film), and Richard and Mrs Mhlongo by one each: 13 and 5, respectively. Embedded in their discursive acts, I suggest, are six main counter-discourses: (a) Affirmation of the (female) body, (b) Collaboration to normalize HIV/AIDS, (c) Transformation of identity, (d) Political economy of treatment, (e) Invocation of ‘The Struggle’, and (f ) Resistance and hope. These are not mutually exclusive themes and more than one can apply to each box, nor do they appear chronologically as I have listed them here. I have separated, arranged, and even edited them simply for the purpose of CDA.

(a) Affirmation of the (Female) Body Affirmation of the body is clearly linked to advocacy for treatment and the politics of gender. When Zinhle says, ‘One, two, three: that mom is HIV positive’ she is bringing attention to women as mothers and bearers of the responsibility for mother-to-child transmission. When she says, ‘So that brings us into realizing it’s a very critical issue’, she removes the issue from the personal and the politics of blame towards the statistical and the politics of treatment, highlighting m-t-c transmission. When she says, ‘There is a lady that just called me, she is so scared’ she is drawing attention to the individual female woman in need, emphasizing the collaborative nature of care and support. Aware that there are many people with similar fears, she says that ‘whatever we’re going to do in Boston can be the key for her to get medication’. As a caregiver herself, now, Zinhle’s role is to keep the hope of treatment alive for others. The context of this is quite complex as various scholars have shown (Leclerc-Madlala, 2001; McNeill & James, 2008; Motsemme, 2007).

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Women are most vulnerable in HIV/AIDS transmission. This is a consequence of them frequently being victimized as recipients of ‘free gifts’ in transactional sexual activities that render them powerless, subjected to sustained male control. As Nthabiseng Motsemme (2007) indicates, most women agree to not using protection for fear of violation or losing the spouse from whom a means of living is vital or as a way of proving their worth and their love. Somewhat related to Motsemme’s observation, there exists a ‘common-talk’ view that conflates promiscuity with HIV/AIDS (Watney, 1994, p. 19). As a direct consequences, stigma and violence occasionally attend disclosure. Yet again women bear the brunt of infection as they are often made to carry the guilt, forced into abstinence, thus curtailing their sexual pleasure and an array of their other positive, self-asserting attributes. Katie Hogan (1998, p. 168) decries the fact that oftentimes, ‘a traditional idea of “woman” is used to reinforce traditional gender stereotypes’ and that women’s actual experiences and needs are placed within such a stereotyped notion of femininity. In this problematic setting, the role of a woman is mostly that of child bearing hence protective measures such as condom usage are viewed with disdain. In traditional contexts, virginity is a central concept and it usually means female virginity only, specifically among teenage girls. The body receives ambiguous consideration in ‘Tshitshi lam’ where the lyrics imply that (only) the female body is responsible for being impregnated, and for faithfulness. But when the Sinikithemba choir sings indlamu style song with great joy at the end of the film, it carries a second, hidden message. Karin Barber (1997, p. 97) has drawn attention to the way performance can project unintended messages, eliciting contradictions in the popular reception of meaning. One can argue that this song extends the choir’s reach to rural audiences thus raising awareness there; or even that the song’s appearance right at the end of the film is deliberately ironic. It is interesting, anyway, that the only song in the film that takes on the theme of advocacy directly uses traditional Zulu song and dance styles, is vibrant and energetic, and allows each dancer to perform as a soloist in the middle of the group. Zinhle’s focus on women specifically, invites the viewer to understand the complex gendered dynamics in addressing HIV/AIDS and the foregoing discussion provides context and

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explicates these complications, hence the need to affirm females within the HIV/AIDS. Centralizing the plight of women and seeing herself and the group as a conduit to the provision of medication is, on its own, a counter-discursive stance on prioritizing the health of women who are often ostracized during illness.

(b) Collaboration to Normalize HIV/AIDS Any one of Zinhle’s utterances in the narrative of her journey with HIV/AIDS illustrates this theme. Commenting on her appearance and what might be her community’s reactions she states, ‘Because I am too thin’. People will say, ‘What is a skeleton doing on the road’. As Levin (2005) reminds us: ‘[u]nlike New York or London, here one very rarely saw sick people at the bars or clubs … Of course this was part of the broader picture of denial … If you couldn’t see it, it wasn’t there’ (43). Inherent in such images and therefore in the expectation of what it means to live with HIV/AIDS are two issues: firstly the distance between those living affluent lives in the cities and people abandoned in rural areas; secondly, the image of skeletal bodies as the only image of those living with HIV/AIDS. Zinhle’s testimony about her later weight gain offers a powerful counter-discourse. She informs the viewer that ‘[o]ne of the missions I have … is to prove that I could do it, then the next person could do it. I think I am a normal person’ (my italics). What makes this statement even more effective is the nature and extent of her involvement in her community and the Sinikithemba choir. She not only does hospital rounds as a counsellor, she sings and dances, takes care of her child, grooms herself, and keeps her joyful character throughout the documentary. This constant counter-discourse declares that HIV/AIDS happens to normal people, just like any other disease. And normal people offer help. Zinhle was helped by the social worker who took her in for regular treatment, and gave her ‘a gift of life’. The normalization of her status came at precisely the moment when ‘She gave me a second chance … without asking for a penny’, a manifestation of ‘Umuntu, ngumuntu, ngabantu’ (A person is a person by virtue of other people). Furthermore, she wants collaborative nature of care and

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supports to extend to other people fighting against the disease: ‘We want scientists and other people to put face on people who are HIV positive. It’s not figures of people who are dying. It’s really human beings, people like you and me. People who can still be saved’. Her humanizing influence extends to others: ‘So I owed some people some help. I volunteered in the clinic’, through which act she shows the value of grassroots activism. Her own normalization was reflected above all through singing in the choir. ‘After starting anti-retrovirals … I gained weight’ and then ‘I could walk, I could sing, I got fat. I felt I’ve got energy’. In South Africa, where song is a way of life and choirs are plentiful, this was a landmark stage of normalization for Zinhle. And it was the choir that ‘spoke’ for the whole clinic, in Boston, and the audience’s response was to immediately give all choir members ARVs. Singing, the most normal activity in Africa, represented the social normality after which all concerned were striving.

(c) Transformation of Identity Zinhle’s life blossomed as soon as she regained her health. In the documentary, we see her working in the hospital, singing in the choir, and addressing dignitaries in an international conference. She becomes a political symbol too. Collectively these dramatize the ordinariness of her personhood and make the realms of possibility for beating odds against a negative HIV identity possible for everyone. A central portion of her narrative is devoted to transforming oneself. ‘One of the missions I have … is to prove [that if ] I could do it, then the next person could do it’. Her personal testimony reverses the negative approach to HIV/AIDS. By empowering herself Zinhle thereby empowers others. Her self-questioning, ‘Why am I doing this?’ because she wonders what people will say, ‘What is a skeleton doing on the road?’ is subverted immediately by her assertion, ‘Look, I’m fat now’ and not only that, but she is able to see herself more clearly, and thus see the plight of others. ‘I do see people that are, were like me, people that did not know whether they were coming or going’. Her emphasis on acts of physical and emotional transformation allows her to see her own power:

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‘If people can see that if I have been through that much of opportunistic infection, and got better because of my intervention, and also because of treatment’s intervention, they can do it’.In the subversion of negative to positive attitudes, her own personal testimony is paramount.

(d) Political Economy of Treatment Among the most contentious issues with regard to HIV/AIDS treatment in South Africa has been the much-vaunted denialism of Thabo Mbeki and his Health Minister, Dr Manto Tshabalala-Msimang. The cost of treatment is an equally problematic issue due to the high prices of antiretroviral drugs charged by pharmaceutical companies. While most scholarship and commentary has highlighted the prohibitive costs of antiretroviral treatment, Levin in his memoir brings to closer scrutiny the added costs associated with managing the opportunistic infections associated with full-blown AIDS, in his case, cancer. And so what remains glaring in the struggle against HIV/AIDS is access to adequate and affordable health care. As Zinhle’s brother, Richard says: ‘I haven’t got money, no money. Treatment is too expensive’. His three-fold repetition—‘no, no, too expensive’ becomes a reason for not getting tested, and so he unwittingly adds weight to the argument that ARVs are only for the privileged few, making access to them a political issue. Previously, I alluded to the ‘geography of blame’ where some nations are not only blamed for being ‘carriers’ of HIV/AIDS and thus ostracized, but are also seen as the originators due to their ‘abnormal’ cultural practices. Zinhle’s response is that although ‘I am from a poor family’ and although ‘some people say that really poor countries should not get anti-retroviral drugs. They say poor people, uneducated, will not be able to be adherent’, this view must be rejected. ‘I am adherent to my ARVs … I have never missed a dose, ever’, gets her a round of applause in Boston partly because she exposes the political economy of treatment at a local and global scale.

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(e) Invocation of ‘The Struggle’ Given that IThemba was made as a consciousness-raising documentary, it is not surprising that it uses discursive strategies that index South Africa’s liberation struggle (umzabalazo), which between the 1960s and 1980s galvanized the majority of people against apartheid. Musical practices often provided a sense of identification during this period, and even today, well-known struggle songs/chants continue to be used in contexts where solidarity is important (for example, in the #feesmustfall, #RhodesMustFall movements). Hence the song, ‘Unity’ which was sung as a toyi-toyi during the struggle, invokes the memory of it in a collective will to quash HIV/AIDS stigma and denial. Umzabalazo (the struggle) used song against apartheid’s blatant disregard of human rights. Here, that force of song is transferred to the struggle against HIV/AIDS, which similarly strips people of their dignity. At the time of the film, that struggle was directed at the South African government’s mangled policy on HIV/AIDS treatment.14 Similarly, the song ‘All nations must take up arms’ is about unifying to defeat a common enemy. ‘Here is a virus attacking’, is a direct reference to bodily affliction, and the defence is the counter-attack of education: ‘They must not be armed with spears/Rather with knowledge to prevent death’. During the struggle the rallying call of the 1970s, especially after the Soweto uprising of 1976 was ‘liberation before education’, but in the 2000s education is seen as a form of liberation, a way of releasing the imprisonment of the mind that is so closely linked to stigma and denial. ‘All nations must take up arms’ is an explicit counter-discourse, identifying itself with the global fight (‘all nations’) against HIV/AIDS. Following Garofalo’s terminology, the Sinikithemba Choir’s visit to Boston allies itself with a set of globally mediated musical events that respond to a diverse set of global issues such as famine relief, natural 14

Lee Hirsch’s 2002 documentary film Amandla! Revolution in Four Part Harmony presents a vivid case of how song was central to the struggle for freedom in South Africa. It served multiple roles of raising consciousness to the plight of the oppressed while also galvanizing the populace to collective, transformative action. Toyi-toyi or Ingoma Zomzabalazo (struggle songs) are thus salient in the continuing post-apartheid struggles such as those waged by grassroots groups in South Africa.

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disasters, and epidemics. Characteristically, these are ‘mass mediated popular musics … which share an intimate relationship with mass communication technologies and political struggles around the world’ (Garofalo, 1992, p. 1). Not all such events are star-studded musicopolitical spectacles utilizing advanced media technologies for reaching maximum audiences. On however small a scale, IThemba/Hope has the same spinoff that many larger events have, because of the global and national campaign that the film can identify itself with. IThemba is a humble grassroots production, but it still enters the media circuit and Zinhle’s presentation in the concert in Boston, testimony and declaration of hope, and triumph against the stigmas associated with an HIV/AIDS discourses, constructs a counter-discourse for ordinary people to identify with.

(f) Resistance and Hope In IThemba the theme of hope, resistance, and transcendence finds extensive expression. This may be attributable to the fact that Sinikithemba’s repertoire is largely religious. The gospel songs presented by the choir carry messages that are recurrent in many of the religious beliefs of the Christian faith. These include transcendence over current tribulations in the hope of a reward in the afterlife, strength in the face of worldly troubles, and the need to keep one’s faith strong at all times. Sinikithemba choir appears for the first time in IThemba singing the gospel song, ‘This little light of mine, I’m gonna let it shine/I won’t let Satan blow it out/Everyday let my light shine’. In another song, the lines: ‘Some will cry/Others will rejoice/Yet others will be crowned with victory’ strengthen the emergent theme of resistance, hope, and transcendence over worldly suffering. Such lyrics bolster the development of a ‘positive resistance identity’ (Roberts, 2005, p. 76), important for people living with HIV/AIDS: resistance towards the negative effects of stigma while rebuilding one’s self-worth, previously damaged by the negativity surrounding an HIV/AIDS diagnosis. Roping in religious sentiments into engaging with HIV/AIDS is important for the production of destigmatizing and empowering discourses, given the widespread influence of

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the Church in South Africa. These songs champion a religious message in opposition to the sometimes condemning tones associated with some religious institutions, and indeed to the ‘religiosity’ often associated with the way gospel music is used in churches. More important that the evocation of a transcendental hope, perhaps, is the evocation of a strong social movement embedded in song lyrics. As Epstein (1996) challenges us, we must pay ‘attention to the means by which social movements engage in claims making – how they mobilize, how they construct collective identities, how they ‘frame’ social issues and represent reality’ (19). Key aspects of social movements include the ‘resource mobilization’ strategy where coalitions with other disenfranchised groups are formed and sponsorship is sought in order to effectively appeal to a wider audience. A key feature of AIDS activism, then, is the politicized nature of the body. The body is ‘the tangible form of selfhood’ (Epstein, 1996, p. 21) on which are inscribed the pain, fear, or knowledge and at times uncertainty of living with AIDS. This embodiment of life with AIDS makes one’s body the ultimate site of the struggle for medication, and the most powerful sign of testimony. Herein lies the importance of Zinhle’s testimony—reinforced by her positive physical energy as a chorister. Citing ACT UP/New York activist Jim Eigo, who once declared, ‘So here I am, my one and my only audio visual aid. There will be no next slide’, Epstein poignantly points to the powerful discursive strategy of self-presentation, which allows for AIDS to have a human face (ibid.). Practices which assign HIV people to a status of invalids and those that cannot be seen are subverted in powerful ways here. And as Helen Schneider (2002) acknowledges, the strength of the AIDS movement lies in advocating for access to drugs due to the basic refusal to see oneself or others as victims. Associated protests, litigations, and even forms of civil disobedience have fundamentally altered government practices in the provision of treatment, while also exerting pressure on the scientific-commercial complex which determined such aspects of medicines as patents and prices.15

15

What may be broadly referred to as the ‘AIDS Movement’ in South Africa is formed by a coalition of organization such as NACOSA, NAPWA, TAC, which in turn have close working relations with public health scientists and NGOs such as MRC, AIDS Consortium, MSF.

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At this point, it is important to factor in the role of music in social movements. For Eyerman and Jamison (1998), social movements are not merely political activities but ‘provide spaces for cultural growth and experimentation, for mixing of musical and other artistic genres, and for the infusion of new kinds of meaning into music’ (1). Here, they argue that ‘musical and other kinds of cultural traditions are made and remade … to inspire new waves of mobilization’ (2) wherein ‘the combination of music and politics that takes place in social movements is an important, if often overlooked source of cultural transformation’ (5). I suggest that in the film IThemba/Hope, which is about a choir and in which song is a major feature of the narrative, music aligns itself with a far larger social movement to which HIV/AIDS counter-discourse belongs. Moreover, like any social movement, it ‘utilize[s] the media of artistic expression for communicating with the larger society and, by so doing [serves] to (re)politicize popular culture and entertainment’ (10). By closely examining various discursive acts in IThemba one is able to discern the manner in which some songs are transformed from their ordinary usage to more activist uses, while others draw from their linkage to previous struggles and are thus reinscribed into communal consciousness to regenerate a sense of the urgency of the new struggles relating to HIV/AIDS. As Eyerman and Jamison put it, ‘music enters into [the] collective memory, and songs conjure up long-lost movements from extinction as well as reawakening forgotten structures of feeling’ (1998, p. 161). Songs like ‘This little light of mine’, ‘All nations must take up arms’, ‘Some will cry’, ‘Unity’, and even ‘Tshitshi lam’, constitute a continual appeal to a collective and shared problem, providing rich material for discursively engaging with current issues surrounding HIV/AIDS.

Conclusion I was young when the struggle for political freedom was being waged; only an infant when the historic 1976 riots took place. With the new democracy in 1994, I became a beneficiary to struggles that I did not quite participate in. At the same time, all around me it was evident

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that HIV/AIDS, homelessness, poverty, and violence constituted a new terrain of disenfranchisement during the period of the transition to the democratic dispensation. In some ways, the research for this chapter constitutes part of a long journey in which I attempt to merge my scholarship with the real problems of being a South African in the twenty-first century. No doubt, in the case of the main subject of this research, HIV/AIDS, no amount of writing or singing can achieve as much as the prompt discovery of a cure. Yet, I remain convinced that interventions from the humanities and especially music broaden the ways in which HIV/AIDS can be thought of and practices in relation to it explored. Such practices include developing better social systems of care and establishing networks to provide dignity to those who face the difficulties of living with a disease as complicated as HIV/AIDS. This chapter has drawn attention to the way in which the documentary film, IThemba/Hope, helps to normalize and de-stigmatize the plight of rural South Africans who feel condemned by society as a result of living with HIV/AIDS. I have shown how a positive engagement with HIV/AIDS appears at the level of counter-discursive practices in the film, subverting the ideological basis of the negative discourses that are often (still) used to frame thoughts and actions about HIV/AIDS. The film demonstrates that music constitutes one of the most important ‘concerted efforts’ to counter negative discourses, whether at an international conference or at grassroots level. While I have employed critical discourse analysis as a methodological tool and theoretical framework to arrive at the tentative conclusions given above, it is also evident that my conclusion only creates another point of departure for further research.

References Ashcroft, A. (2002). An epidemic of witchcracft? The implications of AIDS for the post-apartheid state. African Studies, 61(1), 121–143. Barber, K. (1997). Popular reactions to the Petro-Naira. In K. Barber (Ed.), Readings in African popular culture (pp. 91–98). Indiana University Press.

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Barnett, T., & Whiteside, A. (2002). AIDS in the twenty-first century: Disease and globalization. New York: Palgrave Macmillan. Barz, G. (2006). Singing for life: HIV/AIDS and music in Uganda. Routledge. Bourgault, L. M. (2003). Playing for life: Performance in Africa in the age of AIDS. Carolina Academic Press. Cameron, E. (2005). Witness to AIDS. Tafelberg Publishers. Dalrymple, L. (1995). Researching the use of drama for AIDS and lifestyle education in Kwa-Zulu Natal, South Africa. In J. Somers (Ed.), Drama and theatre in education: Contemporary research (pp. 87–96). Captus Press. Epstein, S. (1996). Impure science: AIDS, activism, and the politics of knowledge. University of California Press. Eyerman, R., & Jamison, A. (1998). Music and social movements: Mobilizing traditions in the twentieth century. Cambridge University Press. Fairclough, N. (1995). Critical discourse analysis: The critical study of language. Longman. Fairclough, N. (2001). Language and power (2nd ed.). Pearson Educational Limited. Farmer, P. (1992). AIDS and accusation: Haiti and the geography of blame. University of California Press. Fassin, D., & Schneider, H. (2003). The politics of AIDS in South Africa: Beyond the controversies. British Medical Journal, 326, 495–498. Foucault, M. (1972). The archaeology of knowledge (A. M. Sheridan Smith, Trans.). Tavistock. Foucault, M. (1980). Power/knowledge: Selected interviews and other writings 1972–1977 (C. Gordon, Ed.). Pantheon Books. Foucault, M. (1987). The order of discourse. In R. Young (Ed.), Untying the text: A post-structuralist reader (pp. 48–78). Routledge and Kegan Paul. Garofalo, R. (Ed.). (1992). Rockin’ the boat: Mass music and mass movements. South End Press. Hogan, K. (1998). Gendered visibilities in black women’s AIDS narratives. In N. L. Roth & K. Hogan (Eds.), Gendered epidemic: representations of women in the age of AIDS (pp. 165–190). Routledge. Janks, H. (2005, December). Language and the design of tests. English Teaching: Practice and Critique, 4 (3), 97–110. Leclerc-Madlala, S. (2000, September). Silence, AIDS and sexual culture in Africa. AIDS Bulletin, 47–84. Leclerc-Madlala, S. (2001). Demonising women in the era of AIDS: On the relationship between cultural constructions of both HIV/AIDS and femininity. Society in Transition, 32(1), 38–46.

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Levin, A. (2005). AIDSAFARI: A memoir of my journey with AIDS. Zebra Press. Marks, S. (2002). An epidemic waiting to happen? The spread of HIV/AIDS in South Africa in social and historical perspective. African Studies, 61(1), 13–26. Marschall, S. (2002). Community mural art in South Africa. UNISA Press. Mbali, M. (2001). A long illness: Towards a history of NGO, government and medical discourses around AIDS policy making in South Africa (Unpublished Honours essay). University of Natal, Durban. Mbali, M. (2004). AIDS discourses and the South African state: Government denialism and post-apartheid AIDS policy making. Transformation, 54, 104– 122. McGregor, L. (2007). Khabzela: The life and times of a South African. Jacana Media. McNeill, F. G., & James, D. (2008). Singing songs of AIDS in Venda, South Africa: Performance, pollution and ethnomusicology in a “neo-liberal” setting. SAMUS: South African Music Studies, 28, 1–26. Motsemme, N. (2007). ‘“Loving in a time of hopelessness”: On township women’s subjectivities in a time of HIV/AIDS. African Identities, 5 (1), 61–87. Nattrass, N. (2007). Mortal combat: AIDS denialism and the struggle for antiretrovirals in South Africa. University of KwaZulu-Natal Press. Parker, W. (1994). The development of community based media for AIDS education and prevention in South Africa: Towards an action-based participatory research model (Unpublished PhD thesis). University of Natal, Durban. Roberts, S. J. (2005). Resisting stigma: Living positively with HIV/AIDS in South Africa (Unpublished MA thesis). University of Johannesburg, Johannesburg. Schneider, H. (2002). On the fault-line: The Politics of AIDS policy in contemporary South Africa. African Studies, 61(1), 145–167. Sontag, S. (1990). Illness as metaphor and AIDS and its metaphors. Anchor Books Edition. Soskolne, T., Stein, J., & Gibson, K. (2003). Working with ambivalence: Finding a positive identity for HIV/AIDS in South Africa. University of Cape Town. Steinberg, J. (2008). Three-letter plague: A young man’s journey through a great epidemic. Jonathan Ball Publishers. Treichler, P. (1987). AIDS, homophobia, and biomedical discourse: An epidemic of signification. October, 43 [AIDS: Cultural Analysis/Cultural Activism], 31–70.

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Van Dijk, T. A. (2001). Critical discourse analysis. In D. Schiffrin et al (Eds.) The handbook of discourse analysis (pp. 352–371). Malden, Massachusetts and Oxford, UK: Blackwell Publishers Ltd. Van Wyngaard, A. (2006, July). Towards a Theology of HIV/AIDS. REC Focus, 6 (1 and 2), 51–75. Vokwana, T. (2002). ‘We sing so that they may have life and have it more abundantly’: Music performance and AIDS in South Africa. Ars Nova, 34, 42–47. Vokwana, T. (2014). HIV/AIDS and the discourses of stigma and denial: The interventive nature of music performance (Unpublished MA thesis). University of Witwatersrand, Johannesburg. Watney, S. (1994). Practices of freedom: Selected writings on HIV/AIDS. Duke University Press. Wodak, R. (1999). The discursive construction of national identity. In R. Wodak et al (Eds.) The discursive construction of national identity (pp. 7-40). Edinburgh: Edinburgh University Press. Wreford, J. (2008). Myths, masks and stark realities: Traditional African healers, HIV/AIDS narratives and patterns of HIV/AIDS avoidance. Centre for Social Science Research.

Filmography Murrenm, K., & Walker, N. (2004). IThemba/Hope. Murren-Walker Films. Hirsch, L. (2002). Amandla! A Revolution in Four Part Harmony. Ato Pictures.

Part IV Risk Perception and Health

7 “Fat People Are More Respected”: Socio-Cultural Construction of Obesity and Overweight Risk & Prevention in Ugandan Communities Stella Neema, Gerald Mutungi, Sheila Mwebaze, and Silver Bahendeka

Introduction Non-communicable diseases (NCDs) are now the leading cause of death in most regions of the world and are on the increase in developing countries. All the non-communicable diseases/conditions have four common behavioural risk factors, namely: tobacco use, harmful use of alcohol, unhealthy diet poor in fruits and vegetables and rich in fats and refined sugars and salt and physical inactivity (WHO, 2014). The intermediate S. Neema (B) Department of Sociology and Anthropology, Makerere University, Kampala, Uganda G. Mutungi Ministry of Health, Kampala, Uganda S. Mwebaze Makerere University, Kampala, Uganda S. Bahendeka Uganda Martyrs University, Nkozi, Uganda © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_7

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risk factors shared by these diseases are raised blood pressure, raised blood cholesterol, raised blood sugar and obesity or overweight. Obesity and overweight are medical conditions in which excess body fat has accumulated to the extent that it may have negative impacts on an individual’s health, social and financial outcomes (WHO, 2016). For adults, overweight is a BMI greater than or equal to 25; and obesity is a BMI greater than or equal to 30. Generally, about 13% of the world’s adult population (11% of men and 15% of women) were obese in 2016 (WHO, 2016). The World Health Organization declared obesity to be an epidemic, and defined being overweight or obese as a “disease” (WHO, 2000). Overweight and obesity were more associated with the developed world but there is growing evidence that it is on the rise in low- and middle-income countries, particularly in urban settings. Obesity has tripled in the developing countries over the past 20 years (Haidar & Cosman, 2011). Since 2000, Africa for instance has had an increase of 50% in the number of overweight children under five (WHO, 2016). Obesity and overweight is a complex chronic disease that has become a major public health issue and is of concern worldwide due to its high prevalence, causal relationship with many serious medical conditions, adverse effects on quality of life, including type 2 diabetes, cardiovascular disease and certain cancers (Agne et al., 2012), Some behavioural and environmental factors have been associated with obesity, including a decreased level of occupational and leisure time activity and a ready access to food (Bahendeka et al., 2016). Obesity and overweight result from both environmental and genetic factors. Hormones such as Leptin has been linked to obesity phenotype in humans (Galletta, 2016). Furthermore, sleeping habits and amount of sleeping time are also significant predictors of increased risk of adult obesity (Landhuis et al., 2008). Tremblay and Lachance (2017) affirm that increased prevalence of obesity over the last decades has also been attributed to suboptimal macronutrient diet composition and insufficient physical activity. Obesity and overweight are preventable if the different stakeholders— individuals, government and health providers take serious action to avert it.

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Studies show modernization and a sedentary lifestyle and increase in consumption of fast foods have contributed to gaining unhealthy and excessive weight (Abdullah et al., 2015). The perception of good food is changing and there is a preference for convenience and fast foods compared to traditional foods especially by the young people. This may contribute to increasing obesity rates with serious health implications. That said, culture influences perception of food, eating and body size. Indeed studies have examined overweight and obesity as culture-bound syndromes and it has become a cultural norm that people eat unhealthily (Ritenbaugh, 1982). Social gatherings in some cultures encourage overeating and certain foods are associated with social status (Kruger et al., 2005). Studies show within the African settings most women after giving birth engage in eating habits and practices that promote excessive weight gain and weight gain is viewed as an indicator of mother’s wellbeing (Agyapong et al., 2020). Studies have addressed the question of how cultural norms around the moral undesirability and unacceptability of fatness exert such a seemingly powerful effect on embodied health (Brewis et al., 2016; Lupton, 2013). Related to that is the culturally deep-rooted perceptions of weight in sub Saharan Africa that show a preference for overweight and obesity despite the fact that they are some of the risk factors linked to mortality and reduced quality of life among populations.

Uganda and Its Health Care Services Uganda is a land locked country located in East Africa. The political unrest that occurred between 1970 and 1995 caused the health system of Uganda to collapse. Earlier, in the 1960s, Uganda’s health system was one of the best in the region with well-equipped and staffed hospitals (Mukasa, 2012). Due to the conflict in the northern and eastern region of the country, the millennium development health targets were not met as planned (Carlson, 2004). Currently, Uganda has one of the worst health systems in the world with a health performance ranking of 186th out of 191 nations (Mukasa, 2012). Communicable diseases are still a major cause of death yet there is limited access to quality healthcare.

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The other health challenges still affecting the country are HIV/AIDS and non-communicable diseases. The fertility rate of Uganda has also remained high: 6.24 children per woman’s reproductive life time (World Bank, 2011), leading to a steadily increasing population growth that is now estimated at 41,487,965 (World Population Prospects, 2017). The population largely consists of young people with about 49% under the age of 15 and 75% under 25. The population aged 60 and over has also more than doubled from 686,000 in 1991 to 1,433,596 in 2014 (UBOS 2016). Furthermore, Uganda is the largest refugee-hosting country in Africa with around 1.4 million refugees due to its open door refugee policy (OPM & UNHCR, 2020). Uganda is also one of the poorest nations in the world with 37.8% of her population living on less than $1.25 per day (World Bank, 2015). The poverty is more widespread in the rural areas where the majority (80%) of the population live (WHO, 2014). The people in the rural areas depend on subsistence farming as their main source of income. Health services in Uganda are delivered by both the public and private sectors with Government of Uganda overseeing most facilities. Government of Uganda owns 71.8% of the health centres and 52.2% of the hospitals, compared to 19.6% of health facilities and 40.7% of the hospitals owned by Private Not-For-Profit (NFP) organizations and 8.6% of health centres and 7.1% of the hospitals owned by the Private Health Practitioners (PHP). The burden of disease still remains largely in the domain of infectious diseases. Disability-adjusted life years (DALYs) quantify both premature mortality as measured by Years of Lives Lost (YLLs) and years lost due to disability (YLDs) within a population. In Uganda, the top three causes of DALYs in 2010 were HIV/AIDS, malaria and lower respiratory infections, but shared the increase in prevalence with non-communicable diseases compared to the past 10 years. In Uganda, being overweight (BMI 25.0–29.9 kg/m2) was estimated at a prevalence of 14.5%. Females had a higher prevalence of overweight than males (females 19.5%; males 9.5%). Obesity (BMI ≥ 30 kg/m2) was estimated at a prevalence of 4.6%. Females had a higher prevalence of obesity than males (females, 7.5%; males, 1.8%). Overweight and

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obesity were more prevalent among urban dwellers than rural dwellers (overweight 22.6% vs 12.6% and obesity 9.6% vs 3.5% for urban and rural, respectively (Bahendeka et al., 2016). Mayega (2014) found that obesity, insufficient physical activity and unhealthy diets put Ugandans at higher risk of type 2 diabetes in primary care; and about 18% of people aged 35–60 years were overweight, while 21% had hypertension. Just a few (34%) had adequate knowledge about lifestyle diseases. In Uganda, although infectious diseases contribute the highest disease burden, NCDs are on the increase, posing a threat of double epidemics of communicable diseases and non-communicable diseases. Evidence in Uganda and seen in most other African countries suggest that there is still lack of awareness about the growing problem of NCDs coupled with the absence of a clear policy framework for the prevention and management of non-communicable diseases. The chapter examines the social and cultural construction of obesity risk and prevention in Ugandan communities.

Approach and Methods Study Design The qualitative study was part of a quantitative survey that aimed at establishing the prevalence of the main risk factors for the major non-communicable diseases (NCDs) in the Ugandan population. The aim of this qualitative study was to understand the knowledge, attitudes, perceptions and practices of Ugandan communities regarding non-communicable diseases and their risk factors. An ethnographic study design was employed.

Study Population, Setting and Sampling The study population consisted of community members who were 18 years and above in the nine selected districts in Uganda. We conducted 36 focus group discussions comprising 6–8 participants, 121

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key informants and 41 in-depth interviews. Participants were purposively selected to ensure high diverse study population, quality answers and a thick description of the phenomena. The different categories of study participants were important in order to get different perspectives and insights about overweight and obesity in the study area. Based on the regions of Uganda, two districts were purposively selected from each region for the qualitative component of the NCD study. In total 9 districts were selected as shown in Table 7.1.

Methods A within method triangulation was adopted and included key informant interviews, in-depth interviews and focus group discussions (FGD). Indepth interviews were held in the community at participants’ homes and the FGDs were either held in a community hall or under a tree. Key informant interviews were conducted at the interviewee’s offices. All interviews were conducted by trained research assistants and performed in the local languages.

Focus Group Discussions Focus group discussions were conducted with separate groups of men and women to explore their knowledge, beliefs, perceptions and behavioural practices regarding Non-communicable diseases (NCDs). In total 36 focus group discussions were conducted (four per district and with 6–8 participants per FGD). A focus group discussion guide with the relevant thematic areas was used to guide the discussion. All the focus group discussions were audio recorded in addition to notes taken by the note taker during the focus group sessions.

In Depth Interviews In-depth interviews were conducted with purposively selected people with NCD risk factors (obesity, diabetes, hypertension) and they were

Total

West Nile

Central

Northern

Eastern

Mbarara

Western

Arua

Kampala

Masaka

Gulu

Lira

Mbale

Jinja

Hoima

District

Region

2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 2 males (one in urban, one in rural) 2females (one in urban, one in rural) 2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 2 males (one in urban, one in rural) 2 females (one in urban, one in rural) 36

Focus group discussions (4 per district 2 male and 2 female groups; 6–8 participants per group)

Table 7.1 Sampled districts and number of participants per method

41

4

4

121

13

10

15

15

5 5

11

15

4 5

14

12

16

Key informant interviews

5

5

4

In-depth interviews

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intended to provide a deeper understanding and more insights on broader issues related to NCDs such as experiences lived, changes in lifestyle brought about by their new condition, health care seeking behaviour and patterns, support provided (facility, family, community), difficulties encountered as a patient suffering from NCD, etc. In total 41 in-depth interviews were conducted—about 4–5 per district. All the in-depth interviews were tape-recorded in addition to note taking done by the interviewer.)

Key Informant Interviews Key Informant Interviews were conducted with relevant Ministry of Health officials, health workers and some opinion leaders in the districts visited. In total 121 Key informant interviews were conducted. A key informant guide was used to guide the interviews. Field notes were also taken during the interviews and were used side by side with the interview recordings to transcribe and analyse the data.

Research Instruments An interview guide was developed for each type of method and was guided by the objectives and research questions, these were pretested after the training and final tools were revised. Key broad questions asked included perceptions and experiences of obesity, underlying causes, and suggestions on prevention strategies.

Data Management and Analysis All interviews were audio recorded and transcribed verbatim by the research assistants and quality checked by the investigators. Field notes collected during the interviews (formal and informal, including participant observation) were expanded and collated. The investigator worked with the research assistants through the transcripts. Identified codes

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were reviewed to identify meanings and relationships between the codes. Similar codes were grouped into sub-themes and further into overall themes. The code structure evolved inductively reflecting participants’ experiences and voices. Data were analysed using a qualitative thematic content analysis approach (Gioia et al., 2013; Hsieh & Shannon, 2005) and the following steps were involved; (1) generating “first order concepts” (i.e., data expressing informants’ terms and understandings); (2) generating “second order themes” (i.e., abstract level themes and a larger narrative describing” in theoretical terms); and (3) identifying larger dimensions to help explain various themes suggested in the data. Meanings were formulated and clustered into themes. Authors later reviewed the themes together to ensure inter-rater reliability (Creswell, 2013). This analysis was performed on a rolling basis as soon as data were received from the field. The iterative analysis enabled swift identification and focus on themes as to whether data was relevant for the study (Graneheim & Lundman, 2004).

Assessing Quality of Data, Approaches and Methods We employed Lincoln and Guba’s guidelines (Lincoln & Guba, 1985) to ensure rigour and trustworthiness of the data and methods used. Rigor was enhanced through a triangulation of the different methods of qualitative data collection sources. Dependability and conformability were guaranteed through external audit trail. Finally, the research team conducted validation meetings with different stakeholders in order to get their insights into the study findings.

Limitations of the Study The methods used for this study were mainly qualitative. Given the sample sizes and purposive sampling associated with focus group discussions, in-depth interviews and key informants, these results cannot be

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generalized to a larger population. However, this study provides significant underlying insights into a range of beliefs, perceptions, opinions and practices in Uganda regarding obesity and overweight and the risk factors.

Results Introduction In this section we present results according to the thematic areas that emerged from the data and include causes of overweight and obesity; perception of overweight and obesity, risks associated with overweight and obesity; and prevention of overweight and obesity.

Aetiology of Overweight and Obesity Participants were asked what causes overweight and obesity. In each cultural group there is a local term to describe a person who is overweight and obese. Words like Munnene, omuhango, agomokire mean a big, fat person. Participants from both urban and rural settings reported that eating behaviour was the main cause and that some people are at a disadvantage when it comes to controlling their eating habits. Participants were of the view that over eating causes obesity and some people were ignorant about its consequences on their health. The level of obesity in society was said to be increasing because of careless eating and less physical activity. Careless eating was described as eating any food especially fried, oily and fatty foods. Participants also mentioned that people in rural areas rarely fry food as most is boiled and steamed in banana leaves, especially in Banana growing areas and the people in the northern districts use healthier sesame ( sim sim paste- odii) instead of cooking oil. Most people who are fat are those staying in town because they eat too much fatty foods like pork, goat meat, roasted chicken and chips. They add alcohol, especially beer, to that type of diet. Their work does not

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involve using a lot of energy most them are working in government or private organization. They like going in the gym but when they are done they eat a lot of those foods. So what do you expect? They are the ones with big bellies. (KI. Arua district)

Heredity was another etiological factor mentioned by the key informants. They reported that some people inherited obesity from their parents and this was a generational problem. Participants were asked whether there was anything like normal weight, various opinions were expressed in response. Some participants focused on mobility while others were interested in both measurable weight and mobility. Normal weight, for the mobility group, was not being too thin or too fat but while the majority defined this as being able to walk well and to do heavy work without getting tired others said it’s being energetic and able to move about without any problem. Yet others said it was when a person was not lazy even if they were fat. Some participants focused on both measurable weight and mobility arguing that normal was when a person was of medium size and could move, walk and run easily. Normal weight was also considered to exist when one was very active and had no diseases and could move with ease. Others tried to explain by giving figures of a normal weight such as adult weighing less than 45 kg was underweight and the one weighing more than 80 kg was overweight or obese. When they were asked whether they thought a considerable number of people in their community were obese or overweight, the majority of the rural focus group participants mentioned they were not fat because people in their communities hardly ate fatty foods like meat and fried food and that most of the people in the rural communities were lean. Most people reported that in the rural areas people were physically active. There were a few who were fat but not overweight. Many were normal weight, as described above and that only a few women were obese. Participants in rural communities acknowledged there were more obese women compared to men and the level of obesity was increasing. However, they noted that there was a growing number of people eating carelessly (unhealthy) especially eating too much fatty food with less physical activity.

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There is a big number (of fat people) right now because people are eating carelessly. They are eating Pork most of the time FGD-WomenNyamitanga-Mbarara

Perceptions of Overweight and Obesity Various perceptions regarding obesity and overweight were expressed by the study participants. The views ranged from acceptance to resentment. Some participants thought that being obese was synonymous to wealth, prestige, contentment and looking good. Some people thought that being fat was good because it gave status and self-recognition to the person. Some thought fat people were doing well financially and health-wise. Participants, especially from rural communities, were of the opinion people generally want to gain weight and it is usually a complement if one said “you have put on weight or have gained weight ”. This showed that the individual did not have problems or worries and is comfortable, hence the weight gain. On the contrary if one was told he/she had lost weight then that would be a sign of problems that has been expressed through the loss of weight. Thus, gaining weight may be compatible to the social norms but the health benefits may be overlooked or compromised. A few participants from the urban communities discussed that some people had gone to the extent of enlarging some parts of their bodies to look fat and big. There were several advertisements that called upon people, especially women, to enlarge their hips. There is even medicine now that helps people to enlarge their buttocks and hips. That’s how popular overweight is. I saw an advert on the way saying that if anyone wants to enlarge the hips she can be assisted by a company called Faco. They are given a particular drug to enlarge the body. (FGD-Women-Nyamitanga-Mbarara district)

Most participants in the focus group discussions in both urban and rural areas mentioned that actually thin people were perceived as not having much to eat, and on face value, were likely to be considered poor. That thin people most likely had problems.

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One day we were in town in Mbarara and they showed me a thin man that he was the owner of a beverage factory which was supplying soft drinks to the whole country. I could not believe. I used to think the owner was a fat man. (FGD- Men-Kakika-Mbarara district)

Another view was that thin people may not be respected compared to fat people unless they are well known in the community. This was echoed in almost all the communities studied. Thin people are not respected like fat people. When we go to parties, thin people may be given ‘ekitumba’, a banana stem to sit on in case seats are not enough. The fat person will be the one to get a chair and may be served well. (FGD-Men-Bushenyi-Rugando-Mbarara)

By gender, most participants reported that generally, there more women who are overweight than men and that extremely thin women were thought to be sick of HIV/AIDS as illustrated by the quote below. Some women feel they are on the market if they become overweight . Some slim woman could be perceived as living with HIV/AIDS. (FGD-Men, Entebbe Road, Nakaloke Town Council, Mbale district)

Overweight and Obesity as a Socio-Cultural Construct The study established that social and cultural understanding of overweight and obesity is essential and deeply embedded in the cultural systems of the communities. Being overweight and obese is a social norm, culturally acceptable in all cultures in Uganda. Study participants intimated that culturally being fat was and is still desired despite advertisements and messages depicting slender bodies as ideal. This is reflected in the institution of marriage where brides were fed on fattening foods before marriage. This was done to enhance beauty. Such societal influence may inhibit public health messages and prevention efforts. Some community members seem not to see the relationship between weight

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gain and NCDs such as diabetes by fronting socio-cultural norms and cultural values over individual lifestyle changes. Most participants reported that they rarely saw overweight and obesity people dying. What was most common were people who lost a lot of weight and died. In this case their cultural construction of fatness or obesity is understood through their view of their world that may govern their thinking about health and illness. We dot no see it (obesity) as a problem. When one puts on weight (flesh) it is a sign that things are going on well with him. And in our community most people fall sick and die when they are very thin. So people try as much as possible not to be thin. (FGD-Men-Bushenyi-RugandoMbarara)

Risks Associated with Obesity Participants discussed the risk factors associated with obesity and most of them mentioned that obese people had chances of getting hypertension, heart problems, kidney problems and diabetes and could not do active work such as digging; could not walk easily and were in bad shape most of the time and that women tended to develop swollen legs. They used to complain about me that I was tiny and that I had worms in my body eating the food I eat. They would call me ka Flora (meaning tiny Flora) I did not like it. This was when I was 20 years old but for me I was feeling okay. When I got married (28 Years of age) and had my first baby I started growing fat with a big bum and I liked it. But this weight came with problems. I was getting tired and my heart was beating hard what the doctor called palpitations. My Blood pressure also went high according to the doctor. So I needed to take medicine daily which I did. I was not happy. (IDI, Female, Hoima District)

The obese women were reported to be physically less functional. The blame was cast most on women in terms of not being able to do domestic chores compared to the men. Though most women did not mind being fat, excessive fatness was not desired as illustrated below:

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Some women fail to do domestic work. They just sit there doing nothing because they are too fat. This is not good as women are in charge of the domestic work, who else will do the work? (FGD-Men-BushenyiRugando-Mbarara)

Some of the key informants mentioned that overweight people could easily get fats around the heart which caused heart disease. Obesity was perceived as occurring among the urban dwellers and uncommon in the rural areas. Most FGD participants and key informants observed that there have been changes in people’s dietary habits over the years, especially in the urban and peri-urban areas where the population ate more of fried fast foods and less vegetables and fruits. A few participants, however, mentioned that some people feared being obese because they knew this caused diseases such as diabetes and hypertension. Some thought it was not healthy to be fat because overweight people fell sick easily. Some people especially, the young women, wanted to look fashionable when they were smaller in size. Those who wanted to lose weight wanted to be models or did it for health reasons and comfort. Most participants especially in the rural communities mentioned they rarely get information on overweight and obesity and did not know where to get it because obesity was not a problem in their communities. We have never received any information telling us about the dangers of getting fat. We get information on Malaria, HIV, how to feed our children well, and family planning. (FGD-rural Women-Hoima)

Most participants reported they received advice on overweight and obesity from health workers whenever they went to the health centre for other conditions. However, some got information from friends, radio and Television and on posters from Ministry of health. Those who went to the health centres were told to avoid getting NCDs by eating a balanced diet. They were also told to do exercises as they grew older. Others got information from schools, friends, health talks on radios and TVs that eating fatty foods could make fats accumulate near the heart and cause elevated blood pressure and heart disease.

