“If there was no stigma around it, I would tell people”: perspectives of UK youth living with perinatally acquired HIV, their social networks and healthcare professionals on HIV status sharing

Sharing one's HIV status with others is complex for youth with perinatally acquired HIV (PAH). However, the support from sharing one's HIV status may assist with HIV-related challenges. This study explored barriers and facilitators of HIV status sharing among UK-based youth living with PAH. Drawing on semi-structured interviews with ten youth with PAH, ten members of their social networks and five HIV professionals, this study examined the complex relational nature of disclosure. The data were examined using thematic analysis. While many youths expressed a desire to be open, sharing was shaped by stigma, cultural silence, familial secrecy, fear of rejection and lack of HIV education. Facilitators included emotional readiness, peer support, increased knowledge and positive prior experiences of disclosure. Social network participants often saw themselves as supportive, although professionals tended to focus on potential emotional risks. This study underscores disclosure as a process requiring ongoing support and suggests that empowering youth with education, skills and confidence is key. It identifies the need for better professional guidance and disclosure interventions co-designed with youth to support health and well-being. The findings have implications for stigma reduction, education and psychosocial support, contributing to improving the quality of life for youth with PAH.