Parental Perspectives on Development in Children Born Extremely Preterm

Objectives: To understand how parents form assessments of their children's development following discharge from the neonatal intensive care unit (NICU), and to explore why these assessments may differ from the physicians' assessments. Study design: We used semi-structured interviews to explore where parents obtained information about development and how they integrated that information to form an overall appraisal of their child's developmental status. Results: Based on 23 interviews with parents, we learned that discharge from the NICU demarcated 2 separate phases of appraising development. In the NICU, most parents reported simultaneously recognizing that sequelae of prematurity would likely persist beyond discharge and chose to see discharge as an end point. Following discharge, parents often assessed their child's status with an emphasis on progress rather than comparison with age-matched peers. In both phases, parents preferred information that was positive and actionable regarding development. Parents integrated external information with their own observations of their child in forming an overall appraisal of their child's development. Parents' ideas about their child's development were intertwined with their assessments of their own and their family's coping. Conclusions: An understanding of how families' assessments diverge from medical ones creates opportunity to align better with these measures and support parents. If researchers integrate parents’ perspectives on development, that could lead to the development of meaningful metrics.