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.

Journal: Epilepsia

Volume: 63

Issue: 3

Year of Publication: 2022

Affiliated Institutions:  Departments of Neurosurgery, Neurology and Population Health Sciences & Policy, Icahn School of Medicine, New York, New York, USA. Department of Public Health and Policy, University of Liverpool, Liverpool, UK. Kingston Public Hospital and University of the West Indies, Kingston, Jamaica. Indiana University School of Nursing, Indianapolis, Indiana, USA. Epilepsy Division, University of Rochester, Rochester, New York, USA. Facultad de Medicina, Institute of Neurology, Universidad de la República, Montevideo, Uruguay. Developmental Neurosciences Programme, UCL-NIHR BRC Great Ormond Street Institute of Child Health, London, UK. SEIN - Epilepsy Institute in the Netherlands Foundation, Heemstede, The Netherlands. Department of Mental Health and Substance Abuse, World Health Organization, Geneva, Switzerland. Department of Sport Science, Faculty of Physical Education, UNICAMP, Campinas, Brazil. 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. Departments of Neurology and Population Health Sciences & Policy, Icahn School of Medicine, New York, New York, USA. Saul R. Korey Department of Neurology, Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, New York, USA. Department of Community Health Sciences, University of Calgary and Health Sciences Library, University of Calgary, Calgary, Alberta, Canada. Department of Clinical Pharmacology and Therapeutics, Faculty of Medicine and Surgery, University of Malta, Msida, Malta. Department of Neurology, University of California at San Francisco, San Francisco, California, USA. Department of Neurology, All India Institute of Medical Sciences, New Delhi, India. 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.

Abstract summary 

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

Authors & Co-authors:  Kwon Churl-Su CS Jacoby Ann A Ali Amza A Austin Joan J Birbeck Gretchen L GL Braga Patricia P Cross J Helen JH de Boer Hanneke H Dua Tarun T Fernandes Paula T PT Fiest Kirsten M KM Goldstein Jonathan J Haut Sheryl S Lorenzetti Diane D Mifsud Janet J Moshe Solomon S Parko Karen L KL Tripathi Manjari M Wiebe Samuel S Jette Nathalie N

Study Outcome 

Source Link: Visit source

Statistics
Citations :  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.
Authors :  20
Identifiers
Doi : 10.1111/epi.17135
SSN : 1528-1167
Study Population
Male,Female
Mesh Terms
Epilepsy
Other Terms
enacted stigma;epilepsy terminology;felt stigma;negative attitudes;negative stereotypes
Study Design
Study Approach
Country of Study
Publication Country
United States