Department of Psychology, Michigan State University, East Lansing, MI 48824, USA.
Patient Educ Couns. 2012 Feb;86(2):147-55. doi: 10.1016/j.pec.2011.04.016. Epub 2011 May 14.
To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).
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.
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.
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.
Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.
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。
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。
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。
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。
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。