Health Inequity Experienced by Australian Paediatric Patients: Empirical Analyses of Case Reports 9811633371, 9789811633379

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Vicki Xafis · Amireh Fakhouri · Kathryn Currow · Stephen Brancatisano · Wendy Bryan-Clothier

Health Inequity Experienced by Australian Paediatric Patients Empirical Analyses of Case Reports

Health Inequity Experienced by Australian Paediatric Patients

Vicki Xafis · Amireh Fakhouri · Kathryn Currow · Stephen Brancatisano · Wendy Bryan-Clothier

Health Inequity Experienced by Australian Paediatric Patients Empirical Analyses of Case Reports

Vicki Xafis Centre for Biomedical Ethics National University of Singapore Singapore, Singapore Kathryn Currow School of Medicine University of Sydney Sydney, NSW, Australia

Amireh Fakhouri Monash University Melbourne, VIC, Australia Stephen Brancatisano Blacktown and Mt Druitt Hospitals Sydney, NSW, Australia

Wendy Bryan-Clothier Ministry of Health New South Wales Health St Leonards, NSW, Australia

ISBN 978-981-16-3337-9 ISBN 978-981-16-3338-6 (eBook) https://doi.org/10.1007/978-981-16-3338-6 © 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 Springer 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

Preface

This unfunded research was undertaken by Vicki Xafis (VX), Amireh Fakhouri (AF), Kathryn Currow (KC), Stephen Brancatisano (SB), and Wendy Bryan-Clothier (WBC). The research was conceived by AF, KC, and VX and designed by VX, AF, KC, and SB. The majority of analysis of the SDH was undertaken by VX and AF with KC, SB, and WBC contributing critically to discussions and analysing certain sections. The findings were interpreted by VX, AF, KC, SB, and WBC. VX wrote most of the first draft of this book and all authors contributed sections which were reviewed by VX. All authors critically reviewed the final manuscript. Final approval was granted by all authors. At the time of data collection and through much of the analysis, VX, AF, KC, and SB were employed at The Sydney Children’s Hospitals Network (SCHN), which has been informed of the publication of this research. WBC had left SCHN at an earlier time. KC remained affiliated with SCHN until July 2019 and VX and AF remained affiliated with SCHN until early 2020 while SB left SCHN in February of 2021. Use of the Case Reports (CRs) for research purposes was conceived by Dr. Currow, who led the course for decades and introduced the CRs as part of the assessment. She was aware of the wealth of data in such reports through her evaluation of students’ work, often deeply distressing due to the descriptions of health inequity. Dr. Currow reflected on the importance of a much broader awareness of this data and the need to advocate for children and young people in the hope that raising awareness may drive systemic changes to improve the health and wellbeing of children and young people. Such research has never been undertaken anywhere in the world and is relevant to all health practitioners involved in the care of children/young people and scholars in public health, paediatrics, social work, wellbeing, ethics, and many more fields. Importantly, the book will be useful to policymakers, politicians, and any reader who demands that health inequity be addressed so that our precious children and young people have a chance to lead a full life in good health; these precious people form the future of all nations. The structure of the book follows two main areas of enquiry: the first focuses on identifying and mapping the social determinants of health that lead to health inequity; v

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the second area of enquiry focuses on how professionals responded to the health inequity they encountered in clinical practice, the challenges healthcare professionals and families faced, and the impact their interventions had on the children/young people and their families in terms of outcomes. Chapter 1 provides a brief introduction to the broad issues raised by health inequity making reference to children and young people’s health and wellbeing through different conceptual lenses. It clarifies the concept of health inequity and social determinants of health (SDH) and highlights some of the impacts of SDH on children’s health and wellbeing as well as benefits associated with reducing health inequity. The chapter discusses the significance of the research, the source of data analysed, definitions used in the analyses and concludes with an articulation of the overall aim of the work. Chapter 2 provides insight into the methods adopted and methodological considerations underlying the analyses. It provides details of the sampling method employed, the analytical method adopted, as well as details of the generation of an amended version of a published framework which was employed to structure the findings of this research. It also describes how quality and rigour in the analytical processes were achieved and how differences were resolved. Finally, the chapter provides clarifications regarding differences in practice among researchers applying qualitative analytical methods. Chapter 3 provides ‘a bird’s eye view’ of all the patterns identified in relation to the SDH. A comprehensive table maps the SDH and associated sub-themes, as they relate to each child/young person. The aim is to highlight the great complexity arising from children/young people’s exposure to numerous factors which contribute to and perpetuate health inequity. The chapter also introduces readers to six of the real patients included in the study to provide insight into how the social circumstances into which the child/young person was born and is being raised are shaping his/her life. Chapter 4 focuses on the analyses associated with the SDH identified as impacting adversely on the health and wellbeing of the children/young people reported by healthcare professionals to whom these patients had presented for medical attention. It commences with demographic features of the cohort and proceeds to present each of the SHD and sub-themes with summary tables provided throughout to guide the reader. Chapter 5 also comprises a major chapter, as it discusses the findings relating to the SDH and the sub-themes identified as impacting on the health and wellbeing of the cohort under consideration. Substantial reference to the literature relating to each SDH is made and each section concludes with a set of questions in the Pause to think boxes to re-focus readers’ attention back to the real children and young people whose lives are examined in this research. The second line of enquiry is presented in Chaps. 6–9. Clarification of what constitutes a challenge in this work is provided in Chapter 6, which presents the obstacles that healthcare professionals and families encountered according to healthcare professionals. The chapter presents the wide variety of issues that needed to be faced and overcome so that appropriate treatments, care, and supports could be provided both within the context of the healthcare service where the patient presented but also beyond, both geographically and temporally. Chapter 7 presents the strategies

Preface

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adopted by healthcare professionals to address their patients’ health needs, which they recognised were intertwined with broader familial and social issues that they attempted to address. The chapter concludes with an overview of how health inequity might be addressed based on the healthcare professionals’ responses and views, where expressed. Chapter 8 presents findings on the outcomes realised for these patients and their families, as a result of the health and social measures adopted. The chapter identifies cases where ongoing health and/or socioeconomic issues would continue to affect patients’ overall health and wellbeing, cases where the need for ongoing healthcare involvement was cited, cases where health issues were cited as having being resolved or improved, cases where related socio-economic issues were resolved or improved, and cases where an improved family outcome was achieved. Chapter 9 provides a discussion of the findings relating to the challenges faced by healthcare professionals and parents, the health and social support measures adopted to address the patients’ healthcare needs, and the outcomes realised as a result of the care provided. The chapter offers a broader view of some of the complex underlying issues that result in health inequity in Australia with a discussion of: the complexity of the Australian healthcare system; the cost of healthcare; patient advocacy and linking patients to services; the role of healthcare professionals in addressing health inequity; the benefits of addressing health inequity and the cost of inaction; and strategies to reduce health inequity identified in the literature. The chapter concludes with a call to embrace a paradigm shift in our approach to health and healthcare. Chapter 10 summarises the research, reflects on the contribution this work makes to the field, and highlights areas where further attention must be paid. In this chapter we also emphasise the impact of health inequity during pandemics. We highlight the unique and historically singular opportunity we are presented with to reflect, to acknowledge, and to re-imagine complex systems which have contributed, for countless decades, to structural injustice that has led to health inequity. In this final chapter, we also put forth the limitations of the study. Singapore, Singapore Melbourne, Australia Sydney, Australia Sydney, Australia St Leonards, Australia

Vicki Xafis Amireh Fakhouri Kathryn Currow Stephen Brancatisano Wendy Bryan-Clothier

Declarations

Case Reports (CRs): All submissions by participants in the program are the property of the Sydney Child Health Program (SCHP) and may be used for education, advertising, course development, or other purposes, with acknowledgement. Ethics approvals: Sydney Children’s Hospitals Network Human Research Ethics Committee; Ref No: LNR/16/SCHN/188 and the Aboriginal Health & Medical Research Council Ethics Committee HREC; Ref No: 1350/17. No consent was required from the health professionals who wrote the case reports, as they had already agreed to the use of the CRs, as described above. This book was written by the authors in a personal capacity and none of the opinions expressed herein should be attributed to any other entity or organisation with which the authors are affiliated.

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Acknowledgements

We are grateful to the staff of the Sydney Child Health Program and the Sydney Children’s Hospitals Network who have been supportive of the publication of this research. We are also most grateful to the Aboriginal and non-Aboriginal reviewers for their feedback and insights. We are particularly grateful to the reviewer who, in addition to broad comments, provided comments throughout the manuscript where s/he thought these may be useful, particularly in relation to issues affecting Aboriginal and Torres Strait Islander Peoples.

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Contents

1

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1 Children and Young People’s Health and Wellbeing Through Different Lenses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2 Understanding the Impact of Health Inequity on Children and Young People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3 Significance of Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4 Source of Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5 Definitions Used in the Analyses . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

3 5 7 7 8

2

Methods and Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2 Theoretical Paradigm Guiding Analysis . . . . . . . . . . . . . . . . . . . . . 2.3 Sampling Method and Data Quality . . . . . . . . . . . . . . . . . . . . . . . . . 2.4 Methods of Analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

13 13 13 14 15 18

3

Overview of Social Determinants of Health Findings and Vignettes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2 Overview of Social Determinants of Health Findings by Case . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3 Vignettes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4 Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

4

Results of Health Inequity Analyses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2 Demographic Characteristics of the Whole Sample . . . . . . . . . . . . 4.3 Health Inequity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4 Social Determinants of Health (SDH) . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

1 1

21 21 22 22 25 29 29 30 33 33 73

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Contents

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Discussion of Findings on Social Determinants of Health . . . . . . . . . . 5.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2 Income & Wealth . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3 Employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4 Crime & Safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5 Education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6 Secondary Consequences of SDH . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.7 Health Systems and Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.8 Food Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.9 Housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.10 Transport . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.11 Social Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

75 75 76 81 84 87 90 94 99 102 106 108 113

6

Challenges Faced in Addressing the Needs of These Children/Young People . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.2 How ‘Challenge’ is to Be Understood . . . . . . . . . . . . . . . . . . . . . . . 6.3 Health Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6.4 Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

123 123 124 124 125

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Solutions Adopted for These Children/Young People and Their Families . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2 Types of Solutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2.1 Improving Continuity of Care . . . . . . . . . . . . . . . . . . . . . . . 7.2.2 Offering Support to Patient and Family . . . . . . . . . . . . . . . . 7.2.3 Linking to Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2.4 Involvement of Foster Care/Child Protection Services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2.5 Alleviating Financial Stress . . . . . . . . . . . . . . . . . . . . . . . . . 7.2.6 Transport . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2.7 Engaging Schools . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2.8 Educating Patients and Families . . . . . . . . . . . . . . . . . . . . . . 7.3 Working Towards Resolving Health Inequity . . . . . . . . . . . . . . . . . Outcomes: How These Children/Young People and Their Families Fared . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.2 Ongoing Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.3 Health Issues Resolved or Improved . . . . . . . . . . . . . . . . . . . . . . . . 8.4 Ongoing Contact with Healthcare Providers . . . . . . . . . . . . . . . . . . 8.5 Related Socio-Economic Issues Resolved or Improved . . . . . . . . . 8.6 Improved Family Outcome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

127 127 128 128 129 129 131 132 133 134 135 136 139 139 139 140 141 141 142

Contents

9

Discussion of Challenges, Solutions, and Outcomes . . . . . . . . . . . . . . . 9.1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.2 Complexity of the Australian Healthcare System . . . . . . . . . . . . . . 9.3 The Cost of Healthcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.4 Patient Advocacy and Linking Patients to Services . . . . . . . . . . . . 9.5 The Role of Healthcare Professionals in Addressing Health Inequity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.6 The Benefits of Addressing Health Inequity and the Cost of Inaction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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143 143 143 144 146 147 149 151

10 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 155 10.1 Limitations of the Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157 Reference . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 158

About the Authors

Dr. Vicki Xafis BA (Languages), (Hons1-Linguistics), RSA DTEFLA, MBioethics, Ph.D. (Ethics-Law) Vicki is an ethicist, linguist, researcher, and educator and has held positions at numerous Australian universities and the Victorian Department of Health and Human Services. A highlight in Vicki’s career was setting up the Clinical Ethics Service at the Sydney Children’s Hospitals Network (Sydney, Australia), with support from dedicated senior clinicians. Vicki was founding member and Secretary of the Perinatal Palliative Care Subcommittee (Perinatal Society of Australia and New Zealand— PSANZ) from 2013–2017 and an Executive Committee member of the Public Health Association of Australia (South Australian Branch) from 2011–2013. She remains a member of the PSANZ Policy Subcommittee and is a Cochrane review author. She is now a Senior Research Fellow at the Centre for Biomedical Ethics at the National University of Singapore. Her greatest achievement and privilege in life is having made a small contribution to the lives of children, young people, and adults through her teaching. Dr. Amireh Fakhouri is a General Practice Registrar currently completing her training with the Royal College of General Practitioners in Victoria. Dr. Fakhouri completed her hospital training in New South Whales at Westmead Hospital and Westmead Children’s Hospital between 2015–2018 whereby she commenced this research venture, whilst completing her Diploma of Child Health through SCHN and The University of Sydney. Dr. Fakhouri later moved to Victoria to complete a year of Obstetrics and Gynaecology, and successfully completed her Certificate of Woman’s Health through the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. In addition, Dr. Fakhouri is also currently doing her Masters of Population Health though Monash University. Dr. Fakhouri has seen firsthand the inequities these children face throughout her professional career, and feels strongly about the importance of this work because she is also a mother of two beautiful young children.

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About the Authors

Dr. Kathryn Currow Founder and Managing Director MBBS (Syd); Grad Dip Bioethics; DCH; GAICD; AMICDA Kathryn is a paediatric doctor, medical educator and leader, with broad ranging Australian and international experience. She is passionate about contributing to improvements in the health and wellbeing of children and young people in Australia and globally. Kathryn was previously Executive Principal of the Sydney Child Health Program from 1997 to 2018. She now holds an academic role as Associate Professor at the University of Notre Dame. She is also Vice President of The Commonwealth Association for Health And Disability. Kathryn is recognised as a Global Goodwill Ambassador and serves on the Australian Scientific Advisory Board member for ‘Stronger Brains’. Kathryn’s commitment for advancing the health and rights of children and young people globally is a life-long passion. Dr. Stephen Brancatisano is a General Paediatrician at Blacktown and Mt Druitt Hospitals. He undertook paediatric training within the Sydney Children’s Hospitals Network, during which time he undertook the work contained within this publication. Stephen has previously completed a Bachelor of Laws, and maintains an interest in Clinical Ethics. Ms. Wendy Bryan-Clothier is a descendant of the Wirangu and Kokatha peoples from South Australia, and was born and raised on the lands of the Darug people in New South Wales. Starting her career in health in 2002, Wendy has since completed a Bachelor of Applied Science (Environmental Health) through the University of Western Sydney, a Graduate Certificate in Health Service Management through Charles Sturt University, and a Masters of Health Service Management with the University of Western Sydney. Wendy has formally worked within teams and services including: Aboriginal Health; Aboriginal Workforce; the population health frameworks of Environmental Health and Health Promotion; in Clinical Governance, Patient Safety & Quality, and Accreditation.

Abbreviations and Terms

Aboriginal

Aboriginal Health Workers

Aboriginal Liaison Officers

Aboriginal and Torres Strait Islander ABS AH&MRC AIHW Bulk billing

Used in NSW Health as the collective term for Aboriginal and Torres Strait Islander peoples, recognising that Aboriginal people are the traditional custodians of the lands of NSW. The collective title for a professional group of non-clinical and clinical workers, whose role is purposeful in its work with Aboriginal and/or Torres Strait Islander peoples, and which is filled by Aboriginal and/or Torres Strait Islander peoples to support the delivery of care with the cultural safety of the patients/clients/consumers as part of the patient journey. A NSW role title which in some Australian states or territories may be referred to as Aboriginal and Torres Strait Islander Liaison Officers. This is a non-clinical role in the clinical interface between consumers and clinicians. Refers to the First Nations Peoples of Australia. Australian Bureau of Statistics. Aboriginal Health & Medical Research Council. Australian Institute of Health and Welfare. Scheme in the Australian healthcare system whereby a doctor bills Medicare directly for consultation services xix

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CALD Centrelink

CR DoCS

ENT FACS

Indigenous

Koori

NDIS OECD PBS

Abbreviations and Terms

provided and accepts the Medicare benefit as full payment. Culturally and Linguistically Diverse. Australian Government, Services Australia program that delivers social security payments and services to Australians. Case Report (educational case reports submitted as part of a course). Department of Community Services (continues to be used to refer to child protection services involvement). Ear, Nose and Throat. New South Wales Department of Family and Community Services (referred to by healthcare professionals in relation to child protection services for abuse and neglect but also in relation to the provision of government supports. This Department has been renamed to ‘Communities and Justice’). An Australian Commonwealth Government term used to collectively refer to Australia’s Aboriginal and Torres Strait Islander peoples. “In Victoria, Aboriginal people refer to themselves as Koori. It is a term that is shared with other Aboriginal groups from New South Wales (NSW). A multidimensional relationship exists between the Aboriginal groups of the Murray Darling (central NSW) Basin, the Goulburn River Basin (Central Victoria) and the Murray Delta (South Australia).” https://www.slv.vic.gov.au/search-dis cover/explore-collections-theme/koorivictoria. National Disability Insurance Scheme. Organisation for Economic Co-operation and Development. Pharmaceutical Benefits Scheme: an Australian Government program that provides subsidised prescription drugs to

Abbreviations and Terms

Australian residents (and foreign visitors covered by a Reciprocal Health Care Agreement). Social Determinants of Health. Sydney Child Health Program.

SDH SCHP

Australian States and Territories NT QLD NSW ACT VIC SA WA TAS

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Northern Territory Queensland New South Wales Australian Capital Territory Victoria South Australia Western Australia Tasmania

List of Tables

Table 2.1 Table 4.1 Table 4.2 Table 4.3 Table 4.4 Table 4.5 Table 4.6 Table 4.7 Table 4.8 Table 4.9 Table 4.10 Table 4.11 Table 4.12 Table 4.13 Table 4.14 Table 4.15 Table 4.16 Table 5.1

Analytical processes adopted . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Patient characteristics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Social determinants of health themes and sub-themes under each SDH . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . SDH theme: crime and safety . . . . . . . . . . . . . . . . . . . . . . . . . . . . Characteristics of abuse and response to abuse . . . . . . . . . . . . . . Characteristics of parental/carer neglect and response to neglect . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Characteristics of abuse and neglect experienced by the same children and response . . . . . . . . . . . . . . . . . . . . . . . . SDH theme: education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . SDH theme: employment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . SDH theme: food environment . . . . . . . . . . . . . . . . . . . . . . . . . . . SDH theme: health systems and services . . . . . . . . . . . . . . . . . . . SDH theme: housing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . SDH theme: secondary consequences of SDH . . . . . . . . . . . . . . . Number of children with mental health concerns by age . . . . . . . SDH theme: social environment . . . . . . . . . . . . . . . . . . . . . . . . . . Lack of parental involvement in children/young people’ lives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . SDH theme: transport . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Victims and nature of violence . . . . . . . . . . . . . . . . . . . . . . . . . . .

16 31 34 35 37 38 41 43 46 48 51 60 62 62 65 66 71 84

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Chapter 1

Introduction

The true measure of a nation’s standing is how well it attends to its children – their health and safety, their material security, their education and socialization, and their sense of being loved, valued, and included in the families and societies into which they are born. [1, p. 1]

1.1 Children and Young People’s Health and Wellbeing Through Different Lenses Children and young people are particularly susceptible to their rights being violated [2], and there exists, almost universally, a notion that childhood is a special time, and that children ought to be offered disproportionate protections, as well as opportunities, commensurate with their lack of agency and responsibility [3]. In the same breath, however, we acknowledge that this ideal scarcely represents the world and the conditions millions of children and young people actually live and grow up in [4]. Irrespective of the lens through which we examine access to healthcare and other social structures to achieve as healthy and full a life as possible for children and adults alike, the conclusions always arrive at the same point: that investment in health and wellbeing needs to be multi-dimensional and focus on developing equity in a range of areas of life starting from early life [5]. Public health experts, peak bodies, and researchers have dedicated many years to explaining to governments and policy makers the underlying causes and solutions to health inequity [6–11] and the fact that health equity can only be achieved by creating: “…an enabling society that maximises individual and community potential” [12, p. 20] and that putting “fairness—social justice—at the heart of all policy-making and health would improve and health inequalities diminish” [5, p. 149]. In its 2020 Position Statement on Social Determinants of Health 2020, the Australian Medical Association highlights the segments of the population most impacted by social determinants of health, urges a multidisciplinary approach to addressing health inequity, and highlights the urgency of doing so giving emphasis to the needs of Aboriginal and Torres Strait Islander peoples [13]. © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_1

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The global/social justice lens acknowledges that children and young people are often victims of structural injustice which perpetuates through generations unless collective action at all levels of government and society is consciously taken to rectify entrenched societal imbalances of power and privilege [14]. Structural injustice is a dynamic system of social processes, conventions, and practices in which we all participate; these processes, conventions and practices systematically deprive some groups from developing their capabilities and accessing opportunities but promote the development of capabilities and opportunity for others through preferential treatment promoted in existing structures [15, 16]. The lack of opportunity some groups face also consequentially extends to lack of opportunity to achieve the same health outcomes as others living within the same system [17]. Only in recent years have medical associations acknowledged the hugely detrimental impact that structurally embedded racism exerts on health inequity [18]. More recently, the American Medical Association openly declared that it recognises and condemns racism [19] and has committed to contributing to structural changes to eradicate its impact [20]. Others have developed a sufficiency theory of social justice and, like many, conceive of social justice as the moral bedrock for public health [21]. This conception of social justice focuses on key areas of life such as health, respect, the capacity to develop meaningful personal attachments, and personal security, with people having the chance to develop a sufficient level in each of the dimensions to achieve a ‘decent minimum for the worst off’ (p. 55) to achieve self-determination rather than achieving equality per se in all dimensions [21]. The sufficiency theory of social justice recognises that children’s needs should be given priority, as the ability to develop these dimensions is time-sensitive with some dimensions never having the opportunity to develop if not prioritised early in life [21]. Similarly, public health experts, health professionals, peak bodies, and researchers have long recognised the importance of focusing on early life as a means of reducing the potential for health inequity [2, 5, 6, 13, 22–28]. The human rights approach to healthcare highlights the basic right all humans, including special reference to children, have to enjoy the highest level of health achievable; it also highlights the State’s corresponding responsibility to ensure adults, children, and young people have access to the services they require as well as to living conditions that will contribute to their health and wellbeing [29–31]. While issues relating to the highest attainable degree or standard of health that can be achieved raise significant ethical considerations, such issues are not within the scope of this work. Viewed through a human rights lens, there have been long-standing concerns about Aboriginal and Torres Strait Islander children’s rights in Australia not being upheld to the standard expected or satisfying minimum requirements [32].

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1.2 Understanding the Impact of Health Inequity on Children and Young People It is no longer possible to ignore extensive research that highlights some of the most challenging facts about our societies and the health and wellbeing of children, young people, and adults alike. The World Health Organisation (WHO) [33, 34], and other global peak health bodies [35], which have since adopted this terminology, distinguish between health inequity and health inequality with health inequity arising from differences which are unfair, socially produced, and most importantly, avoidable. The environment we are born into, in which we are raised, and live out our lives (including the social and political structures that shape how we live and how resources and opportunities are accessed) have been found to profoundly impact on children and adults’ health in significant and lasting ways [24, 25, 34–37]. This ‘environment’ includes physical, material, and psychosocial elements of one’s life which have come to be known as Social Determinants of Health (SDH). While there is significant overlap between classifications for SDH, there are also differences [17, 35, 36]; for example, the report Communities in Action: Pathways to Health Equity [17] regards “income and wealth” as a social determinant of health, an approach we also adopt in this work. Others, however, have suggested that unequal income distribution may not be a health determinant per se but rather a factor that strengthens other “causal processes (known and unknown) through which social class imprints itself on people throughout life” [38]. Health inequities are often described in terms of: ‘health disadvantages’ experienced by some members of society or some countries compared to others; ‘health gaps’, which relate to the chasm between the disadvantaged and those not disadvantaged; and ‘health gradients’, which relate to the progressively worse health outcomes individuals experience as they experience life further down the socioeconomic ladder [34]. In the Longitudinal Study of Australian Children, Nicholson and colleagues [39] found that both physical and developmental health inequities became evident within the first year of children’s lives. In fact, children in all age groups examined (0–1; 2–3; 4–5; 6–7 years of age) displayed poorer physical and developmental health as a result of their exposure to socio-economic disadvantage. These authors highlight the importance of ascertaining the age-related patterns of physical and developmental outcomes within children’s developmental periods [39]. Poor physical and developmental outcomes may become evident ‘only when a certain level of disadvantage is exceeded’—threshold effects; may display ‘linear declines with increasing disadvantage’—gradient effects; or may display ‘progressively stronger declines with increasing disadvantage’–accelerating effects [39]. Understanding the nature of these effects forms part of the justification for action and guides such action but a less than complete understanding of the complex causation should not cripple our attempts to address social structures that directly or indirectly disadvantage some groups. Significant income disparities have been associated with devastating health and social outcomes ranging from issues that impact on children directly (infant mortality,

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low birth weight, wellbeing, teenage pregnancy, and educational attainment) or indirectly as phenomena existing in the environment in which they are raised (drug abuse, violence, including homicides, incarceration, social stress) [38]. The impact of income disparities on mental health has been analysed with a range of findings put forth: a 2012 Australian study concluded, “…income inequality does not affect mental-health outcomes…” [40, p. 15]; a 2015 study found, “The body of evidence on income inequality and health points strongly to a causal connection”, which also included mental health [38, p. 323]; and a 2017 study concluded “…the association of income inequality, as a categorical variable, with any mental health problem and with depressive disorder were significant, albeit small (0·06 and 0·12, respectively)” [41, p. 560]. Even though there is disagreement in the findings, there is unanimous agreement that income disparities are associated with “other undesirable outcomes” [40, p. 15], even if this is a significantly milder acknowledgment than appropriate. In fact, it has been estimated that if the Gini coefficient1 were reduced below 0.3 in 30 OECD countries, the deaths of more than 1.5 million people aged 15–60 years could be prevented [38]. Pickett and Wilkinson warn, “Adopting too high a standard of evidence may mean that it is never considered strong enough” [38, p. 324]. Beyond the impact of SDH on health and wellbeing, it has been suggested that certain groups of children in Australia and New Zealand (and beyond these jurisdictions [42, 43]) are particularly vulnerable to the impact of health inequities [44]. Such groups include Aboriginal and Torres Strait Islander children, Maori children, refugee and asylum seeker children, children from culturally and linguistically diverse (CALD) backgrounds, including Pacific Islander children in NZ, children living in rural and remote communities, children living in out-of-home care, children whose lives are marked by poverty, incarcerated children/young people, and children with disabilities [44]. Other studies and reports support this, including the National Health and Hospitals Reform Commission [45] but it is important to note a clarification included in the NSW Health and Equity Statement 2004, [46, p. 8]: Belonging to one or more than one of the following groups2 does not automatically make someone disadvantaged or more vulnerable to poorer health but, due to the impact of multiple levels of disadvantage, it can increase the risk of poorer health outcomes.

This is an important point to consider, as membership of a particular such group could be misconstrued as the causal factor for poor health and social outcomes. Such misconceptions can lead to inappropriate prioritization of issues as well as inappropriate actions to resolve significant health inequities. Numerous justifications have been repeatedly put forth for urgent action to reduce health inequities based on public health, economic, and moral considerations. Health inequity has a devastating impact on child health, the effects of which persist into adulthood if not addressed via appropriate targeted policies and interventions; on the other hand, there are considerable economic gains, boosted, in part, by greater 1 The most widely used measure of economic disparities, the Gini coefficient, gives a figure between

0 and 1, where 0 means complete economic equality (i.e. equality in income distribution) and 1 means complete economic inequality. 2 The ‘following groups’ referenced are similar to those identified in the previous statement.

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labour productivity resulting from all children achieving the level of health of more advantaged children [24, 35, 47, 48]. Furthermore, there is robust evidence to suggest that investing in housing, transport, and neighbourhood environments results not only in improved health and wellbeing and improved future opportunities but also in healthcare expenditure savings [49]. Substantial evidence also exists in relation to the economic return from education policies aimed at providing all children with better educational opportunities, especially, where early childhood education is concerned, but also for older students [49]. The moral dimension of issues of social injustice has long been identified by professionals and organisations in the field, including the World Health Organisation’s Commission on Social Determinants of Health, which has forcefully highlighted our moral obligation to take action [50, p. 1661]: Social injustice is killing people on a grand scale, and the reduction of health inequities, between and within countries, is an ethical imperative.

This section has provided a very brief overview of health inequity and how the social determinants of health impact on the lives of children and their families in Australia and the world over. While we have referred to Aboriginal and Torres Strait Islander children, the section does not do justice to the historical issues which have contributed considerably to the health of First Nations Peoples in Australia. We acknowledge that Aboriginal and Torres Strait Islander Peoples have been subject to institutional racism and structural injustice since Europeans first arrived on the shores of their land and that their health, culture, and futures have been adversely and unjustly affected by avoidable actions and treatment over centuries [51, 52]. It is now time to make substantial and meaningful structural changes both in Australia and other Western nations where First Nations Peoples have been subjected to similar treatment and the ensuing social and health outcomes. Such structural changes will also benefit other children and families who experience disadvantage that impacts on their health and wellbeing.

1.3 Significance of Research The current study differs from most studies that focus on the impact of SDH on children/young people. The aim of this study was to identify the depth and breadth of health inequities that Australian children and young people face through the analysis of Case Reports (CRs) written (for assessment purposes) by healthcare professionals who had treated children/young people whose social circumstances were identified as impacting on these children/young people’s health. The study objectives included: 1. 2.

Documenting how ‘health inequity’ was understood by these healthcare professionals; Mapping patterns of health inequity identified via analysis of the CRs;

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Identifying the solutions implemented by healthcare professionals to provide an understanding of methods used to address such inequities in clinical practice; and Identifying outcomes for paediatric patients following the implementation of solutions.

The value of this research lies, in part, in the fact that it adopts a social constructionist research paradigm, i.e. a contextualized approach to examining paediatric patients in order to understand these children and young people’s experience in the healthcare setting and the factors in their lives that influence and impact on their health and wellbeing in a positive or negative way as described by the healthcare professionals who attended to their medical needs (see Chap. 2). The literature on health inequities abounds both in relation to adults and children/young people. This research demonstrates how health inequity is actually experienced by Australian children and young people and how it is actually dealt with by some healthcare professionals (primarily doctors) in the clinical setting. More importantly, however, this research forces us to forego focusing dispassionately on statistics and facts about health inequity and to instead focus on what the life of real children and young people experiencing health inequity is like. These very children and young people we have considered in this research will either flourish despite the setbacks they have experienced or will suffer throughout life, as a result of the SDH prominent in their lives. The long-term impact of these patients’ interaction with the healthcare professionals is unknowable but we hope that some lasting positive effect may have been gained, as a result of the extensive efforts and supports made available to these patients and their families in the vast majority of cases examined. While the research has focused on an Australian cohort of paediatric patients, readers from around the world will recognise the issues highlighted, as well as the solutions health professionals adopted to combat the effects of health inequity for their patients and their families. The lives of disadvantaged children, young people and their families may differ slightly from context to context, but there are common, often shocking, threads that unite all children and young people in numbers far greater than is acceptable in any society. This research gains particular significance, as it is being published during the COVID-19 pandemic which has demonstrated in stark terms that during pandemics health inequity not only impacts on those disadvantaged more acutely but also on the advantaged; in order to keep the whole community safe, governments in affluent countries (in cases where action has been responsibly taken) have had to race against time to address social inequities (e.g. homelessness, inability to stay home from work even if symptomatic) that were placing whole communities at risk (see for example [53, 54]). A view into the lives of these children, young people, and their families may perhaps afford a clearer understanding of the impact of structural injustice and the resulting health inequities on real people’s lives to motivate us to contribute to the long-awaited social changes communities are now demanding on a global scale [55– 57]. It is important at this point to also note that the population of Australia is relatively small compared to other nations with Australia’s population being 25,687,041 people

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on 30 June 2020 (and with the annual growth being 321,300 people) [58]. Further, Australia’s Aboriginal and Torres Strait Islander peoples comprise approximately 3.3% of the population [59].This will need to be borne in mind throughout the reading of this book but particularly during the Discussion chapters.

1.4 Source of Data Health Inequity Case Reports (CRs) were prepared as part of the assessment structure for the Sydney Child Health Program (SCHP) (formerly Diploma in Child Health (DCH and IPPC)),3 an educational program available to doctors, nurses, and allied healthcare professionals from the Sydney Children’s Hospitals Network in affiliation with the University of Sydney. The vast majority of students attending this course over the years has been doctors. The focus of these CRs is on real clinical encounters with an infant, child, or young person for whom health inequity had a significant impact on their health, as assessed by the healthcare professional. The CR was an essay of approximately 1000 words whose sections were predetermined (Definition of Health Inequity; Case Description; Case Discussion; Conclusion; References) but with some variation in relation to the articulation of challenges encountered and solutions adopted. At the time the CRs were sourced (2015), the CR comprised 10% of each SCHP participant’s final mark. All submissions by participants in the program are the property of the Sydney Child Health Program (SCHP) and may be used for education, advertising, course development or other purposes, with acknowledgement.

1.5 Definitions Used in the Analyses Three terms relating to data in the CRs require some clarification to ensure that references to these do not create confusion. Health condition was defined by the research team/authors as the primary diagnosis at presentation to the medical professional. Patient Background was extracted from the case studies when mentioned. The main designations we adopted in the study were ‘Aboriginal & Torres Strait Islander’, ‘Mixed’ when the child had parents from differing ethnicities, ‘Immigrant’ where this was stated, and ‘Other’ was allocated when no background was cited. It was assumed that the majority of children in this category, who were not ‘Immigrant’ or ‘Mixed’, were non-Indigenous Australians. Finally, the State/Territory mentioned in the CRs related to the medical professionals’ State/Territory of residence. In many cases, the State/Territory also related to that of the patient, as indicated in the case data, but because the child/young person’s treatment location was not always mentioned,

3 See

https://magga.org.au/about-us/course-outline/.

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we cannot definitively claim that the listed State/Territory coincides with the child’s actual place of presentation. It is important to note that the themes identified relate to the data available and do not in any way reflect views held by the researchers. Therefore, themes such as Lack of nutritional awareness, Parental lack of education cited, Lack of parental involvement and Lack of support networks simply point to something deemed desirable but not present. At no point in this or any other chapter of this book do we cast blame on carers; to do so would be to lack an understanding of the intergenerational impact of social determinants of health. We are dispassionate about the facts but enraged, troubled, and disappointed about the circumstances that facilitate their existence. This work is not the solution to health inequity but we hope it forcefully reminds us why concerted efforts must urgently be made by all levels of government and society to address health inequity. Its aim is to bring to the fore what really matters and the reason why so many engage in this field: the children and young people whose lives are scarred by social circumstances that could be prevented, or at least ameliorated, with early intervention.

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the social determinants of health. The Lancet, 2008. 372(9650) p. 1661–1669 DOI: https://doi. org/10.1016/S0140-6736(08)61690-6; Available from: http://www.sciencedirect.com/science/ article/pii/S0140673608616906. Australian Law Reform Commission, Recognition of Aboriginal Customary Laws (ALRC Report 31). Tabled 12 June 1986. Human Rights and Equal Opportunity Commission, National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from Their Families (Australia). Bringing Them Home: Report of the National Inquiry into the Separation of Aboriginal and Torres Strait Islander Children from Their Families [Commissioner: Ronald Wilson] 1997, Sydney: Human Rights and Equal Opportunity Commission. Xafis, V., ‘What is Inconvenient for You is Life-saving for Me’: How Health Inequities are playing out during the COVID-19 Pandemic. Asian Bioethics Review, 2020 p. 1–12 DOI: https://doi.org/10.1007/s41649-020-00119-1. Xafis, V., G.O. Schaefer, M.K. Labude, Y. Zhu, and L.Y. Hsu, The Perfect Moral Storm: Diverse Ethical Considerations in the COVID-19 Pandemic. Asian Bioethics Review, 2020. 12(2) p. 65-83 DOI: https://doi.org/10.1007/s41649-020-00125-3; Available from: https://doi. org/10.1007/s41649-020-00125-3. Sugrue, T.J., 2020 is not 1968: To understand today’s protests, you must look further back. National Geographic, June 11 2020; Available from: https://www.nationalgeographic.com/his tory/2020/06/2020-not-1968/. Davies, L., Editorial: Australia not immune from US-style racial tension, in The Sydney Morning Herald. June 2 2020. Haddad, M., Mapping anti-racism solidarity protests around the world. Al Jazeera, 7 Jun 2020. Accessed: 30–01–21; Available from: https://www.aljazeera.com/news/2020/6/7/map ping-anti-racism-solidarity-protests-around-the-world. Australian Bureau of Statistics. National, state and territory population. June 2020 Last accessed: 22/02/2021 Available from: https://www.abs.gov.au/statistics/people/population/nat ional-state-and-territory-population/jun-2020. Australian Bureau of Statistics. Estimates of Aboriginal and Torres Strait Islander Australians. 31 Aug 2018 Accessed 12/02/2021; Available from: https://www.abs.gov.au/statistics/people/ aboriginal-and-torres-strait-islander-peoples/estimates-aboriginal-and-torres-strait-islanderaustralians/latest-release.

