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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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Special Edition #2 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
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
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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bereaved parents; bereavement; cancer; end-of-life care; oncology; pediatric cancer; pediatrics; quality markers
Creator
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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
An account of the resource
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>
Rights
Information about rights held in and over the resource
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
-
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
A name given to the resource
2021 Special Edition 2 - Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/cncr.33935" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.33935</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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Early Palliative Care Is Associated With Less Intense Care in Children Dying With Cancer in Alabama: A Retrospective, Single-Site Study
Publisher
An entity responsible for making the resource available
Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
hospice; palliative care; pediatric cancer; end-of-life care
Creator
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Davis ES; Martinez I; Hurst G; Bhatia S; Johnston EE
Description
An account of the resource
BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233 children (0-19 years) who received cancer-directed therapy at Children's of Alabama and died from 2010 through 2019. Rates and disparities in palliative care utilization and the association between palliative care and intense EOL care, death location, and hospice were examined. RESULTS: The median death age was 11 years; 62% were non-Hispanic White. Forty-one percent had a non-central nervous system (CNS) solid tumor. Fifty-eight percent received palliative care, and 36% received early palliative care (≥30 days before death). Children without relapsed/refractory disease were less likely to receive palliative care than those who had relapsed/refractory disease (adjusted odds ratio [aOR], 0.2; 95% confidence interval [CI], 0.1-0.7). Children with CNS tumors and hematologic malignancies were less likely to have early palliative care (aOR for CNS tumors, 0.4; 95% CI, 0.2-0.7; aOR for hematologic malignancies, 0.3; 95% CI, 0.2-0.7) than children with non-CNS solid tumors. Late palliative care (vs none) was associated with more medically intense care (aOR, 3.3; 95% CI, 1.4-7.8) and hospital death (aOR, 4.8; 95% CI, 1.9-11.6). Early palliative care (vs none) was associated with more hospice enrollment (aOR, 3.4; 95% CI, 1.5-7.6) but not medically intense care (aOR, 1.3; 95% CI, 0.6-2.9) or hospital death (aOR, 1.8; 95% CI, 0.8-3.7). CONCLUSIONS: Fifty-eight percent of children dying of cancer in Alabama receive palliative care, but EOL care varies with the receipt and timing (early vs late) of palliative care. Whether this variation reflects differences in child and family preferences or systemic factors (eg, hospice access) remains unknown.
Identifier
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<a href="http://doi.org/10.1002/cncr.33935" target="_blank" rel="noreferrer noopener">10.1002/cncr.33935</a>
Rights
Information about rights held in and over the resource
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).
2021
2021 Special Edition - Oncology
Bhatia S
Cancer
Davis ES
End-of-life Care
Hospice
Hurst G
Johnston EE
Martinez I
Palliative Care
Pediatric Cancer
-
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
A name given to the resource
2021 Special Edition 2 - Oncology
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/cncr.33546" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.33546</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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Quality Measures for End-Of-Life Care for Children with Cancer: A Modified Delphi Approach
Publisher
An entity responsible for making the resource available
Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
pediatrics; end-of-life care; quality measures; modified Delphi
Creator
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Johnston EE; Martinez I; Wolfe J; Asch SM
Description
An account of the resource
BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. METHODS: The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9-point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. RESULTS: The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. CONCLUSIONS: Expert panel-endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real-world application as a tool for standardizing EOL care in pediatric oncology. LAY SUMMARY: Quality measures for end-of-life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end-of-life care for children with cancer. The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/cncr.33546" target="_blank" rel="noreferrer noopener">10.1002/cncr.33546</a>
Rights
Information about rights held in and over the resource
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).
2021
2021 Special Edition - Oncology
Asch SM
Cancer
End-of-life Care
Johnston EE
Martinez I
modified Delphi
Pediatrics
quality measures
Wolfe J
-
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
A name given to the resource
August 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2021 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.042" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.07.042</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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To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; Humans; Bereavement; Pediatric oncology; Disclosure; Grief; End-of-life; Disclosure of information; Family caregiver
Creator
An entity primarily responsible for making the resource
Martinez I; Hoppmann A; Perna S; Byrd P; Wolfe J; Aye J; Johnston EE
Description
An account of the resource
Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more nuanced case-by-case approaches to disclosure of information to children. 1234 Here we present the case of Ari (names have been changed for confidentiality), a 10-year-old female with metastatic NUT (nuclear protein of the testis) carcinoma—a rare and aggressive tumor with poor prognosis, 5 , 6 —whose medical course was complicated by parental wishes to withhold diagnostic and prognostic information from their daughter. Coupled with an interview (for an unrelated, institutional review board–approved research study) with Ari's mother 9 months after her daughter's death, the medical team's experience highlights the complexity of navigating care for families who desire to withhold medical information from their child. We use this case as an opportunity to discuss the current literature on child and young adolescent preferences for disclosure of information and highlight existing guidelines around pediatric disclosure that can help clinicians when there are disagreements about pediatric disclosure.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.07.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.042</a>
Rights
Information about rights held in and over the resource
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).
2021
August 2021 List
Aye J
Bereavement
Byrd P
Child
Disclosure
Disclosure of information
end-of-life
family caregiver
Grief
Hoppmann A
Humans
Johnston EE
Journal of Pain and Symptom Management
Martinez I
Pediatric Oncology
Perna S
Wolfe J