Conference Agenda

Background: Since 2021, an international collaboration has emerged between two research teams working on compassionate community projects in Belgium and Canada. Both teams were involved in action-research projects that aimed to co-design, implement, and evaluate two compassionate communities in each country. Those two projects took place over the same period (2018-2023), used similar data collection methods (e.g. observations, interviews and group discussions), and both focused on civic and community engagement in serious illness, end-of-life, loss, and grief. This presentation will focus on comparing the development processes, community engagement dynamics and outcomes of compassionate communities in Belgium and Canada, thereby stimulating international cross-learning.

Objectives: The 8th PHPCI Conference seems to be an ideal opportunity to offer a cross-cultural perspective on two Belgian and two Canadian compassionate communities. The objectives are to comparatively describe and reflect on community development processes and community engagement dynamics to understand how these initiatives can be adapted and implemented effectively in diverse urban, rural, cultural, or socio-economic contexts.

Design & Methods: Two action-research projects were conducted independently in Canada and Belgium over 5 years. Data were collected and analyzed using an ethnographic method (Canada) and a convergent parallel mixed-method process and outcome evaluation (Belgium). To draw cross-cultural conclusions, we compared specific results relating to initiation, local contexts, community development and engagement processes (e.g. funding source, stakeholders involvement, meetings structures, strategies to reach and engage communities).

Results: Insights from this cross-cultural comparison provide a nuanced understanding of the dynamics and outcomes of research initiatives that bridge academia and community development. We observed that the source of funding, community leadership, and a sense of ownership have an important impact on outcomes (e.g. type of implemented projects, populations reached), perceived changes (e.g., an increased sense of community belonging and social connectivity), and sustainability.

Conclusion: Our findings contribute to narrowing the knowledge gaps on how differences in funding and coordination influence the scope of actions, community engagement processes and sustainability, suggesting the need for further in-depth cross-cultural comparisons.

Background: It is important to have a model to assess if Compassionate Cities (CC) are having the effect on the community that they are expected to have. Additionally, such model could guide the development of new CC. Although in terms of standardization and comparison, to have a single model would be ideal, due to the socioeconomic and cultural differences of each region, it is not known how feasible this would be.

Objectives: Based on the results of focus groups conducted across three diverse CC, we aim to assess the feasibility of creating a general model to guide the evaluation of already existing programs and guide the development of new ones.

Methods: With the aim of identifying potential outcomes (benefits) from CC, we conducted 14 focus groups in three cities including caregivers and other community users of the CC, health care providers, members of governmental and non-governmental organizations allied with the CC, and the coordinating group of the CC. We coded the discussions using conventional content analysis and built a list of the outcomes mentioned. Then, we put duplicates together and put together those that were similar enough to be merged into a more general one that encompassed the others.

Results: We obtained a final list of 44 outcomes. Of them, 22 were present in the three programs, 14 were present in two of the programs, and the remaining eight were present only in one of the programs. Outcomes related to the training of the general community in end-of-life topics, providing access to centralized information about where to direct people with needs, and transforming the society to be more compassionate on a daily basis, were often reported in the three cities. Examples of those that were only mentioned in one city are: “Contribute to the current social and demographic challenge” (Bern), “Make hospitals a more welcoming place” (Buenos Aires), and “Enable access to and redistribution of care supplies” (Medellin).

Conclusion: Outcomes that represent the basis of the CC initiatives were reported in the three CC. Outcomes reported in only one CC can be seen as indicators of the capacity of each health system to cover basic needs. This speaks of the possibility of creating a single model, at least among these three contexts, which could possibly be expanded to other similar ones. However, it also reflects the need that, as part of the model, there is room to evaluate other aspects specific to each community according to its context.

Background: Raising awareness of palliative care and advance care planning is essential to better prepare people for living with serious illness, dying, caregiving and grieving. We undertook a multi-year, multi-sectoral Compassionate Communities initiative to increase public awareness and understanding of palliative care and advance care planning. Public education tools were adapted to our local context and implemented in collaboration with community partners.

Objectives: To develop an evaluation framework for: 1) determining program effectiveness in raising public awareness of palliative care and advance care planning, and 2) contributing to best practice and knowledge on evaluating Compassionate Communities public awareness initiatives.

Design: Program development and implementation

Methods: We reviewed the literature to identify relevant framework(s) to guide our evaluation. Key informant interviews were held with stakeholders to solicit feedback on the selected evaluation framework(s) and proposed measures.

