Women's perspectives on epilepsy and its sociocultural impact in south western Nigeria

Abstract

Background There has been little study of the specific implications of living with epilepsy for women in societies where they already face gender based marginalization. Purpose Understanding the sociocultural aspects of epilepsy in women will help to improve the management of epilepsy in the community.

Methods A series of six focus groups were held in urban and rural Southwest Nigeria.

Results Epilepsy was commonly attributed to a spiritual attack, witchcraft and other supernatural causes. Denial of the diagnosis of epilepsy was common among women with nocturnal or focal seizures. Majority of women with epilepsy preferred multiple modalities of care in the following order: traditional, spiritual and western. The cost of traditional care was astronomical and most were already impoverished by the time they sought western care. WWE experienced stigma, social exclusion, isolation particularly from paternal relations, in -laws, and community members. Epilepsy related stigma contributed to schooling problems, difficulty in getting married, separation, divorce and problems with childcare and role fulfilment. One unanticipated result of this study was that public announcements made to identify rural study participants created a demand for western health services in rural populations previously unaware that epilepsy could be controlled through western medication.

Conclusion Women with epilepsy face significant and persistent social, economic and cultural barriers. There is the need to educate women, their family and community members to reduce misconceptions and stigma. Community based medical treatment can be improved by taking into consideration the surrounding social, economic and cultural challenges faced by women with epilepsy. The care of epilepsy need to be incorporated into the primary health care system; regular awareness campaigns to be carried out in order to improve knowledge and attitudes and reduce stigma and social exclusion of women with epilepsy. Specific social welfare programmes and educational programme should be established to encourage the full integration of women with epilepsy in the society.