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首页> 外文期刊>Musculoskeletal care. >Uncertainty and Opportunities in Patients with Established Systemic Lupus Erythematosus: A Qualitative Study
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Uncertainty and Opportunities in Patients with Established Systemic Lupus Erythematosus: A Qualitative Study

机译：建立性系统性红斑狼疮患者的不确定性和机会：定性研究

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Systemic lupus erythematosus (SLE) is a chronic disease which can affect any organ, and the impact of the condition will affect each person differently. There are few qualitative studies including the experiences of both women and men with a diagnosis of SLE corresponding to the American College of Rheumatology (ACR) criteria where both negative and positive impacts of the disease have been presented. Purpose: The aim was to describe how patients with established SLE experience their illness in everyday life, including both negative and positive aspects. Method: Four focus group interviews were conducted with 16 women and three men with SLE according to ACR criteria, with varied disease activity and no or little organ damage. The interviews were tape recorded, transcribed verbatim and analysed using qualitative content analysis. Results: Two themes emerged: multifaceted uncertainty contained the categories 'an unreliable body', 'obtrusive pain and incomprehensible fatigue', 'mood changes and worries', 'reliance on medication and health care'; Focus on health and opportunities included 'learning process implying personal strength', 'limitations and possibilities in activities and work', 'a challenge to explain and receive support' and 'living an ordinary life incorporating meaningful occupations'. Conclusions: While we expected to find a mainly negative impact, positive aspects were also described. Our findings were complex and showed that patients with established SLE can experience both uncertainty and opportunities. This highlights the importance for healthcare professionals of gaining a better understanding of patients' uncertainty, to enable them to support patients, allowing them to focus on health and opportunities. Measurement instruments that capture different aspects of uncertainty and opportunities needs to be developed.
机译：系统性红斑狼疮（SLE）是一种慢性疾病，可以影响任何器官，而且这种疾病的影响将对每个人产生不同的影响。很少有定性研究，包括根据美国风湿病学会（ACR）标准诊断出SLE的男性和女性的经验，在该研究中，该疾病的负面影响和正面影响均已出现。目的：目的是描述已建立SLE的患者在日常生活中如何经历疾病，包括消极和积极方面。方法：根据ACR标准，对16名女性和3名SLE男性进行了4次焦点小组访谈，病情活动多样，器官损害几乎没有。对访谈进行录音，逐字记录，并使用定性内容分析法进行分析。结果：出现了两个主题：多方面的不确定性包括“不可靠的身体”，“剧烈的疼痛和难以理解的疲劳”，“情绪变化和担忧”，“对药物和医疗保健的依赖”;关注健康和机会包括“暗示个人力量的学习过程”，“活动和工作中的局限性和可能性”，“解释和获得支持的挑战”以及“生活在有意义的职业中”。结论：虽然我们期望发现主要是负面影响，但也描述了积极方面。我们的发现很复杂，表明已建立SLE的患者可能会遇到不确定性和机会。这凸显了对于医疗保健专业人员来说，更好地了解患者不确定性，使他们能够支持患者，使他们专注于健康和机会的重要性。需要开发捕获不确定性和机遇的不同方面的度量工具。

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