Helping young children understand inherited cancer predisposition syndromes using bibliotherapy

Abstract

Communication with children about hereditary conditions in the family can be difficult for parents. Yet, good communication strategies are leading determinants of adaptation and resilience. With inherited cancer predisposition syndromes that can affect young children such as Li‐Fraumeni syndrome (LFS) and hereditary pheochromocytoma and paraganglioma syndrome (HPPS), genetic testing and subsequent surveillance in at‐risk children is the optimal intervention. Given testing often commences early, providing children and their parents with appropriate genetic counseling and communication strategies is important for informed decision making. To inform such communication strategies, we used a bibliotherapeutic framework, where stories are delivered prescriptively (i.e., ‘bibliotherapy’), to develop a psycho‐educational resource for children aged 5–10 years old at risk of either LFS or HPPS. Illustrated storybooks for children were created based on models of developmental comprehension. To ascertain their experience, parents were invited to read a storybook to their child/ren and participate in semi‐structured qualitative interviews. Transcripts were analyzed thematically using a general inductive approach. The bibliotherapeutic resource reportedly supported parents with communication about these issues without raising emotional distress in either themselves or their children. The key stages of a bibliotherapeutic interaction were facilitated by the use of this resource, and all parents reported that it would have been useful when their children were first tested and/or diagnosed. This study lays the foundation for the application of bibliotherapy as a psycho‐educational intervention in genetic counseling and demonstrates that bibliotherapy may improve the process of communication between parents and children regarding pediatric‐inherited cancer syndromes.

Minors at risk of von Hippel-Lindau disease: 10 years’ experience of predictive genetic testing and follow-up adherence

“…In agreement with our procedure, it has been recently reported that bibliotherapy using stories, such as our booklet intended for children, helping children understand inherited cancer predisposition syndromes, was useful for children aged 5-10 years old at risk of either Li-Fraumeni syndrome or hereditary PHEO and paraganglioma syndrome, by improving the process of communication between parents and children 16 .…”

Bibliotherapy: Increasing Understanding of Religious Moderation with Group Counseling

“…The research results of Sidiropoulou & Kountouras (2022) show that bibliotherapy is used to increase one's understanding. Research by Schlub et al (2021) also shows the effectiveness of bibliotherapy as an intervention to provide understanding to someone. Based on the studies above, it can be concluded that bibliotherapy can be used to provide understanding to someone by providing appropriate readings.…”

How I approach the use of bibliotherapy in caring for children with oncologic and hematologic conditions

“…As an interactive therapeutic intervention, bibliotherapy uses storytelling as a means to enhance self‐understanding and promote coping skills for children 3–5 . Storybooks have potential to share information about a diagnosis or a treatment plan or a life adjustment associated with illness to expand the child's knowledge 6,7 . Storybooks can also be used to help children understand and deal with relevant emotions, including impending death 8 .…”