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The Stigma of Epilepsy: A European Perspective

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Baker, Gus A., Brooks, Jayne, Buck, Debbie, Jacoby, Ann·2000·Epilepsia

DOI 10.1111/j.1528-1157.2000.tb01512.x

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Abstract

PURPOSE: To study the stigma of epilepsy in a European sample. METHODS: Clinical and demographic details and information about patient-perceived stigma was collected by using self-completed questionnaires mailed to members of epilepsy support groups. RESULTS: Stigma data were collected from >5,000 patients living in 15 countries in Europe. Fifty-one percent reported feeling stigmatised, with 18% reporting feeling highly stigmatised. High scores were correlated with worry, negative feelings about life, long-term health problems, injuries, and reported side effects of antiepileptic drugs (AEDs). Cross-cultural comparisons revealed significant differences between countries. A multivariate analysis identified impact of epilepsy, age of onset, country of origin, feelings about life, and injuries associated with epilepsy as significant contributors on scores on the stigma scale. CONCLUSIONS: This study confirms the findings of previous studies that have identified the importance of both clinical and nonclinical factors in understanding the stigma of epilepsy. The results of cross-cultural differences require further explanation, and much more research should be conducted to reduce the stigma associated with epilepsy.

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Authors: Baker, G. A., Brooks, J., Buck, D., & Jacoby, A.
Affiliations: Walton Centre (GB)
Newcastle University (GB)
Corresponding author: Baker, Gus A.
ORCID: Baker, Gus A.
Venue: Epilepsia
Publisher: Wiley
Published: 2000-12
Volume: 41
Issue: 1
Pages: 98-104
ISSN: 0013-9580 (ISSN-L)
1528-1167
DOI: 10.1111/j.1528-1157.2000.tb01512.x
OpenAlex: W2136689353
Cited by: 357
References: 40
Citations by year: 2026: 5 · 2025: 10 · 2024: 13 · 2023: 12 · 2022: 11 · 2021: 13 · 2020: 19 · 2019: 12 · 2018: 19 · 2017: 17 · 2016: 22 · 2015: 22 · 2014: 25 · 2013: 18 · 2012: 18
FWCI: 5.41
Type: journal article
Language: en
Open access: green
doi.org
Licence: onlinelibrary.wiley.com/termsAndConditions#vor (vor, 1705 d)
Locations: Epilepsia (publishedVersion)
PubMed (publishedVersion)
Research Explorer (The University of Manchester) (publishedVersion)
Newcastle University ePrints (Newcastle Univesity)
Topics: Health Sciences › Medicine › Clinical Neurology › Epilepsy research and treatment
Health Sciences › Medicine › Psychiatry and Mental health › Mental Health Treatment and Access
Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
Keywords: epilepsy, stigma, cross-cultural comparison, age of onset, antiepileptic drug adverse effects, quality of life, stigma reduction
MeSH terms: Adolescent, Adult, Aged, Cross-Cultural Comparison, Epilepsy, Europe, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, Regression Analysis, Self-Help Groups, Stereotyping

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The Stigma of Epilepsy: A European Perspective

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