{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T19:51:17Z","timestamp":1785527477337,"version":"3.56.0"},"reference-count":60,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2023,7,20]],"date-time":"2023-07-20T00:00:00Z","timestamp":1689811200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Psychol."],"abstract":"<jats:sec><jats:title>Introduction<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The study was carried out in two stages. Stage 1 used an inclusive participatory design in which individuals with Down syndrome were research collaborators (<jats:italic>n<\/jats:italic>\u2009=\u200946). 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 (<jats:italic>n<\/jats:italic>\u2009=\u200933) and how they experience reading in their everyday lives.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>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\u201344) 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion:<\/jats:title><jats:p>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\u2019 perceptions of themselves as readers. Future work is needed to establish the tool\u2019s sensitivity to change over time.<\/jats:p><\/jats:sec>","DOI":"10.3389\/fpsyg.2023.1173300","type":"journal-article","created":{"date-parts":[[2023,7,20]],"date-time":"2023-07-20T23:40:13Z","timestamp":1689896413000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":3,"title":["The co-construction of a reading assessment measure with adults with Down syndrome: a meaningful literacy approach"],"prefix":"10.3389","volume":"14","author":[{"given":"Pauline","family":"Frizelle","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sean","family":"O\u2019Donovan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Jolley","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa","family":"Martin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicola","family":"Hart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2023,7,20]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"149","DOI":"10.1352\/0895-8017(2003)108<0149:rlsoaa>2.0.co;2","article-title":"Receptive language skills of adolescents and young adults with down or fragile X syndrome","volume":"108","author":"Abbeduto","year":"2003","journal-title":"Am. J. Ment. Retard."},{"key":"ref2","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1002\/mrdd.20158","article-title":"Languagedevelopment in Down syndrome: from the prelinguistic period to the acquisition of literacy","volume":"13","author":"Abbeduto","year":"2007","journal-title":"Ment. Retard. Dev. Disabil. Res. Rev."},{"key":"ref3","doi-asserted-by":"publisher","first-page":"291","DOI":"10.1080\/08856250903016854","article-title":"The efficacy of reciprocal teaching in fostering the reading literacy of students with intellectual disabilities","volume":"24","author":"Alfassi","year":"2009","journal-title":"Eur. J. Spec. Needs Educ."},{"key":"ref4","doi-asserted-by":"publisher","first-page":"207","DOI":"10.1177\/15257401050260040301","article-title":"Determining the adequacy of tests of Children\u2019s language","volume":"26","author":"Andersson","year":"2005","journal-title":"Commun. Disord. Q."},{"key":"ref5","doi-asserted-by":"publisher","first-page":"189","DOI":"10.1080\/07263869500035551","article-title":"Changing existing services for older people with an intellectual disability","volume":"20","author":"Ashman","year":"1995","journal-title":"Aust. N. Z. J. Dev. Disabil."},{"key":"ref6","volume-title":"Reading and writing for children with Down syndrome (5\u201311 years)","author":"Bird","year":"2001"},{"key":"ref300","first-page":"1085","article-title":"Comparing methods of measurement: why plotting difference against standard method is misleading","volume":"346","author":"Bland","year":"1995"},{"key":"ref7","doi-asserted-by":"publisher","first-page":"67","DOI":"10.1080\/10349120120036314","article-title":"A study of functional literacy skills in young adults with Down syndrome","volume":"48","author":"Bochner","year":"2001","journal-title":"Int. J. Disabil. Dev. Educ."},{"key":"ref8","doi-asserted-by":"publisher","first-page":"497","DOI":"10.1023\/A:1016389317827","article-title":"Literacy skills in children and adults with Down syndrome","volume":"15","author":"Boudreau","year":"2002","journal-title":"Read. Writ."