Lived realities of NICU-to-home transition in Malta: The experiences of parents of preterm infants, and of neonatal staff

Abstract

Preterm birth and the premature infant have been predominately studied from clinical perspectives. The experiences of parenting a preterm child and the experiences of staff directly involved in the care of preterm infants have been studied much less. Additionally, less is known about the meaning of experiences around the preterm infant’s discharge from the neonatal unit and life at home thereafter. This study addresses these gaps identified in research and aims to generate a deeper understanding of the meanings, and lived experiences of NICU-to-home transition from multiple perspectives: mothers and fathers, and neonatal staff.
This is a Heideggerian hermeneutic phenomenological study of the experiences of Maltese parents of preterm infants and, of neonatal staff of NICU-to-home transition. Using purposive sampling, open interviews were conducted with 9 mother-father dyads of preterm infants and 12 neonatal staff that included midwives, nurses and doctors working on the only neonatal unit in Malta. A modified vignette technique based on the parents’ interviews was used to stimulate reflective talk with the staff. A longitudinal design was adopted for data collection from the parents: at 1 month, 3 months and 6 months after discharge of their baby from the unit. The research process including analysis of the data was guided by van Manen (1990).
The parents’ experiences of NICU-to-home transition are represented through four main themes: ‘Shadowed by fading clouds of uncertainty’, ‘Reaching out’, ‘Watching vigilantly’ and ‘Living the new family’. In addition, three main themes emerged from the staff data: ‘Acknowledging good practice’, ‘Realising limits’ and ‘Awakening to needed improvements in care’. Findings indicate that, in the longer term in the home setting, parents translated their parenting approaches through the norms of neonatal unit routines and practices. Staff findings revealed that care focuses primarily on producing technically prepared parents in infant care which arises out of their sense of responsibility towards the babies’ wellbeing that extends to after being discharged from the neonatal unit.
A further in-depth interpretation and synthesis of the findings was undertaken drawing on the philosophy of Heidegger (1962). This revealed ‘oscillating realities’ between parents’ and staff experiences, particularly in the degree to which they endeavoured to solicitude which ‘leaped in’ or ‘leaped ahead’, and the extent to which technocratic ways of Being permeated their relationships to each other and to the babies. Implications of the findings and suggestions for further research are presented.