An ethnographic study of the everyday lives of young women living with HIV in Zambia

Although young women in sub-Saharan Africa are disproportionately affected by HIV, limited research has documented their lives with HIV. This thesis aimed to understand the impact of HIV on young women’s everyday lives in Lusaka, Zambia. I conducted a 12-month ethnography with seven middle-income young women living with HIV in 2017-18. Participant observation with the young women, their friends and families was conducted in their homes, recreational spaces, churches, health facilities, colleges and workplaces. Additional data were generated through participatory workshops, diaries and visual collages. The young women had previously participated in a qualitative study in 2014- 15. Data from the latter study were included for secondary analysis. Analyses were inductive, theory-driven and iterative. Methodological critique assessed how collage methods effectively enabled self-reflection among participants in their representations of their lives with HIV. This thesis also prompted critical reflections on ethics-in-practice in conducting research with these participants, and identified areas of ethical tension, including the negotiated researcher-participant relationship and protecting participants’ HIV status. Theoretical findings showed how young women enacted agency through employing strategies to navigate their lives, including secrecy and limiting disclosure. This enabled them to cope with a stigmatising environment and the tight restrictions that were sometimes imposed around disclosure, sexual relationships and treatment adherence. Temporal analyses explored the impact of HIV on the participants’ lives across time, showing how their everyday and biographical experiences were interlinked with the historical availability of ART. My findings provide evidence of these young women’s resilience, offsetting a historical focus on their vulnerability. I propose applying Reynolds Whytes’ term “biogeneration” to capture how young people’s lives are entwined lives to their biosocial-historical environment. I question overly-simplistic narratives urging routine HIV-status disclosure, and endorse support groups for young people living with HIV to provide critical safe spaces to share their experiences with their peers.