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Support Needs of Parents of Children With Congenital Anomalies Across Europe: A EUROlinkCAT Survey

2025-09-05Artigo científico Acesso restrito
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dc.contributor.authorMarcus, Elena
dc.contributor.authorLatos-Bielenska, Anna
dc.contributor.authorJamry-Dziurla, Anna
dc.contributor.authorBarišić, Ingeborg
dc.contributor.authorCavero-Carbonell, Clara
dc.contributor.authorDen Hond, Elly
dc.contributor.authorGarne, Ester
dc.contributor.authorGenard, Lucas
dc.contributor.authorSantos, Ana João
dc.contributor.authorLutke, L Renée
dc.contributor.authorDias, Carlos Matias
dc.contributor.authorPáramo-Rodríguez, Lucía
dc.contributor.authorPedersen, Christina Neergaard
dc.contributor.authorNeville, Amanda J.
dc.contributor.authorNiemann, Annika
dc.contributor.authorOdak, Ljubica
dc.contributor.authorPierini, Anna
dc.contributor.authorRissmann, Anke
dc.contributor.authorRankin, Judith
dc.contributor.authorMorris, Joan K.
dc.date.accessioned2026-02-20T14:38:03Z
dc.date.available2026-02-20T14:38:03Z
dc.date.issued2025-09-05
dc.description.abstractBackground: 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.eng
dc.description.abstractSummary: - This study found a high level of unmet psychological support for parents of children with congenital anomalies at diagnosis. - Implementing routine screening for psychological distress at the time of a child's diagnosis of a congenital anomaly could help identify parents in need of additional psychosocial support. - Further research exploring the barriers and facilitators to psychological support for families in Europe would be beneficial.eng
dc.description.sponsorshipThis project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 733001.
dc.identifier.citationChild Care Health Dev. 2025 Sep;51(5):e70160. doi: 10.1111/cch.70160
dc.identifier.doi10.1111/cch.70160
dc.identifier.issn0305-1862
dc.identifier.pmid40908890
dc.identifier.urihttp://hdl.handle.net/10400.18/10967
dc.language.isoen
dc.peerreviewedyes
dc.publisherWiley
dc.relationEUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies
dc.relation.hasversionhttps://onlinelibrary.wiley.com/doi/10.1111/cch.70160
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/
dc.subjectCongenital Anomaly
dc.subjectPaediatric
dc.subjectParents
dc.subjectSupport Needs
dc.subjectSurvey
dc.subjectEurope
dc.subjectRegistos Epidemiológicos
dc.subjectAnomalias Congénitas
dc.titleSupport Needs of Parents of Children With Congenital Anomalies Across Europe: A EUROlinkCAT Surveypor
dc.typejournal article
dspace.entity.typePublication
oaire.awardTitleEUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies
oaire.awardURIinfo:eu-repo/grantAgreement/EC/H2020/733001/EU
oaire.citation.issue5
oaire.citation.startPagee70160
oaire.citation.titleChild: Care, Health and Development
oaire.citation.volume51
oaire.fundingStreamH2020
oaire.versionhttp://purl.org/coar/version/c_970fb48d4fbd8a85
project.funder.identifierhttp://doi.org/10.13039/501100008530
project.funder.nameEuropean Commission
relation.isProjectOfPublication97315a90-2dd0-46d9-8b7d-4bd6174285f9
relation.isProjectOfPublication.latestForDiscovery97315a90-2dd0-46d9-8b7d-4bd6174285f9

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