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一项关于功能性运动障碍患者的经历和感知的定性研究。

A qualitative study of the experiences and perceptions of patients with functional motor disorder.

机构信息

Sobell Department of Motor Neuroscience and Movement Disorders, UCL Institute of Neurology, London, UK.

Motor Control and Movement Disorders Group, Institute of Molecular and Clinical Sciences, St Georges University of London, London, UK.

出版信息

Disabil Rehabil. 2020 Jul;42(14):2043-2048. doi: 10.1080/09638288.2018.1550685. Epub 2019 Jan 22.

Abstract

Patients with functional motor disorder are perceived as difficult by health care professionals, but we know very little about the patients' perspective. Understanding the experiences and perceptions of patients could help to improve clinical services and patient outcomes. To explore the experiences and perspectives of patients with functional motor disorder using qualitative research methods. This qualitative study was embedded within a feasibility study of specialist physiotherapy. Eleven patients with functional motor disorder participated in semi-structured qualitative interviews prior to receiving treatment. The interview transcripts were subjected to an inductive thematic analysis. The data were arranged into six themes: (1) the burden of living with functional motor disorder; (2) nobody knew what was wrong; (3) dissatisfaction with psychological explanations; (4) patients feel abandoned; (5) iatrogenic harm; and (6) powerlessness. The study participants experienced substantial physical and emotional burdens associated with functional motor disorder. They were generally dissatisfied with psychological explanations for their symptoms and commonly felt misunderstood and abandoned by health care professionals, which appeared to leave them vulnerable to iatrogenic harm. A lack of understanding of functional motor disorder left participants feeling unable to help themselves. This research highlights a number of inadequacies within current clinical services for patients with functional motor disorder.Implications for rehabilitationCareful communication is required to help patients understand and accept the diagnosis of functional motor disorder.It is important to listen to the patient's narrative in order to help them make sense of their illness experience.A nuanced biopsychosocial explanatory model is needed to help patients understand how psychological factors can be relevant to physical symptoms and symptoms that are often perceived to be precipitated by a physical event.A lack of understanding and acceptance of the diagnosis may leave patients vulnerable to iatrogenic harm and powerless to help themselves.

摘要

患者的功能性运动障碍被医疗保健专业人员认为是困难的,但我们对患者的观点知之甚少。了解患者的经历和看法有助于改善临床服务和患者的结果。使用定性研究方法探讨功能性运动障碍患者的经历和观点。这项定性研究嵌入在专门的物理治疗可行性研究中。在接受治疗之前,11 名功能性运动障碍患者参加了半结构化的定性访谈。对访谈记录进行了归纳主题分析。这些数据被整理成六个主题:(1)患有功能性运动障碍的生活负担;(2)没有人知道哪里出了问题;(3)对心理解释不满;(4)患者感到被抛弃;(5)医源性伤害;(6)无能为力。研究参与者经历了与功能性运动障碍相关的身体和情感上的巨大负担。他们普遍对心理解释他们的症状不满意,经常感到被医疗保健专业人员误解和抛弃,这似乎使他们容易受到医源性伤害。对功能性运动障碍缺乏了解,使患者感到无法自救。这项研究突出了目前对功能性运动障碍患者临床服务的一些不足。康复的意义需要进行仔细的沟通,以帮助患者理解和接受功能性运动障碍的诊断。倾听患者的叙述以帮助他们理解自己的疾病经历是很重要的。需要一个细致的生物心理社会解释模型来帮助患者理解心理因素如何与身体症状相关,以及那些通常被认为是由身体事件引发的症状。对诊断的缺乏理解和接受可能使患者容易受到医源性伤害,并使他们无法自救。

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