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Prevention of Overweight and Obesity Participants discussed ways to prevent overweight and obesity. Almost all participants mentioned that adherence to a balanced diet, taking a lot of fruits and vegetables, drinking much water and doing exercise to shed off excess fat was the best way to keep off overweight and obesity. They further discussed that avoiding fatty, deep fried foods, red meat, sugary foods and beer would keep off overweight and obesity. They noted that government should provide information on its causes, prevention and management. Some participants in the rural settings however did not know what precautions to take to prevent overweight and obesity and they felt there was no need for such a prevention. For us here in Gulu we do not think people need to do anything to avoid being fat, the conditions we live in can make you shed off the excess what automatically. But then people here want to be fat and they admire fat people. They think they do not have problems especially financial. (FGD, Male Kanyogoga-A-Bar-Dege-Gulu)

Discussion In this chapter, we sought to understand the social and cultural construction of overweight and obesity risk and prevention in Ugandan communities using qualitative data collection methods of data collection and analysis. The emerging evidence explained the etiology, socio-cultural perceptions and risks associated with overweight and obesity and prevention strategies. Various perceptions regarding obesity and overweight were expressed by the study participants.. Our study found that weight gain was perceived to be desirable, a sign of respect and wealth and a status symbol. It was synonymous to wealth, health, prestige, contentment, looking good and so a need to maintain that state. Being thin was perceived as lacking essentials, not having much to eat, with problems or with a disease (HIV) and on face value, likely to be considered poor. Perceptions were that respect was believed to be more accorded to overweight and obese people than the thin people. There was a perceived view

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that people who were obese were well off and had what they needed in life and even if they did not have money people saw them as contented. Such socio-cultural norms are important determinants of body image leading to obesity. Similar findings found that among the black South African population, larger body size is considered to be a sign of beauty, prosperity and good health (Micklesfield et al., 2013). Such desirable social norms would partly contribute to overweight and obesity. Thus in exploring concepts of obesity, culture significantly influences individual perceptions of obesity (Davidson & Knafl, 2006). Cultural constructions of obesity are understood through cultural understandings of a larger body size and implication on health and wellbeing (Batnitzky, 2011; Tuoyire et al., 2016). In the same vein, our study found that weight loss was not desired as the people interviewed perceived this as a sign difficult life, stressful events and diseases such as AIDS. This is in contrast to other studies which reported a rapid globalization of fat stigma where obese people are increasingly viewed as ugly, undesirable, lazy or lacking in self-control (Brewis et al., 2016). But there is increasing positive attitude and sentiment towards obesity, where the socially accepted normal body weight is shifting towards heavier weight (Chen et al., 2018; USA Today, 2017). Some of the conversations with our participants did not show much about fat stigma rather than indicating the young generation being more concerned to keep slim. Contrary to findings from the developed countries where obesity is more evident among the poor (Flegal et al., 2006), our study showed that the well off or the rich were perceived to be more likely to be obese than the poor. In addition, obesity was perceived to be common among those in urban areas compared to rural areas. Our findings corroborate what Olufunke and Lumbwe (2014) found in South Africa where the rich were more likely to be obese than their poorer counterparts. Physical activity in rural areas as reported was not an issue but the urban and wealthier people seemed not to have time for physical activity. Physical activity is more common in rural areas than urban areas because rural populations have agriculture as their main occupation and they rely on walking for transport. In the urban areas, busy lifestyles leave people with little time to participate in physical activity. Most people in the

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urban areas have sedentary jobs such as office work and use vehicles or motorcycles as means of transport. Some of those who are in the informal sector may not move a lot as their work is not demanding. Wardle et al. (1999) show that men with low socioeconomic status are more likely to be employed in work that is physically demanding, thus may have a lower risk of obesity than men who are well off. Hence physical inactivity is a big factor in increasing obesity among the urbanites. Similarly, Olufunke and Lumbwe (2014) found that increased economic activity in South Africa has led to higher employment among men, particularly in professional, managerial or administrative work that promote sedentary behaviour. Most of our rural participants were unaware of the negative health consequences of overweight and obesity. Even if obesity is unhealthy and a risk factor for NCDs, this study found that a few people are aware about the negative effects of obesity unlike other studies that associated weight gain with the presence of multiple physical symptoms, discomfort, breathlessness, fatigue and low energy (Agne et al., 2012). In this study, the lived experiences of those who were overweight or obese reflected the self stigma, marital inabilities and the failure to do the daily chores especially those that needed mobility. This is in line with Simfukwe et al. (2017) who noted that obese health workers found it difficult to interact physically with their clients, as their size limits their mobility and their ability to handle patients. Hence an important finding in this study is that most people interviewed were not aware of the dangers of overweight and obesity and saw no reason to engage in physical activities, after all, most of the rural people’s source of livelihood is labour intensive and involves a lot of walking. In addition, the use of bobaboda (motorcycles) is making people walk less than previously which might increase risks to NCDs. However, some are beginning to understand the dangers of being obese that may lead to other diseases such as hypertension and diabetes. Further eating habits and the type of foods eaten were perceived to cause obesity. Urban residents were eating a lot of convenience, oily and fast foods thus increasing their obesity. Consistent with other studies, overweight was connected to wealth especially among rural participants. Cultural and social norms associated overweight and obesity to being

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well off and healthy which may curtail health education prevention efforts. (Appiah et al., 2016). This study builds upon previous qualitative research findings that body images are culturally constructed and may interfere with health promotion messages in the prevention of non-communicable diseases. Being culturally engrained, expectations of dealing with the health consequences of overweight and obesity should begin with the understanding of cultural patterns and perceptions, including how obesity is perceived and internalized by the individual and the broader society.

Conclusions The findings of this study contribute to policy, programming and future research on NCDs in general and obesity in particular. There is therefore a need for targeted health education campaigns especially at community level but also using mass media with emphasis on understanding the causes of obesity and the associated risks. The study indicated that unhealthy dietary practices such as eating oily fried food is perceived as the main cause of obesity and overweight, deemphasizing other factors such as inactivity. Health education messages should emphasize a holistic approach on the causes of obesity, its associated risk factors and prevention measures. Social and cultural factors that have a bearing on obesity and overweight if not accompanied with health education may increase the risks of non-communicable diseases. The community members should be targeted with appropriate health education messages to understand the health risks associated with obesity and overweight and the options to healthy lifestyles that includes regular physical activity and affordable healthier diets to change the attitudes towards overweight and obesity. Different communication channels for information on prevention and routine check-ups are suggested. These include use of interpersonal communication through face to face education such as one on one counselling and small group teaching; mass media campaigns on television, radio, billboards, print, internet, social media platforms such as Facebook, Twitter, WhatsApp; special events;

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skills building healthy eating community programs that include awareness of healthy foods and food preparation and skill building physical activity community programs that teach people to incorporate physical activity into their everyday transportation, work practices and leisure activities.

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8 “… I Had to Do This to Survive”: HIV Risk Environment of Female Street Sex Work in Nigeria Ediomo-Ubong E. Nelson

Introduction Female sex workers constitute a diverse group working in a wide array of contexts. They face disproportionate burdens of HIV, HIV risk and limited access to healthcare services (Beyrer et al., 2015). Sub-Saharan Africa bears the brunt of HIV among sex workers, with the highest proportion of global sexual transmission of HIV in sex work (17.8%) occurring in the region (Prüss-Ustün et al., 2013). Sex work risk varies with industry sector, with street sex workers facing disproportionate risk of HIV transmission (Wechsberg et al., 2006). Structural and gendered inequality, endemic poverty, homelessness and limited economic options compel women to turn to street sex work for survival, increasing the likelihood of high risk behaviours and HIV infection (Amaro & Raj, 2000; Basu, 2010; Gysels et al., 2002; Wojcicki & Malala, 2001). Ethnic migrants, in particular, face limited economic options and often choose E.-U. E. Nelson (B) Centre for Research and Information on Substance Abuse, Uyo, Nigeria © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_8

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sex work as a means of income generation for survival (Agustin, 2004; Guven-Lisaniler et al., 2005; Van Blerk, 2008). Female street sex workers work in isolated and dangerous environments that heighten the risk of violence from multiple perpetrators (Deering et al., 2014), including clients, police and pimps (Mittal et al., 2017; Okal et al., 2011; Sherman et al., 2015; Syvertsen et al., 2013; Wechsberg et al., 2006). Globally, the dominant legal framework for the control of sex work is criminalization, which undermines sex workers’ right to police protection and legal recourse, and creates vulnerability to human rights violations and negative health consequences, including unprotected sex and HIV infection (Muldoon et al., 2015; Shannon & Csete, 2010; Sherman et al., 2015). The intersecting structures of criminalization and stigmatization foster working conditions that place sex workers at high risk of violence and poor health (Krusi et al., 2016). Structural stigma, mediated by social conditions, cultural norms and institutional policies, foster social exclusion (Link & Phelan, 2001; Parker & Aggleton, 2003), and adversely impacts the well-being of stigmatized groups (Hansen et al., 2014; Hatzenbuehler & Link, 2014). Sex workers are particularly vulnerable to HIV transmission through gendered violence and unequal power relations with drug-using intimate partners, which compromises their ability to negotiate sexual and drug risk reductions (Choi & Holroyd, 2007; Shannon et al., 2008; Wechsberg et al., 2005). Substance abuse is pervasive in street sex work (Cusick & Hickman, 2005) but while its use may ameliorate the shame of soliciting clients and enable sex workers cope with co-morbid trauma, violence, guilt and anxiety, this create vulnerability to violence and undermine condom negotiations (Coupland et al., 2019; Romero-Daza et al., 2003; Wechsberg et al., 2005). Substance use exacerbates structural stigma and creates barriers to utilization of healthcare services (Kurtz et al., 2005; Lazarus et al., 2012; Nelson & Abikoye, 2019; Scorgie et al., 2013; Smith & Marshall, 2007). HIV risk behaviours are “intricately woven into the fabric of (macro)power relations” (Bourgois et al., 1997). Sex work risks therefore needs to be contextualized within broader relations of structural inequality (Shannon et al., 2008). Structural violence describes social arrangements that contribute to inequities in a manner that constrains human

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agency and increase harm for vulnerable populations (Farmer, 1996; Kleinman, 2000). The normalization and everyday internalization of structural violence via stigmatization and policing practices renders it invisible, reproducing a disorder described as “oppression illness”, which is the effect of social mistreatment that manifests as reduced self-efficacy, fatalism and high risk behaviours (Singer, 2004). The institutionalization and legitimation of structural violence through policing practices reinforces and obscures the abuses and injustices that sex workers experience (Platt et al., 2018). Research on HIV risk among sex workers in Africa are mostly driven by concern for the potential bridging of HIV transmission from sex workers to the larger population, often neglecting sex workers’ own HIV risk as well as their need for healthcare and HIV prevention services (Scorgie et al., 2013). This encourages demonization of sex workers (e.g. sex workers as “vectors of infection” driving the HIV epidemic) and supports punitive measures, mandatory registration, forced rehabilitation and involuntary HIV testing and treatment (Decker et al., 2015). Further, studies addressing sex workers’ vulnerability to HIV infection mostly consider individual and inter-personal risk factors. There exists a need for research investigating the wider structural context of HIV risk in sex work. The importance of such research is underlined by the enormous burden of HIV and other blood-borne diseases among sex workers in the region, and the glaring absence of evidence-based structural HIV interventions. This paper seeks to fill these gaps by exploring the HIV risk environment of street sex work in Nigeria.

Theoretical Framing The “risk environment”, a coalescence of approaches from social epidemiology, political economy and sociology of health (Goldenberg et al., 2011), provides a framework for exploring HIV risk among street sex workers. It is defined as the “space, whether social or physical, in which a variety of factors interact to increase the chances of harm occurring” (Rhodes, 2009, p. 193). Different types of environments (physical, social, economic and legal) interact at various levels of impact (micro,

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meso and macro) to produce risks. From this perspective, populationlevel risks are shaped by the different impacts of social, structural and environmental factors on lived experience (Rhodes, 2009). Since risk is socially situated, the framework emphasizes the dynamic and reciprocal interactions between individuals and environments, where environments constrain as well as enable personal agency (Giddens, 1984). Researchers have described the ways social, structural and environmental factors, including structural and gendered inequalities, legal frameworks, policing practices, cultural norms and physical environments, interact with individual behaviours to increase vulnerability to HIV in sex work (Rhodes et al., 2008; Shannon et al., 2008). By expanding responsibility for HIV to include structural-environmental factors, the risk environment framework shows the inadequacy of individual-level interventions by themselves to achieve population-level reduction in HIV transmission (Frohlich & Potvin, 2008; Syme, 2004). It further highlights the importance of structural HIV interventions to create an “enabling environment” for HIV risk reduction. The risk environment framework is applied in this study to understand social-structural factors influencing HIV risk among sex workers in order to inform and support interventions to prevent the transmission of HIV in this population.

Methods Located between latitude 5.05 North and longitude 80 East, Uyo is both a local government area and the administrative capital of Akwa Ibom State in Nigeria. The 2006 national census gave an estimated population figure of 309, 573 people in Uyo. While the city has experienced demographic growth, infrastructural development and social services provision, including healthcare, housing, electricity and water is inadequate. Commerce, services, as well as administrative, or salaried positions, mostly in the civil service, are the mainstay of the economy. An estimated 51% of the population lives in absolute poverty (National Bureau Statistics [NBS], 2010) and most earn a precarious living from toiling in a poorly regulated informal sector, including sex work (Nelson,

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2012). Sex workers (n = 27) were recruited through venue-based snowball sampling based on contacts built through outreach. The criteria were being a current female sex worker, defined as exchanging sex for money in the previous month, and working mostly on the streets. Qualitative data were collected through in-depth, individual interviews involving open-ended questions that were revised in the course of data collection. Each participant gave consent to be interviewed by signing a consent form. Interviews were audio-recorded with the consent of each participant, transcribed verbatim and checked for accuracy. Data analysis followed a thematic approach, which sought to identify patterns of meaning in the data-set (Campbell et al., 2013). Selected representative quotes are used for illustrations along with pseudonyms (Sex Worker) and age at time of interview (e. g. Sex Worker 1: 28) to protect the identity of participants. The socio-demographic characteristics of the participants have been described elsewhere (Nelson, 2019). The study was approved by the Health Research Ethics Committee of the Ministry of Health, Akwa Ibom State.

Findings Poverty and Sex Work Risks Participants’ accounts highlighted the ways poverty influenced women’s decision to embrace street sex work and shaped vulnerability to HIV infections. Sex workers’ poor socio-economic conditions and lack of adequate formal schooling constrained opportunities for formal sector employment, increasing vulnerability to embracing street sex work. Participants described how they opted for street sex work as a means of survival in the context of entrenched poverty. Things are very hard. I had to do this (sex work) to survive. I have no hand work (specific job training), like other women of my age. I did not

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go to school much so I cannot get good work to do. This is the only work I can do to feed myself.

– Sex Worker 1: 23 The women’s decision to embrace sex work was often unplanned and influenced by financial exigencies. Sex Worker 2: 28, said, “I started doing it (sex work) when I needed money badly because I had to pay my daughter’s school fees”. Loss of employment and the desperate need for a means of income for survival also influenced the decision to embrace sex work for others. Sex Worker 3: 24, described how she started selling sex after she lost her job as a sales girl at a bar. When I lost my job, I had nothing else to do and life was very hard with me. I used to stay for many days without money to take care of myself. So I joined my friends and they hooked me up with some of their customers (clients).

– Sex Worker 3: 24 Poverty also featured in migrant sex “workers” accounts of the decision process. Sex Worker 4: 28 and an ethnic migrant, described how a relative invited her over to Uyo to take up a job after the death of her father who was the family’s breadwinner. When the job was not forthcoming and she was kicked out of her accommodation, she moved in with a friend who introduced her to street sex work. She described her decision to enter the trade as a desperate effort for survival. I didn’t know what to do. The job was not there and I had no place to stay. I couldn’t go back home because no hope, and no money to even go back home. I had to find a way to survive. I used to sit at bars looking for men who want girls for the night. I met other girls there and started working with them on the street.

– Sex Worker 4: 28

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In other cases, poverty and gendered relations of unequal power created vulnerability to sexual coercion and subsequent entry into street sex work. Sex Worker 5: 30, reported borrowing money from a neighbour to make up her accommodation rent. Since she could not repay the loan, the neighbour insisted on having sex with her in exchange for the money. She, having limited options, gave in to his demand. She then started exchanging sex for money with men to meet her financial needs. I owed my neighbour money, which I could not pay. He said I should pay him his money or he must have sex with me in place of the money. I didn’t want to, but I had no choice. After all, I owed him money. After that, I thought I can do this to pay my bills. What is there? After all, I have already done it.

– Sex Worker 5: 30 Desperate need for money and fierce competition for clients among street sex workers forced women to keep fees for sexual services low. The highest amount sex workers charged per service was five hundred naira ($1.39). For this reason, they worked under conditions that exposed them to grave risks so as to increase their earnings. This included working for long hours, on many days and in potentially risky environments. The money they pay is not much, so you just have to hustle, take many customers so you can make as much as possible. You cannot say I am not going to work today. What will you eat? You have to work to get little money to feed yourself.

– Sex Worker 6: 23 Although sex workers physically screened clients before accepting them for services to reduce the risk of violence (this point is elaborated in the following section), they may take on potentially dangerous clients due to economic pressures. Sex Worker 3: 24 said, “But sometimes you don’t even care who you are going out with; addict, criminal and all. You take anyone who comes because you want the money so badly”. Other

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interviewees also indicated that sex workers would agree to sex without condom with clients who compensated for unprotected sex with better pay. I usually insist on condoms with my customers, but if he offers better money I have to take it. At least I am getting something for the risk I am taking with my life. The problem is when you do all that for nothing.

– Sex Worker 7: 29

Lived Experience of Violence Sex workers experienced multiple forms of violence, which they described as an “everyday thing”, something that “always happens”, and as the primary harm of street sex work; “it is the most terrible thing to happen to you as a prostitute” (Sex Worker 8: 19). Clients, police and male partners were the perpetrators of violence against sex workers.

Client Violence Client violence was often related to condom use. Clients frequently refuse to use condom because it is thought to reduce pleasure during sex. While some clients would offer better pay for sex without condom, others will attempt to coerce sex workers into condom-less sex. Sex workers described how some clients remove the condom while having sex and attempt to coerce them into submission. Men don’t want to use condom. They want to have sex with you like that. They don’t care if you have HIV, or if they will give it to you. They will hit you so that you will just allow them to do what they want. Some will agree to use condom but later remove it… You know they are trouble makers. You don’t complain unless you are ready for a fight.

– Sex Worker 9: 21

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Clients may use threats, force or dangerous weapons (e.g. daggers) to coerce unprotected sex, which was experienced as a form of violence that fosters negative self-perceptions and a traumatizing sense of powerlessness. When you have sex with a customer like that (coerced sex), you feel like you are a real s**t. You feel weak, as if you cannot help yourself. It is like you are not a human being. You don’t have authority over your life. You don’t decide how you do your work. Another person decides for you. You are just a slave.

– Sex Worker 8: 19 Internalization of physical and sexual violence gave rise to self-stigma and contributed to acceptance of violence. This fits the symptoms of “oppression illness”, a label for the chronic, traumatic effects of experiencing social mistreatment (Singer, 2004). The following comment reveals internalization and acceptance of violence by sex workers: What will you do? You are just a sex worker, right? You sell your body to survive that is why they treat you like s**t. It (violence) is a common thing in this work we’re doing. You can’t help it. Or what can you do? They say you are a prostitute.

– Sex Worker 5: 30 Client violence was also linked to payment for services. Sex workers described how some clients will refuse to pay after service has been provided, and some would resort to violence to enforce their desire for free sex. These wicked men will not give you the money after they’ve had sex. They don’t want to pay. Sometimes they want to give you less than what you said you will collect. They want free sex. They treat you like s**t because they don’t want to pay money.

– Sex worker 1: 23

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Disputes over types of service also lead to violence. All sex workers in the sample reported that they don’t provide anal sex and they would inform clients of this during negotiations. Yet some clients will still attempt to force sex workers to provide anal sex. They will not say anything when you tell them that you don’t do anal, but once you start they will make trouble. They always want to force you to do what they want.

– Sex Worker 6: 23

Police Violence Street-level policing also mediated violence in street sex work. Violence (or threats) was extra-legal, used to make arrest or to obtain free sex or money. Policing practices contributed to normalization and acceptance of violence. They saw me talking with a customer so they thought I am a prostitute. They came and asked me if I knew that they could arrest me. I didn’t answer them, so they started beating me. Maybe it is ok for police to beat prostitutes, but I didn’t do them (the police) anything …

– Sex Worker 3: 24 Police violence extended beyond physical and sexual forms, and included emotional and economic violations. Extortion and public shaming were common policing practices towards street sex workers, which fueled stigma and negative self-perceptions. Sex workers described this as violation of their privacy. Police men are very wicked. They treat us so badly. They want to have sex with you for free, or they will collect all your money. If you don’t give them what they want, there will be trouble. They will disgrace you publicly, call you ‘prostitute’ and take you to their station… The namecalling is bad. You will be like, “I’ve been trying to avoid this bad name”.

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– Sex Worker 10: 26 Interviewees emphasized how police presence on the streets created fear and a pervasive sense of insecurity among sex workers, which may force them to move to remote and dangerous settings. I usually do my business around this area, but there is a check point over there. The next thing you know, they (police) will come searching for prostitutes. They are looking for free sex or money. If you say let me move into the estate to look for customers you may get into trouble. You may have a bad date, and if you shout, nobody will hear you. That area is not like this street.

– Sex worker 3: 24

Intimate Partner Violence Intimate partners, most of who were not directly involved in sex work, also perpetrated violence against sex workers. Intimate partners were mostly former clients or drug-using partners who depended on the proceeds of sex work for survival and to support their drug habits. My boy-friend knows that I work on the streets. I have to do this for us to survive. He has no work. Where will the money to buy food come from?

– Sex Worker 11: 2 Sex workers’ also described how their partners loathed their work, including for fear of HIV. This concern often triggered violence as “moral punishment”. My boy-friend gets angry when I go out to work. He does not like what I am doing. He said that I am sleeping with different men and that I can get HIV. Sometimes he gets very upset and if I do anything, he will hit me… He sees me as a bad girl

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– Sex Worker 8: 19 Intimate partner violence also took the form of sexual coercion, which reproduced self-blame and served as a mechanism of social suffering in the lives of street sex workers. My boy-friend doesn’t want to hear “I am too tired”. He will force me to have sex with him. He will say that I had sex with many people out there and I did not complain. It is all because of the work I am doing. That is the reason.

– Sex Worker 6: 23

Substance Abuse and Related Harms Substance abuse is a key part of the HIV risk environment of sex work (Romero-Daza et al., 2003; Shannon et al., 2008). Most sex workers reported exchanging sex for drugs or for money to buy drugs. An interviewee (Sex Worker 9: 21) described how she slept with a drug dealer to obtain drugs when she experienced withdrawal sickness. Others had sex with male drug users in exchange for drugs. An interviewee who cohabited with a street drug dealer at the time of interview, described the relationship as facilitating access to drugs. I decided to live with him because he used to give me drugs whenever I needed them. He used to give me drugs and I will give him sex. Now we are living together. I don’t look for money to buy drugs anymore. I look for money to do other things because he gives me drugs whenever I need them.

– Sex Worker 12: 27 Sex workers used different types of substances, including alcohol, hard drugs and over-the-counter medications (e.g. tramadol and rohypnol). Most sex workers had been using substances for over three years. Some

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said they can’t stay off their substances of choice for a day. An interviewee stated: I have been using these drugs (heroin and tramadol) for some time. I cannot stay without them. I will feel sick. I will not be able to make it through the day without taking it. I will not be able to eat, sleep or do anything for myself… I must find a way to take the drugs. That is the way it has been for me.

– Sex Worker 13: 24 Other interviewees indicated that they used drugs to facilitate soliciting and to provide sexual services to clients, most of whom are strangers. They used various substances to cope with the hazards associated with sex work, including client violence, co-morbid trauma and insomnia: We take drugs to be able to handle clients who want to make trouble.

– Sex Worker 14: 22 This work we do is very hard. It is not an easy work so you have to take hard things (drugs) to be able to survive.

– Sex Worker 9: 21 Some days I can’t sleep, so I take it (valium and rohypnol) to be able to sleep.

– Sex Worker 8: 19 Substance abuse portends negative consequences for sex workers health and well-being. Sex workers described how intoxication with substances fostered loss of self-control and vulnerability to unprotected sex. Sex Worker 8: 19, experienced unprotected sex owing to alcohol intoxication.

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One time I followed a guy out. He took me to a beer parlour and bought drinks. I got drunk and couldn’t even walk down to the car. He carried me home and whatever he did with me I don’t know… When I woke up the following day, I asked him if he used condom. He was honest and told me plainly, ‘No’. I was scared that I have gotten HIV.

Stigma and Health Service Utilization Interviewee accounts emphasized stigmatization of street sex workers by members of the public who were reported to physically and verbally abuse them. People call you names (e.g Ashawo, a Yoruba word for prostitute) when they see you standing by the streets. They say you are waiting for men. They will pour insults on you because you are doing prostitution.

– Sex Worker 13: 24 Sex workers also reported being rejected by friends and relations, and face ejection from their accommodations when their work was exposed. A sex worker narrated a lived experience of family rejection that reveals the huge cost of being exposed as a sex worker. When my family knew I was doing prostitution, they were not happy with me. They rejected me saying that I have disgraced them. As it is now, I cannot go back home. Nobody wants to see me.

– Sex Worker 9: 21 Sex work stigma has been linked to reduced access to healthcare services (Lazarus et al., 2012; Scorgie et al., 2013). Sex workers reported being mistreated by nurses at a local STI clinic, and feared that exposure of their drug habits will increase stigma. A woman who uses drugs will be cursed by doctors and nurses when they know about her drug habit. They will call her all sorts of names.

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Men who use drugs are despised by other people. What do you think will happen to a woman who uses drugs? Are women supposed to use drugs?

– Sex worker 12: 27 On her part, Sex Worker 15, aged 24 recalled being treated with disdain by nurses because she was known to be a sex worker asking “What do you think they will do to me if I told them I use drugs?” Fear of stigma and discrimination forced sex workers to keep both their work and drug habits secret, restricting access to medical treatment when necessary. I don’t want to be called bad name. I don’t want anyone to call me ‘prostitute’. If I go to the hospital, people will know that I use drugs and they will begin to call me all sorts of names. My family members may even get to know what I do for a living. They may throw me away saying that I have given the family a bad name. I don’t want that to happen so I keep things to myself.

– Sex worker 7: 29 The discriminatory attitudes of health workers towards sex workers also increased fears the former could collude with the police to have them arrested. Going to the hospital will expose you. What makes you think that you will not be arrested by the police? I don’t trust some of these hospitals. The nurses and doctors could be working with the police, and you get picked up when you show up there.

– Sex Worker 16: 30

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Discussion The study explored the HIV risk environment of street sex work in Nigeria and how poverty and lack of viable employment options lead the interviewees to embrace a stigmatized profession which increases vulnerability to HIV transmission. Entrenched poverty, homelessness and drug addiction have been shown to influence women’s choice of sex work (Gysels et al., 2002; Shannon et al., 2008; Wojcicki & Malala, 2001). For the women in this study, sex work was a rational, economic strategy adopted to meet basic subsistent needs in the face of large-scale structural and gendered inequalities (Shannon et al., 2008) and for ethnic migrants, it’s an option for survival (see Agustin, 2004; Guven-Lisaniler et al., 2005; Van Blerk, 2008). Findings also show how limited economic options and relative powerlessness reduces incentives for safe sex practice and elevates the risk of HIV infection. The need to make income for basic survival takes precedence over concern with HIV prevention, undermining condom negotiation and increasing the risk of HIV infection (Basu, 2010). Sex workers’ accounts support the view that poverty is a key macrostructural factor shaping risk behaviours for HIV (Amaro & Raj, 2000; Shannon et al., 2008; Wojcicki & Malala, 2001). Structural factors, however, do not preclude women’s agency and choice in relation to entry into street sex work. Instead, as the women’s accounts highlighted, women chose street sex work as an option for survival in the context of structural and gendered inequalities and limited income generating opportunities. This shows the reciprocal and adaptive interaction between individuals and risk environments (Rhodes, 2009), where environments constrain as well as enable personal agency, and are therefore produced and reproduced by individuals’ practices (Giddens, 1984). This refutes the suggestion that sex trade takes place under conditions of un-free labour, and highlights the need to recognize women’s agency and relative choice in contemporary sex work policy. Sex workers experienced multiple forms of violence from different perpetrators, which extended beyond physical and sexual to include violations of dignity and self-worth (Simi´c & Rhodes, 2009). Violence shapes the working conditions, health and safety of sex workers (Krusi

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et al., 2016), and poses as a significant barrier to HIV prevention (Mtetwa et al., 2013). Intimate partner violence against sex workers is common, including from partners who are not directly involved in sex work (Mittal et al., 2017; Syvertsen et al., 2013). It is a means of extortion and moral punishment of sex workers (Nelson & Abikoye, 2019). Clients are major perpetrators of violence against street sex workers, using violence to coerce free or cheaper sex, unprotected sex and unnegotiated sexual services. Client violence forces sex workers to prioritize violence or the threat of violence over attempts to insist on condom use (Wechsberg et al., 2006). Coerced unprotected sex with clients and intimate partners explains sex workers’ vulnerability to high rates of HIV infection compared to the general population (Shannon & Csete, 2010). Street-level policing, involving crackdowns, arrests, extortion, humiliation and physical and sexual violence, displaces sex workers to unfamiliar and isolated working environments where there is little chance of receiving help (including medical services) when needed, elevating the risk of physical and sexual violence and constraining sex workers’ ability to negotiate condom use with clients (Okal et al., 2011; Shannon et al., 2008; Sherman et al., 2015). Lack of legal protection for sex workers institutionalize and legitimize violations of sex workers’ rights (Platt et al., 2018), thereby rendering violence invisible. It also creates a climate of impunity, encourages under-reporting and failure to recognize sex workers as deserving protection, care and support (Krusi et al., 2016). Findings show a significant problem of substance abuse among sex workers, involving exchange of sex for drugs or for money to buy drugs, and formation of sexual relationships to sustain drug habits. This supports the view that the problem of substance use and street sex work are mutually reinforcing (Cusick & Hickman, 2005). Sex workers used substances to cope with co-morbid trauma, including violence, guilt and anxiety. This resonates with previous research with substance-using women in street sex work. Romero-Daza et al. (2003) described how street sex workers who suffered violence and victimization turned to substance abuse to deal with the brutal realities of everyday life in the absence of support services. Coupland et al. (2019) show how female

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entertainment and sex workers used substances to control pervasive feelings of sadness fueled by lived experience of poverty, and family and relationship problems. Research further indicates that substance-using women in street sex work are highly vulnerable to HIV infection through gendered violence with clients and drug-using intimate partners that compromise their ability to negotiate sexual and drug risk reduction (Choi & Holroyd, 2007; Shannon et al., 2008; Wechsberg et al., 2005). Findings also identified stigma as an aspect of the HIV risk environment of street sex work. Sex work stigma includes public derision, family rejection and discrimination by health workers. Spatial displacement of sex workers fostered by societal stigma has been recognized as a “geopolitical” strategy in the repression of sex work (Hubbard, 1998), which constrains access to healthcare services (Lazarus et al., 2012) and HIV prevention (Scorgie et al., 2013), and increases the risk of violence (Rhodes et al., 2008). Stigma is exacerbated by substance abuse, contributing to destitution and erosion of social support, and creating barriers to utilization of substance abuse treatment (Kurtz et al., 2005; Nelson & Abikoye, 2019). Internalization of stigma by sex workers reproduced “oppression illness”, which is the product of suffering social maltreatment that fosters reduced self-efficacy and high risk behaviours (Singer, 2004). Stigma also arose from interactions with health workers, which reflected broader societal stigma surrounding sex work and involved negative judgments and discriminatory practices that discouraged women from seeking services. Thus, the findings align with previous research which shows that sex workers are reluctant to seek services for fear of stigma (Lazarus et al., 2012). Stigma makes service utilization difficult and encourages disengagement from services (Smith & Marshall, 2007). The women’s accounts further show a link between stigma and criminalized sex work environments, whereby a possible collusion between health workers and law enforcement agents is assumed (Nelson & Abikoye, 2019). This supports the view that laws regulating sex work speaks to stigma associated with sex trade and the link between sex work legislation and morality (Bruckert & Hannem, 2013). It also emphasizes the role of power and structural inequalities in mediating stigma and social exclusion of vulnerable populations such as female street sex

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workers (Link & Phelan, 2001; Parker & Aggleton, 2003), whereby social conditions, cultural norms and institutional policies constrain the opportunities, resources and well-being of stigmatized groups (Hansen et al., 2014; Hatzenbuehler & Link, 2014).

Conclusion and Policy Responses Entrenched poverty, structural and gendered inequality, violence, substance abuse and stigma form parts of the HIV risk environment of street sex work. There is a critical need to shift policy on sex work towards decriminalization and provision of regulated premises for sex work. This is essential for protecting sex workers’ health, safety and labour rights. Changing societal perceptions of sex workers and facilitating improved access to appropriate and non-judgmental health and HIV prevention services should be important objectives of interventions seeking to improve sex workers’ health and well-being. Furthermore, drug addiction and prolonged involvement in sex work means that peer-driven outreach models are needed to facilitate entry and engagement with services, including substance abuse treatment. Economic deprivation influence entry into sex work and creates vulnerability to unprotected sex and HIV transmission. Economic empowerment measures (e.g. microfinance schemes) are needed to improve sex workers’ living conditions, contribute to HIV prevention and facilitate exit from street sex work.

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Wojcicki, J. M., & Malala, J. (2001). Condom use, power and HIV/AIDS risk: Sex-workers bargain for survival in Hillbrow/Joubert Park/Berea Johannesburg. Social Science & Medicine, 53(1), 99–121.

Part V Reproductive Health, Traditions and Beliefs

9 The Sociolinguistic Functions of English and Chichewa in Gynaecological Consultations in a Chichewa Speaking Hospital Setting in Malawi Marion Chirwa Kajombo

Background The status of gynaecology in Malawi may not be regarded as one of the best in the world. The World Health Organisation (2014) report titled: Trends in Maternal Mortality: 1990 to 2013 shows that sub-Saharan Africa had the highest Maternal Mortality Rate (MMR) estimated at 510, which is 14 times higher than developed regions estimate of 16. Malawi’s MMR of 510 is equal to the sub-Saharan Africa average with estimates for Chad at 980 and Nigeria at 560. As of 2006, Malawi’s fertility rate was at 6.3 children per woman while the infant mortality rate was 69 per 1000 live births (NSO, 2006). Research has shown M. C. Kajombo (B) Faculty of Arts and Social Science, Stellenbosch University, Stellenbosch, South Africa e-mail: [email protected] Malawi University of Science and Technology (MUST), Limbe, Malawi © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_9

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however that these high rates may be attributed to how maternal healthcare delivery is handled (Combs Thorsen et al., 2012, 2014). This chapter accounts for the use of two languages by gynaecologists and their simulated patients in a cultural setting where some topics under discussion are linguistic taboo. According to Gumperz (1982: 75) when bilinguals use one language and not the other, or switch from one language to another in conversations, their choice is a code that is understood by people with whom they share language and experiences. This chapter argues that in the Malawian gynaecological consultation, where Chichewa a national lingua franca is the default language, the switch to English may be initiated by the need to either use acceptable medical terminology or the need to save face. This is an argument based on data collected in a qualitative research through one-on-one interviews and simulated consultations with Blantyre based male obstetricians and/or gynaecologists. Gynaecologists were initially selected based on their gender and availability. The women were a purposeful sample of Malawian women living in Blantyre, Malawi who had visited a gynaecologist not more than a year before the time data was collected. The discussion is preceded by a preliminary presentation of the medical and cultural setting of Malawi. These are then followed by discussions on how both Chichewa and English are used with examples and explanations drawn from collected data. The Ministry of Health is the overseer of medicare services in Malawi. There are three types of health care service providers classified as the public, the private for profit and the private not for profit clinics (Makwero, 2018). The public health sector has three tiers namely the primary, secondary and tertiary care levels (Makwero, 2018, p. 1) and Health Centres offer ambulatory and maternity services within an area of a district and in urban areas they may serve a population of 237,000 (Makwero, 2018, p. 2). There are 26 district hospitals, whose staff members at every hospital include about one to two doctors, 10– 20 clinical officers and medical assistants, all assisted by nurses and serve a population of between 140,000 to 1,400,000 (Makwero, 2018, p. 2). Maternal health services in public health care centres in Malawi are administered by midwives, clinical officers, general practitioners and gynaecologists/obstetricians (Combs Thorsen et al., 2014, p. 2)

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depending on the tier the clinic falls into. Complicated maternity cases are referred to gynaecologists and/or obstetricians at central hospitals. However, it is possible to pay for specialised care at central hospitals even when there are no complications. Records show that from 1992 to 2002, 79.6% of graduates from the College of Medicine, the only doctor training institution in Malawi, were male (Muula et al., 2004, p. 637). Therefore, it can be argued that, when seeking specialised medical care in central or private clinics, women are more likely to find themselves in a male gynaecologist’s and/or obstetrician’s consultation room.

The Role of Communication in Medical Consultations As Foucault (1973) explains, the French Revolution presented a new approach to medicine through the establishment of what is currently known as the clinic, which requires physicians to use their experience and knowledge to diagnose and treat conditions and ailments they examine and/or as explained by a patient. Thus, the basis of diagnosis and treatment is the clinical gaze, which is mostly guided and controlled by the physician themselves during consultation. A medical consultation is an interview process whose functions according to Roter and Hall (2006, p. 100) include gathering data and facilitating patient disclosure, patient education and counselling, partnership building and emotional responsiveness. This makes communication an integral part of any medical consultation (Kamwendo, 2004, 2008) including gynaecological consultations which involve a female patient who seeks medical assistance on female sexuality conditions and functions such as menstruation, pregnancy, cervical and breast cancers.

Language Setting The challenge in post-colonial African countries is that they are multilingual societies where a former coloniser’s language, English, in the case of Malawi, is the official language (Downing & Mtenje, 2017, p. 1). Apart from English, Malawi has a variety of indigenous languages that are the mother tongues for most Malawians. Three of such languages were

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designated the national language status alongside English. Chichewa was designated in 1968, four years after Malawi gained independence from Britain and it was joined by Chiyao and Chitumbuka in 1994 following the installation of the first democratically elected government (Downing & Mtenje, 2017, p. 1). The later national languages are mainly lingua francas in their respective regions, but Chichewa is more of a national lingua franca given its long historical and political development. It is thus not uncommon that mass campaigns on health matters carried out in local languages are mostly translated from English into the linguafrancas. For national campaigns, Chichewa would be the first choice and the other languages may be optional depending on the need and other issues such as availability of resources.

Cultural Setting The term Malawian culture in this chapter refers to the common culture shared by Malawians from a variety of cultures living in Malawi, established as a result of sharing common spaces, aspirations and laws. It is a culture which is unique to Malawians as may be seen in matters such as weddings, funerals, food, dressing, aspirations and general outlook on life. Malawi can be described as a conservative nation and this is sometimes attributed to 31 years of dictatorship (Mtenje, 2018, pp. 216–219) under Dr Hastings Banda, but Munthali (2017) argues that in rural areas, the disciplinarian culture under the guardianship of chiefs, has made Malawians to fear the unknown. Both urban and rural populations in Malawi were exposed to a history that Tamale (2011, p. 16) describes as one of the two worst dictatorial laws on dress codes in Africa by Dr. Banda, and calls it “a new script, steeped in the Victorian moralistic, antisexual, body-shame edicts (on women’s bodies)”. Thus, the observance of the law with fear, also applies to cultural norms regarding public discussion of bodies, reproductive health, and HIV and AIDS (Mkandawire, 2012). The conservative approach to public discourse was formalised in 1968, again, four years after Malawi’s independence from the British, by the establishment of a Censorship Board under the Department of Culture, enacted through the Censorship and Control of Entertainment

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Act, Chapter 21. An example of the control that this board exercises over the type of language used in public reference to women’s bodies is the rejection of performance licence to Blackmore PR’s production, Vagina Monologues in 2015, a production that discusses taboo topics concerning women’s bodies and sexuality among others (Sangala, 2015). The assignment of the taboo label is determined by culture.