},{"key":"ref9","volume-title":"Evidence-based practices for students with severe disabilities (document no. IC-3)","author":"Browder","year":"2014"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"513","DOI":"10.1348\/00070990260377497","article-title":"Reading, language and memory skills: a comparative longitudinal study of children with Down syndrome and their mainstream peers","volume":"72","author":"Byrne","year":"2002","journal-title":"Br. J. Educ. Psychol."},{"key":"ref11","doi-asserted-by":"publisher","first-page":"861","DOI":"10.1044\/jslhr.4104.861","article-title":"Language skills of children and adolescents with Down syndrome: II. Production deficits","volume":"41","author":"Chapman","year":"1998","journal-title":"J. Speech Lang. Hear. Res."},{"key":"ref12","doi-asserted-by":"publisher","first-page":"67","DOI":"10.1177\/1088357608314899","article-title":"Using a three-step decoding strategy with constant time delay to teach word reading to students with mild and moderate mental retardation","volume":"23","author":"Cohen","year":"2008","journal-title":"Focus Autism Other Dev. Disabil."},{"key":"ref13","first-page":"27","article-title":"Image, access and opportunity: children with Down syndrome as readers","volume-title":"Children and childhoods 2: images of childhood","author":"Cologon","year":"2012"},{"key":"ref14","doi-asserted-by":"crossref","DOI":"10.5040\/9781839028526","volume-title":"Teen TV: genre, consumption and identity","author":"Davies","year":"2004"},{"key":"ref200","first-page":"163","volume-title":"Defining meaningful literacy: findings from a socially- oriented literacy intervention for adults with developmental disabilities. International Journal of Disability, Development and Education","author":"Deagle","year":"2016"},{"key":"ref15","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1111\/j.1365-2788.2011.01512.x","article-title":"More academics in regular schools? The effect of regular versus special school placement on academic skills in Dutch primary school students with Down syndrome","volume":"57","author":"de Graaf","year":"2013","journal-title":"J. Intellect. Disabil. Res."},{"key":"ref16","volume-title":"Making written information easier to understand for people with learning disabilities: Guidance for people who commission or produce easy read information","year":"2010"},{"key":"ref17","doi-asserted-by":"publisher","first-page":"116","DOI":"10.1111\/camh.12072","article-title":"Measurement issues: assessing language skills in young children","volume":"20","author":"Dockrell","year":"2015","journal-title":"Child Adolesc. Mental Health"},{"key":"ref18","doi-asserted-by":"crossref","first-page":"117","DOI":"10.1007\/978-94-007-6555-9_8","article-title":"Who among us may be literate? Closing the gap between literacy and diversity","volume-title":"International handbook of educational leadership and social (in) justice","author":"Dukes","year":"2014"},{"key":"ref19","volume-title":"PPVT-4: peabody picture vocabulary test","author":"Dunn","year":"2007"},{"key":"ref20","first-page":"270","article-title":"Literacy for all? The case of Down syndrome","volume":"38","author":"Farrell","year":"","journal-title":"J. Read."},{"key":"ref21","doi-asserted-by":"publisher","first-page":"140","DOI":"10.12688\/wellcomeopenres.14861.1","article-title":"The understanding of complex syntax in children with Down syndrome","volume":"3","author":"Frizelle","year":"2018","journal-title":"Wellcome Open Res."},{"key":"ref22","volume-title":"Burt word Reading test\u2014New Zealand revision","author":"Gilmore","year":"1981"},{"key":"ref23","volume-title":"The sustainable development goal 4 and targets","year":"2023"},{"key":"ref24","doi-asserted-by":"publisher","first-page":"5","DOI":"10.1186\/s11689-017-9220-y","article-title":"Memory profiles in Down syndrome across development: a review of memory abilities through the lifespan","volume":"10","author":"Godfrey","year":"2018","journal-title":"J. Neurodev. Disord."},{"key":"ref25","doi-asserted-by":"publisher","first-page":"110","DOI":"10.1097\/YCO.0000000000000037","article-title":"Intellectual disability as a disorder of reasoning and judgement: the gradual move away from intelligence quotient-ceilings","volume":"27","author":"Greenspan","year":"2014","journal-title":"Curr. Opin. Psychiatry"},{"key":"ref26","volume-title":"HSE National Consent Policy","year":"2022"},{"key":"ref27","doi-asserted-by":"publisher","first-page":"1277","DOI":"10.1177\/1049732305276687","article-title":"Three approaches to qualitative content analysis","volume":"15","author":"Hsieh","year":"2005","journal-title":"Qual. Health Res."