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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
February 2024 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
February List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01302-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01302-5</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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Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; article; female; human; major clinical study; male; palliative therapy; hospice; uncertainty; school child; fetus; retrospective study; medical record review; infant; heart; hospital mortality; trisomy 18; prenatal period
Creator
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Bertaud S; Brightley G; Crowley N; Craig F; Wilkinson D
Description
An account of the resource
Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families throughout the antenatal period. Methods: A single-centre retrospective chart review of all antenatal referrals to a quaternary children's palliative care service over a 14-year period from 2007 to 2021. Results: One hundred fifty-nine antenatal referrals were made to the PPC team over a 14-year period, with increasing referrals over time. Referrals were made for a broad spectrum of diagnoses with cardiac conditions (29% of referrals) and Trisomy 18 (28% of referrals) being the most prevalent. 129 referrals had contact with the PPC team prior to birth and 60 had a personalised symptom management plan prepared for the baby prior to birth. Approximately one third (48/159) died in utero or were stillborn. Only a small number of babies died at home (n = 10) or in a hospice (n = 6) and the largest number died in hospital (n = 72). 30 (19% of all referrals) were still alive at the time of the study aged between 8 months and 8 years. Conclusions: Specialist PPC teams can play an important role in supporting families during the antenatal period following a diagnosis of a life-limiting fetal condition and demand for this service is increasing. A large proportion of the cases referred will not survive to the point of delivery and a number of babies may survive much longer than predicted. PPC teams can be particularly helpful navigating the uncertainty that exists in the antenatal period and ensuring that plans are made for the full spectrum of possible outcomes.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-023-01302-5" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01302-5</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
Article
Bertaud S
BMC Palliative Care
Brightley G
Child
Craig F
Crowley N
February List 2024
Female
Fetus
Heart
Hospice
Hospital Mortality
Human
Infant
Major Clinical Study
Male
Medical Record Review
Palliative Therapy
prenatal period
Retrospective Study
School Child
Trisomy 18
Uncertainty
Wilkinson D
-
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
June 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
June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000185?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S1744165X23000185?via%3Dihub</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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End of life care in the setting of extreme prematurity - practical challenges and ethical controversies
Publisher
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Seminars in Fetal and Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative care; Terminal Care; Decision-making; End of life; Neonatal; Intensive care; Premature infant
Creator
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Wilkinson DJ; Bertaud S
Description
An account of the resource
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely preterm infants in the delivery room and in the neonatal intensive care unit. We identify potential justifications for differences in the end of life care in this population as well as practical and ethical challenges.
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).
Identifier
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<a href="https://www.sciencedirect.com/science/article/pii/S1744165X23000185?via%3Dihub">10.1016/j.siny.2023.101442</a>
2023
Bertaud S
Decision-making
End Of Life
Intensive Care
June 2022 List
Neonatal
Palliative Care
Premature infant
Seminars in Fetal and Neonatal Medicine
Terminal Care
Wilkinson DJ
-
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/10.1016/j.siny.2023.101436" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.siny.2023.101436</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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Paediatric palliative care in the NICU: A new era of integration
Publisher
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Seminars in Fetal and Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
neonatal intensive care unit; palliative therapy; child; female; human; human experiment; infant; male; newborn; Palliative Care; review; skill; social needs; standard; terminal care
Creator
An entity primarily responsible for making the resource
Bertaud S; Montgomery AM; Craig F
Description
An account of the resource
We are entering a new era of integration between neonatal medicine and paediatric palliative care, with increasing recognition that the role and skills of palliative care extend beyond care of only the terminally ill infant. This paper addresses the principles of paediatric palliative care and how they apply in the NICU, considers who provides palliative care in this setting and outlines the key components of care. We consider how the international standards of palliative care pertain to neonatal medicine and how a fully integrated approach to care may be realised across these two disciplines. Palliative care is so much more than end-of-life care, offering a proactive and holistic approach which addresses the physical, emotional, spiritual and social needs of the infant and family. This is a truly interdisciplinary endeavour, relying on a harmonisation of the skills from both the neonatal and palliative care teams to deliver high-quality coordinated care.Copyright © 2023
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.siny.2023.101436" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101436</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
Bertaud S
Child
Craig F
Female
Human
Human Experiment
Infant
July List 2023
Male
Montgomery AM
Neonatal Intensive Care Unit
Newborn
Palliative Care
Palliative Therapy
Review
Seminars in Fetal and Neonatal Medicine
Skill
social needs
standard
Terminal Care
-
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 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
July 2021 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2021-321808" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2021-321808</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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Facilitators and barriers to the delivery of palliative care to children with life-limiting and life-threatening conditions: a qualitative study of the experiences and perceptions of healthcare 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
The topic of the resource
child; health services research; palliative care; qualitative research
Creator
An entity primarily responsible for making the resource
Mitchell S; Slowther AM; Coad J; Bertaud S; Dale J
Description
An account of the resource
OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care professionals. Data were analysed using thematic analysis. SETTING: Four regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018. PARTICIPANTS: Healthcare professionals (doctors, nurses and allied healthcare professionals) working in children's palliative care services. FINDINGS: A total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural 'collusion of immortality', where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in 'illuminating the blind spot' of palliative care as well as providing hands-on care. CONCLUSIONS: Palliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2021-321808" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2021-321808</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
Bertaud S
Child
Coad J
Dale J
Health Services Research
July 2021 List
Mitchell S
Palliative Care
Qualitative Research
Slowther AM