Support Needs of Parents of Children With Congenital Anomalies Across Europe: A EUROlinkCAT Survey.
Elena Marcus, Anna Latos-Bielenska, Anna Jamry-Dziurla and 17 others
PMID 40908890WHAT IT FOUND
Across 10 European countries, parents of children with congenital anomalies reported unmet support needs, particularly for psychological help at diagnosis and guidance from general practitioners.
Satisfaction with healthcare varied widely by country, but support from partners, family and peers remained consistently high.
Key findings
01Only 27% of parents felt 'very supported' by healthcare professionals at diagnosis, and 49% wanted but did not receive professional psychological support.
02Satisfaction with general practitioners was low (34% 'very satisfied'), significantly lower than satisfaction with specialist doctors (51%), with notable variation across countries.
03Parents of children with Down syndrome reported significantly poorer support from healthcare professionals compared to those with congenital heart defects.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for SLPs
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What it does not show
The study used non-probabilistic convenience sampling via patient organisations, which may bias results towards parents already engaged with support networks. Recruitment periods and methods varied by country, potentially affecting comparability. The survey did not distinguish whether a child's diagnosis was delivered in a planned or unplanned consultation, a factor known to influence parental satisfaction. Data on support were self-reported and retrospective, relying on parental memory rather than objective records of service provision.
Declared interests
The authors declared no conflicts of interest. The study was funded by the European Union.
The easy way to misread this
Do not interpret the low satisfaction scores as evidence that healthcare professionals are providing poor care. The survey measured parental perception of support, which is influenced by individual expectations, cultural context, and the specific healthcare system in each country, rather than objective clinical quality.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →