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Information is power: The experiences, attitudes and needs of individuals who chose to have prenatal genomic sequencing for fetal anomalies.

Catherine G KernieJulia WynnAllison RosenbaumJessica de VoestStephanie GallowayJessica L GiordanoSamantha StoverLauren WesterfieldKelly GilmoreRonald J WapnerIgnatia B Van den VeyverNeeta L VoraRebecca G CliftonAaron B CaugheyWendy K Chung
Published in: Prenatal diagnosis (2022)
Participants' experiences with pGS were often intertwined with the experience of having a fetus with an abnormality. Participants were satisfied with the decision to participate in research and the support they received from the healthcare team, although waiting for results was associated with anxiety. The healthcare team plays an integral role in setting expectations and validating feelings of anxiety, fear and uncertainty.
Keyphrases
  • healthcare
  • mental health
  • palliative care
  • sleep quality
  • health information
  • quality improvement
  • pregnant women
  • decision making
  • physical activity
  • social media
  • prefrontal cortex