Impact of pediatric epilepsy: voices from a focus group and implications for public policy change

Abstract

Epilepsy affects approximately 0.5-1% of youth, and challenges for them and their families reach far beyond seizures. Quantitative studies have shown that in addition to increased risk for psychosocial difficulties, many experience stigma and barriers to services and resources. As a complement to quantitative analyses, qualitative research further provides unique insight into understanding the impact of epilepsy on youth and families. In the present study, focus groups were held to discuss families' experiences with epilepsy and access to related services. Qualitative analysis revealed three themes highlighting medical, educational, and social challenges of youth with epilepsy. Implications include recommendations for improvements in public awareness and public policy change.