title: Family Caregivers Who Would Be Unwilling to Provide Care at the End of Life Again: Findings from the Health Survey for England Population Survey.
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.
  
  
  RESULTS
  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.
authors.affiliation: Hull York Medical School, University of Hull, Hull, United Kingdom.
authors.forename: Miriam J
authors.initials: MJ
authors.lastname: Johnson
authors.affiliation: Hull York Medical School, University of York, York, United Kingdom.
authors.forename: Victoria
authors.initials: V
authors.lastname: Allgar
authors.affiliation: Hull York Medical School, University of Hull, Hull, United Kingdom.
authors.forename: Una
authors.initials: U
authors.lastname: Macleod
authors.affiliation: Hull York Medical School, University of Hull, Hull, United Kingdom.
authors.forename: Annie
authors.initials: A
authors.lastname: Jones
authors.affiliation: Hull York Medical School, University of York, York, United Kingdom.
authors.forename: Steven
authors.initials: S
authors.lastname: Oliver
authors.affiliation: Discipline, Palliative and Supportive Services, Flinders University, Adelaide, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Currow
mesh_terms: D000328:Adult; D000367:Age Factors; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D004739:England; D005190:Family; D005260:Female; D019538:Health Care Surveys; D017051:Hospice Care / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D013727:Terminal Care; D014836:Volition
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