Ageing with HIV: a Qualitative Longitudinal Study of the Lived Experience of Older Homosexual Men in Regional Queensland

Ageing with HIV: A Qualitative Longitudinal Study of the Lived Experience of Older Homosexual Men in Regional Queensland

Bernard James Gardiner

Diploma of Teaching (Early Childhood and Primary), Graduate Diploma in Movement and Dance, Graduate Diploma of Education (Health Education), Master of Health Promotion

A thesis submitted for the degree of Doctor of Philosophy at

The University of Queensland in 2020

Faculty of Medicine

Abstract

Background

People living with HIV (PLHIV) who survived the early AIDS-crisis in Australia are now middle-aged or older and most are gay men. This first generation of PLHIV have lived through constant change and uncertainty, including the hollowing out of their generation as many of their peers died before the advent of effective treatment. They are the first generation of positive people to age, and are often dealing with complex physical and psychosocial health issues. The ageing of PLHIV poses serious implications for the planning, design and implementation of services that must address their complex needs. It is well recognised the aged care sector, health and psychosocial services, lesbian, gay, bisexual, transgender and intersex (LGBTI) communities and PLHIV are poorly prepared for the ‘greying’ and ageing of the epidemic. The lived experience of older PLHIV provides a critical opportunity to gain knowledge and understanding of ageing with HIV.

Purpose

There is a significant gap in research investigating the emerging challenge of ageing with HIV, particularly in regional areas of Queensland, Australia that have seen a significant migration of PLHIV. This thesis explores the experiences of ageing among gay and other men who have sex with men (MSM) PLHIV in regional Queensland. The thesis aims to understand the complexities and intersections of experiences of HIV, ageing and other social determinants of health in regional Queensland, and give voice to the gay men and other MSM who are ageing with HIV in regional Queensland. It examines their experiences through shifting policy and service contexts including biomedicalisation of the response to HIV. This research seeks to inform changes to policy and models of care and support, informed by the voices of PLHIV.

Methods

This qualitative longitudinal research was undertaken within the Living Positive in Queensland Study. The 32 participants identified as gay men, or had experience of sex with other men, and interviews were conducted at two time points between 2013 and 2016. At first interview all were living in regional or rural Queensland. An inductive approach informed by Grounded Theory was used to explore their lives across time and produce a thematic analysis. Physical health and psychosocial experiences of ageing were

2 examined from a life course perspective. Historical events, especially the changing legal and social status of gay men, and the response to HIV, were detailed to provide context that shaped their lives.

Findings

The lived experiences of these members of the first generation to age with HIV bought into sharp focus the social suffering that activism and clinical management of HIV has not solved, particularly in regional areas. Survivors had experienced sudden and life- threatening declines in physical health in the past, leaving them with heightened awareness of changes in their body. This vigilance interacted with trauma from the AIDS- crisis years, and ongoing homophobia and HIV stigma, to heighten minority stress (Meyer 2019). Self-monitoring was in tension with a desire to put HIV into the background of life and focus on quality of life beyond viral suppression.

In Queensland, the use of biomedical markers such as undetectable viral load to set the limit of state-funded support services, had left most long-term HIV survivors facing ageing without adequate psychosocial supports. Participants were experiencing a range of treatment side-effects, fatigue, memory problems and comorbidities despite undetectable viral load. Decades of survival on the Disability Support Pension was associated with limited options to sustain quality of life.

In response to a ‘death sentence’ diagnosis many participants had adopted a ‘live for today’ mode which persisted into the biomedical era, resulting in little planning for old age. Even thinking about the future could provoke debilitating anxiety. The participants had led quite adventurous lives before diagnosis, but usually now led a quiet life to avoid being overwhelmed as they negotiated the limits of cognitive, psychological and physical resources.

Discussion and Implications

Regional areas can be experienced as a therapeutic landscape, despite high levels of homophobia and HIV-related stigma that constrain development of a good quality of life, but ageing with HIV in regional Queensland is challenging. Ongoing stigma related to HIV, ageism and homophobia, all test individual resilience and limit quality of life. Collective resilience as a protective strategy is underutilised and participants were frustrated by limited opportunities to contribute meaningfully to community.

There is need to develop HIV and ageing literacy in people ageing with HIV, and better educational resources about support options as well as support to navigate access to health and social services. Aged care providers need to earn trust by explicitly demonstrating competence to provide safe LGBTI and HIV person-centred care. Scaling up the volunteer-based LGBTI community visitor’s scheme to regional Queensland would provide opportunities to volunteer, a safety net for gay men living alone, and break down social isolation.

Declaration by author

This thesis is composed of my original work, and contains no material previously published or written by another person except where due reference has been made in the text. I have clearly stated the contribution by others to jointly-authored works that I have included in my thesis.

I have clearly stated the contribution of others to my thesis as a whole, including statistical assistance, survey design, data analysis, significant technical procedures, professional editorial advice, financial support and any other original research work used or reported in my thesis. The content of my thesis is the result of work I have carried out since the commencement of my higher degree by research candidature and does not include a substantial part of work that has been submitted to qualify for the award of any other degree or diploma in any university or other tertiary institution. I have clearly stated which parts of my thesis, if any, have been submitted to qualify for another award.

I acknowledge that an electronic copy of my thesis must be lodged with the University Library and, subject to the policy and procedures of The University of Queensland, the thesis be made available for research and study in accordance with the Copyright Act 1968 unless a period of embargo has been approved by the Dean of the Graduate School.

I acknowledge that copyright of all material contained in my thesis resides with the copyright holder(s) of that material. Where appropriate I have obtained copyright permission from the copyright holder to reproduce material in this thesis and have sought permission from co-authors for any jointly authored works included in the thesis.

Publications included in this thesis

No publications included.

Submitted manuscripts included in this thesis

No manuscripts submitted for publication.

Other publications during candidature

Report

Fitzgerald, L, Mutch, A, Howard, C, Hannan, K, Gardiner, B, Bolsewicz, K, Herron, L, Vallely, A and Whittaker, A 2020, The Living Positive in Queensland Report, University of Queensland and QPP, Brisbane.

Peer Reviewed Paper: Gardiner, B 2018, ‘Grit and stigma: gay men ageing with HIV in regional Queensland’, Journal of Sociology, vol. 54, no. 2, pp. 214–225. https://journals.sagepub.com/doi/full/10.1177/1440783318766162

Article:

Gardiner, B 2015, ‘Contributing to the Common Good’, QPP Alive, April, p. 19–20.

Conference Presentations:

Gardiner, B and Davis, M, 2018, ‘Thing is, we probably could: Trialling community led LGBTI Suicide Prevention in Brisbane North’, 10th National LGBTI Health Conference, Sydney.

Gardiner, B 2017, ‘Defying disability in ageing with HIV in regional Queensland’, presented at 3rd National LGBTI Ageing and Aged Care Conference, Melbourne.

Gardiner, B 2016, ‘Thick and thin solidarity’, presented at 16th Australian Homosexual Histories Conference, Melbourne.

Gardiner, B 2015, ‘Breathing Space: The lived experience of ageing with HIV in regional Queensland’, presented at 2nd National LGBTI Ageing and Aged Care Conference, Melbourne.

Gardiner, B, Fitzgerald L, Lui, CW, Bolsewicz. K and Whittaker A 2015, ‘The lived experience of long-term survivors ageing with HIV in regional Queensland: preliminary findings of a longitudinal qualitative study’, presented at the 26th Australasian HIV and AIDS Conference and STI and HIV World Congress, 16–18 September, Brisbane.

Fitzgerald, L, Whittaker, A, Gardiner, B, Bolsewicz, K, Hannan, K, Lambert, S, Stanton, S and Vallely, A 2015, ‘(Changing) biotechnologies in the lives of people living with HIV

7 in regional and rural Queensland, Australia’, poster presented at 26th Australasian HIV and AIDS Conference and STI and HIV World 2015 Congress, Brisbane. Bolsewicz, K, Fitzgerald, L, Debattista, J, Gardiner, B and Whittaker, A 2015, ‘Personal decisions around anti-retroviral therapies (ART): findings from the literature and from a qualitative longitudinal study with people living with HIV in regional Queensland, Australia’, poster presented at 26th Australasian HIV and AIDS Conference and STI and HIV World 2015 Congress, Brisbane. Gardiner, B 2014, ‘The Lived Experience of Disability and Ageing with HIV in the Queensland Bush’, presented in the Disability Networking Zone, The Global Village, 20th International AIDS Conference, Melbourne.

Seminar and Roundtable Presentations:

Gardiner, B 2019, Invited delegate, 3rd National LGBTI Ageing Roundtable. National LGBTI Health Alliance, 23 October, Melbourne. Gardiner, B 2019, ‘HIV and Ageing: Insights from the LPQ Study’, presented at National HIV, Ageing and Quality of Life Roundtable, Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM), 23 August, Holiday Inn Melbourne Airport.

Gardiner, B 2019, Chair and Facilitator, Reflection Ceremony, National Suicide Prevention Conference, 24 July, Pullman Albert Park, Melbourne.

Gardiner, B 2019, ‘Overview of 4 Decades of HIV Prevention Campaigns’, presented at the QuAC’s #comePrepd Poster Project Launch, Powerhouse, Brisbane, 21st June.

Gardiner, B 2018, ‘HIV and Ageing’, presented at Planning for Action (LGBTI inclusive outcomes in ageing and aged care), Val’s Forum 24 October, Melbourne.

Gardiner, B 2018, ‘Living Positive in Queensland’, Ageing Issues Panel, Pride Fair 22 September, Brisbane.

Gardiner, B 2018, ‘HIV and Ageing – findings from the LPQ Study’, HIV and Wellness Workshop # 16 23 June, IRIS Education/ViiV Healthcare, Brisbane (included some slides prepared by Dr Lisa Fitzgerald).

Fitzgerald, L, Gardiner, B and Bolsewicz, K 2017, ‘Living Positive in Queensland Study Overview’, HIV Research and Program Update 9 June, HIV Foundation Queensland.

Fitzgerald, L, Gardiner, B, Howard, C and Williams, G 2017, ‘Living and Ageing with HIV – how well are we doing on the 4th 90?’, Sexual Health Society of Queensland, Clinical Meeting held at Faculty of Medicine, The University of Queensland, 21 November.

Gardiner, B, 2016, ‘Track E Lead Rapporteur Report’, presented at 21st International AIDS Conference 6–10 July, Durban, South Africa.

Contributions by others to the thesis

Dr Lisa Fitzgerald, Principal Investigator of the Living Positive in Queensland Study, and Dr Chi-Wai Lui provided ongoing advice and support as my supervisors throughout my candidature, and Dr Katarzyna Bolsewicz and Kate Hannan were enthusiastic contributors to the LPQ team including debriefing and other meetings were we shared perspectives on the data. Kate Hannan arranged many of the interview appointments and liaised with transcribers. I co-interviewed with Dr Bolsewicz on four occasions and we supported each other in the field.

Associate Professor Deirdre McLaughlin, Associate Professor Mark Brough, Associate Professor Allyson Mutch, Dr Judith Dean, Dr Lennert Veerman, and Dr Andrew Smirnov provided guidance at the Confirmation, Mid-Candidature and Thesis Review milestones.

I received training in writing qualitative research and grounded theory methods from Professor Cathy Charmaz, and NVivo from Dr Chi-Wai Lui and Adroit Research.

I am very grateful for all this assistance.

Statement of parts of the thesis submitted to qualify for the award of another degree

None.

Ethics

Ethics Approval was granted by the School of Population Health Research Ethics Committee, The University of Queensland for the LPQ Study (HC12405), and separately for this PhD (BG07092014).

Acknowledgements

Kate Rears provided 13 hours of professional editing services, primarily proof reading of the thesis post-examination to ensure consistency.

Chris Howard who worked for Positive Directions and then Queensland Positive People was a particularly active and insightful collaborator throughout the study.

Throughout this journey, Charoensak Srikanchana, my partner of 23 years, provided unfailing support, kindness and enthusiasm, as well as practical support such as delicious meals for interview teams in the field.

Financial Support

This research was supported by an Australian Government Research Training Program Scholarship (Australian Postgraduate Award 2013–2016) and was undertaken within a project funded by a Linkage Grant from the Australian Research Council (LP1100200318) including a contribution from Queensland Health.

Keywords

HIV, ageing, gay men, rural, regional, Queensland, longitudinal, qualitative, lived experience.

Australian and New Zealand Standard Research Classifications (ANZSRC)

ANZSRC code: 111799 Public Health and Health Services not elsewhere classified 60%

ANZSRC code: 160512 Social Policy 40%

Fields of Research (FoR) Classification

FoR code: 1117 Public Health and Health Services 60%

FoR code: 1608 Sociology 30%

FoR code: 1605 Policy and Administration 10%

Table of Contents

Chapter 1 Introduction ...... 25

1.1 Introduction ...... 25

1.2 PLHIV involvement in the response to HIV ...... 26

1.3 PLHIV in regional Queensland...... 28

1.4 An emerging challenge: Growing older with HIV ...... 30

1.5 Research questions ...... 32

1.6 Significance of the thesis ...... 33

1.7 Thesis structure ...... 34

Chapter 2 Literature Review: Ageing with HIV ...... 36

1.1 Introduction ...... 36

2.1 Theories of ageing and homosexual men ...... 36

2.2 Theories of ageing and PLHIV ...... 42

2.3 Physical health experiences of ageing with HIV ...... 48

2.4 Psychosocial experiences of ageing with HIV ...... 57

2.5 Lived experiences of ageing with HIV ...... 63

2.6 Addressing the gaps in knowledge ...... 69

Chapter 3 Historical Context of Queensland’s Response to HIV ...... 74

3.1 Introduction ...... 74

3.2 The foundations of a community-based response to the AIDS crisis ...... 75

3.3 Historical context and the epidemic ...... 78

3.3.1 The early AIDS-crisis era (1981–1989) ...... 79

3.3.2 The late AIDS crisis era (1990–1996) ...... 87

3.3.3 The post-crisis era (1997–2009) ...... 90

3.3.4 The biomedical era (2010 onwards) ...... 92

3.4 Bearing Witness: My Story ...... 97

3.4.1 Foundations ...... 98

3.4.2 Era 1 ...... 100

3.4.3 Era 2 ...... 103

3.4.4 Era 3 ...... 104

3.4.5 Era 4 ...... 109

3.5 Conclusion ...... 110

Chapter 4 Methods ...... 112

4.1 Introduction ...... 112

4.2 Relation to the Living Positive in Queensland (LPQ) study ...... 113

4.3 Research design: Qualitative Longitudinal Research (QLR) ...... 115

4.4 Conceptual framework ...... 117

4.5 Recruitment and sampling ...... 119

4.6 The method of semi-structured interviews ...... 120

4.7 Data management ...... 125

4.8 Data analysis ...... 126

4.8.1 Stage 1: Data immersion ...... 127

4.8.2 Stage 2: Coding ...... 128

4.8.3 Stage 3: Creating categories ...... 128

4.8.4 Stage 4: Generation of themes ...... 129

4.9 Rigour and Validity ...... 131

4.9.1 Prolonged engagement ...... 132

4.9.2 Thick description ...... 132

4.9.3 Peer review and debriefing...... 132

4.9.4 Analysis of negative cases ...... 134

4.10 Researcher subjectivity and reflexivity ...... 135

4.11 Ethical considerations, consent and care of participants ...... 138

4.12 Conclusion ...... 141

Chapter 5 Introducing the Participants: Era of Diagnosis as Context for Ageing ...... 142

5.1 Era 1: Early AIDS Crisis (1981–1989) ...... 144

5.2 Era 2: Participants diagnosed in the late AIDS-crisis era (1991–1996) ...... 149

5.3 Era 3: Participants diagnosed in the post-crisis era (1997–2010) ...... 152

5.4 Era 4: Participants diagnosed in the biomedical era (2010 onwards) ...... 156

5.5 Conclusions ...... 160

Chapter 6 Physical Health Experiences of Ageing with HIV ...... 162

6.1 Introduction ...... 162

6.2 ‘Wearing out sooner’: disability and comorbidities accumulate with ageing ...... 164

6.2.1 Pre-existing disability ...... 168

6.3 ‘Can’t remember a flaming thing’: Cognitive decline ...... 173

6.4 Finding and living within new limits ...... 181

6.5 Evolving patterns of self-care with the clinician as partner and ally ...... 183

6.6 Uncertainty about future physical care access ...... 193

6.7 Conclusions ...... 196

Chapter 7 Psychosocial Experiences of Ageing with HIV ...... 199

7.1 Introduction ...... 199

7.2 Stigma and collective resilience ...... 200

7.3 Barriers to social participation as an older person ...... 204

7.4 Everyday life and routines ...... 211

7.5 Flying under the radar ...... 215

7.6 Maintaining relationships ...... 221

7.7 Conclusion ...... 228

Chapter 8 Discussion and Conclusion: Coping with Challenges to Ageing Well with HIV ……………………………………………………………………………………...231

8.1 Introduction ...... 231

8.2 Major finding 1: Ageing with HIV involved managing increasing physical suffering, comorbidities and disabilities ...... 233

8.3 Major finding 2: Biomedicalisation of the response has neglected psychosocial suffering leaving PLHIV feeling somewhat abandoned to their fate ...... 235

8.4 Major finding 3: Ageing with HIV involved increasing complexity of daily living, which is driving a return to uncertainty about future quality of life ...... 241

8.5 Theoretical contributions ...... 245

8.6 Limitations of the study ...... 248

8.7 Policy implications ...... 249

8.8 Dissemination of findings ...... 256

8.9 The final word ...... 258

References ...... 260

Appendix ...... 300

Appendix 1 – Information for participants ...... 300

Appendix 2 – Consent form ...... 302

Appendix 3 – Guide for Interview One...... 303

Appendix 4 – Guide for Interview Two...... 306

Appendix 5 – Newsletters to participants: November 2013 ...... 309

Appendix 6 – Newsletters to participants: April 2014 ...... 311

Appendix 7 – Newsletters to participants: July 2015 ...... 313

Appendix 8 – Newsletters to participants: September 2016 ...... 315

Appendix 9 – Ethics approval letter……………...…………………………………………317

List of Tables

Table 1: Phases, years and eras of the HIV epidemic...... 79

Table 2: Elements of life course theory, based on Elder et al. 2003 (p. 16)...... 117

Table 3: Steps in production of themes for Ageing with HIV content in T1 and T2 transcripts...... 130

Table 4: Participant grouping and pseudonyms. Case studies in italics. In age descending order with each era...... 142

Table 5: Diversity of personal characteristics of case studies...... 144

Table 6: Participants diagnosed in the early AIDS-crisis era 1981–1989. Descending age order (n=10)...... 145

Table 7: Participants diagnosed in the late AIDS-crisis era 1990–1996. Descending age order (n=8)...... 149

Table 8: Participants diagnosed in the post-crisis era 1997–2010. Descending age order (n=10)...... 153

Table 9: Participants diagnosed in the biomedical era 2010 onwards. Descending age order (n=4)...... 157

Table 10: Changing profile of effects of treatment as treatment evolved...... 165

Table 11: Impairments reported by participants, by era diagnosed with HIV. Excludes mental health (n=17)...... 167

Table 12: Range of relationship types between PLHIV, s100 providers and GPs ...... 185

Table 13: Paid and unpaid (volunteer) work by era diagnosed with HIV. Volunteering shown in brackets. n = 32. *participant became unemployed at T2. A second E1 participant was employed for months between interviews, but unemployed again at T2. 207

Table 14: Summary of domains of complex interactions with ageing as reported by participants...... 242

List of Figures

Figure 1: Comparison of metropolitan and non-metropolitan population change by jurisdiction. Source: Jansson and Janson 2012, p. 3...... 29

Figure 2: Estimated profile of PLHIV in Australia over time as an age distribution. Source: Jansson and Wilson 2012, p. 2...... 30

Figure 3: Adding a 4th 90 to include quality of life. Source: Lazurus 2018...... 32

Figure 4: Cycle of invisibility—a model for understanding exclusion. From: Silver Rainbow 2018...... 41

Figure 5: Rowe and Kahn’s model of successful ageing as represented in O'Doherty, KC and Hodgetts (eds) 2019, p. 434...... 44

Figure 6: Example of an HIV-related disability career. Source: O'Brien et al. 2008, p. 1481...... 47

Figure 7: Model of disability experienced by adults ageing with HIV. Source: Solomon et al. 2014b, p. 521...... 48

Figure 8: Factors suggested to be causally associated with premature complications associated with ageing. Source: Deeks and Phillips 2009, p. 289...... 49

Figure 9: Functional interconnections between hallmarks of ageing. Source: Lopez-Otin et al. 2013, p. 2107...... 52

Figure 10: The Minority Stress Model. Source: Meyer 2003, p. 679...... 58

Figure 11: National HIV incidence in Australia 1980–1993. Year, HIV incidence estimates, and federal funding (AUD$ million). From: Plummer and Irwin 2006, p. 790...... 82

List of Images

Image 1: Gays Depraved Joh Claims: AIDS linked to Labor policy. Source: Daily Sun, 23 November 1984 [from Robinson 2009, p. 6.] ...... 77

Image 2: Cover of the Medical Journal of Australia, June 1983...... 84

Image 3: Police tear out uni condom machine. From: The Courier Mail, 1 September 1987...... 85

Image 4: National AIDS Conference, Hobart, 6 August 1988. Source: abc.net.au...... 87

Image 5: Student identity card: Bernard Gardiner, 1975...... 99

Image 6: Bernard Gardiner launching ++-=1 campaign with the AFAO Gay Education Strategies Project, 1996. Photo: WSO, Issue 111...... 103

Image 7: Article in Melbourne Community Voice upon appointment to IFRC. MCV, 17 May 2002...... 105

Image 9: IFRC HIV Global Programme Model. From: Reducing household vulnerability to HIV and AIDS and Tuberculosis, IFRC Update 2003, p. 11...... 107

Image 10: RCRC+ members in red shirts marching with IFRC Vice President, IDAHO Rally 2008, Mexico City (Gardiner in black cap far right 2nd row). Photo: Chris Black, IFRC. .. 108

Image 11: Opening ceremony of Living 2008, Mexico City. Bernard Gardiner (left) organising committee member and IFRC representative, with Dr Kevin Moody, CEO, GNP+. Photo: Rodrigo Pascal...... 109

Image 12: First draft thematic mapping for Daily Activity category. Research diary entry 17 May 2016...... 129

Image 13: Clinical/treatment services milestones. Howard and QPP 2018 ...... 194

Image 14: Purchasing priorities HIV treatment and care services. Howard and QPP 2018 ...... 195

Image 15: Federal electorates in Central and North Queensland. Source: Australian Electoral Commission (2019)...... 216

List of Abbreviations used in the thesis

ABI Acquired Brain Injury

ART Anti-retroviral Therapy, see also HAART

AIDS Acquired Immune Deficiency Syndrome

ASS AIDS Survivor Syndrome

CVS Community Visitors Scheme

DSM Diagnostic and Statistical Manual of Mental Disorders

DSP Disability Support Pension

E1 Era 1 of the HIV epidemic (i.e., Early AIDS-crisis phase), 1981–1989

E2 Era 2 of the HIV epidemic (i.e., Late AIDS-crisis phase), 1990–1996

E3 Era 3 of the HIV epidemic (i.e., Post-crisis phase), 1997–2000

E4 Era 4 of the HIV epidemic (i.e., Biomedical phase), 2010 onwards

GIPA/MIPA Greater (and meaningful) involvement of PLHIV in every level of the HIV response

GP General Practitioner

GNP+ Global Network of PLHIV

HAART Highly Active Anti-Retroviral Therapy, see also ART

HAND HIV Associated Neurological Decline

HIV Human Immunodeficiency Virus

HIV+ HIV positive (i.e., test detected antibodies to HIV)

HIV- HIV negative (i.e., test did not detect antibodies to HIV)

IFRC International Federation of Red Cross and Red Crescent Societies

LGBTI Lesbian, Gay, Bisexual, Transgender and Intersex persons or communities

LTS Long-term survivor

LPQ Study Living Positive in Queensland Study

MSM Men who have sex with men

NAPWHA National Association of People with HIV Australia

NGO Non-Government Organisation

PEP Post-exposure prophylaxis (i.e., drugs taken with 72 hrs of exposure to prevent HIV infection)

PD Positive Directions, Anglicare (2004 - 2015)

PLHIV People Living with HIV

PrEP Pre-exposure prophylaxis (i.e., drugs, usually Truvada), taken to prevent HIV infection

PTSD Post-Traumatic Stress Disorder

T1 Time 1 (i.e., first interview conducted mainly between July 2013 and October 2014, plus one recently diagnosed participant over 70 years of age in late 2015)

T2 Time 2 (i.e., second interview conducted mainly between November 2014 and December 2015, plus a few in 2016)

QLR Qualitative Longitudinal Research

QPP Queensland Positive People (auspiced by QuAC from 1989–2003, the incorporated late 2003)

QuAC Queensland AIDS Council founded in 1984, rebranded Queensland Association for Healthy Communities (QAHC) from 2006–2013, then

back to QuAC until the AGM November 2019 when it rebranded as Queensland Council for LGBTI Health (QC) s100 The class of HIV treatments drugs that only accredited doctors can prescribe

VAC/GMHC Victorian AIDS Council and Gay Men’s Health Centre (founded 1983, rebranded as VAC in 2016, then from 2018 as Thorne Harbour Health)

WHO World Health Organization

Chapter 1 Introduction

1.1 Introduction

The medical and community services that developed in the first decades of the Human Immunodeficiency Virus (HIV) epidemic had little need of expertise in the area of ageing. Prior to the introduction of anti-retroviral treatment (ART) in 1996 in Australia, people living with HIV (PLHIV) tended to be diagnosed at a young age and did not live long enough to grow old (Piot et al. 2001). During this period, less than 30% of PLHIV survived more than two years following an Acquired Immune Deficiency Syndrome (AIDS) diagnosis, and 4,648 Australian gay men died of AIDS- related complications (The Kirby Institute 1997, p. 31–32).

PLHIV who survived the early AIDS-crisis in Australia, are now middle-aged or older and most are gay men. This first generation of PLHIV have lived through constant change and uncertainty, including the hollowing out of their generation as many of their peers died before the advent of effective treatment (Ariss 1997; Halkitis 2014; Power 2011). The lived experiences of this first generation of PLHIV provides a critical opportunity to gain knowledge and understanding of ageing with HIV. Anderson (2016) suggests the difficulties associated with maintaining quality of life for long-term survivors has been underestimated, and the voices of PLHIV are not being heard. In Queensland, where this research is situated, service provision for PLHIV has reduced as successive state governments have implemented programmes of fiscal conservatism and biomedical management (Howard and Porter 2012), which fail to address the stigma and material challenges faced by many PLHIV (Boucher et al. 2019).

The greying of PLHIV has serious implications for the planning, design and implementation of services that must address their complex needs. It is well recognised the aged care sector, health and psychosocial services, lesbian, gay, bisexual, transgender and intersex (LGBTI) communities and PLHIV are not well prepared for the ‘greying’ and ageing of the epidemic (Emlet et al. 2009; Harris et al. 2015; Commonwealth of Australia 2017; Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) and Senior Rights Service 2019). This thesis provides important insights to address significant gaps in knowledge and inform

future policy and service provision, as it examines the experiences of older gay men and men who have had sex with men (MSM ) living with HIV in regional Queensland.

This first, introductory chapter provides the context for this study and the rationale for the research undertaken, and discusses the significance of this project. Research questions and an outline of the thesis structure are also presented.

1.2 PLHIV involvement in the response to HIV

We condemn attempts to label us as ‘victims’, a term which implies defeat, and we are only occasionally ‘patients’, a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People with AIDS’. (Denver Principles 1983).

This thesis strongly advocates for the inclusion and engagement of PLHIV who are ageing in the design and development of policy and service provision that actively meet their needs. Such an approach is consistent with Australia’s efforts since the beginning of the HIV epidemic, when communities, governments, researchers, clinicians and the pharmaceutical industry sought to place PLHIV at the centre of the response (Fitzgerald et al. 2019). PLHIV activists disclosed their status to educate others and actively participate in prevention efforts (Karpf et al. 2008; Kielmann and Cataldo 2010). Inclusion of the priorities, knowledge and expertise of those receiving prevention, care and treatment services in the co-design and implementation of policies and programmes was endorsed by the Joint United Nations Programme on HIV/AIDS (UNAIDS) with the principles of greater and meaningful involvement of PLHIV (GIPA/MIPA) (UNAIDS 2007). These principles were based on the 1983 Denver Declaration and the 1994 Paris AIDS Summit (UNAIDS 2007) and were informed by feminist health principles derived from the political and social analyses of the women's movement and the gay liberation movement (Strub 2014). The principles of GIPA/MIPA, including to ‘support a greater involvement of PLHIV at all…levels…and to…stimulate the creation of supportive political, legal and social environments (UNAIDS 1999, p. 11) foregrounded ‘living with HIV’ as an identity and a practice and highlight the significant historical investment that has been made in challenging the stigma and discrimination many experience (Piot 2012).

Gay men have a long history of countering stigma and discrimination, particularly the biomedical pathologizing of homosexuality. The gay liberation movement adopted a human rights perspective that ‘loosened the grip of medical constructs of homosexuality’ (Ariss 1997, p. 18). A key milestone was the removal of homosexuality from the Australian and New Zealand College of Psychiatrists’ list of mental disorders in 1974 (Moore 2001). However, the emergence of AIDS among gay communities reignited distrust and threatened to re-pathologize gay identity as HIV and homosexuality were ‘forced into connection becoming mutually constitutive’ (Flowers and Davis 2013, p. 286). Gay men were blamed for the epidemic and homosexuality was equated with a disease needing to be bought under the control of medical authority (Altman 1971; Moore 2001). Labels such as ‘gay plague’ and ‘AIDS victim’ were also part of a social discrediting process (Ariss 1997; Goffman 1963) and used by media to shape the construction of HIV in public discourse (Lupton 1994; Sendziuk 2003), and apportion judgement and criminality using headlines such as ‘AIDS Assassins’ (McKay et al. 2011, p. 20).

In the face of individual and community annihilation (Rofes 1998; France 2016), the Australian gay community’s response to the HIV crisis was an extraordinary mobilisation—with PLHIV at the centre (Hurley 2003; Fitzgerald et al. 2019; Poulton et al. 2013; Robinson 2009; Robinson 2010b). Mobilisation of the gay community was characterised by courage and determination to care for their own (Power 2011) and support those traumatised at the epicentre of the epidemic (Halkitis 2014). As Halkitis (2014, p. 208) argues, the coming out experiences of gay men may underpin the resilience of many of those living long term with HIV who have adapted to uncertainty and frequent changes in their circumstances.

The PLHIV movement emphasised the need for collective and individual empowerment, including partnership with health care providers (Whittaker 1992), and resistance of a ‘sick role’ characterised by passivity (Parsons 1951). The gay community advocated for the medical system to move away from patronising models of care (Fitzgerald et al. 2019). The empowerment of PLHIV, and the dissemination of detailed treatment information by PLHIV organisations, enabled PLHIV to engage in an active health care partnership with clinicians (Power 2011). This required PLHIV to stay comprehensively informed about cutting edge research in HIV

management, and maintain an active role in their treatment and care decisions (Bradford 2018).

Effective treatment became available in 1996, making HIV an increasingly manageable, chronic condition (Swendeman et al. 2009; Boucher et al. 2019). However, today many people who have been living long-term with HIV are experiencing complex multi-morbidities and high rates of depression, frequently linked to ongoing HIV-related stigma (Emlet 2007). Stangl and colleagues (2013, p. 9) argue that after 30 years of campaigning, large-scale, effective stigma-reduction strategies are yet to be identified and implemented, so ‘critical challenges and gaps remain’ in creating a safe and supportive social climate for PLHIV.

1.3 PLHIV in regional Queensland

This thesis seeks to explore the experiences of older positive gay men in regional Queensland. For some in the first generation of PLHIV, the move to regional Queensland was a consequence of diagnosis, as they experienced significant career interruptions due to illness, which left them with limited financial resources in later life. Movement away from cities to regional areas was one strategy used to manage changing circumstances and limited resources (Carman et al. 2010). Accommodation and other living costs may be another driver of relocation to escape worsening housing affordability and increasing rental stress in urban areas, while also gaining access improved amenities in the new local environment (Davies 2014).

A pattern of net population gains in non-urban Australia from welfare recipients has been identified in the past (Marshall 2001). Evidence suggests ‘a strong migratory pattern towards Queensland’ among PLHIV still continues (Murry in Slavin and Ogier 2011, p. 3). It was predicted that percentage increases in the PLHIV population in non-capital city areas would be greater than in capital cities in the five largest Australian states in the 10 years to 2020 (see Figure 1).

Figure 1: Comparison of metropolitan and non-metropolitan population change by jurisdiction. Source: Jansson and Janson 2012, p. 3. Increases in the size of the PLHIV population in regional Queensland follow the pattern of a general trend in Australia of diagnosis occurring in cities within significant gay communities, ‘then slowly moving away from those areas over time, in a fashion akin to spatial diffusion’ (Jansson and Wilson 2012, p. 6).

The migration of PLHIV to regional areas has significant implications for service provision and support services. For many of the first generation of PLHIV currently living in regional areas, the distance from services (Carmen et al. (2010), found nearly one in five people were travelling over 100 km to access clinical services), lack of public transport, and smaller populations are among some of the practical challenges to participation in community life and accessing effective local support (Davis and Bartlett 2008). Regional areas also often lack the infrastructure and experienced health care professionals needed to deliver HIV care and support services, making it more likely PLHIV in these areas will have unmet needs (Schur et al. 2002). Carmen and colleagues (2010) suggest a key challenge for regional communities is finding a workable balance between availability of HIV-specialist services and increasing the HIV competence of mainstream services. Social circumstances are also an important contributor to the quality of life experienced by PLHIV (Power et al. 2016), but social stigma surrounding HIV and homosexuality add to the challenges in regional areas (Berg and Ross 2014).

1.4 An emerging challenge: Growing older with HIV

The population of PLHIV in Australia was predicted to reach almost 30,000 by 2020, with the proportion of those aged over 55 years increasing from 25.3% in 2010 to 44.2% in 2020 (Jansson and Wilson 2012, p. 1 and 3) (see Figure 2).

Figure 2: Estimated profile of PLHIV in Australia over time as an age distribution. Source: Jansson and Wilson 2012, p. 2. The growing numbers of older PLHIV is largely attributed to ART—the death rate due to AIDS decreased dramatically following the advent of viral suppression (Murray et al. 2009). A small number of older people are diagnosed with HIV each year, often after living undetected for a number of years. Those diagnosed late are often MSM who do not identify as gay, so the possibility of HIV infection is often overlooked by clinicians (Smith et al. 2010; The Kirby Institute 2018).

With early diagnosis and optimal treatment and care, PLHIV can now expect a near ‘normal’ life expectancy (Antiretroviral Therapy Cohort Collaboration 2008; May and Ingle 2011). However, quality of life beyond viral suppression cannot be assumed as ART ‘does not fully restore health’ (Deeks 2011, p. 141). The first generation of PLHIV who are ageing face significant risks of stroke and cancer, neurological

decline, bone mineral density loss, and a range of treatment side-effects and damage from early experimental treatment regimens (Levett et al. 2014). Anti-retroviral tolerability can decrease with age, which complicates and limits treatment options leading to sub-optimal regimens, while ageing also inevitably results in a gradual decline of the immune system (AFAO 2010).

While ART is not without limitations, the positive health outcomes arising from viral suppression have resulted in a significant focus on the biomedical response as a principal method for managing HIV. The social impact of living with HIV, particularly among those who are ageing, is frequently overlooked in the current policy agenda. Queensland’s HIV Strategy places significant reliance on biomedical tools, aligned with the UNAIDS 90-90-90 approach and targets (Queensland Government 2016). The 90-90-90 target promotes universal testing and treatment with the aim that by 2020 90% of PLHIV will know they have HIV; of those diagnosed, 90% will adhere to treatment, and this will lead to viral suppression for 90% of those on treatment (UNAIDS 2014b). Australia had already reached 89%, 87% and 95%, respectively, on these targets by 2017 (The Kirby Institute 2018). However, this biomedicalised1 approach alone will not end onwards transmission of HIV (Scott et al. 2018), and the targets fail to address quality of life for PLHIV beyond viral suppression.

In response to the elevation of viral suppression as an end point, and failing to consider quality of life for PLHIV, Lazarus et al. (2016) proposed the addition of a fourth ‘90’ target focused on quality of life. As Figure 3 illustrates, quality of life is pertinent regardless of viral status and goes well beyond treatment concerns. To achieve this fourth ‘90’, national responses must monitor quality of life and address deficits. To do this, high quality evidence that considers the lived experiences of PLHIV is pertinent, but to date, the subpopulation of those who are ageing are known the least about. Understanding of the lived experiences and quality of life of older PLHIV is critical.

1 Biomedicalisation describes the process of “defining a problem in medical terms, usually as an illness or disorder, or using a medical intervention to treat it” (van Dijk et al. 2016, p. 619).

Figure 3: Adding a 4th 90 to include quality of life. Source: Lazurus 2018. 1.5 Research questions

Currently, there is a significant gap in research investigating the emerging challenge of ageing with HIV, particularly in regional areas that have seen a significant migration of PLHIV. In this thesis, I explore the experiences of ageing among gay and MSM PLHIV in regional Queensland. This thesis focuses on PLHIV who are aged 50 years and over, and Aboriginal and Torres Strait Islander men who are aged 40 years and over. The latter reflects the nearly 10 years’ reduced life expectancy experienced by the Aboriginal and Torres Strait Islander population in Australia (Australian Institute of Health and Welfare (AIHW) 2014). The thesis aims to understand the complexities and intersections of experiences of HIV, ageing and other social determinants of health in regional Queensland, and give voice to the gay men and other MSM who are ageing with HIV in regional Queensland.

To achieve these aims, the thesis considers the following research questions:

1. What are the physical health experiences of ageing with HIV for gay men and MSM living in regional Queensland?

2. What are the psychosocial experiences of ageing with HIV for gay men and MSM living in regional Queensland?

3. How has the increasing biomedicalisation of the response to HIV in Queensland changed the policy and service contexts and impacted the experiences of gay men and MSM ageing with HIV?

This thesis is an exploration of the lived experience of the first generation of PLHIV surviving into middle and old age with HIV in regional Queensland. In-depth interviews were conducted at two time points in 2013–16 during a time of major changes across HIV strategies, funding and service models. The use of a longitudinal approach enabled individuals to be followed over time, establishing a sequence of events and the meaning of those events and changes in participants’ lives. This approach provided insight into the extent and direction of change over time (Caruana et al. 2015). Interviews explored participants’ life histories, health and ageing experiences and social support within the context of community mobilisation, empowerment and biomedical contributions to quality of life.

This study examines how positive gay men and MSM prioritise and manage complex comorbidities and social circumstances across time, and the impact of place on their life trajectory. Such research has been undertaken with other chronic conditions, such as diabetes (Lawton et al. 2009), but little research of this type has been undertaken in relation to HIV. The thesis gives voice to the experiences and future expectations held by this first generation of PLHIV ageing with HIV.

Recommendations for psychosocial and other services relevant to the wellbeing of all long-term survivors, including those diagnosed in middle to old age, are explored through the context of participants’ lives.

1.6 Significance of the thesis

This thesis focuses on the lived experience of gay men and MSM ageing with HIV in regional Queensland. In exploring the experiences of the first generation to age with HIV, this research provides critical insight into the lives of this cohort. The thesis is uniquely positioned to inform emerging biomedical and social science literature considering the interactions between ageing and HIV. Such research is only now beginning to emerge as it follows the ageing of this cohort (UNAIDS 2014).

In this thesis, I gain insight into the experiences of PLHIV, from interviews at two time points, to contribute to understanding the lived experiences of this generation and to inform the policy and service responses required to meet their needs. Ensuring the voices of older PLHIV are heard is essential to ensure legislation, policy and support services are responsive to ongoing and emerging needs as PLHIV age.

Gaining insight into their emerging needs will inform models of multi-morbidity care for positive people due to the expected ‘compression of disease development and functional decline’ in PLHIV (High et al. 2012, p. 4). Furthermore, given the history of partnerships with service providers, and the way this generation of survivors has actively fought for human rights, understandings gained from this thesis may inform the development of client-centred practices within the aged care and disability sectors.

1.7 Thesis structure

This thesis is presented in eight chapters as outlined below:

Chapter 1 is this introductory chapter that set out the context of the research.

Chapter 2 provides an overview of the literature on HIV and ageing, which captures the considerable degree of uncertainty that exists about what PLHIV can expect as they age.

Chapter 3 outlines the historical context of the social status of gay men prior to HIV, and major events during the epidemic, which have shaped participants’ experiences of ageing with HIV. The gay liberation movement provided the foundation for the community-based response to HIV. The evolution of the epidemic is presented in four eras, covering the early and late AIDS-crisis years, the post-crisis era after the first effective treatment breakthrough, and the current biomedical era. This chapter also considers the positioning of the researcher and outlines how I came to undertake this research and the experiences I bring to the process.

Chapter 4 outlines the qualitative methods used to gather and analyse narratives presented by the 32 participants about their life course and lived experience across two time points 12–18 months apart.

Chapter 5 introduces the participants, including four case studies; one for each of the four historical eras outlined in Chapter 3.

Chapters 6 and 7 present the findings about physical and psychosocial challenges of ageing with HIV.

Chapter 8 discusses the implications of the findings presented in Chapters 5–7, and relates these to the literature and historical contexts presented in Chapters 2 and 3. It draws together findings and develops considerations particularly relevant to policy and service planning for the greying of the HIV epidemic in regional Queensland.

Chapter 2 Literature Review: Ageing with HIV

1.1 Introduction

This chapter outlines the literature about ageing with HIV, with a particular focus on HIV positive gay men. I first outline social theories of ageing and the most recent work on ageing and LGBTI communities. The little qualitative research available about the lived experience of ageing with HIV will be reviewed, followed by the literature on the physical aspects of ageing with HIV, including the debate about the possibility of accentuated and/or accelerated ageing. Attention then turns to the psychosocial aspects of ageing with HIV, including research about the role of multiple stigmas associated with sexual identity, HIV, and indigeneity, which must be understood in relation to each other. The research gaps to be addressed by the research questions for this study will conclude the chapter.

2.1 Theories of ageing and homosexual men

Theories of ageing developed in Western contexts have often emerged from notions related to heterosexual experiences of ageing. The heteronormative assumptions implicit in much ageing research limits how applicable mainstream theories of ageing are to gay men, and particularly gay men living with HIV. For many, the lives of homosexual men have ‘remained largely silenced’, the process of understanding their experiences and needs is underdeveloped (Fredriksen-Goldsen and Muraco 2010, p. 373). Understanding the experiences and needs of older LGBTI people is essential as the impact of the historical treatment of LGBTI people means it is inadequate for service providers to ‘treat everyone the same’ as they have not all had the benefits of heterosexual privilege (Barrett and Stephens 2012; Crameri et al. 2015b). HIV and gay identities are closely interwoven, and both face challenges of being obscured by heteronormative ageing research (Flowers and Davis 2013).

It is only in the past decade that significant research has been undertaken to break the invisibility of LGBTI elders. The UK-based organisation Stonewall commissioned a survey to compare older homosexual and heterosexual people (Guasp 2010). That research found statistically significant differences across multiple domains and identified a group of lesbian, gay and bisexual people who were more likely to live

alone, be estranged from their families, and have weak informal support and social networks. Due to past discrimination these people were not optimistic about the future and were profoundly uncertain about the capacity of care and social services to respond to their specific needs. The research demonstrated that older gay people did not access the services they need as they were ‘genuinely afraid’ (Guasp 2010, p. 2).

A 2010 review of 58 published articles on ageing and sexual orientation that used a life course perspective outlined how research reflected historical developments in the social standing of LGBTI people (Fredriksen-Goldsen and Muraco 2010). Much of the early research on gay men’s ageing countered the prevailing myth that their destiny was inevitably an unhappy and isolated life. As gay men came out in increasing numbers from the 1970s, researchers were inspired to explore identity development and changing social and historical contexts, including the supportive role of LGBTI communities. This highlighted the way gay men’s lives are linked and interdependent. In the new millennium, researchers examined the support needs of gay men and ageing, focused on their experiences of ageing (Fredriksen-Goldsen and Muraco 2010, Hughes 2017). However, Fredriksen-Goldsen and Muraco (2010) critique the limited understanding of LGBTI ageing, as research continues to be descriptive, or ‘more breadth than depth’ (p. 403). Major gaps in understanding of social contexts of LGBTI ageing exist, particularly as these contexts apply to different generations of gay men and locations. Historical changes in the social standings of homosexuality highlight the importance of generational differences and associated contextual effects on LGBTI ageing, or what Fredriksen-Goldsen and Muraco (2010) called ‘the interplay of lives and historical times’ (p. 396). Historical changes over the lifetime mean different cohorts of gay men have experienced markedly different contexts for their identity development, and with the AIDS crisis, major impacts on health at different life stages.

Life course research in the 1980s and 1990s explored the ways inequality is produced by cumulative structural disadvantages across a lifetime (O’Rand 1996). The life course approach examines the ‘trajectories’ of experiences in life domains such as work and relationships, including the ‘transitions’ that mark changes in individual status over time (George 1993, p. 358). The approach tracks how experiences in earlier life accumulate and impact in later years (Elder 1994;

Settersten 1999; George 2017), and the role of historical context in shaping lived experience (Elder 1994). In an important paper, Rosenfeld and colleagues (2012) applied a life course approach to examining cohorts of gay men and argued that a whole generation of gay men experienced the AIDS crisis when they were in their mid-20s to mid-40s, which has influenced their life course. The adult lives of these men have been lived in a context shaped by HIV, which created a cohort effect necessitating a life course perspective to understand the effects of the epidemic on their ageing processes (Rosenfeld et al. 2012). Rosenfeld characterised these effects as casting ‘a long shadow’ over the lives of these men (Rosenfeld 2012, p. 261). This work in the context of the AIDS crisis extended on the prior gender and identity cohorts work she had undertaken as part of a feminist research collective from the mid-1980s (Crawford et al. 1992). That work informed her collaboration with key LGBTI community connected researchers, such as Connell and Dowsett, on HIV and trends in gay men’s sexual practices (Connell et al. 1989).

Elder (1994) also suggested the social change and upheaval experienced by a cohort was likely to shape the path their lives could follow in later life as the cumulative effects of such experiences emerged (Elder 1974). Individuals are interconnected with others in their social environment, and so their lived experiences and choices occur within the options available at that time and place; these trajectories, in turn, impact the lives of those with which they connect. In the case of gay men living with HIV, the gay community was strongly impacted by the illness and death of so many peers and leaders (Elder, 1994). The ‘hollowing out of an entire generation of gay men’ left a legacy of absence as well as cumulative effects as the survivors age (Burki, 2018, p. e154). Such cumulative effects extend beyond social relationships to economic hardship due to disruption of paid employment and the need to rely more on formal health and care services (Rosenfeld et al. 2012). However, the life course approach has rarely been used for research with older PLHIV, a notable exception being exploration of intimacy issues by Wallach and Brotman (2013) early last decade in Canada. Wallace and Brotman (2013) conducted interviews with participants who were experiencing premature ageing, shrinking social networks, age-related rejection, and deterioration in living conditions, in a context where HIV had impacted intergenerational relationships.

In Australia, The Australian Research Centre in Sex, Health and Society (ARCSHS) has been undertaking LGBTI ageing research and translating research into inclusive aged care practice to reduce health disparities for older LGBTI Australians (ARCSHS, 2019). National Private Lives surveys of the health and wellbeing of LGBT Australian were undertaken in 2006 and 2011, identifying the need for further research on ‘how heterosexist attitudes impact on their mental health’ (Leonard et al. 2012, p. 59). This research recognised the special needs of older gay men. Many were likely to have grown up in social conditions that did not facilitate openness about being gay, resulting in many adopting a strategy of concealment, holding things close, and segmenting their lives (Barrett 2008; Menadue 2003; Brown et al. 2015). These conditions adversely affect older gay men’s mental health and wellbeing (Corboz et al. 2008). However, it is also clear from this research that in the face of oppression, many have creatively struggled and found the resilience to navigate difficult social terrains, usually most effectively through collective effort (Crameri et al. 2015; Lyons and Heywood 2016).

Research has found that as gay men grow older, they can grow beyond the trauma of coming to terms with their sexuality, into feeling comfortable in their own skin (Rowntree 2014). This involves overcoming the internalised homophobia cultivated by heteronormative society and resisting anticipated and enacted social stigma and discrimination. The courage to challenge heteronormativity has been proposed as a marker of self-efficacy or hardiness in LGBTI adults (Smith and Gray 2009). However, not disclosing can be a useful self-protective strategy in unsafe environments (Legate et al. 2012). LGBTI identity is not lost with age-related health issues, such as dementia; but how identity is expressed can be adversely affected by the homophobic attitudes of service providers and families of origin, particularly where the elder does not have a partner to act as an advocate (Crameri et al. 2015b). Ageing-related conditions, such as neurological decline, may mean an LGBTI elder loses capacity to judge when it is safe to disclose their sexuality and HIV status, and requires additional protection (Barrett 2008).

Older gay men are a potentially vulnerable group whose quality of life and quality of care would be facilitated by broader community understanding of LGBTI communities (Kendig et al. 2016). A snapshot of the way LGBTI elders are forced back into the closet has been provided by the Sydney group, Mature Aged Gays,

who reported that of their members in nursing homes ‘not a single one…is out’ and members lived in fear of being expelled (Harrison 2005, p. 14). Negative perceptions of aged care can worryingly be extended to preferring euthanasia to the loss of control associated with neglect and abuse in residential aged care (Russell 2017). Older LGBTI Australians are often unaware of home-based aged care options and actively do not plan their aged care needs (Waling et al. 2019). Services need to demonstrate that they are inclusive and safe (Waling et al. 2019; Crameri et al. 2015).

The Australian Royal Commission on Aged Care Quality and Safety, established in October 2018, found the aged care system failed to meet basic care needs, let alone fulfil special needs (Commonwealth of Australia, 2019). The heteronormativity of the aged care sector has meant that many older LGBTI people would not readily disclose their sexual and gender identity, life history, or needs’, setting up a ‘cycle of invisibility’ (Harrison 2005, p. 11). This cycle of invisibility has been described by the Silver Rainbow LGBTI Ageing and Aged Care programme of the National LGBTI Health Alliance as shown in Figure 4. This cycle will not be easily broken; the Australian Bureau of Statistics (ABS) has not included a new question on sexual orientation in the 2021 census despite two federal government departments having indicated they need that data to deliver services (Karp 2019).

Figure 4: Cycle of invisibility—a model for understanding exclusion. From: Silver Rainbow 2018. Over the past decade, significant policy developments have occurred in relation to LGBTI ageing in Australia (Segbedzi et al. 2019). The Federal Government’s aged care reform agenda included recognition of the particular needs of LGBTI elders (Butler 2015). This started with the Australian Productivity Commission recommending strategies to improve the aged care sector’s capacity to respond to the particular needs of LGBTI communities, including provision of aged care packages to LGBTI communities (Hughes 2016). A National LGBTI Ageing and Aged Care Strategy was adopted in 2012 by the Federal Government (Commonwealth of Australia 2012) with an investment in awareness training for the aged care sector on how person-centred care should honour the identity and autonomy of every individual. The Aged Care Act 1997 was amended in 2012 to include LGBTI peoples as a special need group. The Strategy was reviewed in 2017, which led to development of a Diversity Framework and an LGBTI Action Plan, but

these have not been linked to aged care standards with consequences for non- compliance (Segbedzi et al. 2019; Comensoli and Edmonds 2019).