Communicating Taboo Linguistic taboos are cultural constructions that forbid the use of particular expressions because they are believed to cause harm or discomfort once stated (Allan & Burridge, 2006, p. 1). It is expected that competent speakers normally conform to cultural restrictions (Allan & Burridge, 2006, p. 2). However, language users always have a choice of linguistic forms to use (Jones, 2012, p. 6). According to Allan and Burridge (2006, pp. 33–34), a language user has three options when faced with a linguistic taboo and these are namely the dis-preferred, known as a dysphemism (“… is not preferred, not desired and not appropriate like “shit”) and the preferred which is split into the formal and direct called orthophemism (like “faeces”) and the informal and indirect called euphemism (like “poo”). Although the dysphemism is typically dispreferred and often taboo, it may be acceptable in particular contexts (Allan & Burridge, 2006, p. 32; Saville-Troike, 2003, p. 211). It is common for people to use the preferred x-phemisms (dis-preferred or preferred) as Goffman’s (1967)’s theory of the face suggests that interlocutors prefer working on their face, in other words, maintain a positive social value through their choice of words. However, conformity to such prescriptions is subjective to context where society norms are filtered (Gumperz, 2015, p. 311).

Understanding Code Switching Gumperz (1982b, p. 75) argues that when bilinguals use one language and not the other, or switch from one language to another in conversations, their choice is a code that is understood by people with whom

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they share language and experiences. Hence, Discourse Analysis which establishes the discursive or conversational functions of code switching, becomes the initial stage of analysing code switching (1982b, p. 75). However, Gumperz (1982b, p. 75) also argues that conversational functions themselves do not fully account for the reasons why a speaker would choose to achieve those functions in another language and not the one they started off with. And he further argues that since the switches are expected and interpreted in the same way by the community of practice, then there must be a common frame of reference or a code that the community shares (Gumperz, 1982b, p. 75). This then is the domain of Interactional Sociolinguistic approach to Discourse Analysis (IS), as it provides the social reasoning behind the shift by tapping into the socialcultural knowledge shared between the interlocutors (Cordella, 2004; Gumperz, 1982b, 2015). Bearing this in mind, the discussions below account for code switching which coincides with taboo terminology. The label “taboo” is a cultural label; hence this last section is preceded by a brief on Malawian culture which gives a reflection of the setting in order to understand the constrictions on language use. This chapter is an account of the use of two languages by gynaecologists and their simulated patients in a cultural setting where some topics under discussion are linguistic taboo.

Research Questions 1. What determines the choice of language between a lingua franca and language of medicine in the Malawian gynaecological consultation? 2. What linguistic and social factors initiate the use of English in gynaecological consultations conducted in Chichewa?

Methods This chapter presents an argument based on data collected in a qualitative research on the linguistic taboo in gynaecological consultations. Data was collected through one-on-one interviews with twelve adult

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women and four gynaecologists and through simulated consultations with eight of the twelve women and all four male obstetricians and/or gynaecologists. All participants were based in Blantyre. Gynaecologists were initially selected based on their gender and availability. The selected gynaecologists were male because it is the most likely gender, as earlier explained, and there are more cultural restrictions on taboo talk across the sexes. The women were a purposeful sample of Malawian women living in Blantyre, Malawi who had visited a gynaecologist not more than a year prior to the time data was collected. The names used in this chapter have all been anonymised, in other words they are not the real names of the participants. Data was collected in Chichewa by audio recording. All interviews were conducted by the researcher. Although simulated consultations were recorded in the absence of the researcher, the recorder was operated by the researcher by being present at the on-set and the end of each consultation. General Discourse Analysis (DA) and Interactional Sociolinguistic approach to Discourse Analysis (IS), an approach explicitly outlined by (Gumperz, 1982a, 1982b, 2015) and used in similar interaction studies (see Cordella, 2004; Seale et al., 2007) were used to analyse the data. DA was initially used to classify different uses of English in Chichewa consultations. After which, it was used to establish the discursive function for code switching. IS was used to navigate the social reasons behind the code switching that coincided with linguistic taboo in gynaecological consultations.

Findings Choosing the Language for Consultation The first task is to establish how, in a multilingual setting, the doctor and the patient arrive at the choice of a language that they would use. In responding to a question on who makes the decision of which language to use during consultations, patients indicated that from their own experiences, it was the doctor’s decision as he is the first one to talk while

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the doctors said they deduce from the way the patient responds to their greeting about which language they would use. The following interview extracts between the researcher (Res) and a female participant P9 concerning how language choices are done at a private hospital: Res: Mwakambako kuti mmagwiritsa ntchito zilankhulo zitatu, mukamakumana ndi dokotala, mmagwiritsa ntchito chilankhulo chiti? You have said that you are competent in three languages, when you are consulting a doctor, which language do you use? P9 : Ndikamakakumana ndi dokotala, malingana ndi aahm zipatala zimene ndimapita, ngati ndikapita ku (mentions a private hospital), a dokotala nthawi zambiri amapezeka kuti mwina tikuyankhulana mchizungu. Not Chizungu completely , komano zinthu zambiri, zimalankhulidwa mchizungu. In consulting a doctor, depending on uuhm..., the hospitals I visit, when I go to (mentions a private hospital), the doctor usually, they are … we may end up using English. Not English throughout but most of the things are said in English Res: Chifukwa chani mmayankhula chizungucho? Why do you use English? P9 : Aaah ndikuwona ngati (mentions the private hospital above) ndikhoza kuchiyika ngati chipatala cha high class nde mwina adokotala amangopanga assume kuti munthu ngati ukupita kumenekoko, umakhala winawake onena kuti mwina chizungucho umatha kutani? Umatha kuyankhula. Nde kawirikawiri amapezeka kuti ma conversation ake akuchitika mChizungu. Uuhmm I feel that (mentions the private hospital above) can be placed as a high-class hospital, so may be doctors assume that if you go there then you must be someone who can do what? Who can speak it. So, often it happens that the conversations are in English. Res: Ndekuti amatsogola ndi adokotala kuyamba kulankhula Chizungu eti? So, should we say that it is the doctors that start using English?

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P9: Eeh adokotala amatsogola kuyankhula Chizungu Yes. The doctor is the one who starts using English.

The extract above shows that the doctor chooses the language to use by just starting to use it. The construed assumption on the use of English correlates with the elite associations alluded to by Lora-Kayambazinthu (2003, p. 147). In the elite environment above, the choice of English may be understood as acceptable and expected. It must be noted however, that some of these doctors also practice in public hospitals and may use the tactics on language choice described by the doctors themselves below. Other female participants also agree that the doctor makes the decision as he or she is in control of everything. Some patients feel that they just have to go with anything the doctor does, as one participant said “poti ndavutika ndine” (interpreted) “since I am the one who is suffering (and needs help)”. However, the doctors presented contrary views regarding the use of language and the method which they feel is accommodating. The gynaecologists indicated that they would greet a patient in the lingua franca, Chichewa and proceed if the patient is alright with it. While others indicated that depending on how they respond, they can deduce whether to use English or not, or whether to ask the respondent if they need assistance in communicating with the doctor as in the following extract: … patient aliyense timampatsa moni, nde timawona kuti wayankha muchilankhulo chanji. Nde default timamfunsa muChichewa and akayankha mchichewa. Timamufunsa kuti afotokoze vuto lake, akayambano kufotokoza mchizungu then mmatha kuwona kuti ok munthuyu mwina ali comfortable mchizungu and then you continue ndi chizungu. … every patient is greeted, then we see which language they use to respond. The default language is Chichewa, we ask in Chichewa. Then when they respond in Chichewa, we ask them to explain their issue. Then when they start explaining their issue in English, you then begin to think that the person may be more comfortable with using English. That’s when you proceed with English.

This shows that the gynaecologist considers the language needs of the patient, by not imposing their own choice. The word comfortable above

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has been translated in relation to the language itself and not the topic of discussion since the gynaecologist was responding to a question directed at how language choices are arrived at. So, the term comfortable above means competence. It can be argued that the approaches to language choice described above is a reasonable one, since Chichewa is a lingua franca at both national and local district level. At the same time, not choosing English makes the doctor approachable, since according to Lora-Kayambazinthu (2003, p. 147), English in Malawi is the language for the educated elite, which constitute only 0.3% of the population. Thus, the use of the official language in this formal setting would be construed by other patients as an elitist demeanour from the doctor. Such an interpretation might add on to the already existing asymmetry of power between the doctor and the patient. Power imbalance which may result from the doctor’s perceived authority, level of education, ability to alleviate the patient’s suffering (Cordella, 2004, p. 59) and gender (Epner & Baile, 2012). However, the subtle way of establishing which language to use may be construed as gender stereotyping and removing agency from the patient. The former would be the case of males being the decision makers while women follow, while the later would be the case of a patient who is the one seeking help being told how to present their issue. This explains why some women believe whichever language the doctor uses they have to follow, without them putting forward their own opinion, as the “poti ndavutika ndine” interpreted as “since I am the one who is suffering (and needs help)” quotation explained above. It is important to note that just because someone is fluent in Chichewa, does not necessarily mean that they would love to have a consultation in Chichewa. Directly asking the patient the option of English would be more effective as it gives them power which they assumed not to have during consultation. Doctors however may still have to set boundaries as to which languages would be permissible in their consultation.

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The Cultures Clash During Consultations The medical culture is based on western ideas and some of it appear in the requirements of the consultations. For instance, the patient is required to give their first name regardless of their age, whereas, in the Malawian cultural setting, an adult is known by their clan or kinsmen’s name and in formal settings like workplaces, their surname is used. For instance, a Dzonzi and a naDzonzi would refer to a male Dzonzis and the other refers to a female Dzonzi, while the (a) preceding the clan name is honorific. Using the clan name is one way of showing respect to the older members of society. Another similar issue is the difference in meaning that is associated with one’s cultural background. For instance, one’s family medical history may be required to help the doctor narrow down the scope of possible ailments that may need checking. In the medical culture, family medical history might be construed as every close blood relation but the translation to Chichewa used in one of the simulated consultations was as follows: 1. Kumtundu kwanu kumene muchokera alipo amene amadwala matenda osiyanasiyana? (Does anyone in your clan where you come from suffer from a variety of ailments?) (Does any member of your family or any blood relation suffer any chronic diseases?)

Firstly, from the above extract, some patients may understand the English sense, but others may concentrate on their matrilineal or patrilineal relations depending on the system that applies in their respective cultures. There may also be situations when one would only have access to medical information of one side of the family as in some instances the cultural set up may limit familiarity with either the paternal or maternal side of the family. Mwambene (2005, p. 7) explains that in a matrilineal culture, one’s clan or blood relations “fuko” may be traced through generations on the mother’s side and not the father’s. Secondly, the term translated as a variety of ailments is confusing and misleading. So, the patient may present information which to the best of their knowledge may be true,

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but might not be the whole truth as they may be limited by the cultural interpretation.

Inadequacy of Chichewa in Medical Terminology Another linguistic perspective that needs to be considered is that Chichewa has a limited medical nomenclature for issues such as illnesses, medical conditions, equipment and instruments used at the hospital. Dr Phiri (pseudo name) outlines an instance where exclusive use of Chichewa in gynaecological consultations may lead to miscommunication. …pamakhala nthawi zina poti munthuyo (wodwalayo) mwina saakumvetsetsa. tiyerekeze: muchiyankhulo cha Chichewa tikangonena kuti chotupa, wina aliyense amachitanthauzira mwakemwake. Wina chotupa aahm kwa iye akutanthauzira kuti ndi khansa. Wina chotupa akuwona ngati nchotupa basi. Nde chotupa chimenecho chikakhala kuti chili malo obisika tiyerekeze chili muchiberekero, aliyense sikuti amawona chiberekero. Nde tikumuwuza kuti chotupachi, chili muchiberekero. Zizindikiro(sic) zimene iyeyo akumva ndikutaya magazi. Nde tikamuwuza kuti ndichotupa, mwina munthu aziganizira kuti ndi khansa. Pomwe mwina sikhansa. … Osati chifukwa choti zinthuzo nzovuta kumvetsetsa, koma mmene munthuyo akumvera ndi chinthu, mmene tamuwuzira, and palibenso mawu ena abwino oposera chotupa, ayi. …there are times when the person (patient) may not fully understand you. For instance: in the Chichewa language, when we just say, “a swelling”, different people might interpret it in their own way. Some will take it as just a swelling. But if the swelling is in a place that it is not visible like in the uterus, no one can see the uterus. And then we are telling her that the swelling is in the uterus. The signs (sic) that she sees is bleeding. So, when we tell her that it is a swelling, she may even be thinking that it is cancer. And yet it might not even be cancer. It is not because the things are difficult to understand, but the way the patient feels … and the way we have told her. And there is no other better term to use than ‘a swelling”, no.

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In the scenario above, Dr Phiri shows a possible instance of miscommunication which may rise from the use of a Chichewa terminology which generalises and not specifies the type of illness the patient has been diagnosed with. The gynaecologist in this interview further explained that this may result in the patient being unsatisfied and may seek a second opinion from other doctors or hospitals, because she may perhaps feel that she is developing cancer and needs to be operated on. English is the language all the participating gynaecologists were trained in and has a well-developed medical vocabulary. Doctors in Kamwendo (2008, p. 320)’s study at Malawi’s Mzuzu Central Hospital stated that it was easier to communicate medicine in English among themselves. The pull of the English vocabulary and familiarity of the processes in English is as a result of training that have been conducted in English, just like the rest of the Sub-Saharan region, which according to (Mullan et al., 2011, p. 1118) mainly uses English with a few exceptions where Arabic is used. This may lead to the use of English on different levels during Chichewa consultations. However English use is not initiated by doctors only, but by patients as well. Thus borrowing, code mixing and code switching were the ways in which English was used in Chichewa normative gynaecological consultations. The complete switch to English was not observed in this study as the participants were requested to use Chichewa, however, despite this, the simulated consultations were not completely conducted in Chichewa.

Using English in Chichewa Consultations Lexical Borrowing and Code Mixing According to (Gumperz, 1982b, p. 66) “borrowing can be defined as the introduction of a single word or short, frozen, idiomatic phrases from one variety into the other. The items in question are incorporated into the grammatical system of the borrowing language. They are treated as part of its lexicon, take on its morphological characteristics and enter into its syntactic structures” (Gumperz). Terms that were borrowed in the

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study include: hormones, symptoms, speculum, screening, blood pressure, syphilis, Caesar, normal and suspect cancer. Borrowing was done by both the gynaecologists and patients and were extracted from sentences like this one from a patient: Anangondithandiza ma pain killer . ‘They just gave me pain killers’.

The borrowed term “pain killers” uses the plural morpheme ma from Chichewa, ascertaining Gumperz (1982b, p. 66)’s explanation of how borrowed terms are handled in the borrowing language explained above. The same system is found in the extract below which is from a simulated consultation, where the gynaecologist was taking a patient’s family history and uses English term to qualify and/or clarify his Chichewa term. It is used here as an example of how terms may be introduced in a consultation. …palibe amene anawapeza ndi vuto loti mwinamwake chiberekero akuti iyayi chotupa masikwano amati ma fibroid , fibroids, Ayi? ‘…has anyone ever been diagnosed with a problem may be like being told that the uterus, may have a swelling, which in modern times are called fibroids, fibroids, No?’

In the above extract Dr Tembo (pseudonym) works around the problem discussed by Dr Phiri above, concerning the Chichewa term for swelling above. Dr Tembo first mentions the generalised Chichewa term, “chotupa” and then qualifies it by saying “what in modern times are called…”. These are immediately followed by, “ma fibroid” where the plural morpheme marker is in Chichewa and the lexical item “fibroid” is in English. He eventually says the lexical and grammatical morphemes in an English word “fibroids”. The patient’s response was in the affirmative. The situation above shows some hesitation in using the English term, which may have been used to mitigate the elitist view or power asymmetry associated with English as explained above. It may also be an acknowledgement of the fact that it is the only way to help the patient understand what the gynaecologist is implying. It must be stated also

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that Dr Tembo who solves the chotupa problem has more experience in practicing gynaecology in Malawi than the younger Dr. Phiri. Code mixing is switching from one language to another within the sentence boundary (Al-Khatib, 1995, p. 454; Saville-Troike, 2003, p. 50). Code mixing instances also occurred as in the extract from a simulated consultation where the gynaecologist responds to the question about whether it is possible to request an elective caesarean section. A borrowed lexical item may have triggered the use of English. ...Komano masiku ano commonly timawonano anthu oti sakufuna kuti mwana abadwe normal, they prefer Caesar. Uuh! you know, where resources allow, zimatheka. …but nowadays we commonly see people who do not want that the baby to be born through normal birth, they prefer Caesar. Uuh! you know, where resources allow, it is possible’.

The term “normal birth” refers to vaginal birth, is the first word that was stated in English. It is more precise than the Chichewa term “abadwe bwinobwino” which may literarily mean “proper birth” or “kubadwa kudzera munjira ya abambo” meaning “vaginal birth”, both of which may be unnecessarily graphic hence the term normal birth is preferred. English words following the term “caesar” in a new sentence, but the gynaecologist goes back to the normative, Chichewa at the end of his turn. The phrase nzotheka “it is possible” on its own, suffices as an answer to the question that the patient had initially asked. So, the doctor covers his use of English with a Chichewa phrase in the end, to still communicate in the same message although not with the same detailed information. It must also be noted that, the two interlocutors at the beginning of the consultation laugh about the simulated patient’s use of English instead of Chichewa. Thus, the gynaecologist knows the patient can understand English, but he might have gone back to Chichewa to fulfil the requirements of the simulated consultation.

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Discursive Functions of Code Switching According to Gumperz (1982b, p. 68), “… code switching is ultimately a matter of conversational interpretation, so that the relevant inferential processes are strongly affected by contextual and social presuppositions”. In other words, code switching, unlike borrowing, carries with it, inferential meaning which should be shared by the speech community. This is the basis that in discussing the switches, the author’s own interpretations are given, since she is a member of the society that was being studied and a bilingual speaker of Chichewa and English. According to Gumperz (1982b, p. 2) the discursive functions of code switching include: marking quotations, emphasis, realignment of speech roles, reiteration and elaboration. There were quotations used in this study, but English was used to reiterate a position taken by the doctor in Chichewa below: 1. Muli pa banja? Are you married? 2. Ayi. Divorced . No. Divorced.

In the extract above, the gynaecologist, in taking notes on the history of the patient, asks for the marital status in Chichewa. Her response in Chichewa is no, but she clarifies her “no”, with one English term, “divorced” instead of the Chichewa expressions of. banja linatha or ndinasuzulidwa or ndinawasuzula

The three Chichewa forms above either depict the lady as a victim or a victor since they would literary translate respectively as: ‘marriage ended’ or ‘I was divorced by him’ or ‘I divorced him’

These associated meanings carried by the Chichewa terminologies are not very relevant to the medical history required, hence the English term

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qualifies. Thus, the function of code switching exemplified above is reiteration. There are several reasons why the patient decided to switch to English, but those reasons are discussed beyond discursive functions.

Code Switching as Face Work According to Saville-Troike (2003, p. 212), “linguistic taboos are often related to language change” since the consistent use of a euphemistic term may lead to the loss of its dysphemic and orthophemistic expressions. Such may be the case with Chichewa orthophemistic expressions. The Oxford Chichewa-English, English-Chichewa Dictionary translates “menstruation” using its euphemistic expression only: kusamba “to bath”. Respondents in the current study, either used kusamba or period only. There was no dysphemic term for menstruation. Similarly, Kamwendo (2004, pp. 171–174) explains that when he interviewed participants in Mzuzu (North of Malawi) as to whether they are able to mention body parts in health communication settings they all said yes but could only give euphemistic expressions, a strategy he argued to be Face Work. This was also the case in this study and makes one sceptical of the existence of orthophemistic terms referring to menstruation in Chichewa. In trying to find the terms used to refer to female sexual organs in this study, both the doctors and the patients were asked to explain the pap-smear process. The gynaecologists used euphemistic expressions like njira ya abambo “a man’s passage” for vagina. The female participants could not name the parts specifically but referred to them vaguely like kumunsiku “down there”. Those that were probed further, would either indicate that they did not know the terminology which could have been dysphemic expressions, while one used generic ones like kuthako “the buttock area” for female genitalia. It can thus be argued that in the absence of orthophemistic expressions, the euphemistic expressions themselves are now becoming dysphemic, thus making it uncomfortable for some women to still talk about them. In other words, the Chichewa euphemistic expressions may not adequately maintain the face. Hence using another language whose

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x-phemism structure is different from the normative language allows them to talk about the same dysphemic items without the cultural burden of dysphemism. Thus, code switching may as well be x-phemism switching when it comes to taboo topics in the normative language in Chichewa. This is in-line with research that shows that code switching employs the distancing function which softens taboo embarrassment (see Al-Khatib, 1995, p. 446ff ). The following is an example of a gynaecologist using English to escape the embarrassment his statement may have caused on the patient: Kumbuyoko mukakhala ndi bambo mmapanga bleed ngati, mmataya magazi? (Previously when you would be together with your husband were you bleeding, was blood wasted?) ‘Have you ever bled while having sexual intercourse?’

The use of “bleed” is not only better in terms of what the gynaecologist wants to communicate, but it implies that the blood comes out on its own than the sexual act being the cause of it. It also reduces the embarrassment on the patient as it becomes a distancing term. The distancing function of code switching may also be explained using Gumperz (1982b, p. 237)’s, “we /they” distinction level. It can be applied here, as “we” (suggested by the use of Chichewa), believe that there is a linguistic taboo while “they” (implied in the use of English) do not believe so. Thus, the speaker takes on the “they” persona to detouch themselves from the “we” culture which would have otherwise constrained them from talking directly about a given expression. The following is an extract from a simulated consultation which exemplifies distancing function of language between Simulated Patient (P9) and a Gynaecologist (Dr Phiri) on having a Pap smear test. 1. P9: koma mwina I have been reluctant (laughs) kubwera kudzayezetsa chifukwa chaa(3s) like the process eti ‘Perhaps I have been reluctant (laughs) to come to have the test done because (3) like the process, right’ 2. Dr. Phiri: Mudandaula chani inuyo za process? ‘What concerns do you have with the process?’

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3. P9: Just that thought of kuvula, kuyesedwa (laughs). So I was like, is there no other better way or any other way of. ‘Just the thought of undressing, being examined (laughs). So I was like, is there no other better way or any other way of…’ 4. Dr. Phiri: kuyesela? ‘Doing the test?’

In turn 1 of the above extract, the patient may have used “the process” because it is brief, and it is a cover for what she is uncomfortable with but says it by implication in Turn 3. This is where she eventually says she would not like to undress and be examined, instead of being bold on record, and say I would not like kundiwonera, “to have someone see me naked” like she says in the interview with the female researcher. In the interview she explains why she will never go for pap smear as follows: …nde mwina nzachitika tsoka ndukapezako a dokotala a amuna. Nde basi azikandiwona ineyo maliseche anga? Ayi aaah …and I might even be unfortunate and find a male gynaecologist. And then he will have to see my genitalia. No way!

In the extract above, the female participant uses “maliseche” which is a preferred and formal x-phemism. This is known as an orthophemistic expression. This orthophemistic expression is general in that it does not mention specific parts of a female anatomy, thus, supporting the earlier assertion that Chichewa users, in this study, may not know orthophemistic expressions for sexual organs and their functions. Thus, English may be described using Gumperz (1982b, p. 65) that it is an alternative resource for bilinguals due to the communicative conventions it provides.

Summary and Conclusion In the gynaecological consultations in Blantyre Malawi, Chichewa as the default normative language brings forth some power symmetry, as it is inclusive, although some bilingual patients did not feel that way, believing they are not given a chance to choose. There are instances

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where the medical culture’s western tenets may affect communication. These however can be rectified by further probing. In addition, when Chichewa is the normative language, borrowing from, and code mixing and switching to English is a normal occurrence which aided communication. Borrowing from English was in most cases, inevitable as Chichewa lacks some of the medical terminologies that were required. This was acknowledged by the gynaecologists themselves directly or through the instant translation of their own Chichewa descriptions into English as a way of making their statements clearer. Furthermore, it has been shown that the discursive functions of code switching into English, reiteration and emphasis, correlate with the fact that Chichewa lacks clearer and shorter terms, as well as the precise medical terminology that English provides. In addition, patients may use English as a tool to escape the social-cultural burden of linguistic taboo and thus code switching whenever there is an anticipated linguistic taboo was a face-saving strategy. The inclusion of English in the simulated consultation came about even though the participants who are competent Chichewa speakers were briefed that they were required to use Chichewa. It can therefore be concluded that for bilingual speakers, communication in the medical consultation requires the use of both Chichewa and English as each language has its own function in ensuring that the goals of gynaecological consultations are met.

Implications The following are possible implications emanating from the discussion above. Firstly, gynaecologists’ deep understanding of ailments and conditions is useful when explaining un-named medical terms in Chichewa. It is the only way the doctor may achieve effective communication when faced with a monolingual Chichewa speaking patient. Secondly, gynaecologists need to take some switching into English by their patients as a sign that the patient is uncomfortable or embarrassed. Therefore, instead of asking the patients to be more specific, they have to devise ways of

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probing further without alienating. Lastly, in spite of the taboo restrictions, Chichewa is a useful language as far as understanding issues in gynaecological consultation are concerned hence gynaecologists need to enhance this skill by observing others and through formal peer training, from internship periods and throughout their practice as language is dynamic.

References Al-Khatib, M. A. (1995). A Sociolinguistic view of linguistic taboo in Jordanian Arabic. Journal of Multilingual and Multicultural Development, 16 (6), 443– 457. Allan, K., & Burridge, K. (2006). Forbidden words: Taboo and the censoring of language. Cambridge University Press. Combs Thorsen, V., Sundby, J., & Malata, A. (2012). Piecing together the maternal death Puzzle through narratives: The three delays model revisited. PLoS ONE, 7 (12). Combs Thorsen, V., Meguid, T., Sundby, J., & Malata, A. (2014). Components of maternal healthcare delivery system contributing to maternal deaths in Malawi: A descriptive cross-sectional study. African Journal of Reproductive Health, 18(1), 16–26. Cordella, M. (2004). The dynamic consultation: A discourse analytical study of doctor-patient communication. John Benjamins Publishing Company. Downing, L. J., & Mtenje, A. (2017). The phonology of Chichewa. Oxford University Press. Epner, D. E., & Baile, W. F. (2012). Patient-centered care: The key to cultural competence. Annals of Oncology, 23(Suppl. 3), 33–42. Foucault, M. 1973. The birth of a clinic. Tavistock Publications Limited. Goffman, E. (1967). On face-work: An analysis of ritual elements in social. Reflections, 4 (3), 7–13. Gumperz, J. J. (1982a). Studies in interactional sociolinguistics 2: Language and social identity. Cambirdge University Press. Gumperz, J. J. (1982b). Studies in interactional sociolinguistics 1: Discourse strategies. Cambirdge University Press.

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Gumperz, J. J. (2015). Interactional sociolinguistics: A personal perspective. In D. Tannen, H. E. Hamilton, & D. Schiffrin (Eds.), The handbook of discourse analysis (2nd ed., Vol. I, pp. 309–323). Wiley Blackwell. Jones, R. H. (2012). Discourse analysis: A resource book for students. Routledge. https://stellenbosch-my.sharepoint.com/personal/laurenm_sun_ac_za/Doc uments/Attachments/Jones2012DiscourseAnalysis(14).pdf [February 15, 2018]. Kamwendo, G. H. (2004). Language policy in health services : A sociolinguistic study of a Malawian referral hospital . Helsinki University Printing House. Kamwendo, G. H. (2008). Language proficiency testing and the expatriate medical practitioner in Malawi. Current Issues in Language Planning, 9 (3), 317–326. Lora-Kayambazinthu, E. (2003). Language rights and the role of minority languages in national development in Malawi. Current Issues in Language Planning, 4 (2), 146–160. Makwero, M. T. (2018). Delivery of primary health care in Malawi. African Journal of Primary Health Care and Family Medicine, 10 (1), 1–3. Mkandawire, E. (2012). Socialisation of Malawian women and the negotiation of safe sex. University of Pretoria. Mtenje, A. L. (2018). “Under the lion’s gaze”: Female sexualities under dictatorship in selected fiction from malawi. In C. Baker & H. Grayson (Eds.), Fictions of african dictatorship: Cultural representations of post colonial power (pp. 215–234). Peter Lang. Mullan, F., Frehywot, S., Omaswa, F., Buch, E., Chen, C., Greysen, S. R., Wassermann, T., Eldin, D., et al. (2011). Medical schools in sub-Saharan Africa. The Lancet, 377 (9771), 1113–1121. Munthali, K. (2017). Culture smart: Malawi. Kuperard. Muula, A. S., Nyasulu, Y., & Msiska, G. (2004). Gender distribution of students and staff at the University of Malawi College of Medicine, 1991–2003 [5]. South African Medical Journal, 94 (8 I), 636–637. Mwambene, L. (2005). Divorce in matrilineal Customary Law marriage in Malawi : A comparative analysis with the patrilineal Customary Law marriage in South. University of Western Cape. NSO. (2006). Demography from successive censuses. http://www.nsomalawi.mw/ index.php?option=com_content&view=article&id=70%3Ademographyfrom-successive-censuses&catid=2&Itemid=1 [October 3, 2019]. Roter, D. L., & Hall, J. A. (2006). Doctors talking with patients/patients talking with doctors: Improving communication in medical visits (2nd ed.). Praeger.

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Sangala, T. (2015, June 8). Flora suya set to star in monologues. The Times Group Malawi. http://times.mw/flora-suya-set-to-star-in-monologues/amp/ Saville-Troike, M. (2003). The ethnography of communication (3rd ed.). Blackwell. Seale, C., Butler, C. C., Hutchby, I., Kinnersley, P., & Rollnick, S. (2007). Negotiating frame ambiguity: A study of simulated encounters in medical education. Communication and Medicine, 4 (2), 177–187. Tamale, S. (2011). Researching and theorising sexuality in africa. In S. Tamale (Ed.), African sexualities: A reader (pp. 9–36). Pambazuka Press. World Health Organisation. (2014). Trends in maternal mortality: 1990 to 2013. Estimates by WHO, UNICEF, UNFPA, The World Bank and the United Nations Population Division. WHO Press.

10 Evil Spirits and Martyrdom as Perceptions of Pre-eclampsia Among Traditional Birth Attendants in Kano, North-West Nigeria Ruqayyah Yusuf Aliyu

Introduction Ujah et al. (2005) observed that of all the health statistics compiled by the World Health Organization (WHO), the largest discrepancy between developed and developing countries occurred in maternal mortality. The problem, according to WHO (2015), is characteristic of developing regions which account for approximately 99% (302,000) of the global maternal deaths in 2015, with sub-Saharan Africa alone accounting for roughly 66%. At the country level, Nigeria and India are estimated to account for over one third of all maternal deaths worldwide in 2015, with an approximate 58,000 maternal deaths (19%) and 45,000 maternal deaths (15%), respectively (see executive summary WHO, 2015). Maternal morbidity and mortality in Nigeria are still at alarming rates and therefore of major concern. Izugbara (2016, p. 3) observed that R. Y. Aliyu (B) Department of Information and Media Studies, Faculty of Communication, Bayero University, Kano, Nigeria © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_10

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the country’s estimated pregnancy related deaths place it among the top 10 most dangerous countries in the world for a woman to give birth. Nigeria’s maternal mortality ratio was 917 per 100,000 live births as at 2017, on a downward trend from 978 in 2010 and 931 in 2015 but remains high when compared with a world average of 211 in 2017 (WHO, 2019a). In 2015, a Nigerian woman has a 1 in 22 lifetime risk of dying during pregnancy, childbirth or postpartum/post-abortion; whereas in the most developed countries, the lifetime risk is 1 in 4900. Izugbara et al. (2016) put the figure for Nigeria at 1 in 13, compared to 1 in 31 for sub-Saharan Africa and only one obstetrician/gynaecologist for every 181,458 individuals. Between 2005 and 2015, the WHO estimated that over 600,000 maternal deaths and no less than 900,000 maternal near-miss cases occurred in the country (Souza, 2019; WHO, 2019b). These grim statistics indicate that reducing maternal mortality in Nigeria is a global priority. Ujah et al. (2005), in a study in North-Central Nigeria found that the major direct causes of maternal mortality were hemorrhage (34.6%), sepsis (28.6%), eclampsia (23.6%) and unsafe abortion (9.6%) while the most common indirect causes were hepatitis (18.6%), anesthetic complications (14.6%), anaemia in pregnancy (14.6%), meningitis (12%), HIV/AIDS-related deaths (10.6%) and acute renal failure (8%). The authors also found that 79% of the maternal deaths occurred within 24 hours of admission and most were preventable. Meh et al. (2019) observed variations in the levels of maternal mortality between Northern and Southern parts of Nigeria. Maternal mortality was more pronounced in the North and increased in 2013 compared to 2008 while it slightly decreased in the South. The authors also found that media exposure and education were associated with maternal mortality in the North while contraceptive method, residence type and wealth index were associated with maternal death in the South and in both regions, age and community wealth were significantly associated with maternal mortality. Hypertension related diseases account for a large percentage of maternal deaths, the world over. According to WHO (2011), hypertensive disorders in pregnancy are an important cause of severe morbidity, long-term disability and death among both mothers and their babies with pre-eclampsia and eclampsia standing out as major causes of

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maternal and perinatal mortality and morbidity. The majority of deaths due to pre-eclampsia and eclampsia are however avoidable through the provision of timely and effective care to the women presenting with these complications (see summary of recommendations, WHO, 2011). Pre-eclampsia is responsible for high rates of morbidity and mortality, particularly in sub-Saharan Africa and when undetected or poorly managed, it may progress to eclampsia which further worsens the prognosis (Akeju et al., 2016; Ujah et al., 2005). Pre-eclampsia often presents as new-onset hypertension and proteinuria during the third trimester and can progress rapidly to serious complications, including death of both mother and fetus (Rana et al., 2019). According to Macon (2018), common symptoms of pre-eclampsia include elevated blood pressure, swelling of the face or hands, headaches, excessive weight gain, nausea and vomiting, vision problems, including episodes with loss of vision or blurry vision, difficulty urinating, abdominal pain, especially in the right upper abdomen. Seizures, loss of consciousness and agitation are additional symptoms that show progression to eclampsia. Although the epidemiology of pre-eclampsia and eclampsia is still not ascertained, early detection through antenatal care and facility delivery have remained helpful in the management of the condition. Izugbara et al. (2016) noted that one of the key reproductive challenges facing women and girls in Nigeria is the use of traditional birth attendants. The authors noted that in 2013, traditional birth attendants were present in 22% of childbirths unchanged from the 2008 figure and a large proportion of births, 88 and 79% in the North-West and NorthEast regions respectively occur at home. Given the often low levels of education and importance of this group of care workers, their beliefs on pre-eclampsia and eclampsia, as health conditions, is a critical first step in the early detection and management of the disease. African traditional and religious beliefs persists in all aspects of life across the continent, particularly on issues about health and illness, and such explanations still exist for pre-eclampsia and eclampsia in some communities in Nigeria. The circulation of unscientific explanations among care workers is of particular concern due to the role they still play in deliveries outside the hospital setting across Nigeria (see Izugbara et al., 2016). This chapter, using Focus Group Discussions with

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traditional birth attendants, studies the beliefs and perceptions of risk of pre-eclampsia and eclampsia among traditional birth attendants in Kano metropolis. Kano is a mega city and a commercial hub located in the North-West Nigeria.

Objectives of Study The main objective of this study is to examine the beliefs and perceptions of risk from pre-eclampsia and eclampsia among traditional birth attendants in Kano, Northern Nigeria. The specific objectives are: 1. To ascertain the knowledge of and perception of risks associated with pre-eclampsia and eclampsia among the traditional birth attendants 2. To find out the beliefs associated with symptoms of pre-eclampsia and eclampsia among the traditional birth attendants

Literature Review Eclampsia and pre-eclampsia have remained major causes of maternal deaths across the world and scholarly efforts have been invested in researching issues relating to the disease condition. A study by Boene et al. (2016) on community perceptions of pre-eclampsia and eclampsia in southern Mozambique revealed that local beliefs in the region regarding the causes, presentation, outcomes, and treatment were not aligned with the biomedical perspective. The community was often unaware of the link between hypertension and seizures in pregnancy and numerous widespread myths and misconceptions may induce inappropriate treatment-seeking and demonstrate a need for increased community education regarding pregnancy and associated complications. A study in Sindh, Pakistan (Khowaja et al., 2016) found that pre-eclampsia in pregnancy was not recognized as a disease and there was no name in the local languages to describe it. Women however, knew about high blood pressure and were aware they can develop it during pregnancy. It

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was widely believed that stress and weakness caused high blood pressure in pregnancy and presents as headache. The perception of high blood pressure was not based on measurement but on symptoms and self-medication was often used for the headaches. They were also aware that severe high blood pressure could result in death. Savage and Hoho (2016) studied knowledge of pre-eclampsia among 200 women living in Makole Ward, Dodoma, and Tanzania. They found low knowledge of the disease condition. The study concludes that educational systems (formal and informal) are failing to provide communities with potentially lifesaving information and recommended health center, community, and school-based education programs for the community. A study on exploring survivor perceptions of pre-eclampsia and eclampsia in Nigeria using the health belief model (Sripad et al., 2019) found that many of the beliefs, attitudes, knowledge, and behaviors of women are consistent across the country, with some variation between the north and south. The study found that women’s perceived susceptibility and threat of health complications during pregnancy and childbirth, including pre-eclampsia and eclampsia, influence care-seeking behaviors. Moderating influences include acquisition of knowledge of causes and signs of pre-eclampsia, the quality of patient-provider antenatal care interactions, supportive discussions and care seeking-enabling decisions with families and communities. These cues to action mitigate perceived mobility, financial mistrust, and contextual barriers to seeking timely care and promote the benefits of maternal and newborn survival and greater confidence in and access to the health system. Akeju et al. (2016) conducted a study on community perceptions of pre-eclampsia and eclampsia in Ogun State, South West Nigeria and found that knowledge of pre-eclampsia and eclampsia are limited among communities in the state. Findings reveal that pre-eclampsia was perceived as a stress-induced condition, while eclampsia was perceived as a product of prolonged exposure to cold. Thus, heat-related local medicines and herbal concoctions were the treatment options. Akeju et al. argue that perceptions anchored on cultural values and lack of adequate and focused public health awareness were major constraints to knowledge of the aetiology and treatment of the conditions.

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In a study on the factors contributing to maternal mortality in NorthCentral Nigeria, Ujah et al. (2005) found that maternal mortality ratio in north-central Nigeria has remained high and the trend is rising. The main direct causes identified were hemorrhage, eclampsia, sepsis, and unsafe abortion, while the indirect causes include hepatitis and HIV/AIDS-related deaths. Also, maternal age, illiteracy, multiparous mothers, and non-utilization of antenatal services were risk factors for maternal mortality identified by the study. In a study of antenatal clients attending a specialist hospital in Kano, North-West Nigeria, Lawan et al. (2015) found that the majority perceived that eclampsia is preventable through good anti-natal clinic (76.4%) and hospital delivery (70.8%). Overall, 66.8% had good perception about eclampsia, about a third (39.6%) of the mothers were less prepared, up to 37.6% were not ready for complications, half (50.4%) knew at least three danger signs of pregnancy, and 30.0% donated blood or identified suitable blood donor. Despite the limitations of Traditional birth attendants, they remain popular in some rural communities. A survey on perceptions and utilization of traditional birth attendants by pregnant women attending primary health care clinics in a rural local government area in Ogun State, South West Nigeria (Ebuehi & Akintujoye, 2012) found that respondents’ had very positive attitude toward traditional birth attendants’ services in spite of the care workers’ limited knowledge of their roles in maternal health care, as evidenced by their call for more training to improve their knowledge and skills in maternal health care delivery. This confidence in the care givers is further corroborated by their relatively high use of these services. Their popularity in communities across the country makes studies of their beliefs and perceptions of risk from pre-eclampsia and eclampsia disease conditions increasingly important, especially in Northern Nigeria where the highest maternal mortality rate in the country is recorded. There is currently a paucity of research in this field and this study will attempt to fill that gap in literature.

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Theoretical Framework This study uses Health Belief Model (HBM) as its theoretical base because the theory argues that a person’s belief in a personal threat of an illness or disease together with the individuals belief in the effectiveness of the recommended health behavior or action will predict the likelihood the person will adopt the behavior. The HBM, according to LaMorte (2019), was developed in the early 1950s by social scientists at the United States Public Health Service in order to understand the failure of people to adopt disease prevention strategies or screening tests for the early detection of diseases. Later uses of HBM were for patients’ responses to symptoms and compliance with medical treatments. The HBM derives from psychological and behavioral theory with the foundation that the two components of health-related behavior are: 1. The desire to avoid illness, or conversely get well if already ill; 2. The belief that a specific health action will prevent, or cure, illness. Ultimately, an individual’s course of action often depends on the person’s perceptions of the benefits and barriers related to health behavior. There are six constructs of the HBM. The first four constructs were developed as the original tenets of the HBM. The last two were added as research about the HBM evolved as written by LaMorte (2019). 1. Perceived susceptibility—This refers to a person’s subjective perception of the risk of acquiring an illness or disease. 2. Perceived severity—This refers to a person’s feelings on the seriousness of contracting an illness or disease (or leaving the illness or disease untreated). There is wide variation in a person’s feelings of severity, and often a person considers the medical and social consequences. 3. Perceived benefits—This refers to a person’s perception of the effectiveness of various actions available to reduce the threat of illness or disease (or to cure illness or disease). 4. Perceived barriers—This refers to a person’s feelings on the obstacles to performing a recommended health action.

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5. Cue to action—This is the stimulus needed to trigger the decisionmaking process to accept a recommended health action. 6. Self-efficacy—This refers to the level of a person’s confidence in his or her ability to successfully perform a behavior. The HBM is considered suitable for this study because it focuses on beliefs held by traditional birth attendants who in this context are considered opinion leaders as far as pregnancy, delivery, and related issues are concerned within the communities they operate. It can be argued that because they command authority based on their expertise, a number of pregnant women rely on their health beliefs and to a large extent, this influences their health seeking behaviors.

