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Couples' experiences of interacting with outside others in chronic fatigue syndrome: A qualitative study

机译：夫妻在慢性疲劳综合症中与外界互动的经历：定性研究

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Objectives: Social isolation and stigma are frequently reported by patients with chronic fatigue syndrome/myalgic encephalomyelitis and relationships in the home environment with those close to the patients (their 'significant others') may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of 'significant others' themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and 'significant others' in relation to chronic fatigue syndrome/myalgic encephalomyelitis. Methods: In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation were conducted with two patients with chronic fatigue syndrome/myalgic encephalomyelitis and their spouses. Interpretative Phenomenological Analysis was used to analyse interview data. Results: Experiences of social interactions in relation to chronic fatigue syndrome/myalgic encephalomyelitis with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world. Conclusions: It is evident that significant others play an important role in the lived experience of chronic fatigue syndrome/myalgic encephalomyelitis. For both patients and significant others, the wider social world and interactions with outside others may be important influences on yadic coping in chronic fatigue syndrome/myalgic encephalomyelitis. Both future research and treatment interventions could usefully include a 'significant other' perspective. © The Author(s) 2013.
机译：目的：慢性疲劳综合症/肌病性脑脊髓炎患者经常报告社交孤立和污名化，因此在家庭环境中与亲近患者（他们的“重要他人”）的关系可能尤其重要。在这种情况下，很少有人关注“重要他人”本身的信念和经验。这项研究试图深入探讨患者和“重要他人”在慢性疲劳综合征/肌病性脑脊髓炎方面的信念和经验。方法：对两名患有慢性疲劳综合征/肌无力性脑脊髓炎的患者及其配偶进行了采用半结构式访谈时间表的深度访谈，该时间表是根据常识自我调节模型的核心结构设计的。解释现象学分析用于分析访谈数据。结果：与所有慢性病患者相比，与慢性疲劳综合征/肌性脑脊髓炎相关的社交互动经验成为所有参与者在思考自己的病情经历时的关键问题。这些担忧有两个主题：与医疗保健专业人员的互动以及与社会世界的互动。结论：很明显，其他重要因素在慢性疲劳综合征/肌源性脑脊髓炎的生活经验中起着重要作用。对于患者和重要他人而言，更广泛的社会世界以及与外界的互动可能对慢性疲劳综合征/肌病性脑脊髓炎的应对有重要影响。未来的研究和治疗干预措施都可以有效地包含“重大意义”的观点。 ©作者2013。

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