Overcoming systemic barriers to equitable access will be a long-term process (Comensoli and Edmonds 2019). The rights of older Australians were included in the new Aged Care Quality Standards via requirements such as ‘valuing diversity’ and ‘cultural safety’ (Australian Government 2018). However, without understanding among care providers of the cumulative life course effects of homophobia and the HIV epidemic on LGBTI people, the aged care system is far from providing culturally safe and inclusive health and care services and living environments for LGBTI elders (Aged Care Sector Committee Diversity Sub-Group 2019).

There remains strong concern that without independent advocates, LGBTI elders are at risk in the aged care sector due to marginalisation and discrimination that have been ‘perpetrated for decades’ (Comensoli and Edmonds 2019, p. 26). While the policy developments above are a definite improvement, they also highlight that gay men ageing with HIV are a minority within a minority, and their needs are likely to be the most complex to address even within that population. The next section of this review will examine theories of ageing and the experience of living with HIV.

2.2 Theories of ageing and PLHIV

As they age, PLHIV are likely to have particular, additional needs compared to their HIV negative peers. Theories of ageing have rarely conceptualised ageing in a way that reflects the needs and experiences of older gay men living with HIV. This section examines theories of ageing, including those that have addressed the interaction between ageing and HIV.

The past 50 years have seen a move away from models of ageing that underestimated the quality of life that is possible despite the constraints and limitations associated with ageing (Bowling 2005). Early social theories of ageing reflected prevailing social attitudes, framing the growth of an ageing population as problematic. One of the earliest of these social theories, Disengagement Theory attempted to normalise the gradual withdrawal of the elderly from the world as an adjustment to impending death, and concluded that such disengagement was beneficial for society as it made way for younger people to fill the vacated roles

(Cumming and Henry 1961). This theory has been criticised for overlooking the perspectives of the elderly, many of whom remain physically and socially active (Putnam 2002). Activity theory (Havighurst 1961) emphasised maintenance of meaningful roles and activities while ageing as ‘successful’ ageing (Pachana 2016), but did not examine important contextual issues including social inequality, loss of peers, and declines in functioning (Bowling 2005). Continuity theory (Atchley 1999), then proposed continuous adaptation to the challenges of each phase of life as the way to maintain a sense of consistency across the life course, but studied a cohort with adequate resources to maintain continuity of lifestyle. The inadequacy of these social theories inspired a range of social and political economy theories of ageing from the 1970s, but limited analysis of the contribution of structural inequality and the position of minorities continued (Putnam 2002).

The voices of people experiencing ageing were not prominent in early theories of ageing (Rosenfeld et al. 2012). Glass (2003) advocated that, rather than focusing on longevity, researchers should prioritise the values of older populations as they related to living ‘the good life’ (Glass 2003, p. 382). He suggested that the values of older adults themselves would determine what amounted to quality of life and death, which would require clinicians to systematically engage with the expectations of their patients (Glass 2003).

There is now a plethora of literature examining ‘positive, healthy, well, active or “successful ageing”’ (Bowling 2015, p. 6), but there is no common definition of what this means. Rowe and Kahn (1997) posited three interacting domains of successful ageing: low probability of disease and disease related disability, high cognitive and physical functional capacity, and active engagement with life (Figure 5). They countered negative social attitudes to ageing by exposing myths, for example highlighting the extent of volunteerism to show that older people are productive even though they are not in paid work (Rubenstein and de Mederiros 2015). In their model, activity and the engagement with life, was key. Absence of disease and good functional capacity were seen as important, but successful ageing required these to be combined with active engagement with life.

Figure 5: Rowe and Kahn’s model of successful ageing as represented in O'Doherty, KC and Hodgetts (eds) 2019, p. 434.

Applying Rowe and Kahn’s model of successful ageing to PLHIV, the criteria of avoiding disease and disability is unattainable for PLHIV, although efforts to minimise the losses of functioning previously seen as normal, even inevitable, remain relevant (Rowe and Kahn 1997). However, other criteria of success are needed for PLHIV (Solomon et al. 2014) as the model is inadequate for understanding how ‘an individual biography, personal meanings, or lifetime experiences’ might relate to successful ageing outcomes (Rubinstein and de Medeiros 2015, p. 35). Rowe and Kahn (1997) did highlight the importance of interpersonal relations and productive activity, including volunteering, and proposed the concept of resilience to describe the process of recovery from stressful episodes in life. Longitudinal data has been used to test the modifiability of the successful ageing process. Cooney and Curl (2017) found that childhood experiences and social structural factors shape outcomes along with efforts individuals employ to age well.

Resilience in ageing has been examined as a key theme in contemporary ageing literature. Resilience implies an ability to adapt well to adversity, including trauma,

loss, threats and high levels of stress, and is influenced in complex ways by a broad range of biological and psychosocial factors (Southwick et al. 2014). Concepts of resilience have emerged in psychology, in particular from stress and coping theory, which have focused on coping strategies that protect and increase self-esteem and personal agency (Pearlin et al. 1981). Meyer (2019), a key theorist on resilience and minority stress has strongly criticised interpretations of resilience as being overly individualised, and emphasised the importance of collective resilience based in connection to community (Meyer 2019; Meyer 2003). Individualising responsibility is a cornerstone of neoliberal philosophy that drives government disinvestment in community strengthening, advocacy and support services (Howard and Porter 2012; Hughes 2016). That philosophy ignores the role of structural factors in creating disadvantage (Rubinstein and de Medeiros 2015), and tends to blame ‘the victim’ for their circumstances and vulnerability (Kahana and Kahana 2001).

In applying a successful ageing approach to PLHIV, Kahana and Kahana (2001) addressed criticism that most theories of ageing left little room for success among people living with chronic and life-threatening illness, and highlighted how successful ageing was possible for those with disability and/or chronic illness (Kahana and Kahana 2001). They proposed moving beyond emphasis on compliance with medical regimes to embrace adapting to change and stress to maintain quality of life (Kahana and Kahana 2001, 1996; Kahana et al. 2014). They focused on a personal responsibility approach, on the development of each person’s resilience to withstand violence and oppression, rather than the role of collective action to challenge and alter the structural factors that entrench marginalisation.

Other attempts have been made to reconcile successful ageing with living with HIV. Vance and Robinson (2004) suggested that many of the strategies proposed by Baltes and Baltes’s (1990) Selection, Optimization and Compensation (SOC) Theory would also apply to ageing of PLHIV. The SOC theory takes a life course approach and conceptualises development as regulated by selection, optimisations and compensation processes to maximise positives and minimise negatives as circumstances change (Riediger, Freund, and Baltes 2005). Vance and Robinson (2004) emphasised the interaction between physical, social and psychological domains in this process, and the need for a multi-disciplinary approach to providing support services. However, the experiences of PLHIV across their life course have

been exceptionally challenging (Solomon et al. 2014), and the cohort of PLHIV now ageing probably face an accelerated ageing process not adequately addressed by theories of ‘normal’ ageing (Guaraldi et al. 2011).

An aspect of this exceptionality is the amount of physical disability experienced by PLHIV. Disability has been proposed as a framework for understanding both living and ageing with HIV by O’Brien and colleagues (2008). Their Episodic Disability Framework considered the health impacts of HIV and its treatment as constituting disability (O’Brien et al. 2008); disability that is ‘episodic’ in the sense that the conditions may be time limited and degrees of recovery may be possible, rather than representing a fixed and irreversible state (p. 76). From the perspective of their participants, disability was conceptualised as ‘multi-dimensional and episodic characterized by unpredictable periods of wellness and illness’ (O’Brien et al. 2008, p. 76). The way their conditions were variable and episodic across time created an experience of uncertainty. An example given was the way an individual can adjust to HIV diagnosis over time, starting with an experience of ‘devastation’, but ends up feeling that, as a result of HIV, they take better care of their health and wellbeing than before (O’Brien et al. 2008). The disability careers of participants were examined across time, highlighting the fluctuations in symptoms and impairments, the context and strategies adopted that alleviated or exacerbated the disability, and ‘triggers’ or life course turning points that ‘forever altered a person’s life’ (O’Brien et al. 2008, p. 1485). These turning points included HIV diagnosis, loss of others, illnesses, and starting treatment as seen in a sample disability career in Figure 6.

Figure 6: Example of an HIV-related disability career. Source: O'Brien et al. 2008, p. 1481. Solomon et al. (2014) later applied the Episodic Disability Framework to ageing with HIV, with ‘uncertainty or worrying about the future’ (p. 519) at the core of the model, highlighting that health and social service providers needed to support individuals ageing with HIV to cope with such uncertainty. Elements from Figure 6 were reconfigured into a model of disability experienced by adults ageing with HIV, as shown in Figure 7. The decision to put uncertainty at the core of the model emerged from consultation with PLHIV who placed more emphasis on uncertainty than the researchers initially proposed. The model better captures the mutually reinforcing aspects of ageing with HIV and disability.

Figure 7: Model of disability experienced by adults ageing with HIV. Source: Solomon et al. 2014b, p. 521.

2.3 Physical health experiences of ageing with HIV

Even with access to ART and an undetectable viral load, there are ongoing physical health concerns when ageing with HIV. Examining the physical health aspects of living with HIV, and AIDS particularly, requires engagement with the life and death dilemmas of PLHIV (Flower and Davis, 2013). ART is now generally ‘easy to administer, safe, and well tolerated’ (Deeks 2011, p. 141). However, while it reduces chronic systemic inflammation, it does not eliminate it (Nasi et al. 2014). This state is associated with increased risk of diabetes (Brown et al. 2010), cognitive decline (Cohen et al. 2015), cardiovascular events (Duprez et al. 2012) and cancers (Brickman and Palefsky 2015).

The physical aspects of ageing with HIV often impact daily living. PLHIV have often taken a strong interest in new research disseminated via peer publications, such as Positive Living magazine2, to develop the necessary grounding for self-care and treatment and care decision making (Menadue 2003; Poulton et al. 2013). For long- term survivors facing ageing with the cumulative burden of side-effects of treatment and comorbidities, the prognosis can be ‘quite confronting’ (Mendaue 2011, p. 452). Deeks and Phillips (2009) summarised the factors involved as a combined effect of normal ageing, the side-effects of ART and treatments for comorbidities, the ongoing damaging effects of HIV even when suppressed by ART, and lifestyle risk factors that together produce premature ageing, as illustrated in Figure 8.

Figure 8: Factors suggested to be causally associated with premature complications associated with ageing. Source: Deeks and Phillips 2009, p. 289. The positions taken by Deeks and Phillips and others (such as Martin and Volberding 2010; Antiretroviral Therapy Cohort Collaboration 2008) wwere contested

2 Originally published by the Victorian AIDS Council, then later by NAPWHA.

as ‘premature conclusions’ rather than evidence of premature ageing (Fisher and Cooper 2012, p. 1). Fisher and Cooper questioned the validity of the HIV-negative control groups utilised in the studies that concluded premature ageing was occurring. However, the Comorbidity in Relation to AIDS (COBRA) Collaboration quantified the age advancement for those with a nadir CD4 T-cell count less than 200 cells/ul as 3.5 years plus 0.1 years for each month of exposure to the drug saquinavir3 (De Francesco et al. 2019). Older PLHIV tend to have immune system markers (immunosenescence) typical of much older persons (Ndumbi et al. 2015).

The full extent of the involvement of both accentuated and accelerated ageing in PLHIV will not be fully understood without long-term prospective studies with well- matched control groups (Pathai et al. 2014). HIV-related drug trials seldom include older participants which makes generalisation of the results from those trials to older people difficult (Kearney et al. 2010). To a large extent, the evidence to disentangle normal biological ageing and pathologies of ageing, the inflammatory and other effects of long-term HIV infection, and the toxic side-effects of drugs used to treat HIV and comorbidities will only become available as this first generation of PLHIV ages and their experience is carefully monitored (McManus et al. 2012; Deeks et al. 2013; Wing 2016).

Early treatment regimens left long-term survivors with a range of side-effects that complicate the interaction of HIV with the natural ageing process, and in some cases left a legacy of caution about the damage medications can do (Gonzalez et al. 2007; Deeks et al. 2013). The first promising HIV treatment, Zidovudine (AZT), was trialled in high doses from 1987 but by 1990 it was clear the toxicity was enervating and disfiguring. Viral resistance to AZT developed very quickly so any benefit was short lived (Halkitis 2014). Doses were adjusted and combinations of new drugs trialled until the ART breakthrough in 1996 to sustainably suppress HIV. ART has been hailed as ‘one of the greatest achievements of modern medicine’ (Deeks 2011, p. 141; Gulick et al. 1997; Antiretroviral Therapy Cohort Collaboration, 2008). The long- term effects of antiretroviral use are still being discovered (Cahill and Valadez 2013) and in Canada it was recently found that diabetes in PLHIV was overwhelmingly

3 A key protease inhibitor used in combination with other HIV medicines.

linked to exposure to drugs prescribed early in the epidemic, rather than age or body weight (Samad et al. 2017).

As people started treatment earlier, and the years on treatment increased, research into long-term effects of prolonged treatment was needed to fill in the gaps in knowledge about impacts on cardiovascular and renal health, metabolic disorders and the development of fragility (Petoumenos et al. 2017). It has also been observed that managing HIV can prompt PLHIV ‘to take better care of themselves’ than HIV negative peers including routine contact with a doctor (Muwadda4 in Slavin and Ogier 2011, p. 30).

Understanding of the interaction between HIV and ageing is limited by the gaps in what is known about the mechanisms and indicators of ageing without HIV (Lopez- Otin et al. 2013). Research into the biological aspects of ageing began 30 years ago when the first long-lived strains in Caenorhabdditis elegans were isolated enabling knowledge of the molecular and cellular bases of life and disease to expand (Klass 1983; Lopez-Otin et al. 2013). A comprehensive review of the ageing literature proposed nine hallmarks of ageing as ‘genomic instability, telomere attrition, epigenetic alterations, loss of proteostasis, deregulated nutrient sensing, mitochondrial dysfunction, cellular senescence, stem cell exhaustion, and altered intercellular communication’ (Lopez-Otin et al. 2013, p. 1195). Organising the available knowledge into these hallmarks aimed to progress the understanding of the ageing process, which, in turn, would enable a range of diseases to be better treated and prevented. The suggested hallmarks were further clustered into three groups with functional interconnections:

1. The primary hallmarks that initially cause damage to the body

2. The antagonistic hallmarks that respond to and limit that damage but once a certain limit is reached begin to add to the damage

4 Wilo Muwadda is the former Manager of the QuAC Two Spirits programme. The observation was made as part of paying respect to the Indigenous custodians of the country where a NAPWHA meeting on HIV and Ageing was occurring in 2010.

3. The integrative hallmarks arising from the interaction between individual genetics and the environment once the antagonistic hallmarks are overwhelmed, as illustrated in Figure 9:

Figure 9: Functional interconnections between hallmarks of ageing. Source: Lopez-Otin et al. 2013, p. 2107.

Research on the involvement of HIV in most of these hallmarks spheres has been undertaken since 2013 by the COBRA study using humanised immune system mouse models to disentangle the effects of HIV and ART on ageing (Reiss 2013). In many respects, the effects of HIV on the body and the side-effects of HIV treatment, appear to mimic the symptoms of the normal ageing process, making it a challenge to distinguish the dynamics of the interaction between HIV and ageing (Slavin and Ogier 2011). Examples of ageing processes and HIV impacts and their interaction with treatments that are difficult to distinguish include fatigue, bone density decline, sleep disruption and neurological problems (Vance 2010).

Although it is now unusual for people to die of AIDS-related conditions in Australia and AIDS is no longer a notifiable condition in Queensland (Miles 2018), some

groups continue to be diagnosed late5, including bisexual men in non-urban areas (The Kirby Institute 2015). These older people could have been living with HIV for years without knowing until they developed symptoms due to a compromised immune system. The tendency of HIV and ageing symptoms to mirror each other, plus ageism, can mean general practitioners (GPs) and gerontologists miss indicators of HIV infection (Shippy and Karpiak 2005). Clinicians often attribute symptoms, particularly fatigue, to normal ageing (Iwuji et al. 2013; Siegel et al. 2004). An ageist bias also makes discussion of sexual activity and HIV risk assessment less likely to occur, particularly when it is assumed the patient is heterosexual (Sankar et al. 2011; Sharma et al. 2007).

Late diagnosis is associated with worse clinical outcomes and higher mortality due to the damaged immune system (Levett et al. 2014). In the absence of effective treatment, PLHIV aged over 50 years are impacted more strongly by HIV and live for a shorter time after infection than younger untreated people (Vance et al. 2011). This is because a decline in immune system functioning occurs as a normal part of ageing and without effective treatment HIV also damages and further weakens the immune system (Bendavid et al. 2012). The opportunity for optimal management of HIV has been lost, as damage already done to the immune system including the gut, the nervous systems and other organs by HIV is not fully reversible. Even if someone diagnosed late starts treatment immediately, they have permanent elevated lifetime risk of serious illness, including heart attack. This means the outlook for those diagnosed late probably has a lot in common with people diagnosed pre-1996 who also had a low CD4 cell6 nadir.

The population of PLHIV over 50 years is made up of people who were infected with HIV earlier in the epidemic and survived long enough to access ART, and people infected in later life post-ART (High 2012). The experience of older people newly infected with HIV could differ in significant ways from the experiences of long-term

5 Late diagnosis is defined as 350 t-cell count per microlitre whereas AIDS is diagnosed at 200 t-cell count per microlitre (or when an AIDS-defining illness occurs).

6 Often called T-cell or T-helper cell, this is a type of white blood cell that plays a major role in protecting the body from infection.

survivors (Emlet et al. 2017). In the current era those diagnosed soon after infection no longer participate in potentially damaging experimental treatments, and by starting treatment as soon as possible can avoid much of the damage done by untreated HIV (Franco and Saag 2013). However, those diagnosed late in life who are gay community connected may have been also been affected by the epidemic in other ways that negatively impact their health, such as the loss of a partner and supportive social networks, and chronic fear of acquiring HIV (Halkitis 2014).

Early treatment may not avert the damage done to the gut during sero-conversion and establishment of the infection, leading to the hypothesis that alterations at the gastrointestinal-tract level are a key factor in HIV pathogenesis (Gori et al. 2008). A significant amount of the cells of the immune system live in the gut wall and many PLHIV have ongoing problems with absorption and diarrhoea (Gori et al. 2008; Siegel et al. 2010). Although there is little direct research on HIV and the gut, links between the health of the microbiome in the gut and a range of chronic illnesses have been suggested (Holmes et al. 2011).

Despite the limitations of ART to prevent gut damage, its ability to suppress viral load and allow the immune system to control opportunistic infections is impressive (High 2012). Global treatment guidelines agree that older age is a reason to begin treatment early to compensate for the normal age-related declines in the immune system (ASHM 2013). As with any drug regime, concerns about the long-term effects of ART exist, but overall time of exposure to treatment has been shown to be less significant than time spent with the low CD4 count that occurs when there is no treatment. This is convincing evidence that the benefits of commencing treatment as early as possible outweigh the risk of damaging treatment side-effects (Schouten et al. 2014).

‘Normal’ ageing can affect cognition and diseases that arise in older populations (e.g., Alzheimer disease may be accelerated and facilitated by HIV, but since the widespread use of ART the incidence of AIDS-related dementia has declined rapidly (Brew 2010). However, the milder forms of HIV-associated neuro-cognitive disorders are not as effectively impacted by treatment (Fazeli et al. 2014). This is thought to be because concentrations of ART in the brain are at lower levels than in the blood (Singer and Nemanim 2017). The most likely explanation for most

cognitive decline in long-term survivors is the interaction between HIV and the neurological impacts of normal ageing (Brew 2010).

The impact of neurological decline on functioning is an emerging concern (Alford et al. 2019; Singer and Nemanim 2017). Cognitive decline means a person is drawing on fewer cognitive resources to cope and the ability to develop solutions to problems that arise is impaired (Vance 2010). Neurological decline could have a few different isolated or synergistic causes (Singer and Nemanim 2017; Clifford et al. 2017). The CIPHER Study Group working in the European region cautioned that the cause of cognitive decline in PLHIV was difficult to pinpoint as it coincides with self-reported struggles with activities of daily living arising from a range of psychosocial hardships including poverty, anxiety and depression (Laverick et al. 2017). The case has been made for cost-effective social and psychological interventions to address psychosocial wellbeing including management of depression, with anti-depressants only used as a second line back-up (McGorry et al. 2014).

PLHIV are increasingly concerned about how mental functioning interacts with HIV and ageing over the long term (Hopcroft et al. 2013). Hopcroft and colleagues quoted one participant: ‘my body’s a 50-year-old but my brain is definitely an 85- year-old’ (p. 1), to highlight that severe decline has been experienced by some PLHIV. However, only longitudinal studies will answer the many outstanding questions about the impact on HIV on the ageing brain (Solomon et al. 2014b). In their review, Cysique and Brew (2014) concluded that clinicians and PLHIV needed to be proactive and monitor even mild or subclinical symptoms, especially given most studies to date have included few PLHIV aged over 60 years, which is when major neurodegenerative or vascular brain disorders begin to show in the general population.

HIV associated neurological decline (HAND) mainly appears in the literature due to its potential to impact treatment adherence (Ghedi et al. 2013). However, in the absence of cognitive decline and depression, gerontology and HIV research consistently show that older people adhere to treatment more reliably than younger people (Hinkin et al. 2004).

Summaries of relevant biomedical research have been compiled for professionals, including the resource Aged Care Workers and HIV and Ageing (ASHM 2014). This

resource acknowledged PLHIV fears about aged care, and concluded that ‘the Aged Care Worker may need to challenge their own beliefs and attitudes towards such issues as sex and sexuality [ … ] in order to provide the best possible care for PLHIV’ (ibid, p. 8). The resource also devoted two pages to warnings against disclosure of a client’s HIV status without consent, not only because this is unethical but because of the damage it can do to the social circumstances of the PLHIV. The physical health aspects of living and ageing with HIV need to be understood in a holistic way as the physical interacts with emotional and social contexts of each PLHIV.

These advances in managing the physical health of PLHIV occur in a context of rising biomedical dominance of public health, while the importance of lived experiences of PLHIV, community mobilisation and collective empowerment that emphasise the critical role of the broader social and environmental contexts in determining quality of life outcomes are downplayed (Baum 2015). The neoliberalist emphasis on individual responsibility and blame has provided a rationale for withdrawal of government funding for collective empowerment and advocacy programmes that address the social determinants of health, in favor of an exclusive reliance on biomedical solutions (Howard and Porter 2012; Reeders 2012). Social determinants of health are those conditions in which people are born, grow, live, work and age, and acting on these determinants is key to producing health equity (World Health Organization 2008). Use of the word ‘determinants’ could imply such conditions are immutable, but they are open to influence and change. The key to effective action for health equity is not only understanding how the conditions are created, but also partnering with the people whose lived experience is at best thriving against the odds (Salverno and Bogard 2019).

While biomedical technologies provide measures of health that a PLHIV may not be able to otherwise perceive in their body, these indications do not necessarily align with actual bodily experience (Persson et al. 2003). This creates a tension between the biomedical construction of HIV and the meanings PLHIV construct themselves about their lived experiences (Ariss 1997). As neoliberal austerity measures reduce funding for support programmes, expectations could be lowered so that merely coping becomes the accepted standard of wellbeing backed up biomedical markers and classifications (Nettleton 2006). However, historically PLHIV have strived to

negotiate how quality of life can be maintained despite deterioration in physical health (Persson et al. 2003).

2.4 Psychosocial experiences of ageing with HIV

The generation of PLHIV now ageing with HIV organised the initial response to the social and political challenges of AIDS in the early years when little was known, and fear was intense (Power 2011). In the very early phase of the epidemic, HIV antibody testing was not yet available, so all sexually active gay men were living with the possibility they could already have acquired HIV and be the next to fall ill and need palliative care (Poulton et al. 2013). For those who later tested HIV positive, one reaction was to engage in identity management by integrating an AIDS-related identity with ‘other valued aspects of self’ (Sandstrom 1990, p. 271). This involved joining a new community bonded by the experience of living with HIV (Ariss 1997). Activism was often a key element of this identity, which organised into a global movement of PLHIV with a rich history strongly influenced by the gay liberation agenda to render ‘a previously medically defined identity as a social one’ (Ariss 1997, p. 137).

Despite the concerted involvement of PLHIV in all aspects of the response to HIV, enacted social stigma against HIV and AIDS remains strong (Emlet 2006a; Emlet et al. 2015). The experience of discrimination in health services has been consistently reported by PLHIV (Slavin and Ogier 2011), including access to care for noncommunicable diseases to which PLHIV are susceptible (Stockton et al. 2018). HIV- related stigma can lead to a social disconnection where PLHIV do not reach out for fear of social rejection, or distancing, which in turn results in isolation and depression (Shippy and Karpiak 2005). PLHIV in regional areas can be reluctant to access mainstream social networks and services, which can be the only option in non- metropolitan areas (Cahill and Valadez 2013; Siegel et al. 2010). The HIV Futures 8 national survey of PLHIV identified five broad profiles of PLHIV to illustrate differing patterns of health status and access to clinical services (Mikołajczak et al. 2018). The profiles representing people coping well made up the majority and were urban based. Rural participants fell into the profiles that made up about a quarter of the respondents who were facing significant health and social complexities, isolation and barriers to accessing services (Mikołajczak et al. 2018).

For gay men, homophobia interacts with HIV and AIDS stigma to create a ‘double stigma’ and associated ‘minority stress’ which has serious health consequences (Lyons et al. 2010; Roger et al. 2013, p. 300). The minority stress model developed by Meyer (2003) (see Figure 10) describes the processes impacting the health and wellbeing of LGBTI populations and the importance of social support in alleviating stigma-related stress and maintaining mental health (Lyons et al. 2016).

Figure 10: The Minority Stress Model. Source: Meyer 2003, p. 679. The model details that if the social and political environment devalues a minority status this constitutes a disadvantage. Meyer found that stigmatised status included homosexuality, living with HIV, old age and race (Meyer 2003; Meyer 2019). Stress is created by external factors such as discrimination, or internal factors such as ‘internalised homophobia’ driving social withdrawal. Taking on (or internalising) negative social stereotypes about homosexuality, and in a similar process about being HIV positive (HIV+), creates feelings of ‘inferiority, being evil, lacking self-worth and social value’ (Dempsey 1994, p. 161). This stress predisposes gay men to a range of mental and physical health problems (Williamson 2000), including decreased immunity, problem substance use, anxiety and suicidality (Meyer 2003). Some identities are easier to conceal, and social support can also help tip the balance to reduce negative impacts on health outcomes. Meyer (2019) emphasised that resilience is a collective, not just individual, trait. With a community, rather than

an individualised, orientation, interventions to reduce minority stress can be developed. Meyer suggested using his model to design strategies to address the effects represented by blue arrows in Figure 10 (e.g., increasing community supports, or law reform to change circumstances in the environment). The gay community response to HIV has, for decades, utilised this approach of developing strategies to strengthen individual coping, but within a broader awareness that resilience is based on collective agency—meaning the LGBTI and/or PLHIV communities operating as an effective political lobby to bring about positive change (Lyons and Heywood 2016) and to care for its own (Power 2011). The centrality of agency, the determination of PLHIV and LGBTI people to influence their own destiny, has been obvious in activism such as the AIDS Coalition to Unleash Power (ACT-UP) (Ariss 1997; Willett 2014), but also in community-led mass behaviour change for prevention of HIV transmission (Fitzgerald et al. 2019).

A major impact of minority stress is in problem substance use in older PLHIV, which undermines health and wellbeing (Vance et al. 2010). In Australia, the Gay Community Periodic Survey has found recreational drug use is ‘common’ in gay men, with 10.4% of Queensland HIV+ men reported injecting drug use (Lee et al. 2014, p. 5). Smoking is the alterable lifestyle factor most urgently addressed in literature, and justifying harm reduction approaches to assist PLHIV to cease smoking and lessen the risk of heart disease (Fitch et al. 2013; Bell et al. 2017). A Swedish national study of about 3,000 PLHIV and over 10,000 controls found HIV+ smokers lose more life-years to smoking than to HIV (Hellenberg et al. 2013). Limiting alcohol consumption is also critical for PLHIV as they age (Justice et al. 2016). However, smoking and problem drug and alcohol use are not easily reversed without addressing underlying stressors (Kassel et al. 2003; Pateman et al. 2015). These stress-related health impacts may be exacerbated if PLHIV are overwhelmed by the challenges of ageing.

Examples of effective stigma reduction interventions are rare, and contingent on local circumstances difficult to scale up (Pantelic et al. 2019). Programmes aiming to reduce stigma and discrimination have usually failed to change the context that produces stigma, as they have not included some kind of structural intervention to improve the social standing of PLHIV (Pantelic et al. 2019). Missing interventions include economic support, participation in activism and specific life-skills

development, which are not usually included in programmes focused on HIV-related behavior change such as testing, adherence, and management of sexual risk. Consistent with an empowerment approach and the GIPA principles, two of the most successful interventions identified in a systematic review involved PLHIV devising their own anti-stigma campaigns (Pantelic et al. 2019).

Social relationships can provide a buffer against mental health problems and speed up recovery when problems occur (Cohen 2004; Santini et al. 2016). These include strong relationships with an intimate partner, family member and friends. Social connection is critical as high levels of social support buffer against adverse life events (Milner et al. 2016). Studies of men have noted a tendency to reduce social connection with other men as they age, though this may be less pronounced for community connected gay men (Arbes et al. 2014). The importance of social relationships for psychological wellbeing has been compared for PLHIV aged under and over 55 years; older PLHIV had fewer but better quality social ties, and more ability to regulate their emotions in the face of chronic illness (Mavandadi et al. 2009). Vance and Robinson (2004) suggested that long-term survivors have faced and successfully dealt with many challenges, and as a result have well developed ‘crisis competence’ (p. 66), although studies also show that multiple stressors ‘compromise coping abilities’ (Vance et al. 2010, p. 161) and ‘deplete one’s resources to cope’ over time (ibid, p. 160).

Social pressures and discrimination have led many older gay men to have tenuous connections with their biological family. Their informal social support systems are not reinforced by the mainstream social structures that favour biological family, and this casts doubt on the capacity of older gay men’s social networks to respond when emergency care and support is needed (de Vries and Blando 2004). However, this assessment could be a product of heteronormative underestimation of the strength of chosen family7 connections (Emlet 2006b). Many gay men have developed a social care network of chosen family and friends (Shippy and Karpiak 2005; Cantor

7 The gay author Armistead Maupin whose ‘Tales of the City’ series explored the rise of HIV in San Francisco, referred to this social connection as “logical family”, when describing the common experience of people rebuilding their life after rejection by biological family (Maupin 2007, p. 253).

1991) as their identity as a gay man was formed and close connection with family of origin was lost. The capacity of such chosen family to provide support and care varies over the long term but may be particularly weak for gay male long-term survivors of HIV who experienced the loss of much of their generation to AIDS. This loss of well-informed and trusted close connection may be especially critical when the capacity of a PLHIV to make decisions becomes impaired (Brennan-Ing et al. 2014).

Loneliness and isolation are often associated with depression in older people (Grov et al. 2010). Loneliness is not synonymous with social isolation or solitude, which implies a choice to be alone. Depression undermines the ability to age well with HIV, decreases use of services and is associated with poor treatment adherence despite the usual pattern of better adherence in older people (Vance et al. 2010). For older PLHIV, decreased adherence could set up a vicious cycle whereby depression leads to not taking HIV medicines, which in turn leads to depression getting worse (Watkins and Treisman 2012). Males in general are less likely to seek help for mental health problems, although whether this trend generalises to gay men is not clear. Social exclusion and isolation may mean that gay men are more hesitant to seek support through mainstream services, and more likely to rely on informal support networks (Oliver et al. 2005) or LGBTI community controlled services, where these exist (Crameri et al. 2015).

Sexual networking is an important aspect of connecting with others for gay men. The availability of Viagra means that some older men are more sexually active than in previous generations (Vance and Robinson 2004). However, 38.2% of PLHIV in the Australian HIV Futures Seven survey reported having stopped having sex because of their HIV status (Grierson et al. 2013). The idea that older people are not sexually active is an ageist myth, but it is common for older adults to be stereotyped as asexual and/or heterosexual (Emlet 2006). Commercial gay culture has also been critiqued as ageist with a problematic tendency to highly value youth and beauty as desirable, thus negatively stereotyping older gay men and devaluing the attributes associated with ageing (Casey 2007; Robinson 2011). Older gay men complain of becoming invisible and excluded, and for long-term survivors of HIV this is exacerbated by treatment associated body changes that can undermine self- confidence and perceived attractiveness (Deacon et al. 1995; Vance et al. 2010).

While not devaluing the potential of sexual networking to reduce isolation, it has been noted that where HIV positive gay men have greater than average support from other PLHIV they were ‘nearly 40% more likely to reduce their number of casual sex partners or stop casual sex altogether’ (Prestage et al. 2016).

Ageing and living with HIV might elevate risk factors for suicide (Vance and Robinson 2004, p. 66). Over a century ago, it was demonstrated that variations in rates of death by suicide in different cultures and sub-populations were a measure of social positioning and other social factors, rather than just an individual psychological matter (Durkheim 1897 /1951). In 2007 the Australian Bureau of Statistics published the finding that 35% of lesbian, gay, and bisexual people have had suicidal thoughts in their lifetime and 13% had attempted suicide, compared with 13% and 3% respectively for heterosexuals (Australian Bureau of Statistics 2007). Men make up the vast majority of the over 3,000 people who take their own life in Australia each year (Australian Bureau of Statistics, 2016), and relationship breakdown is a clear risk factor for suicide by men (Samaritans 2012). Further to completed suicides is suicidal ideation (thoughts about suicide), which is associated with considerable psychological distress. Suicidal ideation and depression have been identified as impacting the ability to age well with HIV (Vance et al. 2010). Such suicidal ideation is thought to be a likely predictor of later attempts and death by suicide, so can be used as an indicator of the need for support interventions (Milner et al. 2016). A recent Swiss study found that suicide rates for PLHIV had decreased since the introduction of ART, but remain three times greater than the rate in the general population (Ruffieux et al. 2019).

Early experimental treatments sometimes prolonged the life of PLHIV, but provided a very poor quality of life. Voluntary assisted dying to end suffering was openly discussed and exercised in PLHIV circles in the first half of the 1990s, despite it being criminalised (AFAO 1995). With ageing, voluntary assisted dying could re- emerge as a way to take control in the face of multiple morbidities, especially as declines in cognitive functioning threaten the ability to problem solve and cope with stressors (Vance et al. 2010).

Questioning whether life has been well-lived, and how the individual will be remembered can be so significant that the fear of dying is ‘eclipsed by the fear of

meaninglessness’ (Sadler-Gerhardt et al. 2011, p. 2). Emlet related the search for meaning to Erikson’s notion of generativity and identified desire to educate others as one reason PLHIV disclose their HIV status and share their story ‘for the greater good’ (Emlet 2008, p. 715). Legacy has been explored as an important aspect of psychological adjustment as people come to terms with death through passing on their wisdom and finding meaning in what they have contributed or could leave behind (Coward 1994; Bateson 2011).

Age-related stigma exacerbates HIV stigma, increasing the risk of social isolation (Brennan et al. 2011). Scrimshaw and Seigel (2003) identified ageism as a particularly problematic barrier to social support for older PLHIV. Emlet (2006) also found that barriers increase in severity as PLHIV age. The Research on Older Adults with HIV (ROAH) study found that ageing exacerbated a range of existing problems faced by PLHIV, including poorer cognitive and physical functioning, health-induced anxiety and stress, HIV related stigma, and social isolation/loneliness (Grov et al. 2010). These findings provide a rationale for programmes that decrease stigma and facilitate social support, given loneliness and stigma also predict depression. Even in the younger ROAH participants, high levels of psychological distress were common, already suggesting the limitations of relying on treatment alone to produce good quality of life outcomes (ibid).

2.5 Lived experiences of ageing with HIV

Although valuable findings from research are available about the physical and the psychosocial aspects of ageing with HIV, little research has examined the lived experience of ageing using a life course perspective, particularly in regional and rural areas. Few longitudinal studies provide in depth understanding of how PLHIV are ageing with HIV.

The HIV literature has used 50+ years as the demarcation of ‘older’ (Levett et al. 2014). Given there were so few PLHIV aged over 50 years of age early in the epidemic detailed data on that population was not routinely collected and reported by UNAIDS, creating a ‘blind spot’ in the global response (Negin and Cumming 2010). UNAIDS attempted to correct this deficit in data with a Special Supplement Report on Ageing in 2013 (UNAIDS 2013) and a Gap Report in 2014, highlighting that the

needs of PLHIV aged over 50 years have been ‘overlooked, neglected or ignored’ (UNAIDS 2014, p. 270).

Community organisations in the United Kingdom (UK) (Power et al. 2010) and Australia (AFAO 2010) also began to identify needs and provide guidance on ageing to PLHIV and service providers. Uncomfortable emerging issues involved with ageing such as ageing ‘ahead of time’ (AFAO, 2010, p. 1). ‘Immense fears’ about how the aged care sector would cope with gay men and PLHIV in particular (Power et al. 2010, p. 7) were acknowledged but attention then shifted to the exciting potential for new biomedical tools to decrease new infection rates, improve the clinical management of PLHIV, and decrease stigma and discrimination (Kippax et al. 2013).

PLHIV are more likely to be living in poverty, but on other indicators of health are ‘coping comparatively well’ while ageing (Lyons et al. 2010, p. 1236). The Australian Positive and Peers Longevity Evaluation Study (APPLES) identified more comorbidities in PLHIV than in matched HIV-negative peers (Petoumenos et al. 2017). The HIV Futures studies, a series of cross-sectional surveys of PLHIV that have been run by ARCSHS since 1997, show self-reporting of good health and wellbeing has decreased over time, and by 9% between 2015/16 and 2018/19 (Grierson et al. 2013; Power et al. 2019). The severe functional impairment rates identified by a Positive Lives NSW survey led that PLHIV organisation to acknowledge ageing with HIV presents a challenging picture as the 50–64 years age group may be faring worse than their older peers (Feeney 2019).

Few qualitative studies have been specifically designed to capture the lived experience of PLHIV as they age, and the cohorts studied have been dominated by urban gay men. One of the earliest qualitative study of HIV long-term survivors was conducted by Callen8 of 25 peers in the AIDS-crisis years (Callen 1990). Callen was a high-profile New York activist whose published work has been characterised as

8 Callen died at 38 years of age in 1993 just 10 years after helping to draft the first PLHIV empowerment manifesto The Denver Principles and publishing ‘How to Have Sex in an Epidemic: One Approach’ (Berkowitz and Callen,1983) which was the first formulation of safe sex practices for gay men.

‘part self-help and part wishful thinking’ as he sought to keep hope alive and identity what characterised survivors (France 2016, p. 429). Callen found ‘grit’ was their common characteristic. He concluded ‘these people are all fighters: sceptical, opinionated, incredibly knowledgeable about AIDS, and passionately committed to living. They have worked hard to stay alive. They were all pragmatic optimists.’ (Callen 1990, p. 183). These were all young men facing death well before getting old.

A qualitative study with 63 urban HIV positive people aged over 50 years was conducted in Canada in the late 1990s just as effective treatment for HIV was being rolled out (Siegel et al. 1998; Schrimshaw and Siegel 2003). Even that early in the ART era, signs were showing that PLHIV were moving past clinical concerns to identify a lack of social supports, with gay men identifying the disadvantage of having lost much of their age cohort to AIDS (Siegal et al. 1998).

Emlet (2006) undertook interviews with 25 older PLHIV in the USA, and a series of papers from that rich data confirmed PLHIV faced significant challenges as they aged such as stigma, social isolation and uncertainty (Emlet 2006; Emlet 2006 (b); Emlet 2007; Emlet 2008; Emlet et al. 2011). Emlet concluded that older people ageing with HIV faced a ‘double jeopardy’ of ageism and HIV stigma (Emlet 2006, p. 781), but for gay men this may well be a triple jeopardy particularly in rural and regional areas. He was very conscious of the limitations of one-off interviews to capture the lived experience of ageing and called for longitudinal studies with a life course perspective (Emlet 2006b, Emlet 2017).

Robinson studied a long-running HIV support group of older gay men in Canada and compared the experience of those infected with HIV early in the epidemic with those infected later in life, and found that both groups appreciated the common experience of a community of HIV-positive men (Robinson 2008). Both groups struggled with the changes that HIV had forced on them and had lost sight of what life would have been like without the virus.

Storylines of people ageing with HIV have been identified by Beuthin and colleagues (2014) who interviewed five HIV activists in British Columbia up to five times over 3.5 years. They offered six storylines PLHIV used to make sense of ageing with HIV (Beuthin et al. 2014). They found participants were ‘highly in tune’ with changes in

their body, cautious in making sense of changes that reconceptualise HIV as a chronic illness (rather than a death sentence), having experienced multiple losses were vulnerable to traumatisation with new events, protecting themselves by not disclosing HIV status, and re-evaluating the saliency of a living with HIV identity as they explored a new basis for connections and other identities. They concluded that making more accessible the stories of everyday living with the complexities of HIV was ‘vital to the wellness of those affected’ (Beuthin et al. 2014, p. 9).

A study of 10 older HIV-positive men in London used a biographical narrative approach to explore their relationship to the history of the epidemic and successful ageing, and found many participants adopted a strategy of coping with uncertainty by not thinking about the future or the implications of ageing with HIV (Owen and Catalan 2012). Another London-based study concluded that biomedical advances have not altered the negative ‘social construction of HIV in wider society’ (Rai et al. 2018, p. 1140). This meant the participants adopted a strategy of concealing their status to normalise life with HIV, but this effort to maintain privacy involved ‘significant psychological costs’ (ibid, p. 1139). The participants experiencing problems were relying exclusively on their HIV clinic for wider support given reductions in ancillary support services (ibid, p. 1134). The study examined four ‘generations’ of PLHIV according to when they were diagnosed, but the differences between those who did or did not manage well was not static. Participants across all generations experienced periods of ‘difficulty and uncertainty’, as well as periods when ‘life became easier’ (Rai et al. 2018, p. 1139).

Several qualitative studies on older PLHIV are currently being implemented, including the ongoing work at AIDS Community Research Initiative of America’s (ACRIA) Centre on HIV and Aging in New York City. Another major study by the Terrence Higgins Trust (THT) is funded for three years by the UK National Health Wealth and Happiness Programme to look at lives of and provide social support to older PLHIV. This new phase of THT work builds on the findings of the National Study of Ageing and HIV (50 Plus) which surveyed 410 PLHIV, with more than 40 PLHIV interviewed by openly HIV-positive community researchers (Power et al. 2010). This study highlighted financial concerns, homophobia in the health care system, and mental health as major issues for older PLHIV, though social care and support was anticipated to be a major issue in the future (ibid).

PLHIV have documented their own lived experience throughout the epidemic. The anthropological study carried out by an HIV-positive researcher during the AIDS- crisis years in Sydney was published posthumously (Ariss 1997). It provided participant observer insights into the ways PLHIV empowered themselves including managing an HIV-positive status and the emergence of a new identity, relations with doctors in experimental drug trials and use of alternative therapies, reinventing death, and the role of anger as strategic activism. Reinventing death included examining the role of euthanasia to ‘release the body from medical management and a re-legitimation of sociality at the time of death’ (Ariss 1990, p. 132).

Efforts have been made by PLHIV organisations to document the lived experiences of PLHIV, including a significant collection by NAPWHA for the 20th International AIDS Conference (Rule 2014). Queensland Positive People (QPP) and Queensland AIDS Council (QuAC)9 collaborated in 2013 to support a series of writing workshops that led to 13 short stories by PLHIV. This was in response to the increased rate of new HIV infections in Queensland around about 2010. Story telling was the strategy adopted to challenge complacency about preventing HIV transmission by bringing to life the difficult realities, especially stigma, that PLHIV lived with day to day. In the introduction, the late Rex Pilgram addressed the dilemma this presented for eliminating stigma ‘when prevention efforts attach a sense of horror or fear to HIV as a deterrent’ (QPP PosLit Writers Group 2013, p. 9).

More recently, an American psychologist, Halkitis, who has lived through the epidemic, tackled the story of the AIDS Generation, and directly addressed the ageing of gay men. He likened the process to a rollercoaster, while also noting that ‘being middle aged is a victory after a lifetime of battles [ … ] but the battle scars define who they are, the power they have demonstrated to the world, and the resilience they have embodied [ …]’ (Halkitis 2014, p. 188–9). Halkitis did not shy away from detailing the painful aspects of long-term survival, nor the psychological cost involved for him personally in writing about the epidemic. Kagan has explored

9 Queensland AIDS Council founded in 1984, rebranded Queensland Association for Healthy Communities (QAHC) from 2006–2013, then back to QuAC until the AGM November 2019 when it rebranded to Queensland Council for LGBTI Health (QUAC). Throughout this thesis, the organisation is usually referred to as QuAC as that is what is was known as for most of the study.

how an emphasis on positive imagery to represent PLHIV post-1996 has distorted current and historical realities of queer life by disavowing ‘a consciousness of the negative states and feelings’ (Kagan 2018, p. 12). Odets (2019) has argued that these negative states are rooted in socially constructed shame, a sentiment also identified by Walker (2017) in a paper entitled ‘There’s no pill to help you deal with the guilt and shame’. Shame about being gay, sex, and HIV truncates and damages human potential (Odets 2019).

This social suffering has profound implications for this study. A useful health- orientated literature informs inquiry into ‘the brute facts’ of social suffering in addition to material hardship and embodied pain (Wilkinson 2004, p. 114). While social forces can inflict injury, the exercise of this political, economic and institutional power also shapes the response to suffering (Kleinman et al. 1997). Examples of the way entrenched power resisted partnership with affected communities in the AIDS-crisis years are provided in Chapter 3. Social conditions that produce a ‘vicious spiral’ of intensified disadvantage (Kleinman et al. 1997, p. x) have been characterised as structural violence, which calls for ‘fine-grained and systemic analysis of power and privilege’ (Farmer 2009, p. 25). The suffering produced by the exercise of power often has negative health impacts that are cumulative across the life course, so understanding the cultural and political roots that entrench disadvantage is essential for the pursuit of health equity and justice (Frohlich and Potvin 2008). In the past, Queensland PLHIV developed a ‘culture of care’ to mediate uncertainty and injustice though building social networks and practices of self-care and care of others (Hurley 2002, p. iii).

Neoliberalism has been critiqued as inadequate given its expectation that citizens be held personally responsible for guarding against victimisation, rather than asserting a right to not be victimised (Stringer 2014). Focus on the lived experience provides a way to acknowledge suffering rather than silencing it, and to interrogate the social conditions and contexts that perpetuate suffering rather than expecting those targeted to adjust to living with the intolerable. While examining lived experience, it is important to avoid the ‘victim’ versus ‘agency’ dichotomy that underlines much discussion of individual resilience (Southwick et al. 2014), as a more nuanced analysis is needed for responsive, trauma-informed service innovation and to explore

how collective empowerment strategies underpin individual agency to resist stigma (Stringer 2014).

2.6 Addressing the gaps in knowledge

In the conclusion to this literature review, I outline how this study will address the gaps in relevant literature, and in doing so, extend and enrich the understanding of the issues examined in this chapter. Few other studies have examined the lived experience of PLHIV across time, and none have focused on people living in non- urban environments. The research questions for this PhD research, outlined in Chapter 1, will be addressed in turn below:

1. What are the lived experiences of the physical challenges of ageing with HIV?

The literature highlights the success of ART and more recent breakthroughs in prevention, including evidence that PLHIV with undetectable viral load do not pass on the virus to sexual partners (Anglemyer et al. 2013). This has heralded a biomedical era in the HIV response. Despite the impressive progress that has been made in the clinical management of HIV, PLHIV and their clinicians are still coping with considerable uncertainty, particularly about how ageing will impact living with HIV. However, even with well-treated HIV, there is evidence of persistent immune system dysregulation, and inflammation that complicates ageing (Deeks 2011). Advances in treatment mean viral suppression is now possible for most PLHIV, providing an opportunity to learn from the lived experience of the first generation to get older with HIV.

HIV is also associated with an accumulation of comorbidities ‘with observed prevalence in line with HIV negative individuals 10–15 years older’ (Levett et al. 2014, p. 11; Vance et al. 2011; Guaraldi et al. 2011; Hasse et al. 2011). For the first generation of PLHIV facing ageing, coming to terms with the early onset of multiple comorbidities, including HIV-related neurological decline, frailty due to loss of bone density associated with both HIV treatment and ageing, and mental health issues, HIV is ‘no longer the primary health concern’ (Cahill and Valadez 2013, p. e7). For example, day-to-day-living cognitive decline means a person is drawing on fewer cognitive resources to cope with ageing with HIV and the ability to develop solutions

to problems that arise is impaired. The literature tends to focus on the impact of neurological decline on treatment adherence (Ghidei et al. 2013), but it also presents significant psychosocial challenges (Alford et al. 2019). This thesis explores how participants are dealing with the physical aspects of ageing with HIV, including memory problems.

Although technological advances in clinical management of HIV and comorbidities have been impressive, physical suffering is only one consideration for quality of life outcomes as PLHIV age with HIV. An individualised clinical response is essential, but also inadequate when biomedical domination excludes consideration of the broader social determinants of health (Baum 2015). Even when programmes acknowledge the social determinants of health, there is still a tendency to slip back into narrow interventions consistent with the personal responsibility assumptions of a neoliberalist approach (Hunter et al. 2010).

2. What are the psychosocial complexities for gay men and other MSM ageing with HIV in regional Queensland?

Gay men have been virtually invisible in ageing theory, such that existing theories of ageing may hinder the understanding of ageing with HIV. We are only just beginning to understand their experiences and needs (Fredriksen-Goldsen and Muraco 2010). The social changes across the lifetime of gay men ageing with HIV mean people experienced very different contexts around their sexual identity development and expression, and their HIV journey, which inevitably affect the way they approach ageing. However, despite this progress, a common denominator is growing up primed to expect social rejection, which translates into higher suicide rates than heterosexual peers—a struggle further complicated by HIV and ageing. Many in the first generation to age with HIV have been social activists who will not easily accept going back into the closet as a precondition of accepting services. Vance and colleagues (2010) have called for longitudinal studies to explore the significance of the various stressors and how resilience strategies can be employed to manage getting old with HIV.

While the clinical aspects of the management of ageing with HIV are addressed extensively in the literature, the psychosocial aspects have had far less attention, and there is little understanding of how ageing with HIV is being affected by

psychosocial circumstances including the cumulative effects of the participant journeys as gay men, living with HIV, and now ageing with HIV. The challenge of the current era is to continue to acknowledge the biomedical breakthroughs while not losing sight of the psychosocial and cultural impacts of HIV and the needs of PLHIV (Mazanderani and Paparini 2015). A life course approach is needed to provide a full appreciation of the lived experience of the first generation to get old with HIV (Pachana 2016).

There is much yet to be understood about the individual characteristics, interpersonal relationships and environmental factors of ageing well with HIV, aware that living in regional Queensland may exacerbate the social isolation that results from the ‘double jeopardy’ of ageism and HIV stigma (Emlet 2006a, p. 781), with the additional challenge of homophobia in rural and regional areas. These challenges make it difficult to build social capital, and as identified in one of the few studies of PLHIV in rural areas it is incumbent on physicians as perhaps the only confidant for PLHIV to be aware of support and community resources available locally (Cene et al. 2011). People in regional areas have a limited range of options for accessing services and wider social supports. The difficulties of ageing with HIV remain significant and it is risky to leave ‘people largely on their own to navigate the social, psychological and structural challenges’ (Rai et al. 2018, p. 1139). This thesis will examine those challenges and possible policy and programmatic responses.

3. How has the increasing biomedicalisation of the response to HIV in Queensland changed the policy and service context and impacted ageing with HIV?

