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癫痫患者的耻辱感:定性研究的系统评价和元综合。

Stigma experienced by patients with epilepsy: A systematic review and meta-synthesis of qualitative studies.

机构信息

School of Nursing, Sun Yat-sen University, Guangzhou, China.

Department of Hematology, Union Hospital Affiliated to Tongji Medical College, Huazhong University of Science and Technology, Wuhan, China.

出版信息

Epilepsy Behav. 2021 May;118:107926. doi: 10.1016/j.yebeh.2021.107926. Epub 2021 Apr 13.

DOI:10.1016/j.yebeh.2021.107926
PMID:33862535
Abstract

BACKGROUND

Epilepsy, one of the most common and serious chronic neurological diseases, is accompanied by a series of complex psychosocial problems. A number of qualitative studies have investigated the stigma experiences among patients with epilepsy (PWE). However, the findings are different and complementary to a certain degree. We conducted a systematic review to investigate and synthesize existing qualitative research findings to fully identify stigma experienced by PWE. The aim was to develop anti-stigma interventions and reduce any adverse sequelae.

OBJECTIVE

To synthesize qualitative evidence on the stigma experiences of PWE.

METHODS

This was a systematic review and qualitative evidence synthesis guided by the Joanna Briggs Methodology. Systematic literature search for primary studies was conducted in PubMed, PsychINFO, EMBASE, and Web of Science databases until December 2019. Findings from the included qualitative studies were extracted, assessed for quality, and aggregated using meta-synthesis.

RESULTS

Twenty-six studies were included in the review. Four distinct synthesized findings were identified from the original researches: 'stigma experienced in daily life'; 'stigma perceived from others'; 'psychological reactions to stigma'; and 'strategies to address stigma'.

CONCLUSION

The present meta-synthesis thoroughly investigated the stigma experienced by PWE. The findings suggest that appropriate multi-level interventions targeting the general public, health professionals, caregivers, and patients themselves are warranted to reduce the harmful impacts of stigma.

摘要

背景

癫痫是最常见和最严重的慢性神经系统疾病之一,伴随着一系列复杂的心理社会问题。一些定性研究已经调查了癫痫患者(PWE)的污名体验。然而,这些发现存在差异,在一定程度上是互补的。我们进行了一项系统综述,以调查和综合现有的定性研究结果,以充分确定 PWE 的污名体验。目的是制定反污名干预措施,减少任何不良后果。

目的

综合 PWE 污名体验的定性证据。

方法

这是一项系统综述和定性证据综合,由 Joanna Briggs 方法学指导。对 PubMed、PsychINFO、EMBASE 和 Web of Science 数据库中的原始研究进行了系统的文献检索,直到 2019 年 12 月。从纳入的定性研究中提取发现结果,评估其质量,并使用元综合进行汇总。

结果

综述纳入了 26 项研究。从原始研究中确定了四个不同的综合发现:“日常生活中的污名体验”、“他人感知到的污名”、“对污名的心理反应”和“应对污名的策略”。

结论

本荟萃分析彻底调查了 PWE 的污名体验。研究结果表明,有必要针对普通公众、卫生专业人员、照顾者和患者本身开展适当的多层次干预措施,以减少污名的有害影响。

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