Adapting a Parent Advocacy Program to Improve Transition for Youth With Autism

调整家长倡导计划以改善自闭症青少年的过渡

• 批准号: 9130044
• 负责人: Julie Lounds Taylor
• 金额: $ 16.52万
• 依托单位: VANDERBILT UNIVERSITY MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-08-20 至 2017-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9130044
• 关键词: Adapting; Parent; Advocacy; Program; Improve

DESCRIPTION (provided by applicant): In the proposed research, we first adapt an existing parent advocacy training program (the Volunteer Advocacy Project, or VAP) to meet the needs of families of youth with autism spectrum disorders (ASD) who are transitioning to adulthood. In a randomly assigned, wait-list control design with 6- and 12-month follow-ups, we then investigate the efficacy of this revised Volunteer Advocacy Project-Transition (or VAP-T). Despite poor outcomes for young adults with ASD and the general inaccessibility of adult services, few transition-focused interventions to assist these young adults and their families are evidence-based. Moreover, most existing approaches either train these youth in social or other skills or endeavor to increase a state or locality's stock of adult disability services. In the proposed research, we adopt a complementary approach, adapting and pilot testing an intervention to increase parents' skills in advocating for their son or daughter with ASD during the transition to adulthood. We propose four Specific Aims: (1) To adapt the VAP to address the needs of transitioning youth with ASD, to test the feasibility and acceptability of the adapted intervention (VAP-T) and of the research design, as well as the fidelity of the VAP-T; (2) To conduct preliminary tests to determine whether participation in the VAP-T is associated with improvements in parents' ability to advocate for their offspring, in service receipt, and in outcomes of the youth with ASD; (3) To conduct preliminary examination of moderators of treatment response; and (4) To produce a VAP-T manual based on results from the proposed research. To investigate these Aims, during Year 1 we will adapt the VAP into the VAP-T, consulting extensively with an Advisory Board comprised of families of youth with ASD, youth themselves, experts in ASD and in the transition to adulthood, and autism and adult-disability service organizations. We will then deliver the intervention to a trial group of parents of young adults with ASD, and use their feedback for further revisions. During Years 2 and 3 of the award, we will conduct a small randomized-controlled trial with a wait-list control group to gather data on feasibility, acceptability, and fidelity of the intervention and of the research design. We will collect data on our primary outcomes of advocacy knowledge, skills, and comfort, as well as on service use and outcomes of the youth with ASD at 6-months and 12-months post-intervention. With this pilot data, we will conduct initial tests of efficacy, as well as gather preliminary data to aid in proposing a larger randomized- controlled trial of the VAP-T, to be delivered at multiple sites. Given the high prevalence of ASD, the preponderance of poor outcomes for adults with ASD, and the remarkable variability in the availability of adult services, developing and testing an intervention that is applicable across the array of adult support landscapes is of critical concern and highly significant, with potential for marked impact on intervention and practice.

描述（由申请人提供）：在拟议的研究中，我们首先调整现有的家长宣传培训计划（志愿者宣传项目，或VAP），以满足自闭症谱系障碍（ASD）青少年家庭的需求。在一个随机分配的，等待名单控制设计与6个月和12个月的随访，我们然后调查这个修订后的志愿者宣传项目过渡（或VAP-T）的有效性。尽管患有ASD的年轻人的结果不佳，并且成人服务普遍难以获得，但很少有以过渡为重点的干预措施来帮助这些年轻人及其家庭。此外，大多数现有的方法要么培训这些年轻人的社会或其他技能，要么奋进增加州或地方的成人残疾服务存量。在拟议的研究中，我们采取了一种补充方法，调整和试点测试干预措施，以提高父母在向成年过渡期间为ASD的儿子或女儿辩护的技能。我们提出四个具体目标：（1）调整VAP以满足患有ASD的过渡期青年的需求，以测试适应性干预（VAP-T）和研究设计的可行性和可接受性，以及VAP-T的保真度;（2）进行初步测试，以确定参与VAP-T是否与父母在服务接受方面为其子女辩护的能力的提高有关，（3）对治疗反应的调节因素进行初步研究;（4）根据拟议研究的结果编制VAP-T手册。为了研究这些目标，在第一年，我们将把VAP调整为VAP-T，与由ASD青少年家庭、青少年自己、ASD专家和向成年过渡的专家以及自闭症和成人残疾服务组织组成的咨询委员会进行广泛咨询。然后，我们将把干预措施提供给一个由ASD年轻人的父母组成的试验组，并利用他们的反馈进行进一步的修改。在该奖项的第2年和第3年，我们将进行一项小型随机对照试验，其中有一个等待名单对照组， 关于干预和研究设计的可行性、可接受性和保真度的数据。我们 我们将收集关于我们的宣传知识，技能和舒适度的主要结果，以及关于ASD青少年在干预后6个月和12个月的服务使用和结果的数据。有了这些试点数据，我们将进行初步的疗效测试，并收集初步数据，以帮助提出一个更大的VAP-T随机对照试验，在多个地点交付。鉴于ASD的高患病率，ASD成年人预后不良的优势，以及成人服务可用性的显著差异， 制定和测试一项适用于各种成人支助环境的干预措施是一个关键问题，意义重大，有可能对干预措施和做法产生显著影响。