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.