Author: Chrissy Salley, Ph.D. on behalf of Courageous Parents Network
Caregivers accompanying a child with Severe Neurological Impairment (SNI) face a daunting landscape in which they must adapt to the reality of an uncertain future, make critical decisions, and navigate the ever-evolving needs of their child. They must grapple with a multitude of symptoms and their interconnected causes: pulmonary, endocrine, neuromuscular, gastrointestinal and more. Despite the vast educational and emotional needs of these families, there are few resources to support them.
To address this gap, Courageous Parents Network (CPN) developed NeuroJourney (NeuroJourney.org), a digital journey map designed to help caregivers and others—including their clinicians—understand the interdependence of many symptoms and anticipate what might occur over the course of their child’s life. NeuroJourney explores, in phases as they might occur in the illness journey, the effect of these conditions on the central nervous system and other bodily systems. NeuroJourney also explores the many psychosocial needs (e.g., the sibling experience, coping with grief, guilt, and regret, and spirituality) that caregivers also face.
NeuroJourney emphasizes the critical role that palliative care, or palliative-aware practice, can play in bolstering caregivers’ sense of agency and confidence. The development it’s content of this tool was led by a pediatric palliative care physician, Julie Hauer, MD FAAHPM, and a parent of a child with Sanfilippo syndrome, Jennifer Siedman, with additional contributions by other expert clinicians and parents. This collaborative process, with both professional and family perspectives represented, resulted in accurate information compassionately delivered.
NeuroJourney launched in November 2023 and has been used by 12,000 families and clinicians to date. The tool has since been translated into Spanish and French; Arabic, Portuguese, and Mandarin will also be available to users by the end of 2025. In qualitative and quantitative study, caregivers have reported that they better understand their child’s condition after exploring NeuroJourney. They commonly share that they wish they had access to the tool sooner in their child’s life. Clinicians have added that NeuroJourney is a powerful tool for educating both families and colleagues.
With this launch, CPN reaffirms its commitment to inclusivity and accessibility, ensuring that more families caring for a child with a serious medical condition can find comfort, community, and empowerment along their journey.
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