Department of Research and Health Technology Assessment, Odense University Hospital, Odense, Denmark.
Centre for Innovative Medical Technology (CIMT), Odense University Hospital, Odense, Denmark.
Qual Health Res. 2020 Nov;30(13):2132-2145. doi: 10.1177/1049732320938165. Epub 2020 Jul 16.
Patients with very severe chronic obstructive pulmonary disease (COPD) conduct their everyday lives under shortness of breath. The aim of this study was to explore telemediated exercise training to patients at home, with the conduct of everyday life as a theoretical framework. Based on ethnographic fieldwork involving a hospital, two municipalities, and homes of 11 patients from 2013 to 2017, this article shows how telemediated training became part of patients' and partners' everyday lives and the prioritization of time and resources for basic activities. Most of the patients found telemediated training meaningful, that it can work as an agent of hope in holding on to essential everyday life activities, but also that it may be experienced as burdensome and disciplining. The physiotherapists' understanding of the patients' circumstances and needs for rehabilitation changed. The article argues that telemediated training should be offered as part of a palliative approach for those severely affected by COPD.
患有非常严重慢性阻塞性肺疾病（COPD）的患者在日常生活中会感到呼吸困难。本研究旨在探索远程介导的运动训练在家中的患者，以日常生活为理论框架。基于 2013 年至 2017 年间在一家医院、两个直辖市和 11 名患者家中进行的民族志实地考察，本文展示了远程介导的培训如何成为患者和伴侣日常生活的一部分，以及为基本活动分配时间和资源的优先级。大多数患者认为远程介导的培训有意义，它可以作为坚持基本日常生活活动的希望的代理，但也可能被视为负担和纪律。物理治疗师对患者的情况和康复需求的理解发生了变化。本文认为，对于那些受 COPD 严重影响的人来说，远程介导的培训应该作为姑息治疗的一部分提供。
