Brain Injury Outpatient Education and Care Navigation

脑损伤门诊教育与护理导航

• 批准号: 10616772
• 负责人: Nathalia Jimenez
• 金额: $ 64.76万
• 依托单位: SEATTLE CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-15 至 2026-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10616772
• 关键词: Acculturation; Active Learning; Acute; Address; Adherence; Adolescent; Affect; Ambulatory Care; Anxiety; Appointment; Area; Brain Injuries; Caring; Cellular Phone; Central America; Child; Child Care; Childhood Injury; Cognitive; Communication; Communities; Community Healthcare; Control Groups; Data; Devices; Education; Educational Status; Effectiveness; Emotional; Enrollment; Exclusion; Face; Family; Future; Health Services; Health care facility; Healthcare; Hispanic; Hispanic Populations; Hospitalization; Hospitals; Immigrant; Improve Access; Income; Individual; Injury; Inpatients; Institution; Intervention; Knowledge; Linguistics; Measures; Mediator; Medicaid; Mental Depression; Mental Health; Mexico; Minority Groups; Modeling; Not Hispanic or Latino; Outcome; Outpatients; Pamphlets; Parents; Participant; Performance; Persons; Physical Function; Play; Population; Population Growth; Populations at Risk; Problem Solving; Proxy; Randomized; Randomized, Controlled Trials; Records; Recovery; Rehabilitation therapy; Reporting; Research; Risk; Risk Factors; Role; Schools; Self Care; Self Efficacy; TBI treatment; Testing; Time; Traumatic Brain Injury; Uninsured; Work; acceptability and feasibility; attentional control; bilingualism; care providers; caregiving; community organizations; comparison control; craniofacial; disability; education planning; education resources; efficacy testing; emotional functioning; flexibility; follow-up; functional gain; functional outcomes; functional status; group intervention; health literacy; health related quality of life; high risk population; improved; improved outcome; intervention effect; literacy; long-term rehabilitation; neurosurgery; novel; outreach; pilot test; post intervention; primary caregiver; primary outcome; programs; secondary outcome; skills; social cognitive theory; social engagement; theories; therapy design; treatment adherence

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.

项目摘要/摘要 创伤性脑损伤(TBI)后的残疾对美国拉美裔儿童影响很大。与非 西班牙裔儿童，他们的健康相关生活质量、自我照顾和沟通技能3年来较低 受伤后；即使在出院时没有差异。长期康复改善 结果，但及时启动是关键，因为大多数功能恢复发生在创伤性脑损伤后3至6个月。父母玩耍 在他们孩子的康复中起着重要的作用。然而，西班牙裔父母面临着巨大的障碍，这可能会导致 延迟的治疗开始和不理想的结果。我们开发并中试了第一个基于理论的 由脑损伤教育和门诊组成的西班牙裔儿童及其家长干预 航海(第一届)。基于社会认知理论，第一编整合了面对面的教育，丰富了 通过移动电话设备提供的视频内容，在从 住院到门诊护理和返校期间。第一批试点，确定了可行性和可接受性 对于我们的计划，86%的出席率是最初的后续护理。我们提出了一种多中心随机对照 试验测试第一个BEN维持康复长期坚持的效果，并确定其对 儿童的功能结果。我们将招收150名亲子二人组；儿童(6-17岁)，中等至 严重的颅脑损伤及其父母，来自4个州的5个中心，拉美裔人口主要来自墨西哥 和中美洲。高危人群，他们的教育程度、收入和英语水平是 与美国其他拉美裔群体相比，随机接受干预的父母将获得(1) 一次面对面教育，使用与文化、语言和识字有关的第一册小册子，外加 两周一次的视频评论，分别针对儿童的脑损伤和治疗；以及，(2)三个月的双语 具备门诊导航、建模和指导解决问题的能力。注意控制家长将收到一份 在个人教育课程中，使用第一本小册子，每月非TBI(好孩子)课本和平时 机构随访护理。主要结果是在出院后6个月测量治疗依从性。 按规定时间内在集中急症中心就诊的后续预约的百分比， 社区护理提供者和个人治疗。次要结果是儿童的功能状态 使用PROMIS父母报告测量；以及父母健康素养、自我效能和心理健康 在出院后3、6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主持人，如受伤前的父母 文化适应；中介因素，如干预后父母的TBI知识、自我效能感、焦虑和 抑郁症。我们的研究评估了一种新颖、灵活和可扩展的方法，使用移动电话设备来帮助 过渡护理，提高治疗依从性，改善创伤性脑损伤预后。它解决了 未被充分研究的人群，可作为高危人群以家庭为中心的脑外伤干预模式。