Shared Journeys: Evidence-Based Anticipatory Guidance for Children with Severe Neurologic Impairment

In this Complex Care Journal Club podcast episode, Dr. Julie Hauer and Ms. Jennifer Siedman discuss the development of an anticipatory guidance tool for children with severe neurologic impairment called NeuroJourney, an initiative of the Courageous Parents Network. They describe its grounding in palliative care principles and literature, opportunities to support collaborative relationships between clinicians and families, and next steps from this work. SPEAKERS Julie Hauer, MD Pediatrician, Division of General Pediatrics Boston Children's Hospital Medical Director Seven Hills Pediatrics Center Jennifer Siedman, MEd Director of Community Engagement Courageous Parents Network HOST Emily Goodwin, MD Clinical Associate Professor of Pediatrics, University of Missouri Kansas City School of Medicine Pediatrician, General Academic Pediatrics Beacon Program, Children’s Mercy Kansas City DATES Initial publication: February 5, 2024. JOURNAL ARTICLE Hauer J, Siedman J, Trager C, Thienprayoon R. NeuroJourney. Courageous Parents Network. Accessed Jan 25th, 2024. https://neurojourney.courageousparentsnetwork.org/ OTHER REFERENCES Thienprayoon, R; Lord, BT; Siedman, J; Hauer, J. Creating a “Journey Map” for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. Journal of Pain and Symptom Management. 2023; 65:e270-e271. Orkin J, Beaune L, Moore C, Weiser N, Arje D, Rapoport A, Netten K, Adams S, Cohen E, Amin R. Toward an Understanding of Advance Care Planning in Children With Medical Complexity. Pediatrics. 2020 Mar;145(3):e20192241. doi: 10.1542/peds.2019-2241. TRANSCRIPT https://op-docebo-images.s3.amazonaws.com/Transcripts/Shared+Journeys_+Evidence-Based+Anticipatory+Guidance_020524.pdf Clinicians across healthcare professions, advocates, researchers, and patients/families are all encouraged to engage and provide feedback! You can recommend an article for discussion using this form: https://forms.gle/Bdxb86Sw5qq1uFhW6 Please visit: http://www.openpediatrics.org OPENPediatrics™ is an interactive digital learning platform for healthcare clinicians sponsored by Boston Children’s Hospital and in collaboration with the World Federation of Pediatric Intensive and Critical Care Societies. It is designed to promote the exchange of knowledge between healthcare providers around the world caring for critically ill children in all resource settings. The content includes internationally recognized experts teaching the full range of topics on the care of critically ill children. All content is peer-reviewed and open access-and thus at no expense to the user.For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu CITATION Hauer J, Siedman J, Goodwin EJ. Shared Journeys: Evidence-Based Anticipatory Guidance for Children with Severe Neurologic Impairment. 2/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/shared-journeys-evidence-based-anticipatory-guidance-for-children-with-severe-neurologic-impairment