Those With Cognitive Disabilities Can't Read and Understand Health Information
Wellness Await. 2022 December; xx(6): 1189–1200.
Easy read and attainable data for people with intellectual disabilities: Is information technology worth it? A meta‐narrative literature review
Deborah Chinn
one Florence Nightingale Faculty of Nursing and Midwifery, King's College London, London, United kingdom of great britain and northern ireland,
Claire Homeyard
1 Florence Nightingale Faculty of Nursing and Midwifery, King'due south Higher London, London, United kingdom of great britain and northern ireland,
Abstract
Background
The proliferation of "accessible information" for people with intellectual disabilities in U.k. health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. All the same, questions have been raised every bit to the touch on of such resources as a ways of enhancing involvement in health care and addressing health inequalities.
Objective
To review and synthesize the show from different approaches used to evaluate the impact of accessible data for people with intellectual disabilities using a meta‐narrative arroyo.
Search strategy
Literature searches were iterative and incorporated formal databases, grey literature and mitt searches alongside more than intuitive and opportunistic methods.
Inclusion criteria
Included English language papers published earlier December 2022 described the design and evaluation of written information adapted for adults with intellectual disabilities.
Data extraction and synthesis
We organized the papers into five groups according to similarity in authors' writing styles and presentation, epistemology and theoretical foundations, aims and methodologies, professional and organizational identities.
Chief results
The 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualized materials, (ii) literacy equally decontextualized skills vs social practices and (iii) the expertise of patients vs professionals. In that location was limited show for the impact of attainable health information, notwithstanding the potential benefits associated with their creation.
Conclusions
Individually tailored data is more than likely to encounter personalized health information needs for people with intellectual disabilities. The emergence of dissimilar social formations in the creation of accessible information has potential for advancing engagement of diverse groups.
Keywords: accessibility, easy read, wellness information, intellectual disabilities, meta‐narrative review
1. INTRODUCTION
The provision of "accessible information" to people with intellectual disabilities is frequently characterized equally the respond to some "wicked" (persistent, resistant to solution) bug1 relating to equal admission to wellness and well‐being. Policy documents and statements past politicians, practitioners, researchers and self‐advocates suggest that accessible data volition allow people with intellectual disabilities to become more self‐determining, minimize health inequalities, promote active citizenship and bring about the empowerment of a social group whose voice is often excluded and ignored.two, 3
Consequently, the availability of accessible information has proliferated greatly in recent years, especially in the health field. In that location are a number of guidance documents available that supply instructions for creating accessible resourcesfour, five and an ever widening range of information resource have been published in an accessible information format (a recent United kingdom of great britain and northern ireland spider web search turned up 24 different resources relating to blood tests lonely). The requirement for service providers to brand "reasonable adjustments" to their provision, including information they offer about their services, is at present enshrined in the 2010 Equalities Deed.6 The establishment of the NHS England Accessible Data Standardvii is a recent endeavor to operationalize the adjustments that are expected from all health and social intendance agencies.
In that location have been some more than sceptical voices, raising questions about the real touch on of such resources and whether they are in fact fit for purpose, conveying all the necessary information in a clear and simple manner.eight, 9 Some accept queried whether the import of accessible data is more symbolic as a marking of ideological delivery to inclusion, rather than a practical means of enhancing the cognition of people with intellectual disabilities.eight, 10 Others have highlighted the risk that accessible data will exist handed to people with intellectual disabilities without appropriate support or attention to their individual advice needs.xi
To date, in that location is footling systematically reviewed evidence that supports this policy‐level commitment to adapting health information for people with intellectual disabilities by confirming its effectiveness. This review is therefore an attempt to fill this gap and moreover to include a broad range of perspectives and approaches to exploring the value of accessible information.
2. METHODOLOGY
Greenhalgh and colleagues12, thirteen suggest "meta‐narrative" as an approach to literature reviewing that does non seek to iron out major theoretical and methodological differences between studies, simply collects similar studies into defined enquiry traditions and paradigms. Each of these traditions brings to bear its own epistemology and methodology in addressing the research question. The reviewers' job is to highlight the insights from each tradition, annotate on the agreements and disagreements between them compare and come up with higher order themes that cover these. This orientation is explicitly constructivist; the focus is on systems of pregnant making associated with different paradigms, rather than determining any 1 underlying truth.
More recently, the principles of meta‐narrative review take been used in smaller scale studies14, fifteen with a more focused telescopic than the original, broad ranging reviews. In similar vein, nosotros adopted the key strategies of meta‐narrative review (meet Figure1), keeping in listen the vi guiding principles of this arroyo (pragmatism, pluralism, historicity, contestation, reflexivity and peer review) and using recent guidance16, 17 equally a criterion to evaluate the quality of our report design, execution and writing up. Our research questions were:
Steps for undertaking meta‐narrative review (from Greenhalgh et al. 12)
-
ane
How has the impact of accessible health information for people with intellectual disabilities been evaluated? Are there different groupings that might correspond "bodies of cognition" relating to this field?
