Severance Children's Hospital, Yonsei University, Seoul, Republic of Korea; College of Nursing, Yonsei University, Seoul, Republic of Korea.
Mo-Im Kim Nursing Research Institute, College of Nursing, Yonsei University, Seoul, Republic of Korea.
Epilepsy Behav. 2020 Mar;104(Pt A):106908. doi: 10.1016/j.yebeh.2020.106908. Epub 2020 Jan 27.
Stigma is a critical issue among people with epilepsy (PWE). There is a need to undertake an integrative review of the factors associated with stigma, as it is experienced subjectively, and cannot be fully understood through quantitative research alone. The aims of this study were to explore the factors influencing epilepsy-associated stigma and to extend our understanding of stigma using an integrative review approach.
Three databases (i.e., CINAHL, PubMed, and PsycINFO) were searched for articles published from January 2010 through December 2018 on stigma among PWE. Selected articles were assessed for quality using the mixed-method appraisal tool. The matrix method was used for data extraction and analysis. Overall, the process of the review was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist.
Overall, 26 studies were included in this review: four qualitative studies, twenty-one quantitative studies, and one mixed-method study. Several factors associated with stigma were found, divided into four categories across two main aspects: individual (i.e., disease and social characteristics) and community (i.e., overall impression/beliefs regarding epilepsy and social networks) based on the Framework Integrating Normative Influences on Stigma.
The impression of and beliefs about epilepsy among the general population as well as among PWE were the primary factors affecting stigma. Thus, there is a need for the provision of accurate information about epilepsy to both these groups. Additional studies on epilepsy-associated stigma employing various methodological approaches are required.
癫痫患者(PWE)存在严重的耻辱感问题。有必要对与耻辱感相关的因素进行综合回顾,因为耻辱感是一种主观体验,仅通过定量研究无法全面理解。本研究旨在探讨影响癫痫相关耻辱感的因素,并通过综合回顾方法扩展对耻辱感的理解。
从 2010 年 1 月至 2018 年 12 月,在 CINAHL、PubMed 和 PsycINFO 三个数据库中搜索有关 PWE 耻辱感的文章。使用混合方法评估工具评估选定文章的质量。使用矩阵法进行数据提取和分析。总体而言,审查过程遵循系统评价和荟萃分析的首选报告项目(PRISMA)清单。
共有 26 项研究纳入本综述:4 项定性研究、21 项定量研究和 1 项混合方法研究。发现了与耻辱感相关的几个因素,可分为四大类,涉及两个主要方面:个体(即疾病和社会特征)和社区(即对癫痫的整体印象/信念和社交网络),这是基于框架整合耻辱感的规范性影响。
一般人群和 PWE 对癫痫的印象和信念是影响耻辱感的主要因素。因此,需要向这两个群体提供有关癫痫的准确信息。需要采用各种方法学方法对癫痫相关耻辱感进行进一步研究。