How compassionate communities are implemented and evaluated in practice: a scoping review

Abstract

Background Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. Methods We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. Results Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. Conclusions The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

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

“…This research builds upon the research describing the links between informal and formal care 36 , 42 by examining the impact of this relationship from multiple perspectives and supports the growing body of international research and evaluation reporting the outcomes of compassionate communities. 6 , 7 …”

Comunidades Compasivas: intervención comunitaria para la prevención del duelo complicado. Modelo implantado por Madrid Salud

“…Los beneficios del apoyo por parte de la comunidad en estos procesos se han visto reflejados en numerosos estudios (2,3) desde que, en los años 70 se comenzó a dar valor a los modelos comunitarios para la intervención en salud. Tres de ellos, se describen a continuación.…”

How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol

“…Results from a recent scoping review show that, while several hundred compassionate community initiatives have been implemented and evaluated worldwide, the engagement of community members is rarely reported and evaluated. 22 Overall, they are mostly engaged as ‘target users’ of compassionate communities, with evaluations being largely focused on individual outcomes rather than on their collective engagement in the strategic and early stages of compassionate community development (e.g. priority-setting, need assessment, and governance).…”

“…Another knowledge gap identified by most evaluation studies and systematic reviews in the field of compassionate communities is the lack of information on how local context shapes the process of community engagement and influences the impact of compassionate communities. 8 , 22 – 25 In fact, studies rarely explore how local contexts shape the impacts on individuals, communities, organizations, populations, and health care services. Compassionate communities and cities are complex social innovations taking years to develop and to bring about results.…”