‘Not taking medications and taking medication, it was the same thing:’ perspectives of antiretroviral therapy among people hospitalised with advanced HIV disease

Abstract

Abstract Background Despite HIV's evolution to a chronic disease, the burden of advanced HIV disease (AHD, defined as a CD4 count of < 200 cells/uL or WHO clinical Stage 3 or 4 disease), remains high among People Living with HIV (PLHIV) who have previously been prescribed antiretroviral therapy (ART). As little is known about the experiences of patients hospitalised with AHD, this study sought to discern social forces driving hospitalisation with AHD. Understanding such forces could inform strategies to reduce HIV-related morbidity and mortality. Methods We conducted a qualitative study with patients hospitalised with AHD who had a history of poor adherence. Semi-structured interviews were conducted between October 1 and November 30, 2023. The Patient Health Engagement and socio-ecological theoretical models were used to guide a thematic analysis of interview transcripts. Results Twenty individuals participated in the research. Most reported repeated periods of disengagement with HIV services. The major themes identified as driving disengagement included: 1) feeling physically well; 2) life circumstances and relationships; and 3) health system factors, such as clinic staff attitudes and a perceived lack of flexible care. Re-engagement with care was often driven by new physical symptoms but was mediated through life circumstances/relationships and aspects of the health care system. Conclusions Current practices fail to address the challenges to lifelong engagement in HIV care. A bold strategy for holistic care which involves people living with advanced HIV as active members of the health care team (i.e. ‘PLHIV as Partners’), could contribute to ensuring health care services are compatible with their lives, reducing periods of disengagement from care.