Network for End of Life Studies

End of life Navigation

"Occupational Therapy

Dr Grace Warner studies community-based health services for older adults and their families and self-management programs. The methods she used include implementation science, realist evaluation; mixed methods and integrated knowledge translation."

 

End of life Navigation

Project Title

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

Time Period and Funding

2018-2020, CIHR Strategy for Patient Oriented Research (SPOR) Primary and Integrated Primary Care Innovations (PIHCI) Comparative Program and Policy Analysis Grant. $124,540 over two years plus 1:1 matching funds

Principal Investigators

Robin Urquhart (Nova Scotia Health Authority (NSHA), Dalhousie), Grace Warner (Dalhousie), Cheryl Tschupruk (NSHA, Knowledge User), Kelli Stajduhar (U Victoria), Kathy Pfaf (U Windsor)

Co-investigators

Grace Johnston (Dalhousie, NSHA), Bev Lawson (Dalhousie), Lisa Garland Baird (UPEI), Denise Marshall (McMaster), Michelle Howard (McMaster), Lisa Dolovich, (McMaster), Suzanne McMurphy (U Windsor), Leslie Malloy-Weir (McMaster)

Patient Representatives: Juanna Ricketts (NS), J Purdon, D Roberts, D Sattler

Objectives:

  • Use integrated knowledge translation to engage patients/families and knowledge users in research.
  • Identify Canadian innovative community-based navigation programs, and components that address the needs of individuals affected by life-limiting illness and their families who are living in the community.
  • Compare how well these programs a) improve individuals’ and families’ navigation by increasing their awareness of, access to, and/or coordination between needed services and supports; b) are integrated into primary healthcare services and systems of care; and c) support end of life goals including preferences for care and death.
  • Identify the determinants of successful implementation of these innovative programs in different institutional, policy, and socio-political contexts.

Methods

This two-phased project use realist evaluation as the methodological framework to evaluate navigation programs and their implementation.

Phase 1 will involve a horizon scan of innovative community-based navigation programs across Canada to select and evaluate innovative programs. A Delphi panel will then be undertaken with our patient/family and knowledge user team members to rank programs according to those they feel are most meaningful to addressing patient and/or family needs as they approach EOL.

Phase 2 will involve document analysis and semi-structured interviews with key informants from the top-ranked 15 programs to understand how programs work in various contexts.