Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany.
Institute of Nursing Science, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany.
Ann Palliat Med. 2022 Jul;11(7):2225-2234. doi: 10.21037/apm-21-3361. Epub 2022 Mar 16.
Episodic breathlessness is a common form of chronic breathlessness that is highly distressing for patients with diseases such as chronic obstructive pulmonary disease (COPD) and lung cancer in advanced stages. Little is known about the experiences of informal caregivers who care for patients with episodic breathlessness. The present study aims to explore and describe the experiences and coping strategies of informal caregivers who deal with this challenging condition.
This is a qualitative study based on semi-structured in-depth interviews with informal caregivers of patients suffering from episodic breathlessness. The interviews were recorded, transcribed verbatim, and analyzed using Mayring's qualitative content analysis.
Thirteen informal caregivers were interviewed. The results suggest that the distress patients often experience during episodic breathlessness causes concern and anxiety among most informal caregivers. Particularly stressful for them is their own helplessness and uncertainty, especially when episodic breathlessness occurs for the first time. Over time, all informal caregivers interviewed had developed strategies to cope with the patients' episodic breathlessness. These strategies can be divided into two categories: (I) strategies directed at the patient to provide appropriate support during episodic breathlessness, and (II) strategies aimed at coping with the caregiver's own emotional burden. Despite these strategies, the need for professional support for informal caregivers often remains unmet, especially during the initial onset of episodic breathlessness.
Informal caregivers of patients with chronic breathlessness need support and advice on how to better cope with episodic breathlessness. Both patient and caregiver support need to be part of a comprehensive approach, e.g., as part of a breathlessness service.
发作性呼吸困难是一种常见的慢性呼吸困难形式，对患有慢性阻塞性肺疾病（COPD）和晚期肺癌等疾病的患者来说非常痛苦。对于照顾发作性呼吸困难患者的非专业护理人员的经历知之甚少。本研究旨在探讨和描述应对这种具有挑战性情况的非专业护理人员的经历和应对策略。
这是一项基于半结构式深入访谈的定性研究，访谈对象是非专业护理人员，他们照顾患有发作性呼吸困难的患者。访谈进行了录音、逐字记录，并使用 Mayring 的定性内容分析法进行分析。
共对 13 名非专业护理人员进行了访谈。结果表明，患者在发作性呼吸困难期间经常经历的困扰会引起大多数非专业护理人员的关注和焦虑。对他们来说，最具压力的是他们自己的无助和不确定性，尤其是在发作性呼吸困难首次发生时。随着时间的推移，所有接受访谈的非专业护理人员都制定了应对患者发作性呼吸困难的策略。这些策略可分为两类：（I）针对患者的策略，即在发作性呼吸困难期间提供适当的支持，以及（II）针对护理人员自身情绪负担的策略。尽管采取了这些策略，但非专业护理人员通常仍需要专业支持，特别是在发作性呼吸困难开始时。
慢性呼吸困难患者的非专业护理人员需要支持和建议，以更好地应对发作性呼吸困难。患者和护理人员的支持都需要成为综合方法的一部分，例如作为呼吸困难服务的一部分。
