Discipline, Palliative and Supportive Services, Flinders University, GPO Box 2100, Adelaide, SA, 5001, Australia.
IMPACCT, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, 2007, Australia.
BMC Palliat Care. 2020 May 6;19(1):64. doi: 10.1186/s12904-020-00572-7.
Chronic breathlessness is a recognized clinical syndrome that severely impacts patients and carers, who become increasingly restricted in their daily activities. Often, patients become reliant on their carers, who are required to provide constant support. Although individual experiences of breathlessness have been previously investigated, there are few studies exploring contemporaneous experiences of breathlessness of the patient and their carer. This study aimed to understand the experience of severe chronic breathlessness in people with chronic obstructive pulmonary disease (COPD) from the perspective of the patient and carer unit.
A qualitative study embedded in a randomised, placebo-controlled effectiveness study (RCT) of regular, low-dose (≤32 mg/day), sustained-release morphine for chronic breathlessness associated with COPD. Recruitment occurred between July 2017 and November 2018 in one respiratory and palliative care services, in South Australia. Participants were community-dwelling patients with COPD and severe breathlessness (modified Medical Research Council scale 3 or 4) and their carers. Separate semi-structured interviews were conducted with patients and carers, recorded and transcribed verbatim. Analysis was informed by grounded theory using a constant comparative approach.
From the 26 patients with a carer recruited for the RCT in South Australia, nine were interviewed in their homes. Six patients were men, median age 77 years. Carers were mostly women, who were their wives (n = 6), median age 70. Five themes emerged from the data: (1) shrinking world; (2) mutual adaptation; (3) co-management; (4) emotional coping; and (5) meaning in the face of death.
Chronic breathlessness is a systemic condition that permeates all aspects of the patient's and carer's lives. Working as a team, patients and carers manage chronic breathlessness to achieve maximal function and well-being. Patients and carers share many aspects of the experience of breathlessness, but the carer seems particularly susceptible to emotional distress. Future chronic breathlessness interventions should target the patient and the carer, both together and separately to address their common and individual needs.
The main trial is registered (registration no. NCT02720822; posted March 28, 2016).
慢性呼吸困难是一种公认的临床综合征，严重影响患者及其照护者，使他们在日常生活中受到越来越多的限制。患者通常依赖照护者，而照护者需要提供持续的支持。尽管之前已经研究了个体呼吸困难的经历，但很少有研究探讨患者及其照护者同时经历的呼吸困难。本研究旨在从患者和照护者单元的角度了解慢性阻塞性肺疾病（COPD）患者严重慢性呼吸困难的体验。
一项定性研究嵌入了一项随机、安慰剂对照的有效性研究（RCT），研究对象是患有 COPD 且伴有慢性呼吸困难的患者，给予常规、低剂量（≤32mg/天）、持续释放吗啡治疗。招募工作于 2017 年 7 月至 2018 年 11 月在南澳大利亚的一家呼吸和姑息治疗服务机构进行。参与者为居住在社区的 COPD 患者，呼吸困难严重（改良医学研究理事会量表 3 或 4 级），并伴有其照护者。对患者和照护者进行了单独的半结构化访谈，记录并逐字转录。分析是基于扎根理论，采用恒定性比较方法进行的。
在南澳大利亚招募的 26 名有照护者的 RCT 患者中，有 9 名在家中接受了访谈。6 名患者为男性，中位年龄为 77 岁。照护者大多为女性，是他们的妻子（n=6），中位年龄为 70 岁。数据中出现了 5 个主题：（1）缩小的世界；（2）相互适应；（3）共同管理；（4）情绪应对；（5）面对死亡的意义。
慢性呼吸困难是一种系统性疾病，渗透到患者及其照护者生活的各个方面。患者和照护者作为一个团队，共同管理慢性呼吸困难，以实现最大的功能和幸福感。患者和照护者共享呼吸困难体验的许多方面，但照护者似乎特别容易受到情绪困扰。未来的慢性呼吸困难干预措施应同时针对患者和照护者，兼顾他们的共同和个体需求。
主要试验已注册（注册号 NCT02720822；于 2016 年 3 月 28 日注册）。
