26 Not What Clinicians Thought: Decisional Regret in Parents of Extremely Preterm Children

Abstract

Abstract Background Preterm birth is associated with higher risk of death and severe neurodevelopmental impairment. There is an increased risk in extremely preterm infants, raising questions among ethicists and clinicians as to whether providing active care to infants born at the lower extreme is worth the outcomes, and if these outcomes are a source of decisional regrets for parents. Objectives Explore decisional regrets in parents of extremely preterm children. Design/Methods We consecutively recruited all parents of infants born <29 weeks’ gestational age, aged between 18 months corrected age and 7 years, and seen for neonatal follow-up at a single tertiary center over a one-year period. We asked the following question: “Knowing what you know now, is there anything you would have done differently?” Answers were analyzed independently by two reviewers using qualitative methodology, and discrepancies were resolved by a third reviewer. Mixed methods were used to examine the frequency of each theme and associate parental answers to demographic and clinical factors. Results Responses were obtained from 249 parents (98% participation rate). The following main themes emerged: (1) Nothing – I did what I could or was told to do: 53%; (2) Regrets about self-care: 31%; “I would listen to the nurses’ advice to sleep more” (3) Guilt related to the impression preterm labor could have been prevented by them or the medical team: 19%; “I would have pushed for better care and monitoring during pregnancy. I felt as though I wasn’t listened to when I thought I was in labour when sure enough I was” (4) Regrets about parental role in decision-making: 15%; “I would speak up more at the beginning of the hospitalisation”. None of the parents reported on regretting any life-and-death decisions they made at birth and in the neonatal unit. Conclusion In our cohort, more than half of parents of surviving preterm infants did not have any regrets associated to their NICU experience. However, lessons can be learned to improve parental support, self-care and solutions to improve their role as parents. Unlike what can be stated using “opinion-based medicine”, limiting or forgoing intensive care is not a solution to eliminate decisional regrets in parents.