Support for Disclosure of Hereditary Tumor Risk to Children and Adolescents: A Scoping Review

This study aimed to map evidence on disclosure support for communicating hereditary tumor-related information to children and adolescents and identify evidence gaps.

This scoping review was conducted in accordance with the Joanna Briggs Institute methodology and reported in accordance with PRISMA-ScR. Guided by the Population-Concept-Context framework, we identified literature addressing support for disclosing hereditary tumor-related information to children aged ≤ 18 years. PubMed, MEDLINE, CINAHL, and the Cochrane Library were searched through April 2025, without language or study design restrictions. Data were charted and synthesized according to resource characteristics, support content, theoretical foundations, and evaluation approaches.

Ten studies described eight resources, including booklets, picture books, decision-support tools, educational programs, and a multiple-family discussion group. Most resources focused on elementary school-aged children and emphasized parent-led disclosure. Common content included basic genetic concepts, disease and inherited risk information, and surveillance or preventive measures. In contrast, psychosocial elements were less consistently incorporated. Only three studies evaluated disclosure support (i.e., one randomized controlled trial, one pre-post study, and one qualitative study). Reported theoretical foundations included the Ottawa Decision Support Framework, health behavior change theories, bibliotherapy, and cognitive developmental theory.

Only a small number of resources have been empirically evaluated, and psychosocial components were not consistently described or explicitly incorporated. Developmentally appropriate, theory-informed approaches-particularly decision-support and bibliotherapy-based resources-may help families engage in informed disclosure and build shared understanding. Future research should develop, implement, and rigorously evaluate structured interventions suitable for routine clinical practice, in collaboration with children, parents, and healthcare professionals.