‘You're HIV Positive’: Perinatally infected young people's accounts of the critical moment of finding out their diagnosis

Abstract

This paper presents the recollections of 28 young people (15–24 years old) of formally learning that they had acquired HIV perinatally. Prior to the naming of their illness, many participants had experienced repeated biographical disruption through ill health and other major life events. However, the critical moment in their HIV trajectory was when they were told their diagnosis. How information about their diagnosis was managed previously, often disguised, combined with the ways in which the disclosure process was handled communicated to young people the inherent dangers and stigma associated with revealing their HIV status to others. The formal disclosure occasion also signalled to most participants the route of their HIV infection as well as previously hidden health information about family members. Although some young people discovered their diagnosis in an unplanned way, most described the disclosure of their HIV status as a structured event, usually a formal telling with those in authority naming the condition. This even applied to those for whom the discovery that they were HIV positive was a process that happened over time. This paper describes their memories of the disclosure event which for half took place over the age of 12. They received messages conveying the imperative to keep this information a secret to avoid being stigmatised and to protect themselves and their families. They described subsequent feelings of isolation and distress. Policy-makers and clinicians need to consider the WHO disclosure recommendations whilst taking into account individual circumstances.

Keywords:

• HIV
• young people
• disclosure
• perinatally infected
• critical moments
• biographical disruption