Materials and Methods The study was carried out in Kano metropolis of Kano State. Kano State, in North-West Nigeria, is one of the oldest and largest states in the country, and perhaps also the most traditional according to Lawan et al. (2013). The metropolis is made of eight Local Government Areas (LGAs) consisting of Kano Municipal Council and Dala, Gwale, Fagge, Nassarawa, Tarauni, Kumbotso, and Ungoggo LGAs. It is a commercial and agricultural hub with both urban and rural settlements. The residents are predominantly Muslims, though there are significant groups of Christians and is densely populated and characterized by overcrowding, poor sanitation, and inconsistent municipal water supply (Lawan et al., 2013). This study seeks to provide a deeper understanding of the beliefs associated with pre-eclampsia and eclampsia among traditional birth attendants. The research, approached from interpretative view point, is qualitative and flexible (Creswell, 1994; Wimmer & Dominick, 2011) and researchers believe such methods can provide a deeper understanding of social phenomenon than would be obtained from purely qualitative data (Silverman, 2007). Data for the study was collected through Focus Groups Discussions (FGD) with Traditional Birth Attendants in Kano Metropolis who have never received any form of training on signs,

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symptoms, and risk factors in pregnancy. This was purposely to extract their long term held beliefs with regards to pre-eclampsia and eclampsia. Two FGDs of eight discussants each (a total of 16 discussants) were conducted. The FGD was conducted at the Islamic Center of Fagge Local Government Area Council and at a house in Panshekara area of Ungoggo Local Government a week apart in March, 2020. With the help of two research assistants, the sessions were recorded and notes were taken during the discussions. Data obtained was transcribed and translated from Hausa to English. Interpretative narration based on the sub-themes of the study (objectives) was used to analyze the data. Direct quotes from the FGDs used for emphasis were necessary.

Data Presentation and Analysis Knowledge and Perception of Risks of Pre-eclampsia and eclampsia among the TBAs The discussants demonstrated awareness of the possibility of a woman developing complications with headache and swollen feet, face and arms during pregnancy. They however consider it normal in pregnancy. They could not link the probable signs and symptoms of pre-eclampsia to any danger for the woman and the fetus. You don’t expect a woman to be pregnant and remain the same; it is normal to have sickness during the first trimester and towards delivery, she becomes uncomfortable, adds up in size and normally experience swollen feet and enlargement of all parts of her body. Even her nose and lips increase in size.

Another discussant noted these changes often disappear: You will also notice that once a woman gives birth, whatever changes on her body disappears. Therefore, changes in pregnancy are not unanticipated.

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It is also worth noting that each pregnancy is unique and therefore a woman cannot predict what changes could occur when pregnant, even if she had previous pregnancies.

Another discussant was of the opinion the changes are nothing to worry about. It is nothing to worry about when a woman experiences changes like swollen feet when pregnant, in fact, the whole of her body enlarges in preparation for child birth. A woman normally goes back to normal after delivery, especially when she observes the forty days hot birth period (wankan jego).

For one participant, the symptoms are natural unless the woman is seriously sick. Each and every pregnancy is unique in its own way and everyone knows that pregnancy is a process that brings about changes in a woman, therefore, just because a woman complains of headache, body pain or has swollen feet … we just pray she delivers safely. It is natural that a woman becomes very much uncomfortable especially towards end of the pregnancy. There is nothing much to worry about unless if a woman is seriously sick.

Beliefs Associated with Symptoms The discussants held that pregnancy is normally perceived as a divine and unique experience and that is why people often pray for safe delivery for pregnant women The truth is that whenever people see a pregnant woman, they offer this silent prayer for her to deliver safely even if she doesn’t show any sign of sickness. It is believed that delivery is a process that only divine intervention makes possible. Just imagine the whole process, the narrow passage and all of that, I think it is enough for everyone to understand that safe delivery is by God’s grace.

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It is also believed, among the discussants, that multiple pregnancy results in excessive swelling of the feet. One of the discussants said “excessive swollen feet is sometimes an indication that a woman is going to give birth to twins.” Others perceived the seizures and blurred vision during or after pregnancy as signs of being possessed by evil spirits or witchcraft. You know a pregnant woman’s body is raw and therefore prone to all sorts of attacks by evil spirits. That is why we insist that pregnant women always cover their hair, should not seat outside at midday and at sunset or in the night because these are the times the wicked creatures target the vulnerable. Same advice is also given to the women during the first forty days of delivery. We sometimes give to them annulets (Laya) to fix on their hair as prevention against evils spirits and witches.

On what remedy they offer when any of the symptoms are observed, they said they give herbs and holy water (rubutu) to the women and in some instances, prayers using the verses of the Holy Qur’an (Tofi ) by clergies. One of the discussants explained that. … especially for first timers, we educate them on the fact that their body is undergoing changes which may cause a lot of discomfort but it is bearable and a normal process every woman normally goes through. We also give them some herbs to drink like white Zobo and Ararrabi.

Another discussant attributed the dizziness to poor nutrition. She said: And you know when a woman doesn’t eat well when pregnant, it is likely that she will be dizzy from time to time and that is why we advise that our pregnant women to eat very well so as to conserve enough energy for delivery and for the fetus to develop well.

The discussants didn’t link high blood pressure to any state in pregnancy probably because it can only be detected through medical examination. They appear unaware of the linkages of the symptoms of pre-eclampsia and eclampsia to hypertension or as a danger sign in pregnancy.

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Knowledge, Risk Perception and Beliefs Although the participants are aware of the symptoms, they don’t link them with the scientific explanations or see the signs as life threatening and in the case of any mortality, it is accepted as destiny. On fear of maternal mortality a discussant notes, You know death is inevitable and each and every person will surely die of something; people die in their sleep and if a woman is destined to die while pregnant or during childbirth, even if she didn’t develop swollen feet, headache or any other sign, you are talking about, she will certainly die. And if that happens, (from perspective of Islam), she dies a martyr. We don’t pray for that but we know pregnancy comes differently with peculiarities. After all, we have been conducting successful deliveries for long and remember our parents and grandparents managed their deliveries without any hospital and they did very well. We learnt from them and have also been doing very well. I am sure you know that there is no cure for death.

Findings It is evident that the TBAs have prior beliefs associated with preeclampsia and eclampsia and do not perceive the signs and symptoms as dangerous and life threatening to pregnant women. This correlates with the findings of Khowaja (2016) in Sindh Pakistan which found that preeclampsia in pregnancy was not recognized as a disease and there was no name in the local languages to describe it. Instead of advising the pregnant women to seek medical care, the TBAs treat the conditions with herbs (White Zobo and Ararrabi) or rubutu. Rubutu is a spiritual medicine obtained by washing certain verses of the Holy Qur’an, written on a wooden board (Allo) with locally made ink called (tawada) into a container and offered as a cure drink. In cases of the advanced conditions (seizures and blurred vision for instance), it is believed that a woman is possessed by evil spirits or for witchcraftes. Findings of this study correlates with the finding of Boene et al. (2016) on community perceptions

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of pre-eclampsia and eclampsia in southern Mozambique which revealed that beliefs regarding the causes, presentation, outcomes, and treatment of pre-eclampsia and eclampsia were not aligned with the biomedical perspective. The community was often unaware of the link between hypertension and seizures in pregnancy. The implication of the findings is that because the signs of preeclampsia and eclampsia are not perceived as danger signs by an influential group managing pregnancies in the communities, this will remain a barrier to health seeking behaviors of pregnant women in such communities and therefore, pre-eclampsia and eclampsia may remain a factor to maternal mortality even though it is avoidable if they seek medical care at the appropriate time.

Conclusion Pre-eclampsia and eclampsia may remain major sources of maternal death if the perception and beliefs of the traditional birth attendants, who are very popular, trusted, and widely used in the rural communities by pregnant women are not changed. They don’t perceive a woman with signs and symptoms of pre-eclampsia and eclampsia as being at any risk. Also, because they are opinion leaders in the communities they serve, their strongly held beliefs is often transferred from generation to generation and will therefore remain a challenge as far as maternal health and morbidity is concerned.

Recommendations Based on the findings of this study, the following recommendations are made: 1. Government, donor agencies, non-governmental organizations, and all other stakeholders should target and train TBAs on signs and symptoms of pre-eclampsia and eclampsia with a view of changing

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their age long beliefs on the conditions as well as other danger signs in pregnancy. 2. Media campaigns and other strategies on behavior change should be intensified with a view of improving maternal health and curbing maternal mortality 3. Antenatal care and skilled delivery should be made accessible, affordable, and compulsory for all pregnant women at all levels of the society.

References Akeju, D. O., Vidler, M., Oladapo, O. T., Sawchuck, D., Qureshi, R., von Dadelszen, P., ... & CLIP Nigeria Feasibility Working Group. (2016). Community perceptions of pre-eclampsia and eclampsia in Ogun State, Nigeria: A qualitative study. Reproductive health, 13(1), 57. Boene, H., Vidler, M., Sacoor, C., Nhama, A., Nhacolo, A., Bique, C., ... & Menéndez, C. (2016). Community perceptions of pre-eclampsia and eclampsia in southern Mozambique. Reproductive health, 13(1), 33. Creswell, J. W. (1994). Research design: Qualitative and quantitative approach. Publications. Ebuehi, O. M., & Akintujoye, I. A. (2012). Perception and utilization of traditional birth attendants by pregnant women attending primary health care clinics in a rural local government area in Ogun State, Nigeria. International Journal of Women’s Health, 4, 25. Izugbara, C. O., Wekesah, F. M., & Adedini, S. A. (2016). Maternal health in Nigeria: A situation update. African Population and Health Research Center. Khowaja, A. R., Qureshi, R. N., Sheikh, S., Zaidi, S., Salam, R., Sawchuck, D., ... & Bhutta, Z. (2016). Community’s perceptions of pre-eclampsia and eclampsia in Sindh Pakistan: A qualitative study. Reproductive Health, 13(1), 36. LaMorte, W. W. (2019). The theory of planned behavior. http://sphweb.bumc. bu.edu/otlt/MPH-Modules/SB/BehavioralChangeTheories/BehavioralCh angeTheories3.html. Accessed 3 June 2020. Lawan, U. M., Abubakar, I. S., Jibo, A. M., & Rufai, A. (2013). Pattern, awareness and perceptions of health hazards associated with self medication

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among adult residents of Kano metropolis, Northwestern Nigeria. Indian Journal of Community Medicine: Official Publication of Indian Association of Preventive & Social Medicine, 38(3), 144. Lawan, U. M., Takai, I. U., & Ishaq, H. (2015). Perceptions about eclampsia, birth preparedness, and complications readiness among antenatal clients attending a specialist hospital in Kano, Nigeria. Journal of Tropical Medicine. Macon, B. L. (2018). Eclampsia: Symptoms, causes, risk factors, diagnosis, treatment and outlook. https://www.healthline.com/health/eclampsia. Assessed 3 April 2020. Meh, C., Thind, A., Ryan, B., & Terry, A. (2019). Levels and determinants of maternal mortality in northern and southern Nigeria. BMC Pregnancy and Childbirth, 19 (1), 417. Rana, S., Lemoine, E., Granger, J. P., & Karumanchi, S. A. (2019). Preeclampsia: Pathophysiology, challenges, and perspectives. Circulation Research, 124 (7), 1094–1112. Savage, A. R., & Hoho, L. (2016). Knowledge of pre-eclampsia in women living in Makole Ward, Dodoma, Tanzania. African Health Sciences, 16 (2), 412–419. Silverman, D. (2007). Doing qualitative research. Sage. Souza, J. P. (2019). The Nigeria near-miss and maternal death survey: Collaborative research generating information for action. BJOG: An International Journal of Obstetrics & Gynaecology, 126, 5–6. Sripad, P., Kirk, K., Adoyi, G., Dempsey, A., Ishaku, S., & Warren, C. E. (2019). Exploring survivor perceptions of pre-eclampsia and eclampsia in Nigeria through the health belief model. BMC Pregnancy and Childbirth, 19 (1), 431. Ujah, I. A. O., Aisien, O. A., Mutihir, J. T., Vanderjagt, D. J., Glew, R. H., & Uguru, V. (2005). Factors contributing to maternal mortality in northcentral Nigeria: A seventeen-year review. African Journal of Reproductive Health, 9 (3), 27–40. WHO. (2011). WHO recommendations for Prevention and treatment of preeclampsia and eclampsia. https://www.who.int/reproductivehealth/public ations/maternal_perinatal_health/9789241548335/en/. Assessed 23 March 2020. WHO. (2015). Trends in maternal mortality: Estimates by WHO, UNICEF, United Nations population division, World Bank group and the United Nations on trends in maternal mortality 1990–2015. WHO Document Production Services: Geneva. https://www.who.int/reproductivehealth/publicati ons/monitoring/maternal-mortality-2015/en/. Assessed 23 March 2020.

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WHO. (2019a). Maternal mortality ratio (modeled estimate, per 100,000 live births). Nigeria. https://data.worldbank.org/indicator/SH.STA.MMRT?loc ations=NG. Assessed 32 March 2020. WHO. (2019b). Maternal health in Nigeria: Generating information for action. https://www.who.int/countries/en/. Assessed 31 March 2020. Wimmer, R. D., & Dominick, J. R. (2011). Mass media research: An introduction. Wadsworth.

Part VI Mental Health

11 Culture and Mental Healthcare Access in the Moroccan Context Sophia El Ouazzani, Inmaculada Zanga-Martin, and Rochelle Burgess

Introduction Mental health (MH) care is often the most neglected health sector across countries. Depressive and anxiety disorders present with a higher burden of disease for both men and women worldwide (Rehm & Shield, 2019). However, MH systems’ organization seem to be overwhelmed particularly due to a scarcity of resources and low-quality of services (Kilbourne et al., 2018; Rehm & Shield, 2019). In low- and middle income countries (LMICs), scarcity of MHcare resources causes immense treatment gaps, hampering accessibility to care for the population. As a result, the global implementation of evidence-based MH service models is S. E. Ouazzani (B) Division of Psychiatry, University College London, London, UK e-mail: [email protected] I. Zanga-Martin · R. Burgess Escola Universitaria d’Infermeria i Terapia Occupational (EUiT), Terrassa, Spain © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_11

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encouraged as a strategy. However, does reaching universality in mental healthcare access demand a uniformity in models of care? Would a global systemic homogeneity truly contribute to universal mental health access? Healthcare systems attach importance to cultural factors but considers them secondary for service delivery. A theoretical reflection on cultural diversity is necessary for a praxis based on equality (Zango-Martin et al., 2015). In this chapter we will discuss how social dynamics in the Moroccan society, including norms, religious and health-related beliefs, and attitudes, may influence MHcare access. This may inform the scale up of MH services and reduce health inequities for vulnerable groups in the country.

The Moroccan Mental Healthcare System: Inequities and Treatment Gap Morocco, the last constitutional monarchy in North Africa, is a lowmiddle income country hosting 36 million inhabitants. The country has experienced socio-political reforms in recent decades which contributed to universal access to basic services and human development in the country. For instance, with the launch of the National Initiative for Human Development (INDH) in 2005 by the King, national actions were taken to reduce poverty and vulnerability across the population. Reforms to the 2011 Constitution and the 2007 RAMED, national health insurance for vulnerable groups, are great examples of the country’s motivation to tackle social injustices. Yet, significant inequalities persist across the population, with women, children, and people with disabilities more likely to experience lower quality and poor access to education, employment, and healthcare (Ministère de la Solidarité, De la Femme, 2014). In fact, people with MH disabilities or problems face higher risks of such social injustices, with access to services identified as the biggest challenge for this group (Trani et al., 2015). The Moroccan MHcare system, characterized by its lack of resources, unequal distribution of care between sectors and limited quality of treatments, presents with discontinuity of services outside large medical institutions (Aroui et al., 2017; Landrault et al., 2020). Morocco could,

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therefore, benefit from community-based MH services to sustainably bridge the treatment gap in LMICs as they support community involvement and the development of key partnerships with local stakeholders. Models such as primary healthcare, tasks shifting, assertive community treatments are some examples of the community-based interventions which contribute to increasing access to MH promotion, medicines, and professionals in LMICs (Asher et al., 2017; Burgess & Mathias, 2017; Dalgleish et al., 2012). Yet, would a simple and uniform implementation of those intervention models contribute to increasing MHcare access for the population and reduce the social inequalities for this target group? Recent implementation studies on health care services in Arab countries suggests that cultural acceptability is critical, but many questions remain as to what is meant by this broad term, and its specific implications for mental health in these countries (Al-Krenawi et al., 2001, 2009; Gearing et al., 2013).

Cultural Acceptability of Healthcare: Theoretical Notions The Arabsphere, which covers territories stretching from the Middle East to Northern Africa, and the African Horn, represents Arab-speaking countries sharing similar cultural foundations. However, to adopt a uniform conception of the Arab and Muslim culture would be flawed. For instance, the Maghreb region, located in North Africa, is characterized by cultural diversity and plurality of ethnicities, a result of its history and multiple migratory movements. Hence, the country has clear cultural distinctions which must be explored as they will likely directly shape behaviors and beliefs pertaining to MH. In sociology, understood as a complex ensemble of shared beliefs and behaviors among a particular social, ethnic, or age group, culture heavily contributes, through norms, social and religious beliefs, to how people understand and experience MH problems and perceive their needs (Eapen & Ghubash, 2005; Karam et al., 2007; Shalhoub-Kevorkian, 2005). Culturally blind MH practice models were identified as the main barrier to service access across Arab countries in the Middle East

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(Gearing et al., 2013). To our knowledge, no similar data were obtained from any Maghrebi countries. In fact, the Moroccan culture and its influence on MH service access has not been studied to this day. Cultural acceptability, a recurrent dimension of access, is understood as the degree of fit between a healthcare system, its services and delivery processes, and people’s expectations, beliefs, and perceptions about health. These are in fact, strongly influenced by social and cultural factors and will shape help-seeking behaviors, therapeutic alliances, and service use opportunities and freedoms (Thiede et al., 2007; Levesque et al., 2013). At the political level, a thorough comprehension of how culture may influence access to care can contribute in reducing inequities and support universal access through ‘equity-oriented policy agendas’ (Thiede et al., 2007). Given the MH treatment gap and social inequities in the Moroccan MHcare system, we explore the relationship between Moroccan key sociocultural factors and MHcare access. We will use a case study to support our arguments.

Cultural Influences on MHcare Access: Faith, Autonomy, and Gender Religion, Tradition, Health Beliefs and Accessibility to Mental Healthcare in Morocco In his book, ‘Rethinking Psychiatry,’ Arthur Kleinman argues that healing, especially in the realm of the psyche, is enacted through the symbols of the surrounding culture. In this sense, according to Stein (2000), the psychiatrist and the shaman alike heal by manipulating the symbolic framework that they share with their respective patients. Stein indicated that the Moroccan perception of mental problems is informed by two monolithic symbolic frameworks, the secular and the sacred. To understand how the MHcare system is organized in Morocco, it is necessary to understand the legacies of Western psychiatry, which arrived in 1912 following the French Protectorate and the advent of tropical medicine in the country. Multiple euro-centric models of asylums were founded in Casablanca during this time. Current psychiatric practices

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in Morocco are still strongly rooted in Western medicine which views mental health problems as a medical condition amenable to medical intervention. These measures are being implemented where traditional customs and beliefs are the majority (Stein, 2000; Trenberth, 2017). Yet, even though traditional practices are mainstreamed, especially in rural population, they remain absent in the MHcare system. Indeed, Moroccans seek services from both the medical MHcare system and traditional approaches, such as faith healers and marabouts, complementarily (Kadri et al., 2004). Interestingly, a growing interest in traditional therapies is seen in MH rehabilitation for bridging the gap in MH treatments in Morocco (Kadri et al., 2010; Russinova & Blanch, 2007). However, according to Abdelkhalek & Ejjanoui (2012), the field of psychiatry in the country has kept its distance from traditional modes of healing despite dominant service use in both rural and urban areas. Box 1 : Religious and supernatural beliefs: The shutdown of Bouya Omar in 2015 Appealing to the once-animist Berbers, the Moroccan indigenous population, and relating to mystical power, the concept of sorcery, sHour (seHour), is a popular explanation given to mental health problems, especially in rural regions. People who walk over, touch or swallow sHour are not themselves; they suffer from a range of chronic physical and mental disturbances. Symptoms such as hallucinations and bizarre behaviours would be explained as a clear case of accidental ingestion of sHour. Such beliefs are supported by a Fqih, a traditional, or religious, healer frequently consulted by Moroccans. Indeed, Islamic beliefs also colour the Moroccan views of MH problems. Demons, djnoun, referenced in holy writings, are often identified as the cause of psychological symptoms. A complex set of rituals, including prayers, animal sacrifice and long-term social exclusion in sacred locations are interventions used for ‘delivering from demons’ any person suffering from behavioral disturbances. Local shrines, with Marabouts imbued with baraka, are the location where such practices are taking place, away from the population. Loosely translated as “divine blessing”, Baraka is sought by the ‘ill-ones’,

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explaining their exile to these shrines. The fqih, also holding the baraka and considered a religious scholar and traditional healer, practices religious treatments by reading the Koran and performing b’khour. The fqih tools include b’khour, herbal remedies and amulets, as well as Koranic readings and magical incantations. Bouya Omar, is a sadly controversial example of a shrine in Morocco where people with MH problems were hidden and faced important violence and neglect. In 2015, the shrine was famously shut down by local authorities when violations to human rights were publicly denounced (Khammali, 2015). The closure of this shrine marks a political turnover for mental health policies in Morocco and the exposure of Human rights violation at national and international levels for people with MH problems. Public discussions on Moroccan beliefs and superstitions and their intersection with human rights were initiated, thus exposing the social injustices faced by this vulnerable group. After the shutdown of Bouya Omar, people pointed to the need for culturally sensitive interventions, addressing such issues in the country (Khammali, 2015).

Currently, many Moroccans are faced with the challenge of finding a middle ground between two powerful symbolic frameworks around MH: the secular and the sacred one. However, according to Russinova and Blanch (2007), the application of spiritual approaches to the treatment of persons diagnosed with serious mental illnesses remains in its early stages. Alongside psychopharmacology, innovative vocational and psychosocial rehabilitation programs and the consumer/survivor movement, recognition of the spiritual dimensions of treatment can help to strengthen our understanding of recovery as the overarching MH and rehabilitation treatment goal (Russinova & Blanch, 2007). Nevertheless, this issue is much more complex in a context like Morocco where there are still challenges around the healthcare education, mental health, and the differences between rural and urban areas in relation to MHcare accessibility. Partnerships with spiritual leaders and traditional healers may be an effective strategy for MHcare access, especially in rural regions where considerable barriers may prevent service use (Asher et al., 2015).

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Mental Healthcare Decision-Making: Autonomy The degree of freedom, or opportunities, to make informed decisions in terms of care is often seen as a core tenet in healthcare access (Thiede et al., 2007). In fact, in Western healthcare philosophy, the principle of autonomy is a pillar of the ethical decision-making process for practitioners and patients (Elliott, 2001). Personal autonomy in healthcare access is represented through someone’s ability to seek, choose, and use quality services (Levesque et al., 2013). For example, the Convention on the Rights of People with Disabilities (CRPD) defines decisional autonomy as fundamental for making informed choices, free of external influences. However, we suggest that this position poses a potential conflict with collectivistic values across the Moroccan culture. In Morocco, as with other Arab societies, kinship and group-centrism heavily influence the understanding and practice of autonomy in mental healthcare decision-making. Hence, the individualistic perspective of autonomy, highly advocated in western medicine and professional norms, becomes culturally unacceptable in a Maghreban context (Elliott, 2001).

Group and Family-Centrism, and Autonomy “Al Ummah wahida’ , directly translated as one single nation, is often used to describe the entire Muslim and Arabic communities, stressing the central belief in kinship and collectivity across the Arab World. Families and communities are conceptualized as systems in which the relational dynamics between each member contribute to self-determination and conformism (Weatherhead & Daiches, 2015). In other words, your identity, social role, and related responsibilities, normally gendered, are defined by the position you hold and the relationship you have within the family unit or the community (Weatherhead & Daiches, 2015). All in all, these roles and responsibilities contribute to the good functioning of the family, which is considered beyond the nuclear levels. When someone is considered vulnerable, due to illnesses or disabilities,

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it is a norm to take care of that person so that the entire family’s wellbeing is maintained thus providing strong social support to MH service users. Taking an active role in choosing quality services for the person with psychosocial disabilities is a normal contribution for Moroccan family members (Dhami & Sheikh, 2000; Elliott, 2001; Weatherhead & Daiches, 2015). As a result, relatives’ educational levels, health beliefs, communication methods, caregiving, and help-seeking patterns will influence users’ decisions for MHcare service use (Weatherhead & Daiches, 2015). As the process is done collectively and dependent on multiple external factors, the power and freedom in mental healthcare choice-making are, thus, shared between family members. This transforms the definition of decisional autonomy in a Moroccan context, and may conflict with care systems and professionals who adopt a more medical and individualistic approach (Youssef & Deane, 2006). Given family members’ interdependence and kinship and the related impact on access to services, individual autonomy becomes culturally unacceptable for Moroccan service users. It is a growing consensus that users’ and family members’ participation in care planning are successful ingredients for more accessible and acceptable services as their lived experiences can contribute in strengthening the system (Lempp et al., 2018).

Paternalism, Power Dynamics, and Autonomy: Patient-Provider Relationship Moroccan society is marked by hierarchical power relations in the healthcare delivery paradigm, reflecting paternalistic relationships (El Rhermoul et al., 2018). Paternalism is defined as an attitude in a hierarchical relationship which involves a breach in an individual’s autonomy justified by beneficent or protective intent (Thompson, 2013). In Morocco, the patient-provider relationship is, indeed, characterized by a differential power dynamic shaped by differing beliefs between the patient and MH professional. Health providers tend to bear more of a ‘paternal figure’ in which patients are seeking instructions and recommendations rather than collaboration and consultation (El Rhermoul et al., 2018). In such

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patient-provider alliance, patients may end up being more compliant to the providers’ decisions and not engaging in decision-making (Kronfol, 2012b). Providers, on the other hand, may carry discriminating beliefs of mental incapacity or un-engaging behaviors, especially toward MH patients, thus not willingly sharing decision-making with them (Kronfol, 2012b). These beliefs may contribute in deepening the inherent stigma present in the MHcare system, and decrease patients’ motivation for seeking and using MHcare services (Kronfol, 2012b; Mestdagh & Hansen, 2014). Although this dynamic in the therapeutic alliance remains culturally acceptable in the Moroccan context, it may reduce the freedom for patient to access MH services. Acceptability is indeed nested in the patient-provider relationship as the professionals’ norms and values will contribute in shaping the interaction with the patients’ own set of values and beliefs (Thiede et al., 2007; Levesque et al., 2013). Yet, the local paternalism displayed through professionals’ norms are unacceptable to patients’ crucial rights to autonomy in decision-making. Awarenessraising campaigns informing healthcare professionals of the structural discriminations and stigma and their impacts on patients’ decisional autonomy should be implemented (Mestdagh & Hansen, 2014).

Intersectionality, Stigma, and Autonomy In Morocco, the health beliefs, knowledge or education levels will contribute to the common distrust in patients’ competency for decisionmaking for both practitioners and local community members, including families (Kadri et al., 2004). One should consider the intersection between collectivism and kinship and the MH stigma as a contributing factor to decisional autonomy in the Moroccan mental healthcare system. As mentioned, interpersonal relations are deterministic and drive human behaviors and choices via the influence of common expectations, attitudes, and beliefs (Shah et al., 2019; Youssef & Deane, 2006). Stereotypes and prejudice are, indeed, collectively built, often leading to discrimination and public stigma (Ciftci et al., 2013). For instance, considered unsuited for marriage or to nurture children, Moroccan

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women with MH problems may often experience delays or rejection for attaining social milestones such as marriage or childbirth. Internalizing the fear of abandonment, the social mistrust and shaming from their family, husband or potential prospects, and entire community, women avoid seeking the help they need. The internalization of common opinions and beliefs, including those within families, may lower the self-esteem, increase feelings of shame, the concealing of mental health needs and ultimately delay MHcare access, impeding recovery outcomes (Bonney & Stickley, 2008; Ciftci et al., 2013; Kadri et al., 2004; Thirthalli & Kumar, 2012). Family and individual’s reputation and honor are crucial in traditional Arab culture. Consequently, family shaming may be an additional considerable burden of MH problems, causing considerable tension and stress over the family unit (Kadri et al., 2004). This may further feed in the self and public stigma demotivating mental help-seeking behaviors.

Women’s Social Position and Autonomy Women with disabilities present with high vulnerability across Arab countries as they are frequently exposed to societal inequities reducing social opportunities such as MHcare access (El Rhermoul et al., 2018; Hamdan, 2009; Trani et al., 2015). In Morocco, women’s social position is a direct result of the intersection between modernism and traditionalism (Douki et al., 2007; Gardou & Checknoune-Amarouche, 2010). In rural areas, where reliance on traditional mentalities and interpretations of Sharia Laws is common, the consistency in gender-based discriminations is nurtured, thus deepening the burden of disease for women with MH disabilities (Hallward & Stewart, 2018). The social inequities even deepen the vicious circle of poverty for this specific group (Hallward & Stewart, 2018; Kadri et al., 2010). Higher rates of illiteracy, unemployment, and lower educational attainment can only support dependency at relational and financial levels. However, in Morocco, despite the established cultural conservatism, in rural areas, the emergence of modernism may nuance MHcare access particularly in urban regions. Moroccan women’s social position culminate in creating

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differential power dynamics between men and women, reducing their decisional autonomy (Ganle, 2015; Kronfol, 2012a; Modibbo et al., 2016; Trani et al., 2015). In attempting to universalize MHcare access throughout the Maghreb’s regions, considering the effects of dominant patriarchy and ensuing paternalism to which women are exposed becomes crucial as it guides social norms and etiquettes and allow for reaching out to the most vulnerable (Dhami & Sheikh, 2000).

Case Study As discussed, a MHcare system is made culturally acceptable when its features are adjusted to sociocultural dimensions of a given context. These will mold beliefs, attitudes, values, and norms present in the provider-patient interactions, and, hence, influence the ability to navigate the system and seek quality services by people with MH problems. Here, we will target key sociocultural factors in the Maghreban Culture and discuss their incidence on MHcare access using a case study analysis. First encountered at Ar-Razi Psychiatric Hospital in Salé, Morocco, this patient, Ms F (see Box 2) was a service user in the all-female unit. Using quotes from interviewed MH professionals working at this largest Psychiatric Hospital in the country, we analyze cultural impacts on MHcare access.

Case Study: Ms. F Using faith-based services as the first attempt to address her symptoms is a perfect display of health beliefs’ influence on Ms. F’s service uptake. Indeed, first encouraged by her family to seek the support from a Fqih, Ms. F holds the shared belief in strong religious devotion and deep connections with God as a mean for well-being and healing. Box 2: Case-Study

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Ms. F is a 26 years old woman living in rural Temara with her aging parents. She holds an A-levels degree, working as a self-employed seamstress, yet at the time, Ms. F was unemployed. She is unmarried and from a low socio-economic background. Six months prior to hospitalization, Ms. F started to display high irritability, insomnia, and delusions. Encouraged by her family, Ms. F first sought services from a Fqih who practiced Roquia rituals and Quran’s readings from Chorfas which community members recognized as blessed by Allah, as these religious practices are normally used for symptoms relief. Her condition, however, worsened over time. Ms. F, indeed, experienced severe depressed mood, suicidal ideation, and attempt. Ms. F sustained an ankle fracture after jumping off a window, for which she underwent surgery with postoperative infection. This medical incident resulted in mobility limitations for which she uses a wheelchair. After this episode, Ms. F was accompanied by her family to the hospital and admitted to Ar-Razi’s all-female unit for a major depressive disorder with suicidal ideation. Her symptoms included lack of insight, poor judgement, low motivation characterized by non-adherence to treatment, reduced attention, and impaired social skills. Symptoms management and stabilization was achieved via antidepressants and close behavioral monitoring on the ward. Ms. F was, then, referred for further therapeutic group activities all aiming for social skills training within the Hospital facility. She was, indeed, included in an all-women embroidery group which she particularly enjoyed as it as it was meaningful and gave her daily purpose whilst socializing with the other women on the ward.

This is a commonality for Muslim populations across the Arab-World (Chaar et al., 2018; Hamdan, 2009; Padela et al., 2012; Weatherhead & Daiches, 2015). Interventions which support spirituality and faith are a much effective approach for understanding patients’ beliefs while supporting their MHcare access in a culturally acceptable way in Morocco (Paul Victor & Treschuk, 2020). Although more frequently used along with medical services, spiritual leaders are easily available to the general public, thus, enforcing the use of traditional and religious leaders as first care providers in MHcare pathway (Al-Krenawi, 2005; El Rhermoul et al., 2018; Griffith et al., 2016; Kadri et al., 2004). As a

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matter of fact, in LMICs, partnerships between the institutionalize MH sector and the more ‘informal’ faith- and community-based systems are regularly identified as culturally sensitive strategies to address the treatment gap in these contexts (Burns & Tomita, 2015; Gearing et al., 2013; Griffith et al., 2016). This is particularly true in traditional societies, however yet to be in place in Morocco. A health worker said. […] Parents bring their children to a Fqih or ‘marabout’ who prevent a total medical care […] they do ‘lehjabat’ (superstitious practices), providing access to traditional and religious practices, but they delay early care especially for those in ‘Jbel.’ (mountainous regions) —Mr. N, Social Worker at Ar-Razi Hospital, Salé

Despite being culturally acceptable and more accessible, especially for the rural population, spiritual healers may delay or hamper MH recovery, especially at the community level in LMICs (Burns & Tomita, 2015). As exemplified in Ms. F’s case, seeking for faith-based services contributed in increasing the delays in presentation for care. This, in turn, has the potential to hamper the opportunities for MH recovery and increase psychosocial disability (Farooq et al., 2009). Ms. F’s case is another example for which a partnership between spiritual healers and mental health providers could support MHcare access and reduce treatments’ delays. Furthermore, the social position and identity of Ms. F contribute in shaping her needs for MH services. As an unemployed and unmarried 26-year old woman and main carer for her family, her inner motivation to use services may be shackled by self-stigma. The social norms and expectations which she bears conflict with the public stigma associated with MH problems further reducing her motivation to seek services. A health worker observed: […] Women, Given Their Role; They Take Care of Children and the Housework, They Are, Primarily, Wives and Mothers, May Feel Deeper Stress Compared to Men in Morocco. —Ms. K, Administrative Nurse at Ar-Razi Hospital, Salé

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These societal factors may contribute to Moroccan women, like Ms. F, denying their needs, disengaging with therapeutic treatments and ultimately hampering MH service access (Amri & Bemak, 2012; El Rhermoul et al., 2018; Youssef & Deane, 2006). Given the higher rates of MH problems among women compared to men in Arab countries, interventions targeting their MH education, gender-based stigma and employability at community levels may address the social determinants preventing universal access. A health care worker observed: First of all, we do not mix the two genders […] As a Mental Health professional, I am allowed to provide the care to a man or a woman…we do not have such issues here […] However, the social contacts between male and female patients are restricted, even in social and leisure activities we tend to limit the interactions. —Ms. S., Nurse at Ar-Razi Hospital, Salé

Modesty, being an important Moroccan and Islamic value, is maintained and promoted by segregating genders and limiting the social contacts even within the MH institution. The gender demarcation typically displayed in societal relationships can, indeed, be present even at service delivery levels as seen here with the all-female groups organized within the hospital. Gender differentiation, defined as the social classification process, between men and women, ascribed by biological differences between sexes, characterize relational customs in the Maghrebi culture. This gender-based norm feeds the hierarchical power dynamics between men and women (Salime, 2018). It is important, however, to reiterate that with emerging political and social modernism, especially in Morocco’s urban regions, there has been a slight tempering with gender demarcation. However, segregation in service delivery remains crucial for preserving values such as modesty. Finally, Ms. F’s case offers a perfect example of the interdependence and contribution of family members in MHcare access pathway. This is not uncommon in collectivistic Morocco where interdependence on family and social support may sometimes come at the detriment of decisional autonomy and empowerment for the patient. Indeed, they may

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sometimes be considered too impulsive or vulnerable to make a sound decisions for their MH. Family is very present; we live in a collectivity […] In the large family, everyone is interested in the well-being of the patient. This has a positive aspect as the individual will not feel lonely, however, when everyone gets involved, there is no more neutrality and everyone wants to heavily get involved in everything…and, sometimes the person is not autonomous anymore and rely on others for decision-making...there is no accountability expectations on the patient. —Ms. F., Psychiatrist at Ar-Razi Hospital, Salé

Although there is no information on the discharge pathway and continuity of services for Ms. F, one can assume that rehabilitation and community reintegration lean greatly on her family members especially given the local MH system limitations, and mostly the cultural importance of familial interdependence and caring. However, to provide culturally acceptable MH services in this context, one must be aware of the potential adversity that their engagement and beliefs may have on the patient’s autonomy, help-seeking behaviors, and empowerment, and risking to raise the burden of care for vulnerable families (Al-Krenawi, 2005; Gearing et al., 2013; Hamdan, 2009; Hanlon, 2017).

Conclusion The analysis of the case study described above contextualized sociocultural determinants which, if not addressed or considered in service delivery, may alter help-seeking behaviors and service use in Morocco. Community-based interventions are developed for tackling the treatment gap in low resources settings, often combining facility-based and community-based services in the organization of MH systems (Asher et al., 2017; Chatterjee et al., 2014). Supporting community-based implementation of MH programs through research and action plans, large World Health Organization and Global Mental Health initiatives tend to adopt a uniform conception of communities, neglecting locals

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realities and their impact on health access (Burgess & Mathias, n.d.; Patel & Prince, 2010). In an attempt to close the gap in MHcare access in Morocco, we need to make space for culture and gender-based norms in interventions so that services are more culturally acceptable. Program should build upon community mental health competencies, fostering resources so that local communities engage in key action plans (Burgess & Mathias, 2017). For instance, the use of ‘cultural brokers’ and ‘community workers’ could effectively inform MH practitioners on sociocultural determinants of health and support service acceptability (Javanparast et al., 2018). The contribution of Family Navigation Specialists could also build on local Moroccan families’ solidarity and implications already in place (Myers et al., 2015). Key partnerships can facilitate access to diversified resources, material or symbolic, and raise awareness on power relations contributing in service use. The support of spiritual leaders is more and more recommended in MH service development in traditional societies as Morocco (Russinova & Blanch, 2007). A relational model of autonomy may also contribute in addressing the power relations that influence mental health in the Moroccan society by granting an active role to key community members in decision-making without neglecting the adverse effect of MH-related attitudes and beliefs, or the participation of more vulnerable family members.

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12 Social Media Effects on Mental Behaviour: A Study of “Selfitis” Among Undergraduates of a Nigerian University Ngene Andrew Hyacinth

Introduction The medicalisation of problematic behaviours has gained attention among scholars, especially psychologists, in recent times due to revolutionary advancements in digital technology and their widespread adoption by society. It is increasingly difficult to determine whether new media technologies such as mobile phones are boon or bane. Mobile phones have become an indispensable tool in the hands of the young generation (Khanal et al., 2019; Subrahmanyam et al., 2016; Suhag et al., 2016). Griffiths (1995) published the first paper on technological addictions and since then, there has been a marked increase in research among scholars into internet addiction, online videogame addiction, mobile phone addiction, social media addiction, etc. These have occasioned other new technology-related mental health disorders such as “nomophobia” or no mobile phone phobia (King et al., 2010), “technoference” or N. A. Hyacinth (B) University of Nigeria, Nsukka, Nigeria © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_12

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constant intrusions of technology into everyday life (McDaniel, 2015) and “cyberchondria”, feeling ill after searching online for the symptoms of illnesses (Lewis, 2006). Selfitis, no doubt, appears to be another candidate to add to this growing list, despite the dearth of research on its phenomenology or its sub-components. The present study examines the concept of selfitis, its level of awareness, perception and factors responsible for excessive selfie taking among undergraduates.

Historical Antecedent of Selfitis Selfies are popular, not just among youths of the present generation, but have been in practice since the first picture was taken. Sakthivel and Thangamuthu (2019) argue that the invention is actually very old as Robert Cornelius, in 1839, was tipped to be the first man to take the first “selfie”, although not with the name “selfie”. He called it the “first light picture ever taken” and is regarded as one of the first human portraits ever. According to the Merriam- Webster dictionary (2016), selfie is “an image of oneself, taken by oneself using a digital camera especially for posting on social networks”. Similarly, Oxford English Dictionary (2013) describes selfie as a “photograph that one has taken of oneself, typically one taken with a smart phone or webcam and shared via social media”. The word “selfie”, would later be declared as the word of the year on the basis of a statistical analysis of the Oxford English Corpus in 2013. According to Khanal et al., (2019), the term “selfie” first appeared in paper or electronic medium on 13th of September, 2002 inan Australian internet forum by an Australian (Nathan Hope). Towards the end of 2012, the Time Magazine considered selfie as one of the “top 10 buzzwords” of that year. Again, based on the 2013 survey, commissioned by Smartphone and camera maker Samsung, it was found that selfies make up to 30% of the photos taken by people aged 18–24 years (Saroshe et al., 2016). The popularity of selfie photographs has assumed an exceptional societal dimension, as millions of selfies are becoming a new medium for self-representation through various social media platforms in order

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to keep self in other people’s minds (Winter, 2018 in Khanal et al., 2019). To this end, scholars such as (Khanal et al., 2019; Murray, 2018; Sakthivel & Thangamuthu, 2019) argued that this phenomenon has taken a psychological dimension. According to Buffardi and Campbell (2008) in Khanal et al., (2019), selfie taking has been identified to be a self-oriented action that allows users to establish their individuality and self-importance; it is also associated with personality traits such as narcissism. This is what Murray (2018) refers to as “the selfie contagion”. Hempel (2014) corroborates this when he alluded to the publication of Forbes Magazine on the 22nd of August, 2014 entitled “CONTAGION – How the ‘Selfie’ became a social epidemic”. Hempel described selfie as “a type of social scourge that has spread problematically through Western culture”. Following this, on 31st March, 2014, a news story appeared in the Adobo Chronicles website that the American Psychiatric Association (APA) had classed “selfitis” (i.e., the obsessive taking of selfies) as a new mental disorder (Vincent, 2014). Although, Hempel viewed selfie as a scourge that has only infiltrated the Western culture, it has diffused to Asia, Africa and other continents.

