Seeking Feedback from Families with Children Diagnosed with CD at an Early Age

The Canadian Celiac Association will be modernizing and updating a popular family resource “Growing up Celiac” by creating a video and a companion workbook, containing proactive strategies to support newly diagnosed children and their families in their journey. This project will be generously sponsored in part by Udi’s Gluten Free.

The resources will be intended for children under age 7, recently diagnosed with CD and will provide age-appropriate explanation about the condition. The workbook will be intended for parents to read/work on the provided resources together with their children as well as on their own.

We are currently seeking families with children who were diagnosed at an early age with celiac disease to provide ideas and share tips from your personal experience. We have some questions below to help you get started.

Workbook:

Do you think the workbook should be in a form of a guide to read or should it also contain spaces for parent notes?
We would love to hear tips and empowering quotes form you and your child/ren that can help families with newly diagnosed young children to navigate the adjustment process. It can be related to adjusting to the diagnosis, navigating social situation (like eating out, going on vacation, school environment, parties), and more.
We would appreciate if you can share some of your favourite kids-friendly gluten-free recipes, we can include in the workbook.
Would you /your child/ren like to be interviewed – telling your story about adjustment to the diagnosis, transitioning to a GF diet, navigating through challenges, etc? (can be done by answering questions through email communication)

Video:

What topics do you think should be covered in the video, considering its target audience are children 7 and younger, recently diagnosed with CD?
Do you think one longer video (3-4 min), or a series of several shorter videos (1-1.5 min) will be more useful?
Video format – animated video or the one featuring other children (families) interviewed for the project is preferred?
Would you and/or your child like to be interviewed as a part of the video filming?
Answering any of these questions by replying to this email is highly appreciated. Your experience and wisdom are valuable to us and we appreciate your help on this exciting project.

Please send your responses to: [email protected] by Monday, October 29.