Newell R, Correa-Morales JE, Tripodoro VA, Vanderstichelen S, Aggarwal G, Aoun S, Das E, Demachkieh F, Downar J, Librada S, Hilbers J, Lapenskie J, Luyirika E, Mohammed S, Mori M, Sittiwantana E, Sallnow L. Connecting communities across the globe: Atlas protocol. Palliat Care Soc Pract. 2025 Dec 4;19:26323524251396994. doi: 10.1177/26323524251396994.
Abstract
Background: Providing universal access to palliative care is increasingly recognised as a global public health priority, especially in low- and middle-income countries. Compassionate communities could help with provision by fostering community-led responses to dying, death and grief. Despite their global growth, compassionate communities are often absent from national and international palliative care strategies, and few are represented in academic literature. This, along with their diversity and community-defined nature, can contribute to difficulties in documentation, evaluation and visibility, limiting the ability to showcase their benefits, form partnerships and evaluate practice.
Objectives: This study protocol outlines the development of the first global atlas of compassionate communities, aiming to map their locations and increase understanding of their structures, activities and impacts.
Design: A participatory methodology was used. This enabled global participants to complete and share the survey based on their experiences with community programmes addressing serious illness, dying and grief. A diverse steering committee guided the design, validation and piloting of the survey to ensure clarity, cultural sensitivity and accessibility. Eighteen global experts contributed to developing and validating the survey, with 14 of 15 items meeting the Content Validity Index threshold. The final survey captures data on location, aims, evaluation, challenges and impact. Dissemination involves global networks, social media and snowball sampling.
Discussion: This protocol addresses a critical gap in Public Health Palliative Care literature by providing an inclusive and participatory method to map the compassionate community's landscape. The resulting data will promote visibility, partnerships and future research, supporting greater recognition of global compassionate communities and their contributions to primary palliative care.
Keywords: community engagement; compassionate communities; palliative care; primary palliative care; public health palliative care.
Plain language summary
Creating a global map of compassionate communities supporting palliative care This study shares a plan to create the first global map of compassionate communities—local groups that help people through serious illness, dying, and grief. A simple, culturally sensitive survey was developed with input from global experts to collect information on where these communities are, what they do, and how they make a difference. The goal is to raise awareness, build partnerships, and support future research to show how these community efforts improve palliative care around the world. © The Author(s) 2025.
