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Epilepsy Behav. 2002 Dec;3(6S2):33-37.

ILAE/WHO "Out of the Shadows Campaign" Stigma: does the flag identify the cargo?

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Medical Anthropology Unit, University of Amsterdam, Oudezijds Achterburgwal 185, 1012 DK, Amsterdam, The Netherlands


People with epilepsy around the globe are confronted with different levels and types of stigmatization, which may vary greatly among geographical regions and cultures. Furthermore, striking differences in social research into the stigma surrounding epilepsy can be seen across cultures. For instance, research projects taking place in Europe and North America place greater emphasis on perceived stigma (i.e., the type/amount of discrimination a person expects to encounter), whereas studies in the southern hemisphere (e.g., Africa south of the Sahara) emphasize enacted stigma (i.e., the type/amount of discrimination actually encountered). Cross-cultural research into the stigma of epilepsy may benefit from a multidisciplinary team from various cultural backgrounds, to develop a shared theoretical framework and shared research tools, which allow for contextual and cross-cultural adaptation.


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