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: 8914673
• 负责人: Julie Lounds Taylor
• 金额: $ 7.14万
• 依托单位: VANDERBILT UNIVERSITY
• 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 2016-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8914673
• 关键词: Address; Adopted; Adult; Advocacy; Advocate; Applications Grants; Autistic Disorder; Award; Behavioral; Consult; Control Groups; Data; Daughter; Development; Education; Educational Curriculum; Educational process of instructing; Eligibility Determination; Employment; Ethnic Origin; Family; Family member; Feedback; Funding Mechanisms; Health; Health Services Accessibility; High Prevalence; Household; Intellectual functioning disability; Internet; Intervention; Intervention Studies; Knowledge; Lead; Left; Life; Locales; Manuals; Measures; Mother-Child Relations; Outcome; Parents; Persons; Phenotype; Prevalence; Race; Randomized; Randomized Controlled Trials; Relative (related person); Research; Research Design; Resources; Scheme; School Health Services; Schools; Services; Site; Son; Structure; Symptoms; System; Testing; Time; Training; Training Programs; Waiting Lists; Youth; aged; autism spectrum disorder; base; design; disability; efficacy testing; empowerment; evidence base; expectation; high school; improved; meetings; offspring; post intervention; primary outcome; programs; randomized trial; secondary outcome; skills; social; social skills; symposium; treatment response; volunteer; young adult

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倡导培训计划（志愿者倡导项目，或VAP），以满足正在向成年过渡的自闭症谱系障碍（ASD）青少年家庭的需求。在随机分配的等待名单对照设计中，我们进行了6个月和12个月的随访，然后调查了修订后的志愿者倡导项目过渡（或VAP-T）的有效性。尽管患有自闭症的年轻成年人的预后不佳，而且一般无法获得成人服务，但很少有以过渡为重点的干预措施能够帮助这些年轻人及其家庭。此外，大多数现有的方法要么训练这些年轻人的社会或其他技能，要么努力增加一个州或地方的成人残疾服务库存。在拟议的研究中，我们采用了一种互补的方法，调整和试点测试一种干预措施，以提高父母在成年过渡期间倡导患有ASD的儿子或女儿的技能。我们提出了四个具体目标：(1)调整VAP以满足过渡性自闭症青少年的需求，测试适应性干预（vapt）和研究设计的可行性和可接受性，以及vapt的保真度；(2)进行初步测试，以确定参与vapt是否与父母为子女辩护的能力、接受服务的能力和青少年ASD预后的改善有关；（三）对治疗反应调节因子进行初步审查；(4)根据建议的研究结果制作一份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，广泛咨询咨询委员会，该委员会由自闭症青少年的家庭、青少年自己、自闭症专家和成年过渡期专家以及自闭症和成人残疾服务组织组成。然后，我们将对一组患有自闭症的年轻成年人的父母进行干预，并利用他们的反馈进行进一步的修订。在该奖项的第二年和第三年，我们将进行一项小型随机对照试验，收集等候名单对照组