Improving End-of-Life Care in First Nations Communities

This is all about the project entitled, Improving End-of-Life Care in First Nations Communities: Generating a Theory of Change to Guide Program and Policy Development.

Through this research, First Nations health care providers will be empowered and supported to be catalysts for community change in developing local palliative care programs. Using a four phase conceptual model to guide the change process, providers in the site communities will choose a series of clinical, educational or administrative interventions to build local capacity. Each intervention will be implemented and evaluated for its contribution to developing palliative care.

The knowledge created by this research will be a tool kit of interventions for implementing palliative care in First Nations communities nationally and a culturally appropriate theory of change to guide program and policy development. Such theories of change are currently lacking, limiting the ability to evaluate the processes and outcomes of capacity development and create health services and policies consistent with a capacity development approach.

A local project advisory committee was developed in each community to ensure local control and lead the implementation of the project. The committee also ensures that the research project addresses the needs of the community and is respectful of the culture. Letters of commitment were received from over 30 regional, provincial and national partners. To date, community needs assessments have been completed in all four First Nations communities.

The research project follows the principles of OCAP (Ownership, Control, Access and Possession), which are sanctioned by the First Nations Information Governance Committee and the First Nations Regional Longitudinal Health Survey, to ensure self-determination in all research concerning First Nations. The methodology is based on community capacity development and takes a participatory action research (PAR) approach.

The project’s research team from Lakehead University’s Centre for Education and Research on Aging & Health was awarded a five year (2010-2015) Canadian Institutes of Health Research, Aboriginal Health Intervention, operating grant of $1.825 million.

The research is conducted with four partnering First Nations communities: Fort William First Nation, Ontario; Naotkamegwanning First Nation, Ontario; Six Nations of the Grand River Territory, Ontario and Peguis First Nation, Manitoba.

The project team consists of eight researchers: Dr. Mary Lou Kelley, Principal investigator, Lakehead University; Dr. Kevin Brazil, Queen’s University, Belfast, Ireland; Dr. Mary Hampton, University of Regina; Gaye Hanson, Hanson and Associates; Mae Katt, CRaNHR, Lakehead University; Dr.Bruce Minore, Lakehead University; Valerie O’Brien, McMaster University; Holly Prince, CERAH, Lakehead University and community leads from the four First Nations partner sites: Karen Bannon and Luanne Maki, Fort William First Nation; Maxine Ranville, Naotkamegwanning First Nation; Lori Monture and Verna Fruch, Six Nations; and Jeroline Smith, Peguis First Nation. Anishinabek Family Care and the Kenora Chiefs Advisory are collaborators on the project.