Abstract

Despite receiving treatment by specialist services in childhood and adolescence some individuals report ongoing cleft-related issues that impact on their self-confidence and quality of life due to both aesthetic and functional reasons. This study used in-depth qualitative interviews to explore 1) Experiences of specialist treatment during childhood and adolescence for individuals born with CLP and 2) Re-Engagement with specialist cleft services as an adult in the U.K. Thematic analysis of the interview data led to the emergence of four key themes: 'Living with a cleft as an adult', 'Re-engagement with treatment', 'Expectations of treatment and communication', and 'Health professionals' awareness of cleft'. It was apparent that many individuals were dissatisfied with specialist treatment in childhood or had not felt involved in making decisions about treatment. It was also clear that non-specialist professionals may lack awareness of the issues individuals born with CLP face in relation to living with CLP and re-engagement with specialist cleft services in the U.K. The implications of the findings are discussed in relation to future research and training both specialist and non-specialist health professionals such as GMPs and GDPs.

Authors and Affiliations