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“真希望这个工具能早点提供给我”:为自闭症青少年和青年试行职场自闭症披露决策辅助工具

"I Wish This Tool Was Available to Me Sooner": Piloting a Workplace Autism Disclosure Decision-Aid Tool for Autistic Youth and Young Adults.

作者信息

Tomas Vanessa, Kingsnorth Shauna, Anagnostou Evdokia, Kirsh Bonnie, Lindsay Sally

机构信息

Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada.

Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada.

出版信息

Autism Adulthood. 2024 Sep 16;6(3):331-344. doi: 10.1089/aut.2023.0054. eCollection 2024 Sep.

Abstract

BACKGROUND

For autistic youth and young adults, deciding whether to disclose their autism at work may be complex since they are newly entering the workforce and are at an impressionable developmental period. Decision-aid tools can help someone make a choice regarding a topic/situation. We developed a workplace autism disclosure decision-aid tool called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up, and REveal?) to support autistic youth and young adults navigate disclosure decision-making. In this study, we aimed to assess the DISCLOSURE tool's (1) impact on decision-making and self-determination capabilities and (2) usability, feasibility, and acceptability.

METHODS

This was a single-arm pre-post pilot study. The DISCLOSURE tool comprises three interactive PDF documents and videos. Thirty participants (mean age of 23.5 years) completed online surveys before and after interacting with the DISCLOSURE tool. We used descriptive statistics for usability, feasibility, and acceptability. We calculated the Wilcoxon signed rank and paired -tests to determine pre-post changes in decision-making and self-determination capabilities (Decisional Conflict Scale-Low Literacy Version [DCS-LL]; adapted Arc's Self-Determination Scale). We analyzed open-ended data using conventional (inductive) content analysis.

RESULTS

There were significant decreases in DCS-LL total and subscale scores ( < 0.0001) and a significant increase in Arc's total score ( = 0.01), suggesting important improvements. There were no significant increases for Arc's psychological empowerment and self-realization subscales ( = 0.05;  = 0.09). Median scores (4.0/5.0) indicate that participants agreed that the DISCLOSURE tool is acceptable, feasible, and meets the usability criteria. We developed four categories to describe the open-ended data: (1) disclosure capabilities, (2) the role of others, (3) positive tool impact and feedback, and (4) minimal tool impact and constructive feedback.

DISCUSSION

Findings are suggestive of the DISCLOSURE tool's ability to support workplace autism disclosure decision-making. Future studies should ascertain the DISCLOSURE tool's effectiveness, explore others' feedback (e.g., employers), and how to incorporate the tool into relevant employment and vocational programs.

摘要

背景

对于患有自闭症的青少年和年轻人来说,决定是否在工作中披露自己的自闭症可能很复杂,因为他们刚进入职场,正处于易受影响的发育阶段。决策辅助工具可以帮助人们就某个主题/情况做出选择。我们开发了一种名为“披露”(我是否开始对话并透露、大声说出来并揭示?)的职场自闭症披露决策辅助工具,以支持患有自闭症的青少年和年轻人应对披露决策。在本研究中,我们旨在评估“披露”工具的(1)对决策和自我决定能力的影响,以及(2)可用性、可行性和可接受性。

方法

这是一项单臂前后试点研究。“披露”工具包括三个交互式PDF文档和视频。30名参与者(平均年龄23.5岁)在与“披露”工具互动前后完成了在线调查。我们使用描述性统计来评估可用性、可行性和可接受性。我们计算了Wilcoxon符号秩和配对检验,以确定决策和自我决定能力的前后变化(决策冲突量表低识字版本[DCS-LL];改编的阿恩自我决定量表)。我们使用传统(归纳)内容分析法分析开放式数据。

结果

DCS-LL总分和子量表得分显著下降(<0.0001),阿恩总分显著增加(=0.01),表明有重要改善。阿恩的心理赋权和自我实现子量表没有显著增加(=0.05;=0.09)。中位数得分(4.0/5.0)表明参与者同意“披露”工具是可接受的、可行的,并且符合可用性标准。我们开发了四个类别来描述开放式数据:(1)披露能力,(2)他人的作用,(3)工具的积极影响和反馈,以及(4)工具的最小影响和建设性反馈。

讨论

研究结果表明“披露”工具能够支持职场自闭症披露决策。未来的研究应该确定“披露”工具的有效性,探索他人的反馈(如雇主),以及如何将该工具纳入相关的就业和职业项目。

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