Introduction: Introduction: Parents of extremely preterm children face many challenges and uncertainties. The information and support provided by clinicians -both before and after birth- is invaluable although rarely evaluated.
Aim: To explore the needs of parents of extremely preterm infants.
Methods: 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. 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?” Qualitative methodology was used by two reviewers to independently analyze the answers; discrepancies were resolved by a third reviewer.
Results: Nearly half (45%) of the 249 parents (98% participation rate) were satisfied with the medical information and support they received during their stay at the hospital. Parents (14%) wished for clinicians to be more optimistic and to give them hope: “Before birth, I would have liked to know that most micro preemies do well”. Furthermore, 17% felt that practical information on what to expect after their child’s hospital discharge could have been provided and 14% wished they had known more about resources for parent support. Finally, 14% reported the need for a good communication style including active listening skills and use of clear language: “I feel like I wasn’t listened to”.
Conclusion: Although half the parents are satisfied with information and support received, the other half recommends improvements in clinician-parent communication, mainly to make it more accessible, positive and practical.
Aurelie Fortin– Medical student, CHU Sainte-Justine Research Center, Montreal, Canada
Rebecca Pearce– Parent/Graduate Student, CHU Sainte-Justine/McGill University
Magdalena Jaworski– Doctor, CHU Sainte-Justine Research Center, Montreal, Canada
Claude-Julie Bourque– Researcher in clinical ethics, CHU Sainte-Justine Research Center, Montreal, Canada
Thuy Mai Luu– Clinician-scientist and Pediatrician, CHU Sainte-Justine
Annie Janvier– Neonatologist and Clinical Researcher, CHU Sainte-Justine Research Center, Montreal, Canada