Skip to main content

Research Repository

Advanced Search

Family caregivers who would be unwilling to provide care at the end of life again: findings from the Health Survey for England population survey

Johnson, Miriam J.; Allgar, Victoria; Macleod, Una; Jones, Annie; Oliver, Steven; Currow, David


Victoria Allgar

Annie Jones

Steven Oliver

David Currow


Jo Thompson Coon


Background Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances. Methods Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted. Findings HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/ 632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data. Conclusions A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome.


Johnson, M. J., Allgar, V., Macleod, U., Jones, A., Oliver, S., & Currow, D. (2016). Family caregivers who would be unwilling to provide care at the end of life again: findings from the Health Survey for England population survey. PLoS ONE, 11(1), e0146960.

Journal Article Type Article
Acceptance Date Dec 23, 2015
Online Publication Date Jan 25, 2016
Publication Date 2016-02
Deposit Date Feb 3, 2016
Publicly Available Date Nov 23, 2017
Journal PLoS ONE
Print ISSN 1932-6203
Electronic ISSN 1932-6203
Publisher Public Library of Science
Peer Reviewed Peer Reviewed
Volume 11
Issue 1
Article Number ARTN e0146960
Pages e0146960
Keywords General Biochemistry, Genetics and Molecular Biology; General Agricultural and Biological Sciences; General Medicine
Public URL
Publisher URL
Additional Information Copy of article first published in: PLoS ONE, 2016, v.11, issue 1.


Article.PDF (228 Kb)

Copyright Statement
© 2016 Johnson 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.

You might also like

Downloadable Citations