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

Simina Bogatan,Andrea Shugar,Syed Wasim,Susan Ball, Cathryn Schmidt,David Chitayat,Cheryl Shuman, Cheryl Cytrynbaum

PEC Innovation（2023）

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摘要

•Parents have identified a need for resources to help them discuss genetic diagnoses with their children•An online tool was developed to help with discussion and disclosure of 22q11 deletion syndrome•Parents felt more comfortable and capable of having these discussions after using the online tool

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关键词

22q11.2 deletion syndrome,Parent-child communication,Facilitating conversation,Disclosure of genetic diagnosis,Storytelling communication facilitation tool

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