Title : Neurojourney: A free, digital, and multilingual anticipatory guidance tool for parents and clinicians caring for children with severe neurological impairment
Abstract:
Courageous Parents Network (CPN) is a US-based, national nonprofit organization that develops resources for parents, and clinicians, caring for children with medical complexity. A large proportion of families served by CPN are caring for children with conditions associated with Severe Neurological Impairment (SNI). To that end, we developed a digital resource, NeuroJourney.org with expert parents and clinicians to provide anticipatory guidance to these families throughout the journey with their child. This collaborative approach ensures the tool is both rooted in scientific evidence and the experiences of families.
SNI is a phrase used to describe a group of conditions, or disorders, that affect the central nervous system. Categories of SNI include metabolic neurodegenerative disorders, genetic conditions and syndromes, developmental epileptic encephalopathy and seizure disorders, and brain malformations, infections, and injuries. As they progress, these conditions commonly result in problems with motor skills, cognitive skills, and other medical complexity. Families of a child with SNI typically encounter both medical issues and daunting physical, social and emotional challenges—all without an integrated way to understand what is occurring and what might occur. Acknowledging that a child with SNI may have a shorter life, NeuroJourney is an educational resource that seeks to help parents and other caregivers consider that life as a full arc. This digital tool presents many aspects of the SNI disease trajectory in a series of phases—the arc of a life—to help parents and other caregivers navigate the present and prepare for the future. Medical considerations are staged along these phases as they commonly occur, discussed through the lens of changes in the central nervous system and how they affect other bodily systems. Psychosocial topics are also represented, along with commentary that brings in a holistic, palliative point of view.
This presentation will address the development of NeuroJourney, strategies for implementation, and feedback from parents and clinicians about its utility. NeuroJourney is available in English, Spanish, Mandarin, French, Arabic, and Portuguese, making it suitable for use within the International Community.
