Meanings of epilepsy in its socio-cultural context and implications for stigma: findings from ethnographic studies in local communities in China and Vietnam

Abstract

We investigated beliefs about causes, course and treatment of epilepsy and QOL impacts in key target groups, using ‘mini-ethnographies’ involving 141 in-depth interviews and 12 focus groups in China, and 84 in-depth interviews and 16 focus groups in Vietnam. Data were analysed thematically, using a qualitative data analysis package. In both countries, beliefs about causes and triggers for epilepsy and seizures were a complex interweaving of western, traditional and folk medicine concepts. Epilepsy was understood to be chronic, not curable, but controllable; and seen as enormously socially disruptive, with wide-ranging impacts for QOL. Our findings suggest a more ‘embodied’ and benign set of theories about epilepsy than in some other cultural contexts; nonetheless, PWE are still seen as having low social value and face social rejection. By exploring meanings attached to epilepsy in these two cultural contexts, we have clarified reasons behind previously documented negative attitudes and foci for future intervention studies.