Influences on decision-making about disclosure of HIV status by adolescents and young adults living with HIV in KwaZulu-Natal, South Africa

Background: Adolescents and young adults living with HIV (AYA) are faced with the challenge of living with a life-long chronic condition. We investigated the influences on the decisions by AYA to disclose their HIV status to family, intimate partners and friends.Methods: Twenty AYA aged between 15 and 24 years were purposely selected through local community-based organisations in eThekwini municipality and uMkhanyakude district in KwaZulu-Natal Province, South Africa. Virtual in-depth interviews were conducted between September 2020 to October 2021 using a topic guide focusing on HIV-status disclosure and the impact of stigma on decision-making capacity. An iterative thematic process was used for analysis.Results: Findings revealed the challenges that AYA experience for disclosure because of stigma and how this impacts their decision-making capacity. Family and friends influenced AYA in processing their discovery of their HIV status offering support needed to manage living with HIV. However, for some AYA disclosing to relatives, friends and intimate partners was difficult because of fears of rejection and recrimination. The act of disclosure was influenced by both internalised and external stigma and the type of relationships and interactions that AYA had with relatives, friends and caregivers.Conclusions: The decision to disclose is challenging for AYA because of the fear of rejection, along with internal and external stigma. The provision of support, whether from family or peers, is important. Enhancing the decision-making capacity of AYA is essential for developing their self-esteem as well as supporting future healthcare choices.