Adapting an advocacy services intervention for Latinx families of transition-aged youth with autism spectrum disorder

为患有自闭症谱系障碍的过渡年龄青少年的拉丁裔家庭调整宣传服务干预措施

• 批准号: 10590908
• 负责人: Meghan Burke
• 金额: $ 7.54万
• 依托单位: UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-20 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10590908
• 关键词: Address; Adolescence; Adult; Advocacy; Advocate; Age; Control Groups; Cultural Backgrounds; Data; Daughter; Discrimination; Educational Curriculum; Effectiveness; Employment; Ethnic Origin; Evaluation; Face; Failure; Family; Feedback; Focus Groups; Goals; Health; Health Priorities; Health Services Accessibility; Individual; Intervention; Interview; Knowledge; Language; Latin America; Latinx; Lead; Manuals; Measures; Mental Health Services; National Institute of Mental Health; Outcome; Outcome Measure; Parents; Participant; Persons; Population; Process; Randomized Controlled Trials; Records; Reporting; Risk; Sampling; Schools; Secondary Schools; Services; Site; Son; Strategic Planning; Surveys; Testing; Underserved Population; Youth; acceptability and feasibility; adolescent with autism spectrum disorder; aged; autism spectrum disorder; base; community living; disparity reduction; empowerment; experience; falls; feasibility testing; improved; interest; marginalized population; pilot test; programs; recruit; screening; service intervention; skills; treatment group

When youth with autism spectrum disorder (ASD) transition from school to adult services, they fall off a “service cliff.” To increase access to services, Drs. Burke (PI) and Taylor (Consultant) developed the ASSIST program, which teaches parents how to advocate for adult services on behalf of their youth with ASD. In a pilot randomized controlled trial (RCT: R34 MH104428), treatment group (versus control) participants demonstrated significantly improved knowledge of adult services, advocacy, and empowerment. Sons/daughters of treatment group participants had increased access to services. For advocacy services interventions like ASSIST to be equitable, they need to reach families who are at greatest risk for service disparities. Latinx youth with ASD are one such underserved population. Relative to White youth, Latinx youth with ASD receive significantly fewer post-secondary education, health, and employment services and face worse post-school outcomes. In addition to the barriers which hinder service access for all families, Latinx families face unique barriers to service access (e.g., language, cultural differences, citizenship, discrimination) making them a marginalized population. In this project, we are adapting the ASSIST curriculum and related measures for Latinx parents of transition-aged youth with ASD. Specifically, we will leverage ASSIST data and data from Latinx, non-ASSIST parents to inform adaptations to the ASSIST curriculum. We will also conduct pre-testing and a cross-cultural adaptation process to revise the ASSIST measures for Latinx families. We will test the adapted ASSIST curriculum with a randomized controlled trial to determine its feasibility, acceptability and efficacy on intervention targets (knowledge, advocacy, and empowerment) and outcome of interest (service access). This project is aligned with NIMH priorities by examining services from adolescence to adulthood (PA-21-199) and by adapting a program to improve mental health services for underserved populations NIMH 2020 Strategic plan). It is also responsive to the Interagency Autism Coordinating Committee core value of “equity” in reducing disparities with respect to cultural backgrounds. Further, if successful, it will be the first intervention to directly address service disparities for Latinx families of youth with ASD who are transitioning to adulthood.

当患有自闭症谱系障碍（ASD）的年轻人从学校过渡到成人服务时，他们会从一个 “服务悬崖”为了增加获得服务的机会，Burke博士（PI）和Taylor博士（顾问）开发了ASSIST 该计划教导父母如何代表ASD青少年倡导成人服务。以试点 随机对照试验（RCT：R34 MH 104428），治疗组（与对照组）受试者证明 大大提高了对成人服务、宣传和赋权的认识。治疗的儿子/女儿 团体参与者获得服务的机会增加。对于像ASSIST这样的宣传服务干预措施， 为了公平起见，它们需要覆盖最有可能出现服务差距的家庭。患有ASD的拉丁裔青年 一个这样的弱势群体。相对于白色青年，患有ASD的拉丁裔青年接受的治疗明显较少 中学后教育、卫生和就业服务，面临更差的毕业后结果。此外 除了阻碍所有家庭获得服务的障碍外，拉丁裔家庭还面临着独特的服务障碍 访问（例如，语言、文化差异、公民身份、歧视）使他们成为边缘化群体， 人口在这个项目中，我们正在调整ASSIST课程和相关措施， 患有自闭症的过渡期青年具体来说，我们将利用ASSIST数据和来自Latinx、非ASSIST 家长告知适应ASSIST课程。我们还将进行预测试和跨文化 修改拉丁裔家庭援助措施的适应进程。我们将测试经过调整的ASSIST 随机对照试验，以确定其可行性，可接受性和有效性， 干预目标（知识、宣传和赋权）和利益结果（服务获取）。这 通过检查从青少年到成年的服务（PA-21-199），该项目与NIMH的优先事项保持一致， 通过调整一项计划，为服务不足的人群改善心理健康服务NIMH 2020战略 计划）。这也是对机构间自闭症协调委员会核心价值观“公平”的回应， 文化背景的差异。此外，如果成功，这将是第一次直接干预 解决患有ASD的青少年的拉丁裔家庭向成年过渡的服务差异。