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Dublin Core
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Title
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April 2021 List
Text
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Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1093/pch/pxz089</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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Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Publisher
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Paediatrics & Child Health
Date
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2021
Subject
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Infant; Program Evaluation; Referral and Consultation; Terminal Care; Human; Descriptive Statistics; Perinatal Care; Prenatal Diagnosis; Retrospective Design; Record Review; Work Experiences; Gestational Age; Perinatal Death; Palliative Care -- In Infancy and Childhood; Treatment Outcomes; Neonatologists; Central Nervous System Diseases; Early Intervention; Infant High Risk
Creator
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Doherty ME; Power L; Williams R; Stoppels N; Grandmaison Dumond L
Description
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Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.
Identifier
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<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz089</a>
Rights
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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).
2021
April 2021 List
Central Nervous System Diseases
Descriptive Statistics
Doherty ME
Early Intervention
Gestational Age
Grandmaison Dumond L
Human
Infant
Infant High Risk
Neonatologists
Paediatrics & Child Health
Palliative Care -- In Infancy and Childhood
Perinatal Care
Perinatal Death
Power L
Prenatal Diagnosis
Program Evaluation
Record Review
Referral And Consultation
Retrospective Design
Stoppels N
Terminal Care
Treatment Outcomes
Williams R
Work Experiences