Parents' Experiences of Diagnosis and Screening for Down Syndrome in The Netherlands

This study investigates parental experiences with screening and diagnostic testing for Down syndrome (DS) in the Netherlands from 2005 to 2024. Utilizing online surveys from the Dutch Down Syndrome Foundation, the research analyzes changes in diagnostic communication, parental satisfaction, and screening considerations over time. Findings indicate a rising uptake of prenatal screening among survey respondents. Yet, they reported lower overall satisfaction with their prenatal diagnostic experience in later surveys. Notably, 39% (16/41) of parents with a prenatal suggestive diagnosis in 2024 felt pressured to terminate the pregnancy. Values-based reasons for opting out of screening, such as welcoming a child with DS, have significantly increased over time. The study highlights disparities in information adequacy and communication quality across different healthcare professionals. Findings suggest a need for improved counseling and support for parents undergoing DS screening and diagnosis, particularly in prenatal contexts.