In this Complex Care Journal Club podcast episode, Dr. Lewis First and Ms. Cara Coleman discuss the role of the journal Pediatrics in disseminating emerging evidence in complex care and disability. They describe the unique Family Partnerships column, the inclusive decision-making process for publication, and opportunities for clinicians and families to engage with the journal.

SPEAKERS
Lewis R. First, MD, MS
Editor-In-Chief, Pediatrics
Professor and Chair, Department of Pediatrics,
The University of Vermont Robert Larner, M.D. College of Medicine

Cara L. Coleman, JD, MPH
Associate Editor, Pediatrics
Instructor of Medical Education,
UVA Medicine Inova campus

HOST
Kathleen Huth, MD, MMSc
Pediatrician, Complex Care Service, Division of General Pediatrics
Boston Children's Hospital
Assistant Professor of Pediatrics
Harvard Medical School

DATES
Initial publication: December 4, 2023.

ARTICLES REFERENCED
https://publications.aap.org/pediatrics/pages/author-instructions#family_partnerships

https://publications.aap.org/pediatrics/resources/26567/commentary-from-the-council-on-children-with

Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011 Mar;127(3):529-38. doi: 10.1542/peds.2010-0910. Epub 2011 Feb 21. PMID: 21339266; PMCID: PMC3387912.

Agrawal R, Stille C, Editors.
Building Systems That Work for Children With Complex Health Care Needs
March 2018, Vol 141, Supplement 3
https://publications.aap.org/pediatrics/issue/141/Supplement_3

Brown TW, McLellan SE, Mann MY, Scott JA. Guest Editors
Blueprint for Change: A National Framework for a System of Services for Children and Youth with Special Health Care Needs
June 2022, Vol 149, Supplement 7
https://publications.aap.org/pediatrics/issue/149/Supplement%207

TRANSCRIPT
https://op-docebo-images.s3.amazonaws.com/Transcripts/+Collective+Voice_A+Conversation+about+Complex+Care_120523+.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: 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.

CITATION
First LR, Coleman CL, Huth K. Collective Voice: A Conversation about Complex Care and Disability in the Journal Pediatrics. 12/2023. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/collective-voice-a-conversation-about-complex-care-and-disability-in-the-journal-pediatrics

Collective Voice: A Conversation About Complex Care And Disability In The Journal Pediatrics

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

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

In this Complex Care Journal Club podcast episode, Dr. Kate Nelson discusses a qualitative study exploring decision-making skills developed by family caregivers of children with medical complexity. She describes the impact of contextual factors and relationships within care teams on decision-making, family partnership in research, and the next steps from this work﻿.

SPEAKER
Kate Nelson, MD, PhD
Staff Pediatrician, Paediatric Advanced Care Team
The Hospital for Sick Children
Scientist
SickKids Research Institute
Assistant Professor﻿
University of Toronto

HOST
Kathleen Huth, MD, MMSc
Pediatrician, Complex Care Service, Division of General Pediatrics
Boston Children's Hospital
Assistant Professor of Pediatrics
Harvard Medical School

DATE
Initial publication date: August 5, 2024.

Journal Club Article
Finlay M, Chakravarti V, Buchanan F, Dewan T, Adams S, Mahant S, Nicholas D, Widger K, McGuire KM, Nelson KE. Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity. J Pain Symptom Manage. 2024 May 28:S0885-3924(24)00792-9. doi: 10.1016/j.jpainsymman.2024.05.023. Epub ahead of print. PMID: 38810951.

TRANSCRIPT
https://op-docebo-images.s3.amazonaws.com/Transcripts/Choice+and+Voice+Family+Perspectives+on+Decision-making+for+Children+_nelson_080524.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
Nelson K, Huth K. Choice and Voice: Family Perspectives on Decision-making for Children with Medical Complexity. 8/2024. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/choice-and-voice-family-perspectives-on-decision-making-for-children-with-medical-complexity

Choice and Voice: Family Perspectives on Decision-making for Children with Medical Complexity

In this special Complex Care Journal Club podcast episode, co-hosts Drs. Kilby Mann and Kristie Malik interview presenters of posters and oral abstracts relevant to the care of children with medical complexity at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) 78th Annual Meeting in Quebec City, Canada that took place October 23rd-26th 2024. Speakers describe the implications of their study findings, messages for patients and families, and priority areas for research that they hope can be investigated further by the complex care community in the coming years.

