Causal explanations, concern and optimism regarding self-injurious behaviour displayed by individuals with Cornelia de Lange syndrome: the parents' perspective

Research into behaviours associated with specific syndromes, such as Cornel ia de Lange syndrome (CdLS), has neglected to explore the parents' perspect ive, particularly the potential impact of the notion of behavioural phenoty pes on parents' causal, explanations. Given the research focus on self-inju rious behaviour (SIB) in CdLS, the present study examined parental concern across four topographies of challenging behaviour, causal explanations for these behaviours and optimism for change. As part of a larger study, a ques tionnaire survey of 86 parents of children and adults with CdLS was conduct ed. Quantitative data on parental concern and optimism with regard to behav iour problems were collected. Causal explanations for behaviour problems we re examined by subjecting open-ended responses to a content analysis. Paren ts were as concerned about physical aggression and disruptive behaviours as they were about SIB. The majority of parents had deconstructed how CdLS mi ght be associated with SIB in terms of. other factors associated with CdLS, such as degree of intellectual disability. Parents did not believe that Cd LS influenced SIB more than other challenging behaviours and their beliefs did not effect optimism regarding future change in the behaviour. Despite t he focus of research on SIB in CdLS, parents of children and adults with Cd LS are also concerned about other challenging behaviours. There was no evid ence that a deterministic perspective had been adopted by parents and causa l explanations were unrelated to optimism for future change.