ArticleBMC geriatrics2021
"Caregiving is like on the job training but nobody has the manual": Canadian caregivers' perceptions of their roles within the healthcare system.
Article in BMC geriatrics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 papers.
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.
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.
Who cites it
32 citing papers in PubMed, 52 citations in OpenAlex.
- Quality of Life and Needs in Caregivers: Results From the Prospective Multicentric Open-Label Randomized Study of Informal Caregivers of Elderly Patients.International journal of public health · 2023Trial
- Exploring Patient and Caregiver Work and Continuity of Care During Hospital-to-Home Transitions of Care in the Canadian Context.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Illness Representations and Quality of Life Among Informal Cancer Caregivers: Examining the Role of Social Support.Healthcare (Basel, Switzerland) · 2026Article
- The Impact of Dementia Caregiving on the Health of the Spousal Caregiver.Medicina (Kaunas, Lithuania) · 2026Review
- Bridging Infrastructure Gaps for Intergenerational Caregivers in Public Health Emergencies.Public health reports (Washington, D.C. : 1974) · 2026Article
- Prevalence and Predictors of Stress Among Caregivers of Children with Developmental Disorders.Journal of autism and developmental disorders · 2026Article
- Self-Perceived Preparedness Needs Among Caregivers of Veterans With and Without Dementia: An Exploratory Study Using Open-Ended Survey Data.JMIR formative research · 2026Article
- Loneliness and perceived stress in family caregivers of older adults with disabilities: the mediating role of psychological resilience.BMC geriatrics · 2026Article
- Unveiling the Hidden Challenges: A Systematic Review of Self-Identified Caregiver Support Needs for Older Adults in Canada.Public health reviews · 2026Review
- Caring amid crisis: a qualitative study of caregivers' experiences, wellbeing, and support for older adults.Frontiers in public health · 2026Article
- Community-involved care transition interventions to support essential care partners of stroke survivors: a rapid review protocol.BMJ open · 2025Article
- The Development and Evaluation of a Retrieval-Augmented Generation Large Language Model Virtual Assistant for Postoperative Instructions.Bioengineering (Basel, Switzerland) · 2025Article
- Article
- "Your whole life is turned upside down": a reflexive thematic analysis identifying recommendations for designing and conducting qualitative research with cancer caregivers.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- The uneven triad: a qualitative study of perspectives of relatives, patients, and professionals on (not) involving relatives in mental health.BMC psychiatry · 2025Article
- Maternal knowledge of pediatric first aid in Riyadh: Addressing gaps for improved child safety and women's health outcomes.Medicine · 2025Article
- Transforming Care Through Co-Design: Developing Inclusive Caregiver-Centered Education in Healthcare.Healthcare (Basel, Switzerland) · 2025Article
- Measuring person-centered integrated care for people living with mild to moderate chronic kidney disease and multimorbidity: a cross-sectional survey.Frontiers in health services · 2025Article
- An educational programme for home mechanical ventilation in motor neuron disease.Breathe (Sheffield, England) · 2025Review
- Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis.International journal of qualitative studies on health and well-being · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 5 institutions in 1 country.
Funding
Abstract
backgroundStepping into the role of an unpaid caregiver to offer help is often considered a natural expectation of family members or friends. In Canada, such contributions are substantial in terms of healthcare provision but this comes at a considerable cost to the caregivers in both health and economic terms.
methodsIn this study, we conducted a secondary analysis of a collection of qualitative interviews with 39 caregivers of people with chronic physical illness to assess how they described their particular roles in caring for a loved one. We used a model of caregiving roles, originally proposed by Twigg in 1989, as a guide for our analysis, which specified three predominant roles for caregivers - as a resource, as a co-worker, and as a co-client.
resultsThe caregivers in this collection spoke about their roles in ways that aligned well with these roles, but they also described tasks and activities that fit best with a fourth role of 'care-coordinator', which required that they assume an oversight role in coordinating care across institutions, care providers and often advocate for care in line with their expectations. For each of these types of roles, we have highlighted the limitations and challenges they described in their interviews.
conclusionsWe argue that a deeper understanding of the different roles that caregivers assume, as well as their challenges, can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team. We provide some examples of system-level policies and programs from different jurisdictions developed in recognition of the need to sustain caregivers in their role and respond to such limitations.
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What OpenQuestion holds
Registered trials
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.