The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

Johnson, MJ; Currow, DC; Chynoweth, J; Weatherly, H; Keser, G; Hutchinson, A; Jones, A; Dunn, L; Allgar, V

The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

Johnson, MJ Currow, DC Chynoweth, J Weatherly, H Keser, G Hutchinson, A Jones, A Dunn, L Allgar, V

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Publisher:: SAGE PUBLICATIONS LTD
Publication Type:: Journal Article
Citation:: Palliat Med, 2024, 38, (7), pp. 725-736
Issue Date:: 2024-07

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Field	Value	Language
dc.contributor.author	Johnson, MJ
dc.contributor.author	Currow, DC
dc.contributor.author	Chynoweth, J
dc.contributor.author	Weatherly, H
dc.contributor.author	Keser, G
dc.contributor.author	Hutchinson, A
dc.contributor.author	Jones, A
dc.contributor.author	Dunn, L
dc.contributor.author	Allgar, V
dc.date.accessioned	2024-11-11T02:55:32Z
dc.date.available	2024-11-11T02:55:32Z
dc.date.issued	2024-07
dc.identifier.citation	Palliat Med, 2024, 38, (7), pp. 725-736
dc.identifier.issn	0269-2163
dc.identifier.issn	1477-030X
dc.identifier.uri	http://hdl.handle.net/10453/181833
dc.description.abstract	INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	SAGE PUBLICATIONS LTD
dc.relation.ispartof	Palliat Med
dc.relation.isbasedon	10.1177/02692163241259649
dc.rights	info:eu-repo/semantics/restrictedAccess
dc.subject	1117 Public Health and Health Services, 1199 Other Medical and Health Sciences
dc.subject.classification	Gerontology
dc.subject.classification	4203 Health services and systems
dc.subject.mesh	Humans
dc.subject.mesh	Male
dc.subject.mesh	Female
dc.subject.mesh	Middle Aged
dc.subject.mesh	Aged
dc.subject.mesh	Caregivers
dc.subject.mesh	Terminal Care
dc.subject.mesh	Adult
dc.subject.mesh	England
dc.subject.mesh	Aged, 80 and over
dc.subject.mesh	Family
dc.subject.mesh	Friends
dc.subject.mesh	Adolescent
dc.subject.mesh	Young Adult
dc.subject.mesh	Health Care Costs
dc.subject.mesh	Cost of Illness
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Humans
dc.subject.mesh	Terminal Care
dc.subject.mesh	Family
dc.subject.mesh	Cost of Illness
dc.subject.mesh	Adolescent
dc.subject.mesh	Adult
dc.subject.mesh	Aged
dc.subject.mesh	Aged, 80 and over
dc.subject.mesh	Middle Aged
dc.subject.mesh	Caregivers
dc.subject.mesh	Friends
dc.subject.mesh	Health Care Costs
dc.subject.mesh	England
dc.subject.mesh	Female
dc.subject.mesh	Male
dc.subject.mesh	Young Adult
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Humans
dc.subject.mesh	Male
dc.subject.mesh	Female
dc.subject.mesh	Middle Aged
dc.subject.mesh	Aged
dc.subject.mesh	Caregivers
dc.subject.mesh	Terminal Care
dc.subject.mesh	Adult
dc.subject.mesh	England
dc.subject.mesh	Aged, 80 and over
dc.subject.mesh	Family
dc.subject.mesh	Friends
dc.subject.mesh	Adolescent
dc.subject.mesh	Young Adult
dc.subject.mesh	Health Care Costs
dc.subject.mesh	Cost of Illness
dc.subject.mesh	Surveys and Questionnaires
dc.title	The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.
dc.type	Journal Article
utslib.citation.volume	38
utslib.location.activity	England
utslib.for	1117 Public Health and Health Services
utslib.for	1199 Other Medical and Health Sciences
pubs.organisational-group	University of Technology Sydney
pubs.organisational-group	University of Technology Sydney/Faculty of Health
pubs.organisational-group	University of Technology Sydney/UTS Groups
pubs.organisational-group	University of Technology Sydney/UTS Groups/Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT)
utslib.copyright.status	in_progress	*
dc.date.updated	2024-11-11T02:55:31Z
pubs.issue	7
pubs.publication-status	Published
pubs.volume	38
utslib.citation.issue	7

Abstract:

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/181833