Parental voice - what outcomes of preterm birth matter most to families?

Abstract

Neonatal follow-up studies traditionally report on long-term neurodevelopmental outcomes as a metric of success of neonatal intensive care. Research endpoints are also typically deficit-based, assessing whether disabilities, such as cerebral palsy, cognitive impairment, deafness or blindness, are present or not. These historical approaches have resulted in neonatal follow-up programs that narrowly focus on the early identification of neurodevelopmental problems, possibly to the detriment of other outcomes that matter to parents. This focus on neurodevelopmental disability may also contribute to the negative stereotypes associated with extreme preterm birth. In this article, we discuss parental perspectives regarding important long-term outcomes. We examine limitations with current definitions of outcomes and propose a strength-based approach to generate meaningful findings both for clinicians and families.