Berg Kristen A, Ishler Karen J, Lytle Sarah, Kaplan Ronna, Wang Fei, Olgac Tugba, Miner Stacy, Edguer Marjorie N, Biegel David E
Jack, Joseph and Morton Mandel School of Applied Social Sciences, Case Western Reserve University, 10900 Euclid Ave, Cleveland, OH 44106, USA.
Center for Health Care Research and Policy, The MetroHealth System, 2500 MetroHealth Dr, Cleveland, OH 44109, USA.
Autism Res Treat. 2023 Mar 21;2023:6597554. doi: 10.1155/2023/6597554. eCollection 2023.
Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood.
每年约有5万名患有自闭症谱系障碍（ASD）的青少年从美国高中毕业，进入成人护理系统，其中许多人在日常生活照料和服务系统指引方面仍依赖家庭。作为一项更大规模研究的一部分，174名患有ASD的青少年或青年的家庭照料者被问及他们会就如何改善针对患有ASD的青少年的服务向服务提供者提供什么建议。反思性主题分析确定了一个包含五项指令的框架：（1）提供服务路线图；（2）改善服务获取；（3）填补空白以满足未满足的需求；（4）让自己、家人和社会了解自闭症；（5）以与家庭建立关系的模式开展工作。教育、健康和社会服务提供者以及政策制定者可以利用这些指令，更好地帮助患有ASD的青少年及其家庭向成年过渡。
