To describe caregiver burden among those whose children survive in-hospital cardiac arrest and have high risk of neurologic disability, and explore factors associated with burden during the first year post-arrest.
The study is a secondary analysis of the Therapeutic Hypothermia after Paediatric Cardiac Arrest In-Hospital (THAPCA-IH) trial. 329 children who had an in-hospital cardiac arrest, chest compressions for >2 min, and mechanical ventilation after return of circulation were recruited to THAPCA-IH. Of these, 155 survived to one year, and caregivers of 138 were assessed for burden. Caregiver burden was assessed at baseline, and 3 and 12 months post-arrest using the Infant Toddler Quality of Life Questionnaire for children <5 years old and the Child Health Questionnaire for children >5 years. Child functioning was assessed using the Vineland Adaptive Behaviour Scales Second Edition (VABS-II), the Paediatric Overall Performance Category (POPC) and Paediatric Cerebral Performance Category (PCPC) scales, and caregiver perception of global functioning.
Of 138 children, 77 (55.8%) were male, 77 (55.8%) were white, and 109 (79.0%) were <5 years old at the time of arrest. Caregiver burden was greater than reference norms at all time points. Worse POPC, PCPC and VABS-II scores at 3 months post-arrest were associated with greater caregiver burden at 12 months. Worse global functioning at 3 months was associated with greater burden at 12 months for children <5 years.
Caregiver burden is substantial during the first year after paediatric in-hospital cardiac arrest, and associated with the extent of the child’s neurobehavioural dysfunction.
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Published online: March 27, 2018
Accepted: March 26, 2018
Received in revised form: March 14, 2018
Received: January 25, 2018
☆A Spanish translated version of the abstract of this article appears as Appendix in the final online version at https://doi.org/10.1016/j.resuscitation.2018.03.034.
© 2018 Elsevier B.V. All rights reserved.