Background: 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. Aim: To systematically describe and compare civic engagement initiatives in palliative care in terms of context, development, impact, and evaluation methods. Design: Systematic, mixed-methods review using a convergent integrated synthesis approach. Registered in Prospero: CRD42020180688. Data sources: 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. Results: 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. Conclusions: 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.

Background: Area-Based Compassionate Communities are community public health interventions which focus on the role of the community in palliative care provision. They apply a set of actions based on the Ottawa Charter for Health Promotion which aims to increase people’s control over their health. Aim: To review and compare Area-Based Compassionate Communities with respect to their contextual characteristics, development processes and evaluations. Design: A systematic integrative review with narrative synthesis. Registered in Prospero: CRD42020173406. Data sources: Five databases (Pubmed, Web of Science, PsycInfo, Embase and Scopus) were consulted, consisting of publications from 1999 onwards. This was supplemented with grey literature and author-provided documentation. Results: Twenty articles were drawn from the peer reviewed search, three from grey literature and two from author-provided documentation. Notwithstanding the substantial variation in what is reported, all Area-Based Compassionate Community initiatives focus on multiple action areas of the Ottawa Charter for Health Promotion. Variability in their contextual and developmental characteristics is high. Only a minority of initiatives have been evaluated and although conclusions are generally positive, what is evaluated often does not match their aims. Attaining support from policy makers can help in obtaining funding early in the project. Strengthening people’s social networks was a recurring community engagement strategy. Conclusions: While the concept of Area-Based Compassionate Communities is gaining momentum as a new paradigm for the creation of palliative care capacity across society, only a handful of initiatives have been described. The lack of formal evaluations of their envisaged health benefits indicates a pressing need for rigorous research about ongoing and future initiatives.

Background: New public health approaches in palliative care attribute an active role to civic society in providing care for those who are seriously ill, caring, or bereaved. Accordingly, Civic Engagement In Neighbourhoods regarding serious illness, dying and loss (CEIN) are emerging worldwide. However, study protocols that advise on how to evaluate the impact and complex social change processes underlying these civic engagement initiatives are lacking. Objectives: The main objective of this study is to describe the study protocol for the evaluation of civic engagement initiatives in serious illness, dying, and loss in two neighbourhoods in Flanders, Belgium. Design: A convergent-parallel mixed-method process and outcome evaluation for the CEIN study. Methods & analysis: We look at the evaluation of CEIN through a critical realist lens, thereby including the social, political, and economic determinants of social change in CEIN, the mechanisms to achieve this social change, the outcomes, and the mutual connection between these three aspects. We will conduct a convergent-parallel mixed-method process and outcome evaluation in which qualitative (i.e. observations, interviews, group discussions, and ego network mapping) and quantitative data (i.e. a pre–post survey) are simultaneously but separately collected and analysed and in the last stage combined by narrative synthesis. Discussion: This protocol illustrates the difficulty of operationalising the desired long-term impact of social changes regarding serious illness, dying, and loss into more manageable outcomes. We recommend a well-cogitated logic model that connects the outcomes of the study to its potential actions. Applying this protocol in practice is a constant exercise between providing sufficient flexibility to meet feasibility, desirability, and context-specific needs in the CEIN study and providing sufficient guidelines to structure and control the evaluation process.