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提高家长为自闭症青少年争取服务的能力:一项随机临床试验。

Improving parents' ability to advocate for services for youth with autism: A randomized clinical trial.

机构信息

Department of Pediatrics and Vanderbilt Kennedy Center, Vanderbilt University Medical Center, Nashville, Tennessee, USA.

Waisman Center, University of Wisconsin-Madison, Madison, Wisconsin, USA.

出版信息

Autism Res. 2023 Oct;16(10):1976-1988. doi: 10.1002/aur.3001. Epub 2023 Aug 8.

Abstract

Youth with autism face challenges accessing services as they transition to adulthood. Improving parents' ability to advocate for services on behalf of their youth may be an effective way to improve service access and ultimately transition outcomes in this group. In this study, we tested whether participating in an advocacy intervention improved parents' ability to advocate for services for their transition-aged youth with autism. One hundred and eighty-five parents of youth with autism ages 16-26, recruited across three states in the U.S., were randomized to one of two experimental conditions. The treatment condition received the ASSIST program, a 12-week (24-h) group-based intervention. The control condition received the same written materials as the treatment condition. Primary outcomes for this report-parent advocacy ability-were collected at baseline (prior to randomization) and post-test (immediately after the treatment group finished the 12-week program) by survey. After taking ASSIST, the treatment condition had greater gains than controls in knowledge of adult services (B = -1.62, CI = -2.33 to -0.90) and perceived advocacy skills (B = -0.19, CI = -0.33 to -0.04). Participants who had less knowledge, lower perceived advocacy skills, and less active coping styles at baseline had the greatest treatment gains. Findings suggest that ASSIST is effective in improving parent advocacy ability and may be most beneficial for parents who experience greater challenges advocating for their son/daughter with autism. Future research will examine whether gains in parent advocacy ability leads to improvements in service access and post-school outcomes for transition-age youth with autism.

摘要

自闭症青少年在向成年过渡时面临获取服务的挑战。提高父母代表其青少年倡导服务的能力可能是改善该群体服务获取并最终过渡结果的有效途径。在这项研究中,我们测试了参与倡导干预是否能提高父母为其自闭症青少年过渡时期倡导服务的能力。185 名年龄在 16-26 岁的自闭症青少年的父母,在美国三个州招募,随机分配到两个实验组中的一个。实验组接受 ASSIST 项目,这是一个为期 12 周(24 小时)的小组为基础的干预。对照组接受与实验组相同的书面材料。本报告的主要结果——父母倡导能力——在基线(随机分组前)和后测(治疗组完成 12 周计划后立即)通过调查收集。接受 ASSIST 后,实验组在成人服务知识(B = -1.62,CI = -2.33 至 -0.90)和感知倡导技能(B = -0.19,CI = -0.33 至 -0.04)方面的得分比对照组有更大的提高。在基线时知识较少、感知倡导技能较低、积极应对方式较少的参与者获得的治疗效果最大。研究结果表明,ASSIST 有效提高了父母的倡导能力,对于那些在为自闭症子女倡导方面面临更大挑战的父母可能最有益。未来的研究将检验父母倡导能力的提高是否会导致自闭症青少年过渡时期服务获取和毕业后结果的改善。

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