5th International Public Health & Palliative Care Conference
Ottawa, Ontario. September 17 to 20, 2017
Workshop - The social determinants of health in life and death: research and promising practices in three Canadian cities to improve access to palliative care for structurally vulnerable people
Presenters: Dr. Kelli Stajduhar, Naheed Dosani, Simon Colgan, Sonya Jakubec
People who experience a deficit in the social determinants of health (SDOH) including inadequate housing, poverty, and racialization, as well as high rates of mental health and substance use, and stigmatization of diseases such as HIV/AIDS, are often underserved by current palliative care services. “Structurally vulnerable” people have fewer social supports, lack financial resources, adequate and ‘safe’ housing for formal care provision, and often die in places that do not meet their unique needs, alone, or in the care of workers who have limited training and support to provide quality palliative care. In this workshop we will draw on our experiences of working with structurally vulnerable people through the Palliative Education And Care for the Homeless (PEACH) program in Toronto and the newly developed, Calgary’s Allied Mobile Palliative Response Program (CAMPP), and findings from a three-year ethnographic study in Victoria examining access to palliative care for structurally vulnerable people.
Responses to this public health issue require community-led, participatory partnerships. In this interactive workshop, we will engage participants in conversations related to promising practices to improve access to high quality palliative care for individuals experiencing structural vulnerabilities, and encourage (re)conceptualizations and (re)orientation of home, family, and caregiving. We will: (1) synthesize research regarding care for structurally vulnerable populations in need of palliative care; (2) discuss promising practices for improving access to care for these populations; and (3) work with participants to apply these promising practices in diverse case examples.
Oral Papers - Volunteer navigation partnerships: building community capacity for early palliative care
Presenter: Dr. Barb Pesut
Hospice volunteers have a long and distinguished tradition of providing care for clients dying in the community. With developments in a public health approach to palliative care, many hospice societies are considering how they can engage their communities more meaningfully with the view to making palliative care more accessible. The purpose of this presentation is to present the findings of an innovative program called NCARE (navigating, connecting, accessing, resourcing, engaging) which was designed to increase hospice engagement toward a compassionate community approach to care. Volunteers who were trained in navigation provided supportive services in the home for clients living with advanced chronic illness. Interventions included assisting clients with making supportive connections, identifying and accessing relevant resources, engaging with meaningful activities, and assisting with decision-making. Volunteers were partnered with a nurse navigator who provided oversight and mentoring. An advisory committee made up of stakeholders from health care, social care, and local government provided direction for the project. NCARE was successfully piloted in 2015/2016 and is now being implemented in communities across Canada. Clients who have taken part in the program indicate that it improves their quality of life; volunteers have described the role as satisfying and meaningful. Overall, the intervention has the potential to contribute to the sense of belonging, safety, and support that characterizes the compassionate community.
Oral Paper - Wired for living: developing a palliative approach to care for young adults
Presenters: Karen Cook, Kim Bergeron
A growing population of young adults (YAs) with life-limiting conditions require a developmentally appropriate approach to care. Like all YAs, they are wired for living and aspire to attend post-secondary education, have meaningful vocation or work, and live independently. However, their developmental goals may collide with changing symptoms or end of life. Further, adult services are not designed to address their developmental, social, education and financial needs.
YAs with life-limiting conditions will benefit from a public health palliative approach to care, that matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. A palliative approach to care for YAs facilitates collaborative partnerships across community and health agencies to ensure timely and seamless resources to meet their needs. These resources will support their quest to maximize their quality of life and opportunities in an abbreviated time frame. Currently, there are few programs that recognize the unique palliative needs of YAs.
Successes, challenges and results of our research, Bridging the Gap: Developing a Palliative Approach to Care for Young Adults will be described. We used a three-phase online patient engagement strategy to hear the voice of YAs with life limiting conditions, their families, and health and community professionals. This research culminated in a prioritized plan to enhance well-being, improve access to services and funding, build relationships, and develop a supportive community. Opportunities and barriers for research engagement with the YAs, their parents, and community and health providers will also be presented.