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Dublin Core
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Special Edition #2 2022 List
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Special Edition #2
URL Address
<a href="http://doi.org/10.1002/cncr.32935" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.32935</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Bereaved Parents' Views on End-Of-Life Care for Children with Cancer: Quality Marker Implications
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Cancer
Date
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2020
Subject
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bereaved parents; bereavement; cancer; end-of-life care; oncology; pediatric cancer; pediatrics; quality markers
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Johnston EE; Molina J; Martinez I; Dionne-Odom JN; Currie ER; Crowl T; Butterworth L; Chamberlain LJ; Bhatia S; Rosenberg AR
Description
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Background: End-of-life (EOL) quality markers in adult oncology include home death and intensive care unit avoidance. Corresponding markers are lacking in pediatric oncology. This study was aimed at describing bereaved parents' perspectives of high-quality EOL care in pediatric oncology. Method(s): This study enrolled a convenience sample of 28 bereaved parents (English- or Spanish-speaking) whose children (0-21 years old) had died of cancer >=6 months before. Semistructured interviews were conducted to elicit parental perceptions of medically intense/quality EOL care. Interviews were recorded and transcribed verbatim (30 hours), and study team consensus and content analyses identified themes related to EOL quality markers. Related quotes were scored on a 5-point Likert scale ranging from 1 (supported comfort care) to 5 (supported medically aggressive care). Result(s): The children died in 1998-2017 at a mean age of 10 years (SD, 5.2 years); 50% had a solid tumor, and 46% were Spanish-speaking. Themes included 1) home death preference (unless home support was inadequate; median score, 1.6), nonaggressive care (median score, 2.4), and continued anticancer therapy (median score, 3.2); 2) programs/policies that could alleviate barriers limiting a family's time with a dying child (visiting restrictions and financial strains); 3) the need to prepare the family for death (eg, what would happen to the child's body), and 4) perceived abandonment. Conclusion(s): This is the first qualitative study to identify quality makers for children dying of cancer from bereaved parents' perspectives. Natural death is generally preferred, and quality measures that address barriers to parents' spending time with their children, a lack of preparation for the events surrounding death, and feelings of abandonment are critical. Future studies need to validate these findings and develop targeted interventions. Copyright © 2020 American Cancer Society
Identifier
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<a href="http://doi.org/10.1002/cncr.32935" target="_blank" rel="noreferrer noopener">10.1002/cncr.32935</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2022 Special Edition 2 - Parent Perspectives
Bereaved Parents
Bereavement
Bhatia S
Butterworth L
Cancer
Chamberlain LJ
Crowl T
Currie ER
Dionne-Odom JN
End-of-life Care
Johnston EE
Martinez I
Molina J
Oncology
Pediatric Cancer
Pediatrics
quality markers
Rosenberg AR