Chapter 2

Methods and Methodology

2.1 Introduction In the previous chapter, we provided background information relating to the source of the data analysed. In this chapter we discuss the theoretical considerations that underlie the analysis of the data; this is an important aspect of qualitative research as the researchers’ theoretical positions influence the manner with which they approach the data and conduct their analyses. This chapter also provides details of the sampling method employed, the analytical method adopted, as well as details of the generation of an amended version of a published SDH framework which we employed to structure the findings of this research. For those researchers used to engaging in quantitative research, qualitative research may seem elusive. The purpose and diversity of qualitative approaches and the complexity of qualitative analyses is not always fully appreciated or understood. For this reason, we have provided detailed information of the various stages engaged in during the extensive analytical phase of this research, in a tabular format for ease of reading. The chapter also provides an opportunity to declare our position on certain qualitative conventions and to provide our rationale for deviating from these in ways that we believe improve the rigour of the work undertaken. Finally, we provide a description of the processes we engaged in to ensure quality and rigour in the analytical processes and a description of how we resolved differences.

2.2 Theoretical Paradigm Guiding Analysis The research paradigm within which this research was developed was moderate social constructionism [1, 2], as we sought to explore the social reality of the paediatric patients through their lived experience, as reported by healthcare professionals. Moderate social constructionism does not reject the notion of a reality © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_2

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outside the consciousness of the individual but posits that all human experience is ‘moulded’ within a particular society with its social and cultural norms and its customs, its language, and its particular social structures [1–3]. Hence, meaningful reality is created, modified, and sustained through human interaction with the world and social structures within which people live. The reductionist notion that social structures, such as poverty and crime, can be explained by lower-level human existence/experience, such as psychological and biological factors [1] alone, is rejected as not only unhelpful but also potentially dangerous because it can lead to further inequities. During the analysis of the data it was identified that there were similarities between the thematic codes identified and the Social Determinants of Health framework adopted in the Communities in Action: Pathways to Health Equity [4]. That framework was adopted in its broad structure but necessarily adapted to account for the slight variation and greater granularity in our findings. Although we were not able to examine the data in the context of communities to the extent that we would have liked, which is central to the Social Determinants of Health framework adopted in the Communities in Action: Pathways to Health Equity, it was clear that healthcare professionals’ focus on treatments and supports provided were often rooted in the communities where patients lived. We acknowledge here that the framework adopted due to its congruity with the data analysed differs from frameworks that would be better suited to Aboriginal and Torres Strait Islander Peoples. The following quote clearly articulates differences in conceptions of social determinants of health: “The cultural knowledges and social practices of Aboriginal people, including the focus on family/community, the social care of others and the human priorities that differ from Western society, clearly suggest that social determinants models for mainstream Australians are inadequate in the Koori context” [5, p. 12].

2.3 Sampling Method and Data Quality At the time of sourcing, the CRs for the SCHP were submitted in a de-identified manner (in terms of patient) by participating healthcare professionals throughout Australia and were compiled as they arrived at the Sydney Child Health Program into bundles of 20 for marking. Initially, 100 of these CRs, were to be analyzed but, as qualitative researchers will appreciate, no calculations such as power calculations employed in quantitative research, can be made in qualitative research. Based on this figure, five randomly selected bundles of 20 CRs from the 2015 cohort were provided to VX and AF in a de-identified manner for the purpose of analysis. It became evident during the initial analysis that the data were rapidly risking becoming unmanageable despite the use of NVivo qualitative data analysis software [6] to assist with data management. An excessively large data corpus is known to impact on the quality of the analysis [7] and we recognised we ran the risk of compromising our analysis if we attempted to include all 100 CRs. It was therefore decided that the analysis would be limited to 60 CRs, which did nevertheless yield a very substantial data

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set. Comprising the final sample were the first 60 CRs accessed in the bundles of 20. One of the CRs, however, related to treatment provided overseas1 so this was excluded and the 61st CR was accessed to take its place. During analysis, it was noted that one case related to a baby as well as the adolescent mother who was herself treated. Therefore, technically, the sample comprises 61 cases. Each CR was taken to represent the child/young person about whom the CR was written. Therefore, even though the research did not involve direct data collection, each of the children/adolescents in the CRs is ultimately the ‘subject’. Given that the research team did not collect the data directly due to the nature of the data used, there was no way to control the quality of the data available for analysis. In almost all cases, however, the data was deemed to be of a high quality, aided by the fact that the material provided had been submitted for assessment purposes.

2.4 Methods of Analysis The nature of this qualitative research was exploratory, as the lived experience of actual paediatric patients and the mapping of health inequity impacting on these patients’ lives has never previously been examined. This novel approach was achieved by thematically analysing written accounts provided by healthcare professionals attending to the paediatric patients’ medical and social needs, which impacted on their overall health and wellbeing. The research was also exploratory in a second sense; the researchers did not know what they would encounter in the data, as it had already been collected for educational purposes, unlike qualitative research where the researcher becomes increasingly familiar with the data as s/he collects it. Qualitative research analysis varies widely and often requires numerous iterative cycles which may move between data-driven and theory-driven approaches. While thematic analysis is very extensively used in much qualitative research, the approach is rarely reported in sufficient detail [8]. We have attempted here, and in the chapters reporting on the findings, to present our work in as clear and comprehensive a manner as possible. We therefore recorded the analytical stages and the steps within each analytical stage in Table 2.1 to provide a detailed description of the analytical processes we adopted in this research stressing the inherent recursive nature of the analytical process. The same analytical process was adopted for the analysis of the second area of enquiry, i.e. the challenges faced, the solutions adopted, and the outcomes reported for the health and wellbeing of the patients and their families seen to by healthcare professionals. While the initial coding and grouping were done in NVivo [6], at later stages we developed excel spreadsheets with the raw data extracted under the various codes along with age, sex, and medical condition at presentation. 1 Participants in the SCHP are requested to write in around 1000 words about a case in Australia but

if healthcare professionals have no such experience in Australia, they are permitted to write about a case from their home country.

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Table 2.1 Analytical processes adopted Stages

Steps taken during analytical stages Step 1

Step 2

Step 3

Pre-analytical stage Broad a priori These broad objectives framework developed loosely guided initial by objectives of study thinking Stage 1 data driven within a broad reporting structure

Familiarisation with data via four initial cases

Reading through and then initial preliminary multiple line-by-line inductive coding within a medical coding filter influenced by the standard medical reporting e.g. Issue: i.e. what caused this child to present; Medical History; Examination; Challenges; Health Inequity Identified

Cross checking of all cases, discussion of preliminary codes, consensus decision-makinga and discussion of preliminary codes with research team at meetings

Stage 2 data driven

Continued to identify codes inductively

Started developing a hierarchical tree structure and examining similarities and differences between codes

New codes created to capture groupings

Stage 3 data driven

Examined codes and generated themes

Continued to check for consistency in interpretation

Reformulation, sorting and shifting of codes as required

Stage 4 data driven

Thematic maps created to examine themes, reviewed them and examined associations

Themes collapsed following examination of concepts and discussions

Stage 5 theory-driven and data driven

Identified similarity between emerging themes and a published Social Determinants of Health framework in Communities in Action: Pathways to Health Equity [4]b

Organised themes into pathways framework

Adapted pathways framework to add themes identified in the data and refined hierarchies developed by inclusion of subthemes

(continued)

2.4 Methods of Analysis

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Table 2.1 (continued) Stages

Steps taken during analytical stages

Stage 6 theory-driven and data driven

a These

Step 1

Step 2

Step 3

Developed visual representation of revised social determinants of health framework across all participants and themes

Continued to check hierarchies in revised social determinants of health framework

Re-grouped by collapsing themes or subthemes into a single theme/sub-theme where appropriate

were features and processes adopted throughout the analyses pathways framework

b Hereafter

Much qualitative research abstracts from the details relating to specific participants in order to ultimately engage in theoretical reflections or generate theories, for example. However, the analyses in this work aimed to provide a rich description of specific experiences, events, and states of being. The analysis therefore remained ‘close’ to the individual children/young people involved in the CRs (that is, we continue throughout to refer to one child experiencing this health or social issue, the other experiencing that health or social issue) so as to remain close to the facets of their experience impacting on their lives. Furthermore, a way in which this analysis differs from ‘traditional’ qualitative reporting of findings is the way ‘prevalence’ is dealt with. There are differences in practice among qualitative researchers relating to the reporting of ‘prevalence’ of the phenomena examined [8]. Typically, qualitative researchers employ words and phrases such as ‘many’, ‘the majority’, ‘a number of’, ‘some’ etc. as the phenomenon they are describing is viewed to be of greater relevance than the number of individuals it relates to. As some qualitative researchers suggest [9], however, these descriptors are devoid of any meaningful content and simply serve to assure the reader that a particular finding was indeed derived from the data. In this work, reporting on the prevalence of themes identified was deemed crucial to the analysis of this data given the focus of the research and its objectives; hence, to give a sense of the extent to which each of the themes impacted on the children/adolescents, many analyses are accompanied by figures representing the numbers of children/adolescents affected across the entire data set. We believe that reporting on the prevalence of themes also contributes to the rigour of the analytical methods and the ability to check the veracity of the claims made. Finally, we borrow from quantitative research in our handling of the demographic data relating to the cohort, particularly necessary given the large number (for qualitative research) of patients considered. All analyses were double checked and extensive discussions were held to address issues of inter-rater reliability [10]. Periodically, the analyses were checked or reviewed by the rest of the research team and further discussions were held where required. Other members of the team contributed to the analysis of specific sections and these were also always double-checked and supplemented. Where issues arose,

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consensus decision making was further engaged in until differences were resolved by referring back to the original data. Indeed, throughout the analytical process, meticulous care was taken to return to data repeatedly to ensure reporting of accurate details from each case. When we did make observations beyond the data, extrapolation was supported by surrounding data. Following re-sorting, shifting, and re-synthesizing, the data was analysed under four broad themes: Social Determinants of Health, Challenges, Solutions Adopted, Health and Other Outcomes. The Social Determinants of Health theme involved very extensive separate analyses, which comprised the greatest part of the entire research project. These analyses were done using a framework which we adapted from the pathways framework to map all the patients’ health and social circumstances, which healthcare professionals described in their CRs as impacting on the patients’ health and wellbeing. The analyses involved not only identifying the social determinants of health but also several sub-themes under each SDH (see Chap. 5, Table 5.3). Additional data analysed related to the demographic and health characteristics of the sample of children and young people (see Chap. 4, Table 4.2). The extensive analyses undertaken in this research resulted in mapping the SDH impacting on each of the children/adolescents as well as the mapping and analysis of each of the social determinants across the whole cohort of children/adolescents (see Chap. 3 and Overview Table-Social Determinants of Health by Case). It might be suggested that examining the SDH separately is unhelpful given that we recognise that health inequity results from the complex interplay between these very facets of one’s life. It may, for example, be suggested that a more appropriate methodology would be something akin to intersectionality [11]. In this work, we have been guided by the data we had access to, i.e. reports pertaining to healthcare professionals’ understandings of the impact of health inequity on their patients, written for academic purposes. To systematically examine the inter-relationship, influences, impacts and drive reliable conclusions is a valid consideration but it would be inappropriate to attempt to draw such conclusions from this data.

References 1. Burr, V., Social Constructionism, in International Encyclopedia of the Social & Behavioral Sciences (Second Edition), J.D. Wright, Editor. 2015, Elsevier: Oxford. p. 222–227. 2. Elder-Vass, D., The Reality of Social Construction. 2012, Cambridge, UNITED KINGDOM: Cambridge University Press. 3. Edley, N., Unravelling Social Constructionism. Theory & Psychology, 2001. 11(3) p. 433-441 DOI: https://doi.org/10.1177/0959354301113008; Available from: https://doi.org/10.1177/095 9354301113008. 4. National Academies of Sciences Engineering and Medicine, Communities in Action: Pathways to Health Equity, ed. J.N. Weinstein, et al. 2017, Washington, DC: The National Academies Press. 582. 5. Anderson, I., F. Baum, and M. Bentley, eds. Beyond Bandaids: Exploring the Underlying Social Determinants of Aboriginal Health. Papers from the Social Determinants of Aboriginal Health Workshop, Adelaide, July 2004. Cooperative Research Centre for Aboriginal Health: Darwin.

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6. NVivo Qualitative Data Analysis Software. QSR International Pty Ltd. Version 11, 2016. 7. Pope, C., S. Ziebland, and N. Mays, Qualitative research in health care: Analysing qualitative data. BMJ, 2000. 320 DOI: https://doi.org/10.1136/bmj.320.7227.114; Available from: https:// doi.org/10.1136/bmj.320.7227.114. 8. Nowell, L.S., J.M. Norris, D.E. White, and N.J. Moules, Thematic Analysis: Striving to Meet the Trustworthiness Criteria. International Journal of Qualitative Methods, 2017. 16(1) p. 1609406917733847 DOI: https://doi.org/10.1177/1609406917733847; Available from: https://doi.org/10.1177/1609406917733847. 9. Braun, V. and V. Clarke, Using thematic analysis in psychology. Qualitative Research in Psychology, 2006. 3(2) p. 77–101 DOI: https://doi.org/10.1191/1478088706qp063oa; Available from: https://www.tandfonline.com/doi/abs/https://doi.org/10.1191/1478088706qp 063oa. 10. Barbour, R.S., Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ, 2001. 322(7294) p. 1115 DOI: https://doi.org/10.1136/bmj.322.7294.1115; Available from: http://www.bmj.com/content/322/7294/1115.abstract. 11. Rice, C., E. Harrison, and M. Friedman, Doing Justice to Intersectionality in Research. Cultural Studies ↔ Critical Methodologies, 2019. 19(6) p. 409–420 DOI: https://doi.org/10.1177/153 2708619829779; Available from: https://doi.org/10.1177/1532708619829779.

Chapter 3

Overview of Social Determinants of Health Findings and Vignettes

3.1 Introduction This chapter provides ‘a bird’s eye view’ of all the patterns identified in relation to the SDH. This was achieved by developing an overview Table titled Social Determinants of Health by Case which assisted in mapping all the patients on one axis and all of the SDH identified as impacting on their health and wellbeing on the other axis (see Table below). Having an overview of all the SDH identified as well as many of the additional sub-level themes and seeing how these relate to each of the children/young people provides an appreciation of the great complexity and interactions between the enormous variety of factors at play which contribute to and perpetuate health inequity. The analysis that follows in Chap. 4 focuses on these factors. The life of each and every child/young person who has unwittingly contributed to this research is incredibly valuable and worthy of close consideration. In this work, however, it was impossible to also engage in analysing each of the individual cases. We therefore present in this chapter vignettes of the lives of six of the children/young people so that the reader may appreciate the complexity of these children/young people’s lived experience, as reported by the healthcare professionals who attended to them in the clinical context. We wanted to present the ‘whole’ of the child/young person, to ‘introduce’ you to them as persons with meaning and consequences behind everything they experience before dissecting their experiences and lives. The selection of cases was guided by an attempt to provide an array of foci and present children/young people experiencing different circumstances to give the reader an appreciation of the range of issues these children/young people faced. Why six vignettes and not seven or eight or ten? The response is as unimaginative as responses get; we were constrained by pragmatic considerations relating to publication requirements.

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_3

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3.2 Overview of Social Determinants of Health Findings by Case Following the identification of themes (i.e. SDH) and sub-themes, the findings were recorded in tabular format along two axes; each of the patients is represented numerically on the vertical axis and each of the themes (i.e. SDH) and subthemes are represented on the horizontal axis. When a theme/sub-theme was identified as relating to a particular child/young person, the relevant box corresponding to the SDH/sub-theme was ticked. Hence, readers can ascertain at a glance both within-case patterns (i.e. how a specific child/young person was impacted by several SDH) but also patterns across the entire data set, i.e. the existence of specific SDH/sub-themes and their prevalence across cases (see Table below).

3.3 Vignettes Below we present six of the 61 children/young people who sought medical attention. They are Angela, Gloria, Daisy, Gordon, Olivia, and Ben and they represent a range of backgrounds and life circumstances even though there are common threads. The names are not their own but the stories are. Angela When she presented, Angela was a 14-year-old girl with a complex set of family circumstances. She presented with her parents because they were concerned about her prolonged decreased oral intake, excessive exercising, and her depressed mood. Angela’s situation was further impacted because her condition was creating tension in the family. It came to light when she spoke to healthcare professionals privately that Angela’s anorexia nervosa and depression were linked to her exposure to inappropriate touching by an older member of the extended family who had access to her in the home. Immigration appears to have created numerous challenges for the family and for Angela herself. She had experienced racial discrimination in her earlier years of immigration, her family suffered financial strains and the family unit was ultimately disrupted by parental separation. The complexities of differing cultural views relating to mental illness also impacted Angela in a significant way; her parents conceptualised their daughter’s mental health issues as a condition that could be treated pharmacologically rather than via a biopsychosocial treatment framework. In addition, unaware of the healthcare system in a new country and the services available to assist their daughter, the parents delayed bringing Angela’s struggles to healthcare professionals’ attention at an earlier stage.

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The healthcare staff used interpreters and engaged with the family extensively to build rapport and trust. Family therapy led to the parents gaining a better understanding of their daughter’s condition and adapting their parenting style to assist with Angela’s recovery. Support for issues around Angela’s revelations were not mentioned. Gloria Gloria, an infant under 12 months of age at presentation, was born into a family experiencing complex intergenerational health and social circumstances. Her mother was aged 18 when she was born prematurely. Following a month in special care nursery, Gloria had been discharged into the care of her grandmother. There was a strong family history of serious mental health problems and Gloria’s mother had engaged in heavy substance use during the pregnancy. Gloria’s father was only allowed to have supervised visits after she was born because of his history with substance abuse and physical violence. Complicating Gloria’s already difficult life were respiratory problems which resulted in her being brought back to hospital just two days after being discharged because her breathing had worsened again. Before being discharged, Gloria’s grandmother was taught how to use a puffer and spacer to help Gloria’s breathing at home and detailed asthma education was provided. She was also encouraged to prevent her exposure to cigarette smoke and to quit smoking if at all possible. Although substantial diverse healthcare and social supports were provided to assist Gloria and her Grandmother, the complexities of the Grandmother’s life remained a threat to Gloria’s ongoing development and wellbeing. Gloria’s Grandmother faced significant financial difficulties and had limited transport options impacting her ability to transport Gloria for urgent care if needed. Ongoing support to reunite Gloria with her mother was provided and Gloria did spend more time with her mother eventually with hopes of full reunification. Daisy Daisy, a 6-year-old girl, presented to her GP with a history of abdominal pain, diarrhoea and nausea for which she had seen many doctors over the years with no organic cause found. The family were poor, with very limited access to transport and to health services. This exacerbated the significant delay in Daisy’s diagnosis. There was significant discord between Daisy’s parents with her father not accepting that she had a health issue at all. Her mother’s support further fuelled Daisy’s father’s anger leading to psychological and emotional abuse towards Daisy and her mother. There was a family history of mental illness, which also appeared to be affecting Daisy’s parents. The ongoing turmoil increased her anxiety. Finally, Daisy saw a paediatric gastroenterologist but affording the required investigations was still a significant disincentive to discovering the underlying problem. In addition to the gastrointestinal diagnosis she finally received, it was also recognised that she had a significant anxiety disorder.

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Daisy needed help from a dietitian and a psychologist but this was complicated given the ongoing financial difficulties, the relatively distant location, and lack of reliable transportation. The treating doctor repeatedly needed to negotiate reduced cost of investigations and the multidisciplinary interventions that were necessary to return Daisy to health and wellbeing in continuing difficult domestic circumstances. Following her diagnosis and appropriate dietary changes, Daisy’s physical health improved markedly. But Daisy’s school life was also complicated by an apparent lack of appreciation of her health and psycho-social struggles resulting in her unwillingness to attend school. Eventually, her parents separated and a custody dispute ensued. Ongoing psychological help improved Daisy’s confidence and she also eventually changed schools. Psychological support was provided to address her mother’s long-standing mental health problems. Gordon When 15-year-old Gordon was hospitalised in a psychiatric ward after assaulting and threatening family members the complexities of his life were revealed. In addition to his significant mental illness, he also suffers an intellectual disability and chronic substance abuse, which have contributed to pending criminal charges against him. Gordon lives with his father following his parents’ separation when he was a child. His siblings were living with his mother but are now in state care. His father also has significant mental health illness but does not take the required medication and he has a history of substance abuse and was previously involved with the courts. Gordon’s father does not have stable employment and the family experiences poverty. His mother also has a history of substance abuse and mental illness. For most of his life, Gordon had lived in a rural location where services were difficult to access and where he had received no educational support. The family moved to a city to get help with his behavioural issues and he attends a school that can cater for his behavioural needs. Gordon’s medical care has been complicated due to the need for involvement of a wide range of health professionals and agencies and issues with him discontinuing his medications. Both father and son strenuously resist the state intervening in his care. Olivia Olivia was a 15-year-old who was admitted to hospital acutely unwell with extensive cellulitis arising from a one-week-old wound following a fall off a motorbike while intoxicated. She was accompanied by her teenage sister and did not want her parents to be notified. Olivia lived in a women’s refuge after leaving her family life with her father who was separated from her mother; she did not attend school, she smoked, drank alcohol and regularly used cannabis, and she was poor. Her father did visit her in hospital and declared that she was in charge of her own life but Olivia clearly lacked knowledge and understanding about medical care and health issues, as evidenced by the severity of her condition at presentation. While in hospital she was also treated for head lice and received good nutrition. Olivia was

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unaware of the need for a regular GP and did not know how to access affordable health care and resorted to using the Emergency Department when she was ill. Olivia’s illness was treated successfully and she was open to receiving advice on how to access relevant healthcare despite initial hostility upon admission. She was supported with details of a local GP and arrangements were made for her to access a social worker at the refuge. Despite her fractured family life, it was evident while she was in hospital that she had family who cared for her as they visited and kept her company. Ben Ben’s life had already suffered permanent damage at 5 months. He was the victim of parental abuse resulting in bilateral subdural haematomas and there was evidence of rib fractures. When admitted he underwent emergency surgery. His dangerous domestic circumstances led to him being cared for by a relative; a relative who also cared for his siblings and who had neither a home of appropriate size for so many inhabitants nor the financial resources care for them as required. With no support from the parents, minimal English language skills, and no means of transportation, this carer faced difficulties bringing Ben to critically important medical appointments. It was hard to determine whether the carer always grasped the plans for follow-up, especially when no interpreters were available. Ben’s carer was provided with multiple levels of support and many mechanisms to ensure he was able to attend all appointments and access funds needed for his care. The parents were also supported to address issues of violence. Despite these supports though, Ben’s trajectory in life has already been altered. Due to the severity of his injuries, Ben is likely to experience intellectual and learning problems in the future.

3.4 Summary These six vignettes aimed to bring the lives of all 61 children and young people to the fore so the reader remembers throughout the book that these are real children and young people. Real children who we, the researchers, have come to care about as we have analysed their stories. These six children/young people’s lives illustrate the enormous complexity they experience and the multiple health and socio-economic circumstances shaping their lives, which may perhaps continue to impact them throughout their lives. For some, previous action or inaction has already left a permanent imprint on their lives and, for some, their health and wellbeing appear to have been improved as a result of their treatment and engagement with healthcare and other professionals. There are always those children or young people, such as Olivia, for example, whose future is uncertain. Did the support she received on that one occasion have a lasting positive impact on her life or did she become overwhelmed with the circumstances in her life? Did she return to her family or did she enter a foster care home?

3 Overview of Social Determinants of Health Findings and Vignettes

Social Determinants of Health by Case

(con nued)

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Social Determinants of Health by Case

(conƟnued)

3.4 Summary 27

Social Determinants of Health by Case

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Chapter 4

Results of Health Inequity Analyses

4.1 Introduction Having seen an overview of the findings relating to the SDH as well as the vignettes which presented six of the children’s/young people’s stories in Chap. 3, we now turn to the detailed analyses of the SDH. This chapter commences with a presentation of the demographic features associated with this cohort as well as some brief descriptive statistical analyses in order to provide a clear sense of the medical conditions for which patients presented, the various age groups comprising the cohort, the parts of Australia where patients were presumably residing, as well as the patients’ backgrounds. The definitions provided in Chap. 1 are important to bear in mind when considering the cohorts’ demographic features. The chapter then focuses on the analyses associated with the SDH identified as impacting adversely on the health and wellbeing of the children/young people reported on by healthcare professionals to whom these patients had presented for medical attention. We remind readers that the health professionals were reporting on patients in a de-identified manner for the purpose of writing their Health Inequity Case Reports (CRs), as part of their assessment for the Sydney Child Health Program (SCHP) (formerly Diploma in Child Health (DCH and IPPC) (see Chap. 2). The highly detailed and very rich results arising from extensive qualitative analyses aimed at identifying the depth and breadth of health inequity and comprises the bulk of the entire research project. All the SDH identified are presented in tabular form and tables summarizing the findings and the prevalence of each SDH and its sub-themes are presented at the beginning of most sections to provide a context within which the reader considers the findings.

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_4

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4.2 Demographic Characteristics of the Whole Sample Table 4.1 lists the 61 patients identified by age group, health conditions for which they presented, patient’s background, and the State or Territory representing the healthcare professional (and assumed State/Territory of the patient—See Chap. 1 for definitions). Below we provide a summary of demographic details. The female and male ratio was almost even with 32 female patients (52%) and 29 male (48%). The majority of patients were adolescents1 (n = 25) followed by infants (n = 13) young children (n = 11), children (n = 9) and neonates (n = 3). Health conditions: There was a wide range of health conditions for which patients presented (Table 4.1). The majority of all presentations related to mental health concerns (36%) with the highest number concentrating around adolescents aged 12– 18 years (n = 17) and children aged 6–12 (n = 5). The next most common reason for presenting related to respiratory problems (11%) with most patients (n = 7) aged six years old or under. Dermatological complaints prompted presentations in six cases (10%), with children six years or under representing the highest number (n = 4) and only two aged from 12–18 years. One death at child birth resulted from grave neurological issues. States/Territories: The majority of cases analysed (n = 27, 44%) was submitted by medical professionals in NSW. The remaining doctors were from QLD (n = 12), VIC (n = 9), SA (n = 5), WA (n = 4), NT (n = 2), TAS (n = 1) and ACT (n = 1). To the extent that could be confirmed, the majority of the patients also corresponded with the listed States and Territories, as referenced in some of the cases. Patient Background: The background of the majority of children who presented (n = 26, 43%) was not identified and they were therefore designated the descriptor ‘Other’ (assumed to be non-Indigenous Australians). For children whose background was not identified as Aboriginal or Torres Strait Islanders or immigrant or mixed and who were classified as ‘Other’, the associated States were: NSW (n = 14); QLD (n = 5); SA (n = 3); and VIC (n = 4). Over a third of children (n = 24, 39%) were Aboriginal or Torres Strait Islander children. Here it is important to note that Aboriginal or Torres Strait Islander children/young people were over-represented in this cohort. These children were reported in the following States and Territories but it is important to note that, in some cases, the patient and family may not reside in the reported State or Territory: NSW-n = 8; Qld-n = 6; WA-n = 3; Vic-n = 2; NT-n = 2; SA-n = 1, Tas-n = 1; ACT-n = 1. Eight patients (13%) were identified as ‘Immigrant’ and three (5%) were identified as being of ‘Mixed’ background.

1 In

the majority of cases we make reference to children/young people or children/adolescents. On occasion we use ‘children’ as the umbrella term for patients of any age group. We do also sometimes make reference to patients and ‘cases’. The terms used aim to improve readability and do not reflect any value judgments.

4.2 Demographic Characteristics of the Whole Sample

31

Table 4.1 Patient characteristics Age range

Gender

Health condition at presentation

Patient background

State/Territory

Neonates (0–30 days)

Female

Neurology

Aboriginal and Torres Strait Islander

QLD

Female

Obstetric

Aboriginal and Torres Strait Islander

ACT

Female

ENT

Aboriginal and Torres Strait Islander

QLD

Male

Dermatology

Aboriginal and Torres Strait Islander

NSW

Male

Respiratory

Other

QLD

Male

Dermatology

Other

NSW

Female

Respiratory

Aboriginal and Torres Strait Islander

VIC

Female

Neurology

Other

VIC

Male

Toxicology

Other

NSW

Female

Metabolic

Other

QLD

Female

Nutrition

Other

VIC

Male

Metabolic

Immigrant

QLD

Female

Traumatic

Other

NSW

Female

Traumatic

Other

NSW

Female

Gastrointestinal

Immigrant

NSW

Male

Traumatic

Immigrant

VIC

Female

Dermatology

Aboriginal and Torres Strait Islander

NSW

Female

Dermatology

Aboriginal and Torres Strait Islander

QLD

Male

Renal

Aboriginal and Torres Strait Islander

TAS

Male

Respiratory

Other

VIC

Female

ENT

Other

NSW

Female

Respiratory

Aboriginal and Torres Strait Islander

SA

Male

Developmental

Other

NSW

Male

Respiratory

Immigrant

NSW

Female

Respiratory

Aboriginal and Torres Strait Islander

QLD

Male

Nutrition

Other

NSW

Female

Gastrointestinal

Mixed

WA

Infants (1 month–2 years)

Young children (2–6 years)

(continued)

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4 Results of Health Inequity Analyses

Table 4.1 (continued) Age range

Gender

Health condition at presentation

Children (6–12 years)

Female Male

Adolescents (12–18 years)

Patient background

State/Territory

Metabolic

Mixed

VIC

Developmental

Aboriginal and Torres Strait Islander

NSW

Female

Mental Health

Mixed

NSW

Male

Mental Health

Other

QLD

Female

Respiratory

Aboriginal and Torres Strait Islander

NSW

Male

Mental Health

Other

NSW

Female

Mental Health

Other

NSW

Female

Neurology

Aboriginal and Torres Strait Islander

VIC

Male

Mental Health

Aboriginal and Torres Strait Islander

WA

Male

Mental Health

Immigrant

NSW

Female

Urology

Other

NSW

Female

Mental Health

Other

SA

Female

Mental Health

Immigrant

NSW

Male

Rheumatology

Other

SA

Female

Mental Health

Other

QLD

Male

Mental Health

Aboriginal and Torres Strait Islander

QLD

Male

Mental Health

Other

NSW

Male

Mental Health

Other

NSW

Female

Dermatology

Other

NSW

Male

Traumatic

Aboriginal and Torres Strait Islander

WA

Male

Toxicology

Other

VIC

Male

Orthopaedic

Aboriginal and Torres Strait Islander

NSW

Female

Mental Health

Aboriginal and Torres Strait Islander

QLD

Female

Mental Health

Other

NSW

Male

Mental Health

Immigrant

SA

Male

Neurology

Aboriginal and Torres Strait Islander

NT

Male

Mental Health

Immigrant

VIC

Male

Dermatology

Aboriginal and Torres Strait Islander

NT

Male

Mental Health

Aboriginal and Torres Strait Islander

WA (continued)

4.3 Health Inequity

33

Table 4.1 (continued) Age range

Gender

Health condition at presentation

Patient background

State/Territory

Female

Mental Health

Aboriginal and Torres Strait Islander

NSW

Male

Mental Health

Aboriginal and Torres Strait Islander

NSW

Female

Mental Health

Other

QLD

Female

Mental H ealth

Aboriginal and Torres Strait Islander

NSW

Female

Mental Health

Other

SA

4.3 Health Inequity The initial analysis intended to identify the ways in which ‘health inequity’ is conceptualized by healthcare professionals, as there is evidence in the Australian literature that States and Territories not only have narrow conceptions of health inequity but also employ different conceptions in key health documents [1]. However, it was found that all healthcare professionals were identifying health inequity as defined by the World Health Organization and experts in this area as relating to differences or disparities in health outcomes that are systematic, avoidable, unjust [2, 3]. No health professional explicitly identified in their definition of health inequity the moral dimension. There was no variation in responses so this line of enquiry did not yield differing conceptions and was not further pursued. The reason for the unanimity in responses is that the healthcare professionals taking the course had evidently all read the assigned readings carefully and had a clear understanding of what constitutes health inequity.

4.4 Social Determinants of Health (SDH) The 10 SDH identified as impacting on the Australian patients described in the CRs included: Crime and Safety; Education; Employment; Food Environment; Health Systems and Services; Housing; Income and Wealth; Secondary Consequences of SDH; Social Environment; and Transport. The data relating to each SDH was further analyzed resulting in the identification of sub-themes. Some of these sub-themes were further clarified with a third level of analysis (Table 4.2). The findings pertaining to each SDH are numerous and are presented below under the relevant headings. Crime and Safety In almost two thirds of the cases examined (n = 39), the child was exposed to an unsafe environment relating to violence, crime, or bullying (Table 4.3). Many of these

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4 Results of Health Inequity Analyses

Table 4.2 Social determinants of health themes and sub-themes under each SDH SDH themes

Themes (2nd level)

Sub-themes (3rd level)

Crime and Safety

Violence

Parent Carer Abuse/Neglect Other Child

On the Way to Crime

–

Parental Incarceration

–

Education

Employment

Food Environment

Health Systems and Services

Housing

Bullying

–

Interrupted or Abandoned

–

Low health literacy

–

Parental lack of education cited

–

Problems at school

–

Impact of child’s condition on parental employment

–

Inability to work

–

Limited opportunity

–

Unemployment

–

Unstable employment

–

Not breastfed

–

Lack of nutritional awareness

–

Obesity

–

Poor access

–

Disruptions to continuity of care Lack of parental/carer engagement Missed appointments ED presentations Early discharge Inability to access government supports

Kinds of supports Underlying reasons Healthcare professionals’ ability to assist

Lack of communication with healthcare staff

–

Lack of integration of services

–

Lack of services

–

Sup-optimal care

Nature of sub-optimal care

Affordability

–

Homelessness

–

Inadequate

–

Over-crowding

– (continued)

4.4 Social Determinants of Health (SDH)

35

Table 4.2 (continued) SDH themes

Themes (2nd level)

Sub-themes (3rd level)

Secondary Consequences of SDH

Mental health

Child/Adolescent Parent

Substance abuse

Child/Adolescent Parent/Other family member

Family

Kinship care Foster care Lack of parental involvement Multiple homes

Lack of support networks

For children For the child and carer For mothers For fathers

Access to care

–

Impact on schooling

–

Social isolation

–

Social Environment

Transport

Table 4.3 SDH theme: crime and safety Crime and Safety Sub-themes (2nd level) Sub-themes (3rd level)

Number of cases affecteda

Violence

Parent: parental violent behaviour towards each other

16

Carerneglect/abuse

28

Other: violence from others in the child’s immediate circle

5

Child: violence perpetrated by the child

6

On the way to crime

–

4

Parental incarceration

–

4

Bullying

–

9

a

In relation to the sub-theme violence, the ‘number of cases affected’ relates to all children/young people who were affected by the various types of violence. This differs from the total number of children/young people affected by violence in general, as many of them experienced more than one type of violence. This granularity aims to expose the detail of these children/young peoples’ experience of violence in their lives

children were exposed to several forms of unsafe living conditions relating to the sub-themes identified. In some cases, they were exposed to such conditions inflicted on them by others but also engaged in such behaviours themselves towards their family or community members.

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4 Results of Health Inequity Analyses

Violence Thirty-nine children/young people were significantly and variously exposed to violence,2 which clustered around four themes: parental (including partners) violent behaviour towards each other; carer (including parents/partners/carers) neglect/abuse towards the child; violence from others in the child’s immediate circle including relatives, foster family members, or the child’s own intimate partner (but excluding parents/partners); and, finally, violence perpetrated by the child towards others. Many of these children were subjected to more than one form of violence. (We acknowledge that neglect is not necessarily a violent behaviour per se; some documents [4], however, accept reference to the concept of neglect as abuse and we have taken this wider view, especially due to its close proximity to abuse). Parental violent behaviour towards each other In all cases (n = 16) violence in the parental relationships was perpetrated by males (i.e. fathers/partners) towards the mothers of the children/young people, with one mother beaten to death. In most cases, the violence was historic. The violence was mainly attributed to psychosocial pressures, alcohol alone, alcohol and drug abuse, financial pressures, and in one case, it was associated with issues of control. In many of these cases child protection, judicial, or correction authorities were involved. In all cases, children were affected by the violent nature of the home environment even if the abuse was directed solely at their mother. Reactions to violence, where described, included the child assuming the role of mediator, attempting to hide, or displaying behaviours which would ultimately cause them to become involved with the judicial system. Carer neglect/abuse Almost half the cases examined involved numerous forms of abuse or neglect by the parent/carer/partner. Of the 28 cases involving neglect/abuse (Table 4.3), seven related to abuse suffered by the child/young person (Table 4.4), 16 related to neglect for the child/young person (Table 4.5) and five cases related to children/young people who suffered both abuse and neglect (Table 4.6). Abuse inflicted by parents/carers was identified in seven cases (Table 4.4) and child protection services had been involved in all cases but one. The nature of the abuse children/young people suffered ranged from non-accidental injuries, some of which required further investigation to confirm their non-accidental nature (i.e. to exclude osteogenesis imperfecta), sexual abuse perpetrated by the step-father, and physical and emotional abuse. Potential contributing factors to abuse in the home environment included (where mentioned) parental mental health issues, extreme financial strains, intellectual disability, low health literacy, exposure to the mothers’ partners, and substance abuse. 2 An

additional five CRs made reference to violence in the child/young person’s environment as part of the background information collected during the child/young person’s contact with health services. These cases have been excluded from this analysis because no further detail was provided.

