Observational studyPloS one2016
Family Caregivers Who Would Be Unwilling to Provide Care at the End of Life Again: Findings from the Health Survey for England Population Survey.
Observational study in PloS one, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed.
- Characteristics and population estimates of unpaid end of life carers: An observational study.Palliative medicine · 2025Observational
- Does context matter? A discrete choice experiment investigating the impact of palliative context on EQ-5D-5L health state valuation.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Patients' and caregivers' experiences of familial and social support in resource-poor settings: A systematically constructed review and meta-synthesis.Palliative care and social practice · 2025Review
- On dementia, duties, and daughters. An ethical analysis of healthcare professionals being confronted with conflicts regarding filial duties in informal dementia care.Frontiers in psychiatry · 2024Article
- Getting back or giving back: understanding caregiver motivations and willingness to provide informal care.Health psychology and behavioral medicine · 2021Article
- Clustering of 27,525,663 Death Records from the United States Based on Health Conditions Associated with Death: An Example of big Health Data Exploration.Journal of clinical medicine · 2019Article
- The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers' hours of care and expenditures.Palliative medicine · 2017Article
- Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundFamily 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.
methodsObservational 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.
findingsHSE 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.
conclusionsA 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.
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