D'Eer Louise, Quintiens Bert, Van den Block Lieve, Dury Sarah, Deliens Luc, Chambaere Kenneth, Smets Tinne, Cohen Joachim
End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Laarbeeklaan, Brussels, Belgium.
Compassionate Community Centre of Expertise (COCO), Vrije Universiteit Brussel (VUB), Pleinlaan, Brussels, Belgium.
Palliat Med. 2022 Apr;36(4):625-651. doi: 10.1177/02692163221077850. Epub 2022 Mar 14.
New public health approaches to palliative care such as compassionate communities aim to increase capacity in serious illness, death, and loss by involving civic society. Civic engagement has been described in many domains of health; a description of the characteristics, processes, and impact of the initiatives in palliative care is lacking.
To systematically describe and compare civic engagement initiatives in palliative care in terms of context, development, impact, and evaluation methods.
Systematic, mixed-methods review using a convergent integrated synthesis approach. Registered in Prospero: CRD42020180688.
Six databases (PubMed, Scopus, Sociological Abstracts, WOS, Embase, PsycINFO) were searched up to November 2021 for publications in English describing civic engagement in serious illness, death, and loss. Additional grey literature was obtained by contacting the first authors. We performed a quality appraisal of the included studies.
We included 23 peer-reviewed and 11 grey literature publications, reporting on nineteen unique civic engagement initiatives, mostly in countries with English as one of the official languages. Initiatives involved the community in their development, often through a community-academic partnership. Activities aimed to connect people with palliative care needs to individuals or resources in the community. There was a variety of evaluation aims, methods, outcomes, and strength of evidence. Information on whether or how to sustain the initiatives was generally lacking.
This is the first review to systematically describe and compare reported civic engagement initiatives in the domain of palliative care. Future studies would benefit from improved evaluation of impact and sustainability.
诸如关怀社区等姑息治疗的新公共卫生方法旨在通过公民社会的参与来提高应对重病、死亡和丧失亲人之痛的能力。公民参与在许多健康领域都有描述；但缺乏对姑息治疗中各项举措的特征、过程和影响的描述。
从背景、发展、影响和评估方法方面系统地描述和比较姑息治疗中的公民参与举措。
采用收敛性综合方法的系统性混合方法综述。在国际系统评价注册库（Prospero）注册：CRD42020180688。
截至2021年11月，检索了六个数据库（PubMed、Scopus、社会学文摘数据库、科学网、Embase、PsycINFO），以查找用英文描述重病、死亡和丧失亲人之痛方面公民参与的出版物。通过联系第一作者获取了更多灰色文献。我们对纳入的研究进行了质量评估。
我们纳入了23篇同行评审出版物和11篇灰色文献出版物，报道了19项独特的公民参与举措，大多来自官方语言之一为英语的国家。这些举措在其发展过程中让社区参与，通常是通过社区与学术机构的合作关系。活动旨在将有姑息治疗需求的人与社区中的个人或资源联系起来。评估目的、方法、结果和证据力度各不相同。普遍缺乏关于这些举措是否以及如何持续开展的信息。
这是首次对姑息治疗领域已报道的公民参与举措进行系统描述和比较的综述。未来的研究将受益于对影响和可持续性的改进评估。
