Psychosocial and economic problems of parents of children with epilepsy

The parents of children with epilepsy (PCE) face multiple psychosocial and economic problems that are often neglected. We undertook this study to asce rtain these problems among the patients attending a tertiary referral cente r for epilepsy in India. A structured questionnaire was administrated to pa rents of 50 children aged between 5-10 years and having epilepsy for more t han 1 year's duration. Some 52% of the children had partial epilepsy whilst the remaining had generalized epilepsy. The median seizure frequency was o ne per 6 months. The majority of the patients (86%) were living in villages . The family income was less than 1000 Rs per month (1 USD = 42 INR) for 66 % of the patients. A decline in social activities, after the onset of epile psy in their children, was reported bg 80% of the parents. Daily routines w ere significantly affected in over 75% of the parents. Parents had been exp eriencing frustration (52%) and hopelessness (76%), whilst 60% were in fina ncial difficulties. The most important item of expenditure was cost of drug s or cost of travel to hospital for 54% and 36% parents respectively. Impai red emotional status and poor social adaptation were co-related with the se verity of epilepsy (frequent seizures/generalized seizures/attention disord er) and low economic status of the parents. These observations need to be b orne in mind while organizing rehabilitation programs for epilepsy.