Parental views of antenatal testing and termination following a diagnosis of cleft lip

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Nicola Marie Stock1, Bruna Costa1, Jenny Williams2

  • 1a Centre for Appearance Research , University of the West of England , Bristol , UK.

Psychology, Health & Medicine
|October 4, 2018
PubMed

Insights

Antenatal diagnosis of cleft lip significantly impacts parents, often causing distress due to poor communication from healthcare providers. Improving empathy and information sharing is crucial for parental decision-making support.

Area of Science:

  • Medical Genetics
  • Prenatal Diagnosis
  • Psychology

Background:

  • Fetal anomaly screening at 18-21 weeks routinely includes cleft lip detection.
  • Antenatal diagnosis of cleft lip can significantly impact parental psychological well-being and decision-making regarding further testing and termination of pregnancy (TOP).

Purpose of the Study:

  • To explore the decision-making process from parents' perspectives following an antenatal cleft lip diagnosis.
  • To evaluate current healthcare practices against established guidelines for communicating fetal anomaly diagnoses.

Main Methods:

  • A mixed-methods online survey was administered to 217 parents of children born with cleft lip (with or without cleft palate).

Main Results:

  • Parents reported negative emotional responses (upset, anxiety) due to inadequate information and perceived lack of empathy from health professionals.
  • Some parents felt pressured to make rapid decisions, with a minority regretting amniocentesis or experiencing distress over near-termination of pregnancy (TOP).

Conclusions:

  • Current communication practices surrounding antenatal cleft lip diagnosis require improvement to better meet parents' information and support needs.
  • Enhancing empathy and information delivery by health professionals is essential for supporting parental decision-making and reducing psychological distress.

Keywords:
Diagnosisamniocentesiscleft lipparent perspectivepregnancysonographyterminationultrasound

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