The diagnosis of a life-threatening illness can be difficult for parents and caregivers to explain to children, as well as difficult for children to understand. While printed educational materials (such as pamphlets or brochures) are common health-related knowledge mobilization tools due to their low cost and ease of distribution and implementation, their overall effectiveness is questionable – particularly in children. Resultingly, many pediatric health organizations have advocated for the development and use of alternative, family-centered tools to address these concerns.

The reading of children’s books is, however, an integral part of childhood.  Along with being central to children’s development and use of imagination, reading children’s books provides a mechanism for children to learn about complex aspects of life.  And when children identify with literary characters and their emotional experiences and situations that emerge from the story’s message, books can be a starting point for discussion, provide greater understanding of circumstances and can allow challenging issues to be confronted in a safe space.

It is known that children with cancer who receive open, age-appropriate communication regarding their diagnosis and prognosis experience significantly less anxiety and depression. Yet, parents often struggle to find the appropriate language to raise difficult topics with their child.

Children’s books can provide both the language parents may need to explain a topic or navigate a difficult conversation, as well as natural prompt the start of those conversations. The act of reading aloud together is also social activity. For many, it is one of those special activities when children are likely to have their parents’/caregivers’ undivided attention, which, in turn, may promote further social and emotional development.

We recognize that there are children’s books on pediatric cancer, written by people with lived experience and others in the pediatric cancer community in Canada, and that these books are at varying stages of completion. We also know of and respect the wealth of information and ideas that exist among the authors of these children’s books.

The ACCESS Book Club is a community of practice that is entirely focused on the development, finalization and publication of children’s books on pediatric cancer.  Specifically, the ACCESS Book Club will bring together authors and provide:

1. the opportunity to share knowledge, provide guidance and collaboratively problem solve issues regarding the authorship, illustration and publication processes
2. insight and feedback on story development
3. virtual, interactive learning and knowledge sharing sessions (such as workshops) on key topics identified by our membership.

The ACCESS Book Club will increase the volume, quality, dissemination, and implementation of children’s books about pediatric cancer stemming from the pediatric cancer community in Canada, which, in turn, will improve their impact and will result in the sharing of knowledge in a way that is focused on the needs, interests, and views of children.

For more information, please contact Tricia Schneider.