Civic engagement in serious illness, death, and loss: A systematic mixed-methods review

Abstract

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.

The Compassionate Communities Connectors model for end-of-life care: implementation and evaluation

“… 25 , 26 However, recent systematic reviews and research collaborations have acknowledged the challenges associated with researching and evaluating public health palliative care initiatives. 15 , 16 , 27 – 32 As such, evaluations of community-led initiatives of practical and social support, or those focusing on outcomes involving palliative care volunteers and/or volunteer programmes, are scarce. The Compassionate Connector Program recently trialled in the South West of Western Australia sought to map and mobilise people’s personal and community networks of care.…”

Researching two Compassionate Cities: study protocol for a mixed-methods process and outcome evaluation

“…Such protocols increase transparency and inform other researchers in their choice of research methods, which can prove useful when studying the relatively recent and poorly understood phenomenon of Compassionate Cities. 11 , 33 …”

Researching Compassionate Communities: Identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives

“…32 The second review describes and compares “civic engagement initiatives in palliative care” or “compassionate community initiatives” in terms of context, development, impact, and evaluation. 33 The goal of the third review is to provide a clear overview of similarities and differences between Compassionate Communities on their contextual characteristics and development processes. 34 The tentative list of Compassionate Communities’ characteristics, directly drawn from the reviews on Compassionate Communities, was then translated into assessment criteria to appraise theoretical frameworks.…”

“…31 However, little attention has been given to how these outcomes are obtained. 32–34 The literature identifies several reasons for the lack of rigorous evaluations. First, developing evaluation tools is difficult given the diversity of targets prioritized by different communities.…”

“…33–35 Second, an important part of the initiatives is not-for-profit and volunteer-based, so funding and resources are often lacking to evaluate the practices and programs developed. 33,36 Third, the way people experience events of serious illness, death, dying, and loss is influenced by a wide range of factors (psychological, sociological, economic, cultural, political), which requires an adaptation of conventional (often biomedical) research frameworks predicated on linearity and predictability. 2,31 The characteristics of public health palliative care initiatives suggest that research needs to focus more—as compared with clinical or health service research approaches—on context and the needs and contributions of a variety of stakeholders involved, and the social and economic determinants of health.…”