Down Syndrome in Maternity Care: Mothers' Experiences of Prenatal Screening

Abstract

Prenatal screening for Down syndrome (DS) is offered to expectant parents receiving antenatal care in many countries, with an emphasis on providing parents with the opportunity to make informed choices about their pregnancy. We examined experiences of prenatal screening among mothers of children with DS living in England, Scotland, or Wales. Mothers (N = 317) of a child with DS born between 2019 and 2022 responded to an online survey and answered closed and open-ended questions about their experiences of being offered initial screening and non-invasive prenatal testing, and of receiving screening results. The findings from quantitative and qualitative analyses indicated that while most mothers understood screening was optional, many accepted initial screening with little consideration and most perceived it as routine. Many mothers reported receiving insufficient information about DS and limited support to help them make sense of screening results. Many mothers reported that screening results were not presented neutrally, and some highlighted how communication which reflected negative attitudes or assumptions about DS was highly memorable and impactful. The importance of personalized discussion to support mothers' understanding of screening, and to legitimize the option of declining screening tests, is discussed. The findings highlight the importance of a neutral approach to the delivery of both higher and lower chance screening results and of welcoming a diversity of choices.