Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study

Anna-Veera Seppanen*, Priscille Sauvegrain, Elizabeth S. Draper, Liis Toome, Rym El Rafei, Stavros Petrou, Henrique Barros, Luc J. I. Zimmermann, Marina Cuttini, Jennifer Zeitlin, The SHIPS Research Group

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Background Follow-up of very preterm infants is essential for reducing risks of health and developmental problems and relies on parental engagement. We investigated parents' perceptions of post-discharge healthcare for their children born very preterm in a European multi-country cohort study. Methods Data come from a 5-year follow-up of an area-based cohort of births

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.

Original languageEnglish
Pages (from-to)1004-1012
Number of pages9
JournalPediatric Research
Issue number4
Early online date18 Sep 2020
Publication statusPublished - Mar 2021


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