Looking beyond diagnoses to functioning: using the F words and personalizing care in neonatology.

Abstract

Extreme prematurity is associated with significant risk of mortality and morbidities. Neonatal follow-up assesses health outcomes of babies as they grow older to improve care and contribute to research and quality improvement initiatives. Recent investigations demonstrate that parents and clinicians/researchers disagree about what is defined as a "severe outcome". Families report they need balanced information about functioning rather than medical diagnoses. Many functional domains other than the presence/absence of impairment are not evaluated during neonatal follow-up. This article recommends how to shift communication with parents of preterm infants throughout the NICU hospitalization - from discussions that are medicalized and deficit-based to those that reflect the processes of growth and development. This includes understanding family-important outcomes and how to communicate with parents using the 'F-words' for child development based on the World Health Organization's integrated biopsychosocial framework for health: Functioning, Family, Fitness, Fun, Friends, and Future.