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Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey

2022-11-12Journal article Open access
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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, LRenée
dc.contributor.authorMatias Dias, Carlos
dc.contributor.authorNeergaard Pedersen, Christina
dc.contributor.authorNeville, Amanda J.
dc.contributor.authorNiemann, Annika
dc.contributor.authorOdak, Ljubica
dc.contributor.authorPierini, Anna
dc.contributor.authorRico, Juan
dc.contributor.authorRissmann, Anke
dc.contributor.authorRankin, Judith
dc.contributor.authorMorris, Joan K.
dc.date.accessioned2023-03-16T15:21:32Z
dc.date.available2023-03-16T15:21:32Z
dc.date.issued2022-11-12
dc.description.abstractBackground: Parents of children who have a congenital anomaly can experience significant worry about their child's health. Access to clear, helpful, and trustworthy information can provide a valuable source of support. In this study the aim was to explore the information needs of parents/carers of children with congenital anomalies across Europe. Method: A cross-sectional online survey was developed in nine languages to measure parents' information needs, including: (1) the 'helpfulness'/'trustworthiness' of information received from eight relevant sources, and (2) overall satisfaction with information received. Parents/carers of children (0-10 years) with cleft lip, spina bifida, congenital heart defect [CHD] requiring surgery, and/or Down syndrome were recruited online via relevant organisations in 10 European countries from March-July 2021. Quantitative analyses using multivariable logistic regressions were performed. Results: One thousand seventy parents/carers of children with a cleft lip (n = 247), spina bifida (n = 118), CHD (n = 366), Down syndrome (n = 281), and Down syndrome with CHD (n = 58) were recruited in Poland (n = 476), the UK (n = 120), Germany (n = 97), the Netherlands/Belgium (n = 74), Croatia (n = 68), Italy (n = 59), other European countries (n = 92), and not specified/non-European countries (n = 84). Most participants were mothers (92%) and aged 31-40 years (71%). Participants were most likely to rate support groups (63%), patient organisations (60%), specialist doctors/nurses (58%), and social media (57%) as 'very helpful' information sources. 'Very trustworthy' ratings remained high for specialist doctors/nurses (61%), however, they declined for support groups (47%), patient organisations (48%), and social media (35%). Germany had the highest proportion of participants who were 'very satisfied' (44%, 95% CI = 34%-54%) with information, whereas this percentage was lowest in Croatia (11%, 95% CI = 3%-19%) and Poland (15%, 95% CI = 11%-18%). Parents of children with Down syndrome had significantly lower satisfaction ratings than parents of children with CHD; 13% (95% CI = 8%-18%) reported being 'very satisfied' compared to 28% (95% CI = 23%-33%) in the CHD group. Conclusions: Findings suggest that informal sources of information (e.g. support groups) are of value to parents, however, they are not deemed as trustworthy as specialist medical sources. Satisfaction ratings differed across countries and by anomaly, and were particularly low in Croatia and Poland, as well as for parents of children with Down syndrome, which warrants further investigation.pt_PT
dc.description.sponsorshipThis project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733001. Start date: 1 Jan 2017.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationBMC Pediatr. 2022 Nov 12;22(1):657. doi: 10.1186/s12887-022-03734-zpt_PT
dc.identifier.doi10.1186/s12887-022-03734-zpt_PT
dc.identifier.issn1471-2431
dc.identifier.urihttp://hdl.handle.net/10400.18/8553
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherBMCpt_PT
dc.relationEUROlinkCAT: Establishing a linked European Cohort of Children with Congenital Anomalies
dc.relation.publisherversionhttps://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-022-03734-zpt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectChildpt_PT
dc.subjectCongenital Anomalypt_PT
dc.subjectInformation Needspt_PT
dc.subjectQuestionnairept_PT
dc.subjectSupportpt_PT
dc.subjectSurveypt_PT
dc.subjectEstados de Saúde e de Doençapt_PT
dc.subjectRegistos Epidemiológicospt_PT
dc.titleInformation needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT surveypt_PT
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.issue1pt_PT
oaire.citation.startPage657pt_PT
oaire.citation.titleBMC Pediatricspt_PT
oaire.citation.volume22pt_PT
oaire.fundingStreamH2020
project.funder.identifierhttp://doi.org/10.13039/501100008530
project.funder.nameEuropean Commission
rcaap.embargofctAcesso de acordo com política editorial da revista.pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isProjectOfPublication97315a90-2dd0-46d9-8b7d-4bd6174285f9
relation.isProjectOfPublication.latestForDiscovery97315a90-2dd0-46d9-8b7d-4bd6174285f9

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