Evidence map›Paper›PMID 42743355›Full record

ArticlePloS one2026

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

Kristina Fuentes, Danielle Jacobson, Arija Birze, Lauren Cadel, Dianne Fierheller, Michelle Marcinow, Bhavini Patel, Abby Vijayakumar, Ian Zenlea, Kerry Kuluski and 1 more

Abstract read
In one paragraph

Article in PloS one, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Kristina FuentesInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.ORCID https://orcid.org/0000-0002-3337-7299
Danielle JacobsonInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.
Arija BirzeInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.ORCID https://orcid.org/0000-0002-1988-8383
Lauren CadelInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.
Dianne FierhellerInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.
Michelle MarcinowInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.ORCID https://orcid.org/0000-0002-5214-7974
Bhavini PatelInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.
Abby VijayakumarInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.
Ian ZenleaInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.
Kerry KuluskiInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.
Elizabeth MansfieldInstitute for Better Health, Trillium Health Partners, Mississauga, Ontario, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionUnpaid 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.

methodsUsing 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

conclusionThis 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.

Indexed as

Capacity BuildingCaregiversCOVID-19Community-Based Participatory ResearchFemaleHumansOntarioSARS-CoV-2

Identifiers

PMID42743355
PMCPMC13577488

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.