Abstracts

Rationale: The psychosocial burden on children with epilepsy and their families has been documented although often without specific reasons why epilepsy is so bad and the effects of the disease on the child and the parent can be vastly different. Do children and parents view epilepsy similarly? Methods: Children with epilepsy who attended a one-week summer camp specifically for children with epilepsy and their parents were asked to participate in a voluntary survey (formal questionnaire). Full parental consent was obtained. Results: Twenty campers, aged 9 to15 years, and their parents responded. Thirty-eight percent of campers and 30% of parents chose being thought of as different or being teased as the worst thing about having epilepsy whereas only 37% and 33% respectively, chose the actual seizures themselves. Over half of children and parents would want to have fewer or no seizures if they could change one thing. The majority of children and parents, 65% and 93%, agree that epilepsy camp is fun while the other third of children cite it as a place where they feel normal. Conclusions: Overall, children with epilepsy and their parents tend to view the burdens of epilepsy the same. We believe that it is dramatic that despite the morbidities and potential risks of the seizures and treatments themselves, the majority of children are most concerned about the stigma attached to having epilepsy! Epilepsy camps and similar activities are beneficial for the children and their families to feel better, normal and be more independent with their diagnosis.