Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly – A qualitative study of what is important to parents

Robyn Lotto,Natalie Armstrong,Lucy K Smith

doi:10.1016/j.midw.2016.10.003

Robyn Lotto, Natalie Armstrong + Show 1 more

Open Access

https://doi.org/10.1016/j.midw.2016.10.003

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Abstract

Objectiveto understand the experiences of women and their partners following the decision to terminate a pregnancy affected by a severe congenital anomaly Designqualitative semi-structured interviews with a purposive sample of women and their partners who underwent a termination of pregnancy following diagnosis of a severe congenital anomaly. Settingwomen referred to four fetal medicine centres across two hospital trusts. Analysisdata analysis was based on the constant comparative approach. Findingsthe over-arching theme emerging from the data was that of ‘falling through the gap’, where the care received did not adequately meet the needs of women and their partners. This was particularly salient at three specific points in the care pathway: enacting the decision to have a termination of pregnancy and subsequent initiation of the process; care during labour and birth, where parents describe being caught in ‘no-man's land’ between the antenatal and postnatal settings; and post-birth, where parents made sense of and came to terms with their decision. Conclusionsthe diagnosis of a severe congenital anomaly and the subsequent pathway that parents face is a traumatic event. Responsibility for the decision to terminate the pregnancy intensifies emotions and adds to the complexity of caring for this group. These findings point to the need for a specific care pathway for parents undergoing this difficult experience. Recommendations include the need for a greater understanding of the views of midwives caring for these parents, review of specific training needs, and examination of processes to better support both parents.

Highlights

Pregnant women in England presenting before 20 weeks’ gestation are offered antenatal screening tests for congenital anomalies through the NHS Fetal Anomaly Screening Program (FASP) (UK National Screening Committee 2009)
The aim of the screening programme is to enable parents and clinicians to make appropriate plans for the pregnancy and any care required after birth or to consider the option of termination, if a severe anomaly is identified (Lyus et al 2014) Eleven congenital anomalies are screened for: serious cardiac anomalies, anencephaly, open spina bifida, exomphalos, bilateral renal agenesis, lethal skeletal dysplasia, congenital diaphragmatic hernia, trisomies 13 and 18, cleft lip and gastroschisis (NHS Fetal Anomaly Screening Programme 2010)
This paper draws on data from a larger study exploring parental decision-making following diagnosis of a severe congenital anomaly, with the aim here to provide an understanding of the experiences of parents who have made the decision to terminate the pregnancy

Summary

Introduction

Pregnant women in England presenting before 20 weeks’ gestation are offered antenatal screening tests for congenital anomalies through the NHS Fetal Anomaly Screening Program (FASP) (UK National Screening Committee 2009). Following diagnosis of a FASP9 anomaly, around 70% of pregnancies end in termination (Budd et al 2015). This equates to around 2,700 such terminations in England and Wales annually (BPAS 2010). The offer of screening for congenital anomalies is universal, and given the majority of pregnancies affected by FASP9 anomalies are terminated, care of this group of women and their partners is an important aspect of the midwife’s role

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