Families of Children With Medical Complexity: A View From the Front Lines
Families of Children With Medical Complexity: A View From the Front Lines
复制标题
DOI：
10.1542/peds.2017-1284d
复制
发表时间：
2018-03-01
期刊：
影响因子：
8
通讯作者：
Wells, Nora
中科院分区：
文献类型：
--
作者：
Allshouse, Carolyn;Comeau, Meg;Wells, Nora
本文由一群经验丰富的患有医疗复杂性 (CMC) 的儿童家长撰写，从他们独特的角度概述了管理护理的需求。文章阐述了为什么重视了解 CMC 家庭面临的挑战，包括医疗保健系统分散、医疗保险覆盖范围不足、医疗服务提供不足以及获得其他关键服务的问题（以及儿童和青少年在发展和锻炼自我管理技能方面缺乏支持）对于改善现有系统和对弱势群体的生命历程产生积极影响至关重要。作者讨论了 CMC 家庭和其他利益相关者（包括提供者、付款者和其他人）所经历的财务和无形成本，以及在最自然的家庭护理环境中提供有效、灵活、共同管理的基于团队的护理协调时可能带来的好处。作者详细介绍了为 CMC 提供保护的政策战略的作用，以及家庭主导的倡导和支持组织在帮助“前线”家庭方面的重要性。整篇文章都表明，真正参与各级医疗保健系统的家庭是设计改善 CMC 护理的政策和系统的关键合作伙伴。 CMC 家庭的经验应该为改善护理系统的努力提供信息和指导，从而对这一弱势群体的生命历程产生积极影响。
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.