Journal article
Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
Journal of palliative care, Vol.37(2), pp.87-92
03/23/2021
DOI: 10.1177/08258597211001991
PMID: 33752501
Abstract
Background:
The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown.
Objective:
To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication.
Design:
Cross-sectional observational study.
Setting/Subjects:
Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers.
Measurements:
Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents.
Results:
Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support.
Conclusions:
Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.
Details
- Title: Subtitle
- Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
- Creators
- Erin R. Currie - University of Alabama at BirminghamEmily E. Johnston - University of Alabama at BirminghamMarie Bakitas - University of Alabama at BirminghamEric Roeland - Massachusetts General HospitalLisa C. Lindley - University of Tennessee at KnoxvilleStephanie Gilbertson-White - University of IowaJennifer Mack - Dana-Farber Cancer Institute
- Resource Type
- Journal article
- Publication Details
- Journal of palliative care, Vol.37(2), pp.87-92
- Publisher
- Sage
- DOI
- 10.1177/08258597211001991
- PMID
- 33752501
- ISSN
- 0825-8597
- eISSN
- 2369-5293
- Number of pages
- 6
- Grant note
- R21NR016580 / National Institutes of Health/National Institute of Nursing Research; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA; NIH National Institute of Nursing Research (NINR) U2CNR014637 / Palliative Care Research Cooperative Group - National Institute of Nursing Research
- Language
- English
- Date published
- 03/23/2021
- Academic Unit
- Nursing; Internal Medicine
- Record Identifier
- 9984359858002771
Metrics
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