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.

Social Categorisation and Social Identification: The Mediating Role of Social Isolation and Loneliness in Adolescents Living with HIV.

BACKGROUND: Social isolation and loneliness are associated with living with a chronic condition particularly where stigma is a factor. Our study aimed to examine the lived experience of adolescents living with HIV in relation to isolation because of their diagnosis and consequences of disclosure. Giddens' structuration theory was used as an analytic framework to identify the potential mechanisms underlying adolescents living with HIV's experiences. METHOD: Longitudinal in-depth interviews were conducted with 20 adolescents living with HIV aged 15-24 years with each participant taking part in three interviews (total 60) between September 2020 and October 2021. Thematic analysis was performed using Braun and Clarke's steps for coding and analysing qualitative data and informed by the structuration theory framework. RESULTS: The findings indicated that adolescents living with HIV have agency and make conscious choices about sharing their status. However, these choices are influenced by their experiences in their community. The discrimination and negative judgements they often experience prevent them from disclosing their status. Stigma, discrimination, and psychological distress contribute to the isolation that adolescents and young adults living with HIV experience. The limited disclosure itself can lead to them becoming isolated and lonely. CONCLUSION: The negative experiences which adolescents living with HIV face can have an impact not only on their psychological wellbeing but also on their decision to disclose and seek support. These experiences may lead to social isolation and loneliness, an unintended consequence of their action in protecting themselves from the conditions created by the structures/environment in which they live.