Abstract / Summary
Background: Although advances in neonatal care over the last two decades have improved survival among extremely preterm infants, neurodevelopmental disabilities remain a major concern with substantial uncertainty regarding long-term outcomes. Prognostic counselling at the limit of viability is therefore challenging, with divergent perspectives between parents and clinicians further contributing to this challenge. Objective: To examine parents’ retrospective interpretations of prognostic communication in the context of extreme prematurity and their experiences of long-term adaptation and perceived child well-being. Methods: This retrospective mixed-methods study interviewed parents of infants born at 23–25 weeks’ gestation, 5–10 years after discharge or death. Qualitative data were analysed using Braun and Clarke’s six-phase thematic approach and integrated with neonatal clinical data collected from medical records. Results: Fourteen parents participated. Five interrelated themes were identified: forged by adversity, enduring emotional toll, vertigo and decisional overload, limits of prognostic communication and long-term impact. Five of ten parents of surviving infants reported that early discussions were predominantly risk-focused and insufficiently addressed uncertainty or potential positive trajectories. Among seven infants classified as having severe neonatal morbidity at discharge, five were rated by their parents as having good or excellent current overall well-being at the time of interview. Among bereaved parents, three of four described meaning-making and personal transformation reflected in the theme ‘Forged by adversity’; these experiences may be consistent with aspects of post-traumatic growth, although post-traumatic growth was not formally assessed. Conclusions: Some parents perceived risk-focused prognostic communication as shaping aspects of their subsequent experience. Counselling that transparently presents risks while explicitly acknowledging uncertainty and developmental variability may better support families beyond the neonatal period.