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Parental views of antenatal testing and termination following a diagnosis of cleft lip

Stock, Nicola Marie; Costa, Bruna; Williams, Jenny; Martindale, Anna

Authors

Jenny Williams

Anna Martindale



Abstract

Fetal anomaly screening at 18-21 weeks now routinely includes cleft lip. If detected, the manner in which the diagnosis is communicated can considerably influence prospective parents’ decision-making in regard to further testing and termination of pregnancy (TOP). Given the known psychological impact of an antenatal diagnosis of cleft lip on prospective parents, this study aimed to explore the decision-making process from the parents’ perspective, in order to evaluate how well current practice is meeting guidelines. Data from 217 parents of children born with cleft lip (with or without cleft palate) were collected using a mixed-methods online survey. Quantitative responses were analysed using descriptive statistics, while qualitative data were analysed using inductive content analysis. The majority of respondents reported feeling upset, offended and/or anxious following the diagnosis, due to unsatisfactory information, insensitive comments, and a perceived lack of empathy from health professionals. Some respondents had felt under pressure to make a decision quickly, with a minority having regretted undergoing amniocentesis, and/or experiencing significant distress at having come close to TOP unnecessarily. The findings provide important insight into the ways in which the option to undergo further testing and/or TOP are perceived by prospective parents in the understudied case of cleft lip. A number of suggestions are made as to how the discussion between parents and health professionals could be improved, to ensure that the information and support needs of families affected by cleft lip are fully addressed.

Journal Article Type Article
Publication Date Jan 1, 2019
Journal Psychology Health & Medicine
Print ISSN 1354-8506
Publisher Taylor & Francis (Routledge)
Peer Reviewed Peer Reviewed
Volume 24
Issue 4
Pages 456-469
APA6 Citation Stock, N. M., Costa, B., Williams, J., & Martindale, A. (2019). Parental views of antenatal testing and termination following a diagnosis of cleft lip. Psychology, Health and Medicine, 24(4), 456-469. https://doi.org/10.1080/13548506.2018.1529328
DOI https://doi.org/10.1080/13548506.2018.1529328
Keywords diagnosis, cleft lip, amniocentesis, termination, parent perspective, ultrasound, sonography, pregnancy, visible difference
Publisher URL https://doi.org/10.1080/13548506.2018.1529328
Additional Information Additional Information : This is an Accepted Manuscript of an article published by Taylor & Francis in Psychology Health & Medicine on 3rd October 2018, available online: https://doi.org/10.1080/13548506.2018.1529328.
Corporate Creators : VTCT Foundation Research Team at the Centre for Appearance Research.