Mupambireyi, Z; (2017) Peer networks and social support and its influence on young people's experiences of growing up with HIV. Doctoral thesis , UCL (University College Library).

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Abstract

As access to paediatric antiretroviral therapy (ART) continues to improve in sub-Saharan Africa, a relatively new and historically specific cohort of HIV-perinatally infected young people has emerged. They are now surviving into adolescence. These young people have complicated clinical needs which includes drug adherence and status disclosure. However, their ability to meet the clinical demands of HIV treatment, necessary to live long and healthy lives, are undermined by the challenges they face, not least, how they manage their HIV within their social lives outside of the clinic. Despite the emerging recognition that what happens outside the clinic significantly influences how young people conform to clinical guidance, there has, to date, been little exploration of the social lives and psychosocial needs of young people living with HIV outside of the clinical setting. Adopting a bounded agency theoretical approach, this study sought to explore the interplay between experience of social support, including its absence, and young people’s engagement with HIV treatment; with a particular focus on how young people manage their own HIV disclosure in both informal and formal peer networks. I draw on a longitudinal qualitative research study with HIV perinatally infected young people (11-13 years) participating in the AntiRetroviral Research fOr Watoto (ARROW) clinical trial in Harare, Zimbabwe. 26 young people were involved in up to three waves of in-depth interviews, 12 participated in focus groups discussions and 12 kept audio diaries. Additional interviews were held with 10 connected carers / significant others of the young people and five healthcare workers delivering clinical care to the young people in the study. Findings challenge normative representations that young people are too young and immature to understand diagnosis and might recklessly disclose. Young people have a far more nuanced understanding of the social risks of HIV and the power that it has to alienate and change the way they are viewed and treated by their friends than the general belief. Disclosing status to friends is a thoughtful process and having considered the consequences, the majority of young people choose not to disclose. The findings demonstrate that young people are not passive beings but active agents as they are directly engaged with the decision to tell or not. However, their capacity to control disclosure is disrupted by multiple factors. The thesis also explored the role of support groups. Support groups were perceived as a safe social space for learning and acquiring HIV information. The study provided an example of how participatory research tools and audio diaries can be used to illicit data from young people in resource limited settings.

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