HomeVENT (Home Values and Experiences Navigation Track)

项目总结/摘要 随着医学进步降低了死亡率， 严重的疾病，如早产、心脏异常和遗传综合征。有些孩子 呼吸功能不全患者及其家人面临气管切开术和家庭通气的决定。这些 儿童使用最多的儿科医疗资源，反复住院，住院时间延长， 预期寿命他们及其家人面临生活质量下降的风险，包括行动能力有限、社会影响力有限、 孤立、经济不稳定和精神紧张。家庭和临床医生都没有准备好权衡 家庭通风的好处和负担。一致、有意识的决策方法- 在这种情况下，几乎一半的家庭甚至没有意识到有选择。 HomeVENT（家庭价值观和经验导航轨道）是一个审议决策支持过程， 家庭和临床医生。首先，HomeVENT使用结构化的家庭审议，让家庭将他们的 家庭生活环境和价值观到家庭通风的决定。这种干预是锚定在一本小说 基于网络的工具，弥补了一个关键的咨询差距：家庭对家庭的信息。其次，HomeVENT包括一个 一种新颖的结构化团队审议工具，可帮助大型多学科临床团队联合评估儿童的 根据家庭的家庭背景和价值观选择治疗方案。30个家庭的初步数据表明 参与HomeVENT的家庭和临床医生更愿意做出关于家庭通气的决定。 我们将招募150个讲英语或西班牙语的家庭（n=300个父母），每个家庭（n=300个）两名临床医生 临床医生）在4个地理位置不同的机构进行前/后集群设计。资格是由一个孩子的 需要在一个月内做出气管切开术/家庭通气决定。将在1、6和12时评估结局 个月主要结局是家庭决策准备（通过PrepDM）;次要结局 包括家庭和临床医生对共同决策看法，以及长期的家庭遗憾和 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 通气决策，检查这些情况下的儿童和家庭结果。所有目标包括角色分析 健康公平性（种族/民族、收入、农村与城市）在儿科家庭通风决策中的作用。 这项研究的影响将提高家庭和临床医生决策的质量 关于儿科医疗技术的决策需要更频繁的儿科医疗保健的进步。 这项研究，重点是家庭通风，具有深远的潜力，以改变决策过程， 对于患有复杂疾病的儿童。调查结果将为开发类似的决策支持提供信息， 其他技术，从家庭透析到饲管。

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.