Knowledge gaps and uncertainties about epilepsy: findings from an ethnographic study in China

Abstract

Epilepsy represents one of the major brain disorders worldwide. In China, research into how much people with epilepsy know about their condition appears limited. Drawing on data collected as part of a large ethnographic study, we present the experiences and views of Chinese people with epilepsy and their family members, to identify knowledge gaps and uncertainties about epilepsy within selected urban and rural communities. We also examine how respondents’ demographic characteristics influence their knowledge, understanding and beliefs about epilepsy. We found knowledge and understanding of epilepsy to be uneven and context-specific. Hereditary factors were most frequently cited as a potential cause, although their impact remained unclear. Western medicalisation of epilepsy appears less evident in the reports of rural informants, where traditional beliefs continue to shape definitions and treatment. Societal differences within these communities set boundaries on knowledge acquisition. Plotted against these differences, we suggest strategies for proposed educational/psycho-social intervention programmes.