Living with epilepsy: A qualitative study investigating the experiences of young people attending outpatients clinics in Leicester

Epilepsy is a disorder associated with significant psychosocial morbidity, and the effects of a stigmatizing condition upon the everyday life and adjustment of young people is not known. The study involved in-depth interviews with 24 young people (15 females, 9 males), aged between 13 and 25 years, all of whom suffered from epilepsy and attended outpatients clinics. The important issues raised included the finding that a large proportion of the sample (71%) reported having been the victims of prejudice, especially bullying and teasing while they were at secondary school. Additionally, many subjects were critical of the medical profession and support services for people with epilepsy, complaining that they were not meeting their needs appropriately. Most subjects reported feelings of apprehension about telling others about their epilepsy, especially members of the opposite sex, and potential employers. Most described supportive, positive relationships with their families and close friends, and parental overprotection was rarely reported by them as being a significant problem. In addition, an estimate of subjects' adjustment to epilepsy was obtained which appears to indicate that the majority were coping well with their condition, even though it may have been resented by some of them.