SPEAKERS
Tori Bahr, MD
MedPeds Complex Care Physician
Section Chief of Pediatrics
Gillette Children's, St. Paul, Minnesota

Laura Brunton, PT, PhD 
Associate Professor 
School of Physical Therapy 
Western University, London, Ontario

Caitlin Cassidy, MD
Associate Professor
Departments of Physical Medicine & Rehabilitation and Pediatrics
Western University, London, Ontario

Adam Rosenbloom, MD, MPH
Complex Care Pediatrician
Dell Children's Medical Center
University of Texas at Austin, Dell Medical School

Cristina Sarmiento, MD
Assistant Professor
Department of Physical Medicine and Rehabilitation
University of Colorado Anschutz Medical Campus, Aurora, Colorado

Julie Stutzbach, PT, DPT, PhD
Assistant Professor 
School of Rehabilitative and Health Sciences
Regis University, Denver, Colorado

HOSTS
Kristina Malik, MD
Assistant Professor of Pediatrics,
University of Colorado School of Medicine
Medical Director, KidStreet
Pediatrician, Special Care Clinic,
Children's Hospital Colorado

Kilby Mann, MD
Assistant Professor
Pediatric Rehabilitation Medicine
Children's Hospital Colorado

DATE
Initial publication date: November 11, 2024. 

ARTICLES AND ADDITIONAL REFERENCES
• American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), https://www.aacpdm.org/

• AACPDM Complex Care Committee (https://www.aacpdm.org/about-us/committees/complex-care)

• Houtrow AJ, Hurwitz MB. A dearth of disability-related competencies in Accreditation Council for Graduate Medical Education's Milestones 2.0. PM R. 2024 Aug 23. doi: 10.1002/pmrj.13257. Epub ahead of print. PMID: 39177053.﻿

• Fehlings D, Agnew B, Gimeno H, Harvey A, Himmelmann K, Lin JP, Mink JW, Monbaliu E, Rice J, Bohn E, Falck-Ytter Y. Pharmacological and neurosurgical management of cerebral palsy and dystonia: Clinical practice guideline update. Dev Med Child Neurol. 2024 Sep;66(9):1133-1147. doi: 10.1111/dmcn.15921. Epub 2024 Apr 19. PMID: 38640091.

• AACPDM Care Pathway Dystonia in Cerebral Palsy, https://www.aacpdm.org/publications/care-pathways/dystonia-in-cerebral-palsy

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/p9pj6g7sxn5kjmmgps5wnk4/111124_-_Complex_Care_at_the_American_Academy_for_Cerebral_Palsy_and_Developmental_Medicine_Annual_Meeting

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: forms.gle/Bdxb86Sw5qq1uFhW6

CITATION
Malik K, Bahr T, Brunton L, Cassidy C, Rosenbloom A, Sarmiento C, Stutzbach J, Mann K. Complex Care at the American Academy for Cerebral Palsy and Developmental Medicine Annual Meeting. 11/2024. OPENPediatrics. Online Podcast.. https://soundcloud.com/openpediatrics/complex-care-at-the-aacpdm-2024.

Complex Care at the American Academy for Cerebral Palsy and Developmental Medicine Annual Meeting

In this Complex Care Journal Club podcast episode, Dr. Kathleen C. Thomas discusses a cross-sectional study of associations between neighborhood context with psychotropic polypharmacy and psychotherapy among children with high-needs for medical or psychiatric care. She describes the inclusion of parent advisors on the study team, the inclusion of children with medical complexity in the study population, key insights including the importance of non-medical supports, and the next steps from this work.

SPEAKER
Kathleen C. Thomas, PhD, MPH
Professor and Vice Chair of Research and Graduate Education
Division of Pharmaceutical Outcomes and Policy
Eshelman School of Pharmacy
University of North Carolina at Chapel Hill

HOST
Kristina Malik, MD
Assistant Professor of Pediatrics,
University of Colorado School of Medicine
Medical Director, KidStreet
Pediatrician, Special Care Clinic,
Children's Hospital Colorado

DATE
Initial publication date: January 13, 2025.