Results: A logic model was developed to synthesize the goals, inputs, audience, activities, outputs, process measures and outcome measures for the program. We selected the Healthy End of Life Program (HELP) Evaluation Framework to guide our process evaluation, based on its public health palliative care approach to evaluation, health promotion principles, and community development. We structured our outcome evaluation around the Australia Palliative Care Evaluation Framework to capture impacts on ‘consumers’, ‘providers’, and the ‘broader care delivery system’. Outcome measures were adopted or adapted from validated tools where available and appropriate; some new measures were developed to assess domains lacking validated tools. Data collection is proving feasible and meaningful: to date, our process measures indicate we have created change in six of the eight HELP domains (People, Programs, Participation, Practice & Practitioners, Place, Partnerships); outcome data collection has just begun, but preliminary data indicate our tools are improving knowledge of, and attitudes, toward palliative care and advance care planning.

Conclusion: Whereas the evaluation of Compassionate Communities initiatives is a relatively new area of study, we hope this evaluation framework proves useful to others undertaking similar public awareness initiatives.

Funding provided by Government of Alberta. Opinions do not necessarily reflect the position of the Alberta government.

Healthy End of Life Project (HELP) Ottawa, a community-based, participatory action
research project which served as a pilot for a Canadian version of a similar research endeavor at LaTrobe University in Australia (Grindrod & Rumbold, 2016, 2018). Aligned with the work of Dr. Allan Kellehear (Kellehear, 2005, 2013, 2020, 2022) and the international Compassionate Communities movement, HELP Ottawa was funded by the Mach-Gaensslen
Foundation of Canada, a private foundation, and sponsored by Compassionate Ottawa (a non-profit organization),and hosted at Carleton University.

Over the course of the project (2019-2022), HELP Ottawa worked at four sites, Christ Church Bells Corners, Orleans United Church, and Centretown and South-East Ottawa Community Health Centre, conducting baseline research, building capacity in research and community development, and developing, implementing and evaluating project initiatives based on the research findings. Over forty initiatives were implemented across the four sites, and eight multimedia toolkits have been created, to support other sites in building their own site-specific initiatives.

Building on the momentum established by HELP Ottawa, Tri-Council funding was received to support toolkit translation, knowledge mobilization, knowledge translation and capacity building through four community-site forums, and a community-wide Summit. The four forums will be tailored to each of the host sites and will include interactive presentations,
experiential learning activities, and future planning. The Summit will engage a broader audience, including decision makers, to establish an Action Plan with the goal of building more compassionate responses to death, dying, grief, and loss in Ottawa. Each of the forums and the Summit will be open to the public and extend the knowledge mobilization beyond the community .

Engaging with over 200 participants, from community members, site facilitators, site leaders, health and social service providers, graduate students, government representatives, and policy makers through four forums and a final Summit. Further, we expect a wider audience will engage with the translated toolkits online. Our hope is to empower communities to be part of end-of-life care.

BACKGROUND

In history, Philippines had been one of the most attractive colonies in the world with 3 different colonizers i.e. Spain, USA, and Japan with the longest colonization of 333 years by Spain. This had a great impact on the formation of customs and traditions around the care of the sick and dying among Filipinos that are influenced by religion and traditional belief systems. It is noteworthy that during the pre-colonial Philippines, there were established tribes and ethnicities like the Tagalog, Igorot, Badjao, etc. that have strong and rich culture and traditions and are still evident today. This paper highlights the blending of Filipino culture and religion around caring for the sick and the dying.

OBJECTIVES

To describe the Filipino traditions surrounding the care of people who are sick and at the end of life

DESIGN

This paper was based on textual references such as published journal articles, editorials, official websites of private and government agencies; a personal testimony, and interviews with focused group discussions.

METHOD

A thematic analysis was made based on the following questions:

• Most communities/regions in the world have their own traditions, customs, and history of caring for the sick and people at the end of life.

  • Describe the systems/traditions which were or still are in place in your region.

  • Discuss the similarities and differences with concepts in modern palliative care.

  • Is there a scope for integration?

RESULTS

Similarities and differences of practices in Filipino culture and Modern Palliative Care were described based on the following themes: Preferences of care, Communication patterns, Decision-making process, Healing methods, and Other psychosocial support. Generally, there is a stigma on discussing death in the Filipino culture. Filipinos prefer to be cared for at home and opt for less aggressive management at the end of life. Decision-making is family-centered and is highly influenced by who supports the patient financially as a sign of gratitude and respect. People living in less civilized areas prefer traditional healing methods as initial care while people living in more civilized areas prefer modern medicine. Lastly, Bayanihan is a concept of volunteerism among Filipinos where members of the family or community willingly contribute to care for the sick and the dying person.

CONCLUSION

The care of the sick and the dying in Filipino culture is highly influenced by its history, religion, and the evolving modernization.