Pre and postnatal Down syndrome determinations: An investigation of past experiences and potential improvements
The experience of receiving a Down syndrome (DS) determination in Canada has not been thoroughly explored. The purpose of this research project was to shed light on the experiences of Canadians receiving pre- or post- natal DS determinations in order to analyze the extent to which they align with best practice recommendations. Thirty-two narrative interviews were conducted with 42 participants (10 couples and 22 individuals). Participants relayed their story of receiving their child’s or a prospective child’s DS determination. Interviews were analyzed thematically with a focus on the explicit content of the participants’ stories. Participants’ stories often spanned from the time they were considering having children up to present day. Many parents and prospective parents relayed dissatisfaction with their determination experience. Experiences with prenatal screening suggested a lack of informed consent and subsequent difficulty interpreting the probabilities presented to them as a result of screening. Participants’ stories illustrated that their care providers were often non-neutral, and applied implicit or explicit pressure about screening, testing, and termination decisions. When they received their determinations, participants tended to be dissatisfied with the duration of their consultations, dissatisfied with receiving the determination without their partner present, dissatisfied with the lack of up-to date information provided to them and dissatisfied with their care provider’s communication skills for delivering the news. Participants reported being avoided by care providers when their baby was born and noted a lack of celebration upon the birth of their child. Parents also relayed stories about care providers whom they described as “fantastic”, “great” and “lovely”. Parents were satisfied with determinations that involved a neutral reassuring tone throughout which the baby was present and at the center of the discussion. Participants appreciated a thorough explanation of the indicators under consideration and their fallibility. They were satisfied with quiet, private, consultations wherein all of their questions were addressed, the next steps were explained, and the care provider stayed until it felt like there was a conclusion to their conversation and their questions. Most participants initially experienced negative emotional reactions to their child’s determination. Many attributed their reaction to the lack of knowledge they had about DS and the lack of or superficial experience they had with people with DS. Several participants relayed that the most helpful information they received came from the provincial or national DS societies, but that this information often came late. A more formal relationship between support organizations and physicians who deliver the news could improve this flaw in the system. Since receiving their determinations, many participants looked back on their “journey” and framed it as simply “taking the scenic route”. However, to frame all experiences in this way would be an oversimplification. The way that families are impacted by having a member with DS is likely influenced by child, family, and societal factors, all of which interact. Some families relayed significant challenges, which they believed the dominant narrative excludes. There is not one story of DS, and therefore the task of educating prospective parents about what life with DS will be like is challenging. The best way forward may be to present parents with a range of possibilities and help families evaluate these possibilities in the context of their own lives.
Down syndrome determination, Down syndrome diagnosis
Doctor of Philosophy (Ph.D.)