Chronic pain is often misunderstood and poorly managed in the general population. For people with pain who experience stigma and marginalization, support for effective pain management is often even harder to access. Pain BC has been working with researchers from the University of British Columbia and University of Victoria to learn ways to build trust and improve care for people living with chronic pain who also experience social marginalization.
As part of this work, our team held four focus groups December 2018 – March 2019, with people from groups known to experience stigma and barriers to healthcare, including an Indigenous group, an LGBTQ2S group, and two newcomer and refugee groups. All 36 participants were adults living with chronic pain in BC. We then held a one-day workshop in March 2019 with a small number of participants from each focus group, Pain BC staff, the researchers, and staff from organizations that provide services to people living with pain who experience marginalization. Together, workshop participants reviewed the findings from the individual focus groups and brainstormed ways to minimize and remove barriers to care and support.
Improving the way Pain BC serves people who experience marginalization is a continuing process. Here are some of the things it is doing:
What we heard: “I don’t see anyone who looks like me on Pain BC’s website or brochures.”
What we are doing: Pain BC conducted a Diverse Portraits project to ensure it has photos of a wide range of real people with pain for its website and print materials. They recruited people in pain who identified as Indigenous, LGBTQ2S and/or as newcomers or refugees, and engaged them in focus groups to learn about the types of people, activities and settings that would appropriately reflect and appeal to people like themselves. Next, they recruited people in pain from those communities who were willing to have their photos taken. The pictures you see on this website come from that collection!
What we heard: “Even well-intentioned caregivers and service providers can say or do things that make people who experience marginalization feel unseen, unheard and unsafe.”
What we are doing: Pain BC is developing online training modules on diversity, equity and inclusion with an expert consultant with lived experience of marginalization. Pain BC’s staff, approximately 140 current volunteers, and all future Pain BC volunteers, will be required to complete the training to learn about systemic oppression, inclusive language, and reducing barriers to equitable health services. Pain BC staff also completed the San’yas: Indigenous Cultural Safety Training Program.
What we heard: “Some people living with pain who experience social marginalization will not go to in-person chronic pain self-management classes because they do not expect that it will be a safe environment.”
What we are doing: Pain BC is developing an online chronic pain self-management course built on the principles of inclusion and equity. People living with pain who identify as Indigenous, LGBTQ2S, or as a newcomer or refugee are part of the advisory group that is helping to ensure the needs of people who experience marginalization are addressed in the development of the course curriculum and delivery. The course is expected to launch in 2021.
What we heard: “People living with chronic pain are routinely stigmatized as “drug seeking,” especially people who are identified by health care providers as Indigenous or living in poverty.”
What we are doing: Some of the researchers from this team and Pain BC are collaborating on a project funded by the Public Health Agency of Canada to tackle substance use stigma. One of the main products of the project will be an on-line learning module that helps health care providers learn about the relationships among trauma, violence, chronic pain, substance use and stigma.
What we know: Attention to chronic pain in health care often focuses on medical treatment such as medications, and overlooks the experiences of people living in marginalizing conditions.
What we are doing: Members of the research team are advocating for change on these issues through the Canadian Pain Task Force.
What we know: Very little research has been done with people in pain who identify as part of a marginalized group and so very little is known about how best to meet their needs.
What we are doing: The project team of researchers and Pain BC staff have published their first paper, “Pain in persons who are marginalized by social conditions,” in the journal PAIN. A second paper, providing an overview of the findings from the focus groups, has been submitted to another journal. We will post a summary when it is published. Additional papers are planned to further share what the team learned from this project.
If you have questions about Pain BC’s diversity and inclusion initiatives, please contact Project Manager Gregg Moor at firstname.lastname@example.org or 604-961-6556.
Funding for this work has been provided in part by grants from the Social Sciences and Humanities Research Council of Canada (Partnership Engage Grant) and the Michael Smith Foundation for Health Research (Convening and Collaborating Grant).