Indigenous peoples around the world face unjust health differences – including those related to arthritis care and treatment. In Canada, researchers have found that Indigenous populations face higher rates of arthritis and more severe symptoms than those who are non-Indigenous.
More specifically, Indigenous peoples in Canada experience:
- Higher rates of inflammatory arthritis such as lupus, rheumatoid arthritis and ankylosing spondylitis1.
- Higher rates of death from lupus and its complications compared to White patients2.
- Worse disease outcomes in early rheumatoid arthritis compared to White patients. This means slower improvements in pain and swelling and less likelihood of achieving remission (i.e., getting the disease under control)3.
Higher rates and severity of arthritis makes effective healthcare and treatment especially important. However, research has found many barriers that prevent Indigenous peoples from accessing these services.
Geographical barriers
Firstly, there are certain geographical barriers related to where people live and the location of healthcare providers. For example, patients living on reserve, and/or in rural communities often have to travel a long way in order to receive specialist care. Specialist arthritis care includes appointments with rheumatologists and other health professionals such as occupational therapists or physiotherapists. They are most often located in bigger cities. Transportation can be long, expensive and made more difficult by bad weather4.
A study conducted by researchers from the University of Calgary uncovered that there are also important social contexts which impact access to care among Indigenous populations5. The researchers interviewed Indigenous arthritis patients as well as a variety of healthcare professionals in Alberta, Canada. Although the study is limited in size, it provides critical insight about barriers to arthritis care and has helped inform a number of other projects in the area. Key findings are outlined below.
“Toughing out” arthritis and other life challenges
Many patients in this study would “tough out” arthritis symptoms due to past experiences of racism in healthcare and/or because of other life challenges that they were dealing with. Some participants were living with serious health conditions such as cancer or supporting family and friends who were struggling with addiction, mental health issues or other diseases. Choosing to prioritize the needs of family, friends and community meant that some participants waited longer to see an arthritis specialist or would sometimes miss appointments.
The authors of the study emphasize that although this may prevent individuals from seeking healthcare, “toughing out” painful life events and putting family and community first “are among those that have kept Indigenous peoples resilient in the face of repression, oppression and repeated attempts to assimilate them” 5 (Page 8).
Harmful disconnect between providers and their patients
A key issue that emerged in this study was that healthcare providers often felt frustrated and made assumptions about why patients missed appointments or waited so long to seek specialist care. Providers tended to believe that Indigenous patients didn’t “buy in” to arthritis care and that personal actions or inactions resulted in more severe symptoms. Providers tended to assume that patients didn’t know enough about arthritis, didn’t value appointments with specialists or couldn’t overcome material barriers to attend them (such as transportation).
The researchers argue that these assumptions, even if well intentioned, can be very harmful. For one, they contribute to tension between provider and patient, impacting their relationship from the first appointment. Furthermore, they reinforce negative stereotypes about Indigenous peoples by assuming weakness in Indigenous individuals and their communities. These negative experiences impacted participant’s decisions to seek further care. The authors conclude that “the assumptions made by providers lead to stereotyping and racism and reinforce rejection of healthcare by patients” 5 (Page 1).
Implicit racial biases: The healthcare providers in this study showed implicit racial bias. This refers to unconsciously making assumptions about someone based on their race. In other words, we learn certain stereotypes throughout our lives, and then unconsciously associate them with people that we meet. We all have implicit biases that exist without our knowledge. However, it is our responsibility to pick-out these biases and un-learn them. This is especially important for careers that put us in a position of power (such as a police officer, healthcare provider, educator, politician) because these biases can deeply impact others.
Improving the system
This study, among others, has shown that improving equity requires more culturally safe environments in healthcare. For many years, researchers have been working with healthcare providers and Indigenous communities to help develop more of these spaces and improve access to care.
For example, researchers at Arthritis Research Canada have partnered with Indigenous communities in Haida Gwaii as well as those served by the Kwakiutl District Council on Vancouver Island6,7. Their goal is to develop and evaluate an Arthritis Wellness Program that is family-based and culturally meaningful for people living with arthritis and their families. Dr. Diane Lacaille, principle investigator, speaks about the Arthritis Wellness Program in this #CRArthritis interview.
Go deeper – Dr. Cheryl Barnabe is one of the lead researchers in the access to care study, among other studies cited in this piece. She is a Senior Research Scientist of Arthritis Research Canada and Associate Professor in the Departments of Medicine and Community Health Sciences at the University of Calgary. Dr. Barnabe is working to incorporate equity into Canada’s Rheumatology Care Guidelines. This is an important step towards meeting the healthcare needs of diverse patient groups instead of a “one size fits all” approach. Indigenous peoples are included as a key population group in this project. Learn more in this #CRArthritis interview.
Researchers commonly state that social determinants of health (such as race/racism, income and access to resources) are a critical part of explaining health inequalities. To learn more about social determents of health read ACE’s first Health Inequities in Arthritis article.
References
- C. McDougall, K. Hurd, C. Barnabe Systematic review of rheumatic disease epidemiology in the indigenous populations of Canada, the United States, Australia, and New Zealand. Semin Arthritis Rheum, 46 (5) (2017), pp. 675-686
- K. Hurd, C Barnabe. Mortality causes and outcomes in Indigenous populations of Canada, the United States, and Australia with rheumatic disease: a systematic review. Semin Arthritis Rheum, 47 (4) (2018), pp. 586-592
- Nagaraj, S., Barnabe, C., Schieir, O., Pope, J., Bartlett, S. J., Boire, G., Keystone, E., Tin, D., Haraoui, B., Thorne, J. C., Bykerk, V. P., & Hitchon, C. Early rheumatoid arthritis presentation, treatment, and outcomes in aboriginal patients in canada: A canadian early arthritis cohort study analysis. Arthritis Care & Research, 70(8) (2018). 1245–1250. https://doi.org/10.1002/acr.23470
- Lehman, L., Avina-Zubieta, A., Peschken, C. Narrowing the Gap: Experiences with Indigenous Peoples in Canada. Arthritis Research Canada. (2010). https://www.arthritisresearch.ca/videos/lupus-conference/narrowing-the-gap-experiences-with-indigenous-peoples-in-canada/
- Thurston, W. E., Coupal, S., Jones, C. A., Crowshoe, L. F., Marshall, D. A., Homik, J., & Barnabe, C. Discordant indigenous and provider frames explain challenges in improving access to arthritis care: A qualitative study using constructivist grounded theory. International Journal for Equity in Health, 13(1) (2014) https://doi.org/10.1186/1475-9276-13-46
- Lacaille, D. et al. Arthritis Wellness Program for Aboriginal People – Kwakiutl District Council. Arthritis Research Canada. (2017) https://www.arthritisresearch.ca/research/arthritis-wellness-program-for-aboriginal-people-kwakiutl-district-council-2/
- Lacaille, D. et al. Arthritis Wellness Program for Aboriginal People – Haida Gwaii. Arthritis Research Canada (2017). https://www.arthritisresearch.ca/research/arthritis-wellness-program-for-aboriginal-people-haida-gwaii-2/