Families of Children With Medical Complexity: A View From the Front Lines

Pediatrics
Carolyn AllshouseNora Wells

Abstract

This article, written by a group of experienced parents of children with medical complexity (CMC), provides an overview of the demands of managing care from their unique perspective. The article articulates why attention to understanding the challenges that families of CMC face with a fragmented health care system, inadequate health insurance coverage, deficits in the delivery of medical care, and problems accessing other critical services (as well as lack of support for children and adolescents in developing and exercising self-management skills) are vital to efforts to improve the current system and positively impact the life course of vulnerable populations. The authors discuss the financial and intangible costs experienced by families of CMC and other stakeholders (including providers, payers, and others), as well as the benefits that can result when effective, flexible, comanaged team-based care coordination is provided within the environment that is the most natural locus of care for the family. The authors detail the role of policy strategies that provide protections for CMC and the importance of family-led advocacy and support organizations in helping families "on the front lines." Throughout the article, the case is ma...Continue Reading

References

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Citations

May 18, 2019·Clinical Pediatrics·Matthew SadofJack Maypole
Dec 4, 2019·Journal of Pediatric Gastroenterology and Nutrition·Rose-Marie SatherleyMonique Germone
Jul 17, 2020·Clinical Pediatrics·Katherine MaiRenee M Turchi
Jun 7, 2020·Archives of Disease in Childhood. Fetal and Neonatal Edition·Monica LemmonUNKNOWN Neonatal Seizure Registry
Sep 3, 2019·Journal of Pediatric Rehabilitation Medicine·James Plews-OganJessica Keim-Malpass
Jul 24, 2020·The Nurse Practitioner·Kathy LindstromAndrea Bushaw
Oct 13, 2020·Journal of the American Medical Informatics Association : JAMIA·Arti D DesaiWanda Pratt
Oct 4, 2020·Hospital Pediatrics·Elaine LinJoseph Truglio
Nov 6, 2020·Journal of the American Medical Informatics Association : JAMIA·Grace WangArti D Desai
Nov 11, 2020·Pediatric Annals·Elisabeth PordesBrett J Bordini
Nov 11, 2020·Pediatric Annals·Holly OwensK Jane Lee
Jan 12, 2021·The Journal of Pediatric Pharmacology and Therapeutics : JPPT : the Official Journal of PPAG·Allison B BlackmerJames A Feinstein
Feb 24, 2021·Journal of Pediatric Nursing·Patricia R LawrenceRegena Spratling
Mar 5, 2021·Journal of Developmental and Behavioral Pediatrics : JDBP·Megan GossSarah S Nyp
Nov 20, 2020·Australian Health Review : a Publication of the Australian Hospital Association·Peter MareePieter Jan Van Dam
Nov 25, 2020·The Journal of Pediatrics·Shogo John MiyagiSonya Tang Girdwood
Sep 26, 2020·Anales de pediatría : publicación oficial de la Asociación Española de Pediatría (A.E.P.)·Daniel Penela-SánchezJuan José García-García
Aug 4, 2021·Journal of Pain and Symptom Management·Sara RizakosJulia Orkin
Sep 1, 2021·Developmental Medicine and Child Neurology·Catherine DiskinEyal Cohen
Sep 5, 2021·Anales De Pediatría·Daniel Penela-SánchezJuan José García-García
Aug 27, 2021·Pediatrics·Laurie GladerLee Sanders

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