Although near normal life expectancy is now possible for newly infected people starting treatment early, it is not yet clear what quality of life will be possible for people now ageing who did not have the benefit of effective treatment for many years after acquiring the virus. The literature on the biomedical aspects of ageing suggests an accentuated ageing process could be occurring, if not accelerated, so that premature ageing and adjustment to impairment is a feature of daily life for many PLHIV (de Francesco et al. 2019).

Qualitative studies to date have revealed the complexity of ageing with HIV, and while many long-term survivors are determinedly positive in outlook and highly

invested in maintaining their health, there are also indications that ageing with HIV is not an easy process for many. HIV Futures has characterised this as ‘doing it tough’; a consistent experience for up to a third of survey participants (Power et al. 2019, p. 9). The suffering involved in ageing with HIV could be obscured by over-optimism about the contribution of effective treatment. As policy and service provision for PLHIV shifts in Queensland in response to the emerging dominance of biomedical ‘solutions’ to HIV, it is critical that the lived experience of this first generation of PLHIV ageing with HIV is made visible and informs the evolving policy environment. To do this it is necessary to examine their experiences in their historical, social and geographically specific contexts across time.

Intersectionality is a useful way to explore and address how multiple identities and personal biographies interact with social systems to create experiences of marginalisation and discrimination (Collins 2015, Cho, Crenshaw and McCall 2013). Crenshaw (1991) began using the term ‘intersectionality’ in the early 1990s to assert that one dimensional analysis erased the experiences of groups whose multiple social identities compounded oppression (Crenshaw 1989, Crenshaw 1991).

Squire (2013) drew on the concept of intersectionality to emphasise that experiences of living with HIV occur ‘at the junction’ of an array of social and cultural identities that have the potential to exacerbate or mitigate the challenges of living with HIV (p. 34). Intersectionality takes account of the ways people can experience inequality or disadvantage associated with their overlapping multiple identities such as race, sexuality and disability (Carbado et al, 2013). An intersectional approach contextualises identities as ‘historically situated, socially constructed and structurally entangled’, making the voices of those experiencing such oppressions indispensable in the process of ‘demarginalizing’ their differences (D’Cruz 2020, p. 159).

While intersectionality provides good explanation of the ageing/physical/psychosocial experiences of LGBTI people, the health equity promotion model indicates the importance of addressing these lived experiences, and also indicates a way to proceed. The Health Equity Promotion Model has been used in the LGBTI context to reconceptualise that ways such inequity produces health disparities across the life course (Fredriksen-Goldsen et al. 2017). Including historical and environmental contexts via a life course approach allows for social justice principles to be applied

and foregrounds social movements that seek to advance the health and wellbeing of LGBTI communities (Fredriksen-Goldsen et al. 2014). PLHIV have a rich history of collective action to raise voices that challenge social and other structural barriers to a healthy life (France 2016). The collective action of LGBTI communities now draws on lessons from the strength of community mobilisation in the AIDS-crisis years (Shiltz 1987, Ariss 1997, Power 2011).

In this thesis, an intersectional approach underpins a determination to bring minority voices to the fore by analysing the interconnections between gay, bisexual, Two Spirits, Indigenous, and PLHIV identities, and the implications for the unique social positioning of long-term survival with HIV in regional and rural Queensland. This is not just an exercise in uncovering inequality, but also of working for social justice (Collins, 2015). Importantly, this approach acknowledges the agency and capacity of individuals for strategic resistance and to bring about social change (Gkiouleka et al. 2018). A key way to gain deep understanding of the ways multiple identities interact with social systems of power, and support strategic resistance and agentic practices, is to draw on personal stories to explore lived experiences in depth across time and in relation to their historical and cultural contexts (Christensen and Jensen 2012, Rowntree et al. 2016, Heard et al. 2019).

Chapter 3 Historical Context of Queensland’s Response to HIV

3.1 Introduction

LGBTI lives, and particularly the lives of gay men ageing with HIV, are best understood in their historical and environmental contexts. A life course approach not only enables a fine-grained and systematic analysis through time, it supports application of social justice principles to advance the health and wellbeing of gay men ageing with HIV (Fredriksen-Goldsen et al. 2014). This chapter uses a life course approach to present Queensland’s historical response to gay men and the HIV epidemic, both as context for understanding the lived experience of the study participants and my own positioning as a researcher who also lived through and was shaped by that history.

The HIV epidemic in Australia has always disproportionately affected gay men. The social and political circumstances of gay men who are ageing with HIV have changed dramatically across their lifetime. This chapter provides a historical context of gay men in Queensland and outlines the social status of gay men prior to HIV, and major social and political developments during the epidemic. This is not to relegate to history the ongoing trauma wrought by AIDS (Odets 2019), but to provide important context for Queensland’s response to HIV. It is essential to understand this context, which impacts how these men are dealing with ageing.

In this chapter, the gay liberation movement that provided the foundation for the community-based response to HIV is described, and the evolution of the epidemic is then presented in four eras covering the early and late AIDS-crisis years, the post- crisis era after the first effective treatment breakthrough, and the current biomedical era from 2010 onwards. My own participation in these historical periods is outlined, and conclusions drawn about how historical context could impact ageing with HIV.

The developments that occurred during the historical eras outlined below provide important context for understanding the lived experience shared by participants in this study. This context helps explain how the cumulative effect of a lifetime of resisting homophobia and AIDS hysteria could wear down the resilience of PLHIV as

they age. The strategies employed by PLHIV and gay men over a lifetime need to be seen as adaptations to often hostile social and political circumstances, with considerable ongoing tensions between activism and self-protection through secrecy. This means it is critically important that service providers are sensitive to historical context, culturally responsive, and aware of the long-term impact of trauma.

These historical developments occur against a backdrop of rising biomedical dominance of public health that obscures the way health outcomes reflect social inequalities (Baum 2015). A more compelling public health approach acknowledges the social determinants of health, such as the broader physical and social environments including structural factors such as socio-economic status and other factors included in an intersectional approach (CSDH 2008; Collins and Bilge 2016). This unavoidably highlights the political nature of health (Marmot and Wilkinson 1999, Polard, Green and Rootman 2000) and the relevance of the health equity promotion model (Fredriksen-Goldsen et al. 2017).

The social determinants approach contrasts sharply with the neoliberal political agenda that emerged in the 1980s. Neoliberalism relies on the free market to organise society (Baum 2015), and by emphasising personal choice, it positions individual suffering as evidence of moral failure. Under the neoliberal approach, unequal access to the social and economic conditions that largely determine health is assumed to be the natural order, but this market drive approach is fundamentally unjust (Baum 2015). The Health Equity Promotion Model enables a reconceptualisation of the ways such inequity produces health disparities across the life course (Fredriksen-Goldsen et al. 2017). The result of inequity is seen most graphically when access to life saving treatment is unaffordable, but just as surely social stigma and exclusion kill the marginalised. With the rise of neoliberal politics, the HIV epidemic has shifted from being viewed as a public crisis that inspired a powerful collective response and development of a culture of care (Power 2011) to individualised health management that is invisible in the public sphere (Kagan 2018).

3.2 The foundations of a community-based response to the AIDS crisis

To understand the context of the Australian, and more particularly the Queensland, response to HIV it is necessary to set the scene by outlining the historical struggles of LGBTI communities to end the moral, medical and legal persecution of

homosexuals (Fitzgerald et al. 2019). From the 1970s, a gay liberation political movement grew in Australia and called for decriminalisation of homosexuality. Despite the earlier existence of activist groups campaigning to improve the status of homosexuals and declare ‘Gay is Good’, the Stonewall riot in 1969 in New York is often cited as the birth of the modern gay liberation movement (Altman 2013). Altman published Homosexual: Oppression and Liberation in 1971, which helped shape the development of gay liberation efforts globally and potential emergence of a global gay culture (Altman 1997). Although deeply influenced by developments overseas after the Stonewall riots, gay organisations in Australia arose in a different specifically Australian context (Thompson 1985), and gay men formed a community of ‘coherence and purpose’ to overcome the burden of shame (Odets 2019, p. 80).

In Queensland, the Campaign Against Moral Persecution (CAMP10) Club opened in 1971 in the Brisbane central business district to provide social and emotional support including volunteer staffed counselling services, but was subject to police raids (Bolen 2014). From the mid-1970s, lesbian and gay student activism increased LGBTI visibility via Campus CAMP at Queensland University, and the Kelvin Grove Gay and Lesbian Group at Kelvin Grove College of Advanced Education (Weir and Fitzgerald 2010–2011). This activism built the social capital and skills for an organised community response from 1983, but just how politically volatile the AIDS response would be emerged in 1984 when four babies died in Queensland after receiving blood transfusions that had not been screened for HIV11 (Power 2011). The organisational capacity the gay community bought to the HIV response has been acknowledged as exceptional in the Australian context as ‘no other community or consumer-based health movement has captured the same level of public and political influence’ (Power 2011, p. 3).

10 While ‘camp’ denotes an ascetic that seeks to challenge through irony, impertinence, audacity and exaggeration (Sontag, 1964), in Australia it was also used in the 1960–1970s as an alternative to ‘homosexual’ before ‘gay’ and later ‘queer’ came into common usage.

11 A test for HIV antibodies did not become available until 1985, so the donor, a gay man in his early 20s who was a regular blood donor described by the Blood Transfusion Service as “a person with a civic conscience”, did not know he had HIV. This did not stop the media portraying him as a murderer, and gay men in general as irresponsible (Power 2011, p. 41).

Jen Power observed that gay men’s response to AIDS was shaped by a long history of ‘legal, religious and medical efforts to control or punish homosexuality’ resulting in a ‘mistrust of authorities’ (Power 2011, p. 4). This was exemplified in Queensland, where the response to HIV was exploited to further State-sponsored homophobia (Moore 2001; Robinson 2010b). Homosexuality was a useful political wedge issue for the conservative Queensland Premier who linked Australian Labor Party moves to decriminalise homosexuality in other States to the emergence of HIV, as seen in the news item (Image 1) below.

Image 1: Gays Depraved Joh Claims: AIDS linked to Labor policy. Source: Daily Sun, 23 November 1984 [from Robinson 2009, p. 6.]

The Bjelke Petersen Government went as far as amending the Queensland Liquor Act to prescribe serving alcohol to ‘sexual perverts or deviants, child molesters’ in what was seen as a way to close down gay bars (Moore 2001, p. 181). In 1984, the Queensland gay and lesbian community was to host the 10th National Conference of Lesbian and Gay Men on the grounds of Queensland University, and the State Government applied pressure to the University to not make space available on campus (Moore 2001). The conference went ahead but disagreement about whether to allow discussion of controversial issues created rifts within the gay community at the point when it needed to come together respond as the epidemic emerged. Handling the controversy also exposed tensions with southern activists who were seen as insensitive to the political constraints LGBTI people faced in Queensland (North 1988).

Adding to the complicated political dynamics was the central role the medical profession historically played in the oppression of homosexuality. Within a decade of homosexuality being declared not an illness by both the Australian and New Zealand College of Psychiatry Federal Council, and the American Psychiatric Association, a new iteration of the medicalisation of homosexuality via AIDS had begun (Kagan 2018). At this point in the history of LGBTI community development, the AIDS epidemic emerged and a political and social backlash threatened to set back the gains that had been made in the progressive realisation of basic human rights and dignity, and so many lives were lost that it hollowed out a whole generation of gay men.

3.3 Historical context and the epidemic

The timeline of the HIV epidemic begins from 1981 with the first official reporting of what would become known as AIDS (US Department of Health and Human Services 2019). The ART breakthrough in late-1996 was a turning point in the epidemic. The years before ART are referred to as the ‘AIDS-crisis years’, and after 1996 is referred to as ‘post-AIDS’ (Dowsett and McInnes 1996; Rofes 1998), or ‘post-crisis’ (Kagan 2018).

In this thesis, the historical context is presented in four main phases. The AIDS-crisis years are divided at 1990 as the year when homosexuality was decriminalised in

Queensland, and decades of government hostile to community involvement in the HIV response ended12. ART became available from 1996. The decade beginning 2010 saw the emergence of new biomedical tools for prevention of HIV transmission (AFAO et al. 2016), and the shift to treating HIV as early as possible after infection. The phases, years and the era designation in this thesis are summarised in Table 1.

Table 1: Phases, years and eras of the HIV epidemic.

PHASE YEARS ERA Early AIDS crisis 1981–1989 1 Late AIDS crisis 1990–1996 2 Post-crisis 1997–2009 3 Biomedical 2010– 4

3.3.1 The early AIDS-crisis era (1981–1989)

In June 1981 the USA’s Centers for Disease Control (CDC) published an article about five young gay men with pneumocystis carinii pneumonia and other infections indicating compromised immunity (Mortality and Morbidity Weekly Report (MMWR) 1981). The CDC used and defined the term AIDS for the first time just over a year later (MMWR 1982). In an early example of the determination of the gay communities to take positive action, two gay men living with AIDS in New York collaborated with their doctor in 1983 to publish How to have sex in an epidemic: one approach, which promoted condom use (Berkowitz and Callen 1983). This sex positive approach became the basis of safe sex campaigns in gay communities around the world (Merson et al. 2008). In the same month, the HIV virus was first identified (Barre-Sinoussi et al. 1983) enabling modes of transmission to be clarified. By this time HIV was already circulating in the Australian gay communities with an estimated 2,500–3,000 new infections a year in the mid-80s (Willett 2014).

12 In editing a collection of reflections mainly by PLHIV on the Australian response to HIV after 30 years, Rule also divided the crisis years at the turn of the decade (Rule 2014). The project was supported by a grant from the Commonwealth Department of Health and characterised by the NAPWHA President at the time as the most comprehensive coverage to date of personal perspectives on the Australian response to HIV.

The political struggles that occurred in the early AIDS crisis era were a contest between traditional biomedical approaches and the new public health (Baum 2008) that had been expressed in WHO’s ‘Health for All by 2000’ campaign and the 1986 Ottawa Charter (Crichton 1990). The new public health works to improve local and national policy by examining the underlying social issues that contribute to health problems, rather than falling into ‘the trap of blaming the victim’ (Ashton and Seymour 1988, p. 21). AIDS was a test of the new public health approach as the gay community sought collaboration with, rather than subordination by, the medical establishment (Altman 1994; Power 2011). This was resisted by the Australian Medical Association (AMA) as de-medicalisation by attempting social solutions to medical problems (Barnett 1989). The affected communities, mainly the organised gay community, insisted on their full involvement in the response, an approach that was ultimately recognised as the Australian model by Jonathan Mann13 and Feacham (1995) in his evaluation of the Australian HIV response (Sendzuik 2003; Poulton et al. 2013; Fitzgerald et al. 2019). Community mobilisation was the key to an effective national response to HIV and even dubbed ‘the invisible cure’ in a direct counter to over-reliance on biomedical quick-fix rather than investing in the most vulnerable communities (Epstein 2007, p. 155, Fitzgerald et al. 2019).

Bill Bowtell, who was adviser to then Federal Health Minister Blewett as the epidemic broke, has testified that ‘the orthodox medical and scientific establishment’ took the position that prevention was not possible and they needed to take control though ‘sanction and isolation and quarantine’ including mandatory testing (Power 2011, p. 104). Their strategy invoked homophobia by questioning the sexuality of the Minister and suggesting that any gay man involved in administering HIV funding had a conflict of interest (Power 2011). Ultimately, Blewett was disinclined to reinforce the power base represented by the AMA, and favoured the new public health approach (Altman 1994; Fitzgerald et al. 2019).

Sendziuk characterised this new public health approach as the mainstream ‘learning to trust’ homosexuals, injectors and sex workers, the already stigmatised groups now

13 Jonathan Mann was the founding Director of the WHO’s Global Program on AIDS who saw respect for human rights as fundamental to an effective response to HIV (Whiteside, 2008).

facing another layer of stigma by being portrayed as vectors of disease (Sendziuk 2003, p. 6). The prospects for development of trust between the gay community and the biomedical establishment were not promising in Queensland. HIV emerged in Australia the same year the WHO removed homosexuality from its list of illnesses and disorders to be treated with electroshocks and other aversion therapy, but this was opposed by the Queensland branch of the AMA (Wilson 2011). Homosexuality was still criminalised, and in 1985 the law was amended so that homosexuals could not enter licenced premises or be served alcohol14 (Moore 2001).

The ‘learning to trust’ played out in a complicated way as Blewett created a Ministerial advisory body known as the National Advisory Committee on AIDS (NACAIDS) but also maintained an AIDS Task Force made up exclusively of biomedical experts. ‘Test and contain’ was their default biomedical mindset even when other approaches were a better fit (Sendziuk 2003, p. 82; North 1988). NACAIDS was chaired by Ita Buttrose15 with representation from affected communities. The NACAIDS commissioned the infamous 1987 Grim Reaper advertisement, which positioned HIV as a mainstream concern rather than a gay plague, partly as a way to deflect the guilty versus innocent victim narratives being promoted by the AIDS Taskforce, the AMA and the media, and to make government funding of the gay and other affected communities’ responses more politically palatable (Sendziuk 2003). However, the government’s prevention efforts did not provide explicit information about transmission or safe sex practices or even show condoms, leaving the gay community to fill the gap in information and to socialise new sexual practices.

Fortunately, the explicit HIV prevention campaigns organised without government funding by the gay community prior to 1987, had already turned the tide of the epidemic. These early campaigns were remarkably successful at changing social

14 The venues continued to operate by paying bribes to police, and the Fitzgerald Enquiry revealed how such laws facilitated the corruption of Queensland police to the highest level, as well as politicians.

15 Buttrose AO, OBE is an Australian journalist and mass circulation women’s magazine editor who worked for both the Packer and Murdoch media empires, and was Australian of the Year in 2013. She was appointed chair of the Australian Broadcasting Corporation in 2019.

and behavior norms in the gay community (Plummer and Irwin 2006). New infections peaked in 1984 then declined as shown in Figure 11.

Figure 11: National HIV incidence in Australia 1980–1993. Year, HIV incidence estimates, and federal funding (AUD$ million). From: Plummer and Irwin 2006, p. 790. A test for HIV antibodies was available from 1985, but utilisation of this technology was complicated by the climate of fear, stigma and discrimination (Poulton et al. 2013, Robinson 2009). Although there was treatment for opportunistic infections it was still another decade before there would be effective treatment for HIV; there were few benefits to knowing your HIV status (Power 2011). However, in Queensland QuAC organised ‘Operation Vampire’ to study blood samples collected via gay venues to obtain a snapshot of the state of the epidemic in Queensland (QuAC 1986, p.1). Operation Vampire and gay community leaders publicly testing were efforts to demonstrate that medical authorities could be trusted despite working for the very Government that maintained a sodomy law carrying a 14-year prison sentence under the Criminal Code (Robinson 2009). Despite the Government’s harassment campaign, behind the scenes senior medical doctors and health bureaucrats were collaborating with the community ‘to monitor the epidemic and provide care.’ (Moore 2001, p. 181).

The transmission of HIV was criminalised and a range of public health protocols enacted in Australia jurisdictions, while sexual- and drug-related pleasure was

marginalised as irrational behaviour in ‘the actuarial calculation of risks and harms’ that took little account of everyday life (Race 2009, p. ix). The politically powerful AMA attracted criticism for the cover of its June 1983 Medical Journal of Australia (see Image 2), which sensationally referenced the Grim Reaper and the black plague, and in an echo of Bjelke-Petersen, positioned homosexuality, and therefore PLHIV, as depraved and to blame for their predicament (Wilson 2011).16

16 Decades later, 52% of participants in the Stigma Indicators Monitoring Project: PLHIV still reported experiencing negative or different treatment by health workers (Caman et al. 2018).

Image 2: Cover of the Medical Journal of Australia, June 1983.

The registration of QuAC was blocked for two years by the State Government until 1986 (Robinson 2009). This was an era of major mobilisation of volunteer palliative care for the dying, while the Bjelke-Petersen Government refused to pass Federal funding on to QuAC. The Sisters of Mercy discretely provided an alternative channel for federal funding, leading then Federal Health Minister Blewett to refer to them as ‘the most cheerful and altruistic of money-launderers.’ (Sendziuk 2003, p. 120). Not only did the Sisters provide office space and houses for emergency accommodation of PLHIV to QuAC, they effectively concealed Federal Government support for the AIDS Council by funneling the funding through their Mater Hospital. The Queensland

Government continued to obstruct HIV prevention efforts including sending police to remove condom vending machines from universities in 1987, as seen in the news report in Image 3.

Image 3: Police tear out uni condom machine. From: The Courier Mail, 1 September 1987.

Ultimately, the belligerent approach of the Bjelke-Petersen government reached breaking point within the government when Mike Ahern became Health Minister in December 1986. Ahern’s determination to take a more constructive approach on HIV split the government and contributed to Ahern replacing Bjelke-Petersen as Premier within a year (Sendziuk 2003). A bi-partisan response to HIV was adopted federally and in other states. This occurred despite HIV being ‘the most political of diseases’ (Altman and Buse 2012, p. 127), connected as it is to stigmatised behaviours (anal sex, injecting drug use, and sex work particularly) of marginalised populations. However, tensions remained between the medical establishment and the gay community perspectives on how to best respond. The partnership approach involving affected communities, government and researchers has been enshrined in every

National HIV/AIDS Strategy in Australia since 1989 but has had inconsistent bipartisan political support in Queensland17. Adam Carr18 is credited with playing a substantial role in educating the gay community in Australia through well-researched articles in the gay press (Robinson 2010b), and in a speech in 1984 summed up the strategic weakness of such marginalisation of gay community organisations:

We are the only people with the power to stop AIDS, and this is our one great strength, our one ace. The doctors cannot stop it, the government cannot stop it, the scientists cannot stop it, except by helping us to stop it. (Carr 2013).

The Federation Government’s national Grim Reaper campaign in 1987 to educate the Australian public has been criticized for contributing to the stigma that PLHIV still encounter today (Menadue 2011). However, PLHIV were finding their voice to counter negative representation and claim their key place in an effective response to the epidemic. At the 3rd National AIDS Conference in 1988, the then Shadow Health Minister Wilson Tuckey make a series of controversial remarks including that ‘in the interest of public health people with HIV should not be afforded any anonymity or freedom’ (Tuckey 1988). PLHIV were so angered they took to the stage during the closing session of the conference to declare very publicly their HIV-positive status and wore badges demanding that in future responses should 'Talk with us, not about us' (Power 2011, p. 131)19, as seen in Image 4. Tuckey was quickly replaced as Shadow Health Minister (Power 2011). In Queensland, QPP was established as a peer support agency for PLHIV in 1988 and this provided an independent PLHIV advocacy voice (Robinson 2009).

17 As recently as 2012 all state government funding was removed from QuAC and Minister Springborg refused to meet with the organisation (Springborg, 2014).

18 Dr Adam Carr is an historian who was one of the founders of the Victorian AIDS Action Committee (later Victorian AIDS Council, now Thorne-Harbour Health). Carr is credited with providing early and trusted alerts and education to the gay community via Outrage magazine as the epidemic emerged (Power 2011).

Image 4: National AIDS Conference, Hobart, 6 August 1988. Source: abc.net.au. 3.3.2 The late AIDS crisis era (1990–1996)

It was a time the epidemic raged [ … ] from the mid-80s the dying had built up slowly and then, around 1990, it went BAM!—slamming into us—death after death after death. We who were infected wondered when it would be out turn to die. Bill O’Loughlin in Rule 2014 (p. 37)20

In December 1989, the Australian Labor Party returned to power in Queensland in the wake of the Fitzgerald Enquiry, which exposed major police and political corruption, ending 23 years of conservative anti-gay government (Bolen 1997).Decriminalisation of homosexuality21 occurred in Queensland in 199022

20 Bill O’Loughlin has lived with HIV since 1982, and is one of the people in Image 4. He was an early staff member of VAC/GMHC, and then an international development consultant. O’Loughlin carried out the review of the Two Spirits programme for Queensland Association for Health Communities (QAHC/QuAC) with Gregory Phillips in November 2011.

21 Such law reform has been endorsed by UNAIDS as fundamental to an effective response to HIV by enabling access to prevention, treatment and care.

22 The age of consent for heterosexual and homosexual acts was not equalised until 2017.

(Moore 2001), signalling a more collaborative approach between the government and LGBTI communities with funding expansion (Robinson 2009). However, frustration grew as volunteers and dedicated health professionals, who were often gay men, assisted the many PLHIV who died throughout the first half of the 1990s (Bradford 2018). These were emotionally volatile times as the epidemic progressed relentlessly (Hurley in Rule 2014).

Some PLHIV channeled their emotions into activism as their primary treatment strategy, encouraged by early impressions that ‘activists live longer’ (Strub 2014, p. 262; Callen 1990, p. 193). In Australia from 1990, this took the form of ACT-UP groups in Melbourne and Sydney based on the USA model (Groves 2014; Ariss 1997). ACT-UP’s methods grew out of the tactics of 1970s gay liberation but with even more creativity and daring (Willett 2014) such as the 1991 D-Day campaign to improve the drug regulation system (Menadue 2003). An aspect of this activism to force changes and save lives was the clandestine involvement and support of people inside bureaucracies who needed external political pressure to progress issues within bureaucracies that increasingly marginalised them (Willett 2014). This sense of marginalisation arose as key activists moved into professional roles in government, academia and non-government organisations (NGOs), and although advocacy remained a core function of AIDS Councils (Cabassi 2004) this was tempered by needing to remain on good terms with the governments providing the bulk of their funding.

By 1991, the Red Ribbon was developed overseas to assist consciousness raising and adapted for the Australian context (Green 1992), but it became clear that concerns of some activists about AZT23 as high dose mono-therapy were well founded. While AZT provided ‘the first proof that inhibition of HIV-1 was possible…the side-effects [were] not to be discounted’ (Broder 2010, p. 2), and those

23 AZT, azidothymidine or zidovudine, a drug in the nucleoside reverse transcriptase inhibitor class, was the first to offer hope that effective treatment would eventually be possible. It is still used in combination with other drugs to stop the reproduction of DNA and reduce the amount of virus in the blood (viral load). It was an abandoned cancer drug and approval for its use to treat HIV was controversially fast tracked when placebo participants in the first trial on humans were dying faster than those taking AZT. That trial was for only 19 weeks, but there was immense pressure to make a treatment available (Broder 2010).

who took part in the trials generally paid a high price (Callen 1990, Poulton et al. 2013). While AZT extended the life of those with advanced disease for weeks or months, for those who were not so advanced the toxicity made them sicker faster, and the virus quickly developed resistance to the drug. Other experimental drugs24 became available from 1991–1992, but any relief was usually temporary. Deaths due to AIDS in Australia peaked in 1994, with 764 people who were mainly gay men who acquired HIV in their 20s or 30s in the 1980s. AIDS diagnoses also peaked that year at 909 then fell off as PLHIV enrolled in clinical trials (ABS 1997). Hiley (1993) estimated that, in Queensland, approximately half of the 780 infections in homosexual/bisexual men diagnosed to the end of 1992 existed before testing began in 1985 (Hiley 1993). In 1992, the point median survival time for people diagnosed with AIDS in Queensland was just 420 days, but a lone long-term survivor had reached 6.84 years since diagnosis (Hiley 1993).

As most people with HIV in Australia died of AIDS-related opportunistic infections up to 1996, very few older people with HIV could tell the story of ageing with HIV (Duffin 2010). At that time, less than 15% of PLHIV in Australia were aged over 50 years (Murray et al. 2010). The Third National HIV/AIDS Strategy stated that there had already been 4,723 deaths following AIDS in Australia (Commonwealth of Australia 1996). This meant the relatively young population of PLHIV, and the LGBTI community in general, were experiencing multiple losses of peers and weakened social support systems, which most of the population face later in life as peers age (Rosenfeld et al. 2012). The community developed rituals to help deal with the grief and loss associated with the HIV-AIDS epidemic including World AIDS Day Services, Candlelight Vigils and the unfolding of the Quilt25. In 1996, 5,000 people marched in the annual International Candlelight Vigil in Brisbane, which was opened by the Brisbane Lord Mayor, and vigils were also held in Cairns and Townsville (Robinson 2009).

24 ddI and ddC.

25 The Australian AIDS Quilt of grave size panels sewn in memory of people who had died was displayed in the Brisbane City Hall in 1991, and the Queensland panels are now stored in Sydney.

UNAIDS was established in 1996 to provide global leadership to the response, and the ART breakthrough towards the end of that year began a period of optimism, but also much uncertainty and hesitation as a major reorientation of HIV services away from care of the dying evolved.

3.3.3 The post-crisis era (1997–2009)

The nature of the HIV-positive community changed with less interest in advocating for such issues as voluntary euthanasia, and more interest in dealing with this, perhaps now manageable, but highly problematic infection. (Rule 2014, p. 61).

From 1996 to the rise of the current bio-medical era, the community moved into post- crisis mode, which opened a breathing space for a broader health and wellbeing agenda for LGBTI and PLHIV communities to emerge. After years of PLHIV participating in experimental drug trials that risked long-term damage to their health (as well as offering the possibility of survival), it was announced at the 1996 Vancouver AIDS Conference that combining three drugs as ART suppressed the virus (Gulick et al. 1997; Lange and Ananworanich 2014). As ART was rolled out, the number of AIDS-related deaths dropped dramatically but it was not known how durable the treatment would be given the previous terrible experience of AZT monotherapy (Brashers et al. 1999).

Previous treatment efforts had seen hopes ‘cruelly dashed’ over the previous decade

(Russell26 in Rule 2014, p. 62) so there was initial caution. Brotherton27 observed that the chaotic uncertainty in the LGBTI communities was a mixture of ‘disbelief, cynicism, elation and even fear’ as hope of a ‘way back into life’ emerged (Brotherton in Rule 2014, p. 76–77). In what Hurley called ‘improvised optimism’ (Hurley, 1997,

26 Associate Professor Darren Russell is a HIV/Sexual Health physician in Cairns and was Chair of the HIV Foundation Queensland, and a past President of AFAO.

27 Brotherton was President of NAPWHA when the ART breakthrough was announced in 1996 at the Vancouver AIDS Conference. He later moved to England to work for the International HIV/AIDS Alliance on human rights and community strengthening and died in 2015 after living with HIV more than 30 years.

p. 8–9), there was euphoria as treatment restored health (Scott and Constantine 1999), alongside the uncertainty about the durability of treatment requiring lifelong adherence. Vance and Robinson (2004) drew a parallel with the experience of cancer patients experiencing remission, who, like Damocles28, lived with the peril that death and disability could befall them at any moment, taxing even the hardiest coping strategies. Treatment was not working for everyone so there were still deaths, particularly in marginalised groups (Dray-Spira et al. 2007). The post-AIDS perspective was also criticised for excluding the lived experience of Indigenous men who felt AIDS Councils and others did not take into account the limited impact of treatment on their economic, social and health circumstances (Lawrence, 1999).

Resistance to the drugs continued to develop over time and regimens needed to be altered to stay ahead of the virus as it mutated, so there was a risk that replacement treatment options would become exhausted (Lange and Ananworanich 2014). There was debate about whether the best strategy was to delay treatment for as long as possible, or to ‘Hit Hard, Hit Early’ with immediate treatment and hope ongoing research would provide fresh regimens as needed (Rule 2014, p. 80). Between 2000 and 2012 at least one new drug became available in Australia each year to construct replacement regimes as resistance developed to older drugs or side-effects of particular drugs became intolerable (Watts in Rule 2014). Each of these drug combinations was associated with a range of side-effects, and this was complicated further by interactions with drugs treating comorbidities.

Despite the uncertainty of living with HIV, the worst fears were not realised, and HIV began to be characterised as a chronic manageable condition and life expectancy began to climb (Murray et al. 2009). However, as North Queensland long-term survivor Declan Jones observed, ‘HIV is a chronic illness and with any such illness life is hard and people still die’ (in QPP PosLit Writers’ Group29 2013, p. 14). For

28 The Sword of Damocles is an ancient Greek parable recounted by Ciscero (Tusculan Dispuations (trans), Livius.org, V. 61). In the story Damocles sits on a throne but has a lethal sword over him hanging by a single horsehair.

29 Positive…is that Good? is a collection of 13 stories by Queensland men living with HIV produced as a joint initiative of QPP and QAHC/QuAC in 2013. The writer’s groups to produce the stories were tutored by Sally Golding in Cairns and Benjamin Law in Brisbane.

government, the shift from crisis mode to manageable health problem also offered the opportunity to allocate attention and resources elsewhere (Willett 2014), facilitated by the neoliberal emphasis on self-management of health conditions (Kagan 2018). With PLHIV surviving and needing to manage their HIV as a chronic condition, and despite community protest, the Queensland Labor Government decided to embark on the first major re-configuration of the model of care since the beginning of the epidemic. The government by defunded the volunteer gay community-based care approach from 2004, and replaced it with a professionalised service via the Positive Directions (PD) programme run by Anglicare.

As the need for palliative and end-of-life care declined for PLHIV and service providers began to focus on what support was needed to live well with HIV, PLHIV organisations expanded health promotion and education programmes (Flanagan in Rule 2014, p. 101). Until the treatment breakthrough in 1996, little attention had been paid to the experiences of older PLHIV and how these differed from those of younger PLHIV (Siegel et al. 1998). Emlet (1993) had identified that older adults with HIV were five times less likely to make use of the support of volunteer ‘buddies’, probably due to a combination of fear of disclosure and feeling the services were designed for younger people. A decade later, he recommended longitudinal studies on social networks as life expectancy increased, given limited knowledge had accumulated about the broad range of relevant subjects as this first generation of long-term survivors entered the unchartered territory of middle and old age (Emlet 2006).

This era opened up the possibility that HIV was not necessarily the primary focus of daily life for PLHIV; what prominent Australian activist Ross Duffin characterised as hoping he could live ‘beside rather than within’ HIV, but he ultimately concluded that given the emerging information about HIV and ageing there would be ‘no escape’ for his generation and HIV would continue to occupy the foreground in their lives (Duffin 2010, p. 17).

3.3.4 The biomedical era (2010 onwards)30

30 This thesis draws on data gathered across the years 2013–14 and 2015–16 as events in this era unfolded, and so some detail of events during these years is provided.

With all these recent advances in HIV treatment and research into Treatment as Prevention, the balance of power has shifted back onto the medical profession once again. Simon O’Connor, Executive Officer, QPP in QPP Alive December 2015 (p. 5).

HIV-related stigma and discrimination builds on existing social stigma around sexuality, gender, class and race and remains one of the most poorly understood aspects of the HIV response; this is despite the fact it is clearly a barrier to effective prevention, treatment and care (Parker et al. 2002). In this era, hopes have been raised that the stigma and discrimination faced by PLHIV will decrease as strong evidence about the implications of undetectable viral load and new biomedical prevention tools become well understood in the gay community and beyond31 (ASHM, 2017). As the late Rex Pilgrim stated ‘stigma […] is the new frontier’ (in QPP PosLit Writers Group 2013, p. 9). However, the Queensland Government has not taken the opportunity to use this evidence to update the laws that currently leave it to the courts to determine if undetectable viral load is an adequate defense against a charge of recklessly putting another person at risk of contracting HIV32 (Woodroffe et al. 2018). The 2018 UNAIDS backed Expert Consensus Statement concluded that evidence about the changed profile of HIV-related risks and harms would be ‘instrumental to reduce stigma and discrimination and to avoid miscarriages of justice’ (Barre-Sinoussi et al. 2018, p. 8).

Based on the results of the NA-ACCORD study (Kitahata et al. 2009), guidelines started recommending commencing ART earlier (ASHM, 2013). The 2011 announcement of early results of the HPTN052 Study had confirmed earlier

31 This theme was taken up by PLHIV and researchers in the SBS Insight programme ‘HIV Positive’ broadcast first on 2 April 2019.

32 Queensland law that criminalises transmission shifts responsibility for preventing transmission to PLHIV, rather than framing prevention as a shared responsibility. Under the Public Health Act it is an offense to put someone else at risk of contracting HIV. Whether using a condom, or having an undetectable viral load, is a defense against a charge of acting recklessly has not been tested in a Queensland court (HIV Transmission and the Law, QAHC and QPP’s Position, 2013).

observations33 that effective HIV treatment of PLHIV prevented onwards transmission of HIV to HIV-negative heterosexual partners (Cohen et al. 2011) providing ‘a game changing’ synergy between treatment and prevention (Brown et al. 2014). In 2010, the iPrEX study also demonstrated that pre-exposure prophylaxis (PrEP) prevented HIV negative gay men from acquiring HIV (Grant et al. 2010). Although these results were well known34, PrEP was not officially taken up in Queensland until 2016 despite interest among men engaging in higher risk sexual activity (Holt et al. 2017). Campaigns to encourage testing were stepped up, including utilisation of new rapid testing technology that gave a result in minutes. From 2018, the cost of PrEP was subsidised by the Federal Government through the Pharmaceutical Benefits Scheme (ASHM 2018).

In treatment guidelines, PLHIV aged over 50 years are a special category, as the immunologic response of older people may be reduced and there is an increased risk of non-AIDS related complications (UNAIDS 2013). The natural decline in the immune system with age strengthens the case for beginning treatment above 500 cells/µL (ASHM 2013), to avoid untreated HIV further weakening the immune system already being compromised by ageing. NAPWHA ran campaigns to bring about a cultural shift in attitudes to treatment among PLHIV by encouraging them to ‘start the conversation today’ with their clinician about commencing treatment (HIV Australia 2012, p. 48). NAPWHA was careful to maintain a human rights approach so that the potential public health benefit of reduced community viral load was positioned as a secondary consideration to the wellbeing of the individual living with HIV (Slavin and Ogier 2011).

This era has also seen the second major restructuring of HIV-related care models in Queensland, and another period of marginalisation of the organised gay community in the response (Howard and Porter 2012; Reeders 2012). The election campaign that led to a change of State Government in 2012 utilised marriage equality and civil

33 In 2008 the Swiss National AIDS Commission issued a controversial statement (known as the Swiss Statement) for doctors in that country about the safety of HIV treatment to reduce transmission, which set off a global debate about risk reduction versus risk elimination paradigms in prevention.

34 Time magazine declared it the most significant medical breakthrough of 2010 (Park 2010).

partnership recognition for LGBTI people as a political wedge. As well as downgrading State recognition of civil partnerships to just registration without an official ceremony, the new Government moved quickly to change the direction of Queensland’s HIV response, including completely defunding QuAC. HIV prevention was orientated away from gay men to the broader population and an advertisement that recalled the Grim Reaper campaign appeared on television. The UNAIDS 90-90- 90 treatment targets were agreed at this time and incorporated into the Queensland response (UNAIDS 2014b). Implementation was largely modelled on the British Columbia approach, which entrenched an exclusive focus on biomedical tools.

In November 2012, QuAC opened the Testing Point clinic staffed by volunteer doctors, nurses and peers, but in March 2013 the strategy to drive up testing rates was complicated by funding cuts to the Health Department’s central business district based sexual health service and AIDS Medical Unit. While the HIV services were partly restored after protests, the expectation that sexual health instead be dealt with by GPs utilising Medicare was not accompanied by effective change management, workforce preparation, or a strategy to maintain access for people ineligible for Medicare, despite those strategic risks being identified by the Independent Review of HIV Services the Minister had commissioned (Deloitte 2013).

With no State funding from mid-2012, QuAC fell back on its financial reserves35 to maintain a small staff and offices in Brisbane and Cairns, and provided clinical services using volunteer clinicians and Medicare rebates. In late 2013, the Health Minister formed a quasi-Government body, the HIV Foundation Queensland36, to lead the response to HIV. The Minister refused to meet with QuAC (Springborg 2014). Then, PD closed after 10 years of operation, leaving long-term survivors without those services.

35 Freed up by the closure of the Sunshine Coast office and sale of the building purchased from the bequest of a local person who died of AIDS-related complications.

36 The HIV Foundation Queensland applied for but was not admitted to membership of AFAO as it was not a community-based organisation since its Board was appointed by the Minister along with the Boards of the other 12 Hospital Foundations in Queensland.

To further implement restructuring of the HIV sector, Queensland Health embarked on a competitive tending process in 2014. A consortium of organisations, including QuAC, was formed to bid but then under political pressure QuAC had to be excluded. The remaining QPP-led consortium won the bid but, with less funding offered, it concluded that the plan was ‘unviable’ and requested that it ‘be scrapped’ (QPP 2015, p. 4). The Health Department returned to the practice of negotiating with and contracting individual agencies. The new QPP contract included no funding to support long-term survivors unless treatment adherence was at risk. In August, QPP in partnership with the HIV Foundation, established a RAPID testing site utilising rapid HIV testing technology (Mutch et al. 2017).

In early 2015, the Queensland Government changed again and the new Health Minister recognised ‘a long history of deep community engagement’ to justify restoring some funding to QuAC (Alexander 2015, paragraph 13). Meanwhile, changes on the biomedical front continued with the Strategic Timing of Anti- Retroviral Treatment (START) study confirming the benefits to PLHIV of starting treatment not just early, but as soon as possible after diagnosis (The INSIGHT START Study Group 2015).

In 2016, the Queensland Government announced it would fund a trial to provide daily dosing of PrEP at no charge to up to 2,000 people at risk of HIV transmission. This involved all participants having a rapid HIV test and confirmatory blood tests and swabs for sexually transmitted infections (QuAC 2016). The trial was a way to speed up access while the process was undertaken to add a PrEP drug to the Australian Pharmaceutical Benefits Scheme so it could be prescribed by any doctor. The trial was ready to commence by the end of the year, with QuAC an equal partner in the trial. In mid-1996 QPP reached a parallel agreement with Queensland Health to implement a new one-on-one Peer Navigator Model to support newly diagnosed PLHIV one-on-one to adjust and commence ART. The psychosocial needs of long- term survivors were still not a priority and no funding was provided for their needs unless adherence to treatment was at risk, completing the move to almost complete reliance on biomedical tools.

In 2017, the HIV Foundation Queensland closed just as the community led campaigning around Undetectable = Untransmissible (U = U) gained traction

(ASHM, 2017). In another example of how this field continuously changes, people were showing interest in the possibility of intermittent PrEP dosing around peaks of sexual activity rather than daily dosing (AFAO, 2019). Lack of Queensland Government funding for support services for HIV long-term survivors as they age prompted QPP to become accredited to access funding via the Commonwealth Aged Care and NDIS sectors, but this is complex process that has not yet produced any services (QPP 2018). QuAC runs a small Commonwealth-funded Community Visitors Scheme in South East Queensland to match volunteers with isolated LGBTI elders, including in residential care settings (QuAC 2018).

Elements of the AIDS-crisis phase of the epidemic, which can be characterised as moral panic fuelling blame and stigma, still interact with the present and even became foregrounded on occasions. That panic is embedded in outmoded laws, social attitudes, and the minds of those who cannot or refuse to forget the past. An ambivalent attitude persists for some people about the toxicity of HIV treatments, despite the vast improvement in their effectiveness and tolerability since the scarring early drug trials that probably shortened the lives of many PLHIV and left others with disabilities.

3.4 Bearing Witness: My Story

My story is a personal perspective on the historical context that the participants in the study have lived through. That context has shaped me, just as it has shaped them. This background informs my interest in the lived experiences of PLHIV who are gay men and other MSM in regional Queensland, and the ageing processes we face. During the course of this study, I officially became a senior myself, and participation in the QuAC Ageing in Diversity Action Groups has enabled me to become familiar with and contribute to advocacy work in the Queensland and National LGBTI Ageing space (for example, see the list of conference presentations given during the course of this study).

Participants generously entrusted their lived experience to me as a researcher. That privilege should be earned. The sensitivities involved mean that, as a researcher, it is incumbent on me to demonstrate the necessary cultural literacies, and continue to earn the privilege of exploring the diverse meanings of their lived experiences. The

hope of participants that this research will help improve the circumstances of PLHIV as they age in regional Queensland and beyond provides a focus and significant motivation, but is also a demanding challenge. I do not seek to create an illusion of objectivity and authority by remaining invisible in the research process, and to facilitate transparency my story is outlined below (Pratt et al. 2020; Gair 2012). These historical events have shaped my approach and analysis during this study. The participants were either my peers, or the older generation that mentored my coming out process in my teens and provided role models for the formation of my gay identity.

This thesis seeks to amplify the voices of gay men and other MSM about their lived experience as they age with HIV, while respecting the PLHIV activist call for ‘nothing about us without us’. This cannot be done reliably without engaging in the emotional work that is part and parcel of the lived experiences of identities that are marginalised, even as the grounds of identity are shifting.

3.4.1 Foundations

I grew up in rural Queensland. In my early childhood years, my family travelled from property to property with a caravan as my father constructed dams and roads in the outback. We later settled in the Scenic Rim near the NSW border as share farmers37. These were dairy farms where we also kept pigs, chickens and some beef cattle, and grew corn, pumpkins, potatoes, and made hay while the sun shined. I worked four to five hours on the farm each day, and the commute for school took three hours, but I got Sundays off to do my homework. When I was 15 years old, we moved to Ipswich for a very different lifestyle, and within months I met my first boyfriend. In my 50s I chose to move back to a farm in regional Queensland with my long-term partner, where we are the ‘only gays in the village’38, and that has been my base throughout this research.

37A tenant farmer contributes an agreed share of the expenses of running the property and receives an agreed share of the profits from the owner.

38 An expression associated with Daffyd Thomas, a character portrayed by Matt Lucas in the BBC comedy series Little Britain.

Image 5: Student identity card: Bernard Gardiner, 1975. I gained a scholarship in 1974 for teacher training but the Bjelke-Petersen state government was targeting homosexuals to exclude us from the teaching profession. This experience was one of many that connected me with participants in the study, as one had attended teacher’s college in the early 1970s but was refused graduation when outed by another student. While at teacher’s college I joined the Kelvin Grove Lesbian and Gay Group. I came out on campus and was well supported by the mature age students who started the group including the mild-mannered Greg Weir who was denied a teaching post. Despite the then Minister for Education Val Bird saying in Parliament that ‘student teachers who participated in homosexual or lesbian groups should not assume they would be employed by the Education Department on graduation’39, I was posted to a preschool; however, it was clear I needed to leave Queensland after one year to continue my teaching career. I moved to Melbourne with the partner I met during final year teacher training. The Kelvin Grove campus is now part of Queensland University of Technology and the LGBTI student common room is known as the ‘Greg Weir Queer Space’.

39The Courier Mail, 30 September 1976.

As a gay liberationist in the 1970s, I found the attempt to exclude gay men and lesbians from the teaching profession was further confirmation of the validity of the rallying slogan of second wave feminism that ‘the personal is the political’. I relocated to Victoria and had a successful career demonstrating how early childhood education can be integrated into long-day child care, and trained many childcare workers. That career was nearly ended in 1978 when I participated in one of the protest marches in Sydney that led to the Gay and Lesbian Mardi Gras, but I evaded arrest and outing to my employer. Well before AIDS broke, I became interested in personal development and after attending the first Elizabeth Kubler-Ross Death and Dying five-day retreat workshop in 1978 in Brisbane, I joined a therapy group in Melbourne for the next decade, all of which held me in good stead for the emotionally challenging times ahead. When AIDS emerged, and HIV was discovered, the personal and political also became the professional.

3.4.2 Era 1

I became involved in the HIV response as a volunteer, after at first hoping reports of a ‘gay plague’ were just too convenient for the homophobes to possibly be true. That short-lived denial was not uncommon at the time, with high profile gay elders, like Quentin Crisp, dismissing the threat but later donating most of his money to AIDS charities. While working as an Early Childhood Adviser for the Victorian Government, I served two terms as Vice-President of Gay Men’s Health Centre (GMHC) from 1985, and also as Vice-President of the Victorian AIDS Council (VAC) from the establishment of a Joint Advisory Committee of the two Boards. Hardly a day went by without me dropping into the VAC/GMHC, while I also undertook post-graduate studies in health education. Although I helped train home-care support volunteers in emotional awareness, I never went on a care team myself to provide palliative care, preferring to devote my efforts to prevention.

I visited San Francisco and New York in 1984 and again in 1988 and witnessed the devastation occurring in the gay communities at that time, a portent of what was to come in Australia. In 1988, I stayed with Tom O’Connor in San Francisco. He was a gay Vietnam War veteran and long-term survivor who wrote the book Living with AIDS: Reaching Out (O’Connor and Gonzalez-Nunez 1987), which collected together information on the complementary therapies and other strategies PLHIV

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were using to try to extend life as Western medicine offered basically palliative and end-of-life care. He ate tablespoons of chopped raw garlic at breakfast time, and we went to macrobiotic lunch groups for PLHIV where the discussion was of psychoneuroimmunology, ‘the emerging branch of medicine that studies the relationship between mind, brain, and disease… steadily confirming... that the mind does influence health and disease’ (O’Connor and Gonzalez-Nunez 1987, p. 34).

People took their hope where they could find it, as business boomed for New Age gurus like the Christian Scientist Louise L. Hay who advocated positive thinking affirmations to ‘heal your life’ (Hay 1984). She promised ‘if we are willing to do the mental work, almost anything can be healed’ (ibid, p. 234), as she encouraged gay men to attend her Hay Ride group meetings in their pyjamas and to bring a teddy bear, a rather obvious infantilising that contrasted sharply with the rising anger in the community about Government inaction. She claimed that the cause of AIDS was ‘Denial of the self. Sexual guilt. A strong belief in not being good enough’ (ibid, p. 151). Few gay men would not have been subject to that script of internalised homophobia and shame in childhood and adolescence.

At O’Connor’s shared gay household in San Francisco in 1988 volunteers delivered food to the guy who was dying in a bedroom upstairs. Whole apartments of belongings were being emptied onto the footpath as tenants died and there was no one to take care of their libraries, records, clothes and furniture. The discarded libraries were symbolic of the knowledge, creativity and culture being lost as my generation was hollowed out. In 1984, I was too frightened to have sex with anyone, but by 1988 I did with a man I knew to be HIV+. Community meetings were highly emotional as people were overloaded with grief and anger.

In New York, I went to the ACT-UP exhibition and hung out for a week with a volunteer I met there, and his friend. Both were in their 20s, beautiful, HIV positive and terrified. They were not partners, but they clung to each other as if in a storm and had vowed not to have sex with anyone for fear of passing on the virus. I almost fled rather than knock on the door of a friend I had made four years earlier, fearful of learning that he and his Australian partner would not be alive.

In a rare reprieve for those times, back in Australia none of my chosen family got sick. I threw myself into HIV prevention work and developed an interest in wellness.

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As a volunteer, I was introduced to the Ottawa Charter as we used it to guide our work. We were further inspired by Illona Kickbush when she visited Australia in 1988 for the 2nd International Conference on Health Promotion. I was still surprised by just how effective our early HIV prevention efforts were, and it is with pride that I reflect on the conclusions drawn by (now Professor) David Plummer, the first President of Gay Men’s Community Health Centre, about that work (Plummer and Irwin 2006). He concluded the ‘during the mid-1980s Australia experienced a remarkable decline in HIV incidence that can rightly be consider a public health milestone of global importance [ … ] ahead of initiatives undertaken at the national level’ (p. 787). In other words, our unfunded grassroots work turned the trajectory of the epidemic, contained the epidemic to mainly gay men, and saved thousands of lives. I also recall learning how to use a condom, the first time I had sex with a person I knew to be HIV positive, and the process of overcoming fear to get comfortable with the efficacy of safe sex.

HIV antibody testing had been discouraged by VAC/GMHC while no treatment was available and discrimination was rife. Most people did not know their status; there was a sense of all being ‘in the same boat’, and holding off on testing was an expression of solidarity. I recall the Sunday afternoon I could take the uncertainty about my status no longer and walked through the gates of Fairfield Hospital to ask for a test. As unlikely as it seems, (later Professor) Suzanne Crowe40 was on duty and immediately willing to do the necessary pre-test counselling and take my blood, no doubt ready to recruit me into the ongoing research at Fairfield Hospital/Burnet Institute if I tested positive. A couple of anxious weeks later I learned I had tested negative; but knowing my status did not lessen my commitment to doing all I could for the survival of my community. I know at least two partners with whom I had unprotected sex died of AIDS-related complications within a few years, so I could have tested positive. For most of Era 1 and Era 2 I reluctantly remained single.

