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Pediatr Crit Care Me · Dec 2022
Bereaved Caregiver Perspectives on the End of Life in Pediatric Patients With Ventricular Assist Devices.
- Christine M Bui, Lauren M Schneider, Michelle R Brown, Danton S Char, Colleen K McIlvennan, and Seth A Hollander.
- Department of Pediatrics, Division of Cardiology, Stanford University, Palo Alto, CA.
- Pediatr Crit Care Me. 2022 Dec 1; 23 (12): e601e606e601-e606.
ObjectivesVentricular assist devices (VADs) are increasingly used in pediatric heart failure as bridges to heart transplantation, although 25% will die with VADs. Family experiences in this population are not well-described. The objective is to understand bereaved families' perspectives on VAD and end-of-life decision-making.DesignSemistructured interviews with bereaved caregivers of pediatric VAD patients.SettingTertiary children's hospital.PatientsFamilies of six pediatric VAD patients who died from 2014 to 2020.InterventionsNot available.Measurements And Main ResultsApplying a grounded theory framework, interviews were coded by two independent readers using qualitative software. Themes were discussed in iterative multidisciplinary meetings. Participants were interviewed at a median 2.4 years after their child died. Three major themes emerged: 1) "lack of regret" for VAD implantation despite the outcome; 2) "caregiver-child accord" (via patient's verbal assent or physical cues) at implantation and end-of-life was important in family decision-making; and 3) development of a "local surrogate family" (medical team and peer families) provided powerful support.ConclusionsBereaved families' perspectives provide insight into quality decision-making for major interventions and end-of-life care in pediatric patients with chronic illness who face decisions regarding technology dependence.Copyright © 2022 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.
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