HomeVENT (Home Values and Experiences Navigation Track)

项目摘要/摘要 随着医学进步降低儿童死亡率，患有复杂医学疾病的儿童数量正在增加。 严重的疾病，如早产、心脏畸形和遗传综合征。这些孩子中的一些人 呼吸功能不全及其家人面临着关于气管切开和家庭通风的决定。这些 儿童使用最多的儿科保健资源，反复、长期住院和有限 预期寿命。他们和他们的家人面临着生活质量下降的风险，包括行动不便、社会 与世隔绝、金融不稳定和精神紧张。家庭和临床医生都觉得没有准备好权衡 家庭通风对这类儿童的好处和负担。一致的、有意的决策方法- 做爱并不常见，近一半的家庭甚至没有意识到还有选择。 HomeVENT(Home Value&Experience导航路径)是一个深思熟虑的决策支持过程，用于 家属和临床医生。首先，HomeVENT使用结构化的家庭审议机制，让家庭将他们的 将家庭生活背景和价值纳入关于家庭通风的决策。这一干预植根于一部小说 基于网络的工具，弥补了一个关键的咨询缺口：家庭对家庭的信息。其次，HomeVENT包括一个 新颖的结构化团队审议工具，帮助大型、多学科临床团队联合评估儿童的 根据家庭背景和价值观选择治疗方案。来自30个家庭的初步数据显示 从事HomeVENT工作的家庭和临床医生感到更愿意做出关于家庭通风的决定。 我们将招募150个说英语或西班牙语的家庭(n=300名家长)和每个家庭两名临床医生(n=300 临床医生)在4个地理位置不同的机构进行了事前/事后群组设计。儿童符合以下条件即可获得资格 需要在一个月内做气管切开/家庭通风决定。结果将在1、6和12分进行评估 月份。主要结果是家庭为决策做好准备(通过PrepDM)；次要结果 包括家庭和临床医生对共同决策的看法，以及家庭的长期后悔和质量 生活。我们将对与家庭发生冲突或挑战的案例进行探索性分析 通风决策，在这些情况下检查儿童和家庭的结果。所有目标都包括角色分析 健康公平性(种族/民族、收入、农村与城市)在有关儿科家庭通风的决策中。 这项拟议研究的影响将是提高家庭和临床医生决策的质量 关于儿科医疗技术-随着儿科医疗保健的进步，需要做出更频繁的决定。 这项专注于家庭通风的研究，具有改变决策流程和 对患有复杂疾病的儿童的结果。调查结果将为制定类似的决策支持提供参考 其他技术，从家庭透析到喂养管。

PROJECT SUMMARY/ ABSTRACT The number of children with medical complexity is increasing as medical advances reduce mortality from serious illnesses like prematurity, cardiac anomalies, and genetic syndromes. Some of these children have respiratory insufficiency and their families face decisions about tracheostomy and home ventilation. These children utilize the most pediatric healthcare resources, have recurrent, prolonged hospitalizations and limited life expectancies. They and their families are at risk of reduced quality of life including limited mobility, social isolation, financial instability, and mental strain. Families and clinicians alike feel unprepared to weigh the benefits and burdens of home ventilation for such children. Consistent, intentional approaches to decision- making are uncommon, with nearly half of families not even recognizing there is a choice. HomeVENT (Home Values & Experiences Navigation Track) is a deliberative decision-support process for families and clinicians. First, HomeVENT uses a structured family deliberation for families to integrate their home life context and values into decisions about home ventilation. This intervention is anchored in a novel web-based tool that meets a key counseling gap: family-to-family information. Second, HomeVENT includes a novel structured team deliberation tool to help large, multidisciplinary clinical teams jointly assess a child's treatment options in light of the family's home context and values. Preliminary data from 30 families suggests families and clinicians engaged in HomeVENT felt more prepared to make decisions about home ventilation. We will recruit 150 English- or Spanish-speaking families (n=300 parents) and two clinicians per family (n=300 clinicians) in a pre/ post cluster design at 4 geographically diverse institutions. Eligibility is triggered by a child's need for a tracheostomy/ home ventilation decision within a month. Outcomes will be assessed at 1, 6 and 12 months. The primary outcome is family preparedness for decision-making (via PrepDM); secondary outcomes include family and clinician perception of shared decision-making, and long-term family regret and quality of life. We will do an exploratory analysis of cases where there was conflict or challenges with the home ventilation decision, examining child and family outcomes in these scenarios. All Aims include analysis for role of health equity (race/ ethnicity, income, rural vs. urban) in decision-making about Pediatric home ventilation. The impact of this proposed research will be to improve the quality of family and clinician decision-making about pediatric medical technology—decisions needed more frequently as pediatric medical care advances. This research, focused on home ventilation, has far-reaching potential to transform decision processes and outcomes for children with complex illness. Findings will inform development of similar decision supports for other technologies, from home dialysis to feeding tubes.