Ageing with HIV: a qualitative longitudinal study of the lived experience of older homosexual men in regional Queensland

Abstract

BackgroundPeople 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.PurposeThere 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.MethodsThis 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 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.FindingsThe 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 ImplicationsRegional 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.