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

Abstract

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.

Predictors and Timing to Viral Suppression in HIV-Infected Pregnant Women in the University of Zimbabwe Birth Cohort Study During the Era of Lifelong Antiretroviral Therapy (Option B+ Treatment Strategy)

“…Deliberate non-disclosure of HIV status may be a function of personal interests or priorities to avoid loss of trust and ensure self-preservation while simultaneously (re)constructing self-identity and reaffirm or redefine existing social interactions with the spouse/intimate partner (56). This probably may also have been the case in our study where 1.8% of women had an undisclosed HIV status, up to 7,259 days after being diagnosed of HIV.…”

The HIV Empowering Adults’ Decisions to Share: UK/Uganda (HEADS-UP) Study—A Randomised Feasibility Trial of an HIV Disclosure Intervention for Young Adults with Perinatally Acquired HIV

“…There are fewer reports in the literature relating to facilitators of HIV status sharing. Viljoen et al [ 36 ] reported that trust and intimacy can motivate sharing. HIV status sharing in young people with PAH has been associated with higher levels of HIV disclosure self-efficacy, being older, paternal orphanhood, contributing to family income, regular visits to the HIV clinic, and greater social support through peers [ 16 ].…”

“This is an illness. No one is supposed to be treated badly”: Community-based stigma assessments in South Africa to inform TB stigma intervention design

“…Adapting strategies used to address HIV stigma, including the prioritization of rights-based approaches and empowerment, can help to change narratives surrounding TB. This includes eliminating criminalizing and discriminatory terms such as suspect or defaulter that drive stigma ( 14 ), and considering personal rather than only public health motivation to facilitate disclosure conversations ( 39 ). Given stigma’s impact on TB care outcomes as well as longer-term impacts on people’s well-being, we recommend that TB-related stigma should be evaluated and measured as a primary indicator of quality-of-life rather than merely as a programmatic or medicalized indicator of the TB cascade ( 8 ).…”