Mikaelsson Midlöv Elina, Porter Susann, Sterner Therese, Sjögren Forss Katarina, Lindberg Terese
Blekinge Institute of Technology, Faculty of Engineering, Department of Health, Valhallavägen 1, Karlskrona, 371 79, Sweden.
Faculty of Health and Society, Department of Care Science, Malmö University, Malmö, Sweden.
BMC Palliat Care. 2025 Apr 21;24(1):108. doi: 10.1186/s12904-025-01744-z.
Relative's efforts are essential when palliative care is provided at home and support from healthcare professionals is needed. Despite this, since the support provided varies, relatives may have unmet support needs. Many people receive general palliative care at home rather than specialised care, and nurses play a significant role in supporting relatives. This study aimed to explore registered nurses' experiences of supporting relatives before and after a patient's death when general palliative care is provided at home.
This study used a qualitative explorative design. Data were collected through focus group interviews with 18 registered nurses in home care in Sweden and were analysed using content analysis. The Consolidated Criteria for Reporting Qualitative Research checklist was used for explicit reporting.
The findings are presented in four categories with subcategories: receiving support to provide support, continuously providing understandable information, balancing different needs and building relationships facilitates safety and identifying needs.
Even if registered nurses support relatives to some extent, they rarely reflect on the support they provide and lack structure in providing support both before and after the patient's death. The findings showed inadequacies in support after the patient's death, which is also emphasised in previous studies. The findings also showed deficiencies in routines, local guidelines and checklists as well as in training and education on how to support relatives when palliative care is provided at home, thereby risking that relatives' needs remain unmet. This highlights the need for creating routines and developing detailed local guidelines and checklists on providing support to relatives both before and after the patient's death.
在家中提供姑息治疗时，亲属的努力至关重要，且需要医疗专业人员的支持。尽管如此，由于所提供的支持各不相同，亲属的支持需求可能无法得到满足。许多人在家中接受的是一般姑息治疗而非专科护理，护士在支持亲属方面发挥着重要作用。本研究旨在探讨注册护士在患者在家中接受一般姑息治疗期间，在患者死亡前后支持亲属的经历。
本研究采用定性探索性设计。通过对瑞典18名居家护理注册护士进行焦点小组访谈收集数据，并使用内容分析法进行分析。采用《定性研究报告统一标准》清单进行明确报告。
研究结果分为四类及子类别呈现：获得支持以提供支持、持续提供易懂信息、平衡不同需求以及建立关系促进安全并识别需求。
即使注册护士在一定程度上支持亲属，但他们很少反思自己提供的支持，在患者死亡前后提供支持时缺乏系统性。研究结果显示患者死亡后的支持存在不足，此前的研究也强调了这一点。研究结果还表明，在常规流程、当地指南和清单以及关于在家中提供姑息治疗时如何支持亲属的培训和教育方面存在缺陷，从而可能导致亲属的需求无法得到满足。这凸显了制定常规流程以及制定详细的当地指南和清单以在患者死亡前后为亲属提供支持的必要性。
