Perceptions and Experiences about Self-Disclosure of HIV Status among Adolescents with Perinatal Acquired HIV in Poor-Resourced Communities in South Africa

Background. There is limited research on the disclosure experiences of adolescents with perinatal acquired HIV (PAH). The study explores how adolescents with PAH experience living with HIV and examined their perceptions and experiences regarding disclosure and onward self-disclosure to friends and sexual partners. Methods. Thematic analysis was used to analyze in-depth interviews conducted with 37 adolescents. Findings. Adolescents received disclosure about their status at mean age of 12 years. They perceived disclosure as necessary and appreciated the truthful communication they received. Adolescents have learned to accept and live with HIV, and they desired to be healthy and normal like other people. After receiving disclosure, they found their treatment meaningful, and they adhered to medication. However, they also expressed a strong message that their HIV status was truly their secret and that self-disclosure to others will take the feeling of being normal away from them because they will be treated differently. Conclusion. Adolescents maintained secrecy in order to be accepted by their peers but also to protect themselves from stigma and isolation. Given that adolescents want to be informed of their HIV status but desire controlling self-disclosure of their HIV status, these should form the basis for development of disclosure interventions.