Scholarly Views on Selfitis as a Mental Disorder There have been divergent views among scholars on whether excessive selfie taking should be classified as a mental disorder. According to the first school of thought, branding selfie taking as a mental disorder is a subtle way of misleading or deceiving people by medicalising it with the disorder name known as “selfitis”. A major proponent of this view is Griffiths and Balakrishnan (2018) who in their study entitled, “The psychosocial impact of excessive selfie taking in youth: A brief overview”, argued that the claims of the American Psychiatric Association (APA) concerning selfie taking is a hoax. The second school of thought contradicts the stance of the former as they believe that excessive selfie taking could result into some psychological problems on the part of the selfie-taker who has crossed from

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the borderline and acute stages to the chronic stage. Proponents of this school of thought include Bhattacharyya (2017), Gupta and Pooja (2016), Kaur and Vig (2016), and Singh and Tripathi (2017). Sakthivel and Thangamuthu (2019) argue that there is a strong connection between narcissistic traits and excessive selfie taking among college students in their study. However, some academics have claimed that while it is true that the evidence for “selfie addiction” being a social problem is lacking, it does not mean that it could not be a “primary pathology” in time to come (Senft & Baym, 2015). The problem is, that there has been very few empirical studies that have examined “selfie addiction”, and those that have been published suffer from many methodological weaknesses or majorly assessed the subject from a qualitative point of view (Griffiths & Balakrishnan, 2018; Balakrishnan & Griffiths, 2017). According to Statista.com (2020), India has the highest number of Facebook users in the world. India also accounts for more selfie deaths (76) in the world compared to any other country from a total of 127 worldwide (Lamba et al., 2016). Nigeria is the 19th on the hierarchy of Facebook users in the world with an estimated 24 million users, aside other social networking sites such as Instagram, Telegram, Twitter, Whatsapp etc. It is thus imperative to ascertain the awareness and perception levels of excessive selfie taking as a mental disorder and the factors responsible for it in Nigeria.

Empirical Studies Gaddala et al. (2017) examined the association between Internet addictions and “selfie addiction” among 402 Indian medical students comprised of 262 females and 140 males and found that a significant association exists between selfie dependence and internet dependence among users. Shah’s (2015) operationalisation of “selfie addiction” scale was adopted (the taking of three or more selfies a day) and the result reveals that most of the participants would have been genuinely addicted to taking selfies. Singh and Tripathi (2017) carried out a small study comprising 50 Indian adolescents aged 12–18 years (28 females; average

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age 14.6 years) and found that narcissism and hyperactivity were positively correlated with “selfie addiction”, whereas self-image was negatively correlated with “selfie addiction”. But, in addition to the very small sample size, the instrument used to assess selfie tendencies had little to do with addiction and simply asked questions about typical selfie behaviour (e.g., how many selfies a day/week are taken, how much time a day is spent taking selfies, are the selfies posted onto social media, etc.). Also, a study by Kela et al. (2017) examined the more medical effects of excessive selfie taking. In a survey of 250 Indian students aged 18–25 years (56% females), it was reported that 30% reported lower backache; 15% suffered from stress; 20% suffered from cervical spondylitis; 25% reported headache and 10% suffered from “selfie elbow” (a tendonitis condition). However, the unclear thing from the methodology described in the study is to what extent these effects can be specifically attributed to selfie taking. Balakrishnan and Griffiths (2017) carried out a study to establish whether “selfitis” (obsessive selfie taking) actually exists. They explored the concept of selfitis across two studies and collected data on the existence of selfitis with respect to three levels (borderline, acute, and chronic). The authors developed a new scale to assess sub-components of selfitis first by using focus group discussions with 225 teenagers and testing on a further 400 participants (also teenagers and young adults). The scale comprised questions relating to the six main motivations for taking selfies, which were identified in the research using focus groups. Their findings revealed that those with chronic selfitis were more likely to be motivated to take selfies due to attention seeking, environmental enhancement, and social competition suggesting that those with chronic levels of selfitis are seeking to “fit in” with those around them, and may display symptoms similar to other potentially addictive behaviours. The existence of the condition appears to have been confirmed, findings do not however indicate that selfitis is a mental disorder; only that selfitis appears to be a condition that requires further research to assess fully the psychosocial impacts that the behaviour might have on the individual who indulges in it. Sung et al. (2016) in a study entitled “Why we post selfies: Understanding motivations for posting pictures of oneself ”, conducted 148

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in-depth interviews out of their 319 sample size to generate qualitative data for their work with selfie-posters. Participants were asked what motivates them to post selfies on social media. The researchers identified 66 motivations which were also analysed for face validity and overlap, and ultimately reduced to 19 items comprising a scale of “motivations for posting selfies on social networking sites”. Using principal component analysis (PCA) with varimax rotation, the 19 items were found to load onto four factors or primary motivations, which are attention seeking, communication, archiving, and entertainment. The authors of the study also wanted to see whether these motivations for posting selfies actually predicted selfie-posting intention and frequency. They found out that attention seeking, communication, and archiving all significantly predicted the intention to post selfies on social media, but that none of the motivations predicted actual selfie-posting frequency. Only narcissism was found to significantly predict the frequency of selfie posting.

Theoretical Application This work is situated within Uses and Gratification Theory. Uses and Gratification Theory: Proposed by Blumer and Katz (1974) in Weiss (1976), the theory emphasises motives and the self-perceived needs of media consumers. Uses and gratification theory has four major assumptions: (i) media use is goal-directed or motivated, (ii) people use media to satisfy their needs and desires, (iii) social and psychological factors mediate media use, and (iv) media use and interpersonal communication are related (Rubin, 1993 in Kircaburun et al., 2018). According to Severin and Tankard (1997) in Asemah (2011, p.170), the theory “emphasises audiences’ choice by assessing their reasons for using a certain media to the disregard of others, as well as the various gratifications obtained from the media, based on individual, social and psychological requirements”. Wimmer and Dominick (2000) argue that the uses and gratification theory examines what people use media for and the satisfaction they derive from their media behaviours. For example, Facebook can be used to satisfy the need to belong and for self-presentation

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(Nadkarni & Hofmann, 2012); Instagram can be used for self-expression and social interaction (Lee et al., 2015), surveillance/knowledge about others, documentation, coolness, and creativity (Sheldon & Bryant, 2016); and Snapchat can be used for communication with the immediate environment (Piwek & Joinson, 2016). Other researchers suggested the needs the media tend to satisfy. McQuail et al. (1972) identified personality relationship needs, personality identity/individual psychology needs and surveillance needs while, Katz et al. (1973) identified cognitive needs, affective needs, personal integration needs, social integrative needs and tension release needs. Kircaburun et al (2018, p.1) observed that “users’ preferences of social media use differ according to their individual differences and use motives, and that these factors can lead to problematic social media use (PSMU)”. Excessive or abusive use of social media platforms based on their perceived motives and preferences might thus degenerate into certain unhealthy behaviours, affirming the aptness of this theory.

Data Gathering and Methods 383 questionnaires were distributed to students of a public university in Nigeria. They were handed out in the university to those who were willing to fill the questionnaire. 381 copies of the questionnaire were returned and analysed after the field study (see Table 12.1 for distribution). Three medical practitioners in Nigeria we interviewed as part of the study for experts’ view on “Selfitis” as a mental disorder. The highest population group was age 21–25 (48.0%), while the lowest was 31 years and above (5.8%). Males constituted 37.8% of the respondents, while 62.2% were females. There were also more respondents in 200 level (52.8%) than others with the lowest from 400 level (12.3%).

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Distribution of respondents by Demographic Characteristics (N =

Age

Frequency

Percentage

16–20 years 21–25 years 26–30 years 31 years and above Total Gender Male Female Total Academic level 100 level 200 level 300 level 400 level Total

124 183 52 22 381

32.5 48.0 13.6 5.8 100

144 237 381

37.8 62.2 100

56 201 77 47 381

14.7 52.8 20.2 12.3 100

Source Field Survey, 2020

Findings Table 12.2 shows that (6.6%) of the respondents agree or strongly agreed that they have heard about selfitis as a mental disorder while that the majority of the respondents (69.3%) disagreed. It is remarkable however that while, just 1.6% of the respondents agree or strongly agree that they are aware that excessive selfie taking could lead mental health disorder problems, more than 70% agree or strongly agree they are aware social media could have psychological effects on the users. On the perception of Selfitis, majority of the respondents agrees taking selfies gives them a good feeling (89.7%), create healthy competition among colleagues (69%), gain enormous attention (62.2%), get more likes and comments on social media (70.6%) and makes them feel more confident (64.3%). Perception of increase in social status is, however, less wide spread at 51.7% and popularity at 43%. A good majority (67.2) also agree they use photo editing tools to enhance selfie looks on social media. The findings also showed that majority of the respondents (63.5%) agreed that taking selfies provides better memories about the occasion

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Table 12.2 Distribution of responses on awareness, perception and factors responsible for excessive selfie taking Distribution on Awareness of Selfitis

Strongly agree

Agree

1. I have heard about Selfitis as a mental 0.80% 5.80% disorder 2. I’m aware that excessive selfie taking 0.80% 0.80% could lead to mental health problem 3. I’m aware social media could have 22.30% 49.10% some psychological effects on the users Distribution on perception of Selfitis 4. Taking selfies gives me a good feeling 40.40% 49.30% to better enjoy my environment 5. Sharing my selfies creates healthy 17.80% 51.20% competition with my friends and colleagues 20.70% 41.50% 6. I gain enormous attention by sharing my selfies on social media 7. Taking selfie makes me feel more 16.00% 48.30% confident 8. Taking different selfie poses helps 12.60% 39.10% increase my social status 9. I feel more popular when I post my 1.80% 41.20% selfies on social media 10. I post frequent selfies to get more 21.50% 49.10% “likes” and comments on social media 11. I use photo editing tools to enhance 20.50% 46.70% my selfie to look better than others Distribution on factors responsible for obsessive Selfie Taking 12. Taking selfies provides better 25.20% 63.50% memories about the occasion and the experience 13. By posting selfies, I expect my friends 30.40% 18.90% to appraise me 14. When I don’t take selfies, I feel 8.70% 17.10% detached from my peer group 8.90% 58.00% 15. I gain more acceptances among my peer group when I take selfie and share it on social Media 16. I am able to reduce my stress level by 37.30% 38.30% taking selfies Source Field Survey, 2020

% agree 6.60% 1.60% 71.40%

89.70% 69.00%

62.20% 64.30% 51.70% 43.00% 70.60%

67.20%

88.70%

49.30% 25.80% 66.90%

75.60%

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Cross tabulation of some of the variables in table 2 along gender

Variable

Disagree (%)

Agree (%)

Total (%)

18.10 41.80

81.90 58.20

100.00 100.00

8.30 52.30

91.70 47.70

100.00 100.00

88.90 65.40

11.10 34.60

100.00 100.00

26.40 23.20

73.60 76.80

100.00 100.00

43.10 27.00

56.90 73.00

100.00 100.00

Edit my photos male female Feel more confident male female Feel detached male female Reduce stress male female Gain acceptance male female Source Field Survey, 2020

and the experience for them but just below half (49.3%) agree that by posting selfies they expect their friends to appraise them. 66.9% agree that they gain more acceptances when they share selfie on social media and 75.6% agree they reduce stress by taking selfies. Very few, (25.8%) however don’t feel detached from their peers when they don’t take selfies. Table 12.3 shows that more men edit (81.9%) than women; more men feel more confident (91.7%); more of both don’t feel detached, but among those who do there are more women; higher percentages of both use social media to reduce stress and more women (73%) use it to gain acceptance.

Reactions from Some Medical Practitioners on Selfitis The perceptions of the medical experts differ on the excessive use of the social media among the undergraduate students and the associated mental disorders.

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My take on it (selfitis) is true, because I have a patient,… and every time I go to Facebook I see she keeps posting more and more selfie of her saying things like, “isn’t life good”, “isn’t life fantastic”. Then, I have another friend that is going through a terrible divorce who constantly posts pictures of herself, that is a sign she has emotional problem or something distressing her that she is growing overboard with selfies. I strongly believe that anything that is done in excess becomes an obsession. So, definitely, it is a mental problem. Another interviewee supports the mental disorder categorisation noting however that many sufferers do not perceive as such, probably because its effect is not physical. Excessive selfie taking he argues, is an attempt to validate one’s perception of his or her looks irrespective of what people think about it. “I am beautiful, why are people not seeing it”. So, they have to take as many pictures to drive home their points, he said. The word excessive, another interviewee however argues, in this context is unscientific and very subjective as only the use of proven criteria can objectify the degree of any trait, and permits the use of “excessive” scientifically. On the factors responsible for excessive selfie taking, an interviewee argues that excessive selfie taking most times, is a result of low self-esteem as takers want acceptance from others and are not sure of themselves. “They want people to accept them, so they do these things to see how many likes and how many comments they get” he said. Another interviewee was of the opinion some take it to get self-praise. Another interviewee however disagrees it’s about low self-esteem arguing that it’s a good evidence for “self-love”, self-confidence as per looks. “Persons who indulge should be assessed for behaviours that portray confidence…. I do not believe they have low self-worth…. It is in my opinion the opposite”, he said.

Discussion Findings from this study revealed that majority of the participants are not aware of the concept of “Selfitis” let alone of its awareness as a mental disorder. However, there was a general consensus among the majority,

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that excessive selfie taking could result into a psychological problem. This implies that participants are aware of the psychological implication of excessive selfie taking on their mental health, perhaps due to narcissistic behaviours associated with the addictive use of social media platforms but do not have any consciousness of “Selfitis” as a mental disorder occasioned by excessive selfie taking. This corroborates the data from the in-depth interview where a medical practitioner opined that “sufferers do not perceive it (excessive selfie taking as selfitis) as such, probably because, its effect is not physical”. On the other hand, the majority of the participants in the study revealed that taking of selfies gives them a good feeling to better enjoy their environment, help create a healthy competition with their friends and colleagues, and help them gain enormous attention by sharing their selfies on social media among others. This finding is consistent with the assertions of McQuail et al., (1972) and Katz et al., (1973) on the uses and gratification theory and the needs it tends to satisfy among the users of social media platforms. According to McQuail et al., and Katz et al., people’s use of certain media of communication depend on their perception and the satisfaction they intend to get from such media. One significant thing about the perception of the undergraduates on excessive selfie taking, is that it makes them feel more confident and helps them to get more “likes” and comments. This is further explained by the submissions of the interviewees in the study who attributed this to low self-esteem as captured in these words, “They want acceptance from others because they are not sure of themselves”. “Some take it to get self-praise. This usually makes them feel good about themselves or feel bad if no one comments”. However, one of the interviewees was of a contrary view that “Excessive selfie taking is a good evidence for ‘self-love’ and ‘self-confidence’ and not of low self-worth”. Thus, the implication of this finding is that the majority of the undergraduates take selfies in order to boost their self-esteem, gain attention and acceptance from their friends and colleagues, and to garner more “likes” and comments on their posts on social media. Sung et al., (2016) support the foregoing as attention seeking, communication and archiving significantly predicted the intention to post selfies on social

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media. However, they were not determinants to the frequency of selfie posting on social media, but were linked to narcissistic tendencies. Furthermore, since the undergraduates do not perceive excessive selfie taking as a mental health problem. Similarly, the majority of participants in the study opined that taking selfies provides them with better memories about the occasion; they gain more acceptances among their peers when they take selfie and share it on social media, and that they are able to reduce their stress level by taking selfies. These could be identified as some of the factors behind excessive selfie taking among the undergraduates. Balakrishnan and Griffiths (2017) corroborate this finding when they noted that those with chronic levels of selfitis are seeking to “fit in” with those around them, and may display symptoms similar to other potentially addictive behaviours. However, in this study participants said that when they do not take selfie, they do not feel detached from their peers.

Conclusion Following the official declaration of obsessive selfie taking as a mental disorder known as “Selfitis” by the American Psychiatric Association (APA) in 2014, some scholars have argued that to attribute selfie taking to a mental disorder is inappropriate, especially when it has not crossed the borderline. Although, some studies have been carried out on this phenomenon among university students, yet awareness seems to have remained at its lowest ebb. This study, therefore, investigated the awareness level of selfitis, perception of selfitis as a mental disorder, and factors responsible for obsessive selfie taking among undergraduates of a university in Nigeria. Findings show that awareness and perception of selfitis as a mental disorder caused by excessive selfie taking was poor among the study participants. Also, factors such as gaining social acceptance among once peers, and the building of self-esteem were identified as some of the reasons why the students engage in excessive selfie taking. What these imply is that many of the students who engage in this act (excessive selfie taking) could be suffering from selfitis and other narcissistic behaviours without their knowledge. Therefore, the need for massive enlightenment

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programmes aimed at educating the students on the consequences of the practice.

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Part VII Communities, Western and Indigenous Communication

13 Collective Change Through Mass Media: Engaging Adolescent Girls Through Interactive Radio to Promote AIDS-Free Communities in Kenya Deborah Sambu, Claudia Abreu Lopes, and Victor Apollo

Introduction It has been largely assumed that to influence how people behave, it was necessary and sufficient to change their personal attitudes and beliefs (Fishbein & Ajzen, 1975). In this tradition, the role of the media would be to disseminate information that educates people through increasing knowledge and understanding of a topic. For example, telling people what to do during a disease outbreak would be enough for people to change their behaviour in desired ways. This approach implies D. Sambu Jacaranda Health, Nairobi, Kenya C. A. Lopes (B) International Institute for Global Health, United Nations University, Kuala Lumpur, Malaysia e-mail: [email protected] V. Apollo United Nations Development Programme, Nairobi, Kenya © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_13

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that people trust the source of information and they have the ability and motivation to process the information weighing pros and cons of changing their behaviour (Eagly & Chaiken, 1993). Critically, there is no evidence that collective change can be achieved only by presenting people new information. It is nowadays accepted that many programs (e.g., media programs and training courses) that educate people about specific attitudes or behaviours through information campaigns are ineffective (Abrahamse et al., 2005). Targeting individuals with new information—expecting them to change their attitudes and behaviour and potentially influencing others—is a strategy that does not work. When designing media interventions, other aspects related to the cultural, social and political context context need to be taken into account, such as existing traditions, policies, social norms and collective beliefs. Additionally, creating opportunities and contexts conducive to change (Michie, 2011), requires lifting financial and other barriers, providing skills training and boosting the motivation of individuals to change through social or material rewards (Mook, 1995; Coleman, 2010). This chapter discusses the theoretical underpinnings of social change through mass media, presenting a case study of a media intervention to prevent HIV/AIDS transmission among adolescent girls in Kenya. By doing so, we hope to contribute to strengthening the evidence-base for practitioners of what works, how and why in using media for social change.

Changing Individuals Through Persuasion The field of communications for development has been dominated by persuasion theories that use communication to induce positive and negative feelings that stimulate action (Cialdini, 2007). Traditionally, persuasion theories focussed on the characteristics of messages, sources and recipients to influence individuals. Persuasion theories consider two alternative yet complementary routes for persuasion: the central and the peripheral (Petty & Cacioppo, 1986; Eagly & Chaiken, 1993). In

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the central route, the content of a message is key. Individuals elaborate the information through high-resourced cognitive processes, where the information is understood and linked to previous knowledge. In the peripheral route, individuals change their attitudes and opinions based on cognitive heuristics such as the credibility or familiarity of the message source and the number of times the message is heard (Chaiken et al., 1996). Individuals need motivation, ability and opportunity to change (Michie, 2011). Motivation implies that the behaviour or ideas are important for individuals and the effort involved in change is perceived as worthy. Change is triggered by the recognition that the actual behaviour does not lead to desired outcomes, such as improved health or well-being, or material or social gains such as being praised or accepted (Lewin, 1942). New ideas and behaviours also need to be consistent with societal and ethical values endorsed by individuals. Ability refers to individuals’ proficiencies to adopt the promoted behaviour. Ability factors include knowledge, social support, perceived behavioural control, and a sense of self-efficacy (Schwarzer, 1992). For example, individuals may lack ability to change behaviour if the behaviour is biologically or psychologically regulated (e.g., for substance addictions, fear-induced behaviour), if the behaviour is directly controlled by others (e.g., using rewards and punishments), or if there are material barriers to prevent it (e.g., the resources not available). Individuals have expectations that the new behaviour will lead to desired outcomes. Individuals also need to perceive that they have freedom to choose how to behave and what to think. When individuals perceive that their freedom to think or act is restricted, they will react in the opposite way. This effect is known as reactance which contributes to crystallise opinions, making them more resistant to change in the future (Brehm, 1966; Steindl, 2015). Reactance can be triggered by assertive tactics when manipulation is perceived, when individuals recognise the interest of other individuals or groups, or when messages have an imperative tone. Challenging individual beliefs and ways of thinking can lead to belief perseverance (Smith, 1997) despite new information having a negative boomerang effect when people not only will not change, but they will

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even fortify their existing opinions or behaviour (Levy and Maaravi‚ 1998). Although the ideas of information processing and reactance explain the conditions and mechanism of individual change, they do not explain how changing attitudes lead to behavioural change and how people change their attitudes or behaviours in groups. The contexts in which this information is received play a crucial role. Social and cultural realities frame people’s experiences and their ideas of risk, well-being, and illness. These ideas are consistent with customs and habits that are deeply entrenched in collective narratives and identities. These realities are defined by what people value, what they believe, how others behave, with whom they identify, their perceived status within groups they belong to, the perceived costs of defying others’ expectations and their resistance in behaving in new ways. Campaigns to change behaviours and attitudes should speak to these realities to be effective.

Changing Social Norms Through Media Campaigns An approach that has become popular among development practitioners is the Social and Behaviour Change Communication (SBCC). A broadly accepted definition of SBCC is ‘the use of communication to change behaviours, including service utilisation by positively influencing knowledge, attitudes and social norms’ (Johns Hopkins, 2017). Social and behavioural change occurs when new practices or ideas, aligned with societal values, become widespread within or across social groups. Social change should be positive in a way that promotes safer and healthier communities, enabling individuals to make their own decisions to live fulfilling lives and contributing to more free and equal societies. More than just an advertisement or a website, SBCC coordinates messaging across a variety of communication channels to reach multiple levels of society (Johns Hopkins, 2017). For example, through television dramas whose characters are faced with difficult health choices, radio call-in shows where audiences can call and share their experiences with others, through community conversations about the importance of

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HIV testing or through mobile apps designed to help community health workers to discuss health issues with their communities. Media has an important role to play in terms of contributing to shift the social norms and reinforce existing identities. Social Norms (Cialdini, 1991) are expected rules of behaviour that coordinate our interaction with others by determining what constitutes acceptable behaviour in a given situation (Cialdini, 1991). Media channels that target large groups and provide a space for discussion are the most effective to change social norms. Social norms can be (a) descriptive—people behave in a certain ways because it is how others with whom they identify behave, (b) injunctive—people behave in certain ways because they perceive it as being approved of by others important in their life. This distinction corresponds to empirical expectations and normative expectations, respectively (Bicchieri, 2016). Social norms hold more power to influence individual behaviour when these two beliefs converge. A collective shift in social norms is not the result of changing the behaviour of all individuals from the bottom-up. Several studies and meta studies (e.g., Tankard and Paluck (2016)) suggest that we can promote social change by manipulating the perception of social norms. In parallel, social change through the perception of norms can be accelerated by leveraging social networks and social incentives (e.g. acceptance, status, recognition, social capital). Using media for social and behaviour change requires a broad understanding of the historical and cultural milieu of communities. For example, how society is structured; the tensions between social/religious groups; who is allowed to challenge the status quo; the narrative that ties individuals (e.g., historical, religious); the positive aspects of social identity and its threats; the shared beliefs that sustain the social norms. Collective change can be achieved when the media strategy involves different social layers—individuals, social groups, communities and societies at large. Targeting individual-level behaviour change is based on the false premises that all individuals (a) are capable of controlling their environment, (b) have equal power in a situation and (c) make their own decisions (Rogers & Singhal, 2003).

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The Social-Ecological Model (Bronfenbrenner, 1977) is a framework that helps to explain the interactions between individuals and their environment, suggesting that for interventions to be effective, it is necessary to act simultaneously across multiple levels of determinants. It considers the interplay between individuals, community, and societal factors to explain social change. It also includes the structural environment, for example, poverty, existent policies, actual and perceived access to and quality of health services. Contextual-sensitive media campaigns consider these aspects that must be examined and addressed, ensuring that the desired change does not disrupt the social equilibrium of communities.

Collective Change Through Media Interventions Groups in society adopt and form common-sense theories about their social and physical worlds. For example, stereotypes about other groups, beliefs about causes and treatment of diseases, or expectations about the roles of mothers and fathers in their children’s upbringing. Often these collective beliefs are acquired through interactions with others, through communication, or learned implicitly by social norms and rituals that can both persist and evolve across generations. Individuals identify with others based on shared ideas and values that constitute their common vision of reality. Social identity (Tajfel & Turner, 1979) develops from the sense of belonging derived from perceived group membership. The emotional and cognitive significance of the social identity involves not only conforming to the beliefs, attitudes, and behaviours of group members, but enhancing the status of the in-group relative to out-group to protect a positive self-esteem (Tajfel & Turner, 1979; Hogg et al., 2004). The Theory of Social Representations (Gaskell & Bauer, 1999; Howarth, 2016; Wagner & Hayes, 2005) alludes to ideas shared by members of a community that contribute to their social identification. The theory distinguishes between core and peripheral ideas, depending on their importance for defining a social representation (Abric, 2001; Breakwell, 1993; Duveen and Lloyd, 1990). Change implies abandoning some peripheral ideas, while keeping core ones, as individuals offer more

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resistance to accept entirely new ideas (Sherif & Hovland, 1961). It is possible to change peripheral ideas without changing the core idea of a representation, which would conflict with shared identities. The core also provides a standard against which any peripheral changes can be evaluated and a resource for guiding approaches to modifying peripheral elements. Changing core ideas or behaviours may undermine the sense of belonging to groups and provoke inconsistencies with other shared beliefs. Media should therefore be aimed at identifying and changing the peripheral beliefs that sustain certain behaviours keeping the boundaries of the groups and avoiding conflicting ideas. Shared social representations lie at the basis of beliefs, norms and practices, as people use them to make sense of the world by filtering information and interpreting situations (World Bank, 2015). Accordingly, behaviours and social norms can be changed by changing social representations that sustain them by exposing groups to alternative yet acceptable ways of thinking and to new role models — in real life, in fiction, and through public deliberation. New ideas have a latitude of acceptance and a latitude of rejection (Hovland & Sherif, M. 1980; Schwartz, 2000). New ideas that lie within the latitude of acceptance can be incorporated and individuals change in that direction. But when individuals are exposed to new ideas that lie within the latitude of rejection, there is not only resistance to change, but individuals can change in the opposite direction, and the initial ideas become more polarised (Palluck, 2009). Social change progresses as people perceive others with whom they identify to change in the same direction. (Arias, 2019). Change is accomplished if individuals participate throughout the change process, from recognising the existence of an issue, explaining it, deciding on strategies to solve it and implementing solutions. There are broadly two mechanisms that explain media influence on social and behavioural change: (a) an individual or direct effect, and (b) a social or indirect effect (Arias, 2019). The individual or direct effect aligns with persuasion theories and there is little evidence to support it. The social effect has a more robust body of evidence and considers social influence as a coordination problem. These are situations where people want to participate if the others also participate as it validates their social membership and it

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makes them feel adequate when they compare with others (Goethals & Darley, 1987). Media can boost social coordination by creating common knowledge among their audiences (e.g., shared beliefs) that is known to be publicly available. This social effect is achieved based on the principle that individuals are exposed to the same information and everyone who receives the information knows that others also receive it, creating common knowledge (Arias, 2019). The social effect enables social representations to evolve collectively and to reinforce social identities. The fact that the information is public allows individuals to update their personal beliefs and the perception about how widely these beliefs are shared. In essence, media has an important role to play in terms of contributing to promote or challenge social norms, including shaping the perception of which behaviours would be accepted or censored by society, reinforcing existing identities, and to contribute to disseminate ideas that when discussed and accepted, contribute to shape social representations.

Case Study: Promoting Discussions with Adolescent Girls About HIV and Education Using Interactive Radio The Social and Health Context of Adolescent Girls and Young Women in Kenya Adolescent girls and young women are still disproportionately affected by HIV. In Eastern and Southern Africa in 2017, 79 per cent of new HIV infections among 10 to 19 year-olds were among females, and an estimated 50 adolescent girls die every day from AIDS-related illnesses. And each day, 460 adolescent girls become infected with HIV (UNAIDS, 2019). In Kenya, adolescent girls and women in the 15–24 age cohort account for 21 per cent of new infections (National AIDS Control Council, 2014).

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In 2014, the Kenyan Demographic and Health Survey (KNBS, 2015) reported that 64 per cent of male youths aged 15–24 years had comprehensive HIV knowledge compared to just 54percent of females within the same age cohort. This difference in knowledge contributes to girls and women being more vulnerable to HIV infection, especially during those years they become sexually active. In 2012, the Kenya AIDS Indicator Survey (NASCOP, 2014) revealed that 11.6 per cent of women aged 15 years had sex once; this figure increases to 59 per cent by the age of 18. Early sexual debut contributes to teenage pregnancy, rates of which are high in Kenya with 18 per cent of females aged 15–19 found to have given birth or being pregnant with their first child (KNBS, 2015). According to the National AIDS Control Council (2015), the HIV prevalence rate is highest in Siaya county at 24.1 per cent and double the national average (5.9 percent) in the informal settlement of Nairobi at 12 per cent. Both the marginal rural areas of Siaya County and the informal settlements of Kangemi and Mukuru in Nairobi County are at high risk of HIV given the high levels of poverty and accepted culture of violence, teenage pregnancy and drug and alcohol abuse. Additionally, primary and secondary schools in the targeted areas do not have adequate menstrual hygiene management and sanitation facilities in place. Teenage pregnancies create barriers to continued participation in formal education. Compared to boys, girls are also more likely to drop out of formal education. Data from 2014 (Kenyan Ministry of Education, Science and Technology, 2014), showed that net enrolment rates of boys and girls in primary education were almost equal at 95.3 per cent and 96.1 per cent in Siaya and 77.7 per cent and 77.9 per cent in Nairobi, respectively. However, gender gaps in net enrolment rates drop for both sexes in secondary school with rates of 67.7 per cent and 57.6 per cent for boys and girls recorded in Siaya and 27.5 per cent and 23.2 per cent in Nairobi. These figures illustrate that many girls do not progress or to remain in secondary education. Pregnancy is one of the reasons as to why girls may not have the financial means to return to education, may feel they have fallen behind after such an extended break and/or be bereft of social support at home, in the community or at school to return to their studies. Girls and young women can feel shame and stigma as a result of an unplanned pregnancy

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which can force them to withdraw from education. Many adolescent girls also leave school at the onset of puberty. These girls are often not able to access appropriate or adequate services, in particular water, sanitation and menstrual hygiene products. Girls may also be pushed to leave school when they reach puberty by family members who believe that they are ready for marriage; that they should contribute to domestic work or productive labour, or because boys’ education is prioritised. When adolescent girls leave school early they have lower levels of education and access to information on issues including: health, hygiene, sexuality, HIV, pregnancy and rights. Such girls are less able to make informed decisions and may be more vulnerable to sexual abuse and exploitation, early pregnancy and HIV infection. In addition, having been denied the possibility to learn essential life skills, girls will also have lower long-term livelihood prospects. This lowers their potential to secure social and economic mobility for themselves and their families and entrenches a cycle of impoverishment and vulnerability to HIV and Gender-based violence (GBV).

DREAMS Innovation Challenge The DREAMS (Determined, Resilient, Empowered, AIDS-free, Mentored and Safe) Innnovation Challenge is an public-private partnership to reduce rates of HIV among adolescent girls and young women (AGYW) in the highest HIV burden countries. In 2015, ten DREAMS countries in sub-Saharan Africa, including Kenya, Lesotho, Malawi, Mozambique, South Africa, Swaziland, Tanzania, Uganda, Zambia and Zimbabwe, accounted for nearly half of all the new HIV infections that occurred among AGYW globally (Saul et al, 2018). The project in Kenya focussed on supporting girls and young women in reducing their vulnerability to HIV infection and in completing their secondary school education. The areas of focus were Siaya county and two urban informal settlements in Nairobi (Kangemi and Mukuru) which have the highest HIV prevalence rates. The specific problem that this project seeks to address is the increased likelihood that adolescent girls and young women will drop out of school

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as a result of the lack of support available to effectively deal with genderrelated issues, specifically puberty, sexuality, reproductive health and HIV. The assumption is that young women have a right to live fulfilling lives in an environment that is safe and enables them to pursue their goals and aspirations in life. Harmful social norms related to the education of girls coupled with the absence of health and education services, knowledge gaps between girls and boys, and lack of opportunities are the biggest barriers for vulnerable girls and young women to live AIDS free lives and strive in education. To change these, the project purposefully sought support from and worked with the communities to challenge the negative social norms, perceptions towards girls and young women’s education, and other household-related barriers to their education. The project worked with communities to develop context and target specific media interventions which included the use of approaches aimed at identifying, listening to and influencing social groups that were part of the social contexts of girls and young women. Throughout the project partners worked with boys and young males, community gatekeepers (elders, religious leaders), duty bearers (teachers, education officials, local administration and Community Health Volunteers (CHVs). Working with the communities, the project involved support and services of key community gatekeepers to use their power and influence to drive positive social change through ‘community conversations’ to dialogue on communities.

Media Intervention The media intervention took place in the rural area of Siaya County and in two urban informal settlements in Nairobi (Mukuru and Kangemi) which have high HIV prevalence rates for adults aged over 15 years (Nairobi 6.1 per cent; Siaya 24.8 per cent, compared to a national average prevalence of 5.9 percent) (National AIDS Control Council, 2015). The implementation partner was Africa’ s Voices Foundation, a media organisation based in Nairobi.

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Radio programming is a cost-effective means of delivering information on puberty, sexual and reproductive health and HIV for adolescent girls and young women. The radio programmes inform the general community, duty bearers and gate keepers to challenge misconceptions and myths that exist in relation to HIV and the education of girls. Radio discussions can be thought of as large-scale focus groups— where diverse communities participate and different ideas flow. Through media discussions, people get the pulse of the opinions of other people and may develop a less hegemonic view of their communities. They may realise, for example, that not all school girls who are pregnant gave up school. Some social norms can be shifted by the perception that not everyone complies with the norm and that no sanctions are anticipated. Although information per se is not sufficient, it can offer a base for a more powerful discussion, based on accurate information. With this in mind, we prompted the discussions with carefully crafted information. These messages were tested through focus groups to ensure that they have the desired impact in stimulating the discussion. The content discussed is produced by the members of the communities, but beliefs that underpin healthful practices are given more attention and beliefs that are based on misinformation are deconstructed. We acknowledge that social change may take time and the radio shows are just one channel that prompts people to think about certain topics and bring these discussions to their life-contexts. Through the radio discussions, peoples’ ideas are challenged, and new alternative ways of thinking and behaving presented. But social change will happen gradually as people perceive others to have accepted new ideas or behaviour and will interiorise the new social norms. Several radio shows sparsed over time are needed to change the ideas and the perception of social norms in a gradual and sustained way. We worked with community radio stations in Siaya and Nairobi to produce and broadcast four interactive radio programmes on topics of relevance to adolescent girls and young women. Interactive radio broadcasts on issues relating to girl’s puberty, education, sexual and reproductive health, motherhood, the rights of girls and young women and availability of services. Radio programmes were developed through a participatory manner including the voices of adolescent girls and young

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women from the target communities to help foster identification with audiences. In order to elicit collective beliefs, we employed the use of vignettes in the radio questions. Vignettes are a technique used in qualitative research and have been defined by Finch (1987) as ‘short stories about hypothetical characters in specified circumstances, to whose situation the interviewee is invited to respond’ (p. 105). Vignettes are used in qualitative research to access cultural norms based on the beliefs that the participants share about a particular situation (CARE, 2017). Given that participants are asked to respond about a third party rather than themselves, this allows them to project their views onto someone else, and thus more freedom than in the case of personal experiences. With the exception of the second radio show which was on vulnerability to HIV infection, the vignettes were developed based on a group discussion held with adolescent girls and young women in Siaya at the inception of the project. This was an informal discussion to try and understand the situations and lived experiences among girls who had dropped out of school, specifically in relation to barriers to education, puberty, pregnancy, relationships and HIV. The radio show scripts were designed by the research team and tested through focus group discussions (FGDs) in Kangemi, Nairobi county, with adolescent girls and young women and young men from the community. The objective of the FGDs was to test the understanding of the radio scripts in terms of the language used (to be accessible and jargon-free), and the cultural adequacy, making sure that the scenarios and the questions were not open to multiple interpretations. Broadcasts were promoted in the target communities and girls and young women were encouraged to interact with the broadcasts via phone and short message service (SMS) by asking questions to panel members and sending in comments and opinions. Voices of members of the target groups were included in the broadcasts, meaning that audience members would be able to relate directly to the content, reinforcing a sense of selfidentity. This would contribute to a transformation of community beliefs and social norms that may influence change in practices.

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Results and Discussion This section focuses on a radio season of four radio shows in local languages in the rural area of Siaya and two informal urban settlements in Nairobi (Mukuru and Kangemi). Four interactive shows covered the following topics: ‘Barriers to Education’, ‘Vulnerability to HIV infection’, ‘HIV and stigma’, and ‘Pregnancy and education’. As well as informational, these radio programmes were interactive: girls and young women were encouraged to interact with the broadcasts via SMS; they were invited to ask questions to panel members, and to make comments and express their opinions. The radio discussions sparked spontaneous opinions from the target communities (not just the girls and young women), giving us an idea of the social context in which girls and young women face particular issues, and the cultural context in which these issues are embedded. For the data analyses, we applied a hybrid approach of thematic analysis, including both the data-driven approach outlined by Boyatzis (1998) and the deductive a priori template of codes approach outlined by Crabtree and Miller (1999). For the two shows, the coding framework was developed based on the ideas expressed in the messages. However, when grouping the codes into themes and organising themes, we relied on existing theoretical frameworks. For the last topic on education and pregnancy, we applied a purely data-driven approach to developing the coding framework and to grouping the codes into themes and organising themes. Radio show 1: Gender-based barriers to education Radio question: Atieno was a primary school student in your village who sat for her KCSE exams last year and got good marks. She wanted to become a teacher when she completes her studies. However, she dropped out of school after class 8 without giving reasons. What do you think were the reasons Atieno dropped out of school?

A total of 2613 people participated via SMS in the first radio show in response to a question on what they thought were the reasons why a girl

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in their community would have dropped out of school. The majority of participants were aged between 15 and 29 years old, and 69.9 per cent were female. From the SMS messages received, we developed a coding frame which had all the ideas contained in the messages grouped by basic themes. We used both an inductive approach and an a priori approach in developing the themes. Using a network model for thematic analysis (AttrideStirling, 2001), we sorted the basic themes into organising categories. The figure below is a thematic network that outlines the themes that developed from the data (Fig. 13.1). This network represents an exploration of participants’ opinions on the reasons why girls in Kenya drop out of school. King and Hill (1993) describe a framework for educational decision-making whereby actions that result in entering, continuing or dropping out of school occur at several sequential points or decision nodes. They state that at each point the decision for or against schooling may be influenced by characteristics of the individual, the home, the community, the school, and the school system (p. 110). Adapted from this framework, we identified these as the

Fig. 13.1

Thematic network on reasons for school dropout

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perceived loci of causality that would result in the girl dropping out of or continuing in school. In this case, the cause could be either internal, that is, arising from dispositional factors (personality, skills, motivation, values) and lifestyle of the girls (drugs use, sexual activity), or could be external, that is, as a result environmental, social and cultural factors that hinder girls to proceed in their education. Outcomes related to education are determined by a complex interplay of these factors as individuals are embedded simultaneously in social groups, families, communities. Radio show 2: Vulnerability to HIV infection Radio question: HIV prevalence in Siaya/Nairobi is among the top 3 counties in the country. Young girls and women specifically are more vulnerable; they contribute to 21 percent of all new HIV infections in Kenya. We are trying to understand what could explain this. In your opinion, what are the reasons for this high rate of HIV?

A total of 1074 people participated via SMS in the second radio show in response to a question on what they thought are the reasons for the high rate of HIV infection among adolescent girls and women in their area. The majority of participants were between 15–29 years, and 34.1 per cent were female. UNAIDS (2016) outlines a framework for organising factors that influence high HIV incidence among young women. This framework identifies a number of factors which drive acquisition and transmission of HIV, which can be grouped into behavioural, structural and biological factors. We adapted this framework in categorising the beliefs identified in the data, and expanded it to include one more category— social factors. This is the role played by interpersonal relationships within our environment as well as the role of social norms in influencing our behaviour. Our analysis identified four factors which are believed to increase the vulnerability of adolescent girls and young women to HIV infection: (1) Behavioural—risky sexual behaviour; (2) Biological—differences between girls and boys; (3) Social—Interpersonal environment; (4) Structural—contextual environment (Fig. 13.2).

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Fig. 13.2 Thematic network on vulnerability of adolescent girls and young women to HIV infection

Behavioural factors were the most frequently mentioned, as contributing to increased vulnerability of adolescent girls and young women to HIV infection. Within this category, lifestyle, sex and money was the most dominant theme, which in this case referred to girls getting involved in cross-generational relationships to be able to get money, and for some to be able to live a good lifestyle. This indicates a need to highlight this issue in discussion with girls and the importance of targeting men in the community and finding ways to sensitise them on their role in reducing the vulnerability of adolescent girls and women. Radio show 3: HIV and stigma Radio question: [Adhiambo/Lisa] is a good student and is HIV positive. She is worried about how others would treat her if they found out. Do you think she should tell her teachers about her status? Yes/No? Why?

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A total of 634 people participated via SMS in the third radio show in response to the question on whether a girl who was HIV positive should disclose her status to her teacher in school or not. The majority of participants were between 15–29 years, and 34.8 per cent of participants were female. We found that the decision on whether or not to disclose is largely driven by the person one is disclosing to, which in our case was the teacher. There was a concern on whether or not teachers can be trusted with the information, and whether or not they would misuse the information and thereby harm the student (Fig. 13.3). Our thematic analysis has shown that the decision on whether or not to disclose one’s HIV status in the school setting is driven by weighing the possible positive consequences or rewards against the possible costs or negative consequences. We grouped the themes that emerged into six categories, with three categories for the themes that were supporting disclosure, and another three categories for those against. The categories were derived from the Consequence Theory of HIV disclosure, proposed

Fig. 13.3 teacher

Thematic network on whether or not to disclose HIV status to a

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by Serovich et al. (2008). Their theory was based on the same assumptions as the Social Exchange Theory (Thibaut & Kelley, 2008), which argues that when faced with choices, individuals tend to choose those that would provide the most rewards with the least associated costs. They maintained that for people living with HIV, there are potential negative consequences or costs, as well as positive consequences or rewards. These could be emotional, social or physical, among others. Based on the themes that emerged, we classified them into these three categories: emotional, social and physical, as shown in the web below (Fig. 13.4). Radio show 4: Pregnancy and education Radio question: [Akumu/Val] is a Form 2 student in your village who got pregnant and dropped out of school to give birth and nurse the baby. Now the baby is 6 months old, she has told her parents that she would like to go back to school and complete her secondary school education.

