Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective

• Main Authors: Isabella K. Pallotto (Author), Renée A. Shellhaas (Author), Kayli Maney (Author), Madelyn Milazzo (Author), Zachary Grinspan (Author), Jeffrey Buchhalter (Author), Elizabeth J. Donner (Author), Gardiner Lapham (Author), Thomas Stanton (Author), J. Kelly Davis (Author), Monica E. Lemmon (Author)
• Format: Book
• Published: Wiley, 2023-03-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Abstract Objective We aimed to characterize (1) the caregiver experience of learning about sudden unexpected death in epilepsy (SUDEP), and (2) caregiver preferences for SUDEP risk disclosure. Methods We distributed a 24‐question survey to caregivers of children with epilepsy. Free text questions we...