An Inter-provincial comparison of innovative programs that help individuals and families affected by life-limiting chronic illnesses navigate end-of-life

Health Research BC is providing match funds for this research project, which is funded by CIHR’s Strategy for Patient Oriented Research (SPOR) Primary and Integrated Health Care Innovations (PIHCI) Network – Comparative Program and Policy Analysis Grant. 

Dr. Kelli Stajduhar is working with a team of researchers across Canada including PI R. Urquart (NS), and Co-Is K. Pfaff (ON), G. Johnston (NS), B. Lawson (NS), C. Tschupruk (NS), and G. Warner (NS). Using a realist evaluation, survey questionnaires, and in-depth interviews with program personnel, programs users and family members, this study will focus on gaining an improved understanding of innovative community-based navigation programs across Canada with a focus on end-of-life care and support.

Of particular interest are those programs that have been developed and successfully put into place across various health jurisdictions and which help educate patients and families, link them to critical health system and community services and supports, and facilitate coordination of services and supports across healthcare settings. Generally speaking, the programs of interest will help patients access the services and resources they need, though it’s expected the way in which they do so will vary from program to program.

It will be examined 1) whether and how these navigation programs work across different community and health system contexts; and 2) what is needed to integrate successful community-based navigation programs into currently existing primary healthcare services and systems of care so they are sustainable, and can improve patient and family outcomes across Canadian jurisdictions and healthcare settings at the end-of-life.

End of Award Update – August 2023

Most significant outputs

Navigation programs tend to be cancer-centric, and this pan-Canadian research project looked at programs for those with other chronic life limiting illnesses. A program theory was developed that sets out the conditions for successful programming.

Impacts

This program theory has the potential to impact the development, evaluation, and sustainability of future programs.

Potential Influence

We hope that navigation programs are recognized as a part of the health care continuum of care. This recognition will allow programs to receive sustainable funding and build much needed infrastructure that is responsive to the needs of people living with life-limiting chronic illness in our communities.

Next Steps

As time allows, the research team will continue to publish data and meet with community members who are interested in the research results.