Parent Experience of Neonatal Encephalopathy: The Need for Family-Centered Outcomes

Monica E. Lemmon, Pamela K. Donohue, Charlamaine Parkinson, Frances J. Northington, Renee D. Boss

Research output: Contribution to journalArticlepeer-review

14 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)286-292
Number of pages7
JournalJournal of child neurology
Issue number3
StatePublished - Mar 1 2017


  • hypoxic-ischemic encephalopathy
  • neonatal encephalopathy
  • parent
  • therapeutic hypothermia

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Clinical Neurology


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