Putting control into parents' hands: Parent experiences with a genomic results e-booklet

Area of Science:

• Genetics
• Pediatric Neurology
• Health Communication

Background:

• Genomic testing in children provides valuable insights but requires clear communication.
• Families often need accessible resources to understand complex genomic results and their implications.
• Existing communication methods may not adequately address diverse linguistic and informational needs.

Purpose of the Study:

• To evaluate the clinical utility of a customizable, multi-language Genomic Results Booklet (GRB).
• To assess parent satisfaction and usage of the GRB for information and guidance post-genomic testing.
• To understand parent preferences for genomic result communication tools.

Main Methods:

• A customizable, printable e-booklet (GRB) was co-designed with parents.
• Parents of children undergoing genomic testing received the GRB.
• Surveys and semi-structured interviews were used to assess GRB usage and parent experiences.

Main Results:

• All surveyed families recommended the GRB and utilized its resources.
• Approximately 80% of parents shared the GRB with others.
• 67% of parents found the GRB helpful for future planning.
• Parents highly valued understandable information, practical guidance, and resource lists.

Conclusions:

• The GRB is a valued tool for explaining individual genomic testing results to families.
• The booklet effectively provides useful supports, specific resources, and a sense of direction.
• Customizable, multi-language resources are crucial for effective post-genomic testing communication.