40Professor Crowe AM was Director, Healthy Ageing Programme, Burnet Institute, 2017–18.

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3.4.3 Era 2

HIV took over my professional life. As issues arose for clients of the Community Services Victoria, case managers rang me for assistance as they knew I was Vice- President of VAC/GMHC. I was called interstate by Community Child Care NSW to assist them to develop a booklet on AIDS for childcare centres and kindergartens after HIV+ five-year-old Eve van Grafhorst and her family were forced to flee Australia and resettle in the more accepting New Zealand. All this led me into a three-year policy and education project within the Department to raise awareness and practice standards around HIV, which included piloting innovative peer- education work in juvenile prisons. HIV functioned as a lightning rod for issues exposing weaknesses in existing systems and practice, and so was an excellent tool for improving all practice. The wrap-up of the three-year project also gave me valuable experience in the mainstreaming of HIV responses.

Image 6: Bernard Gardiner launching ++-=1 campaign with the AFAO Gay Education Strategies Project, 1996. Photo: WSO, Issue 111.

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I served three years as General Manager of VAC/GMHC during the period when many people were dying, and then as the treatment breakthrough occurred from 1996, which required a major reorientation of the organisation’s work. These were intensely emotional and politically volatile years and afterwards I needed a period of part-time work to recover from near burnout.

3.4.4 Era 3

I took on 12 years of international HIV work, which often felt like being stuck in a pre- 1996 groundhog day as people were still dying from lack of treatment access, and PLHIV and key population groups were not involved or empowered. This work was supported by my current partner, whom I met soon after moving to Thailand. This extended period of development work enabled me to see the long-term impact of my efforts, and the cycles in capacity building work. For five years, my focus was at the regional level in East and South East Asia as I managed HIV programmes throughout the Mekong Sub-region. I served on the Joint UN Regional Mobility and HIV Taskforce, and was the International Federation of Red Cross and Red Crescent Societies (IFRC) spokesperson on HIV for the Asia-Pacific Region. The Durban AIDS Conference in 2000 exposed me to the global ramifications of the intersections of HIV and the social justice issues. This further reinforced my appreciation of the value of PLHIV as experts by experience41 and change agents as I moved in to work at the global level (Image 7).

41 A Clinical Professor of Epidemiology, University of California, and former Chief of the Surveillance, Forecasting, and Impact Assessment of the Global Programme on AIDS, WHO, dismissed this as activists masquerading as public health experts and an inevitable clash between epidemiology and political correctness (Chin 2007).

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Image 7: Article in Melbourne Community Voice upon appointment to IFRC. MCV, 17 May 2002.

Seven years of work at the global level started with the UN General Assembly Special Session on HIV in 2001, where I organised the largest civil society side event, which proved a partnership between the International Federation of Red Cross and Red Crescent Societies (IFRC) and the Global Network of PLHIV (GNP+) was possible (Image 8).

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Image 8: Civil Society Side Event at UNGASS 2001, New York. PLHIV speakers from Red Cross and GNP+ from Uganda, USA, Zimbabwe, Argentina, Singapore, Thailand and Jamaica with Kofi Annan, IFRC President, and Peter Piot. From: Reducing household vulnerability to HIV and AIDS and other infectious diseases, 2002–2005, IFRC, p. 35. The IFRC partnership with GNP+ described in a UNAIDS Best Practice publication (Knight 2003) makes clear it had a major impact on the way IFRC conceptualised its work, summed up in the graphic of the programme model that placed PLHIV at the centre (Image 9) of what became a AUS$100 million per year programme.

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Image 9: IFRC HIV Global Programme Model. From: Reducing household vulnerability to HIV and AIDS and Tuberculosis, IFRC Update 2003, p. 11.

As well as becoming the UNAIDS collaborating centre on HIV stigma reduction in partnership with GNP+, my programme hosted the NGO Code of Good Practice for NGOs responding to HIV project. For the IFRC, I addressed the World Health Assembly and the UNAIDS Programme Co-ordination Board; and was adviser to two Alternate Board members of the Global Fund to Fight AIDS, TB and Malaria, as well as the IFRC General Assembly and Board meetings, and many regional forums as the IFRC’s most senior HIV expert. I organised a network of PLHIV within the global Red Cross movement. Members of that group are seen in Image 10 in red t-shirts marching with the IFRC Vice-President to mark the International Day Against Homophobia in Mexico City in 200842, where those members participated in the

42 At the following IDAHO Rally the Vice-President also delivered a speech I drafted, which was the first ever IFRC official statement against homophobia.

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Living 2008 Conference, for which I served on the organising committee (see Image 11).

Image 10: RCRC+ members in red shirts marching with IFRC Vice President, IDAHO Rally 2008, Mexico City (Gardiner in black cap far right 2nd row). Photo: Chris Black, IFRC.

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Image 11: Opening ceremony of Living 2008, Mexico City. Bernard Gardiner (left) organising committee member and IFRC representative, with Dr Kevin Moody, CEO, GNP+. Photo: Rodrigo Pascal.

3.4.5 Era 4

In this era, I worked for Queensland Association for Health Communities (QAHC/QuAC) as Clinical Liaison Co-ordinator, which enabled me to work on PEP and the emerging community driven experimentation with PrEP, the links between community strengthening and LGBTI health, the education of GPs and Practice Nurses, and the setup of the Testing Point Clinic run entirely by volunteers, until the funding cuts implemented by the newly elected Newman Government in 2011 eliminated the position. I also completed a Masters of Health Promotion, which included a placement at the Cairns Sexual Health Centre as media co-ordinator for the 1st National Transgender and Sistergirl Conference, and another to undertake evaluation of a 10-country Red Cross three-year HIV programme in Sub-Saharan Africa.

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In 2015, as the interviews for this thesis were being completed, I felt that the QuAC needed to strengthen relationships with other LGBTI and HIV organisations in Queensland, and broaden its scope beyond HIV prevention for white gay men. I was elected to the Board at the end of 2015 as the Central Queensland member. In 2017–18, I worked on the National Suicide Prevention Trial with Brisbane North PHN, managing the co-design and commissioning of suicide prevention initiatives with Aboriginal and Torres Strait Islanders and LGBTI communities, which was an opportunity to facilitate collaboration between organisations. I also served as Vice President of QuAC in 2018 during a period when the organisation changed CEO and developed a new strategic direction with more focus on regional and rural areas. I continue to serve on the QuAC Board, and on the committee of the HIV Emergency Treatment Fund administered by QPP, which is a constant reminder of the difficult circumstances some PLHIV face.

3.5 Conclusion

This chapter has detailed the circumstances of four historical eras of the HIV epidemic in Queensland, and where relevant Australia, to draw out what has shaped the life course of PLHIV now ageing with HIV. That life course has also been shaped by their social positioning as gay men and MSM. The response to a disease has rarely been so political, involving as it does human rights, stigma, and the mobilisation of marginalised populations, all of which became known as ‘AIDS exceptionalism’ (Altman and Buse 2012, p. 127) given the way it was handled as both an emergency and a way to create effective partnerships between key stakeholders, and innovate (Squire 2013).

The trauma that gay men and ageing PLHIV have experienced across their life course, and especially during the AIDS-crisis years, and their response to this complexity provides valuable context for understanding their ageing processes. Service providers in the aged care, disability, mental health and other sectors face a major challenge of demonstrating to ageing gay PLHIV that they can be trusted to first do no harm, and beyond that contribute positively to the lives of PLHIV ageing in rural and regional areas. The interaction between HIV, ageing, and the historical marginalisation of LGBTI communities and hysteria around HIV creates a highly

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complex situation that has left many long-term survivors primed for rejection (Meyer 2019b).

Given Queensland Health adopted an approach of withdrawing funding support for the psychosocial challenges faced by HIV long-term survivors, including mobilisation of resilience through PLHIV community strengthening, PLHIV in regional Queensland face ageing with significantly less support than PLHIV in urban areas and in states with larger populations of PLHIV. Despite all this, older HIV+ gay men are survivors. Their survival owes much to their courage and success in resisting and creatively adapting to oppression, illness, disability, stigma and discrimination, all of which suggests they will strive to age on their own terms.

My personal experiences position me to be empathetic towards the participants, explore the depth of experiences even when these contradict the dominant narrative and are uncomfortable, and strive to translate such experiences into knowledge that will improve the lives of PLHIV as they age. My story provides a personal perspective on the historical events outlined in this chapter, as well as the emotional labour I have invested in response to HIV and gay politics, and in this research process. Reflexivity is integral to qualitative research methods, requiring self-scrutiny and transparency about what the researcher brings to the process. Like the participants in this study, I have been part of the community hardest hit by the HIV epidemic in Australia. Unlike many of my peers I survived to tell the story of those decades and listen to the experiences of PLHIV in the fourth decade of this ever- changing epidemic.

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Chapter 4 Methods

4.1 Introduction

This chapter outlines the research design and conceptual framework for the study, as well as ethical considerations that are important in conducting sensitive research with this population. The data collection and analysis processes are described, including the role of reflexivity in this type of research. Matters important to the rigour and credibility of this qualitative research are also addressed.

There is a long history of social research on HIV in Australia since the mid-1980s that has valued the principles of ‘partnership, agency, understanding practices and reflexivity’ (Holt 2014, p. 214). These principles enabled close collaborations between researchers and community organisations taking a sex-positive approach to preventing HIV transmission and living with HIV. A sex-positive approach celebrates sexuality, pleasure, appropriate experimentation and respect for boundaries rather than using fear to prompt behaviour change (Prestage et al. 2009; Kippax and Stephenson 2016). Early in the epidemic the ground-breaking Social Aspects of Prevention of AIDS (SAPA) 1985–86 effectively combined the capacity of a population-level, quantitative approach with insights into cultural processes from qualitative approaches (Connell et al. 1988). A supplementary study in 1991 tracked changes in gay men’s sexual behaviour since the 1985–86 study (Kippax et al. 2013). The Annual Gay Community Periodic Surveys have been introduced since 1996 to track trends in sexual practices and risks among gay men and other MSM (Mao et al. 2018). Other large scale studies, such as the LGBT community focused Private Lives study (Leonard et al. 2012), which was the largest of its kind anywhere in the world when initiated in 2006, and the HIV Futures studies (Power et al. 2019), which have taken cross sectional snapshots of PLHIV wellbeing since 1997, have also relied on the method of survey.

While these survey-based methods have informed much of the community-based response to HIV, they have not captured the complexity of the lived experience of living with HIV or explored in depth how those experiences evolve over time. In Australia, qualitative methods had been utilised to ask clinicians about their adolescent patients’ experience of living with HIV (Persson et al. 2017) and to

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explore why PLHIV refuse treatment (Newman et al. 2015). One qualitative longitudinal research (QLR) study, Straight Poz, examined aspects of living with HIV via interviews in 2005, 2007 and 2009 with urban HIV-positive heterosexuals and their partners. The Straight Poz Study found that the heterosexuals had lived experiences quite distinct from those described in the literature based on cross- sectional studies of mainly gay men, including that heterosexuals maintained a traditional doctor-patient relationship, while gay men engaged in partnership with health care providers (Persson et al. 2009).

In Australia, there has been no QLR study of gay men, who are the largest subgroup of PLHIV, before the Living Positive in Queensland (LPQ) Study (Fitzgerald et al. 2020). To fill this research gap, my study followed a group of gay and bisexual men who are living with HIV across time to explore the meanings they make of their lives and the changes occurring in their world that had not been captured in cross- sectional surveys. A QLR approach enables a holistic exploration of subtle interactions of those fluid and situation-specific factors that shape the processes of ageing with HIV, and provides access to ‘experiences, understandings and perceptions that mediate the ways in which people deal with and respond to social change’ (Holland et al. 2006, p. 6). Longitudinal examination of lived experience gives the lives of PLHIV attention that is crucial for evaluating whether the ‘current optimistic takes on the pandemic’ in the wake of new biomedical tools (Squire 2013, p. 28) are warranted or not. This evaluation is particularly important and timely as the effects of ageing are likely to have impacts on and change the life circumstances of PLHIV who survived the first eras of the pandemic.

4.2 Relation to the Living Positive in Queensland (LPQ) study

This thesis was part of a larger programme of research, the LPQ Study, a QLR project to accompany PLHIV across time and explore their lived experience of HIV between 2013 and 2017, with 73 participants completing more than 200 interviews. LPQ was funded by an Australian Research Council Linkage Grant (LP110200318) with a Queensland Health contribution. The study was focused on identifying complexities for PLHIV in relation to ageing, social isolation and access to services in regional and rural areas, and aimed to address emerging trends in the PLHIV population while increasing the visibility of HIV in Queensland. The study aimed to

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provide evidence to support the future design of effective HIV prevention services and health service delivery for individuals living with HIV in Queensland, especially in regional and rural areas (Fitzgerald et al. 2019). Ethics Approval was granted by the School of Population Health Research Ethics Committee, The University of Queensland for the LPQ Study (HC12405), and separately for this PhD (BG07092014). The project was implemented by a team of researchers from The University of Queensland in partnership with QPP, PD and QuAC. The LPQ Study had over 70 participants across the state and three rounds of annual data collection. Two PhD projects were developed to further examine specific aspects of the lives of PLHIV and this study on ageing experience is one of them. The other PhD study (Bolsewicz 2017) utilised a sample of 32 men and women from the LPQ Study, including heterosexual men and women and participants from 35 years of age, to examine the social needs of PLHIV including their sense of agency in gaining control over their lives. That thesis highlighted the importance of social connection and ties, and significant precarity across a range of social determinants of health.

Completing this study within and as an extension of the larger LPQ Study had the advantage of allowing me to join a research collaboration with strong formal links to the PLHIV and LGBTI communities. As one of the research officers of the LPQ Study, I bought to this team the credibility of more than 20 years professional involvement with PLHIV, including running the UNAIDS Collaborating Centre on HIV- related Stigma in partnership with GNP+. My PhD project investigates the lived experiences of the first-generation ageing with HIV. I selected 32 of the older LPQ participants who were gay or other MSM. This sample was stratified to include participants from all the regional areas of Queensland north of Brisbane. This enabled exploration of the intersection of ageing, location and homosexuality with HIV ‘careers’ (Seal et al. 2007; Worth et al. 2009). To add historical depth to consideration of the impact of living with HIV across time, the sample included 10 men diagnosed in Era 1, 8 diagnosed in Era 2, 10 diagnosed in Era 3 and 4 diagnosed recently in the current biomedical era.

In the team’s regular meetings with research partner organisations, I focused on ageing related issues, including discussion of the implications of preliminary findings on ageing with HIV. My coding of transcripts was made available to other team

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members to be utilised in development of reports and publications including the LPQ Study report (Fitzgerald et al. 2020).

4.3 Research design: Qualitative Longitudinal Research (QLR)

QLR has been increasingly utilised since the turn of the millennium to highlight the complexities of the life course and the interaction of people’s lives with their specific historical context (Thomson et al. 2014). Time, place and cultural context are all critical to the examination of lived experience, and QLR has been shown to have a distinctive ability to explore these dimensions (Neale and Flowerdew, 2003; Thomson and Holland 2003). The prospective approach using individual narratives enables a focus on the temporal dimension of experience (Thomson et al. 2014). Sensitivity to the temporal dimension of experience makes QLR particularly suitable for capturing the biographical depth of the study participants, with the specificity needed to highlight the complexity and multidimensionality of ageing with HIV (Thomson et al. 2014).

Participants are returned to and reinterviewed to investigate changes that occur over time, providing insight into the processes involved in that change (Holland et al. 2006; Saldana, 2003). The use of repeat interviews enables an understanding of the complex impacts of HIV on bodies and psychosocial circumstances, and relationships with others, as contexts change across time (McLeod and Thomson 2009). The combination of cross-sectional analysis within a particular phase of data collected (synchronic), and longitudinally across the phases of data collected (diachronic) helps identify themes and discourses across time. The focus on experiences over time allows insights into how change is created, lived and experienced to generate and mediate social circumstances (Thompson 2003; Holland et al. 2006).

Recording major turning points in life enable comparison of circumstances before and after transitions. Such practices offer an opportunity to explore how life course narratives are shaped. These critical moments and milestones can impact identity and sense of place (Crossley 2001). In addition, QLR methods draw attention to less dramatic changes by exploring ordinary, everyday experiences and the ways in which people manage their daily routines and relationships. This enables the processes involved in more subtle change and gradual adjustments to be valued

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(Calman et al. 2013). This depth of understanding has proved to be especially suitable for the study of how changes to health policy affect people living with chronic conditions, including adherence to treatment (Grossoehme and Lipstein 2016).

A key strength of QLR is that it extends the fine-grained analysis of context and the ‘particularity’ of lived experiences across time (Squire 2013, p. 12). QLR has already proved adaptable to the exploration of processes around resilience, social exclusion and mental health, and drug taking and sexuality careers, making it well suited for the study of the particularities of ageing with HIV (Holland et al. 2006; Seal et al. 2007; Worth et al. 2009). However, QLR remains rare given the practical difficulties involved in monitoring experiences of change across time, and managing the volume and complexity of the data gathered (Calman et al. 2013). Additional difficulties include funding, maintaining a research team for years, and maintaining participants’ commitment across the years (Miller 2000). Although the numbers of participants in QLR are usually relatively small as a result of the above reasons, the amount of data it gathers is huge and in-depth, which facilitates a fine-grained analysis increasingly utilised in studies of social determinants of health (Corden and Millar 2007; Bernays et al. 2014).

People tend to construct coherent life narratives to present a meaningful life to others, but following the participants over time and paying attention to unspoken or indirect statement aids interpretation (Braun et al. 2018). This includes sensitivity to inconsistencies or ‘incoherence’ in the narrative, and the ‘endings, repetitions, and silences’ (Poirier and Ayres 1997, p. 551). This, in turn, invites reflection on the meaning of such ‘incoherence’ or ambiguities (Watson, 2006), and the way departures from the main narrative possibly flag emerging contractions or expansions in the way individuals lived their life (Charmaz 1991). It also helps reveal the unintended consequences of changes to government policy and funding arrangements, and the interaction between the structural determinants of wellbeing and individual agency, and even collective agency. There were a series of substantial social and political changes to the life context of PLHIV in Queensland during the course of this study, as the structure of service provision was radically altered, treatment options and optimal timing to commence treatment was brought forward, and biomedical prevention methods that could possibly reduce stigma became available. These changes were part of a growing medicalisation of the

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response to HIV with a concerted focus on testing 90% of PLHIV, putting 90% of them on treatment, so that at least 90% of those on treatment would have an undetectable viral load (Queensland Government 2013; Queensland Government 2016). Options for participants were further constrained by the political and financial marginalisation of QuAC, the main LGBTI community controlled organisation in Queensland, the closure of PD, and the withdrawal of funding support for long-term HIV survivors unless their needs were related to treatment adherence (Howard and Porter 2012).

4.4 Conceptual framework

In this thesis, the QLR design was guided and informed by a life course perspective, which is a multidisciplinary research paradigm that emerged from the 1960s for the study of lives in specific socio-historical contexts. Elder and colleagues (2003) have specified five elements of life course theory, as shown in Table 2 and explained further in subsequent section.

Table 2: Elements of life course theory, based on Elder et al. 2003 (p. 16).

1 Development and ageing as life-long processes

2 Human agency enables choices

3 Interplay of historical times and places

4 Timing of social roles and events

5 Interdependent lives

The central premise of a life course approach is that lived experience happens in a context, so prior experience is integral to how following periods of life are lived, and to aspirations for the future (Mortimer and Shannon 2003). This history, or biography, intersects with social structures (Mills 1959) to shape the life pathways of individuals and populations. The approach enables exploration of continuity as well as changes in context for generations experiencing historical events at around the same time in their lives (Elder 1994). Thus, the life course perspective assumes that periods of

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stability and transitions in life underpin distinct trajectories of individual lived experience, but also help contextualise sub-cultures made up of people, such as gay men and PLHIV, who act outside the conventional boundaries of social expectations (Elder et al. 1996). To put it in other words, the individual life course is affected by the social conditions of historical eras, social change, and connection with others (Elder et al. 1996; Settersten 1999; George 2017).

In addition, people are not seen as passive in this process which recognises the interplay that can creatively challenge social structures and create social space (Elder 1994; Butler et al. 2008). This aspect of life course approaches facilitates inclusion of the contributions of the Gay Liberation and PLHIV Empowerment movements, and other ways that individuals construct social space in constrained or hostile environments. This is particularly important in this study as major transitions affecting the life course of the participants had included the decriminalisation of homosexuality in Queensland in 1990, the AIDS-crisis years, and the ART breakthrough, and such major events were cumulative impacts that affected the life trajectories of entire generations (O’Rand 1996; Ferraro and Shippee 2009). Therefore, in this study diagnosis of HIV was treated as a focal ‘turning point’ in participant lives, reflected in the decision to group participants according to the historical era in which they were diagnosed, rather than simple age stratification.

Examination of the interdependence of participant lives was important in this study because they had often had a period of severe illness and needed care, but their chosen family and social networks were also impacted by deaths of loved ones and peers due to AIDS-related conditions. The different life trajectory of gay men compared with heterosexual men who have well-defined, socially expected and approved stages, highlights the importance of the LGBTI community in shaping and improving their lives, and providing a supportive network. Involvement in collective mobilisation around historical turning points (decriminalisation, AIDS volunteerism), as well as interaction with work and biological family, provided the opportunity to explore what was meaningful in their life course beyond individual survival (George 1993; O’Rand 1996).

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4.5 Recruitment and sampling

Recruitment of participants for the LPQ Study from across the vast geographical area of Queensland was enabled by past collaboration between The University of Queensland and local HIV organisations. Those collaborations produced a database of 115 PLHIV who indicated interest in participating in longitudinal research. People from this database who lived outside Brisbane and met the age criteria were invited to participate in the LPQ Study. Purposive sampling was used to ensure the participants reflected a balanced spread of PLHIV across the state, including across Indigenous status, age, and length of time diagnosed with HIV. Participants were provided with an information sheet about participation in the study (Appendix 1), and asked to sign a consent form (Appendix 2) at every interview.

To answer my research questions about the lived experience of ageing with HIV in regional Queensland, I selected 32 of the older LPQ participants. As the HIV literature generally considers ageing from 50 years of age, participants over 50 years of age at first interview were selected. However, only two Indigenous LPQ participants met this age criteria. It is well recognised that Indigenous men in Australia have a 10.6-year gap in life expectancy (Australian Institute of Health and Welfare 2014) compared with the non-Indigenous population, which has translated into eligibility to access government-funded aged care services fifteen years earlier than non-Indigenous Australians43. To address this gap, Indigenous participants aged over 40 years were included in the sample for this study. In selecting the sample, care was also taken to include about equal numbers of participants from each of Cairns and surrounding areas, Townsville and surrounding areas, Central Queensland, Sunshine Coast and surrounding areas, and a group of participants dispersed across more remote areas of Queensland. The participants needed to have some homosexual experience, and while most self-identified as gay, such identification was not a requirement. Men who were exclusively heterosexual and women were excluded. As far as I know, all participants were cisgendered, though this was not a requirement.

43 From 50 years of age compared with usually from 65 years for non-Indigenous Australians.

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Once participants were recruited, there was the challenge of retaining them across the years of the longitudinal study. A drop-out rate of nearly 20% was initially anticipated for the LPQ Study but regular, face-to-face interviews built rapport and relationships so that participants became increasingly committed to contributing through sharing their experiences. Regular newsletters (see Appendix 5—8) kept participants in touch with the progress of the study, and the use of email addresses made it easy to stay in touch with participants as they relocated. Death was the only reason follow-up interviews did not occur, though some interviews were delayed due to illness, travel and relocation interstate.

4.6 The method of semi-structured interviews

Semi-structured interviews were the primary data collection method for this study. Informants participated in two face-to-face interviews, each of about 90 minutes, in their home or another location of their choosing. The QPP office in Cairns and hotel suites in Cairns, Townsville and Rockhampton were provided as back-up options, but interviews also occurred in parks, libraries and restaurants as long as privacy and confidentiality requirements were met. Time was allowed for explanations, paperwork and gaining consent before every interview. The digital recordings of the interviews were captured on a Zoom Corporation HRn digital recorder. An electric extension cord and back-up batteries were always carried to ensure the interview could be set up in a comfortable and quiet location.

Despite some topics being difficult to talk about (Affleck et al. 2012), most participants were keen to share their story and appreciated participating in research not based on a long questionnaire. An additional advantage of the method for Indigenous participants was that a story-telling approach can provide a level of cultural comfort (Geia et al. 2013).

There were two phases of data collection:

Phase 1 – July 2013 to October 2014, plus an interview of one recently diagnosed participant over 70 years of age in late 2015. This phase is referred to throughout the thesis as timepoint one (T1).

Phase 2 – mostly November 2014 to December 2015, with a few in 2016. This phase is referred to throughout the thesis as timepoint two (T2).

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There were 32 participants in this study, and a total of 63 transcripts (32 from round one, and 31 from round two) plus accompanying field notes were available for analysis. I personally conducted 52 of the 63 interviews selected to make up this cohort of gay men. At T1 the participants were all living in regional centres and hinterland areas of the 1,700-kilometre coastline and hinterland between Cairns and the Sunshine Coast, or in more isolated rural locations in Queensland, Australia. At T2 the participants were interviewed wherever they had moved, which resulted in a few in the greater Brisbane area and interstate capitals.

I conducted 24 of the 32 interviews at T1. The first six of these interviews were co- interviews with Kasia Bolsewicz, which provided a mechanism for debriefing and refinement of the interview questions and techniques before embarking on the rest of the interviews. Kasia Bolsewicz and the LPQ Study Principal Investigator, Dr Lisa Fitzgerald, later conducted eight of the T1 interviews using the standard interview guide we had developed together (see Appendix 3). The team spent time in the field together while conducting interviews, and regularly debrief together to begin analysis. I listened repeatedly to the recordings of all the interviews including those I did not conduct personally and checked the transcripts against the recordings as part of preparation for the T2 interviews. This started my immersion in the participants’ lived experiences before I even met them in person at T2.

Lewis was interviewed by Fitzgerald and Bolsewicz at T1, and I was to interview him at T2. However, while scheduling that interview it was discovered he had died. I talked with his brother who gave some details of what happened in Lewis’s life after the first interview, which I recorded in a field note. Lewis was the only participant who died before T2 interviews. For T2, I interviewed all the participants except Harold. I reviewed the recordings of Harold’s interviews and the field notes thoroughly and decided it was valuable to include him to increase the number of Indigenous participants in the study. It was more challenging to undertake thematic analysis for the two participants I had not met (Harold and Lewis) as the content was disembodied and decontextualised compared to when I had the experience of meeting the participant face to face in their own living environment. These subtleties were accommodated in the iterative process of grounded theory as I reflected repeatedly on what participants shared and wrote thoughts about their lived experiences, all of which refined the focus of later interviews (Charmaz 2014).

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A range of approaches exist to gathering data through interviews. For this study, a balance between researcher and participant direction was sought, acknowledging the use of an interview guide as a checklist for the interviewer, but allowing the discussion to flow naturally, following the lead of the participants within the structure provided by the interviewer. Notes were not taken during interviews. In practice, this meant the interviews were a directed conversation to explore, in depth, the participant’s first-hand knowledge and views of their subjective world (Lofland et al. 2005). This type of conversation is not bound by ordinary conversation conventions and etiquette, and instead uses a questioning style such as ‘Could I ask you?’ and ‘I don’t know if this is an appropriate question or not’ (Rosenblatt 1995). To encourage participants and invite them to explore topics in more depth, their words were sometimes repeated back to them followed by interview silence to invite more reflection. Guided by changes in tone indicating emotional intensity or ambivalence, a judgement was sometimes made that it was safe and appropriate to invite participants to expand on what they meant by particular observations, rather than accept ‘taken-for-granted’ meanings of words chosen by the participant (Charmaz 2014, p. 97).

Separate interview guides were developed for T1 and T2 (see Appendix 3 and 4). I was an active member of the LPQ research team that designed these interview guides in collaboration with the research partner organisations. The input of the latter was valuable guidance as the organisations had a working knowledge of emerging concerns and areas of weak practice. The first draft of the T1 guide was field tested with three participants known to be familiar enough with research methods to productively critique the interview process. This was done by me together with another researcher, and the feedback from the participants was used to improve the subsequent interview process and questions.

Informed consent was renegotiated and gained before every interview. Memory issues sometimes became apparent when participants were asked to timeline past experiences, and while this seldom obscured description of the life trajectory or the meanings constructed about those experiences, the dates given for specific events may not be precise (e.g., year of diagnosis or year of re-location). Participants often used some sort of euphemism or shorthand to refer to their condition. For example, one participant repeated throughout the first interview ‘I hate brain fade’, when he

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was stalling for time to recall a word he was stuck on. Another participant illustrated the unreliability of his memory during the second interview when he said ‘I don't know, oh yes I do, no I tell a lie, yes I do, I do remember now. I forget things I tell you.’ Avoiding pressure and patiently slowing down the interview usually enabled the participants to relax and get back on track in recounting their lived experience.

QuAC had been a key organisation in Queensland when a partnership approach to responding to HIV was adopted, enabling affected communities, researchers, service providers and government to collaborate in what has been acknowledged as an example of highly successful public policy (Fitzgerald et al. 2019). However, the T1 interviews began just after a newly-elected Queensland Government defunded QuAC44, for gay men’s HIV prevention, seriously reducing its capacity to improve the social determinants of health in LGBTI communities. The second round of interviews started just as PD closed after not bidding for continued funding, leaving PLHIV without the specialist services PD had provided for a decade, including brokerage assistance to access mainstream services. The timing of the two phases of interviews enabled initial reactions to those changes to be captured. However, the full impact of the changes was delayed by QuAC continuing some services self- funded from organisational reserves, and PD putting plans in place for each client for the year following closure. PD client files were all destroyed.

The T1 interviews started with reiteration of the purpose of the research and confirming demographic data. The interview started with broad, open-ended questions, followed by focusing in on the key research questions. Key areas explored were how they came to be living where they were and their experience of community, followed by an overview of what had shaped their life. Relationships and sex life, health and wellbeing, and ageing were all explored, including how these have changed over time. These questions enabled a life course history of the participant to be told, including the experience of HIV diagnosis and living on with HIV. Time was devoted to exploring the issues raised by participants. The interview

44 Trading as Queensland Association for Healthy Communities at that time.

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finished with discussion of their plans for the following year. Observation of the home environment sometimes suggested further matters to be explored with participants.

Being in the participants’ home for an interview enabled me to gain impressions of their day-to-day living environment. These impressions and other reflections on the interviews were recorded as ethnographic style field notes immediately after each interview and incorporated as additional data, a technique compatible with QLR (McLeod and Thomson 2009).

Review of the gaps in the T1 data and further consultation with the research partner organisations informed the development of interview guide two. My review of T1 transcripts showed that participants had often talked about ageing only in a superficial or indirect way, so I prepared questions for the T2 interview guide to specifically support safe direct reflection on ageing issues. This included asking about utilisation of aged care services and impressions of the HIV competence of services, experience of disability and the disability support pension (DSP), living with comorbidities, and attitude to possible premature ageing (see Appendix 4, part 7). Regular meetings occurred with the research partner organisations to discuss emerging issues and refine the research processes, arrange practical supports as needed, and plan dissemination of findings back to participants, other PLHIV, and service providers throughout Queensland, and beyond.

Before conducting each T2 interview, I prepared by reviewing the T1 interview transcript and field notes, or if I had not personally interviewed at T1, I listened to the recording and summarised the content with key quotes modelled on a case history approach (Henderson et al. 2012). This preparation meant I was freshly aware of the details the participants had shared; participants often did not remember all the details they had shared the year before. At times this enabled me to reinforce that the participant was carefully listened to and that that they shared was important. However, I avoided the temptation to prompt consistency in the narratives as noting the ways that personal narrative evolves and is reconfigured is valuable and revealing.

The T2 interview invited exploration of what had occurred since the first interview. The reasons behind any geographical relocation were explored, along with changes in health, finances and relationships. The effect of new biomedical prevention tools

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on sexual opportunities and relationship were raised along with experiences of community, stigma and discrimination. The standard T2 guide was supplemented by me for each participant with tailor-made questions developed from review of their T1 transcript and the field notes made following the T1 interview. This provided an opportunity to sensitively address gaps or silences in the narratives that could indicate difficult to discuss topics. Sometimes this included reflection on how and why the future plans they articulated at T1 did or did not come to fruition as projected, a focus on social isolation, and the impact of the major changes in support services to PLHIV that had occurred.

My age, gender, sexual preference, status as a rural Queenslander, and near 40- year involvement in the HIV response helped build rapport enabling participants to share highly personal information, experience and reflections confident they would not likely be judged negatively. However, the history and experiences we had in common could have been a disadvantage if participants felt that there was no need to explain their experiences, assuming it was already understood. This was another reason to strategically encourage more reflection when participants skimmed over an experience or issue, to seek clarification, and occasionally to even invite reflection on the meaning of such experiences for themselves and others. There were also challenges associated with what I bought to the research process. These challenges are addressed in some detail in section 4.10.

4.7 Data management

This study followed the record and filing systems of the larger LPQ Study, which had a data management plan covering security, file naming conventions, and back-up provisions. Basic demographic data and contact details were collected for each participant and stored in the secure database, which was password protected and only accessible to the LPQ team. The database noted the participants’ preferences on how to be contacted to ensure no breaches of confidentiality. Interview appointments were made well in advance as part of making travel arrangements to regional areas, and reconfirmed the day before each interview. Duplicates of recordings of interviews were transferred as soon as possible into the LPQ secure section on The University of Queensland server with its automatic back-up. This

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transfer was possible from the field. Paperwork carried in the field was kept with the researcher at all times, and never left unattended even in a locked car or hotel room.

Each participant was assigned a unique code to de-link the stored recordings and transcriptions from the separately stored identifying data, and all data was password protected. Pseudonyms were allocated within the LPQ Study database and were maintained for this thesis to enable comparison across publications. Participant interviews were transcribed by a profession agency Digital Transcripts (Blackburn South, Victoria), but checked by me against the digital voice recordings. Identifying details were not included when quoting participants.

Numbered memos were used to capture nascent analysis and to write for discovery of insights and connections, developing a memo bank (Glaser 1998). Given the impact of social circumstances on PLHIV, including stigma and discrimination, it was also important to track the historical context of lived experience, so a record of major community and political events, including a collection of press clippings, was kept throughout the study.

4.8 Data analysis

The longitudinal nature of this study enabled exploration of changes that occurred over time, and what drove those changes (Holland et al. 2006). An inductive approach informed by grounded theory was taken towards analysis of the data and from time to time participants’ own ‘telling terms’ became codes (Charmaz 2014, p. 109). Two directions of inductive analysis enabled fine-grained detailing of lived experience and context (Corden and Millar 2007, Bernays et al. 2014). A cross- sectional (synchronic) analysis was undertaken within each phase of data collection to compare participants and focus on issues across the sample. Then a longitudinal (diachronic) analysis compared T1 and T2 vertically to explore how lives played out across time (Holland et al. 2006).

To condense the wealth of rich data and present the whole story of a participant’s life course, four case studies were produced and are presented in Chapter 5. Presenting these case studies using the voice of the researcher involved balancing the need for anonymity with the provision of meaningful specificity, using the participants’ own language where possible (Thompson et al. 2014; Henderson et al. 2012; Shirani and

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Henwood 2011). Case studies also complement the longitudinal perspective in narratives about how participants mediated meaning and the specific outcomes in their life course or ‘career’ (Seal et al. 2007; Worth et al. 2009), looking ‘both backwards and forwards in time’ (Neale and Flowerdue 2003, p. 194). Beginning case studies while data was still being collected assisted immersion in the data, but ultimately incorporated both T1 and T2 content and provided insights into what shaped the life course across time.

Thematic analysis was the method used to identify patterns in the data. In the thematic analysis approach, researcher subjectivity is a resource for interpretation of the experiences shared by participants and to answer the research questions (Braun et al. 2019). Thematic analysis involves a range of techniques to analyse text and develop themes that elucidate the essence of the lived experiences of the research subjects (Vaismoradi et al. 2016). Although there have been attempts to describe standardised procedures for data analysis, flexibility remains a feature of the approach to ensure systematic processes support rather than hinder the intuition and creativity of the researcher (Braun et al. 2019). However, a staged approach to the production of themes provides transparency about method and helps yield credible results that are well-grounded and practical enough to inform policy responses and programmes to improve the situation of research participants (Viasmoradi et al. 2016). The thematic analysis was a recursive process, rather than a linear progression (Braun and Clark 2006; Creswell 2012). The phases of qualitative data analysis described by Green et al. 2007) are useful for conveying the progression through the process of data immersion, coding, creating categories, and generation of themes.

4.8.1 Stage 1: Data immersion

Sixty-three transcripts were included in the analysis. Thirty-two participants were interviewed at the first time point, but only thirty-one were interviewed at the second time point as one participant died before T2. I conducted most of these interviews personally which gave me firsthand experience of the tone and other important content not captured in a transcript, and my direct observations of the participant’s home environments and surrounds. I listened to the recordings, and read the contemporaneous field notes of the interviewer when I was not the interviewer.

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Checking the transcripts against the recordings for accuracy aided familiarity. In what was a time-consuming process driven by curiosity, transcripts were actively read and re-read and reflected on many times for familiarity with the whole of the data set. Analysis began while data was still being collected enabling possible themes to be identified, checked and evolve in an iterative process.

4.8.2 Stage 2: Coding

A planned approach was needed to manage the coding of such a large volume of data, but this was not done using a predetermined codebook, and does not imply a positivist approach to coding reliability (Boyatzis 1998). The coding process began as an inductive process working ‘bottom-up’ from the data itself (Terry et al. 2017). I used NVivo v9 (QSR International, Melbourne, Australia) to organise the coding, keeping T1 and T2 content separated to facilitate analysis within each time point, and across time. To set up an initial file structure in NVivo, I utilised a list of codes over three pages long developed by manually coding the transcripts of three participants. I then matched extracts from all the transcripts to the most appropriate code in NVivo, or evolved the codes to accommodate new meanings. New codes were created, and/or existing codes were reordering, combined, split up and renamed throughout coding. The volume of changes to the codes decreased as coding progressed, until very few changes and finally no changes were occurring.

4.8.3 Stage 3: Creating categories

Once initial coding of all transcripts was completed, I recoded the manageable chunks of T1 and T2 data within each code to begin to ‘see the meanings beyond the obvious’ (Braun et al. 2019, p. 853). I clustered the content into meaningful categories. Each category included diverse participant perspectives for that topic, but the primary aim was not to create a domain summary. Analysis of each category enabled me to move beyond what was explicit in the interviews, discern patterns, and detect exceptions to the patterns. Critical moments in the participants’ stories were noted paying attention to silences and hints of insightful perspectives in the narratives. A suitable label was selected for each category to represent the ideas arrived at through the analysis. An example of mapping of code clusters to form categories can as seen in Image 12, and this was supplemented by free writing

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within the memos to draw out important connections and the scope of individual themes.

Image 12: First draft thematic mapping for Daily Activity category. Research diary entry 17 May 2016. 4.8.4 Stage 4: Generation of themes

In some research approaches, themes simply describe the phenomena participants made explicit during interviews, relying on participants’ own explanations, understandings and descriptions (Hansen 2006). Although that is useful data, analysis of what is latent or implicit in the transcripts drove the process to fully develop a coherent and compelling interpretation of the meanings of lived experience (Braun et al. 2019). To best capture the ideas being conveyed, the themes generated were usually best represented by a phrase or sentence to capture the ‘uniting idea’ of a theme (Sandelowski and Leeman 2012; Braun and Clark 2019, p. 593).

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A useful strategy employed in this process was taking breaks from interaction with the data to create ‘distance’, enabling reappraisal of the analysis in a process that should not be rushed (Vaismoradi et al. 2016, p. 106). The refinement of themes was aided by reflection in the form of numbered memos to organise the capture of emergent ideas (Charmaz 2014). Themes were checked to see if they worked in relation to the coded extracts, and the entire data set. An example of themes produced from instances where participants reflected on ageing with HIV is provided in Table 3.

Table 3: Steps in production of themes for Ageing with HIV content in T1 and T2 transcripts.

Immersion Codes Categories Themes

‘Ageing Close friendships /sexual relationships Key support Ageing tests strength with HIV’ in of social network transcripts and field notes

Historical impact of homophobia Coming Out Salience of LGBTI and Late Bloomers – sexual identity PLHIV identities questionable in Bi-sexual or not coming out? regional areas Protecting identity implications –

limited support/not connected to gay

community

HIV and other conditions Decline of body Good knowledge of body Comorbidities threaten ‘breathing Optimism and skill to look at positive space’: return to side of things uncertainty. New conditions open new avenues of

support

Thinking about the needs of others

Thankful for the small things Generativity Serving others gives Wisdom to offer life purpose

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Reasons to relocate

Experience of past informs navigation of service provision. Mobility Push/pull factors underlie mobility and engagement Long term impacts – ongoing

How to weigh up factors:

- Cover stories - Self-stigma Stigma Weighting up - Not disclosing disclosure and self- Gay spaces closing or becoming protection integrated

Writing Chapters 6 and 7 was another opportunity to check the themes I generated, and discard any that were not working. This further working deepened meanings within the rich detail of the data set to answer the research questions and give a voice to the experiences and motivations of the participants (Braun and Clarke 2006; Braun et al. 2019).

4.9 Rigour and Validity

How the research was conducted was of critical importance to its quality and reliability. The nature of qualitative research practice is distinct from that of positivist and quantitative research, but it remains necessary to demonstrate the validity of arguments put forward (Richards 2015; Braun et al. 2019). A valid argument is one properly rooted in the data and soundly constructed, with clear procedures outlined that enable the findings or interpretations to be checked step by step (Richards 2015). Rigour needs to be demonstrated throughout the research process, including sound methods of data collection, a systematic analysis of the whole data set, and clear links between evidence in the data and the interpretations made (Lewis et al. 2014). Morse (2015) has provided a critique of the Guba and Lincoln (1989) criteria that are widely utilised in the field of qualitative research, and recommended alternative strategies for attaining validity (Morse 2015). Not all of the strategies

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described by Morse are applicable to the methods used in this study, but those discussed in the following section are.

4.9.1 Prolonged engagement

I personally interviewed most of the 32 participants twice, which provided a rich data set. Yardley (2017) has asserted that in-depth engagement of this type demonstrates commitment and rigour, and important aspect of demonstrating the validity of qualitative research. The longitudinal nature of this study enabled prolonged engagement with both participants and research partner organisations during the study.

Repeat visits to participants and regular meetings with research partner organisations provided time to observe and listen, explore impressions, deepen interpretations and test the coherence of candidate themes. Although only interviews from T1 and T2 were utilised for this thesis, I also conducted T3 interviews for the LPQ Study with most of the participants included in this thesis, which was an additional opportunity to check whether the themes being generated remained valid.

4.9.2 Thick description

Thick description was aided by strategies that allowed participants to get to know the interviewer. Informal interaction before interview, including attending to paperwork describing the research and support options, then gaining consent, gave the participants time to assess the interviewer and to build trust. Being empathic as participants shared their lived experience, and during analysis of the resultant data, was critical to the quality of this research. This required the capacity to engage with discomfort, to ‘sit in the fire’ to clarify suffering, grief and death (Mindell 2014, p. 29). The extent and depth of mental health struggles, including suicidality, that the participants were willing to share was at times confronting and painful to witness, requiring debriefing within the LPQ team, meditation and reflective writing, self-care and a determination to honour the trust the participants extended to the research process. The process pushed me forward in the development of ‘metaskills’ (Mendell 2014, p. 183), including feelings skills and attitudes needed to be of service to others.

4.9.3 Peer review and debriefing

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A major advantage of this study being embedded within the larger LPQ Study was participation in LPQ team meetings and debriefings, including numerous discussions to share perspectives on the data and deepened insights to aid conceptual development of the study. These discussions did not aim to produce consensus, but did inform joint development of conference posters and presentations. My coding of the transcripts was checked by the LPQ Principal Investigator, and utilised by LPQ team members for the development of the final report of the LPQ Study (Fitzgerald et al. 2020). In addition, regular meetings were held with representatives of the research partner organisations to test interpretations of the data against their long experience in providing peer and professional support to PLHIV.

This study was conducted within the research protocols established for the LPQ Study, as outlined in the ethics approvals for the LPQ Study, and for this study. A record was kept of decisions made during the collection and analysis of data (Giacomini and Cook, 2000), including in my research diary, and reflected on in numbered memos (Silverman, 2001). Minutes of the regular meetings with research partner organisations were kept, and I kept notes of meetings with my supervisors. The coding methods favoured working from the data as described in detail above, rather than relying on the structure of the interview guides or existing research. A key criteria for the credibility of the meanings ascribed to shared lived experiences is whether those interpretations ring true to the participants (Lincoln and Guba, 1986). In some studies, this involves research participants commenting directly on the interpretations made by the researcher. While at one level this would be consistent with the GIPA principles, it is of limited value when the analysis moves beyond description and into interpretation of meanings and an overall story of the data. Direct member check back would have provided another set of data to be analysed, when a wealth of longitudinal data was already available. Seeking the participant insights into research processes would involve an emotional and practical burden (Calman et al. 2013), and the value of seeking such confirmation has been questioned as potentially creating confusion rather than confirmation, particularly as individuals tend to seek out their individual perspective rather than the collective picture the researcher is crafting (Sandelowski 1993).

While direct check back of interpretations with participants was not part of this study design, there was regular engagement with the research partner organisations,

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which included reflection on the interpretation of what the participants shared, which informed QPP’s decision to invest in developing ways to measure quality of life. Articles exploring some themes shared by participants were published in QPP Alive45 to reflect back to the participants and the broader PLHIV community in Queensland, and so reinforce that this research was not a one-way street where researchers took from participants who got nothing back to benefit themselves or their communities.

The findings presented in this thesis have been tested at preliminary stage through presentations at numerous workshops and conferences as detailed at the beginning of this thesis. This research has also been utilised by the National Association of PLHIV for their HIV and Ageing project, by ASHM via their Roundtable on Quality of Life issues for people ageing with HIV, and by the National LGBTI Health Alliance via their 3rd LGBTI Ageing Roundtable as well as their national Working Group providing evidence to the Royal Commission into Aged Care Quality and Safety. These provided opportunities to test and refine assumptions and ideas.

4.9.4 Analysis of negative cases

The avoidance of deep discussion of the topic of ageing by most participants was a silence particularly important to understand in this study, and one strategy to address this was inclusion of direct questions on ageing in the T2 interview guide. Morse (2015) recommended, for this type of research, care should be taken to attend to missing responses. Morse also makes the point that comparison of the more common experiences of participants with ‘negative cases’ (i.e., the exceptions or outliers), aids understanding of ‘the norm’ (Morse 2015, p. 1215). Care was taken to consider the perspectives of all participants rather than rely on those who expressed the lived experience in a very compelling way. In this way, the interpretation of the data took account of the unusual perspective and experiences, to better explain the forces at work. Examples of outliers in this sample were those in robust physical and

45 QPP Alive was the quarterly magazine published by QPP until Summer 2015 to highlight the diversity and lived experience of PLHIV, as well as treatment and community updates. Updates on the research process were provided and I contributed an article on volunteerism to highlight the contributions PLHIV were making to community, while my colleague Dr Katarzyna Bolsewicz was lead author for an article on the importance of pets in the lives on PLHIV.

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mental health with full-time employment, and those who had been very public about their homosexuality and HIV positive status.

4.10 Researcher subjectivity and reflexivity

My ‘insider’ status arising from decades of involvement in LGBTI and HIV NGOs needed to be managed to ensure my status aided rather than hindered the process (Greene 2014). The experiences I brought to the research process, including more than 40 years as an LGBTI activist and over 30 years of involvement in the response to HIV, were outlined in the Researcher Positioning section (section 3.4), and such reflection informed my practice as a researcher. My background prepared me to listen to what participants said, to witness their experiences, and share significant moments of connection. LPQ Study newsletters have given participants some information about my background via news items and a short biography (Appendix 5). Participation in the LPQ Study was an opportunity to draw on these decades of personal and professional experience, to do what I could to ensure the voices of PLHIV are heard loud and clear, and to make a difference. I feel a strong need to do these stories justice.

Reflexivity and transparency are key strategies in this situation to ensure the researcher’s ‘position, privileges, perspective, and interactions’ are accounted for (Charmaz 2014, p. 13), and explicit reflexivity can also clarify the audit trail (Horsburgh 2003). Throughout this study I have engaged in reflexivity, an ‘active engagement of the self in questioning perceptions and exposing their contextualized and power driven nature’ (Greene 2014, p. 9; Bourdieu and Wacquant 1992). I strove to remain conscious of the influence I exerted on the data collection, analysis and presentation of findings. Aware that my conclusions about what I see and learn are interpretations influenced by my own experience and pre-conceptions (Charmaz 2014), I kept a research diary and wrote numbered memos to capture reflections. This was important when dealing with the complex and diverse testimony, particularly when individuals seemed to contradict themselves. It was also an important approach to reflect on usual experiences such as those shared by the individuals who experienced community support after publicly disclosing their status, whereas most participants felt constrained by stigma.

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AIDS disrupted and altered the anticipated life trajectory of my generation of gay men (Menadue 2011). This AIDS Generation was exposed to HIV during their formative years ‘and as middle-aged men […] are as a group traumatized and fatigued from 30 years of war ’ (Halkitis 2014, p. 162). Halkitis (2014) makes the point the trauma extends to gay men who remain uninfected with HIV, but still experienced the psychological and social impacts of the epidemic on their own lives, as well as partners, friends and community. This makes me part of the traumatised AIDS Generation, and like other survivors I have not escaped unscathed; rather, the trauma has been ‘transformational’ (Johnston 1995, p. 270).

The presentation of testimony is not only influenced by the researcher during the interview. This testimony is then interpreted, meanings are ascribed, and categories created, and certain things and not others are deemed salient. Participants are often quoted in this thesis, but giving voice to them has gone beyond such direct quotations (Fine 2002) as I selected narratives to convey the importance and meaning of ‘key’ lived experiences and to support my interpretations and recommendations (Braun and Clark 2006, p. 82). The approach involved me in the knowledge production journey as ‘a storyteller, actively engaged in interpreting data through the lens of their own cultural membership and social positionings…’ (Braun et al. 2019, p. 848). Therefore, a critical aspect of the processes and results is accounting for the subjectivity of the researcher as I sought to amplify the voices of participants through my interpretation and presentation. I have outlined my story in Chapter 3 as an aspect of the necessary transparency about what I bought to the research process, and included comments and reflections as relevant in other chapters.

A key correction I needed to make to my assumptions came about because coming into the research I had been influenced by the optimism of the biomedical narrative that the needs of most PLHIV were solved by improved treatment, and that stigma should be decreasing. This is just not the case. Based on my experience living in regional Queensland I had correctly assumed that homophobia and HIV-related stigma were likely to be slower to change than in urban areas. However, I was surprised by the extent of isolation, disability, mental health challenges including anxiety, depression, suicide attempts and ideation, poverty, and memory problems

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participants were experiencing, and the extent to which many felt abandoned and silenced by government and the emerging community response to HIV.

The interaction with participants and immersion in the data had a powerful effect on my feelings and mood, and making space for reflection on such feelings is part of the LPQ method (Thompson 2003). At times this concerned me as I experienced a feeling very like depression. Given my immersion in the difficult lived experiences shared by many of the participants this should perhaps have been anticipated, and even welcomed. In the grounded theory approach, Glaser even characterised his research process as a ‘transition from input into depression and out through writing memos’ (Glaser 1978, p. 24). Memos and post-interview field notes were the key mechanisms through which reflection on my interactions, reactions and emergent perspectives were processed and captured as data.

