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

Abstract

BACKGROUND South 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. METHODS In May 2021, we conducted in-depth interviews (IDI) (N = 27) with adult (18 years and older) 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. RESULTS The 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. CONCLUSION Despite 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.

Designing effective U = U communication strategies considering the needs of PLHIV, their partners, and healthcare worker constraints in South African clinics

“…Similar to previous studies, we found that PLHIV understand the health benefits of ART, with significant gaps in knowledge and only moderate confidence in U = U [ 10 , 18 , 19 ]. The scepticism was rooted in PLHIV’s limited VL literacy and challenges in understanding the implications of U = U for their relationships [ 20 , 21 ]. While the U = U approach to VL communication can facilitate HCPs’ partnerships with patients to improve their self-management, the potential benefits of U = U on ART adherence and the mental and emotional well-being of PLHIV are likely mediated by U = U belief among current and prospective partners [ 21 , 22 ].…”

“…The scepticism was rooted in PLHIV’s limited VL literacy and challenges in understanding the implications of U = U for their relationships [ 20 , 21 ]. While the U = U approach to VL communication can facilitate HCPs’ partnerships with patients to improve their self-management, the potential benefits of U = U on ART adherence and the mental and emotional well-being of PLHIV are likely mediated by U = U belief among current and prospective partners [ 21 , 22 ]. However, HIV-negative/naïve persons in South Africa are largely unaware or sceptical of U = U [ 18 ].…”

“…A recent study reported that HIV-negative partners were unwilling to stop PrEP or condom use even after their partners achieved viral suppression [ 23 ]. The potential benefits of U = U on ART adherence behaviours and PLHIV wellbeing are likely mediated by U = U knowledge among current and prospective partners [ 21 ]. Indeed, this was confirmed in a randomized trial in Malawi: disseminating information on TasP at the community level increased HIV testing by increasing people’s beliefs about other community members’ TasP knowledge and reducing anticipated stigma.…”