4.4 Social Determinants of Health (SDH)

37

Table 4.4 Characteristics of abuse and response to abuse Age and Sex of patient

Nature of abuse

Time experienced

Child protection services

8w-F

Humeral fracture

Present

Yes

5m-M

Subdural haematomasdifferent ages; old rib fractures

Past/Present

Yes

2yo-F

Humeral spiral fracture Past/Present (?) (non-accidental?), old facial bruising, torn labial frenulum of the mouth—lost to follow-up

Yes

10yo-F

History of physical abuse, Past emotional trauma

Yes

14yo-M

Abusive step-father/mother relationship

Past

No

14yo-M

Physical and verbal abuse Past

Yes

15yo-F

Sexual abuse

Yes

Past

w = week, m = month, yo = year old, M = male, F = female

Neglect relates to acts of omission or commission that impact adversely on the child/young person’s health and which are unrelated to intent. In other words, neglect is unrelated to whether such acts were intentional or not, and to cultural issues which have led to acts of parental or carer omissions. Instead neglect relates to the impact on the child/young person’s health and wellbeing. Neglect was identified as impacting on the child/young person’s health status in 16 cases (Table 4.5). In most cases (n = 9), the patient had suffered and continued to suffer neglectful child rearing practices, in some cases (n = 6) the patient had suffered neglect in the past and, in one case, the child suffered neglect at the time of presentation but not in the past. Child protection services had been involved in all cases of neglect except five. In all but five cases, the children were aged eight years or under. Neglectful parental/carer behaviour varied significantly and ranged across multiple areas of the children’s needs. The behaviours impacting on these children/young people’s health ranged from not presenting the child for treatment; opposition to treatment; inappropriate feeding (either not feeding the child enough thus leading to malnutrition or failure to thrive; or feeding the child so much that it impacted on the child’s health); not completing treatments; exposing the child to harmful elements (such as heat and the sun); poor parenting skills including lack of maternal bond and inability to parent due to substance abuse and/or mental health illness or criminality; not ensuring appropriate hygiene leading to skin infections and infestations; placing parental needs before the child’s substantial healthcare needs; and failing to provide for their children due to parental fighting.

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4 Results of Health Inequity Analyses

Table 4.5 Characteristics of parental/carer neglect and response to neglect Age and Sex of patient

Nature of neglect

Time experienced

Child protection services

5w-M

Concern about neglect Past before baby born associated with mental health and drug dependency. Child removed from mum’s care

Yes

4m-M

Extreme sunburn leading to infected wounds and fever

Past/present

Yes

5m-F

Inexperience with caring for high needs baby, reliance on other family members so parents can continue to go out partying, need reminding of importance of follow-up appointments

Present

No

7m-F

Concerns about neglect Past/present due to poor maternal bond/poor parenting skills. Severe malnutrition and developmental delay

Yes

2yo-F

Propensity to leave child Past/present alone on the ward for hours and neglect regular feeding. No maternal comfort, mother sleeping through crying and leaving the room when child required procedures. As a result of inattention to feeding, child was failing to thrive with a low weight for her age

Yes

3yo-F

Poor hygiene, highly Past/present contagious skin condition, skin infestations

No

3yo-F

Failure to bring to Past/present appointments, not being present on the ward, continuing to feed enormous amounts of junk food despite education provided

Yes

(continued)

4.4 Social Determinants of Health (SDH)

39

Table 4.5 (continued) Age and Sex of patient

Nature of neglect

Time experienced

Child protection services

5yo-M

Parent uncontactable and lack of follow-up for serious condition

Past/present

Yes

5yo-F

Inability to properly care for the child

Past/present

Yes

6yo-F

Father displayed anger Past towards the child when she experienced pain/distress. Father opposed to the child receiving further medical care and antagonistic towards doctor’s involvement

No

8yo-F

Unspecified neglect at home and removed from parental care. Rarely completed antibiotic courses and infrequently saw the same doctor for consecutive appointments leading to permanent serious injury due to recurrent ear infections

Past

Yes

14yo-M

Associated with parental Past substance abuse—patient has a background of faecal incontinence since the age of 3 potentially as result of childhood accident

Yes

15yo-F

Patient left in car and Past forgotten about at age 6, leading to a prolonged admission with some longer-term complications

Yes

15yo-M

Unkempt, with poor hygiene with significant body odour, in obvious discomfort, moderately dehydrated. Previous diagnosis: alcohol withdrawal syndrome and smoking

No

Past/present

(continued)

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4 Results of Health Inequity Analyses

Table 4.5 (continued) Age and Sex of patient

Nature of neglect

Time experienced

17yo-F

Teenager forced to take on Past/present parental role because of parental acrimonious relationship

No

17yo-F

Mother’s inability to care for child due to substance abuse and father’s criminality

Yes

Past

Child protection services

w = week, m = month, yo = year old, M = male, F = female

Abuse and neglect were suffered by children in five cases (Table 4.6). All but one patient were 10 years old or under. In all but one of these dual abuse/neglect cases, the patients were males and the youngest of all was a baby girl aged 9 months. The abuse these patients had experienced was prior to the clinical presentation and related to either non-accidental physical injury or domestic violence; two children were impacted by non-accidental injuries and three by domestic violence fueled by parental use and abuse of substances such as drugs and alcohol. Some of these dual abuse/neglect cases featured parental mental health issues or parental intellectual disability as well as a whole array of challenging socio-economic factors. The neglect these patients experienced was both ‘historical’ but also present in the lives of all children at the time of presentation except for the adolescent. This adolescent had experienced neglect when living with his parents but had since been removed from the home environment. The nature of neglect experienced ranged from a child’s renal condition going undetected despite the visible external signs, ailments due to inadequate body and dental hygiene, carer behaviours damaging the health of a child, undescribed neglect resulting from parental substance abuse, and finally child abandonment because the foster carers could not deal with the child’s behavioural issues. This abandoned child suffered deep trauma and lacked experience of warm family relationships due to his removal from family and his status as a Ward of the State. Other: Violence from others in the child’s immediate circle Violence from others towards the child/adolescent was noted in five cases, all involving girls aged between 11 to 17 years. In three cases the patient was experiencing violent behaviour perpetrated by another member of the (foster) family: in one case, the child’s medical complaint coupled with the child’s extreme fear of a respite family’s teenage son pointed to possible sexual abuse, which child protection services were unable to confirm and simply issued advice that the child should not be sent to this respite family; in another case, anorexia was partly being linked to the 14year-old girl being allegedly sexually assaulted by a member of her extended family. These allegations were made when the parents were not present in the consultation

4.4 Social Determinants of Health (SDH)

41

Table 4.6 Characteristics of abuse and neglect experienced by the same children and response Age and Sex

Abuse Nature of abuse

Time experienced

Neglect Nature of neglect Time experienced

Child protection services

9m-F

Domestic violence and exposure to parental substance abuse

Past

Associated with parental substance abuse. Grandmother smokes in house despite baby’s respiratory condition

Past/present

Yes

3yo-M

Multiple (non-accidental?) bruises

Past

Undetected health condition with visible physical signs discovered by chance

Past/present

Yes

4yo-M

Non-accidental injuries as babyundescribedextreme domestic violence-exposure to parental drug abuse

Past

Poor skin hygiene with a fungal infection affecting many areas Poor dental hygiene with extensive dental caries

Past/present

Yes

10yo-M

Domestic violence and exposure to parental substance abuse

Past

Parental neglect related to substance abuse and foster carer abandonment

Past/present

Yes

17yo-M

Domestic violence and exposure to parental substance abuse

Past

Alleged child Past neglect reported to child protection services in earlier childhood

Yes

m = month, yo = year old, M = male, F = female

but there was no mention of involvement of child protection services as a result of the disclosure, despite the alleged perpetrator having immediate access to the girl (see Chap. 3, Box 1). The description of the treatment by the health professional focused solely on addressing cultural issues and improving family relations. In the third case, the 15-year-old female was exposed to violent behaviour from her brother and heavy drinking and substance abuse by a number of family members, including her brother. In one of the five cases, it came to light that the 17-year-old mother of the baby that

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4 Results of Health Inequity Analyses

presented had (allegedly) been a victim of sexual assault when she was younger. The fifth case related to a 17-year-old girl who was physically and verbally abused by her boyfriend. This girl’s life was complicated by severe drug-related mental health issues and a history of domestic violence. In three of the five cases, the girls were also bullied at school around the time they presented and the girl who presented with anorexia had experienced racial bullying when younger. Child: Violence perpetrated by the child Six males (ages ranging from 10–17 years) displayed violent behaviour towards others, including family members, schoolmates, agency staff/carers/foster care children and the police. Five of these patients were victims of violence themselves with four having experienced domestic violence and one having experienced racial bullying at school (with a perception from the child that the teacher condoned this behaviour). The sixth patient, a 15-year-old male, had displayed violent behaviour towards family members and the police and was admitted to hospital as a result of significant mental health issues. The violent behaviour of the youngest of these children, a 10-year-old boy, was linked to his foster family abandoning him, as a result of which he suffered post-traumatic stress disorder (PTSD) and periods of aggression, emotional escalation and liability. On the way to crime Four young males (14–17 years old) had engaged in activities such as theft, assault (towards both civilians and police), and possession of drugs. One of the young patients, a 14-year-old ice user, presented with his sister to seek help for his ice drug addiction. The two older patients, aged 15 and 17 years, had already engaged with law enforcement. Three of the patients had experienced family violence, one youth had experienced violence and neglect, and two of the youths suffered significant mental health issues. Parental incarceration Four of the patients (with ages ranging from 8 weeks-17 years old) had fathers who were or had been incarcerated. The only constant feature in these children/young people’s lives was chaos and resultant instability, as prominent features of these families’ lives included substantial drug and alcohol abuse, violence, unemployment, and considerable financial hardship amongst an array of other significant issues, including mental illness affecting at least one of the parents and, in some cases, the child as well. None of these patients remained with their biological fathers. Bullying There were nine cases where bullying was reported, all of which occurred in the school context except in the case of a 15-year-old girl who experienced it in the workplace. Amongst the nine cases were three children/young people who had experienced or were experiencing racial bullying. The youngest child was a 7-year-old boy whose condition (selective mutism) was adversely affected by the stress he experienced both on his way to and from school but also at school. The rest of the children/young

4.4 Social Determinants of Health (SDH)

43

people’s ages ranged from 12–17 years with the majority clustering around 14 and 15 years of age (n = 6). The impact of bullying on the children’s emotional wellbeing was significant and ranged from low self-esteem (n = 1), instances of self-harm (n = 2), to aggressive or violent behaviour (n = 3). In three cases, bullying was mentioned but its impact on the child was not specifically or clearly articulated by the healthcare professional. Difficulties developing friendships was explicitly mentioned in only three cases. Education Under the theme, Education, four sub-themes relating to the children/young people and their parents were identified: Interrupted or abandoned schooling; Problems at school; Low health literacy; and Parental lack of education cited (Table 4.7). The health of 43 of these patients was affected by at least one education-related issue that they themselves experienced, or that their parent(s) experienced and which impacted on the health status of the child, as identified by the healthcare professional. In some cases, the child’s health was impacted by more than one educationrelated issue. That is, in 25 of the cases, the child/young person was affected by only one such education issue while the remaining 18 children/young people were affected by two education-related issues. Those affected by two education-related issues involved: parental lack of education and low health literacy in nine cases; Interrupted/abandoned schooling and low health literacy in eight cases; and problems at school and parental lack of education in one case. The sections below examine each of the sub-themes identified. Interrupted or abandoned schooling Sixteen children/young people (aged 6–17 years) had interrupted schooling, the majority of whom clustered around the ages of 14 (n = 5) and 15 (n = 6) with the remaining being 17 (n = 2), 16 (n = 1), 10 (n = 1) and 6 (n = 1). Of these 16 children/adolescents, two were not attending school at the time of their contact Table 4.7 SDH theme: education

Eduction Sub-themes (2nd level)

Number of cases affected a

Interrupted or abandoned

16

Problems at school

7

Low health literacy

26

Parental lack of education cited

13

a ‘Number

of cases affected’ relates to all children/young people who were affected by the various sub-themes under ‘Education’. This differs from the total number of children/young people affected by the SDH ‘Education’ in general, as many of them experienced more than one type of education-related issue. This granularity aims to expose the detail of these children/young peoples’ experience in relation to this SDH

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4 Results of Health Inequity Analyses

with the health service, the school attendance of five young people was declining, four young people were refusing to attend school, and five had abandoned school altogether. Schooling was disrupted for more females (n = 9) than males (n = 7). The reasons cited by the healthcare professional as contributing to the abandonment of school were multiple for some children/adolescents and included bullying (n = 2), frequent detentions and truancy (n = 2), pregnancy (n = 2), or partly due to lack of transport to school (n = 1). Other contributing factors impacting on these children/young people’s ability to attend and remain in school were mental health issues (n = 14) (four of which were major), drug and alcohol abuse (n = 8), and violence (n = 12). In the majority of cases, these children/young people were experiencing difficulties with two (n = 8) or all three (n = 5) of the above contributing factors. Only three children/young people were impacted by a single issue. In addition to the above contributing factors, all children/young people were also experiencing other serious issues which varied significantly in nature. While not mentioned as factors impeding their school attendance, these very challenging life circumstances must certainly have had some impact. Factors pertaining specifically to the child/young person and impacting on their lives included other health concerns (for example, gastro-intestinal issues), homelessness, deep financial crises, adolescent pregnancy (including tragic circumstances such as the death of one of the babies), (racial) bullying, lack of support networks for the child/young person, and a peer pattern of abandoning school. Further complicating these children/young people’s lives were parental issues impacting on them directly; these included parental divorce and the adolescent assuming parental duties towards siblings, mental health issues, alcohol abuse, and suicide. Problems at school In addition to the children/young people whose education was interrupted or abandoned, and who evidently also faced great difficulties at school, there were seven children/young people who were encountering significant difficulties at school but whose schooling had not been interrupted or abandoned. These children were mostly under the age of 10 (n = 4), but there was also a young girl aged 12, a boy aged 14 and a boy aged 17. All but two were boys. These children/young people had been diagnosed with disorders ranging from low mood and withdrawal, issues with memory and executive function, a language disorder, selective mutism, and ADHD to an intellectual and communication impairment resulting from recurring ear infections. These children/young people’s schooling was complicated by their health issues and resulted in a range of adverse educational outcomes including the child not being able to read or write, difficulties concentrating and engaging in class work, reduced focus and attention in class, and declining school performance. For all of these children/young people, difficulties in other areas of life, beyond their control, impacted significantly on their schooling. Such issues included parental mental illness, chaotic family circumstances relating to divorce, relocation, domestic violence, parental fighting and excessive drinking, parental neglect and parental criminal history. Adding significant stress to two children’s lives was the bullying and exclusion they experienced at school. For some children/young people, these

4.4 Social Determinants of Health (SDH)

45

immense pressures translated into poor engagement with schooling, behavioural issues, and criminal behaviours. For some of these children/young people, school was not a pleasant environment, as it added significantly to the complexity and stress they were already experiencing in life. Low health literacy Low health literacy was raised as an issue contributing to the child/young person’s health concerns in 26 of the 61 cases analyzed. In most cases, parental/carer low health literacy (n = 20) was cited as a concern for the child/young person’s health but, in some cases, low health literacy related to the young person presenting (n = 6), all of whom were between 14 and 17 years old. Of the 26 children/young people impacted by low health literacy, the majority were under the age of ten (n = 13), while the ages of the remaining young people ranged from 12 to 17 years. The health issues that these children and young people were affected by varied considerably: mental health (n = 8), dermatological issues (n = 5), respiratory (n = 4), metabolic (n = 2), neurological (n = 2), gastrointestinal (n = 1), rheumatology (n = 1), renal (n = 1), ENT (n = 1), and orthopaedic (n = 1) problems. Actions or omissions that were regarded as demonstrating low health literacy included: not seeking medical attention at an earlier stage; not attending scheduled appointments; non-adherence to treatment requirements; and a lack of appreciation or understanding of key factors impacting on the child/young person’s health, such as: dietary requirements, the link between family members’ behaviours and the child/young person’s health condition (e.g. smoking and the child’s respiratory condition), or the severity of the condition itself. Poor antenatal and postnatal care on behalf of the mother (for example, dangerous health practices such as substance abuse) were also viewed as an indication that the mother did not fully appreciate the impact on the child. A perception of medical conditions shaped by differing cultural perspectives and language barriers also led to actions/omissions that were regarded as demonstrating low health literacy. For example, language barriers as well as the influence of a different culture were mentioned as impacting on low health literacy in four cases, language issues alone in two cases, and the impact of culture on the care provided to the child in one case. In three of the cases where cultural differences were impacting on the care of the child, the children were experiencing mental health issues, for which different perceptions exist depending on the culture in question. It is important not to ignore that several other factors impacted on actions/omissions deemed to demonstrate a lack of or low health literacy. Examples of such factors included mental illness, other dramatic home circumstances such as divorce, and difficulty getting to appointments. In another case, it was speculated by the health professional that a lack of trust and fear of discrimination may have contributed to a late presentation. Parental lack of education Lack of parental education was cited in 13 cases as contributing, to a greater or lesser degree, to an adverse impact on the child/young person’s condition. The vast majority of these cases (n = 9) were also cases in which a low level of health literacy

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was cited as impacting on the child/young person. In most cases citing parental lack of education (n = 11), parental educational level was associated in part with issues of non-compliance, inability to appreciate the gravity of the health condition, late presentation, abuse, neglect, and poor choices during the antenatal and postnatal period. In one of these cases, it was acknowledged that non-compliance could also have been linked to parents not understanding the information provided by the hospital, as it was not tailored to the parents’ lower educational level. In another case, although parental lack of education may have contributed, cultural and religious issues were more prominently cited as creating challenges for the parents and the adolescent patient understanding mental health. Finally, in one case, the impact of low parental education was not stated per se but the mother’s learning difficulties and mental illness were cited, along with her absence from the child’s presentation to health professionals. Employment Over two thirds of the cases examined (n = 43) cited employment-related difficulties as impacting on the patient (Table 4.8). In some cases, these employment issues related to the patients themselves, which is an indication of a host of additional complexities impacting on these young people’s health, and lives more broadly, such as not attending school or having to support themselves financially at a young age. Impact of child/young person’s condition on parental employment In five cases, almost equally split between mothers (n = 3) and fathers (n = 2), the child/young person’s condition was cited as the reason why the parent could not work or why their employment was affected. For example, a father had to abandon work to be the sole carer for his child as a result of his wife dying, while another had lost his job due to excessive sick leave taken to attend hospital during his child’s admissions. Table 4.8 SDH theme: employment

Employment Sub-themes (2nd level) Impact of child’s condition on parental employment

Number of cases affected a 5

Inability to work

5

Limited opportunity

9

Unemployment Unstable employment a ‘Number

20 4

of cases affected’ relates to all children/young people who were affected by the various employment-related sub-themes identified. This differs from the total number of children/young people affected by employment-related issues in general, as many of them were impacted by more than one sub-theme. This granularity aims to expose the full impact of employment-related issues on these children/young peoples’ lives

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In fact, the parents in the latter case were adamant that they would discharge their son against doctors’ recommendations because the father had to be at his new job very early the following morning. One of the mothers had to give up working when her child was diagnosed with his condition while the other mother was simply cited as being unable to work due to care requirements. Finally, one mother tried to balance looking after her child and working but their income was severely affected impacting the mother’s ability to feed the family. Inability to work Although there were many parents who were clearly unable to work as a result of their circumstances, in only one case was an acquired injury mentioned as resulting in loss of work (acquired during a violent intoxicated fit). In four additional cases, inability to work was not cited specifically but was surmised from the fact that the mothers were experiencing homelessness amongst other health and social circumstances. Limited opportunity In nine cases, it was noted that the parent(s) or, in some cases, the young person’s employment opportunities were limited either by their personal circumstances or by their environment. In seven of these cases, limited opportunity was acknowledged in relation to unemployment experienced by the parents or young person. For most individuals, more than one issue was identified as limiting their opportunities for employment. For example, in addition to a lack of education, the employment opportunities for one of the adolescent mums were not only limited by her status as a recent mother whose child had died but also by her homelessness. Lack of education was mentioned in four cases with one case also citing limited opportunities to access education. In two cases, intellectual disabilities were a constraining factor and in one of these cases, psychiatric and behavioural difficulties further compounded the situation. A lack of job opportunities locally was mentioned in three cases, one of which noted the intergenerational nature of unemployment. The lack of local job opportunities was evident in yet another case, as the parent had to seek work away from his family. Unemployment Unemployment3 was mentioned as impacting on the child/young person’s condition in 20 cases. Over half of the unemployed individuals (n = 15) were mothers of the patients and one of these adolescent mothers was a patient herself. Of these 15 mothers, two were adolescents and nine were raising their child without a father present. In four of these 15 families, where fathers were present, the father was also unemployed. Three additional cases made reference to the father or male partner being unemployed. In two additional cases, the male patients, both aged 14, were not attending school and did not hold jobs. In seven of the cases, there was mention of unemployment or child support benefits and in two cases there was mention of 3 We

use the term ‘unemployed’ to reflect the manner with which work status was referred to by healthcare professionals. In Chap. 6, we provide clarifications on terms.

48 Table 4.9 SDH theme: food environment

4 Results of Health Inequity Analyses Food environment Sub-themes (2nd level)

Number of cases affecteda

Not breastfed

2

Lack of nutritional awareness

8

Obesity Poor access

4 11

a ‘Number

of cases affected’ relates to all children/young people who were affected by the various sub-themes identified under the SDH of Food Environment. This differs from the total number of children/young people whose food environment impacted on their health in general, as many of them experienced more than one type of issue. This granularity aims to expose the detail of these children/young peoples’ food environment

inadequate financial support, which may imply that they were receiving at least some financial support. Two of these cases mentioned intergenerational or longterm unemployment. In two of the cases, where unemployment was specifically mentioned, the mothers were also experiencing homelessness. Unstable employment Unstable parental employment was noted as impacting on the patient in four cases. The majority (n = 3) related to fathers’ unstable employment due to occasional employment opportunities or a failing business. Serious mental health issues and alcohol abuse were also mentioned in these last two cases, which may have impacted on the instability of their employment. The only mother cited as being engaged in unstable employment relied heavily on social benefits. Food Environment The child/young person’s health was impacted by the food environment they were exposed to at home in 16 cases (Table 4.9). The four themes that emerged in relation to this SDH included: not breastfed, lack of nutritional awareness, obesity, and poor access. Poor access related to a lack of consistent access to adequate food or, where mentioned, healthy food such as fruit and vegetables, irrespective of the reason for this, which in the CRs was not always provided. Food environment was referred to by health professionals in cases where nutrition had an impact on the child or had the potential to impact on the child’s health in the long-term. In the majority of cases (n = 9), each case was analysed under a single sub-theme. In some cases (n = 5), however, the case was analysed under two sub-themes and in two cases under three sub-themes (Table 4.9). Not breastfed A newborn was identified as being formula-fed and the 18-year-old mother was also nutritionally deficient. There were concerns about the baby’s potential failure to thrive and vulnerability to illness. The baby and mother were exposed to extremely poor

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living conditions with no refrigeration or safe water supply. The mother’s situation was further complicated by unemployment, lack of education and poor health literacy. A toddler, looked after by his widowed father, had not been able to be breastfed and concerns were raised about its potential future impact although the child was generally healthy. This father was extremely well-supported with numerous benefits and allowances but was noted as lacking in health literacy and an appreciation of his son’s dermatological condition, which was attended to at a late stage due to late presentation. Lack of nutritional awareness There were eight children/young people whose health was identified as suffering as a result of parental/carer lack of nutritional awareness. Most of these children (n = 5) were under 5 years of age with the youngest being a prematurely born newborn girl and the oldest a four-year-old female (and in between a 17-month male, and a three-year-old male and female). The ages of the rest of the children/young people were nine (girl), 14 and 15 years (both boys). The child’s growth and/or development was affected by the lack of nutritional awareness in four cases. In two cases, the children were morbidly obese and suffered co-morbidities, which in one child’s case was life threatening. In the case of the two teenage boys (14 and 15 years old), the lack of nutritional awareness led to an impact on the general health for one of them and, in the case of the other, a history of “simple but very severe infections”. In four of the cases, the poor nutritional quality of the patients’ daily intake was highlighted with mention of some children subsisting exclusively on simple carbohydrates and saturated fats (spaghetti, chips etc.). Some of the reasons provided for this lack of nutritional awareness included low educational levels, which was cited explicitly in only three cases but very evident in the majority. In addition to low educational levels, in the case of the 17-month-old, it was suggested that cultural reasons may have contributed, as the mother relied on her breastmilk rather than insisting on solids, a standard practice in her culture, but which resulted in the child not gaining weight. In another case involving a young mother whose newborn was severely malnourished and failing to thrive, it was noted that the mother also needed nutritional support, which both mother and baby received during their hospital stay. Other factors impacting on this mother’s lack of nutritional awareness may have been her very poor living conditions with no fridge available and a contaminated local water supply. Obesity Three of the four children classified as being from overweight to morbidly obese were under the age of 10 (3, 5 and 9yo females). The fourth patient was a 15yo female who was aware of her weight problems but suffered low mood and was not motivated to reduce her weight. Common threads in these patients’ lives contributing to obesity was the poor nutritional value of the foods consumed, often in large quantities. Their key sources of nutrition included take away food and sugary drinks. Two of

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these children’s lives were also complicated by very disruptive and stressful home environments involving violence, alcohol, and drug use. Low health literacy and education were cited in three of the four cases. Poor Access Of the 11 children/young people who were cited as experiencing poor access to food, nine were under the age of 10 and two were 14yo males. Cited health outcomes included: failure to thrive (with one mother also malnourished), developmental delays, severe long-term constipation and nutritional deficiencies, malnutrition (including a 7-month-old described as “extremely wasted on presentation”), recurrent ear infections, and morbid obesity in a 3-year-old already experiencing serious co-morbidities. The nature of this lack of access to food varied somewhat across the cases; in three cases, limited access to fresh affordable food was cited, in one case it related to the mother substituting solids with her waning breast milk. In another case, involving a newborn, feeding on formula instead of the mother’s breast milk was the underlying reason for malnutrition. In another child, repeated bouts of tonsillitis may have impacted on the child’s ability to eat but “repetitive episodes of poor oral intake” were cited and underlying her non-treatment were financial issues. In one case, vitamin and other nutrient deficiencies resulted from a lack of meat consumption due to cultural reasons. In other cases, there was simply not enough food available. Poverty was cited in eight cases as relating to difficulties accessing sufficient food. In fact, in one case, the child’s main source of nourishment came from the school breakfast program while in another case, the mother pleaded with doctors to keep her adolescent son over the weekend, as she had no food until her next pay. Health Systems and Services Several sub-themes involving the Health Systems and Services were identified (Table 4.10): Disruptions to continuity of care, Inability to access government supports, Lack of communication with healthcare staff, Lack of integration of services, Lack of services, and Sub-optimal care. Disruptions to continuity of care A lack of continuity of care affected 26 children/young people according to healthcare professionals looking after these patients. The majority of the patients affected were under 10 years of age: n = 7 (newborn to 9 months old); n = 10 (2–6 years old); and n = 2 (8–9 years old). The remaining seven patients whose continuity of care was compromised were aged 13 (n = 1), 14 (n = 1), 15 (n = 3) and 17 years of age (n = 2). Issues considered to have disrupted continuity of care included lack of parental/carer engagement; missed appointments; presentations to ED, and early discharge. Underlying the issues that disrupted continuity of care were numerous factors including: transport or financial hardship; tumultuous/challenging family circumstances; and geographical location

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Table 4.10 SDH theme: health systems and services Health systems and services Sub-themes (2nd level)

Number of cases affecteda

Sub-themes (3rd level)

Disruptions to continuity of care

26

Lack of parental/carer engagement Missed appointments ED presentations Early discharge

Inability to access government 16 supports

Kinds of supports Underlying reasons Healthcare professionals’ ability to assist

Lack of communication with healthcare staff Lack of integration of services

6

–

6

–

Lack of services

32

–

Sub-optimal care

20

Past medical encounters and/or treatment Concerns about potential future impact

a ‘Number

of cases affected’ relates to all children/young people who were affected by the various 2nd level sub-themes identified under the SDH Health Services and Systems. This differs from the total number of children/young people affected in general, as many of them experienced more than one type of failing in relation to Health Services and Systems. This granularity aims to expose the detail of these children/young peoples’ experience with the healthcare services and systems

Lack of parental/carer engagement Lack of parental/carer engagement was a factor that disrupted continuity of care in 11 of the 26 cases. Of the 11 patients affected, five suffered respiratory conditions, two mental health issues, one a renal condition, one a dermatological condition, one a gastrointestinal issue, and one a developmental condition. The issues affecting parental/carer engagement were complex and appear to have related to broader personal/socio-economic issues. For example, an unresponsive mother was herself reported to be depressed and in the midst of ongoing family violence over many years, which had only recently resulted in an AVO being issued against the father. Similarly, a custody dispute over a 9-month-old patient created gaps in parental and carer engagement with education and financial hardship contributing to the difficulties encountered by the mother and grandmother. In another case, there were concerns that, once the patient returned to his family environment, the child’s care would decline despite efforts to support the family, which included engaging the child’s school principal. In two cases, continuity of care resulted from gaps created by transitions to new foster care. Lapses in the sharing of medical information with the foster carers resulted in a child with a renal condition and an adolescent with

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mental health issues missing medical appointments. Continuity of care was also compromised for a child whose grandmother required constant support to appreciate the needs of her 3-year-old granddaughter’s severe respiratory conditions, further compromised by morbid obesity. The treating team on her emergency admission had limited capacity to provide ongoing support for the child and the grandmother, as there was no primary treating physician involved in discussions. Parental/carer lack of engagement which disrupted continuity of care also came in the form of a mother on whom the teenage patient relied to bring her to appointments, many of which were missed, and who was uncooperative and seemed to lack understanding of the severity of her daughter’s mental health issues. In three cases, the lack of adequate parental engagement in the children’s conditions arose from severe mental health issues suffered by the mother, a lack of recognition of the severity of the child’s condition in another case, and a very low level of understanding that the living conditions were substantially contributing the recurrent acute exacerbation of the child’s asthma, the final case of which required resuscitation efforts. Finally, lack of parental engagement could be said to have characterized the case of a 6-year-old girl who presented to ED but whose mother took her away before she could be admitted. Problems associated with this child included a single, homeless mother who was distrustful of the healthcare system and for whom no Aboriginal Liaison Officer was available outside 9–5 work hours. This mother had never been given a written asthma plan nor a spacer. Missed appointments Missed appointments were cited as disrupting continuity of care in 14 of the 26 cases. Missed appointments were a result of other significant difficulties and disruptive circumstances playing out in the children and parents’ lives, which were impacted by more than one such factor in all cases but one. For example, in two of the cases, the parents were in the midst of legal interventions (e.g. custody dispute or Child Protection Services interventions due to violence). In addition to these disruptive family circumstances, these families were also experiencing parental mental health issues, a lack of ability to care for the child, or financial and transport challenges. In another case, the missed appointment came in the form of nurses not being able to conduct a home visit, as the single homeless mother, who distrusted the healthcare system, had given a false address. Factors that led to missed appointments for in 14 cases, in addition to financial and transport issues, included: poor carer physical and mental health, frequent moves and homelessness, teenage patient refusal to attend appointments even when transport was provided, chaotic home circumstances leading to confusion with appointment dates, a lack of support structures for young mums in crisis, transitions between foster homes, and a general lack of services near home. Emergency Department (ED) presentations ED presentations were considered to disrupt continuity of care in seven cases because long-term health issues did not receive continuous attention and were being managed

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in ED only when crises arose. All patients, but one, were under 10 years of age: 9month-old girl (respiratory problem), 2-year-old girl (neurological problem), 3-yearold boy (acute respiratory problem requiring resuscitation), 5-year-old girl (gastrointestinal issues), 6-year-old girl (respiratory problem) and 8-year-old girl (neurological problem). The seventh patient presenting to ED whenever she encountered health issues was a 15-year-old girl who lived in a women’s refuge. Two of the children routinely missed appointments but frequently presented to ED. In the case of the 8-year-old girl, she frequently presented at different general practices and EDs but was brought in by different family members as a result of her living between three homes. For this child, non-adherence to antibiotic treatments, the lack of continuity of care, and inability to have follow-up appointments with the same healthcare professional resulted in deafness. Both children presenting for respiratory concerns had no asthma plan and their mothers either had no spacer or had not received education on its use. In the case of the 3-year-old who required resuscitation, he had presented four times in the 10 months prior to his acute episode. Each time, parents were provided with action plans and education but these parents had limited English, as they were immigrants, and appeared to display low levels of trust. This child was exposed to heavy smokers in an overcrowded home. In the case of the 5-year-old with persistent gastrointestinal problems, the mother was experiencing severe mental health issues and had no social or family supports with her husband working away from home. Common features in these children’s families’ lives, compounding the already challenging health situations for each, were poverty and transport challenges as well as unstable family circumstances, such as homelessness, multiple homes, custody disputes, and intervention by Child Protection Services. Early discharge In a single case, continuity of care was disrupted at a critical point of the infant’s recovery on the ward after ED presentation with an acute exacerbation of reactive airway disease. This patient had suffered several similar episodes in the same year with some involving ICU interventions despite his parents’ careful compliance with the treatment regime. The parents saw no other alternative than to discharge their child against medical advice fearing that the father would lose his job again, as a result of frequent hospital attendance during the previous year. The mother did not hold a driving license so they felt it would have been impossible for her to get back. Underlying issues disrupting continuity of care Transport or financial hardship Transport or financial hardship were mentioned as contributing to a lack of continuity of care in 14 of the 26 cases but it was evident that most of these families faced significant financial challenges even if this was not specifically mentioned in relation to continuity of care. In fact, in a subsequent section

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(Income and Wealth), it is revealed that 56 of the 60 families were affected by such limited financial resources that they experienced poverty. Tumultuous/challenging family circumstances Contributing to the disruption of continuity of care in all these cases, as referenced above under specific sub-themes, was the general upheaval in many areas of these families’ lives. The challenges ranged from family violence and the break-up of family units, sometimes as a result of intervention orders, to challenges presented by other health issues, such as mental health. Hard life circumstances such as poverty, a lack of support structures, homelessness, frequent mobility (including transfers between foster homes), and excessive alcohol consumption also contributed. Geographical location Living in remote or rural settings was regarded as an underlying issue for a lack of continuity of care in six cases. Remote and rural settings not only presented difficulties for reporting health professionals to follow up the patient but also created a broader concern about continuity of care in health resource-poor localities. Remoteness, however, was not always the single factor impacting on disruptions to continuity of care. For example, the grandparents of one child were experiencing deep emotional trauma, ill health, and financial hardship in addition to long distances from services and specialists. In an additional case, the issue was not identified as relating to remote or rural locations but to the mother’s constant mobility, which precluded a regular healthcare professional providing care to the child. Inability to access government supports Inability to access government supports related to a range of services and supports. These included, for example, health services as well as other support services (including Aboriginal Liaison Officers), schemes, and government benefits for lowincome families, for child health, travel assistance for medical purposes, government resources such as Healthy Kids NSW, and payments that support Aboriginal and Torres Strait Islander children, young people, and adults. There were 17 cases in which government supports were impossible or difficult to access. In most cases, it was the parents who were unable to access government supports for their children but, in some cases, it was the patient having difficulties accessing supports (n = 2). One of these young people was a 14-year-old male handling his own drug and mental health-related issues with assistance from his sister and the other involved an adolescent single mother in crisis. The majority of cases where there was difficulty accessing government supports involved children under 10 years of age (n = 10) while the rest involved young people aged 13–17 years (n = 7). In only one case was it evident that the father whose wife had died was receiving adequate financial and healthcare support with an array of benefits offered: Centrelink income support,

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55

parenting payment, carers allowance, rent assistance and a health care card4 for both the child and the father. Kinds of supports This section relates to the kinds of supports these patients/parents were unable to access on their own. The range of supports that would impact on the patient’s health positively varied widely and included access to both medical and financial supports. Healthcare professionals dealing with the patients identified the supports required and made extensive efforts to ensure their patients could access the services required for them directly or for their families. Healthcare professionals helped their patients access mental health services (n = 7) which included two cases where the mothers also needed mental health assistance, other health services such as imaging, hearing and speech assessments, therapy (n = 3), access to specialists (n = 3), access to Aboriginal Liaison Officers (n = 2), medications (including access to the Closing the Gap PBS Co-payment Program) (n = 3), and ‘hidden’ benefits such as the rapid access scheme for surgery (n = 1). In addition to supports relating directly to health services, healthcare professionals identified a range of other needs primarily of a financial nature. Such supports sought on behalf of their patients included: housing support (n = 1), accommodation during the child’s hospital stay (n = 1), Centrelink allowances including the Special Child Benefit (n = 1), Health Care Card (n = 1), Youth/Study allowance (n = 1), and two more unspecified Centrelink allowances. Healthcare professionals also arranged financial support for travel (n = 2): the NSW Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) and a non-profit flight organisation for a patient living remotely. Other kinds of supports included access to a young mother’s support group and a suggestion for access to online government resources. In two cases online resources could not be accessed because the parent either had limited internet access or was unable to navigate online content. Underlying reasons There were several reasons why government supports could not be accessed, either because the patient or their parent did not know what supports were available and what they were entitled to or because they simply did not know how to access such supports. Healthcare professionals spoke of the many hours they themselves spent in an effort to identify and arrange for their patients and their families to gain access to government supports and services. Key factors impacting on families’ inability to access supports were significant and critical personal circumstances patients and their families were experiencing (n = 8). Such circumstances included, for example, homelessness, poverty, geographical remoteness, dealing with significant health and social issues at a very young age, and family instability. Another significant barrier 4 “A Health Care Card entitles you to cheaper prescription medicines under the Pharmaceutical Benefits Scheme.” but holders of this card may also receive bulk-billing for doctors’ visits, be beneficiaries of other state or council benefits such as energy bill, transport and council rates discounts, and other healthcare benefits. https://www.servicesaustralia.gov.au/individuals/services/ centrelink/health-care-card/who-can-get-card/what-benefits-are.

