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肌痛性脑脊髓炎/慢性疲劳综合征的定性研究综述和元分析。

A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome.

机构信息

Department of Psychology, Michigan State University, East Lansing, MI 48824, USA.

出版信息

Patient Educ Couns. 2012 Feb;86(2):147-55. doi: 10.1016/j.pec.2011.04.016. Epub 2011 May 14.

Abstract

OBJECTIVE

To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).

METHODS

Articles were systematically reviewed and analyzed within a meta-analytic framework. Analyses included a multi-perspective examination of ME/CFS, as well as a comparative analysis of ME/CFS versus other chronic conditions.

RESULTS

Thirty-four qualitative studies on ME/CFS were included. Findings include three substantive thematic areas that focus on: (1) experiences of people with ME/CFS, (2) experiences of physicians, and (3) themes that intersect both of these groups. For patients, illness development influenced identity, reductions in functioning, and coping. Physician-specific themes described lack of awareness about ME/CFS and recommended improvement in educational resources. Intersecting themes expressed issues with diagnosis creating tensions and fueling the stigmatization of ME/CFS.

CONCLUSIONS

Findings indicate multilayered, context-specific experiences and ways in which both people with ME/CFS, as well as those involved in their lives (e.g., family or the medical community), interpret this illness. Future qualitative studies should recognize the various facets of the ME/CFS experience, the network members of people with ME/CFS, and the sociocultural environment through which the illness is understood.

PRACTICE IMPLICATIONS

Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.

摘要

目的

综述和综合分析肌痛性脑脊髓炎/慢性疲劳综合征(ME/CFS)的定性研究结果。

方法

在荟萃分析框架内对文章进行系统回顾和分析。分析包括对 ME/CFS 的多视角检查,以及对 ME/CFS 与其他慢性疾病的比较分析。

结果

纳入了 34 项关于 ME/CFS 的定性研究。研究结果包括三个实质性主题领域,重点关注:(1)ME/CFS 患者的体验,(2)医生的体验,以及(3)这两个群体相交的主题。对于患者而言,疾病发展影响了身份认同、功能下降和应对方式。针对医生的主题描述了对 ME/CFS 的认识不足,并建议改进教育资源。相交的主题表达了诊断问题导致的紧张关系,并加剧了 ME/CFS 的污名化。

结论

研究结果表明,ME/CFS 患者及其生活中的相关人员(如家人或医疗社区)存在多层次、特定于情境的体验和理解方式。未来的定性研究应通过患者的生活网络成员,以及通过社会文化环境来认识这种疾病,认识到 ME/CFS 体验的各个方面。

实践意义

医疗保健专业人员可以从患者的经历中获得独特的见解,从而更准确地进行诊断和治疗建议。

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