Parental perspectives on delirium in paediatric cardiac patients: a North American survey
Brittany Shutes, Kayla Ann Harvey, Chance Alvarado, Kate Kanwar, Sandra L. StaveskiAbstract
Background:
Delirium is an inherently prevalent and particularly challenging aspect of pediatric heart disease that benefits from engagement of a vulnerable parent population. However, parental experience of witnessing their child’s episode(s) of delirium is seldom reported on in the cardiac population. Our aim was to identify and describe the specific impact of bearing witness to delirium symptoms as a parent or caregiver.
Methods:
A cross-sectional online survey was distributed via parent social media groups and e-mail lists, displayed at conferences, and posted in clinical spaces from August 2023 through March 2024.
Results:
Fifty-one parents/caregivers provided meaningful responses. Most parents/caregivers were white (47, 92%), married (43/50, 86%), female (43, 84%), had a bachelor’s degree or greater (39, 77%), and nearly half (24, 47%) had a household income greater than $150,000. Half (26, 51%) of the children with delirum symptoms were less than 3 years old at first episode. Most (40, 78%) parents/caregivers described witnessing their child’s delirium symptoms as “very” or “extremely distressing” and 17 (33%) were “very” or “extremely fearful” of further episodes. Only 39% (19/51) of parents/caregivers received support despite 90% indicating they would have wanted more support. Of the 13 parents/caregivers who indicated their experience with delirium still impacts their daily life, seven screened positive by Impact of Event Scale 6 criteria for probable post-traumatic stress disorder.
Conclusion:
This survey provides new evidence on the distressing nature of witnessing a child’s delirium episodes(s). Recognition of the impact on parents/caregivers and efforts to improve support and parental education should be undertaken.