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 2011–2014. Thematic saturation was achieved after 20 interviews. Parent experience of caring for a child with neonatal encephalopathy was characterized by 3 principle 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.

Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study

“…For many parents of infants with HIE, an unexpected perinatal crisis occurred after a relatively normal pregnancy taken to term. Infants are often transferred to facilities away from the mother, who may be dealing with her own health complications (44). Existing data suggest that communication challenges, including fragmented communication, difficulty processing complex medical information, and prognostic uncertainty, may be amplified for parents with HIE (45,46).…”

Exploring parent expectations of neonatal therapeutic hypothermia

“…In the United States, one study investigated specific aspects of communication about TH and described three themes; fragmented communication, inherent challenges of discussing a complex therapy and uncertainty of infant prognosis [5]. In a second publication addressing the longer-term experience of these same parents, three additional themes of longitudinal grief, “entangled infant and family interests” and parents becoming advocates were described [6]. Much of the qualitative research thus far has focused on the emotional disruption parents experience when the unanticipated event of a traumatic delivery occurs or communication challenges, whereas our research focused on parent expectations surrounding TH.…”

Parent preferences for neurodevelopmental screening in the neonatal intensive care unit

“…Our prior work with NICU parents suggests that not all families welcome information about long-term outcomes during acute hospitalizations. 10 Their infants may still be critically ill with uncertain survival to discharge, or parents themselves may have acute stress disorders that could affect understanding of complex information. 11 Here, we aimed to identify whether, and how, parents of children in NICUs want to receive information on disability risk from early neurodevelopmental screening.…”