ARTICLE REFERENCED
Thomas KC, Annis IE, deJong NA, Christian RB, Davis SA, Hughes PM, Prichard BA, Prichard JR, Allen PS, Gettinger JS, Morris DN, Eaker KB. Association Between Neighborhood Context and Psychotropic Polypharmacy Use Among High-Need Children. Psychiatr Serv. 2024 Sep 11:appips20230639. doi: 10.1176/appi.ps.20230639. Epub ahead of print. PMID: 39257315.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/3rffshwp3q2km53w7xckq38/011025_CCJCP__Where_You_Live_Matters

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: 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
Thomas KC, Malik KE. Where You Live Matters: Psychotropic Polypharmacy and Psychotherapy in Children with High-Needs‌. 01/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/where-you-live-matters-psychotropic-polypharmacy-and-psychotherapy-in-children-with-high-needs.

Where You Live Matters: Psychotropic Polypharmacy and Psychotherapy in Children with High-Needs‌

In this Complex Care Journal Club podcast episode, Ms. Pearce and Dr. Synnes discuss a series of patient-oriented research studies aimed at partnering with parents in reimagining meaningful outcomes for premature infants. They describe the inclusion of parents on the study team, recruitment of parent participants, lessons and challenges while conducting the study, messages for other researchers and parents, and the next steps from this work.

SPEAKERS
Rebecca Pearce, B. Ed, MSc
Vice Principal
Villa Maria High School
Parent Partner
CHU Sainte-Justine and Canadian Premature Babies Foundation‌

Anne Synnes, MDCM, MHSc
Clinical Professor, Neonatologist
University of British Columbia
British Columbia's Women's Hospital and British Columbia's Children's Hospital Research Institute

HOST
Kilby Mann, MD
Assistant Professor
Pediatric Rehabilitation Medicine
Children's Hospital Colorado

DATE
Initial publication date: February 10, 2025.

ARTICLES REFERENCED
Pearce R, Synnes A, Lam MM, Richter LL, Bacchini F, Jones M, Luu TM, Janvier A; PARENTS’ VOICE NETWORK. Partnering With Parents to Change Measurement and Reporting of Preterm Birth Outcomes. Pediatrics. 2024 Nov 1;154(5):e2024067093. doi: 10.1542/peds.2024-067093. PMID: 39354888.

Haslam MD, Lisonkova S, Creighton D, Church P, Yang J, Shah PS, Joseph KS, Synnes A; Canadian Neonatal Network and the Canadian Neonatal Follow-Up Network. Severe Neurodevelopmental Impairment in Neonates Born Preterm: Impact of Varying Definitions in a Canadian Cohort. J Pediatr. 2018 Jun;197:75-81.e4. doi: 10.1016/j.jpeds.2017.12.020. Epub 2018 Feb 3. PMID: 29398054.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/p65m4p98gppf65mz3zhmm9g/February_Pearce_and_Synnes_ccjcp_final_revisions‌

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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Pearce R, Synnes A, Mann K. Focus on Abilities: Parent-Identified Outcomes of Preterm Infants. 2/2025. OPENPediatrics. Online Podcast: https://soundcloud.com/openpediatrics/focus-on-abilities-parent-identified-outcomes-of-preterm-infants

Focus on Abilities: Parent-Identified Outcomes of Preterm Infants‌

In this Complex Care Journal Club podcast episode, Dr. Cristina Sarmiento discusses a qualitative study exploring experiences of young adults with cerebral palsy and their caregivers with transition to adult care. She describes the major barriers and facilitators to transition, challenges and opportunities related to conducting the study, implications for practice, and next steps from this work.

SPEAKER
Cristina Sarmiento, MD
Assistant Professor
University of Colorado Anschutz Medical Campus

HOST
Emily J. 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

DATE
Initial publication date: March 10, 2025.

