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

项目摘要/摘要 医学复杂性儿童(CMC)是日益增长的患有特殊疾病的医学脆弱儿童。 具有复杂、多系统疾病状态的卫生保健需求(从出生到21岁)。近1 所有儿童的百分比(大约32万到56万)的医疗复杂性处于最高水平，但这些 儿童占所有儿科医疗保健支出的三分之一，占所有非预期支出的一半以上 重新入院。许多以家庭为中心的自我管理(以下简称自我管理)都发生在家里 和以社区为基础的环境，有巨大的照看需求。这项研究的目标是使用一个 理论驱动的视角，系统地阐述自我管理经验的范围 嵌入在不同社交网络和上下文环境中的CMC家族。既往儿科 研究还没有以解释多种诊断的方式阐明自我管理经验， 社交网络成员的参与，或同时考虑个人和环境 各种因素。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制度层面的因素同时存在。因此，目标是 这项研究的主要内容是：(1)检查CMC的自我管理责任是如何分配和协商的 在多个社交网络成员之间，以及(2)阐述个人和系统层面的因素如何影响 CMC自我管理的方法。本研究采用定性描述的方法来理解 CMC的自我管理实践，借鉴了护理、系统工程、 和公共卫生。它还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理解 CMC。未来的研究努力将包括一项更大规模的多点研究，该研究以研究结果为基础，通过评估 随着时间的推移，自我管理实践的变化，并捕获患者报告的远端的多个视角 和CMC的近期预后。这些联合研究的结果将集中在开发和测试上 干预措施(以教育、技术和政策为导向)，以确定不同的杠杆方式 以及配置CMC Impact患者家庭的社交网络和上下文环境， 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.