The act of telling: South African women’s narratives of HIV status disclosure to intimate partners in the HPTN 071 (PopART) HIV prevention trial

BACKGROUND: Public health programming often frames HIV status disclosure as a means to negotiate condom- and abstinence-based prevention or to involve intimate partners in HIV care to garner treatment adherence support. HIV treatment can be used to ensure viral suppression and prevent onward transmission, which provides strong evidence to encourage disclosure. The ideological shift towards HIV treatment as prevention is expected to facilitate disclosure. PURPOSE: There is a lack of research on how the scale-up of universal HIV testing and treatment influences disclosure practices in high burden settings. In this manuscript, we aim to address this gap. METHODS: To this end, we conducted a two-phased narrative performative analysis of the disclosure scripts of 15 women living with HIV in three communities of Western Cape, South Africa where the HPTN 071 (PopART) HIV prevention trial implemented a universal HIV testing and treatment model as part of the intervention. The women were part of a larger cohort nested in the trial. We use Goffman’s dramaturgical metaphor, which understands social interactions as ‘performances’ by ‘actors’ (people) guided by ‘scripts’ (anticipated dialogues/interactions), to explore how women living with HIV manage their status disclosure. CONCLUSION: We describe how these women perform HIV status disclosure (or deliberate non-disclosure) to retain, reaffirm or redefine existing social scripts with partners. Their performances reveal priorities other than those imagined by public health programmes driving HIV disclosure (or non-disclosure): establishing trust, resenting betrayal and ensuring self-preservation while simultaneously (re)constructing self-identity. None of the women engaged with the concept of treatment as prevention in their disclosure narratives, either to facilitate disclosure or to ‘justify’ non-disclosure. HIV prevention, in general, and treatment adherence support were rarely mentioned as a reason for disclosure. To date, there has been a missed opportunity to ease and support disclosure in health programmes by tapping into existing social scripts, impeding potential patient and public health benefits of universal HIV testing and treatment.