---
title: "Photovoice protocol to build health system capacity by engaging unpaid caregivers"
id: "plos-one-2-building-capacity-in-health-systems-with-and-for-caregivers-a-photovoice"
canonical_url: "https://medichelpline.com/clinical-feed/plos-one-2-building-capacity-in-health-systems-with-and-for-caregivers-a-photovoice"
content_type: "clinical_feed_article"
specialty: "General"
source_name: "PLOS ONE (Medicine)"
source_url: "https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0358550"
published_at: "2026-09-15T14:00:00.000Z"
evidence_level: "Journal Feed"
license: "CC-BY-NC-4.0 / Informational Use"
---
# Photovoice protocol to build health system capacity by engaging unpaid caregivers
## Provenance & Clinical Metadata
- **Canonical URL:** https://medichelpline.com/clinical-feed/plos-one-2-building-capacity-in-health-systems-with-and-for-caregivers-a-photovoice
- **Specialty:** [General](https://medichelpline.com/clinical-feed/general.md)
- **Primary Source:** PLOS ONE (Medicine)
- **Source URL:** [Original Journal Publication](https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0358550)
- **Published At:** 2026-09-15T14:00:00.000Z
- **Evidence Rating:** Journal Feed
## Executive GIST (TL;DR)
- This protocol describes a Photovoice study using a **community-based participatory research (CBPR)** approach to amplify unpaid caregivers’ lived experience and inform health system change. - The study is part of a broader four-year program, in collaboration with the Canadian Centre for Caregiving Excellence, to co-design policy and practice recommendations, mobilize lived expertise, produce an implementation toolkit, and establish a Research and Innovation Hub focused on caregiving. - Photovoice workshops will be conducted with four priority caregiver groups in Peel Region, Ontario: caregivers of children with complex needs; caregivers of seniors; caregivers of young adults with mental health challenges; and women caregivers supporting multiple generations (the “Sandwich Generation”). - Each group will complete six virtual workshops covering photography, narrative development, collaborative theming, and advocacy planning; participants are framed as co-researchers to reflect participatory roles. - The study foregrounds inclusive practices: compensation (stipends), ongoing consent, check-ins, interpreter support where feasible, and supports throughout the research process. - A Community Advisory Board (CAB) formed in September 2024, composed of current and former caregivers with local expertise, will advise recruitment, knowledge translation, and study procedures and receive annual stipends. - Data will be collaboratively analyzed with co-researchers to identify cross-cutting themes and to generate actionable policy and practice recommendations; a follow-up qualitative evaluation will assess participant experiences with the method and its impact. - The study setting is Trillium Health Partners and Peel Region, a highly diverse community; maximum variation sampling will be used though final composition depends on who expresses interest and is able to participate. - Eligibility criteria require residence in Peel Region and age over 16, with group-specific criteria (e.g., caring for a child 0–18 with long-term developmental or behavioural conditions; caring for someone 65+; supporting a young adult receiving mental health services; women caring for at least two generations). - The protocol emphasizes that caregivers’ contributions are integral to care quality, safety, and system sustainability, and that Photovoice can capture contextualized lived experience useful for advocacy and systems change.
