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: 10359069
• 负责人: Jenna Eilenberg
• 金额: $ 3.83万
• 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 2024-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10359069
• 关键词: Adaptive Behaviors; Address; Adolescent and Young Adult; Adult; Age; Attention; Black race; Caregivers; Child; Clinical; Collaborations; Communities; Coupled; Detection; Development; 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 of activation protein; 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; 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; evidence base; expectation; experience; health disparity; high school; improved; individuals with autism spectrum disorder; longitudinal dataset; minority children; peer; racial and ethnic; 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.”

项目概要/摘要 大约 500,000 名患有自闭症谱系障碍 (ASD) 的青少年将在未来进入成年期 十年。对于自闭症谱系青年来说，向成年过渡是一个脆弱的时期，因为他们的碎片化 护理系统加上与自闭症谱系障碍相关的社交沟通和适应行为缺陷。青春谁 高中毕业后与教育或就业脱节 对于较贫困的人来说，面临更大的风险 整个生命周期的结果，例如贫困和心理健康问题。最近系统性的结果 文献综述显示，低收入和少数族裔/自闭症谱系青年的患病率是自闭症谱系青年的两倍 高中毕业后可能会因为白人和高收入群体而脱离教育或就业 同行。由于向成年期的过渡是建立成人功能轨迹的关键时期，这一发现 表明自闭症谱系障碍的差异可能会随着成年期的过渡而加剧，并持续下去 少数种族/族裔或自闭症谱系低收入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解决健康问题的三阶段模型 差异，包括发现差异、理解差异存在的原因以及发展和 评估减少差异的干预措施。虽然研究人员已经开始记录不同方面的差异 自闭症谱系障碍 (ASD) 向成年期的过渡，迄今为止只有一项研究探讨了与社会人口统计学相关的机制 导致较差转型相关结果的因素。进一步了解机制的下一步 差异性往往采用混合方法进行研究。在混合方法研究中，定性研究服务于 将定量研究结果置于情境中并加深我们对差异背后过程的理解。 因此，在本申请中，我提出了一项混合方法研究来研究种族/民族的机制- 自闭症谱系青年在向成年过渡过程中基于收入的差异。 将通过以下方式探索差异的机制：（1）定量研究与脱节的中介因素 高中毕业后就业或教育，以及 (2) 定性地描述有效过渡到的障碍 从不同青少年和年轻人的角度来看，成年期以及改善这些障碍的想法 关于自闭症谱系及其家庭。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影响研究的各个阶段。这 合作将提高研究结果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的潜在过程提供信息 自闭症谱系青少年和年轻人之间的脱节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紧密一致 “满足自闭症谱系障碍患者进入成年后的需求”和“减少 服务不足人群的获取和结果。”