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

项目概要/摘要 患有医疗复杂性 (CMC) 的儿童是数量不断增长的患有特殊疾病的医疗脆弱儿童。 具有复杂、多系统疾病状态的医疗保健需求（出生至 21 岁之间）。近 1 百分之百的儿童（大约 320,000 至 560,000）患有最高水平的医疗复杂性，但这些 儿童占所有儿科医疗保健支出的三分之一以上，占所有意外支出的一半以上 重新入院。大多数以家庭为中心的自我管理（以下简称自我管理）发生在家里 以及具有巨大护理需求的社区环境。本研究的目标是使用 理论驱动的视角系统地阐明了自我管理经验的范围 CMC 的家庭嵌入在不同的社交网络和情境环境中。以前的儿科 研究尚未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 因素。换句话说，自我管理尚未通过对两者的评估进行研究。 个人/家庭/社交网络层面因素和系统层面因素同时存在。因此，目标 本研究的主要内容是： (1) 检查 CMC 的自我管理职责如何分配和协商 多个社交网络成员之间的关系，以及（2）阐明个人和系统层面的因素如何影响 CMC 的自我管理方法。本研究采用定性描述方法来理解 CMC 的自我管理实践，并借鉴护理、系统工程、 和公共卫生。它进一步利用新颖的分析方法来理解协议， 参与自我管理的多个个体之间存在分歧和理解差异 中央军事委员会。未来的研究工作将包括一项更大规模的多地点研究，该研究以评估结果为基础 随着时间的推移自我管理实践的变化，并捕捉患者报告的远端的多个观点 以及 CMC 的近期结果。这些综合研究的结果将集中于开发和测试 干预措施（教育、技术和政策导向）以确定不同的利用方式 配置 CMC 家庭的社交网络和情境环境影响患者报告， 临床和利用结果。

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.