Young caregivers in the end-of-life setting: a population-based profile of an emerging group.
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PURPOSE: Little is known about young caregivers of people with advanced life-limiting illness. Better understanding of the needs and characteristics of these young caregivers can inform development of palliative care and other support services. METHODS: A population-based analysis of caregivers was performed from piloted questions included in the 2001-2007 face-to-face annual health surveys of 23,706 South Australians on the death of a loved one, caregiving provided, and characteristics of the deceased individual and caregiver. The survey was representative of the population by age, gender, and region of residence. FINDINGS: Most active care was provided by older, close family members, but large numbers of young people (ages 15-29) also provided assistance to individuals with advanced life-limiting illness. They comprised 14.4% of those undertaking "hands-on" care on a daily or intermittent basis, whom we grouped together as active caregivers. Almost as many young males as females participate in active caregiving (men represent 46%); most provide care while being employed, including 38% who work full-time. Over half of those engaged in hands-on care indicated the experience to be worse or much worse than expected, with young people more frequently reporting dissatisfaction thereof. Young caregivers also exhibited an increased perception of the need for assistance with grief. CONCLUSION: Young people can be integral to end-of-life care, and represent a significant cohort of active caregivers with unique needs and experiences. They may have a more negative experience as caregivers, and increased needs for grief counseling services compared to other age cohorts of caregivers.
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Published Version (Please cite this version)10.1089/jpm.2010.0004
Publication InfoBurns, CM; LeBlanc, TW; Abernethy, A; & Currow, D (2010). Young caregivers in the end-of-life setting: a population-based profile of an emerging group. J Palliat Med, 13(10). pp. 1225-1235. 10.1089/jpm.2010.0004. Retrieved from https://hdl.handle.net/10161/3367.
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Adjunct Professor in the Department of Medicine
Amy P. Abernethy, MD PhDDirector, Center for Learning Health Care Director, Duke Cancer Care Research Program Professor of Medicine, Department of Medicine, Division of Medical Oncology, Duke University School of Medicine Associate Professor of Nursing, Duke University School of NursingDr. Abernethy, a hematologist/oncologist and palliative care physician, is Professor of Medicine in the Duke University School of Medicine, Director of the Duke Center for Learn
This author no longer has a Scholars@Duke profile, so the information shown here reflects their Duke status at the time this item was deposited.
Associate Professor of Medicine
I am a medical oncologist, palliative care physician, and patient experience researcher. My clinical practice focuses on the care of patients with hematologic malignancies, with a particular emphasis on myeloid conditions and acute leukemias including acute myeloid leukemia (AML), acute lymphocytic leukemia (ALL), myelodysplastic syndromes (MDS), and myeloproliferative neoplasms (MPNs / MPDs, CML). As founding Director of the Duke Cancer Patient Experience Researc
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