Epilepsy Impacts Families and Communities: Persistent Gaps and Inequities

Effect of Epilepsy on Families, Communities, and Society

Adam P. Ostendorf , Satyanarayana Gedela Seminars in Pediatric Neurology Volume 24, Issue 4, November 2017, Pages 340–347

The effect of epilepsy extends beyond those with the diagnosis and impacts families, communities and society. Caregiver and sibling quality of life is often negatively affected by frequent seizures, comorbid behavioral and sleep disorders and stigma surrounding the diagnosis. Furthermore, the negative effects can be magnified by individual coping styles and resources available to families of those with epilepsy. Beyond the family and immediate caregivers, epilepsy affects local communities by drawing additional resources from education systems. The direct costs of caring for an individual with epilepsy and the indirect costs associated with decreased productivity place financial strain on individuals and health care systems throughout the world. This review details factors affecting family and caregiver quality of life and provides several approaches through which health care providers may address these concerns. Furthermore, we examine the financial effect of epilepsy on society and review emerging strategies to lessen health care use for individuals with epilepsy.