My research has been continuously funded since 2014 through Tri-Council grants from the Social Sciences and Humanities Research Council (SSHRC) and the Canadian Institutes of Health Research (CIHR), all of which focus on chronic pain and marginalization. The acronym for this work, COPE, stands for chronic osteoarthritis pain ethnography. The overall aim of COPE is to apply the tools, theories, and insights of sociology to explore and improve the care of people who live with chronic pain and other health conditions. I have approached my work in three distinct stages. COPE I 2014-2019 explored chronic pain management from the standpoint of primary care physicians. COPE II 2019-2023 turned to explicating and understanding the patient standpoint in relation to chronic pain. For COPE III, 2021-2023, I then received funding to explicitly focus on the pandemic to explicate how people’s activities are coordinated in relation to newly imposed social restrictions. Each stage of COPE led into the new area of focus. I refer to my recent SSHRC funded $2.4 million Partnership grant, “Toward democratization of health: a sociological exploration of patient engagement in pain research”, as COPE IV, 2022-2027. It represents my growth into leading an extremely large national and international Partnership that is based on expanding critical and interdisciplinary scholarship in the area of chronic pain and social justice in the area of health.
COPE I: 2015 – 2019
AN INSTITUTIONAL ETHNOGRAPHY OF CHRONIC PAIN MANAGEMENT IN FAMILY MEDICINE.
COPE I explores the social organization of primary care for people with chronic pain from the perspectives of primary care providers in Ontario. Findings from this research indicate many people who live with chronic pain also tend to struggle with poverty, poor mental health, and addiction – particularly to opioids. Furthermore, my team and I found significant distance and disjuncture between clinical understandings of medical complexity on the one hand, and the social complexity of peoples’ lives on the other. In particular, we found that while primary care clinicians seek to offer the best care, they are often constrained by the parameters of a health care system that assumes people have resources such as food and housing security. When physicians did know of these struggles, they lacked the personal and institutional capacity to address them.
This study was generously funded by the Canadian Institutes for Health Research (CIHR).
COPE II: 2019 – 2023
AN INSTITUTIONAL ETHNOGRAPHY OF MENTAL HEALTH, ADDICTIONS AND POVERTY IN THE LIVES OF PEOPLE WITH CHRONIC PAIN
The natural evolution of my work relates to now explicating and understanding peoples’ standpoint in relation to chronic pain, which is crucial given the current opioid crisis. Specifically, COPE II focuses on a subset of people living with chronic pain that my prior (COPE I) research has identified as the most challenging for primary care providers to effectively treat: people struggling with poverty, and thus with few personal resources to mobilize in their struggles with chronic pain. Here, my team and I aim to understand the experiences of people living with chronic pain who struggle to make ends meet to better understand how their “work” is hooked into and organized by the same institutional priorities that organized the experiences of physicians, which we explored in COPE I.
This study is generously funded by the Canadian Institutes for Health Research (CIHR).
Learn about COPE II
COPE II Pandemic Study: 2021-2023
Chronic pain and poverty in a time of pandemic
The pandemic drew attention to the importance, failings and weaknesses of the public health system in promoting and maintaining health for all, especially marginalized groups and those living with serious chronic conditions. Governments and health care systems are mobilizing to find ways to minimize the downstream impacts of the pandemic on its citizens. This project examines how people living with chronic pain persevere during the time of COVID-19. It builds on my existing COPE II study that takes up the standpoint of people who experience chronic pain, mental health, addiction and poverty.
This study is generously funded by the Canadian Institutes for Health Research (CIHR).
PEPR Partnership: 2022 – 2027
PARTNERSHIP FOR THE ENGAGEMENT OF PATIENTS IN PAIN RESEARCH
PEPR is a 5-year, multi-disciplinary, multi-sector, multi-province project to build sustainable connections and generate new insights regarding meaningful engagement that better reflect the needs and knowledges of people living with chronic pain and marginalization through principles of equity, diversity, and inclusion (EDI), and work toward improving social and health equity. Using sociologically oriented and decolonizing theoretical and methodological approaches that are embedded in, and guided by, institutional ethnography, the work of the Partnership will proceed in 3 linked stages:
- undertake community consultations to create a strong foundation for the establishment of a Participant Engagement Research (ParE) Hub
- launch and sustain the Hub
- conduct at least four multi-year studies that critically approach ParE from various angles
Projects will generate new co-created knowledge to apply to developing, implementing, and evaluating tools and guidelines.
This partnership has been generously funded by a grant from the Social Sciences and Humanities Research Council (SSHRC), 2022-2027.
Learn about PEPR
FIONA WEBSTER, PhD 