The stigma of epilepsy: a European perspective
Open accessAbstract
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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Having epilepsy is associated with perceived stigma, especially in the presence of comorbid mood disorders and low self-esteem.
“Having epilepsy is associated with perceived stigma, especially in the presence of comorbid mood disorders and low self-esteem [5, 6].”
From A prospective service evaluation of acceptance and commitment therapy for patients with refractory epilepsy (2015) · cites this paper as [5]
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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
- 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
- Locations
- Epilepsia (publishedVersion)
- PubMed (publishedVersion)
- Research Explorer (The University of Manchester) (publishedVersion)
- Newcastle University ePrints (Newcastle Univesity)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Epilepsy research and treatment
- Social Sciences › Psychology › Social Psychology › 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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