To explore decisional regret of parents of extremely preterm babies and analyze neonatal, pediatric and parental factors associated with regret.
Parents of infants born <29 weeks' gestational age, aged between 18-months and 7-years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: "Knowing what you know now, is there anything you would have done differently?" Mixed methods were used to analyze responses.
248 parents (98% participation) answered and 54% reported they did not have regret. Of those who reported regret (n=113), three themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the NICU. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care, were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on head ultrasounds were less likely to report regret.
Approximately half of the parents of extremely preterm infants had regrets regarding their NICU stay. Causes of regret and guilt should be addressed and minimized.

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