Parent Experience of Neonatal Encephalopathy.

Journal Article (Journal Article)

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.

Full Text

Duke Authors

Cited Authors

  • Lemmon, ME; Donohue, PK; Parkinson, C; Northington, FJ; Boss, RD

Published Date

  • March 2017

Published In

Volume / Issue

  • 32 / 3

Start / End Page

  • 286 - 292

PubMed ID

  • 27932597

Pubmed Central ID

  • PMC5309207

Electronic International Standard Serial Number (EISSN)

  • 1708-8283

Digital Object Identifier (DOI)

  • 10.1177/0883073816680747


  • eng

Conference Location

  • United States