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 complem...

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Bibliographic Details
Published in:Epilepsy & behavior 2009-09, Vol.16 (1), p.161-165
Main Authors: Wagner, Janelle L, Sample, Pat L, Ferguson, Pamela L, Pickelsimer, E. Elisabeth, Smith, Gigi M, Selassie, Anbesaw W
Format: Article
Language:English
Subjects:
Adult
Caregivers
Child
Data Interpretation, Statistical
Education
Epilepsy - complications
Epilepsy - epidemiology
Epilepsy - physiopathology
Female
Focus Groups
Humans
Impact of epilepsy
Insurance, Health
Male
Neurology
Parents
Pediatric epilepsy
Peer Group
Public Policy
Qualitative research
Risk Assessment
Schools
Seizures - epidemiology
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Summary: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.
ISSN:1525-5050
1525-5069
DOI:10.1016/j.yebeh.2009.07.008