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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Burns, CM, TW LeBlanc, A Abernethy and D Currow (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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Thomas William LeBlanc
I am a medical oncologist, palliative care physician, and patient experience researcher, and serve as Chief Patient Experience and Safety Officer for the Duke Cancer Institute. 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, PV, ET, MF), as well as rarer and related diseases like BPDCN.
As founding Director of the Duke Cancer Patient Experience Research Program (CPEP), my research investigates common issues faced by people with cancer, including issues of symptom burden, quality of life, psychological distress, prognostic understanding, and treatment decision-making. This work aims to improve patients' experiences living with serious illnesses like blood cancers, including the integration of specialist palliative care services to provide an extra layer of support along with their comprehensive cancer care. More broadly, our team in CPEP conducts various studies of patient experience and outcomes issues in oncology, including retrospective chart review studies, comparative effectiveness work, prospective observational studies and registries, and qualitative research, along with efforts to facilitate the integration of patient-generated health data (PGHD) into routine cancer care processes, such as with electronic patient-reported outcome measures (ePROs) and other mobile health interventions (mHealth).
This work has led to recognition as an "Inspirational Leader under 40" by the American Academy of Hospice and Palliative Medicine (AAHPM), "Fellow" status from the Academy in 2016, the 2018 international "Clinical Impact Award" from the European Association for Palliative Care, and the AAHPM "Early Career Investigator" award in 2020. I served as 2017-18 Chair of the ASCO Ethics Committee, and Chaired the Scientific Review Committee of the NIH/NINR-funded Palliative Care Research Cooperative Group through June 2023 (PCRC; www.palliativecareresearch.org). I have served on various national guideline panels for AML and for palliative/supportive care issues in oncology, and was inducted as a Fellow of the American Society of Clinical Oncology (FASCO) in 2021. To date I have published over 200 Medline-indexed articles, and several chapters in prominent textbooks of oncology and palliative medicine.
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