Frizelle Pauline, O'Donovan Sean, Jolley Mary, Martin Lisa, Hart Nicola
Department of Speech and Hearing Sciences, University College Cork, Cork, Ireland.
Down Syndrome Ireland, Dublin, Ireland.
Front Psychol. 2023 Jul 20;14:1173300. doi: 10.3389/fpsyg.2023.1173300. eCollection 2023.
The 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.
The study was carried out in two stages. Stage 1 used an inclusive participatory design in which individuals with Down syndrome were research collaborators ( = 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 ( = 33) and how they experience reading in their everyday lives.
Results 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.
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.
文献中强调了为唐氏综合征成年人开发与广泛阅读相关的识字技能的适当测量方法的必要性。在本研究中，我们旨在共同构建一种有效且可靠的评估方法，用于记录唐氏综合征青少年和成年人有意义的日常阅读情况。
该研究分两个阶段进行。第一阶段采用包容性参与式设计，唐氏综合征患者作为研究合作者（n = 46）。确定了该测量方法中要包含的项目，并通过迭代过程建立了生态效度、表面效度和内容效度。在第二阶段，我们检验了该工具的信度，并探讨了有意义阅读分数与（1）年龄、（2）接受性词汇以及（3）通过标准化评估测量的阅读能力之间的潜在关系。此外，我们描述了一组唐氏综合征成年人（n = 33）阅读的内容以及他们在日常生活中的阅读体验。
结果表明，共生成了46个项目纳入有意义阅读测量方法（MRM）。我们的初步数据表明，该工具具有内部和外部信度以及生态效度和内容效度。有意义阅读分数与所考察的任何其他变量之间均无关联。阅读的项目存在相当大的差异（范围为12 - 44），这反映了广泛的阅读实践。唐氏综合征成年人认识到阅读作为一种愉悦活动以及有助于学习的重要性。
这里开发的MRM可用于（1）作为阅读干预结果测量方法，以补充现有的标准化工具；（2）描述唐氏综合征成年人的有意义阅读情况；（3）指导阅读模块内容；（4）捕捉成年人对自己作为阅读者认知的变化。未来需要开展工作以确定该工具对随时间变化的敏感性。
