Arthritis Wellness Program for Indigenous People – Haida Gwaii
Scientific Study Title:
Development and pilot testing of a culturally sensitive and family-based self-management program for Indigenous Peoples with arthritis
Study Start Date:
Phase I began in March 2011
Study End Date:
2017.
Phase II began in September 2014; Pilot study held February – May 2016; Second Pilot was held November 2016 – February 2017.
Why Did We Do This Research?
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 Peoples function best when the community is involved, but we know little about arthritis wellness strategies that involve family members. We are partnered 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 involved family members and was relevant to Indigenous culture.
Our goals were to:
- Develop a culturally relevant, 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 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
What Did We Do?
We have consulted with First Nations people with inflammatory and other types of arthritis and adult family members to make sure the program focused on the issues important to them. Based on our consultations, the program was held with people with arthritis and their family members in a group wellness program to:
- Improve arthritis understanding
- Optimize social support from family members
- Improve communication
- Strengthen coping skills with pain and other arthritis symptoms.
Phase I:
Who Was 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.
What Was Done?
Focus groups were held in the community with people who have arthritis and a family member to:
- Determine program topics and elements
- Identify the best program format and method of delivery, and,
- Clarify skills and strategies 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 arthritis management; the importance of physical activity, diet, and nutrition; food preparation tips; using traditional medicines; social support; effective communication; coping and emotional wellness.
Phase II:
Who Was Involved?
25 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 Old Massett Village – Haida Health Centre and were involved in pilot testing of the program. 29 people with arthritis, and family members were involved in evaluating the program for its feasibility and appropriateness. For 9 pairs, both had arthritis.
What Was Done?
We piloted the culturally relevant, family-based wellness program in 2016 and evaluated 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 a post program interview to share their personal experiences and responses related to the program.
What Did We Find?
Pilot testing revealed that the culturally sensitive, community-based Arthritis Wellness Program for First Nations people living with arthritis and family members was effective in improving key health outcomes and patient attributes. For example, participating in the program led to increased scores in self-efficacy (the confidence in one’s ability to deal with arthritis), effective consumer skills (better understanding of how to make informed healthcare choices and navigate the system to get healthcare needs met), distraction coping (reduced reliance on distraction techniques to manage pain), and patient activation (greater involvement in managing own health and having the skills to do so).
The evaluation of the program showed that it is feasible to deliver the Arthritis Wellness Program to people living with arthritis and family members, and participants were very satisfied with the intervention. The survey results showed that participants found the program’s components – including group discussions, information provided, hands-on activities, sharing experiences, and videos very useful. Participants were also very satisfied with the amount of information provided in the program, the group energy, comfort of the zoom, the session length and topic time, and food served. Interviews revealed that participants learnt a lot of new information, including new medications, medicinal plants, joint protection, and how to adapt activities for living well with arthritis. They also learnt self-care tips, such as the importance of getting a good night’s sleep, setting goals, and pacing themselves.
The Research Team
Principal Investigator:
Diane Lacaille, MDCM, MHSc, FRCPC, Scientific Director, Arthritis Research Canada (University of British Columbia)
Partnership:
Developed in partnership with Old Massett Village Council, Haida Gwaii, 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
Jade Collison, Community Health Representative, Haida Health Centre (Old Massett)
Collaborators:
Monica Brown, Health Director, Haida Health Centre, Old Massett
May Russ, Band Council Member and Health Committee member, Old Massett Village Council
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)
Community Partners:
Old Massett Village Council, Haida Gwaii
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
