Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups

Severe epilepsy in children and young adults can significantly affect the lives of their caregivers. However, the lack of a reliable and valid measure of caregiver impact has limited our understanding of the scope and correlates of this impact, as well as our ability to measure the effects of treatments that could lessen it. The purpose of this study was to facilitate focus groups and interviews with an international group of clinician experts and caregivers to identify the most important domains that should be assessed in a measure of caregiver impact. Ten specific subdomains emerged from the panel discussions, which could be classified into the four overarching categories of physical health, mental health, social function, and financial resources. The caregivers highlighted the impact on the subdomains of sleep and fatigue as most critical. A review of existing caregiver impact measures confirmed that there is no measure currently available that assesses all of these relevant domains, indicating the need for the development of such a measure. The current findings highlight the significant life effects of caring for a child with severe epilepsy and can be used to inform the development of such a tool. •Caregiving for a child with Dravet syndrome has a significant impact on the lives of caregivers.•The lack of a reliable and valid measure of caregiver impact has limited our understanding of the scope and correlates of this impact.•Focus groups and interviews with clinician experts and caregivers identified four global domains and 10 subdomains of caregiver impact.•No existing measure of caregiving impact assesses all of these relevant domains, indicating the need for the development of such a measure.