Notions of vicarious trauma were of limited use in managing these feelings, particularly when they were triggered by accounts of the long-term impact of structural violence and injustice (Adonis 2020). The researcher experience, described by Muller (2014b), was instructive in acknowledging the importance the connections between the researcher and the participants sharing knowledge and identity, which for her was an intense journey of rediscovery and recovery with decolonisation and spiritual dimensions. Muller almost abandoned her first PhD as she struggled with the effect on her as Aboriginal and Torres Strait Islander participants shared stories of injustices, but ultimately that struggle connected her more deeply to the principles underlying her theory of Indigenous practice (Muller 2014). Reflection on my struggle reinforced the importance of the research and its potential to contribute to social change by amplifying the voices of participants, while also informing policy and service development responsive to existing and emerging needs. Like Muller, I struggled with the enormous responsibility this task brings and it was invaluable to be part of a research team that provided opportunities for debriefing (DeLuca and Maddox 2016).

Witnessing the lived experience of PLHIV who are struggling is confronting and outside the comfort zone of PLHIV—even HIV- gay men who consciously maintain a positive outlook to manage their own journey of resistance to HIV stigma and homophobia. It is also an inconvenient truth for researchers and clinicians inclined to

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overstate the day-to-day benefits of biomedical achievements, and bureaucrats and politicians looking for good news stories that help create a climate where funding for psychosocial services can be withdrawn.

This research is aimed to inform the creation of change, so it did not shy away from overtly political, activist research positioning (Ladwig and Gore 1994). In this, I was inspired by Patricia Hill Collins’s assertion that researchers need to invest in and work with the communities they study in the pursuit of equality and justice (Collins 2013). Such immersion enables researchers to begin to perceive and respond to the social dynamics at the intersection of race, gender, class and sexuality (Collins and Bilge 2016). This also aligned with the motivations of the research partners and many of the participants who valued efforts to achieve change and build community. As the data gathering stage of the research was completed, my engagement with PLHIV and LGBTI community included election as Central Queensland member of the QuAC Board and serving a period as Vice-President, and becoming a foundational committee member of the HIV Emergency Treatment Fund, which is an ongoing reminder every few days of the difficult social and economic circumstances PLHIV continue to face.

4.11 Ethical considerations, consent and care of participants

This research has the potential to improve support to PLHIV as they age in regional Queensland, and partnership with relevant community-based organisations ensured the relevance, ethical conduct and minimisation of risks, and proper dissemination of the research. Beyond the respect and protection that must be afforded all research participants, PLHIV are a population requiring special consideration given their dependence on medical care and the level of stigma and discrimination associated with HIV (National Statement on Ethical Conduct in Human Research, 2007 (Updated 2018). Therefore, particular care was taken to ensure informed consent, confidentiality, and debriefing. The research was approved by The University of Queensland, School of Population Health Research Ethics Committee (GB07092014), and included provision for complaints, withdrawal of consent and/or participation.

Interaction with Indigenous participants was guided by the NHMRC guidelines for researchers and stakeholders (NHMRC 2018). At the beginning of the research

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QuAC had an active Two Spirits programme, which gave it capacity to contribute supervision to ensure the research was conducted with cultural sensitivity46. Past research with Queensland Aboriginal and Torres Strait Islander men who have sex with men has warned of the power differentials between researchers and participants exacerbated by culture and language differences (Lawrence et al. 2004). Care was taken to use plain language and respect the language use preferences of participants, and to actively avoid creating shame by assuming prior knowledge about HIV and sexual health. For confidentiality and Indigenous protocol, communities and individuals are not identified, and, at times, details are obscured.

Given the potential vulnerability of the participants, particular attention was paid to ethics, and a risk management plan ensured the safety of participants and the researcher. Anonymity was guaranteed to participants enabling the voices to be heard of people who would not otherwise speak out about their lived experience. Although a few participants had been very public about their HIV status in the past, most were carefully flying under the radar as a way to avoid potential stigma, discrimination and violence in regional areas. Their approach was to reveal their HIV status to only their clinicians and a few trusted others. While this means participants have not been given the option of publicly owning their stories through this research, it has enabled the voices of people who would otherwise not speak out to be heard.

It was also important to provide a safety net to participants as the questions being asked could provoke negative memories or discomfort. As part of a risk management protocol, at every interview the participants were provided with an up-to-date contact list for information, counselling and all known state-wide and local gay community and HIV-related health care and support services. However, there were also instances where caution was exercised to touch lightly on raw and unresolved issues and let the participant lead (e.g., there were concerns that Phillip, who was recently diagnosed, had a particularly traumatic background).

46 In this thesis the terms ‘Aboriginal’, ‘Aboriginal and Torres Strait Islander’, and ‘Indigenous’ are used interchangeably. It is acknowledged that there are many cultural differences between and within Aboriginal and Torres Strait Islander communities and use of different terms does not intend to disregard such differences.

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Participants were also informed they could contact the interviewer or the Principal Investigator of the LPQ Study, with questions, complaints or to seek support. This occurred on many occasions. Two of these were recently diagnosed participants seeking better connection with support networks, and the third was to query about the limits of confidentiality guarantees if the knowingly and recklessly provisions under the Health Act were invoked and evidence for prosecution was being sought with a court order. This was a theoretical query and a form of advocacy driven by suspicion that the provisions under the Health Act had been misused in the past and to alert the researchers of the need to guard against this possibility. Dr Andrew Redman was retained as a HIV clinical adviser as needed but his support was never activated.

Renegotiating consent before every interview enabled the interviewer to reiterate in simple language the purpose of the research, explain how the data provided would be protected and utilised, recommit to anonymising the data for publication, and make it clear the participant could withdraw from the study at any time. It was repeatedly made clear that any question could be skipped. It was stated clearly that provision of medical care or access to any other service was not dependent on participation in the study and that participation in the study would remain strictly confidential. Gaining consent at each interview was particularly important in retrospect as several participants were experiencing memory problems. Written explanatory material on the research, including the contact number of the Principal Researcher, was left with every participant at every interview. A $50 gift voucher was provided to participants before each interview in appreciation for their time, and care was taken to ensure this was not interpreted as an inducement to take risks.

Ethical and confidentiality issues are amplified by this type of research as social interaction between the researcher and the participants outside the interview context occasionally occurs, and the research becomes part of the social and historical context (Bromley et al. 2015). I have occasionally interacted with some participants at Planet Positive (a regular PLHIV and friends social function convened by QPP), in local LGBTI social support groups, conferences, Pride Fair days, aged care forums, and in the street. At times, this has meant taking care to not acknowledge or approach individuals until they give a clear indication they wish to interact. The researcher being part of the social world of participants may raise trust issues

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around the confidentiality of stories shared, but on the other hand helps to lessen potential power differentials by positioning the research project as a partnership rather than something being done to, or taken from, participants (Bromley et al. 2015).

4.12 Conclusion

This chapter outlined the QLR research design and life course conceptual framework of the present research, which is situated in the context of the larger LPQ study. Research processes including recruitment and sampling, the use of semi-structured interviews, data analysis, rigor and reflexivity were addressed. The ethical considerations for this sensitive area of research were outlined.

Qualitative research methods facilitated a commitment to seeing the world from the participants’ point of view and as they experienced the world (Bryman,1984), but pushed analysis to what was implicit in their accounts rather than taking a positivist ‘coding reliability’ approach to ‘discovery’ of codes that were sitting in the data and only needed to emerge, or be uncovered (Boyatzis 1998, p. vii; Braun et al. 2019). Going into the participants’ homes and community enabled the researcher a little direct experience of that world. Participants provided stories about their world and how they experienced it, contributing to the researcher’s understanding, analysis and conceptualisation about that world (Braun et al. 2019). Undertaking visits over time enabled the researcher to engage with participant reflections about their reactions and adaptations to changes and what did not change, to witness and to make direct observations (Charmaz 2014). This data was organised and interpreted by the researcher and the findings are presented in the following chapters.

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Chapter 5 Introducing the Participants: Era of Diagnosis as Context for Ageing

In Chapter 3, Australia’s response to the HIV epidemic was discussed within the context of four historical eras. Each era marks a milestone in the biomedical response to HIV, and provides insight into the political and social climates that shaped the life courses of people living through those times. Within the context of this chapter, the eras are used to introduce participants according to the period in which they were diagnosed and to begin to explore the meanings of HIV in their lives and as they age. For the purposes of analysis, participants were grouped according to their era of diagnosis (Table 4) to facilitate greater understanding of how the lived experiences of these cohorts have been shaped by changing social, policy and biomedical contexts and how this interacts with the ageing process. In presenting this analysis of participants and their eras, each group is represented by a case study, an individual who serves to illustrate the richness of participants’ narratives, to enable a deeper exploration of their cohort, and provide a rich understanding of experiences.

Table 4: Participant grouping and pseudonyms. Case studies in italics. In age descending order with each era.

Era N Participant Pseudonyms

Early AIDS crisis 10 Duncan, Tyson, Matthew, Liam, Lewis, Greg, Stuart, (E1) Marco, Neil, Dominic.

Late AIDS crisis 8 Walter, Derek, Angus, Edwin, Jay, Warren, Marshall, (E2) Harold

Post-crisis (E3) 10 Gus, Xavier, Clayton, Julian, Rory, Jared, Andrew, Richard, Felix

Biomedical (E4) 4 Dennis, Russell, Phillip, Bruce

TOTAL 32

Participants in this study had many years’ experience living in regional Queensland, although by the second interview two had moved to urban Queensland, and one to

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an interstate urban area. Most participants identified as Anglo-Celtic, gay or bisexual, cisgender47 men. Seven participants identified as Aboriginal and/or Torres Strait Islander, and while they make up almost 20% of the participants, none were selected as a case study for two reasons. A limitation of this study was insufficient engagement with Aboriginal and Torres Strait Islanders’ processes around knowledge sovereignty and management; it would have been culturally inappropriate for me to delve deeply into the lived experiences shared. A different approach would be required to render a cultural reading. There was also a concern that providing details in a case study would be too identifying of the Aboriginal participants to guarantee their anonymity. However, a few observations can be made to provide some context. For Indigenous participants, sexual and gender identities were more nuanced (e.g., Two Spirits, Sistergirl, queer, gay, and bisexual/heterosexual) and varied according to context. For example, within Indigenous family and community relationships, an individual may be recognised as a ‘Sistergirl’, but may also use the descriptor ‘gay man’ when discussing their relationship with mainstream, predominantly white LGBTI communities. For some younger Indigenous participants, ‘queer’ was used as a more coherent bridge between Indigenous and other LGBTI cultures.

The following discussion of the four illustrative case studies provides important insight into the diversity of participants, both in relation to their experiences and their broader demographic characteristics (see Table 5). Pseudonyms have been allocated to each participant, and demographics and specific details have been modified to protect anonymity.

47 Assigned male at birth and identifies as a man.

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Table 5: Diversity of personal characteristics of case studies.

Greg (Era 1) Edwin (Era 2) Gus (Era 3) Bruce (Era 4)

Age Mid-50s 60s 70s 50

HIV 25+ years 20+ years 15+ years After 2010 diagnosis

HIV Very public, Confidentiality Partner and a Partner and a disclosure activist breached, open few family few local PLHIV, on dating site. members no family told Stigma from family.

Gay Always out, OK Traumatic Male partner but Female long- disclosure in family. No coming out, identity kept term partner and long-term recently ended vague. Past casual male relationships. 2-year female partners. partners. relationship Secretive.

Income DSP + small DSP (volunteer Retired Secure full-time business in past). No car job. Has own to save $. car.

Disability Physical – pre- Treatment side- Depression, None, refusing HIV. Chronic effects/neuropat memory anti- pain. Driver’s hy. problems. depressants. license Driving very disallowed. stressful.

Housing Renting – lives Public housing – With parent Own home – alone lives alone (carer of parent) with partner

5.1 Era 1: Early AIDS Crisis (1981–1989)

Table 6 provides an overview of the socio-demographic characteristics of the 10 participants diagnosed in Era 1 (E1). Greg was chosen to represent E1, not only because he shared much in common with other long-term survivors in this group, but because he was typical of activists from that era who had been very public about their gay and HIV identities to educate others. Greg grew up in an urban area, but like many in this cohort, had immediately moved to regional Queensland when diagnosed and told to prepare for early death. Across his life course, Greg’s relationship with health care providers was based on a partnership approach.

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Table 6: Participants diagnosed in the early AIDS-crisis era 1981–1989. Descending age order (n=10).

Name Age Yrs Partner Housing Work Comorbidities Relocation HIV+ T1–T2 Duncan 60s 30+ - Rental DSP PTSD - Depression Cognitive Tyson 50s 25+ - Public DSP Cancer - Housing 48 CRAFTS Homeless history Matthew 50s 30+ - Own Yes, then Depression - unemploye d at T2 Liam 50s 25+ - Own DSP Depression -

Lewis 50s 30+ - Rental P/T and Cancer Deceased Volunteer Hepatitis C by T2

Greg 50s 25+ - Rental DSP and Disability Just before home Depression T1 business Stuart 50s 30+ Long Public DSP Disability - distance Housing Homeless history Marco 50s 30+ Yes Rental DSP and ABI Yes carer Suicidality Neil 50s 25+ - Rental Flexible P/T Cancer Yes and DSP Depression Suicidality Dominic 40s 25+ - Rental P/T and Disability Yes Homeless DSP, then Suicidality history unemploye d at T2

Greg acquired HIV in his 20s, diagnosed in a time of distrust of authorities and near panic, as transmission modes and the natural history of HIV were unknown. Fear, stigma and discrimination were rife at this time, both inside and outside the health care sector. Like all in this cohort, Greg’s life trajectory was significantly disrupted by diagnosis and illness. He has lived most of his adult life with HIV and is now a member of the first generation ageing with HIV. Throughout his life, he has been an active contributor to the gay communities’ vigorous response to AIDS.

Greg had always challenged social expectations, summing himself up as ‘a troublemaker without intentionally making trouble’. He became aware of his

48 The participant labelled his memory problems CRAFTS, an acronym for ‘Can’t Remember a Flaming Thing’.

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homosexuality in the gay liberation era, at a time when homosexuality was criminalised. However, unlike some in his cohort, ‘I’ve never actually been in the closet’: he came out in his mid-teens and was fully accepted by his family. Growing up in urban Queensland, Greg’s parents instilled a Catholic ethos of social justice and activism in him.

Interaction with the medical profession started young for Greg. He experienced a workplace accident during his early 20s, but while in recovery he would frequently refuse the procedures specialists recommended. He was warned with a ‘patronizing point-wave of the finger’ that by refusing he would end up ‘in a wheelchair by the time you’re 30, but I’m not in a wheelchair yet.’ However, Greg has lived with chronic pain, recently had surgery and was on a waiting list for more. The pain and physical disability Greg experiences resulted in him being medically barred from driving; however, this meant he spends a great deal of time walking, which ensures he gets regular exercise.

Given past experiences with the health care system, Greg confidently insists on a partnership with his HIV clinicians. Beyond palliative care, biomedical science provided little support during the AIDS-crisis, which led many in Greg’s cohort to develop an interest in complementary therapies. For Greg, practices such as reiki and psycho-immunology, along with a positive attitude to living with HIV, could improve longevity. Greg, like many of his peers, was well informed about HIV due to the constant need to manage new and emerging information over the time of the epidemic. As one doctor told him: ‘thank God not all my patients are like you or I’d be out of a job.’ The need to access current information related to HIV and ageing was also critical for Greg and his cohort.

Diagnosis for Greg, and the cohort from his era, was experienced as a ‘death sentence’ and prompted immediate relocation to regional Queensland as a potentially more pleasant and less stressful place to live out what he thought would be a short life. In his search for a ‘therapeutic environment’, a place that would support his health (Williams 2002; Fitzgerald et al, 2020), Greg was determined to make the most of his circumstances.

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Being HIV positive was such a negative thing because there was no medication, there was no nothing, it was a death sentence and there was a huge amount of stigma around it so why not make it into something as positive as I possibly can.

Greg confidently adopted an activist stance identifying publicly as gay, and as someone living with HIV, to educate many groups. He did this despite warnings about the prominence of homophobia and HIV related stigma and discrimination in regional Queensland.

The mainstream community […] were very protective […] it was completely the opposite to what everyone expected to happen. They’d be making sure I was okay, checking up on me […] There were a few rampant fundamentalist Christians that had a problem, but they have a problem with everyone in general […] I did have a few death threats.

Greg’s advocacy work was thoughtfully combined with self-care and protection. He had been single for years feeling ‘too much shit going on in my life to […] bring into a relationship.’ At the second interview, Greg he had been dating another HIV positive person for a few months, but it resolved into a friendship. He treasured his independence and concluded ‘even if I was in a relationship, I don't know if I could actually live with them.’ Balance was achieved with a ‘reined in’ private life:

an odd mix of a public persona and a private persona so friendship isn’t something that I take lightly […] my inner-circle […] my protective wall sort of thing […] I don’t have social media […] they’re people that I can depend on, they know they can depend on me.

Greg was nostalgic about the camaraderie of the AIDS-crisis years, but did not volunteer much anymore, although he was willing to mentor newly diagnosed PLHIV in the local area if asked.

In the early stages of ART development, Greg had put off starting treatment as long as possible, but a decade previously his CD4 count fell to 300. ‘It got to a stage where my immune system was starting to fall apart […] I thought, now it’s time.’ When he first started treatment the side-effects were dramatic and made him ‘look

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and feel like an AIDS patient’, but he was persuaded to persist and the side-effects settled down over time. Greg was dedicated to self-care; in many respects he was an ideal neoliberal citizen.

I see that as my primary job. I’m the CEO and my health is the bottom line of my company.

Greg had been on DSP for many years and has also worked part time, carefully managing his own timetable to minimise fatigue. Work provided purpose and some funds to travel with a friend each year. Between T1 and T2 Greg experienced a new mental health challenge forcing him ‘to rely on drug therapy for a little while’.

I was in a state where […] everything was just boom, boom, boom […] one thought over the other […] way too much traffic […] I just couldn't function.

Consistent with many of his cohort, he had to negotiate multiple medications and was concerned the new medication interfered with his ability to meditate his ART; however, following a two-month break to travel, he was able to discontinue the anti- depressants. When discussing ageing, Greg had quite a philosophical approach to the uncertainty in his life, accepting that he could not control much of what will happen in the future, although he expected his physical disability would worsen with age. He was also concerned that it would take a long time for the biomedical breakthroughs to decrease HIV stigma.

Fear's a bizarre sort of animal. Sometimes it doesn't matter whether the lion's in the cage or not, it's still a lion […] it's going to take a long time before anything changes too dramatically.

Greg had survived when so many of his peers had died. He approached life with a tough pragmatism and strong sense of self, and like many in his cohort who faced the uncertainty of HIV and ageing, he had accepted that ‘anything can happen’. Like others diagnosed in the early AIDS crisis era, Greg was somewhat worn down by decades of concerted effort dealing with HIV, and resisted detailed contemplation of the implications of ageing given his already challenging circumstances.

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5.2 Era 2: Participants diagnosed in the late AIDS-crisis era (1991–1996)

Participants diagnosed in the second era were in, or approaching, their third decade living with HIV. Table 7 presents an overview of their socio-demographic characteristics. Edwin was selected to represent Era 2 (E2) as he typified the grit and determination displayed by many long-term survivors who continued to live with an emphasis on positive thinking, community involvement and using complementary therapies to enhance wellbeing. However, he also felt trapped in the regional location where he lived and intended to move back to an urban area as soon as he could afford it. He was selectively open about his status. His situation provided insight into the strong negative impact on wellbeing when confidentiality was breached in a hostile environment.

Table 7: Participants diagnosed in the late AIDS-crisis era 1990–1996. Descending age order (n=8).

Name Age Yrs Part- Own Work Comorbiditi Relocation HIV+ ner Home es T1–T2 Walter 70s Almost - - Pension Memory Yes 25 Arthritis Depression Derek 70s 20+ - - Pension Depression Yes and Volunteer Angus 60s Almost - Yes Pension Trauma - 20 Edwin 60s 20+ - Public DSP Podiatry - (late Housing Neuropathy diag- (homeless nosis) history) Jay 50s Almost Yes Yes DSP and - - 20 Volunteer Warren 50s Almost Yes Yes Unemploy Anxiety Yes 25 ed and Part- time @ T2 Marshall 50s 20+ - Public DSP Depression - Housing Harold 40+ 20+ - - DSP Depression - (non- adherent) Arthritis

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I know I’ve had a very, very difficult life and perhaps tragic as well. But in hindsight I consider myself to be a very strong person and I’m quite proud of it.

Like many others who were strongly connected to the gay community, HIV became a dominant focus of Edwin’s life for many years. Going on the DSP meant he could be part of the intense community mobilisation of that era. ‘I didn't do two hours a week, I did 30 so I treated it as a full-time job. I wasn't getting paid but I was there.’ This included helping to run a support group for PLHIV, but ‘two of them committed suicide, they couldn’t cope, and it was a very difficult time […] because we were all going to die [...] a lot of my friends are dead.’ This was a time of growing impatience about the lack of effective HIV treatment, and a willingness to participate in experimental drug trials that often produced a poor quality of life and lasting ambivalence about the drugs and their side-effects. Suicide and assisted dying49 became a way to escape the suffering, adding to the number of peers dying as young men.

Despite significant investment in community supports over E2, by the time of the first interview for this study was undertaken, changes to the funding of HIV services to PLHIV in Queensland had begun to have a dramatic impact. Edwin felt a sense of isolation, even abandonment, after he had invested years into creating a culture of care and a support system for PLHIV like himself.

Many across the study, particularly from E1 and E2, lived in public housing, a consequence of years of financial precarity. Edwin was able to access public housing and create a home, which was important to him. He took great pride in the renovation work he had done on a limited budget, as an expression of his good taste and as a person who sought to have agency over his life. This project provided insight into how Edwin managed on the pension.

I don’t have any extra income, but I don’t smoke […] drink […] take drugs and I don’t go out because there’s nowhere to go except the RSL and I hate I […] I eat lunch out every day, it’s cheaper. I always

49 A few doctors were willing to assist even though they risked prosecution.

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wait for twice-yearly sales […] I’m laughing all the way to the bank because I don’t have a car.

However, like many in his cohort and beyond, Edwin experienced significant stigma and discrimination. After ending a two-year relationship, Edwin’s HIV status was vindictively disclosed by his former sexual partner to an already hostile neighbour. The abuse he had already been experiencing escalated dramatically and the intrusion into his safe space was disturbing.

It’s not just homophobia now, it’s AIDS-phobia […] “Aren’t you dead yet, you dirty faggot?”, “Hey, faggot, are you still alive?” When I flush the toilet or clean the toilet, he runs out the back and he goes, “How’s your diarrhoea?”.

The ongoing abuse had a significant impact on his mental health and like many of his peers, he was managing ongoing mental health issues. To support his mental health, Edwin was on anti-depressants and had a mental health plan to access a psychologist 12 times per year. Despite this poor mental health, he was determined to maintain a positive attitude.

I have had very severe depressive thoughts at time when I've been in complete despair which is when I will drink a whole bottle of wine and wipe myself out and go to bed. But that happens maybe once every month or so.

Revealing these occasional binge drinking episodes contradicted his earlier characterisation of himself as ‘I don’t smoke […] drink […] take drugs’. There were a number of instances during the study when Edwin presented an idealised self, and then later contradicted that charactisation as he shared the struggle to maintain his preferred positive mental outlook and identity. Edwin was acutely aware that as someone ageing with HIV, he had an increased risk of multiple conditions.

I get a little bit frightened about getting older because the studies have shown that I’m prone to early onset of ageing problems like osteoporosis, arthritis, heart conditions.

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Nevertheless, as someone who was in robust physical health, he embraced the idea that his individual efforts would contribute to keeping him healthy in old age, and to some extent HIV had forced him to pay attention to his health.

Use it or lose it. That's what I do. I exercise every day and I eat well […] I don't see having HIV as a negative thing. The only negative thing about it is the social stigma attached to it.

In the future, he anticipated benefiting from a substantial inheritance and planned to immediately move back to a large city interstate, but like many in his cohort, he did not have the personal resources to leave his regional locale and remained ‘stuck’ in place (Fitzgerald et al. 2020).

5.3 Era 3: Participants diagnosed in the post-crisis era (1997–2010)

The Era 3 (E3) participants were in or close to their second decade living with HIV. Socio-demographic characteristics of the members of this group are presented in Table 8. Gus was selected as the illustrative case for E3 as he was approaching 70 years and was one of the oldest PLHIV in the study. His narrative captures the challenges faced by those diagnosed in E3 who were advised to delay starting treatment as long as possible. He had returned to where he grew up after spending time away leading an adventurous city lifestyle. Like other older men in the study, he was ambiguous about his sexual identity. He had memory problems and was leading a circumscribed life to avoid becoming overwhelmed by too many inputs.

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Table 8: Participants diagnosed in the post-crisis era 1997–2010. Descending age order (n=10).

Name Age Yrs Part Own Work Comorbidities Relocation HIV+ -ner Home T1–T2 Gus 60s 15+ Yes Yes Retired Depression - (late and Carer Cognitive diag- decline nosis) Xavier 60s 10+ - - DSP Chronic Yes anxiety Osteoporosis Clayton 50s 15+ - Yes DSP Cancer - (late Fatigue diag- Memory nosis) problems Fine motor problems Julian 50s Almos Yes Yes Yes and - Yes t 15 Volunteer Rory 50s 10+ - - DSP ABI, - Hepatitis C, Anxiety Jared 50s 10+ - - DSP HAND, coma, - (late bleeding, diag- diabetes, nosis) depression, neuropathy Andrew 50s Near - Yes DSP, Physical Yes 10 small disability, business chronic pain Richard 40s 10+ - - Yes and Physical - carer disability Felix 40s 15+ - Public DSP Hepatitis C - Housing ABI Homeless history Luke 40s 15+ Yes Homeless Student Psychiatric - history disorder

No matter what you’ve done in the past, how wonderful a life you’ve had and still you’ve got to deal with day to day things […] that’s what makes it hard to handle when you get depressed.

Gus already had significant life experience when he was diagnosed in his 40s. He knew from the beginning that treatment existed to extend his life, even if there were doubts about how long that treatment would remain effective against the virus. Deaths due to AIDS had dropped dramatically, and diagnosis was no longer a death sentence. Instead, HIV was seen as a manageable chronic condition. Therefore, diagnosis in

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this era did not alter relationships with time as dramatically as for those in E1 and E2, but he had still experienced considerable uncertainty. As the carer of an elderly relative, Gus had intimate knowledge of the ageing process. He was retired, and had given some thought to his future prospects as he got older. He viewed himself as sensible enough to accept residential aged care if it became necessary as he experienced cognitive decline.

In some respects, having had interesting experiences in his earlier life made it harder for Gus to deal with his current circumstances. Gus saw a pattern of unrealised ‘dreams’ throughout his life.

I was always a show off and the trouble is that I always come a cropper. So this has been the pattern.

He was the oldest participant in this era, retired and living on the aged pension. He had always struggled with a feeling of being ‘kind of outside it’:

I mean gay for a start, you learn to live with this kind of I don’t know if you call it a lie or what you want to call it, you can't be your real self I suppose.

Despite perceptions that his sexuality was contributing to a sense of being ‘outside it’ he did not express a strong gay identity:

I don't really categorise things too much about that. I suppose you would call it gay […] I don't even really think I’m gay. I just like having sex—I’ve always liked men. The male body is the thing that I just get, that’s the thing that attracts me.

In the past he had relationships with both women and men, but always for less than a year, until his current relationship.

Gus had grown up in the area where he was living, but some intensive development had occurred recently in what had been a quiet rural area and he found this disturbing. He had returned to live with and care for an elderly relative after living in a big city to pursue a career. Living in the family home provided a degree of financial

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security, but he was ambivalent about this tying him down as he aged. Although he would prefer to live in a quieter location he observed:

When you’re in pain for the night and you’re waiting for the ambulance to arrive you don't want to be too far from town. You don't want to be too far from the hospital.

Gus was running a small business until he got sick and was diagnosed with HIV. He had only 100 t-cells, which suggested it was likely he had been living with HIV undetected for many years. Unlike many others diagnosed in this era he could not delay starting treatment. He characterised all the turning points in his life course as ‘negative’ even if there had been ‘fantastic moments’.

It’s like all my beautiful ideas that I’d planned and things, they’ve all been completely shattered and wiped out.

He linked such recurring disappointment with how he felt about acquiring HIV, saying ‘the dream is always wonderful, but the reality of things is often not what you expect.’

Gus had been living with HIV more than 15 years at the time of his first interview and appreciated the care he had received. He had experienced some side-effects including ‘horrible nightmares’, peripheral neuropathy, and pain. He used marijuana to manage the pain.

I smoke dope. That helps you get through it all I think […] It used to be inspiring but see now I’m not inspired […] the smoke doesn’t inspire me much anymore. I think I’m just too old to be inspired. You need inspiration when you’re young.

Gus believed HIV treatment was complicating his ageing process, but felt his concerns were not taken seriously by his doctors.

You get called a silly old fart and you still feel like a kid anyway. It’s really weird, age and aging […] having to look at, long-term effects of all that medication.

Gus was experiencing memory problems, and was easily overwhelmed by too many inputs. He found driving increasingly stressful, had some sight issues and was still travelling very long distances to Brisbane every six months for the monitoring of his HIV. He described the care in Brisbane as ‘very intimate’. He felt the impact of the

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defunding of PD saying, ‘you had someone to talk to whereas now there's no one’. He was fortunate to have the finances to pay for dental care as needed.

By interview two, Gus had creatively crafted a way to get out of the house and spend time with his ‘mate’. They had acquired and were renovating an off-grid space together, which ‘completely changed everything, my life’s completely changed I think really, it’s just total involvement…he couldn't do it without me and I couldn't do it without him.’ They spent their days together, and Gus returned to the family home each night to care for his elderly relative. This project had enabled him to stop taking anti-depressants as ‘I'm not depressed anymore […] Like I said it's just been full-on, for 12 months it's been totally full-on, so I don’t have hardly any time to myself, but that’s good.’

Despite finding this fruitful solution to feeling tied down as a carer and the family home, and the way full involvement in a joint project with his mate had lifted his depression, Gus still distrusted ‘strong plans’, and accepted compromise was usually necessary in his life.

I've given up planning. I used to like planning, I spent a lot of time planning all these things but none of them ever worked out.

5.4 Era 4: Participants diagnosed in the biomedical era (2010 onwards)

The biomedical era began in 2010 as the results of the IPrEX (PrEP for gay men) study became available, and were reinforced by Treatment as Prevention for heterosexuals in 2011, TasP for gay men in 2014, and advice to start treatments as soon as possible after diagnosis from 2015; however, some clinicians and PLHIV had anticipated this and adopted treatment much earlier. All participants in the Era 4 (E4) group were recently diagnosed (i.e., after 2010) (see Table 9). Bruce was chosen to represent E4. He was in a long-term relationship with a woman50, and had always lived in rural or regional Queensland. He represented hope for the future as he was able to continue work uninterrupted after diagnosis. He quickly achieved an

50 Three-quarters of the E4 group had been in long-term relationship with a woman as well as having sex with men.

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undetectable viral load, but diagnosis had forced some acknowledgement of his decades of homosexual activity.

Table 9: Participants diagnosed in the biomedical era 2010 onwards. Descending age order (n=4).

Name Age Years Partner Own Work Comorbidities Relocation

HIV+ Home T1–T2

Dennis 70+ After Recent Yes Retired Heart condition Yes 2010 (late widower. diagnosis) Age related sight and joint problems.

Russell 60+ After Yes (a Yes Farmer Stroke related Yes 2010 woman memory and then DSP physical (possible divorced disability. late by T2) diagnosis) Depression

Suicidality

Phillip 50+ After - - DSP, Depression Yes 2010 Small Problem alcohol business use

Bruce 50+ After Yes (a Yes Yes Refusing - 2010 woman) depression medication

As soon as I heard I was positive I thought, well, I’ve got AIDS, how long have I got left […] I’m not going to tell people […] everything from then on was a blur for the first six months […] One of the things they asked when we first got diagnosed is did I have a will, which didn’t help in my thinking at the time.

At the first interview, Bruce was turning 50, making him one of the youngest non- Indigenous participants in the study. He had always lived in rural or regional Queensland. Despite his recent diagnosis and positive prognosis, Bruce was not connected to the gay community and had not been exposed to contemporary

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information about HIV (e.g., the ‘HIV is different now’ campaign). The death sentence scenario that people experienced in E1 and E2 still ran through his mind. He was haunted by images from the 1987 Grim Reaper campaign, the last public messaging he had been exposed to in his mid- teens before he became sexually active. He was in a long-term relationship with a woman he met in his early 20s; however, he had never disclosed his sexual relationships with men.

A couple of different beats […] I preferred the married men because no-one would say anything, they’d shut up […] a quick fix and it’s over […] However, it’s not over no more, I have HIV.

Bruce was diagnosed following a blood donation program that he participated in with his work colleagues.

If I come back negative, nobody’s going to know, and nobody’s got hurt. But because I’ve come back positive, it’s a different issue […] it comes back to me being selfish, I suppose.

Bruce commenced treatment immediately and quickly achieved an undetectable viral load. Connection with other PLHIV was critical to Bruce coming to terms with his diagnosis and understanding the complexities involved. Following conversations with HIV peers, he was reassured by the recommendation to start treatment as soon as possible to avoid the damage HIV does to various body systems when not suppressed. People diagnosed in E4, particularly those diagnosed early, may experience less disruption to their life course and health in comparison with those from E1 and E2 due to advances in HIV treatment.

Following diagnosis, Bruce disclosed his HIV status and his relationships with men to his long-term partner. They had not had sex since the diagnosis, and had never discussed PrEP (the partner could take to prevent acquiring HIV) or U=U (undetectable = untransmissible, a campaign designed to promote that PLHIV with an undetectable viral load will not transmit HIV others). He had continued seeing a few regular male partners, but this was not discussed with his partner.

She doesn't really know when it happens […] it’s just something we’ve never really talked about […] she seems to know when I’m lying so if you don't say anything, you don't lie.

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Bruce continued to work full time, providing some protection against the poverty experienced by many from the first generation who have lived on the DSP for an extended period. Like many in his cohort, Bruce owned his own home, which again provided some stability and was likely to ensure financial independence as he aged.

He described his commitment to routine, which included a strong adherence to his ART medication regimen. In addition to his HIV, Bruce worked with a psychologist to manage his mental health. At the point of diagnosis, he was referred to a psychologist by public health authorities to ‘come to terms with’ his homosexual activity and disclose of his status as required by law.

Full disclosure is what they look for and I haven’t committed to full disclosure.

After multiple sessions with the psychologist, Bruce was tentatively identifying as ‘gay more than bi’, but refused treatment for what the psychologist diagnosed as clinical depression. Due to concerns related to stigma and discrimination, Bruce has not disclosed his HIV status to his siblings as they are ‘homophobic’. He also expressed concerns about lack of confidentiality by a health care practitioner who he thought had disclosed his status, but living in a regional area limited his access to additional services.

I never liked him, I still don’t like him […] I’ve got no choice.

Bruce was conscious of the stigma that continued to surround HIV, despite the significant biomedical improvements that had been made.

[HIV is] still a taboo, probably will be forever […] As soon as you say HIV, everyone says, “No, you’ve got AIDS”.

Diagnosis led to many changes and challenges for Bruce as he negotiated disclosure, mental health and stigma. The uncertainties and challenges left Bruce feeling: ‘I just want things to slow down, everything’s going so fast at the moment. Life’s just going too quick […] At this stage of my life I don't really want too much.’

Although only in his early 50s, Bruce was aware that he needed to prepare for his retirement and for ageing.

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I am getting old to one degree […] I want it to be feasible. You’ve got to live on it [superannuation] for the rest of your life […] Getting close to retirement, I want to enjoy it because it’s going too quick.

5.5 Conclusions

Historical circumstances shape the life course so that participants within each era have shared similar experiences of the epidemic. However, the variety of lived experiences within and across cohorts also suggests the range of experiences, regardless of the era of diagnosis, adds important nuance to the cohort effect. Across all eras, there were people coping reasonably well with ageing with HIV, and others struggling to cope. This reflects Rai and colleagues 2015 UK study that explored the metanarrative of HIV as a chronic condition and how this varies by era of diagnosis. They found that ‘fears of the future were exacerbated […] due to some combination of HIV-related ill health, troubling comorbidities, mental health problems, domestic abuse or financial insecurity’ across all the historical eras (Rai et al. 2018, p. 1138).

There was great diversity in what individuals bought to the process of ageing with HIV across all the eras. Pre-existing disabilities and illnesses, financial security, relationship status, housing security, education level, genetic predisposition, and multiple minority identities were just some of the other factors affecting the life course that need to be explored. Given this diversity of experiences in each of the four eras, a person-centred, individualised approach to service delivery remains necessary regardless of the era diagnosis occurred. This is well illustrated by participants from E4 who, although perhaps not representative of people being diagnosed with HIV in the biomedical era, highlight the heterogeneity of experiences in the contemporary era. Access to early treatment, relative good health, and ongoing employment, make it more likely that newly diagnosed people will have good quality of life. However, despite immediate access to ART, the E4 participants had still experienced significant psychosocial challenges in their adjustment to living with HIV. Service providers need to prepare for the reality that PLHIV continue to face an intersection of social disadvantages and other health conditions that complicate living with HIV, even in the biomedical era. Service providers must also

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continue to prepare for the diverse needs of longer-term survivors who spent many years living with HIV without treatment.

While the point at which an HIV positive result was received by participants was when they consciously started living with HIV, they may actually have been living with HIV in their community, and in their body for years before having this confirmed by an antibody test. Although the cohort effect provides important insights into the life course of the participants in this study, other factors cut across the cohorts including living with the tensions arising from contradictory discourses (e.g., normalisation versus exceptionalism) that arose in the different eras, but remain active in the present even in the minds of clinicians (Persson et al. 2014). There is much to learn from what the participants have in common as well as the variety of their lived experiences. A major unifier of experience is that the stigma and discrimination associated with HIV continues despite biomedical progress which limits the normalisation of HIV as a disease like any other (Squire 2013; Walker 2019). Walker (2017, p. e9433) suggests that having to deal with unrelenting stigma is a ‘point of shared experience’ for PLHIV regardless of the vastly different circumstances present across the globe.

As ‘HIV continues to be fundamentally shaped by […] social and cultural practices’ (Walker 2017, e9433) the following chapters will explore in more detail the lived experience of participants in relation to the physical experiences of ageing with HIV, and psychosocial dynamics of ageing with HIV not solved by biomedical advances. The findings and discussion in the following chapters are focused on the themes generated through analysis of the interviews of all participants. However, throughout these chapters I have noted the eras in which participants were diagnosed (E1/E2/E3/E4) and flagged cohort effects as they are pertinent. I have also noted whether quotes are from the first (T1) or second (T2) interview.

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Chapter 6 Physical Health Experiences of Ageing with HIV

6.1 Introduction

This chapter will explore the lived experience of the physical aspects of ageing with HIV, while the next chapter, Chapter 7, will change focus to analysis of psychosocial issues. Together, Chapters 6 and 7 provide rich detail of people’s lived experiences of the complexities of ageing with HIV, and counter the assumption embedded in policy and service provision that treatment is all that is needed for PLHIV to ‘manage’, and to experience quality of life (Squire 2013, p. 32). Advances in HIV treatment have extended life expectancy of PLHIV, now measured in decades rather than single digits (Antiretroviral Therapy Cohort Collaboration 2008; May and Ingle 2011). This has opened an opportunity for PLHIV to focus on quality of life. These chapters identify issues that were important to participants as they age, and explores how they have adjusted to cope with increasingly complexity.

The notion that ART offered a ‘breathing space’ was cautiously suggested by Michael Hurley soon after the treatment breakthrough in 1996 (Hurley 1997). As it became clearer that effective HIV treatment could be sustained over the long-term, HIV began to be characterised as a manageable chronic condition. However, in common with other chronic illnesses HIV intrudes on daily living and can be difficult to keep in the background of life (Charmaz 1991). Unlike most other chronic illnesses HIV has a heavy burden of stigma requiring constant vigilance for self- protection, making it all but impossible to put awareness of HIV status into the background of daily life (Squire 2013). A need for constant vigilance has also been associated with the need to conceal homosexuality, and for gay men acquiring HIV exacerbates the investment of emotional energy into managing what Meyer called minority stress (Meyer 2019). Squire has argued it is necessary to take account of the exceptional circumstances of living with HIV, its particularity, to fully appreciate the ways PLHIV are adapting to their context (Squire 2013).

All participants in this study were on ART and most had a stable undetectable viral load indicating effective suppression of HIV. However, health had not been fully restored by treatment as reservoirs of HIV remained active in the body despite viral

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suppression (Deeks et al. 2013). These reservoirs drive inflammation associated with ‘neurocognitive disorders, cardiovascular diseases, metabolic syndrome, bone abnormalities and non‐HIV‐associated cancers’ (Nasi et al. 2017, p. 44). Participants were dealing with a broad array of physical health issues and associated comorbid conditions which have been described as constituting both accelerated and accentuated ageing (Pathai et al. 2014, Karpiak and Havlik 2017). The complexity of living with multiple comorbidities highlighted the limitations of neoliberal notions of individual responsibility (Squires, 2013: 152), particularly when participants struggled with logistics due to depression and cognitive decline.

Many participants had moved away from the busy pace of the gay communities of capital cities to breathe easier in rural or regional Queensland, convinced this was a healthier lifestyle as well as more affordable when managing on a fixed limited income. Healing and wellbeing can be associated with particular places, what the health geographer Gesler termed ‘therapeutic landscapes’ in 1992 (Bell 2018, p. 123). The seeking of the healing qualities of place has driven much of the sea change and tree change orientated migration of PLHIV to regional Queensland (Jansson and Wilson 2012). However, place can also be associated with trauma and exclusion and lead to relocation in search of a place to fit in and be fit physically (Bell et al, 2018; Griffith 2018).

This chapter will explore how participants were responding as the burden of comorbidities and disabilities accumulated with time and ageing, requiring adjustments to find and live within new limits and to reframe their relationship with impairments. Early in the epidemic, PLHIV invested time in being well informed about options for the best management of their HIV, but modern ART had stabilised management of HIV, providing an opportunity for participants to change their approach and rely more on advice from their primary health care provider. The time this potentially frees up could be focused on quality of life beyond immediate HIV concerns. However, as comorbidities increase with ageing, the focus of daily life could narrow again onto the cumulative effects of the physical complications in interaction with the usual complexities of ageing. Cognitive decline was a key concern for participants, not only because it could eventually limit functional capacity for self-care, but also because memory goes to the fundamentals of identity and dignity (van Gennip et al. 2016).

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In this chapter, participants’ perceptions of access to services to support independent living given changes to government policies and support services in regional Queensland will be reflected on, particularly the sense of uncertainty about self-management of HIV and comorbidities as individuals age.

6.2 ‘Wearing out sooner’: disability51 and comorbidities accumulate with ageing

Participants were keenly aware HIV was taking a physical toll on their body so that they could be ‘wearing out sooner’ (Warren, E2) than HIV-negative peers. As Warren (E2) shared:

I’ve always had a belief that I’d probably wear out sooner because of the HIV and what it’s doing to the immune system. So when I noticed these old men signs […] it does sort of freak me out a little bit and hyper vigilance is probably not the [ … ] I’m a bit scared that I’m going to make myself old before my time by thinking I am old […] I am positioning myself as if I was 65, not 55 (Warren, E2, T1).

Because of his belief that he would ‘wear out sooner’, Warren worked part time and planned for early retirement and how he could co-locate with a group of friends in old age for day-to-day practical mutual support. However, such specific planning for old age was rare among the participants. Most hoped to carry on in a reactive way making the best of each situation as circumstances changed. In the past this was a functional response in the face of uncertainty given the predicted limited life expectancy, the rapidly changing circumstances as the epidemic evolved, and a need to stay positive and keep hope alive (Sowell et al. 2009). However, it has left many under-prepared for ageing. Neil made it clear his was a common experience.

I was of the generation where you were diagnosed and they organised to put you on the DSP. You were told to cash in your

51 The UN Convention on the Rights of Persons with Disabilities draws a distinction between ‘impairment’ and ‘disability’. Disability results ‘from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation’ (United Nations, 2007, Preamble (e), p. 2).

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super and if you wanted to go overseas, go overseas now while you could and then you stuffed it all up and stayed alive. So it’s not something I consciously think of or worry about […] negative thinking as far as I’m concerned. So it’s not something I dwell upon or spend a lot of time on (Neil, E1, T1).

Few participants invested energy into imagining the future. Angus, with some insider experience of the health care sector, discussed the need to support PLHIV to become better informed about ageing and their options, and to imaginatively engage with the process.

There should be the concentration on the aging process because it affects people in all different ways and perhaps trying to capture people’s imagination on how they can deal with it more […] so many people are quite clueless in that regard (Angus, E2, T1).

The physical challenges faced by participants have changed across time as HIV treatment evolved (Table 10).

Table 10: Changing profile of effects of treatment as treatment evolved.

Time Stage of treatment Effects evolution

Era 1 No treatment for HIV  Preparation for an early death – palliative care. Some treatment of  Periods of severe illness and hospital opportunistic infections care.  Interest in complementary therapies.

Era 2 Experimental drug trials  Some trial participants kept alive but trapped in a poor quality of life, facing Prophylaxis for PCP chemotherapy and supplementary feeding to counteract wasting.

 Nausea and difficulty eating.  A legacy of damaging side-effects for survivors (e.g., peripheral neuropathy).  For some, lasting ambivalence about all anti-retroviral drugs and difficulty trusting doctors.

Era 3 ART breakthrough.  Recommendation to delay starting treatment as long as possible. Lifelong treatment likely to

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be needed.  Fears treatment options would be depleted as resistance emerged.  Reduced side-effects as ART refined.

Late Polypharmacy as  Some adherence fatigue as number of Era 3 comorbidities increased pills and complexity of regimes increased.

Era 4 90-90-90  Recommended to start treatment as soon as practical after sero-conversion.  Efforts to combine drugs to decrease pill burden and long acting methods of delivery (e.g., monthly injections).

Future Cure  Not expected in their lifetime.  Functional remission a more realistic goal.

The contemporary HIV era, with capacity to suppress the virus and live with an undetectable viral load was much appreciated by the participants. However, even with an undetectable viral load, most participants experienced complex physical health issues related to living on with HIV. As outlined in the literature review in Chapter 2, even the most successful HIV treatment does not fully restore health and the ‘cumulative exposure to antiretroviral drugs and/or chronic inflammation is expected to have profound effects on health and ageing (Deeks et al. 2013, p. 1526). Participants often had a detailed awareness of what the research literature was suggesting, such as ‘premature ageing’ leading to comorbidities 10–15 years ahead of HIV negative peers. Lived experience confirmed to participants that physical health challenges were accumulating, setting up a great deal of ambivalence about the implications. Elevated morbidity burden was accepted as part of living with HIV, but contemplation of how this could interact with ageing into their own future was usually avoided.

The physical impairments reported by participants E1–E4 are summarised in Table 11.

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Table 11: Impairments reported by participants, by era diagnosed with HIV. Excludes mental health (n=17).

Era 1 Era 2 Era 3 Era 4

PTSD and Arthritis and Memory Cardiovascular memory memory Osteoporosis ABI - cognitive and Physical52 Neuropathy physical Memory Physical Arthritis ABI – cognitive Physical and physical

ABI - cognitive Neuropathy and memory Memory Physical Memory

Thus, living on with HIV was a high maintenance prospect amounting to what Greg (E1) described as ‘a full-time occupation’. Considerable energy was invested in maintaining everyday functionality. While most participants were very diligent about self-care, visiting health care professionals frequently, and maintaining physical exercise and rest regimes, the need to manage chronic pain and impairments was commonly recounted. Despite the difficulties, many participants demonstrated remarkable determination to survive, and keep their physical health challenges in perspective. However, the lived experiences of the participants in this study strongly suggest that the notion that ‘HIV is different now’, and expectations of near normal life expectancy, should not be interpreted as meaning that living with HIV is now easy. Those participants experiencing a poor quality of life were overwhelmed by

52 Specifying the exact physical disabilities would be too identifying.

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their complex comorbid conditions, such that there were ‘no good days anymore’ (Duncan, E1) and they would be content to ‘just not wake up’ (Jared, E3).

Disability had been a feature of life for many years for most participants. The ABS definition of disability is ‘any limitation, restriction or impairment which restricts everyday activities and has lasted, or is likely to last, for at least six months’ (ABS 2015, paragraph 7). The UN Convention on the Rights of Persons with Disabilities draws a distinction between ‘impairment’ and ‘disability’. Disability results ‘from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation’ (United Nations, 2007, Preamble (e), p. 2). The social model of disability provides an analysis that values resistance the impact of social oppression on the daily lives of people with an impairment. In essence, it is negative social attitudes and responses that create the barriers that turn an impairment into a disability (Oliver 2013), although removing barriers does not remove the experience of impairment, which can involve pain and suffering (Shakespeare and Watson 2001). Impairment and disability were raised as an aspect of the physical lived experiences of participants in this study in four ways, which are outlined below:

6.2.1 Pre-existing disability

Some participants had physical impairments prior to acquiring HIV. Six participants indicated they had a physical disability prior to acquiring HIV and this added to the complexity to the process of ageing with HIV. Pain management was a constant challenge related to these conditions, which had a deleterious effect on quality of life. For example, for Andrew, pain interfered with his ability to form a relationship, and even his sexual practices.

You just wake up the next morning and you're in agony, just because you were cuddling someone that night […] who wants to be with someone that's positive and basically half a cripple, sexual positions, it's hard. If someone wants to put your legs up over their shoulders, I could be sore for a month (Andrew, E3, T2).

For Dominic, pain was a constant reminder of the traumatic circumstances in which his disability was acquired, and the way this continued to limit work opportunities.

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Pastor was chasing me around the children's home with a baseball bat and he hit me at that point and my back has been fucked ever since. And I was 14 and he maybe he fractured it and it didn't grow properly […] needs to be operated on (Dominic, E1, T2).

6.1.1 DSP Eligibility

Most participants had long been eligible for the DSP due to the impact of HIV on their physical and mental wellbeing. The relationship between DSP and work is explored in Chapter 7. Eligibility for DSP enabled day-to-day survival and management of fatigue, but over the long term resulted in financial precarity and lack of options in preparing for old age or even the ability to use savings to solve problems that arise in daily living. Limited finances constrained investment in physical care and wellbeing strategies. For example, Andrew paid a large amount for an operation to reduce his pain levels, but it did not solve the problem. He needed another operation but could not afford the large out-of-pocket expenses despite having top cover health insurance.

I don't want to have to go in for this and have another […] bill and he said “No, no, no we’ll waive this […] and we’ll cap the […] bill” […] So in the end it only cost me $1,000 so that was alright, I could cope with that (Andrew, E3, T1).

Participants engaged in part-time work faced health care constraints, as they do not have a health care card to bring down costs. Warren could not afford to see a GP/s100 prescriber with a high gay/PLHIV case load as he could not afford the gap fee.

I don’t know what’s happening and that’s probably one of the more worrying things of living out here is the difficulty of trying to find someone who can actually support you as you get older, more complexities around an illness […] I don’t really want to go and see a gay ghetto GP, A, they cost a fortune and B, they’re fully booked […] I just want someone that I can have a clinical relationship with and that’s being denied me at this point in time (Warren, E2, T1).

6.1.2 Treatment side-effects legacy

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An array of conditions related to the effects of HIV before treatment was available, including damage done by participation in experimental drug trials, and side-effects of ART. Impacts of early medication continued even with modern, more effective treatments to accentuate the ageing process, including increased levels of frailty (Brothers and Rockwood, 2019). This meant participants faced disability earlier in the ageing process than their HIV-negative peers.

