Living with HIV in regional Queensland: social ties, care and support in managing a long-term complex chronic illness

A thesis submitted for the degree of Doctor of Philosophy at The University of Queensland in 2017 by Katarzyna Bolsewicz ”With advancements in highly effective anti-retroviral treatments (ART) to drastically reduce HIV transmission and facilitate healthy long-term living for HIV positive people (thereafter referred to as positive people), the perception of HIV has changed from a terminal to manageable illness. The prevailing policy discourse around HIV as a chronic manageable illness may not however represent the lived reality of people living long-term with HIV. For many, living with HIV means managing multiple comorbidities at the intersection of biologic, social and structural factors that requires resilience and ability to navigate various systems of support. Within neoliberal policies or reduced social spending and formal support services for the vulnerable populations, many positive people are left responsible for self-care. As a first generation of living with HIV long-term, they navigate uncharted waters, facing health and support needs which are not well understood.This PhD thesis examines the social context and the social processes implicated in living long-term with HIV in regional Queensland, Australia. It is embedded within an ongoing larger study Living Positive in Queensland, funded by the Australian Research Council, where up to 72 long-term positive people over the age of 35 from regional Queensland were interviewed annually over a period of three years (2013-16). It responds to the needs of the leading HIV organizations for a Queensland- specific research into the care and service needs of positive people who live regionally. Regional living comes with a set of additional challenges for positive people, yet there is virtually no research on the topic.For this PhD 32 long-term positive people (men and women) were interviewed annually over two years. Qualitative longitudinal research (QLR) methodology involving data analysis at each and across time points was employed to examine participants’ social practices on the continuum of care. Practices examined include adherence to treatment, forming and using social networks and social ties to manage everyday life, and caregiving. Analysis of the changing macro and regional health systems, policies and cultural paradigms provided a background within which participants’ practices were examined.Findings illustrate that regardless of the level of vulnerability, the sense of agency implicated in gaining control over one’s life was a driving force in participants’ social practices on the care continuum. For the most vulnerable participants, however, the persistent structural barriers experienced over time, exacerbated by regional living, have undermined their resilience and limited their choices. It was the historicized social connectedness (or lack thereof, social deprivation) that mediated the relationship between the complexities of aging with HIV regionally and an individual’s sense of support and wellbeing in a changing policy environment. It was the ability to receive as well as give care and support to others that was instrumental in people’s day-to-day management of chronic conditions and of their increasingly precarious living.Together these findings question the prevailing policy discourse around HIV and contribute to the bio-social perspective on what living with HIV entails. Informed by the findings I argue that achievements of state should be measured by how well the state meets its social goals such as fair distribution of health and well-being and equitable social participation. Policies in Queensland and Australia need to strengthen rather than limit the programmes which enable positive people to meet their social needs.”