Parent Perceptions of Appearance in Seriously Ill Infants in the Neonatal Intensive Care Unit

Background: Parents of infants admitted to the neonatal intensive care unit (NICU) are often overwhelmed with distress. Infant appearance contributes to parent distress, but the meaning parents assign to their observations remains unclear. Objective: This study explored parents' thoughts about their infant's appearance during NICU admission. Design: The current question was asked as part of a broader prospective, longitudinal study that examined parent and nurse observations of infant condition and parent coping and distress. Participant data were captured each week they were enrolled (maximum 12 weeks). Setting/Subjects: Parents of infants admitted to a large level IV NICU in the Midwestern United States. Measurements: Each week parents were asked via paper-pencil survey to describe, "What is the most distressing thing you saw in your baby during the last week?" Handwritten responses were de-identified, transcribed, and analyzed using manifest content analysis. Comments were grouped by mothers and fathers for comparison. Results: A total of 78 mothers and 53 fathers of 82 infants completed the study. Three primary themes emerged: technology dependence, behaviors and symptoms, and physical appearance. Secondary themes of uncertainty, feelings of helplessness, lack of parental role attainment, and infant symptoms also caused distress. Parents understood there were benefits that outweighed the burdens of the treatments, and they sought to assign meaning to their experiences. Conclusions: Parents are distressed by their infant's physical appearance and their own emotional responses. Further research is needed to understand how distress affects decision-making, coping, and adjustment. Interventions to prepare parents for what they may observe in the NICU are recommended.