ExPreS - Experiences of Pregnancy Version 1

• Research type

  Research Study

• Full title

  A study of the experiences of women and their partners during pregnancies affected by suspected severe fetal anomalies

• IRAS ID

  128008

• Contact name

  Robyn Lotto

• Contact email

  rrl6@le.ac.uk

• Sponsor organisation

  University of Leicester

• Research summary

  BACKGROUND
  Around 2-3% of pregnancies are affected by a congenital anomaly. These anomalies, in turn, account for around 30% of neonatal and infant mortality in the UK. Whilst rates of detection are similar for all socio-economic groups, rates of termination for congenital anomalies are lower in more deprived socio-economic areas. This is the opposite to the observed relationship between deprivation and termination recorded for pregnancies terminated for reasons other than for a fetal anomaly. This variation explains a quarter of the widening socioeconomic gap in neonatal mortality.
  AIMS
  This study aims to explore the decision-making processes of prospective parents faced with a decision to continue or terminate a pregnancy associated with a severe congenital anomaly. Special consideration will be given to the influence of socio-economic deprivation on this process.
  METHODS
  This will be a qualitative study, relying mainly on data gathered from recording of consultations and interviews with parents and clinicians and will be informed by a systematic examination of the available literature. Women will be recruited from two centres in the East Midlands. Purposive sampling will be used in order to ensure a heterogeneous sample including women from a range of socioeconomic and ethnic groups, gestational age at diagnosis, and diagnoses (or suspected anomalies) with poor prognostic outcomes.
  EXPECTED CONTRIBUTION TO KNOWLEDGE
  Exploration of the factors leading to a decision to terminate or continue a pregnancy will result in a more detailed and nuanced understanding of parental decision-making. Particular attention will be paid to better understanding the socioeconomic variation in decisions about termination. This evidence base will help to ensure that future health policy and practice in this area best supports individual parents and does not inadvertently lead to an increase in socioeconomic inequalities in neonatal mortality

• REC name

  East Midlands - Nottingham 1 Research Ethics Committee

• REC reference

  13/EM/0293

• Date of REC Opinion

  24 Sep 2013

• REC opinion

  Favourable Opinion