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

• Autor(a) principal: Seppänen, AV
• Data de Publicação: 2021
• Outros Autores: Sauvegrain, P, Draper, ES, Toome, L, El Rafei, R, Petrou, S, Barros, H, Zimmermann, LJI, Cuttini, M, Zeitlin, J, SHIPS Research Group
• Tipo de documento: Artigo
• Idioma: eng
• Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
• Texto Completo: https://hdl.handle.net/10216/149513

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.