Advancing Patient-Centered Care in Young People Living with Chronic Pain

Chronic pain is a common, serious and poorly understood problem among young people. Moreover, living with chronic pain is so much more than the pain itself. A wide range of domains may be affected by chronic pain including sense of self, relationships, physical functioning and sleep, mood, mental health, school and work. COVID-19 has further exacerbated the challenges experienced by young people with chronic pain (YCP). While living with chronic pain can have a tremendous toll on a young person, YCP voice that their experience is not understood. If we hope to improve care for YCP that is patient-centered, it is essential we engage YCP in research. The aim of this patient-oriented national study is to advance patient-centered care for YCP with an emphasis on YCP delineating their experiences, needs, priorities for care and preferred outcome. YCP will also co-design arts-based knowledge translation (KT) products to advance key stakeholders' (e.g., parents, YCP, health and social service providers) understanding of the experiences of YCP. YCP across Canada will take part in individual interview and arts-based methods. Integrating creative arts-based methods with qualitative approaches will afford the opportunity and space for YCP to articulate their multifaceted nature of their experiences. Key stakeholders from across Canada will be engaged in a series of focus groups to garner their recommendations on the use of arts-based KT products to advance patient-centered care for YCP. Adopting a patient-oriented approach that includes YCP as co-researchers and arts-based approaches is innovative and a necessary first study for this research program. Short-term, advanced understanding of the experiences of YCP including their needs, priorities for care and preferred outcomes will emerge. Long-term, the next steps in the research program includes developing as well as scaling-up and testing supports and services for YCP that are grounded in the experiences of YCP.