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

doi:10.1038/s41390-020-01120-y

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 journal › Article › Academic › peer-review

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

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 language	English
Pages (from-to)	1004-1012
Number of pages	9
Journal	Pediatric Research
Volume	89
Issue number	4
Early online date	18 Sept 2020
DOIs	https://doi.org/10.1038/s41390-020-01120-y
Publication status	Published - Mar 2021

Keywords

BARRIERS
BIRTH-RATES
COUNTRIES
EXPERIENCES
OUTCOMES
QUALITY-OF-CARE
RISK
SATISFACTION
SERVICES

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Seppanen, A.-V., Sauvegrain, P., Draper, E. S., Toome, L., El Rafei, R., Petrou, S., Barros, H., Zimmermann, L. J. I., Cuttini, M., Zeitlin, J., & The SHIPS Research Group (2021). Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study. Pediatric Research, 89(4), 1004-1012. https://doi.org/10.1038/s41390-020-01120-y

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title = "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 birthsIn 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.",

keywords = "BARRIERS, BIRTH-RATES, COUNTRIES, EXPERIENCES, OUTCOMES, QUALITY-OF-CARE, RISK, SATISFACTION, SERVICES",

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

note = "Funding Information: The research received funding from the European Union{\textquoteright}s Horizon 2020 Research and Innovation Programme under grant agreement No. 633724. A.-V.S. has a doctoral contract funded by Sorbonne Universit{\'e} Coll{\`e}ge Doctoral, Paris, France. Publisher Copyright: {\textcopyright} 2020, International Pediatric Research Foundation, Inc.",

year = "2021",

month = mar,

doi = "10.1038/s41390-020-01120-y",

language = "English",

volume = "89",

pages = "1004--1012",

journal = "Pediatric Research",

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Seppanen, A-V, Sauvegrain, P, Draper, ES, Toome, L, El Rafei, R, Petrou, S, Barros, H, Zimmermann, LJI, Cuttini, M, Zeitlin, J & The SHIPS Research Group 2021, 'Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement: a European cohort study', Pediatric Research, vol. 89, no. 4, pp. 1004-1012. https://doi.org/10.1038/s41390-020-01120-y

TY - JOUR

T1 - Parents' ratings of post-discharge healthcare for their children born very preterm and their suggestions for improvement

T2 - a European cohort study

AU - Seppanen, Anna-Veera

AU - Sauvegrain, Priscille

AU - Draper, Elizabeth S.

AU - Toome, Liis

AU - El Rafei, Rym

AU - Petrou, Stavros

AU - Barros, Henrique

AU - Zimmermann, Luc J. I.

AU - Cuttini, Marina

AU - Zeitlin, Jennifer

AU - The SHIPS Research Group

N1 - Funding Information: The research received funding from the European Union’s Horizon 2020 Research and Innovation Programme under grant agreement No. 633724. A.-V.S. has a doctoral contract funded by Sorbonne Université Collège Doctoral, Paris, France. Publisher Copyright: © 2020, International Pediatric Research Foundation, Inc.

PY - 2021/3

Y1 - 2021/3

N2 - 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 birthsIn 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.

AB - 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 birthsIn 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.

KW - BARRIERS

KW - BIRTH-RATES

KW - COUNTRIES

KW - EXPERIENCES

KW - OUTCOMES

KW - QUALITY-OF-CARE

KW - RISK

KW - SATISFACTION

KW - SERVICES

U2 - 10.1038/s41390-020-01120-y

DO - 10.1038/s41390-020-01120-y

M3 - Article

C2 - 32947602

SN - 0031-3998

VL - 89

SP - 1004

EP - 1012

JO - Pediatric Research

JF - Pediatric Research

IS - 4

ER -

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

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Keywords

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