Social-cultural aspects of epilepsy in Kilimanjaro Region, Tanzania: Knowledge and experience among patients and carers

ObjectiveUnderstanding the social-cultural aspects of epilepsy in sub-Saharan Africa will help to improve the situation of people with epilepsy (PWE) in this region.MethodsThis qualitative study comprised interviews with 41 PWE and their carers. Participants were identified from a large community-based epidemiological study of epilepsy conducted in 2009.ResultsEpilepsy was commonly ascribed to witchcraft and curses. Nearly all PWE demonstrated pluralistic care-seeking behavior, including the use of prayers and traditional healers alongside modern care. PWE reported discrimination as a result of their condition. The majority of PWE had suffered burns during seizures.ConclusionsPoor knowledge and strong cultural and religious beliefs characterize the experience of PWE in this population. Epilepsy-related stigma contributes to overall disease burden, and PWE face exclusion across major life domains. There is a need to educate communities and inculcate perceptions and attitudes that promote early detection of epilepsy and early care-seeking behavior.

Research Highlights►Epilepsy in Tanzania is often ascribed to supernatural causes. ►Patients with epilepsy in Tanzania seek care late and demonstrate pluralistic care-seeking behavior. ►Although patients seek medical help for seizures, a diagnosis of epilepsy is rarely given. ►Because of epilepsy-related stigma, patients face exclusion across major life domains. ►Community education should focus on reducing stigma and promoting early care-seeking behavior.