58 Predicting and Preparing for the Future: Parents of Extremely Preterm Infants Give Recommendations to Clinicians

Abstract

Abstract Background Parents of extremely preterm children face many challenges and uncertainties. The information and support provided by clinicians—both before and after birth—is invaluable to help them prepare for the future. Objectives To explore the information needs of parents of extremely preterm infants, before birth, in the NICU, and at discharge. Design/Methods In 2021, all parents of infants born <29 weeks’ gestational age and seen for neonatal follow-up between the ages of 18 months and 7 years were consecutively recruited over a one-year period in a large academic centre. Parents were asked: “Knowing what you know now, what do you wish doctors would have told you about prematurity before and/or after your child's birth?” Answers were analyzed using mixed methods. Results Nearly half (45%) of the 249 parents (98% participation rate) were satisfied with the medical information and support they received, either before or after birth. Prenatally, 16% felt that more practical information was needed in terms of the function of babies born preterm (not only diagnoses), and some parents would have liked prematurity to be mentioned in their normal pregnancy follow-up. 19% of parents wanted to know more about the life trajectory of babies in the NICU, along with knowing what was “the next step”, and how they could be part of the team to help their baby (“What are the different steps during the stay?” and ”How we can help as parents”. 22% wished discharge to be improved, to be better prepared for the future: e.g., “BPD does not help. We would have liked to know what leaving on oxygen meant, that she should not go to daycare, the risk with infections, RSV shots, sleeping problems many preemies have. This could have been done weeks before we left the hospital”. 14% wished they had known more about resources for psychosocial support. Parents (14%) wished clinicians to be more optimistic and provide them with hope: e.g., “Before birth, I would have liked to know that most micro preemies do well”. Conclusion Although half the parents were satisfied with the information and support they received, the other half recommended improvements, mainly to make our communication positive and practical. Diagnoses did not help parents prepare for the future prenatally, in the NICU, or at discharge, but information on function and what parents could do to assist (in a practical fashion) did.