## Clinical Analysis & Structured Key Points
Building capacity in health systems with and for caregivers: A photovoice protocol | PLOS One Browse Subject Areas ? Click through the PLOS taxonomy to find articles in your field. For more information about PLOS Subject Areas, click here . Article Authors Metrics Comments Media Coverage Peer Review Reader Comments Figures Figures Abstract Introduction 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. Methods 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. Discussion and conclusion 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. Citation: Fuentes K, Jacobson D, Birze A, Cadel L, Fierheller D, Marcinow M, et al. (2026) Building capacity in health systems with and for caregivers: A photovoice protocol. PLoS One 21(9): e0358550. https://doi.org/10.1371/journal.pone.0358550 Editor: Jennifer Annette Campbell, University at Buffalo School of Medicine and Biomedical Sciences: University at Buffalo Jacobs School of Medicine and Biomedical Sciences, UNITED STATES OF AMERICA Received: September 25, 2025; Accepted: September 2, 2026; Published: September 15, 2026 Copyright: © 2026 Fuentes et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability: No datasets were generated or analysed during the current study. All relevant data from this study will be made available upon study completion. Funding: KK received funding for this study from the Azrieli Foundation ( https://azrielifoundation.org/) . The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Competing interests: The authors have declared that no competing interests exist. Introduction Caregivers play a critical, yet under-recognized and under-supported role in Canada’s healthcare system [ 1 ]. In the context of the proposed research, the term “caregivers” is defined as those who provide unpaid care and support for family, friends, or neighbours with disabilities, medical conditions, or mental wellness concerns. Other terms used to refer to this group include “informal caregivers”, “unpaid caregivers”, or “carers” [ 2 ]. Research indicates that in Canada, one in every four individuals engages in caregiving, cumulatively investing over five billion hours annually in this role [ 3 ]. Further, caregivers contribute billions of dollars every year to Canada’s health and social system by taking on unpaid duties that would typically be provided through paid services [ 4 ]. The specific activities undertaken by caregivers vary depending on the type and extent of support required by the person being cared for. Overall examples of such activities include personal and household care (e.g., bathing, feeding, dressing, cleaning, laundry and other housekeeping), medical and health-related tasks (e.g., managing medications, attending medical appointments), emotional and social support, and advocacy [ 5 ]. Looking at particular examples, caregivers of individuals with cancer have been reported to assist with treatment-related decisions [ 6 ], mental health support [ 7 ], scheduling appointments, providing transportation, care coordination [ 8 ], personal care, translation, portering, advocacy, and ensuring patient inclusion in care [ 9 ]. Similarly, caregivers of older adults assist with “hands-on” care [ 9 ], personal care, instrumental activities of daily living support (e.g., cooking, laundry), and conveying patient-related needs and information to healthcare providers [ 5 ]. Caregivers are therefore integral actors in health and social care systems who must be recognized, included, and supported in their roles [ 5 , 10 , 11 ]. In fact, caregiver presence has been associated with improved patient experiences, increased patient safety [ 12 ], and decreased complications [ 13 ]. Concordantly, their absence is associated with significantly poorer patient outcomes and experiences as well as with increased strain on formal healthcare resources [ 14 , 15 ]. Caregivers’ vital role in healthcare system operations was only further substantiated by the circumstances brought about by the COVID-19 pandemic. For example, during the height of the pandemic, the “no visitors” policy implemented across Canadian hospitals meant that caregivers of patients receiving treatment could not contribute their vital work on healthcare teams [ 9 ]. The work caregivers could no longer contribute left gaps in care, which were transferred to overburdened and under-resourced healthcare providers who often were unable to fulfill these extra care-related tasks. As a result, patient safety, patient experiences, and care quality declined [ 9 ]. Thus, perhaps unsurprisingly, the Canadian Centre for Caregiving Excellence [ 16 ] states that “if all caregivers took a week off, every Canadian would experience the collapse of our care systems before noon on the first day” (p. 1). Despite the significant contributions made by Canada’s caregivers, there is a noted lack of support and resources available [ 5 , 17 ]. The negative impacts of the under-valuing and under-resourcing of caregiving are increasingly evident. For example, results from the 2023 National Caregiving Survey highlighted that one in four caregivers report fair or poor mental health and that 37% experienced financial hardship due to their caregiving role [ 1 ]; in another national survey (3000 + caregivers), it was 63% [ 17 ]. Financial strain for caregivers has been noted in other work due to the caregiving commitment, including time off work (and a lack of work-related flexibility and accommodations), resources required to support care that are paid out of pocket (e.g., extra homecare, accessibility-related equipment, incontinence products), and difficulty attaining government supports (e.g., due to restricted eligibility, lacking funds, and cumbersome application processes) [ 5 , 17 ]. Given the personal strain and lack of resources experienced by