Mothers of Children With Down Syndrome Report Need for Improved Screening Communications
THURSDAY, Aug. 21, 2025 -- A survey of mothers of children with Down syndrome (DS) reveals room for improvement to better support parental understanding of prenatal screening and to promote intentional, informed decision-making, according to research published online Aug. 9 in the American Journal of Medical Genetics, Part A.
Tamar Rutter, from the University of Warwick in the United Kingdom, and colleagues assessed experiences of prenatal screening among 317 mothers of children with DS (born between 2019 and 2022) living in England, Scotland, or Wales.
The researchers found that while most mothers understood screening was optional, many accepted initial screening with little consideration (54 percent) and most perceived it as routine (83 percent). More than one-third (37 percent) reported insufficient opportunity to discuss screening with health care professionals before making their decision. Many mothers reported insufficient information about DS (62 percent) and limited support to understand screening results. Many mothers reported that screening results were not presented neutrally, with some noting how negative attitudes or assumptions about DS were highly memorable and impactful.
"Prenatal screening is often how parents first learn about the possibility of their child having Down syndrome, and our research shows the lasting personal impact of the way screening results are communicated to them," Rutter said in a statement. "At the same time, we found that many expectant parents received limited support to meaningfully consider whether or not to have screening, highlighting the need for care which truly promotes informed choice."
Disclaimer: Statistical data in medical articles provide general trends and do not pertain to individuals. Individual factors can vary greatly. Always seek personalized medical advice for individual healthcare decisions.
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