Health outcomes after premature birth: what matters to parents and families?

Dr. Annie Janiver is a neonatologist (pediatrician who takes care of sick babies) and a researcher. She is also the mother of 3 children, 2 of which were very sick. Violette was born at 24 weeks. With our research team, we have examined parent important outcomes. They contrast with what doctors and researchers think are important. For example, the way we measure success in Neonatology is "intact survival". We (clinicians and researchers) have decided how to classify children according to levels of disability we have chosen, based on our values and what we think is important. When we ask families about what is important, they often do not agree with us and are concerned about many things that we do not measure. We clinicians, researcher and families will suggest ways to think about these issues and change the way we do research in the future. Following this webinar, participants will be able to: describe the risks associated with neonatal intensive care admission understand what is measured during neonatal follow up reflect on parent and family important outcomes and how these are essential to optimize care