Transition to Adulthood and Adult Care: Lived Experiences of Young Adults with Perinatal HIV in the Netherlands

The transition from adolescence to adulthood is a critical phase for young people living with perinatal HIV, who must navigate typical developmental milestones while managing a chronic illness and facing (fear of) societal stigma. This qualitative study explored the lived experiences of Dutch young adults (aged 20-30) with perinatal HIV, focusing on their transition to adulthood and from pediatric to adult care. Semi-structured interviews were conducted with 11 participants. While the findings are based on a small, self-selected sample and are not intended to be statistically representative, they offer in-depth insight into key challenges during transition. The findings highlight the profound impact of stigma and selective disclosure of HIV-status. Parental support was important but complex, especially when views on disclosure differed. Peer contact could provide a sense of connection, though many did not feel the need for ongoing involvement. Participants described challenges in social and professional contexts. Experiences with the transition to adult care varied, with more recent transfers being more positive. Valued key elements of transitional care included support from nurse specialists, meeting the adult provider beforehand, and a warm welcome in adult care. Despite stable medical management, the psychological burden of stigma and fear of disclosure remained significant. These findings underscore the need for tailored transition programs addressing medical, psychosocial and emotional needs, including psychological support, structured attention to family dynamics, pre-transfer meetings with adult providers, and peer support.