Pediatric epilepsy representations among children/adolescents and parents: the role of age, gender, and clinical variables

According to the common-sense model of self-regulation, illness representations influence treatment adherence and, thus, health status. As pediatric epilepsy management is usually shared between children/adolescents and parents, we aimed to assess and compare illness representations of both groups. Additionally, the role of gender and clinical variables in pediatric epilepsy representations was explored. One hundred and seventy-three dyads of Portuguese children/adolescents with epilepsy and parents were assessed with the Brief Illness Perception Questionnaire. Pediatric epilepsy was perceived as a moderate threat. Although epilepsy symptoms and consequences were mainly perceived as low, the emotional impact of the illness was moderate to high. Compared to children/adolescents, parents presented higher understanding of epilepsy, higher concern, and more intense emotional responses to the illness. Adolescents understood the illness better than children. Gender did not relate to illness representations among children/adolescents or parents. Epilepsy severity and control were the clinical variables most strongly associated with illness representations. Pediatric epilepsy representations should be routinely assessed separately for children/adolescents and parents, particularly following changes in epilepsy severity. When pediatric illness representations are found to be incongruent with medical information, such beliefs should be challenged, preferably with a tailored approach.