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was the difficulty people had navigating the health system, also cited as a barrier for healthcare professionals themselves. In one case, after failed attempts to find the right professional to speak to, a mother was directed to a website. She was, however, internet illiterate. Inability to use the internet or limited access to such a service was also noted in another case where resources are available only via this medium (Healthy Kids NSW). For some, access was determined by the unavailability of a specialist (n = 1) or an Aboriginal Liaison Officer (n = 1) who was critical in providing appropriate support but was unavailable outside working hours. One child was unable to access appropriate medical services due to his parents’ pending permanent residency application and for another, access issues related to historical trauma (accommodation at the hospital was offered to overcome the specific intricacies of the child’s hospitalization but the mother was terrified of staying at the hospital due to the historical treatment of Aboriginal people in medical institutions). Finally, for one child access to urgent surgery was impossible for financial reasons until the healthcare professional discovered a ‘hidden’ “rapid access scheme” for surgery. Healthcare professionals’ ability to assist This section relates to efforts made to support those patients/families mentioned above and is a sub-set of solutions adopted and discussed in Chap. 7. In most cases, healthcare professionals made extensive efforts to liaise with numerous professionals (including those outside the healthcare system, such as teachers) and contact government services to facilitate access to supports. They were successful in 15/16 cases. There were numerous instances where the doctor or other health care professionals in the team had to assist with filling in the forms or putting the patient or parent in touch with the right government department and, in one case, take the parent to Centrelink, as she did not know where it was or how to get there. Despite these efforts, supports came too late for a number of the patients, as they had needed substantial support earlier on in their health system journey (n = 4). These patients were impacted by life-long health concerns as they had not had access to appropriate supports at an earlier age. Furthermore, in one case, the requisite supports were identified by the healthcare professionals caring for the patient but due to structural barriers,5 access was not possible with an impact on the patient. In another case, as previously mentioned, the online resources identified as potentially beneficial to the child (i.e. Healthy Kids NSW) could not be accessed so the healthcare professionals engaged with local culturally appropriate health services in an effort to further support the child. Lack of communication with healthcare staff Lack of communication between patients or their families and healthcare staff created difficulties in providing treatments and building rapport in six cases. The conditions these patients were being treated for included mental health (n = 3), developmental issues (n = 1), dermatology (with underlying heart condition discovered) (n = 1), 5 An inability to access an Aboriginal Liaison Officer outside of working hours resulted in the mother

discharging her child against medical advice.

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57

and gastrointestinal issues (n = 1). The communication issues raised related to the parent(s) in only two of the six cases, with the remaining four focusing on communication challenges with the child/teenage patients, all of whom were boys of varying ages (4–15 years old). The reasons for poor communication were not always articulated. In some cases, it seemed to relate to the condition itself (selective mutism, developmental difficulties) while in other cases to language and cultural issues. In one case where communication and rapport building were complicated by the parents of the patient, it was acknowledged that the parents’ language skills and understanding were overestimated and that interpreter services would have assisted. These refugee parents, however, were not entitled to this service because of their status. Steps taken to overcome the barriers included the use of a culturally appropriate person to establish rapport as well as multiple attempts and non-threatening efforts to improve rapport with the recognition that age, language and culture were underlying factors. Broader issues relating to difficulties in the communication and understanding of medical information arose as a result of low health literacy, discussed under the SDH Education. Finally, there were also difficulties conveying critical medical and socially relevant information between services, as discussed below under Lack of integration of services and Sub-optimal care. Lack of integration of services There were only six cases in which it was apparent and noted that the lack of integration of services was impacting on the patient’s health. The manner with which this manifested varied widely. A lack of integration was noted between the treating hospital and GP, more specifically, in assisting to identify a GP for the patient so that ongoing care would not be disrupted and so that the child’s health would not deteriorate to the point where EDpresentation was required. There was a lack of integration between a hospital and child protection services, likely a result of the volume of work this service has. In this case, the healthcare professional spent inordinate amounts of time on hold on the phone even though the hospital was exceptionally busy. Also noted was a lack of integration of health services and other government support services central to ensuring the child was not at risk due to socio-economic factors. In another case, there was a lack of clear pathways for some services available in exceptional circumstances yet only discoverable by healthcare professionals after extensive efforts. In one case, a child’s health was impacted adversely when transitioning from one foster home to another as a result of a lack of integration within the system. Finally, another way in which the lack of integration of services was evident was in the treatment of a young male whose discharge went ahead without any consideration for the other significant health and social issues impacting on his general health. Lack of services The health of 32 patients was impacted by the lack of services available to them. The reasons services were not available to these children/young people related to rural/remote living in most cases (n = 18), program gaps (n = 12) and human resources gaps (n = 6). In some cases, the child/young person’s health was impacted

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as a result of more than one reason existing concurrently. For example, program gaps and remote living affected two patients while two other patients were affected by remote living and human resources gaps. In the majority of these 32 cases, the geographical location in which the children/young people lived was the underlying reason for the absence of services. Such services included primary healthcare, psychological and psychiatric services, as well as specialist services such as respiratory care, nutritional education services, obstetrics, speech pathology, paediatric healthcare services, availability of pharmaceuticals, and drug addiction services. Program gaps related to issues like a lack of screening for mental health concerns such as depression for two patients, a lack of community programs for migrant health information and education, unavailability of GP bulk billing which reduced the parents’ ability to access services,6 a lack of specialist services such as paediatric surgeons, mental health service for adolescents, and a public ENT service. Other program gaps related to the number of mental health visits permitted per annum, which in the case of one patient were too few to produce a positive outcome, or to the healthcare system’s over-reliance on technology to access healthcare (specifically, directing people to online resources which were inaccessible due to internet access issues or inability to use internet resources). Human resources gaps covered three main areas and included a lack of sufficient: Aboriginal Liaison Officers, general healthcare staff, and child protection services staff, which impacted on the time healthcare staff dedicated to dealing with child protection issues. Sub-optimal care The health of a total of 20 patients was negatively impacted by sub-optimal care. In this analysis, sub-optimal care refers to care that was not provided or to an intervention not made even though evidence existed that the child/young person needed medical or social supports to facilitate the improvement of their medical condition. It also refers to cases where future care or an intervention was uncertain therefore causing concerns about the child’s future health and wellbeing. Three key impacts on the child/young person were identified: 1. impact of past medical encounters and/or treatment (n = 14); 2. concerns about potential future impact (n = 7); and 3. impact on current treatment (n = 1). Some patients were affected by more than one such impact hence the stated numbers exceed the total number of children/young people identified as affected (n = 20). In the majority of cases (n = 14), the patients’ health at the time of presentation had already been adversely impacted by past medical encounters, treatment they had not received, or advice parents had not been given. Two of these cases also raised concerns about the future impact on the patient’s health. There were also concerns about future health outcomes for an additional five patients. For another patient there 6 This

is of course clearly also linked to affordability of health care and to the financial difficulties many faced. Evidently, this is also hugely challenging for specialist services unless payments are negotiated.

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were concerns about the treatment being received at the time of interaction with the doctor due to a lack of communication between specialists and the GP. Nature of sub-optimal care—Past medical encounters and/or treatment The nature of sub-optimal care which had already impacted negatively on children’s health varied substantially. Identified were the following: a lack of culturally appropriate follow-up and care instructions; inability to obtain treatment even though the patient was located in a major metropolitan area; a vulnerable mother’s inability to get to health service for the child’s treatment; missed diagnosis of intellectual disability until the child was a teenager; mother’s inability to access help for her child despite several attempts; carer education not provided amidst custody dispute; inadequate clinical care and poor health promotion including a lack of a written medical plan for the management of a long-term condition; ED patient sent home with minimal examination or safety netting advice when she first presented to ED; and a lack of advocacy until the doctor reporting filled this role. There were also two cases involving foster care that had already impacted adversely on the children’s health; for one child, the inconsistent caregiving arrangements and the lack of appropriate handover of critical medical information had impacted on the child’s health, and in another such case, appointments for the child were missed as a result of poor handover procedures. Finally, the lack of adequate child protection had an impact on two children’s health and wellbeing; one involved a high-risk mental health female adolescent who ended up sleeping on the streets and the other involved the lack of appropriate interventions for domestic violence despite non-accidental injuries identified for the child and the mother’s resultant murder by the father. Nature of sub-optimal care—Concerns about potential future impact Issues which impacted significantly on children and raised concerns about their future health were also varied and included: a lack of assurances from child protection services that the child would be followed up (n = 1); cases where parental decisions against the patient’s best interests were not intervened upon (n = 2); a case related to foster care (i.e. authorities were unable to intervene even though the female patient was “terrified” of a male teenage member of the respite family she was sent to); and finally, an obvious lack of comprehension of information conveyed through an interpreter. Housing A key feature of poor housing conditions (Table 4.11) ranging from issues of affordability, homelessness, to inadequate housing and overcrowding was that many of the families affected were single-parent families supported by the mother. While children were directly impacted in all cases where homelessness was cited as impacting adversely on the child’s health, alarmingly, some cases related to the adolescent patient being homeless and unsupported by family. A total of twenty children/young people was identified as being affected in one way or another by the housing conditions they were experiencing or the lack of housing and there were two instances where more than one theme related to the same patient.

60 Table 4.11 SDH theme: housing

4 Results of Health Inequity Analyses Housing Sub-themes (2nd level) Affordability

Number of cases affected 2

Homelessness

7

Inadequate housing

3

Over-crowding

10

Affordability Lack of affordability for housing was noted in two cases. In both cases, the loss of maternal income caused the mothers to move back to the grandparents’ locality. Both mothers were raising the family on their own and had divorced the father/step-father. In both cases the patients were 14 years old and both suffered mental health issues with the girl suffering depression (along with her mother) and the boy previously on medication for attention deficit hyperactivity but, at the time of presentation, managing his condition with illicit drugs. Homelessness In seven cases (of the total of 61 patients), the child was experiencing homelessness, meaning that the child/young person had no accommodation they could call home (this is the narrowest possible definition of ‘homelessness’). In three of these cases, this was a result of the patients’ mother’s homelessness and these children’s ages ranged from two to nine years. In the case of the two-year-old, the mother was an adolescent herself. Features of these mothers’ lives included single parenthood, mental health issues, and unemployment. In the remaining cases, the patients were experiencing homelessness on their own. The ages of these young people ranged from 15 to 17 and three of the four adolescents were female. These young people’s lives were characterized by major complexities including serious mental health issues, substance abuse, violence—including sexual abuse, self-harm and a lack of support structures. In two cases foster care was arranged and, in another case, the adolescent was living in a women’s refuge. For one of these adolescents, her mental health issues were compounded by the death of her baby due to complications at birth. Inadequate housing Three cases where housing was characterized as poor or was sub-optimal for child rearing were identified. “Poor housing infrastructure” and “poor housing” were cited in the cases of a 14yo boy and a four-month-old boy respectively. The housing conditions were such that they were either impacting negatively on the child’s health or were so poor that hospital staff refused to discharge the child into the mother’s care for fear of adverse effects on the baby. The third case where housing was inadequate related to a 15yo male living in a rented motel room at the back of a pub.

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Over-crowding There were 10 cases where overcrowding was explicitly mentioned as adversely impacting on the patient’s health but was only one of many other factors mentioned. Of these 10 cases, three were noted as involving multiple families occupying a single residence, three cases involved a large single family living in housing not sufficiently sized for the number of individuals (with one family being cared for by the grandmother rather than the parents). In the remaining four cases, overcrowding was not further elaborated on but cited as constituting one of the issues affecting the child’s health among other issues. Patients of all age groups were affected: neonates (n = 2), infant (n = 1), young children (n = 3), child (n = 1), and adolescents aged 14 and 15 years (n = 3). Income and Wealth In previous sections, SDH such as Employment, Housing, and Food, for example, provided insight into the significant lack of monetary resources that numerous children in this study experienced in specific areas of their life which impacted adversely on their health directly or indirectly and which went beyond simply not having much money; instead, it was evident that many families were living in (extreme) poverty. Significant financial hardship was specifically mentioned as impacting on the child in 52 of the 61 cases and in three additional cases, while not mentioned explicitly, it was evident from other references that the child suffered the effects of poverty. For example, in one case, there was reference to unemployment and Centrelink benefits while in another case, the parents were refugees and not entitled to Medicare benefits. While the latter is a medical benefit and unrelated to generating income, not having access to it results in having to pay doctors’ fees, which refugee families would perhaps be ill placed to readily find. In an additional case, the mother of the newborn (treated for neonatal abstinence syndrome) was overwhelmed by multisubstance dependency and significant mental health issues, which do not necessarily definitively indicate evidence of poverty but are certainly factors resulting in an inability to generate income. It was therefore assessed that there were 56 cases where a significant lack of money was directly or indirectly connected to patients’ health. In almost half the cases (n = 25), poverty directly impacted on the child’s condition or their ability to access healthcare services or treatments. In the remaining 31 cases, poverty indirectly impacted on the child, in most cases as one of many key circumstances affecting the child’s health adversely. Secondary Consequences of SDH Two themes were identified as secondary consequences of SDH: Mental Health (of the child/young person and parent) and Substance Abuse (by the young person, parent) (Table 4.12).

62 Table 4.12 SDH theme: secondary consequences of SDH

4 Results of Health Inequity Analyses Secondary consequences of SDH Sub-themes (2nd level)

Sub-themes (3rd level)

Number of cases affecteda

Mental health

Child/Adolescent

27

Substance abuse

Parent

25

Child/Adolescent

10

Parent/Other family member

26

a ‘Number

of cases affected’ relates to all children/young people and other family member affected by mental health or substance abuse. This differs from the total number of children/young people and other family member affected in general, as many of them experienced both mental health and substance abuse issues. This granularity aims to expose greater detail of these families’ experience of the secondary consequences of SDH in their lives

Mental Health Child and adolescent The number of children/adolescents presenting with mental health problems was smaller (n = 22) than the number of children/adolescents ultimately identified as suffering from mental health issues once in contact with health services (n = 27). This comprises just under half the total number of cases examined (n = 61). The youngest of the children suffering a mental health problem was four years old. The ages of the remaining patients concentrated towards young teenagers but there was nevertheless a spread across all ages as shown in Table 4.13. The children/adolescents were almost evenly divided between the sexes with 14 boys and 13 girls experiencing mental illness. Table 4.13 Number of children with mental health concerns by age

Age

No. of children/adolescents

4

1

6

1

7

2

10

2

11

1

12

2

14

9

15

4

16

1

17

4

Total

27

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63

These children and young people suffered from a wide range of mental health issues and oftentimes from more than one disorder. The concern most prominently mentioned was depression of varying severity (n = 9) with anxiety (general, social, separation) following closely behind (n = 7). Five of the children in this group had engaged in self-harm while four patients were experiencing severe mental health issues (hallucinations, psychosis, perceptual disturbance, thought disorder, paranoid delusions, persecutory delusions). Three of these patients were admitted involuntarily due to the severity of their conditions. Low mood and serious behavioural problems (involving aggression or violent behaviour) were experienced by four patients respectively. Three patients had a diagnosis of attention deficit hyperactivity disorder. Two patients suffered trauma and an additional two were living with anorexia nervosa while disrupted sleep patterns were mentioned for four patients. A number of additional mental health concerns were also mentioned, including sadness, suicidal ideation, post-traumatic stress disorder, and agoraphobia. There were additional secondary consequences of SDH impacting on some of these patients’ lives: for example, substance abuse and parents with mental health issues. A small number of the adolescents experiencing mental health issues abused substances (n = 8). The youngest was aged 14 while the oldest was aged 17. Two older adolescents had also been abusing substances during their pregnancies. One or both of the parents of 13 of the patients suffering mental health issues was also experiencing or had experienced mental health concerns. One of the main challenges for many of these young patients was that there was a lack of available services to address their health issues, either due to program gaps (n = 7) or remote living (n = 6), as previously discussed. Parent In 25 of the 61 cases, either one (n = 20) or both parents (n = 5) suffered mental health issues. The majority of mental health issues were identified in relation to mothers (n = 17) of whom 11 were single mothers (with the fathers’ mental health status unknown as it was not reported, as these fathers were not involved at all in the child’s upbringing). There were only two cases where the father was experiencing mental health issues and, in both cases, the father was a widower. In most cases, there was some description of the mental health issues experienced. The most prevalent concern amongst parents was depression (n = 16) with two mothers experiencing major depression while another suffered postnatal depression. In some cases, depression was accompanied by other mental health issues including anxiety, self-harm, and unspecified psychiatric issues in two cases. Other mental health issues experienced by these patients’ parents, as reported by the attending healthcare professionals, included: (borderline) personality disorder, paranoid schizophrenia, and bipolar disorder. In some cases, the description provided was not precise (n = 8) and simply referred to psychiatric issues, psychological stressors, parents with unspecified mental health issues, a family history of mental health issues, or parents requiring mental health support. In 12 of the 25 cases, the parent experiencing mental health issues was also substance dependent (drugs, alcohol, tobacco) with some dependent on more than one substance. In an additional case,

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the mother was suspected to be binge drinking. Substance abuse pertaining to parents and patients is examined in a subsequent section. Carer neglect and abuse was noted in 15 of the instances where parents experienced mental health issues. Of the 15 cases, eight related to neglect, four to abuse, and three to the child’s experience of both neglect and abuse. In all but three of these cases, child protection services were involved. Substance abuse Child and adolescent Ten children/young people were identified as being reliant on drugs (e.g. cannabis, ice). The ages of these patients varied from 5 weeks to 17 years of age. The fiveweek-old boy displayed alcohol abstinence syndrome soon after birth resulting from his mother’s polysubstance abuse. Most of the patients were in their mid-teens, i.e. 14 and 15-year-olds (n = 6) and fewer in their late teens, i.e. 16 and 17-year-olds (n = 3). Three of these patients were dependent on multiple substances including tobacco, alcohol, and drugs. Another three patients were dependent on two substances: alcohol and drugs (n = 2) and tobacco and drugs (n = 1). Finally, three of the 10 were dependent on drugs only. As previously mentioned, eight of these adolescents were also experiencing mental health issues. Parent/Other family member In 26 families, parent(s) and other family members (e.g. grandmother, uncle or brother) were identified by healthcare professionals as abusing substances including tobacco, alcohol, and drugs. Of these parents, six mothers had been dependent on substances during their pregnancy, which included tobacco, drugs, and alcohol and in many cases a variety of these substances. Two of these mothers were adolescent patients, both of whom also suffered from mental health issues. One of the mothers considered here is the mother of the five-week-old boy impacted by the mother’s polysubstance abuse. All of these mothers’ children were newborns or infants except one, who was a ten-year-old and who had been removed from the care of his mother because of her polysubstance abuse. Dependence on substances was restricted to one substance for most parents and other family members (n = 20), two by fewer (n = 5), and three substances by even fewer (n = 2). Where one substance was abused, drugs and alcohol were taken by even numbers and one mother abused alcohol and tobacco. There were fewer individuals dependent on tobacco alone (n = 4). In 14 of these homes only one parent/carer was dependent on substances, in 10 homes both parents or a parent and other relative abused substances, and in two cases it was unspecified who exactly abused substances, as this was noted less specifically. In one case, for example, it was unknown both who in the family abused substances and what substance was abused as the information given by the healthcare professional simply noted ‘domestic substance abuse’. In only two cases did a parent(s) and the patient as well abuse substances, according to the information provided by healthcare professionals.

4.4 Social Determinants of Health (SDH) Table 4.14 SDH theme: social environment

65

Social environment Sub-themes (2nd level)

Sub-themes (3rd level)

Number of cases affecteda

Family

Lack of parental involvement

37

Lack of support networks

Foster care

11

Kinship care

10

Multiple homes

7

For the children/young people

17

For the child and carer

4

For mothers

6

For fathers

1

a ‘Number

of cases affected’ relates to all children/young people (and carers) affected by the various sub-themes identified. This differs from the total number of children/young people and carers whose social environment was considered, as some of them fall under more than one sub-theme. This granularity aims to expose the detail of these children/young people and carers’ social environment

Social Environment Another SDH identified was the patients’ social environment, which was examined in terms of family (and its numerous sub-themes) and a lack of social support networks, broader than the family per se (Table 4.14). Family The sub-theme Family was identified as having numerous sub-themes itself, some of which related to the locus of home care for the child/young person and some of which related to the nature of relationships between parent/carer and child/young person. This third level analysis included the sub-themes: lack of parental involvement; foster care; kinship care; and multiple homes. Lack of parental involvement In this study, ‘lack of parental involvement’ refers to physical or emotional distance from the child/young person’s life so that the child/young person is unable to rely on support of whatever form needed from his/her parents. Parental involvement was lacking in the lives of 37 children/young (Table 4.15). Both parents were physically or emotionally unavailable to 23 of the 37 children/young people, while in 11 cases, the father only lacked involvement in the child/young person’s life. In only three cases was the mother only uninvolved in the children/young people’s lives.

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Table 4.15 Lack of parental involvement in children/young people’ lives Source of lack of involvement

Number of children/young people impacted

Forceda parental non-involvement in dual parental non-involvement cases

Maternal and Paternal

22

One parent forced: 3 (other parent unforced) Both parents forced: 15

Paternal

11

1

Maternal

3

2

37

18

Total numbers a Forced

parental non-involvement relates to non-involvement in the child’s life because authorities or life itself had intervened and removed one or both parents’ rights or ability to care for their child

Dual parental lack of involvement (i.e. both parents) did not always entail complete or permanent absence or inability to engage with the child. For example, in one case, the mother was suffering significant psychiatric issues while the father was away working in a different location. In time, both issues may be resolved so the status of their involvement in the child’s life could also change. Examining the cases where dual parental lack of involvement (n = 22) was noted highlighted three cases in which there was no paternal involvement for the babies of adolescent mums but where the adolescent mums themselves lacked involvement from both their own parents. Two additional cases where both parents were uninvolved in their child’s life related to 15-year-old females who had both chosen to move out of home, one to escape the ‘intense’ relationship with her father and the other to escape sexual abuse from her step-father (and the stated lack of support from her mother). There was a single case where the parents had ejected the adolescent from the family home and were unresponsive to his needs when he was admitted to a psychiatric ward for an extended period, the length of which was due to the absence of a family to take care of him. In 15 of the 22 cases where there was dual parental lack of involvement in the child’s life, parental non-involvement was forced. If we were to include under ‘forced dual parental lack of involvement’ the case of the two teenagers leaving home, the total would be 17 cases. An example of a case where both parents’ non-involvement was forced is offered: the father was not permitted by law to be in contact with the family while the mother was also uninvolved in the child’s life because of mental illness. In this case, the permanent forced non-involvement of the father resulted in a poor outcome for the child, as he was not being brought to appointments, due to the mother’s mental health which was impacting on her ability to care for the children. Of the total number of forced parental non-involvement cases (n = 15) under dual parental non-involvement, the majority (n = 9) (perhaps 10 but not enough information was given) related to parental rights of at least one parent (n = 2) or both parents (n = 7) being removed due to identification of parental abuse or neglect, including such poor parenting skills that the child was placed at risk. For example, the

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67

courts in one case ruled against both parents having full-time care of their child due to non-accidental injuries suffered by the baby (and his older sister). Details relating to the exact circumstances were not always available as demonstrated in another case where parental rights had been removed from both parents, without reasons being provided as the events had occurred earlier in the teenager’s life. Also considered forced parental non-involvement were cases where a parent had died. For example, in one family, one of the parents had died (forced) while the other parent simply could/would not undertake the role of sole parent (unforced), so the child was placed in foster care. In another case, the mother had been murdered (forced) and the father was in jail for the crime (forced) so the child was eventually cared for by an aunt and uncle. Not included in this count was the case of a 10-year-old girl whose father had committed suicide when she was an infant, as her mother was in relationships (with recognition, however, that these relationships were harmful to the child due to domestic violence). In the 11 cases involving only paternal lack of parental involvement, the lack of involvement was more pronounced; in some cases, the father had never met the child (n = 4) or had stopped visiting altogether after the relationship with the child’s mother had ended (n = 3) and in a single case the father did not appear to be involved at all, as evidenced by a complete lack of reference to the father rather than being explicitly stated. In the remaining three cases where paternal lack of involvement was noted, one father was only allowed supervised visits, one had left the home but was referenced as being present at the consultation, and one was unsupportive of his child’s condition, i.e. he did not believe there was a medical issue and was in a custody battle due to the marital breakdown. In the three cases where there was only maternal lack of involvement, this was due to significant mental health issues (and for one mother drug abuse issues as well) in two cases or the mother’s death in one case, hence all non-involvement was forced. In these cases, the fathers were the primary carers and custodially responsible for the children. While parental marital or relationship status need not preclude parental involvement in their children’s lives, it was noted that separation or divorce frequently led to no contact or minimal contact with one of the parents, usually the father. In the vast majority of all 37 cases where parental involvement in the child/young person’s life was lacking, parents were either divorced or separated (n = 23); in an additional case, the parents were on the verge of divorce; in three of the 37 cases, the mothers had died, and there were only two cases in which the parents remained together and were still legally permitted to care for their child/children. In the remaining 8/36 cases, parents either remained together or it was unstated. In these eight cases parental relationship status was inconsequential, as they were not permitted by law to look after their children. Foster care In 11 cases, children/young people were placed into foster care for a variety of reasons, which in most cases related to a combination of parental acts/omissions or circumstances creating an inappropriate home environment for child rearing. The

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reasons articulated for the need for foster care were usually multiple for each child and included: poor parenting skills (5 mentions), alcohol and abuse/neglect (4 mentions each), drugs and mental health (3 mentions each), intellectual disability and housing (1 mention each). The age of children/young people in foster care ranged from 5 weeks to 17 years, with just over half of the children being 10 years old or under (n = 6). All but one of the arrangements for foster care had been initiated by child protection services but, in two cases, the adolescent had left home already either to escape sexual abuse or as a result of a childbirth emergency. These were females aged 15 and 17 respectively. In a single case, the father requested that his child go into foster care because he was unable to cope with raising a child with healthcare needs alone following his wife’s death. This child had started his life in foster care due to both parents’ drug addiction. There was an additional case involving a 16-year-old with significant mental health issues. He had been turned out of the home a year earlier and was apparently unable to receive foster care due to his ‘independen[t] status’.7 Kinship Care Extended family members had either previously cared for (n = 1) or were caring for (n = 9) a total of 10/61 children/young people in this cohort at the time of the child/young person’s presentation. In most instances (n = 8), the involvement of extended family members resulted from action taken by child protection services due to parental neglect or abuse. In only two cases was the rearing of children stated as being co-shared between the mother and other family members without child protection services having been involved. In cases where child protection services had intervened, continued parental engagement was evident in three cases: minimal parental involvement for one child, and in two other cases where re-unification efforts had been made, the parents were re-granted either full or partial access to their child. In the majority of these 10 cases, grandmothers (n = 6) or both grandparents (n = 1) became the carers. Other family members taking on the care of these children were aunts (n = 1); aunts and uncles (n = 1); or unspecified family members (n = 2). In one case there was a shift between family members caring for the child, i.e. the grandparents initially cared for the child but were struggling to cope with this arrangement due to their own circumstances so the child was subsequently taken into the aunt and uncle’s family. Multiple homes This section relates to children/young people moving within the foster care system, children sharing their lives between homes (but excluding child rearing practices in Aboriginal communities), and children who moved in and out of homes themselves. Of the total children/young people considered (n = 61) in this analysis, seven had experienced/were experiencing living in multiple homes; either foster homes (n = 3) or multiple family homes (n = 4). The number of moves these children/young people had made throughout their lives were not always specified precisely. For 7 The

square brackets, [], indicate the missing letter in the healthcare professional’s report.

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69

example, one girl had lived in “multiple” foster homes in 11 years, another 17yo had lived in three foster homes since his early teens, whereas another child had had “various placements” in foster homes in his 10 years. For the children moving between family homes, one child shared his time between his parents’ homes, which were a significant distance from each other; a 17yo mum had moved homes four times since childhood (assuming she had started in her parents’ home); while an 8yo girl had lived between three homes due to parental separation and finally settled with her grandmother; and a 9-month-old shared her time between her mother’s and her grandmother’s, as the mother went through the re-unification process initiated by the child protection services. For five of the 7 children/young people, there appeared to be greater stability with the living arrangements they were in at the time of presentation, as reported by healthcare professionals. However, for others instability remained a key feature and seemed to contribute to the health and significant behavioural issues experienced by some of these children/young people. Even where greater stability may have been achieved, there remained significant related issues with their living arrangements: in one case, while foster arrangements were not commented on as problematic, there were concerns about sexual abuse by a member of the respite family the child had been visiting fortnightly; for another adolescent, there remained significant behavioural issues and the foster parents were concerned given the young man’s age (17yo) and the possibility of him moving out at 18yo. Further examples of complexities were evident in the case of the boy spending his time between parents’ homes, as his biological mother was geographically isolated and presumably having difficulty managing his appointments (in addition to the health issues the parental split caused for the child). Issues were certainly also evident in the case of an 8yo girl whose parents were separated and whose health had been permanently impacted due to living between three homes earlier in her life and the discontinuity with treatment regimens this brought with it. Lack of Support Networks Support networks are taken to include and refer to family, social, medical, school, community etc. supports; in other words, any structures that would provide support for ongoing health and wellbeing issues faced by the child/young person and family. This section focuses on cases where a lack of support networks was specifically mentioned by the healthcare professional as impacting on the child, young person, or parent(s) so it is very likely that many more children/young people and parent(s) would have been lacking support networks at the time. A lack of supports was specifically mentioned by healthcare professionals attending to the patient and family in 28 cases. In 17 of these cases, it was the patient who was identified as lacking supports; in three cases, the patient and mother lacked supports; in one case the patient and grandmother lacked supports; in six cases the mother was identified as lacking supports; and in only one case, the father lacked supports.

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Lack of support networks for children/young people The majority of individuals lacking a range of support networks were children/young people (n = 17) whose ages ranged from 3–17 years, with the majority being teenagers (n = 12). Two of these cases related to adolescent mums who lacked substantial supports at the time of their presentation; this included support from the adolescents’ families and the baby’s father, and social and community supports. All 17 patients lacked emotional support from parents and other family members or community acceptance. Some of these children/young people suffered from the separation of their parents or from their parents’ inability to engage with them due to mental health issues. Two girls were unsupported in relation to sexual abuse. In 15 of the 17 cases, these children/young people had been found to be exposed to a lack of parental involvement in their care, as discussed above. Eight of these 17 children/young people felt unsupported at school, were bullied, or found it difficult to develop friendships. To counter the issues faced by these patients, in addition to the multiple medically-related services made available to them, school counselors or other school personnel were contacted to request their support in most of the cases where the child/young person was still attending school. In one case where the an eight-year-old girl had acquired preventable intellectual and communication impairments, the treating healthcare professional ensured that advice from her speech pathologist, occupational therapist and psychologist was conveyed to the teacher to address academic difficulties (which may also eventually assist with the social exclusion the child also suffered at school). Some children may also have suffered social isolation at school but too little detail was provided to make this assessment. For example, in several cases, it was noted that children were reluctant to go to school, which could signal an issue relating to social connectedness and the ability to fit in, while in other cases the child displayed disruptive behaviours also potentially related to a child’s ability to relate with others. Lack of support networks for the child/young person and carer There were four cases in which both the child/young person and carer lacked support networks. These were complex family arrangements with one involving a grandmother with very low health awareness needing to move hundreds of kilometers away from her home as a condition of caring for her seriously ill grandchild; one case involved the biological mother who appeared to lack significant financial and possibly social supports but who did not accompany the child at presentation, as the child was brought in by the stepmother; the child in this case was impacted by lack of contact with his biological mother following the family split. Another case involved an adolescent mother who was in conflict with her mother, in a custody battle with the child’s father, and unwilling to contact her own father leading to a lack of support networks for her and her child who did not enjoy a strong bond with her mother. Finally, a mother who suffered mental health issues and learning disabilities and was therefore unable to understand the gravity of her child’s condition and needs also lacked supports. Supports for this carer did not appear to be given, possibly due to her non-attendance at the medical appointment.

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Lack of support networks for mothers Six mothers were identified as needing (or having needed) support structures so that their child’s health would improve. Only one of these cases related to a deceased mother and there was speculation about the kinds of supports she had lacked, which perhaps contributed to her murder by her husband. In the remaining five cases, mothers required numerous supports including social and parenting support which was lacking due to a lack of contact with family, physical isolation as a result of remote living, or due to mental health issues. In all these cases, numerous support plans were arranged to provide critical assistance to the mothers but in one case there did not appear to be a clear plan to engage the mother who was uncontactable and whose son required immediate medical attention. Contact with this mother was referred to child protection services who indicated that they would try to follow up. Lack of support networks for fathers Only one father was identified as requiring support networks. This father was now raising his baby on his own following his wife’s death. He had no family or other social supports at the time of the child’s presentation. He was, however, receiving extensive financial supports and was referred to a local parents’ group for social support that was lacking. Transport There were 21 children/young people whose health, or aspects of their lives ultimately impacting on their health, was directly affected by a lack of transportation (Table 4.16). The subthemes that emerged under this SHD included: access to care, impact on schooling, and social isolation. In two cases the same family encountered difficulties accessing care and experienced social isolation; one father presented late putting his infant at risk, while an adolescent was not able to be followed up as he missed his appointment due to transport challenges. This same teenager had been hospitalised without any family attending due to distances and a lack of transport for the family. Similarly, the father who brought his son in late was also experiencing social isolation as a result of the lack of transport. Table 4.16 SDH theme: transport

Transport Sub-themes (2nd level)

Number of cases affecteda

Access to care

16

Impact on schooling

2

Social isolation

4

a One

patient was impacted by more than one sub-theme relating to the SDH of Transport, hence the difference in totals

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Access to care In two of the 16 cases where transport impacted on access to care, there was evidence of transport support provided by healthcare services so that the patients could access services but no specific mention that transport issues had already impacted on these patients’ ability to access care. Conversely, access to care and to subsequent medical appointments was impeded because of transport difficulties in 14 cases. In two of these 14 cases, there was a car available but, in one case, it was unreliable and too expensive for the family to run and, in the other, the father was the only driver, which resulted in the patient’s early discharge due to the father’s pressing work commitments. In an additional case, there were legitimate concerns that the grandmother would not be able to follow up on vital appointments for her infant granddaughter due to a lack of transportation. In only one case did a mother manage to overcome transport issues by leasing a car thus removing the impediments to accessing healthcare services for her child. Access to a private vehicle enabled this mother to keep all appointments for her 17-month-old son, including the metabolic specialist appointments. In one case, the mother was unable to provide up-front transport payments which would have been reimbursed. In this case, it was possible to arrange flights provided without payment for patients unable to afford transport costs from remote locations. Impact on schooling In one case, lack of transportation (in addition to a host of other complicating factors) was cited as resulting in a 17yo young lady abandoning school. This young lady was assisted to reconnect with education and efforts were made with the assistance of the local GP and a community voluntary organisation to advocate for better transport to the region as well as facilities for remote schooling. In another case where school had also been abandoned, the re-instatement of a bus route previously shut down (after healthcare interventions) enabled a teenage female to attend a school she was much happier in and where it was hoped she would not suffer bullying. Social isolation For four patients/families a lack of transportation resulted in social isolation. In one case the teenage girl was unable to remain in close contact with her friends and in the remaining three cases, lack of transport resulted in patients being isolated from their family while in hospital. Family members were either altogether unable to attend the hospital or were only able to visit infrequently. The ages of the patients affected were nine years of age for one female and 14 for two males. Social isolation was also experienced by a young father whose wife had died shortly after giving birth, but it did not appear to be linked with not owning a private vehicle, as the father indicated that he was able to travel where he required using the available public transport in the area.

References

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References 1. Young, J. and R. McGrath, Exploring discourses of equity, social justice and social determinants in Australian health care policy and planning documents. Australian Journal of Primary Health, 2011. 17(4) p. 369–377. 2. World Health Organization. Social determinants of health Last Accessed 30 July 2020; Available from: https://www.who.int/social_determinants/sdh_definition/en/. 3. Blas, E., A. Sivasankara Kurup, and World Health Organization, Equity, social determinants and public health programmes, ed. E. Blas and A. Sivasankara Kurup. 2010, Switzerland: World Health Organization. 4. Council of Attorneys-General, National Plan to Respond to the Abuse of Older Australians (Elder Abuse) 2019–2023. 2019, Canberra, ACT: Council of Attorneys-General.

Chapter 5

Discussion of Findings on Social Determinants of Health

5.1 Introduction The largest section of this research reports on the impact of SHD on patients’ health and wellbeing, as identified by healthcare practitioners in the clinical context. The findings discussed in this chapter relate specifically to the SDH identified in this research. Subsequent chapters will report on the way healthcare professionals addressed the health and social issues their patients faced, the challenges involved, and the outcomes for these children and their families. At the end of each section of this chapter, we ask a series of questions to draw the reader’s attention back to the real children and young people encountered in this research. SDH comprise the complex and inter-related factors that lead to health inequity when power, resources, and opportunity are less accessible to some; unless their impact is recognised and clearly understood, it will be difficult, if not impossible, to develop a multi-pronged and multi-faceted response to reduce health inequity. Recognition of the interconnectedness and impact of SDH alone, however, cannot deliver pathways to reducing their impact, as the most recent Closing the Gap Report has shown [1]. For example, the Australian Government acknowledges that the life expectancy of Aboriginal and Torres Strait Islander peoples is dependant not only on achieving better health outcomes but also on better outcomes for education, employment, housing and income [1]. Despite this understanding, however, the ongoing challenge is to develop comprehensive and cohesive policies that address these wide-ranging factors which impact on and shape these children and young people throughout their lives, and importantly, implement such policies effectively. Links have been firmly established between the social disadvantage and adversity children suffer and children’s physical and developmental health, as well as subsequent adult health [2–4]. A key feature of our cohort’s lives was the interdependence of their health and wellbeing with the broader family and social environment in which they found themselves. At least one aspect of each SDH1 (with the exception 1 See

Chap. 3 for the overview of Social Determinants of Health and the associated Table.