Fig. 13.4

Thematic network on consequences of disclosure HIV status

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In your opinion, should her parents support/allow her to go back to school? Yes or no? Why?

A total of 1245 people participated via SMS in the final radio show in response to the question on whether a girl who had gotten pregnant and stopped school to give birth and nurse the baby, should be supported to go back to school. The majority of participants were between 15 and 29 years old. This show had the highest proportion of female participation (46.5 percent) compared to the previous two shows. The majority of the participants felt that she should be allowed to go back to school. The most dominant theme however among those supporting her education, was ‘under certain conditions’, indicating that it was a conditional ‘yes’, dependent certain factors: whether she had nursed the baby, whether she had changed her lifestyle, if she was committed to education, if she received psychological counselling, if she received the necessary support from friends and family, or if she was still young. Even though there was a positive intention from the messages received for her to go back to school, there are some beliefs that may prevent her from going back to school. Some of these are within the girl’s control, and some are out of her control. These results suggest that interventions designed to encourage girls to go back to school and complete their education after pregnancy should take into account the surrounding circumstances that could potentially be facilitators or barriers.

Discussion and Impact The insights that were gathered from the radio shows were incorporated into the design of a DREAMS project. The first radio show on the reasons why girls drop out of schools was done at the beginning of the programme implementation, and highlighted five key agents in whether a girl completes secondary school: the individual (the girl herself ), her home and family, her social group (peers, relationships), her community and socio-cultural factors, and the learning and school environment. It was noted that the planned activities were only targeted the individual, community and school levels, and therefore there was a need to expand

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the activities to include family and the social group. This was done with the participation of the families of the girls who were involved in the programme, as well as targeting interventions for male involvement. We also had sessions with the girls in the two communities to share the insights from the project as a means to validate the findings and also to enlighten them on the various challenges affecting girls. In some cases, the discussions with communities stressed information that had already emerged during implementation, such as school fees being the main reason for drop out, and the need to engage men and boys in the community. The insights were useful in highlighting that we needed to provide feedback to stakeholders in the schools on how learning and school environments affects the retention of girls in schools to enable decision makers to create a conducive learning environment for all the students. During a dissemination session with members from the Nairobi County and the National AIDS Control Council (NACC), it was noted that the data collected during the radio show on HIV showed considerable misinformation and gaps on sexual and reproductive health and sex education. However, data from the KDHS survey shows that there is knowledge on the prevention of HIV, and this was an indication to them that knowledge surveys do not capture hidden trends and nuances, wrong beliefs specific to a particular group. They noted that at the time most of the organisations in Nairobi that were targeted at reducing HIV infections were doing biomedical interventions, and only a handful was doing behavioural interventions. This project demonstrated the need for social norms interventions, as the rate of HIV infection among adolescent girls was still on the rise despite all the effort.

Concluding Remarks The media intervention demonstrated how radio can be a powerful tool to elicit opinions from the communities to access the beliefs and social representations that underpin social norms and cultural practices. These insights can be incorporated into other community interventions that support adolescent girls and young women to transition from primary

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to secondary school, return to secondary school if they have dropped out, and complete their secondary school education. The solution that followed from the media project was to establish Bridge Centres to support adolescent girls and young women who have dropped out or who are at risk of dropping out of school in Siaya and Nairobi counties to provide accelerated education, tailored services, and capacity building. Through established community structures and household visits by Community Health Workers (CHWs), vulnerable girls and young mothers infected or at risk of infection were identified and recruited to join the established and strengthened Bridge Centres. The research suggested a need to incorporate HIV infection, lifestyle, sex and money as a topic of discussion in the centres as well as with the wider community during community forums. This insight also underlines the key role that is played by boys in the issue of reducing the vulnerability of girls and young women, and therefore the need to target men in the community who may be partners of the girls in cross-generational relationships.

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14 Combating Malaria in Nigeria’s Rural Communities Through Indigenous Communication Strategies Ntiense J. Usua

Introduction In Nigeria, half of the population is infected with malaria at least once a year and in children about 2–4 times yearly (National Malaria Control Programme, 2009). Pregnant women are very vulnerable to malaria induced miscarriages and low birth weights. Malaria is a preventable disease and major efforts have been put in place including mass media campaigns, against its spread but the current advocacy campaigns have not yielded desired results. The Nigeria Malaria Indicator Survey (2015) shows that malaria still accounts for about 60 percent of outpatient visits and 30 percent of admissions. The report shows that the disease contributes up to 11 percent of maternal mortality, 25 percent of infant mortality, and 30 percent of under 5 deaths. Also, it estimates that N. J. Usua (B) University of Port Harcourt, Port Harcourt, Nigeria e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_14

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110 million clinically diagnosed cases of malaria and about 300,000 malaria-related deaths occur in the country every year. Nigeria is still largely rural and this population group contributes the largest proportion of the total malaria burden, buttressing suggestions that current mass media dominated efforts need be complemented with indigenous communication strategies. Besides the fact that rural dwellers are not adequately reached by the media which are mostly urban-based and city-focused, there are also issues of trust, a fall out from the political arena which makes enlisting the interest of an already disappointed and excluded public difficult (Nwodo, 2013; Ihejirika & Usua, 2016; Nwachukwu & Usua, 2009). It is important to note that the media in Nigeria are largely government owned, and those that serve the rural areas are mostly owned by the government. The private media are limited to the city centers for commercial purposes. Most of what is relayed in the rural areas are thus government communication from state and federal governments. Reaching the rural population and gaining their trust has thus made scholars (Nwachukwu & Usua, 2009; Oso, 2012) to suggest the use of alternatives or at least complementary means in campaign and advocacy communications. There are numerous advantages in using indigenous communication channels such as folk tales, story-telling, music, dance, masquerade, festivals, women and age grade meetings, elders’ council, and town hall meetings, all conducted in local languages and idioms, to reach the rural people. The focus of this chapter is to outline ways in which indigenous communication strategies can be used in the campaign against malaria in rural communities. The work is anchored on source credibility and uses and gratification theories.

Source Credibility Theory This theory, developed by Carl Hovland and Walter Weiss (1951) posits that the source variable is an important part of communication especially its role in determining the outcome of any communication effort. This, as the theory states, is because not only will a credible source attract greater patronage, it has the potential of also inducing trust and believability. Anaeto et al., (2008, p. 76) argue that having the right

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source can increase the effectiveness of a message. Trustworthiness is a prominent dimension of source credibility discourse (Hovland & Weiss, 1951). A study by Whitehead, cited in Anaeto et al. (2008) revealed that trustworthiness and objectivity are important factors in determining the credibility of any medium. Unfortunately, recent literature and studies point at public disappointments and expressions of low level of trust in conventional media in Nigeria. For example, a study on Radio Nigeria, a leading media organization in Africa showed that many people did not perceive the radio network to be trustworthy (see Usua, 2006).

Uses and Gratifications Theory Uses and gratifications theory is generally recognized to be a sub tradition of media effects research (McQuail, 2005; Ruggiero, 2000). The theory postulates that people are exposed to different channels, different media organizations, and different media products for different reasons (Severin and Tankard, in Iloke, 2018). The theory became popular after the study by Katz, Blumler, and Gurevitch (1974) regarded as the progenitors of this theory. Before their study, questions about the way members of the public used the media had begun to agitate people’s minds. For instance, Lazarsfeld and Stanton (1942, 1944 and 1949) had shown interest in finding out the reasons for the popularity of the different radio programs of that time. Other studies (Herzog, 1944; Warner & Henry, 1948) were carried out to determine why people used the mass media. Dominick (2007), argues that uses and gratifications suggest the shift of attention from micro analysis of the influence of the media to the microanalysis which pays attention to what the individual wants, as audience members have needs or drives that are satisfied by using both non-media and media sources.

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The Nature of Indigenous African Communication System Rituals, Music, Dance, and Tale Performance In traditional African societies, expressive communication such as speech or spoken words as well as symbols and sign writing are used directly to give information, share opinions and give directives in entertaining and compelling manner. The communication system is a complex network that operates at different levels of the society (Wilson, 1990; Agbo et al., 2013). It is a unique culture-based, community-focused and problemsolving system which prepares community members from childhood, for whatever challenges they may face in the future. It could be performative, demonstrative, expressive, institutional or group-oriented but often used in combination of more than one for specific objectives. All communication programs in traditional African societies are wrapped in very high levels of entertainment, ostensibly to embed the message in the receiver’s sub-conscious mind. African communication is rooted in rituals, worship practices, and magic because the people have very strong affinity with the spirit world. The belief system is predicated on the reconciliation of the visible universe and the invisible world of the human and the divine (Trowel, 1970). The reconciliation is believed to be made possible through rituals and the worship of those forces that control both humans and the environment. Thompson (1946) notes that from ritual and magic, man endeavored to impose illusion on reality so that what initially served the function of resolving the physical conflict between humans and their environments gradually got recreated for entertainment and by extension, became communication. Ritual practices and rites eventually became idealized so that myths, stories, tales, songs, proverbs, and others could serve as means of expressing man’s wishes (Ochigbo & Nya, 2009). Further modifications and alterations made it possible to isolate the myths which had developed around rituals from entertainment practices. The result of this development is that daily events and cultural developments are shared through stories, songs and dances (UNESCO, 1981). Music, dance, poetry, drama, gestures, masquerade, festivals,

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story-telling, costumes, and make-up are all used in traditional societies as channels through which experiences and feelings are shared and they have gradually become strong media of communication (Wilson, 1990; Okpanachi, 1992; Nketia, 1975; Razaki, 2002; Okoro, 2008; Kur & Orhewere, 2009). Music is not just a medium of entertainment but a vehicle for the spread of ideas and doctrines and the types of music performed in Africa have the capacity for emotional expression, esthetic enjoyment, entertainment, and physical response (Idolor, 2002; Wilson, 1990). They also enforce conformity to social norms, validate social institutions and religious rituals as well as contribute to the continuity and stability of culture and society. Besides being an essential part of the culture of the people, it has a way of expressing knowledge that often goes beyond the provision of aural gratification and meaning transmission to spiritual relevance (Bame, 1998; Egere, 2012). Attali (1985) considers music as prophecy that goes ahead of the rest of the society because: It explores much faster than material reality can, the entire range of possibilities in a given code. It makes audible, the new world that will gradually become visible, that will impose itself and regulate the order of things; it is not only the image of things, but the transcending of everyday, the herald of the future (p. 11).

Traditional African music carries such values as social cohesion and liberation (Egere, 2012; Okoro, 2010), and the songs themselves may be composed to warn, entertain or simply inform (Anaeto & Solo-Anaeto, 2010). It may be performed by an individual, group, or the entire community, yet the music maker and the entire community people use it as a community property through which the opinions of individuals or the decisions, doctrines, and beliefs of the community are expressed. Music and dance are performed complementarily. Okoro (2008) notes that they are aural and visual perception-oriented arts with potent and pervasive diffusiveness which establish their capacity in cultural propagation and their respective or combined presence yields attraction, influence, acceptance or rejection of ideologies, entertainment, models,

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and didactics which work together for the good of the society. Therefore dance, like music, satisfies entertainment and educational needs as well as serves cultural promotion and mobilization functions. Irisoanga (2007) adds that dance has been playing a major role in education since the beginning of man’s history because in societies where formal education did not exist, children learned needed skills for adult living from their elders who performed dances on virtually every occasion— birth, death, marriage, sickness, war, and hunting, as well as during events to honor outstanding personalities or to appease the gods and spirits. For Razaki, (2002), the dance composer, like any other communicator who has something to say, uses para-linguistic elements like body movements, facial expressions, gestures, spatial placements, spatial configuration, spatial relationships, floor pattern, colors, costumes, and make-up. Similarly, Ojuade (2006) looks at dance as the link between non-verbal and verbal communication which fills the gaps in human knowledge, which cannot be acquired by other means. Traditional poetry, praise-singing, and storytelling are also used for information and knowledge sharing. Poetry documents feelings and expresses social ills of both the leaders and the led (Okon, 2012). Praisesingers and storytellers create systems of discourse that instruct and entertain as well as keep records and chronicle births, deaths, and the history of relationships within and outside the communities (Kur & Orhewere, 2009). These tale performances according to Nwanne (2006), may take the form of folklore and their thematic contents represent the thought system of the society which owns the tales. Story performance is a communal property that is familiar to members. Hence, like music and dance, tales communicate the community’s history and origin, its collective experiences, fears, and aspirations especially where there is no written language (Gbilekaa, 2002). The function of tale is demonstrated in the study carried out by Ukala (cited by Nwanne, 2006), which shows that the folktale, performed through various themes, teach people the good ways of life with themes warning against, at least, twenty-two vices and offenses some of which prescribe the death penalty.

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Festivals, Masquerades and Colors Masquerade performance both entertain and teach. Okpanachi (1992) observes that it is a means through which people in rural communities in Africa, communicate among themselves. A study, (Usua, 2014) shows that the masquerade institution is used in some communities to enforce rules. But for Wilson (1990), masquerade is spiritually akin to the Christian ritual and the cultural communication of the norms and mores of the society or group. However, Agu (2010) sees the masquerade as having specific educational functions because it is not just an art, but the content and form are characterized by the type of learning that is capable of transforming an individual into a social and public personality. Colors and dress patterns as visual modes of communication (Wilson, 1990), are important in the traditional African scene because they communicate certain feelings, emotions, and attitudes, just as they serve entertainment purpose. For Kur and Orhewere (2009), clothes and colors are esthetically appealing and penetrating and the communication becomes better when they are used with oral aspects like narrative, poetry as well as riddles and jokes, combined with visual and spiritual aspects such as dances, symbols, deities, tricksters and animism to present a message. The festival as a component of the traditional African communication system equally plays an important role in the society. It provides the forum for the promotion of good relationship, sharing of cherished values among people, reinforcement of beliefs, and the re-enactment of history (Hagher, 1990). The festival may be seen as a book of norms and forum for integration. As a communal activity, it is the melting pot of all other performances. It provides the avenue for the display of the splendor of costumes and colors, masquerade displays, the creativity of praise-singers and storytellers as well as other practices like proverbs, gestures, and facial expressions which all add up to form the traditional African communication system.

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Institutions, Groups, Venues, and Opinion Leaders Institutional as well as group and venue-oriented modes of communication such as elders’ council, women groups, age grades, and market square meetings are well known in African societies as effective avenues for information dissemination. These groups meet regularly to discuss issues including those that affect the health of their families and the general wellbeing of the community. Information shared at such meetings and decisions taken are binding on all and those who flout them are often penalized. The elder’s council, being the highest decision-making body in the community, is responsible for making decisions and is held in high esteem. Getting the buy-in of this group is as good as winning the cooperation of the entire community. Decisions taken at the elder’s council and actions prescribed are conveyed to the people both at the town hall during meetings and through the town crier. The town crier re-enforces the information, reaches those who were unable to attend the meeting and using his tools—attention calling musical instruments, the creative use of language (anecdotes, proverbs), and the elements of drama—engages the peoples’ attention to listen to the message, often relayed several times, for maximum effect. The market square, on its part, affords women access to gossips and rumors circulating in the community for deliberation. The market is a place to share views, opinions, and experiences and proffer solutions to personal, family, and community problems. The communication strategies discussed above serve the communities in which they are used or performed in the same ways that radio, television, newspaper, magazine, the Internet, and related facilities serve the public in urban communities. But while the rural dwellers have less access to these modern facilities, they also hardly trust the mass media enough to take their messages seriously. These factors make traditional communication strategies a viable option for advocacy and mobilization.

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Source Credibility, Uses and Gratifications, and Indigenous Communication Strategies in the Campaign Against Malaria Ritual practices are associated with the forebears and the spirit world and are trusted means of solving problems. Music, dance, and tales have been used over the centuries as means of expressing feelings, opinions, and desires and for telling authentic stories. The people participate both as audience members and co-performers so that the communication actually becomes theirs. These communication modes are seen by the people as trustworthy avenues, trustworthiness being the basic consideration in communication, according to source credibility theory. The theory thus provides plausible explanations for their effectiveness in the anti-malaria campaign. Those who constitute the elders’ council and leaders of social groups are made of personalities that the community members have lived with for many years. Some of them are selected based on conditions of credibility and trustworthiness, to represent the different family units and kindred, and having worked for the community over a period, they are trusted enough to convince the people on issues that affect the community. This is the basis upon which the use of these groups as information sources in the campaign against malaria is also likely to be a rewarding effort and in line with source credibility theory. The same applies to youth group leaders and the town crier. Masquerade and other cult members derive their credibility from the notion of affinity with the spirit world or forebears whom they represent. The players are public personalities who are often seen to be truthful, trustworthy, and acting in the interest of the society. During festivals, they are believed to act to represent the gods or forefathers. Mass media sources may not be seen as equally trustworthy being far removed from the people, besides being closely associated with the “untrustworthy” political class. Media messages may therefore be used solely for entertainment purposes when available and not serve the greater interest as sources of credible information for the community. Even though traditional communication strategies entertain, their greater advantage is in

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the way the rural people take information from them seriously (Usua, 2014).

Applying Indigenous Communication Strategies in the Campaign Against Malaria in Rural Nigeria Entertainment value, as argued, serves as the vehicle that conveys important messages shared by the communicator in traditional African communication system. Applying the principles and apparatuses of this system to the malaria campaign is likely to be well received by the rural people in Nigeria. This assertion is premised on the fact that this communication system is already part of the everyday living of the rural communities and is linked to the world of the supernatural as demonstrated in the application of elements of rituals, magic, and other worship practices. Magic and rituals, already part of the everyday behavior of rural society stands a great chance of enhancing the malaria advocacy and campaign (see Ogunbiyi, in Usua, 2014). African music is composed in the language of the people. It serves informative and educational functions yet wrapped in the entertainment that music is known for and at the same time linked to the belief system of the traditional society. These guarantee believability, ownership, and understanding as well as evoke a feeling of relationship between the message and the spirit world of the people’s forebears. Engaging traditional music composers to infuse relevant messages about malaria into their compositions is undoubtedly a way of getting the full attention of rural people and adequately exposing them to the messages because the composers themselves are not only believed to be inspired by the forces that are above humans, they often bring their creative prowess to bear so that while the receivers derive amusement from the music, they naturally imbibe the inherent messages in the songs (Bame, 1998; Nketia in Usua, 2014; Egere, 2012; Idolor, 2002). Music as an act of entertainment and communication is performed alongside dance. Since as Okoro, (2008) has observed, their combined

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presence yields attraction, influence and acceptance, its adoption and adaptation in spreading information about malaria and its prevention can be a very effective approach to solving the problem. Dance steps in Africa are not only pulsating entertainment, they also carry concrete messages that inform and educate. Every act of facial expression, body movement, and use of space as elements of traditional African dance is an act of communication. These acts are what the dancers should be enlisted to adopt to covey messages about malaria. Similarly, symbols, signs, make-up, and body adornment as well as costumes and other paraphernalia of traditional dances, used as elements of communication, can easily be used by traditional dancers in Nigeria’s rural communities to drive home the message about malaria. Dance has been used to teach children needed skills for existence and plays a major role in virtually every occasion from birth, death, marriage to sickness, war, and hunting among other events and is carried out to appease the gods and spirits (Egere, 2012; Irisoanga, 2007; Razaki, 2002). It thus has great potentials in the campaign against malaria scourge if purposefully applied. In the same manner, tale performances constitute a strong communication strategy in rural communities in Nigeria. Their roles in record keeping and preservation of the history of the people is a strong indication of their possibilities in fighting the malaria scourge. Like the music composer, relevant agencies and groups concerned about the impact of malaria can engage traditional storytellers, praise-singers, and traditional poets to build relevant information about the disease and how it can be prevented into their renditions. Poetry is known in the way it helps document social ills (Okon, 2012), it is adopted to document behaviors that exacerbate the malaria situation while also promoting actions that are needed to prevent the spread of malaria and advocate for change. Also, the way the praise-singer uses his trade to popularize the exploits of kings, warriors, and acts of benevolence by some members of the community, can be used to publicize and popularize accepted behaviors like keeping clean environments which in the end helps in the fight against malaria. Similarly, having noted that storytellers are not only news and information bearers but as well creators of systems of discourse to educate (Anaeto & Solo-Anaeto, 2010; Kur & Orhewere, 2009), they could be made to replicate this function in the

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fight against malaria. With their stories weaved around the devastation of malaria scourge and ways it can be mitigated, it will serve useful purposes because of the potential not only in calling attention of the people to the situation, but also in causing reorientation through the discourses that their stories will generate. One of the advantages of using story-telling in campaigns is that though the story may be created by the professional storyteller, it soon gains popularity and ownership of the entire community to the extent that overtime, the people themselves become tellers of the story. Therefore, in adopting the story-telling approach, the rural people will become both encoders and decoders of the malaria message. Traditional tale performers themselves being influential figures in traditional communities just like music and film stars are in contemporary ones, should be made to play roles similar to those of the artists in the modern entertainment industry in the malaria campaign. That testimonial role, in addition to the inherent messages in the stories they tell, will go a long way in combating malaria in Nigeria. The masquerade, both as a performance and as an institution used to entertain and teach as well as in solving other societal issues in rural areas has been documented (Okpanachi, 1992; Usua, 2014). Its policing function can be useful in ensuring that recalcitrant members of the rural areas are made to obey set rules particularly as touching on the adoption of certain behaviors needed to help reduce malaria spread. Some of the masquerades are traditionally believed to have links with the spirit world. Their engagement in the fight against malaria will equally be seen as both approval and a call by the forebears on the people to support the fight. This is because the notion that these masquerades are representatives of the gods has been part of the psyche of the traditional African people for centuries and may not be discarded in a hurry. Colors and dress patterns as visual modes of communication in traditional systems perform the same functions as costume and colors in television and film production (Wilson, 1990). They could be used to effectively equate the complement that television and film receive from these elements in disseminating vital messages to the audience. Both modes of communication will help call attention and explain in non-verbal terms, ideas, and situations about malaria pandemic.

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Costumes are esthetically appealing and penetrating combined with visual and spiritual aspects such as dances, symbols, deities, tricksters, and animism to present messages to rural people who are more at home with these elements and who easily understand the messages associated with different colors and dress patterns than written and spoken communication used in the mass media. The fight against malaria is likely to be more successful with these strategies. Institutional and venue-oriented modes of communication (elder’s council, women groups, age grades and market square) as effective means of information dissemination will equally be effective in the malaria campaign. Relevant agencies can interface with these groups to canvass the issues concerning malaria and its prevention. Through the leaders of these groups, the consents of the entire members will be secured and needed actions ensured. The elder’s council as the decision-making body and respected institution in the community will be in a good position to carry members along in the campaign. When decisions are taken at the elder’s council and actions prescribed in respect to what the people should do to reduce the impact of malaria, reinforcement of the message will be ensured using the town crier who employs anecdotes, proverbs, wise sayings, and repetition, along with the elements of drama, to drive home the message. It is at festivals that we see the culmination of communication efforts of traditional African communities where various activities and strategies are brought together in a week or days of intense display of entertainment, information, and education all at once. Festivals bring the people from far and near and puts them in a receptive mood, full of expectation yet in some level of sobriety that makes any persuasion and advocacy well received. The joyous mood of the festival days, the variety in entertainment cum education activities; from captivating and penetrative traditional music and intricate and pulsating dance steps to breath-taking masquerade displays; from engaging oratory of the praise-singers and storytellers to the thought-provoking renditions of the traditional poets, messages about prevention and treatment of malaria deliberately built into the various components of the festival are likely to sit well among the people. With the high spirit of community that festivals evoke, the use of instruments and channels of communication in spreading

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the malaria message during these festivals presents a great potential for positive outcomes.

Conclusion Malaria burden is one of the greatest concerns of governments in Africa and other regions in the Third world. Nigeria, with the largest population in Africa, estimated at 180 million, has the bulk of malaria cases on the continent and a large percentage of global burden. The logical supposition from this situation is that current efforts, based largely on the mass media approach, are not as influential enough to drive the needed behavioral change in Nigeria’s rural communities. While it is true that the rural population is largely illiterate and with limited access to mass media messages, public opprobrium and loss of confidence in the media and media workers, may have further reduced the capacity of the mass media in the rural communities. With the lack of trust in the media, credibility suffers, and the people fail to attach seriousness to the campaign executed in the media. This situation, which supports source credibility theory, justifies the call for alternative communication strategies. Similarly, in line with the postulations of uses and gratification theory, those who can afford mass media facilities may focus on interests other than behavior change information. In seeking a solution, especially such that requires a change of attitude, to malaria, a system and apparatus that best communicates to that rural audience is required. The specificity of indigenous media, their simplicity, entertainment component, and the fact that by the virtue of their use, the people are bound to see themselves as part of the communication process, combine to give this system the potential to rapidly change the perception and attitude of rural Nigerians and contain the malaria scourge.

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15 The value of the Fusion of Indigenous and Contemporary Knowledge in Developing Communication as Interventions to Reduce Teenage Pregnancy in South Africa Konosoang Sobane, Isaac Riba, and Wilfred Lunga

Teenage Pregnancy Trends and the Challenges it Presents Efforts to reduce teenage pregnancies have been on the development agenda for decades, particularly in less developed countries where teenage pregnancy rates remain high. According to Gunawardena et al (2019), sub-Saharan Africa is among regions with the highest prevalence of teenage pregnancy in the world. In South Africa more than 30% of teenage girls fall pregnant each year, and between 65 and 71% youth K. Sobane (B) Human Sciences Research Council and UNISA, Pretoria, South Africa e-mail: [email protected] I. Riba University of Limpopo, Mankweng, South Africa W. Lunga Human Sciences Research Council and African Centre for Disaster Studies (ACDS), North West University, Potchefstroom, South Africa © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_15

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pregnancies are unplanned (Adeniyi et al., 2018; Willan, 2013). The rates are predominantly higher in rural areas (see Le Roux et al., 2019) as evidenced by a high rate of adolescent pregnancies in the rural Eastern Cape province. Teenage pregnancy has complex psycho-social and socio-economic effects on, not only the mother and the baby, but also their families and the larger life ecosystem within which they exist. However, it should be noted that the challenges may not necessarily be generalizable because the experiences and the contexts in which teenage pregnancy occurs varies (Timaeus & Moultrie, 2015). Some of these young women also face health challenges including a greater risk of anaemia and premature labour compared to older women; often have poor dietary habits and inadequate nutrition that compromises the health of the unborn baby and are more likely to experience pregnancy complications (Grover & Sandhu, 2009). These young mothers are also often vulnerable to dropping off from school due to stigma or have poor educational outcomes if they stay (Shefer et al., 2013; Menendez & Mutevedzi, 2015). Literature shows that these challenges become more illuminated in the rural areas where there are other multi-dimensional challenges, including socio-economic status of the family (Macleod, 2014, p. 142). In many societies teenage pregnancy still attracts social stigma, thus making it difficult for teen mothers to feel as part of their own communities or peers. Nkani and Bhana (2016) and Singh and Hamid (2016) allude to the presence of parental disapproval of pregnancy at schoolgoing age and continued societal disapproval of pregnancy among young women who are in school. This necessitates continued education and communication about teenage pregnancy to the public at large. Singh and Hamid (2016) argue that increased support from parents and teachers and the policy that allows pregnant learners and teenage mothers to return to school have contributed to reducing stigma.

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The Value of Communication in Combatting Teenage Pregnancy in Rural Areas The complexity of the challenges emanating from teenage pregnancy necessitates multi-dimensional communication interventions that are context-specific and culturally sensitive (Aziato et al., 2017). Such approaches should consider the literacy levels of target communities and the cultural conceptualisations of teenage pregnancy because these have a strong influence on the extent to which the message is understood, accepted and taken up for behavioural change. They should also be informed by available indigenous knowledge since that entails cultural practices and norms that could facilitate effective and targeted communication, buy-in and uptake by target communities. A particularly important avenue in curbing teenage pregnancy is open communication about sex and sexuality between adults and teenagers as highlighted in the studies conducted in rural South Africa (Mkhwanazi, 2017; Mudhovozi et al., 2012). According to Mturi (2015, p. 2), there is a need to find ways to improve parent-daughter communication about sex earlier in life as part of measures to prevent the girls from falling pregnant prematurely. This is because research has shown that although other influencers such as peers and multi-media are also largely at play, adolescents’ attitudes towards sexuality and part of their sexual behaviours and activities are to some extent influenced by the sexual values that parents exerted on them and their communication about sex with their parents (Mudovhozi et al., 2012). This implies that where there is good communication about sex between adults and teenagers, such teenagers become equipped with information that helps them in decision-making about safe sex and perhaps sex debut and are therefore equipped to avoid unplanned pregnancies. Adults’ experiential knowledge becomes an important tool that can be harnessed in conceptualising efforts to communicate to teenagers about pregnancy. On top of experiential knowledge, parents and elders are seen as a source of indigenous knowledge which teenagers can learn from. This includes knowledge of indigenous cultural practices that can help teenagers effectively manage the sex changes that happen in their

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bodies (Fershtman et al., 2011), as well as taboos and avoidance practices that delay sex debut and help teenagers to manage their sexual activity (White, 2015). Thus, there is great value in creating partnerships between adults and teenagers in sex education. Maluleke (2007) advocates the promotion of these partnerships in sex education to ensure that young people make informed choices. According to Maluleke, a wealth of indigenous knowledge for teenage pregnancy prevention is available in most communities and can be passed to young generations by integrating them into adult-adolescent communication and in the design of sexual health promotion interventions. Communicating and engaging teenagers with indigenous knowledge ensures that teenagers have access to a diverse range of options and that their decision-making is informed by a wide array of knowledge systems. Despite the widely acknowledged value of parent and adult-teenager communication and engagement about issues of sex and sexuality, Makiwane (2010) argues that this kind of communication is still very scarce resulting in a gap of information among young people in South Africa. Mothiba and Maputle (2012) attribute this gap to parents’ reluctance to make sex education and contraceptives available to their teenagers or engage their teenagers about sex, because of the fear that they might interpret it as permission to engage in sexual activities. Another communication challenge identified by intervention research is the stigmatisation of teenage pregnancy that makes it somewhat a taboo topic between parents and teenagers. This stigma does not only pose a challenge to communication but it also affects teenagers’ access to sexual health services. Cooper et al. (2016) found that teenagers face challenges in accessing public sector contraceptive services due to judgemental attitudes from many healthcare providers for being sexually active. Peer-led counselling, sexual and reproductive health education and contraceptive availability have also been found to be effective in increasing adolescent knowledge about sexual health and contraceptive use and thus decreasing adolescent pregnancy (Salam et al., 2016). The value of one on one peer counselling sessions is that they become a communication platform for engagements which also allows the target teenagers to enquire on some of the pertinent issues that they wouldn’t have been able to talk about with adults. Counselling done by peers who

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have had the same experiences has been found to be a useful tool in HIV/AIDS contexts (Gusdal et al., 2011).

Key Considerations in Conceptualising Communication Interventions About Sexual Reproductive Health Efforts to develop communication interventions should draw from existing practices and norms of the societies they target. One such practice is the silence on issues of sex and sexuality in some African communities. According to Ramathuba and Mashapa, (2019) in such communities these topics are not openly discussed especially with young adults. Thus, because parents and caregivers do not freely talk about this, communities have developed platforms and practices in which adolescents are educated about sexuality (Mudhovozi et al., 2012). Such practices include initiation schools where senior members of a family also play an important role in educating the youth about sexuality. Such co-produced communication interventions ensure wider coverage and uptake among the youths who benefit from the knowledge of the adults. Contextual factors that are potential predictors of teenage pregnancy are also key considerations that have to be taken into account. Mkhwanazi (2017) argues for the use of Social Disorganisation Theory in the understanding of teenage pregnancy and its contextual factors before developing a communication intervention. Social disorganisation is defined as the inability of community members to achieve shared values or to jointly solve experienced problems emanating within the household and society. The theory implicitly advocates for the inclusion of moral values in sexual health education. Mkhwanazi (2017) further explains that the theory specifically helps to understand why teenage pregnancy is higher in some households and communities than others as well as the household and the community level variables within such contexts (above and beyond individual-level characteristics) that foster teenage pregnancy in South Africa (Mkhwanazi, 2017, p. 49). When there is adequate understanding of the specific contextual factors that

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account for teenage pregnancy, messaging in a communication intervention gets framed to account for such factors and are therefore more contextually relevant. Another key considerations is culture since it determines how people react to and consume messaging. Dutta (2015) argues for the inclusion of culture-centred approaches in health communication. Such ecological and cultural approaches serve to inform communication interventions that consider structural determinants of health, and move away from reductionist approaches that propagate shame and disgrace for teenage pregnancy and motherhood. In multicultural contexts such as South Africa, culturally centred approaches require meaningful engagements and intercultural dialogues that may need to include voices that have traditionally been excluded (De Palma & Francis, 2014). Interventions need to also take an ecological approach that recognises the father of the conceived child; the peers with whom she spends time; and the school that she attends. By giving attention to local contours of sexuality and the operation of sexuality in different contexts, interventions may have better chances of success in addressing the issue of unplanned teenage fatherhood (Mvune et al., 2019, p. 158). This set of key considerations is not comprehensive, but it is an indication that developing a communication intervention to combat teenage pregnancy requires critical thought and a deep understanding of the target community. According to Maluleke (2003), education about sexuality needs to address the multi-dimensionality of a person including the biological, socio-cultural, psychological and spiritual, including the skills to communicate effectively and make responsible decisions. A clear understanding of all these factors informs the ways in which the messages are designed and helps to predict possible enablers and disablers of uptake, and thus the potential effectiveness of the intervention.

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Selected Indigenous Practices of Communicating to Combat Teenage Pregnancy We argue in this paper that indigenous knowledge systems on teenage pregnancy have some good qualities and traits that can be harnessed to inform contemporary interventions. Seroto (2011, p. 79) explained that indigenous education in Africa was practised in two ways: informally through parents and elders in society in a socialisation process and formally through initiation rites or apprenticeship/craftsmen. Initiation rites and various rituals to mark the passage from childhood to adulthood were cultural devices that were used to inculcate the spirit of communalism in the youth. An initiation ritual includes any system of rites that are done regularly in a set, precise manner whereby a child or adolescent is made a member of a sect or society and invested with a particular status (Seroto, 2011, p. 80). In this paper we discuss two specific rites: the Vhukomba puberty rites among the Vatsonga as discussed in Maluleke’s work, and the Thakaneng practice of Basotho as collected in ethnographic discussions with four women from the Piting Ha Tumo, a rural area in Lesotho.

The Vhukomba Maluleke and Troskie (2003, p. 48) studied the Vukhomba passage rites of teenagers as narrated by Vatsonga women in the Limpopo Province. Vukhomba refers to the traditional rite of passage for girls, which takes place among the Vatsonga/Machangana exclusively for a girl after the first menstruation. The family decides when they would want their child to go for the rite. Vukhomba happens any time after the first menses, for example, a week, months or even years later, depending on the family. It is a period of seclusion and this is referred to as being in the hut. The key feature of the practice is that it is a period of mentorship for the girl to be prepared for being a fully grown woman. According to Maluleke (2003) each girl has about three mentors during this period namely:

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• The mudzabi who is responsible for the entire needs of the girl and is a partner to the initiate; • the Murileri who is the person the girl confided in when she realised she was menstruating; • vukhomba elder who comes from the royal house to supervise the rite, and is usually the traditional leader’s wife, mother or sister The role of these mentors, according to Maluleke (2003), is to shape the initiate into womanhood in accordance with the expectations of the society, with an understanding that she has reached sexual maturity as well. The following are some of the sexual education content that Maluleke (2003) observed

• • • •

personal hygiene, maintaining virginity, self-control and social morals

Although avoidance of teenage pregnancy does not feature in this list, all of these topics and to a lesser extent than others, personal hygiene, subsume avoidance of unplanned pregnancy.

Thakaneng of Basotho Thakaneng is a place where girls that are deemed to be sexually mature sleep together in a home selected by the village chief. Such a home should have a woman of good social standing and good morals in the community. The girls commune there every night and according to the key informants, there were two reasons for this: • to subject the girls to informal education that prepares them to be women in all aspects of life • to remove them from their parents’ house so that they don’t get to hear or witness their parents’ sexual activities.

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This practice was reportedly a good platform that relieves parents of the burden to discuss sexuality with their children because that was somewhat of a taboo topic. While the education is the prerogative of the selected woman, she is able to informally enlist the assistance of other women of a good calibre to educate the girls. According to these key informants, the following are some of the topics that used to be covered: • Maintaining virginity • Self-control • Understanding themselves as ambassadors of their families and thus of the communities, and therefore an unwanted pregnancy will bring shame to all these. • Key considerations in choosing a man to marry, such as family background, economic strength etc. These practices have largely faded away with modernity, yet informants feel that it was very effective in controlling teenage pregnancy because girls were conscious of not embarrassing their educator, their peers and the society at large. The two practices were selected to represent many others in South African indigenous communities that have the same characteristics. Most of these practices are still held today and hold in them a wealth of information and platforms that have been time-tested for resilience. Although they may not be practicable in urban environments, a lot of methods can still be drawn from them.

Lessons to Be Drawn Adults taking an active role in education and mentorship. In both practices, selected adults take the responsibility of educating the younger generation. Previous sections have indicated that there is a wealth of experiential knowledge that is in the hands of the adults and that could benefit the younger generation. In particular, a community system that sees women with specific qualities being mentors would be a desired resource.

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Strengthened community systems. The two practices show the existence of established community systems which have been in practice for generations. There is a need to encourage and adapt such systems to combat teenage pregnancy. When such systems are established, they will enable a multi-sectoral approach to addressing the problem and the development of context specific interventions. Communal learning . The fact that the girls learn together as a subgroup means that they are given a platform that makes them accountable to each other. There is mutual learning from their peers, while they are also able to hold each other accountable. That strengthens the extent to which they apply the knowledge they learnt.

Conclusions An effective way of designing a communication strategy that would curb teenage pregnancy is to take into consideration factors that influence families, the environment of schools in the area, peers and partners from that community. It should also consider structural barriers influencing young women’s experiences, behaviours and how they think about their sexual and reproductive health as well as major contextual factors such as economic disruption and poverty, loss of family structure and cultural and societal norms governing the role expected of many young women, including the increased acceptability of intimate partner violence in the face of economic benefit. The neglect of social and structural predictors of teenage pregnancy has led to its continued persistence. It is thus implied that teenage pregnancy communication intervention design should include indigenous knowledge that emanates from the socio-cultural environment.

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Part VIII Religion and Health Communication

16 COVID-19, Religious Institutions and the Accommodation of Science Bankole Falade

Introduction The outbreak of a novel coronavirus was reported in Wuhan, China late in December 2019 and the World Health Organisation, WHO, issued a travel advisory for travellers travelling in or from Wuhan on 10 January 2020 (WHO, 2020a). The emerging infectious disease, SARS-CoV-2, rapidly spread in China and soon reached Europe, North America and the rest of the world. The first case in Africa was reported in Egypt on 14 February 2020. On 14 March 2020, the WHO declared the outbreak of the disease, now called COVID-19, a pandemic (WHO, 2020b), by then the death toll attributable to infections by the virus had surpassed 4000 worldwide. By April 2020, the African continent had recorded over 10,000 confirmed cases and 500 deaths due to the disease (WHO, 2020c). B. Falade (B) Stellenbosch University, Stellenbosch, South Africa e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_16

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The outbreak of the disease coincided with two important events in the Christian and Islamic calendars, Lent and Ramadan. The lent is a period of fasting and prayers in the Christian calendar which for the year 2020 began from Ash Wednesday on 26 February and ended around Palm Sunday, celebrated 5 April with Easter on 12 April. The holy month of Ramadan is also a period of fasting and prayers and began from about 23 April (depending on sighting of the moon) to about 23 May with Eid al Fitr, the feast of the breaking of the fast, held about 24th May 2020. The rapid spread of the novel coronavirus disease and lack of a cure meant the only option prescribed by scientists was the adoption of containment measures, keeping people apart at safe distances. This physical distancing rule was at variance with the communal practices of religion which included close contact in fellowship, shaking of hands and large gatherings for joint worship. Thus, when the disease spread across the world, most believers were under some of the physical distancing restrictions during the holiest period of their religious calendars. Most African countries adopted containment measures as the disease spread on the continent. South Africa enforced physical distancing and restriction of movement during the Christian’s Lent period from 26 March while Nigeria began few days later, 30 March and the measures continued into Ramadan. Communal prayers and meetings, which usually attract large gatherings daily and weekly, and during such religious festivals, were prohibited. The closure of the airspace to inbound and outbound traffic by many countries also meant pilgrimages to Mecca, Rome, Jerusalem, etc. at these times, were effectively barred. There was a church state rift over the closure in many countries and at the onset of the outbreak, some religious institutions defied social distancing rules. A Pastor in the United States who vowed to keep preaching contracted the disease and died (Vigdor, 2020) while some congregants at an international church conference in South Africa, attended by pastors from abroad who later tested positive for the virus, also became infected, including the local pastor (Shange, 2020). Many Catholics in Italy argued that church services should have been permitted along with activities such as food shopping and tensions increased when the government announced a gradual staged easing of the lockdown but did not include churches (Reuters, 2020). However, the picture of Pope

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Francis in a near-empty Saint Peter’s Square on Easter Sunday and the closure of Kabba, Islam’s holiest site during the Ramadan (Perring, 2020; Tondo, 2020) showed the impact of containing the disease on the two Abrahamic religions worldwide. The containment measures again brought to the fore the relationship between religion and public health (Chatters, 2000), religion, science and society (Catto & Kaden, 2019), debates about the cultural authority of science (Bauer et al., 2019), perceptions of the relationship between religion and science (Scheitle, 2011), epistemological claims as to a conflict (Evans & Evans, 2008) and the conflict narrative as it relates to African countries (Falade & Bauer, 2018; Falade & Guenther, 2020). The focus of this chapter is the impact of the COVID-19 containment measures on religious practices, particularly in Africa, the focus of this book, and how institutions, prominent actors and believers have adopted (and resisted) the authority of scientific interventions at critical periods in their religious calendars.