caregivers, especially in the context of the ongoing health system recovery from the COVID-19 pandemic, caregiver stress and burnout have further intensified. For example, the Canadian Institute for Health Information (CIHI) [ 18 ] reports that one in three caregivers of people receiving homecare are distressed (i.e., “the inability to continue with caring activities”, p. 1). While respite services are known to prevent burnout [ 19 ], just 8% of caregivers surveyed by the Canadian Centre for Caregiving Excellence (CCCE) report access to such services [ 17 ]. Inadequate structural support for caregivers not only threatens their well-being but also has broader implications for health system sustainability, economic productivity (e.g., through workforce attrition and out-of-pocket care costs), and gender equity (given that caregiving responsibilities disproportionately fall on women) [ 20 , 21 ]. To address this gap, there is a critical need to identify, implement, and evaluate evidence-informed practices that support caregivers. This includes amplifying caregiver voices, deepening understanding of the financial, emotional, and physical tolls of caregiving, and co-designing responsive policy and service solutions in partnership with caregivers themselves. Materials and methods Study objectives The Photovoice study outlined in this protocol is a foundational component of a broader four-year research program being conducted in collaboration with the CCCE. The broader program aims to advance caregiver-informed health-system priorities and establish a Research and Innovation Hub focused on caregivers’ essential role in health and social systems. The overarching objectives of the broader program are to: 1) co-design policy and practice recommendations by understanding the lived experiences (and user-centred priorities) of caregivers from diverse communities and health contexts; 2) mobilize evidence and build lived expertise knowledge to help communicate and amplify caregiver voices for policy, system, and practice change; 3) co-design an implementation toolkit to support health and social systems in adopting best practices for caregivers; and 4) establish a Research and Innovation Hub focused on caregivers’ essential role in health and social systems. This protocol specifically outlines plans for a Photovoice workshop series and related knowledge translation activities. Photovoice is an inclusive and participatory arts-informed method [ 22 – 24 ] that allows for lived experience to be explored, better understood, and leveraged in advocacy work. The research team will work alongside caregivers from diverse communities to co-create a Photovoice gallery and collaborative themed analysis that highlights promising practices, challenges, and priorities for advocacy and systems change [ 22 , 23 ]. The evidence, recommendations, and knowledge translation outputs generated through the Photovoice activities will contribute to the overarching objectives of the broader research program. Study design Photovoice is an arts-informed method that involves co-researchers engaging in a series of collaborative group workshops where they take photographs or select images in response to a guiding research topic directed toward bringing about social change [ 23 ]. Keeping with best practices in CBPR approaches, the term “co-researchers” is used in this protocol to describe what are traditionally called “participants”. The term “co-researchers” communicates the participatory and equitable roles that caregivers play throughout this project and their involvement in the planning and carrying out of research tasks [ 25 ]. The Photovoice method has often been used when working alongside individuals and communities whose perspectives have historically been neglected in service and program delivery [ 24 ]. The flexible and inclusive approach to knowledge sharing and communication (i.e., providing opportunities for visual rather than just text-based narratives) makes Photovoice a promising method for gathering information about contextualized experiences [ 24 , 26 , 27 ]. Another key strength of this approach is the capacity to capture local knowledge and information through the perspectives of community members and raise situated awareness about the need for policy, practice, and systems changes [ 22 ]. Photovoice has participatory underpinnings and an advocacy and action-oriented approach [ 28 ], which makes the method well-suited for contributing to this project’s objectives of amplifying caregiver voices and developing an implementation toolkit to support health and social systems in adopting best practices for caregivers. A community-based participatory research approach: In alignment with Community Based Participatory Research (CBPR) approaches, the Photovoice method encourages self-expression, creates opportunities for advocacy and learning in supportive group settings, and can help make traditionally hierarchical research spaces more inclusive [ 22 ]. A key tenet of CBPR is the creation of a collaborative, equitable, and supportive research and knowledge dissemination environment where community members with lived experience contribute their skills and expertise and participate in decision-making processes [ 29 – 31 ]. A CBPR approach requires meaningful community involvement and a flexible, iterative process that integrates academic and community-based knowledge throughout the research cycle [ 29 , 31 , 32 ]. Best practices will be followed for public engagement in healthcare such as significant contributions to research activities and training, recognition and inclusion in publications (including as co-authors) and other knowledge dissemination products, appropriate compensation through stipends, and equity between all members of the research team [ 33 – 35 ]. Creating a Community Advisory Board (CAB) is a key component of