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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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April 2023 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
April List 2023
URL Address
<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0041-1730916</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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Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease
Publisher
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Journal of Pediatric Intensive Care
Date
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2023
Subject
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intensive care unit; Palliative Care; child; article; female; human; major clinical study; male; newborn; retrospective study; advance care planning; palliative therapy; medical decision making; pediatrics; artificial ventilation; terminal care; hospitalization; information technology; hospital patient; patient referral; life sustaining treatment; congenital heart disease; consultation; mortality; pulmonary hypertension; infant; hospitalized child; length of stay; pediatric patient; extracorporeal oxygenation; disease course; cardiomyopathy; heart disease; catheterization; myocarditis; myopericarditis; pericarditis
Creator
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Green DJ; Bennett E; Olson LM; Wawrzynski S; Bodily S; Moore D; Mansfield KJ; Wilkins V; Cook L; Delgado-Corcoran C
Description
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Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.Copyright © 2023 Georg Thieme Verlag. All rights reserved.
Identifier
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<a href="http://doi.org/10.1055/s-0041-1730916" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1730916</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).
2023
Advance Care Planning
April List 2023
Article
Artificial Ventilation
Bennett E
Bodily S
Cardiomyopathy
Catheterization
Child
Congenital Heart Disease
Consultation
Cook L
Delgado-Corcoran C
Disease Course
extracorporeal oxygenation
Female
Green DJ
heart disease
Hospital Patient
Hospitalization
Hospitalized Child
Human
Infant
information technology
Intensive Care Unit
Journal of Pediatric Intensive Care
Length Of Stay
Life Sustaining Treatment
Major Clinical Study
Male
Mansfield KJ
Medical Decision Making
Moore D
Mortality
Myocarditis
myopericarditis
Newborn
Olson LM
Palliative Care
Palliative Therapy
Patient Referral
pediatric patient
Pediatrics
pericarditis
pulmonary hypertension
Retrospective Study
Terminal Care
Wawrzynski S
Wilkins V
-
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
May 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
May 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2021.0452" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2021.0452</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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An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Consultation; Extracorporeal membrane oxygenation; Pediatric palliative care; Survey
Creator
An entity primarily responsible for making the resource
Delgado-Corcoran C; Wawrzynski SE; Mansfield KJ; Flaherty B; DeCourcey DD; Moore D; Cook LJ; Ullrich CK; Olson LM
Description
An account of the resource
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective(s): Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Method(s): Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Result(s): Of 291 eligible respondents, 48% (n=140) completed the survey and 16% (n=47) answered an open-ended question. Benefits included support in decision-making (n=98; 70%) and identification of goals of care (n=89; 64%). Barriers included perception of giving up on families (n=59; 42%) and poor acceptability by other team members (n=58; 41%). Respondents endorsed communication with the primary ICU team before (n=122; 87%) and after (n=129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusion(s): Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2021.0452" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0452</a>
2022
Consultation
Cook LJ
DeCourcey DD
Delgado-Corcoran C
Extracorporeal Membrane Oxygenation
Flaherty B
Journal of Palliative Medicine
Mansfield KJ
May 2022 List
Moore D
Olson LM
Pediatric Palliative Care
Survey
Ullrich CK
Wawrzynski SE
-
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
Backlog
URL Address
<a href="http://doi.org/10.1097/PCC.0000000000000035" target="_blank" rel="noreferrer">http://doi.org/10.1097/PCC.0000000000000035</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
A name given to the resource
Parental Experiences and Recommendations in Donation After Circulatory Determination of Death
Publisher
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Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Creator
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Hoover SM; Bratton SL; Roach E; Olson LM
Description
An account of the resource
OBJECTIVE:: To describe parents' experience of organ donation decision making in the case of donation after circulatory determination of death. DESIGN:: Qualitative exploratory analysis. SETTING:: Participants were recruited from the ICU of a single children's hospital located in the western United States. PARTICIPANTS:: Thirteen parents, 11 families who consented to donate their child's organs. INTERVENTIONS:: Interviews (average 82 min). MEASUREMENTS AND MAIN RESULTS:: Transcribed interviews were analyzed using the constant comparative method to identify themes that reflected similarities in parents' experiences. The themes we found included 1) factors contributing to parental decision making, 2) under the circumstances of the child dying, and 3) donation decision and its impact on parental grief. Factors that influenced the decision making all related to the child dying, including protecting the child's body and helping the child to die peacefully. Finally, parents made recommendations about the organ donation process, including empathy, attend to end-of-life concerns, and the provision of relevant information for donation decisions. CONCLUSIONS:: Parents' decision making was related directly to end-of-life experience and grief process. Providers need to orient to parents' end-of-life concerns to support parents' decision-making process and improve donation after circulatory determination of death procedures.
2013-12
Identifier
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<a href="http://doi.org/10.1097/PCC.0000000000000035" target="_blank" rel="noreferrer">10.1097/PCC.0000000000000035</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).
Type
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Journal Article
2013
Backlog
Bratton SL
Hoover SM
Journal Article
Olson LM
Pediatric Critical Care Medicine
Roach E