Experiences of stigma in people with epilepsy : A meta-synthesis of qualitative evidence

Mayor, Rebecca and Gunn, Sarah and Reuber, Marcus and Simpson, Jane (2022) Experiences of stigma in people with epilepsy : A meta-synthesis of qualitative evidence. Seizure - European Journal of Epilepsy, 94. pp. 142-160. ISSN 1059-1311

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Abstract

Objective Stigma is reported to cause as much distress and effect on quality of life of individuals with epilepsy as the physical symptoms of seizures. Existing quantitative reviews have focused on describing levels of stigma in epilepsy, but no qualitative review has been undertaken despite the increasing number of relevant studies. We provide a qualitative synthesis to aid the understanding of stigma experiences in adults with epilepsy across different sociocultural contexts. Methods A systematic database search yielded an initial set of 3,032 relevant papers, of which 28 were included. A meta-synthesis was conducted according to a meta-ethnographic approach which has been adapted for health research. Results Five themes were generated: 1) Societal negative perceptions of epilepsy result in discrimination and rejection; 2) Internal attributions of blame lead to negative self-perception and shame; 3) Stigma impacts everyday life and contributes to reliance on others; 4) Stigma is managed through concealment and avoidance; 5) Support from others is beneficial but dependent on own and others’ understandings of epilepsy. These themes highlighted the key individual experiences of epilepsy stigma, which appeared to some degree culture-specific. Culturally-informed misconceptions of epilepsy were readily internalised, resulting in emotional challenges and affecting participants’ lives. Strategies for coping with this were also described. Significance This synthesis characterised the experiences of stigma among adults with epilepsy and highlighted key similarities and differences in these experiences across sociocultural contexts. Educational programmes to inform communities about epilepsy hold importance going forward.