Reports of the experience of epilepsy in a rural South African village

It has become increasingly acknowledged that the social and psychological consequences of epilepsy may be more debilitating than the epileptic seizures themselves. This study, which formed part of an ongoing community health project which was carried out in the South African village of Mamre, was aimed at gaining an understanding of some of these psychosocial aspects. Sixteen respondents were interviewed, with the use of a semi-structured interview schedule. The findings revealed that respondents, as well as their families, had accepted the epilepsy and learnt to cope with it, although some respondents felt stigmatized by the epilepsy and made various attempts to conceal it from outsiders. Problems which were caused by epilepsy included the fear of going out unaccompanied, as well as forgetfulness and irritable mood. Few respondents had epilepsy which could be described as well-controlled, yet none admitted being dissatisfied with their treatment. Implications of the study included the need to assist the respondents and their families to better understand the management of epilepsy, so that every effort would be made to attain maximal seizure control.