ARTICLE REFERENCED
Sarmiento CA, Wyrwa JM, Glaros C, Holliman BD, Brenner LA. Experiences of young adults with cerebral palsy in pediatric care transitioning to adult care. Dev Med Child Neurol. 2025 Jan;67(1):99-110. doi: 10.1111/dmcn.15907. Epub 2024 Mar 24. PMID: 38523396.‌

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/63kfcjrfv57nh4t8qbrhrvj/March_CCJCP_Sarmiento_transcript_Final_3-5‌

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: 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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Sarmiento, C, Goodwin EJ.  Let’s Talk about Transition: Experiences of Young Adults with Cerebral Palsy and their Caregivers. 3/2025. OPENPediatrics. Online Podcast.



Let’s Talk about Transition: Experiences of Young Adults with Cerebral Palsy and Their Caregivers‌

In this special Complex Care Journal Club podcast episode, co-hosts Emily Goodwin, Kristie Malik, and Kathleen Huth interview presenters of posters and oral abstracts relevant to the care of children with medical complexity at the Pediatric Academic Societies (PAS) 2025 annual meeting. Speakers describe the implications of their study findings, messages for patients and families, and priority areas for research that they hope can be investigated further by the complex care community in the coming years.

SPEAKERS
Lucas Bruton, MD, MEd
Instructor of Pediatrics
Northwestern University

Hannah Lane, PhD, MPH
Assistant Professor
Duke  School of Medicine

Jennifer B. Peralta, MD, MSHPM, MS
Health Sciences Clinical Instructor
UCLA Department of Pediatrics
David Geffen School of Medicine

Amy Porter, MD, PhD
Physician-Investigator, Instructor
Mass General for Children
Massachusetts General Hospital
Harvard Medical School

Elaina Schueler, BA
Clinical Research Coordinator
Medical College of Wisconsin

Rebecca Steuart, MD, MS
Assistant Professor of Pediatrics
Medical College of Wisconsin
 
Aditi Vasan, MD, MSHP
Assistant Professor of Pediatrics
University of Pennsylvania and Children's Hospital of Philadelphia

Peter Walsh, BA
Behavioral Research Coordinator
Ann and Robert H. Lurie Children's Hospital of Chicago

HOSTS
Kristina Malik, MD
Assistant Professor of Pediatrics,
University of Colorado School of Medicine
Medical Director, KidStreet
Pediatrician, Special Care Clinic,
Children's Hospital Colorado

Emily J 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

Kathleen Huth, MD, MMSc
Pediatrician, Complex Care Service, Division of General Pediatrics
Boston Children's Hospital
Assistant Professor of Pediatrics
Harvard Medical School

DATE
Initial publication date: May 12, 2025.

REFERENCE
Pediatric Academic Societies. Who we are. Accessed April 29, 2025. https://www.pas-meeting.org/about/

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/at/ng43ccschnbg2vfnp9wq7v5h/CCJCP_May_Conference_5-9-25.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: forms.gle/Bdxb86Sw5qq1uFhW6n using this form: 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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Goodwin EJ, Malik K, Bruton L, Lane H, Peralta JB, Porter AS, Schueler E, Steuart R, Vasan A, Walsh P﻿, ﻿﻿﻿Huth K. Practice-Changing Research in Complex Care at the Pediatric Academic Societies 2025 Annual Meeting. 5/2025. OPENPediatrics. Online Podcast.

Practice-Changing Research in Complex Care at the Pediatric Academic Societies 2025 Annual Meeting

In this Complex Care Journal Club podcast episode, Dr. Robbie Dembo and Ms. Kate Honsberger discuss a mixed methods study of oral health experiences and disparities among children with special health care needs. They describe oral health problems faced by children with medical complexity, barriers to high-quality dental care reported by family caregivers, and strategies for disseminating findings from their study.

SPEAKERS
Robbie Dembo, PhD
Senior Research Scientist
Principal Investigator
National Opinion Research Center (NORC)
University of Chicago

Kate Honsberger, BA
Director, Health Care Programs 
National Opinion Research Center (NORC)
University of Chicago

HOST
Kristina Malik, MD
Assistant Professor of Pediatrics,
University of Colorado School of Medicine
Medical Director, KidStreet
Pediatrician, Special Care Clinic,
Children's Hospital Colorado

DATE
Initial publication date: August 11, 2025.

