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Arthritis Wellness Program for Indigenous People – Kwakiutl District Council
Rheumatoid-Arthritis-2.5-1
Scientific Study Title:
Development and pilot testing of a culturally sensitive and family-based self-management program for Indigenous Peoples with arthritis
Start Date:
  • 2011
End Date:
  • 2017
Research Category
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Why did we 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 wellness strategies that involve family members. We are partnering with several First Nations communities served by the Kwakiutl District Council, Vancouver Island to develop and evaluate a program to improve wellness in people with arthritis. Unlike other arthritis programs, this project involves family members and will be applicable to Indigenous culture.

Our goals are to:

  • Develop a culturally meaningful, family-based program for Indigenous people and family members to improve wellness when living with arthritis
  • Find out how well the program works in Indigenous communities
  • Improve the ability for care and research by Indigenous people for Indigenous people

What did we do?

Focus groups were held in the community with people who have arthritis and a family member to:

  • Determine preference for program topics and details or items
  • Identify the best program format and means of delivery, and,
  • Clarify use of skills and plans of action that are culturally relevant to Indigenous Peoples.
  • We used the information obtained from the focus groups to develop the culturally relevant, family-based wellness program, focused on topics such as management of arthritis
  • the importance of physical activity, diet, and nutrition
  • tips for food preparation
  • using traditional medicines
  • social support
  • effective communication
  • coping and emotional wellness.
  • We piloted the culturally relevant, family-based wellness program in 2016 and are evaluating how well the program supported wellness in people living with arthritis. Group meetings were held in the evening every two weeks for a total of six meetings. A light dinner was shared before the meeting, and each meeting lasted two hours. Surveys to collect information about health and feelings of pain, fatigue, social support, mood, control, and self-management were completed by participants with arthritis before and after the program and repeated six months later to help to evaluate their response to the program. People with arthritis also participated in an interview after the program to share their personal experiences and responses related to the program.

We have consulted with First Nations people with inflammatory and other types of arthritis and adult family members to make sure the program focuses on the issues important to them. Based on our consultations, the program is held with people with arthritis and their family members in a group wellness 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.

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

Principal Investigator

  • Diane Lacaille, MDCM, MHSc, FRCPC, Scientific Director, Arthritis Research Canada (University of British Columbia)

Co-investigators

  • John Esdaile, MD, MPH, FRCPC, FCAHS, MACR, Scientific Director Emeritus, Arthritis Research Canada (University of British Columbia)
  • Catherine Backman, PhD, FCAOT, Senior Scientist, Rehabilitation, Arthritis Research Canada (University of British Columbia)
  • Linda Li, BSc(PT), MSc, PhD, FCAHS, Senior Scientist, Implementation Science, Arthritis Research Canada (University of British Columbia)
  • J. Antonio Avina-Zubieta, MD, MSc, PhD, FRCPC, Senior Scientist, Rheumatology, Arthritis Research Canada (University of British Columbia)
  • Patrick McGowan, PhD; Associate Professor, (University of Victoria)
  • Deborah Da Costa, PhD, Research Scientist, Psychology, Arthritis Research Canada (McGill University)

Research Staff

  • June Kaminski; Research Coordinator, Arthritis Research Canada
  • Linda Lavender, RMT; Arthritis Program Coordinator, Kwakiutl District Council Health Centre (First pilot)

Collaborators

  • Kim Roberts, Health Director, Kwakiutl District Council Health Centre
  • Matthew Liang, MD, MPH, Professor Emeritus, Rheumatology, Arthritis Research Canada (Harvard)
  • 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
  • Phyllis Jorgensen, Health Director, Kwakiutl District Council Health 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?

Canadian Arthritis Network and the Arthritis Society, BC/Yukon Division

How Can People Get Involved?

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.

Ten Indigenous adults with arthritis who lived in the Kwakiutl District and an adult family member were recruited to attend the six group meetings of the Arthritis Wellness Program, led by the Arthritis Liaison for the Kwakiutl District Health Centres.

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