“It shouldn’t be something that's evil, it should be talked about”: A phenomenological approach to epilepsy and stigma

Abstract

The concepts of felt and enacted stigma (Scambler and Hopkins, 1986(1)) are well established in epilepsy research. However, more recent research tends to focus on either those doing the stigmatising or utilises quantitative methodologies, exploring daily occurrences of stigma for those with epilepsy. The current study aims to explore the concept of felt stigma in today's society, arguing that a return to a phenomenological approach would allow people with epilepsy to discuss issues of importance to them, seeing them as the experts on this concept (Byrne, 2001(17)). Fifty-two people with epilepsy were recruited via an advertisement on the Epilepsy Action website, thirty of whom took part in a follow-up interview. The interviews were analysed following Lemon and Taylor's (1997)(22) phenomenological approach. Three themes emerged, surrounding issues of embarrassment of having the condition, non-disclosure of the diagnosis and misconceptions of the condition. These findings support previous research which argues that people with epilepsy perceive a stigma due to feeling different from the rest of society, meaning that they conceal their condition as a way of managing such stigma and thus need to renegotiate their social identity. Additionally, the moderating role of education in increasing knowledge of epilepsy, with a view to reducing felt stigma, was evident. The findings indicated a need to promote epilepsy awareness programmes as a means of increasing public knowledge of epilepsy, with the aim of reducing felt stigma.