Arthritis Wellness Program for Indigenous People – Haida Gwaii
Study Title: Development and pilot testing of a culturally sensitive and family-based self-management program for Indigenous Peoples with arthritis
Principal Investigator: Diane Lacaille, Senior Research Scientist of Rheumatology, MD, MHSc, FRCPC
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 and Associate Head Academic Affairs, Division of Rheumatology, Department of Medicine, University of British Columbia
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 being held November 2016 – February 2017.
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 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 relevant to Indigenous culture.
Our goals are 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 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 has been done?
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 arthritis understanding
- Optimize social support from family members
- Improve communication
- Strengthen coping skills with pain and other arthritis symptoms.
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.
Who was involved?
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 Old Massett Village – Haida Health Centre.
What was done?
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 a post program interview to share their personal experiences and responses related to the program.
Who is funding the research?
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 Coordinator, Arthritis Research Canada
Jade Collison, Community Health Representative, Haida Health Centre (Old Massett)
Monica Brown, Health Director, Haida Health Centre, Old Massett
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
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
Old Massett Village Council, Haida Gwaii
Arthritis Patient Advisory Board, Arthritis Research Canada
The Arthritis Society, BC & Yukon Division