Caregiver Expectations: Predictors of a Worse Than Expected Caregiving Experience at the End of Life

Burns, EJ; Quinn, SJ; Abernethy, AP; Currow, DC

Caregiver Expectations: Predictors of a Worse Than Expected Caregiving Experience at the End of Life

Burns, EJ Quinn, SJ Abernethy, AP Currow, DC

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Publication Type:: Journal Article
Citation:: Journal of Pain and Symptom Management, 2015, 50 (4), pp. 453 - 461
Issue Date:: 2015-10-01

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Field	Value	Language
dc.contributor.author	Burns, EJ	en_US
dc.contributor.author	Quinn, SJ	en_US
dc.contributor.author	Abernethy, AP	en_US
dc.contributor.author	Currow, DC https://orcid.org/0000-0003-1988-1250	en_US
dc.date.available	2015-04-24	en_US
dc.date.issued	2015-10-01	en_US
dc.identifier.citation	Journal of Pain and Symptom Management, 2015, 50 (4), pp. 453 - 461	en_US
dc.identifier.issn	0885-3924	en_US
dc.identifier.uri	http://hdl.handle.net/10453/118539
dc.description.abstract	© 2015 American Academy of Hospice and Palliative Medicine. Context The gap between informal caregivers' expectations of caregiving at the end of life and their actual caregiving experience has important affective and behavioral consequences. Objectives This study analyzes for the first time the characteristics of those caregivers who report a worse or much worse than expected caregiving experience, providing a potential for future targeted intervention into the caregiving experience. Methods The South Australian Health Omnibus is an annual, random, face-to-face, and cross-sectional survey. From 2000 to 2007, respondents were asked a range of questions about end-of-life care, including in several years a question about how the caregiving experience compared with caregivers' expectation(s). Family members and friends who reported a worse or much worse than expected caregiving experience were the focus of this analysis. Univariable and multivariable logistic regression models were created to better define this group. Results Of the 1628 active caregivers for people at the end of life, almost half (48.3%) reported a worse or much worse than expected caregiving experience. A worse or much worse than expected caregiving experience was significantly associated with gender and with level of care provided. Women who provided daily hands-on care were significantly more likely to have a worse than expected experience compared with women who provided intermittent care (odds ratio [OR] 0.65; 95% CI 0.48-0.88; P = 0.005) or rare care (OR 0.39; 95% CI 0.27-0.56; P < 0.001). Of all those providing rare care, women were significantly less likely than men to report a worse than expected caregiving experience (OR 0.61; 95% CI 0.41-0.93; P = 0.020). Conclusion Caregiver expectations represent a novel and important focus for investigation into the caregiver experience. Explicitly eliciting expectations may in future lead to ways of better supporting caregivers.	en_US
dc.relation.ispartof	Journal of Pain and Symptom Management	en_US
dc.relation.isbasedon	10.1016/j.jpainsymman.2015.04.017	en_US
dc.subject.classification	Anesthesiology	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Palliative Care	en_US
dc.subject.mesh	Terminal Care	en_US
dc.subject.mesh	Multivariate Analysis	en_US
dc.subject.mesh	Logistic Models	en_US
dc.subject.mesh	Cross-Sectional Studies	en_US
dc.subject.mesh	Sex Characteristics	en_US
dc.subject.mesh	Caregivers	en_US
dc.subject.mesh	Australia	en_US
dc.subject.mesh	Female	en_US
dc.subject.mesh	Male	en_US
dc.subject.mesh	Anticipation, Psychological	en_US
dc.title	Caregiver Expectations: Predictors of a Worse Than Expected Caregiving Experience at the End of Life	en_US
dc.type	Journal Article
utslib.citation.volume	4	en_US
utslib.citation.volume	50	en_US
utslib.for	1110 Nursing	en_US
utslib.for	11 Medical and Health Sciences	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
utslib.copyright.status	closed_access
pubs.issue	4	en_US
pubs.publication-status	Published	en_US
pubs.volume	50	en_US

Abstract:

© 2015 American Academy of Hospice and Palliative Medicine. Context The gap between informal caregivers' expectations of caregiving at the end of life and their actual caregiving experience has important affective and behavioral consequences. Objectives This study analyzes for the first time the characteristics of those caregivers who report a worse or much worse than expected caregiving experience, providing a potential for future targeted intervention into the caregiving experience. Methods The South Australian Health Omnibus is an annual, random, face-to-face, and cross-sectional survey. From 2000 to 2007, respondents were asked a range of questions about end-of-life care, including in several years a question about how the caregiving experience compared with caregivers' expectation(s). Family members and friends who reported a worse or much worse than expected caregiving experience were the focus of this analysis. Univariable and multivariable logistic regression models were created to better define this group. Results Of the 1628 active caregivers for people at the end of life, almost half (48.3%) reported a worse or much worse than expected caregiving experience. A worse or much worse than expected caregiving experience was significantly associated with gender and with level of care provided. Women who provided daily hands-on care were significantly more likely to have a worse than expected experience compared with women who provided intermittent care (odds ratio [OR] 0.65; 95% CI 0.48-0.88; P = 0.005) or rare care (OR 0.39; 95% CI 0.27-0.56; P < 0.001). Of all those providing rare care, women were significantly less likely than men to report a worse than expected caregiving experience (OR 0.61; 95% CI 0.41-0.93; P = 0.020). Conclusion Caregiver expectations represent a novel and important focus for investigation into the caregiver experience. Explicitly eliciting expectations may in future lead to ways of better supporting caregivers.

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http://hdl.handle.net/10453/118539