Function over diagnoses: parents of extremely preterm infants give recommendations to clinicians about their information needs

OBJECTIVES: Extremely preterm children may have a prolonged neonatal intensive care unit (NICU) stay. Their parents interact with clinicians both before and after birth. There is little information about parental satisfaction with the information received and what they would want to improve. The objective of this study was to explore parental perspectives regarding their information needs. METHODS: Over 1 year, parents of children born at <29 weeks' gestational age (GA), who were aged between 18 months and 7 years old and came for their follow-up visit were invited to participate. They were asked to answer this question in their own words: "Knowing what you know now, what do you wish doctors would have told you about prematurity before and/or after your child's birth?" Mixed method analysis included thematic analysis performed by a multidisciplinary group, including parents, and logistic regression to compare parental responses. RESULTS: Among parents (n=248, 98% of parents coming to follow-up), 45% were satisfied. When parents had recommendations, the main themes invoked improving communication about (1) preparing for discharge and life after the NICU in a stepwise, personalised and practical manner (40%), (2) more practical and functional information about being a parent in the NICU during the whole clinical trajectory (35%) and (3) more optimistic conversations with clinicians about the function of babies/families (as opposed to diagnoses) (26%). CONCLUSION: Although half the parents are satisfied with the information received, many recommended improvements in clinician-parent communication, mainly to make it more accessible, personalised, positive and practical.