-
ii
In each of these groupings
- ○ What are the underpinning concepts, theories and methodological approaches?
- ○ Are foundational and high‐quality studies identified?
- ○ What are the key empirical findings and conclusions?
-
three
Comparing the different groupings,
- ○ Can commonalities be found between the assumptions, approaches, findings and conclusions of the different groups?
- ○ How practise agreements and disagreements amidst the groupings suggest college order insights?
-
iv
What further research is indicated?
2.1. Definitions
The definition of "attainable information" for people with intellectual disabilities raised challenges. There is no single generally accepted conceptualization, which means information technology is often ill‐defined within contemporary policy documents. Within health‐care settings, understandings are skewed towards easy‐to‐read resources,5 although others have insisted that the fashion of delivery of dataeighteen or the involvement of people with intellectual disabilities in creating accessible information resourcestwo is key.
For example, "like shooting fish in a barrel read" is a term that has come up into common utilise in the UK to describe information designed specifically for people with intellectual disabilities as a group with particular literacy needs. It has supplanted other terms ("piece of cake to read," "easier information") and is constitute on many adjusted public documents. This term is non so common in other English language‐speaking countries, although is gaining ground in Australasia.
3. METHODS
iii.1. Scoping
The initial scoping stage of the review involved reflecting on our prior noesis as researchers and clinicians. We contacted others engaged in like work, tracked citations from the reference lists of guidance documents and opinion pieces and embraced serendipitous discoveries of different areas of piece of work. A combination of Medical Sub‐Headings (MeSH) terms supplemented with gratis‐text words relating to "accessible information," "like shooting fish in a barrel read"/"easy to read," and terms for intellectual disabilities was drawn upwards to identify potentially relevant literature in searchable bibliographic databases.
3.2. Searching
We conducted a search in Dec 2022 Maternity and Infant Care (MIC), Usa National Library of Medicine's bibliographic database (MEDLINE), American Psychological Clan (PsycINFO), Excerpta Medica Database (EMBASE), Wellness Management Information Consortium (HMIC) and Cumulative Index to Nursing & Allied Health Literature (CINHAL).
Next, an iterative process was initiated whereby nosotros identified additional references by mitt searching the reference lists and citations of relevant papers. We included "grey literature" such as reports published by public bodies found through Net searching.
three.3. Report selection
Study titles and abstracts were screened for eligibility, allowing for word to resolve whatsoever uncertainties. For studies non excluded on title and abstract, we obtained the total newspaper and assessed it in more particular. We established inclusion and exclusion criteria in order to come up with a more manageable number of papers, whilst avoiding an overly restrictive limitation of the studies to be included (Figureii). Although our principal interest was in health data, we did not restrict our search to that field; a few papers were included that looked at information relating to voting,19 consent to participation in enquiryxx or the criminal justice arrangement.21 Nosotros did non include video or digital resource. We recognize that these formats offer many exciting possibilities for people with intellectual disabilities; however, their creation and apply require access to relatively specialist and expensive resources, compared to print media or sound recordings.
Inclusion and exclusion criteria
iii.4. Data extraction
Nosotros tabulated key bibliographic features of the studies. Reading, rereading and discussing our selected studies with an heart on this tabular array helped u.s.a. to identify groupings of papers where there were commonalities in styles of writing and presentation; aims, methodologies and study blueprint; professional or organizational identities and ideological affiliations. This was not a one‐off process; our categorization underwent considerable adjustment and refinement. We did not find a great deal of cantankerous‐referencing between studies and struggled to identify "seminal" or foundational studies that received most citations and themselves stimulated development of what might be identified as a "enquiry tradition." In some cases, we went farther than the authors themselves in associating them with wider research fields or epistemological frameworks equally these aspects of the papers were largely implicit.
Inductive coding using NVivo 11 (QSR, 2015) of one group of papers led usa to create a coding framework that we then applied to the other groupings. This allowed us to dissimilarity and compare across the different groupings. To enhance consistency of data extraction, we coded the same two papers individually and then compared the data extracted and lawmaking headings. Following discussion and agreement on the code headings, we divided the remaining papers and coded them.
