Karen Robinson and Sharlene Cassel, from EDID-GHDI partner organization Epilepsy South Africa, conducted a study with the support of a thematic initiatives grant from EDID-GHDI.
They explored the roles, challenges, and support needs of women caregivers who support individuals living with epilepsy and neurological disorders. These caregiving roles are largely undertaken by women, most of whom are unpaid family members. Despite their important role, they continue to be under-recognized in policy and service delivery; instead, caregiving is seen as a woman’s responsibility due to cultural norms.
Their final report highlights how caregivers navigate a complex intersection of love, faith, exhaustion, and resilience, often describing caregiving as both a calling and a burden. Their stories underscore the urgent need for structural support systems that recognize unpaid care as both social and economic labour.
Read the EDID-GHDI Research/Thematic Report:
Robinson, K., and Cassel, S. (2026). Survey: The Roles, Needs, and Experiences of Women Caregivers of People with Epilepsy & Neurological Disorders in South Africa [Report]. EDID-GHDI, University of Guelph.