A Mixed Methods Examination of Mechanisms Underlying Sociodemographic Disparities Over the Transition to Adulthood Among Youth on the Autism Spectrum

自闭症谱系青少年向成年过渡过程中社会人口统计学差异背后机制的混合方法检验

• 批准号: 10609052
• 负责人: Jenna Eilenberg
• 金额: $ 3.95万
• 依托单位: BOSTON UNIVERSITY (CHARLES RIVER CAMPUS)
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-03-01 至 2025-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10609052
• 关键词: Adaptive Behaviors; Address; Adolescent and Young Adult; Adult; Age; Attention; Black race; Caregivers; Child; Clinical; Collaborations; Communities; Coupled; Decision Making; Detection; Development; Disparity; Education; Employment; Enrollment; Ethnic Origin; Evaluation; Family; Family member; Foundations; Future; Goals; Health Disparities Research; Health Services; Hispanic; Household; Income; Individual; Intervention; Interview; Knowledge; Life; Life Cycle Stages; Link; Living Arrangement; Longevity; Low income; Mediator; Mental Health; Mentors; Methodology; Methods; Modeling; Occupations; Outcome; Parents; Persons; Phase; Poverty; Process; Qualitative Research; Race; Recommendation; Research; Research Methodology; Research Personnel; Research Training; Review Literature; Risk; Schools; Secondary Schools; Services; Shapes; Symptoms; Time; Training; Underserved Population; Unemployment; United States; United States National Institutes of Health; Vocation; Work; Youth; access disparities; adolescent with autism spectrum disorder; autism spectrum disorder; care systems; clinical application; communication behavior; community based research; critical developmental period; critical period; disparity reduction; environmental change; ethnic minority; evidence base; expectation; experience; graduate school; health disparity; high school; improved; individuals with autism spectrum disorder; longitudinal dataset; minority children; peer; racial minority; service providers; skills; social; social communication; sociodemographic disparity; sociodemographic factors; teacher; therapy development

PROJECT SUMMARY/ABSTRACT Approximately 500,000 youth with autism spectrum disorder (ASD) will age into adulthood over the next decade. Transition to adulthood is a vulnerable time for youth on the autism spectrum due to fragmented systems of care coupled with ASD-related deficits in social communication and adaptive behavior. Youth who are disconnected from education or employment after high school graduation are at increased risk for poorer outcomes across the lifespan, such as poverty and mental health problems. Results from a recent systematic literature review revealed that low-income and racial/ethnic minority youth on the autism spectrum are twice as likely to be disconnected from education or employment after high school as their White and higher-income peers. As transition to adulthood is a critical period for setting up trajectories of adult functioning, this finding suggests that ASD disparities are likely to intensify over the transition to adulthood and perpetuate trajectories of poorer functioning across the lifespan for racial/ethnic minority or low-income youth on the autism spectrum. Conceptual frameworks for health disparities research suggest a three-phase model for addressing health disparities that includes detection of disparities, understanding why disparities exist, and development and evaluation of interventions to reduce disparities. While researchers have begun to document disparities over transition to adulthood in ASD, only one study to date has examined mechanisms linking sociodemographic factors to poorer transition-related outcomes. A next step toward a deeper understanding of mechanisms of disparities is often to employ mixed methods research. In mixed methods studies, qualitative research serves to contextualize quantitative findings and deepen our understanding of the processes underlying disparities. Accordingly, in this application, I propose a mixed methods study to investigate mechanisms of race/ethnicity- and income-based disparities over the transition to adulthood among youth on the autism spectrum. Mechanisms of disparities will be explored by (1) quantitatively examining mediators of disconnection from employment or education after high school, and (2) qualitatively characterizing barriers to effective transition to adulthood and ideas to ameliorate those barriers from the perspective of diverse adolescents and young adults on the autism spectrum and their families. The proposed research implements a community-based design in which a community advisory board of key stakeholders will actively shape all stages of the research. This collaboration will increase the relevance of findings and the feasibility of intervention recommendations. Ultimately, the results from this mixed methods study will inform the processes underlying sociodemographic disparities in disconnection among adolescents and young adults on the autism spectrum and inform future clinical applications. This proposal closely aligns with NIH Interagency Autism Coordinating Committee’s goal to “meet the needs of people with ASD as they progress into and through adulthood” and “reduce disparities in access and in outcomes for underserved populations.”

项目摘要/摘要 大约有500,000名自闭症谱系障碍（ASD）的年轻人将在下一个成年 十年。过渡到成年是由于分散的自闭症谱系年轻人的脆弱时期 护理系统以及社会交流和适应性行为中与ASD相关的缺陷。青年谁 高中毕业后与教育或就业断开连接，较差的风险增加 整个生命周期的结果，例如贫困和心理健康问题。来自最近系统的结果 文学评论显示，自闭症谱系中的低收入和种族/种族少数青年是两倍 高中毕业后，可能与他们的白人和高收入分离，可能与教育或就业脱节 同龄人。由于过渡到成年是建立成人功能轨迹的关键时期，这一发现 表明ASD差异可能会在过渡到成年和轨迹上加剧 自闭症谱系中种族/族裔少数族裔或低收入年轻人的寿命较差。 健康差异研究的概念框架研究提出了解决健康的三相模型 包括检测分布，理解为什么存在分布以及开发的差异以及 评估干预措施以减少分布。研究人员已经开始记录分布 在ASD中过渡到成年，迄今为止只有一项研究检查了与社会人口统计学联系的机制 与过渡相关结果较差的因素。下一步迈向对机制的更深入了解 差异通常是采用混合方法研究。在混合方法研究中，定性研究服务 为了使定量发现并加深我们对分布基本过程的理解。 根据此应用，我提出了一项混合方法研究，以研究种族/种族的机制 - 自闭症谱系中青年人的成年期过渡的基于收入的差异。 （1）定量检查与断开的调解人与差异的机制将探索 高中毕业后的就业或教育，以及（2）定性地表征有效过渡到的障碍 成年和想法从潜水者和年轻人的角度改善这些障碍 在自闭症谱系及其家人上。拟议的研究实施了基于社区的设计 关键利益相关者社区顾问委员会将积极塑造研究的所有阶段。这 协作将增加发现的相关性和干预建议的可行性。 最终，这项混合方法研究的结果将为社会人口统计学基础的过程提供信息 青少年和年轻人在自闭症谱系上断开连接的差异并为未来提供信息 临床应用。该提案与NIH机构间自闭症协调委员会的目标密切一致 “满足ASD的人的需求，因为他们在成年期和成年后的发展”和“减少分布 访问和服务不足人群的结果。”