Profiling the meaningful reading habits of young people and adults with Down syndrome
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Date
2023
Authors
Jolley, Mary
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Publisher
University College Cork
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Abstract
Introduction: Given the technological advancements over the last 20 years, the impact of how we use written language in society and therefore the ability to read is particularly pertinent for people with Down syndrome. Adults with Down syndrome are now more than ever, accessing their communities, further education and employment. All of these facets of daily life can require aspects of reading, such as the ability to read street signs, text messages or work contracts. However, to date, no large scale, international study has profiled the reading habits of adults with Down syndrome in everyday contexts, or how they feel about reading. This information is invaluable as it can inform reading interventions which are functional to adults with Down syndrome; thus, having a meaningful impact on their quality of life.
Aim: This study aimed to 1) Explore the reading habits of adults with Down syndrome, informed by the priorities of adults with Down syndrome themselves 2), Gather a large,
international profile of meaningful reading for young people and adults with Down syndrome using a valid Meaningful Reading Measure (MRM) (Frizelle et al., 2023) and 3), Investigate whether age, education and place of residence influence meaningful reading for people with Down syndrome.
Method: The research was carried out in two phases. Phase-1: Research questions for the study were prioritised and refined following a structured focus group of adults with Down syndrome (n=9). Phase-2: Using a combination of online survey and paper forms, data on the meaningful reading habits of people with Down syndrome were gathered using the MRM. The refined research questions were then addressed.
Results: Phase-1 Results: The focus group members prioritised research questions such as whether people with Down syndrome liked reading, and what they felt was difficult or the ‘best thing’ about reading. They indicated an interest in those questions that referred to the impact of age and place of residence on meaningful reading. Phase-2 Results: Ninety-eight people with Down syndrome completed the survey. On average, the participants read 34 of the 46 items in the MRM. Scores ranged from 0-46. The most common item read by the sample was cards and food brands and the most common medium for reading was a tablet or computer (45.3%). The most common reason for reading was to pursue personal learning and interests. Many people with Down syndrome felt that reading novel or complex words was difficult and detailed the various challenges they faced with reading. No relationship between age and MRM score was observed. Younger individuals (aged 16-25) read significantly more new media items (p = .007) than older individuals (aged 26-37).
Conclusion: Adults with Down syndrome read a variety of different items in everyday contexts, which are not dissimilar to typical populations. The participants in the study provided a unique insight into the challenges they face with reading; such as the accessibility of texts, complex words, and reading comprehension. In addition, it is evident that reading for both functional use and pleasure is focal in the lives of people with Down syndrome. This information can inform future reading interventions which are motivating, functional and meaningful for people with Down syndrome.
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Keywords
Down syndrome , Down syndrome research , Intellectual disability , Meaningful reading , Meaningful reading measure , Inclusive research , Participatory research
Citation
Jolley, M. 2023. Profiling the meaningful reading habits of young people and adults with Down syndrome. MRes Thesis, University College Cork.