The experiences of children and young people with and without learning disabilities who have a cleft lip and/or palate

Background and aim: Present at birth, a cleft lip and/or palate (CL±P) - affecting 1 in 700 births - requires a number of interventions (e.g. surgical, speech and language therapy) from birth until late adolescence. Increased psychosocial problems are reported in the literature for children and young people (CYP) with additional condition(s) to a CL±P (Feragen & Stock, 2014). However, the presence of a learning disability (LD) in addition to a CL±P remains qualitatively unexplored. How CYP with LDs and CL±P experience their different appearance, treatment, and their friendships, is unknown, making it difficult to ascertain their need for further support/interventions. This study therefore explored their experiences.

Method: The triangulation of data sources resulted in 39 semi-structured interviews with 15 CYP with clefts (aged 10-16) with and without LDs, 15 parent interviews and nine interviews with Healthcare Professionals. Thematic Analysis was used to determine patterns across the data.

Results: Nine superordinate themes were identified, and overlapped between participant groups; self-image, struggles, resilience, double vulnerability (of having LDs and a cleft), tensions, good practice, and promotion of rights. Struggles were particularly apparent for CYP with LDs/learning needs, and their parents. Resilience was most strongly asserted by CYP without LDs and their parents. However, key mediating factors affected experiences of appearance, treatment and friendships, namely how familial needs were met in hospital and school. Results led to an interpretative framework, and conceptual flow-diagram of the findings.

Conclusion: Individualised care and support in hospitals and schools is pivotal to ensure inclusion, and improve the experiences of CYP with LDs and CL±P.