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首页> 外文期刊>Journal of Nursing Education and Practice >The structure of the “lived-experience”: analysis of reports from women with systemic lupus erythematosus
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The structure of the “lived-experience”: analysis of reports from women with systemic lupus erythematosus

机译：“生活经历”的结构：系统性红斑狼疮妇女的报告分析

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Objective: To investigate how systemic lupus erythematosus (SLE) has changed the lives of affected women and their reports on how this condition has affected them. Method: Interviews were performed in accordance with the qualitative study method of Amatuzzi and the answers were recorded. Results: Patients have reported that it is difficult to deal with this disease, their lives have changed, in particular their body image, as a result of treatment side effects. The lack of familiarity of other people with the disease brings several consequences such as discrimination, difficulties in obtaining a job and changes in their interpersonal relationships. Treatment compliance is often maintained due to the fear related to the unpredictable disease course. The imminence of a possible lupus flare can cause anxiety and fear, imposing limits to their lives. Since the disease has no regular course, it is perceived as a threat to their existence and, consequently, they feel persecuted by a death threat. Conclusions: Psychological manifestations related to the disease based on patients’ reports are discussed, together with the importance of multi-professional assistance, highlighting the role of the mental health professional as an essential tool to reach an overall understanding and adequate treatment for patients with SLE.
机译：目的：调查系统性红斑狼疮（SLE）如何改变了受影响妇女的生活，并报道了这种情况如何影响了她们。方法：按照Amatuzzi的定性研究方法进行访谈，并记录答案。结果：患者报告称，由于治疗副作用，这种疾病难以应对，他们的生活发生了变化，尤其是他们的身体形象。其他人对这种疾病的不了解会带来一些后果，例如歧视，工作困难和人际关系的改变。由于对不可预测的疾病进程的担心，经常保持治疗依从性。可能发生的狼疮爆发会引起焦虑和恐惧，从而限制了他们的生活。由于该疾病没有规律的病程，因此被视为对其生存的威胁，因此，他们受到死亡威胁的迫害。结论：讨论了基于患者报告的与疾病相关的心理表现，以及多专业协助的重要性，强调了精神卫生专业人员作为获得SLE患者全面了解和适当治疗的重要工具的作用。

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