The DECISIONS Study

• Research type

  Research Study

• Full title

  Describing Experiences of Counselling, Information, and Support for In-Utero Anomalies On Neuroimaging - a mixed methods approach.

• IRAS ID

  343541

• Sponsor organisation

  King's College Hospital NHS Foundation Trust

• Duration of Study in the UK

  3 years, 0 months, 1 days

• Research summary

  Screening is a routine part of pregnancy and includes an ultrasound scan at 20 weeks gestation (called the “anomaly scan”). This can detect abnormalities to the fetal brain, as well as to other parts of the fetal body. When any form of abnormality is diagnosed, pregnant women / people feel shock and trauma. This is potentially greater for fetal brain abnormalities, where developmental difficulties / disabilities can result. There is little data on pregnant women / people’s reactions to fetal brain abnormalities because most of the data comes from other conditions, like genetic disorders. There is little information on how they perceive the counselling they received, such as how the condition and prognosis were explained. What data does exist, it takes a strictly heteronormative approach in mainly caucasian Christian people. There is even less data on how their partners’ (or supporting family member or friends) feel during the counselling, and no data on how clinicians involved in fetal counselling feel about this counselling. We do not know what barriers they face in providing good information nor what resources they need to counsel families well.

  This study aims to describe the experiences of a number of people towards the counselling of families whose fetus has a brain abnormality. We will seek evidence on the experience from three groups:
  1. Pregnant women / people whose fetus has a brain abnormality, with a focus on including people from diverse backgrounds, such as ethnicity and from the LGBTQ+ community
  2. Supporting partners / family members / friends of a pregnant woman / person whose fetus has a brain abnormality
  3. Staff involved in a counselling (fetal medicine doctors, midwives, paediatric neurologists, neonatologists).

  Based on this data, we can determine what pathways, guidelines, educational sessions, and resources are needed to improve antenatal counselling for pregnant people / families in the future.

• REC name

  Yorkshire & The Humber - Bradford Leeds Research Ethics Committee

• REC reference

  24/YH/0275

• Date of REC Opinion

  19 Dec 2024

• REC opinion

  Favourable Opinion