Epilepsy is the world's most common brain disorder, affecting some 50 million people worldwide. There is general agreement that stigma and exclusion are common features of epilepsy in both the developed and developing countries and a major contributor to the burden associated with the condition. Reducing the stigma of epilepsy is therefore key to reducing its impact and so improving quality of life. In order for effective health policy initiatives to be implemented to reduce the stigma of epilepsy, a number of issues first need to be addressed. These include addressing cultural variations in the meaning attached to having epilepsy and hence the way in which stigma is played out; and defining appropriate outcomes and methods for assessing them. This project will address these issues and so inform development of culturally appropriate approaches to reducing stigma and discrimination. The project will involve ethnographic studies to explore prevailing beliefs and attitudes to epilepsy in two developing countries, China and Vietnam. It will define theoretical models of stigma and its link to disease burden. It will develop validated and culturally specific measures of outcome for use in future intervention studies. Through its implementation, the project will enhance social science research capacity in these two countries and facilitate development of strong collaborations for future related research activities.
| Guo, Wencui; Wu, Jianzhong; Wang, Wenzhi et al. (2012) The stigma of people with epilepsy is demonstrated at the internalized, interpersonal and institutional levels in a specific sociocultural context: findings from an ethnographic study in rural China. Epilepsy Behav 25:282-8 |
| Yang, Rong-Rong; Wang, Wen-Zhi; Snape, Dee et al. (2011) Stigma of people with epilepsy in China: views of health professionals, teachers, employers, and community leaders. Epilepsy Behav 21:261-6 |
| Aydemir, Nuran; Trung, Dang Vu; Snape, Dee et al. (2009) Multiple impacts of epilepsy and contributing factors: findings from an ethnographic study in Vietnam. Epilepsy Behav 16:512-20 |
| Snape, D; Wang, W; Wu, J et al. (2009) Knowledge gaps and uncertainties about epilepsy: findings from an ethnographic study in China. Epilepsy Behav 14:172-8 |
| Jacoby, Ann; Snape, Dee; Baker, Gus A (2005) Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol 4:171-8 |