Stuart (E1) had a permanent physical impairment arising from a poorly diagnosed and incorrectly treated rare, opportunistic infection. As he got older this made him an easy target for physical violence in the location where he lived, leaving him no option but to take a stand in dangerous situations.

I’ve got too many things […] that could put me at risk. I’m older […] I can’t run […] I’ve got to stand up and take whatever fucking happens (Stuart, E1, T1).

New physical problems continued to arise from HIV and treatment side-effects, and osteoporosis, which can be a significant contributor to frailty and disability (Ofotokun and Weitzmann 2010; Mallon 2014). Xavier (E3) was intent on ‘staving off’ the impact of any early onset emerging conditions.

I’ve been diagnosed with osteoporosis so […] My doctor’s […] advised me to join a gym and do weight-bearing exercises to try and keep my bones strong […] I’m trying to stave it off from getting even worse (Xavier, E3, T2).

6.1.3 Cognitive impairment

Most participants were concerned about HAND. Cognitive damage may continue with treatment as the central nervous system remains a reservoir of HIV infection as ART does not effectively cross the blood-brain barrier (Brew 2010), and there are indications that development of frailty may predict cognitive decline (Paolillo et al. 2019). At least 10 participants were experiencing memory or cognitive problems, but attributing this to HIV was complicated in four cases by concurrent Acquired Brain Injury (ABI), and in general by mental health concerns, such as depression and anxiety, which can also affect memory (Alford et al. 2019). Although there are indications that it may be possible to reverse a diagnosis of HAND (Vance et al.

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2019), none of the participants were involved in any cognitive training programme. Memory issues will be addressed further in section 6.4.

In addition to disabilities, participants often lived with health conditions that needed active management, impacted functioning in daily life, and had serious implications for quality of life. Each comorbidity added another layer of complexity. The effective treatment of HIV had opened up comparison with the intrusiveness of comorbidities that are often less responsive to biomedical management than HIV, and can be life threatening.

I had some things cut off my bottom […] and then they found out I had Hodgkin’s lymphoma and chances of survival were pretty slim being HIV positive and Hep C as well (Lewis, E1, T1).

Management of HIV was often compared favourably with type 2 diabetes. Dominic believed diabetes required much more difficult, day-to-day monitoring, so he preferred living with HIV.

I’d rather have HIV than type 2 diabetes and that’s what people are forgetting (Dominic, E1, T2)

Many participants lived with HIV and comorbid conditions, managing complex health issues and associated services. Rory (E3) had completed ‘tough’ Hepatitis C treatment which left him feeling ‘a bit distanced from myself […] for a few months’ (T2). Jared (E3) experienced adverse interaction between his HIV antiretroviral medication and diabetes maintenance, and a forced compromise between the two left his diabetes uncontrolled. Constant monitoring and treating of the diabetes structured much of his day, and fear of acquiring any injury limited his mobility so much he rarely left his room.

They suspected that the HIV medication that I’m on is the cause of my diabetes being out of control […] they got in contact with the HIV doctor (to) change my medication […] can’t […] the medication I’m on now is the last lot of (HIV) medication I can take (Jared, E3, T1).

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Jared had a number of other comorbidities as well, and the doctors could not clearly define causes and effectively manage the interactions between the conditions and treatments, creating a sometimes overwhelming burden of uncertainty.

It just piles on you […] if you’ve got one illness, you could probably overcome that but when you’ve got so many different ones and they can’t tell you what’s causing it, it’s even worse (Jared, E3, T1).

Pain management could also lead to adverse drug interactions. Andrew (E3) had been changing HIV treatments to accommodate pain relief medication.

We were swapping and changing […] at this stage the regime is working okay [ … ] I’ve had to stop all anti-inflammatories because my liver was going through the roof […] it would be different if I was on just HIV meds because there’s no issue with those whatsoever (Andrew, E3, T1).

Polypharmacy, the concurrent use of multiple medications, sometimes led to poor quality of life. Clayton (E3) had multiple conditions which meant he ‘was on about 36 pills a day at one stage’ prompting him to conclude ‘the cure was worse than the illness’ (T1). However, the complex management of comorbidities could also put the biomedical management of HIV itself into perspective. Comparison provided some perspective that freed Phillip to focus on ‘meaningful (goals) that contribute to society’.

It’s not the worst thing that could happen […] there are people who are worse off […] I consider myself lucky (Phillip, E4, T1).

Given his mental health challenges, being able to minimise HIV in this way opened up enthusiasm for life. However, clarifying and managing the physical symptoms associated with HIV and various comorbidities was not straightforward for many, and there was complaint that even doctors tended to over attribute everything else to HIV, even comorbidities that existed before HIV was acquired.

People think that because of the HIV, all these other illnesses are related to it, but they’re not, they’re all completely different to HIV […] the (other conditions) happened way before I even had HIV (Jared, E3, T1).

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Changes in one comorbidity could disrupt a delicate balance and set back overall health. At interview one, Marshall was optimistic, feeling he was getting on top of his depression. By interview two he was ‘really pessimistic’.

The year has been […] really difficult and it’s mainly because of fatigue… my heart condition became really intrusive […] wildly arrhythmic heartbeat, it feels like I’ve got a dying fish flopping around in my chest. It’s incredibly unpleasant but it’s also quite scary […] it feels like it’s going to stop (Marshall, E2, T2).

For Marshall, there was a strong link between his physical conditions and mental health, as his panic attacks and heart condition emerged together, and he found ‘beta blockers are incredibly taxing’ (T2). This taxing exacerbated his fatigue problems, which in turn made it difficult to exercise and keep his depression in check, which undermined mental acuity.

6.3 ‘Can’t remember a flaming thing’: Cognitive decline

Of particular concern to participants when contemplating ‘where will I end up?’ (Rory, E3, T1) was the effect of HIV on cognitive functioning despite a sustained undetectable viral load (Singer and Nemanim 2017). Marshall (E2, T2) called this ‘CRAFTS, Can’t Remember a Flaming Thing’. The difficulty cognitive decline and memory problems presented for independent self-care, including co-ordination of the management of multiple complex comorbidities and adherence to multi-drug regimens, loomed large as a concern about the ageing process. About half the participants mentioned issues with memory loss during the interviews, often as the ‘only’ or ‘main’ concern they had. For example, Tyson (E1) spoke about memory loss, but put this in the context of a general decline he was confronting even though he was not yet 60 years of age.

My main complaint is memory loss. I know I’ve lost taste and smell. I’m virtually impotent, but that’s probably […] from the lymphoma […] My skin, I’m sensitive to the sun […] I don’t know if that’s ageing or whatever it is. I’ve got to be very careful what I eat [...] I just see the general decline basically […] I just go, yeah, whatever (Tyson, E1, T1).

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In addition, memory problems undermined social confidence and contributed to depression:

[…] god my memory is so bad […] I’m waffling again aren’t I? (Marshall, E2,T2).

I can’t think. Just that the brain goes a bit blank a lot now, especially when I’m not, when people are talking [...] often I’ll sit there and just it all just fly by now (Gus, E3, T1).

Memory problems were a charged issue given the subjective sense of ‘who I am’, or identity is largely constructed from memories to produce ‘a sense of sameness over time and space’ (Gillis 1994, p. 3). For older participants, a degree of memory loss was accepted as part of normal ageing but also provoked anxiety given the unknown contribution of HIV to the speed and extend of the loss.

Well I worry that my mind might be ageing sort of thing, you know, I’m starting to forget things these days. That’s the only worry (Walter, E2, T2).

Participants shared strategies they had developed to cope with memory loss. A common strategy was leaving pills on the table where meals were eaten to prompt adherence. However, many were deeply concerned about a premature slowing of cognition and the impact on identity. For Marshall, that identity had included pride in intellectual facility.

Either the meds or the HIV itself has now really begun to affect memory and cognition and just the speed and pace with which I’m able to think and do stuff […] Anything […] cognitive […] is slow. That contributes to me feeling really down and it’s hard to go from someone who had very good intellectual facility to someone who feels very compromised (Marshall, E2, T1).

The gap between past and current functioning amounted to a major loss many were having to adapt to, including foregoing activities that were important and enjoyable in their younger years. Duncan recalled how good his memory was when he was

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sexually active and regularly going to gay bars, something that decreased when he gave up drinking.

When I was younger I used to be able to remember people’s phone numbers […] chatting somebody up and they’d give me their phone number and […] I’d remember it but I couldn't do it now (Duncan, E1, T2).

Many described the challenge to find satisfying replacement activities.

I read a lot, watch TV and play cards on the computer. I don’t like going out a lot […] to the library one a fortnight […] I usually watch Deal or No Deal at 5 o’clock (Walter, E2, T2).

Jared (E3) had severe short-term memory problems, but as part of a strategy to ‘just take each day as it comes and enjoy the life I’ve got. That’s the best way of looking at it.’ (T1), he choose to look on the bright side that this enabled him to continuously enjoy his favourite book without getting sick of it.

I can read a book 12 times and I won’t remember it after I’ve read it […] each time it’s like brand new to me […] I used to be really good at puzzles, now I can’t do them […] I can’t play chess anymore because I just can’t work out the moves like I used to in my head (Jared, E3, T1).

Participants described the efforts they made to hold on to important memories. Both Duncan and Russell (E4) had developed visual aides-memoires including dated photographs to prompt recall. For Duncan, one of these was a set of framed photographs of his past much loved pets, with their names and the dates he acquired the pet and when the pet died. The development of recall gaps and loss of memory had been a gradual process for most participants, which provided time to adjust to the loss, but could also mean losses were overlooked or minimised in day- to-day awareness. Russell suffered a stroke pre-HIV requiring extended rehabilitation to regain functions, and the impact on his memory and his coping strategies have some elements in common with HIV-related cognitive decline. Russell took many years to acknowledge and come to terms with the sudden severe

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memory loss and recall problems. A profound observation arose from reflection on the first interview about the impact of the stroke on his cognition, and the way talking with another person was a way of reconstructing the past and achieving a sense of cohesion.

It’s only through speaking about it in a linear fashion that I can recall what I’ve been up to because usually anything beyond an hour ago doesn't really stay in my memory […] I remember when you left here last time a feeling of almost elation and I was puzzled about why this is. While I quite enjoyed your company […] that’s not enough for that height of this elation, and I decided to put it down to the benefits of having reconstructed my past year through your questions. That gives me a sense of having had a past, which is a very spooky feeling to live your life with this sense that your life started this morning when you got out of bed, didn't exist before then (Russell, E4, T2).

Russell was affronted by the lack of social consideration for his impairment, especially given the important role that ethical standards and integrity played in his sense of identity and relationships. He felt this was more pronounced because cognitive conditions are not as visible or accepted as legitimate.

My memory problem was a big hurdle to get over. Despite the notebooks and tape recorders that I used to help (Russell, E4, T1).

I’m sick to the back teeth of what I consider insensitivity […] they still have the temerity to rag me about it […] But our community […] have a very odd attitude towards mental health issues (Russell, E4, T2).

Two other participants also had ABI, and were very concerned about how this could interact with the potential for HIV-related neurological decline. For Rory, the gay

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bashing53 that led to his ABI left him struggling to deal with trauma and the loss of function, skills and profession, and like Russell an altered relationship with time.

I don't have much long-term vision in anything. I always put it down to the brain injury but I can’t plan for holidays (Rory, E3, T1).

If HAND becomes more pronounced for some long-term HIV survivors they may also begin to experience what Russell (E4, T2) described as this ‘spooky’ sense of living with ‘no past, no future’, but so far a gradual decline enabled adaptation as practical problems arose.

Gaps in memory, and strategies to manage these to maintain independence were a daily reality for many long-term survivors. Jared (E3) was at this stage of major impairment, and had a carer living upstairs.

I can remember certain things […] I’ve got to write everything in a diary. If I don’t do that I forget things like doctor’s appointments, something like Blue Care coming to see me (Jared, E3, T1).

By T2, Jared was wearing a tag when he went out on his scooter in case he got lost, but his quest to remain as independent as possible was undaunted.

My memory isn’t right […] There have been a couple of times when I’ve gone on my scooter down to the doctor, on the way home I took a wrong turn and got lost (Jared, E3, T2).

Felix (E3) was ‘born with mild brain damage’ (T1), and while he had some good social skills he also needed regular support to keep his life from unravelling. His day- to-day existence was slightly chaotic, and he recently lost $7,000 worth of health equipment. He had experienced three treatment failure events due to poor adherence, and doctors were ‘running out of [treatment] options’ (T2). Felix was convinced this meant his doses were stronger and so caused more side-effects, adding to ambivalence about adherence. With closure of PD, case management

53 There has been increasing attention drawn to the wave of bashings of gay men and anti-gay hate crimes, including murders, that occurred in Sydney between 1985–2000. Estimates of the number of unsolved murders range from 46 to 70 (Pollard, 2013).

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support transferred to an Aboriginal Health Unit and an NGO where he volunteered often to help others who also experienced sexual abuse and exploitation. This involvement helped him to be ‘getting back on the [treatment] wagon. It’s stronger and I’ve got to learn…’ (T2), but his capacity for learning was impaired and his coping capacity was overwhelmed by emotional issues, as he still grieved the loss of a partner of 15 years to AIDS and had the feeling he was the ‘sole survivor’ of his social network.

Even for participants with no symptoms of cognitive decline, the issue was bought to awareness by psychologists testing to establish a baseline for monitoring cognitive health over time.

I went to see the psychologist […] and she reckoned I passed with flying colours […] you always think, am I going downhill in that direction or not and to know that I wasn’t, that was quite good (Angus, E2, T1).

An advantage of interacting with psychologists was increased awareness of the need to proactively maintain cognitive health, mostly in the form of mental and social stimulation. For many participants this built on a history of volunteer involvement in the community response to HIV, turning a familiar strategy into an important contribution to ageing well.

I’ve already realised I’ve got to start getting back into volunteering or doing something out there. I’m part of a senior’s visiting program and doing that helps. But I think the cerebral challenge works for the wellbeing of myself at the same time (Warren, E2, T1).

Given the uncertainties of living with HIV and being on guard to protect against stigma and discrimination, participants often had to actively manage their stress levels to not be overwhelmed. Stress and anxiety can negatively impact cognition (Vance et al. 2012; Singer and Nemanim 2017; Clifford et al. 2017), and this highlights the importance of mental health being proactively addressed as a part of primary health care provision, rather than relying on expensive specialist interventions.

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I get these memory lapses and that’s also to do with anxiety […] So I’m actually under a psychiatrist for anxiety as well (Xavier, E3, T2).

There is some evidence to suggest overdiagnosis of HAND and mismanagement of symptoms (Alford et al. 2019). A specialist clinic in the UK reassessed 52 patients who had met the usual (Frascati) criteria before referral to the clinic, but found that with more sophisticated assessment, 27% actually had cognitive impairment due to a secondary mental health issue rather than HAND, and therefore needed assistance to instead address depression, anxiety, problem alcohol and other drug use or poor sleep (Alford et al. 2019). Regardless of the cause, participants in this study focused on how memory problems were already impinging on day-to-day functioning or could do so in the future.

When I was starting to lose the plot a bit I actually asked if they thought it was like early dementia […] but just talking with my doctors now they think it’s more anxiety and stress and if I can manage that then that will be good (Luke, E3, T1).

On top of their own cognitive issues, some participants were also carers witnessing their partners’ condition decline and mood swings. This was additionally stressful as a constant reminder of their own possible fate. In Marco’s case, his partner was older making it likely Marco would not have this partner’s support when ageing with HIV.

[Partner]’s having like mood swings and things like that, and he might sort of just get sort of vocal […] I’ll just go down and sit down [outside] for about an hour or so […] and he’d be sorry [...] My biggest fear is he might be getting Alzheimer’s or something (Marco, E1, T2).

Some participants used humour to maintain a positive outlook to face impairment and developed relationships where the condition was accepted and supportively co- managed, in this case by a friend who lives with an ABI.

I get chatty and then I seem to lose track […] I talk away from the point I was trying to make and he says ‘now what was all that about’ and I go ‘I've forgotten, doesn't matter’ […] He's 28 years younger

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than me and he says ‘it must be old age’ and I said ‘yes don't worry, in 10 years' time you'll be doing the same’ and he laughs (Tyson, E1, T2).

Moving to a regional area and limiting social contact was a strategy used by participants to limit demands on cognitive processing, given their capacity to manage daily tasks and problem solving was easily overloaded. Marshall described his need to lead a ‘circumscribed life’ (T1) despite considering himself stronger than most people.

Every day was just an Everest in a way and so the less there was, the better. Then I could manage it. And that’s what it’s been like […] the only way to manage was to do this, a very circumscribed life […] I believe I’m stronger than most. Being HIV is probably the simplest part of my life. Every day is a struggle (Marshall, E2, T1).

Given the high rate at which memory issues were impinging on everyday life, and the potential for the range of comorbidities and ageing to interact and exacerbate HAND, it should not be surprising that the implications of cognitive decline featured so strongly in the lived experience of PLHIV, and presented as a key major concern about the future as they age.

HAND, consisting of a range of neurocognitive, motor and behavioural deficits, is lessened by ART but treatment does not stop the impact of HIV beyond the blood- brain barrier. The impact of HIV on the central nervous system is of particular concern with a history of a low CD4 count when they started treatment, which was the circumstance of most of the participants in this study. There is evidence that despite viral suppression, inflammation is not adequately controlled, which leaves the brain at risk for progressive injury (Clifford et al. 2017). In addition, comorbidities that can contribute to brain injury including treatment side-effects, Hepatitis C, drug use and cardiovascular disease, and even normal ageing, may combine to exacerbate HAND (Singer and Nemanim 2017).

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6.4 Finding and living within new limits

The strong physiological impact of HIV and treatments meant most participants in this study were very focused on their body, intensifying struggles over the care of the self to resist the impacts of ageing on their body (Gilleard and Higgs 2014). There was strong concern from participants that the demands made on their body may be cumulative and add to the challenges of ageing. Sometimes old injuries returned as a challenge, prompting a need to adjust and live within new limits rather than push too hard to avoid a decline in fitness. An example of adjustment to a new limit was illustrated by Jay who had been swimming 1,500 metres a day.

I dislocated my shoulder 30 odd years ago […] it was starting to act up quite a bit. So my GP sent me to a physiotherapist […] I pointed out around 1,200 is when the niggle starts. He said to me, ‘Well, why don't you stop at a kilometre, then?’ Oh, I had so many reasons […] he said, ‘Why don't you try it?’ I went in the next week and he said, ‘How's your shoulder?’ I said, ‘It hasn't been bothering me [laughing]’. I swim a kilometre a day every day (Jay, E2, T2).

Jay’s ‘many reasons’ cue the stakes for PLHV invested in a strategy of maintaining a high level of fitness as key to long-term health and wellbeing, including avoidance of frailty. A reset can signal a decline, an ominous resonance with the declining t-cells in the AIDS-crisis years that left people with below 200 t-cells vulnerable to life- threatening opportunistic infections.

Finding the limits, and experimenting to find what treatments or strategies work, took time and used up limited financial resources. Walter’s (E2) management of arthritis involved constant monitoring of his body to achieve an ever-shifting balance between rest and activity. Spending around $1 a day from his pension on capsules that he believed helped ‘some days’ (T2) indicated how important maximising functionality was for him. He had to keep moving to maintain flexibility, but also had to be careful not overdo it and at times use his mobility scooter instead. The appropriate level of activity was a daily assessment.

Well sometimes I make myself walk. But sometimes I don’t feel like walking. So it’s easier to hop on that [mobility scooter] than risk

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overdoing it, and end up feeling rat-shit the next day (Walter, E2, T2).

Some limitations were so severe that they were a constant reminder that death was close. Jared (E3) had lived with breathing problems for over 20 years and had long ago come to terms with death.

I can’t take deep breaths in and relax […] even walking 100 metres, I had to sit down two or three times because I get breathless. But, like I said, if you’re going to die, you’re going to die (Jared, E3, T1).

A particularly intrusive, largely uncontrollable issue for many participants in this study was chronic pain. Pain has previously been identified as more common among older PLHIV than younger PLHIV, undermining quality of life and increasing demand for health care services (Sabin et al. 2018). Even with careful management, the limit of endurance could be repeatedly tested and exceeded. The unbearable pain levels Andrew (E3) was experiencing meant that he was clear he would welcome death as an end to the pain.

At the moment I’m going through pain clinic […] because I’m not dealing with it […] it’s been worse and I don't understand why. It’s to the point where […] I would be very happy if I just didn’t wake up […] It’s unbearable (Andrew, E3, T1).

By T2, Andrew had relocated to a new residence which needed alterations to make it safe given his impairments. He had the skills to tackle such work, and as he did not have the money to pay someone else to do it, he repeatedly pushed the limits and tried to do it himself.

I can't do much […] it kills me for days […] But I can't afford to pay people to do it, that's the problem. I've invested everything I have into this […] All I've got is my fortnight to fortnight pay, which doesn't leave a lot once you take out all your bills (Andrew, E3, T2).

Adjusting to living within his limitations was a constant frustration for him and made him very conscious of the lack of support available from others.

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If I wasn't so disabled I could do it quite easily […] if I could just get someone to help me […] a bit I'd be right, I'd get it all done (Andrew, E3, T2).

When limits were accepted and worked with this can feel very right, adding to a sense of managing well given the constraints. Clayton (E3) drew on a past competence as a musician, keeping it simple by working within his limited dexterity, to help him get on track psychologically.

I took my guitar out for the first time in about five years and strummed a few chords in the back yard and that felt good […] I can't make the chord shapes for any length because of the stiffness of the fingers, but fortunately Dylan wrote 100 songs with only three chords and I've written about a dozen, so I just revisit those easy chords and just strum away until I can't strum it anymore […] I'm getting back on track (Clayton, E3,T2).

In a critique of patient empowerment, Aujoulat and colleagues (2008) focused on the potential for disruption of identity and described the tension between ‘holding on’ and ‘letting go’ as personal transformation occurs in response to living with chronic illness. Holding on involves maintaining identity by distinguishing the self from the illness and continuing normal activity as much as possible, while letting go entails being reconciled with the unavoidable changes imposed by the condition. There are many subtle processes and individual variations involved in adjusting to living with chronic illnesses (Audjoulat et al. 2008; Whittemore and Dixon 2008). Charmaz (1991) found such adjustment impacted construction of time as well as sense of identity.

6.5 Evolving patterns of self-care with the clinician as partner and ally

The relationships with s100 prescribers, and to a large extent GPs where they were involved, ranged across a wide continuum with five main approaches as outlined in Table 12. These ranged from self-reliance to partnership, but also a shift in practice for some towards making a conscious choice to take advantage of the stability achieved in the biomedical era by relying more on their s100 prescriber and GP to provide well-informed medical advice. Another driver of increased reliance was the emergence of comorbidities, requiring the input of multiple specialists. This added

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new levels of technical complexity and the need for co-ordination and collaboration between clinicians, or what has become known as ‘shared care’ which involves far more planning than just providing routine referrals (ASHM 2015).

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Table 12: Range of relationship types between PLHIV, s100 providers and GPs

Relationship Description Type

Self-reliance Participants diagnosed in the AIDS-crisis era experienced doctors having limited tools to manage HIV, and some developed a strong practice of self-reliance54. Use of complementary therapies such as Reiki, meditation, and vitamins to promote wellbeing developed during the AIDS-crisis and many continued to combine these with the much-improved treatment available in E4.

Resentment Some complained about the burden of compliance with doctor’s instructions. Daily treatment regimens could be high-maintenance and consume a good deal of time. As energy levels decreased with illness, ‘doing what told’ by the doctor was resented as they became ‘sick of it’ as part of ‘not getting any joy out of anything’ in daily living (Duncan55 E1).

Relinquishing decision making in a passive approach to health Traditional care providers. This extended to carrying out routines ‘to keep the doctor happy’ (Jared E3) even when prescriptions were judged to not be working. Experts by experience in a partnership with their health care Partnership providers, and even educating and updating clinicians. This fundamental shift away from paternalistic medical practice developed from the beginning of the epidemic. Empowerment, through being well informed about research literature, was a high priority of the PLHIV movement from early in the epidemic via treatment literacy publications56. Relying more on their doctor, and freeing up time by not investing Post- in staying on top of HIV-related research. While shifting to partnership becoming a consumer of services expectations of clinicians were

54 Jay (E2) was sceptical of the competence of his local clinician replying, ‘Are you joking?’ when asked about relying on their advice when making decisions about managing his HIV. He attended a pathology centre to get blood tests done and accessed the results via the sexual health s100 prescriber for monitoring purposes only. He assessed his own results and relied on a personal network of experts if he needed advice.

55 Duncan was planning to disengage with the Psychiatrist he was referred to because of adherence issues, possibly taking him one step closer to ‘getting out of here [suicide]’ (T2).

56 Positive Living, the flagship publication of NAPWHA (Poulton et al. 2013), and the quarterly publication QPP Alive in the Queensland context.

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high, including the need to provide detailed rationale for treatment and care recommendations. Participants sought to push HIV into the background of daily life taking advantage of the breathing space ART offered, but this was threatened by the need to address comorbidities involving multiple specialists.

Partnership between PLHIV and clinician demonstrated a new model of care (Feacham 1995). Early in the epidemic when experimental treatments were being trialled, PLHIV ensured they were making informed decisions by investing significant time in learning about options and emerging data to take care of physical health (Menadue 2003; Strub 2014). At that time, the traditional approach to care of chronic conditions relied on clinician authority and compliant patients (McLean and Savage 2009) rather than partnership with clinicians. However, a model of partnership between PLHIV and clinicians was promoted by PLHIV organisations. Although gay men embraced this approach as it countered mistrust arising from the role the medical profession played historically in the oppression of gay men, it was not taken up by heterosexuals for whom ‘authority and expertise were firmly located in their HIV doctor’ (Persson et al. 2009, p. 6).

While the ‘expert patient’ approach has been described as a ‘neoliberal idea’ (Persson et al. 2009, p. 6), it was employed by PLHIV organisations as a collective as well an individual empowerment strategy consistent with the GIPA principles. Recent studies of the lived experience of people with chronic illness have highlighted the growing acceptance of the importance of the creation of trust and learning through interaction with clinicians (Nygardh et al. 2012; Mei-Yu Yeh et al. 2018). It was also a powerful driver of change, with activists demanding access to treatment from drug companies and government, innovative drug trial protocols, and faster approval processes for new drugs to be utilised and funded via the Pharmaceutical Benefits Scheme (France 2016; Fitzgerald et al. 2019).

With improved treatment and sustained undetectable viral load, the possibility had opened up for a shift from active partnership with health care providers towards more reliance on the s100 prescriber and the GP. Warren (E2, T1) had been strongly engaged in maximising his chances of survival early in the epidemic and sought out a clinician with a reputation for an aggressive approach to treatment. Like others, as part of a strategy for HIV to ‘claim only a small part of their social identity’ (Rai et al.

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2018, p. 1136), Warren was taking advantage of the way his HIV management had stabilised since achieving an undetectable viral load to rely more on his doctor to stay across the latest research.

I was the patient from hell […] I had everything nice and stable [so] maybe I better leave it [staying across latest research] up to the doctors [… now] I’m not looking for alternatives [...] I’m just wanting it [HIV] to stay in the background, to be just that manageable condition […] just let me live my life […] I think I have surrendered. Oh God, I have become old (Warren, E2, T1).

Even though Warren was concerned that relinquishing control by trusting his doctor to manage the details was an indicator of surrendering to old age, he also appreciated that it freed up time to devote to getting on with other aspects of living. Doubts were also expressed about whether this breathing space would last if ageing, emerging comorbidities and disability required renewed investment of time in health maintenance and decision making. Participants were anxious that service cuts in Queensland could disrupt long-term relationships with health care providers built up over a long period.

It’s been quite scary. The current Minister for Health owes me a letter because I wrote to him about it […] I got so disheartened by it I actually thought about [moving interstate]. I really felt that Queensland is going back in time (Warren, E2, T1).

Most participants were actively caring for self and could be considered ideal ‘patients’, self-reliant and co-ordinating their own care, but this increasingly required good cognitive capacity and knowledge, well-established networks and a considerable investment of time as multiple specialists became involved. Some long- term survivors were conscious that actively taking care of their own health not only meant they had the bonus of living longer than expected, but they may outlive their peers. For Lewis and many others, this was a big turn-around from the death- sentence AIDS diagnosis days.

I told [my brothers, about my HIV status] in about ‘89/’90 because at that time I started thinking “Wow, I’ve lasted this long, but if they

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don’t hurry up and get something in the medication department, my time will run out” […] They’ll probably die quicker than me though because they’re into abuse of alcohol and drugs (Lewis, E1, T1).

One of the eldest participants in the study, Derek, emphasised that maximising physical functioning required a strong commitment to self-management, convinced that how he conceptualised the situation made a difference.

You’ve got to put the effort in to looking after yourself as […] you can’t just keep relying on other people. You have to get off your backside […] Be positive. Get yourself up in the morning. Think about what you can do in that day that’s constructive and do the best you can […] There’s no grey areas. It’s difficult […] You’ve got to look after yourself, and then you’re on the right road (Derek, E2, T2).

For many, the relationship with their s100 prescriber extended across many years, if not decades, and for some the relationship that developed when they lived in an urban area was maintained after relocation, despite the extensive travel involved. However, what was required from the relationship had changed from palliative care, through experimental treatment, to care of a chronic condition and increasingly balancing this with associated comorbidities. With ageing, the nature of the relationship with s100 prescribers was being tested by the range of health issues beyond HIV that were emerging, highlighted by what some experienced as pressure to engage with a GPs for non-HIV care and care co-ordination. However, finding a suitable GP willing to bulk bill was not always easy, and continuity of care was not sustained.

To clean your ear out they don’t need to know about HIV really, do they? [...] I’ve been going to the same place and two of the doctors

I’ve seen have left and I’m seeing a new one now57. They’re all new

57 Walter’s third GP in 12 months, coinciding with closure of the local sexual health clinic and a change of s100 prescriber.

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doctors there now. I don’t know what’s going on […] I just haven’t had a chance to talk to a doctor lately (Walter, E2, T2).

Walter had also been impacted by cuts to state government-funded sexual health services, with his long-term clinician made redundant and his local HIV clinic closed down. By the second interview, he was required to pay out of his pension to travel by taxi to a distant location as with limited mobility he was unable to use public transport. This was a lot of change for him to adjust to and he was unsettled by the situation.

A number of participants indicated that they were under pressure from the state government-funded sexual health services to establish a relationship with a GP to co-ordinate care as that was not the role or expertise of sexual health clinicians (i.e., cardiovascular care, diabetes care, gerontology etc). There were two main drivers for this. The first was the participants having several comorbidities requiring co- ordination of access to specialist expertise beyond basic HIV management, and the second was sexual health clinicians employed by state government/area hospital and health services were sticking to their core function as funding tightened, rather than taking on co-ordination duties and a broader scope of practice. This occurred in a context where the state government-employed s100 prescribers were sexual health specialists, without expertise in the management of the full range of comorbidities that emerge when PLHIV age, including gerontology (ASHM 2015).

Although participants were generally very satisfied with the quality of Queensland sexual health services, this satisfaction did not extend to all health services. One hospital was seen as pushed to the limit. Julian had private health cover and secure finances, but his previous experiences meant he would relocate if he started to become ill.

Even if you’ve got private health cover, you’re up in the Base hospital because there’s no beds left in the private hospital […] I sat in the waiting room […] with pneumonia for five hours before they even saw me and then I spent 12 hours in the emergency room… those experiences scar you, they impact […] I wouldn’t stay in [regional centre] when I was starting to get sick, I’d be moving (Julian, E3, T1).

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Julian observed that the lack of adequate local services extended to palliative care and aged care services.

It’s generally thought of by people in the know that you wouldn’t want to get old up [here…] Getting into palliative care is a problem in this town. There’s not enough palliative beds. I’ve had a friend who’s recently had a stroke, 60. He’s been in hospital for six months while they try to find him somewhere to go […] The services are there and the people who run them are great but there’s just not enough of them (Julian, E3, T1).

Some participants were very resistant to the expectation they access a GP, wanting their trusted s100 prescriber to remain their primary clinician. These participants did not trust that generalists and non-HIV specialists would be across the implications of HIV and provide non-discriminatory practice. Julian (E3) was financially secure and so had the option of paying one doctor as both their GP and s100 prescriber.

I like my health to be done all under the one person, I like them to do everything. I’m the sort of person who likes everyone done altogether. I had no issue with sexual health clinics, I think they’re fabulous, but I’d rather their time be used for people who need it. If you can afford to go to the doctor then it’s much better to have a doctor who can do everything for you (Julian, E3, T1).

Participants usually had a strong attachment to their current s100 prescriber as their key ally in managing their health, which enabled them to make contact at a social level. Some credited these clinicians with saving their life. For example, Clayton (E3) shared that the skill of a nurse practitioner and s100 prescriber team had identified his cancer early, which enabled it to be successfully treated. An important aspect of Clayton’s (E3) experience was that he felt he could make contact without having an appointment when visiting the regional centre. This highlights the way rapport between clinicians and PLHIV in regional areas is critical, but also how practices in these areas need the capacity and flexibility to respond whenever opportunities arise to access care. Given the distances involved, presenting at the clinic will not always be possible particularly when PLHIV have limited finances, and so the provision of a safety net via telehealth needs to be developed in regional areas.

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Wasn’t feeling great […] so I did the next best thing was instead of seeing [nurse practitioner] at the clinic, I rang up and said, “I'm coming down. I'll drop in for a cup of coffee.” I called in and she looked at me and she said, “You're all jaundiced” […] It was a high- grade aggressive cancer […] I still had to do the six months of chemo […] If I had not been more active on listening to my body I perhaps might not have succeeded in beating this. So HIV has taught me to act on rather than just say she’ll be right (Clayton, E3, T2).

The empowered approach to engaging doctors was summed up in Duncan’s (E1) comment that ‘You’ve got to train these doctors yourself too’ (T1). He lost one GP to HIV early in the epidemic and broke down in tears at the news. He expressed a deep loyalty to his current s100 prescriber, which meant he resisted pressure to get a GP, and going to see his doctor was one of the few reasons he left the house.

A few participants had GPs who knew about HIV and took on the considerable work involved in co-ordinating multiple specialist inputs, often while bulk billing. These were usually doctors who had migrated from countries with a high incidence of HIV. Jared (E3) had severe memory problems, many specialists, and clashes between treatment plans, which meant he still had a detectable viral load. His GP, visiting nurses and in-home carer supported him with all of this, which enabled him to remain at home and manage much of his treatment regime.

In general, participants complained that non-HIV specialists tended to blame everything on HIV rather than treat the presenting problem, and auxiliary staff tended to relate to them through a HIV lens. In his interaction with the broader health-care system, Duncan (E1) was very sensitive to any hint of dehumanisation, which had led to conflict with GP receptionists and the pharmacy. He recounted incidents in great detail and with regret that reinforced his decision to avoid leaving the house as much as possible. He recalled the first name of every person involved in altercations and had clearly replayed these incidents over and over in his mind.

You’re supposed to ring two days in advance […] to get your drugs and I hadn’t […] normally I try to get them when I’m going to the doctor, like I don't have make a special trip just to get the drugs […]

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she said “I’m sick of ‘you’ people coming over here […]” And I said “What do you mean ‘you people’?” [...] I said “You mean us people with AIDS?” […] I said “I’m a person, I’m not a ‘you people’”. Anyway I had her in tears (Duncan, E1, T1).

Trust was a key issue for participants, particularly as the potential for social exclusion and even violence was feared if HIV status became known in the small communities of regional and rural Queensland. Bruce (E4) did not trust his GP but felt he ‘had no choice’ but to continue to see him. Bruce was concerned his confidentiality would be breached by the GP.

Likewise, none of the Indigenous participants were accessing Aboriginal Medical Services in regional areas, as these services had failed to gain their trust that all staff, including receptionists, would maintain confidentiality in the close-knit Indigenous communities. As Richard (E3) put it:

I do not use the Aboriginal medical centre here. I refuse to use them […] they don’t know the meaning of confidentiality and I will not use them (Richard, E3, T2).

Because he did not trust that confidentiality would be maintained there and the sexual health clinic was far away, if he became ill he would go to the hospital rather than a GP. Fear of stigma and discrimination meant HIV and ageing could not be managed by participants as ‘just like’ any other chronic illness. To avoid exposure of sexuality and HIV status, Indigenous participants were accessing state government sexual health centres, but for Harold this presented a problem about being examined by women, which ran counter to what he had been taught was appropriate.

My mother was really, like, you know, men to do men's stuff and women do women's stuff. A woman look up my bum, you know, kind of just sort of felt a bit insensitive (Harold, E2, T1).

Participants with multiple comorbidities were often engaged with multiple specialists in addition to their S100 prescriber and GP, including mental health professionals. Keeping track of all was time consuming, or what Greg (E1, T1) described as his ‘primary occupation’, just to manage the appointment schedule and treatment arising. In addition, sufficient knowledge is needed to make informed decisions about

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treatment and care recommendations, and how to integrate the medical maintenance into daily routines so health concerns do not completely dominate existence, leaving no time to cultivate a good quality of life. For many participants, the individual capacity to manage this complex co-ordination and decision making was challenged by the memory problems associated with HIV. Concerns about memory were raised by more than half the participants, concerned that as they age, reliance on self-care may eventually become infeasible and could even become unsafe without any safety net in place to identify when support needs to be activated.

6.6 Uncertainty about future physical care access

It is acknowledged in the HIV literature that living on with HIV is not easy, and ageing entails another level of complexity (Fitzgerald et al. 2019; Woods 2019; Wing 2016; High et al. 2012; Power et al. 2010). Therefore, it was concerning that some participants experienced decreases in access to services during this study. While state government funding cuts were mostly to psychosocial support (which will be addressed in the next chapter), there were also concerns about changes to clinical services. The funding priorities of Queensland Health had been reoriented as biomedical tools for HIV management and prevention improved, as shown in the two images below. These charts show the milestones in the response to HIV and the changes in Queensland Government purchasing priorities that have occurred over time.

Image 13 outlines in green the major biomedical milestones since the emergence of HIV in Queensland, specifically ART enabling viral suppression from 1996, the gradual realisation between 2008 and 2017 that undetectable viral load prevents HIV transmission, and recognition from 2015 of the clinical benefits of starting treatment early. The chart also shows in red the service milestones from the twenty years of volunteer based community mobilisation via QuAC from 1984–2004, establishment of an independence PLHIV voice from 1989, the replacement of QuAC’s volunteerism with professionalised service delivery co-ordination and brokerage via Anglicare PD for 10 years from 2004–2014 (Howard and Porter, 2012), and a gap in service provision from 2014 to 2015/16 until QPP negotiated funding for a one-to- one peer navigator approach to assist recently diagnosed people to navigate the service system.

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Image 13: Clinical/treatment services milestones. Howard and QPP 201858

Image 14 details that funding committed for services to PLHIV through to 2021 was only about 45% of the 2014 level when Anglicare PD closed. QuAC had also had all state government funding withdrawn and was unable to address gaps other than psychosocial support on a small scale via its federally funded, volunteer-based visiting programme for elders in receipt of an aged care package in South East Queensland.

58 Presented by Chris Howard at the HIV and Wellness Workshop # 16, IRIS Education/ViiV Healthcare, June 2018, Brisbane and used here with permission.

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Image 14: Purchasing priorities HIV treatment and care services. Howard and QPP 201859 This reduction in funding for PLHIV services reflected the focus on biomedical outcomes, with ‘peer support, health promotion, advocacy and social programs no longer funded’ (quote from Image 14). That shift was part of a global trend of the neoliberal political philosophy of disinvestment in social spending (Baum, 2015; Labonte and Stuckler 2016). In the neoliberal approach, health and wellbeing are treated as a personal responsibility and moral obligation even when individuals have little control over the factors that influence outcomes (Beck and Beck-Gernsheim 2002). Although QPP funding is focused on the phase immediately after diagnosis or when the treatment adherence of longer-term survivors is at risk, there are also impacts of withdrawal of funding on addressing quality of life beyond viral suppression (which will be further explored in Chapter 7).

The 2013 proposal to reduce sexual health and AMU services, and the period of protest that followed, then the reconfiguration and reduction in services, impacted participants in regional areas in at least three ways. There was a sense by many participants that if the AMU was cut, then cuts to regional services would follow.

59 Presented by Chris Howard at HIV and Wellness Workshop # 16, IRIS Education/ViiV Healthcare, June 2018, Brisbane and used here with permission.

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People in regional areas who chose to travel to Brisbane to maintain a long-term partnership with a trusted clinician familiar with their case history were concerned that they may be forced to access services locally. Gus (E3) had tried to transfer over to a local service but was confused and upset by the way he was treated, so this prospect now created intense anxiety.

I don't know why but the whole experience turned […] very weird […] they’ve got security doors to get in and out, just it’s not welcoming at all […] you get the feeling they don't want to see you […] in the end he said well he wouldn’t see me, he didn’t want to see me because I was already being seen in Brisbane […] it was like bang, the door was completely closed (Gus, E3, T1).

There had already been a direct impact at the lower end of the Sunshine Coast as the outreach clinic at Caboolture Hospital was closed, forcing participants to change clinicians and absorb the costs of travel. One participant aged in his 70s was exhausted by travel to a new clinic, and no longer seeing his trusted clinician. Participants in central Queensland were also concerned about the lack of stability in local clinical services, given high turnover of clinicians and the only consistency being a much-appreciated male nurse. One recently diagnosed participant complained that the clinician he had developed a good partnership with then opted for secure employment elsewhere as this was not offered in central Queensland.

Queensland Health clinical services in North Queensland and the upper Sunshine Coast followed the long-term pattern of stability with low staff turnover and high levels of expertise, collaboration and client satisfaction about their physical care. In most places, doctors were the one constant the participants could rely on. Consequently, there may be impacts on clinician workloads until case management and support of the most vulnerable are re-established in the future in some form, for long-term survivors to address the broader social determinants of health and wellbeing.

6.7 Conclusions

For long-term survivors, disability has been a recurring part of the journey, as a legacy of AIDS, of experimental treatments, and of the ongoing impacts of HIV and

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comorbidities. The cumulative effect of disabilities, comorbidity and living on with HIV meant participants were experiencing issues that more commonly arise in old age, even though participants were only in their 50s or 60s—or even their 40s for the Indigenous participants. This was most apparent for participants diagnosed in the AIDS-crisis years, in those who delayed starting treatment post-1996, and those diagnosed late in middle-age or later. However, it was also a concern even for those who were recently diagnosed but faring poorly with the social determinants of health before acquiring HIV. Participants were purposely resisting labels associated with disability and ageing. Yet, at the same time, they experienced a gradual but continuous process of adjusting to emerging declines in functioning, requiring improvised ways to live purposely within shifting limits.

The history of often damaging, inadequate and delayed treatment contributed to the physical challenges faced by participants when ageing. Most participants in this study were invested in the relationship they had with their HIV clinical providers. As Squire noted, a PLHIV often ‘talks about himself and his doctor as “we”. They are associates, even friends’ (Squire 2013, p. 84). Given this generally high standard of HIV clinical care received, participants concluded that the management of the physical aspects of HIV was now ‘the least of worries’. They were more concerned about complex comorbidities and were somewhat pessimistic about how their life course would be impacted by ageing. More than half expressed concern about the future given their sense that HIV was still impacting their neurological system and affecting their memory, particularly as ageing may also mean further decline and reduced ability to manage self-care.

A key aspect of managing day to day had been learning to live within limitations. Disability and a range of comorbidities were challenging and often involved the co- ordination of many specialists. Participants with impairments and comorbidities often already dealt with a complex array of specialists, but referral for management of a new condition, such as cancer, could take them well beyond the comfort zone built around their s100 prescriber. It was rarer that a close relationship with a non-s100 prescriber GP existed. While some participants had the support of a GP willing to take on the significant work involved in co-ordinating their complex care, many did not. Some did not trust their GP but felt they had no choice. All the Indigenous participants chose to access HIV care via sexual health centres rather the Aboriginal

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controlled medical services. Most of the participants had been visiting doctors for health monitoring for decades and expected this would continue and intensify as they aged and comorbidities increased. Beyond the clinic door, managing HIV and multiple morbidities while ageing was near to a full-time occupation for individuals in the absence of care co-ordination systems and other supports, and many worried that as their physical health deteriorated, and support dwindled, ‘what will become of me?’.

There was a shift towards taking advantage of the breathing space that improved treatment provided, to focus on quality of life beyond managing HIV. Rather than investing a great deal of energy into the individualised self-reliance that a neoliberal approach to health services provision favours, participants were expressing a need for more space in life for things other than HIV after decades of putting a great deal of energy into survival. To open up that space some participants had consciously stepped back from staying on top of the details of HIV literature, and were relying more of the advice of their multiple specialists, as part of an attempt to live beside, rather than within, HIV. However, this strategy was threatened by emerging ageing issues that pulled the focus back onto biomedical uncertainties.

While the high standard of clinical care provided a firm foundation, it was unable to address the broader health and wellbeing concerns of participants, particularly as there was little optimism that the social climate would improve for PLHIV as they aged in place in these rural and regional areas. The lived experiences of the participants in this study strongly suggested that the notion that ‘HIV is different now’, and expectations of near normal life expectancy should not be interpreted as meaning that living with HIV is now easy for most participants. Despite the difficulties, many participants demonstrated remarkable determination to survive, keep their physical health challenges in perspective, and not let HIV concerns dominate their life. The prognosis offered by the biomedical response to HIV reinforces the need to look beyond the physical to live well with HIV. In the next chapter, we move beyond the challenges raised by the dominance of biomedical narratives to explore daily life and the quest for ageing meaningfully with HIV in regional Queensland.

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Chapter 7 Psychosocial Experiences of Ageing with HIV

7.1 Introduction

As survival time of participants started to be counted in decades rather than months or years, participants were faced with the challenge of ageing with HIV, aware that ageing itself was a privilege many of their peers did not survive to experience. Participants shared that these days the medical management of HIV itself was ‘the least of worries’. At times this statement highlighted the way the cumulative effect of multiple chronic conditions wore the participants down over time and undermined their quality of life. However, the bulk of the worries expressed by participants were not directly related to medical conditions. It was in the psycho-social sphere that participants described feeling vulnerable. Many observed little improvement in the social climate for PLHIV despite the major breakthroughs in the biomedical control of HIV. Participants often adopted the strategy of flying under the radar to avoid judgement, exclusion, and harassment. Maintaining secrecy made it difficult to develop supportive social connections and participate meaningfully in their local communities, and the effort required to maintain safety was a day-to-day psychological burden.

This chapter will explore the key themes related to pyschosocial aspects of health. A psychosocial perspective centres the emotional aspects of lived experience in the context of issues of political and social power (Frosh 2003; Clarke 2006). These findings challenge any assumption that viral suppression alone ensures a good quality of life. The major theme of this chapter is the interaction of mental health struggles with unrelenting fear of stigma and discrimination. Participants described experiences of interconnections of mental health issues and stigma, yet they also revealed how they actively resisted being overwhelmed by these challenges. Examples of active agency and resilience included the utilisation of disability and other chronic conditions as a protective ‘cover story’, highlighting interconnections between social and physical dimensions of health. Cultivating sheer determination and grit has enabled survival for many, but it could also lock in emotional numbing, and stall recovery from loss and trauma (Odets 2019).

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Another major theme in this chapter is how participants developed routines to structure their days. Taking control of what was within their remit provided a degree of certainty to balance out the uncertainties of ageing with HIV. Most participants had lived on the DSP for decades, and once treatment improved and they survived well beyond the death sentence diagnosis, they faced the challenge of how to live a meaningful life without the purpose, structure and income that work usually provides to people. Such disruption to their life course was seen in the ways participants creatively adapted to constrained circumstances to make the most of each day, in a precarious balancing act of asserting identity in some situations while also needing to keep their HIV status and/or homosexuality socially undetected in other situations or places. Many participants carried a significant emotional burden from past difficult experiences, and while trauma60 depends on the meaning attributed to events, the events participants have faced across their life course could have predisposed them to being overwhelmed (Turnbull 2011; Halkitis 2014).

7.2 Stigma and collective resilience

Living as a member of stigmatised minority has a negative cumulative effect on health and wellbeing, contributing to poorer health outcomes such as high rates of smoking, hypertension, disability, depression and suicidal ideation (Goldhammer et al. 2019). The Minority Stress Model (Meyer 2003; Meyer and Frost 2013) highlights the relationship between stress and illness due to the oppression of LGBTI minorities. This oppression is maintained by institutions, the ways in which resources are distributed, and entrenched power relations, creating structural disadvantage (Young 2009). These structures are synergistic, meaning they are mutually reinforcing in ways that make them difficult to change (Singer et al. 2017). The resultant disadvantages create the preconditions for multiple chronic illnesses and impoverishment of the marginalised (Mendenhall 2012). The lives of the marginalised are impacted in what has been called ‘recursive cascades’ (Manderson and Warren 2016, p. 491) to convey the momentum of an almost inevitable

60 ‘A traumatic event is usually defined as anything an individual experiences as threatening to his own life, safety or well-being…or of others…personally witnessed…physical or psychological…gay children often experience both. The early epidemic qualifies…[and] the stigmatizing social consequences…[still] often make seroconversion—or just fear of it—traumatic’ (Odets 2019, p. 187).

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downward trajectory. Cascades of negative health and social circumstances, creating a cumulative downward spiral of poorer health and quality of life, was a feature of ageing with HIV in regional Queensland.

The participants in this study faced multiple stigmas, including stigmas experienced as associated with being gay or bisexual and HIV+, Indigeneity, being a welfare recipient, and mental illness, as well as ageism. Exposure to anti-LGBTI prejudice and discrimination can be traumatic particularly when exposure is chronic, as occurred for many older LGBTI people who came of age before progress was made on LGBTI civil rights (Goldhammer et al. 2019). Matthew was one participant who had experienced aversion therapy, further trauma with a HIV diagnosis, the illness and death of his beloved, and survivor guilt, all of which contributed to a current problem of chronic depression and binge alcohol use causing memory black outs.

I went through every type of therapy you could think of but the aversion was the worst […] I was horrified (Matthew, E1, T1).

Internal conflict about being gay had not settled before he was diagnosed at that same time as his partner.

I was still battling with the thing about being accepted as a gay man and coming out to people and friends and family and work colleagues finding out and so on let alone the HIV thing (Matthew, E1, T1).

The grief over loss of his partner of 11 years was compounded by guilt that he did not cope better, even though he was only in his 30s at the time.

I knew I loved him before he passed away but when he passed away it really, really hit home hard – you have guilt and regrets, all the things I could have done better for him and there were times where I had trouble dealing with his sickness and it was a stress for me and that sounds very selfish. I mean he’s dying and I’m stressing out about myself and at the time, particularly afterwards, I felt so guilty, really, really guilty. So that was really hard (Matthew, E1, T1).

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Many participants had mental health struggles before acquiring HIV, reflecting the impact of the intersection of the stigmas outlined above. This included trauma arising from childhood sexual and physical abuse, chronic anxiety, and major depression, and in one case, a formal diagnosis of PTSD. Given these circumstances, it is not surprising that mental health issues were impinging on the quality of life of participants. About half the group had a history of problem drug and alcohol use. Half had been on anti-depressant or anti-anxiety medication long-term, but very few had a current mental health plan. Exercise was the most common strategy for managing depression, and some even attributed the acquisition of HIV to poorly managed depression.

