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

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

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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