Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study.
Anna-Veera SeppänenPriscille SauvegrainElizabeth S DraperLiis ToomeRym El RafeiStavros PetrouHenrique BarrosLuc J I ZimmermannMarina CuttiniJennifer Zeitlinnull nullPublished in: Pediatric research (2020)
In a European population-based very preterm birth cohort, parents rated post-discharge healthcare as poor or fair for 14.2% of children, with a wide variation (6.1-31.6%) between countries. Dissatisfaction was reported in over one-third of cases when children had health or developmental difficulties, such as epilepsy or cerebral palsy. Parents' free-text suggestions for improving preterm-related post-discharge healthcare were similar across countries; these focused primarily on better communication with parents and better coordination of care. Parents' lived experiences are a valuable resource for understanding where care improvements are needed and should be included in future research.