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Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada
Open accessAbstract
Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.
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“Guerriere et al., también encontró una asociación entre el uso de cuidados paliativos y una menor CdC(Guerriere et al., 2016).”
From Sobrecarga de trabajo en cuidadores de pacientes en cuidados paliativos oncológicos: Una revisión bibliográfica (2023) · cites this paper as Guerriere et al., 2016
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“A su vez la sobrecarga del cuidador también es considerado un predictor de depresión y ansiedad capaz de extenderse hasta la etapa de duelo (Guerriere et al., 2016)”
From Sobrecarga de trabajo en cuidadores de pacientes en cuidados paliativos oncológicos: Una revisión bibliográfica (2023) · cites this paper as Guerriere et al., 2016
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“la CdC es un importante predictor de depresión y ansiedad que puede llegar a manifestarse hasta la etapa de duelo (Guerriere et al., 2016).”
From Sobrecarga de trabajo en cuidadores de pacientes en cuidados paliativos oncológicos: Una revisión bibliográfica (2023) · cites this paper as Guerriere et al., 2016
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Cites
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“Furthermore, many of these outcomes extend into bereavement, increasing morbidity and mortality (Schulz & Beach 1999, Schulz et al. 2008, Kapari et al. 2010).”
BackgroundUsing SAS PROC MIXED to Fit Multilevel Models, Hierarchical Models, and Individual Growth Models
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Burden and Depression Among Caregivers of Patients With Cancer at the End of Life
Given, B. A., Wyatt, G. K., Given, C. W., Sherwood, P. R., Gift, A. G., DeVoss, D. N., & Rahbar, M. H. (2004) · Oncology nursing forum · doi:10.1188/04.onf.1105-1117 · Cited by 487
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Analysis of the Reliability of the Modified Caregiver Strain Index
Thornton, M., & Travis, S. S. (2003) · The Journals of Gerontology Series B · doi:10.1093/geronb/58.2.s127 · Cited by 413
Burden in Caregivers of Older Adults with Advanced Illness
Garlo, K. G., O’Leary, J. R., Ness, P. H. V., & Fried, T. R. (2010) · Journal of the American Geriatrics Society · doi:10.1111/j.1532-5415.2010.03177.x · Cited by 309
Research works printed but not linked: 1
- Guerriere, 2016, Predictors of place of death across the home based care trajectory, Journal of Palliative Care, 24, 428
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Sorted by citations
Determinants of overburdening among informal carers: a systematic review
Lindt, N., van Berkel, J., & Mulder, B. C. (2020) · BMC Geriatrics · doi:10.1186/s12877-020-01708-3 · Cited by 377
Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients
Ge, L., & Mordiffi, S. Z. (2016) · Cancer Nursing · doi:10.1097/ncc.0000000000000445 · Cited by 149
Ahn, S., Romo, R. D., & Campbell, C. L. (2020) · Patient Education and Counseling · doi:10.1016/j.pec.2020.03.012 · Cited by 155
Analysis of caregiver burden in palliative care: An integrated review
Choi, S., & Seo, J. (2019) · Nursing Forum · doi:10.1111/nuf.12328 · Cited by 124
Bijnsdorp, F. M., Onwuteaka-Philipsen, B. D., Boot, C. R. L., van der Beek, A. J., & Pasman, H. R. W. (2022) · BMC Palliative Care · doi:10.1186/s12904-022-01031-1 · Cited by 111
Metadata
- Authors
- Guerriere, D., Husain, A., Zagorski, B., Marshall, D., Seow, H., Brazil, K., Kennedy, J., Burns, S., Brooks, H., & Coyte, P. C.
- Affiliations
- University of Toronto (CA)
- Mount Sinai Hospital (CA)
- McMaster University (CA)
- Juravinski Cancer Centre (CA)
- Queen's University Belfast (GB)
- St. Joseph’s Healthcare Hamilton (CA)
- Queen's University (CA)
- Corresponding author
- Guerriere, Denise
- ORCID
- Venue
- Health & Social Care in the Community
- Publisher
- Wiley
- Published
- 2015-03-25
- Volume
- 24
- Issue
- 4
- Pages
- 428-438
- ISSN
- 0966-0410 (ISSN-L)
- OpenAlex
- W1983137016
- Cited by
- 107
- References
- 48
- Citations by year
- 2026: 7 · 2025: 17 · 2024: 6 · 2023: 15 · 2022: 10 · 2021: 17 · 2020: 12 · 2019: 5 · 2018: 5 · 2017: 6 · 2016: 4 · 2015: 2
- FWCI
- 6.08
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Health & Social Care in the Community (publishedVersion)
- PubMed (publishedVersion)
- Research Portal (Queen's University Belfast) (submittedVersion)
- Funders
- Canadian Institutes of Health Research (PHE-101530)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Keywords
- caregiver burden, family caregivers, home-based palliative care, cancer, patient functional status, hospice care, personal support workers, emergency department visits, gender differences in caregiving, caregiver support programmes
- MeSH terms
- Family Health, Female, Home Care Services, Humans, Male, Middle Aged, Ontario, Palliative Care, Prospective Studies, Caregivers
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