Background

Older people often experience multiple care transitions. These care transitions are critical and stressful moments for both older people and their informal caregivers alike and can have a negative effect on long-term outcomes. Greater attention needs to be paid to the involvement of older people and their informal caregivers in the process of decision-making when it comes to transitional care.

Objective

To provide an overview of older people's and their informal caregivers' experiences with decision-making, particularly when facing a transition from home to an institution for medical treatment or long-term care, or vice versa.

Design

A systematic literature review, perfomed within the scope of the TRANS-SENIOR network and reported according to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines.

Data sources

Five databases were searched: PubMed, EMBASE, Web of Science, PsycINFO, and CINAHL.

Review methods

This review included qualitative empirical reports that were published from the inception of the respective databases up to April 2020. The search strategy was based on five main concepts: ‘old age’, ‘informal caregivers’, ‘Involvement in decision-making’, ‘transitional care’, and ‘home’ as a location for the start or the end of the transition. All abstracts and full texts were screened double-blind, following specific eligibility criteria. Data extractions were performed by two independent reviewers and the quality of studies was assessed.

Findings

We included a total of 22 studies. The most relevant themes from the experiences of older people reported were: a) feelings of reduced autonomy and increased dependency, b) preferences for involvement in decision-making c) the influence of healthcare professionals, and d) support from informal caregivers. The most relevant themes from the experiences of informal caregivers were: a) informal caregivers' involvement in the decision-making process, b) the burden of responsibility, and c) barriers to decision-making. Overall, the experiences of older people and their informal caregivers varied considerably and were sometimes contradictory.

Conclusions

When facing care transitions, older people express feelings of reduced autonomy and increased dependency. Their preference regarding involvement in decision-making varies considerably and their decisions are influenced by healthcare professionals and the support from informal caregivers. Informal caregivers find it important to be involved in the decision-making process, even though they experience the burden of responsibility and report specific difficulties relating to decision-making. Future studies should focus on methods by which to empower older people and informal caregivers in transitional care decision-making.

This systematic review has been registered in Prospero (CRD42020167961).

中文翻译：

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老年人和非正式护理人员在过渡性护理决策中的经验、观点和需求：系统评价

背景

老年人经常经历多次护理过渡。对于老年人和他们的非正式护理人员来说，这些护理过渡是关键和压力的时刻，并且可能对长期结果产生负面影响。在涉及过渡性护理的决策过程中，需要更加关注老年人及其非正式护理人员的参与。

客观的

概述老年人及其非正式护理人员的决策经验，尤其是在面临从家庭过渡到医疗机构或长期护理机构时，反之亦然。

设计

系统的文献综述，在 TRANS-SENIOR 网络范围内进行，并根据提高定性研究综合报告 (ENTREQ) 指南的透明度进行报告。

数据源

搜索了五个数据库：PubMed、EMBASE、Web of Science、PsycINFO 和 CINAHL。

审查方法

该审查包括从各个数据库成立到 2020 年 4 月发布的定性实证报告。搜索策略基于五个主要概念：“老年”、“非正式照顾者”、“参与决策”、“过渡护理”和“家”作为过渡开始或结束的位置。所有摘要和全文均按照特定的资格标准进行双盲筛选。数据提取由两名独立评审员进行，并评估研究质量。

发现

我们共纳入了 22 项研究。报告的老年人经历中最相关的主题是：a) 减少自主权和增加依赖的感觉，b) 参与决策的偏好 c) 医疗保健专业人员的影响，以及 d) 非正式护理人员的支持。非正式照顾者经验中最相关的主题是：a) 非正式照顾者参与决策过程，b) 责任负担，以及 c) 决策障碍。总体而言，老年人及其非正式照顾者的经历差异很大，有时甚至相互矛盾。

结论

在面临护理过渡时，老年人会表达自主性降低和依赖性增加的感觉。他们对参与决策的偏好差异很大，他们的决定受到医疗保健专业人员和非正式护理人员支持的影响。非正式护理人员发现参与决策过程很重要，即使他们承担着责任负担并报告与决策有关的具体困难。未来的研究应侧重于在过渡性护理决策中赋予老年人和非正式护理人员权力的方法。

该系统评价已在 Prospero (CRD42020167961) 注册。