Caregivers' perceived adequacy of support in end-stage lung disease: Results of a population survey

Currow, DC; Farquhar, M; Ward, AM; Crawford, GB; Abernethy, AP

Caregivers' perceived adequacy of support in end-stage lung disease: Results of a population survey

Currow, DC

Farquhar, M Ward, AM Crawford, GB Abernethy, AP

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Publication Type:: Journal Article
Citation:: BMC Pulmonary Medicine, 2011, 11
Issue Date:: 2011-11-25

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Field	Value	Language
dc.contributor.author	Currow, DC https://orcid.org/0000-0003-1988-1250	en_US
dc.contributor.author	Farquhar, M	en_US
dc.contributor.author	Ward, AM	en_US
dc.contributor.author	Crawford, GB	en_US
dc.contributor.author	Abernethy, AP	en_US
dc.date.available	2011-11-25	en_US
dc.date.issued	2011-11-25	en_US
dc.identifier.citation	BMC Pulmonary Medicine, 2011, 11	en_US
dc.identifier.uri	http://hdl.handle.net/10453/118188
dc.description.abstract	Background: End-stage lung disease (ESLD) is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses?Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%). Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful.Results: Of 1504 deaths reported, 145 (9.6%) were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p < 0.0001) and were less likely to access specialised palliative care services (38.4% versus 61.9%; p < 0.0001). For those with ESLD, the mean caring period was significantly longer at 25 months (standard deviation (SD) 24) than for 'other diagnoses' (15 months; SD 18; p < 0.0001). Domains where additional support would have been useful included physical care, information provision, and emotional and spiritual support.Conclusions: Caregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided. © 2011 Currow et al; licensee BioMed Central Ltd.	en_US
dc.relation.ispartof	BMC Pulmonary Medicine	en_US
dc.relation.isbasedon	10.1186/1471-2466-11-55	en_US
dc.subject.classification	Respiratory System	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Lung Diseases	en_US
dc.subject.mesh	Palliative Care	en_US
dc.subject.mesh	Terminal Care	en_US
dc.subject.mesh	Health Surveys	en_US
dc.subject.mesh	Cross-Sectional Studies	en_US
dc.subject.mesh	Perception	en_US
dc.subject.mesh	Caregivers	en_US
dc.subject.mesh	Australia	en_US
dc.title	Caregivers' perceived adequacy of support in end-stage lung disease: Results of a population survey	en_US
dc.type	Journal Article
utslib.citation.volume	11	en_US
utslib.for	1117 Public Health and Health Services	en_US
utslib.for	1102 Cardiorespiratory Medicine and Haematology	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	open_access
pubs.publication-status	Published	en_US
pubs.volume	11	en_US

Abstract:

Background: End-stage lung disease (ESLD) is a frequent cause of death. What are the differences in the supports needed by caregivers of individuals with ESLD at end of life versus other life-limiting diagnoses?Methods: The South Australian Health Omnibus is an annual, random, face-to-face, cross-sectional survey. In 2002, 2003 and 2005-2007, respondents were asked a range of questions about end-of-life care; there were approximately 3000 survey participants annually (participation rate 77.9%). Responses were standardised for the whole population. The families and friends who cared for someone with ESLD were the focus of this analysis. In addition to describing caring, respondents reported additional support that would have been helpful.Results: Of 1504 deaths reported, 145 (9.6%) were due to ESLD. The ESLD cohort were older than those with other 'expected' causes of death (> 65 years of age; 92.6% versus 70.6%; p < 0.0001) and were less likely to access specialised palliative care services (38.4% versus 61.9%; p < 0.0001). For those with ESLD, the mean caring period was significantly longer at 25 months (standard deviation (SD) 24) than for 'other diagnoses' (15 months; SD 18; p < 0.0001). Domains where additional support would have been useful included physical care, information provision, and emotional and spiritual support.Conclusions: Caregiver needs were similar regardless of the underlying diagnosis although access to palliative care specialist services occurred less often for ESLD patients. This was despite significantly longer periods of time for which care was provided. © 2011 Currow et al; licensee BioMed Central Ltd.

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