Abstract
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, while some parents suggest risk is unnecessarily overemphasized. To quantify how risk is perceived by parents. One hundred six parents of children undergoing cardiac surgery were recruited and completed a Likert-type scale from 1 (perceived low risk) to 6 (perceived high risk), at 5 points: arrival at preadmission, post discussion with anethetist/surgeon, day of surgery, discharge from intensive care, and at outpatient follow-up. The surgical sample was stratified according to Risk Adjustment in Congenital Heart Surgery level. Data were analyzed using Wilcoxon rank tests for differences in distributions of scores and Krippendorff α to examine the level of agreement. 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 < .001). Postoperative complications resulted in a persistent rise in risk perception at follow-up (P < .001). Analysis of parental risk scores and objective measures of surgical risk highlighted poor agreement that was particularly marked at the extremes of risk. Parents perceived higher risk scores than those reported by the clinical team. Mothers reported statistically significantly 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.
Highlights
Interpretation of risk by parents of children undergoing congenital cardiac surgery is poorly documented
One hundred and six parents of children undergoing elective cardiac surgery were recruited via preadmission clinic in the weeks prior to elective surgery
When a risk score was missing for one time point, the median of the other scores was used (n= 5 time points)
Summary
Interpretation of risk by parents of children undergoing congenital cardiac surgery is poorly documented. Each judgement requires the balancing of risk and uncertainty, in order for an informed choice to be made The complexity of this task is often underestimated 2, with recent research highlighting the difficulties for both clinicians and parents when discussing risk 3. Findings from a study exploring parental views of the consent process in paediatric surgery, suggested that some parents felt that responsibility for the decision to operate or not should remain with the surgeon, not the parents 5 Whilst this debate surrounding the manifestations of non-directive counselling and informed choice in care provision creates a theoretical framework in which the findings should be considered 6-9, this paper is primarily focussed on parental perceptions of risk. The aim of the paper is to explore the way in which parents of children with congenital cardiac anomalies navigate risk and uncertainty during the pre, peri and post-operative periods
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