Department of Neurosurgery, Rigshospitalet, Copenhagen, Denmark.
Department of Clinical Research, Copenhagen University Hospital, Amager and Hvidovre Hospital Hvidovre, Denmark.
JBI Evid Synth. 2023 May 1;21(5):886-912. doi: 10.11124/JBIES-22-00022.
The objective of this scoping review was to identify and map the breadth of available evidence on relatives' wants and needs for involvement in the care of patients with an acquired brain injury.
Acquired brain injuries often occur suddenly and unexpectedly. Experiencing an acquired brain injury has major consequences, not only for the patients-due to the devastating impact on their physical, cognitive, social, and psychological well-being-but also for the relatives who may need to take on a lifelong role as a carer. Research has cited some benefits of involving relatives in the care of patients, including positive effects on the patients' health outcomes; however, there are few studies showing how relatives can be involved.
Studies that defined or assessed relatives' wants and needs for involvement in the care of patients with an acquired brain injury in all settings were included. Studies were included if they described any kind of wants and needs for involvement experienced from the perspective of relatives. The review considered all study designs, except for literature reviews.
The JBI methodology for conducting a scoping review was employed in accordance with an a priori published protocol. An extensive search was conducted in MEDLINE (PubMed), CINAHL (EBSCO), and Embase (Ovid). Gray literature was searched using Grey Matters and BASE. The initial search was conducted in February 2020 and updated in September 2021. This review was limited to studies published in English, German, or Scandinavian languages since January 2010. The data were extracted using a data extraction tool (authors, year of publication, country of origin, setting, study methods, and findings related to wants and needs for involvement) created by the authors. The review findings are reported as a descriptive summary, with tables and figures supporting the data.
The search identified 3854 studies, 31 of which were included. The studies were published between 2010 and 2021, and were conducted across 9 countries. In total, 16 studies applied a qualitative study design, 4 studies used a descriptive approach, 4 studies used a quantitative research design, 4 studies reported using a mixed methods design, and 3 studies employed a multi-methods design. The studies were conducted across a variety of settings, ranging from acute care to home. The international literature on the involvement of relatives of patients with acquired brain injuries comprises multiple published studies on different aspects of the topic and within various care contexts. The findings identified few studies describing wants and needs experienced by relatives in relation to involvement in the patient's disease trajectory.
The findings show that relatives' wants and needs are primarily related to information and communication, but are also related to collaboration with health care professionals. The findings illustrate that the complexity of involvement is comprehensive, with multiple aspects to consider.
本次范围综述的目的是确定和绘制现有关于亲属参与照顾获得性脑损伤患者的需求和期望的广度。
获得性脑损伤通常突然且出乎意料地发生。获得性脑损伤不仅对患者造成严重影响，导致身体、认知、社会和心理健康受到严重影响，而且对可能需要终身担任照顾者的亲属也会产生重大影响。研究表明，让亲属参与患者的护理有一些好处，包括对患者健康结果的积极影响；然而，很少有研究表明如何让亲属参与进来。
本研究纳入了所有环境中定义或评估亲属参与照顾获得性脑损伤患者的需求和期望的研究。如果研究从亲属的角度描述了参与经历的任何种类的需求和期望，则将研究纳入其中。该综述考虑了所有研究设计，除文献综述外。
根据预先发表的方案，采用 JBI 方法进行范围综述。在 MEDLINE（PubMed）、CINAHL（EBSCO）和 Embase（Ovid）中进行了广泛的搜索。使用 Grey Matters 和 BASE 搜索灰色文献。初始搜索于 2020 年 2 月进行，并于 2021 年 9 月进行了更新。本综述仅限于 2010 年 1 月以来以英语、德语或斯堪的纳维亚语发表的研究。使用作者创建的数据提取工具（作者、发表年份、原籍国、设置、研究方法以及与参与相关的需求和期望的发现）提取数据。综述结果以描述性摘要形式呈现，辅以表格和图形支持数据。
搜索确定了 3854 项研究，其中 31 项研究被纳入。这些研究发表于 2010 年至 2021 年期间，在 9 个国家进行。总的来说，16 项研究采用了定性研究设计，4 项研究采用了描述性方法，4 项研究采用了定量研究设计，4 项研究报告采用了混合方法设计，3 项研究采用了多方法设计。这些研究在从急性护理到家庭的各种环境中进行。关于获得性脑损伤患者亲属参与的国际文献包含了许多关于该主题不同方面的已发表研究，以及各种护理环境中的研究。研究结果表明，很少有研究描述亲属在参与患者疾病轨迹方面的需求和期望。
研究结果表明，亲属的需求主要与信息和沟通有关，但也与与医疗保健专业人员的合作有关。研究结果表明，参与的复杂性是全面的，需要考虑多个方面。
