Parental experiences of uncertainty following an abnormal fetal anomaly scan: Insights using Han’s taxonomy of uncertainty

Abstract

For a number of prospective parents, uncertainty during pregnancy starts when an anomaly is found during a routine fetal anomaly scan. This may be followed by numerous tests to determine the etiology and nature of the anomaly. In this study, we aimed to understand how prospective parents perceive and manage uncertainty after being confronted with a structural anomaly during their routine ultrasound. Han's taxonomy of uncertainty was used as a framework to identify and understand the different types of uncertainty experienced. Interviews were held in the UK (n = 8 women and n = 1 male partner) and in the Netherlands (n = 7 women) with participants who had experienced uncertainty in their pregnancy after a fetal scan. Data were analyzed using thematic analysis, and the uncertainties experienced by parents were mapped against the dimensions of the Han taxonomy (sources, issues, and locus). Participants' experience of uncertainty was relevant to all dimensions and subcategories of the Han taxonomy, showing its applicability in the prenatal setting. Sources of uncertainty included receiving probabilistic or ambiguous information about the anomaly, or information that was complex and challenging to understand. Issues of uncertainty included were those that were scientific—such as a probable diagnosis with no further information, personal—such as the emotional impact of uncertainty, and practical—such as limited information about medical procedures and practical aspects of care. Additionally, participants described what helped them to manage uncertainty. This included active coping strategies such as searching for information on the Internet, external coping resources such as seeking social support, and internal coping resources such as using positivity and hope. Several recommendations for the healthcare professional to minimize uncertainty and help the patient deal with uncertainty have been proposed based on these findings.

How are uncertain prenatal genetic results perceived and managed two years after they were received? A qualitative interview study

“…It was a surprising key finding that the diagnostic process following identification of the CNV was still quite vivid in the women's memories. The uncertainty of the diagnostic process, the prolonged waiting, and the continuous monitoring were perceived by most to have been exceedingly difficult and exhausting, consistent with other studies (Bratt et al., 2015; Hammond et al., 2021; Lou et al., 2016). One woman suggested that the diagnostic process was possibly worse than the CNV result itself.…”

First and second trimester ultrasound in pregnancy: A systematic review and metasynthesis of the views and experiences of pregnant women, partners, and health workers

“…Uncertain findings that could, but may not, indicate abnormality, were particularly difficult for many couples, resulting in feelings of having lost their pregnancy, and a shift to a new tentative, risky state [ 18 , 20 , 29 , 91 ]. Some women reported detaching themselves from their pregnancy and/or baby while also experiencing constant worry in relation to their baby’s wellbeing [ 17 , 18 , 22 ].…”

“…Some women reported detaching themselves from their pregnancy and/or baby while also experiencing constant worry in relation to their baby’s wellbeing [ 17 , 18 , 22 ]. This state persisted into the long term for some, even after a follow-up diagnosis that all was well [ 18 , 20 , 91 ]. In some cases, this concern persisted even into infanthood, with, at the extreme, the decision not to pursue previously planned future pregnancies [ 18 , 20 , 91 ].…”

“…This state persisted into the long term for some, even after a follow-up diagnosis that all was well [ 18 , 20 , 91 ]. In some cases, this concern persisted even into infanthood, with, at the extreme, the decision not to pursue previously planned future pregnancies [ 18 , 20 , 91 ]. Some health professionals were acutely aware of the impact of uncertain findings on parents, resulting in dilemmas around whether these should be disclosed [ 36 , 74 , 81 ].…”

How to deal with uncertainty in prenatal genomics: A systematic review of guidelines and policies

“… 3 , 4 , 23 , 25 , 30 , 32 Offering psychosocial care during counselling was rarely recommended, while the prenatal setting causes significant psychological distress as parents are challenged to make (irrevocable) decisions about their pregnancy. 38 …”