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

OBJECTIVE

Understanding the social-cultural aspects of epilepsy in sub-Saharan Africa will help to improve the situation of people with epilepsy (PWE) in this region.

METHODS

This 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.

RESULTS

Epilepsy 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.

CONCLUSIONS

Poor 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.