Journal
JOURNAL OF PALLIATIVE CARE
Volume 37, Issue 2, Pages 87-92Publisher
SAGE PUBLICATIONS INC
DOI: 10.1177/08258597211001991
Keywords
adolescent and young adult; cancer; quality; end-of-life care; palliative care; caregiver
Categories
Funding
- National Institutes of Health/National Institute of Nursing Research [R21NR016580]
- Palliative Care Research Cooperative Group - National Institute of Nursing Research [U2CNR014637]
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The study revealed that there are many unmet needs in the quality of end-of-life care for adolescents and young adults with cancer, especially in terms of communication and emotional support.
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.
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