Understanding the experience of receiving a diagnosis of Down syndrome

One of the most important jobs of a clinician is sharing unexpected news with patients and families. Every year, over 7000 families in the US learn that their child has Down syndrome (Ds) (1,2). For many families, this moment becomes a flashbulb memory, a vivid, emotionally intense memory that is remembered in great detail for years, even decades, after the diagnosis (3). A common anecdote among families of children with Ds is that while they would not change their child's diagnosis, they would change the way their diagnosis was delivered (4,5). We surveyed parents of children diagnosed with Ds to better understand their diagnosis experience and what areas could be improved. With Institutional Review Board approval from Bethel University, we distributed a survey to 2811 families of children who received the diagnosis of Ds within the past year. Participants were identified using a database of households who connected in the past year with Jack's Basket, a non-profit aimed at supporting families of children born with Ds and empowering clinicians to better share this diagnosis. Responses were collected virtually on a rolling basis from 2019 to 2022. The 23-question, anonymous, voluntary program survey included eight multiple-choice questions about the diagnosis experience, with one question asking respondents to rate their diagnosis experience on a scale of 1 (negative) to 5 (positive). This report is an analysis of those eight questions using descriptive statistics and parametric analysis.