The UK has an ageing cohort of children living with HIV, and their transition from childhood to adulthood is a current issue for services. This report from the Children and Young People HIV Network explores the experiences of young people living with HIV as they take steps towards greater independence and access services differently, as well as the perspectives of practitioners, parents and carers guiding young people through this process. It provides an overview of current transition practice in children’s and adult health, social care and voluntary sector services in England.
An initial literature review examined current thinking on transition for young people with HIV and other long-term conditions. The Network then conducted focus groups with 123 practitioners; group consultations and one-to-one interviews with HIV positive young people aged 13–28; and a small-scale consultation event with four parents and carers.
Key findings include:
- There is great diversity of experience amongst young people, parents/carers, and practitioners severally; health, social care and voluntary sector services each play important roles in transitiom
- Young people want to be treated as ‘normal’, recognised as whole people with the same interests and concerns as their peers, and need support that enables them to lead ordinary lives in which HIV is not a focal point • Stigma underpins or complicates many of the challenges identified for young people in making a smooth transition into adulthood
- Some complex physical, mental, emotional and/or social challenges and needs influence the transition experiences of many young people
- Transition is a critical time for adherence to HIV treatment and engagement with healthcare
- Some young people, including young adults, experience barriers to accessing age-appropriate support that meets their needs; the practitioners consulted expressed a strong commitment to supporting this age group but faced difficulties, often relating to resources and technical capacity.