Stigma reduction interventions for epilepsy: A systematized literature review

Payal Chakraborty; Nadine A Sanchez; Mark Kaddumukasa; Mayanja Kajumba; Angelina Kakooza-Mwesige; Megan Van Noord; Martin N Kaddumukasa; Noeline Nakasujja; Michael M Haglund; Deborah C Koltai

doi:10.1016/j.yebeh.2020.107381

Stigma reduction interventions for epilepsy: A systematized literature review

Epilepsy Behav. 2021 Jan;114(Pt B):107381. doi: 10.1016/j.yebeh.2020.107381. Epub 2020 Aug 31.

Affiliations

¹ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke Global Health Institute, 310 Trent Dr, Durham, NC 27710, USA; Duke University School of Medicine, Department of Psychiatry and Behavioral Sciences, Durham, NC, USA.
² Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke Global Health Institute, 310 Trent Dr, Durham, NC 27710, USA.
³ College of Health Sciences, Makerere University, Kampala, Uganda.
⁴ Department of Mental Health and Community Psychology, Makerere University School of Psychology, P.O. Box 7062, Kampala, Uganda.
⁵ Department of Paediatrics and Child Health, Makerere University College of Health Sciences, Mulago Hill Road, P.O.Box 7072, Kampala, Uganda; Department of Paediatrics and Child Health, Mulago National Referral Hospital, Pediatric Neurology Unit, Kampala, Uganda.
⁶ Duke University Medical Center Library, Duke University School of Medicine, Durham, NC, USA.
⁷ College of Health Sciences, Makerere University, Kampala, Uganda; Department of Medicine, Mulago National Referral Hospital, Neurology Unit, Kampala, Uganda.
⁸ Department of Psychiatry, School of Medicine, Makerere University College of Health Sciences, P.O. Box 7072, Kampala, Uganda.
⁹ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke University School of Medicine, Department of Psychiatry and Behavioral Sciences, Durham, NC, USA; Duke University School of Medicine, Durham, NC, USA.
¹⁰ Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Box 3807 Duke University Medical Center, Durham, NC 27705, USA; Duke University School of Medicine, Department of Psychiatry and Behavioral Sciences, Durham, NC, USA; Department of Neurology, Duke University School of Medicine, Durham, NC, USA. Electronic address: koltai@duke.edu.

PMID: 32883610
DOI: 10.1016/j.yebeh.2020.107381

Abstract

Objective: Epilepsy is a disease that is stigmatized globally. Several studies have introduced sensitization efforts to reduce stigma towards people with epilepsy (PWE) in various settings. Although sensitization efforts have shown some evidence of improved attitudes towards epilepsy, progress has been limited. This systematized literature review summarizes the existing literature concerning interventions that reduce stigma towards PWE. By conducting an overview of existing interventions, we aimed to consolidate knowledge and outcomes of existing efforts as well as highlight gaps and directions for future interventions.

Methods: We searched MEDLINE (via PubMed) and Embase for English-language studies published between January 1, 1970 and November 15, 2017 that focused on stigma reduction strategies for PWE in any global setting. Studies were included if they described a stigma reduction intervention for epilepsy. Studies were excluded if they were reviews, editorials, conference proceedings, abstracts, or did not discuss a stigma reduction intervention. We thematically grouped studies based on type(s) of intervention(s) addressed and summarized interventions, outcome measures, and results for each study included in the review.

Results: Of the 1975 initial citations, 32 studies met our inclusion criteria. Interventions clustered into four broad categories including public awareness interventions, policy-based interventions, school-based interventions, and interventions that targeted PWE themselves as well as their caregivers and peers. Efficacy of these interventions as reported by the authors was mixed. Many studies did not use validated outcome measures to assess stigma.

Conclusions: Although intervention efforts have been made towards epilepsy stigma reduction at many levels, stigma towards and discrimination against PWE prevail worldwide. About 75% of the studies included in this review were conducted in high-income countries (HICs) despite the disproportional need in low- and middle-income countries (LMICs). Furthermore, robust outcome measures to assess efficacy in stigma reduction for interventions are lacking, calling into question the validity of reported outcomes for both positive and null findings. Therefore, more work is needed in both developing effective stigma reduction strategies, especially in LMICs, and validating tools to measure their efficacy. This article is part of the Special Issue "The Intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".

Keywords: Epilepsy; Global health; Intervention; Neurological diseases; Stigma.

Publication types

Review

MeSH terms

Attitude
Epilepsy* / therapy
Humans
Poverty
Social Stigma*
Uganda