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一项关于癫痫患儿和青少年污名的系统评价方案。

A systematic review protocol of stigma among children and adolescents with epilepsy.

机构信息

Mbarara University of Science and Technology (MUST), P.O. Box 1410, Mbarara, Uganda.

Makerere University, Kampala, Uganda.

出版信息

Syst Rev. 2019 Jan 12;8(1):21. doi: 10.1186/s13643-019-0940-9.

DOI:10.1186/s13643-019-0940-9
PMID:30636635
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6330482/
Abstract

BACKGROUND

Epilepsy is a neurological condition that is highly prevalent among children and adolescents with 80% of the victims living in low- and middle-income countries (LMIC). Epilepsy is associated with high levels of both perceived and enacted stigma, which vary geographically and greatly affects the victims' quality of life and self-esteem. High rates of stigma are also a significant barrier to accessing medical care. Perceived and enacted epilepsy-related stigma is associated with various sociodemographic and clinical factors, which vary from place to place. Therefore, this review will determine the prevalence of stigma of epilepsy among children and adolescents and the associated factors worldwide.

METHODS

We will search for literature in PubMed, EMBASE, PsycINFO, and CINAHL databases as well as grey literature. We will also search via Google Scholar to capture relevant literature that may not be in the searched databases. We will then screen reference lists of included studies for more studies. Studies that have documented the prevalence of epilepsy-related perceived or enacted stigma and the associated factors will be eligible for inclusion. Data will be extracted in duplicates using a pre-piloted tool consisting of study and participant characteristics as well as pre-determined factors associated with epilepsy. Heterogeneity will be assessed by a forest plot and quantified by I statistic, and in case it is high, results will be reported as a narrative and it will further be explored by subgroup analysis. In case of homogeneity, meta-analysis will be done. Bias will be assessed using a critical appraisal tool developed for prevalence studies. The strength of evidence among the studies will be assessed using the GRADE approach.

DISCUSSION

Findings from this review will document the burden of stigma of epilepsy and the common contributing factors, which will form the building blocks of interventions that address this health challenge.

SYSTEMATIC REVIEW REGISTRATION

PROSPERO CRD42017058957.

摘要

背景

癫痫是一种在儿童和青少年中发病率很高的神经系统疾病,其中 80%的患者生活在中低收入国家(LMIC)。癫痫与感知和实施的污名密切相关,这种污名在地理上存在差异,极大地影响了患者的生活质量和自尊心。高污名率也是获得医疗服务的一个重大障碍。感知和实施的与癫痫相关的污名与各种社会人口学和临床因素有关,这些因素因地点而异。因此,本综述将确定全球儿童和青少年癫痫污名的流行率及其相关因素。

方法

我们将在 PubMed、EMBASE、PsycINFO 和 CINAHL 数据库以及灰色文献中搜索文献。我们还将通过 Google Scholar 进行搜索,以获取可能不在已搜索数据库中的相关文献。然后,我们将筛选纳入研究的参考文献列表,以获取更多研究。记录癫痫相关感知或实施污名及其相关因素流行率的研究将符合纳入标准。使用预试验工具对数据进行重复提取,该工具包括研究和参与者特征以及与癫痫相关的预先确定的因素。通过森林图评估异质性,并通过 I 统计量进行量化,如果异质性高,则将结果以叙述形式报告,并通过亚组分析进一步探讨。如果同质性高,则进行荟萃分析。使用为流行率研究制定的批判性评价工具评估偏倚。使用 GRADE 方法评估研究之间证据的强度。

讨论

本综述的结果将记录癫痫污名的负担和常见的促成因素,这将为解决这一健康挑战的干预措施奠定基础。

系统评价注册

PROSPERO CRD42017058957。

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本文引用的文献

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Psychosocial aspects of epilepsy: a wider approach.癫痫的社会心理层面:一种更广泛的视角。
BJPsych Open. 2016 Aug 17;2(4):270-274. doi: 10.1192/bjpo.bp.115.002345. eCollection 2016 Jul.
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Health care utilization and outpatient, out-of-pocket costs for active convulsive epilepsy in rural northeastern South Africa: a cross-sectional Survey.南非东北部农村地区活动性惊厥性癫痫的医疗保健利用情况及门诊自付费用:一项横断面调查
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Prevalence and Factors Associated with Perceived Stigma among Patients with Epilepsy in Ethiopia.埃塞俄比亚癫痫患者中感知耻辱感的患病率及相关因素
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Improving understanding, promoting social inclusion, and fostering empowerment related to epilepsy: Epilepsy Foundation public awareness campaigns--2001 through 2013.增进对癫痫的理解、促进社会包容并培养与癫痫相关的赋权意识:癫痫基金会2001年至2013年的公众意识宣传活动
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The development of a critical appraisal tool for use in systematic reviews addressing questions of prevalence.用于系统评价中评估患病率问题的批判性评价工具的开发。
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Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period.在两年时间内考察新诊断癫痫儿童及其照料者所感受到的耻辱感。
Epilepsy Behav. 2014 Oct;39:38-41. doi: 10.1016/j.yebeh.2014.08.004. Epub 2014 Aug 28.
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A model for internalized stigma in children and adolescents with epilepsy.癫痫儿童和青少年内化耻辱感的模型。
Epilepsy Behav. 2014 Jul;36:74-9. doi: 10.1016/j.yebeh.2014.04.020. Epub 2014 May 24.
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ILAE official report: a practical clinical definition of epilepsy.ILAE 官方报告:癫痫的实用临床定义。
Epilepsia. 2014 Apr;55(4):475-82. doi: 10.1111/epi.12550. Epub 2014 Apr 14.
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Epilepsy and its effects on children and families in rural Uganda.癫痫及其对乌干达农村地区儿童和家庭的影响。
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