Intellectual disability and cleft lip/ palate: young people’s appearance self perceptions and psychosocial experiences.

Aim: Ascertain and compare the self perceived appearance and psychosocial experiences of young people with and without intellectual disabilities who have clefts.

Almost half of people who have a cleft lip also have an intellectual or language disability (Ceponiene et al. 2000). However, people with these coexisting impairments have been neglected in research. Consequently, we lack an understanding of people’s experiences.

How people with intellectual disabilities feel about their appearance and social experiences is unknown, making it difficult to identify what additional support may be appropriate. Weiner (2004) suggested that for people with intellectual disabilities, behavioural problems are more likely to occur if more than one ‘risk factor’ is present. Does the combination of a cleft and an intellectual disability result in a case of double jeopardy, or are people affected coping well?

Additionally, Harter (1999) described the well documented association between satisfaction with appearance and self-worth, and as self perceptions are amenable to change, the importance of gaining perspectives of those who have historically been excluded from data collection in appearance research cannot be underestimated.

Method: Qualitative study capturing young people’s experiences.

Results and conclusions: The work is still in progress, details of emerging results will be presented.