Transforming Care Through Co-Design: Developing Inclusive Caregiver-Centered Education in Healthcare

Background: Family caregivers provide most (75-90%) of the essential unpaid care and support for individuals living with chronic conditions, disabilities, and age-related needs in the community, with about half performing medical tasks traditionally performed by professionals. Caregivers also assist with 15 to 35% of the care in congregate care settings. Yet despite their critical contributions to patient care, caregivers face stress, declining well-being, and insufficient recognition in healthcare systems. Addressing these challenges requires innovative, person-centered approaches to training healthcare providers. Co-design or co-production are participatory research methods that involve individuals with lived experience to ensure relevance and impact. Objective: This study sought to understand how participatory co-design principles influenced learning, collaboration, and engagement among diverse participants in developing a caregiver-centered education program for healthcare providers. Actionable recommendations for optimizing co-design processes are provided. Methods: Eighty-five participants from a team of 155 collaborators, including caregivers, healthcare providers, educators, policymakers, and leaders, participated in ten focus group sessions conducted in Zoom breakout rooms. Interviews were transcribed verbatim and analyzed using Thorne's interpretive description and Braun and Clarke's reflexive thematic analysis. Results: Participants described the co-design process as fostering collaboration, inclusivity, and skill enhancement. Exposure to diverse perspectives expanded transformative understanding and prompted reflection on caregiver support within professional practices. Skilled facilitation ensured equitable engagement. Challenges included information overload and personal time constraints. Participants liked using breakout rooms to mitigate the dynamics of large group management. Still, they recommended pre-meeting materials, flexible scheduling, and expanding stakeholder diversity (e.g., rural, Indigenous, and immigrant caregivers). Conclusions: Co-design fosters meaningful, caregiver-centered education through collaboration and inclusivity. Addressing logistical challenges and representation gaps can further enhance the impact of co-design and empower multi-level, interdisciplinary partners to inform equitable healthcare education.