CBPR and supports community engagement and local involvement in shaping research and knowledge translation agendas [ 36 ]. In September of 2024, a CAB was formed comprising current and former caregivers with experience supporting children, parents, spouses, friends, and older adults across a range of health and social care contexts. Members also bring experience in caregiver and patient advisory roles, community services, disability advocacy, home care, seniors’ services, research, and health-system leadership. Their lived, community, and professional experiences are grounded in the Peel Region context, enabling them to provide locally relevant guidance throughout the Photovoice project. The purpose of this group is to support and inform the development of all phases of the photovoice project described in this protocol. To support CAB sustainability, members receive an annual stipend for their advisory work and commit to a one-year term. CAB members also are provided with an option to renew at the end of each year over the anticipated four-year project period. Under the leadership of the principal investigator (KK) and a community co-chair (BP), members of the CAB will provide guidance throughout the photovoice project research cycle, including the provision of feedback on recruitment strategies and knowledge translation activities. Study setting Trillium Health Partners is a large community and academic teaching hospital that engages a rapid-learning health system model and is located in the Peel Region, Ontario [ 37 ]. Peel Region is one of the most diverse communities in Canada with more than 50% of residents having immigrated to Canada [ 38 ]. In 2021, approximately 69% of Peel residents belonged to racialized population groups group, with South Asian residents comprising the largest racialized population in the region, followed by Black, Filipino, Chinese, and Arab residents [ 39 , 40 ]. Recent immigrants—defined as immigrants who first obtained landed immigrant or permanent resident status between January 1, 2016 and May 11, 2021—comprised approximately 14.0% of Peel’s immigrant population [ 40 , 41 ].These demographic characteristics highlight this setting’s potential to learn from caregivers from diverse communities to improve the knowledge base informing local and national caregiver strategies. Although maximum variation sampling [ 42 ] will be used to recruit eligible caregivers with a range of identities and experiences, the final sample composition will depend on who expresses interest and is able to participate, and therefore may not proportionally reflect Peel Region’s population distribution. Ethics approval This study received approval from the Trillium Health Partners Research Ethics Board (REB ID: #1258). Study participants The Photovoice activities will involve working alongside four separate groups of caregivers: 1) caregivers of children with complex care needs; 2) caregivers of seniors living with a disability, medical condition, or illness; 3) caregivers supporting young adults with mental health challenges 4) women caregivers supporting multiple generations (e.g., both young children and aging parents, or caring for aging parents, adult children, and young grandchildren–all of which, in this study context, are referred to as the ‘Sandwich Generation’). These diverse caregiver populations were selected in alignment with the strategic priorities of the organization where this study is based, which include a commitment to supporting the health, wellness, and program development for people across the lifespan. To participate in this study, caregivers must meet the following eligibility criteria : 1) reside in Peel Region; and 2) be over the age of 16. There is a preference for co-researchers to be comfortable conversing in English due to the complexity of organizing translation activities for Photovoice, which relies on group engagement and collaboration. Translation will be facilitated by an interpreter if a pre-established group arises who prefers to conduct the workshop series in another language. If one individual requests translation support for a workshop series facilitated in English, the research team will strive to accommodate this. Additional eligibility criteria for each group are outlined below. Any criteria may be refined based on discussion with the CAB, project team members, and broader community member input. Group 1 criteria ( caregivers of children with complex care needs): Have experience as an unpaid parent, family member, friend, or other support for a child aged 0–18 years with a diagnosed or suspected long-term developmental or behavioural condition, such as autism spectrum disorder, developmental delay, or behavioural challenges that affect daily activities. The child must experience noticeable challenges in everyday functioning compared with peers of a similar age, require ongoing healthcare, therapeutic, community, or school-based services or supports (whether or not these are currently available), and require a level of care coordination or advocacy that places significant demands on the family. Group 2 criteria ( caregivers of seniors) : Have experience directly caring for a friend or family member who is 65 years of age or older. Group 3 criteria ( caregivers supporting young adults with mental health challenges): Have experience supporting a friend or family member seeking or receiving mental health services. Group 4 criteria ( caregivers supporting multiple generations) : 1) self-identify as a woman; 2) be a caregiver for at least two generations simultaneously, with at least one of those individuals having a disability, medical condition, or illness. Sampling and recruitment The sampling approach will be purposive and will use maximum variation sampling to support the inclusion of
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