3.v. Quality appraisement
Is often not appropriate for a meta‐narrative review to apply the same quality criteria to all the studies under review. Where singled-out approaches to the enquiry topic accept been identified, Wong et al.xvi recommend that "studies in these separate traditions should be appraised using the quality criteria that a competent peer‐reviewer in that tradition would cull to use (p19)" rather than post-obit a unmarried pre‐adamant protocol to evaluate quality. Therefore, considerations of study quality are addressed within the summaries of each research grouping in the results department below. Withal, it is important to note that only the papers published in practitioner or academic journals, as distinct from greyness literature and reports, were subjected to a transparent peer‐review procedure.
4. RESULTS
Twoscore‐two papers were included in the review (see Figure3), which we collated into 5 groups (Table1). The near contempo print versions of papers are listed. In this section, we present accounts of each grouping before offering a synthesis of findings and inferences across the groups.
Table 1
Grouping studies for meta‐narrative review
| Description | Cardinal characteristics | Studies included | |
|---|---|---|---|
| Group ane | Practitioner Accounts | Authored mainly by clinicians. Description of development and mainly qualitative audience testing of own resource. | Aman et al. (2007) Project MED: Effects of a Medication EDucation booklet series for individuals with intellectual disabilities Intellectual and Developmental Disabilities. 45 (i), 33–45. |
| Dawson (2011) How to make information on health intendance accessible to all. Learning Disability Practice. fourteen (four), 23‐25. | |||
| Gaudion et al. (2013) Mothers with a learning disability: admission, information provision and ongoing appointment in antenatal care. Bachelor at http://thepolyannaproject.org.uk/resources/polyanna_project-mothers_with_a_learning_disability.pdf | |||
| Gilbert et al. (2007) Supporting people with intellectual disability in the cancer journeying: The 'living with cancer' advice pack. European Journal of Oncology Nursing. 11(four), 357–61. | |||
| Howieson & Clarke (2013) Ensuring service users tin can access crucial data, Learning and Disability Do. sixteen(ane), 22‐25. | |||
| Kelly (2011) Diabetes and Me: Learning disabilities and diabetes. Journal of Diabetes Nursing. 15 (8), 308‐312. | |||
| Rex (2011) Clear data can cut inequalities in learning disabilities. Nursing Times. 107 (four), 22–24. | |||
| Parsons, & Sherwood (2016). A pilot evaluation of using symbol‐based information in police custody. British Journal of Learning Disabilities. 44(three), 212‐224. | |||
| Porter et al. (2012) Developing the pregnancy back up pack for people who have a learning disability. British Journal of Learning Disabilities, 40(4), 310‐317. | |||
| Poynor (2003) Being 'chest enlightened'. Learning Inability Practice, 6 (4), 10‐14. | |||
| Russell (2006) Developing health resources with the assistance of people with Down syndrome, Learning Disability Practice ix (four), 16–18. | |||
| Grouping ii | People with intellectual disabilities as resource evaluators | Authors were from inability studies and self‐advocacy backgrounds. Foregrounded opinions of people with intellectual disabilities. | Clark (2002) Accessible Wellness Information: Project Report. Liverpool: Liverpool Central Primary Intendance Trust. |
| Codling & Macdonald (2008) User‐friendly data: does information technology convey what it intends? Learning Disability Practice, 11(ane), 12‐17. | |||
| Dowds (2011) Evaluation of Alter resource to support the information needs of parents with learning disabilities with professionals. Bachelor at http://www.healthscotland.com/. | |||
| Essex County Quango (2015) Annual Health checks: a report on Like shooting fish in a barrel Read Information. Available at https://www.improvinghealthandlives.org.uk/adjustments/?aligning=347 | |||
| Ledger & Shufflebotham (2003) Like shooting fish in a barrel guide to physical interventions for people with learning disabilities, their carers and supporters. British Journal of Learning Disabilities. 31, 103‐105. | |||
| Lewis et al. (2011) Evaluation with expectant and new parents with children from pregnancy to age five y of CHANGE resources to support parents with learning disabilities. Available at https://www.choiceforum.org/docs/enewpr.pdf. | |||
| Marriott & Tarleton (2008) Finding the Right Assistance. Bristol: Norah Fry Enquiry Middle. | |||
| Turnpenny et al. (2015) Developing an Like shooting fish in a barrel Read version of the Developed Social Intendance Outcomes Toolkit (ASCOT). 2022 Available at https://kar.kent.air conditioning.uk/49040/1/4907.pdf | |||
| Group iii | People with intellectual disabilities reflecting on processes of creation of resources | Authored/co‐authored past people with intellectual disabilities, aligned with principles of inclusive and participatory enquiry | Tin can you sympathize information technology group (2014) Oxleas 'Tin can you understand it?' grouping. Advances in Mental Health and Intellectual Disabilities. eight(four), 268–270. |
