Research Centre Innovations in Care, Rotterdam University of Applied Sciences, Rochussenstraat 198, P.O. Box 25035, 3001, HA, Rotterdam, the Netherlands.
Department of Public Health, Erasmus University Medical Center Rotterdam, Dr. Molewaterplein 40, P.O. Box 2040, 3000, CA, Rotterdam, the Netherlands.
BMC Palliat Care. 2021 Oct 18;20(1):162. doi: 10.1186/s12904-021-00854-8.
Family caregivers are crucial in providing end-of-life care at home. Without their care, it would be difficult for many patients to die at home. In addition to providing care, family caregivers also need support for themselves. Nurses could play an important role in supporting family caregivers, but little is known about if and how they do so. The aim of this study is to explore how nurses currently approach and support family caregivers in end-of-life home care and which factors influence their support of family caregivers.
Data were collected using semi-structured interviews with 14 nurses from nine home care organisations in the Netherlands, in 2018. Interviews were audio-taped, transcribed verbatim and analysed using a thematic analysis approach.
We identified two underlying nursing perspectives on supporting family caregivers: an instrumental perspective (seeing family caregivers mostly as collaborative partners in care) and a relational perspective (seeing family caregivers as both providing and needing support). All the interviewed nurses stated that they pay attention to family caregivers' needs. The activities mentioned most often were: identification of support needs, practical education, support in decision-making about the patient's treatment, emotional support, and organising respite care, such as night care, to relieve the family caregiver. The provision of support is usually based on intuition and experience, rather than on a systematic approach. Besides, nurses reported different factors at the individual, organisational and societal levels that influenced their support of family caregivers, such as their knowledge and experience, the way in which care is organised, and laws and regulations.
Nurses tend to address family caregivers' needs, but such care was affected by various factors at different levels. There is a risk that nursing support does not meet family caregivers' needs. A more reflective approach is needed and evidence-based needs assessment tools may help nurses to systematically assess family caregivers' needs and to provide appropriate support.
家庭照顾者在提供居家临终关怀方面发挥着关键作用。如果没有他们的照顾，许多患者将难以在家中离世。除了提供照顾，家庭照顾者自身也需要得到支持。护士可以在支持家庭照顾者方面发挥重要作用，但目前尚不清楚他们是否以及如何提供支持。本研究旨在探讨护士目前在居家临终护理中如何接近和支持家庭照顾者，以及哪些因素影响他们对家庭照顾者的支持。
本研究于 2018 年在荷兰的 9 个家庭护理组织中，对 14 名护士进行了半结构化访谈，以收集数据。访谈内容被录音、逐字转录，并采用主题分析方法进行分析。
我们确定了护士在支持家庭照顾者方面的两种基本护理观点：工具性观点（主要将家庭照顾者视为护理工作的协作伙伴）和关系性观点（将家庭照顾者视为提供和需要支持的双方）。所有接受访谈的护士都表示，他们会关注家庭照顾者的需求。提到的最常见的活动包括：识别支持需求、实际教育、支持患者治疗决策、情感支持以及安排喘息护理，如夜间护理，以减轻家庭照顾者的负担。支持的提供通常基于直觉和经验，而不是系统方法。此外，护士报告了个人、组织和社会层面的不同因素，这些因素影响了他们对家庭照顾者的支持，例如他们的知识和经验、护理组织方式以及法律法规。
护士倾向于满足家庭照顾者的需求，但这种护理受到不同层面各种因素的影响。护理支持可能无法满足家庭照顾者的需求。需要采用更具反思性的方法，基于证据的需求评估工具可能有助于护士系统地评估家庭照顾者的需求，并提供适当的支持。
