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, Ann Jacoby, Amza Ali, Joan Austin, Gretchen L. Birbeck, Patricia Braga, J. Helen Cross, Hanneke de Boer, Tarun Dua, Paula T. Fernandes, Kirsten M. Fiest, Jonathan Goldstein, Sheryl Haut, Diane Lorenzetti, Janet Mifsud, Solomon Moshe, Karen L. Parko, Manjari Tripathi, Samuel Wiebe,...
Churl-Su Kwon, Ann Jacoby, Amza Ali, Joan Austin, Gretchen L. Birbeck, Patricia Braga, J. Helen Cross, Hanneke de Boer, Tarun Dua, Paula T. Fernandes, Kirsten M. Fiest, Jonathan Goldstein, Sheryl Haut, Diane Lorenzetti, Janet Mifsud, Solomon Moshe, Karen L. Parko, Manjari Tripathi, Samuel Wiebe, Nathalie Jette
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Agradecimentos: Churl-Su Kwon is funded by the Leon Levy Fellowship. J. Helen Cross holds the Prince of Wales's Chair of Childhood Epilepsy and is supported by the National Institute for Health Research Biomedical Research Centre at Great Ormond Street Hospital for Children NHS Foundation Trust...
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Agradecimentos: Churl-Su Kwon is funded by the Leon Levy Fellowship. J. Helen Cross holds the Prince of Wales's Chair of Childhood Epilepsy and is supported by the National Institute for Health Research Biomedical Research Centre at Great Ormond Street Hospital for Children NHS Foundation Trust and University College London. Solomon L. Moshé is the Charles Frost Chair in Neurosurgery and Neurology. Samuel Wiebe holds the Hopewell Professorship in Clinical Neuroscience from the Cumming School of Medicine at the University of Calgary. Nathalie Jetté is the holder of the Bludhorn Professor of International Medicine. Ann Jacoby is Professor Emerita at the University of Liverpool, UK. Funding for this study was provided in part by the International League Against Epilepsy. CONFLICT OF INTEREST Nathalie Jetté receives grant funding paid to her institution for grants unrelated to this work from the National Institute of Neurological Disorders and Stroke (NINDS) (National Institutes of Health (NIH) U24NS107201, NIH IU54NS100064) and the Patient-Centered Outcomes Research Institute (PCORI). She receives an honorarium for her work as an Associate Editor of Epilepsia. Gretchen Birbeck has received funds from the US NIH to conduct work on epilepsy-associated stigma. She is the curator for Neurology: Without Borders and serves as the Zambian Ambassador for the Royal Society of Tropical Medicine and Hygiene. J. Helen Cross's research is supported by the National Institute of Health Research (NIHR) Biomedical Research Centre at Great Ormond Street Hospital. She holds an endowed chair at UCL Great Ormond Street Institute of Child Health; she holds grants from NIHR, Engineering and Physical Sciences Research Council (EPSRC), Great Ormond Street Hospital (GOSH) Charity, Epilepsy Research UK (ERUK), the Waterloo Foundation, and the GOSH Biomedical Research Centre. She has acted as an investigator for studies with GW Pharma, Zogenix, Vitaflo, and Marinius, and has been a speaker and on advisory boards for GW Pharma, Zogenix, and Nutricia; all remuneration has been paid to her department. Sheryl Haut is a consultant for Nile AI. Solomon L. Moshé is funded by grants from NIH NS43209 and 1U54NS100064, CURE Infantile Spasms Initiative, US Department of Defense (W81XWH-13-1-0180), the Heffer Family and the Segal Family Foundations, and the Abbe Goldstein/Joshua Lurie and Laurie Marsh/Dan Levitz families. He also serves as an Associate Editor of Neurobiology of Disease, and is on the editorial boards of Epileptic Disorders, Brain and Development, Pediatric Neurology, and Physiological Research. He receives from Elsevier an annual compensation for his work as Associate Editor in Neurobiology of Disease and royalties from two books he co-edited. None of the other authors have any conflicts of interest to disclose. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines
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Abstract: 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...
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Abstract: 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
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DOI: https://doi.org/10.1111/epi.17135
Texto completo: https://onlinelibrary.wiley.com/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, Ann Jacoby, Amza Ali, Joan Austin, Gretchen L. Birbeck, Patricia Braga, J. Helen Cross, Hanneke de Boer, Tarun Dua, Paula T. Fernandes, Kirsten M. Fiest, Jonathan Goldstein, Sheryl Haut, Diane Lorenzetti, Janet Mifsud, Solomon Moshe, Karen L. Parko, Manjari Tripathi, Samuel Wiebe,...
Churl-Su Kwon, Ann Jacoby, Amza Ali, Joan Austin, Gretchen L. Birbeck, Patricia Braga, J. Helen Cross, Hanneke de Boer, Tarun Dua, Paula T. Fernandes, Kirsten M. Fiest, Jonathan Goldstein, Sheryl Haut, Diane Lorenzetti, Janet Mifsud, Solomon Moshe, Karen L. Parko, Manjari Tripathi, Samuel Wiebe, Nathalie Jette
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, Ann Jacoby, Amza Ali, Joan Austin, Gretchen L. Birbeck, Patricia Braga, J. Helen Cross, Hanneke de Boer, Tarun Dua, Paula T. Fernandes, Kirsten M. Fiest, Jonathan Goldstein, Sheryl Haut, Diane Lorenzetti, Janet Mifsud, Solomon Moshe, Karen L. Parko, Manjari Tripathi, Samuel Wiebe,...
Churl-Su Kwon, Ann Jacoby, Amza Ali, Joan Austin, Gretchen L. Birbeck, Patricia Braga, J. Helen Cross, Hanneke de Boer, Tarun Dua, Paula T. Fernandes, Kirsten M. Fiest, Jonathan Goldstein, Sheryl Haut, Diane Lorenzetti, Janet Mifsud, Solomon Moshe, Karen L. Parko, Manjari Tripathi, Samuel Wiebe, Nathalie Jette
Fontes
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Epilepsia v. 63, n. 3, p. 573-597, Mar. 2022 |