Resilience is defined as ‘the quality of being able to survive and thrive in the face of adversity’, and there is no doubt that development of personal resilience assists the survival of PLHIV (Meyer 2015, p. 210). Resilience, including adaptation to trauma, has been shown to be as much a collective as an individual phenomenon (Sousa et al. 2013; Meyer, 2015; McEwan and Boyd, 2018). Meyer (2019) has been critical of interpretations of his Minority Stress Model that focus on individual rather than collective resilience. However, the peer navigator programme model now being funded in Queensland relies on the one-on-one support of a HIV+ peer paired with each recently diagnosed individual, rather than the development of a supportive PLHIV community, which was a feature of past empowerment-orientated programme models. In the past, safe spaces where PLHIV could be open about their status and make a contribution were created, such as Grimwood House on the Sunshine Coast, which was a classic enabling space (Duff 2011). Grimwood House was a community center in Nambour named after a local doctor who died of HIV-related causes, which was operated jointly by QPP and QuAC as the hub of the HIV response on the Sunshine Coast. It closed after strong community protests against State Government defunding of QuAC’s volunteer-based HIV support services in 2004 were unsuccessful in having funding restored. Grimwood house was recalled with nostalgia by E2 case study’s Edwin and others, and contrasted with the lack of community in the present:

Grimwood House was an excellent model […] Everyone was so happy there. We had a whole team of negative people and positive people working together and a lot of positive people were in the

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most important roles […] I was surrounded by positive men like myself so we had great interaction […] And we all looked out for each other […] And here [now] there is no sense of community (Edwin, E2, T1).

An important aspect of this was the opportunity to contribute. Such opportunities are now rare in regional Queensland with the possible exception of the QuAC building in Cairns, which also accommodates QPP. The defunding of the HIV and LGBTI community organisations in Queensland during this study reduced capacity to maintain peer support networks and strengthen community. Even for the older recently diagnosed participants, the peer navigation approach provided only weak support for engagement with other PLHIV and exploration of gay identity and community connection. This caused a degree of frustration and impatience as they experienced an urgency in coming to terms with the impacts of HIV and the amount of new information that needed to be taken on board, and finding their community and ways to contribute.

So perhaps after the initial settling down period, that’s when we should have dropped in our lap the total amount of information available and I’ve found that it’s been coming trickling in. And the most annoying ones are things sort of just dropped in my lap off the cuff, things that are deadly serious (Russell, E4, T2)

The eldest of the recently diagnosed participants was particularly concerned that he had limited years left and was highly motivated to explore LGBTI networking as a new start for the final phase of his life, but the community cohesion that once existed had broken down leaving him isolated and feeling under-utilised.

The LGBTI community […] that's come into my life very much […] It's just that after six months I was ready to […] do all sorts of things and it was like someone putting the bloody brakes on you all the time […] and that's the frustration […] it's all split up and gone different ways (Dennis, E4, T2).

The negative judgment of the worth of PLHIV as human beings that underlies ageism, homophobia and the various forms of HIV-related stigma, including

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internalised self-stigma, needs to be challenged to reduce the negative impact on the health of PLHIV (Goffman 1963; Cairns 2013). While the dynamics that diminish the selfhood of PLHIV often present at the relational level, the increasing reliance on biomedical interventions in the response to HIV largely leaves the problem of internalised and social stigma to be self-correcting once PLHIV have an undetectable viral load. However, the participants in this study, even those recently diagnosed, did not report an easing of stigma in their relationships and communities in biomedical era. Some expressed frustration about the injustice of continued social stigma and discrimination given the overwhelming evidence that PLHIV on effective treatment do not transmit the virus, and the care taken by PLHIV with detectable viral load who know their status to ensure the virus is not transmitted. Dominic complained that HIV negative gay men still:

live in a sense of crisis, that HIV and people with HIV are not to be trusted, they’re bearers of death. Positive guys have moved on from that crisis from the ‘90s. Thanks to meds, we have hope […] it doesn’t matter what message comes out that we are the bad guys or that we are fundamentally not to be trusted, we have […] a core belief system informed by our lived experience that says otherwise (T1). It's about a sense of community that we all take ownership of this. It's not about placing blame […] it goes deeper […] there's an inbuilt hatred […] in our community towards those who are positive and there's a shaming that goes on and a finger pointing (Dominic, E1, T2).

7.3 Barriers to social participation as an older person

The opportunity to contribute meaningfully to society was a key determinant of quality of life for participants. Many participants were grateful for the support and care they had received that enabled them to still be alive and generated a strong need to ‘give back’ to society. However, it was a struggle to find ways to do this meaningfully without risking rejection and safety. This raised questions of moral worth as internalised stigma and shame challenged self-worth, and as Lyons and colleagues (2015) have found, doubts were reinforced by social stigma and discrimination related to HIV and homophobia. Doubts about self-worth set up a

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negative experience of ageing, which exacerbated other ageing-associated challenges. As Stuart observed:

What I’m realising is that we get more invisible as we get older, we get less important in people’s lives and we get less important in society. So, you know you often have to remind people that you’re here […] that you’re a human being as well (Stuart, E1, T1).

Many of the participants had led full, big lives prior to contracting HIV in the sense that they were highly social in vibrant urban environments, often in well-paid jobs with a lot of responsibility while quite young, and were often well-travelled. They bought skills and experience to regional areas that could have been a boon to local communities, but that potential was rarely realised in their more constricted lives. Contributing to society can be as simple as a moment of helping someone else, and how that connect makes the contributor feel is its own reward.

Takes the focus off you for a minute. Yeah. You do feel better if you’re helping people (Rory, E3, T2).

Many participants had been active volunteers throughout their decades of living with HIV, even if opportunities to contribute to the LGBTI communities and PLHIV communities were usually very limited in regional areas. Participants puzzled over their marginalised place in society given what they had contributed in the past through participation in experimental drug trials, as volunteers, and as workers. Some had braved being highly visible as a PLHIV to educate and reduce stigma for others. Two who had even revealed their status in local newspapers at quite different stages of the epidemic (one in E1 and the other in E3) and reported that the local community had become positively engaged with them.

Those involved in HIV activism usually framed this as a practice of making a contribution to improve the circumstances for everyone (Power 2011), and most of those who had been or were still involved in this way were proud of the legacy that such activism had produced. Many felt it was not possible to continue activism in regional life while acknowledging it is still relevant to some extent in urban areas and social media spaces. Being visible involved risk to the individual, so required the back-up of a support group. Such support was thin in regional areas, although it was

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a feature of the Sunshine Coast in the past and was still available in Cairns where both QuAC and QPP had offices with paid staff during the study. An activist group of PLHIV was operating in Cairns, but the small group of PLHIV that had met a few times in Rockhampton was a low profile support group without any designated convenor. Limited support for LGBTI community networking was available in Townsville, Rockhampton/Yeppoon, on the Fraser Coast, and the Sunshine Coast, usually via social media and occasional organised events.

There was complaint that current opportunities to reflect on the experiences and concerns of long-term survivors were being distorted by requirements to present their narrative with a particular ‘spin’. Marshall was at odds with the positive spin on living with HIV that he felt was compulsory for participation in spaces shared with younger people such as The Institute of Many (TIM) social media space. He concluded:

Everyone is welcome if they come into TIM with the right attitude. Now there’s the thing […] I’ve got the wrong attitude here. And it’s also really evident […] they’re young, they’re healthy […] their lives are going to be completely different to mine. I’m not even sure how to have a conversation with them. I feel quite excluded by this ‘the right attitude’, I don’t have it (Marshall, E2, T2).

Dominic also felt excluded from an online forum for PLHV after he expressed that he was ‘not coping with life’:

If you’re not one of the new wave of everyone’s well, everyone’s healthy, everyone’s got a job […] What these people don’t see is the true lived experience of years of poverty, years of mental health issues, drug dependency […] strokes or heath attacks or lung issues, cancers […] dealing with toxicity […] the moment you bring up that conversation you’re closed down […] your voice as an older long-term survivor is not acceptable to talk about that lived horrific experience (Dominic, E1, T2).

On the other hand Dominic also complained that his interest in emphasising a ‘sense of hope that PrEP would be the game changer’ was at odds with the Pos Lit Writers

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Group as ‘the book had to be about the bad experiences of being HIV positive, we had to talk about the negative experiences’ (Dominic, E1, T2). In that process, he wanted to reflect on catalysts powerful enough to produce cultural shifts in attitudes to PLHIV.

Another way of contributing to society and adding to quality of life was through participation in the workforce. Almost immediately after ART became available, activism around employment for PLHIV started. The Positively Working community- based group was formed in Sydney in December 1996 and produced resources on returning to work. By 1998, a government grant supported research into the transition from DSP back to work (Lawless 1999). Participants in that study were mainly involved in voluntary work, particularly with AIDS service and PLHIV organisations. That study highlighted ‘the way society’s emphasis on work as one’s primary sense of identity is in many ways detrimental to a person’s sense of health and wellbeing, especially when one is no longer able to participate or compete within the full-time labour market and workforce’ (Lawless 1999, p. 9).

The number of participants who were participating in paid and unpaid (volunteer) work is depicted in Table 13 according to the era in which they were diagnosed. The number volunteering is shown in brackets.

Work Status Era 1 Era 2 Era 3 Era 4 TOTAL

No paid work and 2 (2) 4 (1) 5 (2) 1 12 (4) DSP

Retired 1 3 (2) 1 1 (1) 6 (3)

Student 1 1 2

Part-time work and 3 (2) 1 1 5 (2) DSP

Part-time work 2 (1) 1 (1) 2 (1) 5 (3)

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Full-time work 1* 1 2

TOTAL 10 (4) 8 (4) 10 (3) 4 (1) 32 (12)

The work participation rate and form reflected a history of living with HIV before effective treatment was available, mental health issues and the emergence of cognitive decline, as well as physical impairment. There were exceptions, such as Warren (E2) who had been diagnosed nearly 25 years ago but worked at least part time most of those years. He had the advantage of flexible urban employers he could be totally open with, and they accommodated his periods of illness and fatigue, plus he had benefited from earlier than usual treatment. About half the participants diagnosed in E1 were working some hours per week but also accessing DSP enabled carefully managed fatigue. Less than a quarter of all the participants relied on work for their income and they were spread across the eras. However, nearly 40% of participants from across the eras were active volunteers.

Many participants described their frustration with barriers to participation socially and in the workforce. Participants talked about their experiences of physical impairment and the impact this had on employability. For example, Edwin (E2) had set about ‘earning his pension’ by volunteering 30 hours per week as soon as he recovered from the AIDS-defining illness that ended his career. Often not being able to work was associated with a devaluing of self, and feeling devalued by society. Despite HIV and physical disability, Dominic was determined to avoid ‘welfare dependency’ and was very distressed about losing his job at T2 and shared the things that went through his mind:

‘I'm just mentally disabled’ and ‘I'm just the HIV’, ‘I'm just a victim’, ‘I'm just in that welfare trap’, that ‘I will always be disabled’ and ‘I'm not ever capable of getting myself out of that rut.’ But […] I've learnt that through that job I felt valued […] I thought I was doing my job exceptionally well. (Dominic, E1, T2).

Dominic resisted feeling devalued by searching for a rational reason for being laid off.

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It's all because of my [physical disability], right… they don't want to take the risk of having me lift something and then cause damage whilst on the job (Dominic, E1, T2).

Some participants had physical impairments that interfered with the skills necessary to carry on their profession, and before giving it up a few went to great lengths to adapt and cover-up the problems.

I would injure myself quite frequently because my fine motor skills are lousy [...] I used to find clever little methods of getting around it or hiding it from customers. But its left me feeling a fraud and embarrassed and sometimes would cost me rather large chunks of money to make good my mistakes (Russell, E4, T1).

The constraints of permanent physical impairment and chronic pain led one participant to start a hobby business at home, continuing one component of the small business he used to own and run. Working at home enabled him to work at the pace his pain levels allowed.

You are allowed to earn a little bit while you’re on the disability pension […] if I start getting (pain) I can go to lay down or whatever. I can stop it and start it at any stage so it’s perfect (Andrew, E3, T1).

Self-monitoring to manage fatigue was a common theme, not attending to signals of fatigue was discussed as related to burnout and illness. Pushing too hard was difficult to distinguish from active ageing. Participant narratives highlighted how ageing with HIV required well-honed skills of reading bodily signals to balance activity with the need for adequate rest. While a few participants who had been on DSP recovered from an AIDS-defining illness and returned to full-time work, a degree of ongoing impairment remained, and most remained on DSP. Participants living long term with HIV often experienced unreliable energy levels, and this alone made it difficult to commit to employment.

A preference for part-time work and flexibility, such as working from home with flexible deadlines, made employment sustainable despite impairments. This was a complex set of issues for the participants who had a desire to benefit from the income, social interaction, exercise and the sense of purpose that comes with

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participation in a workplace but were also constrained by the risk of losing DSP as a fall back if they started demonstrating some capacity to work. Eligibility for DSP required a minimum number of points in one condition to maintain eligibility. One severe condition was likely to qualify, but multiple less severe chronic conditions and HIV may not. The self-assessment of PLHIV that they do not have the stamina to work full-time needs to be respected. Neil (E1), whose quality of life was greatly enhanced by a little extra income to pay for travel that provided a psychological break from his oppressive local environment, had found a way to stay on top of fatigue by not ever working two days running, and regularly taking extended breaks from working at all. He was fortunate to have a role and an employer able to accommodate this flexibility.

Some participants tried to maintain a working identity but made themselves ill in the process. Going on DSP meant loss of a valued occupational identity. A former chef lamented that his skills were wasted and that although he could not work as a chef he could still pass on skills and even supervise a kitchen, if government policy was changed to utilise rather than waste the talents of people with an impairment. One couple had found a way to utilise the skills of a registered builder suffering balance problems due neurological damage, by embarking on a home renovation project extending over many years, adding to their sense of home as refuge.

We potter around the house and renovate [...] I know it doesn’t look like we’ve done a lot but we have done a lot. I’m being defensive now. It takes forever to do things, longer than you think (Warren, E2, T1).

When Warren (E2) did not have a job outside the home he felt reduced to ‘an old man shuffle’ (Warren, E2, T1) around the house, despite volunteering locally. He lamented the loss of intellectual stimulation, and the loss of routine exercise that came with commuting to and from work. By T2 he had found a part-time job and was in the process of reducing the hours further to ensure it was sustainable long term, while planning early retirement assuming his body would not hold-up as long as his HIV negative peers.

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7.4 Everyday life and routines

The participants in this study had very diverse experiences, but they all had in common complexity arising from the social and psychological factors that underpinned much of their health and wellbeing. While generalisations, small and large, may be useful, the particularity of daily life is critical for understanding lived experience. As Berger and Berger (1972) observed ‘it is only because most of our experience is ordinary that we have any energy left over for the extraordinary things that do happen from time to time’ (p. 16). An important aspect of this study is taking a sincere interest in how participants function in their usual milieus, rather than assuming only the exceptional and dramatic has anything to teach us. By detailing how days were spent the participants revealed much about their concerns and expectations about ageing with HIV.

Participants described their daily routines which provided structure to the day.

As soon as I wake up now, I have a routine. I get out of bed. I put the kettle on […] the first thing I do is my emails (Duncan, E1, T2).

It gives me something to look forward to two days a week [study]. A bit of a routine, then the rest of the week I’ve got study to do at home […] So I have a bit of structure to my week and a bit more purpose to get out of bed which is always good (Liam, E1, T2).

Liam’s description is reminiscent of the Charmaz (1991) finding that living with a chronic illness alters the perception of and utilisation of time.

Routines also developed around stretching limited incomes. Regularly visiting the public library to ‘do computer work’ was how pensioner Tyson (E1) managed to stay connected while also ‘making a morning of it’. Careful management enabled the occasional extravagance to express something important about a sense of style and self. For example, Edwin (E2) found ways to save money, especially by not having a car, so he could afford one extravagance, a statement piece of furniture that took pride of place in his home renovation.

I’m on the pension […] but I don’t smoke and I don’t drink and I don’t take drugs and I don’t go out because there’s nowhere to go except the RSL and I hate it. I eat lunch out every day, it’s cheaper. I always

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wait for twice-yearly sales. I got all my furniture half-price. I didn’t get that couch half-price […] I had that made especially for me […] my one big extravaganza (Edwin, E2, T1).

Such routines were seen as efficient and desirable even if this risked being considered a bit ‘set in my ways’ (Phillip, E4, T1), as long as the ability to be flexible was not lost. For participants who had lived in institutional settings as a child some routines were ingrained, but there was also a striving for individual expression. Overcoming the damaging aspects of institutional care gave Phillip determination to not be locked in but to ‘look forward to the future with a great deal of hope instead of despair’ (Phillip, E4, T1).

I’m not a static person […] I do have routines […] call me set in my ways, but maybe it’s just part of getting old, but it’s so much more convenient, and besides, I’ve got flexibility in other things (Phillip, E4, T1).

Participants tended to take each day as it comes rather than plan, a common approach in the era when an AIDS diagnosis meant the person would probably not live long, and which has continued for many. For some, planning for the future created too much anxiety, but not having a plan also demotivated as it reinforced the inertia of depression. When asked about plans for the coming year, both Liam (E1) and Xavier (E3) made this direct reference to avoiding planning as it provoked anxiety.

I don’t really have any. No. That’s another thing about my life, is I tend to just live day by day… But yeah I don’t really have any plans for the year—that can sometimes be a bit de-motivating. But if I make a plan I get anxious about it (Liam, E1, T1).

I can’t look into the future too far because I get anxious […] I have to just focus on the now […] if I look into the future […] that’s what anxiety is […] it’s not healthy for me to do that […] I’ve had to go no, we deal with that when we get there. This is a coping mechanism I’ve had to introduce for me to cope with things (Xavier, E3, T1).

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Rory (E3) also lived day-to-day as part of managing his ABI, and his anxiety about the future was particularly focused on the security his home provided. Prior to moving, he felt he was being exploited financially by family and unable to escape the situation unassisted.

I do worry about the future, yeah […] Where will I end up? Well I’d hate to lose this apartment […] You never know what’s around the corner. But I’d flip out completely if I wasn’t here (Rory, E3, TI).

Routines were also important for self-maintenance. Management of physical impairment with regular exercise worked well for participants who made it part of their daily routine, and also had mental health benefits.

PD had this gym program when I was in Brisbane […] and I’ve been doing it ever since […] two or three times a week. I’m not there to build a Mr Muscle look or anything like that but just to […] keep fit and active as much as I can [… because without exercise] it just gets worse (Angus, E2, T1).

The PD programme had assisted individuals to take practical steps to make exercise an ongoing part of their self-care routine and social life. This was described by Tyson as:

We meet on Thursdays. We normally walk and then go for coffee afterwards […] I go to gym twice a week as part of my health maintenance program that was actually initiated by PD […] I usually go over there, go to the gym, do my shopping, go to library, do computer work, whatever, and make morning of it on both days (Tyson, E1, T1).

Participants were very aware of the potential for regular exercise to relieve depression, but the particulars of place either facilitated or limited opportunities for exercise. Marshall’s (E2) day-to-day struggle with severe depression included swimming as part of his routine.

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I try and do a couple of kilometres, two, two-and-a-half, when things are good I can do that. Sometimes I’m not that good, sometimes I’m too depressed to go out of the house (Marshall, E2, T1).

This routine was facilitated by the proximity of his public housing to a public swimming pool. This was similar for Warren (E2) who was able to walk to facilities in a location that also provided a sense of community.

I walk to the beach. I walk to the pool. I walk to the library. I know my friends (Warren, E2, T1).

Participants managed chronic conditions in a variety of ways with adjustments over time as conditions changed, in some cases disguising the intrusiveness of symptoms. With multiple chronic conditions, maintaining adherence could take up a lot of time, and constructing a routine helped with the complexity involved, particularly when there were memory problems.

I’ve still got to do my insulin […] I take 30 units of Novorapid in the morning, 50 units of Lantra, 30 units of Novorapid in the lunch time, and then 30 units of Novorapida and Lantra at nighttime (Jared, E3, T2).

For those who worked full time and had other commitments, such as caring for others, that used up their free time, being able to ‘potter’ in an unstructured way during down time was an important balance to the demands on most of the rest of the day and night.

I just watch TV, potter around, do little bits here and there […] Tidying up (Richard, E3, T1).

However, filling up the day with routines could be a way of not allowing space for reflection. Bruce (E4) worked full time and all his time was highly structured, including detailed long-standing divisions of responsibility with his female partner. These clear agreements minimised possibilities for friction in their relationship during the difficult time of him being diagnosed, her being tested, and his homosexuality being exposed.

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I get up at 5.30 every morning and walk the dog for an hour and that’s part of my health routine also […] I garden, I mow the lawn. We have a bit of a structured routine. Every Saturday is housework day […] we both work, we both take responsibilities in cooking. So every second night, you’ve got to cook and when you cook, you clean up because you make the mess […] And the days disappear (Bruce, E4, T1).

Bruce’s comment reflected a strong sense that for all this organisation of every detail of daily activity, life was just slipping away. This sense that routines filled in the time until ‘the days disappeared’ was accompanied by a complaint that little of consequence was produced. Filling up the available time with repetitive routines was also how he spent his long service leave.

The days are going too quick and I don’t do as much as I used to do when I lived out west. I used to […] do up old furniture and stuff like that. Here, I go to work, I go home, play with the dog (Bruce, E4, T2).

This linear presentation of the daily schedule did not reveal any layering of experience. He did not talk about what he was thinking while carrying out this busy schedule that filled up the day. His psychologist was pushing him to examine the contradictions in his life that were forced into the open by his HIV diagnosis and depression, but he was reluctant. Addressing those contradictions could threaten the companionship of his long-term primary relationship and given their sexual estrangement since his HIV diagnosis, he was uncertain about the long-term implications of his homosexual behaviour and HIV status.

7.5 Flying under the radar

The expense of housing was a key motivator of participants leaving expensive cities for regional areas, so that the majority of PLHIV in Queensland live outside Brisbane. The search for safe social space was particularly critical in the parts of regional Queensland, which have the highest rates in Australia of belief that homosexuality is immoral, with five of the top ten high-scoring electorates in Australia in Queensland. In order those electorates were Capricornia, Wright, Hinkler, Maranoa, and Groom,

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followed closely by Dawson, Kennedy and Longman (Roy Morgan Research, 2010), which covers most of the places where the participants in this study lived (Image 15). This stocktake of homophobia was backed up by the results of the Australian Marriage Law Postal Survey where the majority voted ‘No’ in Maranoa, Kennedy and Groom, and more than 40% voted ‘No’ in Hinkler, Capricornia, Dawson and Wright (ABS 2017).

Image 15: Federal electorates in Central and North Queensland. Source: Australian Electoral Commission (2019).

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For many PLHIV, home had become their haven as they sought to fly under the radar, and so remain socially undetectable as far as their HIV status is concerned. However, retreat to home as haven carries a risk of social isolation and loneliness unconducive to good mental health and quality of life, particularly for participants living alone. In extreme cases, this may result in a form of ‘social death’ (Králová 2015), with individuals cut off from resources and viable identity reminiscent of the controversial Disengagement Theory of ageing (Cumming and Henry 1961). However, people can be forced into disengagement by lack of opportunity and ageist devaluing (Atchley 1999). Disengagement Theory proclaimed withdrawal of the aged from social participation as beneficial for society as it saved resources and made way for the next generation, foreshadowing the logic of neoliberalism’s opposition to welfare, so that vulnerable older people’s complicated selves and lives become disposable (Comaroff 2007). Ensuring the voices of older PLHIV are heard is a way to resist such symbolic and literal erasure (Enloe 2014).

For Duncan, who was living with PTSD, withdrawal from social contact was his way of protecting others from his ‘brain snaps’ where he ‘went off’ at people.

So it’s not really good […] for me to be out amongst the people (Duncan, E1,T1).

Pets provided him and others companionship less challenging than human contact, and provided a purpose in daily living, and Duncan and Lewis shared a deep devotion to their pets.

My goal is just to make sure […] that they’re alright […] She never leaves my side. I mean I do leave her when I go to the doctor or whatever but she knows, she seems to know if I’m going out in advance (Duncan, E1, T1).

My whole life is the two dogs […] I think “I don’t want to go anywhere. I just want to be with my dogs or go for a swim” (Lewis, E1, T1).

Flying under the radar to remain socially undetectable, or taking on the task of being open to educate others, were not the only strategies adopted. Some ventured into

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developing a small local network of support to relieve the oppression of a lack of safe social space. Others travelled to Brisbane for routine health monitoring and to see specialists, and combined this with visits to gay community venues, including sex on premises venues.

I live a fairly solitary life […] I’m also reasonably cautious about the status up here. So it just means I can get away, when I feel the need to […] it’s a case of being able to let your hair down in a different way to what I do up here (Neil, E1, T2).

While the open physical spaces and warm climate of regional Queensland did not translate into open social spaces and inclusion, participants shared that ageing and disability did not automatically provoke the virulent exclusion common with HIV and even with being openly gay. Participants living with multiple chronic conditions or comorbidities commonly described HIV as their most easily managed medical condition, but they also reported that HIV was the most challenging condition socially due to the associated intense stigma and discrimination. There was often utility in foregrounding a disability or comorbidity when revealing HIV status was far too risky. Disability provided a convenient and benign cover story for getting time off work to meet HIV-related needs, to explain to suspicious neighbours why public housing had been allocated, or just to redirect scrutiny and maintain privacy. This had the advantage of being based in truth, even if it did not capture the whole story.

Maintaining HIV status as a secret required effort and sacrifices. Even when homosexuality was accepted, it was not assumed HIV would be. Lewis (E1), who was openly gay in his regional village, maintaining secrecy at work about his HIV status meant he had refused participation in workshops offered by PD and QPP, or any PLHIV networking, as he could not predict who would be in the room. He would not risk his employer finding out about his HIV status. In this context, while a cover story was a socially acceptable screen, it closed doors to the benefits of the peer collective.

No, I don’t find any discrimination up here at all. In fact, I’ve never been welcomed so much being myself and not covering up. No, that’s one thing [HIV status] that I would keep secret [...] They know about me having cancer, and I’ve used that to help get time off and

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stuff—sick leave—with keeping up all these appointments and everything, and they’ve been really good (Lewis, E1, T1).

Cancer was a stigmatised illness in the pre-AIDS past (Fife and Wright 2000), but was now socially acceptable enough to operate as a cover story that carried no associations with homosexuality. This is an example of how various elements of identity were assessed as having different degrees of stigma and social acceptability. Thus, a ladder of stigma was in operation, though the range of experiences of participants suggested the rungs of the ladder were not in any fixed hierarchy but varied in their order in different times and places. For example, while a disability could provide an effective cover story and eligibility for DSP, this did not always sit well with the person’s identity. Lewis (E1) had weighed up the range of stigmas he experienced, but being labelled as ‘disabled’ was out of the question, due largely to his insider knowledge of what this meant as a professional in the disability sector. While he was openly gay, his HIV+ status was the ‘one thing’ that was kept secret, while cancer enabled him to get ‘time off and stuff’.

The use of cover stories to not disclose aspects of stigmatised identities was discussed by participants in detail. Some gay men who were openly gay gave detailed explanations of why it was kinder they did not reveal their HIV status to family. Others disclosed their HIV status but not their sexual identity. Dennis (E4), who was recently diagnosed and one of the oldest participants, was open with his family about his HIV status but not his homosexuality after decades of heterosexual marriage, children and grandchildren. He used a suggestion of medical acquisition of HIV as his cover story.

Indigenous identity was not mentioned by a small number of participants until well into the interview process, but most Indigenous participants discussed HIV, sexuality and gender through an Indigenous cultural lens. That discussion emphasised the way their Indigenous culture and connection to country sustained health and wellbeing even though the place of LGBTI Brotherboy and Sistergirl identities was still contested in families and communities. The strain of clashes with the dominant settler culture lay behind their most serious challenges including homelessness and racist violence.

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Some participants ‘pushed back’ to create more social space for themselves, by being openly gay, and even openly HIV+. However, this required a high degree of social navigation and assertion, and the self-confidence to manage prejudice and hostility. Intersectionality has become a vital lens for academics and activist to explore inequality driven by the interaction of such stigmas and other social injustices, and how this shapes lives (Collins and Bilge 2016). Aspects of inequality can be structural, meaning they are built into social, medical and bureaucratic systems, but understanding this enables strategies to be developed to bring about positive change (Dill and Zambrana 2009). Just where each attribute, including HIV, gay, disability, Hepatitis C, age or Indigenous identity, would sit on the ladder of stigma and how these interacted, was unpredictable in each social situation.

The experience of Rory (E3) was that being gay, HIV+ and disabled was accepted in his circle of friends, but revealing he was on Hepatitis C treatment had met with an unexpected reaction when:

they dropped me out of the group so fast […] you’d think I’d just farted in their teacups (Rory, E3, T1).

Participants discussed how needing to remain vigilant about the potential for rejection made it challenging to enjoy social situations, and to develop mutually supportive social networks. Coming out could potentially reactivate the trauma of family rejection upon coming out, abuse by peers in adolescence, and HIV-related loss and shame. This might reinforce emotional numbing that stalls recovery from trauma, and sets-up a constricted life (Odets 2019). For example, Harold identified that in his childhood he was very introverted as he grappled with his intersection of identities.

Very introverted and locked away in my room and yard—I was into yards; gardening and serious—I was too serious (Harold, E2, T1).

Harold (E2, T1) struggled with how to express the intersections of his Indigenous and gay identities, leaving him feeling ‘I don’t know what to identify as or what my art should say’. He discussed feeling vulnerable and targeted by others with more power, with even LGBTI community spaces not necessarily safe. Harold saw both the defunding of QuAC and his personal targeting as abuses of power.

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AIDS Council folded or, you know, they were targeted and all the rest. I got beaten up one night outside a gay venue (Harold, E2, T1).

Harold described how prejudice meant he got poorer quality health care and other services, as staff judged, and people like him do not get ‘the same kind of advice and treatment as people that work and are seen as more worthy’.

7.6 Maintaining relationships

The biomedical breakthroughs in HIV treatment and prevention over the past few years have not immediately translated into changed social circumstances for PLHIV, particularly in relation to their relationships and sex lives. Ambivalence about homonormativity that privileges mimicry of heterosexual norms continues to be a factor in the evolution of gay cultures and practices (Croce 2014). As such, homonormativity privileges white, cisgendered, middle class men and so has been derided by theorists aware of the goals of the gay liberation era (Duggan 2002; Kilhefner 2010). The participants who had married women were keenly aware of the costs and benefits of performing heterosexuality to be socially respectable (Skeggs 1997). Despite the assimilationist pressures apparent in the marriage equality debate during this study, transgression underlies the particularity of homosexuality as a practice and has contributed to the unity within the gay community (Altman, 2013). Discussion of any damaging aspects of sexual cultures could appear to undermine the improved social status and superficial acceptance of LGBTI communities, so care was needed to open space for participants to be frank about their lived experiences, including domestic abuse; more than a few disclosed escaping such abuse from partners.

While AIDS Councils and government espoused a risk elimination paradigm for the first three decades of the HIV response in Australia, gay men have always used available knowledge to evolve a range of practices that manage and reduce risk (Prestage et al. 2009; Grov et al. 2014). In practice, intimacy and pleasure have often been afforded a higher value by sexually active gay men than official guidelines allow. For example, in the 1980s, body fluid monogamy emerged as sero-concordant couples negotiated an agreement to use condoms only when having sex outside their primary relationship despite ‘negotiated safety’ not yet appearing in safe sex guidelines and campaigns (Prestage et al. 2001, p. 283). To stay relevant, AIDS

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Councils had to catch up to the community by developing campaigns responsive to ‘the social prism of how lives are lived, paying particular attention to where sex and sexual practices sit in relation to those lives’ (Batrouney 2007, p. 14).

Social and sexual practices for utilising the new tools for prevention that have emerged in the biomedical era are still developing at community level, a process Kippax and Stephenson (2016) have described as ‘socialising the biomedical turn’ (p. 4). As Dominic observed, the biomedical tools available for prevention should change norms dramatically, given PLHIV on effective treatment do not transmit the virus.

The real conversation should be about if you want to ensure safety and have unsafe sex, then find someone who is undetectable and HIV positive. They actively go out and get treatment […] they’re actively keeping their blood work results up, they’re […] looking after their health. Where someone who says, ‘Oh, I had a test seven years ago and I’m still negative’, has been rooting around town throwing caution to the wind and not had regular check-ups and they’re telling their partners that they’re negative, then there lies the problem (Dominic, E1, T2).

PEP and PrEP were mentioned in the Queensland HIV Strategy 2013–2015, with the goal for a PrEP demonstration project, not full implementation (Queensland Government, 2013, p. 2). That project used a research protocol to make PrEP available for up to 2,000 people in Queensland. The number of gay-identifying men at high risk of acquiring HIV, mostly due to receptive condomless intercourse with casual partners, had been estimated at possibly over 30,000 in Australia (Zablotska et al. 2018). This meant the risk reduction potential of biomedical advances, including TasP/U=U, PrEP and PEP, and the place of community-led behaviour innovations such as sero-sorting and strategic positioning61 were stalled as the

61 Sero-sorting is when people choose sexual partners who have the same sero-status as themselves (i.e., HIV negative with HIV negative, and HIV positive with HIV positive). Strategic positioning uses information about the odds of transmission in different sexual activities to make decisions about risk management (e.g., oral sex is no or extremely low risk, whereas receptive anal intercourse without a condoms in high risk).

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Queensland Government disinvested in gay community mobilisation. Instead, the Strategy endorsed ‘peer education projects and outreach strategies to target populations rather than targeting MSM62’ (Queensland Government 2013, p. 2). This inexplicably excluded gay men as a target population even though most new infections were occurring in gay men.

Participants complained of a cultural lag in Queensland feeling that Queensland had not kept pace with the LGBTI culturally responsive social policy that occurred in other Australian states. As Jared described:

You’re treated like lepers here in the community because they’re still backwards—they believe that HIV kills you and it doesn’t, with the medication they’ve got nowadays […] They’re still in the dark ages (Jared, E3, T1).

Some participants had experienced a more informed attitude, during visits to other states, for example:

I think Queensland’s certainly—we’re probably five years behind […] There seems to be less ageism. There’s certainly less HIV phobia down there […] I was astounded by the amount of men that you walked up to in a sex club […] and they would say to you, “I don’t use condoms. Are you undetectable?” and you’d go, “Yeah”. Then they’d go, “Great”. (Dominic, E1, T2).

The opportunities that treatment as prevention, U=U and even PrEP offer to counter the myth that PLHIV are a threat to others, had not been capitalised on through broad community education. Some participants stressed that most people in the broader public, many in the gay community, and particularly MSM who do not identify as gay, were not aware of the existence of these tools let alone engaged in the reframing of living with HIV that the biomedical turn should enable. Since moving to regional Queensland, Edwin mainly has sex with men he described as ‘bisexual’ and summed this up:

62 The word ‘gay’ does not appear in the strategy, so ‘MSM’ includes gay men in this instance.

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I was quite surprised about just how people still perceive HIV positive people who are in treatment as being highly infectious and we're not (Edwin, E2, T2).

Edwin was excited about the potential of biomedical tools to increase sexual intimacy, but grappling with trying to educate partners and contacts on dating applications who thought that having unprotected sex with a person of unknown status was less risky than sex with a PLHIV with an undetectable viral load. He was repeatedly rejected due to ignorance and the illogical assumption that distancing people known to be HIV positive is ‘being careful’. In general, the online environment of dating apps was a bruising experience, particularly when combined with issues of ageing and being judged on physical attributes.

Participants struggled to internalise the implications of their undetectable viral load for relationships. Even recently diagnosed participants with an undetectable viral load and good connection to HIV services incorrectly thought they could transmit the virus, for example:

It’s still in the back of your mind that you’ve got HIV and it’s transmittable. Even if it’s non-detectable it’s still transmittable. So you’ve got to be more careful (Bruce, E4, T2).

People who had been living with HIV longer had negotiated safe-sex practices before the biomedical era, and after years of being ultra-cautious about preventing transmission were resistant to investing in changing their ways as they age (Grundy 1991). There was opposition to any relaxation of the use of condoms. For example, in response to being asked if being undetectable made any difference to sexual practices in a sero-discordant relationship, Luke, who could otherwise be described as sexually adventurous replied:

No because we always manage risk the same way. We always use condoms—it’s always a part of our shopping list (T1) [...] I always think of myself as radioactive […] on this protection thing, because I'm scared. I don't want to infect him […] I don't want him to go through any of it because from the start to the end it's absolute shit (Luke, E3, T2).

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Some participants trusted the science of treatment as prevention but remained concerned about the potential legal implications in Queensland of not using condoms or not disclosing HIV status, highlighting the, as yet, untapped potential for evidence informed law reform to act as a catalyst for changing attitudes. Warren contrasted this with the ‘real-world’ experience that the burden of responsibility is not shared, observing:

it’s always been up to me in this State to propose it. It’s never been proposed by anyone else. And I can say that with confidence, never has anyone said ‘Let’s use condoms’ (Warren, E2, T1).

Out-of-date laws were condemned as a barrier to ending HIV transmission and stigma.

What’s untenable is that you can’t maintain criminalisation around nondisclosure of HIV if you’re adopting a treatment as prevention model. It’s hypocritical to do it (Marshall, E2, T2).

The ongoing criminalisation of HIV transmission in Queensland reinforced stigma and risked the involvement of the police laying charges and taking matters to court that could be much better managed by public health practitioners able to mobilise support services (QPP Discussion Paper 2013). Even within the public health framework, a more informed approach about risk management was needed. Marshall (E2) described the way the Queensland Public Health Protocol had impacted negatively on his ability to be open about sexual activity with service providers, including a psychologist employed by Queensland Health. Even though he had an undetectable viral load, which meant he was not a risk to others, the Public Health Protocol had been activated instead of the psychologist providing assistance with his actual problem. This destroyed any hope of developing a therapeutic relationship.

Marshall’s critique called into question the legitimacy and effectiveness of HIV- specific laws and public health protocols and the way these may do more harm than good. The protocol is at its most illogical when applied to people with an undetectable viral load, as the evidence is clear that they do not transmit the virus. By not keeping pace with scientific evidence about transmission, the laws prevent

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open discussion of the socialisation of emerging technologies of risk reduction. This adds to the burden of stigma faced by PLHIV, a burden that most hoped would ease given ‘HIV is different now’63. HIV is different now, but in many respects, the social positioning of PLHIV still does not reflect that difference. For many participants ageing with HIV, the major difference was reduced access to non-clinical support services in the biomedical era.

With ageing, sex had often become less important than other social activities and interests, but most of the participants were in their 50s and 60s and it was rarely completely off the agenda. Only eight of the participants had a partner and one relationship ended between T1 and T2. The mutual support within those relationships permeated opportunities for day-to-day quality of life and positive outlook, as identified by Halkitis (2014) who observed that for coupled PLHIV of the AIDS Generation ‘maintaining a viable, vibrant, and health relationship was a powerful and effective emotional strategy to handle their diagnoses and allowed them to move forward with their lives and into the world’ (Halkitis 2014, p. 114). Some single participants were happy to have left abusive relationships behind, though the ending of relationships or rejection had also trigged suicide attempts by three participants. Although some participants expressed a desire to be in a relationship, most had given up hope this would occur. Jared (E3) had concluded that due to inability to achieve an erection there was no point getting into a relationship.

Down below doesn’t work, hasn’t worked for years now […] We tried Viagra, we tried needles, it doesn’t work and what’s the use of having a relationship if you can’t do that (Jared, E3, T1).

The complexity of life course impacts and struggles with expression of emotions and sexuality were emphasised by Clayton (E3, T2). He shared:

At my age we were pretty much the last of the Victorian era of thought […] we don’t talk about such things […] the young kids today don’t understand the shit we went through […] I mean I was

63 QPP campaign message from October 2013, and from HIV Foundation Queensland in 2014.

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molested as a child so I actually thought my gay side was coming from that, but I think I knew deep down that’s a handle to hang on which was just false (Clayton, E3, T2).

Andrew (E3) had also found the physical limitations of his disability interfering with sex, combined with HIV and disability stigma, made it unlikely he could find a partner.

Who wants to be with someone that's positive and basically half a cripple […] it ruins the mood so to speak […] Even just having a partner, I can't—I can only lay certain ways in bed […] So it makes it hard to find someone I reckon, that's going to accept you for what you've got (Andrew, E3, T2).

Place was clearly a significant factor in whether it was likely that participants in regional areas could maintain an active sex life. Those who had a partner when they moved to the area were generally content and felt supported day to day, but most participants were living alone in circumstances with few opportunities to meet a partner. A few participants were practitioners of esoteric sexual practices and reported being quite successful at connecting with ‘playmates’ in regional areas. These were usually lasting connections. Neil had responded creatively to his diagnosis.

I got into toys, bondage and all these other things basically that don't involve penetration […] So I have a lot of fun and without having to negotiate the safe sex thing […] that was part of my coping mechanism I suppose and it’s just grown from there […] not having that fear of having them say something [about HIV status] (Neil, E1, T1).

The online hook-up sites were described by participants as full of ignorance, stigma and rejection. For many this was a brutal and distressing environment that was best avoided, but also something they were drawn to from time-to-time with some trepidation.

One older and recently diagnosed participant had recently come out of a long-term heterosexual marriage and was interested in finding a male partner. However, he

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was finding this very difficult and was somewhat discouraged. In another location, a cluster of men in long-term relationships with women met for sexual encounters with each other. While one wife and her parents knew the husband was ‘a poofta’ before the marriage, for another the HIV diagnosis had forced the homosexual activity into the open, raising questions about sexual identity including the legitimacy of bisexuality. For men who did not come out until late in life they may have experienced what Clayton (E3, T2) described as ‘the mental torment, the questioning, the constant questioning, the forced lack of value’ about their homosexuality and self-worth. He observed that once he did come out ‘it was weird. I didn’t suffer depression again’ and he also stopped injecting drugs and relocated to regional Queensland.

Undetectable viral load and PrEP had not reduced the stigma and discrimination faced by PLHIV in this study but did provide some with psychological relief when they accepted that they could not pass on the virus. Rejection of PLHIV was still common and often cruelly expressed (Wallach and Brotman 2013), turning too many participants off attempting to have an active sex life. A recently diagnosed participant shared he was avoiding revealing his HIV status to casual partners. Optimism that new biomedical tools would positively change social circumstances for PLHIV is appealingly simple, but it underestimates the complexity of socialising the biomedical turn (Kippax and Stephenson 2016).

7.7 Conclusion

This chapter has explored a few major themes emerging from discussions with participants about their psychosocial needs and day-to-day circumstances as they age in regional Queensland. For some, living with HIV had been a rich source of connection and renewed focus in their life, but most attempted to fly under the radar in regional Queensland, which limited the development of mutual support systems. Most of the participants’ days and weeks were quite structured. For some, this served the purpose of filling in the hours and aided adherence to treatment despite memory problems, while for others a weekly timetable of regular activities overcame a tendency to inertia or retreat into self-protection by getting them out of the house to exercise and socialise.

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Whether an individual had been able to keep working, and whether they were single or partnered, also strongly affected quality of life. The flexibility to manage fatigue and periods of illness was critical to employment for long-term survivors, but few jobs accommodated this. The threat to eligibility for DSP inhibited exploration of capacity to contribute in the workforce and gain the benefits even part-time work would provide. Paid work will not be possible for many long-term survivors as managing their complex health care maintenance is already a ‘full-time occupation’, but for many there was a strong need to give back and contribute to society.

Focusing on the needs of others, and building a legacy through volunteerism to contribute to the common good was important to many of the participants. For a few, this extended to activism, including being open about their HIV status and homosexuality to educate the general community, but the defunding of QuAC and PD had ‘left a hole’ in the life of some participants. Others were volunteering with organisations where they felt it was necessary to hide their HIV status and even their homosexuality, which limited the ability to develop truly supportive reciprocal relationships. Although there were instances of the local community rallying behind a PLHIV who went public about their status, there were many more instances of harassment, including in the particularly brutal social media environments. Public housing neighbours were particularly problematic for some residents, but the public housing authorities expected them to resolve any problems themselves or live with constant harassment. Most participants did not have the financial resources to buy their way out of serious problems that arose; for example, by relocating to make a new start.

Most participants with anxiety and depression were aware of the beneficial role exercise could play in managing the conditions, and some maintained exercise programmes originally organised by the now defunded PD programme. A couple of participants had taken up smoking between T1 and T2 despite the evidence that this is particularly risky for PLHIV. Smoking was a stress management tool, suggesting cease smoking programmes for PLHIV will need to address isolation, stigma and other mental health pressures on PLHIV to prevent relapse. Depression is common with any chronic illness; however the overlay of decades of HIV-related social stigma and discrimination and homophobia, which limits the ability to develop mutually supportive social networks, added a heavy burden to the mental health struggles and

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limited their ability to utilise evidence-based mental health prescriptions. Stigma levels were intensified by geography, given the known background levels of homophobia in regional Queensland and residual ignorance about HIV, leading most participants to attempt to live socially undetectable.

In an expression of internalised ageism, the participants tended to negatively frame their reasonable adjustment to ageing, which intensified a sense they were somehow not living up to their own or gay community expectations. This occurred within a context of having led big lives in the past that others would likely have judged as quite successful and exciting, but now the participants usually preferred a quieter, possibly constricted, life in regional areas. The tensions and limitations of regional living were to some extent relieved by regular travel.

Projecting into the future, participants often had concerns about the quality of life they could expect, which strongly impacted psychosocial wellbeing. While not currently in a suicide crisis, a surprising number had a plan on standby to end their life in case quality of life became intolerable. Suffering had psychosocial dimensions in addition to any physical deterioration. The need for PLHIV to engage with the in- home support and institutional care sectors will increase and the aged care and disability sectors will be challenged to be LGBTI and HIV culturally competent and responsive. Some participants were blunt that they would rather kill themselves than face neglect and potential abuse in residential aged care. Australia has barely begun to prepare for the needs of PLHIV as they age, and with the emphasis now almost exclusively on biomedical solutions to HIV, there is a danger that the challenges beyond the clinic door are forgotten. As PLHIV organisations such as QPP, NAPWHA and GNP+ are beginning to advocate around the needs of ageing PLHIV using a quality of life lens, the next chapter will summarise the finding of this study to guide the necessary advocacy.

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Chapter 8 Discussion and Conclusion: Coping with Challenges to Ageing Well with HIV

8.1 Introduction

This thesis has examined the complex physical and psychosocial aspects of the lived experiences of older gay men and other MSM living with HIV in regional Queensland. Participants demonstrated much resourcefulness and histories of survival; however, this thesis considered the implications of the suffering these men have endured despite narratives that emphasise the positive aspects of living with HIV in the biomedical era (Kagan 2018). This suffering includes not just lived experience of physical symptoms and material deprivation, but also the range of feelings involved in ageing with HIV as a still stigmatised condition.

The social theory of social suffering is useful for critically reflecting on these lived experiences beyond the search for actions that assist coping and resilience (Bourdieu 1999; Frost and Hoggett 2008). This perspective puts neoliberal valuing of independent functioning and productivity in the free market into perspective, as it acknowledges the role of structural violence—the economic, political and social forces that do harm—in creating suffering.

Many of the participants in this study lived in poverty and had long-term experiences of living on DSP. Lack of resources limited the ability of individuals in precarious circumstances to protect themselves from the harmful effects when LGBTI human rights, and by association HIV issues, were politicised such as during the socially divisive Marriage Equality plebiscite in 2017 and the campaign against the Safe Schools programme (Law 2017). Stigma and discrimination, especially homophobia, intensified at the time of this study in Queensland (Ecker et al. 2019). The complete removal of state government funding of QuAC in 2012, and then federal government defunding of the innovative Two Spirits programme, was experienced by many participants as a homophobic attack on LGBTI communities and their institutions from the highest levels of Government. That syphilis and HIV rates increased in Aboriginal and Torres Strait Islander communities in North Queensland as cuts were implemented reinforced the perception these cuts were political rather than serving a

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legitimate public health purpose (Ward et al. 2015; Sara and McAllister 2016; Reeders 2012).

The traumatic impact of homophobia and the HIV crisis on the life course of participants has not been recognised in HIV policy in Queensland. The Queensland Government funding allocations to QuAC, and the withdrawal of support services for PLHIV beyond viral suppression continued during the course of this study (Howard and Porter 2012). The social suffering created by the retention of out-of-date laws criminalising HIV transmission has been neither reviewed nor given appropriate weight, although the framing of those laws reinforces attitudes that hinder efforts to reduce HIV-related stigma (QPP 2013). The suffering extends beyond the individual to their social networks, chosen family, PLHIV peer networks and LGBTI communities, which need community strengthening programmes to resist such harms. Some of these harms are ‘unanticipated consequences’ of historical interventions such as the Federal and State Government campaigns utilising the Grim Reaper to raise HIV awareness (Merton 1980, p. 285; Sendziuk 2003). In addition, living with HIV in this cohort was often associated with a clustering of depression, suicidality, problem drug use, and a form of post-traumatic stress (Kleinman 2010; Halkitis 2014). With such social suffering, the distinctions between health problems and social problems blur (Frost and Hoggett 2008).

Acknowledging participants’ social suffering across the life course is a necessary starting point in assisting their preparation for ageing. The imperative to emphasise the positive has been part of a broader project to lessen the burden of stigma and discrimination, but this needs to co-exist with a diverse range of lived experiences and the likelihood that ageing with HIV will not be easy for many of this first generation of PLHIV who are ageing. A key finding of this study has been that given the availability of consistent, high quality HIV clinical care many participants could frame the medical management of their HIV as ‘the least of worries’, while the accumulation of comorbidities and psychosocial concerns raised for them serious doubts about the quality of life that will be possible as they age. This created a sense that people not living with HIV seem to misunderstand the actual challenges of ageing with HIV, as their focus is too narrowly focused on HIV clinical management.

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The findings of this study contradict the optimistic narrative that improved treatment has normalised living with HIV so much that it will intrude little on the lived experience of PLHIV in the future (De Cock and Johnson 1998; Persson 2013; Mazanderani and Paparinin 2015). The participant perspectives made it clear that while ART had kept them alive and their HIV viral load was usually undetectable, meaning they could not transmit the virus to others, ageing with HIV involved significant complications. Participants were sceptical about biomedical optimism that ART has solved nearly everything, as they detailed their day-to-day coping strategies beyond viral suppression. The dominance of psychosocial concerns meant HIV was not experienced by people ageing with HIV in regional Queensland as ‘just like’ any other chronic condition, although there were hints HIV can fade into the background for people with secure social, financial and health circumstances, who were diagnosed and treated soon after acquiring HIV. However, in this study even recently diagnosed participants, including older participants who were diagnosed late as they were not gay community connected, were struggling to adjust to ageing with HIV.

Three major findings from the participants’ lived experience have implications for how to respond to the challenges associated with ageing with HIV being:

1. Ageing with HIV involved managing increased physical suffering, comorbidities and disabilities. 2. Biomedicalisation of the response in Queensland has neglected psychosocial suffering leaving PLHIV feeling the social contract of a caring LGBTI culture has been abandoned. 3. Ageing with HIV involved increasing complexity in daily living, which is driving a return to uncertainty about future quality of life. Below, I will expand on these findings, including how they relate to the current ageing and HIV literature, and will provide practical suggestions to improve the prospects for PLHIV to age well in Queensland.

8.2 Major finding 1: Ageing with HIV involved managing increasing physical suffering, comorbidities and disabilities

Given the high standard of HIV-related clinical care participants accessed, and the strong bonds most had with their HIV specialist clinicians, the current clinical

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management of HIV was ‘the least of worries’ for most participants. This was despite awareness ART did not fully restore health and immunological changes involving chronic systemic inflammation exacerbate ageing processes. The confidence about the quality of HIV management, however, did not extend to the broad array of other clinical conditions, including increased risk of cardiovascular events, obesity, diabetes, bone disease, cancers and frailty. Management of these comorbidities involved interaction with an array of specialists with varying competence in providing safe and culturally appropriate services to gay men, MSM and PLHIV, and complex treatment and care regimes amounting to a ‘full-time occupation’ for many participants.

