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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

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...

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Detalles Bibliográficos
Autores principales: Bogatan, Simina, Shugar, Andrea, Wasim, Syed, Ball, Susan, Schmidt, Cathryn, Chitayat, David, Shuman, Cheryl, Cytrynbaum, Cheryl
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10194326/
https://www.ncbi.nlm.nih.gov/pubmed/37214507
http://dx.doi.org/10.1016/j.pecinn.2022.100115