Africa Wide Reactions The Closure: Acceptance and Resistance Places of worship were closed in Kinshasa, in the Democratic Republic of Congo, for the first time in living memory. A priest attested to this but agreed it was in the interest of public health saying “Since we were born we can’t remember anything like this … But it is for our own good, for our health”. A high school student expressed similar sentiments, “it is quite shocking as Sunday is the day dedicated to Jesus …but we understand that it is for our own security” (AFP, 2020). A Muslim in Northern Nigeria said the outbreak had taken away the joy of Ramadan It’s a different kind of Ramadan entirely. With the coronavirus pandemic, the concept of Ramadan has changed … so many things. Before the outbreak, I used to go to the mosque and join the imam for prayers and learn more about the Holy Scriptures … you were surrounded by

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other faithful. Now I have to learn to pray with only my husband and children at home, which is quite abnormal. (Mugabi, 2020)

There were, however, pockets of resistance influenced by religious beliefs and denial. A churchgoer in Nigeria in late March said: “We want to pray, coronavirus is not here, it is the whites who brought it to us” (AFP, 2020). Her statement echoes widespread ideas the virus was imported to Africa. Another respondent said she would not miss the Sunday service for “anything in the world” and “God told me three days ago to spread the word that the spirit of coronavirus is dead. We will soon attend its funeral”. The claim was in spite of her complying with containment directives by holding a sanitiser and having had her temperature taken (AFP, 2020). Resistance was also influenced by the economic effects of the lockdown on wider society, in particular, there were food shortages during Ramadan. In Kenya, a resident said they lacked access to the big markets to shop for foodstuffs for her large family to break the fast. “As Muslims, we have been inconvenienced and now face many challenges”, she said (Mugabi, 2020). The pandemic also accelerated economic recession in Africa’s already beleaguered economies with attendant job losses and worsening of social divides (Agbakwuru, 2020; Muvunyi, 2020).

Beliefs About the Pandemic The President, Christian Association of Nigeria, Rev Samson Ayokunle, said the arrogance of humans against God was responsible for the COVID-19 pandemic (Ramon, 2020). Ayokunle reminded the public of how God used the blood of the lamb to protect His people in Goshen when the angels of destruction were killing the firstborn of the Egyptians. He said: People say anything today against God and against the word of God. The Holy Scriptures injunctions, which are God’s commands, no longer matter before us. We query the validity of the word of God and equally deliberately act against it. All practices that would make us worship God we reject or abandon under the guise of fundamental human rights.

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Prominent pastors also disagreed on how long it will take to contain the pandemic. Prophet T. B. Joshua of The Synagogue, Church of All Nations in Nigeria said during a church service that the pandemic will be over by 27 March 2020 (Adekanye, 2020) but this did not happen. The General Oversea of the Redeemed Christian Church of God, Pastor Adejare Adeboye, also in Nigeria was more circumspect, telling his congregation that it will be around for some time but also argued it was an act of God (Eyoboka, 2020a). He said: God told your papa … that the virus will be there until the whole world has had a compulsory holiday. Until he proves to the whole world that he is God. He wants to prove to the world that he is in charge. Some people don’t know how to slow down and God knows how to apply brakes. I want to assure you that tomorrow will be alright.

The Closure of Religious Places While state directive on the closure of worship places was largely complied with across Africa, there were pockets of resistance from religious leaders and worshippers at the beginning of the exercise and the pressure mounted on various governments following the relaxation of some of the containment measures. The closure led to an open crisis among prominent Nigerian religious leaders. Pentecostal preacher, Poju Oyemade said closure of the church should not stop the work of God (Olowolagba, 2020a). He said: The sick healed in the book of Acts were healed on the streets, in people’s homes, in public places and not within the four walls of a Church. Closing the doors of a physical building does not in any way mean the closure of the anointing of the Spirit from working … There is nowhere in Jesus’s ministry where the healing of the sick was preceded by a congregational service. In the Book of Acts, the sick were healed predominantly on the streets …

Another preacher, David Oyedepo of the Living Faith Church Worldwide (Winners Chapel), disagreed on the continued closure of places of

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worship even after local markets were asked to open for limited business (Olowolagba, 2020b). Oyedepo said: I can smell a rat behind the closure of Churches. The Lord spoke to me about it. It’s part of moves to stop the Church from spreading. How do you have the markets open and the Churches remain closed? Which one is more organized? The devil is surely targeting the people, but God’s words says I shall build my Church and the gates of hell shall not prevail … I declare that the world is free and the nations are liberated from continuous lockdown.

The partial opening of the markets was, however, supported by another pastor, Tunde Bakare of the Citadel Global Community Church as necessary to prevent hunger, especially in the lives of daily earners because the palliatives by the government did not go far enough, and not to undermine the church (Oyero, 2020). Bakare said: The inability of churches to congregate physically because of the present situation does not in any way mean the church cannot be effective this period. There is no distance in the spirit and the church is not the building but the saints of God. So, if we cannot congregate because of the lockdown, we can be very effective in our neighbourhood as our brothers’ keepers and at our various workplaces…

In Gambia, a Muslim cleric argued that the closure of mosques is bad for society. “The government should review the regulations on the situation of mosques. I believe mosques should be open with measures such as spacing and hand washing. Also in Nigeria, in May, after the easing of some restrictions, a resident in the capital Abuja, said the government should allow Muslims to congregate during Ramadan. “We’ve seen that when the lockdown was relaxed, people were allowed to return to their working places and markets. I don’t see any reason why mosques and churches should be closed because of COVID-19 (Mugabi, 2020). In Cameroun, some Muslims said the closure defies God’s teachings and as a sign of protest, they sat in front of mosques for 20 minutes. One of the protesters, a student said he went to the mosque to pray for Allah to rid the world of the disease (Kindzeka, 2020).

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This is a time people have to go to the mosque and pray ceaselessly. Anything out of that will not be tolerated by Allah, because this is a period where people are facing a lot of difficulties due to the outbreak of the pandemic COVID-19.

A service at a prominent church in Nigeria was attended despite the lockdown but members expressed worry about the virus and at the same time expressed faith in God (Ogundipe, 2020). Trusting God and scientists is common across Africa (Falade & Bauer, 2018; Falade & Guenther, 2020). One of the congregants said: … I was not too disappointed that he (Pastor) did not postpone. But everyone was visibly afraid throughout the service. The anointing that we received at church yesterday was very important to myself and other members. But I am not sure I will take the risk again next week.

The Internet and New Ways to Do Old Things Prior to the closure of places of worship, many churches already had television ministries and were active on the internet with accounts on Facebook and Twitter among others. Pastor Adeboye and Pastor Daniel Olukoya of the Mountain of Fire and Miracles Ministry each had about 1 million followers on Twitter in May 2020. Most religious institutions are now on web-based platforms, radio and television, thus the transition to using digital platforms solely was not too complicated. Muslim clerics in Nigeria also turned to social media platforms (Mugabi, 2020). Sheikh Huseyn Zakaria said: The essence is to protect the lives of our followers and also abide by the laws of the country — that we should as much as possible not come into close contact with one another. I think this is another blessing in disguise, about 300,000 people followed us, and this is very unimaginable.

Religious leaders have also come up with new ways to reach out to their congregations within the maximum number of persons allowed on the distancing rules. In Abidjan, Ivory Coast, evangelical preachers made

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tours of private houses where worshippers had been told to gather in groups of 20 or 30. Soap and sanitiser were waiting for visitors outside one home in the crowded district of Yopougon as some 20 people inside sat on plastic chairs one metre apart from each other (AFP, 2020). However, a Muslim scholar observed that some prayer routines and rituals cannot be done online. “There’s nothing like online Jumat, you can’t do that. You can’t ask people to form a row in their respective homes and follow you while you lead them in prayers. No, you can’t do that. The Jumat service has to be physical” (Obiezu, 2020).

The Church Helping Science As the containment measures took its toll on the economy, many religious institutions stepped in to assist the congregants. Many donated food items (see Ishola, 2020) and Pastor Bakare went further to release two church buildings and a private residence for use as isolation centres (Oyero, 2020). Both Pastors Adeboye and Oyedepo also donated medical supplies for the treatment of COVID-19 patients (Eyoboka, 2020b). This role was also taken up by various churches during the Ebola crisis in West Africa (Falade & Coultas, 2017). Religious institutions are, however, very active in teaching science and in Nigeria have established several faith-based universities following the liberalisation of licences. These faith-based universities include Redeemers University owned by the Redeemed Christian Church of God, Covenant University established by the Living Faith Church Worldwide/Winners Chapel, Babcock University by the Seventh-day Adventist Church, Crescent University owned by the Islamic Mission for Africa and Al-Hikmah University by the AbdulRaheem Oladimeji Islamic Foundation.

Religion and Health in History Tensions between the church and science over the origin and treatment of disease are almost as old as medical interventions in illnesses. Sin has

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been linked with mental illnesses (Kroll & Bachrach, 1984; Sheehan & Kroll, 1990) and some have sought treatment from religion (Ae-Ngibise et al., 2010). Some clergymen in Victorian England said children’s faces would turn into cow’s faces with horns when vaccinated for smallpox (Beck, 1960) and in the 1920s, influential religious groups in the United States such as the Christian Scientists founded by Mary Eddy argued that illness was a mental phenomenon that could be overcome through prayer (Colgrove, 2005). In the United States, there are religious exemptions from compulsory vaccinations in many states (LeFever, 2005; Sandstrom, 2019) and while such can be found in other countries and across religious groups, Pelˇci´c et al. (2016) ask if this is about religion or excuses for avoiding vaccinations. Falade (2019) provides a comprehensive historical review of vaccination controversies from about eighteenth century when clergy alleged vaccines transmit syphilis and variolation was a “mark of the beast” to present days when the Ebola virus was described as “an evil spirit” (see also Falade & Coultas, 2017).

Religion and Health in Africa Religious leaders in northern Nigeria opposed an ongoing national vaccination campaign against the polio virus which led to a revolt between 2003 and 2004 (Falade, 2014). Some imams had preached it was incompatible with Islamic injunctions. In Cameroon, girls ran away from schools to avoid vaccination teams, fearing the vaccines would sterilise them (Feldman-Savelsberg et al., 2000). The Cameroonian crisis was during a period of public disagreement between a pro-life Catholic group and the government over the Tetanus Toxoid vaccine. During the Ebola Virus Disease (EVD) crisis in West Africa which claimed over 10,000 lives, some pastors were laying hands on the ill to cure them of “spiritual attacks” (Falade & Coultas, 2017). More recently, during another outbreak of EVD in the Democratic Republic of Congo, a priest who travelled to the town of Butembo, one of the epicentres of the outbreak, to pray for those infected, contracted the disease and died (Wilson, 2019).

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Science and Religion: The Accommodation Psychology The relationship between science and religion in Nigerian and South Africa is not one of conflict but of “accommodation”, a coexistence of knowledge systems (Falade & Bauer, 2018; Falade & Guenther, 2020). Seeking remedies for health issues in Ghana has also been described as “healer shopping” as the public embrace biomedicine, ethno medicine and faith healing (Aikins, 2005). This coexistence of knowledge systems has also been shown to be true in other parts of the world. In Taiwan, the public embrace both science and paranormal beliefs (Li & Tsai, 2019) and in many health centres in Mexico, the image of the Virgin of Guadalupe hangs on the wall right next to a sexual health campaign advertisement bearing the slogan “wear a condom” (Priego Hernández, 2011). The accommodation hypothesis evolved from the work of renowned social psychologist Serge Moscovici (see Chapter 1 this volume). Moscovici sought to understand how a scientific phenomenon transforms a society’s behaviour, way of thinking and language by studying how different social groups of 1950s France, through the newspapers they controlled, responded to a new scientific idea, Sigmund Freud’s psychoanalysis (Moscovici, 1961/1976/2008). For the communistcontrolled press, the communication strategy was that of propaganda seeking to enforce a rejection by the group of psychoanalysis. The communists described psychoanalysis as an invasion of French culture and morals, a tool for political intervention and an ideological rearmament of American imperialism. The newspapers for the urban elite were interested in diffusion while the Catholic press adopted the strategy of propagation, urging spiritual advisers to work with psychoanalysts while the church adopts its findings (Moscovici, 1961/1976/2008). This “adoption” or “accommodation” approach by the Catholics, is true of the relationship between religious institutions and science and many religious publics who embrace multiple religious institutions and science (Jovchelovitch & Priego-Hernandez, 2015). Indeed while the ban on communal practices threatened religious institutions, practices like washing of hands are close to ablution

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currently practised by almost all faiths and observing cleanliness is entrenched in all religious scriptures in one form or the other. While ablution in faith is mainly about purification it’s the same process for maintaining good hygiene. The niqab, which is prohibited in some parts of Europe, is also a veil for the face that covers the mouth, nose and hair. Current face masks cover the nose and mouth and the nearness of ablution and niqab may be a factor in the ease of acceptance being modifications of established behavioural patterns (see diffusion in Chapter 1). The religious institutions also already had radio, television and internet-based platforms, making the transition much easier. The accommodation hypothesis falls within wider notions of health and disease proposed by critical psychologists (see Chapter 1 in this volume) which also include social, cultural and economic factors. The biomedical or clinical approach, researchers have shown, is not enough to explain behaviour as illness is experienced by an individual who is part of a society with distinctive cultural, religious and traditional practices, as well as economic constraints, which all combine to influence the perception of disease. Religious beliefs and traditional and clinical medical practices coexist in the treatment of mental health in Ghana (AeNgibise et al., 2010) and, despite the availability of antiretroviral drugs, HIV/AIDS patients in South Africa still patronise the traditional healers who provide affordable alternatives (Cook, 2009).

COVID-19 and Accommodation Psychology As the COVID-19 pandemic spreads and religious institutions were called upon to adopt behavioural changes, including the suspension of all gatherings, accommodation psychology provides plausible explanations for the ensuing relationship between science and religion as religious leaders adopted scientific findings even at very important periods of their calendars. The percentage of people who believe in God remains very high in Africa. In some countries, respondents to a World Values Survey rated God as high as 9, on average, on a 10-point scale of importance (Inglehart et al., 2014). A survey conducted in Nigeria shows that respondents

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have the same levels of trust in religious leaders and scientists, and when asked for their first and second options for health care, findings show they consult science, religion and traditional medicine, albeit in different orderings. The same survey shows that 82% of respondents who subscribed to the statement “Father’s gene decides sex of the child” also said “God decides sex of the child” (Falade & Bauer, 2018). “We treat, God heals” is a popular banner in many hospitals across Africa as science and belief occupy the same position in the minds of the public and each is called upon at the same time for the same purpose. Going to the hospital and praying for the sick is common across Africa (Falade & Guenther, 2020; Falade, & Bauer, 2018). Some of the prominent leaders of these institutions are also former scientists who went into the ministry. The leader of the Redeemed Christian Church of God, Pastor Adejare Adeboye, has a Ph.D. in Applied Mathematics and was a former professor at the University of Lagos, Nigeria. His counterpart in the Mountain of Fire and Miracles Ministry, Dr. Daniel Olukoya has a Ph.D. in Molecular Genetics. Religious gatherings are also not only for worship purposes only, but also for socialising (meeting friends and extended family), for impression management (belongingness) and business networking. The pulpit is often yielded for business talks and mentoring while advances in science and technology have enabled these institutions to reach more “lost souls” all over the world, in real-time.

Summary The accommodation hypothesis provides plausible explanations for the approach of religious institutions to scientific advice during the spread of COVID-19 which disrupted communal observations of major events in religious calendars, Ramadan and Lent. Rather than oppose scientific advice on how to contain the virus, religious institutions largely complied leaving cathedrals and Mosques empty during a time they see about the largest gatherings. Services were moved online, with very few people in the premises to record and transmit.

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Has COVID-19 made the church accept the supremacy of science over religion? Is “science and religion” a clash of ideas? The question of the origin of the disease remains contested as some religious leaders still claim disease is from God for “sinners” worldwide to “repent”. This was also the message during the Ebola crisis and for many other diseases and illnesses. Science and religion coexist in many parts of Africa. Few perceive conflict or supremacy. Religion remains a beacon, just as science is also a beacon, particularly for health and disease as the COVID-19 pandemic has again brought to light. COVID-19 and previous science and religion interactions have shown that beliefs can aid both the spread and containment of disease. But aiding the spread is short-term in nature, the occasional bungee jump into the abyss (Bauer et al., 2019, pp. 8– 10). Science always recovers its status as a beacon and becomes inscribed in common sense, alongside other systems of knowing.

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Mugabi, I. (2020). COVID-19 Restricts Africa’s Ramadan routine. Published May 8, 2020. Available from: https://p.dw.com/p/3bwZJ. Accessed May 15, 2020. Muvunyi, F. (2020). COVID-19: South Africa’s social divide and economic woes exposed . Published June 9, 2020. Available from: https://www.dw.com/ en/covid-19-south-africas-social-divide-and-economic-woes-exposed/a-537 39914. Accessed July 15, 2020. Obiezu, T. (2020). COVID-19 pandemic: Nigerian Muslims adapt to new Ramadan in age of coronavirus. Published April 23, 2020. Available from: https://www.voanews.com/covid-19-pandemic/nigerian-mus lims-adapt-new-ramadan-age-coronavirus. Accessed May 13, 2020. Ogundipe, S. (2020). Coronavirus: Oyedepo holds service, vows to keep winners chapel open. Published March 23, 2020. Available at https://www.premiu mtimesng.com/news/headlines/383340-coronavirus-oyedepo-holds-servicevows-to-keep-winners-chapel-open.html. Accessed May 13, 2020. Olowolagba, F. (2020a). Pastor Poju counters Oyedepo’s position on closure of churches over COVID-19. Published May 8, 2020. Available at https://dai lypost.ng/2020/05/08/pastor-poju-counters-oyedepos-position-on-closureof-churches-over-covid-19/. Accessed May 13, 2020. Olowolagba, F. (2020b). COVID-19: Oyedepo reveals what God told him about closure of churches. Published May 6, 2020. Available from: https://dailypost.ng/2020/05/06/covid-19-oyedepo-reveals-what-godtold-him-about-closure-of-churches/. Accessed May 13, 2020. Oyero, K. (2020). Bakare donates two church buildings as isolation centres. Published May 11, 2020. Available from: https://punchng.com/bakare-don ates-two-church-buildings-as-isolation-centres/. Accessed May 13, 2020. Pelˇci´c, G., Karaˇci´c, S., Mikirtichan, G. L., Kubar, O. I., Leavitt, F. J., Tai, M. C. T., & Tomaševi´c, L. (2016). Religious exception for vaccination or religious excuses for avoiding vaccination. Croatian Medical Journal, 57 (5), 516. Perring, R. (2020). Coronavirus: Historic moment as Kaaba CLOSED— Emergency deep-clean at Islam’s holy site. Express Newspaper Online. Available at https://www.express.co.uk/news/world/1251324/coronavirusnews-Kaaba-closed-mecca-Saudi-arabia-coronavirus-latest-updates-greatmosque. Accessed May 6, 2020. Priego Hernández, J. (2011). Sexual and reproductive health among indigenous Mexican adolescents: A socio-representational perspective. Doctoral dissertation, London School of Economics and Political Science.

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Part IX Conclusion

17 Is Science Enough? Health Communication and Health Enabling Environments Bankole Falade and Mercy Murire

Health Communication in Africa The book’s collection of essays has shown some of the enablers and constrains to healthy living in the cultures they are produced and our concluding chapter brings together recurring issues and approaches for better outcomes. We also introduce the success story of poliomyelitis in Africa to highlight the long bumpy road to the eradication of communicable diseases and the substantial amount of resources, local and international, often required.

B. Falade (B) Stellenbosch University, Stellenbosch, South Africa e-mail: [email protected] M. Murire Wits University, Johannesburg, South Africa © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6_17

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Stigma The South African population is increasingly ageing as life expectancy increases but as much as living longer is desired, it comes with difficulties for some who experience Alzheimer’s (Chapter 4), a neurodegenerative disease which results in brain damage. It first presents as mild cognitive impairment (MCI) which progresses to dementia. The authors highlight in detail current scientific understandings of the processes that lead to the two types of Alzheimer’s disease: the familial (fAD) with early onset symptoms appearing before 60 years of age and associated with genetically inherited mutations and the Sporadic (sAD) which accounts for 90% of all diagnosis, appearing after 65 years as the late onset and with causes linked to ageing and environmental factors. In South Africa, as in most parts of the continent, the elderly are often revered as custodians of culture with a direct link to the spiritual entities, thus when there is a change in their mental functions which makes them seem “abnormal” (Goffman, 2006, 2009), they are often assumed to have transformed to a spirit or been imbued with spiritual powers. Stigmatised as old witches, they become people to run away from instead of people to run to and care for, preventing them from accessing the needed care and posing problems for caregivers and integration into society. In Kenya, fat stigma (Chapter 7) is desired, in contrast to the western world where obese people are increasingly viewed as lazy or lacking selfcontrol (Brewis et al., 2017), although what may be termed healthy weight may be shifting in some cultures (Chen et al., 2018). Being fat in Kenya is a positive and desirable symbol for status, respect and wealth. This is also largely true in South Africa (Micklesfield et al., 2013) and many parts of the continent although genetic factors play critical roles. The occurrence of obesity is however increasing in Kenya and the enabling social and cultural factors need to be addressed to reduce the risks of the condition becoming a leading cause of death. Stigma prevents sex workers in Nigeria (Chapter 8) from accessing the needed medical care and protection from violence despite being at very high risk of contracting HIV. Internalisation of physical and sexual violence often gives rise to self-stigma unfortunately aided by police, clients and intimate partners. Issues with violence may involve the police

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at street level and intimate partners and often extends beyond physical violence, public shaming and sexual coercions to emotional and economic violations. Stigma has been linked to reduced access to healthcare services as sex workers are mistreated by doctors and nurses and often live in fear their work and drug habits will be exposed by the clinics. Pre-Exposure Prophylaxis (PrEP) was approved by the WHO for people who are HIV negative but at substantial risk of contracting the disease (Chapter 5). It has been adopted at national levels in many countries for at risk populations and in Zimbabwe and South Africa it has been prioritised for female and male sex workers, men at risk, sero-discordant couples, pregnant women in relationships with men of unknown status, adolescent girls and young women and transgender people. Its use however faces the same constraints as HIV positive persons, stigma. Health providers question its need preaching abstinence and faithfulness to partners and offer alternative solutions to sex work. Female sex workers who seek PrEP are given stigmatising labels such as home wreckers, promiscuous, ladies of the night and prostitutes but these are soon internalised by the sex workers who take ownership of the labels in a rebellious way. Using the socioecological model, the chapter examines the role of the Apostolic church in Zimbabwe, families, communities, service delivery and enabling environment in health seeking behaviours, in particular the use of PrEP. In South Africa the roots of HIV/AIDS stigma run deep, aided in the early days of disease spread by denial and stereotypes held about the disease condition and people living positively (Chapter 6). There was also the hypothesised link with the political struggles of the apartheid era and Cold War politics. There were conspiracy theories about the use of condoms being part of the plan by the apartheid government, aided by the American secret service, to reduce the birth rate of the black people of South Africa for political ends. HIV was also associated with sin, witchcraft, use of illicit drugs, homosexuality and promiscuity. The result was a culture of silence induced stigma and denigration of the science of HIV which may have contributed to the acceleration of its spread in the population.

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Summary These chapters have shown that stigma can originate from poor knowledge of the science of disease in our communities, social and cultural values, religious and traditional beliefs as well as conspiracy theories about the origin of illness. Stigma encourages a culture of silence and prevents the stigmatised from adopting health seeking behaviours and society from extending the needed care both in our communities and in health care institutions. Stigma thus remains a barrier to the uptake of health communication. The chapters highlighted the need for health communication as well as health enabling socio cultural and economic environments. Sex workers for example need education as well as policy changes that will provide safe spaces and the public needs better education to disassociate Alzheimer’s from witchcraft.

Beliefs and Traditions Mental health issues are largely misunderstood in many parts of Africa. In Nigeria, despite the existence of psychiatric hospitals and other medical institutions, illegal and poorly run mental health rehabilitation centres have existed for decades (BBC, 2019; DW, 2019; HRW, 2019). Some mental health conditions are believed to be caused by evil spirits to be exorcised by superior powers and deliverance from the so-called power of darkness is offered by Pastors, Imams and African traditional healers. Culture, beliefs, stigma and lack of financial resources to access western health institutions often compel families to banish abnormal wards to these “free” institutions. Chapter 11 examines the context of mental health treatment in Morocco and how social dynamics, norms, religious and health-related beliefs and attitudes may influence care and the shortcomings of a universal mental health care programme. Current psychiatric practices in Morocco are strongly rooted in Western medicine which views mental health as a medical condition amenable to medical intervention in a culture where traditional customs and beliefs are strongly held by the majority. Moroccans, the chapter argues, are currently faced with two

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frameworks for mental health care: the secular and the religious, with the population accessing both systems, seeking care from doctors and faith healers (marabouts) complementarily. The chapter calls for communitybased mental health intervention programmes which incorporate local realities and their impact on health access. Cultural practices in multilingual Malawi (Chapter 9) present a dilemma to health professionals who are largely male and trained in English: which language to use in gynaecological consultations when discussions about female bodies are considered taboo. Given the discomfort this may cause between the male doctor and his female patient, the chapter examines the conditions that may encourage the use of English or Chichewa, the local language in consultations. Author argues that Chichewa, as the default language, offers some power symmetry but borrowing words from English was inevitable as it lacks some of the medical terminologies. Patients may also use English as a tool to escape the social-cultural burden of linguistic taboo, thus switching, whenever there is an anticipated linguistic taboo, becomes a face-saving strategy. Doctors therefore need to be more culturally aware and understand the use of language in context as not to make the patients uncomfortable. Chapter 10 examines the perceptions of preeclampsia and eclampsia among traditional birth attendants (TBAs) in Kano, Nigeria arguing that lack of adequate knowledge about the condition increases the risks posed to pregnant women in a country with comparatively high maternal mortality ratio. The TBAs are more accessible in the rural communities and have been used for generations but they still hold on to age old beliefs about the origin of disease symptoms in pregnancy. Swollen feet are seen as normal and when in excess, attributed to twins. Pregnancy and safe delivery are perceived as divine experiences which may be thwarted by evil spirits. Maternal mortality is then the wish of God. Given the popularity of TBAs and poor access to clinical care, science education is needed to change age old magic or naïve perception (see Freire, 1974) of the disease condition. Science communication about potential health hazards is also the focus of Chapter 12 which examines mental health and selfitis, a condition in the cross hairs of psychologists and medical practitioners some of whom have branded it a mental condition while others disagree. Selfies

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have become a new channel for self-representation through various social media platforms aided by advances in technology and the mobile phone. In a study of Nigerian undergraduates, the chapter finds that although obsessive selfie taking can be said to originate from low self-esteem, it is therapeutic for some participants who claim it reduces stress, promotes self-confidence and creates healthy competition with friends. The chapter reinforces studies that expert perception of risks may differ from the public (Star, 1969; Slovic et al., 2004): with selfitis, where some experts see risks, the users see benefits. Chapter 16 examines how religious institutions and the public responded to the outbreak of a novel coronavirus which halted religious gatherings and all forms of communal worship during the most important events in the calendars of the Abrahamic faiths, Lent and Ramadan. The pandemic caused a rift between the church and state and at the onset of the outbreak, there were pockets of resistance across Africa as some religious leaders and followers disregarded social distancing rules introduced to contain the disease. However, religious institutions largely accommodated (Moscovici, 2008) scientific advice as communal gatherings were halted. Some of the religious institutions also became sources of economic reliefs to cushion the effects of the containment measures (Ishola, 2020) while others donated equipment (Eyoboka, 2020) and premises (Oyero, 2020) for the treatment of those ill with the virus.

Summary Culture, religious and traditional beliefs play strong roles in health seeking behaviours and while they can be a barrier, they can also be used to facilitate access to clinical care. The double edge nature presents opportunities to harness resources from the two: the scientific and the traditional, in cultures where traditional views are strongly held and protected and in communities where traditional practices may be the only form of health care available or accessible. As Moscovici argues in the theory of social representation, in the coexistence of science and beliefs, one knowledge system moves up, the other moves down. Accommodation of science by traditions and beliefs takes us to the next section,

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complementary use of western and traditional approaches to social and public communication.

Rethinking Approaches to Health Communication Chapter 13 uses interactive radio programmes to drive social and behavioural change among adolescent girls in Kenya. The interactive nature transformed the radio to a forum for public engagement: to inform, elicit information and reach common understanding for social change. In Kenya, compared with boys, girls are more likely to drop out of school with pregnancy and related stigma and the programmes focussed on vulnerability to HIV infection, HIV and stigma and adolescent pregnancy. The media intervention in local languages used vignettes earlier developed during informal discussions. Participants responded to the vignettes through phone in and SMS. Findings showed vulnerability to HIV were influenced by money, sex and lifestyle issues and while majority of participants were of the opinion a pregnant adolescent should be allowed to return to school, it was often conditional. Reducing teenage pregnancy was also the focus of Chapter 15 which calls for the use of neglected African cultural practices. The focus was the role of initiation rites as a forum for educating young girls about their bodies and adulthood and bringing them together for shared experiences. The Vhukomba is a traditional rite of passage for teenagers in the Limpopo province of South Africa, a period devoted to preparing the teenager for adulthood. During the rites, girls of about the same age are kept together in a hut with about three mentors who are elderly women of repute in the community charged with shaping the initiate into womanhood. Another example is the Thakaneng practice of the Basotho, in Lesotho. Thakaneng is a place where girls deemed to be sexually mature sleep together in a home selected by the village chief with an elderly woman of good social standing and morals as mentor. The programme also brings girls from different parts of the community together for informal education relieving the parents the burden of discussing sexuality with their children which is often seen as a taboo.

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These practices have largely faded away with modernity, yet may have been effective in controlling teenage pregnancy. How can these traditional practices be transformed to an effective communication tool in modern South Africa? How can traditional forms of communication complement western models? Complementing Western models of communication with African practices was also the focus of Chapter 14. The author argues that the campaign to reduce malaria infections in Nigeria, particularly in the rural areas where there is less access to radio, television and the internet, can benefit from traditional communication practices which have existed for generations and are still in use across the country. The chapter also argues that the public in the rural areas may have more trust in their own systems of communication compared with radio and television, largely owned by the government of the day and with attendant credibility and trust issues. African communication is rooted in poetry, music, dance (see the Sinikithemba Group in Chapter 6), masquerades and town criers and their continued existence is testament to their popularity. The chapter argues that these resources, well established and with trust enabling systems can be harnessed for the communication of malaria prevention strategies.

Summary Turning the radio, an affordable and popular medium in rural African communities, to an interactive forum on teenage pregnancy and HIV and the use of hypothetical characters allowed the researchers to have a wider reach in the communities and the participants to more freely discuss the issues without fear of stigmatisation which would have resulted from relaying personal experiences. Communicating not just in local language but also using African cultural practices also holds promise for tackling teenage pregnancy. Initiation settings can complement formal education systems, being “classrooms” themselves where the mentor is the “teacher”. Going back to African roots also holds promise in the fight against malaria in rural communities, complementing western practices of open messages with informal routes

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through respected elders council, market women groups, music festivals, storytelling etc. Africa communication approaches can also drive awareness about mental health and the causes of Alzheimer’s, the dangers of obesity, preeclampsia and eclampsia and other communicable and non-communicable diseases on the continent.

Global Health: Eradicating Polio in Africa On 25th August 2020, the WHO Africa region was declared free of the Wild Polio Virus (WHO, 2020), about 24 years after it commenced the “Kick Polio Out of Africa” campaign. The Africa campaign, launched by African Heads of State in 1996, was in response to a worldwide initiative, the Global Polio Eradication Initiative (GPEI) launched in 1988 after the 41st World Health Assembly (WHA) passed a resolution to eradicate poliomyelitis1 by the year 2000 (CDC, 2020; GPEI, 2020a; WHO, 2020). The GPEI campaign followed the 1979 certification of the eradication of small pox2 achieved through the use of vaccines3 about 26 years after it was first proposed to the WHA (Baicus, 2012; Barrett, 2007; Sabin & Boulger, 1973; Stern & Merkel, 2005). Although the global target of year 2000 was not met, polio cases fell by 99% annually (Modlin, 2010). When the African campaign was launched in Africa in 1996, polio was spreading in 21 countries but by 2002, most countries, including several states in Southern Nigeria were declared free of the disease. The year 2002 was however the beginning of a vaccination revolt in northern 1 Poliomyelitis is caused by a human enterovirus called the polio virus which penetrates the central nervous system of children under five and may destroy nerve cells which activate skeletal muscles, leading to a condition called acute flaccid paralysis. There are three serotypes of wild poliovirus type 1, type 2 and type 3 and immunity to one serotype does not give confer immunity to the other two. 2 WHO’s first Director General, Brock Chisholm in 1953 proposed to the World Health Assembly (WHA) a global approach to the eradication of smallpox. 3 Edward Jenner conducted the first vaccination for small pox in 1796 as an alternative to variolation which had been in practice since the 1600s. The formalin-inactivated vaccine polio vaccine (IPV) was developed by Jonas Salk in 1953 and adopted throughout the United States in 1955 while the live-attenuated polio vaccine (OPV) was developed by Albert Sabin in 1956 and licenced between 1961 and 1963 in the United States.

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Nigeria sparked by religious resistance, rumours the vials were deliberately contaminated with HIV and sterilising substances and conspiracy theories about the motives of the Western origins of the vaccines and vaccination campaigns. The period coincided with the ongoing wars in Iraq and Afghanistan with negative consequences for domestic perceptions of the funding agencies. The multi-million dollar Nigerian campaign also faced funding shortfalls and other logistical obstacles (Falade, 2014). With no Wild Polio Virus (WPV) detected in Nigeria since 2016, the country achieved polio free status 32 years after the global campaign commenced. Similar progress in Cameroun, Central Africa Republic and South Sudan paved the way for the continent to be declared wild polio virus free making it the fifth of the six WHO regions to be declared free of wild polio. However, outbreaks and scale of circulating vaccinederived polio (CVDP) remains a regional problem. 16 countries in the region are currently experiencing CVDPV outbreaks, which can occur in under-immunised communities (WHO, 2020). CVDP are excreted vaccine-derived polioviruses which through mutation reacquire neuro virulence (GPEI, 2020b, 2020c). With no WPV detected anywhere in the African Region since 2016, the achievement is very significant given that in 1996 when African leaders launched the Kick Polio Out of Africa campaign, the wild poliovirus paralysed more than 75,000 children every year all over the continent (GPEI, 2020b). The cost of the worldwide campaign has been huge, borne by individual states and donor agencies. In addition to contributions by national governments to their own polio eradication efforts, 100 public and private donors have given to the global programme an estimated $17,327 million, an indication of the scale of financial resources required to eradicate a debilitating childhood disease (GPEI, 2020d).

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Conclusion: Global Health, Communities and Health Enabling Environments How do societies move from problematisation, the demythicisation of common sense to solutions, from magic or naïve reality to critical consciousness (Crotty, 1998; Foucault1984; Freire, 1974)? How can African communities move from disease conditions to their eradication? Is science communication enough for healthy behavioural outcomes in Africa communities? Scientific knowledge needs to move from the laboratories and minds of scientists to the public sphere quare but communication does not guarantee an immediate adoption of health enabling information and desired behavioural change. Communication can be accepted if certain conditions are fulfilled (Habermas, 2015) but this is not a one way option as it can also face rejection (Luhmann, 1986) and Moscovici (2008) adds a third option of accommodation. Thus, when a message is communicated in the public sphere, it can archive its aims (desired behavioural change), be rejected (no change) or the public accommodate it (coexistence) into existing knowledge systems, into common sense. Overcoming rejection (non-uptake) is an essential component of health communication as this book has shown. Among the plausible reasons for the failure of communication are stigma, religious and African beliefs about health and illness, social norms and traditions as well as policy environments. There are also issues of social identity, empowerment, social capital and power. The effectiveness of health communication is dependent on how well it can overcome these obstacles but the authors have also shown that some of these constrains can be transformed to tools that may enable the adoption of healthy behaviour. The book has also shown the important role of affordability, the overriding impact of poverty, even when the individual is aware of health enabling options. This has given rise to calls by critical health psychologists (see Campbell, 2014, 2020) and social movements around the world for health enabling contexts in marginalised settings. The drive to eradicate small pox worldwide took 26 years (1953– 1979) from when it was first proposed to the WHA by the WHO’s first Director General, Brock Chisholm. It took Africa 32 years to be declared

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Wild Polio Virus free from when the campaign was started by the WHO in 1988 and 24 years after it commenced the “Kick Polio Out of Africa” campaign in 1996. The major lesson of the long drawn out war against incapacitating but preventable infections is that the existence of scientific knowledge and its communication to the public may not be sufficient to eradicate diseases. The bumpy road (Modlin, 2010) to eradication requires the acknowledgement of health enabling and disabling contexts in communities and the resources: financial, political, social, cultural and individual, required to overcome these challenges. A major resurgence of measles in the United States, the Philippines, Ukraine, Venezuela, Brazil, Italy, France, and Japan (Atkinson et al., 1992; Benecke & DeYoung, 2019; Paules et al., 2019; Phadke et al., 2016; Sarkar et al., 2019); the spread of the Ebola virus disease first found near the Ebola river in the Democratic Republic of Congo in East Africa to West Africa and then to Europe and the United States; the spread of the Zika virus from the Zika forest in Uganda to the Americas and now the severe acute respiratory syndrome coronavirus (SAR-CoV2) around the world, have all shown that in the age of globalisation and international travels, a communicable disease seen to be quite remote from our presence can in a matter of months become our problem. Thus, no country is disease free until all countries are free. Global approaches to health present better chances of lasting success but we need to recognise that it is not a one size fits all as community level differences in culture, beliefs and traditions may inhibit or delay the adoption of healthy behavioural practices. The financial requirements are also enormous and conversations need to be intensified on how to share the burden between governments, non-governmental organisations, private donors and drug companies.

References Atkinson, W. L., Orenstein, W. A., & Krugman, S. (1992). The resurgence of measles in the United States, 1989–1990. Annual Review of Medicine, 43(1), 451–463.

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Baicus, A. (2012). History of polio vaccination. World Journal of Virology, 1(4), 108. Barrett, S. (2007). The smallpox eradication game. Public Choice, 130 (1–2), 179–207. BBC. (2019). Nigerian police free 259 from illegal detention in mosque. Available at https://www.bbc.com/news/world-africa-50308604. Accessed June 28, 2020. Benecke, O., & DeYoung, S. E. (2019). Anti-vaccine decision-making and measles resurgence in the United States. Global Pediatric Health, 6 , 2333794X19862949. Brewis, A., Trainer, S., Han, S., & Wutich, A. (2017). Publically misfitting: Extreme weight and the everyday production and reinforcement of felt stigma. Medical Anthropology Quarterly, 31(2), 257–276. Campbell, C. (2014). Community mobilisation in the 21st century: Updating our theory of social change? Journal of Health Psychology, 19 (1), 46–59. Campbell, C. (2020). Social capital, social movements and global public health: Fighting for health-enabling contexts in marginalised settings. In Social Science & Medicine, 112153. CDC. (2020). Poliomyelitis. Available at https://www.cdc.gov/vaccines/pubs/ pinkbook/polio.html. Accessed June 26, 2020. Chen, I., Ng, H. F., Chua, L. R., Loo, M. Y., Wong, P. K., & Chow, K. T. (2018). A qualitative study of obesity perceptions in social media through Twitter’s tweets. International Journal of Management, Economics and Social Sciences (IJMESS), 7 (Special Issue), 40–57. Crotty, M. J. (1998). Describing Freire. In Foundations of social research: Meaning and perspective in the research process (pp. 155–156). Sage. DW. (2019). Nigeria: Police free chained, abused children from Islamic school . Available at https://www.dw.com/en/nigeria-police-free-chained-abused-chi ldren-from-islamic-school/a-50605407. Accessed June 28, 2020. Eyoboka, S. (2020). COVID-19: Adeboye, Oyedepo donate medical supplies to Lagos, Ogun. Published April 1, 2020. Available at https://www.vangua rdngr.com/2020/04/covid-19-adeboye-oyedepo-donate-medical-supplies-tolagos-ogun/. Accessed May 15, 2020. Falade, B. A. (2014). Vaccination resistance, religion and attitudes to science in Nigeria. PhD thesis London School of Economics and Political Science. Available at http://etheses.lse.ac.uk/911/. Foucault, M. (1984). Polemics, politics and problematizations, based on an interview conducted by Paul Rabinow. In L. Davis. (Trans.), Essential works of Foucault (Vol. 1), Ethics. New York: New Press.

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Freire, P. (1974). Conscientisation. CrossCurrents, 24 (1), 23–31. Goffman, E. (2006). Selections from stigma. Chapter 10 in Davis, L. J. (eds). The Disability Studies Reader. Routledge. London, New York. Goffman, E. (1963/2009). Stigma: Notes on the management of spoiled identity. Simon and Schuster. GPEI. (2020a). Our mission. Available at http://polioeradication.org/who-weare/our-mission/. Accessed June 26, 2020. GPEI. (2020b). Nigeria: Status: Affected by circulating vaccine-derived poliovirus type 2. Available at http://polioeradication.org/where-we-work/nigeria/. Accessed June 26, 2020. GPEI. (2020c). Circulating vaccine-derived poliovirus. Available at http://polioe radication.org/polio-today/polio-now/this-week/circulating-vaccine-derivedpoliovirus/. Accessed June 26, 2020. GPEI. (2020d). Historical contributions, 1985–2019. Available at http://polioe radication.org/financing/donors/historical-contributions/. Accessed June 26, 2020. Habermas, J. (2015). The theory of communicative action: Lifeworld and systems, a critique of functionalist reason (Vol. 2). John Wiley & Sons. HRW. (2019). Nigeria: People with mental health conditions chained, abused . Available at https://www.hrw.org/news/2019/11/11/nigeria-people-mentalhealth-conditions-chained-abused. Accessed June 28, 2020. Ishola, Y. (2020). COVID-19: Kwara Monarch lauds Oyedepo, others over relief package. Published May 5, 2020. Available at https://nnn.com.ng/covid-19kwara-monarch-lauds-oyedepo-others-over-relief-package/. Accessed May 13, 2020. Luhmann, N. (1986). The autopoiesis of social systems. Sociocybernetic Paradoxes, 6 (2), 172–192. Micklesfield, L. K., Lambert, E. V., Hume, D. J., Chantler, S., Pienaar, P. R., Dickie, K., & Puoane, T. (2013). Socio-cultural, environmental and behavioural determinants of obesity in black South African women. Cardiovascular Journal of Africa, 24 (9), 369. Modlin, J. F. (2010). The bumpy road to polio eradication. New England Journal of Medicine, 362(25), 2346–2349. https://doi.org/10.1056/NEJ Mp1005405 Moscovici, S. (2008). Psychoanalysis: Its image and its public. Polity. Oyero, K. (2020). Bakare donates two church buildings as isolation centres. Published May 11, 2020. Available at https://punchng.com/bakare-donatestwo-church-buildings-as-isolation-centres/. Accessed May 13, 2020.

