Arthritis Self-Management Program for Aboriginal People – Haida Gwaii
Partnership: Developed in partnership with Old Massett Village Council, Haida Gwaii, British Columbia
Principal Investigator: Diane Lacaille, MD, MHSc, FRCPC; Mary Pack Chair in Arthritis Research; Senior Research Scientist, Arthritis Research Canada; Professor, University of British Columbia
Study start date: Phase I began in March 2011 / Study end date: Phase II began in September 2014
Why do this research?
The results of our research will improve arthritis care in a manner that meets the needs of Aboriginal communities. Aboriginal peoples in Canada (First Nations, Métis, Inuit) get arthritis more often and more severely than non-Aboriginal peoples. In Aboriginal communities, access to medical care is often poor. We know that Aboriginal communities function best when the community is involved, but we know little about arthritis management strategies that involve family members. We are partnering with several First Nations communities served by the Old Massett Village Council, Haida Gwaii to develop and evaluate a program to improve the arthritis management. Unlike other arthritis programs, this project will involve family members and will be relevant to Aboriginal culture. We will:
- Develop a culturally sensitive, family-based program for Aboriginal people and family members to improve arthritis self-management
- Find out how well the program works in Aboriginal communities
- Improve the ability for care and research by Aboriginal people for Aboriginal people
What has been found?
We previously worked with several BC First Nations’ communities. We identified who had arthritis and evaluated their access to care. We found that the key barriers to adequate care included:
- Lack of access to culturally-relevant services
- Lack of family member involvement in health care
What will be done?
We will consult with First Nations people with inflammatory arthritis and adult family members to make sure the program focuses on the issues important to them. Based on our consultations so far, the program will focus on persons with arthritis and their family members in a group self-management program to:
- Improve understanding of arthritis
- Optimize social support from spouse or family member,
- Improve communication
- Strengthen skills to cope with pain and other arthritis symptoms.
Phase I: We held three separate focus group discussions. The three groups were people with arthritis, family members of people with arthritis, and people with arthritis with their family members. We are using the information obtained from the focus groups to develop the culturally relevant, family-based program.
Phase II: We will run the culturally relevant, family-based program and evaluate how well the program improves the self-management of arthritis.
Who is funding the research?
This program is funded by the Vancouver Foundation, with partner funding from the Canadian Arthritis Network and the Arthritis Society, BC/Yukon Division.
Who is on the research team?
John M. Esdaile, MD, MPH, FRCPC, FCAHS; Scientific Director, Arthritis Research Canada; Professor of Medicine, Division of Rheumatology, Department of Medicine, University of British Columbia
Catherine Backman, PhD, OT(C), FCAOT; Professor and Head, Department of Occupational Science & Occupational Therapy, University of British Columbia; Research Scientist, Arthritis Research Canada
Linda Li, BSc (PT), MSc, PhD; Associate Professor, Department of Physical Therapy, University of British Columbia; Harold Robinson Chair / Arthritis Society Chair in Arthritic Diseases; Senior Research Scientist, Arthritis Research Canada
Antonio Aviña, MD, MSc, PhD; Research Scientist, Arthritis Research Canada; Assistant Professor, Department of Medicine, University of British Columbia
Patrick McGowan, PhD; Associate Professor, University of Victoria
Deborah Da Costa, PhD; Division of Clinical Epidemiology, McGill University
June Kaminski; Research Assistant, Arthritis Research Canada
Laura Therrien, Community Health Representative, Haida Health Centre (Old Massett)
Michelle Brown, Health Administrator, Haida Health Centre, Old Masset
May Russ, Band Council Member and Health Committee member, Old Massett Village Council
Matthew H. Liang, MD, MPH; Professor, Department of Health Policy and Management, Harvard School of Public Health; Associate Professor of Medicine, Harvard Medical School; Scientist Emeritus, Arthritis Research Canada
John O’Neil, MA, PhD; Professor and Dean, Faculty of Health Sciences, Simon Fraser University
Paul Adam, MSW; Rheumatology Liaison & Outreach Services Coordinator, Mary Pack Arthritis Centre
Joyce Greene, Aboriginal Consumer
Pam Montie, Consumer, Arthritis Patient Advisory Board, Arthritis Research Canada
Brenda Elias, BA, MA, PhD; Assistant Professor, Department of Community Health Sciences, University of Manitoba
Old Massett Village Council, Haida Gwaii
Arthritis Patient Advisory Board, Arthritis Research Canada
The Arthritis Society, BC & Yukon Division