JOURNAL CLUB ARTICLE
NORC at the University of Chicago. Oral Health Among Children with Special Health Care Needs. Accessed August 4, 2025. https://www.norc.org/research/projects/oral-health-children-special-health-care-needs.html

OTHER ARTICLES REFERENCED
Child and Adolescent Health Measurement Initiative. Shared care planning for children with special health care needs.  Accessed August 4, 2025. https://www.cahmi.org/our-work-in-action/engagement-in-action/cshcn

Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011 Mar;127(3):529-38. doi: 10.1542/peds.2010-0910. Epub 2011 Feb 21. PMID: 21339266; PMCID: PMC3387912.

Yu JA, McKernan G, Hagerman T, Schenker Y, Houtrow A. Identifying children with medical complexity from the National Survey of Children’s Health combined 2016–17 data set. Hospital Pediatrics. 2021;11(2):192- 197. doi:10.1542/hpeds.2020-0180

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/9767nfr2rj79c2hft2cc3g8/Dembo_and_Hornsberget_final_8-7-25‌

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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Dembo R, Honsberger K, Malik K. Brushing Up on High-Quality Oral Health Care for Children with Medical Complexity. 08/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/brushing-up-on-high-quality.

Brushing Up on High-Quality Oral Health Care for Children with Medical Complexity

In this Complex Care Journal Club podcast episode, Ms. Kathryn Knight and Dr. Brian K. Jordan discuss a national survey of families of children with medical complexity on access to home health nursing. They describe the impact of the nursing shortage on families, development of a nonprofit resource that facilitates connections between families and home nursing, and outline next steps from this work.

Learn more about Hello Nurze: www.hellonurze.com
Find additional details about the F.A.C.E.S. Project: www.hellonurze.com/p/faces-project

SPEAKERS
Kathryn Knight, BBA
Co-Founder & Executive Director, Hello Nurze

Brian K. Jordan, MD, PhD
Associate Professor
Oregon Health & Science University

HOST
Emily J. 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

DATE
Initial publication date: September 8, 2025.

JOURNAL CLUB ARTICLE
Knight K, Knight G, Jordan BK. The Impact of the Lack of Access to Home Health Nursing on Families of Children with Medical Complexity in the United States. Home Healthc Now. 2025 Jul-Aug 01;43(4):213-220. doi: 10.1097/NHH.0000000000001356. Epub 2025 Jul 7. PMID: 40619624.

OTHER ARTICLES REFERENCED
Baker CD, Martin S, Thrasher J, Moore HM, Baker J, Abman SH, Gien J. A Standardized Discharge Process Decreases Length of Stay for Ventilator-Dependent Children. Pediatrics. 2016 Apr;137(4):e20150637. doi: 10.1542/peds.2015-0637. Epub 2016 Mar 10. PMID: 26966133; PMCID: PMC4811306.

Hello Nurze. Connecting families and in-home nurses. Accessed August 27, 2025. https://www.hellonurze.com

Moore PE, Boyer D, O'Connor MG, Baker CD, Rettig JS, Sterni L, Halbower A, Wilson KC, Thomson CC. Pediatric Chronic Home Invasive Ventilation. Ann Am Thorac Soc. 2016 Jul;13(7):1170-2. doi: 10.1513/AnnalsATS.201603-196CME. PMID: 27388405; PMCID: PMC5462000.

TRANSCRIPT
https://cdn.bfldr.com/D6LGWP8S/as/87x9cmw5xfnkkt74v5g5pv3/Jordan_and_Knight_Final_Transcript__9-5-25‌

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 thus at no expense to the user. For further information on how to enroll, please email: openpediatrics@childrens.harvard.edu

CITATION
Knight K, Jordan BK﻿﻿, Goodwin EJ. From Crisis to Connection: Matching Families with Home Nursing Support in Complex Care. 09/2025. ﻿OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/from-crisis-to-connection-matching-families-with-home-nursing-support-in-complex-care.

New tracks tagged #Complex Care Journal Club Podcast