I wish I could tell you but I can’t: Adolescents with perinatally acquired HIV and their dilemmas around self-disclosure

Abstract

Many young people growing up with HIV are choosing not to disclose their status to others, yet are likely to face difficult decisions and conversations such as explaining school absence, taking medication, coping with physical changes and for many, parental bereavement. This study aims to describe and explore the attitudes and opinions of adolescents with perinatally acquired HIV towards disclosure. Semi-structured interviews were conducted with nine young people aged 13–19 and analysed using Interpretative Phenomenological Analysis. Four themes emerged to illuminate the young people’s attitudes towards disclosure. These were 1) myths and assumptions, 2) the disclosure dilemma, 3) fear and 4) keeping HIV in its place. This study confirms that many young people with HIV are choosing not to disclose. However, it appears that it is a complex decision-making process that changes over time and is influenced by developmental factors and societal attitudes towards HIV. Recommendations are suggested for services to better support adolescents growing up with HIV.