Peer-reviewed article
Support for Disclosure of Hereditary Tumor Risk to Children and Adolescents: A Scoping Review.
Sugima K, Arimori N, Uchimura M, Miyauchi A, Horiuchi S ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This scoping review examined evidence on resources and support methods for helping parents disclose hereditary tumor risk information to children and adolescents aged 18 and under. The review found ten studies describing eight different resources, including booklets, educational programs, and decision-support tools, most designed for elementary school-aged children. Only three studies evaluated these resources empirically, and most resources focused on genetic concepts and disease information but included less psychosocial support. The review concludes that more rigorous research is needed to develop and evaluate structured interventions that can be used in routine clinical practice.
Key points
- Eight resources for disclosure support were identified, including booklets, picture books, decision-support tools, educational programs, and a family discussion group
- Most resources targeted elementary school-aged children and emphasized parent-led disclosure
- Common content included genetic concepts, disease and inherited risk information, and surveillance measures, but psychosocial elements were inconsistently incorporated
- Only three studies evaluated disclosure support resources: one randomized controlled trial, one pre-post study, and one qualitative study
- Recommended theoretical approaches included decision-support frameworks, health behavior change theories, bibliotherapy, and cognitive developmental theory
Limitations
This is a scoping review mapping the landscape of existing resources rather than evaluating the effectiveness of any single intervention. The review does not provide definitive evidence about which disclosure support approaches work best, as most identified resources have not been empirically tested.
Abstract
Aim This study aimed to map evidence on disclosure support for communicating hereditary tumor-related information to children and adolescents and identify evidence gaps. Methods 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. Results 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. Conclusions 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.