Development of a storytelling communication facilitation tool (SCFT) to facilitate discussion of complex genetic diagnoses between parents and their children: A pilot study using 22q11.2 deletion syndrome as a model condition

• Main Authors: Simina Bogatan (Author), Andrea Shugar (Author), Syed Wasim (Author), Susan Ball (Author), Cathryn Schmidt (Author), David Chitayat (Author), Cheryl Shuman (Author), Cheryl Cytrynbaum (Author)
• Format: Book
• Published: Elsevier, 2023-12-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Objective: To develop and evaluate a storytelling communication facilitation tool designed to help parents overcome barriers to discussing a complex multisystem genetic diagnosis with their affected children, using 22q11.2 deletion syndrome (22q11DS) as an exemplar condition. Methods: A story tellin...