Chair: Stephen Ginsborg
a. Canada launches Health End of Life Project (HELP) Ottawa: Compassionate Ottawa initiates a community-based, participatory action research project
All Authors: Dr. Pamela Grassau, Carleton University; Dr. Charles Barrett, Compassionate Ottawa; Dr. James Nininger, Compassionate Ottawa; Dr. Arne Stinchcombe, Saint Paul University; Dr. Roanne Thomas, University of Ottawa; Dr. David Wright, University of Ottawa; Dr. Mary Lou Kelley, Lakehead University and Compassionate Ottawa.
Presenting Author: Dr Pamela Grassau
Canada launches Healthy End of Life Project (HELP) Ottawa: Compassionate Ottawa initiates a community-based, participatory action research project.
Canada is in the early stages of adopting a public health approach to palliative care. Compassionate Ottawa (CO), a recognized, volunteer-led compassionate community leader in Canada, partnered with community-based researchers and palliative care experts, to design a comprehensive, participatory, community-based research initiative.
Drawing on the ground-breaking work of the Healthy End of Life Project (HELP) at La Trobe University, CO collaboratively designed a 3-year, pilot project entitled HELP Ottawa. Situated in Ottawa, Ontario (Canada) the overall goal of HELP Ottawa is to develop a Canadian-focused HELP framework that will mobilize more confident, competent, caregiving networks and caregivers to help people living with advanced age, frailty, advanced chronic and terminal illness to receive palliative and end-of-life care at home or in the community. Research sites are two community health centres and two faith communities. HELP Ottawa draws on a comprehensive case study design and utilizes participatory action research (PAR) principles, methods and evaluation components.
Officially launched in February 2019 this presentation will emphasize our overall research design and methods and how we engaged directly within each site with people living with aging, frailty, and illness and their families and networks, a range of health and social care providers, varying formal and informal community and neighbourhood networks, and importantly, local citizens. Concrete steps and practices will be shared which reflect specific research objectives of strengthening community social networks, organizational cultures and linkages with local health services.
Conclusions and Application PHPC
Sharing our initial findings and our lessons on how we developed, partnered and began to implement this work, offers important insights for other compassionate community sites about the collaborative processes and practices which inform community based, participatory, public health approaches in palliative care.
b. Renegade Stories: What are the lessons learnt from people using a social approach to dying, death and loss?
All authors: Dr Kerrie Noonan
Prof Debbie Horsfall
Prof Rosemary Leonard
Presenting author: Dr Kerrie Noonan
Dying well is a social issue, yet there is very little evidence that the social model has been incorporated into end-of-life care practices in Australia. This research aimed to explore the lived experiences of people who, despite the dominant biomedical approach to end of life and deathcare, their work is guided by social or new public health approaches to dying, death and loss.
Critical social science is concerned with questioning dominant ideologies and taken-for-granted assumptions, and giving voice to alternative viewpoints. In-depth interviews were conducted with 12 people (6 institutionally based and 6 community based) who work in end of life and death care. These ´deathworkers´ identified as palliative care specialists, nurses, academics, death doulas/end of life workers, artists, community development workers and death educators. Methods of analysis were informed by a critical and interpretive approach using a six phase inductive thematic approach outlined by Braun and Clarke (2006).
1.Strategies and tactics used for creating social and cultural change are shaped and influenced by workplace setting (i.e.institutional or community) and death literacy
2. The 'siloed' system of end of life care despite its limitations creates 'transitional spaces' that can activate social change practices and activism.
3.Informal or community based work was invisible to the formal healthcare and deathcare systems even though it was practiced across, within, and around all of the silos of care, at any stage of illness, including post-death work in preparation for funeral and burial.
If palliative care and other formal service providers are going to adopt social practices such as compassionate communities, a greater acknowledgement of existing community capacity and informal end of life care is needed. If public health approaches to palliative care develop into a social movement, transformative practice, and emergent leadership is needed.
c. Collective Social Capital: A new model for social capital for end of life care
Presenting Author: Dr Libby Sallnow
An appreciation of the social determinants of health has led to the inclusion of new public health principles and practice within health and social care. End-of-life care has been no exception although there has been little empirical exploration and the approaches remain poorly characterised.
The aim of this study was to explore how a compassionate community project is experienced, what tensions exist, what processes support or impede the work, what specific challenges such a project developed from within the hospice sector presents and what learning exists for the wider field.
A mixed methods study employing multiple methods of data collection was performed. Data collection methods included: interviews; focus groups; participant observation; documentary analysis and service records. Ethics approval was obtained. Data were analysed according to modified grounded theory and using online software tool Dedoose.
Twenty-one interviews, two focus groups and 19 episodes of participant observation were conducted, 11 documents and service data on 180 Compassionate Neighbours and 173 Community Members were also included. Six key actions facilitated integration of new public health approaches with service provision approaches and three underlying drivers underpinning the work as a whole included: altered power dynamics, expression of reciprocity in relationships and the development of agency.
Conclusions and application to PHPC:
This study illustrates the processes at work within a compassionate community project and the importance of redressing the power dynamics existing within traditional provider-recipient relationships. The equity created allowed for reciprocal relations to emerge between participants both within the project and between the community and the hospice. The new term ‘collective social capital’ captures this new learning and provides novel perspectives on the role of reciprocity and interdependency between the lay and professional worlds and opportunity for a reflexive and critical dialogue to take place between partners.