Data_Sheet_1_The co-construction of a reading assessment measure with adults with Down syndrome: a meaningful literacy approach.docx

IntroductionThe need to develop appropriate measures of broad-based reading-related literacy skills for adults with Down syndrome has been highlighted in the literature. In this study we aimed to co-construct a valid and reliable assessment measure that can be used to document meaningful everyday reading, in adolescents and adults with Down syndrome.MethodsThe study was carried out in two stages. Stage 1 used an inclusive participatory design in which individuals with Down syndrome were research collaborators (n = 46). Items to be included in the measure were identified and ecological, face and content validity were established through an iterative process. In stage 2 we examined the reliability of the tool and explored potential relationships between meaningful reading score and (1) age, (2) receptive vocabulary, and (3) reading ability as measured by standardized assessments. In addition, we profiled what a pilot cohort of adults with Down syndrome read (n = 33) and how they experience reading in their everyday lives.ResultsResults showed that 46 items were generated for inclusion in the Meaningful Reading Measure (MRM). Our preliminary data showed that the tool has internal and external reliability and ecological and content validity. There were no associations between meaningful reading score and any of the other variables examined. There was considerable variability in items read (range 12–44) which reflected a broad range of reading practices. Adults with Down syndrome identified the importance of reading as a pleasurable activity and as something that aids learning.Conclusion:The MRM developed here can be used (1) as a reading intervention outcome measure to complement existing standardized tools, (2) to profile meaningful reading in adults with Down syndrome, (3) to guide reading module content, and (4) to capture change in adults’ perceptions of themselves as readers. Future work is needed to establish the tool’s sensitivity to change over time.

引言：文献中已强调，对于唐氏综合症成人而言，开发广泛的阅读相关素养技能的适宜度量标准的重要性。本研究旨在共同构建一个有效且可靠的评估工具，用于记录青少年和成人唐氏综合症患者的有意义阅读活动。方法：本研究分为两个阶段进行。第一阶段采用包容性参与式设计，其中唐氏综合症患者作为研究合作者（n=46）。通过迭代过程确定了应纳入评估工具的项目，并建立了生态学、面对和内容效度。在第二阶段，我们检验了工具的可靠性，并探讨了有意义阅读分数与（1）年龄，（2）接受性词汇量，（3）通过标准化评估测量的阅读能力之间的潜在关系。此外，我们还对唐氏综合症成人试点队列的阅读内容（n=33）以及他们在日常生活中阅读体验进行了分析。结果：结果显示，为有意义阅读度量表（MRM）生成了46个项目。我们的初步数据表明，该工具具有内部和外部可靠性以及生态学效度和内容效度。有意义阅读分数与所考察的其他变量之间没有关联。阅读项目的变异性较大（范围12-44），反映了广泛的阅读实践。唐氏综合症患者认为阅读作为一种愉悦的活动以及有助于学习的手段具有重要意义。结论：此处开发的MRM可用于（1）作为阅读干预结果测度，以补充现有标准化工具，（2）描绘唐氏综合症成人的有意义阅读，（3）指导阅读模块内容，（4）捕捉成人对自己作为读者的认知变化。未来研究需要建立该工具随时间变化的敏感性。