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: 10319569
• 负责人: Julie Lounds Taylor
• 金额: $ 80.24万
• 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 2023-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10319569
• 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; Waiting Lists; Wisconsin; Work; Youth; adolescent with autism spectrum disorder; aged; autism spectrum disorder; autistic children; base; 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.

项目总结 在拟议的研究中，我们对180个家庭进行了随机对照试验，以测试其有效性 为改善患有自闭症谱系障碍的青少年向成年的过渡而进行的家长倡导培训 (ASD)。高中毕业后的几年是一个关键的时间段，要么成就一个，要么打破一个 成功过渡到成年。如果他们进展不顺利，脱离高等教育，工作， 社会孤立可能会持续整个成年期，导致巨大的社会成本。尽管压力很大 在这个动荡的时期，需要更好地支持患有自闭症的年轻人，但对这些年轻人的干预措施很少 开发出来的，测试的更少。我们的初步工作证明了12周的父母的有效性 针对父母代表子女倡导服务的能力的培训计划(称为 “志愿倡导计划-过渡”或VAP-T)，以改善有以下情况的青年的成年过渡 ASD.与等待名单控制组相比，父母参加VAP-T的年轻人更有可能是 在就业或接受高等教育方面，他们得到了更多的校本服务和成人服务。这个 拟议的项目以这一试点工作为基础，以四种重要方式：1)通过对VAP-T进行修改 满足于使其在全国范围内适用，并测试VAP-T在三种情况下是否有效 国家；2)将患有自闭症的子女的观点纳入干预和数据收集；3)通过 研究VAP-T影响青年成绩的机制；以及4)通过探索障碍来 参与程度和影响治疗反应的因素。我们假设参加VAP-T将 提高家长的倡导能力，带动更高的就业率、大专教育、社会教育 为患有自闭症的青少年提供参与和服务。我们将通过随机分配 患有自闭症的过渡年龄青年(16-26岁)的父母接受治疗或主动、仅使用材料的对照 团体，并跟踪家庭超过3年。我们提出了四个具体目标：(1)使用多点随机- 对照试验，检查VAP-T的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、离职后 中等教育、社会参与、服务获得)；(3)审查 父母倡导能力的哪些方面在VAP-T参与与青少年之间的关系中起中介作用 结果；和(4)探索治疗反应的调节因素和参与治疗的障碍 干预。通过严格测试一种新的干预措施，以改善患有自闭症的青年向成年的过渡， 拟议的研究针对2016-2007年跨机构自闭症确定的一个迫切需要的领域 协调委员会战略计划。该项目将产生一种新的干预措施，以改善 患有自闭症的青年可以通过州和地方机构在全国范围内传播。