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_5

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5 Discussion of Findings on Social Determinants of Health

of Food environment and Transport) impacted a third or more of these children/young people at the time of their presentation; the multiplicity of such factors which place the child/young person at risk has, unsurprisingly, been shown to require a greater level of support and services [5]. It is important to note, however, that increasing the number of health services to overcome disparities in health outcomes is not the solution in itself; rather, the solution lies in addressing the underlying causes of health inequity [6]. We adapted the Social Determinants Framework described in Communities in Action: Pathways to Health Equity [6] for the purposes of this analysis. The 10 SDH identified through thematic analysis in our work included: Income & Wealth; Employment; Crime & Safety; Education; Secondary Consequences of SDH; Health Systems and Services; Food Environment; Housing; Transport; and Social Environment. This expanded framework of SDH was adopted as we observed that the effects of poverty, unemployment, secondary consequences, such as drug use, (factors recognised by the authors of the Communities in Action: Pathways to Health Equity [6] as requiring greater consideration) were also some of the factors mentioned as significantly impacting on the patients in this study. In this Chapter we attempt to examine each specific SDH separately as they arose for this cohort and we draw on the relevant literature. We do, however, acknowledge that the inter-relatedness of the influences is almost impossible disentangle, as one area of life is intricately related and impacted by other areas. We therefore make no claim to provide insight into the causal structure of these very complex systems based on the data we analysed but we do make reference to the complex interactions and influences throughout the chapter and refer to literature which tackles these intricate issues.

5.2 Income & Wealth [In Australia] The child poverty rate is consistently below the community-wide poverty rate, in most years being below 10%, and in 2017 equal to 8.2%. However, …poverty is considerably more prevalent among children in single-parent families than among children in couple-parent families. In all years, the poverty rate for children in single-parent families is over twice the poverty rate for children in couple-parent families. Indeed, in 2017, the poverty rate for children in single-parent families was 19.2%, compared with only 5.3% for children living in couple-parent families. [7, pp. 44–45]

It is not coincidental that Anglosphere nations like Australia, Canada, the UK, and USA, while wealthy, have considerable wealth distribution disparities and widening poverty gaps compared to many European countries, particularly Finland, Belgium, Slovenia, and Sweden [8]. Such disparities reflect the ideological leanings of successive governments which are mirrored in welfare policies. These policies discourage dependence on welfare and only barely address the very basic needs of people experiencing poverty [9]. There have been repeated calls for the Australian Government to increase the unemployment benefit, which at the time of writing, prior to the COVID19 pandemic, offered A$604.70 fortnightly for a ‘Single, with a dependent child or children’ [10]. It should be noted, however, that other supports are concurrently

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available depending on the individual’s circumstances, as discussed below in greater detail. The opening statement for the section on “Welfare reliance” in the 2019 Household, Income and Labour Dynamics in Australia (HILDA) Survey2 regards povertystricken individuals as a drain on the economy: “Reliance on welfare remains a significant concern for policymakers in Australia…It is associated with significant demands on government budgets and reduced economy-wide market output.” The authors acknowledge the critical role employment plays in the economy and people’s overall health and wellbeing by giving them access to the fundamentals in life such as housing and other ‘goods and services that promote health’ [6, p. 118]. In addition, being employed also contributes to a sense of social belonging and can give people a sense of purpose in life. However, we also believe there is often a greater focus on what people in poverty are not doing to extricate themselves from their circumstances rather than on the social structures that create and perpetuate the existence of generations of people entrapped in never-ending cycles of poverty. Such underlying perceptions that place responsibility and blame on disadvantaged individuals and groups demostrate a concerning lack of understanding and hinder efforts to tackle the social structures that impede rising out of poverty. According to the 2019 HILDA Survey [7], the proportion of the population below the relative poverty3 line was decreasing between 2007 and 2016 but rose to 10.4% in 2017 from 9.6% in 2016. The most prominent issue impacting on the children/young people across all the cases we examined was poverty in the form of material deprivation. In fact, many appeared to be experiencing what some term absolute poverty, i.e. such great income deprivation that the most basic essentials in life (e.g. food, clothing, housing, healthcare) could not be afforded [11]. These challenges would have been magnified as a result of many families being single-parent families [7] with mostly mothers shouldering the burdens, unsupported by the children’s fathers—financially, emotionally, and in the practicalities of everyday life. There is an association between single-parent families and welfare reliance, which is defined as the family’s main source of income being in the form of government income support payments [7]. In addition, many of the challenges cited by healthcare professionals for their patients and their families related to rural and remote living. In Australia, growing up outside major urban areas is associated with greater childhood poverty [12] and with a higher percentage of children (3.4%) experiencing seven or more years of poverty compared to children in major urban areas (1.4%) [7]. Child maintenance support has been found to contribute to a small reduction in poverty in single-parent families [13] but such support, even though mandatory in Australia (albeit with acknowledged compliance issues) [14], was mentioned in only one case, in which the mother was unemployed but receiving child support payments from her ex-partners. One reason child maintenance support may not have been available is because the fathers of these children were likely to have been in equally precarious financial circumstances. Numerous government supports [15] are available to those experiencing hardship in Australia but almost a third of these patients’ families (or the patients themselves) 2 The

HILDA Survey is funded by the Australian Government Department of Social Services. to the same source (HILDA Survey), ‘relative income poverty’ is defined as having a household income below 50% of median income.

3 According

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was not receiving such supports, either because of a lack of awareness of their existence or due to difficulties accessing them. This is concerning and requires further investigation to determine the extent of the issue, as it is likely that individuals with no access to the internet and no access to the physical Centrelink centres may have no opportunity to avail such supports, particularly if they have no one to advocate for them. The complexity of identifying available supports was reflected in the healthcare professionals’ accounts and also experienced by the research team when engaging in the research. Financial supports frequently mentioned by the healthcare professionals in this study included access to housing support, temporary accommodation during the child’s hospital stay, the Service Special Child Care Benefit,4 the Healthcare Card,5 the Youth/Study Allowance,6,7 as well as support to overcome transport issues in relation to healthcare, such as IPTAAS8 and other travel arrangements offered by non-profit organisations. In Australia, most welfare benefits are subject to meanstesting with some exemptions available [15]. However, it has been suggested in studies examining the impact of welfare benefits on health that means-tested welfare benefits are associated with higher levels of stress and exposure to social stigma, both of which pose a risk to mental health and wellbeing [16, 17]. A more recent study could not find evidence for or against this claim but did conclude that generous unemployment insurance9 with features, such as more flexible eligibility criteria and low waiting periods, provides a greater sense of security than that experienced by unemployed people, thus resulting in better mental health [18]. It was not possible due to the nature of the study to determine definitively whether the hardship described by healthcare professionals was associated with entrenched poverty but there were several indications that this may be the case with reference made to intergenerational unemployment, part-time or unstable employment, and reliance on welfare benefits as a main source of income, in the limited cases where 4 The

Service Special Child Care Benefit “is available for a child who is at serious risk of abuse or neglect or the family is suffering temporary financial hardship.” https://www.education.gov.au/ser vice-special-child-care-benefit. 5 “A Health Care Card entitles you to cheaper prescription medicines under the Pharmaceutical Benefits Scheme.” but holders of this card may also receive bulk-billing for doctors’ visits, be beneficiaries of other state or council benefits such as energy bill, transport and council rates discounts, and other healthcare benefits. https://www.servicesaustralia.gov.au/individuals/services/ centrelink/health-care-card/who-can-get-card/what-benefits-are. 6 Youth Allowance is “Financial help if you’re 24 or younger and a student or Australian Apprentice, or 21 or younger and looking for work.” https://www.servicesaustralia.gov.au/individuals/services/ centrelink/youth-allowance. 7 ABSTUDY is “A group of payments for Aboriginal or Torres Strait Islander students or apprentices.” https://www.servicesaustralia.gov.au/individuals/services/centrelink/abstudy. 8 “IPTAAS is the Isolated Patients Travel and Accommodation Assistance Scheme. This is a NSW Government scheme providing financial assistance towards travel and accommodation costs when a patient needs to travel long distances for treatment that is not available locally.” http://www.ipt aas.health.nsw.gov.au/about. 9 Unemployment insurance is ‘…income transfers and employment services made by state governments and/or trade unions to individuals who lose their jobs and are able to work but are unable to immediately find gainful employment.’ p. 88 in O’Campo et al., 2015.

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such welfare benefits were already being accessed. Other factors impacting on these parents’ ability to work, which can lead to or be an indicator of entrenched poverty included remote and rural living, homelessness, and in many cases the devastating impact of (significant) mental health illness and substance abuse. Poverty experienced in childhood is linked to poorer health outcomes ranging from higher mortality rates (also influenced by and contributed to by continued poverty experienced in adulthood), greater incidence of cardiovascular disease, stroke, and type II diabetes [19]. There is also an association between the length of time children experience poverty and subsequent risk of self-harm and engagement in violent criminal behaviours [20]. There is disagreement about the mediating effect of family income on chronic diseases; for example, Case and colleagues [21] suggest that family income mediates the effect of all chronic disease but a more recent study found that asthma was the only condition to be directly impacted by family income [22]. In our cohort alone, there were six cases where infants or young children were experiencing exacerbation of asthma, acute in many cases. An understanding of the relationship between family income and asthma is particularly important for Australia, as Australia’s primary care management of asthma and COPD, as evidenced by the number of avoidable hospital admissions, is currently below OECD standards, joining Hungary and Turkey with the highest admission rates [23]. An analysis of the deaths of 20 children and young people10 in NSW due to asthma between 2004–2013 highlighted common factors in 17 of these patients that may have increased their risk of death: “suboptimal asthma control, presentation or admission to hospital in the year before death, poor follow-up care, poor adherence to medication or written asthma action plan, lack of written asthma action plan, and exposure to tobacco smoke” [24, p. 125]; many of these factors were also observed in our cohort. Concerned about the significantly higher levels of childhood asthma in poor areas with substandard housing, the Cincinnati Children’s Hospital Medical Center, in partnership with local authorities, initiated a program to reduce environmental risks in housing which resulted in the reduction of asthma-related hospital admissions [25]. Other aspects of children and young people’s lives, such as nutrition or the quality of the neighbourhood in which the family resides, could be affected by family income thus leading to poor health outcomes [22]. Furthermore, child development is adversely impacted by poverty [20] with children and adolescents living in poverty underperforming in cognitive tests compared to children/adolescents from wealthier families [26]. In an attempt to pinpoint the childhood period during which exposure to poverty may be most harmful for the child or adolescent’s cognitive development, some researchers have concluded that experiencing recurrent episodes of poverty over many years is more detrimental than experiencing poverty at any specific period of a child or adolescent’s life [26]. The impact of poverty on the child’s development can, however, be moderated if parents engage with children and provide a stimulating and positive home environment [27]. This cohort was not only experiencing poverty but almost never experienced a safe or loving home environment, oftentimes because parents themselves 10 Young

people were up to 17 years of age.

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were facing great adversity. For parents to be able to provide such a home environment, they must themselves not be suffering the strain, poor health, and emotional turmoil that disadvantage presents. It has also been suggested that general health, special healthcare needs, and the socio-emotional competence of infants through to children of school age are impacted when disadvantage surpasses certain levels (threshold effect) [3]. The beginning of life is a particularly important period, as studies have shown that the health of children born into resource-poor families is impacted more severely when they were born with poor health [21, 22]. The youngest in our cohort were not immune to significant levels of many forms of adversity including not only poverty but also such circumstances as abuse, neglect, and the effects of violence, often fuelled by parental substance abuse and exacerbated by mental health issues. For example, the life of a four-month-old was complicated by maternal neglect resulting from mental health and intellectual disability and a lack of both parental skill and involvement from this adolescent mother who was unsupported by the father. This baby was also already being impacted by his mother’s unemployment, inadequate housing, and poverty, with poverty perhaps both a cause and result of such parental challenges. The health and wellbeing benefits that accrue to children, whole families, and communities when mothers are not trapped in poverty are noted in several studies [28]. Policies and programs that help lift mothers out of poverty by teaching them skills and increasing their chances of entering the workforce would provide benefits to the mother herself but also, importantly, to her children. This is particularly important given that unemployment and limited financial resources (measured by “difficulty suddenly raising $2,000 within a week for something important”) have been linked to a greater incidence of partner violence against women [29], discussed further in a subsequent section. In the next section, we turn to issues of employment, which are of course intricately linked to the current section. Box 5.1: Pause to think How can children and young people make it onto an even playing field when they have no access to the very fundamentals in life, such as adequate nutrition during the most crucial developmental stages? How can children and young people make it onto an even playing field when their cognitive functioning may be affected by their social circumstances? What efforts would it take for children and adolescents to one day extricate themselves from poverty and how many would have the ability, strength, and luck to achieve this?

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5.3 Employment The psychosocial stress caused by unemployment has a strong impact on physical and mental health and wellbeing. Once employed, participating in quality work helps to protect health, instilling self-esteem and a positive sense of identity, while providing the opportunity for social interaction and personal development. [30, p. 180]

In around 50% of the cases in this study, healthcare professionals mentioned that employment-related issues were impacting on the patients who had presented. These health professionals raised issues relating to the impact of the child’s condition on parental employment, parental inability to work, limited opportunity for work, and unemployment. While not used by these health professionals or in cited literature, in accordance with international and Australian Bureau of Statistics (ABS) conventions, two definitions are provided for a person’s labour force status when not working [7, p. 58] (bolded parts are our emphasis): A non-employed person is classified asunemployed if that person had actively looked for work at any time in the four weeks preceding the interview and was available to start work in the week preceding the interview; or if that person was waiting to start a new job within four weeks from the date of interview and could have started in the week preceding the interview if the job had been available. Anon-employed person who is not unemployed is classified as not in the labour force. Among people not in the labour force, several distinctions are often made based on the degree of ‘attachment’ to the labour market. This includes identifying the marginally attached— people who want to work and are either available to start work but are not currently looking, or are looking for work but are not currently available.11

Using the above definitions, the proportion of unemployed men aged 18–29 in Australia dropped by 3% from 2001 to 2017 and by only 1% for women of the same age during the same period [7]. Conversely, the proportion of men not in the labour force in the same period rose by 2% while, for women, the reverse was observed with 21% of women not in the labour force in 2017 compared to 25% in 2001 [7]. A substantial number of children/young people in this study (39%) was identified as being Aboriginal or Torres Strait Islander children. In 2005, the then Aboriginal and Torres Strait Islander Social Justice Commissioner, Tom Calma, released the Aboriginal and Torres Strait Islander Social Justice Commissioner’s Social Justice Report 2005 [31]. The Report identified, from a human rights perspective, the basic elements fundamental to achieving equality of health status and life expectancy between Aboriginal and Torres Strait Islander peoples and nonIndigenous Australians within 25 years, with a critical focal point in the approach being SDH [31]. Close the Gap measures include: Child Mortality; Early Childhood Education; School Attendance; Literacy and Numeracy; Year 12 Attainment; Life Expectancy and Employment [1] and the outcomes in these key areas for Aboriginal and Torres Strait Islander peoples compared to those of the rest of the nation have been reported on since 2007 [32]. Annually, the Close the Gap targets have included 11 Having made this clarification, we revert to the use of ‘unemployed/unemployment’ where the literature does not make this technical distinction.

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employment outcomes, seen as a significant contributor to improved health and wellbeing, including contributing to the critical goal of reducing the life expectancy gap within 25 years [32]. Over a decade (2008–2018), the Aboriginal and Torres Strait Islander employment rates increased in only one State (NSW) and Territory (NT) and declined in the rest of Australia [1]. Despite the increase in some jurisdictions, the target to halve unemployment within this decade was not achieved in any Australian State or Territory. In 2018, nationally, the employment rate for Aboriginal and Torres Strait Islander peoples reached 49% compared to 75% for the rest of the Australian population. There was also great variation in employment rates for Aboriginal and Torres Strait Islander peoples depending on whether they lived in major urban centres (59%) or in very remote regions (35%), with the remote and very remote regions displaying the widest employment gap between Aboriginal and Torres Strait Islanders and non-Indigenous Australians [1]. It has been calculated that the health gap between adult Aboriginal and Torres Strait Islanders and non-Indigenous Australians would be reduced to 17% from 27% if they enjoyed the same household income, employment rate, and hours worked (as well as the same smoking rate) as non-Indigenous Australians [33]. Furthermore, health behaviours significantly impacting on health and wellbeing seem to be associated with employment status based on 2014–2015 findings that showed employed Aboriginal and Torres Strait Islander people being “less likely to smoke, less likely to use illicit substances, and more likely to have an adequate daily fruit intake” than unemployed Aboriginal and Torres Strait Islander people [33, p. 33]. Puig-Barrachina and colleagues describe several mediation models which seek to explain the complex mechanisms underlying the relationship between unemployment and poor physical and mental health: the economic deprivation model associates the adverse impact of unemployment on one’s health with the financial strain this brings about; stress theory of unemployment links poor health to physiological changes and risky healthy behaviours caused by the strain of uncertainty; and the social support model, which highlights the social isolation experienced by the unemployed and the reduced mitigating effect of social support, both of which adversely affect one’s health [34]. These authors suggest that additional research must be conducted to elucidate these complex relationships. Unemployment affects both the individual who is out of work and their family in substantial ways. The health impacts of unemployment are significant and wideranging for the individual, with links to compromised physical and mental health including anxiety, depression, suicide and behavioural issues [7, 101]. In fact, a study focusing on SDH inequalities identified greater adverse mental health impacts on certain groups, namely: male manual workers, single mothers, women who are the main bread-winners, and male & female manual workers who receive no unemployment benefits [34]. Unemployed individuals have also been identified as being more likely to be susceptible to conditions such as heart disease [7]. Direct impacts of unemployment on families arise from increased levels of violent behaviours towards members of their family while indirect impacts for the family are experienced through resulting poverty and social exclusion [35].

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83

Being employed is a contributor to people’s overall sense of self-worth and identity [30] as well as financial independence by giving them access to material resources [36]. With an individual’s improved financial independence comes a greater ability to make basic choices that contribute to their own and their family’s health and wellbeing [37] in all facets of life including: the ability to provide food for a healthy diet, to secure appropriate shelter, to make choices about the suburb they live in and where to engage with schooling, to access doctors and pharmacies, and to spend money on medicines. Having an adequate income from employment can influence whether a home has a space that enables hygienic food preparation, whether there is a fridge to allow safe food storage, or electricity to power the essential services. One’s employment status can also influence whether the home is safe or whether it poses a risk to the individual’s or other occupants’ health. Clean, running water for consumption, personal hygiene and the ability to wash clothing and linen can also depend on one’s ability to work. This study evidenced all of the above facets of life being compromised, facets of life which the majority of Australians take for granted and cannot imagine being deprived of. However, employment, in itself, does not necessarily enable parents to provide the basics described above. As mentioned in the previous section, those parents who were employed often had unstable employment arrangements or occasional work, which sometimes necessitated supplementation of income from welfare benefits. In many cases, as discussed previously, families relied entirely on welfare benefits and other government supports, which has been linked to “long-term poverty, social exclusion and other adverse outcomes for recipients and their children” [7]. On the other hand, impeding these children and young people’s parents’ ability to find employment were the limited local opportunities, the lack of skills offered through education, which is recognised as being associated with parental socioeconomic status [20], mobility, homelessness and tumultuous family circumstances often interrelated with mental health issues parents faced and recognised as impacting on income opportunities [20]. In some cases, parents’ ability to work was impacted by the health care needs of their children. This finding contradicts Wei and colleagues’ assumption that children’s health conditions, with the exception of cancer and disability, do not impact on parental income and employment substantially, particularly in countries, such as Australia, with a universal healthcare system [22]. In some cases, the adolescent patients themselves were unemployed after having abandoned school. The health of young people is adversely impacted when they cannot find employment [38] but this is only one of several adverse circumstances in these young people’s lives with limited education, experiencing poverty, and abusing substances likely to have long-term consequences on their health and wellbeing. Box 5.2: Pause to think How can children ever have a better chance at life when their parents are unable to overcome the structural barriers place before them in society?

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How will a young person find employment when s/he is significantly compromised in numerous substantial ways? How is it that a child should be worrying about the financial impact his illness will have on his family?

5.4 Crime & Safety The causes of family violence are complex and include gender inequality and community attitudes towards women... Factors such as intergenerational abuse and trauma, exposure to violence as a child, social and economic exclusion, financial pressures, drug and alcohol misuse and mental illness can also be associated with family violence. These factors can combine in complex ways to influence the risk of an individual perpetrating family violence or becoming a victim of such violence [39, p. 2].

Australian statistics on family, domestic, and sexual violence are staggering (Table 5.1) and the rising incidence of these phenomena is being treated as a ‘major national health and welfare issue’ with recognition that women and children are suffering the greatest effects of emotional abuse and physical and sexual violence [40]. Compared to the general population, Aboriginal communities experience a higher incidence of family violence, which is rooted in the trauma and disadvantage experienced over centuries [40, 41]. The Australian Government acknowledges that the collection of reliable and accurate data pertaining to violence against children is challenging and that current figures likely under-report the true extent of this phenomenon [40]. Figures issued by the Australian Institute of Health and Welfare indicate that, in the years 2016–2017, 611 children aged 0–14 were hospitalised for assault [40]. Of these children, 217 children suffered abuse by a parent while 71 of these children experienced violence by another family member, based on facts about known perpetrators [40]. Family Table 5.1 Victims and nature of violence Women

Men

Nature of violence perpetrated against women and men since age 15

1.6 million

548,000

Physical and/or sexual violence (from current/previous cohabiting partner)

694,000

174,000

Violence (from a current or previous boyfriend/ girlfriend/date)

2.2 million

1.4 million

Emotional abuse (from a current or previous partner)

958,000

247,000

Emotional abuse with assault/threat of assault (from a previous partner)

1.7 million

429,000

Sexual violence

Source Adapted from a 2019 The Australian Institute of Health and Welfare Report [40]

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violence, seen or heard by children, is equally damaging even if the child is not the direct recipient of such maltreatment and there is ample evidence that children do frequently witness violence between adults, with 418,000 women and 92,200 men experiencing violence from a previous partner in the presence of children they were caring for [40]. The incidence of emotional abuse and physical & sexual assault identified in this study is sadly in line with current statistics, with 23/61 children and young people identified as being significantly and variously exposed to such violence; an additional five cases could not be included in this count, as violence was referenced as background information with no further detail for analysis. Extending the scope further to include neglect, as a feature of child maltreatment, almost two thirds (39/61) of the patients were exposed to family and domestic violence, abuse and neglect, bullying, and crime. In many of these cases, the child/young person suffered only one form of maltreatment; in a large number of cases, however, the child/young person was subjected to more than one type and, in some cases, up to five different forms of violence or crime. The level and extent of violence experienced by these children and young people, directly or indirectly, was both confronting and sobering. Many frequently witnessed violent behaviour between their parents or their mother and her partner, many were exposed to violence inflicted on them by others in their immediate circle including relatives, foster family members, or the young person’s own intimate partner; in some cases, the child displayed violent behaviours and some were already engaging with law enforcement. Almost all of the violent acts were perpetrated by adult males and only male patients in this cohort displayed violent behaviours or had started to engage in criminal behaviours. Supporting the pattern observed in this cohort is the fact that 95% of all violence against both men and women in Australia is committed by males [42], highlighting the deep social issues underlying this phenomenon. The complexities of determining whether certain factors contribute to violence or arise from it are profound. Well over a third of parents/carers in this cohort were experiencing mental health problems, and a third of parents abused substances. Mental health issues and substance abuse are contributing factors to perpetrating violence [39, 43] but violence in one’s life can also lead to substance abuse and significant mental health issues, such as post-traumatic stress disorder, depression, and anxiety disorders [39]. In addition to their link with violence, being exposed to household mental health issues and substance abuse in childhood also results in lower educational attainment [4, 44], which often arises in contexts of childhood poverty. In turn, low educational attainment combined with childhood poverty are both risk factors for violence in later life [45]. The link between poverty and poor educational outcomes is concerning because education can mitigate the negative impact of adverse childhood experiences [45], including violence. The literature also exposes the intergenerational cycle of violence highlighting the fact that children/young people who experience violence in childhood may continue to experience it adulthood or may become perpetrators of violence themselves [39, 46]. When identified by health professionals in this study, underlying causes for violence between adults in the household, included psychosocial pressures, alcohol

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and/or drug abuse, financial pressures, and issues of control. Similarly, potential contributors to abusive behaviours towards children and young people were identified as being parental mental illness, extreme financial strains, intellectual disability, low health literacy, children’s exposure to the mothers’ partners, and substance abuse. These potential contributors align well with contributing factors identified in the literature [39]. Childhood exposure to violence, neglect and abuse is often referred to as adverse childhood experiences (ACEs), which also include living in households with substance abuse or mental illness, family dysfunction, and sustained poverty [4, 44]. The implications for these children and young people’s long-term health and wellbeing are significant, as the impact of ACEs is cumulative and leads to impaired physiological, physical, and psychological functioning as well as increased access to GPs, EDs, allied health services and the healthcare system more broadly by early adulthood [4, 44]. The 2016 Victorian Royal Commission into Family Violence [39] highlighted healthcare professionals’ important role in identifying violence against children and women and in helping take steps to protect them from such maltreatment through reporting and referral mechanisms [39]. However, the commission also identified that “…there is a lack of overall cohesion and consistency in the way health professionals respond to family violence. There is no health system-wide approach.”, exemplified by the fact there are only clusters of appropriately conceptualised multi-disciplinary approaches in the broader context of health and law and co-location of relevant services to address violence [39]. Also impacting on addressing family, domestic and sexual violence are instability and uncertainty around secure funding for national and community-led programs [47] causing disruption and raising concerns about the weight governments place on mitigating violence against women and children. Multiple approaches are required to tackle both recovery from violence and the prevention of violence and unless violence against women is successfully addressed, we cannot hope to secure a non-violent environment for children and young people. Foundational components for recovery from violence have been identified as being secure and affordable housing, financial security, and adequate counselling and psychological support to regain one’s health and wellbeing following the trauma experienced [39]. Women’s ability to secure funds and safe housing are also factors in preventing violence against them and their children. The National Plan to Reduce Violence against Women and their Children 2010–2022, known as the Fourth Action Plan, is the final in its series since 2010, and aims to contribute to the reduction of violence by focusing on existing initiatives and addressing gaps; this tepid approach seems to overlook issues previously identified but still not addressed: the underlying drivers of violence [41] some of which arise from persistent community attitudes towards violence [48]. Finally, and importantly, unless the dispossession of land and language, the latter of which is fundamental to culture and social identity, are addressed, we cannot hope to reduce the violence and health inequity in Aboriginal and Torres Strait Islander communities, which are impacted by these in the same way as other First Nations peoples [49].

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There is not only a strong moral imperative to find ways to reduce/eliminate the incidence of ACEs but also a pressing pragmatic need to ensure that finite healthcare resources are used judiciously; that is, by addressing the underlying cause of the health impacts of ACEs rather than simply responding belatedly to their devastating consequences for health and well-being. Box 5.3: Pause to think How can children have hopes and dreams for their future, when they are living in fear and managing, the oftentimes life-threatening, circumstances of their daily existence from a young age? How can children eliminate violence from their lives as they grow up if violence is the norm in their childhood? How can children develop a sense of what harmonious relationships look like so that they may seek them in later life when they have never had these modelled?

5.5 Education As the product of the educational process, an education is the array of knowledge, skills, and capacities (ie, intellectual, socio-emotional, physical, productive, and interactive) acquired by a learner through formal and experiential learning. An education is an attribute of a person. And, although a person may be said to “have” a certain level of education at any particular moment, educational attainment is a dynamic, ever-evolving array of knowledge, skills, and capacities. [50, p. 2]

The bi-directional association between health and education are acknowledged in the extensive literature on this topic. Poor health affects the quality of children’s education in numerous ways, as sick children miss school and are likely to fall behind as a result [51] or, as evidenced in this study, they have difficulties concentrating on and engaging with schoolwork, as a result of the health issues they face, which sees their school performance decline. Health-related concerns affecting patients in this study did indeed disrupt the patients’ schooling in dramatic ways with attendance declining, interrupted, or schooling abandoned altogether. Prominent health concerns contributing to the disruption of schooling for this cohort were mental health issues as well as other disorders and impairments. However, there was also an astoundingly intricate web of other factors that impacted on their ability or willingness to attend school. Not only were these children and young people exposed to issues they themselves faced, such as drug and alcohol abuse, violence, bullying, teenage pregnancy, homelessness, and lack of support networks, amongst other issues, but they were also burdened by an additional layer of parent-related issues impacting on them directly,

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such as parental divorce, the assumption of parental duties towards siblings, parental mental health issues, alcohol abuse, and parental suicide. The association between education and health has been studied over many decades and is uncontested but the mechanisms and mediating pathways are intricate and not completely comprehensible [52, 53]. An early study [54] found that education has both direct and indirect impacts on health; the direct effect was evident even when adjusting for work and economic conditions, social and psychological resources and health lifestyles adopted. These researchers theorised that the very cognitive functions associated with education, such as reasoning, problem-solving, thinking etc. may be protective [54]. It would not be unrealistic to suggest that when a child/young person is impacted by serious health concerns as well as multiple other significant circumstances, as children and young people in this study were, it is less likely that the child would be sufficiently engaged to benefit to the fullest from such cognitive functioning associated with schooling. Education’s indirect impact on health is realised through educated people’s ability to access better jobs, thus reducing the stressors associated with financial hardship, as well as giving people a greater sense of control over their life, greater social supports, and improved lifestyle choices such as exercise and reduced smoking [54]. Building on this work, some researchers have proposed the human capital theory, which goes beyond the impact work and financial prosperity have on health mediated by education [55]. According to human capital of learned effectiveness theory, education has a positive effect on health in three ways [55]: first, it enables people to bring together a variety of behaviours which promote good health to form a coherent healthy lifestyle. Examples of this include the fact that better educated people are more likely to smoke less, drink less excessively, exercise, and have a healthy weight; second, education also leads to greater personal control over one’s life and individual agency, as increased educational attainment reduces the likelihood of helplessness and loss of control by developing an expectation that people can control their life through the actions they take, which ultimately leads to the adoption of healthy behaviours. Given the multiplicity and multi-factorial impacts on the lives of the patients in this study, it could not be guaranteed that children faced with such serious, often life-threatening circumstances could benefit from the education they were receiving. Third, according to this theory, education has a positive effect on health as more educated parents who have adopted healthier lifestyles and who have a high level of agency are more likely to impart such behaviours onto their children [55]. In our study, a lack of parental education was associated with minimal awareness some parents/care givers displayed regarding the impact of their behaviours on the children (for example, relating to smoking, drug and alcohol abuse, quality of food provided, inability to appreciate the gravity of the patients’ conditions etc.). This is supported in the literature with low parental literacy being associated with low health literacy, which in turn impacts negatively on children’s health outcomes [56–58]. It is possible, however, to reduce the impact of low health literacy through the provision of appropriately written materials and short counselling and educational sessions, which assist in changing parental behaviours, including adherence, better dosing, and correct medicine preparation [56].

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Parental involvement in school-related activities in the home has a substantial impact on children’s overall performance [59] but that is likely to be difficult if parents themselves lack education. Maternal education specifically has been shown to be key to children’s education and health; it is strongly associated with children’s educational attainment and closely correlated with a child’s cognitive functioning in adulthood, as maternal education halves the risk of cognitive decline or dementia even when paternal education is taken into account [60]. The children/young people in our study did not have the privilege of enjoying such maternal support, as these mothers seemed to display low educational attainment and low health literacy. In addition, many were themselves suffering health-related issues as well as the impacts of numerous identified SDH. A systematic review and meta-analysis of quasi-experimental studies of compulsory schooling laws from 1990 to 2015 found that mortality, smoking, obesity, and perhaps also the prevalence of hypertension, are inversely related to increased educational attainment [52]. However, the relationship between education and health may differ depending on the context and the historical factors associated with education. In the Australian context, for example, mainstream school programs historically stamped out Aboriginal and Torres Strait Islander languages, laws, and culture, which has impacted on the health and wellbeing of these peoples [28]. Appropriately engaging Aboriginal and Torres Strait Islander children/young people in the educational system remains a challenge [28] and this has devastating effects on their health and wellbeing into the future. Universal access to early childhood education programs is available in all Australian States and Territories entitling children to at least 600 hours of quality early childhood education programs in the year before they attend school [61]. These programs aim to contribute to children’s developmental readiness for school. The 2017 figures, however, indicated a significant difference between enrolment rates for Indigenous children (97%) and attendance rates, which dropped to 68% Australiawide with great variation between States and Territories [61]. Lower attendance rates in early childhood programs were also noted in areas of greater social disadvantage and attendance was also impacted by remoteness[61].12 Furthermore, the quality of services in areas of greater social disadvantage was found to be slightly lower than in less disadvantaged parts of the country with some services not meeting the National Quality Standards (NQS) [61]. In addition to the profound role that education plays in children/young people’s lives, schools themselves can also perform a critical role in promoting an understanding of and involvement in healthy behaviours associated with food and physical activity [33]. The food programs that some schools adopt can be life-sustaining in poverty-stricken communities, as demonstrated in our study where the only nutritious meal one child had was offered by the school. Even though there is recognition of the link between health and education, sustained efforts at State and Federal levels, in Australia and elsewhere, to forge 12 In fact, rather than improving, general school attendance rates throughout Australia for both Indigenous and non-indigenous children decreased by approximately 1% in the period 2014–2018.

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closer collaborations between the health and education sectors and services have not been achieved [62]. There is evidence, however, that holistic evidence-based approaches to early childhood education, development and health, such as the Challis Model implemented in Perth, Australia, can be achieved at low cost and with proven educational benefits and promising long-term health and community benefits [63]. Early childhood development is known to play a critical role in all areas of a child’s later life and is acknowledged as providing some protections against serious physical and mental health problems later in life [64]. An initiative aimed at contributing to child health and wellbeing is the Australian Early Development Census which collects national data relating to five areas of early childhood development: Physical health and wellbeing, Social competence, Emotional maturity, Language and cognitive skills, and Communication skills and general knowledge along three dimensions: children developmentally on track/at risk/ vulnerable [65]. Any evidencebased educational efforts that support holistic early childhood development that can be deployed at low cost across Australia should be urgently considered. Box 5.4: Pause to think How can we hope to see children cognitively and emotionally develop unencumbered by the disadvantaged they have been born into? How can children focus on basic knowledge attainment such as numeracy and literacy when their priority is to defend themselves from the brutality of their reality? How can children develop skills such as analysing and solving problems and implementing plans that will help them achieve a better life if their basic needs are consistently not being met? How can children get a sense that they are in control of their futures if they don’t get the chance to learn about themselves, their capabilities, their ambitions, their potential?

5.6 Secondary Consequences of SDH Mental Health Determinants of mental health and mental disorders include not only individual attributes such as the ability to manage one’s thoughts, emotions, behaviours and interactions with others, but also social, cultural, economic, political and environmental factors such as national policies, social protection, living standards, working conditions, and community social supports. Exposure to adversity at a young age is an established preventable risk factor for mental disorders. [66, p. 7]

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The Constitution of the World Health Organization acknowledges that health and well-being necessarily incorporate mental health as an integral part: “health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” [66, p. 7]. Some groups of individuals are more likely to experience mental illness as a result of the circumstances and environments which they are exposed to and in which they live (rather than as a result of an “inherent weakness or lack of capacity” [66, p. 6]). Such circumstances and environments relate to poverty, chronic health conditions, maltreatment and neglect that infants and children suffer, adolescent exposure to substance use, being a member of a minority groups or indigenous populations, or experiencing discrimination and human rights violations, amongst other issues [66, 67]. Before turning to mental health, in previous sections we focused on poverty and the significant impact of violence on children and young people’s lives, as poor mental health is partly associated with exposure to such adverse childhood events [67] and a lack of nurturing during important developmental years [68]. The children, young people, and parents in this research were exposed to a number of such circumstances and environments. Mental health of child/adolescent The most prevalent mental health disorders experienced by Australian children and young people include attention deficit hyperactivity disorder (ADHD) (7.4%), anxiety disorders (6.9%), major depressive disorder (2.8%) and conduct disorder (2.1%), with percentages based on 2017 population estimates (most recent data available) [69]. The children and young people in this study often suffered more than one mental health issue, with depression of varying degrees of severity being the most prevalent,13 followed by anxiety disorders, and in equal numbers severe psychiatric conditions, conduct disorders and low mood, while ADHD and post-traumatic stress disorder were cited less commonly. The limited prevalence data available for mental illness experienced by children and young people in Australia indicates that the prevalence of most mental health conditions has remained roughly the same in recent decades and that ADHD and conduct disorder have shown small decreases, while the prevalence of depression has increased [69]. Children and adolescents suffering depression are more likely to suffer depression in adulthood and also experience other forms of mental illness [70]. In addition, these children and young people are at greater risk of experiencing suicidal ideation and making or successfully completing suicide attempts [70], a concern also raised in this cohort with female adolescents with depression attempting suicide and and engaging in self-harming. In its 2016 Recommendation Statement, the US Preventive Services Task Force identified a wide range of risk factors for major depressive disorder [70]. The children/adolescents in our study have evidently been exposed to the majority of such factors. These included: “female sex; older age; family (especially maternal) history of depression; prior episode of depression; other mental health or behavioral problems; chronic medical illness; overweight and obesity;…Other psychosocial risk 13 An additional three patients were described as experiencing ‘low mood’, which could be classified as depression if persistent.

