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dc.contributor.author Aoun, S
dc.contributor.author McConigley, R
dc.contributor.author Abernethy, A
dc.contributor.author Currow, DC
dc.coverage.spatial United States
dc.date.accessioned 2011-04-15T16:46:28Z
dc.date.issued 2010-06
dc.identifier http://www.ncbi.nlm.nih.gov/pubmed/20557235
dc.identifier.citation J Palliat Med, 2010, 13 (6), pp. 653 - 661
dc.identifier.uri http://hdl.handle.net/10161/3292
dc.description.abstract INTRODUCTION: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. METHODS: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis. RESULTS: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. CONCLUSION: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.
dc.format.extent 653 - 661
dc.language eng
dc.language.iso en_US en_US
dc.relation.ispartof J Palliat Med
dc.relation.isversionof 10.1089/jpm.2009.0318
dc.subject Aged
dc.subject Caregivers
dc.subject Cost of Illness
dc.subject Cross-Sectional Studies
dc.subject Data Collection
dc.subject Female
dc.subject Humans
dc.subject Male
dc.subject Needs Assessment
dc.subject Neurodegenerative Diseases
dc.subject South Australia
dc.title Caregivers of people with neurodegenerative diseases: profile and unmet needs from a population-based survey in South Australia.
dc.type Journal Article
dc.description.version Version of Record en_US
duke.date.pubdate 2010-6-0 en_US
duke.description.endpage 661 en_US
duke.description.issue 6 en_US
duke.description.startpage 653 en_US
duke.description.volume 13 en_US
dc.relation.journal Journal of palliative medicine en_US
pubs.author-url http://www.ncbi.nlm.nih.gov/pubmed/20557235
pubs.issue 6
pubs.organisational-group /Duke
pubs.organisational-group /Duke/School of Medicine
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments/Medicine
pubs.organisational-group /Duke/School of Medicine/Clinical Science Departments/Medicine/Medicine, Medical Oncology
pubs.organisational-group /Duke/School of Medicine/Institutes and Centers
pubs.organisational-group /Duke/School of Medicine/Institutes and Centers/Duke Clinical Research Institute
pubs.organisational-group /Duke/School of Nursing
pubs.organisational-group /Duke/School of Nursing/School of Nursing
pubs.volume 13
dc.identifier.eissn 1557-7740

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