Parental Illness Representation of Intellectual Disability and Parental Emotional Distress and Coping

Abstract

While there have been studies exploring the relationships between parental representations of their child’s illness, parental emotional distress and coping, there is lack of research on parents of children with intellectual disability (ID). The present study explores relationships between parental illness representations of their child’s ID, parental emotional distress and coping. Ninety-one parents of children with ID completed measures of the Illness Perception Questionnaire-Revised (IPQ-R), the Brief COPE scale and the Depression, Anxiety and Stress Scale (DASS-21). Correlation, regression and mediation analyses were conducted for all variables. Emotional distress correlated negatively with ‘identity’ (r = − .23) and positively with self-blame and substance abuse (r = .51), ‘consequences’ (r = .34), perception of child’s symptoms as ‘cyclical’ appearing and disappearing (r = .29) and maladaptive coping such as behavioural disengagement (r = .27). Negative illness representations such as consequences and perception of symptoms as ‘cyclical’ uniquely predicted about 9% of parental emotional distress after accounting for self-blame and substance abuse and behavioural disengagement together explaining nearly 30% of the outcome. Lastly, self-blame and substance abuse mediated the relationship between ‘illness coherence’ and ‘emotional distress’ as well as the relationship between ‘consequences’ and ‘emotional distress’. The study has identified that certain parental coping methods and illness representations that parents have of their child’s ID are associated with parental emotional distress.