Parental experiences of family-centred care from admission to discharge in the neonatal intensive care unit.

Abstract

It has been increasingly recognised that family-centred care (FCC) is associated with enhanced well-being for both parents and infants in paediatric settings, including the neonatal intensive care unit (NICU). Over the past 4 years, our NICU has increasingly adopted a collaborative philosophy of care. The purpose of the study was to examine parental experiences of FCC during both the admission and discharge time points in order to examine differences in parents' experiences and identify areas for improvement. We conducted interviews at two time points (admission and discharge) with 83 parents (mothers and fathers) of premature and medically fragile infants and analysed the data using thematic analysis. Three key themes (and sub-themes) were identified: disempowerment, hierarchy between parents and staff and the father's peripheral role. The themes were equally prevalent across admission and discharge. The challenges relating to FCC reported by parents at both admission and discharge represent some of the key barriers that parents still face in terms of being truly involved in the care of their infant in the NICU. Similar themes at both time points suggest that parents need equal amounts of support during their stay in NICU, irrespective of the level of care the infant is receiving and whether they are approaching discharge. Implications for improving FCC more generally are discussed.