“It's On Your Shoulders Now” Transitioning from Child-to-Adult UK Cleft Lip/Palate Services: An Exploration of Young Adults’ Narratives

Abstract

Objectives: Treatment for cleft lip and/or palate (CL/P) in the United Kingdom is administered on a standardised pathway from diagnosis to early adulthood, with options to be re-referred in later life. At age 16, patients become responsible for their treatment decisions. Evidence from the wider health literature indicates this transition can be challenging and that this population may require additional support. The present study explored young people's experiences of transition to adult care in the context of CL/P services, with the aim of identifying support needs and informing future service delivery. Design: Individual semi-structured interviews were conducted with 15 individuals with CL/P (aged 17–25 years) to explore transition experiences. Interviews lasted an average of 69 min and data were analysed using reflexive thematic analysis. Results: Four themes, with subthemes, were identified: 1) Readiness for Transition covered feelings of preparedness and how health professionals approached transition; 2) Making Decisions as an Adult described concerns and considerations when making treatment decisions; 3) Finding and Using Support, reflected the roles of caregivers and peers in developing self-advocacy; and 4) Reflections on Transition Care offered insight into how care could be improved. Conclusion: Individuals born with CL/P may experience challenges in becoming responsible for their own care and treatment decisions. The findings of this study indicate that a dedicated transition protocol may be beneficial, such that adolescents are prepared to confidently access and manage their care into adulthood. Opportunities for improvements in transition planning and provision are discussed.