“Sink or swim”: mothers' experiences of extremely preterm infants after 15 years from birth

Abstract

Objectives

To evaluate the experience of parenting a preterm infant from birth to adolescence and to raise awareness of the complexity of premature birth and the child's subsequent developmental journey for the entire family.

Study design

A phenomenological, qualitative approach using semi-structured interviews with open-ended questions was adopted to obtain retrospective, in-depth narratives. Seven mothers of adolescents born preterm with extremely low birth weight (ELBW) and admitted to a neonatal intensive care unit (NICU) participated in the study. Interviews were conducted by a trained researcher in qualitative methods, and independent coders performed data analysis.

Results

Three phases and eight core themes, chronologically organized, emerged from the thematic analysis: starting from preterm birth (panic, fear and uncertainty; hope and a positive attitude to the future; altered parental role), transitioning to life after hospitalization (fatigue and worry about an uncertain future; need of support), and extending into adolescence (adolescents' fragility; overprotection; post-traumatic personal growth).

Conclusions

The birth of a preterm baby has significant repercussions for the entire family, not only in the period immediately following birth but also for many years afterwards, as the traumatic event is retraced with memories that remain both painful and vivid. These findings should be acknowledged by professionals working in the NICU to foster the development of targeted interventions that help parents build resilience, including from a personal growth perspective.