title: Parent Experience of Neonatal Encephalopathy.
abstract: 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.
authors.affiliation: 1 Division of Pediatric Neurology, Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA.|2 Division of Pediatric Neurology, Department of Pediatrics, Duke University Medical Center, Durham, NC, USA.|3 Neurosciences Intensive Care Nursery, Johns Hopkins Hospital, Baltimore, MD, USA.
authors.forename: Monica E
authors.initials: ME
authors.lastname: Lemmon
authors.affiliation: 4 Division of Neonatology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA.|5 Department of Population, Family, and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
authors.forename: Pamela K
authors.initials: PK
authors.lastname: Donohue
authors.affiliation: 3 Neurosciences Intensive Care Nursery, Johns Hopkins Hospital, Baltimore, MD, USA.|4 Division of Neonatology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA.
authors.forename: Charlamaine
authors.initials: C
authors.lastname: Parkinson
authors.affiliation: 3 Neurosciences Intensive Care Nursery, Johns Hopkins Hospital, Baltimore, MD, USA.|4 Division of Neonatology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA.
authors.forename: Frances J
authors.initials: FJ
authors.lastname: Northington
authors.affiliation: 4 Division of Neonatology, Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, MD, USA.|6 Johns Hopkins Berman Institute of Bioethics, Baltimore, MD, USA.
authors.forename: Renee D
authors.initials: RD
authors.lastname: Boss
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006117:Grief; D006801:Humans; D007036:Hypothermia, Induced; D020925:Hypoxia-Ischemia, Brain / Q000628:therapy*; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D010290:Parents / Q000523:psychology*; D055815:Young Adult
keywords: hypoxic-ischemic encephalopathy; neonatal encephalopathy; parent; therapeutic hypothermia