Parent Experience of Neonatal Encephalopathy

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.