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

• Główni autorzy: Simina Bogatan (Autor), Andrea Shugar (Autor), Syed Wasim (Autor), Susan Ball (Autor), Cathryn Schmidt (Autor), David Chitayat (Autor), Cheryl Shuman (Autor), Cheryl Cytrynbaum (Autor)
• Format: Książka
• Wydane: Elsevier, 2023-12-01T00:00:00Z.
• Hasła przedmiotowe: article
• Dostęp online: 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...