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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:
  • Phase I began in March 2011
End Date:
  • 2017. Phase II began in September 2014; Pilot study held April – June 2016; Second Pilot being held in the spring of 2017.
Research Category
Tags
Diane Lacaille-Website Headshot-400x400
Diane Lacaille
MDCM, MHSc, FRCPC, Scientific Director, Rheumatology
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John Esdaile
Scientific Director Emeritus, MD, MPH, FRCPC, FCAHS, MACR
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Catherine Backman
Senior Scientist Emeritus, Rehabilitation, PhD, FCAOT
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Linda Li
Senior Scientist, Implementation Science, BSc(PT), MSc, PhD, FCAHS
J. Antonio Avina-Zubieta-Website Headshot-400x400
J. Antonio Aviña-Zubieta
Senior Scientist, Rheumatology, MD, MSc, PhD, FRCP
Deborah Da Costa-Website Headshot-400x400
Deborah Da Costa
Research Scientist, Psychology, PhD
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June Kaminski
Research Coordinator, RN, BSN, MSN, PhD Candidate
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Matthew Liang
Professor Emeritus, Rheumatology, MD, MPH

Why did we do this research?

Reason For 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?

Execution of Research

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.

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.

Phase II:

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.

What are the next steps?

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:

  1. Lack of access to culturally-relevant services
  2. Lack of family member involvement in health care

Phase I:

The Research Team

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

Kwakiutl District Council, Vancouver Island

Arthritis Patient Advisory Board, Arthritis Research Canada

The Arthritis Society, BC & Yukon Division

Who Funded This Research?

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

How Can People Get Involved?

Involvement

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.

Media and Infographics

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