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Lookup NU author(s): Professor Judith RankinORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2025 The Author(s). Child: Care, Health and Development published by John Wiley & Sons Ltd.Background: Parents and carers of children with congenital anomalies can experience stress when managing their child's healthcare needs. It is important that they are well supported. This study explored the support needs of parents/carers of children with a congenital anomaly across Europe. Methods: We developed a cross-sectional online survey to measure parents' experiences of support at diagnosis and in subsequent years. We recruited parents/carers of children (0–10 years) with cleft lip, congenital heart defect requiring surgery, Down syndrome and/or spina bifida, online via relevant organisations in 10 European countries (March–July 2021). Results: A total of 1109 parents/carers were recruited in Poland (n = 476), the United Kingdom (n = 120), Germany (n = 97), Belgium/Netherlands (n = 74), Croatia (n = 68), Italy (n = 59), other European countries (n = 92) and unspecified/non-European countries (n = 84). At diagnosis, only 27% (262/984) of parents/carers reported feeling well supported by HCPs, and 49% (468/959) reported that they would have liked professional psychological support but did not receive it. After diagnosis, satisfaction with support from HCPs differed significantly across countries, whereas satisfaction with support from participants' personal networks was more consistent. Conclusion: Our findings suggest that parents require greater support from HCPs at diagnosis, particularly psychological support. Further research in a European context is needed to understand what the barriers to support might be and how it may be integrated more effectively into existing healthcare systems.
Author(s): Marcus E, Latos-Bielenska A, Jamry-Dziurla A, Barisic I, Cavero-Carbonell C, DenHond E, Garne E, Genard L, Santos A, Lutke L, Dias C, Paramo-Rodriguez L, Pedersen C, Neville A, Niemann A, Odak L, Pierini A, Rissmann A, Rankin J, Morris J
Publication type: Article
Publication status: Published
Journal: Child: Care, Health and Development
Year: 2025
Volume: 51
Issue: 5
Print publication date: 01/09/2025
Online publication date: 01/09/2025
Acceptance date: 23/08/2025
Date deposited: 16/09/2025
ISSN (print): 0305-1862
ISSN (electronic): 1365-2214
Publisher: John Wiley and Sons Inc
URL: https://doi.org/10.1111/cch.70160
DOI: 10.1111/cch.70160
Data Access Statement: The datasets analysed during the current study are available from the corresponding author on reasonable request
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