Childhood epilepsy: what parents know, believe and do

This was a descriptive study to assess parents' knowledge of epilepsy in their children at the Klinik Pakar Pediatrik in Universiti Kebangsaan Malaysia from 1.1.93-31.6.93. Factors that influence the level of knowledge were examined. Our hypothesis was that the level of knowledge was low and level of education and social factors were important. Fifty consecutive parents were interviewed during the clinic appointments. The questionnaire consisted of 25 questions which had been used in a survey on epilepsy in Australia. In order to cater for the local population the questions were modified by adding new questions pertaining to local situation. The results showed that 90% (45/50) of parents were unaware of the type of epilepsy their children were suffering from. 50% (25/50) of parents knew the underlying cause of epilepsy of which 32% (8/25) attributed it to brain disease, 8% (2/25) to birth defects and 10% (3/25) to fever. Factors such as duration of epilepsy, parental education and racial differences between Malay and other races (Chinese, Indians) did not reach any statistical significance (p > 0.05). 80% of patients (30/50) were on monotherapy. However, 90% (45/50) of parents were unaware of their children's medications. 82% of parents (31/50) knew that the anti-convulsants would only control their children's convulsions. Only 10% (8/50) of parents knew the acute management of seizures. Wrong practices such as inserting spoons (5/50) or massaging their limbs (17/50) during an acute attack were still common. 70% of parents (35/50) attended the follow-up clinics hoping that their children's epilepsy would be cured. Parents with low economic status and of children with duration of epilepsy of less than five years had been coming to the clinic regularly. (p = 0.01 and p = 0.02 respectively). In conclusion, the overall knowledge of these parents was poor. In order to improve the management of epilepsy, it is necessary to educate parents with reading materials and effective educational packages.