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factors include childhood abuse or neglect, exposure to traumatic events (including natural disasters), loss of a loved one or romantic relationship, family conflict, uncertainty about sexual orientation, low socioeconomic status, and poor academic performance” [70, p. 507]. Additional underlying factors identified by health professionals in this study also included child sexual abuse and bullying. The findings in this study relating to the anxiety disorders experienced by these children/young people are supported by the literature; underlying factors that contribute to the emergence of anxiety disorders include a range of adverse childhood experiences such as abuse, neglect, exposure to domestic violence or family disputes, bullying, bereavement, as well as exposure to over-protective or anxious parents and traumatic injuries [71], the vast majority of which were frequently experienced by our cohort. Contact with health professionals can help identify and classify the severity of anxiety disorders and there are numerous treatments to help minimise the impact of such disorders [71]. However, unless the underlying causes are addressed, it is unlikely that mental illness such as these disorders can be appropriately and permanently addressed. In any given year, 14% of Australian children and young people experience mental health issues [33]. Almost half of the children and young people considered in this study were ultimately identified as suffering from mental health issues with the youngest admitted for mental health concerns being six years old and the youngest discovered upon contact with health services as requiring mental health assistance being four years old. Despite the extreme youth of these children, the majority of patients affected by mental illness in our cohort were adolescents. A strong predictor of mental illness in adolescents is exposure to violent behaviours such as child abuse [71, 72], which has already been discussed as a frequent phenomenon associated with the adolescents in our study. In fact, all but five of the 27 children and young people with mental health concerns in our study were exposed to one or more forms of violence (with 10 exposed specifically to abuse/neglect or both). Also a feature in these children/young people’s lives was that education was disrupted either directly or indirectly, due to poor performance, non-engagement, or inability to attend school. Students with higher levels of mental illness are absent from school more days, as could be expected, and achieve less at school, especially in core subjects like maths, English, and science [73]. However, the educational attainment of children and young people suffering from anxiety or depression does not seem to be impacted, while conditions such as ADHD do impact on the child/young person’s educational outcomes [74]. In the previous section, we highlighted the critical role of education in all subsequent areas of a child’s life, including mental health [64]. Australian Federal government research also highlights the significant role that schools play in providing services to young people with mental health concerns [73] and this was evident in the cases examined in our study where teachers and principals referred children with mental illness to healthcare professionals. In our study, schools were also called upon to assist in supporting these patients on their road to recovery, as discussed in greater detail in Chap. 7.

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Mental health of parent Nearly half of the parents/other caregivers in our study suffered from mental illness, with the majority identified as mothers with depression. Some parents’ mental illness was only identified as a result of the child or young person’s contact with the health service but assistance was not always able to be offered to the parent (usually a mother). It is of no coincidence that patients with mental health issues also had parents with existing mental illness. Mental health issues, such as depression, suffered by parents or other caregivers ultimately affect childhood behaviours and health outcomes; furthermore, such exposure has been associated with increased need for access to mental health services for children, poor cognitive development, as well as increased risk of academically-related issues including underachievement [75, 76]. As previously noted, parental mental health issues as well as drug and alcohol abuse have been identified as some of the risk factors linked to child abuse [43]. Depression suffered by a caregiver is regarded as a cumulative risk factor associated with a child being at increased risk of maltreatment as well as repeated abuse and neglect in the first 16 years of life [75]. This was evident in our cases where the parent suffered depression, as a quarter of these children experienced carer neglect and abuse. It has also been shown that parents with depression cannot meet the essential needs of their children adequately, thus making children more susceptible to developmental and behavioural problems in the future [76]. Maternal depression is so closely linked to health outcomes for children that there have been suggestions for screening for maternal depression to “be considered an integral part of a risk assessment for the child…” [77]. Many of the cases examined in our study demonstrated disengaged parents who were less responsive to their children’s needs, including emotional and/or physical needs. Furthermore, limited social support services inevitably put high levels of stress on these parents and impaired their ability to function. In addition to depression, parents in our cohort, the majority of whom were mothers, suffered a range of mental health and behavioural disorders such as agoraphobia, anxiety, violent behavioural patterns, schizophrenia, schizophrenia and bipolar disorder, personality disorders and other unspecified psychiatric disorders. There were also incidents of self-harm, attempted suicide, and one father had already committed suicide. The home environment cannot function as a safe place for the child to develop and begin his/her journey in the world when it is overwhelmed with serious, often untreated, mental illness experienced by parents, who are themselves victims of intergenerational health inequity. There are parenting programs specifically designed to support parents with mental illness to develop coping strategies and build stronger relationships with their children [78] but it may be difficult to access such programs depending on place of residence and availability of such services. Substance Abuse Childhood experience of household substance abuse and mental illness profoundly impacts on physiological and psychological functioning, leads to increased rates of illness, and reduced educational attainment and employment outcomes [63, 79].

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Ten patients in our study were identified as using substances or were physiologically affected by parental use, with one of the patients being a baby suffering neonatal abstinence syndrome. Adolescents in this study experienced family dysfunction and many of their parents were also identified as substance users. Amongst other factors, substance abuse frequently begins in adolescence because adolescents are more likely to be impulsive, take risks, and try substances, a fact associated with stages of brain development [74]. In most of the cases, the patients in ourstudy who used substances were in their mid-teens, i.e. 14 and 15-year-olds, and all but three also either presented as a result of mental health concerns or were discovered to be experiencing mental illness even if presenting for other reasons. It was evident that these young people also had compromised academic achievements, with poor school performance, attendance or abandonment. As previously noted, a strong correlation between parental substance abuse and child abuse and neglect has been found [5], and this was borne out by the findings of this study, as the parents or carers of the vast majority of children/young people in this study who suffered abuse and/or neglect or other forms of violence in the family were abusing substances. Box 5.5: Pause to think How can a child whose life is filled with extreme stressors have the chance to successfully manage their thoughts and their emotions? How can children and young people with mental health issues that are often unaddressed build important social relationships and focus on the aspects of their lives such as learning, which would ultimately enable them to more fully participate in society? How can a child flourish if their parent is experiencing mental health issues that for a long time have been or continue to be unaddressed?

5.7 Health Systems and Services The Australian health care system continues to be characterized… by multiple payers and providers, split between different levels of government and across public and private sectors. The universal public insurance scheme superimposed on this mixed system in 1974 created only a loosely coupled system of health care. It is one that responds well to emergencies and catastrophic events but in other respects is unwieldy and difficult to navigate for both reformer and patient. [80, p. 53]

The themes identified and considered in relation to Health Systems and Services included: Continuity of Care, Inability to access government supports, Lack of communication with healthcare staff, Lack of integration of services, Lack of services, and Sub-optimal care.

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The WHO articulates eight evidence-based paediatric standards of care [81], some of which are: • The health information system ensures the collection, analysis and use of data to ensure early, appropriate action to improve the care of every child. (Standard 2) • Every child with condition(s) that cannot be managed effectively with the available resources receives appropriate, timely referral, with seamless continuity of care. (Standard 3) • Communication with children and their families is effective, with meaningful participation, and responds to their needs and preferences. (Standard 4) • All children and their families are provided with educational, emotional and psychosocial support that is sensitive to their needs and strengthens their capability. (Standard 6) What was evident through the efforts made by the healthcare professionals who treated these children/young people, and sought support and/or treatment for their families, was that Standard 7 of the WHO standards of care (see below) was upheld in almost all cases even when sufficient numbers of healthcare professionals were not always available. • For every child, competent, motivated, empathic staff are consistently available to provide routine care and management of common childhood illnesses. (Standard 7) This study highlights real life examples for children/young people where these standards were frequently sub-optimally met often because of structural issues and gaps in services. Despite the numerous reviews undertaken to examine the Australian health care system and recommend reforms, substantial positive reforms have not been achieved with one explanation being, “Today’s health services and system arrangements are still structured to meet the health care needs of the past–acute illness, infectious disease and trauma [80]. Widely recognized today is the fact that social determinants of health exert a greater effect on health and wellbeing than access to healthcare services alone [82]. This is one of the arguments articulated as part of the ‘Inverse Care Law’ conceptualised by Tudor Hart, a Welsh GP, in 1971 but still highly relevant today [83]: the main determinants of morbidity and mortality are not the availability of health care services, but rather, factors such as housing, nutritional standards, the work environment, education, as well as disruptions caused by war. Importantly, the Inverse Care Law posits that “the availability of good medical care tends to vary inversely with the need for it in the population served” [84]. The Inverse Care Law thus gets to the heart of health inequity and structural injustice. Disruptions to continuity of care occurred in almost half of the cases examined in this study. Issues with continuity of care are well documented with regard to accessing health services in remote locations in Australia [85]. This has additional adverse effects on patients [86], especially those who are already vulnerable due to a host of complex factors in addition to geographical isolation. Patients’ continuity of care is further compromised when they rely on EDs, especially for primary health care needs

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[87, 88]. Some of the children/young people in this study who, by the necessity of their circumstances, relied on the ED, sometimes experienced a recurrence of health emergencies and, in one case, devastating, avoidable, permanent health consequences because EDs are not set up to provide comprehensive and ongoing care for complex chronic health conditions. Other factors that compromised continuity of care for this cohort included parental/carer disengagement and missed appointments. On the surface, these factors may point to irresponsible parenting or care giving behaviours. However, factors underlying such behaviours and actions were considerably more complex than mere irresponsibility. Underlying factors related to transport and financial hardship; tumultuous or challenging family circumstances, such as family violence, parental physical & mental health issues, poverty, and homelessness; and other chaotic home circumstances in addition to geographical isolation and very low levels of health awareness. Such factors have previously been identified both in international studies [89] and in Australian research [90, 91]. The Report on Australia’s health 2018 provides 2016 national level findings from the Survey of Health Care Australia, 2016 (funded by the ABS & AIHW). According to these findings, “Based on self-reported survey results, an estimated 98% of people had a usual GP or usual place of care, and 65% of people with a usual GP had been going to their GP for 5 or more years. Overall, people were positive about their experiences—96% reported receiving excellent, very good or good quality of care” [30, p. 373]. These findings do not seem to represent the experience of many of the patients in this cohort who were unable to avail the services of a GP (particularly a GP who would bulk bill) for their child’s ongoing care. A lack of services and healthcare staff, such as paediatricians [91] specialist paediatric ENT services [90], mental health specialists [85], therapeutic options such as occupational therapy, speech pathology, physiotherapy, and psychology [92] and child protection services [93] is particularly evident in rural and remote locations. Workforce shortages are similarly noted [85], with locums often utilized to respond to gaps. While the lack of services and healthcare professionals was often linked to remoteness in our study, another factor that contributed was program gaps e.g. the number of mental health visits permitted per annum; lack of screening for mental health issues; unavailability of GP bulk billing; and the system’s over-reliance on technology to deliver healthcare. As this study was based on reports by frontline healthcare professionals themselves, it does not address well-documented difficulties experienced by parents and/or children and young people in accessing primary health professionals, nor delays in availability of care [86]. A lack of integration of services was evident in a number of cases in this study. Cited instances of a lack of integration of services included, for example, a lack of clear pathways for some services, complications between health services and child protection services, between healthcare services and other government support services and between healthcare providers and GP services. The resulting fragmentation of service delivery [85, 91] and ensuing problems in communication between healthcare professionals, also noted in this research, exacerbate healthcare delivery for already vulnerable children/young people.

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We only have to examine the pandemic to appreciate the lack of integration of services and its impact but also that change can be effected swiftly if the impetus exists [94]. For example, difficulties with the integration of some services can be overcome with the use of remote healthcare provision such as telehealth. The range of services that can be provided by telehealth to support both clinical care and ancillary activities vital for efficient treatment are wide-ranging. As we have now also witnessed during the pandemic, such telehealth services include: first response; emergency medicine; support for inpatient and outpatient care; indirect services such as interpreters or carer support; non-clinical services such as supervision, education and training; and external providers and support services, such as affiliated health services, Aboriginal Medical Services etc. [95]. The potential for telehealth to assist in paediatric healthcare delivery has been demonstrated for health conditions such as cancer, congenital heart disease, cystic fibrosis, diabetes etc.; mental health; obesity; speech therapy; asthma; and hearing loss, to name a few [91, 96]. If services are available and users are appropriately supported [33], telehealth can provide cost effective solutions to health needs in a timely manner without requiring extensive travel and family upheaval to get to healthcare services is larger centres. However, there are still numerous barriers to the use of telehealth, where appropriate, the most challenging of which is unreliable broadband coverage in rural and remote Australia [91]. An additional issue may also be the fact that appropriate devices are required for tele-health to be feasible, which communities may not readily have access to. Our study also identified difficulties accessing healthcare services or healthcare professionals and support health workers. Health care and system challenges are often worsened by difficulties accessing other government services [97], such as financial supports. Difficulties accessing such services/supports ranged from health care services (e.g. mental health services, imaging, hearing and speech assessments, therapy, mothers’ support groups), professionals (e.g. specialists, Aboriginal Liaison Officers), medications, but also financial supports, such as housing support, accommodation during the child’s hospital stay, the Special Child Benefit, Healthcare card, Youth/Study allowance, the critical nature of which has previously been discussed. Supports with transport also featured as a substantial barrier for some patients to access health care. The lack of such supports ultimately impacted negatively on the patients in a broader sense, as their very basic needs could not be met. This study highlighted not only the range of supports lacking, but also, the difficulty these parents and young people had, firstly, in identifying available supports and, secondly, accessing them without assistance from healthcare professionals. In addition to dire life circumstances impeding their ability to seek out supports, an additional issue was their great difficulty navigating the complex healthcare system. In fact, evidence of the complexity of the task was the difficulty healthcare professionals had navigating the system even though they were immersed in it and actually part of the system. Communication is important in any context, but, particularly in healthcare, it is of critical importance and can sometimes be the deciding factor in health outcomes. So important is communication with patients/families as well as between healthcare professionals and across health service organisations that it is recognized as one

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of the standards of optimal healthcare [98] in the Australian healthcare system. However, this standard is not always achieved, as evidenced in this study, with some healthcare professionals indicating that a lack of adequate communication impacted on the treatment of some patients. Where reasons for ineffective communication were provided, they arose from language and cultural issues, low health literacy, and inter-health professional or agency information exchanges. Language and cultural issues which impact on effective communication are more prominent for Aboriginal and Torres Strait Islander patients and their families and for children and families from non-English speaking backgrounds. Contributing to this is not only the shortage of Aboriginal Health Workers [85] but also the constraints on their availability; healthcare needs are not confined to business hours and we saw the consequences of this with one patient not receiving the medical attention he needed as there was no Aboriginal Liaison Officer available after hours. Aboriginal Health Workers are critical to ensuring that health information is conveyed and understood in culturally appropriate ways as well as ensuring that patients and their families feel safe. Likewise, for families from non-English speaking backgrounds, interpreter services are available over the phone or face-to-face free of charge for patients with Medicare consultations [99]. We saw, however, that some children and young people were not able to access these services depending on their status; for example, a refugee family without adequate language skills could not avail this service as a result of which the child received sub-optimal care. It is not the job of patients or parents to ensure that healthcare professionals communicate effectively information about treatment plans, clarifications about the severity of a condition, dosing instructions, required follow-ups and specialist appointments, to name a few. It is the job of healthcare professionals to gauge the patient/parent needs and to respond accordingly. Suboptimal care was another sub-theme under the SDH Health Systems and Services. Here, we acknowledge that there are several difficulties with the term ‘suboptimal’; first, there does not appear to be a standard definition which attributes the same level of seriousness to the clinical care being described; second, it is difficult to assess which care should be considered ‘suboptimal’ and which care should be classed as ‘substandard’; third, it is difficult to assess how far suboptimal care needs to go before it is considered substandard. One set of definitions provided in the context of surgery is: “Suboptimal: Not quite right; within an acceptable level/margin of error but not a situation with which we would be entirely happy. Substandard: Clearly below the reasonable and competent level that we would wish, as a minimum, to achieve” [100]. Conversely, in the context of paediatric emergencies, suboptimal care is defined as, “…incidents where there was an omission or significant delay in providing a life-saving intervention or the wrong treatment was given, in the opinion of the clinician instructors physically present during the simulation” [101]. Based on these two definitions alone, we see that there is significant difference in the gravity of the action or omission being characterized as ‘suboptimal’. We do not attempt to analyse this further here but note that, in this study, we view suboptimal care as serious enough to warrant urgent change rather than attracting an attitude of acceptance and tolerance. In this work, “suboptimal care”

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referred to care not provided or to an intervention not made even though evidence existed that the child/young person needed medical or social supports to facilitate the improvement of their medical condition. It also referred to cases where future care or an intervention was uncertain therefore causing concerns about the child’s future health and wellbeing. Instances of suboptimal care ranged widely and were mostly historical in nature but with significant impacts on the patients’ health and wellbeing. Examples of suboptimal care included: an inability to access appropriate care, missed diagnosis of intellectual disability, inadequate clinical care and poor health promotion, a lack of culturally appropriate follow-up and instructions, and failures in child protection services and foster care with marked effects on the patients’ health. Families subjected to sustained disadvantage are perhaps at greater risk of receiving suboptimal care, as they are less able to navigate complex healthcare systems, to robustly advocate for their child, to seek out supports, and often to sustain their attention on the child’s health concerns due to significant turmoil in other areas of their lives, the impact of which this research has abundantly demonstrated. Childhood is a critical time to optimize the potential of each child and effective health systems and services are essential, especially for vulnerable children. Deficits in timely interventions perpetuate health disadvantages with far reaching implications for that child [91], their family, community and potentially the next generation [97]. It was encouraging to see the effort reported in addressing health systems and service difficulties in this study. Health professionals’ significant additional effort to address the specific issues of health inequity with regard to health systems and services is examined in Chap. 7. Box 5.6: Pause to think How can a child flourish when her health and wellbeing depend on others who are themselves struggling to cope? How can a child achieve his potential when his basic right to appropriate healthcare is obstructed by the complexity of the healthcare system? How can a child thrive if the people she trusts to care for her in sickness are victims of systems that fail again and again whenever she needs help most?

5.8 Food Environment The food we eat plays an important role in our health and wellbeing. Good nutrition contributes to quality of life, helps maintain healthy body weight, protects against infection, and reduces the risk of chronic conditions and premature death. Chronic conditions—often linked with a poor diet—are the major cause of ill health in Australia. [102, p. viii]

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The Australian Dietary Guidelines recommend the consumption of five food groups whose minimum serves per day differ depending on age group and sex: vegetables and legumes/beans; fruit; grain (cereal) foods; lean meats and alternatives (poultry, fish, eggs, tofu, nuts and seeds, and legumes/beans); milk, yoghurt, cheese and (predominantly) reduced fat alternatives [102]. Overall, as Australian children grow up, their recommended nutritional intake declines in quantity and the quality of nutrition also appears to decline with a steady increase in discretionary foods,14 added sugar intake, saturated and trans fats and with sodium intake at much higher levels than recommended across all age groups [102].15 According to the Nutrition across the life stages Report, Children aged 2– 8 years generally exceed the recommended amount of fruit intake while children aged 9–13 approach the daily requirement and young people aged 14–18 fail to meet the required daily serves for fruit and all other food groups. No age groups achieve the daily recommended serves in any food group. In addition to exceeding the daily recommended intake of fruit, children aged 2–3 also exceed the recommended intake of dairy products foods [102]. From ages 9–18, there was generally a low prevalence of dietary folate equivalents and iodine intakes and, for girls, inadequate iron and calcium intake increasing with age [102]. Overweight and obesity increased with age (starting at 21% for 2–3 year-olds and reaching 40% for 14–18 year-olds) but there were no statistically significant differences between Aboriginal and Torres Strait Islander children and non-Indigenous Australians. Adults aged 19–30, of whom 47% are overweight or obese, follow similar patterns: they do not achieve the daily recommended serves in any food group, instead getting 36% of their energy from discretionary foods, have inadequate intake of calcium and iron but seem to consume marginally lower levels of added sugars and saturated and trans fats [102]. These statistics paint a grim nutritional landscape for Australian children and their young parents but do not reveal the level of under-reporting or the true extent of food insecurity for under-privileged Australians; what is known, however, is that the quality of food and nutrient intake generally declines in remote areas while levels of obesity increase [102]. The health of just over a quarter of the patients in this study was affected by poor nutritional intake, which was evidenced primarily in young children but also some in their early teens. The impact of these patients’ diets ranged from mild to extreme and impacted their health and development in potentially long-lasting ways with infections, anaemia, malnutrition, failure to thrive, developmental delays, and obesity cited as outcomes. Main reasons cited by health professionals for patients’ poor nutrition were difficulties accessing food due to poverty, parent or carers’ low levels of nutritional awareness linked to either low health literacy, cultural reasons, and poverty or a combination of these. Similarly, the underlying reasons for four children/young people identified as being overweight to morbidly obese included low health literacy 14 High energy, low-nutrient foods which do not contribute to meeting one’s daily nutrient requirements. 15 A variety of data sources were used in the above Report with the main one cited as the Australian Bureau of Statistics (ABS) 2011–12 Australian Health Survey.

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and educational levels leading, in one case, to the carer’s inability to appreciate the extreme harm to a three-year-old (also requiring CPAP) from over consumption of discretionary foods despite numerous discussions, which were described as “often challenging”. Healthcare professionals sometimes present behaviours relating to overweight and obesity as relying entirely on personal choice [25] thus shifting the blame directly onto patients or their carers. This carer, however, did not have access to healthy, affordable food, which may have impacted on the choices made for the child. It was not possible to gauge the effectiveness of healthcare communication with these parents/carers, who may have required diverse ways of communicating the impact of poor nutrition, in more than one meeting, even if this is time consuming. The time spent to help parents understand the importance of nutrition pays dividends in the long run and some creative thinking needs to be deployed. For example, where there is low health literacy, it may be more effective to present the information in a pictorial format. In addition, the resources and services available in larger cities, such as referral to a dietician who can also provide nutrition education, may be limited to non-existent in rural and remote communities. It is important to appreciate, however, that even if poor health literacy was a key factor in our cohort, it may not reveal the full set of underlying issues. Other factors such as a lack of fresh affordable produce, parents’ own health status, and tumultuous home environments can also contribute to less attention being paid to the child’s nutritional needs. In addition to the issues arising from these patients’ poor nutritional status, these children and young people were also affected by other domestic and life issues, such as disruptive and stressful home environments involving violence, alcohol, and drug use or extreme environmental issues such a contaminated water supply and extreme poverty. It is important to remind ourselves that the cases analysed may not have identified the food insecurity experienced by the entire cohort, which is certain to have been even more extensive. For example, homelessness was mentioned in several cases but nutritional issues were not raised in those cases even though there is evidence that food insecurity is often experienced due to homelessness [103]. The difficulties arising from remote living and its impact on families’ ability to source nutritional foods is recognised as a major health issue in Australia [91]. To tackle this issue and make healthy food available to remote communities, 100 stores under the Northern Territory Community Stores Licensing Scheme operate in NT and an additional 37 Australian Commonwealth stores operate in three States and Territories with the greatest number of remote communities: NT, SA and WA. These stores known as ‘Outback Stores’, not only supply fresh fruit and vegetables16 and contribute to developing critical healthy food strategies for these communities but also give rise to much needed employment opportunities [61]. The Closing the Gap 2019 Report highlights the following promising contributions: “In 2017–18 Outback Stores-managed stores sold 430 tonnes of fresh fruit and vegetables, and created 402 Aboriginal and Torres Strait Islander jobs in communities. Through store-based sugar 16 There is no indication of the cost associated with fresh produce in the cited source, which could be considerable given the distances travelled to deliver it.

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reduction strategies, there were 7.6 tonnes less sugar consumed from sugary drinks in these communities” [61, p. 137]. Such initiatives are critical, especially given that consumption of fruit for young people 15 years and over dropped from 49% in 2012–13 to 42% in 2018–19 and that young people 15 years and over continue their excessive consumption of sugary drinks [104]. Food stores alone, however, will not provide the solution to poor dietary intake which affects children, young people, and adults alike, particularly those faced in Aboriginal and Torres Strait Islander communities. Unless the underlying issues of poverty and poor educational attainment are addressed, we will continue to witness young people’s lives further compromised by the food they are not able to access for the reasons stated above. Box 5.7: Pause to think How can children’s brains and bodies develop if they cannot access nutritious food? How can children concentrate at school when they go without food? How can they fortify themselves against health impacts which undermine their whole futures? How can children thrive in life when they go to bed hungry many a night? How can they learn healthy eating habits when their parents, equally disadvantaged, do not know themselves?

5.9 Housing Housing is an important factor in the health and wellbeing of Australians. Housing provides shelter, security and privacy and can support social, economic and community participation (AIHW 2018). However, not all Australians have the same access to safe and affordable housing. Social housing is one component in a suite of policies and programs that address the housing needs of Australians. [105, p. 2]

For the vast majority, housing issues such as overcrowding, homelessness, or inadequacy of the lodgings are foreign concepts and potentially hard to fathom. Yet, a third of children/young people in this study were affected by housing-related issues which were impacting on their health and wellbeing, according to the healthcare professionals attending to them. Half of these children/young people were affected by overcrowding, while a substantial number were homeless- either young children with their mothers who suffered mental health issues, or adolescents, most of whom were female. These young people’s lives were characterised by serious mental health issues, substance abuse, violence (including sexual abuse), self-harm and a lack of

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support networks. Inability to continue to support independent living resulted in two cases when the mothers lost their income, forcing them to seek shelter with family members. There were a few cases where the housing was considered to be poor or was sub-optimal for child rearing, to such an extent in one case that health professionals would not release the child into the mother’s care. For these families their housing reality is a perpetual cycle of crises and uncertainty and a situation that exacerbates underlying health issues, undermines cognitive development, physical and emotional health and wellbeing and which places children, young people and their families in unsafe living environments. Home ownership itself for these families is, no doubt, a distant concern, as they deal with the harsh reality they face on a daily basis in one of the world’s most affluent countries. Home ownership is a deeply rooted aspiration Australians have held for many decades. In recent decades, however, it has become a distant and unattainable dream for an increasing number of Australians. In addition to serving as wealth creation and a symbol of social success, a place to call home has deeper significance for our psyche; it enables us to set down roots, gain a sense of stability and security, structure our lives and set plans forth for our future. Our sense of achievement and self-worth are boosted and we gain the opportunity to improve our local social connections with neighbours and local businesses alike and join the community thus increasing social inclusion and cohesion. Having sufficient funds or assistance to purchase a home in a neighbourhood of our choosing also has critically important and enduring flow-on effects for all aspects of a family’s life [106]; families can choose the area where sufficient services and healthcare resources are available, where employment opportunities are available, where access to food will be secure, and where schooling for their children will enhance their children’s prospects. To illustrate the significance of the area in which we live, we provide an example in relation to education. Evidence suggests that good quality schooling can significantly reduce the effects of disadvantage and that educational attainment is a protective factor against poor health and involvement in criminal activities; education enhances a child’s opportunity to access better employment in adult life leading to better financial prospects [106]. In addition to the substantial benefits listed above, a home provides safety from fellow humans and the elements; more importantly, however, it provides the privacy all humans need to be able to develop and flourish as individuals and as social beings, protected from the scrutiny of others [107–111]. Many of the families in our cohort are excluded from such dreams of home ownership and they are, at present, excluded from the recognised health and wellbeing benefits associated with stable, secure, and safe housing. They are even further removed, and may never achieve, securing housing in more affluent areas, which, in itself, confers significant health benefits when compared to living in disadvantaged areas [6, 106]. Housing affordability has been highlighted as a significant problem in Australia in recent years. In 2018,17 all five major housing markets in Australia were classified 17 The 15th Annual Demographia International Housing Affordability Survey reports on 309 housing markets in metropolitan areas in Australia, Canada, Hong Kong, Ireland, New Zealand, Singapore, the UK and the US in the 3rd quarter of 2018.

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as ‘severely unaffordable’ with a total number of ‘severely unaffordable’ housing markets world-wide being 29 (out of the total of 309 housing markets) [112]. For a country the size of Australia (7,686,850 km2 ), it is inconceivable that home ownership is not available to all; steep house and land prices usually result from a scarcity of land; however, according to the Reserve Bank of Australia, prices are instead driven up by government policy, namely zoning restrictions, which affect both single dwellings and apartments in major Australian cities [112]. Other contributing factors to housing unaffordability in Australia from 1985–2010 were strong demand for housing bolstered by strong economic growth and increases in population, easily accessible finance, and tax and well as other home ownership incentives [113, p. 235]. The most recent Australian Income and Housing data aiming to measure levels of housing occupancy and associated costs covers the years 2017–2018. While still prevalent, home ownership in 2017–2018 decreased by two percentage points to 66% since 2015–2016 (68%) and rentals increased from 30% in 2015–2016 to 32% in 2017–2018. Rental costs per week were A$366 in 2017–2018 with no notable change since 2015–2016 and 20% of renters’ gross weekly income was consumed by accommodation costs. While the average number of occupants per household remained at 2.6 during this four-year period, 4% of households (i.e. 1 in 20) were short by at least one bedroom to accommodate all the occupants in their household [114]. To cater for those in greatest need, Australian states and territories offer three social housing programs: public housing; Indigenous housing, which is state owned and managed; and Indigenous community housing, owned and managed by Indigenous community housing organisations or remote Aboriginal and Torres Strait Islander councils [105]. A forth program, community housing, is run by not-for-profit organisations with support from governments [105]. The focus of these programs in recent years has shifted to people experiencing homelessness, those who have a disability, or are victims of family and domestic violence rather than those who cannot afford housing at market rates [105]. One of the aims in this shift in policy focus is to try to address issues such a homelessness rather than simply manage the crisis people find themselves in [115]. In June 2018, around 419,000 dwellings accommodated 785,000 Australians with housing allocation pending for 195,200 households during the same period [105]. The pandemic response to homelessness in some jurisdictions has demonstrated that homelessness can be tackled efficiently and swiftly if there is political will [116]. In addition to these four main programs, there are several housing assistance programs delivered through the Department of Social Services. The federal, state/territory, and local governments all influence the housing market at a policy level but states/territories bear the greatest responsibility for housing and homelessness while the federal government contributes several billion dollars to programs and schemes annually (approximately A$4.6 billion per annum for rent assistance and over A$1.5 billion per annum in contributions to states/territories for the National Housing and Homelessness Agreement) [117]. These figures point to attempts to

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reduce the effects of poverty and raise the quality of living for those most disadvantaged. Such measures, however, seem counter-intuitive given that it is government policy that has so significantly reduced housing affordability; further adding to the financial strain experienced by many is the fact that high land and house prices are associated with increases in the general cost of living [112]. A large proportion of individuals who are excluded from the property market are Aboriginal and Torres Strait Islander peoples with features of their housing reality and experience including overcrowding, sub-optimal housing, and homelessness [118]. These were all features identified as impacting adversely on children’s health and wellbeing in our cohort. Australia is also faced with a unique housing challenge as a result of the remote and very remote communities which are at great distances from major urban centres, driving up construction costs and limiting the availability of construction workers [119]. A large proportion of the population in remote and very remote communities comprises Aboriginal peoples who, as a result, experience similar adverse effects to First Nations Peoples in Canada and Native American peoples in the US [118, 120]. Some of the unique issues associated with remote living relate to the uneven distribution of Australian Aboriginal peoples who are more likely to live remotely than in large urban centres that offer increased services; in addition to the shortage of housing in such remote areas, the size of available housing does not always take into account cultural and familial responsibilities which lead to greater mobility for segments of Aboriginal populations thus leading to overcrowding when families accommodate mobile members of their extended families [119]. In addition, the housing that is available fails to cater for older members of the extended family, cohabiting with younger families, who require separate quarters; the available housing also fails to take into account cultural requirements related to the exclusive use of bathrooms by only some members of the family, the need for open design to accommodate indoor/outdoor living and cooking, as well as sufficient secure storage for all family members [119]. Such design oversights contribute to overcrowding and disaffection expressed by tenants of social housing programs [105]. On paper, the overcrowding of a mere 5% of all social housing may seem insignificant but overcrowding was found to be 3 times as common in the smaller program of state owned and managed Indigenous housing [105]. The WHO reminds us of the serious impacts on health arising from suboptimal housing and overcrowding: “…major factors in the transmission of diseases with epidemic potential such as acute respiratory infections, meningitis, typhus, cholera, scabies, etc. Outbreaks of disease are more frequent and more severe when the population density is high” [121]. The current Covid-19 pandemic poses a very serious threat to disadvantaged people precisely because of sub-optimal living conditions, including homelessness, which deprives these people of the opportunity to isolate and stay safe [144].

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Box 5.8: Pause to think How does a young person living on the streets secure the food needed to sustain himself/herself? How does a homeless mother feel when she is unable to offer her child a secure and safe environment? How does a child develop in an environment where he has no personal space and, as a result, no control over what is ‘his’?

5.10 Transport One potential immediate consequence from living in an auto-dependent neighbourhood is forced car ownership; being the need for households to purchase and maintain one or more vehicles to maintain mobility for participation. Indeed, if a car (or driver) is unavailable in an auto-dependent neighbourhood, opportunities for economic and social participation are drastically reduced, which can stimulate a cycle of poverty and entrapment through reduced opportunities for meaningful employment and skill development. [106, p. 232]

In much of the literature private transport is discussed in terms of harms to health, arising from a prolonged inactive lifestyle, partly due to dependence on our cars, and harms to the environment arising from pollution, with calls to reduce private motor vehicle use and increase the use of public transport, non-motorised vehicles, and walking—collectively known as ‘active transport’ [122]. Active transport may also result in savings without the considerable cost associated with car ownership such as vehicle registration, compulsory insurance, and mechanical upkeep. In 2016, 7.5% of the then occupied private dwellings had no registered motor vehicle [123], which could be viewed as an encouraging move towards active transport. This, however, could not be further from the truth in a country the size of Australia, with limited public transport networks outside major urban centres and a vast expanse of countryside and of desolate landscape dotted sporadically with small or larger remote communities. In this study, just over a third of patients were affected by high levels of transport disadvantage [106, 124] mostly as a result of parents not having access to a motor vehicle or due to living in areas not serviced by reliable and affordable public transport. Some experts extend the definition of transport disadvantage to include the considerable cost associated with car ownership, which is appropriate, especially given that some outer suburbs and rural and more remote areas cannot be accessed by public transport, particularly relevant to the Australian context [124]. Transport disadvantage impacts particularly hard on those already disadvantaged and puts them at further disadvantage because it reduces employment options and opportunities, makes access to educational and healthcare and other services more difficult and also

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contributes to social isolation [124]. In Australia, affordable housing is more likely to be available in the outer suburbs of a town or city and these can sometimes therefore attract low-income individuals/families thus creating hubs of social disadvantage, partly arising from high levels of unemployment and other social phenomena degrading the quality of life in these areas [125]. Reliable transport or the ability to own a car in such circumstances becomes critical to securing employment and accessing services critical to child rearing. It is for this reason that low-income families may contribute a large proportion of their earnings towards car ownership [126]. But these were not the families in our study; the vast majority of families in our study were too poor to even consider car ownership. However, it was clear that the children/young people and their families were suffering the effects of transport disadvantage and that those most impacted were young mothers, older carers, Aboriginal and Torres Strait Islander peoples, and those who lived at great distances from large urban centres or from specialist medical professionals. As a result of their parents’ reduced mobility, many children/young people in our study were unable to access healthcare services and missed critical medical appointments, including with specialists. Even where private transport was available, it was sometimes unreliable or not convenient for a family with only one driver with pressing work commitments critical to supporting the family. In this latter case, it led to the early discharge of the patient against doctor’s orders, a decision arrived at, as a result of the fear for loss of employment. It is devastating for any parent to have to weigh up which option will cause greater harm but when loss of employment due to the child’s hospitalisation needs has occurred once before, there is no doubt even greater fear even if your two-year-old is acutely unwell due to asthma. Lack of transport options led to children and young patients being hospitalised with no support from family thus leading to social isolation at a time when connectedness with family was most needed. Social isolation was also experienced between friends as a result of limited public transport and the unavailability of transport contributed to one young person abandoning school. In two cases, lack of transport options led to both difficulties accessing healthcare and also to social isolation. The importance of transport was also highlighted by respondents in the National Social Housing Survey 2018, which reported on social housing tenants’ satisfaction with their accommodation, with those least satisfied with their access to public transport being Aboriginal and Torres Strait Islander peoples living in state owned and managed Indigenous housing [105], presumably due to distances and reduced services. Even with good access to reliable public transport networks, there can nevertheless be concerns about accessing it for both men, but particularly women [127]. This is particularly so if safety and crime reduction have not been specifically addressed [127]; arriving safely at the train station in one’s locality does not guarantee safe arrival at home when the commuter has to wait for another mode of transport to take them closer to their home. The important role that private transport plays in transforming the lives of parents and their children was evidenced in a single case in our study when a mother of five was able to lease a car and subsequently attend all her son’s appointments for his rare metabolic disorder. While not stated clearly, it appears that this mother received

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appropriate supports to be able to achieve this. The future health of this child could well have been determined by this single, seemingly “small” for most, change in this family’s life. Given the geographical challenges encountered in large countries such as Australia, it is concerning that services such as telehealth have not had broader sustained uptake; such services can clearly address many of the health issues faced by those who live in rural and remote locations, as discussed in a previous section. In recent months, we have seen that COVID-19 has prompted an acceleration of the use of telehealth given the significant travel restrictions required to slow down the spread of the virus. Box 5.9: Pause to think Beyond being an object of fascination for children, a family car can save their life or take it away… How can a child attain his or her full health potential if they cannot attend their medical appointments due to transport issues? How does a parent who knows their child needs medical attention deal with the distress of not having the means to transport him/her to a medical facility?

