Building capacity in health systems with and for caregivers: A photovoice protocol

Unpaid caregivers-those who provide essential support to family, friends, or neighbours with disabilities, chronic conditions, mental health, or other health concerns-play a critical role in sustaining Canada's health and social systems. Despite their significant contributions, caregivers remain undervalued, under-recognized, and under-supported. This marginalization has led to elevated rates of burnout, mental health distress, and financial strain, disproportionately impacting women and racialized populations. The COVID-19 pandemic further revealed the systemic risks and potential harms of excluding caregivers from care environments (e.g., hospitals, long-term care settings), prompting urgent calls for reform. This Photovoice study forms part of a broader four-year research program engaging caregivers from diverse communities to co-develop evidence and advocacy tools to support best practices in healthcare for engaging caregivers and inform a new Research and Innovation Hub focused on caregiving.

Using a community-based participatory research (CBPR) approach, a series of Photovoice workshops will be conducted with four priority caregiver groups in Peel Region, Ontario: (1) caregivers of children with complex care needs; (2) caregivers of seniors; (3) caregivers supporting young adults with mental health challenges; and (4) women caregivers supporting multiple generations. Each group will participate in six virtual workshops focused on photo taking, narrative development, collaborative theming, and advocacy planning. The study foregrounds caregivers as co-researchers, not just participants, and integrates inclusive research practices including compensation, ongoing consent, check-ins, and other supports throughout the process. Data will be collaboratively analyzed with participants to identify cross-cutting themes and policy and practice recommendations. A follow-up qualitative evaluation will assess co-researcher participants' experiences with the method and its impact.

This study centers caregiver perspectives, experience, and expertise to inform responsive health system change. Employing CBPR and Photovoice principles will help to amplify caregiver voices and generate actionable knowledge aimed at addressing structural inequities in caregiving policy and practice.