Prejudices against people with epilepsy as perceived by affected people and their families

Abstract

Problem: Prejudices can impair social participation of people with epilepsy.

Methods: From 2019 to 2020, we invited people with epilepsy and their relatives across Germany to fill in a questionnaire.

Results: Two hundred and thirty people with epilepsy (PWE, median age: 40 years; min./max.: 19/83; 66% female) and 103 relatives (REL, median age: 42 years; min./max. 23/70; 83% female) took part in the survey. 44% PWE and 40% REL said prejudices against PWE had not declined in recent years. Of PWE, 64% reported they had experienced prejudices themselves. In an open question with multiple answers possible, 71% of the PWE described concrete prejudices against PWE, 62% of the REL did so. The reported prejudices concerned symptoms of epilepsy (37% PWE; 23% REL), academic or occupational performance (47% PWE; 38% REL), social or family life (27% PWE, 29% REL), and other topics (7% PWE, 4% REL). Of PWE, 88% said all or almost all relatives knew about their condition, 74% stated this applied to all or almost all friends, and 48% told all or almost all colleagues about their epilepsy. Of PWE, 94% would want to know if a relative had epilepsy, 87% would like to know about a friend's epilepsy, 70% about a colleague's epilepsy. Fear of stigmatization was a reason for not always communicating the condition according to 20% PWE and 63% REL. None of PWE and 16% of REL named shame as a reason.

Conclusion: People with epilepsy still experience prejudices and fear of stigmatization hinders an open communication about the condition.

Keywords: Attitudes; People with epilepsy; Prejudices; Relatives; Stigmatization.