},{"key":"ref28","doi-asserted-by":"publisher","first-page":"101","DOI":"10.1080\/135468097396351","article-title":"Short-term memory for verbal and visuospatial information in Down\u2019s syndrome","volume":"2","author":"Jarrold","year":"2010","journal-title":"Cogn. Neuropsychiatry"},{"key":"ref29","doi-asserted-by":"publisher","first-page":"235","DOI":"10.1080\/13269780050144299","article-title":"Understanding friendship: young adults with Down syndrome exploring relationships","volume":"25","author":"Jobling","year":"2000","journal-title":"J. Intellect. Dev. Disabil."},{"key":"ref30","first-page":"3","article-title":"Literacy instruction for people with mental retardation: historical highlights and contemporary analysis","volume":"35","author":"Katims","year":"2000","journal-title":"Educ. Train. Ment. Retard. Dev. Disabil."},{"key":"ref31","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1352\/1944-7558-118.1","article-title":"Establishing equivalence: methodological progress in group-matching design and analysis","volume":"118","author":"Kover","year":"2013","journal-title":"Am. J. Intellect. Dev. Disabil."},{"key":"ref32","first-page":"118","article-title":"A usability evaluation of workplace-related tasks on a multi-touch tablet computer by adults with Down syndrome","volume":"7","author":"Kumin","year":"2012","journal-title":"J. Usability Stud."},{"key":"ref33","doi-asserted-by":"publisher","first-page":"134","DOI":"10.1598\/rrq.45.2.1","article-title":"Modeling response to reading intervention in children with Down syndrome: an examination of predictors of differential growth","volume":"45","author":"Lemons","year":"2010","journal-title":"Read. Res. Q."},{"key":"ref34","doi-asserted-by":"publisher","first-page":"185","DOI":"10.1080\/14649880802078736","article-title":"What good is literacy? Insights and implications of the capabilities approach","volume":"9","author":"Maddox","year":"2008","journal-title":"J. Hum. Dev."},{"key":"ref35","doi-asserted-by":"publisher","first-page":"843","DOI":"10.1111\/jir.12390","article-title":"A prospective 20-year longitudinal follow-up of dementia in persons with Down syndrome","volume":"61","author":"McCarron","year":"2017","journal-title":"J. Intellect. Disabil. Res."},{"key":"ref36","volume-title":"A new system for better employment and social outcomes. Report of the reference group on welfare reform to the minister for social services","author":"McClure","year":"2015"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"539","DOI":"10.1016\/j.jclinepi.2010.02.006","article-title":"The COSMIN study reached international consensus on taxonomy, terminology and definitions of measurement properties for health-related patient-reported outcomes","volume":"19","author":"Mokkink","year":"2010","journal-title":"Qual. Life Res."},{"key":"ref38","first-page":"40","article-title":"LATCH\u2013ON: a literacy course for young adults with Down syndrome","volume":"44","author":"Moni","year":"2000","journal-title":"J. Adolesc. Adult Lit."},{"key":"ref39","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1080\/10349120120094275","article-title":"Reading-related literacy learning of young adults with Down syndrome: findings from a three year teaching and research program","volume":"48","author":"Moni","year":"2001","journal-title":"Int. J. Disabil. Dev. Educ."},{"key":"ref40","first-page":"67","article-title":"A case for including popular culture in literacy education for young adults with Down syndrome","volume":"48","author":"Moni","year":"2008","journal-title":"Aust. J. Lang. Lit."},{"key":"ref41","doi-asserted-by":"publisher","first-page":"155","DOI":"10.1111\/jppi.12247","article-title":"Literacy learning outcomes in a longitudinal study of a postschool literacy education program for young adults with intellectual disabilities","volume":"15","author":"Moni","year":"2018","journal-title":"J. Policy Pract. Intell. Disabil."},{"key":"ref42","first-page":"411","article-title":"Literacy strategies used by adults with intellectual disability in negotiating their everyday community environments","volume":"53","author":"Morgan","year":"2013","journal-title":"Aust. J. Adult Learn."