Self-Management Support for Underserved Populations with Arthritis and Co-Morbidities
Study Title: Understanding the Barriers to Self-Management Support for Underserved Populations Living with Arthritis and Co-morbidities and Developing Patient-derived Tools for Healthcare Policy and Practice
Principal Investigator: Diane Lacaille, Senior Research Scientist of Rheumatology, MD, MHSc, FRCPC
Study Start Date: 2017 Study End Date: 2018
Why do this research?
People with chronic diseases and arthritis use self-management support programs and services to improve their health and manage their illnesses. However, these self-management approaches do not meet the needs of people living with arthritis in underserved and vulnerable circumstances in British Columbia.
What will be done?
This study will bring together research partners from relevant community organizations and people with arthritis and co -morbidities. They will participate in four workshops held over a 9-month period. During the workshops, they will design a process to identify the barriers to using self-management supports and define ways to reduce those barriers. The participants will use the process of ‘concept mapping’ to organize and analyze everyone’s ideas to produce visual maps. They will use the visual maps to determine which barriers to focus on and to find solutions that may be effective. We will support the participants in all aspects of the process and give them continuous training throughout the development of concept mapping. We will use the results of this study to develop policy and education tools that aim to improve quality of care and to revise a BC strategy for self-management support for underserved populations.
Who is involved?
The inclusion criteria for research participants are:
- Being diagnosed with arthritis and at least one other chronic disease for more than 2 years;
- Over 19 years of age;
- Ability to speak, read and write English;
- Ability to travel to/from face-to-face workshops;
- Be a self-reported member of an underserved population (defined for this study to include: racial/ethnic minorities, immigrants, refugees, low-income adults, older adults, homeless people, rural residents, and Indigenous populations).
How do people get involved?
We will send our letter of engagement to community-based organizations that work with the underserved populations (racial/ethnic minorities, immigrants, refugees, low-income adults, older adults, homeless people, rural residents, and Indigenous populations). We will meet with at least one organization that addresses each of these populations (some organizations might serve more than one of these groups) and seek their interest in engaging in our research process. Specifically, we will be seeking advice on the best method for recruiting 1-3 research participants within their specific communities. We have created a recruitment flyer that these community-based organizations can post within their community setting, if this is deemed to be the most effective and appropriate approach for their population. Once potential individuals are identified, they will have to contact the research associate directly to confirm interest in the study and to be screened for eligibility.
Who is on the research team?
Sue Mills, PhD, MHSc. Clinical Professor, School of Population and Public health, Faculty of Medicine, University of British Columbia
Sharon Koehn, PhD, MA. Clinical Research Professor, Department of Gerontology, Simon Fraser University. Research Associate, Providence Health Care
Guillermina Perez Flores, MD. Medical Resident, Family Medicine, University of British Columbia
Nancy Clark, RN, MSc, PhD. Faculty and Clinical leader for mental health addictions nursing, Vancouver Community College
Cherly Koehn, Founder and President, Arthritis Consumer Experts
Connie Davis, MN, ARNP (WA), RN (BC & WA), GNP-BC (US), Adjunct Faculty, University of British Columbia. Co-Director, The Centre for Collaboration, Motivation and Innovation
Maylene Fong, BSN, MSN, Adjunct Professor, School of Nursing, University of British Columbia. Manager, Home Health & Bridge Refugee Clinic, Vancouver Coastal Health
Angela Louie, Coordinator, Rehabilitation & Recovery, Mental Health & Substance Use Services, Fraser Health
Brendan van As, BSc, MPH. Research Assistant, Arthritis Research Canada
Adeline Cui, University of British Columbia
Who is funding this research?
Canadian Initiative for Outcomes in Rheumatology Care (CIORA)