“I was scared dating… who would take me with my status?”- Living with HIV in the UTT era in Johannesburg, South Africa

Abstract

ABSTRACTBACKGROUNDSouth Africa rolled out Universal Test-and-Treat (UTT) in 2016, extending treatment eligibility to all persons living with HIV (PLHIV). Through this study, we sought to understand the experience of people living with HIV in the UTT era in South Africa.METHODSIn May 2021, we conducted in-depth interviews (IDI) (N = 27) with adult (≥ 18 years) PLHIV referred by HIV counsellors at three peri-urban primary healthcare clinics. We also conducted three focus group discussions (FGDs) (N = 27) with adult PLHIV recruited from clinics or from civil society organisations through snowball sampling. Follow-up interviews were conducted with 29 IDI and FGD participants, to gain a deeper understanding of their journey living with HIV. Participants were asked to reflect on their HIV diagnosis, what their HIV status meant to them in light of the UTT era and how, if at all, being HIV-positive affected their lives. Interviews and focus group discussions were audio-recorded, transcribed, translated to English, and analysed thematically.RESULTSThe study included 4 men and 23 women recruited from clinics and 12 men and 16 women recruited from civil society (total N= 54). Participants reported that PLHIV could live a long life with antiretroviral therapy (ART) and that ART was widely accessible. However, they reported that HIV elicited feelings of guilt and shame as a sexually transmitted disease. Participants used the language of “blame” in discussing HIV transmission, citing their own reckless behaviour or blaming their partner for infecting them. Participants feared transmitting HIV to others and felt a responsibility to avoid transmission. To manage transmission anxieties, participants avoided sexual relationships, chose HIV-positive partners, and/or insisted on using condoms. Many participants feared – or had previously experienced – rejection by their partners due to their HIV status and reported hiding their medication, avoiding disclosure to their partners, or avoiding relationships altogether. Most participants also reported having low to no knowledge about treatment-as-prevention (TasP). Participants who were aware of TasP expressed less anxiety about transmitting HIV to others and greater confidence in having relationships.CONCLUSIONDespite the normalization of HIV as a chronic disease, PLHIV still experience transmission anxiety and fears of rejection by their partners. Disseminating information on treatment-as-prevention could reduce the psychosocial burdens of living with HIV, encourage open communication with partners, and remove barriers to HIV testing and treatment adherence.