| Goodwin et al. (2015) Easy Information near inquiry: getting the message out to people with learning disabilities. British Journal of Learning Disabilities, 43(2), 93–99. | |||
| Tuffrey‐Wijne & Bernal (2003) 'Getting on' with cancer. Learning Disability Exercise. 6(v), 10‐xv | |||
| Wyre Forest Cocky Advocacy & Tarleton (2005) Writing it ourselves. British Periodical of Learning Disabilities. 33(2), 65–9. | |||
| Group four | Observations of accessible information in utilise | Addressed the question of how attainable information was used to address real‐life issues. Interest in interaction context where attainable data might be used. | Dodd & Brunker (1999) 'Feeling poorly': report of a airplane pilot written report aimed to increase the ability of people with learning disabilities to empathize and communicate well-nigh concrete illness. British Journal of Learning Disabilities. 27(1), ten–xv. |
| Jones et al. (2006) Meeting the cancer data needs of people with learning disabilities: experiences of paid carers. British Journal of Learning Disabilities. 35(i), 12–18. | |||
| Mander (2016) aAn investigation of the delivery of wellness‐related accessible data for adults with learning disabilities. Tizard Learning Inability Review, 21(1), 15‐23. | |||
| Mander & Rigby (2014) Obtaining patient feedback for doctors' revalidation using attainable resources. Available from at http://world wide web.solent.nhs.uk/_store/documents/accessible_patient_feedback_report.pdf. | |||
| Macer & Fox (2010) Using a communication tool to help clients express their health concerns. Learning Disability Practice. 13(ix), 22–4. | |||
| Oldreive & Waight (2013) Enabling admission to information by people with learning disabilities. Tizard Learning Disability Review. 18 (ane), 5–15. | |||
| Tuffrey‐Wijne et al. (2006) People with intellectual disabilities and their need for cancer information. European Journal of Oncology Nursing. 10(two), 106‐16. | |||
| Group 5 | Evaluation of the effects of attainable information | Employ of experimental paradigms under relatively controlled conditions to investigate whether accessible information was easier to read and understand for people with intellectual disabilities. | Cardone (1999) Exploring the utilise of question methods: pictures exercise not always help people with learning disabilities. The British Journal of Development Disabilities. 45(89), 93–98. |
| Dye et al. (2006) Capacity to consent to participate in inquiry–a recontextualization. British Journal of Learning Disabilities. 32(3), 144–150. | |||
| Fajardo et al. (2012) Easy‐to‐read texts for students with intellectual disability: linguistic factors affecting comprehension. Journal of Applied Research in Intellectual Disabilities. 27(iii), 212‐225. | |||
| Feldman & Case (1997). The effectiveness of audiovisual self‐instructional materials in educational activity child‐care skills to parents with intellectual disabilities. Journal of Behavioral Education, 7(2), 235‐257. | |||
| Huenerfauth et al. (2009) Comparing evaluation techniques for text readability software for adults with intellectual disabilities. In: Proceedings of The 11th International ACM SIGACCESS Briefing on Computers and Accessibility ACM; 2009, p. 3–10. Available at http://dl.acm.org/citation.cfm?id=1639646 | |||
| Hurtado et al. (2013) Is Easy Read data really easier to read? Periodical of Intellectual Disability Inquiry. 58(ix), 822‐829. | |||
| Jones et al. (2007) Symbols can amend the reading comprehension of adults with learning disabilities. Journal of Intellectual Disability Inquiry. 51(7):545–550. | |||
| Murphy & Cameron (2008) The effectiveness of talking mats® with people with intellectual disability. British Journal of Learning Disabilities, 36, 232‐241. | |||
| Poncelas & Murphy (2007) Accessible information for people with intellectual disabilities: Do symbols really help? Periodical of Applied Inquiry in Intellectual Disabilities, 20(5), 466‐474. | |||
| Strydom et al. (2001) Patient information leaflets for people with learning disabilities who take psychiatric medication. British Journal of Learning Disabilities, 29(2), 72‐76. | |||
| Strydom & Hall (2001) Randomized trial of psychotropic medication data leaflets for people with intellectual disability. Journal of Intellectual Disability Inquiry, 45 (ii), 146‐151. | |||
| Yaneva (2015) Easy‐read documents as a gold standard for evaluation of text simplification output. In: ACL Educatee Enquiry Workshop. Bachelor at http://www.anthology.aclweb.org/R/R15/R15-2.pdf#folio=38 |
four.i. Group 1: Practitioner accounts
The authors of these articles were mainly clinicians who created their own resources for distribution or use by a specified group of people with intellectual disabilities. These articles were mostly published in journals accessed by practitioners that provided opportunities for authors to share information and experiences and publicize their work and raise the profile of the service they worked in, rather than accelerate theory or methodology. The 12 papers we placed in this group on the whole provide more item on the processes involved in creating accessible resource, with less data about the evaluation of their impact.
