Journal article
Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
Journal of adolescent and young adult oncology, Vol.11(5), pp.498-505
12/06/2021
DOI: 10.1089/jayao.2021.0154
PMCID: PMC9595604
PMID: 34870475
Abstract
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL).Methods: We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts.Results: Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL.Conclusions: Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
Details
- Title: Subtitle
- Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
- Creators
- Bryan A. Sisk - Washington University in St. LouisMegan A. Keenan - Washington University in St. LouisGinny L. Schulz - Washington University in St. LouisMarie Bakitas - University of Alabama at BirminghamErin R. Currie - University of Alabama at BirminghamStephanie Gilbertson-White - University of IowaLisa C. Lindley - University of Tennessee at KnoxvilleEric J. Roeland - Oregon Health & Science UniversityJennifer W. Mack - Dana-Farber Cancer Institute
- Resource Type
- Journal article
- Publication Details
- Journal of adolescent and young adult oncology, Vol.11(5), pp.498-505
- Publisher
- Mary Ann Liebert, Inc
- DOI
- 10.1089/jayao.2021.0154
- PMID
- 34870475
- PMCID
- PMC9595604
- ISSN
- 2156-5333
- eISSN
- 2156-535X
- Number of pages
- 8
- Grant note
- R21 R21NR016580 / NIH; United States Department of Health & Human Services; National Institutes of Health (NIH) - USA U2CNR014637 / Palliative Care Research Cooperative (PCRC) Group - National Institute of Nursing Research
- Language
- English
- Date published
- 12/06/2021
- Academic Unit
- Nursing; Internal Medicine
- Record Identifier
- 9984359947102771
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