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

Abstract Background Despite HIV's evolution to a chronic disease, the burden of advanced HIV disease (AHD) remains high among PLHIV on ART, due in part to treatment interruptions. TB is the most common cause of hospital admission and death in PLHIV. As little is known about the experiences of patients hospitalised with AHD, this study sought to discern patterns and forces driving hospitalisation with AHD which 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. Thematic analysis based in grounded theory was used in conjunction with the Patient Health Engagement model to analyse interview transcripts. Results 20 individuals participated in the research process. The most distinct pattern to emerge was the repeated periods of engagement versus disengagement with HIV services. This was driven by physical well-being, together with a denial of HIV and a lack of understanding of the insidious nature of HIV progression in the absence of signs and symptoms. Life circumstances or competing life priorities were another force which drove disengagement from the health services. Health system factors which contributed to disengagement or delayed re-engagement included the inflexibility of HIV services, together with the unhelpfulness and rudeness of clinic staff. Conclusions Current practices fail to address the challenges to lifelong ART. A bold strategy to involve people living with advanced HIV as active members of the health care team (i.e. ‘PLHIV as Partners’), could contribute to ensuring health care decisions are compatible with their lives and reduce periods of disengagement from HIV services.