Unpaid caregivers provide essential support to family, friends, or neighbours with disabilities, chronic conditions, mental health needs, or other health concerns and are foundational to Canada’s health and social systems. Despite contributing billions of hours and economic value annually, caregivers are frequently undervalued, under-recognized, and under-supported. This marginalization contributes to elevated burnout, mental health distress, and financial strain, with disproportionate impacts on women and racialized populations. The COVID-19 pandemic exposed systemic harms from excluding caregivers from care environments and reinforced calls for reforms that recognize and integrate caregiver roles.
Photovoice is proposed as an arts-informed, participatory method well suited to capturing contextualized lived experience and surfacing local knowledge to inform advocacy, policy, and practice change. This protocol positions caregivers as co-researchers, not merely participants, to co-produce evidence and recommendations aimed at addressing structural inequities in caregiving policy and practice.
This Photovoice study is a foundational element of a broader four-year research program conducted in collaboration with the Canadian Centre for Caregiving Excellence. Program-level objectives include: 1) co-designing policy and practice recommendations by understanding caregivers’ lived experiences; 2) mobilizing lived expertise to amplify caregiver voices for system change; 3) co-designing an implementation toolkit to help health and social systems adopt best practices for caregivers; and 4) establishing a Research and Innovation Hub focused on caregivers’ roles in health and social systems. The Photovoice protocol specifically aims to run workshop series, generate a Photovoice gallery and themed analysis, and inform knowledge translation and advocacy outputs.
Photovoice will be conducted as a series of collaborative group workshops in which co-researchers take photographs or select images in response to a guiding research topic. The method foregrounds visual narrative and collective meaning-making, with an explicit advocacy and action orientation. The team will follow established Photovoice and CBPR best practices to enable self-expression, support group learning, and create opportunities for advocacy. Outputs will include a co-created gallery and collaboratively derived themes that highlight promising practices, gaps, and priorities for systems change.
A CBPR orientation guides the study’s structure and engagement practices. CBPR tenets applied include equitable involvement of community members in decision-making, integration of academic and community knowledge, and a flexible iterative process across the research cycle. Best practices for public engagement will be observed: meaningful contributions to research activities and training, inclusion in dissemination (including co-authorship opportunities), and appropriate compensation.
A Community Advisory Board (CAB) was formed in September 2024, composed of current and former caregivers with experience across child, adult, and older adult care contexts and with backgrounds in community services, advocacy, and health-system roles. The CAB will advise recruitment, workshop design, and knowledge translation activities. CAB members receive an annual stipend and serve one-year terms with the option to renew during the four-year program period.
The study is based at Trillium Health Partners, a large community and academic teaching hospital operating a rapid-learning health system model in Peel Region, Ontario. Peel is one of Canada’s most diverse regions, with a majority of residents born outside Canada and a high proportion of racialized population groups. The local demographic context is presented as an opportunity to engage caregivers from diverse communities to inform locally and nationally relevant caregiver strategies. The protocol notes that although maximum variation sampling will be attempted, final sample composition will depend on who expresses interest and is able to participate.
General eligibility: co-researchers must reside in Peel Region and be over 16 years old. There is a preference for comfort conversing in English due to workshop complexity; however, translation will be facilitated by an interpreter if a pre-established group prefers another language or if an individual requests support and the team can accommodate.
Group-specific criteria:
The protocol specifies purposive sampling with a maximum variation approach to recruit caregivers representing a range of identities and caregiving contexts. Recruitment strategies and final eligibility refinements will be informed by the CAB and community consultations. The protocol cautions that the final sample will reflect who expresses interest and can participate and may not mirror Peel Region’s full population distribution.
Each priority caregiver group will participate in six virtual workshops covering photo taking or image selection, narrative development, collaborative theming, and advocacy planning. The process emphasizes inclusive practices: co-researchers are recognized and compensated through stipends; ongoing consent and check-ins are integrated; and supports (including interpreter assistance where feasible) are offered to reduce barriers to participation. The Photovoice activities intentionally centre caregiver expertise in analysis and dissemination.
Data generated through workshops (images, narratives, and thematic outputs) will be collaboratively analyzed with co-researchers to identify cross-cutting themes and develop policy and practice recommendations. The protocol states that a follow-up qualitative evaluation will assess co-researchers’ experiences with the Photovoice method and its impact. The article notes that no datasets were generated or analyzed at protocol publication and that relevant data will be made available upon study completion.
The study received approval from the Trillium Health Partners Research Ethics Board (REB ID: #1258). CAB members and co-researchers will receive compensation: CAB members an annual stipend, and co-researchers appropriate stipends for participation. Knowledge translation outputs will include a Photovoice gallery, themed analyses, advocacy materials, and contributions to the broader program’s implementation toolkit and Research and Innovation Hub. Practices for public engagement include recognition in dissemination and opportunities for co-authorship where appropriate.
By centering caregiver perspectives and employing Photovoice within a CBPR framework, the study aims to amplify caregiver voices and generate actionable knowledge for addressing structural inequities in caregiving policy and practice. Outputs are intended to inform co-designed policy and practice recommendations, support health-system adoption of caregiver-inclusive practices, and contribute to a Research and Innovation Hub focused on caregiving. The protocol situates the Photovoice activities as one component of a broader program seeking to improve caregiver inclusion, resilience, and system sustainability.