The cumulative effects of the growing number of impacts on health and wellbeing, on top of the lasting effects of the social and political history of HIV on health and wellbeing, was wearing down coping capacity over time. Manderson and Warren (2016) have theorised about the dynamic interaction of ‘layered contexts’, exploring how structural factors including social exclusion and poverty can interact with and set up the conditions that produce chronic illnesses and a downward spiral of increasing illness, disadvantage and marginalisation (p. 479). They called the momentum of this almost inevitable trajectory ‘recursive cascades’ (Manderson and Warren 2016, p. 479). For years, participants in this study had been gradually adjusting as new limits to functioning emerged, needed to be understood and creatively managed and worked around. Fatigue had to be carefully managed, which limited participation in work and other activities. It was surprisingly common for HIV-related comorbidities to be in addition to pre-existing and emerging physical disabilities including debilitating pain, spinal injuries, ABI, limb loss, and stroke-related impairments. Many participants maintained a regular exercise programme as part of maintaining physical functioning, often with beneficial effects on depression.

A key complication was gradual cognitive decline, presenting as ‘memory problems’, which threatened independence by reducing the ability to self-coordinate appointments, travel and treatment. Participants had devised ways to manage adherence to treatment despite gaps in memory, though this was checked through direct observation by carers in some cases. In a few cases, it was also apparent that the circumstances and wellbeing of participants had deteriorated between interviews

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without the formal service system being aware of this or responding. At T1, participants expressed appreciation of the professional support received at crisis points (e.g., to deal with exploitation and abuse, or suicidality following relationship breakdown or death of pets), but by T2 some participants had lost track of where to turn for help with the closure of PD, the defunding of QuAC, and the limited services from QPP for long-term survivors unless adherence to treatment was impacted.

The core business of sexual health centres did not include addressing the social determinants of health, although some social work, financial counselling and psychological services were provided in better resourced locations like Cairns. Without non-clinical supports from services where they felt they belonged, the participants struggled to overcome psychosocial issues, such as a history of trauma including multiple bereavements, domestic abuse, discrimination within Indigenous communities and the LGBTI communities, exposure to race driven violence and issues such as homelessness and problem drug and alcohol use.

The QuAC Two Spirits programme had more than 20 years of experience using a whole of community approach that initially engages community Elders in each location to support Indigenous LGBTI/Queer/Brotherboy/Sistergirl people (O’Loughlin and Phillips 2011) when it was defunded during this study, but it has had some funding restored in North Queensland. Collaboration between QuAC via the Two Spirits programme, QPP and AMS could improve access to culturally safe and trauma informed services, but AMS need to demonstrate LGBTI Brotherboy and Sistergirl inclusion, competence and cultural safety. Townsville stood out as a location where PLHIV experienced a high degree of vulnerability and lack of effective supports.

8.3 Major finding 2: Biomedicalisation of the response has neglected psychosocial suffering leaving PLHIV feeling somewhat abandoned to their fate

Although the medical management of HIV was for most participants ‘the least of worries’, the dominance of a biomedical approach in Queensland meant their non- medical needs and concerns were marginalised and largely unaddressed. The biomedicalization of the HIV policy and service provision in Queensland coincided

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with the defunding of psychosocial supports to PLHIV once they were established on treatment. This left no formal mechanism to monitor or improve the social determinants of health beyond relying on residual individual resilience and resources. However, in common with most gay men alive today, participants had been adversely impacted psychologically and socially by homophobia throughout their life course, and by the AIDS crisis, which added to the complexity of their ageing process.

The challenges of ageing are likely to reactivate any unresolved past trauma and expose the way the deaths of loved ones and peers had depleted their social support networks (Odets 2019). However, the gay liberation generation has also fought for its human rights and experienced the empowerment of contributing to major social changes like decriminalisation of homosexuality. They learnt a lot from dealing with the epidemic, but one legacy of their HIV experience is a tendency to not plan for the future. Most had not prepared for later life, and many avoided thinking about the future. However, the gay liberation generation are likely to seek to age on their own terms rather than passively fit into heteronormative expectations (Rosenfeld et al. 2012). They have different expectations to the generation before them who often led a double life concealing their homosexuality to survive and fit in socially (Harrison 2005), and will resist being forced back into the closet.

The living day-to-day mode adopted by participants of this study in response to a ‘death sentence diagnosis’ had usually been maintained ever since. This finding is consistent with previous sociological studies on experiences of living with a chronic condition. Charmaz found that living in the present was an aspect of how people with chronic conditions typically ‘pull in to manage their illness’ (Charmaz 1991, p. 95), but she also warned that this empties a life, setting the stage for social isolation (ibid, p. 82). Participants in this study were tough survivors not prone to complaint and they shared gritty stories of survival full of resilience and courage, but their somewhat stoic outlook co-existed with deep concerns and uncertainty about future vulnerability with ageing. Some avoided any thinking about the future and planning ahead, as it provoked disabling anxiety.

The participants were usually appreciative of the formal support they had received in the past. However, the losses of peers in the AIDS-crisis years, and restricting their

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social networks as a form of self-protection, had left them with weak social networks for informal support. Their situation become even more precarious as the demobilisation of the volunteer-based Queensland gay community support to PLHIV from 2004 weakened the culture of care that had been built in the LGBTI communities during the AIDS-crisis years (Power 2011). State funding transferred into the professionalised brokerage of services via PD, but those services closed after one decade, leaving many of the participants without a reliable psychosocial support safety net.

As has been found in other jurisdictions, there was concern and resentment among participants in this study that their suffering had been ‘invisibilized’ (Squire, 2015, p. S209) as funded programmes reorientated to the utilisation of biomedical tools (Queensland Government 2013). Their experience of ageing was intertwined with stigma, co-morbid conditions, cognitive decline, depression and anxiety, poverty from years surviving on DSP, and lack of confidence that quality of life would be possible given depletion of psychosocial care and the poor stated of the aged care system. As Squire noted, the constraining of resources addressing psychosocial needs is also a trend in the UK and Africa in the biomedical era (Squire 2015; Squire 2013), and she was not alone in advocating more attention on psychosocial concerns (Kippax 2012). The findings of this study have added further evidence that the social and cultural factors that underpin health and wellbeing are often not available in non-urban areas of Queensland to support ageing well. As previously suggested by the profiles of PLHIV developed by Mikołajczak and colleagues (2018), urban PLHIV are coping better than those in rural areas.

The findings of this study also revealed that these members of the first generation to age with HIV in Queensland felt trapped by the way empowerment rhetoric had dovetailed with neoliberal individual responsibility policy and programmes to silence expression of their suffering. While participants who were coping well embraced a positive mental attitude and investment in their own wellbeing, the more vulnerable participants experienced the emphasis on individual responsibility as a sense of abandonment inconsistent with the culture of care they had contributed to building in the AIDS-crisis years. They invoked what could be called a nostalgia for the camaraderie of the past (Davis 2008). Although most participants subscribed to the self-empowerment approach to living with HIV advocated by activists since early in

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the epidemic (Callen 1990) survivor rhetoric tends to equate suffering with victimhood (Stringer 2014). Framed this way, empowerment rhetoric can block acknowledgement of the impact of trauma and its management (Herman 1992). Trauma is particularly complex for gay men who have almost all had their identity development neglected and rejected in childhood and then been overwhelmed by the events in each era of the AIDS and HIV epidemic (Odets 2019).

Considerable tensions remained about disclosure of HIV status, sexual identities, and disability, all of which may be required to gain access to appropriate services. As many participants articulated, living ‘normally’ may only be possible by concealing HIV status, but being on guard to maintain secrecy involves a significant psychological cost (Rai et al. 2018). Disclosure has been advocated by activists as a tactic to create social space and connection, but the costs may outweigh the benefits. Beyond communities where HIV is well understood, ‘activist traditions of disclosure might interact with systems of oppression they seek to challenge’ and in unintended ways reinforce neoliberal austerity (Reeders 2019, p. 113). A few participants with strong support networks had positive experiences of public disclosure in regional areas, but many more had experienced discrimination and their caution about disclosure seemed entirely justified.

Many participants were ambivalent about being categorised, aware that labels such as disabled, PLHIV and even gay did not express their full humanity. However, a person can position themselves, even unconsciously, as both within and resisting an identity as a strategy to redefine that identity, and in this way, produce change that expands the options for marginalised communities (Butler 1993; Ariss 1997; Whittaker 1992; Murnoz 1999). Some participants still saw identifying as a PLHIV in the tradition of resistance to an imposed spoiled identity and a way of contributing to the greater good (Goffman 1963; Sontag 1990; Whittaker 1992; Ariss 1997). However, a dilemma was apparent for participants in regional areas where self- protection was balanced against expectations to be authentic and ‘come out’. Barrett (2008) has highlighted that neurological decline may impede capacity to assess when it is safe to disclose, which raises questions about who will protect these individuals. Ambivalence extended to incorporating disability into identity, except where a particular non-stigmatised impairment could provide a useful cover story to meet HIV related needs without disclosure. Squire (2015) has explored the

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‘precarious tension’ around the management of HIV as a ‘partial secret’ in the biomedical era, which intensifies as resources are constrained and circumstances deteriorate (p. S209). Such resource constraints from 2012 in Queensland were impacting participants throughout the course of this study, and there was criticism that withdrawal of resources was ideological rather than good public health (Reeders 2012; Howard and Porter 2012).

Participants appreciated that this research project provided a platform to ‘talk freely’ with safety, as closure of services had left some without that opportunity other than the interviews for this study. The study provided a way to express their ideas without having to publicly reveal their status. Most living in regional Queensland were very conscious of the risks of social exclusion, and chose to carefully manage disclosure as a self-care strategy. In regional Queensland they sought to fly under the radar for self-protection, making it difficult to build reciprocal supportive networks. Adopting a low profile could exacerbate the ‘cycle of invisibility’ where LGBTI elders go back into the closet or refuse services to protect themselves from stigma and abuse (Silver Rainbow 2018). The findings of this research demonstrate that HIV adds another layer to the cycle of invisibility of LGBTI ageing articulated by the Silver Rainbow project. A few participants had publicly disclosed HIV status and gay identity to counter stigma and discrimination. This had largely been an empowering experience of resistance to dominant narratives about AIDS, an experience in common with participants in Positive Speakers Bureaus in most Australian states that were formed to support such advocacy work (Whittaker 1992; Paxton 2002).

Participants particularly valued past retreats where they met other PLHIV, and reported intensive knowledge transfer and progress in overcoming internalised stigma from these events. Past forums provided a way for PLHIV to share lived experiences and develop collective advocacy, something participants report was not possible for them through existing forums, such as TIM, as it restricted discussion to topics that promote the mental health of younger recently diagnosed PLHIV. In addition, the bonds formed at past events were the basis of ongoing connection to social support and participation. This aligns with Meyer’s (2019) insistence that resilience is a collective phenomenon, although he is often misread to portray resilience as an individual strength (Lyons and Heywood, 2016). Maintenance of social support groups in regional areas requires some financial investment and

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needs to be combined with practical strategies that participants recalled were effective in regional areas during the AIDS-crisis years. In that era, transport trees were organised and petrol allowances were available to enable volunteers and PLHIV to overcome the tyranny of distance. While online connection has been a location of painful exclusion for many, moderated and safe online networking spaces for PLHIV in specific localities could meet some needs. Such online spaces could not meet the need for face-to-face interaction, but could maintain a virtual kinship following limited face-to-face opportunities, and so provide some safety net.

While mental health concerns were common in the participants, there were also complaints that psychologists were generally not LGBTI competent, and access to psychologists was too restricted given the level of trauma many PLHIV carry. The model for eating disorders of up to 40 psychological services in a 12-month period (included on the Medicare Benefits Schedule from November 2019) would be at a more suitable level of intensity for the most traumatised long-term survivors (MBS Eating Disorders Fact Sheet, October 2019). However, to be effective, HIV and LGBTI competence needs to be including in skilling of the psychologist workforce, possibly as part of expanded suicide prevention and postvention work given the number of participants who had contemplated or attempted suicide.

Many participants credited past PD programming based on the evidence that exercise is beneficial for physical and mental health (O’Brien et al. 2004; Neidig et al. 2003) for their long-standing regular exercise programme to promote wellbeing and counter depression. More than half the participants were long-term users of anti- depressants but rarely mentioned a formal mental health plan. This is surprising given past findings that multiple mental health challenges were ‘the norm rather than the exception’ due to the trauma most PLHIV have experienced (Pence 2009, p. 636). Further research is needed about whether PLHIV are being medicated without adequate review and instead of addressing the trauma and the social determinants of health including the impact of minority stress (Meyer 2015; Odets 2019).

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8.4 Major finding 3: Ageing with HIV involved increasing complexity of daily living, which is driving a return to uncertainty about future quality of life

Coping with physical suffering including disability, and psychosocial suffering, when combined with ageing entails a return to uncertainty about the future. Uncertainty was a feature of the AIDS-crisis years when illness and death would strike unpredictably. While change has continued into the post-crisis era, some stability has been possible as ART enabled PLHIV to live with an undetectable viral load, rely more on their doctors, and opened space to promote wellbeing. However, as outlined in the previous sections, ageing entails increased comorbidities, increased disabilities, and a range of psychosocial challenges that impact health and wellbeing. Ageing with HIV heralds a return to uncertainty about the future, and anxiety about ‘what will become of me?’. It was rare for participants to have any plan in place about how to age well, and most anticipated continuing their current reactive improvisation as new needs arose, while trying to manage anxiety by not thinking about their circumstances.

Neoliberal approaches emphasise the importance of self-care as an aspect of individual responsibility (Rubinstein and Medeiros 2015) and while the participants in this study could be characterised as excellent ‘biomedical citizens’ who strived to be adherent and regulate their health and behaviour (Squire 2013, p. 98), many were on the verge of being overwhelmed as the complexity of their situation increased with ageing. In this study the complexity extended well beyond clinical needs, where multiple specialists needed to be accessed and co-ordinated, into a broad array of psychosocial concerns exacerbated by the level of hostility towards gay men and PLHIV in the regional areas of Queensland, as seen in Table 14.

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Table 14: Summary of domains of complex interactions with ageing as reported by participants.

Physical Psychological

Long-term survival: Resilience: - Changes to the body - Gardening/nature - Cumulative impact of - Higher education HIV/treatment - Trauma and grief - Comorbidities - Life philosophy and positive - Limits of self-care thinking - Aged Care Sector/NDIS cultural competence Mental health: - Quality of life - Assisted dying - Minority stress - Identity questions Treatment Experiences: - Depression and anxiety - Trauma - Relationship with doctors – GP - Suicidality and S100 - Problem drug and alcohol use - Treatment literacy/relying more - Mental Health Plan on doctors - Exercise - Co-ordinating multiple specialists - Pets - Proactive treatment/polypharmacy Stigma: - Managing regimen and side- effects - Discrimination - Pharmacy access - Advocacy and resistance

Discrimination experienced: Infection – Diagnosis experiences: - In medical settings - Disruption of life course - Creating positive growth Cultural competence needed: experiences

- Aged Care Services/NDIS Purpose and legacy - Psychologists - Giving back/volunteerism - Activism

Social Functional

Rurality: Routines: - Quiet-Busy continuum - Living day to day - Family connection - Structuring the day/time

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Mobility: - Adherence - Food and nutrition - Relocation vs settled long-term - Travel/car ownership Finances: - Maintaining a network - Income and poverty Stigma and discrimination: - Stretching income/savings - Work and flexibility - LGBTI and Indigenous intersectionality Cognitive decline: - Non-disclosure vs disclosure - Criminalisation - HAND - Peer support - Memory - Sex – serosorting, U=U, PrEP - Implications for independence - From family Housing: Support: - Mobility and affordability - Partner vs single - Public housing - Receiving support - Ownership - Giving support - Homelessness (Indigenous) - Peers/collective resilience - As refuge (renovation) - Local support group - Gay community connection Disability: - Defunding of QuAC and PD - ABI - Physical - Chronic pain - Fatigue - As a cover story

The list of issues is intended to convey the scope of concerns raised by the participants during semi-structured interviews. That scope provides an compelling indication that an undetectable viral load did not automatically lead to good quality of life, or even adequate daily functioning despite participants devoting considerable time and emotional investment into self-care. To organise this list, I utilised the PosQol domains64 developed by QPP and partners in the PosQol project to measure quality of life (Brown et al. 2019). This domain summary only reports a ‘surface level of meaning’ (Braun et al. 2019, p. 846) and so cannot convey the complex ways the issues are inter-related. The preceding chapters have explored in depth some of the

64 For consistency of type the first domain name ‘Health’ was changed by me to ‘Physical’.

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complexities that need to be understood to assure quality of life while ageing with HIV.

Intersectionality takes account of the ways people can experience cumulative disadvantages associated with their overlapping multiple identities, such as race, sexuality and disability (Carbado et al, 2013), to frame these issues. An intersectionality lens is useful for understanding the complexities of participant experiences, acknowledges the differences within identity categories, and the ways subordination of identities, such as gender and race, can overlap into systems of structural oppression and discrimination (Crenshaw 2017). A key legacy of intersectionality is the claiming of space for people experiencing different oppressions simultaneously to speak for themselves to demarginalise their unique lived experiences, which are greater than a mere aggregation of experiences arising from single identities (D’Cruz 2020).

Overlapping aspects of personal identity and the structural drivers of the social determinants of health are all relevant (Collins and Bilge 2016), but analysis also needs to account for the cumulate downward spiral of biosocial factors. Rather than merely overlapping, the issues were layered on each other to create synergies. These synergies are best analysed using an intersectional lens to improve understanding and inform the organisation of programmes and social justice campaigns (Collins and Bilge 2016). For example, for Indigenous participants, challenges to cultural pride and connection underpinned, rather than overlapped, all other issues including sexual identity, an insight into why programmes based on getting back to cultural roots, or ‘primordial prevention’, are so important in Indigenous suicide prevention (Black Dog Institute and LifeSpan 2017, p. 11).

As a foundation, services need to stabilise the circumstances that will enable PLHIV to age in place where they can maximise control over their environment and day-today routines, and age well as part of a caring community. However, increased complexity and challenges continued reliance on a self-care model for HIV management, especially given the cognitive decline being experienced by many participants as they age. Although improvement in treatment and stable undetectable viral load has opened a space for PLHIV to rely more on the advice of their doctor and ‘find a place where instead of living inside HIV, I could live beside HIV’ (Duffin

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2010, p. 17), that breathing space is threatened by the demands of ageing. As comorbidities and psychosocial concerns increase, participants were being drawn back into a focus on health maintenance routines, and their self-care became ‘a full- time occupation’, even if they usually avoided thinking about how they will cope once ageing threatens independence. There were indications from participants that this degree of uncertainty about the future reactivated the trauma of the existential uncertainty that characterised AIDS-crisis years, and reinforced the living day-to-day strategy involving ‘blocking HIV out of the mind’, as articulated in the Episodic Disability Framework (O’Brien et al. 2008).

The ACON Love Project has advised LGBTI people to ‘talk to peers about their transition into aged care’ (ACON 2015, p.6). Participants in this study had a horror of going ‘into’ aged care, meaning residential nursing care. Few knew the aged care system well enough to discuss anything other than residential care, and overlooked the aged care services that could come to them in their home and safely meet their needs. The Aged Care Sector was yet to gain their trust, and until it did, asking for support was to be avoided. In some cases, avoidance involved specific plans to suicide rather than risk going ‘into’ care.

8.5 Theoretical contributions

Systematic review of life course and ageing literature has highlighted that gay men’s lives follow a different pattern to heteronormative transitions and life stages (Fredriksen-Goldsen and Muraco 2010; McParland and Camic 2016). This leaves a need for longitudinal studies to better understand LGBTI lived experience and position for ageing. The AIDS-crisis represents a ‘turning point’ in the LGBTI historical context, and has left a cohort effect of trauma reinforced by ongoing stigma and discrimination (Odets 2019). The HIV epidemic remains an integral part of the historical and current context for all LGBTI people; whether HIV-negative or HIV- positive, the older gay and MSM PLHIV have been at the forefront of the AIDS-crisis. Research on how these HIV-related cohort effects interact with the compromises and agency developed in gay men’s formative and later years, and how this affects patterns of adaptation to ageing, remains nascent (Barrett 2008; Barrett and Stephens 2012). This longitudinal study was a significant contribution that explored

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the interplay of social change and individual and community development throughout the epidemic as the context for ageing.

Given the way social and political context has constrained the development of gay men, and put cumulative pressure on PLHIV, there has been a plethora of research on resilience underpinning programmes to resist stigma and negative stereotypes (Ariss 1997; Lyons and Heywood 2016). Some of that research has critiqued the individualistic focus on the development of personal resilience as serving a neoliberal individual responsibility agenda (Meyer 2019; Lyons and Heywood 2016). Resilience work has been blind to the way empowerment rhetoric can silence recognition of suffering (Stringer, 2014) as the ‘end of HIV’ narratives developed. Emerging narratives of concern are biomedical (over) optimism and HIV normalisation (Squire 2013), which emphasise the positive while failing to address the likelihood that ageing with HIV will not be easy.

Research is needed that can explore the nuances of the co-existence of resilience and suffering in the day-to-day life of ordinary people, without setting these up as binary and in opposition. Individual resilience can be little more than a holding pattern that requires enormous investment of emotional energy to maintain, unless collective support and services are in place to actually move towards a sustainable quality of life. Research and services are gradually taking account of the impacts of trauma in the lives of LGBTI people (Odets 2019), particularly in the response to high rates of suicide in LGBTI communities discovered via the National Suicide Prevention Trial. A life course approach is well suited to developing understanding of the differing cohort effects a younger generation of recently diagnosed PLHIV face, while also acknowledging the very different context for long-term survivors explored in detail in this thesis.

The small number of recently diagnosed participants in this study suggests that gay men and MSM living in rural and regional Queensland who are not gay community connected have not been exposed to the information that ‘HIV is different now’ and continue to react to HIV diagnosis as a death sentence even in the biomedical era. While this may not represent the experience of younger, urban PLHIV, it is also possible that the experience of living with HIV will not change dramatically while high

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rates of HIV-related stigma and homophobia continue to impact development across the life course, even in urban areas.

The 1960s Disengagement Theory suggested normalisation of the gradual psychosocial withdrawal of older people from society (Cumming and Henry 1961) but was quickly debunked when the perspectives of older people themselves were considered (Havighurst 1961). One claim made by the Disengagement Theory was that such withdrawal was useful as it made way for the needs of younger people. It is ironic that PLHIV in this study reported social withdrawal reminiscent of the social death the discredited Disengagement Theory was attempting to normalise. Such ‘invisibilisation’ has also been identified in HIV-related research in Australia and overseas (Race 2001; Squire 2015) and in work on LGBTI ageing in Australia (Silver Rainbow 2018). Avoiding being victimised by going back into the closet while vulnerable and isolated in aged care may be the preferred strategy for participants who had concealed their sexuality throughout the life course. However, for the participants who had cultivated pride in gay and/or HIV identity, it would be a step backwards that undermined mental health. A concerning number of participants articulated a suicide plan to avoid ‘going into’ aged care.

PLHIV have used a tactic of visibility to challenge stigma and discrimination (Paxton 2002). The participants of this study were sympathetic to strategies to normalise living with HIV, but many felt they were better matched to the psychological needs of younger, recently diagnosed PLHIV, who have been able to continue in the workforce with the life trajectory largely uninterrupted. However, that exclusively positive and normalising discourse conflicted with their need to collectively find ways to acknowledge and deal with the suffering experienced in ageing with HIV, and craft ways to age well despite an elevated burden of comorbidities, disability, and unrelenting social stigma and discrimination.

Over the past decades, ageing theories have moved beyond an emphasis on absence of disease and disability as a requirement to age ‘successfully’ (Rowe and Kahn 1997), to a focus on quality of life to age well regardless of health status or disabilities (Bowling 2005). While the individualised focus of ageing theory has usefully contributed to the development of a person-centred approach to care and support, it also neatly aligned with neoliberal notions of individual responsibility and

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abandonment of those unworthy of support. In the HIV literature, the individualised orientation extends to reliance on development of individual resilience to survive stigma and discrimination, rather than exploration of collective action to create safe social space and capital.

Increased life expectancy at the population level has meant more people are active post-retirement, and to address this, Erikson’s post-retirement stage of life was reworked by Bateson (2011) to emphasise the importance of meaningful activity and legacy development in the 10 to15 years from the mid-60s post-retirement, or ‘generativity’ as Erikson would put it (Erikson et al. 1986). This represents a time to compose a further life through review of life so far and alignment of activity with deeper values and passions. However, most participants in this study entered a type of retirement in the 20s or 30s, faced the death of peers early in adult life instead of in later life, and have had limited financial resources accumulated to facilitate meaningful involvement throughout their extended retirement. Nevertheless, they have participated in a collective response to HIV that involved creation of a culture of care and strong community controlled organisations, which is a proud legacy (Power 2011), and are still concerned with meaningful contribution and legacy as they age.

8.6 Limitations of the study

This study focused on gay men and other men who had sex with men. As such the findings may not be generalisable to other smaller populations of PLHIV in Queensland, including women and heterosexual men, or to urban contexts. Also, this was an ageing cohort, so the study does not capture the lived experience of younger PLHIV. However, 32 participants followed across two points in time is large cohort for a qualitative longitudinal study, and represented well the range of lived experiences of gay men ageing with HIV in regional and rural Queensland.

Limitations related to researcher subjectivity and qualitative longitudinal methods have been addressed in Chapters 3 and 4, respectively. Reflexivity is integral to qualitative research methods requiring rigorous self-scrutiny that could leave researcher blind spots unaccounted for. While there is little consensus on how to apply qualitative longitudinal methods in health research, the approach used for this research is thoroughly documented in Chapter 4 and consistently applied well- established processes. The dynamic nature of the qualitative interview, involving

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trust and power dynamics, and the positioning of the researcher in combination with the time and place of the research all contributed to the co-creation of the data. This has been acknowledged throughout the thesis and is a strength of the research. However, the involvement of subjectivity is a double-edged sword that requires transparency and careful management, which is challenging with such a large longitudinal data set involving significant trauma and social suffering.

In writing this thesis, I made a selection of what to focus on in the large data set to explore the research questions. In relation to physical health experiences, I focused on disability, cognitive decline, relations with clinicians and uncertainty about access to care in the future. In the psychosocial realm, I focused on stigma and collective resilience, barriers to participation, relationships and everyday routines. I selected the issues that seemed most pressing and best captured the diversity of lived experiences. However, that selection has not exhausted the potential of the data set, and important issues were not addressed. Aspects of lived experience that were coded from the data set then set aside from deep analysis included death, suicide and voluntary assisted dying; early life experiences and gay identity; HIV diagnosis and coming out later in life; complementary therapies and practices; and legacy work.

Although this study was careful to be culturally sensitive, a key limitation of this study was the lack of a formal mechanism to explore and present the lived experiences of Indigenous participants within Indigenous protocols for knowledge sovereignty and sharing (Muller 2014). Soon after the study began, the Two Spirits programme of QuAC, an LPQ research partner organisation, was defunded removing the capacity to provide cultural oversight to the study. At present, a rebirth of Two Spirits programme overseen by an Indigenous Executive Advisory body is in progress, which may provide an avenue to explore the data provided by the Indigenous participants in the future (Queensland Council for LGBTI Health 2020); or another means of cultural engagement will need to be developed.

8.7 Policy implications

The findings of this research have significant implications for social and health policies that shape the laws and services relevant to the greying of the HIV population. The reshaping and reduction of resources to support PLHIV reflected a

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belief that new biomedical tools would ‘end HIV’, which underpinned the adoption of the British Columbia Model and the United Nations 90-90-90 goals into the 2013– 2015 Queensland HIV Strategy (Queensland Government 2013). To align with the Queensland strategy, Queensland Health reorientated funded services with the biomedical goals, but that focus neglected psychosocial considerations as funded programmes addressed only the transition from diagnosis onto treatment, and only the needs of longer-term survivors not adherent to treatment (QPP 2018). A 90-89- 95 cascade had been achieved by 2017 in Australia (Kirby Institute 2018), but the lived experience of participants in this study suggests achieving an undetectable viral load has not solved a broad array of challenges faced by the first generation to age with HIV.

This research was designed to make a difference by contributing to positive social change of circumstances (Collins 2013) that will support ageing well with HIV. The lived experience of participants cannot be separated from the benefits and constraints of living in regional Queensland. Neoliberal pressure to consider HIV a chronic illness to be ‘managed in private by affected individuals’ (Kagan 2018, p. 108) too easily reinforces the need to remain socially undetectable in regional areas, adding to what Race (2001) dubbed the ’undetectable crisis’ of anonymity and invisibility that emerged after the AIDS-crisis years (p. 167). In part this was driven by a need for better representation of what it meant to be gay, to move away from associations with death, shame and fear of sexuality (Kagan 2018; Odets 2019). However, if this moving forward relies on erasure of the memory and impacts of the AIDS-crisis years, then PLHIV face social death (Crawford 2019).

While biomedical advances have vastly improved the life expectancy of PLHIV (Antiretroviral Therapy Cohort Collaboration 2008; Murray et al. 2009; May and Ingle 2011) this research has highlighted how quality of life for positive people is not assured. ART does not even fully restore physical health (Deeks 2011). There is a danger that the withdrawal of psychosocial services has left too many long-term HIV survivors abandoned to cope as best they can in isolation as they age. As psychosocial support for long-term survivors on ART is no longer available, one option was to turn to the aged care system. However, while often not well-informed about the aged care system, participants had faced much stigma and discrimination

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in the past and were apprehensive about dealing with another round of damaging battles for basic respect in a new sphere.

The National LGBTI Ageing and Aged Care Strategy launched by the Federal Government in 2012 included LGBTI awareness training for the aged care sector (Butler 2015). However, raising awareness about HIV was not an objective of the Silver Rainbow programme that delivered that training (Silver Rainbow 2020). By June 2018 QuAC, the Queensland Silver Rainbow training provider, had trained 430 aged care workers in Queensland on LGBTI awareness and inclusivity (QuAC 2018), but that is only a small proportion of the workforce. High turnover, which would dilute the impact of the training over time, has been identified as an issue for the aged care sector (Aged Care Workforce Strategy Taskforce, 2018). There are also indications that attracting qualified staff is more problematic in regional areas than retaining staff (O’Loughlin et al. 2017).

The intention to prepare the range of aged care service providers to be LGBTI inclusive and HIV competent needs to be taken to scale until it is embedded in the ongoing client centred care of the agencies in regional areas, where few options means limited choice of provider (Butler 2015). Bringing the full range of aged care providers up to standard will be an intensive body of work given PLHIV are spread across the State, and key providers are faith-based organisations yet to demonstrate they are LGBTI inclusive or safe (Commonwealth of Australia 2017). That process could be set back by the proposed Religious Freedoms Bill 2019 if it entrenches a right to refuse service on religious grounds (Kirby 2019). It is imperative that faith- based organisations and other providers reach out to LGBTI communities to state explicitly and demonstrate by actions they are inclusive, or it will be assumed their claims that ‘we treat everyone the same’ are actually heteronormativity and the antithesis of person-centred care (Barrett and Stephens 2012).

The follow-up Action Plan to the National LGBTI Ageing and Aged Care Strategy released in 2019 by the Federal Government included an expectation that consumer needs be regularly reviewed by their doctor and key staff as ‘further information comes to light on the emerging impacts of HIV and ageing’ (Aged Care Sector Committee Diversity Sub-Group 2019, p. 19). The capacity of the aged care sector to deliver on such expectations is in doubt given the challenges identified by the review

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of the National LGBTI Ageing and Aged Care Strategy (Commonwealth of Australia 2017) and the ‘shocking tale of neglect’ described by the Royal Commission into Aged Care Quality and Safety (Commonwealth of Australia 2019, p.1).

The weakened social networks of PLHIV due to stigma, family of origin rejection, and loss of partners and chosen family due to AIDS, mean they are more likely to need to rely of formal care systems for aged care (Shippy and Karpiak 2005; Siou et al. 2017). Where participants were supported by a co-resident receiving a carer’s pension there was a high degree of satisfaction with the arrangement, even though the carer role was testing the capacity of one participant. Although frailty and cognitive decline could mean residential nursing care is ultimately unavoidable, in most cases in-home services will be more appropriate for many years to come. However, given the way these participants and other gay men treat their home as a refuge from a hostile world (Moran and Skeggs 2004), service providers need to build trust so participants will be comfortable allowing them into their safe space. As was occurring for Jared (E3), visiting home nursing services can mitigate or at least delay the need for residential aged care.

The interim findings of the Royal Commission confirm the fears of PLHIV about residential aged care. It was not unusual for participants to disclose they would kill themselves before it became necessary to enter residential care, or if quality of life deteriorated and there were ‘no good days anymore’. This disclosure was presented in a matter of fact way with details of how suicide would be carried out. If all else failed, non-adherence to polypharmacy regimes was contemplated, essentially a form of voluntary euthanasia. The central importance of quality of life issues gets very real when it is made so explicit that it is a matter of life or death. This positioning was accompanied by little discussion or awareness of in-home support options that PLHIV could access to age in place. Mobilisation of in-home care has been possible when a person says they will kill themselves if forced into residential care, illustrated well by the case study Bob, an Indigenous Elder, cited in Ageing in Australia (O’Loughlin et al. 2017, p. 121).

Peer navigation support is increasingly provided to support consumers manage the complex systems around a range of health and care services and equalise access for marginalised precarious populations (Cargill 2013). The Peer Navigator Model

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QPP is implementing to transition newly diagnosed people onto treatment could be rescoped to assist older PLHIV navigate the aged care maze, and provide a point of contact for long-term survivors needing advocacy support. There are long waiting lists for in-home support services meaning changes to care levels need to be anticipated well in advance.

The 3rd National LGBTI Ageing and Aged Care Roundtable was informed by this study and agreed that LGBTI Community Visitor Schemes (CVSs) are working to meet important needs of elders, but there is a need to scale up to regional areas and increase ‘accessibility and intergenerational activities’ (National LGBTI Health Alliance 2019, p. 9). Not only is the CVS adaptable to areas with low population density, it can reach into residential care facilities and provide a minimal safety net for people who would otherwise have no visitors to provide independent eyes in the institutional setting. To make the most of the potential of the CVS it would need to be significantly scaled up as QuAC is currently only funded to operate CVS in South East Queensland and to cover the cost of local transport. The capacity of CSV volunteers to form care teams as occurred in the AIDS-crisis years could also be explored.

Creating opportunities for meaningful participation in regional Queensland via volunteering could help meet the need that participants had to ‘give back’ by contributing their skills and time to society, just as many did in the AIDS-crisis years. Such generativity is fundamental to good mental health and ageing well, as described by Bateson (2011) and Erikson and colleagues (1986). PLHIV, who have the capacity could be volunteers in CVS and/or be allocated a visitor, providing a valuable opportunity to contribute meaningfully through mutual exchange and break down isolation.

Peer navigators are increasingly favoured as a relatively inexpensive way to assist PLHIV to overcome barriers to accessing services (Broeckaert and Challacombe 2014), and given the need to overcome the complexity and distrust of the aged care system peers could encourage help seeking. Participants would rarely accept residential aged care and talked of ‘going into’ aged care almost as if it were a form of incarceration that removed personal control and agency. The necessary navigation assistance to access support and maximise independence (e.g., in-home

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aged care services), could be provided by expanding the scope of the QPP peer navigator service beyond a focus on the recently diagnosed. A social support safety net could also be built via volunteer-based LGBTI community initiatives to reduce loneliness and prevent suicide, particularly when no one else is monitoring the wellbeing of a PLHIV living alone. A starting point to achieve this would be a scale- up of the QuAC CVS to regional areas and inclusion of elders not in receipt of a Commonwealth Aged Care Package.

There have been some attempts to support PLHIV to prepare better for ageing, such as workshops on advance care directives during Dying to Know events run to increase death literacy and preparation (Anastasios 2010). Although such end-of-life planning is valuable, there is also a need to plan for living and ageing well. Such ageing literacy activity could be the focus of retreats using art therapy methods that all PLHIV in different regions could be supported to attend (Blausey and Awais 2013). Retreats could build networks between participants who are otherwise isolated, and inform a collective voice. In line with the GIPA Principles (UNAIDS 2007), capacity building and administrative support is necessary to maintain an effective collective consumer voice as an indispensable component of network building between service providers in regional areas. A collective approach would enable a safe feedback loop for continuous co-design and improvement of services (Cooper et al. 2014).

Although rates of physical impairment and neurological decline were high in participants in this study, there was little awareness of the disability sector nor signs of collaboration with disability networks or activists. The potential for collaboration between PLHIV and disability empowerment movements (Solomon et al. 2014; O’Brien et al. 2008) remains an undeveloped resource. Indeed, given the small numbers of PLHIV in many areas of the State, it may be productive to foster collaboration between people with a range of disabilities and chronic conditions, LGBTI locals and allies, and PLHIV for mutual support and the building of collective resilience. Such collaboration occurred at a policy level in the past to work on issues in common, and Thorne Harbour Health remains a member of the Chronic Illness Alliance that formed in the AIDS-crisis years (Chronic Illness Alliance 2019). However, at the local level this will require the creation of safe spaces for all the identities and sensitivities involved in such a diverse alliance. This is not a

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replacement for HIV-specific spaces, but a way to build a sense of collective support and involvement; a degree of safety and power in numbers.

The lived experience of older PLHIV needs to be listened to, both the suffering experienced and the gritty survival strategies that people have evolved. One practical way to do this would be to continue this longitudinal study with regular semi- structured interviews over the next 20–30 years, and to add photovoice methods (Sutton-Brown 2014). Photovoice images and accompanying narratives could become art exhibitions to raise the profile of PLHIV experience and reduce stigma in regional areas. Participants in regional Queensland would need the option of anonymity despite disclosure being positioned as a prerequisite of anti-stigma work by the similar project, Through Positive Eyes, project involving 130 HIV+ arts activists (Mendel and Gere 2019). Even with anonymity, creative utilisation of photovoice could reveal much about the daily life and perspectives of PLHIV to humanise their experience and reduce stigma. Art therapy, along with other wellbeing programmes, has a role to play in managing HIV-related trauma (Landy 1993), and while utilised by PLHIV organisations such as Positive Living Victoria, this has not been funded in Queensland.

Activism at the global level to achieve universal access has focused attention on the 10-10-10 left behind. GNP+ has issued a challenge to achieve universal health coverage by ‘putting the last mile first’ (GNP+ 2019) including removing legal provisions ‘barring the way to health’ (GNP+ 2019b), to ensure programmes tackle structural disadvantage and exclusion. Out-of-date laws in Queensland are an example of counterproductive legal provisions (QPP 2013).

A programme to support PLHIV who are not exercising to become more active should be developed, along with practical supports to ensure adequate nutrition. Given the evidence smoking is highly risky for PLHIV (Hellenberg et al. 2013; Fitch et al. 2013), interventions could prioritise smokers to reduce anxiety and mild depression through exercise combined with face-to-face interventions based on known theories of behaviour change (Brown et al. 2013). There is insufficient evidence that vaping as a substitute for cigarettes decreases harm (Murphy 2019). Strategies to manage psychosocial stresses could also help reduce problem use of drugs and alcohol (Brown et al. 2013).

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Services are needed that strengthen connections between PLHIV and amplify their collective voice. At the service level, the limitations of the current peer navigation model need to be acknowledged. Even with good supervision, peers without professional qualifications and experience will struggle to effectively respond to the array of challenges faced by newly diagnosed people, particularly those burdened by social disadvantage, mental health issues including trauma, and other health problems including disability. Peer navigation needs to be embedded within and facilitate the support of a peer group.

The journey has just begun for the first generation to age with HIV, and the path ahead is likely to be very challenging for many. The social contract these participants invested in to build a culture of care during the AIDS-crisis years needs to be revisited by LGBTI communities. To respond adequately to the challenge of ageing with HIV, both LGBTI and HIV communities need to mobilise a resurgence of the community spirit similar to what occurred in the AIDS-crisis years (Power 2011); once again the community needs to care for its own. Such mobilisation is essential to honour our elders, push back against stigma and discrimination, and create the breathing space, opportunities and decent care required to age well with HIV. We can continue to learn from the lived experiences and courage of the path makers whose generosity of spirit made this research possible.

8.8 Dissemination of findings

Outputs from this thesis in the forms of conference presentations, posters and one published paper (Gardiner 2018). Dissemination of the preliminary findings of this study has already contributed to breaking the silence around the considerable suffering many PLHIV are experiencing with ageing. Sharing the voices of PLHIV in regional Queensland has opened space for a national-level dialogue about the complexity of the lives of many PLHIV as they age, and recognition that quality of life is not automatically assured beyond viral suppression. The paper was subsequently included in NAPWHA’s literature review, which concluded that living with HIV and the impacts of ageing is a ‘new frontier’ for PLHIV and the organisations that serve them (Woods 2019). The role the research is playing in amplifying the voices of PLHIV in regional Queensland was publicly acknowledged in November 2019 by the President of QPP who said that their collaboration with The University of Queensland, including

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this study, has ‘shed light on our lives and stopped us being reduced to just statistics. Instead you gave us a face and a heart’ (Counter 2019).

The findings of this research are now being echoed in large quantitative studies across Australia. Although previous HIV Futures rounds found older PLHIV reporting poorer physical health and limitations in capacity to do daily tasks (Power et al. 2017), the HIV Futures 8 identified five broad profiles of PLHIV to illustrate differing patterns of health status and access to clinical services. The profiles representing people coping well made up the majority and were urban based. Rural participants were in the profiles that made up about a quarter of the respondents facing significant complexity, isolation and barriers to accessing services (Mikołajczak et al. 2018). My research has explored the advantages and challenges of living with HIV in non-urban areas of Queensland.

The HIV Futures 9 report highlighted quality of life struggles in more detail than previous national surveys, and detected some decline in wellbeing with the greying of the PLHIV population. It noted that self-reported wellbeing was substantially lower than in previous years and had decreased 9% since 2015/16. Contrary to any assumption that age would correlate with accumulation of challenges in a linear way, 50–64-year-olds were struggling more than other age groups, including PLHIV aged over 65 years (Power 2019). Many of the participants in this study fell into the 50–64 years age group and this study has been able to explore some of the key issues they were struggling with as HIV became ‘the least of worries’, and the burden of comorbidities increased with age. Informed by the emerging findings of the LPQ study and this study, QPP has increased the focus on quality of life with the implementation trial of the PosQoL quality of life scale across clinical, community and peer-led programmes during 2018 (Brown et al. 2018). For the first time in over 20 years, the HIV Futures 9 survey incorporated this PosQoL scale to report that about 37% of respondents rated their quality of life as poor or very poor. Financial stress was a factor in this, with 25–30% experiencing food insecurity (Power et al. 2019, p.5). The HIV Futures findings put into context that the suffering shared by participants in this study were part of a broader trend, and were important in understanding the meaning of these issues in the lives of PLHIV ageing with HIV.

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Futures 9 acknowledged their data could not easily identify the ‘complex’ and ‘broader social issues’ in lived experience (Power 2019, p. 19). However, this study was designed to explore those lived experience in more depth. Given the size of this longitudinal study and the larger LPQ study, these findings have implications for HIV responses beyond Queensland.

8.9 The final word

This thesis confirms that some older PLHIV are thriving, but the overall results provide a more nuanced picture of the challenging circumstances of many older PLHIV. At the beginning of the biomedical era, concerns about the potential challenges of ageing with HIV were beginning to be addressed (Slavin and Ogier 2011). However, ageing issues were largely overshadowed by excitement about the potential of biomedical breakthroughs around early treatment, the implications of undetectable viral load, and PrEP taken by HIV negative people to prevent HIV transmission. With early treatment, it was hoped newly diagnosed people would have little disruption to their life trajectory and be able to continue in the workforce, and with an undetectable viral load never have to be fearful of passing on the virus. It was envisaged that over time PrEP could break down tensions between gay men around HIV status to lessen the ‘sero-divide’ and ‘sexual apartheid’ many participants grappled with.

If appropriately socialised, the ‘biomedical turn’ (Kippax and Stephenson 2016, p. 124) remains an opportunity to lessen stigma and discrimination for PLHIV, and the psychological burden gay men have experienced around sex and risk since the 1980s. That burden has been often combined in a toxic way with internalised homophobia and shame about being HIV+ and/or a survivor of the AIDS crisis (Halkitis 2014). In 2013, when this study started, post-AIDS narratives around living with HIV promoted the image of a resilient, empowered and thriving person in an attempt to normalise and minimise HIV as a medical condition like any other (Kagan 2018). While group identities such as ‘gay’ or ‘PLHIV’ are nurtured by examples of the epic struggles and heroes that created more social space for LGBTI and PLHIV lives (France 2016, Halkitis 2014), the HIV epidemic continues to generate considerable suffering. This research highlighted the synergies between ageing and the uncertainties and other ways HIV is not just a disease like any other. It remains

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‘the most political of diseases’ (Altman and Buse 2012, p. 127) unlikely to be normalised any time soon even if no longer as catastrophic as in the AIDS-crisis years (Squire 2013).

The voices of PLHIV are the backbone of this thesis; for them there is no end to coping with HIV. The study has acknowledged both the resilience and the suffering the participants shared, and suggested practical responses to their lived experiences and expectations.

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Appendix

Appendix 1 – Information for participants

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Appendix 2 – Consent form

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Appendix 3 – Guide for Interview One

Living Positive in Queensland Interview Guide – Interview One

Interview length: usually 60 – 90 minutes.

1/ Introduction:

- Thank for participating - Explain purpose and importance of the study and their involvement given the views of positive people are important. - Ethical issues- confidential etc. - Hand in the list of resources/support. Explain that you are not a professional counsellor and should participant want to get some support- we provided a list of resources - Sign consent form

(Start with broad open-ended questions and focus in on key research themes)

Check/confirm personal information

 Demographics (most of this information is collected prior to interview, however, do check/confirm…): age, location, gender identity (including trans*, intersex, all and none), sexual identity, income source, employment, year of diagnosis, CD4 count at diagnosis.

2/ Locality: “How did you come to live in XX….?”

 “What’s it like to live here….”  Involvement in community, thoughts about locality. Does your HIV status impact the extent to which you are involved with the local community? Why? How?  Do you have a sense of community? Is it important to you?

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3/ “Tell me about your life (contexts of life)”

 How did you get here? What are some of the most important events in your life that got you where you are today?

 Tell us about your family, friends, who do you see regularly, how do you interact with them? We decided that, although we will continue to bring a blank timeline to the interview, it will no longer be a key element of the interview. We will be using it as it as aide if the participant is not very talkative, or if after asking all other questions we still have time- then may use timeline as a summary of key events in the participant’s life. The timeline may help the interviewer keep track, and may be a good aide for participants with memory/cognitive issues.

4/ Social Support

 Where do you get your support from? Who, what sort of support.  Who do you give support to?  Your experiences with disclosure, stigma/discrimination?  Examples/positive stories of how to deal with LHIV (resiliency)?  Are you ever lonely? describe, stories– explore/unpack concept  How do you deal with being alone (strategies etc.-don’t just focus on negative would be interesting to unpack how people cope with social isolation)

5/ Sex life/relationship – if the participant says s/he has had no sexual relationships for an extended period of time (or hints that “s/he couldn’t be bothered anymore”), we are still interested in whether s/he sees him/herself as a sexual being? Is there a part of him/her that is a sexual identity? If so, what are the ways in which s/he expresses their sexuality/identity (may be accessing services online; may be reflecting etc.)?

. Relationships/negotiation . Episodes of disclosure and impact on decision making . Perception of transmission. Perception of risk, risk taking (themselves and potential partners)

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. Have you heard the expression ‘treatment as prevention’? What does it mean to you – what do you think about it?

6/ Health and wellbeing…now that we talked about your sexual life and relationships, tell me about your other areas of health/wellbeing. Has your health changed over time? How? (use timeline to do this, and/or write and draw techniques)

 Tell us about the HIV services/ other services you access- what services are you accessing? (HIV-related; sexual health related; other health conditions…) Where? (sexual health checks done by GP or s100 provider?) How often? Easy/difficult- why? Example stories… What services would you like to be able to access and in what form? What other care/support would you like to be able to access and in what form?  How do these services work together? How do you manage your health and complex conditions/co-morbidities?  What makes a good health practitioner? Have you experienced discrimination in health care settings?  Are you trying to stay informed on HIV-related and other health matters? If so, what sources of information are you using (e.g., which internet sites, which online groups)?  What do you think about the funding changes that have happened in Qld?

7/ Ageing

 Do you ever have thoughts about getting older?  What is it like getting older? Positives/fears.

8/ What do you anticipate happening for you in the next year?

9/ Conclusion

 What are some of the things that you do which help you with day-to-day life/ things that make you happy?  Is there anything you would like to add?

(Finish on a positive note)

Last updated 1/11/2013

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Appendix 4 – Guide for Interview Two

Living Positive in Queensland Interview Guide – Interview 2

Interview length: usually up to– 90 minutes.

1/ Introduction:

- Thank for participating - Explain purpose and importance of the second interview - Ethical issues- confidential etc. - Hand over the list of resources/support. Explain that it has been updated and that at least one of the key services (i.e., Positive Directions) have gone. Sign interview 2 consent form.

 Start with broad open-ended questions and focus in on key research themes.  Look at interview 1 and draw on the main things to follow up on and interweave through interview 2.

2/ Locality

Since we last spoke, what has been going on living in here…? Has anything changed?

If participant has moved since last interview

 Why did you move…?  What’s it like to live here….  Involvement in community, thoughts about locality. Does your HIV status impact the extent to which you are involved with the local community? Why? How?

3/ Life experiences

 What are some of the things that have been going on in your life since last year?

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 How are you going financially? Have you made any adjustments in the last year?

4/ Social Support

 Since we last spoke, where have gotten your support from? Who/ what sort of support?  Who have you given your support to in the last 12 months?

 Are you ever lonely? Do you ever feel socially isolated? Can you describe your experiences of these, give examples?

Use scales to measure:

 a. Social disconnectedness/network analysis scale (Cornwell and White, 2009)  b. Perceived isolation/internal (measured via short Friendship scale, Hawthorne, 2006- already approved for use in the interviews)

 Has doing the scale prompted any new thoughts?

 How do you deal with being alone (strategies etc.-don’t just focus on negative would be interesting to unpack how people cope with social isolation)

Positive Directions

 What are your thoughts and experiences of Positive Directions going?  Where are you getting your support from now that you used to get from PD?

 In the last 12 months have you experienced any stigma and / or discrimination?

5/ Sex life/relationship Since we last spoke, what has been happening with your sex life/relationships? Any changes? . Relationships/negotiation . Episodes of disclosure and impact on decision making . Perception of transmission. Perception of risk, risk taking (themselves and potential partners) . Has the availability of treatment as prevention and PrEP impacted your sex life? How does it work for you ‘in real life’?

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6/ Health and wellbeing

 How’s your health been in the last 12 months?  Since we last spoke, where have you been accessing your health services? Any changes? Social media/ E Health

 Do you use a computer to access social media? Health-related information?  Do you have a myGov account/ eHealth account? 7/ Aging

 Since we last spoke, have you had any thoughts about getting older?

For those on a DSP  Do you think of yourself as living with a disability?  Has the review of the DSP affected you?

 When you hear about the ideas like living with HIV and having multiple comorbidities contributing to premature aging, what do you think about that?  Do you have any experience of accessing support via Aged Care Services? Are they, or do you think they will be HIV competent/ friendly?

8/ What do you anticipate happening for you in the next year?

9/ Conclusion

 In the last 12 months, what are some of the things that you have been doing which help you with day-to-day life? / Ways that you care for yourself?  Is there anything you would like to add? / Lessons that you’ve learned that you think are important to share?

(Finish on a positive note)

Last updated 10/11/2014

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Appendix 5 – Newsletters to participants: November 2013

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Appendix 6 – Newsletters to participants: April 2014

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Appendix 7 – Newsletters to participants: July 2015

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Appendix 8 – Newsletters to participants: September 2016

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Appendix 9 – Ethics approval letter

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