Exploring the Needs of Young People Born With Cleft Lip and/or Palate Approaching End of Routine Care, in the UK.

Objective: The aim of this study was to understand the needs of young people, aged 16 to 20 years, born with cleft lip and/or palate (CL/P) approaching end of routine care, in the United Kingdom (UK).

Design: Nominal group technique was used during 2 online focus groups to identify priorities for cleft care at transition to adult care. Focus group discussions were recorded, transcribed, and analyzed using reflexive thematic analysis.

Participants: Ten young people born with CL/P, 8 aged 18 to 20 years and 2 aged 16 to 17 years were recruited via the UK-based cleft charity, the Cleft Lip and Palate Association (CLAPA).

Results: Three themes were identified from the analysis: Theme 1-Psychological well-being is not a constant. Theme 2-Asking and listening-the cleft clinic appointment. Theme 3-Approaching end of routine care and re-accessing cleft services.

Conclusions: Findings suggest that young people have ongoing needs in older adolescence. Psychological well-being, taking control of their own treatment and re-accessing the cleft team were highlighted as particular issues. Whilst further research with a larger and more representative sample is needed, these results support the need for continued access to and provision from the cleft team at this age.