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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

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

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Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence . / Mayor, Rebecca; Gunn, Sarah; Reuber, Marcus et al.
In: Seizure - European Journal of Epilepsy, Vol. 94, 31.01.2022, p. 142-160.

Research output: Contribution to Journal/MagazineJournal articlepeer-review

Harvard

Mayor, R, Gunn, S, Reuber, M & Simpson, J 2022, 'Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence ', Seizure - European Journal of Epilepsy, vol. 94, pp. 142-160. https://doi.org/10.1016/j.seizure.2021.11.021

APA

Vancouver

Mayor R, Gunn S, Reuber M, Simpson J. Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence . Seizure - European Journal of Epilepsy. 2022 Jan 31;94:142-160. Epub 2021 Nov 27. doi: 10.1016/j.seizure.2021.11.021

Author

Mayor, Rebecca ; Gunn, Sarah ; Reuber, Marcus et al. / Experiences of stigma in people with epilepsy : A meta-synthesis of qualitative evidence . In: Seizure - European Journal of Epilepsy. 2022 ; Vol. 94. pp. 142-160.

Bibtex

@article{2b9a853dbd58445788c7e3e659721030,
title = "Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence ",
abstract = "ObjectiveStigma 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.MethodsA 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.ResultsFive 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{\textquoteright} 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{\textquoteright} lives. Strategies for coping with this were also described.SignificanceThis 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.",
keywords = "seizures, epilepsy, discrimination, experiences, qualitative",
author = "Rebecca Mayor and Sarah Gunn and Marcus Reuber and Jane Simpson",
note = "This is the author{\textquoteright}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",
year = "2022",
month = jan,
day = "31",
doi = "10.1016/j.seizure.2021.11.021",
language = "English",
volume = "94",
pages = "142--160",
journal = "Seizure - European Journal of Epilepsy",
issn = "1059-1311",
publisher = "W.B. Saunders Ltd",

}

RIS

TY - JOUR

T1 - Experiences of stigma in people with epilepsy

T2 - A meta-synthesis of qualitative evidence

AU - Mayor, Rebecca

AU - Gunn, Sarah

AU - Reuber, Marcus

AU - Simpson, Jane

N1 - 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

PY - 2022/1/31

Y1 - 2022/1/31

N2 - ObjectiveStigma 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.MethodsA 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.ResultsFive 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.SignificanceThis 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.

AB - ObjectiveStigma 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.MethodsA 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.ResultsFive 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.SignificanceThis 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.

KW - seizures

KW - epilepsy

KW - discrimination

KW - experiences

KW - qualitative

U2 - 10.1016/j.seizure.2021.11.021

DO - 10.1016/j.seizure.2021.11.021

M3 - Journal article

VL - 94

SP - 142

EP - 160

JO - Seizure - European Journal of Epilepsy

JF - Seizure - European Journal of Epilepsy

SN - 1059-1311

ER -