NeuroJourney
Caregivers accompanying a child with Severe Neurological Impairment (SNI) grapple with a multitude of symptoms and their interconnected causes: pulmonary, endocrine, neuromuscular, gastrointestinal and more. NeuroJourney is a digital journey map designed to help caregivers and others—including their clinicians—understand the interdependence of these many symptoms and anticipate what might occur. Also included are perspectives from families and others on the social and emotional experiences that may or may not yet be in view.
NeuroJourney is an initiative of Courageous Parents Network, developed in partnership with Julie Hauer, MD FAAHPM; Rachel Thienprayoon, MD MSCS FAAHPM FAAP, Cincinnati Children’s Hospital Medical Center; advising medical reviewers, parent authors, content editors.
Origin
NeuroJourney is an initiative of Courageous Parents Network (CPN), created in partnership with Julie Hauer, MD FAAHPM; Rachel Thienprayoon, MD MSCS FAAHPM FAAP, Cincinnati Children’s Hospital; and Live Well Collaborative, Inc.; with significant contributions from advising medical reviewers, parent authors, and content editors.
Suggestions for Using NeuroJourney Resources
Advocacy for the critical role that palliative care or a palliative-aware practice can play in supporting caregivers and building their sense of confidence and agency is woven through NeuroJourney.
Parents/Caregivers
- Understanding interconnected medical considerations
- Guidance to help build the care team
- Reflection on care goals and decisions they may encounter
- Prompts for conversations with specialists, family and others
Clinicians and Clinician-Educators
- Speaking with parents about the interconnectedness of medical considerations as changes in the central nervous system affect other bodily systems
- Preparing caregivers with point of care and anticipatory guidance for the medical, emotional and social issues they may encounter
- Encouraging shared decision-making
- Training clinicians with emphasis on palliative care and palliative-aware practice
Lead Authors
Julie Hauer, MD
Seven Hills Pediatric Center and Boston Children’s Hospital
Jennifer Siedman, MEd
Director of Community Engagement, CPN; mother of Ben (Sanfilippo Syndrome) who lived a full life of 18 years
Carol Trager
Director of Communications and Marketing, CPN
Contributing Authors and Reviewers
Leslie Walsh Cyprych, MS MPH CGC (Genetics)
William Robert (Bob) Defoor, Jr., MD MPH (Urology)
P. Galen DiDomizio, MD (Endocrine)
Arden Hill, MS CCC-SLP (Diet/Nutrition)
Marina Ma, MD (Orthopedics)
Patricia (Pat) O’Malley, MD{‘ ‘}
(Pediatric Palliative Care)
Juliana Mariani, MD (Orthopedics)
Elliot Rabinowitz, MD (Pulmonology)
Sarah Casey, MSEd, Mother of Emerson (Gaucher Disease)
Kacy Seitz, ChFC, CLTC, ChSNC, (Financial Planning)
Steven Smith, MD (Sleep)
Barbara Swoyer, Mother of Jake (Dravet Syndrome)
Lauren Treat, MD (Neurology and Gastroenterology)
Production Team
Zach Brewer, CPN Lead Application Developer
Blyth Lord, CPN, Executive Producer
Alison Me, CPN, Production Assistant
Effie Parks, Once Upon a Gene Podcast, Audio Producer
Devin Rojas, CPN, Associate Application Developer
Jennifer Siedman, CPN, Senior Producer and Director
Carol Trager, CPN, Director of Communications and Marketing