Continuity and coordination of care during and after neonatal intensive care.

To assess parental experiences regarding the continuity and coordination of care in children suffering from long-lasting health problems during and after treatment at a Neonatal Intensive Care Unit (NICU), a cross-sectional survey was performed, using a validated tool to obtain continuity and coordination scores. Scores were collected among parents of four age groups: newborns at the NICU (n = 51), ex-NICU preschool children (n = 50), ex-NICU children in primary school (n = 53), and ex-NICU children in secondary school (n = 57). Overall, parents are least satisfied with the consistency of care concerning the specific needs of their children. Parents of children in primary school experience most problems, followed by parents of children in secondary school. Furthermore, parents had a positive opinion towards other continuity and coordination aspects. Our findings implicate that regular neonatal follow-up care should not be restricted to the first years of life, but should be extended to both primary school age, and secondary school age. In particular, health care providers have to be attentive to the changing needs of children during their development.