“Me Against the World”: Parental Uncertainty Management at Home Following Neonatal Intensive Care Unit Discharge

ABSTRACT

This study explored the uncertainty management processes experienced by parents at home following their child’s discharge from the neonatal intensive care unit (NICU). In-depth, semistructured interviews were conducted with 18 mothers and fathers whose children were cared for and “graduated” from NICU units in seven different hospitals from 6 to 183 days (M = 63.58 days). Interviews revealed three types of parental uncertainties: parental role shift, caring through equipment, and adherence to provider advice. Parents relied on three strategies to manage these uncertainties: reorientation, calibrating appropriate responses, and limiting exposure. Findings highlight how parental experiences, communication interactions, and expectations in the NICU complicate parental uncertainties postdischarge and negatively affect parental perceptions of self-efficacy, readiness, and competency. Our findings suggest that family-centered care can be enhanced by redefining discharge as an ongoing process that necessitates distinct uncertainty management practices to negotiate tensions between protecting preterm children and supporting parents.