Mayor, R., Gunn, S., Reuber, M. orcid.org/0000-0002-4104-6705 et al. (1 more author) (2022) Experiences of stigma in people with epilepsy: a meta-synthesis of qualitative evidence. Seizure, 94. pp. 142-160. ISSN 1059-1311
Abstract
Objective
Stigma is reported to cause as much distress and effect on quality of life for 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 dependant 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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2021 British Epilepsy Association. This is an author produced version of a paper subsequently published in Seizure. Uploaded in accordance with the publisher's self-archiving policy. Article available under the terms of the CC-BY-NC-ND licence (https://creativecommons.org/licenses/by-nc-nd/4.0/). |
Keywords: | Seizures; Epilepsy; Discrimination; Experiences; Qualitative |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Sheffield Teaching Hospitals |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 22 Mar 2022 11:47 |
Last Modified: | 27 Nov 2022 01:13 |
Status: | Published |
Publisher: | Elsevier BV |
Refereed: | Yes |
Identification Number: | 10.1016/j.seizure.2021.11.021 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:184968 |