Power Over Pain for Primary Caregivers: Co-Designing Virtual Solutions for Primary Caregivers of Children with Chronic Pain
Primary caregivers of young people with chronic pain often face chronic stress, relationship challenges, and poor physical and mental health, which can significantly impact their child’s outcomes and overall family functioning. This international research project addresses these challenges by developing evidence-based, caregiver-focused virtual solutions that promote psychological health, well-being, and caregiving skills.
Building on the success of the Power over Pain (PoP) portal—a CIHR-funded initiative providing psychological pain interventions for young people with chronic pain, this project focuses on creating complementary solutions for primary caregivers. Using a user-centered design approach, primary caregiver partners are authentically engaged at every step to understand their needs, identify existing solutions and, and co-develop tailored virtual resources.
Through qualitative needs assessment interviews, a scoping review, and a collaborative consensus conference, this project will lay the foundation for accessible, virtual stepped-care solutions that improve caregiver health and empower them in their caregiving role. These interventions aim to enhance primary caregiver and family well-being, support caregiving confidence, and improve outcomes for primary caregivers and children with chronic pain.
This research is made possible by a global collaboration with primary caregiver partners, healthcare professionals, and organizations dedicated to improving care for families. Our ultimate goal is to transform chronic pain care for families through innovative, caregiver-centered approaches.
Scoping Review and Evidence and Gap Map
A co-designed scoping review with primary caregiver partners resulted in an interactive Evidence and Gap Map (EGM) showcasing 73 virtual care solutions across a stepped-care continuum. While most interventions focused on psychological strategies, significant gaps were found in addressing caregivers’ physical health, family counseling, and practical support. This EGM highlights ready-to-scale solutions and critical gaps, emphasizing the need for family-centered, accessible, and equitable approaches co-developed with caregivers.