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Causal explanations, concern and optimism regarding self-injurious behaviour displayed by individuals with Cornelia
Insights
Parents of children with Cornelia de Lange syndrome (CdLS) are concerned about various challenging behaviors, not just self-injurious behavior (SIB). Their beliefs about the causes of these behaviors do not affect their optimism for future improvements.
Area of Science:
- Developmental Psychology
- Genetics
- Behavioral Science
Background:
- Research on Cornelia de Lange syndrome (CdLS) often overlooks parental perspectives on behavioral phenotypes.
- The focus on self-injurious behavior (SIB) in CdLS research may not fully represent parental concerns.
Purpose of the Study:
- To investigate parental concern regarding various challenging behaviors in CdLS.
- To explore parents' causal explanations for these behaviors.
- To assess the relationship between causal beliefs and optimism for behavioral change.
Main Methods:
- A questionnaire survey of 86 parents of individuals with CdLS.
- Quantitative data collection on parental concern and optimism.
- Content analysis of open-ended responses for causal explanations.
Main Results:
- Parents expressed equal concern for SIB, physical aggression, and disruptive behaviors.
- Most parents attributed challenging behaviors to factors associated with CdLS, like intellectual disability, rather than CdLS itself.
- Parental causal explanations were not linked to their optimism for future behavioral change.
Conclusions:
- Parental concerns in CdLS extend beyond SIB to encompass a range of challenging behaviors.
- Parents do not adopt a deterministic view of CdLS influencing behavior, and their beliefs do not diminish optimism for improvement.
Abstract:
Research into behaviours associated with specific syndromes, such as Cornelia de Lange syndrome (CdLS), has neglected to explore the parents' perspective, particularly the potential impact of the notion of behavioural phenotypes on parents' causal explanations. Given the research focus on self-injurious 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 questionnaire survey of 86 parents of children and adults with CdLS was conducted. Quantitative data on parental concern and optimism with regard to behaviour problems were collected. Causal explanations for behaviour problems were examined by subjecting open-ended responses to a content analysis. Parents were as concerned about physical aggression and disruptive behaviours as they were about SIB. The majority of parents had deconstructed how CdLS might be associated with SIB in terms of other factors associated with CdLS, such as degree of intellectual disability. Parents did not believe that CdLS influenced SIB more than other challenging behaviours and their beliefs did not effect optimism regarding future change in the behaviour. Despite the focus of research on SIB in CdLS, parents of children and adults with CdLS are also concerned about other challenging behaviours. There was no evidence that a deterministic perspective had been adopted by parents and causal explanations were unrelated to optimism for future change.