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 is a common chronic neurological disease. One of its characteristics is that it can bring severe stigma for patients. At the same time as controlling the epileptic seizures, taking appropriate measures to reduce the stigma of epilepsy is an important aspect of any comprehensive intervention strategy. We examined the views of 106 participants of different target groups, including patients with epilepsy (PWE), their family members, neighbors, teachers, employers, community administrators, doctors and nurses, using one‐to‐one in-depth interviews and group discussions. The discussions covered the following aspects related to epilepsy: the participants' understanding of epilepsy, the patients' own perception of epilepsy, attitudes of the surrounding people, the social and cultural environment, social support available to them, and government regulations and policies. We found that the stigma of epilepsy is a very negative self-feeling from the patients' perspective. Many complex and diverse factors determine its formation and severity. The stigma of epilepsy, in a particular social and cultural context, can be demonstrated at the internalized, interpersonal and institutional levels. Hence, we suggest that effective measures to alleviate stigma should be based on ways of eliminating factors that cause institutional stigma. Additionally, depending on the specific circumstances of PWE, a personalized approach to eliminate factors that cause internalized and interpersonal stigma needs to be adopted. Only by addressing impacting factors at each of these three levels can the stigma of PWE in China be alleviated or even eliminated.

► In the socio-cultural context of rural China, epilepsy stigma is associated with highly negative experiences for patients. ► Stigma is demonstrated at internalized, interpersonal and institutional levels, each clearly linked to lived experience. ► Institutional level factors can be addressed by supporting relevant communities in medical care, education and employment. ► Additionally, a personalized intervention approach is required to erase interpersonal and internalized stigma. ► Epilepsy stigma in China can only be effectively alleviated by addressing factors at each level.