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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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December 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.
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December 2021 List
URL Address
<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/08830738211045238</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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Neuropalliative Care for Neonates
Publisher
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Journal of Child Neurology
Date
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2021
Subject
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infant; neonate; neuropalliative care; pediatric; preterm; quality of life
Creator
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Rent SM; Bidegain M; Bost MH; Hornik C; Lemmon ME
Description
An account of the resource
Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.
Identifier
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<a href="http://doi.org/10.1177/08830738211045238" target="_blank" rel="noreferrer noopener">10.1177/08830738211045238</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
Bidegain M
Bost MH
December 2021 List
Hornik C
Infant
Journal of Child Neurology
Lemmon ME
Neonate
neuropalliative care
Pediatric
preterm
Quality Of Life
Rent SM
-
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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November 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
November 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-322147" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-322147</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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Individualised decision making: interpretation of risk for extremely preterm infants-a survey of UK neonatal professionals
Publisher
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Archives of disease in childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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ethics; neonatology; perinatal; preterm; resuscitation
Creator
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Wood K; Di Stefano LM; Mactier H; Bates SE; Wilkinson D
Description
An account of the resource
BACKGROUND: The British Association of Perinatal Medicine (BAPM) published a revised framework for perinatal management of extremely preterm infants (EPIs) in 2019. We aimed to assess UK neonatal professionals' interpretation of elements of this framework, as well as the consistency of their estimates of outcome for EPIs. METHOD(S): An online survey gave participants five cases involving anticipated extremely preterm birth with different favourable and unfavourable risk factors. Respondents were asked to assign a risk category and management option using the BAPM framework and to estimate the chance of survival if the baby received active resuscitation and the chance of severe disability if they survived. RESULT(S): Respondents were consistent in interpretation of risk categories. The majority would follow parental wishes about management. Management decisions did not always correspond with risk assessment, with less inclination to recommend palliative (comfort) care. There were wide estimates of survival or severe disability (5%-90%) with consultants providing lower estimates of severe disability than other groups. CONCLUSION(S): UK neonatal professionals deferred to parental wishes in the cases presented, indicating an emphasis on shared decision making. However, they did not necessarily use the risk stratification approach for management decisions. Variation in estimates of outcome raises questions about the accuracy of informed decision making and suggests support is needed for UK clinicians to incorporate risk factors into individualised counselling. There may be value in validating existing online risk calculators for UK infants or in developing a UK specific risk model. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2021-322147" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-322147</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
Archives of Disease in Childhood
Bates SE
Di Stefano LM
Ethics
Mactier H
Neonatology
November 2021 List
Perinatal
preterm
Resuscitation
Wilkinson D
Wood K
-
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 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pediatrneurol.2020.08.002</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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Characterization of Death in Infants With Neonatal Seizures
Publisher
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Pediatric Neurology
Date
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2020
Subject
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epilepsy; hospice; neonate; neurocritical care; neurology; palliative care; preterm
Creator
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Lemmon ME; Bonifacio SL; Shellhaas RA; Wusthoff CJ; Greenberg RG; Soul JS; Chang T; Chu CJ; Bates S; Massey SL; Abend NS; Cilio MR; Glass HC
Description
An account of the resource
Background: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Method(s): This was a prospective, observational cohort study of neonates with seizures treated at seven sites of the Neonatal Seizure Registry. We characterized the mode of death, evaluated the association between infant characteristics and mode of death, and evaluated predictors of death or transfer to hospice. Result(s): We enrolled 611 consecutive neonates with seizures, and 90 neonates (15%) died before hospital discharge at a median age of 11 days (range: 1 to 163 days); 32 (36%) died in the first postnatal week. An additional 19 neonates (3%) were transferred to hospice. The most common mode of in-hospital death was death after extubation amidst concerns for poor neurological prognosis, in the absence of life-threatening physiologic instability (n = 43, 48%). Only one infant died while actively receiving cardiopulmonary resuscitation. In an adjusted analysis, premature birth (odds ratio: 3.06, 95% confidence interval 1.59 to 5.90) and high seizure burden (odds ratio: 4.33, 95% confidence interval 1.88 to 9.95) were associated with increased odds of death or transfer to hospice. Conclusion(s): In a cohort of neonates with seizures, death occurred predominantly after decisions to withdraw or withhold life-sustaining intervention(s). Future work should characterize how these decisions occur and develop optimized approaches to support families and clinicians caring for newborns with seizures. Copyright © 2020 Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.pediatrneurol.2020.08.002" target="_blank" rel="noreferrer noopener">10.1016/j.pediatrneurol.2020.08.002</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
Abend NS
Bates S
Bonifacio SL
Chang T
Chu CJ
Cilio MR
December 2020 List
Epilepsy
Glass HC
Greenberg RG
Hospice
Lemmon ME
Massey SL
Neonate
Neurocritical care
Neurology
Palliative Care
Pediatric Neurology
preterm
Shellhaas RA
Soul JS
Wusthoff CJ