By Cheryl Barnabe, Rheumatologist and member of the Métis Nation of Alberta
There were (pre-COVID) times when I would look around a room at a concert or restaurant and start my count – estimating how many people in the room have arthritis conditions, watching for any telltale signs of difficulties moving, or joint deformities. I contrast that to the count and my observations at an Indigenous gathering or event I’ve been invited to attend, where I easily double my estimates, and see how most affected, young and old alike, have suffered destructive disease. Arthritis affects Indigenous people disproportionately and care needs to extend beyond the simple selection of the next medication to try or the next referral to send. Understanding why the disparities exist, changing how we support and deliver arthritis care, and welcoming cultural approaches in the arthritis journey are all ways that arthritis condition wellness can be achieved.
What are the realities?
Determinants of health are the very basic building blocks for health and wellness, and include personal, social, environmental and economic factors. Colonization, that is the acts and policies of Canadian governments and institutions in the early formation of the country, has universally impacted these determinants for Indigenous peoples. Some examples of how colonization impacts Indigenous patients’ risk of arthritis includes legislation (the Indian Act) that nearly extinguished cultural practices that support health, and limitations in employment opportunities that may lead to work that increases the risk for injury leading to arthritis or results in environmental exposures that trigger autoimmunity.
Colonization has also impacted arthritis management. Western health systems have been imposed and they do not meet patient expectations and needs, nor provide safety from racism and stereotyping, so they are avoided. Arthritis patients will know how important a support network around you is; for Indigenous patients their support networks of family and friends are disrupted by the legacy of residential schools including the Sixties Scoop and violence against women and girls.
Another effect of colonization has also created an unlevel playing field between First Nations, Métis and Inuit population groups. First Nations persons with Status (registered as a Band member with the federal government) and Inuit people access medications and limited assistive devices through the federal non-insured health benefits program. This program is not offered to non-Status First Nations nor Métis peoples, despite arthritis being just as severe. Indigenous people in urban settings, displaced from their communities or having relocated to find new opportunities for their families, are frequently disconnected from social and economic community supports. These are harsh realities, faced each and every day by Indigenous people in Canada, that we must recognize and seek to understand, and ultimately take steps to advocate for change.
How can rheumatology care providers support equity for Indigenous patients?
There is an important difference between equality and equity – expecting the same outcomes when offering the same rheumatology services to a population that does not have the same risks for arthritis or hurdles in management is unrealistic. We need to strive for equity, that is making up for the baseline differences, in many aspects of access to care and quality of care.
Difficulties in accessing care are related to more than being located distant to arthritis care services. Primary care models for Indigenous people are fragmented and inadequately resourced, making it difficult for persons with symptoms to get to that first step of having arthritis recognized and then referred to the appropriate care providers. Requiring that a series of tests be completed before an appointment with a provider is scheduled creates a barrier for those living in communities without x-rays or labs. An expectation for frequent in-person reassessments may be inconvenient for those without transportation or who cannot miss work or classes. Poverty results in not being able to have constant phone or internet access, or only being able to intermittently pick up mail, so an appointment may be missed simply because patients were not aware of having an appointment. At times, an appointment cannot be kept, because there is a more emergent need to provide child or Elder care, or support the community and family with attending to a recent loss. Rheumatology care providers need to deliver their services in different ways to be more accessible, and to be flexible and understanding of what else is happening in the Indigenous patient’s life. This might be by collaborating with local healthcare teams, providing virtual care options for triage purposes or follow-up appointments, eliminating missed appointment fees and discharges from practice, and offering outreach clinics with walk-in appointments.
Providing a quality care interaction is critical to building trust with Indigenous patients and their community. Acts of racism in healthcare cannot be ignored any longer. Racism includes neglect of patients, holding stereotypes and assumptions, direct interpersonal aggression and abuse. It is also happening through the structures of healthcare that delimit who gets what service, how, and the quality of that service based on Indigenous identity. Rheumatology care providers are generally supportive of cultural approaches to support health and wellness, but are hesitant about their role in managing disease activity. How can it be different? An important first step is to inform yourself on the history of colonization in Canada, and the deeply unsettling and painful losses faced by the Indigenous population. In the rheumatology care setting, prioritize creating a connection with the patient before moving on to the reason for the visit. Get to know who they are first, and share some of who you are, and be respectful to build trust. Give the time needed for understanding the patient’s reality, for decision making, and follow up on commitments you make in the care interaction. Make this standard an expectation of your office staff, colleagues and trainees.
What role do Indigenous approaches to medicine and wellness play in the treatment of arthritis within Indigenous communities?
Arthritis care for Indigenous patients is not limited to medications or physical modalities, nor an individual focus. Whole health – emotional, spiritual, mental, and for family and community – are approaches in arthritis management. Connecting to the land and community, participating in traditional activities and ceremony, providing and receiving peer support, meeting with Elders and using traditional therapies complement and add to the overall approach to improve arthritis symptoms.
About the artwork:
12" x 12" Titled: bimaadiziwin ©Art of Annette Sullivan; maaskowishiiw fleur (2021)
Artist Annette Sullivan
Annette Sullivan is a professional Indigenous artist of Métis and First Nation heritages. Their colourful artwork portrays the stories of ancestors.
Their family is part of the historic Mushrat Métis community of the St. Clair River. “Muskrat” describes the Tribe, language, and the people, whose French-Canadian voyageur ancestors worked the fur trade along the waterways and tributaries of the Great Lakes. These men took Indigenous wives, and the unions melded ways that developed a unique culture in-and-of-itself, known as Métis; with its own style of music, art, dance, dress, food and spirituality.