Authors orientated at the starting time of their papers to the "rights agenda," the legislative context of equalities legislation, also as health inequalities experienced by people with intellectual disabilities. All the same, the authors generally took for granted a traditional patient teaching framework22 in which adept knowledge and advice is main. In this model, the role of health pedagogy is to analyze and disseminate the message for uptake by patients, who are assumed to be lacking in knowledge and skills necessary to maintain health. Justifications given by authors for undertaking adaptations highlighted the knowledge and communicative deficits of people with intellectual disabilities.23, 24
In add-on, the professional and organizational needs of practitioners and service providers were foregrounded. Practitioners as well as people with intellectual disabilities were featured as producers and recipients of accessible information that was proposed as a component of improving service quality, particularly the goal of improving the capabilities of mainstream services to piece of work finer with people with intellectual disabilities. Moreover, authors furnished examples of specialist intellectual inability staff and mainstream health staff meeting to work on resource production.23, 25, 26 Some authors also made reference to their adapted materials being helpful for a range of service users who might struggle with reading English language, a farther justification for service fourth dimension and free energy to be put into creating and disseminating these resources.21, 23, 27
Evaluation was conducted mainly via focus groups of people with intellectual disabilities or staff, interviews or through monitoring uptake of the resource. Analysis of responses was mainly qualitative (but Aman et al. 27 presented statistical assay of responses) with, in some cases, thin details virtually specific methods of collecting or analysing data.
These papers present an overwhelmingly positive view of the resources nether consideration, although the lack of detail in some accounts (uncomplicated statements to the effect of "the fabric was well received"28) does beg the question of how far opportunities were offered to elicit more critical responses. Moreover, there may be a hazard of publication bias, since initiatives that met with more than lukewarm responses are less likely to exist written up, especially by busy practitioners. Authors also told positive stories of resource existence taken up in large numbers by health and social intendance organizations every bit indications of the success of the accessible information project.25, 29
4.2. Grouping 2: People with intellectual disabilities every bit resource evaluators
These authors of the nine papers in this group described projects where the opinions of people with intellectual disabilities were foregrounded every bit reviewers of accessible information resources (one or many) that had been created elsewhere. In 4 cases, authors were office of independent research teams who had been commissioned to review a specific resource.21, 30, 31, 32 Participants were in many cases associated with cocky‐advocacy organizations 31, 33 or those that worked with people with intellectual disabilities as coresearchers.34, 35
The authors of these papers were more likely to marshal explicitly with the social model of disability.36 The importance of people with intellectual disabilities taking an equal role in designing accessible resources and as well having control over when and how the resources were used was emphasized. Authors drew attention to power imbalances between people with intellectual disabilities and others (carers and paid staff). They suggest that staff and supporters themselves can present barriers to disabled people in terms of distribution of resources and their use to promote free and unbiased decision making past people with intellectual disabilities.32
The findings of this group were more ambivalent than Group 1. Many participants in these studies were appreciative of efforts to make written information more accessible. Yet, in most of these papers, limitations in the accessible information were highlighted, particularly ambiguous visual images32, 33 and wordings,37 having too much information, being too difficult to read, even for "competent readers".37, 38 Some authors pointed out how simplifying a visual image or written information made its meaning less, rather than more than clear.
Possibly because of their background in disability studies and self‐advancement, these authors offered a more than circuitous understanding of admission for people with intellectual disabilities39 that encompassed not merely the existence of adjusted resource, but also their distribution and availability. Many of their participants mentioned problems in getting concur of resources30, 31, 36, 38; these constituted further barriers to access and might be caused by funding for a resource drying upwards 34, 35 or professionals not handing them on to people with intellectual disabilities.30
4.3. Grouping three: People with intellectual disabilities reflecting on process of creating resources
The three studies in this surface area were papers authored or co‐authored by people with intellectual disabilities, or referred to work authored past someone with intellectual disabilities. They appeared in British specialist intellectual inability journals that are welcoming of papers in easier to read formats,40 and all included illustrations. The stated aim of these studies was to highlight the capabilities of people with intellectual disabilities as producers of accessible information. In many ways, they depart from what is usually considered adequate as a inquiry written report, with little reference to background academic literature or impersonal appraisal of information. Their value is judged to reside in their close alignment with the principles of inclusive/participatory research every bit reflecting the agency and voice of people with intellectual disabilities.41
There is an awareness of how creation and use of written information engage not just the cognitive aspects of the self, only also sociality and emotion. The cocky‐advocate authors mentioned how their role/task gives them social identity and enhances social bonds and self‐esteem.42, 43 Moreover, their involvement allows them to operate inside what Glynos & Speed telephone call "a government of recognition" made bachelor through coproduction models44 that publicly foregrounds the capabilities, rather than deficits of disabled people.
