Experiences of persons with epilepsy and their families as they look for medical and community care: a focus group study from South Carolina

Abstract

Epilepsy affects a larger number of individuals than previously thought-up to 2% of the population-and its effects reach further. Yet epilepsy, with its associated lingering stigma and fear, has remained in the background in terms of services and research. Traditional quantitative research often falls short when trying to describe the impact of epilepsy on the lives of individuals and their families. In the present study, focus groups were held throughout South Carolina to discuss individuals' experiences with accessing epilepsy-related services and health care, and what life with epilepsy is like. Following qualitative data analysis, findings included two themes. One theme focuses on the ongoing search for services and help. The second theme concerns the experiences of living life with epilepsy. Also highlighted are recommendations for potential improvements in public awareness and professional training, and helpful interventions.