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

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaperJournal articleResearchpeer-review

DOI

  • Jennifer Hammond, UCL Great Ormond Street Institute of Child Health
  • ,
  • Jasmijn E. Klapwijk, Erasmus University Rotterdam
  • ,
  • Melissa Hill, UCL Great Ormond Street Institute of Child Health
  • ,
  • Stina Lou
  • Kelly E. Ormond, Stanford University
  • ,
  • Karin E.M. Diderich, Erasmus University Rotterdam
  • ,
  • Sam Riedijk, Erasmus University Rotterdam
  • ,
  • Celine Lewis, UCL Great Ormond Street Institute of Child Health

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.

Original languageEnglish
JournalJournal of Genetic Counseling
Volume30
Issue1
Pages (from-to)198-210
Number of pages13
ISSN1059-7700
DOIs
Publication statusPublished - Feb 2021

    Research areas

  • communication, fetal anomaly, parents, prenatal diagnosis, uncertainty

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