Background: Down syndrome (DS) is the most common chromosomal abnormality in newborns. Initial diagnosis is made by healthcare professionals right after birth and usually comes as a surprise to the parents.
Aims: This questionnaires and interviews based study aims to describe and research the experience of parents who were told that their baby has DS, and thereby learn and improve the way the medical teams deliver the news.
Methods: Questionnaires were distributed to parents of children with DS of all ages (born in 1974-2016) from all over Israel. In-depth one-on-one interviews and focus groups discussions were conducted with parents.
Results: 84/101 returned questionnaires were used for analysis. 77% of the responders were women and 56% ultra-orthodox-Jews. Parents conveyed an overall dissatisfaction with the experience. Mothers who received the news alone were significantly less satisfied with their doctors than those who had familial support. No other variable had a significant effect on satisfaction. 18 parents participated in interviews. Themes included experiences of loneliness and confusion after birth "The feeling you get from the staff is that they would prefer to be hit by a truck than do their job...". Parents were divided about how much information should be given when delivering the news, but thought that a sense of optimism should be conveyed.
Conclusion: Our skills in delivering bad news to parents of children with DS have seemingly remained static over decades. The diverse nature of the Israeli population may explain why there is not a single correct way.
