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

Abstract

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.

Citation

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. https://doi.org/10.1371/journal.pone.0146960

• 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
• DOI: https://doi.org/10.1371/journal.pone.0146960
• Keywords: General Biochemistry, Genetics and Molecular Biology; General Agricultural and Biological Sciences; General Medicine
• Public URL: https://hull-repository.worktribe.com/output/384762
• Publisher URL: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0146960
• Additional Information: Copy of article first published in: PLoS ONE, 2016, v.11, issue 1.