Specialist hospital treatment and care as reported by children with intellectual disabilities and a cleft lip and/or palate, their parents and healthcare professionals.

BACKGROUND

Research into hospital treatment and care of children with intellectual disabilities is extremely limited, but available literature points to difficulties. Some children have a co-occurring condition alongside an intellectual disability which requires ongoing treatment, such as a cleft lip/palate. To date, their experiences remain untapped.

METHOD: Semi-structured interviews with 23 participants; five children with intellectual disabilities (aged 11-16), their parents (n = 9) and nine healthcare professionals working in cleft care. Thematic analysis determined patterns across the data.

RESULTS

Three key themes were found: struggles (stress and distress, and power imbalance), tensions (perceived levels of choice and control in decision making, lack of training around intellectual disability assumptions and jargon) and good practice (appropriate communication and information, and tailored treatment).

CONCLUSION

Good practice was evident, but was ad hoc. Individualized treatment and communication based upon children's needs are required as is further investigation into general anaesthetic induction for children with intellectual disabilities.