},{"key":"ref43","first-page":"737","article-title":"Reading skills in children with Down syndrome: a meta-analytic review","volume-title":"Res. Dev. Disabil.","author":"N\u00e6ss","year":"2012"},{"key":"ref44","doi-asserted-by":"publisher","first-page":"1782","DOI":"10.1016\/j.ridd.2011.03.007","article-title":"The role of vocabulary, working memory and inference making ability in reading comprehension in Down syndrome","volume":"32","author":"Nash","year":"2011","journal-title":"Res. Dev. Disabil."},{"key":"ref45","volume-title":"Neale analysis of reading ability","author":"Neale","year":"1999"},{"key":"ref46","volume-title":"Guidelines for easy- to-read materials, IFLA professional reports, no. 120","author":"Nomura","year":"2010"},{"key":"ref47","doi-asserted-by":"publisher","first-page":"5","DOI":"10.1016\/j.ijedudev.2004.05.001","article-title":"Literacy and development: what works for whom? Or, how relevant is the social practices view of literacy for literacy education in developing countries?","volume":"25","author":"Papen","year":"2005","journal-title":"Int. J. Educ. Dev."},{"key":"ref48","doi-asserted-by":"publisher","first-page":"CD011359","DOI":"10.1002\/14651858.cd011359.pub2","article-title":"Beginning reading interventions for children and adolescents with intellectual disability","volume":"2019","author":"Reichow","year":"2019","journal-title":"Cochrane Database Syst. Rev."},{"key":"ref49","first-page":"580","article-title":"Literacy inequalities in theory and practice: The power to name and define","volume-title":"International Journal of Educational Development","author":"Street","year":"2001"},{"key":"ref50","first-page":"2824","article-title":"The limits of the local-\u2018autonomous\u2019 or \u2018Disembedding\u2019?","volume":"10","author":"Street","year":"2003","journal-title":"Int. J. Learn."},{"key":"ref51","doi-asserted-by":"publisher","first-page":"297","DOI":"10.1111\/jppi.12201","article-title":"The evidence for easy-read for people with intellectual disabilities: a systematic literature review","volume":"13","author":"Sutherland","year":"2016","journal-title":"J. Policy Practi. Intell. Disabil."},{"key":"ref52","doi-asserted-by":"publisher","first-page":"1273","DOI":"10.1007\/s11165-016-9602-2","article-title":"The use of Cronbach\u2019s alpha when developing and reporting research instruments in science education","volume":"48","author":"Taber","year":"2018","journal-title":"Res. Sci. Educ."},{"key":"ref53","doi-asserted-by":"publisher","first-page":"500","DOI":"10.1598\/jaal.49.6.5","article-title":"Informal adult learning and everyday literacy practices","volume":"49","author":"Taylor","year":"2006","journal-title":"J. Adolesc. Adult. Lit."},{"key":"ref54","volume-title":"Convention on the rights of persons with disabilities","year":"2006"},{"key":"ref55","doi-asserted-by":"publisher","first-page":"65","DOI":"10.1111\/j.1468-3156.2004.00281.x","article-title":"Inclusive learning disability research: the (nondisabled) researcher\u2019s role","volume":"32","author":"Walmsley","year":"2004","journal-title":"Br. J. Learn. Disabil."},{"key":"ref56","doi-asserted-by":"publisher","first-page":"514","DOI":"10.1598\/JAAL.48.6.6","article-title":"Are we having fun yet? Students, social class and the pleasures of literacy","volume":"48","author":"Williams","year":"2005","journal-title":"J. Adolesc. Adult Lit."},{"key":"ref57","doi-asserted-by":"publisher","first-page":"1093","DOI":"10.1044\/1092-4388(2007\/076)","article-title":"The relationship among receptive and expressive vocabulary, listening comprehension, pre-reading skills, word identification skills, and reading comprehension by children with reading disabilities","volume":"50","author":"Wise","year":"2007","journal-title":"J. Speech Lang. Hear. Res."},{"key":"ref58","volume-title":"Woodcock reading mastery tests \u2013 revised","author":"Woodcock","year":"1987"}],"container-title":["Frontiers in Psychology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2023.1173300\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,10,24]],"date-time":"2024-10-24T19:09:31Z","timestamp":1729796971000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2023.1173300\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,7,20]]},"references-count":60,"alternative-id":["10.3389\/fpsyg.2023.1173300"],"URL":"https:\/\/doi.org\/10.3389\/fpsyg.2023.1173300","relation":{},"ISSN":["1664-1078"],"issn-type":[{"value":"1664-1078","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,7,20]]},"article-number":"1173300"}}