ArticlePediatric research2021
Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study.
Article in Pediatric research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses that pooled it.
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15 citing papers in PubMed, 2 syntheses or guidelines pooled it, 27 citations in OpenAlex.
- Mothers' experiences of feeding their premature infants after discharge from the hospital: a systematic review and thematic synthesis.International breastfeeding journal · 2026Pooled it
- Hospital-to-home transitions for children with medical complexity: part 1, a systematic review of reported outcomes.European journal of pediatrics · 2023Pooled it
- An Innovative Transitional Care Unit for Hospital to Home Transition of Children With Medical Complexity: A Qualitative Study of Parents' Experiences.Child: care, health and development · 2026Article
- Neonatal neurodevelopmental follow-up in the UK: a survey of current practice and future recommendations.BMC pediatrics · 2025Article
- Experiences of parents with very premature-born children at risk of neurodevelopmental disorders: A qualitative study.Nursing in critical care · 2025Article
- Variation in follow-up for children born very preterm in Europe.European journal of public health · 2024Article
- Maternal Wellbeing Five Years after a Very Preterm Delivery: Prevalence and Influencing Factors in a European Cohort.Children (Basel, Switzerland) · 2023Article
- Characteristics of Long-Stay Patients in a PICU and Healthcare Resource Utilization After Discharge.Critical care explorations · 2023Article
- Hospital-to-home transitions for children with medical complexity: part 2-a core outcome set.European journal of pediatrics · 2023Article
- Risk factors for cerebral palsy and movement difficulties in 5-year-old children born extremely preterm.Pediatric research · 2023Article
- Home Immunization with Palivizumab-A Randomized Pilot Study Describing Safety Aspects and Parents' Preferences.Children (Basel, Switzerland) · 2023Article
- Never-breastfed children face a higher risk of suboptimal cognition at 2 years of corrected age: A multinational cohort of very preterm children.Maternal & child nutrition · 2022Article
- Enhancing Parents' Well-Being after Preterm Birth-A Qualitative Evaluation of the "Transition to Home" Model of Care.International journal of environmental research and public health · 2022Article
- Parent priorities for research and communication concerning childhood outcomes following preterm birth.Wellcome open research · 2021Article
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11 authors at 20 institutions in 11 countries.
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Abstract
backgroundFollow-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.
methodsData 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.
resultsQuestionnaires 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.
conclusionsParents' 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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