4.4. Grouping four: Observations of accessible data in use
These qualitative studies involved reports or observations of people with intellectual disabilities making employ of adapted information resources in relatively naturalistic environments or to address real‐life bug. All of the lead authors were learning inability specialist practitioners from allied wellness professions.
The papers described ways in which the adaptation was personalized for the individual with intellectual disabilities. The role of supporters and the importance of their expertise in facilitating use of accessible data were highlighted. The authors' concept of "informational accessibility" did non begin and terminate with simplifying a specific text; they emphasized the importance of prior assessment of individual communicative capacities and needs45 and of the mode of delivery of adjusted information.eighteen
Their conclusions were mixed. In contexts where the information under give-and-take had particular valency or significance (either emotional or professional) for the supporters, for instance when it was part of a health promotion consultation,18 or a discussion about cancer, the supporters' own views and interpretations of the materials appeared to have precedence.46 This might mean that supporters used the materials to emphasize normative behaviour regarding health promotion (rather than outlining choices) or avoided aspects of the resource they found hard or upsetting. Relying on reports of carers or professionals, rather than using observational methods, perhaps gave a more positive view of the bear on of accessible data in real‐life settings, such as visiting the doctor.47 A drawback for these papers is the very small numbers of people involved in the studies with ten or fewer participants with intellectual disabilities in all cases.
iv.v. Group 5: Evaluation of effects of attainable information
These papers are from dissimilar disciplinary traditions (clinical psychology, psychiatry, speech and language therapy, teaching, computational linguistics) although all aimed to evaluate the actual use of adaptations to make information more accessible to people with intellectual disabilities using experimental paradigms nether relatively controlled conditions. An institutional commitment to bear witness‐based medicine48 was evidenced in the rationales authors offered for their research. Papers were published in peer‐reviewed journals aimed at a clinical academic audience. Authors compared the impact of adjusted materials to information provided in conventional or more than complex formats and used quantitative methodologies to compare between and within groups. A number of these papers used standardized tests of reading or comprehension to categorize participants with ID. The archway of scholars working in linguistics49 and computational linguistics50, 51 into this area is noteworthy.
The adaptations to the materials that were offered to people with intellectual disabilities were diverse, and strategies included calculation or substituting visual images such as photographs,20, 52 clipart,51 symbols19, 53 or pictures;54, 55 or irresolute the complexity, linguistic features or presentation of the text.20, l, 51, 56 The paper by Feldman et al.56 was the merely one to explore the impact of presenting text in an audio rather than video format. This variety does pose some difficulties in drawing overall conclusions from the studies' findings.
These studies recruited larger groups of participants (betwixt thirteen and 85 people), although tended to do so "opportunistically." Near were described as having "mild" or "moderate" intellectual disabilities and potential participants with very restricted or no verbal linguistic communication were excluded.
Notwithstanding, the impact of using accessible data was disappointing. Where understanding of the texts was assessed as an outcome measure, and adapted and not‐adjusted texts were compared,xix, 20, 52, 53, 54, 55, 56 just one of these studies53 constitute an advantage for groups who had been given information that had been simplified linguistically or otherwise adapted to brand it easier to sympathize. On the whole, the cognitively more able, or those who did ameliorate on reading tests, seemed to do a improve job of decoding. For those who struggled more than, adapting the text in various ways did not tend to help.
five. SYNTHESIS
In this section, nosotros identify higher order themes through reflecting on the conceptual, methodological and empirical differences between our groupings. These are represented as tensions between various positions with implications for practice, policy and hereafter research; we reflect on these in the final discussion section.
5.1. Public or individualized resources?
Creators of accessible resources are faced with a dilemma regarding whether they address potential consumers of their texts equally a grouping (whether they are seen as inadequate communicators or disabled by social barriers) or individuals. Much accessible data tin be described equally generic57 or public advice defined as big scale in distribution and received by a heterogenous audience. The relationship between the sender and receiver is asymmetrical (from expert to novice), impersonal and controlled by the sender.
Grouping 1 authors focused on producing accessible data as "public information" and Group 5 authors address its effectiveness on this level. Therefore, for Group ane, success tin can exist measured in the uptake of the resource (eg, how many downloads from a website). For Group 5, the resource is judged on how far it assists the understanding of a presumably representative group of people with intellectual disabilities.
For others, specially Group 4, the accessibility of a resources is adamant by the extent to which it has been crafted to come across the individual requirements of the person with intellectual disabilities. This can be designed into an assessment process that precedes the cosmos of the resource45 or into the format of the resource itself, such as Talking Mats58 or Books Across Words59 which both present pictures or symbols only that are used and responded to on an individual level by the person with ID.
