Kan Yinshi, Xiao Yao, Li Zhaoyu, Zhang Shan, Zhang Xiaotian, Wang Xiaodong, Huang Dandan, Wang Minghui, Gao Li, Gao Shuang, Lu Guijun, Zhang Xinyan, Yue Peng
School of Nursing, Capital Medical University, Beijing, China.
Department of Nursing, Peking University Third Hospital, Beijing, China.
JAMA Netw Open. 2025 Sep 2;8(9):e2531176. doi: 10.1001/jamanetworkopen.2025.31176.
The efficacy of home end-of-life care in enhancing the quality of life for terminally ill patients and families has been well documented. While previous studies have explored perspectives on quality home palliative care and end-of-life care in several countries, limited knowledge exists regarding its specific components in the Chinese context.
To explore the core elements that constitute quality home end-of-life care in China.
DESIGN, SETTING, AND PARTICIPANTS: This qualitative study integrated semistructured interviews, participant observation, and document and record collection. Data were collected from March to November 2024 in 4 health care organizations with hospice wards in Beijing. Purposive sampling was used to recruit terminally ill patients and families who had received home end-of-life care, as well as professionals who had provided care. All data were analyzed using thematic analysis.
Core elements of quality home end-of-life care in China.
A total of 39 participants were included: 12 patients (5 [41.7%] female and 7 [58.3%] male), 4 of whom were interviewed (mean [SD] age, 74 [3.5] years); 13 family members (6 [46.2%] female and 7 [53.8%] male; 6 interviewed, primarily spouses [mean (SD) age, 69 (6) years] and adult children [mean (SD) age, 41 (5.3) years]); and 14 professionals (mean [SD] age, 42 [7.8] years; 11 [78.6%] female and 3 [21.4%] male). Observations and interviews were conducted mainly during 19 home visits. Four themes and 10 subthemes were identified: (1) preliminary basis for home-based services, (2) communication strategies and practical support, (3) long-term stable care relationships, and (4) fulfilling end-of-life preferences in practice. These elements reflected a dynamic progression of trust relationships between patients, families, and professionals. While some elements were represented in previous studies, we found some unique aspects related to mutual efforts on both sides of the service and professionals' approach to the inconsistent needs of patients and families.
In this qualitative study, quality home end-of-life care in China can be described as a dynamic process of building and maintaining trust relationships between professionals, patients, and families. The findings provide a distinct understanding and may serve as a reference for developing a quality assessment framework for home end-of-life care. Future research should further develop this framework and evaluate effective strategies for delivering quality home end-of-life care within distinctive cultural and policy contexts.
家庭临终关怀在提高绝症患者及其家庭生活质量方面的功效已有充分记录。虽然此前的研究探讨了多个国家对优质家庭姑息治疗和临终关怀的看法，但在中国背景下，对其具体组成部分的了解有限。
探讨构成中国优质家庭临终关怀的核心要素。
设计、背景和参与者：这项定性研究综合了半结构化访谈、参与观察以及文件和记录收集。2024年3月至11月期间，在北京4家设有临终关怀病房的医疗机构收集数据。采用目的抽样法招募接受过家庭临终关怀的绝症患者及其家庭，以及提供护理的专业人员。所有数据均采用主题分析法进行分析。
中国优质家庭临终关怀的核心要素。
共纳入39名参与者：12名患者（5名[41.7%]女性，7名[58.3%]男性），其中4名接受了访谈（平均[标准差]年龄为74[3.5]岁）；13名家庭成员（6名[46.2%]女性，7名[53.8%]男性；6名接受了访谈，主要是配偶[平均（标准差）年龄为69（6）岁]和成年子女[平均（标准差）年龄为41（5.3）岁]）；以及14名专业人员（平均[标准差]年龄为42[7.8]岁；11名[78.6%]女性，3名[21.4%]男性）。观察和访谈主要在19次家访期间进行。确定了4个主题和10个子主题：（1）居家服务的初步基础，（2）沟通策略和实际支持，（3）长期稳定的护理关系，以及（4）在实践中满足临终偏好。这些要素反映了患者、家庭和专业人员之间信任关系的动态发展。虽然有些要素在之前的研究中有所体现，但我们发现了一些与服务双方共同努力以及专业人员应对患者和家庭不一致需求的方式相关的独特方面。
在这项定性研究中，中国优质家庭临终关怀可被描述为专业人员、患者和家庭之间建立和维持信任关系的动态过程。研究结果提供了独特的理解，可为制定家庭临终关怀质量评估框架提供参考。未来的研究应进一步完善该框架，并评估在独特的文化和政策背景下提供优质家庭临终关怀的有效策略。
