Stigma, disclosure and support experienced by women enrolled in an HIV cure-related trial with an analytical treatment interruption in Durban, South Africa
Analytical treatment interruption (ATI) is a closely monitored pause of antiretroviral-therapy (ART) in HIV cure-related research used to assess whether people can maintain viral suppression off ART. We examined HIV-related stigma, disclosure, and support among young women in an ATI-inclusive trial in Durban, South Africa. Nineteen women (age range: 23-32) completed stigma surveys and in-depth-interviews at screening, pre-ATI, post-ATI, and trial-end. We grouped participants by time to restart ART: early (under 16 weeks); delayed (16-44 weeks), and long-term delayed (45-60 weeks). Stigma scores ranged from 1-5, with higher scores indicating greater stigma. Median stigma scores declined from 3.00 at screening to 2.63 at trial end. Scores declined in the early and delayed groups, while the long-term delayed group showed a temporary decline and then returned to baseline. Participants reduced social risk by disclosing HIV status and trial participation only to trusted people. Enacted stigma was uncommon and mainly involved negative reactions to pausing ART. Internalized stigma remained low, although early viral rebound triggered guilt for some. Trial staff and selected family members provided consistent support, while partner support varied. Findings highlight the need for participant-centered communication, disclosure planning, and monitoring and support in ATI trials.
Authors
- Vanessa Pillay
- Karine Dubé (ORCID: https://orcid.org/0000-0003-3458-1539)
- Maud Mthembu (ORCID: https://orcid.org/0000-0002-1606-2041)
- Thumbi Ndung’u (ORCID: https://orcid.org/0000-0003-2962-3992)
- Deborah L. Mindry (ORCID: https://orcid.org/0000-0003-0761-5895)
- Jamila K. Stockman (ORCID: https://orcid.org/0000-0003-1909-6965)
- Miranda Hill (ORCID: https://orcid.org/0000-0002-9501-7846)
- Krista L. Dong (ORCID: https://orcid.org/0000-0002-2038-3518)
- Fangping Wan (ORCID: https://orcid.org/0000-0003-1647-3278)
- Maryam Hussain (ORCID: https://orcid.org/0000-0001-5547-9889)
- Whitney Tran
- Ntombifuthi Langa
- Ayanda Zulu
- Mzwakhe Wiseman Ngcobo
- Ali Ahmed
Institutions
- Harvard University (US)
- University of California, San Francisco (US)
- Ragon Institute of MGH, MIT and Harvard (US)
- University of California San Diego (US)
- Massachusetts General Hospital (US)
- Africa Health Research Institute (ZA)
- University of California Global Health Institute (US)
- University College London (GB)
- Mass General Brigham (US)
- Massachusetts Institute of Technology (US)
- University of KwaZulu-Natal (ZA)
Publication Details
- Journal
- AIDS Care
- Published
- 2026-11-02
- DOI
- https://doi.org/10.1080/09540121.2026.2750049
- Primary Topic
- HIV/AIDS Research and Interventions
- Type
- article
- Field-Weighted Citation Impact
- 0.00