Time: 9:00-12:00
Chairs:
- Co-Chair: Libby Sallnow, [Marie Curie Palliative Care Research Department, University College London, UK, End-of-Life Care Research Group, Vrije Universiteit Brussel, Belgium]
- Co-Chair: Steven Vanderstichelen [End-of-Life Care Research Group, Vrije Universiteit Brussel, Belgium, Compassionate Communities Centre of Expertise (COCO), Vrije Universiteit Brussel, Belgium]
- Co-Chair: Vilma Tripodoro [ATLANTES Global Observatory of Palliative Care, Institute for Culture and Society, University of Navarra, Pamplona, Spain, Instituto Pallium Latinoamérica, Buenos Aires, Argentina]
Speakers and Tentative Titles:
- Rebecca Newell and Juan Correa – Global panorama of compassionate communities
- Libby Sallnow – Ethics, equity, and public health palliative care
- Steven Vanderstichelen – Case studies: Relational care, community meaning, and death literacy
- Vilma Tripodoro – Measuring impact and social value in compassionate communities
Participants: 40
Overall Objectives and Significance:
Palliative care is increasingly recognised as an essential component of universal health coverage, yet access remains unequal worldwide, with only around 14% of those in need receiving it. While clinical services are critical, experiences of illness, dying, caregiving, and bereavement are fundamentally social, shaped by relationships, communities, and wider structural conditions. Public health approaches to palliative care recognise the central role of communities in addressing these needs; however, community-led initiatives remain under-recognised in research, policy, and delivery frameworks.
This symposium presents findings from the first global panorama of community-based initiatives, identifying 326 initiatives across 75 countries, alongside qualitative insights into how communities conceptualise and enact care. Together, these data demonstrate that compassionate communities are widespread, diverse, and active across all geographic and income settings. They function not only as practical responses to serious illness, dying, death, and grief, but also as an ethical and relational orientation to care shaped by local context and need. These findings will be situated within the broader evidence base, including through exploring example case studies. We will explore how compassionate communities are understood and enacted across diverse settings, and examine their implications for policy, systems integration, and equity.
A central focus of the session will be exploring key challenges for the field: as health systems increasingly look to communities as partners, how can responsibility and resources be shared, without transferring disproportionate burden? How do we address the risk that shifting greater responsibility onto communities, particularly those already under-resourced, may exacerbate existing inequalities or reduce access to clinical care. Efforts to measure impact may privilege what is easily counted, reducing complex, relational practices to narrow service metrics. This session will explore emerging approaches to evaluation that reflect the value of community-led care, exploring how community-based initiatives can be supported and evaluated in ways that capture their benefits and strengthen equity and sustainability.
The significance of this symposium for PHPCI:
- Providing new global evidence for one of the field’s central concepts on community care and empowerment
- Advancing theory by documenting community-based initiatives in a range of settings, and positioning them as both an ethical stance and practical response
- Exploring how we can integrate community-led care into policy, systems, and frameworks.
- Consider how we can measure community-based outcomes and evaluate interventions
- Explore key ethical and practical challenges such as unintended consequences of shifts in responsibility