This knowledge exchange and dissemination (KED) initiative proposes to develop a variety of educational and informative resources using different technological media (audio, video and e-authoring tools) which will be delivered online in a designated website to support the translation of research evidence on childhood epilepsy disclosure into practice. This is important because diagnosis disclosure is a source of family concern and this research will provide novel insights for health professionals to enable them to help families navigate the disclosure decision-making process.
The resources will be tailored and accessible to different target audiences including children with epilepsy and their parents, clinicians who provide paediatric epilepsy services, public advocates for epilepsy and members of the general public. This is important for fashioning key research messages into appropriate languages and knowledge translation products that can be easily understood and assimilated by the different target audiences.
To develop the resources we will work collaboratively with an educational technologist and a small group of stakeholders with a specific interest in childhood epilepsy disclosure. Our vision is that this group would naturally evolve into a sustainable Community of Practice (CoP) (i.e. group of people with a common interest who interact, learn about and shape best practice); the focus of which will be to improve/evaluate the care and support offered to children with epilepsy and their parents as they navigate the disclosure decision-making process. To commence the growth of this CoP, this KED activity will implement five ‘community building’ lifecycle stages; inquire, design, prototype, development and launch.
