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

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 made that families authentically involved at every level of health care systems are critical partners in designing policies and systems that will improve care for CMC. The experiences of families of CMC should inform and guide efforts to improve systems of care, thus positively impacting the life course of this vulnerable population.

journal_name

Pediatrics

journal_title

Pediatrics

authors

Allshouse C,Comeau M,Rodgers R,Wells N

doi

10.1542/peds.2017-1284D

subject

Has Abstract

pub_date

2018-03-01 00:00:00

pages

S195-S201

issue

Suppl 3

eissn

0031-4005

issn

1098-4275

pii

peds.2017-1284D

journal_volume

141

pub_type

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