Caring for a Preterm Infant during the First Six Months Post NICU Discharge: A Mother’s Perspective

Overview There are numerous studies in the current literature focusing on the intense emotions experienced by parents, following the birth of a preterm infant, (i.e., born prior to 37 weeks gestational age [GA]). Research findings have helped us understand the fear and anxiety they feel while attempting to navigate the neonatal intensive care unit (NICU) environment. What happens in those early weeks and months at home after discharge, however, is surprisingly absent from the literature. It is well known that preterm infants are readmitted to the hospital during the first few months after discharge at a rate of 10% - 35%, for an average 4.7 - 11.7 day stay and a cost of approximately $376 million (Underwood, 2007; Escobar, et al., 2005). The most common reasons for readmission are respiratory, feeding and jaundice problems (Spicer, et al., 2008; Underwood, 2007; Escobar, et al., 2005; Brissaud, et al., 2005). What we don’t yet know is what transpired during those early days and weeks at home and how mothers established their day-to-day routines. This missing information could foster a better understanding of family needs and promote the development of strategies to share with mothers prior to discharge, with the result being healthier transitions for both mothers and infants and a possible reduction in the inflated readmission rates for this cohort. The purpose of this research was to help bridge the gaps in the literature on the topic of transitioning a preterm infant to home following NICU discharge. Eight mothers who met the criteria of having a preterm infant born between 24 and 34 weeks GA, admitted to a NICU for a week or more, and who had been discharged to home for 6 months or less, were purposefully chosen from a convenience sample. Each mother was interviewed and asked to describe those first few months at home, e.g., how she met her infant’s needs, what she learned, and how she learned it. Two follow up questions were included and asked the mother what she would like us (HCPs) to know about her experience, and what she would say to other mothers whose infants were still in the NICU. Most mothers spoke at length of the fear they felt when bringing their infants home, and how inadequate they felt trying to provide care that had heretofore been provided by a team of specialists. They described the 2 difficulty and confusion associated with getting their infants to sleep in a quiet home environment until they thought to duplicate the noises of the NICU, and how the monitors, which all infants wore home from the NICU, were both friend and foe, alerting them to potential problems, but awakening the entire household in the process. Each mother also spoke of her determination to do whatever was necessary to ensure that her infant was not rehospitalized, and how thankful she was that her infant had made it to this point. Although each mother described a different approach to meeting the challenges associated with her infant, there was a consistency in the overall challenges each mother experienced. Most mothers wanted HCPs to know they were thankful for the part each had played in saving their infant’s life but they also wanted to impart their parental wisdom on the best ways to give information to a parent, the need for uniformity in what they called the “rules” of the NICU, and how a little encouragement from any HCP was sorely needed by most parents. These mothers were excited to be taking part in this study. They wanted to feel that something they saw, felt or did would make a difference for another mother with an infant in the NICU. Each thanked me for allowing them to share their experiences with me. The references for this document will appear at the end of each section