Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Denise Guerriere*, Amna Husain, Brandon Zagorski, Denise Marshall, Hsien Seow, Kevin Brazil, Julia Kennedy, Sheri Burns, Heather Brooks, Peter C. Coyte

*Corresponding author for this work

Research output: Contribution to journalArticle

20 Citations (Scopus)


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.

Original languageEnglish
Pages (from-to)428-438
Number of pages11
JournalHealth and Social Care in the Community
Issue number4
Early online date25 Mar 2015
Publication statusPublished - Jul 2016


  • cancer
  • family caregivers
  • home-based care
  • palliative care
  • predictors of caregiver burden
  • public and private expenditures

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Health Policy
  • Social Sciences (miscellaneous)
  • Sociology and Political Science

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  • Cite this

    Guerriere, D., Husain, A., Zagorski, B., Marshall, D., Seow, H., Brazil, K., Kennedy, J., Burns, S., Brooks, H., & Coyte, P. C. (2016). Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada. Health and Social Care in the Community, 24(4), 428-438.