School of Nursing, Midwifery and Health Systems, University College Dublin, Bellfield, County Dublin, Ireland.
Research Support Librarian, Trinity College, Dublin 2, Ireland.
J Adv Nurs. 2024 May;80(5):1719-1731. doi: 10.1111/jan.15942. Epub 2023 Nov 20.
Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide-ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end-of-life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature.
Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA-ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home?
Current knowledge on this topic is limited; however, from this review, two main themes were identified: 'Challenges arising during transitioning' with subthemes of burden of care and fading away. The second theme 'Coping strategies' comprised subthemes of meaning-making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon.
N/A as this is a Scoping Review.
An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end-of-life care in the home. While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role.
在家中安详离世通常需要非专业护理人员的帮助和支持。这个角色通常是无偿的，范围广泛，而且往往要求很高。从诊断到亲人的死亡，非专业护理人员可能会经历一次或多次过渡，然而，人们对这个过程知之甚少。本次范围界定综述的目的是绘制、探索和理解护理人员在提供临终关怀时过渡的体验。对文献的初步搜索表明，很少有研究强调护理人员的观点，也没有承认他们在这一时期需要支持以确保顺利过渡。因此，本次综述有可能对文献做出有价值的贡献。
阿特塞克和奥马利（2005 年）的框架，进一步由列瓦克等人（2010 年）和彼得斯等人（2020 年）增强，被用于进行本次范围界定综述。扩展后的范围界定综述（PRISMA-ScR）指导报告。两位研究人员对从 1990 年至今的 PUBMED、PsychINFO、CINAHL、EMBASE 和 Web of Science 数据库以及一些灰色文献进行了系统搜索。对文献的标题和摘要进行了筛选，最终对 11 篇文章进行了叙述性综合，以回答以下研究问题：从文献中了解到哪些关于非专业护理人员在家照顾临终患者时的过渡情况？
目前关于这个主题的知识有限；然而，从本次综述中，确定了两个主要主题：“过渡期间出现的挑战”，具有照顾负担和逐渐消失的子主题。第二个主题“应对策略”包括意义构建、寻求常态和希望的子主题。这一证据可能支持未来过渡性护理干预的发展，并改善患者和护理人员的结果测量和体验，以为探索这一现象的更大规模研究提供信息。
由于这是一项范围界定综述，因此患者或公众没有贡献。
了解在家中照顾临终亲人时过渡的体验，可以帮助减轻非专业护理人员在家中提供临终关怀时面临的挑战。虽然非专业护理人员对支持那些希望在家中离世的人至关重要，但这个角色往往是无形的，家庭护理人员需要支持和认可，以减轻他们在过渡角色时面临的照顾负担和挑战。
