Parent Experience Of Neonatal Encephalopathy: The Need For Family-centered Outcomes

Title

Parent Experience Of Neonatal Encephalopathy: The Need For Family-centered Outcomes

Creator

Lemmon M E; Donohue PK; Parkinson C; Northington FJ; Boss RD

Identifier

10.1177/0883073816680747

Publisher

Journal Of Child Neurology

Date

2017

Subject

2017; Anoxia; Hypoxic-ischemic Encephalopathy; Infant; Infant Newborn; Ischemia; Neonatal Development; Neonatal Encephalopathy; Parent; Therapeutic Hypothermia; Therapeutic Processes

Description

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)

Rights

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).

Citation List Month

May 2017 List

Citation

Lemmon M E; Donohue PK; Parkinson C; Northington FJ; Boss RD, “Parent Experience Of Neonatal Encephalopathy: The Need For Family-centered Outcomes,” Pediatric Palliative Care Library, accessed July 4, 2022, https://pedpalascnetlibrary.omeka.net/items/show/10834.

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