关键词: adolescent autistic disorder research priorities transition to adult care vulnerable populations well being young adult

Mesh : Adolescent Young Adult Humans Autistic Disorder / therapy Ecosystem Autism Spectrum Disorder / therapy

来  源:   DOI:10.1002/aur.2890

Abstract:
Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.
摘要:
很少有资金来源明确支持全系统研究,以确定改善获取的机制,服务交付,自闭症过渡年龄青年和年轻人的结果和福祉。我们旨在整合通过五年联邦自闭症过渡研究项目(ATRP)合作协议产生的研究结果。这项最高的审查旨在:(1)绘制该联邦奖项产生的科学证据,(2)确定剩余的证据差距,以告知未来的自闭症过渡服务研究。我们使用范围审查方法评估了31项ATRP资助的已发表科学研究。我们绘制了研究特点,局部域,变量的社会生态水平,注重公平,并纳入自闭症参与者。我们评估了这些主题是如何在研究中解决的,以确定证据基础中的持续差距。与以前发表的评论和研究议程相比,我们发现研究参与者的表征有所改善,更广泛的社会生态相关性研究,以及多个结果域的检查。然而,我们还发现自闭症研究参与者的持续不足,使用多部门数据,和注重公平的研究。我们建议的自闭症过渡服务研究的优先事项,以促进健康的生活成果和福祉包括:继续分析人口水平的数据和改进的数据基础设施;开发针对边缘化群体的服务提供方法和干预措施;扩大研究范围,以改善与自闭症青年相关的复杂服务生态系统的绩效和协调;并加强自闭症研究参与者的作用。
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