A meta-synthesis of stigma in epilepsy, and an empirical exploration of self-disgust in epilepsy

Mayor, Rebecca and Simpson, Jane (2020) A meta-synthesis of stigma in epilepsy, and an empirical exploration of self-disgust in epilepsy. PhD thesis, Lancaster University.

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Abstract

Section one of this thesis describes a meta-ethnographic approach to the synthesis of 24 qualitative studies exploring the experiences of stigma in adults with epilepsy across the globe. Five themes were generated: societal negative perceptions of epilepsy result in discrimination and rejection; internal attributions of blame lead to negative self-perception and shame; impact of stigma on everyday life and associated reliance on others; attempts to manage stigma through concealment and avoidance; support from others is beneficial but dependent on own and others’ understandings of epilepsy. The synthesis highlighted the key individual experiences of epilepsy stigma, which appeared to be to some degree culturally specific. Culturally informed misconceptions of epilepsy were readily internalised which resulted in emotional challenges for participants and impacted on participants’ lives. Section two provides an empirical report of a qualitative exploration into the experiences of self-disgust in adults with epilepsy. Three key themes were identified from analysis of the data: being an outsider, “the feeling of being a bit of a freak;” the inescapable presence of self-disgust, “it’s a niggling feeling that something’s not quite right” and preventing exposure, “living a protected life.” People with epilepsy experienced disgust in reaction to the physical symptoms of seizures and these disgust-based feelings appeared to become internalised following others’ disgust reactions. Avoidance as a strategy to manage self-disgust can be protective but may inadvertently maintain self-disgust. Section three provides a critical appraisal of the thesis. This offers a reflective account of the experiences of developing and conducting this research and some of the strengths and weaknesses of the research. The potential implications for clinical practice and future research are discussed, as well as personal reflections of the research process.