HIV-related stigma, disclosure and social support: experiences among young pregnant and postpartum women living with HIV in South Africa

ABSTRACT

Young pregnant and postpartum women living with HIV (WLHIV) are at high risk of poor antiretroviral therapy (ART) outcomes, which may be driven partly by HIV-related stigma. We conducted in-depth interviews with 20 pregnant and postpartum WLHIV aged 19–24 years to understand how different forms of HIV-related stigma manifest in their lives, as well as their experiences of HIV-status disclosure and social support. Participants described profound levels of perceived stigma in their community, including gossip from other young women and judgement from older adults. Consequently, participants disclosed to a limited number of people to avoid being stigmatised, and disclosure to peers was especially uncommon. However, disclosure in certain situations was described as leading to emotional support and support for ART adherence, and disclosure to older WLHIV resulted in participants having a role model. Finally, participants expressed varied ways in which they accept, speak about, and live with their HIV diagnosis. These data provide a rich understanding of the experiences of HIV-related stigma in this population and point to the need for psychosocial interventions focussed on acceptance and coping with an HIV-positive diagnosis despite profound levels of perceived stigma, as well as navigating decisions around the targets and timing of disclosure.

Trial registration: ClinicalTrials.gov identifier: NCT04036851.

KEYWORDS:

• HIV-related stigma
• disclosure
• social support
• pregnancy
• young women
• South Africa

Acknowledgements

The authors would like to thank the women who participated in this study, as well as the study staff for their support of this research. This research was supported by the Fogarty International Center, National Institute of Mental Health of the National Institutes of Health under Award Number R21TW011047. Drs. Mellins and Remien are supported by a grant from the National Institute of Mental Health (NIMH) to the HIV Center for Clinical and Behavioral Studies (P30-MH45320). Dr. Pellowski was supported by a career development grant from the National Institute of Mental Health (NIMH K01MH112443).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Fogarty International Center (FIC), National Institute of Mental Health (NIMH) of the National Institutes of Health [Grant Number R21TW011047].