Parents’ decision-making following diagnosis of a severe congenital anomaly in pregnancy:Practical, theoretical and ethical tensions


Patient involvement, in the form of shared decision-making, is advocated within healthcare. This is informed by the principlist account of patient autonomy that prioritises informed understanding, and decision-making free from coercion. This arguably over-simplifies the role of the social, whilst overlooking the role of culture and context in medical decision-making. Clinicians encourage patients to demonstrably make decisions in the principlist ‘style’ that fit with their understandings of ethically ‘correct’ ways to support patient decision-making. However, this expected ‘style’ is often not achieved in practice. In this article, we use empirical data from a qualitative study exploring parental decision-making following diagnosis or suspicion of a severe congenital anomaly in pregnancy. Our study was based in four fetal medicine clinics in England, comprising semi-structured interviews with 38 parents whose pregnancy was affected by a severe congenital anomaly, 18 interviews with fetal medicine clinicians, and audio-recordings of 48 consultations. Examination of the dynamics at play within different approaches to decision-making highlights how the idealised concepts proposed in theory fail to capture real-life experiences of medical decision-making. The influence of the patient-clinician relationship on decisions is brought to the fore, highlighting the influence of power dynamics in implicitly and explicitly influencing patient decisions, and the need to better address this in policy and practice.

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Divisions: College of Business and Social Sciences > School of Social Sciences & Humanities
College of Business and Social Sciences > School of Social Sciences & Humanities > Sociology and Policy
College of Business and Social Sciences > School of Social Sciences & Humanities > Centre for Critical Inquiry into Society and Culture (CCISC)
Funding Information: The authors wish to acknowledge the Department of Health Sciences at the University of Leicester , who funded the PhD that produced the data used in this publication. Natalie Armstrong is supported by a Health Foundation Improvement Science Fellowship and
Additional Information: © 2020, Elsevier. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International
Uncontrolled Keywords: Bioethics,Congenital anomaly,Decision-making,Empirical ethics,Patient autonomy,Qualitative,Sociological bioethics,Health(social science),History and Philosophy of Science
Publication ISSN: 1873-5347
Last Modified: 23 Jul 2024 07:12
Date Deposited: 30 Sep 2020 13:44
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Related URLs: http://www.scop ... tnerID=8YFLogxK (Scopus URL)
https://www.sci ... 5815?via%3Dihub (Publisher URL)
PURE Output Type: Article
Published Date: 2020-12-01
Published Online Date: 2020-09-13
Accepted Date: 2020-09-10
Authors: Paton, Alexis (ORCID Profile 0000-0003-4310-6983)
Armstrong, Natalie
Smith, Lucy
Lotto, Robyn

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