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.
Highlights
Antenatal screening for fetal structural anomalies has become part of routine pregnancy care in most Western countries since its introduction in the 1970s
Our interviews with parents revealed examples of the different types of uncertainty described in the taxonomy regarding where uncertainty arises from and in relation to what the uncertainty was about (Table 3)
Regarding the ‘sources’ of uncertainty we found, for example, that the uncertainty related to ambiguity included the limited information available to parents about the anomaly identified
Summary
Antenatal screening for fetal structural anomalies has become part of routine pregnancy care in most Western countries since its introduction in the 1970s. When an anomaly is detected on an ultrasound, parents may be offered invasive diagnostic testing, to allow target genetic tests, chromosomal microarray analysis (CMA) (Wapner et al, 2012), or, increasingly, exome sequencing (ES) (Mone, Quinlan-Jones, & Kilby, 2018). While these diagnostic tests may lead to a clinical diagnosis, some parents will receive inconclusive results, variants of uncertain significance (VUS), or no diagnostic information
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