“If your CD4 count lowers, that is when you are similar to a person that is non-existent”: a qualitative exploration of perceptions around advanced HIV disease in South Africa

Despite widespread availability and differentiated delivery of antiretroviral treatment (ART), advanced HIV disease (AHD) remains prevalent, with high mortality risk. In South Africa, we assessed perceptions about the meaning of AHD and social and behavioural factors influencing AHD development. In-depth interviews were conducted with 13 PWH screened for AHD during a community-based tuberculosis triage trial, and five stakeholders involved in policy-making or implementation of AHD-related programmes. Two focus group discussions were conducted with seven study nurses and two with seven public sector nurses. Thematic analysis and data triangulation were performed. We found that PWH did not commonly know the term AHD and confused CD4 count with viral load testing. Perceptions about AHD among PWH ranged from AHD being a death sentence, causing opportunistic infections, to AHD diagnosis presenting a survival opportunity. Adherence problems and clinic avoidance were behavioural factors directly leading to AHD, with ART fatigue being emphasized by and in aging PWHs. The main themes which arose when discussing factors influencing AHD development, which were confirmed by different stakeholders, were (i) missed opportunities to (re)-engage in care due to clinic barriers, (ii) emotional stress and impaired mental health, (iii) alternative beliefs about medicines and health, and (iv) stigma, denial, and non-disclose. The term “AHD” was commonly unknown among PWH, while opportunistic infections were known. Structural barriers to care, mental health challenges, reliance on traditional medicine, and stigma, contributed to disengagement from care and progression to AHD in our population. These findings highlight the need to raise awareness about AHD among PWH and to create demand for CD4 testing, to implement effective welcome back strategies for those disengaging from care, integration of mental health screening for PWHs, and revamping community education to reduce stigma and improve ART and AHD-related literacy.