Mengshoel Anne Marit, Sim Julius, Ahlsen Birgitte, Madden Sue
1 Institute of Health and Society, Medical Faculty, University of Oslo, Oslo, Norway.
2 Institute for Primary Care and Health Sciences, Keele University, Keele, Newcastle, UK.
Chronic Illn. 2018 Sep;14(3):194-211. doi: 10.1177/1742395317718035. Epub 2017 Aug 1.
Objective To examine how individuals experience the process and consequences of receiving a diagnosis of fibromyalgia syndrome. Methods A systematic literature search of qualitative studies up to May 2016 was performed. Twenty-eight reports including information on patients' diagnostic experiences were subjected to an interpretive analysis in accordance with the principles of meta-ethnography. Results Years were normally spent consulting specialists in an attempt to confirm the reality of symptoms and make sense of the illness. Great relief was felt at finally achieving the fibromyalgia syndrome diagnosis. However, relief waned when therapies proved ineffective. Health professionals and others questioned whether individuals were genuinely ill, that the illness had a psychological nature, and whether they were doing their best to recover. The diagnosis did not provide a meaningful explanation of individuals' suffering and had limited power to legitimate illness. Patients felt blamed for their failure to recover, threatening their personal credibility and moral identity. Conclusion The fibromyalgia syndrome diagnosis has limitations in validating and making sense of patients' illness experiences and in providing social legitimation of their illness. Social relationships are strained during the diagnostic process and in the course of ineffective therapies.
目的 探讨个体如何体验纤维肌痛综合征的诊断过程及后果。方法 对截至2016年5月的定性研究进行系统的文献检索。根据元民族志原则，对28份包含患者诊断经历信息的报告进行解释性分析。结果 患者通常花费数年时间咨询专家，试图确认症状的真实性并理解病情。最终确诊纤维肌痛综合征时，患者如释重负。然而，当治疗证明无效时，这种宽慰感逐渐消退。卫生专业人员和其他人质疑患者是否真的患病、该病是否具有心理性质以及他们是否尽了最大努力康复。该诊断并未对个体的痛苦做出有意义的解释，且在使疾病合法化方面作用有限。患者因未能康复而感到自责，这威胁到他们的个人信誉和道德认同。结论 纤维肌痛综合征的诊断在验证和理解患者的疾病经历以及为其疾病提供社会合法性方面存在局限性。在诊断过程和无效治疗过程中，社会关系会紧张。
