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Title: Congenital cardiac surgery and parental perception of risk; a quantitative analysis
Authors: Lotto, R
Jones, I
Seaton, S
Dhannapuneni, R
Guerrero, R
Lotto, A
First Published: 2019
Publisher: SAGE Publications (UK and US) for World Society for Pediatric and Congenital Heart Surgery
Citation: World Journal for Pediatric and Congenital Heart Surgery, 2019, In Press
Abstract: Introduction: Interpretation of risk by parents of children undergoing congenital cardiac surgery is poorly documented. The available evidence highlights a dichotomy, where clinicians suggest parents may not grasp the complexity and risk associated with procedures, whilst some parents suggest risk is unnecessarily over-emphasised. Aim: To quantify how risk is perceived by parents Methods: 106 parents of children undergoing cardiac surgery were recruited and completed a Likert scale from 1 (perceived low-risk) to 6 (perceived high-risk), at five points: arrival at pre-admission; post discussion with anaethetist/surgeon; day of surgery; discharge from intensive care; at outpatient follow up. The surgical sample was stratified according to risk adjustment in congenital heart surgery. Analysis: Data was analysed using Wilcoxon rank tests for differences in distributions of scores, and Krippendorff's Alpha to examine level of agreement. Results: Median parental risk scores varied over time, with no consistent risk scores observed. Maternal scores were consistently higher than paternal scores at every time point (p<0.001). Postoperative complications resulted in a persistent rise in risk perception at follow up (p<0.001). Analysis of parental risk scores, and objective measures of surgical risk highlighted poor agreement that was particularly marked at the extremes of risk. Conclusions: Parents perceived higher risk scores than those reported by the clinical team. Mothers reported statistically significant higher scores than their partners, highlighting potential tensions. In addition, the changing perception of risk over time emphasizes the need for flexible levels of support and information as parents navigate uncertainty.
eISSN: 2150-136X
Links: TBA
Embargo on file until: 1-Jan-10000
Version: Post-print
Status: Peer-reviewed
Type: Journal Article
Rights: Copyright © 2019, SAGE Publications (UK and US) for World Society for Pediatric and Congenital Heart Surgery. Deposited with reference to the publisher’s open access archiving policy. (
Description: The datasets analysed during the current study are available from the corresponding author on reasonable request.
The file associated with this record is under embargo until publication, in accordance with the publisher's self-archiving policy. The full text may be available through the publisher links provided above.
Appears in Collections:Published Articles, Dept. of Health Sciences

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