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Text
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Citation List Month
May 2017 List
Dublin Core
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Title
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Parent Experience Of Neonatal Encephalopathy: The Need For Family-centered Outcomes
Publisher
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Journal Of Child Neurology
Date
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2017
Subject
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2017; Anoxia; Hypoxic-ischemic Encephalopathy; Infant; Infant Newborn; Ischemia; Neonatal Development; Neonatal Encephalopathy; Parent; Therapeutic Hypothermia; Therapeutic Processes
Creator
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Lemmon M E; Donohue PK; Parkinson C; Northington FJ; Boss RD
Description
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We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014. Thematic saturation was achieved after 20 interviews. Parent experience of caring for a child with neonatal encephalopathy was characterized by 3 principal themes. Theme 1: Many families described cumulative loss and grief throughout the perinatal crisis, critical neonatal course, and subsequent missed developmental milestones. Theme 2: Families experienced entangled infant and broader family interests. Theme 3: Parents evolved into and found meaning in their role as an advocate. These data offer insight into the lived experience of parenting an infant with neonatal encephalopathy. Primary data from parents can serve as a useful framework to guide the development and interpretation of parent-centered outcomes. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Identifier
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10.1177/0883073816680747
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).
2017
Anoxia
Boss RD
Donohue PK
Hypoxic-ischemic Encephalopathy
Infant
Infant Newborn
Ischemia
Journal of Child Neurology
Lemmon M E
May 2017 List
Neonatal Development
Neonatal Encephalopathy
Northington FJ
Parent
Parkinson C
Therapeutic Hypothermia
Therapeutic Processes