Antiretroviral pause for HIV remission trials: A mixed methods study of people living with HIV in Soweto, South Africa

Trials may pause antiretroviral treatment to study HIV remission, but little is known about the perspectives of people living with HIV in highly prevalent regions. This mixed methods study qualitatively explored perspectives and quantitatively measured research participation willingness. Using snowball sampling, we included consenting adults with HIV in Soweto, South Africa. Of 100 people who completed questionnaires of demographics and participation willingness, 49 without analytic treatment interruption experience participated in 1 of 5 stratified focus groups, and 1 with analytic treatment interruption experience participated in an individual interview. We conducted the study at a research facility during 2024. The analyst performed manual inductive coding on transcripts from audio-recordings and analyzed thematically. We summarized quantitative data using descriptive statistics, compared groups using the Kruskal-Wallis test and assessed factors associated with willingness using univariate and multivariate logistic regression. Of 100 participants (44% female, median age 39 years) surveyed, 96% were willing to participate in HIV cure research, varying by study procedure: 75% if antiretrovirals paused, 97% if blood collected, 57% if lymph nodes, 41% if gut, and 39% if cerebrospinal fluid sampled. Willingness to pause antiretrovirals was similar for people aged 40+ versus 18-39 years (p = 0.248), antiretroviral duration 1-8 versus 9 + years (p = 0.759) and females versus males (p = 0.740). Prior cure research participation increased willingness to pause antiretrovirals (RR: 1.36, 95% CI: 1.17-1.58). The focus groups (n = 49) and interview (n = 1) revealed themes about pausing HIV treatment: physical and emotional health considerations, social considerations including non-adherence stigma and selective conditional disclosure, lifestyle optimization and healthcare interactions. Recommendations for researchers conducting analytic treatment interruption trials in South Africa include: counselling about monitoring, lifestyle health and treatment re-initiation; offering disclosure support; communicating directly with antiretroviral clinics about treatment pauses; and minimising mandatory invasive procedures. Negative healthcare experiences suggest treatment programmes should address staff burnout.