Marcus Elena, Latos-Bielenska Anna, Jamry-Dziurla Anna, Barišić Ingeborg, Cavero-Carbonell Clara, Den Hond Elly, Garne Ester, Genard Lucas, Santos Ana João, Lutke L Renée, Dias Carlos Matias, Páramo-Rodríguez Lucía, Pedersen Christina Neergaard, Neville Amanda J, Niemann Annika, Odak Ljubica, Pierini Anna, Rissmann Anke, Rankin Judith, Morris Joan K
Population Health Research Institute, St George's, University of London, London, UK.
Chair and Department of Medical Genetics, Poznan University of Medical Sciences, Collegium Maius, Poznań, Poland.
Child Care Health Dev. 2025 Sep;51(5):e70160. doi: 10.1111/cch.70160.
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.
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).
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.
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.
患有先天性异常的儿童的父母和照顾者在满足孩子的医疗需求时可能会感到压力。给予他们充分的支持很重要。本研究探讨了欧洲各地患有先天性异常的儿童的父母/照顾者的支持需求。
我们开展了一项横断面在线调查，以衡量父母在诊断时及随后几年获得支持的经历。我们通过10个欧洲国家的相关组织在网上招募了患有唇裂、需要手术的先天性心脏病、唐氏综合征和/或脊柱裂的0至10岁儿童的父母/照顾者（2021年3月至7月）。
共招募了1109名父母/照顾者，其中波兰476名，英国120名，德国97名，比利时/荷兰74名，克罗地亚68名，意大利59名，其他欧洲国家92名，未指明/非欧洲国家84名。在诊断时，只有27%（262/984）的父母/照顾者表示医护人员给予了充分支持，49%（468/959）的父母/照顾者表示他们希望获得专业心理支持但未得到。诊断后，各国对医护人员支持的满意度差异显著，而对参与者个人网络支持的满意度则更为一致。
我们的研究结果表明，父母在诊断时需要医护人员提供更多支持，尤其是心理支持。需要在欧洲背景下进行进一步研究，以了解支持的障碍可能是什么，以及如何更有效地将其纳入现有的医疗系统。
