Johnson, Miriam J, Allgar, Victoria orcid.org/0000-0002-5228-2623, Macleod, Una et al. (3 more authors) (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. e0146960. ISSN 1932-6203
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 [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2016 Johnson et al. |
Keywords: | Adult,Age Factors,Aged,Caregivers,England,Family,Female,Health Care Surveys,Hospice Care,Humans,Male,Middle Aged,Palliative Care,Surveys and Questionnaires,Terminal Care,Volition |
Dates: |
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Institution: | The University of York |
Academic Units: | The University of York > Faculty of Sciences (York) > Hull York Medical School (York) |
Depositing User: | Pure (York) |
Date Deposited: | 30 Sep 2016 15:56 |
Last Modified: | 19 Dec 2024 00:06 |
Published Version: | https://doi.org/10.1371/journal.pone.0146960 |
Status: | Published |
Refereed: | Yes |
Identification Number: | 10.1371/journal.pone.0146960 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:105448 |