Parental perception, worries and needs in children with epilepsy

Despite advancement in medical care, prejudice and misunderstanding of epilepsy still exist. In this study, we investigate the problems faced by epileptic children, at home and in school, and make suggestions for improvement. Questionnaires were randomly distributed to parents of epileptic children attending normal and special classes (groups A and B, respectively). Return of questionnaires was anonymous. Ninety-one percent responded. Of the responders, 56 children were in Group A and 30 in Group B. Chronic and intractable epilepsy was more frequently observed in Group B than in Group A patients (47% vs 14%, p < 0.05). Main family concerns were seizures, school performance and side effects of medication. Half of the parents complained that their children were more restless and short-tempered. Only 43% of parents were aware that seizures were caused by abnormal brain discharges. Twenty percent thought swimming should be prohibited even if seizures could be controlled. Schools were informed of the disease by 84% of the families. Only 29% of parents knew the name and dose of the current medication. Information was considered adequate in 27% of patients. Drug compliance was better in epileptic children with associated handicaps than in those without handicaps. Half of the parents requested more information about epilepsy and closer communication between teachers and physicians. Conclusions: To establish comprehensive care that satisfies the needs of epileptic children and their families, further training of medical specialists in epilepsy and enhancement of networks among relevant organizations are needed.