Background: A child’s understanding of their illness heavily depends on their stage of cognitive, physical, and social development. Children who understand their condition can engage in conversations that reduce fear, improve self-confidence, and improve outcomes. By supporting children in understanding their hemophilia, healthcare workers are also acknowledging the patient’s developing autonomy and allowing children to better advocate for their own care.
- To assess current resources available for children with hemophilia according to development stages as defined by Piaget’s stages of cognitive development.
- To design and implement developmentally-appropriate tools for children with hemophilia to help them better understand their disease.
Methods: We identified current resources available for children with hemophilia after consultation from industry, healthcare professionals and patient groups. We identified missing concepts and mediums that facilitate learning at each developmental stage by consulting health care providers including child life specialists, diversity and inclusion specialists, nurses, physiotherapists, and physicians. We developed resources in various mediums to address unmet needs. Through key stakeholder analyses, we sought feedback to improve our resources and ensure inclusivity.
Results: Our review identified several gaps in developmentally-appropriate tools for all stages of development. As a result of this process, we developed multiple resources in collaboration with healthcare professionals (Figure 1).
Resources created include cartoon videos, a hemophilia alphabet book, and video games that follow the growth of a character named Teddy, who has hemophilia, and his care team. Through the development of the resources, we also created questionnaires that will be used for future study to test whether our resources are effective at teaching the intended concepts.
Conclusions: Our investigation illustrated a gap in developmentally-appropriate resources for children with hemophilia resulting in the creation of a series of resources. Future directions include an iterative before-and-after study to test the effectiveness of our resources at delivering the intended concepts.
To cite this abstract in AMA style:L Li C, Seroski N, Sohanlal A, Strike K, Goldsmith R, Decker K, Chan AK. The DATCH Project: Developmentally Appropriate Tools for Children with Hemophilia to Help Them Better Understand Their Disease [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/the-datch-project-developmentally-appropriate-tools-for-children-with-hemophilia-to-help-them-better-understand-their-disease/. Accessed August 16, 2022.
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