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: 10707208
• 负责人: Meghan Burke
• 金额: $ 7.53万
• 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/10707208
• 关键词: Address; Adolescence; Adult; Advocacy; Advocate; Age; Control Groups; Cultural Backgrounds; Data; Daughter; Discrimination; Disparity; Educational Curriculum; Educational process of instructing; Effectiveness; Employment; Equity; Ethnic Origin; Evaluation; Face; Failure; Family; Feedback; Focus Groups; Goals; Health; Health Priorities; Health Services Accessibility; Individual; Intervention; Interview; Knowledge; Language; Latin America; Latinx; 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; 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) 的青少年从学校过渡到成人服务机构时，他们会陷入困境 “服务悬崖。”为了增加获得服务的机会，博士。 Burke（PI）和 Taylor（顾问）开发了 ASSIST 计划，该计划教导父母如何代表患有自闭症谱系障碍的青少年倡导成人服务。在飞行员中 随机对照试验（RCT：R34 MH104428），治疗组（与对照组）参与者证明 显着提高了对成人服务、宣传和赋权的了解。治疗的儿子/女儿 小组参与者获得服务的机会有所增加。对于像 ASSIST 这样的宣传服务干预措施 公平地说，他们需要覆盖服务差异风险最大的家庭。患有 ASD 的拉丁裔青少年是 就是这样一个服务不足的人群。与白人青少年相比，患有自闭症谱系障碍的拉丁裔青少年接受的教育要少得多 高等教育、卫生和就业服务，并面临更差的毕业后结果。此外 由于阻碍所有家庭获得服务的障碍，拉丁裔家庭面临着独特的服务障碍 机会（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，我们正在为拉丁裔家长调整 ASSIST 课程和相关措施 患有自闭症谱系障碍 (ASD) 的过渡年龄青少年。具体来说，我们将利用 ASSIST 数据和来自拉丁裔、非 ASSIST 的数据 家长告知对 ASSIST 课程的调整。我们还将进行预测试和跨文化 修改针对拉丁裔家庭的 ASSIST 措施的适应过程。我们将测试改编后的 ASSIST 课程进行随机对照试验，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 该项目通过检查从青春期到成年的服务（PA-21-199）与 NIMH 的优先事项保持一致 通过调整计划来改善服务不足人群的心理健康服务 NIMH 2020 战略 计划）。它还响应机构间自闭症协调委员会“公平”的核心价值观，减少 文化背景方面的差异。此外，如果成功，这将是第一次直接干预 解决正在向成年过渡的患有自闭症谱系障碍青少年的拉丁裔家庭的服务差异。