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

Area of Science:

• Perinatal Psychology
• Family Studies
• Developmental Psychology

Background:

• Premature birth presents unique challenges for infants and their families.
• The long-term developmental trajectory of preterm infants and its familial impact requires in-depth understanding.

Purpose of the Study:

• To explore the lived experience of parenting a preterm infant from birth through adolescence.
• To highlight the complex developmental journey of children born prematurely and its effect on the entire family system.
• To increase awareness of the enduring impact of premature birth on families.

Main Methods:

• Qualitative phenomenological approach utilizing semi-structured interviews.
• Retrospective in-depth narratives collected from seven mothers of adolescents born extremely low birth weight (ELBW) preterm.
• Thematic analysis of interview data by independent coders.

Main Results:

• Three distinct phases emerged: preterm birth, post-hospitalization, and adolescence.
• Eight core themes identified, including initial panic/fear, parental role alteration, fatigue, worry, need for support, adolescent fragility, overprotection, and post-traumatic personal growth.
• The experience of premature birth leaves lasting, vivid memories for parents.

Conclusions:

• The birth of a preterm infant has significant, long-lasting repercussions for the entire family.
• Healthcare professionals, particularly in neonatal intensive care units (NICUs), should recognize these enduring impacts.
• Interventions should focus on fostering parental resilience and personal growth to support families through the challenges of premature birth.