Illness perception in children with cerebral palsy, a longitudinal cohort study

Background The perception of a disorder could be of importance both in problem solving behaviors, and in the emotional approach towards a disorder. Aims In this paper, we wanted to assess changes in illness perception in children with Cerebral Palsy (CP) over a four-year interval, to compare parental and self-ratings, and to assess illness perceptions according to co-occurring medical and psychiatric disorders. Methods Parents in a cohort of children with CP (N = 36), filled in the Illness Perception Questionnaire at age seven and again at age eleven, and self-reports were gathered at age eleven. Stability across time, informant differences and scores according to motor function, intellectual disability and the prevalence of psychiatric disorders were assessed. Results We found stable parental perceptions across a four –year interval. Parents reported significantly higher impact of CP on the child, than that reported by the child itself. In children with a more severe motor disability and/or co-occurring psychiatric disorders, parents reported significantly higher median scores for perceived impact of the CP condition on symptoms, duration of the condition, and impact on leisure activities, compared to those who had less severe motor disability and/or intellectual abilities within the normal range. Conclusions We propose that illness perception should be included in the follow-up of children with CP, as it may provide a mutual understanding between the child/family and professionals involved in follow-up services, with possible impact on treatment adherence and outcome of the condition