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.
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.
Epilepsy Behav. 2021 Jan;114(Pt B):107381. doi: 10.1016/j.yebeh.2020.107381. Epub 2020 Aug 31.
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.
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.
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.
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".
癫痫是一种在全球范围内被污名化的疾病。许多研究已经在各种环境中引入了敏感性措施，以减少人们对癫痫患者（PWE）的污名化。尽管敏感性措施已经显示出一些改善对癫痫态度的证据，但进展有限。本系统文献综述总结了现有的关于减少 PWE 污名化的干预措施的文献。通过对现有干预措施进行综述，我们旨在整合现有工作的知识和成果，突出未来干预措施的差距和方向。
我们在 MEDLINE（通过 PubMed）和 Embase 中搜索了 1970 年 1 月 1 日至 2017 年 11 月 15 日发表的英语研究，这些研究集中在任何全球环境下针对 PWE 的减少污名化策略。如果研究描述了癫痫减少污名化的干预措施，则将其纳入研究。如果研究是评论、社论、会议记录、摘要或未讨论减少污名化的干预措施，则将其排除在外。我们根据所解决的干预措施的类型对研究进行了主题分组，并对纳入综述的每一项研究的干预措施、结果测量和结果进行了总结。
在最初的 1975 项引文中，有 32 项符合我们的纳入标准。干预措施分为四大类，包括公众意识干预、政策干预、学校干预以及针对 PWE 及其照顾者和同伴的干预。作者报告的这些干预措施的效果好坏参半。许多研究没有使用经过验证的结果测量来评估污名化。
尽管在许多层面上都针对癫痫污名化减少做出了干预努力，但世界各地对 PWE 的污名化和歧视仍然存在。尽管在低收入和中等收入国家（LMICs）的需求不成比例，但本综述中约 75%的研究是在高收入国家（HICs）进行的。此外，缺乏用于评估干预措施减少污名化效果的可靠结果测量方法，这使得报告的阳性和阴性结果的有效性受到质疑。因此，在发展有效的污名化减少策略方面，特别是在 LMICs 中，以及验证衡量其效果的工具方面，还需要做更多的工作。本文是“文化、资源和疾病的交集：乌干达的癫痫护理”特刊的一部分。