5.two. Literacy skills or literacy practices?
Use of reading assessments and readability metrics among Group five authors points to an underlying model of literacy as a set of cognitively based technical skills. Accessible information is proposed as a resource that demands fewer of these skills in decoding texts of people with intellectual disabilities. There are variations in research methodologies, just all involved assessment of individuals looking by themselves at texts chosen and presented past the researchers, in standardized conditions.
A different view of literacy is suggested past the authors who focused more on the use of accessible information in more naturalistic settings, where the texts were of greater personal relevance to the person with intellectual disabilities and those supporting them. These encounters can be seen as "literacy events"; a term common inside New Literacy Studies (NLS)60 to draw "any occasion in which a piece of writing is integral to the nature of the participants' interactions and their interpretative processes (p. 50) ".61 NLS researchers challenge (withal) prevailing definitions of literacy as a set of decontextualized individual skills and reconceptualize it as social practices (underpinned by ideologically reinforced understandings of the nature of literacy and its uses and effects), often involving more than merely the individual reader.
Group 4 authors reflect these sorts of concerns, examining how people with intellectual disabilities, supporters and attainable texts come together in processes of meaning making that relate to participants wider social goals. They offering a more nuanced view of the role of carers as "literacy mediators"62 than authors in the other groups, who promote the importance of giving support to people with intellectual disabilities in using accessible data every bit straightforwardly facilitative.
5.3. People with intellectual disabilities and professionals: whose expertise?
The unlike groups of studies adopted various positions on the part of people with intellectual disabilities in the initiation, blueprint and evaluation of accessible data forth a continuum of involvement.63 At 1 cease of the continuum, judgments about the readability of a text were calculated through estimator algorithmsl—people with intellectual disabilities were non involved at all. In other Grouping five studies, people with intellectual disabilities were involved every bit enquiry "subjects" usually recruited through service settings that they attended, where it might be argued they were something of a captive audience. As participants in these studies, people with intellectual disabilities did not e'er accept significant interest in the design of the materials they were given to test.
At the other terminate of the continuum of involvement, people with intellectual disabilities were described equally the originators of ideas for accessible materials,43, 64 authors and editorial advisers,35, 65 or coresearchers31, 34 into the impact of accessible information.
Between these ii positions, people with intellectual disabilities were engaged as consultants at the beginning and quality checkers and approvers towards the cease of the pattern and production procedure. The importance of involving people with intellectual disabilities was stressed, but the expertise of wellness and communication professionals (frequently bringing together professionals from intellectual disability services, chief and secondary intendance and trust corporate departments) was taken as the starting point for resource design and refinement.
These different positions indicated a tension in the literature regarding the nature of relevant expertise when it comes to creating and evaluating accessible data. From the perspective of literature originating from self‐advocacy and disability studies scholarship, people with intellectual disabilities are regarded as "experts by experience"66 on accessible information, bringing experiential authority67 based on their location within and knowledge of communities of disabled people.
Professional expertise, on the other manus, is usually understood to transcend specific circumstances and life‐experiences. For the researchers, particularly in Grouping 1 who orientated most to institutional requirements, with a high value put on accountability, abstention of risk and respect for bureaucratic hierarchies, expert professional knowledge was highlighted every bit an indicator of quality of attainable information.
half dozen. DISCUSSION
6.i. Limitations of this report
Meta‐narrative review regards intuition, personal and professional person knowledge and networks, and serendipity as resources bachelor to reviewers, although at the expense of the replicability of the review. We therefore admit that this review is itself a crafted narrative, admitting 1 that we have tried to support throughout with reference to our primary sources. Other reviewers might well identify different groupings of studies and highlight different themes.
The relatively discrete focus of our review and our limited resources in undertaking it meant adherence to the guiding principles of historicity (unfolding of research traditions over time) and peer review were a challenge. We refer throughout to "groupings" rather than "research traditions" every bit we found limited mutual awareness and intergroup citation, even between very similar studies, meaning that it was non easy to go a sense of after work building on and elaborating before work. Our engagement with peer review simply extended as far as seeking feedback from peers and mentors; ideally, nosotros would have undertaken the review with back up from a reference group that included different stakeholders, including practitioners, policymakers and people with intellectual disabilities.
6.2. Summary of findings
We began this review with reference to the very all-encompassing claims that have been made for the potential impact of accessible wellness information for people with intellectual disabilities and health providers, including clearer understanding of health and disease, increased decision making, cocky‐management, better health, consumer satisfaction with intendance and price savings. From reviewing the literature, we were unable to find articulate evidence that introducing attainable data leads to these outcomes, at least when it is disseminated as public information.
