Article Text

Download PDFPDF

Clinicians’ perspectives of parental decision-making following diagnosis of a severe congenital anomaly: a qualitative study
  1. Robyn Lotto1,
  2. Lucy K Smith2,
  3. Natalie Armstrong2
  1. 1 School of Nursing and Allied Health, Liverpool John Moores University, Liverpool, UK
  2. 2 Department of Health Sciences, University of Leicester, Leicester, UK
  1. Correspondence to Robyn Lotto;{at}


Objective To explore clinicians’ perspectives on supporting parents’ decision-making following diagnosis of a severe congenital anomaly, and how this is shaped by current policy.

Methods This paper reports data collated as part of a larger project examining parents’ decision-making following antenatal diagnosis. The focus of this paper is the data arising from semistructured interviews conducted with 18 clinicians, with findings further supported by data generated from consultations between clinicians and parents. All interviews and consultations were audio-recorded and transcribed verbatim, with analysis based on the constant comparative approach.

Results Three key themes emerged which together shape the practice of clinicians working in this area: first, the law governing termination of pregnancy (TOP) and how clinicians believe this influences the context in which decisions about whether to terminate or continue an affected pregnancy are made; second, approaches to the management of cases seen as particularly challenging; and third, how clinicians understand their role when working with parents. These themes combine to create a strong desire on the part of clinicians for parents to engage in a particular ‘rational’ form of decision-making and to be able to demonstrate the enactment of this. This is seen as important in order to ensure the ‘right’ decision has been reached and, particularly when the decision is to terminate, will withstand possible scrutiny.

Conclusions The policy context in which these decisions are made strongly shapes how clinicians practise and what they want to see from the parents with whom they work. The ways in which they seek to overcome the difficulties in interpreting the law may result in variations in the offer of late TOP, both between and within units. This may inadvertently affect the options available to women least able to engage in this idealised form of decision-making.

  • Decision-making
  • Congenital anomaly
  • Clinicians
  • Qualitative
  • Policy
  • Antenatal

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

View Full Text

Statistics from


  • Contributors RL, LKS and NA conceived and designed the study. RL was responsible for acquisition of data. All authors contributed to interpretation of data. RL wrote the first draft of the paper. All authors were involved in subsequent revision and approved the final manuscript. RL is the guarantor.

  • Funding This study was funded by a University of Leicester Health Sciences Department grant between TIMMS (The Infant Mortality and Morbidity Studies Group) and SAPPHIRE (Social Sciences Applied to Healthcare Improvement Research). LKS is funded by a National Institute for Health Research Career Development Fellowship. This article presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

  • Competing interests None declared.

  • Ethics approval Nottingham Research Ethics Committee (REC Reference 13/EM/0293).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available from the authors.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.