From Crisis to Connection: Matching Families with Home Nursing Support in Complex Care

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OPENPediatrics

500 episodes

4 weeks ago

In this Complex Care Journal Club podcast episode, Dr. Jody Lin discusses a qualitative study of shared decision-making for neuromuscular scoliosis surgery in children with medical complexity. She describes a broad range of family values and preferences that may guide decision-making, implications for clinical practice, and next steps from this work.‌ SPEAKER Jody Lin, MD, MS Pediatric Hospitalist Assistant Professor of Pediatrics Division of Inpatient Medicine University of Utah 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: December 8, 2025. JOURNAL CLUB ARTICLE Lin JL, Devereaux T, Simon TD, Kaphingst KA, Zhu A, Narayanan U, Berry ABL, Eppich KG, Stoddard G, Smith JT, Andras L, Heflin J, Keenan HT, Asch SM, Fagerlin A. Caregiver Values and Preferences Related to Surgical Decision-Making for Children with Medical Complexity. J Pediatr. 2025 Jan;276:114366. doi: 10.1016/j.jpeds.2024.114366. Epub 2024 Oct 19. PMID: 39428089; PMCID: PMC11645212. OTHER ARTICLES REFERENCED Courageous Parents Network. Scoliosis and spine / spinal surgery: facts and decision-making. https://courageousparentsnetwork.org/guides/decision-making-around-spinal-fusion-surgery/. Accessed November 14, 2025. Lin JL, Clark CL, Halpern-Felsher B, Bennett PN, Assis-Hassid S, Amir O, Nunez YC, Cleary NM, Gehrmann S, Grosz BJ, Sanders LM. Parent Perspectives in Shared Decision-Making for Children With Medical Complexity. Acad Pediatr. 2020 Nov-Dec;20(8):1101-1108. doi: 10.1016/j.acap.2020.06.008. Epub 2020 Jun 12. PMID: 32540424; PMCID: PMC7655593. Lin JL, Cohen E, Sanders LM. Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey. J Pediatr. 2018 Jan;192:216-222. doi: 10.1016/j.jpeds.2017.09.001. Epub 2017 Nov 6. PMID: 29102046; PMCID: PMC5732902. Lin JL, Tawfik DS, Gupta R, Imrie M, Bendavid E, Owens DK. Health and Economic Outcomes of Posterior Spinal Fusion for Children With Neuromuscular Scoliosis. Hosp Pediatr. 2020 Mar;10(3):257-265. doi: 10.1542/hpeds.2019-0153. PMID: 32079619; PMCID: PMC7041549.‌ TRANSCRIPT https://cdn.bfldr.com/D6LGWP8S/at/xcz7qm4n2b9rn636rrnq/Jody_Lin_Final_transcript_12-4-25.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: 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 Lin JL, Huth K. Exploring What Matters: What Families Value in Complex Surgical Decision-Making. 12/2025. OPENPediatrics. Online Podcast. https://soundcloud.com/openpediatrics/exploring-what-matters-what-families-value-in-complex-surgical-decision-making.

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From Crisis to Connection: Matching Families with Home Nursing Support in Complex Care

OPENPediatrics

26 minutes 29 seconds

4 months ago

From Crisis to Connection: Matching Families with Home Nursing Support in Complex Care

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.

OPENPediatrics