Knowledge Bank

Background: Over 500,000 infants are admitted to neonatal intensive care units (NICUs) annually in the United States. NICU admissions are stressful for families, making decision-making about infant care challenging.

Methods: Parents of infants in a large Midwestern NICU were enrolled in a prospective, longitudinal study within the first week of hospitalization and followed for up to 12 weeks. Weekly surveys assessed whether parents felt they had made medical decisions, factors considered in decision-making, treatment goals, agreement levels with partners and healthcare teams, and distress levels.

Results: 76 mothers and 53 fathers of 79 infants participated. Mothers reported higher decision-making levels than fathers. Initially, about 50% of parents felt they had decided on their infant's care, decreasing to 35% of mothers and 12% of fathers over time. Most parents reported high agreement with partners and healthcare teams, but over 10% showed significant discrepancies. Key decision-making factors included doing what was best for the infant and considering future quality of life. During weeks when decisions were made, parents’ scores increased with a subset reporting moderate to severe depressive symptoms.

Conclusion: Understanding parental decision-making patterns in NICUs is crucial, as it relates to increased parental distress. In September 2024, the U.S. Surgeon General emphasized parent mental health as a national priority. Interventions supporting parental decision-making are needed to mitigate negative effects on parent distress. This study highlights the complexities of parental decision-making in NICUs and underscores the need for targeted support to improve outcomes for both infants and parents during this challenging time.