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

Currow, David C, Farquhar, Morag ORCID:, Ward, Alicia M, Crawford, Gregory B and Abernethy, Amy P (2011) Caregivers' perceived adequacy of support in end-stage lung disease:results of a population survey. BMC Pulmonary Medicine, 11. ISSN 1471-2466

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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.

Item Type: Article
Additional Information: This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Uncontrolled Keywords: australia,caregivers,cross-sectional studies,health surveys,humans,lung diseases,palliative care,perception,terminal care
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
Depositing User: Pure Connector
Date Deposited: 22 Oct 2016 21:46
Last Modified: 22 Oct 2022 01:47
DOI: 10.1186/1471-2466-11-55

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