Improving Transition Outcomes for Youth with Autism through Parent Advocacy Training: A Multi-State Randomized Controlled Trial

通过家长宣传培训改善自闭症青少年的过渡结果：多州随机对照试验

• 批准号: 10549301
• 负责人: Julie Lounds Taylor
• 金额: $ 75万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-02-01 至 2024-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10549301
• 关键词: Address; Adult; Advocacy; Advocate; Age; Area; Communities; Control Groups; Data; Data Collection; Education; Educational Activities; Employment; Evidence based program; Face; Family; Future; Goals; Health Services Accessibility; Illinois; Intervention; Knowledge; Mediating; Modification; Outcome; Parents; Prevalence; Productivity; Quality of life; Randomized; Randomized, Controlled Trials; Reporting; Research; Schools; Secondary Schools; Services; Site; Social isolation; Socioeconomic Status; Strategic Planning; Stress; System; Tennessee; Testing; Time; Training; Training Programs; Update; Waiting Lists; Wisconsin; Work; Youth; adolescent with autism spectrum disorder; aged; autism spectrum disorder; autistic children; cost; effectiveness testing; efficacy testing; empowerment; evidence base; high school; improved; improved outcome; individuals with autism spectrum disorder; innovation; interest; life time cost; novel strategies; offspring; post intervention; programs; skills; social engagement; societal costs; treatment effect; treatment response; volunteer; young adult

PROJECT SUMMARY In the proposed research, we conduct a randomized-controlled trial with 180 families to test the effectiveness of a parent advocacy training to improve the transition to adulthood for youth with autism spectrum disorder (ASD). The years immediately after high school exit are a critical time period that either makes or breaks a successful transition to adulthood. If they don't go well, disengagement from post-secondary education, work, and social isolation can persist throughout adulthood, leading to significant societal costs. Despite the pressing need to better support youth with ASD during this turbulent time, few interventions for these youth have been developed and even fewer tested. Our preliminary work has demonstrated the efficacy of a 12-week parent training program targeting parents' ability to advocate for services on behalf of their offspring (called the “Volunteer Advocacy Program-Transition” or VAP-T), in improving the transition to adulthood for youth with ASD. Relative to a wait-list control group, youth whose parents participated in the VAP-T were more likely to be employed or in post-secondary education, and they received more school-based and adult services. The proposed project builds on this pilot work in four important ways: 1) by making modifications to the VAP-T content to make it nationally-applicable and testing whether the VAP-T is effective when delivered across three states; 2) by incorporating the perspective of offspring with ASD into the intervention and data collection; 3) by examining mechanisms by which the VAP-T influences youth outcomes; and 4) by exploring barriers to participation and factors that moderate treatment response. We hypothesize that participating in the VAP-T will improve parents' advocacy ability, leading to higher rates of employment, post-secondary education, social participation, and service access for youth with ASD. We will test this hypothesis by randomly assigning parents of transition-aged youth with ASD (ages 16-26) to either a treatment or active, materials-only control group, and following families over 3 years. We propose four Specific Aims: (1) To use a multi-site randomized- controlled trial to examine whether VAP-T participation increases parent advocacy ability (i.e. the intervention target); (2) To test whether participating in the VAP-T leads to improved youth outcomes (employment, post- secondary education, social participation, service access) during the transition to adulthood; (3) To examine which aspects of parent advocacy ability mediate the relations between VAP-T participation and youth outcomes; and (4) To explore moderators of treatment response and barriers to participation in the intervention. By rigorously testing a new intervention to improve the transition to adulthood for youth with ASD, the proposed research addresses an area of critical need as identified by the 2016-7 Interagency Autism Coordinating Committee Strategic Plan. The project will result in a new intervention to improve outcomes for youth with ASD that can be disseminated through state and local agencies across the nation.

项目摘要 在拟议的研究中，我们对180个家庭进行了随机控制试验，以测试有效性 父母的倡导培训，以改善自闭症谱系障碍青年的成年过渡 （ASD）。高中退出后的几年是一个关键时期 成功过渡到成年。如果他们走得不好，会脱离上学后教育，工作， 社会隔离可以在整个成年期间持续存在，从而导致巨大的社会成本。尽管紧迫 在这个动荡的时期，需要更好地支持ASD的青年，这些年轻人很少有干预措施 开发甚至更少的测试。我们的初步工作证明了一个12周的父母的效率 培训计划针对父母代表其后代倡导服务的能力（称为 “志愿者倡导计划转变”或VAP-T），改善了青年成年的过渡 ASD。相对于等待名单对照组，父母参加VAP-T的青年更有可能是 受雇或接受大专教育，他们获得了更多基于学校和成人的服务。 拟议的项目以四种重要方式建立在此试点工作的基础上：1）通过对VAP-T进行修改 满足使其在全国范围内进行的，并测试VAP-T在三个交付时是否有效 国家2）将后代与ASD的观点纳入干预和数据收集中； 3） 研究VAP-T会影响青年结果的机制； 4）通过探索障碍 参与和适度治疗反应的因素。我们假设参加VAP-T将 提高父母的倡导能力，导致较高的就业率，专上教育，社会 参加ASD的年轻人的参与和服务访问。我们将通过随机分配来检验该假设 ASD过渡时代青年的父母（16-26岁）接受治疗或活跃的仅材料控制 小组，跟随家庭超过3年。我们提出了四个具体目标：（1）使用多站点随机 - 对照试验检查VAP-T参与是否增加了父母的倡导能力（即干预 目标）; （2）测试参加VAP-T是否会改善青年结果（就业，后 中学教育，社会参与，服务访问）在过渡到成年期间； （3）检查 父母倡导能力的哪些方面调解了VAP-T参与与青年之间的关系 结果； （4）探索治疗反应和参与障碍的主持人 通过严格测试新的干预措施，以改善ASD青年成年的过渡， 拟议的研究涉及2016 - 7年机构间自闭症所确定的关键需求领域 协调委员会战略计划。该项目将导致新的干预措施，以改善 可以通过全国各州和地方机构传播的ASD的年轻人。