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  • EpiStigmaReviewNov2021Rev

    Rights statement: This is the author’s version of a work that was accepted for publication in Seizure. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Seizure, 94, 2022 DOI: 10.1016/j.seizure.2021.11.021

    Accepted author manuscript, 675 KB, PDF document

    Embargo ends: 27/11/22

    Available under license: CC BY-NC-ND: Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License

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

Research output: Contribution to journalJournal articlepeer-review

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<mark>Journal publication date</mark>31/01/2022
<mark>Journal</mark>Seizure - European Journal of Epilepsy
Volume94
Number of pages19
Pages (from-to)142-160
Publication StatusPublished
Early online date27/11/21
<mark>Original language</mark>English

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.

Bibliographic note

This is the author’s version of a work that was accepted for publication in Seizure. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Seizure, 94, 2022 DOI: 10.1016/j.seizure.2021.11.021