Adapting to Uncertainty: A Mixed Methods Study of Parents Whose Infants are in the NICU for Reasons Other than Prematurity

Objectives: Parents of premature infants experience stress related to uncertainty. Less is known about the NICU experience of other parents. Our objectives were (1) describe the experience of parents whose infants are admitted to the NICU for reasons other than prematurity and (2) examine the impact of uncertainty and social factors. Study Design: Mixed-methods study utilizing interviews, surveys, and chart review to assess parent experience in relation to uncertainty and social factors. Results: 49 parents were enrolled. Themes included. 1. NICU Parents experienced uncertainty. Adaptation improved well-being. 2. Parents adapted by understanding their infant’s condition. While provider counseling helped parents adapt, uncertainty focused counseling increased distress. 3. Structural vulnerability impacted uncertainty. 4. Discrimination prevented adaptation. Conclusion: The NICU produces uncertainty for parents. Communicating a team lead, expertise, and interventional plans promoted adaptation. Parents with structural vulnerability use prior skills to manage uncertainty. Parents experiencing discrimination report alienation prevented adaptation.