Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy-Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy

Churl-Su Kwon¹, Ann Jacoby², Amza Ali³, Joan Austin⁴, Gretchen L Birbeck^{5

6}, Patricia Braga⁷, J Helen Cross⁸, Hanneke de Boer⁹, Tarun Dua¹⁰, Paula T Fernandes¹¹, Kirsten M Fiest¹², Jonathan Goldstein¹³, Sheryl Haut¹⁴, Diane Lorenzetti¹⁵, Janet Mifsud¹⁶, Solomon Moshe^{14

17}, Karen L Parko^{18

19}, Manjari Tripathi²⁰, Samuel Wiebe²¹, Nathalie Jette¹³

Affiliations

¹ Departments of Neurosurgery, Neurology and Population Health Sciences & Policy, Icahn School of Medicine, New York, New York, USA.
² Department of Public Health and Policy, University of Liverpool, Liverpool, UK.
³ Kingston Public Hospital and University of the West Indies, Kingston, Jamaica.
⁴ Indiana University School of Nursing, Indianapolis, Indiana, USA.
⁵ Epilepsy Division, University of Rochester, Rochester, New York, USA.
⁶ Epilepsy Care Team, Chikankata Hospital, Mazabuka, Zambia.
⁷ Facultad de Medicina, Institute of Neurology, Universidad de la República, Montevideo, Uruguay.
⁸ Developmental Neurosciences Programme, UCL-NIHR BRC Great Ormond Street Institute of Child Health, London, UK.
⁹ SEIN - Epilepsy Institute in the Netherlands Foundation, Heemstede, The Netherlands.
¹⁰ Department of Mental Health and Substance Abuse, World Health Organization, Geneva, Switzerland.
¹¹ Department of Sport Science, Faculty of Physical Education, UNICAMP, Campinas, Brazil.
¹² Department of Critical Care Medicine and Department of Community Health Sciences, Hotchkiss Brain Institute, O'Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada.
¹³ Departments of Neurology and Population Health Sciences & Policy, Icahn School of Medicine, New York, New York, USA.
¹⁴ Saul R. Korey Department of Neurology, Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, New York, USA.
¹⁵ Department of Community Health Sciences, University of Calgary and Health Sciences Library, University of Calgary, Calgary, Alberta, Canada.
¹⁶ Department of Clinical Pharmacology and Therapeutics, Faculty of Medicine and Surgery, University of Malta, Msida, Malta.
¹⁷ Department of Pediatrics and Dominick P. Purpura Department of Neuroscience, Albert Einstein College of Medicine, Bronx, New York, USA.
¹⁸ Department of Neurology, University of California at San Francisco, San Francisco, California, USA.
¹⁹ Epilepsy Center, San Francisco VA Medical Center, San Francisco, California, USA.
²⁰ Department of Neurology, All India Institute of Medical Sciences, New Delhi, India.
²¹ Department of Clinical Neurosciences and Department of Community Health Sciences, Hotchkiss Brain Institute, O'Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada.

PMID: 34985782
DOI: 10.1111/epi.17135

Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy-Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy

Churl-Su Kwon et al. Epilepsia. 2022 Mar.

. 2022 Mar;63(3):573-597.

doi: 10.1111/epi.17135. Epub 2022 Jan 5.

Authors

Affiliations

¹ Departments of Neurosurgery, Neurology and Population Health Sciences & Policy, Icahn School of Medicine, New York, New York, USA.
² Department of Public Health and Policy, University of Liverpool, Liverpool, UK.
³ Kingston Public Hospital and University of the West Indies, Kingston, Jamaica.
⁴ Indiana University School of Nursing, Indianapolis, Indiana, USA.
⁵ Epilepsy Division, University of Rochester, Rochester, New York, USA.
⁶ Epilepsy Care Team, Chikankata Hospital, Mazabuka, Zambia.
⁷ Facultad de Medicina, Institute of Neurology, Universidad de la República, Montevideo, Uruguay.
⁸ Developmental Neurosciences Programme, UCL-NIHR BRC Great Ormond Street Institute of Child Health, London, UK.
⁹ SEIN - Epilepsy Institute in the Netherlands Foundation, Heemstede, The Netherlands.
¹⁰ Department of Mental Health and Substance Abuse, World Health Organization, Geneva, Switzerland.
¹¹ Department of Sport Science, Faculty of Physical Education, UNICAMP, Campinas, Brazil.
¹² Department of Critical Care Medicine and Department of Community Health Sciences, Hotchkiss Brain Institute, O'Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada.
¹³ Departments of Neurology and Population Health Sciences & Policy, Icahn School of Medicine, New York, New York, USA.
¹⁴ Saul R. Korey Department of Neurology, Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, New York, USA.
¹⁵ Department of Community Health Sciences, University of Calgary and Health Sciences Library, University of Calgary, Calgary, Alberta, Canada.
¹⁶ Department of Clinical Pharmacology and Therapeutics, Faculty of Medicine and Surgery, University of Malta, Msida, Malta.
¹⁷ Department of Pediatrics and Dominick P. Purpura Department of Neuroscience, Albert Einstein College of Medicine, Bronx, New York, USA.
¹⁸ Department of Neurology, University of California at San Francisco, San Francisco, California, USA.
¹⁹ Epilepsy Center, San Francisco VA Medical Center, San Francisco, California, USA.
²⁰ Department of Neurology, All India Institute of Medical Sciences, New Delhi, India.
²¹ Department of Clinical Neurosciences and Department of Community Health Sciences, Hotchkiss Brain Institute, O'Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada.

PMID: 34985782
DOI: 10.1111/epi.17135

Erratum in

Erratum.
[No authors listed] [No authors listed] Epilepsia. 2022 May;63(5):1283-1284. doi: 10.1111/epi.17219. Epub 2022 Mar 17. Epilepsia. 2022. PMID: 35301711 No abstract available.

Abstract

Objective: To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors.

Methods: Thirteen databases were searched (1985-2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed "felt" or "enacted" stigma and "attitudes" toward persons living with epilepsy.

Results: Of 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an "undesirable difference" and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status.

Significance: Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy.

Keywords: enacted stigma; epilepsy terminology; felt stigma; negative attitudes; negative stereotypes.

PubMed Disclaimer

References

REFERENCES

1. Chong L, Jamieson NJ, Gill D, Singh-Grewal D, Craig JC, Ju A, et al. Children’s experiences of epilepsy: a systematic review of qualitative studies. Pediatrics. 2016;138(3):e20160658.
1. Jones C, Atkinson P, Helen Cross J, Reilly C. Knowledge of and attitudes towards epilepsy among teachers: a systematic review. Epilepsy Behav. 2018;87:59-68.
1. Goffman E. Stigma: notes on the management of spoiled identity. New York, NY: Simon & Schuster; 1963.
1. Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illn. 1986;8:26-43.
1. Weiss MG. Stigma and the social burden of neglected tropical diseases. PLoS Negl Trop Dis. 2008;14(2):e237.

Publication types

Actions
Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions

Grants and funding

LinkOut - more resources

Full Text Sources
- Ovid Technologies, Inc.
- Wiley
Medical
- MedlinePlus Consumer Health Information
- MedlinePlus Health Information
Miscellaneous
- NCI CPTAC Assay Portal

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy-Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy

Affiliations

Systematic review of frequency of felt and enacted stigma in epilepsy and determining factors and attitudes toward persons living with epilepsy-Report from the International League Against Epilepsy Task Force on Stigma in Epilepsy

Authors

Affiliations

Erratum in

Abstract

References

REFERENCES

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous