PLAY-THE-ODDS: Codesigning a communication tool to help parents talk about genetic cancer risk with their children.

Objective: Disclosing hereditary cancer risk (HCR) information to children and maintaining an open communication over time is crucial for family psychosocial adaptation. In the absence of available resources to facilitate education or parental empowerment toward open and developmentally appropriate communication with children, both health providers and parents call for robust supplemental tools to assist them in this process. Werner-Linn proposes a model describing the phases for age-specific communication between parents and children. Theoretically framed in this model, our project aims to develop a game-based tool to help parents and children communicate about HCR. The aim of this paper is to showcase the interdisciplinary codesign process of solutions for this tool.Method: Using a participatory and interdisciplinary approach, we brought together people with HCR syndromes and their families, genetic counselors (GC), psychologists, communication designers and gamification specialists, in a total of 20 participants. We followed a human-centered design process, with the combination of agile methods, focusing on Lean and Biodesign methodologies. Over four codesign workshops, participants identifyed priority needs for each dimension (Wks 1), ideated (Wks 2) and validated solutions (Wks 3), ending by reassessing results and conceptualizing the aggregation of all solutions in an unified resource (Wks 4).Results: The codesign approach in a dynamic and agile environment allowed the participants to feel empowered with strategies to complete the process of finding viable solutions for the needs they identified. Participants expressed gratitude and enthusiasm for being invited and allowed to be part of the solution. At the end of the four workshops, we got a simplified model ready for prototyping, aggregating all the codesigned solutions.Conclusions: The insights shared by end users and the expertise brought by health and design specialists in a codesign process allowed a deeper understanding of the problem of psychosocial adaptation to HCR, while the adoption of agile methodologies allowed the fast-paced creation of solutions to this problem. This experience highlighted the value of interdisciplinary collaboration for the creative development of evidence-based solutions for psychosocial adaptation to HCR.