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

Abstract : 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 <32 weeks' gestation in 19 regions from 11 European countries. Perinatal data were collected from medical records and 5-year data from parent-report questionnaires. Parents rated post-discharge care related to their children's preterm birth (poor/fair/good/excellent) and provided free-text suggestions for improvements. We analyzed sociodemographic and medical factors associated with poor/fair ratings, using inverse probability weights to adjust for attrition bias, and assessed free-text responses using thematic analysis. Results: Questionnaires were returned for 3635 children (53.8% response rate). Care was rated as poor/fair for 14.2% [from 6.1% (France) to 31.6% (Denmark)]; rates were higher when children had health or developmental problems (e.g. cerebral palsy (34.4%) or epilepsy (36.9%)). From 971 responses, 4 themes and 25 subthemes concerning care improvement were identified. Conclusions: Parents' experiences provide guidance for improving very preterm children's post-discharge care; this is a priority for children with health and developmental problems as parental dissatisfaction was high. Impact: 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.
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https://www.hal.inserm.fr/inserm-03168758
Contributor : Anna-Veera Seppanen <>
Submitted on : Sunday, March 14, 2021 - 12:09:55 PM
Last modification on : Wednesday, June 2, 2021 - 4:26:04 PM
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Anna-Veera Seppanen, Priscille Sauvegrain, Elizabeth Draper, Liis Toome, Rym El Rafei, et al.. Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study. Pediatric Research, Nature Publishing Group, 2020, 139 (1), pp.e20151175. ⟨10.1038/s41390-020-01120-y⟩. ⟨inserm-03168758⟩

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