What is and what should be: Maternal perceptions of their roles in the NICU

Increasing numbers of medically fragile, premature infants are surviving and being discharged home. For mothers to prepare for discharge, caregiving activities must be mastered as well as learning to communicate with medical professionals in the neonatal intensive care unit (NICU). This case study of seven mothers of medically fragile, premature infants utilized multiple data sources (interviews, observations of the unit, and document review) to examine maternal roles in a Level III NICU in an urban, teaching hospital. In terms of caregiving, mothers progressively assumed the roles of worrier, novice, learner, and expert. In the context of communication with NICU medical professionals, mothers assumed roles of decision maker, information collector, and advocate and negotiator. Implications of these roles for future research and practice are discussed.