5.11 Social Environment I was at the post office with my Mum and Auntie [and cousin]. They put us in the police ute and said they were taking us to Broome. They put the mums in there as well. But when we’d gone [about ten miles] they stopped, and threw the mothers out of the car. We jumped on our mothers’ backs, crying, trying not to be left behind. But the policemen pulled us off and threw us back in the car. They pushed the mothers away and drove off, while our mothers were chasing the car, running and crying after us. We were screaming in the back of that car. When we got to Broome they put me and my cousin in the Broome lock-up. We were only ten years old. We were in the lock-up for two days waiting for the boat to Perth. Confidential evidence 821, Western Australia: these removals occurred in 1935, shortly after Sister Kate’s Orphanage, Perth, was opened to receive ‘lighter skinned’ children; the girls were placed in Sister Kate’s. [128] “My grief. Loss of a continuing relationship with my natural parents.” So begins the second journal entry in Deidre Michell’s record of her ‘breakdown’ when she was thirty-three years of age. “Loss of a continuing relationship with my sister and three brothers” continues the entry dated Friday 21 July 1989. Deidre was on extended sick leave from work, seeing a counsellor, and desperately trying to understand what was wrong, why she felt incapacitated although not physically sick. What seemed like a particularly bad bout of depression became a time of intense grieving as Deidre finally mourned the loss of her family thirty years earlier. In later writings, Deidre talks about grief too; she wonders if “the hole in [her] heart can ever be closed up…if the pain can ever go away,” whether the grief “will ever end” since “the depths of it are impenetrable.” [129, p. 75]

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The above accounts highlight the psychological harm and deep trauma suffered by children removed from their families many decades after the event took place. While acknowledging that there is great variability in children’s experience in foster care (depending on what led to it and the experience of foster care itself, stability in arrangements, frequency of moves etc.) research has revealed negative health and socioeconomic impacts in adulthood; for example, an association has been identified between foster care and poorer mental and physical health, lower educational attainment, and greater poverty in adulthood compared to adults who have not experienced foster care [130]. Two dimensions of the children/young people’s social environment were analysed in this study: family and lack of support networks. Under the theme family, we considered the children’s own families by examining the incidence and nature of lack of parental involvement in their lives, out-of-home care arrangements (namely foster and kinship care), and we also identified children/young people who had experienced multiple home placements. The other dimension of social environments, lack of support networks, related to support networks not available to the children/young people, the child and carer, mothers, and finally, fathers. Support networks referred to any structures that contributed positively to health and wellbeing issues faced by the child/young person and family and included family, social, medical, school, community and other supports. Well over half the cohort (61%) experienced a lack of parental involvement in their lives, either in the physical or emotional sense, which was of a permanent or temporary nature. Half of these children or young people lacked involvement from both parents, many lacked only paternal involvement and a small minority only maternal involvement. In some cases, parental non-involvement was initiated by the adolescent in an attempt to escape harmful home environments. Such was the case, for example, for an adolescent who fled from sexual assault perpetrated by her stepfather leading to homelessness for a brief period before she was placed in foster care. We coined the term ‘forced non-involvement’ to characterise those cases where parents were restricted from caring for their child by authorities, usually due to abuse or neglect, or where the parent had died or was so compromised by mental health or other issues that they were unable to care for their child. For some children/young people, one of the parents was not permitted to care for them or had died while their other parent was uninvolved in their lives due to, for example, mental health issues or because they simply did not pursue a relationship with their child. In some cases, the mother displayed a weak maternal bond and was raising the child on her own, with no supports from her own family or the father of the child and with significant financial stress; in one case parenting support was organised to assist the mother to develop the bond with her child that would foster greater nurturing for the child. This analysis highlighted the intergenerational nature of disadvantage and pointed to the lack of supports for parents. Where a lack of parental involvement is due to mental illness, parents who receive the requisite mental health care can also be assisted by mental health services to strengthen their relationships with their children and develop better parenting and coping skills [78], where such programs are both available and known to the health

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professionals. One adolescent in our study with very significant mental illness was turned out of the family home by his parents and they were not prepared to have him re-join the family. This adolescent spent a very extensive period in a mental health facility as a result but appeared, from the account given, to have received exceptionally compassionate care. Something must also be said about this young man’s family. Harsh criticism could perhaps be levelled against the parents if one failed to appreciate the chaos, constant turmoil, and threat to physical and emotional safety that can arise in the home if significant mental illness is not treated. While mental health interventions are available, it is the family which must seek them out in a timely manner before an escalation of family dysfunction occurs. To achieve this, however, the family must have some emotional reserves available, which the vast majority of the families in our cohort did not have. They must also have the knowledge to navigate the healthcare system in order to access these services, which, again, this cohort of parents largely lacked. Here we do not touch on issues of stigma in relation to mental health but acknowledge it as a potential barrier to accessing help. In adolescent mothers, the lack of parental involvement played out in both directions creating an intergenerational effect; the adolescent mother was unsupported by her own parents and she and her baby were unsupported by the father of the baby. There are numerous models to describe and explain elements of family functioning [131] but, in general, it refers to family relationships and the existence or absence of features such as cohesion, good communication, resilience, involvement etc. For adolescent mothers, family functioning plays a significant role in contributing to their competence as parents but also to their levels of satisfaction with parenthood, with positive family environments associated with greater parental satisfaction for the adolescent [132]. The young mothers in our study not only lacked such familial and partner support but were also beset with significant life issues such as homelessness, mental illness, and poverty and, in one case, the death of the baby due to complications to which delays in accessing treatment due to long distances may also have played a role. There were many more ‘fathers only’ than ‘mothers only’ uninvolved in their children’s lives; in fact, some children had never met their father or never saw him again after the breakdown of parental relationships. ‘Maternal only’ non-involvement, however, was of a different nature; in three cases maternal lack of involvement was forced due to death or significant mental illness precluding parental duties from being assumed. Most families experience challenges but, for some, the challenges are so great that interventions by child protection authorities must be made to support the family to overcome circumstances that endanger the life of a child or young person [133]. If such efforts repeatedly fail, formal (i.e. imposed by law) or informal (i.e. with no legal intervention) avenues exist as a last resort to remove children and young people from a home environment that poses serious threats to the child’s safety [134]. While there are numerous types of out-of-home care, our study identified two main types of home-based care: foster care affecting 11 children and kinship care affecting 10 children, the latter of which involves members of the child’s extended family providing care for either short or more extended periods [134]. In recent

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years, out-of-home care has seen a steady increase every year with the most recent figure for children less than one year of age to 17-years-olds at 47,915 (as at 30 June 2017) [134]. The vast majority of these children/young people (93%) lived in home-based care, with 47.2% placed in kinship care and 37.8% in foster care and with Aboriginal and Torres Strait Islander children making up 36.9% of the total [134], an over-representation in the total out-of-home care numbers [135]. In our study, eight of the 10 children/young people in kinship care placements were Aboriginal or Torres Strait Islander children cared for by immediate family, such as grandparents or aunts and uncles. There was evidence of re-unification efforts in some cases so that the mother and father could continue to have some involvement in their children’s lives. Arising from Australia’s dark history of imposed and forced removal of Aboriginal and Torres Strait Islander from their parents from 1910– 1970 is the Aboriginal and Torres Strait Islander Child Placement Principle which acknowledges and responds to the deep intergenerational spiritual, emotional, and physical trauma that Aboriginal and Torres Strait Islander peoples have experienced [136]. The Placement Principle aims ‘to enhance and preserve Aboriginal and Torres Strait Islander children’s connection to family and community, and sense of identity and culture’ by prioritising placements in the following order: ‘within family and kinship networks; non-related carers in the child’s community; then carers in another Aboriginal community.’ and only as a last resort should Aboriginal and Torres Strait Islander children be placed in the care of non-indigenous carers [136]. The Placement Principle has been in place for over 30 years in all Australian jurisdictions but there have been estimates that it is only fully implemented in 13% of placements arising under child protection requirements [136]. This is in contrast with recent national figures which indicate that 72.5% of these children/young people in out-of-homecare have a cultural support plan and that, in 2018, 62.5% of these children were in kinship care or in the care of Indigenous caregivers [137]. There is a commitment by all states and territories, as well as the Australian Commonwealth, to protect and promote the safety and wellbeing of all Australian children and young people through the adoption of the National Framework for Protecting Australia’s Children 2009–2020, which articulates 13 National Standards for Out-of-Home Care relating to formal placements and which aim to ensure that these children are cared for at a consistently high level giving them the same opportunities as children raised by the biological parents [137]. Despite such efforts young people in out-of-home care are more likely to become involved with the justice system, abuse substances, enter parenthood at a young age, experience homelessness and unemployment or underemployment and be socially and economically marginalised [135]. To counter the challenges posed by transitioning into independent living after the age of 18, all Australian states and territories have legislation and policies in place, which differ depending on the jurisdiction, requiring that planning for independent living commences at age 15 [135]. Leaving care plans, however, do not seem to be in place for a substantial proportion of young people, with only around 48.7% of the Leaving Care Cohort aged 15–17 years having engaged in this process, the majority of whom were in residential care arrangements rather than foster or kin care [138].

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Despite the supports officially provided, concerns may nevertheless remain for some vulnerable young people, as evidenced in at least one case in our study where the foster parents had grave concerns about their foster child, aged 17, given his serious behavioural issues. Behavioural problems in the borderline or clinical range have been identified by carers in a longitudinal study as being quite common with 46.3% of the 15–17 year-olds displaying such behaviours [138]. In our study, it was not possible to ascertain in most cases the impact of entering foster or kinship care arrangements but there was some evidence that the stability and absence of immediate danger had a positive impact on some of the children, as further discussed in Chap. 8. What we do know from 2018 national data is that the vast majority of 8–17-year-olds in out-of-home care felt safe and settled (92%), felt a close attachment to at least one family – either the one they were living with or another family (94%), had an adult who cared about them (97%), and had some awareness and knowledge of their family background (90%) [139]. The same data revealed that only 64% were receiving adequate assistance for future decision-making (64%), were supported in taking part in cultural, sporting, or community activities (65%), and had a voice and were listened to (66%) [139]. Stability in a child’s living arrangements is one of the standards in the National Standards for Out-of-Home Care but national data only reports on up to two placements [137] rendering it impossible to ascertain the levels of mobility within the system. There is, however, some evidence that Australian children may experience more than 10 placements during their care [135]. A US study focusing on homelessness found no association between the number of foster care placements and poor mental health (anxiety and depression) leading researchers to conclude that quality of care rather than the number of placements has a greater impact of a young person’s mental wellbeing [140]. This coheres with resilience theory which highlights the protective role that positive childhood experiences, such as supportive relationships and social connectedness (referred to as ‘counter-ACES’), have in countering the effects of ACEs [141]. Nevertheless, constant mobility does disrupt a child’s life in other detrimental ways; in our cohort, there were seven children who were cited as having experienced ‘multiple’ or ‘various’ placements, which can impact on the child’s ability to settle and establish a secure patterning in their life, engage with the same school, and develop friendships [135]. Support networks were cited as lacking in 28 cases, the vast majority of which related to the child/young person, followed by the child and carer, or the mother/carer, and, in only one case, the father. In some cases, there was no explicit mention of disrupted social networks but references to other issues pertaining to the child’s life could be assumed to point to this. For example, there was mention of children not wanting to go to school or displaying disruptive behaviours but no specific mention of problems at school so these cases could not be included in the analysis. The nature of the support networks that were lacking varied; connections were lacking within health, family, and social spheres, including school for some children. By virtue of their personal circumstances, for example, some children/young people experienced social exclusion at school, were bullied, and found it hard to develop friendships. This impacted on their emotional wellbeing and in some cases led to

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disruptive behaviour from the excluded child. Research has shown that an expected response to social exclusion is aggressive behaviour aimed at either one person or a group of people [142]. Almost all of the children/young people discussed above were deprived of a close connection with their parent(s) and/or other members of their family, as shown by the lack of parental and other family involvement in their lives. Facing health and other significant issues without any social connectedness, any emotional support, and any satisfying social relationships has serious long-term consequences on a child’s mental and physical health and undermines a child’s long-term ability to recover from adversity, which in many cases in our study had an intergenerational effect [141, 143]. Studies have shown that such mental health effects can include: depression, anxiety, suicidal ideation or suicide attempts, disruptions to sleep patterns, and lower self-esteem [143]. In addition, physical effects in adulthood can include: higher cholesterol and blood pressure, an increased risk of cardiovascular disease, obesity, and general poor physical health [143]. In this study we cannot definitively comment on broader social connectedness within communities but the information provided by healthcare professionals points to the fact that there may have been a significant absence of social connectedness, social support, and social cooperation for many of the families. Box 5.10: Pause to think When you’re a child, you don’t realise that scars are being formed and imprinted deep within your psyche when parental love and care are not available. It’s only when you look back that the pain surfaces. How do such children fare when they look back? How are children going to contribute to the community later in life if they don’t feel supported by that very same community?

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Chapter 6

Challenges Faced in Addressing the Needs of These Children/Young People

6.1 Introduction This chapter is the first of three chapters that presents findings from the second major area of enquiry in this research relating to healthcare professionals’ response to the identification of a health issue suffered by a child/young person who was experiencing the effects of health inequity. The findings of this chapter (and the subsequent two chapters) are all discussed in Chap. 9. The chapter commences with a brief consideration of the way we conceptualised a ‘challenge’. In treating their patients, healthcare professionals identified numerous issues that impeded their provision of appropriate and timely care. Many of these difficulties related to systemic issues and the need to engage in activities beyond clinical interactions with the patient and the family; for example, many doctors personally identified additional services for the patient and facilitated access to these. A second set of difficulties healthcare professionals faced related to interpersonal aspects of their encounters with patients and their families. Healthcare professionals also noted difficulties patients and their families faced and some families themselves identified impediments to accessing the healthcare system. The chapter presents the wide variety of issues that needed to be faced and overcome so that appropriate treatments, care and supports could be provided both within the context of the healthcare service where the patient presented but also beyond, both geographically and temporally.

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6.2 How ‘Challenge’ is to Be Understood Any impediment, whether temporary or persistent, to enabling the provision of appropriate and timely treatment was described as a challenge. Challenges arose for clinicians trying to provide treatments but also for the patients and their families. For the healthcare professionals, challenges arose from systemic issues related to service delivery as well as from socio-economic factors affecting their patients. For the patients and their families many of these challenges related to their specific socio-economic circumstances.

6.3 Health Professionals The challenges faced by health professionals included time restraints, heavy workloads, searching for accessible treatments, seeking financial support for patients and their families, building trust and rapport, ensuring compliance with treatments, identifying and addressing cultural differences, and displaying appropriate communication skills and knowledge of the healthcare system. A significant number of health professionals expressed their frustration at the workload and time it took them to seek additional avenues for the medical and socio-economic issues faced by their patients. This included calling various agencies, specialists or GPs and negotiating with them to bulk bill due to their patients’ families’ low income, getting in contact with child protection services for reporting purposes, contacting hospitals for discharge information and liaising with other allied health professionals and schools to ensure the best possible health outcome for the patient. Health professionals also expressed their frustration at difficulties accessing appropriate treatments due to geographic distance and financial hardship faced by patients. This again also included time required when making phone calls to different agencies and negotiating bulk-billing arrangements, mainly for mental health treatment, but healthcare professionals did not always specifically indicate whether they received payment for time spent on such activities. An example from our cases was the time a health professional spent trying to access a public clinic for the patient to continue his treatment on Ritalin for ADHD, as this is only obtainable from a specialist. Access to a public clinic was critical in this case, as the patient could not afford to pay a private specialist. Many of the doctors were faced with challenges related to the structure of the healthcare system and inter-relation with supporting services. Some of these challenges included, for example, finding it difficult in their early careers to navigate the healthcare system, difficulties knowing where to access certain bulk billed treatments and investigations, and how to report to child protection services. Building rapport and gaining the trust of the patients and their families when dealing with sensitive information such as sexual abuse, drug abuse, and domestic violence also posed difficulties for healthcare professionals. Once again, they

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reported that this took time, which GPs and other health professionals did not have at their disposal due to high patient numbers. Extensive time demands were associated with engaging the families and educating them on their child’s health, as well as engaging them to attend follow-up appointments to ensure that the patients were not lost to follow- up. Extended consultation periods were a key requirement when engaging with parents with intellectual difficulties and mental health issues regarding their children’s health to ensure the best possible outcome. Doctors also found it challenging to ensure that patients followed the treatment recommended, and, at times, it was difficult to encourage parents to continue costly non-bulk billed treatments, mainly for psychiatric conditions. These healthcare professionals also reported being faced with difficulties when communicating with patients and their families as a result of their non-English speaking background. This challenge also imposed demands on time associated with getting an interpreter on the phone or face-to-face. On occasion, family members or staff were used to interpret related information. Some doctors also reported the difficulty they faced in presenting non-judgmental and culturally appropriate language and treatment options. For example, in one case, the doctor found it difficult working with different cultural interpretations of mental illness while, in another case, the doctor reported that it was challenging to refrain from placing blame on the family in confronting circumstances in order to continue the therapeutic relationship.

6.4 Families A common theme in these cases was patients and families who had a limited understanding of the health care system, of the requirement to seek initial treatment, and the appropriate timing for this, as well as the need to persist with ongoing treatment. This was most observed in Aboriginal and Torres Strait Islander patients. Many care givers expressed their lack of knowledge of the health care system and the difficulties associated with navigating it before receiving assistance from these healthcare professionals. It was common in these cases to identify children/young people with non-engaged parents, mainly those with health conditions impeding their functioning. This posed a significant challenge, as these parents suffered from mental health and/or intellectual difficulties of their own, as well and a lack of health literacy, and financial hardship, which further compounded accessing appropriate and timely treatments for their children.

Chapter 7

Solutions Adopted for These Children/Young People and Their Families

7.1 Introduction Having identified in Chap. 4 the SDH impacting adversely on these patients and their families and having considered the literature that supports the findings in Chap. 5, we now turn our attention to the solutions that healthcare professionals adopted to meet the needs of their patients. The findings indicate that wide-ranging interventions and measures were considered necessary to address the child/young person’s healthcare needs. Some were measures to counter practical aspects of life which impeded the treatment required or to counter aspects of the patients’ lives that had continued adverse effects on them and their families; such measures included, for example, financial support and travel support. Additionally, efforts were made to strengthen continuity of care and extensive efforts were made to identify appropriate care pathways to enable access to additional necessary medical services and healthcare specialists. Families were also supported in multiple significant ways, as there was recognition that the child/young person’s health and wellbeing was intertwined with and impacted by the health of the rest of the family. Many of the parents/carers required substantial support to enable them to adequately care for the child/young person in the short and long-term and/or services to tackle the health inequities they themselves faced. In many cases the healthcare professionals arranged multiple supports to address several areas of the child and family’s life where assistance was urgently required. Efforts were also made to link patients and their families to culturally appropriate professionals, such as Aboriginal Liaison Officers, as well as other areas of the child and young person’s life, such as the education system, as it was identified as playing a significant role in achieving health and wellbeing improvements. Health education was also viewed as integral to achieving better health and such services were offered to a number of parents/carers. In some cases, child protection services were called upon to provide support and expertise in cases of child abuse and neglect suffered by so many of the children and young people in this cohort.

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This chapter ends with a summary of the solutions identified as reducing intergenerational health inequity and tailoring services to the needs that patients displayed.

7.2 Types of Solutions This section examines the solutions offered to patients and their families in a number of health-related areas to improve continuity of care, to support to patients and families, and to link them to healthcare and other services. It examines arrangements required in relation to foster care and child protection services and also presents efforts made to alleviate financial stress, and to improve transportation challenges impeding access to healthcare services. Engaging schools was part of the broader array of measures adopted, as were efforts to provide health education and awareness to patients and their families.

7.2.1 Improving Continuity of Care Disruptions to continuity of care impacted just under half of this cohort. Despite the great number of such instances, only seven healthcare professionals specifically referenced the need to address ‘continuity of care’ as one of the solutions adopted, targeting chronic problems and unremitting difficulties with circumstances in obtaining follow-up care for children and their families. Even though few specifically mentioned the need to improve continuity of care, the majority of healthcare professionals took actions that led to such improvements. Several healthcare professionals indicated the need to specifically ensure ongoing care with an appropriate GP, especially the same GP, who would have a better understanding of the patient’s history and needs. This was seen as important in preventing unnecessary presentations to EDs, both from the perspective of an acuity of care requirement, where earlier treatment could have prevented deterioration, and from a convenience perspective, as EDs were sometimes perceived by carers as the ‘go to’ place for care. The need for GPs and other healthcare professionals to agree to special flexible arrangements to meet the limited and sometimes unanticipated attendance of some patients was also reported as a key issue in ensuring continuity of care. To deal with the complexity of problems for some patients and their families, it was essential to use a multidisciplinary team. Although time-consuming, pre-arranging co-ordinated appointments with various health professionals on the same day facilitated attendance and ensured optimal care, as many of these patients were travelling to appointments from afar. Additional arrangements included, for example, staff at a refuge clinic being contacted to assist a patient with ongoing social work support and a GP. Others required a youth Psychiatrist, Community Mental Health services and

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Eating Disorder Outreach Service to support the development of therapeutic relationships that contributed to effective ongoing care. It was well-recognised by these healthcare professionals that facilitating continuity of care through such services was integral to effective improvements in the health and wellbeing of their patients and the prevention of unnecessary adverse outcomes.

7.2.2 Offering Support to Patient and Family Providing support to children/young people, and their families was viewed as integral to addressing health inequities and encompassed emotional support, encouragement, counselling, checking on wellbeing, referring to support networks (e.g. drug and alcohol or domestic violence) and providing respite care. The need for support from professionals was amplified considerably in the complex and challenging circumstances of many children and their families who needed significant comfort or encouragement from their healthcare professionals. There were 14 CRs that mentioned specific instances of support provided either through counselling services and other services the patient and family were linked in with. More informal support was also provided by the healthcare professional attending to the patient and family often over time.

7.2.3 Linking to Services Patients often presented for a specific complaint but it was recognised by healthcare professionals that they required a broad range of other treatments or supports to receive optimal care. Extensive linkages to a very wide range of services were integral to solutions offered, as mentioned in 40 CRs with 67 references to referrals to more than one agency in most responses cited; in many cases an extensive network of referrals to multiple discrete services existed and, in some cases, multidisciplinary services were offered. For example, for one patient alone a total of 12 different services and healthcare professional groups was involved in the ongoing care of the patient. In most instances service provision involved face-to-face appointments. However, in three cases patients received consultations via Telehealth technology for expert advice. The categories of services to which children/young people were linked included the following: Physician/Specialist • Hospital care, including one stay in an intensive care unit and another tertiary hospital referral for surgical intervention; outpatient clinic appointments; hospital in the home visits.

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• Specialist care included multiple referrals to general paediatricians as well as paediatric sub-specialists in gastroenterology, nephrology, respiratory medicine, cardiology (for Rheumatic Heart Disease) and several referrals for otorhinolaryngology services. • GP referrals for follow-up were noted as implemented for at least 12 patients, one of whom required a formal mental health plan by the GP to facilitate a Medicare rebate for ongoing psychological support. • Healthcare professionals highlighted the need for engagement with multiple services so multidisciplinary care was arranged for several patients. In addition to physicians, these teams also included specialist nurses, continence clinic nurses, social workers, psychologists, drug and alcohol services, Aboriginal Liaison Officers, external services, such as ‘Partners in Recovery’, Aboriginal Women’s Health Centre, and Aboriginal Medical Services. Community Health and Support Services Community health and support services played an important role in delivering care to patients and their families. Such services included Family and Community Services, Maternal and Child Health Nursing, Early Childhood Centre services, specialist nursing services, a community midwife, counselling services, community volunteer organisations and community transport. Mental Health A large proportion of patients presented with mental health concerns (n = 22) of varying severity, as discussed in Chap. 4, but an additional five were identified as also suffering mental health issues despite presenting for a different complaint. Therefore, a subset of medical and community services involved mental health services which included assessment, treatment, and ongoing management. Referrals to psychiatrists and psychologists1 were extensive and supporting treatments also included family therapy sessions and support for ongoing coping strategies. The majority suffering mental health issues were adolescents and there were 18 cited referrals to adolescent mental health services and counsellors. Specific mention of drug and alcohol services was made for several patients and their families, including services for children born to parents with drug and alcohol abuse issues. Indigenous Health Linkages It was recognised that optimal care for Aboriginal and Torres Strait Islander patients had to include referrals to support services that could provide culturally appropriate care and assistance. Reported referrals included those to Aboriginal Liaison Officers, Aboriginal Women’s Centres, Aboriginal Medical Centres, the Rheumatic 1 Even though psychologists are Allied Health professionals, we have referred to them in this separate

section also involving psychiatrists given the large number of patients experiencing mental health problems.

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Heart Disease (RHD) register to ensure long-term follow-up (RHD almost exclusively affects Aboriginal and Torres Strait Islander children and young people [205]), Aboriginal Healthcare Specific Services in one jurisdiction and an Aboriginal Ambulatory Care Service which met patients during their hospitalisation and arranged follow-up care for them as outpatients. Specific instances of referral were cited in nine CRs and also included support in transitioning back into the community. However, it was also noted by some healthcare professionals that in some instances the availability of Aboriginal Liaison Officers was limited, which impacted negatively on the outcome for some patients. Allied Health Allied Health includes a broad range of health professionals other than doctors and nurses (see for example, Allied Health Professions Australia at https://ahpa.com.au/ allied-health-professions/). Referrals to a broad range of allied health professionals included referrals to dietitians for nutritional advice, feeding behaviour, and weight management; speech therapy referrals for two children; occupational therapy and audiology for three children (for whom ENT referrals were also arranged). There were several additional links relating to music therapy to assist the patient or the parent. For example, a music tutor was an important linkage for one child for whom there were significant mental health benefits anticipated. In addition, music therapy was initiated for a mother and her baby to promote mother-infant attachment. In addition to their inclusion in multidisciplinary team consultations, formal social work referrals were specifically reported for five patients. Social workers were engaged to provide general support as well as to assist in gaining financial support for the patients’ families, as the processes for government welfare schemes were not only too complex to navigate but also too difficult to apply for. Social workers also engaged in the organisation of respite care. It is rare for social workers to work outside the hospital system, so this work ultimately became part of the GPs’ role in the community setting adding to the time required for consultations. Other service links Interpreter services were reported for three families and in two cases it was noted that the absence of an interpreter created great difficulties in the parents/carer grasping the complexity of the health condition. In one case, the healthcare professional worked with the community to establish an alert system to identify vulnerable children and provide early intervention.

7.2.4 Involvement of Foster Care/Child Protection Services In Chap. 4, under the SDH Crime & Safety, we presented findings of instances of abusive and/or neglectful carer/parental behaviours towards almost half the patient cohort: abuse was suffered by seven children and adolescents, 16 children and adolescents suffered parental or carer neglect and five children and teenagers suffered both

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abuse and neglect from parents/carers. In addition, three female patients were noted as potentially having been sexually abused by others in the respite foster carer or family environment. In many cases, these children and young people had already had involvement with child protection services but some were referred to such services during the consultations with the healthcare professionals in this study. In cases where current abuse and/or neglect were identified, there were limited instances which did not warrant referral to child protection services and there was one case of alleged sexual abuse, which should have been referred given the child reported that a family member had sexually abused her; shockingly, based on the treatment regimen described as being adopted for the child’s health concern, this case did not appear to have been reported. Solutions were required to address specific child protection issues in thirteen cases: notification to state-based child protection services was undertaken in six instances; foster care or care by child protection services was arranged for four children; and kinship care arrangements were made for another three children: two with their grandparents and another with an aunt.

7.2.5 Alleviating Financial Stress Addressing the barrier of the cost of healthcare was a measure taken in 25 cases. However, in many cases more than one financial support option was identified and sought for the patient or family leading to a total of 45 supports reported as having been facilitated by the healthcare professionals involved. The organisation and sometimes negotiations to enact these supports reflected a very substantial investment in time on the part of the referring healthcare professional but were necessary, as access to such services was often pivotal in effecting much needed healthcare interventions. Despite healthcare professionals’ advocacy efforts and requests, these did not always result in a positive outcome; for example, one pathology company declined any financial support for an essential investigation. Financial supports related to bulk billing for consultations, support for the purchase of medication, arranging various allowances, travel to appointments and, in one instance, food vouchers. There were numerous cases where other healthcare professionals, whose services were also required, were prepared to bulk bill these healthcare professionals’ patients. For example, three specialists were prepared to bulk bill patients; six instances reported GPs who would bulk bill, with some specifically arranged for the child/young person precisely because they would offer such a service. Of note is the fact that some of the healthcare professionals reporting were themselves GPs and already supporting patients in this manner. Eleven psychologists also agreed to bulk bill patients and, in some cases, healthcare professionals provided services, including follow-up sessions, at no charge. Mental Health Plans are formalised referrals for psychologist services that provide Medicare funding for up to 10 consultations in one year. These were provided for five

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patients. Another patient was helped by a psychologist during an in-patient stay as more than ten sessions were needed to optimise his care, and this enabled treatment without added cost to the child. In another case, the patient was referred to a bulk billing Aboriginal Clinic. Social workers were central to providing assistance with contacting government agencies for a variety of supports, often at the request of the doctor seeing the patient. GPs also referred patients directly to these agencies. Such agencies included Centrelink (Services Australia), Services Australia for the Closing the Gap—PBS Co-payment Measure, the Department of Education, the National Disability Insurance Scheme (NDIS), Family and Community Services (FACS)(renamed to Department of Communities and Justice), the Department of Social Services, Housing, and other government agencies such as NSW Government for the Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS). Access to such agencies aimed to address a significant variety of needs including six specific referrals for financial support through Centrelink, carer’s allowance and support services; the Foster Child Health Care Card to support the cost of medications; adult guardianship and disability support pension and support services for a 17-year-old patient transitioning into adulthood; NDIS for access to physiotherapy, occupational therapy and equipment such as an iPad for school; food vouchers; Youth/Study Allowance and the Health Care Card; the provision of foster carers through FACS; the Special Child Care Benefit; and the Carer’s allowance. Two instances were reported of financial support being required to access medication. Lastly, a Refugee Aid agency arranged benefits for a family whose applications had been rejected by Centrelink.

7.2.6 Transport Transport support was provided on 13 occasions for 10 patients to enable access to healthcare and, in two situations, to support school attendance. Transport arrangements addressed challenges faced by those living in remote locations and those faced with difficulties accessing services. One case involved the organisation of charity ‘Angel Flights’ to enable appointment attendance in the city, to minimise the mother’s absence from her other children, and address a lack of funds for a reimbursable upfront payment through a government agency. Another two included the arrangement of transport and accommodation subsidies to facilitate a child reaching appointments. In one situation, an Aboriginal Liaison Officer even made special arrangements for a patient to be met by their own family members for further assurance. In addition, the coordination of appointments needed to be facilitated to ensure that available transport opportunities aligned with the availability of key healthcare professionals. Healthcare professionals went to great lengths to address very specific patient family transport needs other not-for-profit organisations also assisted, as was the case with a mother who was enabled to lease a vehicle which assisted in her child accessing important appointments with a metabolic specialist. However, there were

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also cases where broader solutions regarding transport emerged. For example, one case included seeking an improved transport hub for a region so that an adolescent girl could attend school and, in another case, successfully advocating for the reopening of a bus route to enable an adolescent to attend her preferred school where she felt safer. Furthermore, where community transport was available, it was utilised as support for grandparents as carers. Further examples of transport support involved two children who needed and received help to attend mental health appointments: one for an adolescent to attend a psychologist and another for an adolescent who required transport for urgent psychiatric evaluation.

7.2.7 Engaging Schools Healthcare professionals recognised the importance of education and school as a key focus for their patients’ current wellbeing and future development. There were 18 cases in which engagement with the school was part of the health solution offered to children or young people. In eight cases, there were multi-disciplinary teams working to help the child/young person and multi-disciplinary meetings were held to discuss school-based solutions. The teams included, for example, involvement of the principal, a psychologist, and social worker; community and school social workers and the school counsellor; the principal, parent, teacher, counsellor, and occupational therapist; or the young person’s case manager, school counsellor and social worker. In some cases, healthcare professionals advised the school of the patients’ health issues, which the school may not have been aware of previously. School principals were referenced in four cases as offering help and expressing willingness to be included in effecting change for particular patients and there were eight school counsellor referrals made for eight of the patients. In some cases, the healthcare professional engaged the patient’s teacher directly and in some CRs there was simply mention of ‘school’ involvement. Other professionals working with the school and, in some cases attached to the school, included social workers, psychologists, and special education teachers. The support arranged was wide-ranging and targeted to the learning needs or the specific circumstances creating difficulties in these children/young people’s lives. Changes to education plans for specific children were undertaken for five children/young people to cater for specific needs. One healthcare professional highlighted extended deadlines for assignments, a back-up plan to drop non-essential subjects if ongoing difficulty coping with the home environment was noted, and a plan to enable the young person to stay back in the library on alternate days to finish homework with transport support from a friend’s mother. This helped the young person stop skipping school and attend full-time to complete her education. Teaching support was listed for seven children. This included involving a teacher’s aide for three and a special education unit for one child. For others there was learning support and additional assistance provided. One teacher agreed for lessons and homework to be brought to the child in hospital. There was mention of school involvement

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in addressing other problems such as helping develop a positive self-identity and a goal-orientated future and addressing a mental health issue, exam rescheduling, and the possibility of changing schools for two children. Bullying was another issue addressed and, in one case, the referring doctor’s engagement with the school included giving a talk to the school on the impact of bullying on general and mental health as well as school performance. In two cases, females who had abandoned school were assisted by healthcare professionals to return to school and in two cases healthcare professionals facilitated changes to school transport. For some students, however, their mental health issues were so serious that schooling was no longer the focus while, in other cases, the focus remained on the health issue alone with no apparent link made to the patients’ school environment.

7.2.8 Educating Patients and Families Improving health education for patients and families was part of the solution outlined for 22 patients. This covered three main areas: general education on how to engage with healthcare system, medical education relating to a particular illness, and education on necessary lifestyle changes. In most cases, the education provided ranged over numerous areas. In four cases, the education provided was of a general nature: education regarding health care, when to seek treatment, and the need to persist with treatments; and building a trusting relationship with a teenage patient followed by education on the benefits of treatment and medications. In addition, two children and their families gained benefit from Nursing and Allied Health education, enhancing insights and helping one mother to feel empowered in her choices. Education about medical problems related to numerous conditions with the most common being asthma (n = 3) and mental health (n = 3). Asthma education included information on asthma triggers, red flags, management plans, and spacer techniques, while education on the mental health conditions was primarily about accepting the nature of the health problem, reducing concerns about stigma, and transforming perceptions about the most suitable treatments. Differences in cultural perceptions of mental health challenged healthcare professionals in two cases involving migrant families. In the third case, the mother was helped to gain insight into her daughter’s mental health and behavioural issues. The range of other specific medical issues was considerably varied and included: education on how to reduce the spread of a skin infection, education on feeding to promote the baby thriving, epilepsy, prophylaxis to prevent a recurrence of acute rheumatic fever, advice on the treatment required for ear infections in an effort to stave off hearing problems, advice about contraception, avoiding sexually transmitted infections and the risks of substance abuse during pregnancy. In one case education was not commenced at the time of treatment but the father indicated his willingness to receive education on the disease state and how to manage it.

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Healthy lifestyle changes that parents were urged to adopt included boiling drinking water in two instances (one of which was for formula feeds), advice to cease smoking in five instances, healthy eating and appropriate nutrition including decreasing sugary drinks and reliance on take away food, hygiene, healthy bowel habits and toilet training.

7.3 Working Towards Resolving Health Inequity Healthcare workers identified the importance of trying to resolve health inequity experienced by disadvantaged children in their care by adopting a multi-faceted approach to dealing with the health and social issues simultaneously. It was clear in all cases examined that they recognised the inter-relatedness of social issues and health, and of child health and family health, and they tackled these complex issues by playing various roles for their patients. They provided advocacy support, arranged linkages to the community and local services, coordination of care to ensure continuity, they provided or linked patients to culturally appropriate services, raised awareness of issues that required multi-disciplinary support, educated patients and their families and they tailored services to cater for patients’ and families’ specific needs. In most cases, these healthcare workers invested substantially more time and energy than would normally be expected because they recognised that there was a considerable gap between what these patients needed and what more advantaged patients normally require of their healthcare professional. Once they identified the health inequities through their consultation, these health professionals supported their patients by using their knowledge of the healthcare system to prevent adverse health outcomes. Even when they were not intimately familiar with the healthcare system, because they were at early stages of their career, healthcare professionals nevertheless made great efforts to navigate the system so as to assist their patients. In many of these cases, they went above and beyond their duty to advocate for disadvantaged patients who found it difficult to access relevant services in the healthcare system. Case 21: “This case highlights health inequity in a wealthy country and the importance of being an advocate for a disadvantaged child. It highlights the role that health services, including doctors, allied healthcare workers and community social workers play in minimizing the poor child health outcomes associated with low socioeconomic status.” Case 28: “In some cases equality can be met with the assistance of an advocate who can help not only navigate the system but also be able to discuss with someone the medical urgency of a situation. If there is a life threatening situation anyone can access an emergency department.”

