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Published on: November 20, 2015
Parent Experience of Neonatal Encephalopathy
Monica E Lemmon1,2,3, Pamela K Donohue4,5, Charlamaine Parkinson3,4
11 Division of Pediatric Neurology, Department of Neurology, Johns Hopkins School of Medicine, Baltimore, MD, USA.
Insights
Parents caring for infants with neonatal encephalopathy experience cumulative loss and grief, balancing family needs, and finding meaning as advocates. This research offers insights into the parent experience of neonatal encephalopathy care.
Area of Science:
- Neonatal medicine
- Pediatric neurology
- Parenting studies
Background:
- Neonatal encephalopathy (NE) is a serious condition affecting newborns.
- Understanding the parental experience is crucial for supportive care.
- Existing research often lacks depth on the lived experiences of parents with NE infants.
Purpose of the Study:
- To characterize the parent experience of caring for an infant with neonatal encephalopathy.
- To identify key themes in the parental journey from perinatal crisis to long-term care.
- To provide insights for developing parent-centered outcomes.
Main Methods:
- Mixed-methods study design.
- Semistructured interviews conducted with 20 parents of infants with NE.
- Data analyzed thematically to identify recurring experiences.
Main Results:
- Parents reported experiencing cumulative loss and grief across different care phases.
- Families navigated entangled infant and broader family needs.
- Parents evolved into advocates, finding meaning in their role.
Conclusions:
- Parenting an infant with NE involves profound emotional and practical challenges.
- The parental journey is characterized by loss, family integration, and advocacy.
- Parental insights are vital for developing effective, patient-centered care strategies.
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.
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