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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
A name given to the resource
July 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
July List 2023
URL Address
<a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/s-0043-1768488</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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Advance Care Planning and Parent-Reported End-of-Life Outcomes in the Neonatal Intensive Care Unit
Publisher
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American Journal of Perinatology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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advance care planning; neonatal intensive care unit; Advance Care Planning; article; child; decision making; expectation; human; infant; Infant Newborn; outcome assessment; rank sum test; satisfaction; shared decision making
Creator
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Lin M; Williams D; Vitcov G; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Description
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OBJECTIVE: This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in the neonatal intensive care unit (NICU). STUDY DESIGN: Single-center, cross-sectional mixed-methods survey study of bereaved parents who experienced the death of a child in the Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact test, and Wilcoxon rank-sum test were used to evaluate the relationship between ACP and parent-reported EOL outcomes. Qualitative content was analyzed through inductive coding. RESULT(S): A total of 40/146 (27%) of eligible parents responded to our survey. There was a significant association between ACP and improved EOL care processes and parental satisfaction with communication. Parents with ACP were more likely to report goal-concordant care and higher levels of perceived shared decision-making. Qualitatively, emerging themes in parents' descriptions of goal-concordant care included misaligned expectations and communication. Emerging themes for parental preparedness included infant symptoms, logistical aspects, impact on parents, and degrees of preparedness. For decisional regret, the primary theme was reevaluating supports. CONCLUSION(S): ACP is associated with improved EOL care outcomes and parents qualitatively conceptualize goal-concordant care, preparedness for their child's death, and decisional regret in nuanced ways. Families should have the opportunity to participate in ACP discussions that meet their unique communication and decision-making needs. KEY POINTS: . ACP is associated with improved parent-reported end-of-life outcomes.. . Parents conceptualize end-of-life care outcomes in nuanced ways.. . Families should have the opportunity to participate in ACP discussions that meet their unique needs..Copyright Thieme. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/s-0043-1768488" target="_blank" rel="noreferrer noopener">10.1055/s-0043-1768488</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).
2023
Advance Care Planning
American Journal of Perinatology
Article
Child
Cummings C
Decision Making
DeCourcey DD
Expectation
Human
Infant
Infant Newborn
July List 2023
Lin M
Neonatal Intensive Care Unit
outcome assessment
rank sum test
Satisfaction
Sayeed S
shared decision making
Vitcov G
Williams D
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
November 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
November 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2022.09.003" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2022.09.003</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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A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity
Publisher
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The Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Antenatal Consultation; Language; Periviability; Shared Decision Making
Creator
An entity primarily responsible for making the resource
Sullivan A; Arzuaga B; Luff D; Young V; Schnur M; Williams D; Cummings C
Description
An account of the resource
OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated gestation participated in post antenatal-counseling semi-structured interviews to explore preferred language and decision-making approaches of their antenatal counseling session. Interviews were audio-recorded and transcribed, and thematic analysis of the data was performed. RESULTS: Thirty-nine interviews were conducted representing 28 total prenatal consults. Analysis identified two overarching themes impacting the whole counseling experience: the need for reassurance and compassionate communication, while parents traveled along a dynamic decision-making journey they described as fluid and ever-changing. Related themes included: 1) Finding Balance: parents reported the importance of balancing positivity and negativity as well as tailoring the amount of information, 2) The Unspoken: parents described assumptions and inferences surrounding language, resuscitation options and values that can cloud the counseling process, 3) Making the Intangible Tangible: parents reported the importance of varied communication strategies, for example visuals to better anticipate and prepare, and 4) Team Synergism: Parents expressed desire for communication and consistency among and between teams which increased trust. CONCLUSIONS: parents facing extremely premature delivery generally did not report remembering specific terminology used during prenatal consultation, but rather how the language and counseling approach made them feel and affected the decision-making process. These findings have implications for further research and educational intervention design to improve clinicians' counseling practices to better reflect parental preferences and ultimately improve counseling outcomes.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2022.09.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.09.003</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).
Shared Decision Making
2022
antenatal consultation
Arzuaga B
Cummings C
Language
Luff D
November 2022 List
periviability
Schnur M
Sullivan A
The Journal Of Pediatrics
Williams D
Young 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
December 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
December List 2022
URL Address
<a href="http://doi.org/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-057824</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
The Case for Advance Care Planning in the NICU
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Case Planning; NICU; Decissional-Support; Advanced Care Planning; ACP; Newborn Period
Creator
An entity primarily responsible for making the resource
Lin M; Sayeed S; DeCourcey DD; Wolfe J; Cummings C
Description
An account of the resource
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those following unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families of such infants with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, or their surrogate decision-makers, in sharing values, goals, and preferences for future medical care, is recognized as a valuable strategy in supporting adults with serious and chronic illness. Although the role of ACP in older children and adolescents is evolving, its utility has not been systematically explored in the perinatal context. This article builds a case for formalizing a role for ACP in the NICU by defining ACP and appraising recent outcomes research, reviewing the current state of parental needs for decisional support and serious illness in the NICU, and describing how ACP may address current limitations in primary and specialty pediatric palliative care and challenges for decision-making in the newborn period.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2022-057824" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057824</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).
2022
ACP
advanced care planning
Case Planning
Cummings C
December List 2022
Decissional-Support
DeCourcey DD
Lin M
newborn period
Nicu
Pediatrics
Sayeed S
Wolfe J