Project on Stigma – Collaborative Research on Epilepsy Stigma (CREST)
Understanding and dispelling stigma is one of the stated aims of the Global Campaign Against Epilepsy (GCAE) Out of the Shadows. Within the Campaign in 2003, a grant application for a pilot project on stigma in epilepsy was awarded by the Fogarty Foundation (National Institutes of Health, USA) to a group of European experts under the leadership of Prof A Jacoby, University of Liverpool. This project involved ethnographic studies to explore prevailing beliefs and attitudes to epilepsy in two developing countries, China and Vietnam. The project defined theoretical models of stigma and its link to disease burden; and validated, culturally specific measures of outcome were formulated for use in future intervention studies. Throughout its implementation, the project social science capacity in the participating countries facilitated strong collaboration for future research.
Aims and objectives
- To inform development of culturally appropriate approaches to reducing stigma and discrimination associated with epilepsy in the developing world
- To develop a cross-culturally relevant theoretical model of stigma
- To develop culturally appropriate measures of stigma and discrimination, for use as outcome measures in future intervention programmes
- To enhance social science research capacity in China and Vietnam and to develop strong collaborations for future research
- Comprehensive literature reviews
- Rapid Appraisal studies in China and Vietnam
- Detailed ethnographic studies
- Development of a conceptual framework
- Identification of assessment methods and outcomes for future educational campaigns
The Literature search was aimed at identifying primary research or reviews on the effectiveness of stigma reduction strategies; including anti-stigma campaigns, educational intervention, attitude or behavioural change intervention. Out of 103 articles published between 1980 and 2005, forty (40) were concerned with mental illness related stigma, 19 with epilepsy, 12 with AIDS, 12 with various pathological conditions (drug addiction, leprosy, obesity, diabetes etc) and 21 discussed in general the illness-related stigma and the strategies suitable to fight it.
The results of the literature search guided further developments of the project through ethnographic studies exploring the prevailing beliefs and attitudes to epilepsy in China and Vietnam. Using in-depth interviews and focus groups, data were gathered from people with epilepsy, their family members, their local communities and their general and specialised health care workers. The study findings provide insights into the dimensions of epilepsy stigma identifiable in these two countries, and highlight the similarities and differences in order to gain an understanding of:
- Ideas held about epilepsy (explanatory models of causation, treatment, prevention)
- The impact of these ideas on attitudes towards having epilepsy
- Ideas and practices relating to its management as a health condition
- Ideas and practices relating to its management as a potential source of stigma
The beliefs about causes, course and treatment of epilepsy, and QOL impacts in key target groups were investigated 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.
By exploring meanings attached to epilepsy in these two cultural contexts, reasons behind previously documented negative attitudes have been clarified and foci for future intervention studies identified .
Meanings of epilepsy in its sociocultural context and implications for stigma: Findings from ethnographic studies in local communities in China and Vietnam. Jacoby A, Wang W, Dang Vu T., Wu J., Snape D, Aydemir N, Parr J, Reis R, Begley C, de Boer H, Prilipko L, Baker G. Epilepsy and Behavior (2007), doi:10.1016/j.yebeh.2007.10.006