Brain Injury Outpatient Education and Care Navigation

项目总结/摘要 创伤性脑损伤（TBI）后的残疾严重影响美国西班牙裔儿童。与非- 西班牙裔儿童，他们有较低的健康相关的生活质量，自我照顾，和沟通技能3年 受伤后;即使出院时不存在差异。长期康复改善 虽然TBI的治疗效果不佳，但及时开始治疗是关键，因为大多数功能恢复发生在TBI后3至6个月。家长扮演 在孩子的康复过程中起着重要作用然而，西班牙裔父母面临着可能导致 延迟治疗开始和次优结局。我们开发并试点测试了第一个基于理论的 西班牙裔儿童及其父母的干预，包括脑损伤教育和门诊 导航（第一次BIEN）。基于社会认知理论，1st BIEN整合了丰富的面对面教育， 通过移动的电话设备提供视频内容，在从 从住院病人到门诊病人以及在返校期间。第一个BIEN试点，确定可行性和可接受性 86%的参与者接受了初步的后续治疗我们提出了一个多中心随机对照 测试第一BIEN维持长期康复依从性的疗效并确定其对以下方面的影响的试验 儿童的功能性结果。我们将入组150对父母-子女配对;儿童（6-17岁），中度至 严重TBI及其父母，来自4个州的5个中心，西班牙裔人口主要来自墨西哥 和中美洲。较高风险组别，其教育程度、收入及英语水平 与美国其他西班牙裔群体相比，随机接受干预的父母将获得（1） 一次面对面的教育课程，使用与文化、语言和识字相关的第一本BIEN小册子，加上 每两周一次的视频回顾，针对儿童的TBI和治疗进行单独定制;（2）三个月的双语 门诊导航，建模和辅导解决问题的技能。注意力控制家长将收到一份 在个人教育课程中，使用第一本BIEN手册、每月非TBI（健康儿童）文本和通常的 机构后续护理。主要结局是出院后6个月的治疗依从性 按在规定时间内在中央急症设施接受随访的百分比分列， 社区护理提供者和个体治疗。次要结果是儿童的功能状态 使用PROMIS父母报告措施;以及，父母健康素养，自我效能和心理健康 在出院后3个月、6个月和12个月测量。孩子们的学习成绩也将被评估 使用学校记录。探索性分析将测试可能的调节因素，如损伤前父母 文化适应;和中介，如干预后父母TBI知识，自我效能，焦虑和 萧条我们的研究评估了一种新颖的，灵活的和可扩展的方法，使用移动的电话设备，以帮助 护理的过渡，增加治疗依从性和改善TBI的结果。它满足了 未充分研究的人群，可以作为TBI家庭为中心的干预风险群体的模式。

PROJECT SUMMARY/ABSTRACT Disability after traumatic brain injury (TBI) significantly affects U.S. Hispanic children. Compared to non- Hispanic children, they have lower health related quality of life, self-care, and communication skills 3 years after injury; even though differences are not present at hospital discharge. Long-term rehabilitation improves outcomes, but timely initiation is key since most functional gains happen 3 to 6 months after TBI. Parents play a significant role in their child’s recovery. However, Hispanic parents face substantial barriers that can result in delayed treatment initiation and suboptimal outcomes. We developed and pilot tested the 1st theory-based intervention for Hispanic children and their parents consisting of Brain Injury Education and outpatient Navigation (1st BIEN). Based on Social Cognitive theory, 1st BIEN integrates in-person education enriched by video content delivered through mobile phone devices, with outpatient navigation during transitions from inpatient to outpatient care and during school return. The 1st BIEN pilot, established feasibility and acceptability for our program and 86% attendance to initial follow-up care. We propose a multicenter randomized controlled trial to test the efficacy of 1st BIEN to maintain long-term adherence to rehabilitation and determine its effect on children’s functional outcomes. We will enroll 150 parent-child dyads; children (6-17 years), with moderate to severe TBI and their parents, from 5 centers in 4 states with Hispanic population predominantly from Mexico and Central America. A higher risk group, whose educational attainment, income and English proficiency are lower compared to other Hispanic groups in the U.S. Parents randomized to the intervention will receive (1) One in-person education session, using the culturally, linguistically and literacy relevant 1st BIEN booklet, plus bi-weekly video reviews individually tailored to the child’s TBI and therapies; and, (2) three months of bilingual outpatient navigation, modeling and coaching problem solving skills. Attention control parents will receive one in person-education session using the 1st BIEN booklet, monthly non-TBI (Well-child) texts and usual institutional follow up care. The primary outcome is treatment adherence at 6 months post-discharge measured by percentage of follow-up appointments attended during the prescribed time at centralized acute facilities, community care providers and individual therapies. Secondary outcomes are functional status of the child using PROMIS parental report measures; and, parental health literacy, self-efficacy and mental health measured at 3, 6, and 12 months after discharge. Children’s academic performance will also be assessed using school records. Exploratory analyses will test possible moderators such as pre-injury parental acculturation; and mediators, such as post intervention parental TBI-knowledge, self-efficacy, anxiety and depression. Our study evaluates a novel, flexible and scalable approach using mobile phone devices to aid transitions of care, increase treatment adherence and improve TBI outcomes. It addresses the needs of an understudied population and can serve as a model for TBI family centered interventions for at risk groups.