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Women’s Experiences Living with Epilepsy in Zambia

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  • 1 Chikankata Health Services Epilepsy Care Team, Mazabuka, Zambia and Michigan State University’s International Neurologic and Psychiatric Epidemiology Program, East Lansing, Michigan; Department of Pediatrics and Child Health, University of Zambia, Lusaka, Zambia; Department of Medicine, University of Zambia, Lusaka, Zambia; Chainama Hills Hospital, Lusaka, Zambia; Department of Psychiatry, University of Zambia and Chainama Hills Hospital, Lusaka, Zambia
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Epilepsy-associated stigma is a well-recognized phenomenon that adversely impacts the lives of people with epilepsy (PWE). The burden of stigma follows power differentials, with socially and economically disenfranchised groups being particularly susceptible. To guide instrument development for quantitative studies, we conducted a series of focus group discussions among PWE and found that women with epilepsy experienced especially adverse social and economic problems because of epilepsy-associated stigma. The social burden of the disease largely outweighed the medical burden. Women revealed seizure worries related to accidental and intentional injury and the risk of breaking taboos as well as limitations in role fulfillment and extremes of social rejection by family and community. Our findings have implications for access to care and care delivery for vulnerable populations with epilepsy.

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