Development of a Tool to Guide Parents Carrying a BRCA1/2 Mutation Share Genetic Results with Underage Children

Area of Science:

• Genetics
• Pediatrics
• Psychology

Background:

• Parents with BRCA1/2 mutations face challenges sharing genetic risk information with underage children.
• Existing resources do not adequately support parents in this communication process.
• Effective communication is crucial for child well-being and informed decision-making.

Purpose of the Study:

• To develop a tool guiding parents with BRCA1/2 mutations in communicating genetic test results to their underage children.
• To address the unmet need for structured support in sharing cancer predisposition information.
• To create a resource that assists parents in preparing for and navigating these sensitive conversations.

Main Methods:

• Qualitative methodology involving focus groups and individual interviews with BRCA1/2 mutation carriers and health professionals.
• Development of a prototype tool based on the International Patient Decision Aids Standards Collaboration framework.
• Iterative refinement of the tool through thematic content analysis and an advisory committee until data saturation.

Main Results:

• Parents desired a comprehensive communication guide rather than a decision aid on whether to share results.
• A communication guidance booklet was developed, including pros/cons, preparation steps, tips, and testimonials.
• The tool addresses a significant need for structured support in communicating genetic risk to children.

Conclusions:

• A communication guidance booklet effectively addresses parents' needs for support in sharing BRCA1/2 mutation results with children.
• This tool can empower parents to navigate complex genetic risk communication with their underage offspring.
• Further research is needed to evaluate the impact of this information on child development and health behaviors.