“I knew I had something bad because no-one spoke about it” – disclosure discovery: Experiences of young people with perinatally acquired HIV in the UK

Abstract

In the United Kingdom, most young people born with HIV now reach adulthood. Although the clinical trajectory of HIV in this unique group is now more predictable, young peoples’ perspectives of growing up with HIV are less known.

This qualitative study explored the experiences of young people growing up with HIV and considered issues including relationships, strategies for managing and living with HIV and perspectives on their futures. A total of 28 young people (15–24 years old) with perinatally acquired HIV were recruited from a specialist adolescent clinic. In depth interviews with participants were recorded, transcribed verbatim and analysed using a grounded theory approach and assisted by Nvivo software.

Participants consistently identified the disclosure process of their HIV status as a crucial marker in their illness trajectory, defining their long-term adjustment to their illness. Some participants discovered their HIV status by accident; of the others who were informed directly, a third knew they suffered from a serious condition and several reported knowing or guessing their HIV status before they were formally told.

Participants reveal that despite worrying about their health, they do not initiate discussion with adults. They perceive that partly due to their personal experiences, family members also refrain from discussing HIV with them. This silence results in young people being isolated whilst waiting for permission to talk. When they are told, they are warned to remain silent as HIV is perceived to be stigmatised.

Adults refraining from communicating about young peoples’ status at an appropriate time may model young peoples’ future disclosure to others. Greater awareness is required of the importance that professionals communicate directly with young people, who in turn may need support to facilitate communication with their families and peers. The perspective of young people is crucial to improve practice, develop services and reduce isolation for those growing up with HIV.

Keywords:

• HIV/AIDS
• perinatally infected
• disclosure
• secrecy
• adolescents
• young people
• children

Acknowledgements

This study was supported by The Open University and the authors wish to thank Professor Shirley Reveley and Dr Sarah Earle for their contribution as co-supervisors.