Caregiver Engagement in the Neonatal Intensive Care Unit: Parental Needs, Engagement Milestones, and Action Priorities for Neonatal Healthcare of Preterm Infants

During the last few decades, healthcare interventions in Neonatal Intensive Care Units (NICUs) have improved, leading to higher survival rates even for high-risk preterm infants. Such advances have led to a reframing of NICU goals, from granting survival to severely ill preterm newborns, to sustaining quality of life of both infants and their parents. This has raised professionals’ acknowledgement of the importance of actively engaging parents in the care of their infant from the beginning as a critical feature of NICU healthcare (i.e. family-centred and developmental care). Nonetheless, these interventions have received only partial validation since NICUs from different countries might dramatically vary in the adopted policies of caregiver engagement and patents with a child in a NICU experience a dramatic psychological burden with regard to being engaged. In this chapter, the experience of preterm infants’ parents in the NICU is examined in the light of the Patient Health Engagement (PHE) model. The application of the PHE model to caregiver engagement in NICU has the advantage of taking into account the interwoven dynamic of both parental needs and NICU caregiver engagement interventions as they change from birth, across the NICU stay and after the discharge. Insights for neonatal health care practice will be provided.