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Arthritis Self-Management Program for Indigenous People – Haida Gwaii
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Why do this research?

The results of our research will improve arthritis care in a manner that meets the needs of Indigenous communities. Indigenous peoples in Canada (First Nations, Métis, Inuit) get arthritis more often and more severely than non-Indigenous peoples. In Indigenous communities, access to medical care is often poor. We know that Indigenous 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 Indigenous culture. We will:

  • Develop a culturally sensitive, family-based program for Indigenous people and family members to improve arthritis self-management
  • Find out how well the program works in Indigenous communities
  • Improve the ability for care and research by Indigenous people for Indigenous people

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.

What did we find?

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

The Research Team

Co-investigators

  • 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

Research Staff

  • June Kaminski; Research Assistant, Arthritis Research Canada
  • Laura Therrien, Community Health
  • Representative, Haida Health Centre (Old Massett)

Collaborators

  • 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, Indigenous 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

Who Funded This Research?

This program is funded by the Vancouver Foundation, with partner funding from the Canadian Arthritis Network and the Arthritis Society, BC/Yukon Division.

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