Epilepsy stigma in Asia: the meaning and impact of stigma

ABSTRACT

Stigma is conceptually broad and culturally variable. Understanding stigma from the conceptual theories, culturally application based on the word stigma in other languages, the definition of stigma and its synonyms, as well as the medical implications in other stigmatized disease such as AIDS, will help us to understand the complexity of stigma in epilepsy. This review investigated the meaning and types of stigma from different perspectives, leading to staging stigma into 5 levels, i.e. social identity, stereotype, prejudice, discrimination and social disability. In addition to the conventional categorization of stigma into social, felt, self-perceived or internalized stigma, new categories of stigma i.e. personal and general attitudes towards epilepsy based on a newly developed Public Attitudes Toward Epilepsy (PATE) scale was introduced. Courtesy stigma was further elaborated in related to Asian culture. Based on well-established and recently developed theories, the causation and impact of epilepsy stigma was discussed in an Asian context, especially from the aspects of language and society values which are culturally specific. Integrating these theories of causation, illness and stereotype perceptions were proposed to be the mediating mechanism of stigma, which led to the development of a practical and multi-dimensional stigmatization model, aiming to guide, widen and deepen the scope of future stigma research in epilepsy. Using the established model, together with review of related studies, research priorities in epilepsy stigma research especially in Asia focusing on five aspects, i.e. expanding population studies especially on significant others, understanding stigma from personal attitude perspective, investigating the cultural and social causation of stigma, and the impacts of stigma on patients as well as the family members, were proposed.