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Paules, C. I., Marston, H. D., & Fauci, A. S. (2019). Measles in 2019—Going backward. New England Journal of Medicine, 380 (23), 2185–2187. Phadke, V. K., Bednarczyk, R. A., Salmon, D. A., & Omer, S. B. (2016). Association between vaccine refusal and vaccine-preventable diseases in the United States: A review of measles and pertussis. JAMA, 315 (11), 1149– 1158. Sabin, A. B., & Boulger, L. R. (1973). History of Sabin attenuated poliovirus oral live vaccine strains. Journal of Biological Standardization, 1(2), 115–118. Sarkar, S., Zlojutro, A., Khan, K., & Gardner, L. (2019). Measles resurgence in the USA: How international travel compounds vaccine resistance. The Lancet Infectious Diseases, 19 (7), 684–686. Slovic, P., Finucane, M. L., Peters, E., & MacGregor, D. G. (2004). Risk as analysis and risk as feelings: Some thoughts about affect, reason, risk and rationality. Risk Analysis, 24 (2), 311–322. Starr, C. (1969). Social benefit versus technological risk. Science, 1232–1238. Stern, A. M., & Markel, H. (2005). The history of vaccines and immunization: Familiar patterns, new challenges. Health Affairs, 24 (3), 611–621. WHO. (2020). Africa eradicates wild poliovirus. Available at https://www.afro. who.int/news/africa-eradicates-wild-poliovirus. Accessed August 25, 2020.

Index

A

abortion 232, 236 Abrahamic faiths 374 abstinence 104, 145, 371 acceptable behaviour 293 accepted 25, 26, 39, 82, 175, 242, 290–292, 296, 297, 300, 325, 335, 379 accessibility 13, 85, 87, 249, 254 access to information 298 accommodate 9, 39, 51, 53, 374, 379 accommodation 11, 27, 28, 187, 194, 358–360, 379 accommodation of science 12, 374 accommodation psychology 358, 359 Acquired Immunity Deficency Syndrome (AIDS) vi, 3, 5, 8–10, 14, 22, 30, 36,

47, 53–55, 102, 103, 105, 121–135, 137–139, 142–153, 162, 171, 175, 210, 232, 236, 290, 296, 297, 299, 309, 337, 359 adolescent(s) 10, 22, 274, 335–337, 339, 375 adolescent girls 14, 290, 296, 298, 300, 301, 304, 305, 309, 310, 371, 375 adolescent pregnancy 334, 336, 375 affect 10, 29, 73, 84, 85, 226, 309, 322, 323, 336 affective needs 277 Affirmation 144 African cultural practices 375, 376 African traditional healers 372 age vi, 9, 10, 12, 64–66, 74, 81, 83, 85, 88, 103, 162, 185, 217, 232, 236, 244, 251, 275, 277,

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 B. Falade and M. Murire (eds.), Health Communication and Disease in Africa, https://doi.org/10.1007/978-981-16-2546-6

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Index

296, 297, 334, 370, 373, 375, 380 age grades 316, 322, 327 agenda setting 36, 37 aging 10, 64, 68, 70–72, 74, 75, 81, 84, 89, 370 AIDS afflicted 103 AIDS sufferer 101 alcohol consumption 88 Alzheimer’s disease (AD) vi, 5, 8, 9, 63–68, 70–75, 78–90, 370, 372, 377 America secret service 371 amulets 254 amyloid β aggregation 66 amyloid beta (Aβ) 10, 67–70, 72, 73, 75, 77–83 amyloidogenic 68 amyloid precursor protein (APP) 67–69, 72, 73, 75, 77–79, 81 anaemia 232, 334 analytical 11, 29 ancestors 109 anesthetic 232 antenatal 233, 235, 236, 244 anti-depressants 260 antiretroviral(s) 123, 135, 137, 143, 147, 148, 359 antiretroviral therapy (ARV) 102, 134, 136, 137 anxiety 38, 88, 89, 182, 197, 249 apartheid 121, 122, 149, 371 apostolic 111, 116, 371 apostolic sect 108–110, 112, 113, 115, 116 Arab 251, 255, 258, 262 Aristotle 26, 27 asylums 252

attitudes 9, 12, 13, 23, 24, 30, 32, 33, 36, 37, 48, 49, 55, 66, 84–87, 105, 115, 123–125, 131, 143, 148, 163, 175, 177, 195, 235, 236, 250, 256, 257, 259, 264, 289–292, 294, 321, 328, 335, 336, 372 Austin, John, L. 9, 24, 25 authority of science 351 autonomy 255–257, 259, 262–264 autophagic flux 75 autophagosome 74, 77–79 autophagy 66, 74–79 autophagy dysfunction 74, 75

B

banking concept 50 barriers 32, 102, 114–117, 182, 197, 198, 235, 237, 243, 251, 254, 290, 291, 297, 299, 301, 308, 342, 372, 374 behavioral change vi, 23, 35, 49, 83, 292, 293, 295, 328, 335, 359, 375, 379 behavior(s) vii, 5, 8, 9, 11, 15, 26, 29, 31–33, 37, 48–50, 55, 79, 81, 83, 86, 89, 105, 106, 160, 164, 166, 176, 182, 196, 235, 237, 238, 243, 244, 251, 252, 257, 258, 263, 271, 275–277, 281–283, 289–296, 300, 304, 305, 309, 324–326, 335, 342, 358, 359, 371, 372, 374, 380 behavioural outcomes 33, 379 behavioural risk factor 159 beliefs vii, 6, 8, 12, 13, 22, 29, 31, 33, 35, 37, 106, 109–112, 115, 116, 164, 168, 233–240,

Index

242–244, 250–253, 255–260, 263, 264, 289, 291, 293–296, 300, 301, 304, 308, 309, 318, 319, 321, 324, 360, 361, 372–374, 379, 380 believers 12, 350, 351 Berger, P.L. 7 biological 262, 304, 338 biomedical 31, 124–126, 234, 243, 309, 359 biopsychosocial 31 birth asphyxia 5 birth attendants 13, 234 birth trauma 5 black people 121, 371 blood pressure 160, 173, 220, 233 Body Mass Index (BMI) 160, 162 Bourdieu, Pierre 48, 53, 54 Braak staging 82 breast cancers 209

C

cancers 33, 36, 64, 148, 160, 218–220 cardiovascular disease 160 care v, 9, 10, 13, 48, 55, 84, 87, 103, 105, 109, 130, 131, 138, 141, 144, 146, 148, 153, 163, 186–188, 197, 208, 209, 233, 235, 242, 249, 250, 252, 255, 256, 261, 263, 370, 372–374 caregiver(s) 84, 87–89, 236, 337, 370 Catholics 11, 27, 350, 357, 358 CD4 count 132 central Asia 4 central route 291 cervical cancers 209

387

channel 6, 28, 35, 36, 73, 300, 317, 319, 327, 374 channel effects 23, 35, 36 Chichewa 12, 210, 212, 213, 215–227, 373 childbirth 232, 233, 235, 242, 258 choir 128–132, 134–139, 141, 143–147, 150, 152 cholesterol 160 Christian 12, 126, 150, 238, 321, 350 chronic disease 160, 217 church doctrine 109, 113 church(es) 10, 11, 27, 53, 102, 108–110, 113, 116, 126, 127, 151, 350, 353–356, 358, 361, 371, 374 church groups 49, 107, 116 clients 4, 112, 176, 182, 186–191, 193, 197, 198, 236, 370 client violence 188, 189, 193, 197 clinic 112, 113, 116, 127, 129–135, 138, 142, 147, 194, 209, 236 clinical gaze 209 code mixing 219, 221, 226 code switching 212, 213, 219, 222–224, 226 cognitive decline 66, 81–83, 85 cognitive deficit model 30 cognitive heuristics 291 cognitive impairment 9, 81, 82 cognitive needs 277 Cold War 121, 371 collaboration 143, 144, 256 collective behaviors 23 collective beliefs 14, 290, 294, 301 collective change 290, 293 collective decisions 49 collective identities 49, 151

388

Index

collectivism 257 collectivistic values 255 common sense vi, 6–9, 11, 22, 27, 37, 361, 379 communal learning 342 communal practices 12, 350, 358 communicable diseases 4–6, 8, 11, 14, 161, 163, 369, 377, 380 communication v–vii, 5, 8, 10, 14, 23, 25, 26, 28–30, 32, 35, 36, 38, 104, 150, 209, 226, 256, 276, 282, 290, 294, 316, 318–328, 334–336, 375, 376, 379, 380 communication channels 14, 35, 177, 292, 316 communication for development 290 communication intervention 14, 335, 337, 338, 342 communication strategies v, vii, 14, 316, 322, 323, 325, 328, 342, 358 communication system 26, 38, 318, 321, 324 communicative action 25, 27 communist(s) 27, 358 community-based 251, 261, 263 community development 9 community health vi, 39, 49, 55, 293 community health psychology 34 community(ies) v, vii, 6, 8–11, 13, 14, 31, 34, 39, 47–49, 52, 54, 55, 66, 84–87, 89, 102, 107, 110, 113–116, 126, 128, 132, 139, 146, 163, 164, 166, 169–171, 173, 174, 177, 178, 222, 233, 235, 236, 238,

243, 255, 257, 258, 261–264, 292–294, 297, 299–305, 308–310, 318–320, 322, 323, 325–327, 334–338, 340–342, 371–376, 378–380 community involvement 251 community level determinants 9 community participation 9, 47, 48, 54 community perceptions 234, 235, 242 community practices 163, 212 community radio vii, 300 community wealth 232 conceptual approaches 8, 9, 23 condom negotiation 182, 196 condoms 22, 24, 29, 104, 108, 121, 145, 188, 194, 197, 371 conflict narrative 351 Conscientisation 51 conspiracy theory(ies) 37, 38, 122, 371, 372, 378 constitutional monarchy 250 constrains 9, 182, 184, 196, 198, 199, 369, 379 contemporary knowledge 14, 333 context vii, viii, 5, 6, 8, 11, 25, 31, 34–36, 39, 48, 51, 52, 54, 66, 85–87, 89, 128, 140, 144, 145, 149, 181, 183, 185, 196, 211, 238, 254–257, 259, 261, 263, 281, 290, 292, 296, 299, 334, 337, 338, 342, 372, 373, 380 contraception 110 contraceptives 29, 111, 232, 336 core ideas 295 coronavirus 12, 349–352, 374, 380 counselling 132, 177, 209, 308, 336

Index

counter-narrative 128 COVID-19 6, 12, 38, 351, 356, 360, 361 criminalization 182 critical action 51 critical consciousness 6, 7, 9, 47, 49–51, 53, 55, 379 critical health communication 5 critical health psychology 31 critical psychology 31 critical thinking 7, 55 critical thought 51, 338 critical transitivity 7, 51 cue to action 32, 235, 238 cultivation analysis 37 cultural acceptability 251, 252 cultural beliefs vi, 109, 115 cultural diversity 128, 250, 251 cultural experiences 23 cultural factors 177, 250, 252, 304, 370 culturally blind 251 culturally sensitive 335 culturally unacceptable 255, 256 cultural norms 39, 161, 182, 184, 199, 210, 301 cultural practices 148, 309, 335, 373 cultural reality 7, 8, 292 cultural values 114, 172, 235, 372 culture vii, 6, 7, 11–15, 22–25, 30, 35–37, 51, 85–87, 102, 109, 128, 152, 161, 163, 168, 171, 172, 174, 175, 177, 210–213, 217, 224, 226, 251, 252, 255, 258, 259, 262–264, 273, 290, 297, 302, 318, 319, 335, 338, 339, 342, 351, 358, 359, 369–372, 374, 380 cultures clash 217

389

customs 253, 262, 292, 372

D

dance 14, 133, 145, 146, 316, 318–321, 323–325, 327, 376 decode 5, 23 defamiliarization 7, 8 dementia 5, 10, 63, 64, 66, 79, 81, 83–90, 370 Demons 253 demythicisation 7, 8, 379 denial 10, 123–126, 129–131, 146, 149, 352, 371 depression 84, 86, 88, 89 devil 354 dialogue vii, 49, 51–54, 90, 127, 299, 338 diffusion 28, 37, 39, 358, 359 digital technology 271 disability-adjusted life years (DALYs) 162 disability(ies) vi, 86, 87, 232, 250, 255, 258, 261 disablers 338 discourse functions 124 discrimination 85, 86, 105, 124, 195, 198, 257, 258 disease(s) 3, 4, 6, 8–10, 12, 22, 23, 29, 31, 37, 38, 63, 64, 66, 67, 70, 79, 80, 84, 86–90, 102, 121–127, 138, 146, 153, 160, 162, 163, 169, 173, 175, 176, 183, 232–237, 242, 249, 258, 289, 294, 315, 325, 349–351, 354, 356, 357, 359, 361, 371–374, 377–380 disempowered 49, 55 diversity 13, 31, 52

390

Index

drama 128, 136, 292, 318, 322, 327 dysphemism 211, 224

E

Eastern Europe 4 Ebola 22, 37, 38, 356, 357, 361, 380 eclampsia 12, 232–236, 238, 241–243, 373, 377 ecological approach 338 ecological model 31 economic 5, 11, 13, 30, 35, 48, 51, 53, 86, 128, 131, 176, 181, 183, 187, 190, 196, 298, 341, 342, 352, 359, 371, 372, 374 education 10, 11, 14, 30, 49–51, 66, 89, 111, 132, 149, 177, 209, 216, 232–235, 250, 254, 257, 262, 297–302, 304, 307, 308, 310, 320, 327, 334, 337–340, 372, 373 ehaviour(s) 168 elder’s council 14, 316, 322, 323, 327, 377 elderly 15, 83–87, 89, 110, 370, 375 embodied health 161 emotion(s) 23, 24, 27, 29, 321 empowerment 9, 47, 49, 54, 55, 199, 262, 263, 379 enablers 114, 338, 369 enabling environment 10, 114, 184, 371 encode 23, 67 entertainment 152, 198, 276, 318, 319, 321, 323–328 environmental 116, 160, 184, 275, 304, 370 enzymes 67, 68, 71, 125

epidemic 11, 51, 103, 137, 150, 160, 163, 183 epidemiology 64, 84, 89, 124, 125, 233 ethical values 291 ethnicity v, 251 ethnic migrants 181, 196 ethnographic 163, 339 ethos 27 euphemism 122, 211 evil spirits 12, 13, 29, 110, 111, 123, 241, 242, 357, 372, 373 experiential 11, 29 experiential knowledge 335, 341 expert(s) vi, vii, 29, 50, 116, 277, 280, 374 extension 33, 50, 318

F

face work 223 faith healers 123, 253, 373 familial 64, 89, 263 familial AD (fAD) 10, 64, 65, 370 fast foods 161, 173, 176 fat stigma 175, 370 female sexuality 12, 209 female sex workers (FSWs) 105–107, 181, 185, 371 fertility rate 162, 207 festivals vii, 316, 318, 321, 323, 327, 328, 350, 377 film 127, 128, 130–132, 136, 139, 140, 144, 145, 149, 150, 152, 153, 326 focus group 11, 163, 164, 167, 169, 170, 275, 300, 301 folk tales 14, 316 Foucault, M. 6–8, 209, 379

Index

Freire, P. 6–8, 34, 35, 49–52, 55, 373, 379 Freud, Sigmund 11, 358

G

gender v, 66, 86, 116, 129, 131, 141, 143–145, 171, 213, 216, 262, 278 gender-based barriers 302 gender-based stigma 262 gendered violence 182, 198 general practitioners 208 genetic 64, 89, 160, 370 genetic mutations 64 girls 110, 139, 145, 186, 233, 297–305, 308–310, 333, 335, 339–342, 357, 375 global inequalities 34, 39 global public health 6 goals vi, 12, 25, 27, 53, 140, 226, 254, 299 God 109, 110, 127, 131, 136, 240, 259, 352–356, 359–361, 373 Goffman, E. 9, 66, 85, 86, 105, 106, 211, 370 gospel 129, 131, 133, 136, 150, 151 Gospel Group 10, 127, 130 government vii, 103, 121, 124, 126, 149, 151, 160, 174, 184, 210, 236, 243, 316, 328, 350, 353, 354, 357, 371, 376, 378, 380 government communication 316 grassroots 47, 127, 128, 142, 147, 150, 153 group membership 48, 294 guilt 145, 182, 197 Gumperz, J.J. 211–213, 219, 220, 222, 224, 225

391

gynaecological 12, 207, 221 gynaecological consultations 209, 212, 213, 218, 219, 225–227, 373 gynaecologist 208, 209, 212, 213, 215, 219–227, 232

H

Habermas, J. 9, 25, 28, 38, 379 habits vi, 7, 8, 23, 36, 160, 161, 168, 173, 176, 191, 194, 195, 197, 292, 334, 371 healing 252, 253, 259, 353, 358 health vi, vii, 5, 6, 8, 9, 11–15, 22, 31, 33–35, 39, 47–51, 53, 55, 79, 102, 103, 106, 109, 110, 115, 116, 131, 143, 146–148, 160, 161, 166, 168, 170, 172–177, 182, 193, 195, 196, 198, 199, 210, 231, 233, 235, 237, 238, 243, 244, 249, 250, 252, 261, 264, 271, 278, 291, 292, 298–300, 309, 322, 334, 336, 338, 342, 351, 358, 359, 361, 371–374, 379, 380 health behaviors vi, viii, 5, 6, 9, 23, 31, 33, 237 Health Belief Model (HBM) 31, 32, 235, 237, 238 health beliefs 238, 256, 257, 259 health communication v, vi, vii, 5, 6, 8, 9, 11, 14, 23, 37, 223, 338, 372, 375, 379 health communicators v–vii health-enabling vi, 9, 54, 372, 379 health enabling contexts 6, 379, 380 health enabling environments 34, 379

392

Index

health enabling information 379 health-enhancing 49, 54 health facility 109, 111, 113, 162 health information v, 4, 5, 11 health interventions 5, 37, 39, 113, 116, 373 health-limiting vi health services 4, 109, 110, 116, 162, 208, 294, 336 healthy behaviours 6, 47, 379 healthy enabling 49 healthy lives 369 hemorrhage 232, 236 hepatitis 232, 236 herbal 235 herbal remedies 254 high blood pressure 234, 235, 241 high-income 4 high risk behaviours 181, 183, 198 historical 6, 7, 35, 39, 52, 125, 210, 293, 357 HIV/AIDS stigma 10, 51, 102, 127, 149, 371 HIV-afflicted 54 HIV competent 9, 48, 54 HIV negative 101, 102, 104, 108, 136, 371 HIV positive 107, 123, 126, 127, 129–132, 136–138, 141–144, 147, 305, 306, 371 HIV prevalence rate 14, 102, 297–299 HIV prevention 10, 47, 49, 53–55, 102–104, 108, 111, 113–115, 183, 196–199, 309 HIV stigma 101 holy water 109, 110, 241 homogeneity 250 homosexual 122, 125

hormones 160, 220 human development 250 Human Immunodeficeny Virus (HIV) vi, 3–5, 8–11, 14, 22, 24, 36, 30, 47, 53, 54, 101–108, 113, 115, 121–128, 130, 132–135 human rights 149, 182, 352 hyperphosphorylation 66, 69–71, 73, 77, 78 hypertension 12, 163, 164, 172, 173, 176, 232–234, 241, 243

I

identity 9, 34, 39, 49, 54, 86, 144, 147, 150, 185, 255, 261, 277, 292, 293, 295, 296 ideology 125, 141, 319 ignorant 26, 30, 36, 50, 168 illiteracy 236, 258 illocutionary 24, 25 illumination 27 imbalance of power 216 immigrants 125 immune system 124 implementation 5, 28, 103, 104, 249, 251, 263, 299, 308, 309 indigenous vii, 14, 209, 328, 335, 339, 341 indigenous African viii, 318 indigenous communication 8, 10, 14, 316, 323, 324 indigenous knowledge vi, 15, 333, 335, 336, 339, 342 individual autonomy 256 individuality 273 inequalities v, 10, 53, 55, 141, 181, 184, 196, 199, 250

Index

inequities 182, 250, 252, 258 infant mortality 207, 315 informal education 340, 375 initiation rites 339, 375 initiation schools vii, 337 innovation 28, 29, 37, 298 institutional policies 182, 199 integration 6, 9, 10, 27, 37, 277, 321, 370 intelligibility 25 Interactional Sociolinguistics 212, 213 interactive radio 14, 300, 375 internalized stigma 107 internet vii, 14, 177, 272, 274, 322, 355, 359, 376 internet addiction 271, 274 interventions 11, 13, 15, 31, 33, 113, 116, 117, 128, 153, 184, 199, 251, 260, 262–264, 294, 308, 309, 333, 336, 338, 339, 342, 351, 356, 372 intimate partners 182, 191, 192, 197, 198, 342, 370 intravenous drug users 125 ischemic heart disease 4, 5 Islam 9, 242, 351 Islamic beliefs 253 IThemba 127, 130, 136, 141, 149, 150, 152, 153

K

key populations 4 kinship 255–257 knowledge vi, vii, 9, 27, 28, 30, 34, 35, 37, 39, 50–52, 88, 114, 124, 125, 128, 133, 141, 142, 149, 151, 163, 164, 209, 212,

217, 257, 296, 336, 379

393

234–236, 239, 242, 252, 277, 283, 289, 291, 292, 297, 299, 309, 319, 320, 337, 342, 358, 372–374,

L

legitimacy 25 Lent 12, 350, 360, 374 Lexical borrowing 219 linguistic taboo 12, 211–213, 223, 224, 226, 373 lived experience(s) 52, 105, 107, 108, 176, 184, 194, 198, 256, 301 local medicines 235 locutionary 24 logos 27 lower income 4 Luckmann, T. 7 Luhmann, N. 25–30, 35, 38, 379 lyrics 127, 128, 145, 150, 151 lysosome 74, 77, 78

M

Maghreb 13, 251, 259 magic 7, 123, 318, 324, 373, 379 mainstream 31 malaria 4, 5, 8, 14, 102, 138, 162, 315, 316, 323–328, 376 malaria burden 14, 316, 328 marabouts 253, 261, 373 marginalised 49, 50, 54, 55, 379 marginalised communities 49, 51 martyrdom 12 masquerade 316, 318, 321, 323, 326, 327, 376

394

Index

mass media 177, 290, 315–317, 322, 323, 327, 328 maternal deaths 12, 231, 232, 234, 243 maternal health care 236 maternal mortality 231, 232, 236, 242–244, 315, 373 maternal mortality rate (MMR) 207, 236 meaning 5, 6, 8, 23, 25, 27, 31, 35, 36, 38, 122, 127, 145, 152, 185, 217, 221, 222, 301, 319 media 35–38, 122, 124, 125, 150, 152, 232, 244, 271, 276, 277, 282, 289, 290, 292–296, 300, 310, 316, 317, 319, 328 media coverage 36 media for development 318 media intervention 290, 294, 299, 309, 375 medication 108, 132, 134, 137, 138, 141, 144, 146, 151 memory loss 9, 81, 83 men at risk 104, 371 meningitis 232 menstruation 209, 223, 339 mental vi, 7, 29, 86, 87, 252, 254, 257, 258, 281, 357, 370, 373 mental disorders 280 mental health vi, 8, 13, 89, 251, 253, 254, 258, 261, 264, 279, 282, 283, 359, 372, 373, 377 mentorship 339, 341 message 5–7, 23, 25, 35, 36, 38, 39, 104, 127, 129, 145, 150, 151, 171, 177, 221, 290, 291, 300, 302, 303, 308, 317, 318, 321–328, 335, 338, 361, 376, 379

Middle East 4, 251 middle income 4, 5 midwives 208 misunderstandings 26, 38 mitochondria 71, 73, 74, 77 mitochondrial dysfunction 66, 71–74 mitochondrial respiration 71 mobile phones 271 modernization 161 molecular defect(s) 9, 64, 66, 70 moral 7, 22, 109, 124, 161, 337, 340, 358, 375 morbidity 231–233, 243 mortality 161, 162, 231, 233, 242 Moscovici, S. 9, 12, 27–29, 35, 38, 358, 374, 379 mosque 351, 354, 355, 360 motivation 33, 35, 112, 250, 257, 261, 275, 276, 290, 291, 304 multicultural contexts 338 multilingual 12, 209, 213, 373 multiparous mothers 236 music vii, 10, 14, 127–130, 132, 133, 135, 137, 141, 151–153, 316, 318–320, 323–327, 376 Muslim culture 251 Muslims 238, 352, 354 mutations 65, 67, 68, 73, 78, 89, 370, 378 mutual understanding 25, 26, 28, 38 mystical power 253 mythical discourses 124 myths 7, 122, 234, 300, 318

N

naïve 51, 379 naïve perception 7, 373

Index

networks vi, vii, 10, 48, 49, 53, 69, 74, 81, 84, 114, 153, 272, 293, 303, 305, 307, 317, 318 neurodegenerative 9, 63, 70, 370 neurofibrillary tangles (NFTs) 10, 65, 67, 69–71, 73 neuroscience 84, 89 Nigeria vi, 4, 11–14, 104, 183, 184, 196, 207, 231–236, 238, 274, 277, 283, 315–317, 324–326, 328, 350–357, 359, 360, 370, 372, 373, 376–378 non-communicable diseases (NCDs) 5, 6, 8, 11, 14, 64, 159, 162–164, 166, 172, 173, 176, 177, 377 non-governmental organisations (NGOs) 103, 104, 151, 380 normalization 146, 147, 183, 190 norms 9, 13, 15, 22, 25, 29, 48, 55, 105, 106, 116, 172, 175, 211, 250, 251, 255, 257, 259, 264, 295, 321, 335, 337, 342, 372 North Africa 4, 251 Nudge Theory 31, 33

O

obesity vi, 11, 160–164, 166, 168–177, 370, 377 obsession 13, 281 obsessive selfie taking 13, 275, 279, 283, 374 obstetrician(s) 208, 209, 213, 232 online 271, 272, 356, 360 opinion leaders 166, 238, 243, 322 oppress 50 organisational memberships 48 orthophemism 211

395

overweight 160–164, 168–177 oxidative phosphorylation 71 oxidative stress 70–78, 81

P

pandemic 6, 9, 102, 326, 349, 351–353, 355, 359, 361, 374 para-linguistic 320 paranormal beliefs 358 parent-daughter communication 335 participatory processes 50 partition 27 partnerships 209, 251, 254, 261, 264, 298, 336 pastors 108, 113, 350, 353, 357, 372 paternalism 256, 257, 259 pathos 27 pedagogy 51, 52 Pentecostal 353 perceptions 10–12, 15, 32, 50, 66, 106, 161, 163, 164, 166, 168, 170, 174, 175, 177, 189, 199, 234–237, 252, 280, 299, 351, 373, 378 perinatal mortality 233 peripheral ideas 294, 295 peripheral route 291 perlocutionary 24, 25, 38 persuasion 26, 27, 290, 327 persuasion theories 290, 295 phenotype 160 physical activity 160, 163, 168, 169, 175, 177, 178 physical distancing 12, 350 physical health 87 physical inactivity 159, 176 pimps 182

396

Index

planning 5, 47, 256 police 182, 188, 190, 191, 195, 370 police violence 190 policing 183, 184, 190, 197, 326 policy v, 5, 11, 37, 47, 103, 126, 149, 162, 163, 177, 196, 199, 252, 290, 294, 334, 372, 379 poliomyelitis 369, 377 polio virus free 378, 380 political economy 143, 144, 148, 183 politics 125, 144, 152, 371 poor 5, 13, 14, 50, 53, 66, 103, 130, 138, 143, 144, 148, 159, 170, 174, 175, 182, 185, 238, 241, 250, 283, 334, 372, 373 post-colonial 209 postpartum 232 poverty v, 15, 124, 138, 153, 162, 181, 184, 185, 187, 196, 198, 199, 250, 258, 294, 297, 342, 379 power 9, 26, 34, 39, 47, 52–55, 81, 110, 124–126, 135, 144, 182, 187, 198, 216, 225, 256, 264, 293, 299, 372, 373, 379 power asymmetry 220 power dynamics 259, 262 powerless 50, 145 powerlessness 49, 189, 196 praise-singing 320 praxis 51, 52, 250 prayer(s) 12, 22, 110, 240, 241, 350, 351, 356, 357 preeclampsia 12, 233, 373, 377 pre-exposure prophylaxis (PrEP) 10, 101, 102, 104–108, 111–116, 371

pregnancy 8, 12, 108, 209, 232, 234–236, 238–244, 297, 298, 301, 302, 307, 308, 333–335, 341, 373, 375 pregnant learners 334 pregnant women 12, 104, 236, 238, 240–244, 315, 371, 373 Presenilins 67, 68, 72 preterm birth complications 5 prevalence 64, 66, 84–86, 88, 89, 103, 160, 162, 163, 299, 333 prevention v, 4, 9, 14, 22, 31, 48, 103–105, 108, 163, 166, 168, 171, 174, 177, 237, 241, 309, 325, 327, 336, 376 primary health care 236, 251 Private Health Practitioners (PHP) 162 Private Not- For- Profit (NFP) 162, 208 problematisation vii, 6–8, 36, 50, 379 problem-posing 50, 51 process school 23 promiscuity 22, 101, 107, 115, 122, 124, 145, 371 propaganda 27, 37, 358 propagation 319, 358 prophets 109 prostitutes 106, 122, 125, 188–191, 194, 195, 371 prostitution 115, 194 protection motivation 32 protein misfolding 71, 74 proteostasis 69, 74 psychiatric hospitals 259, 372 psychiatrist 252 psychoanalysis 11, 27, 358

Index

psychological vi, vii, 9, 32, 34, 47, 49, 51, 54, 123, 237, 273, 276, 278, 282, 308, 338 psychological distress 88 psychosocial 35, 54, 116, 254, 261, 273, 275, 334 psychosocial disabilities 256 puberty rites 339 public engagement 375 public health vi, 3, 8, 10, 11, 29, 31, 37, 39, 48, 51, 52, 55, 102, 151, 160, 171, 208, 235, 351 public opinion 30, 35–37 public perceptions 8, 9, 12, 36, 83 public square 379 public understanding of science 30

Q

qualitative research 105, 177, 212, 301 quantity of coverage 36, 37

R

radio vii, 14, 126, 173, 177, 292, 300–302, 304, 308, 309, 317, 322, 355, 359, 376 Ramadan 12, 350–352, 354, 360, 374 recipient 6, 26, 35, 38, 145, 290 reciprocity 48 reckless sexual activity 125 refugee 162 rejection 26–28, 38, 39, 194, 198, 211, 258, 295, 319, 358, 379 religion 8–12, 22, 102, 109, 116, 124, 350, 351, 357–361

397

religious 10, 12, 22, 51, 53, 85, 102, 103, 113, 114, 126, 150, 259, 293, 350, 351, 357, 359, 360, 373, 378 religious beliefs vi, vii, 6, 12, 13, 150, 233, 250, 251, 352, 359, 372, 374, 379 religious institutions 9, 11, 350, 355, 356, 358–360, 374 religious leaders 12, 116, 260, 299, 353, 355, 357, 359–361, 374 religious rituals 319 renal failure 232 resistance vii, 37, 144, 150, 292, 295, 352, 353, 374, 378 respiratory infections 5, 162 rhetoric 26, 27 risk environment 11, 183, 184, 192, 196, 198, 199 risk factors 10, 64, 70, 89, 160, 161, 163, 164, 168, 172, 176, 177, 183, 236, 239 risk of HIV 104, 181, 196, 297 risk perception 8, 11, 23, 29, 30, 108, 242 risk reduction 182, 184, 198 risky 22, 29, 36, 112, 187, 304 rite of passage 339, 375 rituals 294, 318, 321, 323, 324, 339, 356 road injury 5 rumors 37, 38, 123, 322, 378 rural vii, 14, 81, 84, 90, 145, 153, 165, 168, 169, 174, 176, 238, 254, 316, 324, 326–328, 334, 335, 376 rural areas 14, 15, 122, 132, 141, 146, 162, 168–170, 173, 175,

398

Index

210, 253, 254, 258, 297, 299, 302, 316, 326, 334, 339, 376 rural communities 14, 169, 170, 173, 236, 243, 316, 321, 324, 325, 328, 373, 376 rural dwellers 163, 316, 322 rural populations 175, 210, 253, 261, 316, 328

S

sacred 252, 254 sacrifice 87 safety 22, 196, 199 SARS-CoV-2 349 scaling up 103 school dropout 303 science 9, 11, 12, 30, 37, 38, 124, 351, 356, 358–361, 371, 372, 374 science communication 10, 66, 89, 373, 379 scientific knowledge vii, 7, 29, 30, 127, 379, 380 scientists 12, 30, 105, 142, 147, 151, 237, 350, 355, 360, 379 secret services 121 secular 252, 254, 373 sedentary lifestyle 161 self-control 175, 193, 340, 341, 370 self-efficacy 32, 183, 198, 238, 291 self-esteem 13, 131, 258, 281–283, 294, 374 selfie addiction vi, 274, 275 selfie contagion 273 selfie deaths 274 self-importance 273 selfitis vi, 13, 272, 273, 275, 277, 278, 281–283, 373, 374

self-stigma 189, 261, 370 semiotic schools 23 sepsis 232, 236 sero-discordant 104, 106, 371 sex 4, 10, 22, 105, 107, 112, 113, 185–192, 196, 197, 297, 305, 310, 335–337, 360, 375 sex education 309, 336 sexual encounters 22 sexual health 336, 337, 358 sexuality 12, 125, 211, 298, 299, 335–338, 341, 375 sexual reproductive health 337 sex work 11, 106, 107, 112, 113, 115, 181–188, 190–194, 196–199, 371 sex workers 4, 10, 11, 104, 106, 107, 116, 181–185, 187–199, 370–372 shaman 252 shame 84, 107, 111, 123, 124, 126, 182, 210, 258, 297, 338, 341 shrines 109, 253 simulated consultations 213, 217, 219–221, 224, 226 sin 124, 127, 356, 371 Sinikithemba 10, 127–133, 135– 138, 141, 145, 146, 149, 150 smoking 29, 88 social vii, 5, 9, 11, 13, 23, 29, 34, 38, 39, 50–53, 66, 84, 87, 102, 103, 105, 113, 122, 124, 127–129, 133, 134, 140, 141, 144, 146, 147, 160, 163, 171, 174, 182–184, 189, 192, 198, 211–213, 222, 237, 238, 251, 252, 256, 258, 261, 262, 275–277, 283, 290, 291,

Index

293–296, 298, 304, 307, 321, 340, 342, 350, 352, 359, 370, 372, 374, 375, 380 social capital 9, 47–49, 53–55, 293, 379 social change 5, 34, 35, 47, 51–55, 290, 292–295, 299, 300, 375 social cohesion 48, 128, 319 social contexts vi, 49, 134, 299, 302 social dynamics 13, 250, 372 social epidemic 273 social epidemiology 183 social exclusion 106, 182, 198 social identity 9, 47, 55, 86, 105, 293, 294, 296, 379 social ills 320, 325 social inequalities 34, 53, 140, 251 social injustices 140, 250 social justice 31 social media 177, 271, 272, 275–280, 282, 283, 355, 374 social morals 340 social movements 129, 151, 152, 379 social norms vi, 11, 37, 170, 171, 175, 176, 259, 261, 290, 292–296, 299–301, 304, 309, 319, 379 social problem(s) 7, 26, 274 social representations 9, 14, 27, 294–296, 309, 374 social status 161, 278, 279 social stigma 334 social systems 7, 26, 28, 54, 153 societal beliefs 105 socio-cultural 11, 172, 174, 175, 252, 259, 263, 264, 308, 338, 342 sociocultural factors 259

399

socio ecological model 10, 113, 114, 117, 371 socio-economic 66, 86, 130, 185, 334 sociolinguistic 12 sociology of health 183 sorcery 123, 253 source credibility theory 316, 323, 328 South Africa vi, 4, 10, 14, 15, 26, 64, 81, 84–86, 102, 104, 107, 121, 122, 125, 126, 128, 130, 135, 141, 147–149, 151, 175, 176, 298, 333, 335–338, 350, 358, 359, 370, 371, 375, 376 Southern Africa 4, 9, 296 Speech Acts 9, 24, 25, 38 speech impairment 83 spirit 110, 318, 320, 323–327, 339, 352–354, 370 spiritual 27, 86, 109, 242, 254, 319, 321, 327, 338, 358, 370 spiritualism 109 spiritual leaders 254, 260, 264 sporadic 64, 67, 89 sporadic AD (SAD) 10, 64, 65, 70, 71, 81, 83, 370 stereotype 10, 37, 86, 122, 145, 257, 294, 371 stigma 8–10, 66, 86, 89, 102, 105–108, 111, 116, 123–126, 129, 145, 149, 150, 176, 182, 190, 194, 195, 198, 257, 258, 297, 302, 305, 334, 336, 370–372, 375, 379 stigmatization 6, 10, 66, 87, 182, 183, 194, 336, 376 story-telling vii, 316, 319, 320, 326, 377

400

Index

strategic action 25, 27 street sex 181–183, 185, 187, 188, 190, 192, 194, 196–199 stroke 4, 5, 64, 86 structural inequality 182, 198 structural intervention 183, 184 structural violence 182, 183 struggle for freedom 122, 149 subsistence farming 162 substance abuse 182, 192, 193, 197–199 substance use 182, 197 surveillance needs 277 switching 12, 221, 224, 226, 373

T

taboo(s) 12, 211–213, 224, 226, 227, 336, 341, 373, 375 tau 10, 66, 67, 69, 70, 73, 74, 77–79, 81 technological addictions 271 teenage mothers 334 teenage pregnancy(ies) vi, 14, 15, 297, 333–342, 375, 376 tension release needs 277 test positive 139 thematic analysis 302, 303, 306 Theory of Planned Bahaviour (TPB) 31, 33 Theory of Reasoned Action (TRA) 31, 33 top-down v town hall 14, 316, 322 townships 128, 132 traditional birth attendants (TBAs) 12, 13, 233, 234, 236, 238, 242, 243, 373

traditional communication practices 376 traditional healers 254, 359 traditional rites 22, 339, 375 tradition(s) vi. See, 6, 8, 12, 14, 22, 26, 31, 49, 50, 86, 109, 113, 116, 123, 128, 132, 139, 143, 145, 152, 161, 233, 238, 253, 258, 260, 261, 264, 289, 290, 317–327, 340, 359, 360, 372, 374–376, 379, 380 transfer knowledge 50 transformation 52, 142, 147, 152, 301 transformative social action 52 transgender 4, 104, 105, 371 treatment v, 4, 6, 9, 11, 13, 48, 75, 79, 83, 86, 89, 90, 102, 103, 105, 112, 123, 124, 129–131, 133–139, 142–144, 146, 148, 149, 151, 183, 195, 198, 199, 209, 234, 235, 237, 243, 249–254, 261–263, 294, 327, 356, 359, 372, 374 trust 37, 48, 49, 195, 290, 316, 317, 322, 328, 360, 376 trust relationships 48 trustworthiness 25, 167, 317, 323 truth 25, 27, 38, 122, 218, 240 tuberculosis 4, 5, 36 tubulin 69, 70, 74 type 2 diabetes 160, 163

U

unhealthy diet 159, 163 unhealthy dietary practices 177 universal access 250, 252, 262 universal mental health 250, 372

Index

unprotected sex 182, 188, 189, 193, 197, 199 uptake 4, 5, 10, 11, 14, 15, 71, 102, 116, 259, 335, 337, 338, 372 uses and gratification theory(ies) 276, 282, 316, 317, 328 V

vaccination 357, 377 vaccination campaigns 357, 378 vaccine 357, 377, 378 validity 25, 38, 276, 352 values vi, 6, 25, 35, 37, 257, 259, 262, 292, 294, 304, 319, 321, 335, 337 violence 85, 89, 138, 145, 153, 182, 187–192, 196–199, 297, 342, 370 virginity 139, 145, 340, 341 virus 12, 22, 38, 102, 133, 141, 149, 349, 350, 352, 353, 355, 357, 360, 374, 377, 380 vulnerability 32, 182–185, 187, 193, 196, 197, 199, 250, 258, 298, 301, 302, 304, 305, 310, 375 vulnerable v, 4, 66, 84, 89, 143, 145, 182, 183, 198, 241, 255, 259, 263, 264, 297–299, 310, 315, 334 vulnerable groups 86, 250

401

WHO Africa region 3, 4, 377 Wild Polio Virus (WPV) 377, 378, 380 witchcraft 85, 86, 124, 125, 241, 371, 372 witches 86, 87, 126, 241, 242, 370 women vii, 12, 15, 29, 64, 85, 86, 88, 89, 103, 105–108, 110– 112, 115, 116, 122, 143–146, 160, 161, 164, 169–172, 181, 185–187, 195–198, 209, 213, 216, 223, 233, 235, 241, 249, 250, 258, 259, 262, 280, 296, 297, 304, 305, 316, 322, 334, 339–341, 375 women’s bodies 210, 211 women’s groups 14, 49, 322, 327, 377 World Health Organisation (WHO) 3, 4, 6, 102, 104, 105, 159, 160, 162, 231–233, 349, 371, 377–379 World-views vii, viii worship practices 318, 324

X

x-phemism 211, 224, 225

Y W

wellbeing 10, 34, 161, 175, 322 West Africa 4, 22, 38, 356, 357, 380 Western models 376 Western origins 378 Western psychiatry 252

years lost due to disability (YLDs) 162 Years of Lives Lost (YLLs) 162 young mothers 310, 334 young women 10, 15, 22, 173, 296–302, 304, 305, 309, 310, 334, 342, 371