In order to reduce the impact of health inequities, healthcare professionals supported patients/families by raising awareness of their patients’ specific needs, providing education, and empowering their patients or their families. Furthermore, in recognition of the difficulties families faced paying for services, healthcare professionals deployed a range of tactics: they provided bulk billing where possible and

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encouraged other health professionals involved in the treatment of the patient to do the same to ensure patients were able to access necessary care, and some of the reporting healthcare professionals provided additional services without any pay. Healthcare professionals identified the importance of continuity of care both for clinical purposes but also for the role it played in developing relationships with patients and they achieved this through a multidisciplinary team approach. The vast majority of these children experienced complex social situations, and communication between multidisciplinary teams was vital to ensure continuity of care and more favourable health outcomes. GPs played a key role in coordinating the communication stream between teams in many of these cases. However, a number of these healthcare professionals identified the need for and value of a funded multidisciplinary agency to promote coordination and communication between professionals and to provide insight into the home and school environment. Social workers also played an important role liaising between health professionals and community services thus enabling continuity of care. However, social workers are typically not employed outside the hospital setting, which lends further support for the benefits of a multidisciplinary agency to identify pathways for treatment. Case 15: “Having a continuity of care ensured that trust was developed in the permanent staff at the service, and follow up and appropriate medical treatment was sought.” Case 11: “I felt that a funded multidisciplinary agency able to manage the complexities of the home and school environment in addition to the physical and psychological issues may have been of benefit.”

The role of the community within which patients and their families lived appeared to be appreciated, as there was evidence that these healthcare workers understood the significance of community supports for the health and wellbeing of their patients and many made such referrals for their patients. This included, for example, engaging Aboriginal Health Workers to ensure patients continued to access mental health services within their community. They also recognised the negative impact on patients where such community services were not available. Case 10: “Some of these issues could have been aided with the use of an aboriginal health worker and follow up with a culturally appropriate Aboriginal Medical Service or other Aboriginal Community Controlled Health Organisations.”

Attending to cultural and language requirements was recognised as fundamental to reducing health inequities by healthcare professionals who encountered patients and families with diverse cultural and linguistic needs. These healthcare professionals acknowledged the important role that culturally appropriate healthcare workers play in ensuring patient agreement to continue treatments thus leading to better health outcomes. Part of the solution, according to some, also rested with healthcare professionals continuing to develop cultural competency skills, which facilitate appropriate treatment and ability enhance health and wellbeing outcomes. ‘Self education and reflection’ were cited as important factors in gaining an awareness of existing health inequities without which appropriate treatment cannot be provided.

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Case 15: “Ongoing self education and reflection is important for health professionals to develop to maintain cultural competency and address inequities when treating patients of differing cultures. In the rural indigenous setting, without implementing a broader change, many factors such as poverty, discrimination and lack of trust will continue to exist and continue to impact on the health of young people. While broader change is being enacted, awareness of these inequities will be important in appropriately managing these children.”

In cases where there were language barriers, healthcare professionals acknowledged the important role played by interpreters to convey sensitive information in a culturally appropriate manner to refugee families. Having access to such services assisted in resolving health inequities the children faced but there was at least one case where interpreter services were not used leading to less optimal care provision, which, for one professional, was a point of deep reflection and commitment to greater linguistic sensitivity in the future. Healthcare professionals in this cohort understood the intergenerational effects of SDH on their patients and, as a result of this understanding, they also referred parents for treatment where required, supported them, and advocated for them. They recognised that the inequitable distribution of power and resources that impact on everyday life often lay at the heart of their patients’ and their families’ health concerns. In an attempt to correct this and to help their patients and their families to improve their social circumstances and associated health outcomes, they vigorously engaged in helping them secure all the benefits these families were entitled to, but were unable to access on their own. These healthcare professionals were aware that health inequity can only be resolved through coordinated action across all government sectors. Case 58: “Improving living conditions, reducing overcrowding, access to safe water, good sanitation, efficient waste management systems and access to fresh healthy food are all determinants of health that can be addressed through good local governance.” Case 58: “Therefore, government social policy, not just health policy, is fundamentally important in achieving health equity.”

However, through their actions, they also demonstrated that they believed they can and should effect change as healthcare professionals. Some articulated the central role they can play in addressing health inequities they encounter in practice by appropriately adjusting the delivery of services to meet the needs of their patients. Case 20: “Overall, the case of X demonstrates the impact that external factors (e.g. social and economic) can have on health choices. While it may not be practical to simply breakdown these barriers, health professionals can play a vital role in minimising health inequity by optimising healthcare delivery through effective communication and tailoring practice where possible to accommodate the needs of individual families.” Case 31: “It is important that as healthcare providers we continue to try to facilitate health care to those who are most disadvantaged, through no fault of their own, in our society. This means using all windows of opportunity to optimise health outcomes and adapting the delivery of our service to make it more accessible to all members of society. Evidently in Australia there is still a long way to go to ‘close the gap’.”

Chapter 8

Outcomes: How These Children/Young People and Their Families Fared

8.1 Introduction The health professionals reporting on the treatments these children received and the social determinants of health they identified as exacerbating health inequity did not always indicate the medical and social outcomes that arose as a result of the treatment and care they provided for the specific patient and their family. The health professionals who did not report on the medical and social outcomes may have omitted this information either because they did not have further contact with the patient and could therefore not have access to such information or because they did not follow up. In this chapter we present an overview of the health and other outcomes that were reported. There were 48 cases in which health and other outcomes were explicitly mentioned by health professionals. The sub-themes identified in relation to health and other outcomes include: Ongoing Issues, Health issues Resolved/Improved, Related SocioEconomic Issues Resolved/Improved, Ongoing Contact with Health Care Providers, and Improved Family Outcomes. Two key messages were discerned from the themes analysed: the chronicity of effects, but also the resolution of both core clinical and associated social issues with good quality care. The cases were complex and multifactorial, and in many instances, it was difficult to neatly identify sub-themes in cases. Not all cases specifically articulated the outcomes for the patients but, in four instances, the outcomes could be derived indirectly from information provided on the solutions adopted by healthcare professionals.

8.2 Ongoing Issues In the 48 cases in which the health and other outcomes were explicitly mentioned, the vast majority of children/young people (n = 46) appeared to have ongoing health and/or socioeconomic issues which affected their overall health and wellbeing. There © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_8

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was a characteristic chronicity associated with the cases analysed involving patients with mental health concerns. In the 48 cases where outcomes were discussed, 18 related to mental health issues experienced by the child/young person. Thirteen of these 18 cases relating to children/young people suffering mental health issues were associated with chronicity of a broad spectrum of health issues, with only two cases appearing to have fully resolved following clinical contact. In three additional cases, it was unclear if the mental health issues were resolved. Similarly, it was difficult to assess if there were any children without any ongoing health issues because, in most cases, there were numerous health issues per child and in at least four additional cases (beyond the three children with mental health issues where it was unclear if these were resolved), it was unknown if the child had ongoing health issues. Of the 48 patients where outcomes were reported, three were lost to follow-up following initial contact with the health care system for varying reasons, including parental failure to bring the child in for appointments despite reminders; inability to cater for cultural needs as well as poor communication resulting in the child being discharged against medical advice; and one case where the child was discharged against medical advice and where child abuse was suspected. In one of the 48 cases, the baby died due to severe complications at birth, likely exacerbated by distance and delays in transfer. There were only seven patients for whom there appeared to be no ongoing health issues and only two of these patients appeared to have no other ongoing issues that might affect their health and wellbeing.

8.3 Health Issues Resolved or Improved Despite the chronicity of the paediatric clinical conditions in question, the general clinical trajectory was one of improvement. Indeed, 37 of the 48 cases in question reported some direct improvement in relation to the clinical condition in question. For example, 13 of the 18 cases where patients suffered mental health issues reported improvement, including cases where the patient was able to stop abusing substances, and another who was able to cease pharmacological intervention. Of the seven cases where it was reported or evident from the surrounding health information that there was no improvement or resolution, there was a broad mix of clinical scenarios. For example, one case involved a child with gastrointestinal disturbance, where the child had ongoing difficulty with soiling. Another involved a child suffering chronic arthritis known to have a relapsing and remitting course. Three of the cases were mental health related, one related to a child with respiratory issues but whose mother did not bring him to appointments and one related to a child with a diagnosis of alcohol withdrawal syndrome but who did not attend follow-up appointments. For four of the 48 patients there was no information on the resolution or improvement of the health issue even though outcomes in other areas of the patients’ lives were reported on.

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8.4 Ongoing Contact with Healthcare Providers Of the 48 total cases where outcomes were mentioned, 37 patients had ongoing contact with healthcare providers, four had no further contact, and for seven patients there were no details regarding their ongoing contact. This analysis brought to the fore the fact that through child contact with health services, parental health issues often became evident and received attention; for example, three mothers were referred to mental health services for continued treatment. Of the 37 cases with ongoing contact, the majority continued to have contact in expected ways, i.e. with paediatricians, GPs, or psychologists. At least 15 of the 37 followed up with more than one health care provider and, in some cases, with multi-disciplinary teams. These cases were spread across the spectrum of chronic disease (for example, rheumatology, renal, metabolic, gastrointestinal) and chronic social/mental health with some children/young people requiring services for both chronic disease and mental health.

8.5 Related Socio-Economic Issues Resolved or Improved Schooling emerged as the main area of the child’s life to be positively affected, with 13 cases recording improvement as a result of contact with and support from the school system initiated by healthcare professionals. For example, some children were able to avail school-associated supports to augment out-of-school psychological support systems (n = 2). One child was able, with the assistance of the school, to demonstrate remarkable resilience in the face of severe mental illness and isolation from medical support by virtue of the rural location. Another patient was suffering from a combination of an acquired brain injury and a mental illness yet the school was recorded as a positive influence in this child’s life. Three cases related to 17-year-old girls with mental health issues (two of whom were Aboriginal) who were supported to return to school and complete their schooling after two had abandoned school altogether and the third was attending intermittently. Two of these girls expressed aspirations to achieve professional goals. Support from schools also addressed issues with bullying, which significantly improved these children’s anxiety levels and social functioning. Support from the school was often one of many supports offered to the child or family. In some cases, healthcare professionals did not make reference to improvements in relation to socioeconomic aspects of the child or family’s life but this could be assumed based on the numerous support services activated for some children and their families. In a number of cases, the child’s socioeconomic status improved through changes to their living arrangements. For example, although not ideal perhaps, one baby was not immediately released into his mother’s care due to concerns about the child’s safety. Simultaneously, however, the mother was accessing psychiatric and psychological supports and there were plans to re-unite mother and

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child. In 10 of the 48 cases examined, it was unknown if there were any improvements or resolution to socio-economic factors that might impact of the child/young person’s health and wellbeing.

8.6 Improved Family Outcome It was difficult to establish in some of the cases whether there had been an improvement in family outcomes. Of the 48 cases examined, eight indicated definitively that there had not been an improvement in family outcomes as a result of contact with healthcare providers. The reasons for a lack of improvement were multi-factorial; for example, families were affected by the patients’ substance abuse, and involvement in the criminal justice system for one of these patients also mitigated against a positive outcome for the family. Improved family outcomes were also reduced due to subsequent breakdown of the parental relationship for two children, while in another case, despite the death of her baby, there was some improvement for the adolescent mother herself, as she was receiving substantial supports and was granted support from a foster family. In three cases, healthcare professionals were unable to follow up as appointments were missed or the child was lost to follow-up so a lack of improvement to family outcomes could perhaps be assumed. Of those cases which did report a positive family outcome or where a positive outcome could be safely assumed due to the multi-focal supports provided (n = 25), it was again difficult to ascertain definitively whether the benefit derived from the clinical contact in question, or whether the family was on a pre-existing trajectory of improvement. It was clear in some cases that contact with the healthcare system had changed the course of the family for the better with, for example, improved attendance at medical appointments and school. One case involving an AVO did result in the family domestic violence experienced by the children reducing but the absence of the father coupled with the mother’s mental health issues, resulted in the child not being seen to by specialists for a serious health condition. In another case, it was reported that the family received support to address the child’s mental health issue but the sexual abuse reported did not appear to have been addressed even though the alleged perpetrator lived with the family. There were additionally seven cases where the impact on the family was unknown and eight more where the impact was not stated but assumed to be positive due to the large number and variety of support services provided. In a number of these eight cases, contact with child protection services appeared to have resulted in improved outcomes because children were removed from immediate risk of harm or because they were provided with a caring and safe family environment, as reported by some of the patients themselves. Finally, in two cases where foster care may potentially have improved the family environment, the handover procedures were so lacking that important health information was not disclosed and appointments were not kept leading to detrimental health impacts for the patients.

Chapter 9

Discussion of Challenges, Solutions, and Outcomes

9.1 Introduction Chapters 6–8 presented the findings of analyses undertaken in relation to the challenges faced by healthcare professionals attempting to treat their patients and provide broader solutions for their families; the comprehensive solutions identified and adopted to improve the patients’ health concerns and address broader social issues; and the outcomes for these patients and their families as a result of their interaction with healthcare services. This chapter draws on these findings in an attempt to both disentangle the complex health and social issues identified but also to draw together the threads that point to ways of addressing some of the health inequities identified with reference to current research, the literature, and policies. This chapter (as is the case with many other chapters) could have been a book in itself. We have regretfully not addressed all facets, such as, for example, the role of politics in the inability to resolve glaring health inequity issues. Such omissions are also due to pragmatic publishing constraints.

9.2 Complexity of the Australian Healthcare System Australia’s healthcare is regarded as one of the best in the world [1]. The Australian healthcare system is complex, as it is run by all levels of government including federal, state, territory and local governments. Each level of government has separate responsibilities and for some areas of healthcare, such as palliative care and mental health reform, there are shared responsibilities under national agreements [2]. The Australian health system is divided into public and private services. The public service is free or low-cost for all Australians, under the federally funded ‘Medicare’ health care scheme, the foundation of our health system since 1984. In addition, all Australians (theoretically) have access to private health insurance through various

© The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_9

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private insurers. This includes cover for hospital and general treatments not covered by Medicare (e.g. dental treatments, physiotherapy, optical services) [2]. Since the 1980s, there have been at least 16 national reviews or reports on aspects of the Australian healthcare system but none have examined healthcare provision, its performance, or effectiveness as a whole-of-nation and whole-of-system structure despite the availability of frameworks such as the WHO Health Systems Performance Assessment Framework (WHO Framework) [3]. The WHO Framework was conceptualised to assist with assessments of the performance of constituent parts of the healthcare system and the outcomes achieved so as to guide the formulation of evidence-based health policies for health systems [3]. Calder and colleagues adapted the WHO Framework to better reflect the workings of the Australian healthcare system and included as system building blocks: health system stewardship, health system financing, quality & safety, and health services design/delivery, all of which are enabled by the health workforce, medical products & technologies, and information and research. Together, this two-tiered set of system building blocks aim to achieve system goals that include: responsiveness of the healthcare system, improved health, financial risk protection, and reduced health inequities [3]. This adapted framework is appropriate but applying it to the current intricate network will take political courage, commitment to long-term benefits, and very strong determination to make the great structural changes required. All 16 national reviews and reports considered in the review by Calder and colleagues acknowledged the structural complexity of the Australian healthcare system and identified it as impeding its reformation [3]. The complexity of the system was also recognised on the ground by healthcare professionals in this study, as they attempted to navigate it to assist their patients in receiving the healthcare they required. This complexity led to them using vast amounts of time to achieve appropriate linkages with the various healthcare professionals and services needed. Similar complexities in the healthcare system have also been identified by healthcare professionals in Canada, where, for some, time limitations and a lack of clear health inequity reporting pathways created barriers for them to provide additional assistance [4]. In our study, even though healthcare professionals were much better equipped to navigate the system than their patients’ parents, they too viewed the system as a significant challenge due to its structural complexity. It was this realisation and the inordinate amount of time expended attempting to find treatment and social support pathways for their patients and their families that led some to suggest the establishment of and funding for a multidisciplinary agency to identify pathways for treatment (and social supports).

9.3 The Cost of Healthcare Compared to other OECD nations, Australia offers very good healthcare coverage [5] with its universal health insurance scheme, Medicare. Despite this, Australia is identified as one of few OECD countries with comparatively low public health coverage

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for hospital treatments (69%) and high private health insurance contributions for such services (26%) [6]. This combination is particularly punishing for individuals who are disadvantaged, as they are not as likely to have private health insurance. The challenge of meeting costs for essential urgent surgery was witnessed in our study and it required considerable effort for the healthcare professional to identify work-around methods to facilitate the necessary medical intervention, which would otherwise have been attended to at a much later stage, potentially (if not certainly) compromising the health outcomes for the patient. Beyond the healthcare impact, it is important to note the shame that the parent experienced at not being able to meet her child’s medical needs, an aspect receiving little focus but which has important psycho-social implications for that parent, the family, and oftentimes whole communities. Inefficiencies in the healthcare system have been recognised as leading to increased healthcare costs for patients therefore jeopardizing the ability to achieve optimal health outcomes [3]. In this study we noted that numerous patients and their families were helped to access a range of concession cards, such as the Health Care Card. Access to such concession cards is critical for families who cannot afford healthcare costs but not all low-income earners are entitled to them [7]. Policy changes such as those introduced in Australia in 2005, intended to reduce out-ofpocket expenses for GP consultations, may have inadvertently disadvantaged those low-income Australians who are not entitled to concession cards; as a result of the incentive given to GPs to bulk-bill concession card holders in order to reduce their out-of-pocket contributions, low-income earners not eligible for concession cards saw their out-of-pocket contributions increase [7]. Further challenging lowincome earners is the fact that doctors’ fees are not regulated, thus leading to a steady increase in non-bulk-billed specialist co-payments over the years (with the average co-payment per visit increasing from $30.18 in 2006 to $75.22 in 2016) [7]. We saw in this study the extraordinary financial challenges faced by patients’ families and the lengths to which healthcare professionals went to achieve the best healthcare provision for their patients, sometimes forcing them to advocate vigorously for bulk-billing with specialists, GPs, and other health services essential for their patients, and even foregoing payment themselves. Similar access barriers are noted for disadvantaged communities in Canada, which also offers universal healthcare [4]. It was also identified in our research that some parents did not seek timely medical attention for their children, which in many cases was linked to reduced health literacy, lack of understanding, and lack of parental involvement,1 according to the healthcare professionals treating the patients. However, in addition to other issues, such as the complexities involved due to remote living, delays in accessing healthcare services have also been linked to financial barriers experienced by patients (and in this study by their families) [5]. 1 We remind readers that ‘lack of parental involvement’ in this work relates to physical or emotional

distance from the child/young person’s life so that the child/young person is unable to rely on support of whatever form needed from his/her parents. As we have previously stated, ‘lack of parental involvement’ does not cast blame on parents but rather aims to simply identify supports a child did not have access to.

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9.4 Patient Advocacy and Linking Patients to Services Despite the complexity of the exercise due to the intricate web of medical and social needs, linkages to services were keenly pursued by the healthcare professionals in our study to ensure ongoing care, without duplication, for both acute and chronic conditions. These linkages generally assisted patients in this study to benefit in relation to key health concerns, to cope with or ameliorate difficult circumstances, and potentially to avoid more serious outcomes. In addition to other healthcare services, these healthcare professionals made efforts to link their patients to local GPs and community health services in recognition of the role these play in improving continuity of care and health outcomes. Despite, however, primary and community health services being viewed as central to high quality affordable healthcare provision in Australia [8], unlike the hospital sector, there is a dearth of monitoring data to determine the quality and effectiveness of primary healthcare delivery, also particularly important for determining the level of co-ordination between services which impacts on continuity of care [9]. Without reliable data for this key component of the healthcare system, it is challenging to develop evidence-based policies to improve quality, efficiencies, and outcomes. Also challenging efficient development of primary and community health services appears to be the uneven distribution of funding which continues to preference the hospital sector, according to three Australian national reviews in 2009 (National Health and Hospital Reform Commission), 2013 (National Commission of Audit), and 2017 (Productivity Commission) [3]. Further to the challenges of meeting healthcare costs discussed above, the patients and their families in our study had even more immediate financial needs to cover the cost of everyday living. Without the intervention of these healthcare professionals to assist with accessing such supports, patients and their families would have had no chance at all of receiving the care urgently needed to address the child and families’ health and social needs. Older adolescent patients attending to their own health matters and the parents of younger patients found the healthcare system too complex to navigate but they were also ill placed to access other urgently needed supports to which they were entitled. It should not be health professionals’ responsibility to fill out forms and spend time advocating for their patients given the heavy workload resulting from ever-increasing demands on the healthcare system. While such time spent on these tasks brings about good outcomes for their patients, it also deprives others of their clinical expertise and is not a cost-effective use of resources. To address this issue, an agency linked into the healthcare systems could alleviate much of this pressure and could provide more targeted support given that such a service would be staffed by employees who are intimately familiar with all the health and social services and how they intersect.

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9.5 The Role of Healthcare Professionals in Addressing Health Inequity Australian healthcare ranks very high overall compared to Canada, France, Germany, The Netherlands, New Zealand, Norway, Sweden, Switzerland, the UK and the US, with health outcomes, administrative efficiency, and care process being its strongest areas [10]. However, when compared against the same countries, it ranks low in terms of health equity, coming in seventh among these 11 countries [10]. This is partly due to poor healthcare access in rural and remote communities [11], an issue also identified in this research as a barrier to timely access and appropriate frequency of access for many patients. The healthcare professionals in this study recognised that SDH underlie health inequity, with their understanding of health inequity evidently partly informed by the nature of the course they were undertaking. Most healthcare professionals, even if not taught about social justice and SDH as part of their training, become aware of equity issues when they practice and may also have insight as a result of having experienced some inequities themselves [4, 12]. There is now increasing support for health professionals to identify and address SDH in clinical practice [13] as well as a greater focus on educating health professionals about SDH [14]. Health inequity is also highlighted in numerous professional documents. For example, the Good Medical Practice: A Code of Conduct for Doctors in Australia recognises that doctors have an advocacy role as a result of the health disparities acknowledged as existing for Aboriginal and Torres Strait Islander peoples [15]. Similarly, GPs who apply for the FRACGP fellowship, enabling them gain a specialist general practice qualification, are also urged to take on an advocacy role and to improve equity and access of care for their patients as part of the competency profile as a Fellow [16]. Another example includes reference to Occupational Therapists needing to ‘addresses issues of occupational justice in practice’ as part of their competency standards [17]. There are two concerns about such references to health inequity and healthcare professionals’ duties: first, mere reference to health inequity in standards and codes does not provide the deep understanding required to address the complex social issues patients face, which impact directly and persistently on their health. If health inequity is to be taken seriously, it needs to be reflected in the education healthcare professionals receive (e.g. HealthBegins educational and training programs in the US [18]), in the time they are afforded while treating such patients, and in the supports and services available to treat disadvantaged patients appropriately so that they do not constantly present for the same health complaint in moments of crisis. Second, it is appropriate that health professionals should be called upon to take a position of leadership in tackling health inequity [4, 19, 20] given their powerful sphere of influence in all societies. However, expecting health professionals alone [21] to correct long-standing failings in social and health systems that pronounce health inequities rather than decrease these is ineffective and unduly burdensome on health professionals. Health professionals should always have a role in advocating for those

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patients less advantaged, if not for any other reason, because they are often the first to clearly identify those patients whose circumstances deprive them of equal opportunities in all speres of life, including health. However, they cannot shoulder this responsibility alone. Tackling health inequity requires a system-wide approach available across all social and health services and not just the healthcare system [22, 23]. As pointed out by healthcare professionals in this study, and supported by the authors, dedicated services that specialise in connecting patients and their families to all services that play a role in supporting patients could assist in reducing the social and health inequities that many continue to face and could ultimately result in fewer instances where limited public health funds are wasted because the root causes of poor health would be identified and have a chance of being addressed. While the Royal Australasian College of Physicians unambiguously and forcefully recommends action that paediatricians and other health professionals are expected to take to reduce child health inequity, it also recognises that governments have significant responsibilities [20]. For example, the first recommendation made in the 2018 Royal Australasian College of Physicians’ Statement to increase accountability for improving child health equity is a practical and focused way to definitively raise awareness and produce tangible outcomes around health inequity: Making directors-general/secretaries and chief executives of all relevant Government departments accountable for the achievement of equity-based key performance indicators that promote the health, development and well-being of all children. [20, p. 5].

More recently in Australia, there has been consideration of the benefits of a national approach to ‘social prescribing’, i.e. “…integrating the clinical aspects of primary care with the broad range of social, economic and environmental factors that affect the health and wellbeing of individuals who have specific health and social care needs.” (p. 1) [24]. Some of the beneficiaries of social prescribing are cited as being children in their first 1000 days, people with mental health issues and/or chronic disease, and people experiencing social isolation, with family and carers also acknowledged as benefiting [24]. This approach holds promise but must be considered as one of many approaches to reducing health inequity. Other healthcare system changes around the world also warrant attention particularly because they have demonstrated significant benefits to patients and employees alike. For example, the so named ‘Nuka Approach’ in Alaska has focused on integrating specialty services with primary care with enviable results: “40% drop in ER visits, 36% drop in hospital admissions, 97% customer-owner satisfaction, 95% employee satisfaction” in the space of seven years (2000–2017) [25].

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9.6 The Benefits of Addressing Health Inequity and the Cost of Inaction The benefits of addressing health inequity are multifarious and range from benefits to health, life itself, society, and the economy. Addressing the health, wellbeing, and social needs of children/young people at earlier stages in their lives ultimately yields enormous economic and social benefits in relation to health spending, educational outcomes, reduction in crime and incarceration rates, increase in productivity and tax revenue, and reduction in social benefit payments in addition, of course, to the enormous health benefits which accrue [26]. Focusing on economic benefits, Roos et al. estimated that by reducing socioeconomic differences in health in Canada, 15% of total hospital expenditures could have been saved [27]. Similar more recent findings reveal the economic impact of health inequities on the Israeli economy, with the total cost estimated at 0.7–1.6% of Israel’s GDP [28]. In a 2012 report on the Australian context [29], it was calculated that $8 billion dollars annually would be generated from thousands more contributing to the workforce and that over $6.7 billion would be saved annually in hospital expenditure, reduced Medicare services, and reduced access to the Pharmaceutical Benefit Scheme if action on the SDH were taken in accordance with the 2008 Closing the Gap in a Generation report [22]. Furthermore, there is reliable evidence from an array of reputable sources that investment in SDH such as housing, transport, and neighbourhood environments yields economic benefits and, as one might expect, enormous health and social benefits as well [30]. On an international level, attempts have been made to identify countries which display high and low levels of health inequity and there is, once again, acknowledgement that health inequity is reduced as more attention is paid to education, employment, housing, and social policies that aim to introduce greater fairness and balance [6] as well as other SDH [22, 31]. While most of the world is focused on reducing health inequities, there is at least one striking example of a country losing significant ground despite the considerable expertise available, the wealth of the nation, and the advanced health system; England has sadly reversed within a decade enormous gains made over many decades. In 2010, the Marmot Review [32], amongst other detailed information on the rationale for reducing health inequities in England, outlined the losses in revenue per annum resulting from health inequities: £31–33 billion per annum in productivity losses, £20–32 billion per annum in lost taxes and increased welfare payment and costs to the health system due to inequity in excess of £5.5 billion per annum. Despite the evident health, social, and economic benefits, the follow-up 2020 Report reveals England’s devastatingly poorer status in all areas of health and social conditions; for example, there have been limited improvements in life expectancy, people experience poorer health, there is an increase in child poverty, homelessness, food insecurity, educational decline and insecure employment [26]. These devastating consequences for individuals and the country itself have been attributed to economic austerity measures taken by successive governments [26].

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One need only look at the calamitous consequences wrought by the COVID19 pandemic (loss of life, disproportionately experienced by the disadvantaged in affluent and low to middle-income nations alike, the impact on economies worldwide, and the social and health impacts of a life without human contact) to see that a fundamental cognitive, social, political, and economic reset is urgently required. In the context of this pandemic, the extensive and deeply rooted health inequities within and across nations [33, 34] have plunged the world into an even deeper existential and economic crisis; attending to the urgent issues that health inequities have exposed has cost governments around the world trillions of dollars, which will impact on economies for years to come. Amidst the deeply felt despair, however, the pandemic has offered the world a unique, once-in a century it seems, opportunity to re-imagine our social and health structures to achieve what is now loudly being demanded world-wide: racial, social, and health equity. This is the world’s opportunity to redress the imbalances and the structural injustice that has deprived thousands of children from accessing the same opportunities in life as those who are not disadvantaged. There are many nationally and internationally significant contributions, in a variety of levels of abstraction and specificity, that clarify what action needs to be taken to reduce health inequities [20, 22, 31, 35–37]. We close this chapter with the expert advice given in The Marmot Review in 2010 [32] because the simplicity with which profound statements of fact were expressed is eloquent and impactful. Box 9.1: Reducing health inequity 1. Reducing health inequities is a matter of fairness and social justice. 2. There is a social gradient in health—the lower a person’s social position, the worse his or her health. Action should focus on reducing the gradient in health. 3. Health inequities result from social inequalities. Action on health inequities requires action across all the social determinants of health. 4. Focusing solely on the most disadvantaged will not reduce health inequities sufficiently. To reduce the steepness of the social gradient in health, actions must be universal, but with a scale and intensity that is proportionate to the level of disadvantage. We call this proportionate universalism. 5. Action taken to reduce health inequities will benefit society in many ways. It will have economic benefits in reducing losses from illness associated with health inequalities. These currently account for productivity losses, reduced tax revenue, higher welfare payments and increased treatment costs. 6. Economic growth is not the most important measure of our country’s success. The fair distribution of health, well-being and sustainability are important social goals. Tackling social inequity in health and tackling climate change must go together.

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7.

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Reducing health inequity will require action on six policy objectives: • Give every child the best start in life • Enable all children young people and adults to maximise their capabilities and have control over their lives • Create fair employment and good work for all • Ensure healthy standard of living for all • Create and develop healthy and sustainable places and communities • Strengthen the role and impact of ill health prevention.

8.

Delivering these policy objectives will require action by central and local government, the healthcare system, the third and private sectors and community groups. National policies will not work without effective local delivery systems focused on health equity in all policies. 9. Effective local delivery requires effective participatory decision-making at local level. This can only happen by empowering individuals and local communities. Adapted from: Fair Society, Healthy Lives: The Marmot Review. Deep appreciation of the interconnectedness of other policy areas and health outcomes is evident in the Marmot Review [32] and is recognised around the world in the ‘Health in all policies’ (HiAP) approach [23] as well as by peak bodies, such as the Australian Medical Association [38]. If ever there was a time for an urgent paradigm shift in our approach to health and healthcare, it is now, as the COVID-19 pandemic has shown so devastatingly [39]. Part of this shift must also necessarily include a true and sustained commitment to implementing policies and recognising the need for local communities to be engaged in meaningful ways that lead to improved health outcomes [40]. We are well beyond the point where simply recognising the issues and committing to change in words alone is appropriate. This is particularly so in relation to First Nations Peoples where the need for significant change is amply demonstrated in this research by the over-representation of children of Aboriginal and Torres Strait Islander descent in the cohort.

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Chapter 10

Conclusions

The detailed qualitative analyses undertaken in this long-term research project aimed to identify the SDH that clinicians recognised as impacting on the health and wellbeing of the paediatric patients they treated, as described in 1000-word essays assigned for educational purposes, which formed the data for this research. Analysis of the SDH drew on the framework of social determinants of health articulated in the Communities in Action: Pathways to Health Equity [1] which was modified to accommodate findings specific to our data and to provide a more nuanced frame. This analysis resulted in both the mapping of all the SDH identified in the cohort along with sub-themes related to these SDH but also all the SDH that each paediatric patient was impacted by. These rich findings are represented in tabular form in Chap. 3 to enable the reader to get a sense of the whole, which is analysed in detail in Chap. 4 and discussed at length in Chap. 5. The analysis of the SDH has revealed nothing that is incompatible with extensive research undertaken over many decades throughout the world by academics, international agencies, and intergovernmental organizations such as the United Nations. What it did reveal, however, in shocking detail, was the extraordinary depth, breadth, and range of SDH that impacted on individual children/young people and their families, and by extension on their communities. It revealed that in a sample selected randomly from a large number of submitted essays, one third of the cases related to Aboriginal and Torres Strait Islander children, a reflection of the disproportionate impact SDH have on these children and young people in Australia. The findings revealed very significant levels of violence in these children/young people’s lives both directed at the children/young people or indirectly experienced as a result of violence involving their parents; great poverty was experienced by the majority, with unemployment also a feature in many of these families’ lives. There were many single-parent families with primarily mothers shouldering all the child rearing responsibilities, and characteristic of this cohort, were high levels of mental illness in both the children/young people and their parents, often exacerbated by substance abuse, a feature in over one third of carers and also some young people. Educational problems featured in just over a third of these children/young people’s © The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd. 2021 V. Xafis et al., Health Inequity Experienced by Australian Paediatric Patients, https://doi.org/10.1007/978-981-16-3338-6_10

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lives and their parents/carers also suffered the effects of low educational attainment and low health literacy, which impacted on the patients. There were multiple difficulties arising in relation to health systems and services with disruptions to continuity of care, lack of services, and sub-optimal care featuring most prominently. Almost a third could not access the government and other supports they required, which placed the patients at great disadvantage. An unexpected finding related to the high level of parental non-involvement in these children/young people’s lives, which leaves the child or young person emotionally exposed to risks, and lacking warmth and a sense of security in their lives. Close examination of the analysis, however, revealed that parental/carer non-involvement related to inter-generational disadvantage. Characteristic of these children/young people, and particularly parents/care givers, was the lack of support networks available to them. When we remember that these findings relate to real children/young people, the facts are difficult to absorb and challenging to accept. No children/young people should face such hardship and circumstances from which it may be difficult to emerge intact. It is even more shocking to know that these children/young people are living and being raised in a very affluent country which wants for nothing, except for an urgently needed philosophical re-alignment of thought and practice in our social and health structures. The research also aimed to identify the solutions that healthcare professionals deployed to reduce the impact of these SDH. In identifying the solutions, we also identified the challenges health professionals and families faced. The most prominent of challenges for health professionals related to the time required to navigate the complex healthcare maze as well as that of the support services, such as Centrelink, while at the same time advocating for their patients and experiencing the pressures of large patient numbers. The same challenge relating to the complexities of the health care system also confounded adolescent patients and families. Families also suffered the effects of low health literacy which led to not understanding if and when to seek treatment and the importance of ongoing treatment. The solutions health professionals deployed were substantial and often multidisciplinary in nature while also tied to community services. The health concerns which brought parents, carers and older patients to the health professionals were the tip of the social determinant iceberg. Health professionals discovered that most patients needed urgent assistance both with other medical issues and in a variety of areas impacting negatively on the patients’ and families’ lives. Such was the complexity of arrangements essential for many patients that it appeared to leave health professionals in a desperate spiral of excessive work with inadequate supports. The development of a central service that is expert in identifying the supports and services each patient requires in practical terms (with input from healthcare professionals) would require significant resourcing, planning, and co-ordination but would result in better care for the patients and certainly a more manageable and productive work experience for health professionals, which, in turn, would ultimately translate into better care for other patients. Chapter 9 discussed at length the complexities of the Australian healthcare system and there we also discussed the benefits arising from eradicating or reducing the health inequity experienced by a significant proportion of children/young people in

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Australia and around the world. We have mentioned some of the actions that can help reduce health inequity and structural injustice in Chap. 9. The main aim of this work, however, was not to identify solutions to health inequity because these have been identified over many years, as indicated in the previous sections. The aim of this work was to investigate how health inequity actually plays out in children and young people’s lives. What we witnessed was disheartening and shocking but health professionals’ efforts inspired us with some hope. Now governments need to take on the work we elect them to do as leaders of the whole of our nation irrespective of the complexity of the task and without the short-sightedness imposed by election cycles. We should no longer waste limited and precious public funds on expensive policy development which is not implemented and expensive public enquiries and royal commissions whose recommendations are not fully adopted. The year 2020 pointedly focused global attention on the significant impact health inequity has on the health and wellbeing of entire nations as well as on the economies of all countries. We have seen vast resources distributed to the most disadvantaged groups and we have witnessed the shocking disproportionate impact COVID-19 has had on groups and populations who have suffered health inequities throughout their lives around the globe. We have also witnessed the global uproar regarding structural injustice, racial discrimination, and long-standing unfair treatment of certain segments of the population. We are faced with a unique and historically singular opportunity to reflect, to acknowledge, and to re-imagine complex systems which have contributed, for countless decades, to structural injustice that has led to health inequity. To miss this opportunity and ignore the message the pandemic is sending politicians around the world would be irresponsible and dangerous, particularly because we are faced with other enormous challenges ahead, such as climate change, whose impact on health has not been discussed in this work. We would like to close with an acknowledgment of the confronting nature of the questions in the Pause and think boxes. Despite this acknowledgment, we put forth a challenge to all readers, particularly those in positions of power who can effect change: are you prepared to imagine a child or young person you love when reading these questions? Are you prepared to commit to addressing at least some of these questions rather than leaving them to others as so many have done?

10.1 Limitations of the Study It is important to note that the SDH identified as impacting on these children/young people’s health are based on reports from healthcare professionals and cannot, therefore, be assumed to be complete, especially given they were reporting on these cases within a specific word count for educational purposes. For example, it was often evident and easily gleaned from the data that a child/young person was impacted by a certain SDH even if not explicitly mentioned by the healthcare professional but such instances could not be included in the count of cases affected by that SDH.

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This research was not funded and the completion of the project was therefore protracted as a result of significantly changed circumstances in all research team members’ lives. Despite this, the team engaged in finalising the research outside of work hours over a longer period, a positive aspect of which was that the protracted period enabled us to become even more familiar with the extraordinarily rich data relating to these children/young people and their families, whom we wish well with all our hearts.

Reference 1. National Academies of Sciences Engineering and Medicine, Communities in Action: Pathways to Health Equity, ed. J.N. Weinstein, et al. 2017, Washington, DC: The National Academies Press. 582.