ABSTRACT
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.