Self-Management Characterization for Children with Medical Complexity and their Social Networks

项目概要/摘要 医学复杂性儿童（CMC）是一个不断增长的医学脆弱儿童群体， 医疗保健需求（从出生到21岁），复杂，多系统疾病状态。近1 %的儿童（约320，000至560，000）具有最高水平的医疗复杂性，但这些儿童 儿童占所有儿科医疗保健支出的三分之一， 再入院大部分以家庭为中心的自我管理（以下简称自我管理）发生在家里 和以社区为基础的环境，有着巨大的生存需求。这项研究的目的是使用一个 理论驱动的角度来系统地阐明自我管理经验的范围， CMC家族嵌入在不同的社交网络和上下文环境中。既往儿科 研究还没有阐明自我管理经验的方式，占多种诊断， 社会网络成员的参与，或同时考虑个人和环境 因素换句话说，自我管理并没有通过对两者的评估来研究。 个人/家庭/社会网络层面的因素和系统层面的因素。因此，目标 本研究的主要内容是：（1）研究CMC自我管理责任的分配和协商 在多个社会网络成员和（2）阐明如何个人和系统层面的因素影响 CMC的自我管理方法。本研究采用定性描述的方法， 自我管理的做法，在CMC和借鉴的理论观点，从护理，系统工程， 和公共卫生。它进一步借鉴了新的分析方法，使人们能够理解协议， 参与自我管理的多个人之间的分歧和不同的理解 CMC。未来的研究工作将包括一个更大的，多地点的研究，该研究通过评估 随着时间的推移，自我管理实践发生了变化，并捕获了患者报告的远端 和CMC的近端结局。这些综合研究的结果将集中在开发和测试 干预措施（教育，技术和政策导向），以确定如何利用不同的方式， 以及配置CMC家庭的社交网络和背景环境影响患者报告， 临床和使用结果。

Project summary/abstract Children with medical complexity (CMC) are a growing population of medically fragile children with special health care needs (between the ages of birth to 21) with complex, multisystem disease states. Nearly 1 percent of all children (roughly 320,000 to 560,000) have medical complexity at the highest levels, yet these children account for up to a third of all pediatric health care spending and more than half of all unintended readmissions. Much of the family-centered self-management (hereafter self-management) occurs in the home and community-based setting with immense caregiving demands. The goal of this study is to use a theoretically-driven perspective to systematically elucidate the range of self-management experiences across families of CMC embedded in diverse social networks and contextual environments. Previous pediatric research has not articulated self-management experiences in ways that account for multiple diagnoses, engagement of social network members, or simultaneous consideration of individual and environmental factors. In other words, self-management has not been studied through assessment of both individual/family/social network level factors and system level factors simultaneously. Consequently, the aims of this study are: (1) Examine how self-management responsibilities for CMC are distributed and negotiated among multiple social network members and (2) explicate how individual and systems level factors influence approaches to self-management for CMC. This study takes a qualitative descriptive approach to understand self-management practices in CMC and draws on theoretical perspectives from nursing, systems engineering, and public health. It further draws on novel analysis methods that enable understanding of agreement, disagreement, and differential understanding among the multiple individuals involved in self-management of CMC. Future research efforts will include a larger, multisite study which builds upon the findings by assessing changes in self-management practices over time and capturing multiple perspectives on patient-reported distal and proximal outcomes for CMC. Findings from these combined studies will focus on developing and testing interventions (educational, technological, and policy oriented) to determine how different ways of leveraging and configuring social networks and contextual environments of families of CMC impact patient-reported, clinical, and utilization outcomes.