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: 10151772
• 负责人: Jenna Eilenberg
• 金额: $ 3.43万
• 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 2024-02-28
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10151772
• 关键词: Adaptive Behaviors; Address; Adolescent and Young Adult; Adult; Age; Attention; Caregivers; Child; Clinical; Collaborations; Communities; Coupled; Detection; Development; Education; Employment; Enrollment; Ethnic Origin; Evaluation; Family; Family member; Foundations; Future; Goals; Health Services; Hispanics; Household; Income; Individual; Intervention; Interview; Knowledge; Life; Life Cycle Stages; Link; Living Arrangement; Longevity; Low income; Mediator of activation protein; Mental Health; Mentors; Methodology; Methods; Modeling; Occupations; Outcome; Parents; Phase; Poverty; Process; Qualitative Research; Race; Recommendation; Research; Research Methodology; Research Personnel; Research Training; Review Literature; Risk; Schools; Services; Shapes; Symptoms; Time; Training; Underserved Population; Unemployment; United States; United States National Institutes of Health; Work; Youth; adolescent with autism spectrum disorder; autism spectrum disorder; base; care systems; clinical application; communication behavior; community based research; critical developmental period; critical period; disparity reduction; environmental change; ethnic minority population; evidence base; expectation; experience; health disparity; high school; improved; individuals with autism spectrum disorder; longitudinal dataset; peer; racial and ethnic; service providers; skills; social; social communication; sociodemographic factors; sociodemographics; 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.”

项目总结/摘要 大约50万患有自闭症谱系障碍（ASD）的青少年将在未来几年内进入成年期。 十年过渡到成年期是一个脆弱的时间为青少年的自闭症谱系由于支离破碎的 护理系统与ASD相关的社会沟通和适应行为缺陷相结合。的青年 在高中毕业后与教育或就业脱节的人， 整个生命周期的结果，如贫困和心理健康问题。最近一次系统性的 文献回顾显示，低收入和种族/少数民族青年的自闭症谱系是 高中毕业后可能会因为他们的白色和高收入而与教育或就业脱节 同龄人由于向成年的过渡是建立成人功能轨迹的关键时期， 这表明，ASD的差异可能会在向成年过渡的过程中加剧，并使轨迹永久化。 少数民族或低收入自闭症青年在整个生命周期中的功能较差。 健康差异研究的概念框架提出了一个解决健康问题的三阶段模型 差异，包括发现差异，了解差异存在的原因，以及发展和 评估减少差距的干预措施。虽然研究人员已经开始记录 在ASD向成年过渡的过程中，迄今为止只有一项研究检查了社会人口统计学 更差的过渡相关结果的因素。下一步是更深入地了解 差距往往是采用混合的方法研究。在混合方法研究中，定性研究 将定量研究结果置于背景中，加深我们对差异背后的过程的理解。 因此，在本申请中，我提出了一个混合方法研究，以调查种族/民族的机制- 以及自闭症谱系青年在向成年过渡过程中基于收入的差异。 差异的机制将通过（1）定量检查介质的断开连接， 就业或高中毕业后的教育，（2）定性的障碍，有效过渡到 以及从不同青少年和青年人的角度消除这些障碍的想法 自闭症患者和他们的家人拟议的研究实施了基于社区的设计， 由主要利益相关者组成的社区咨询委员会将积极塑造研究的所有阶段。这 合作将提高调查结果的相关性和干预建议的可行性。 最终，这种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。 自闭症谱系中青少年和年轻人之间断开连接的差异，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患者进入成年期和成年期的需求”和“减少 为服务不足的人群提供的机会和成果。”