Disclosure and Experiences of HIV-Related Stigma among Adolescents and Young Adults Living with HIV in South Africa

Abstract

Social networks expand rapidly in adolescence, increasing HIV status disclosure considerations and concerns for young people living with HIV, especially in settings where HIV-related stigma is prevalent. This study examines HIV disclosure and enacted stigma among adolescents and young adults living with HIV in South Africa. This study uses survey data from a sample of 1186 youth living with HIV, aged 14–24, and enrolled in peer support groups led by community-based organizations in KwaZulu Natal and Gauteng provinces, South Africa. Study participants completed a questionnaire on sociodemographic details, physical health, school attendance, who knew the individual’s HIV status, and experiences of HIV-related mistreatment. Mixed effects logistic regression examined the association between experiences of HIV-related mistreatment and factors that may inadvertently disclose one’s status, such as poor physical health and missed school, and knowledge of an individual’s HIV-positive status by their caregiver, household, friends, educators, and most recent sexual partner. Almost a quarter of the sample reported an experience of HIV-related mistreatment in the past six months. After controlling sociodemographic characteristics, missed school due to illness (AOR = 1.75, 95% CI = 1.27–2.43), and knowledge of HIV status by non-family members (AOR = 2.19, 95% CI = 1.60-3.00) were significantly associated with HIV-related mistreatment. Findings suggest that experiences of enacted stigma are common among youth and linked to poor physical health and knowledge of HIV status outside the family. Effective community-level stigma reduction interventions are urgently needed. In the meantime, adolescents need individualized disclosure counseling and support managing their physical health to prevent further inadvertent disclosure and discrimination.