Peradventure such a conclusion is inevitable; afterwards all, information technology is difficult to establish a clear causal link between delivery of written wellness information and changes in wellness behaviours in the wider population.68 In that location was no clear consensus among the papers reviewed every bit to what constituted the well-nigh important impacts of adapted health information, how to measure out these or what would constitute an adequate degree of quality and rigour in evaluation. At that place were a number of favourable reports on the reception and uptake of adjusted health information by people with intellectual disabilities and those who support them. All the same, we are not even so able to conclude that a presumably basic aspect of adjusted information, that it is reliably easier to empathize than a not‐adjusted version past people with intellectual disabilities, has been achieved.
The reviewed literature does propose that adapted health information has a meliorate chance of making an impact when it is tailored to an individual'south individual requirements for information and chatty support (this is also true for the wider population69). We take also been alerted to the danger that inequal power relationships between people with intellectual disabilities and supporters/professionals can be reproduced in literacy events involving accessible data.
We noted some boosted impacts not directly related to private wellness outcomes; the process of creating and designing accessible health information may bring together different social groups in new ways that might well benefit people with intellectual disabilities. People with intellectual disabilities were able to admission new forms of social majuscule equally authors of attainable data and arbiters of its quality. Nosotros also found examples of specialist intellectual disability staff working more closely with mainstream staff to design and disseminate accessible information.
vii. DIRECTIONS FOR Futurity Enquiry
In selecting our papers for review, we institute that we had to omit literature that was potentially very relevant and valuable, because the authors had not explicitly included people with intellectual disabilities in their research samples, or had in some cases excluded them.70 In the wider literature relating to written wellness communication, simplification of wellness letters and wellness literacy we found widely cited review studies, that explored, for example the usefulness of using visual images in wellness communication71 or compared different strategies for simplifying health information.72 We also discovered a separate literature on making data accessible for people experiencing aphasia afterwards a stroke.73, 74 Farther research is needed to clarify whether at that place are common strategies that are likely to better the accessibility for a range of groups who need communicative back up, or whether different groups have different requirements. Some of the authors of our reviewed papers suggested that resources adult for people with intellectual disabilities offer many benefits to the wider population. This claim needs further empirical exploration.
The review revealed a lack of information nigh how people with intellectual disabilities and the people with support them use accessible information in their everyday lives. Unfortunately, observational research on the communicative experiences of people with intellectual disabilities is nevertheless scarce75; this is even more the case regarding literacy practices.76, 77
If these resources are existence used in real‐life situations, how can we monitor their bear on and specify appropriate outcomes? Dissimilar quantitative and qualitative (including ethnographic and interactional) methodologies are needed to accost the touch on of accessible information. Biomedical inquiry into health advice assumes that improve communication will atomic number 82 to college rates of uptake of services and adherence to professional advice. Still, information technology is as well possible that greater understanding and engagement with health information (including understanding drawbacks and side‐effects of procedures and interventions) may lead to lower rates of take‐upward.78
There was very little attention paid in any of the literature reviewed to the content of accessible information, beyond its readability. There was rarely a critique of the concepts articulated in the resources and the authority of professional knowledge and advice contained within them. In fact of all the literature we reviewed, merely i paper65 discussed the importance of accessible information offering clear choices to people with intellectual disabilities, including the selection to decline handling or appointment in cocky‐care practices.
The information offered in the accessible texts—usually institutionally sanctioned information about biomedicine or services, was assumed to be both neutral and authoritative. The underlying theory of communication pervasive in the literature is based on the mechanistic sender–receiver model of Shannon & Weaver79 whereby information is a article passed from one person to another. Making information "accessible" therefore is equated with breaking down barriers to make sure that data flows freely, the expected management of period existence from the more than to the less knowledgeable.22
Culling conceptualizations of how communication works from a post‐modernist and social constructionist perspective regard language itself as constitutive of social phenomena and identities. Culturally and historically, specific expectations of how people should conduct are transmitted linguistically through the choice and coordination of elements of different modes of meaning (words, picture, gestures).80 Moreover, scholars from cultural and media studies challenge the idea that81 audiences simply absorb the message of the text, instead describing text recipients as involved in agile pregnant making, bringing their own resources to carry on interpretation of a text. This suggests a direction for time to come research that seeks to deconstruct attainable health data texts to discern how people with intellectual disabilities, health professionals and biomedical institutions are constructed within them and also map how texts are taken up, recontextualized and transformed in use.82
CONFLICTS OF Interest
None.
Notes
Funding information
Deborah Chinn's contribution is the outcome of independent research arising from a post‐doctoral research fellowship supported by the National Found for Wellness Research. The views expressed in this publication are those of the writer and not necessarily those of the NHS, the National Found for Health Inquiry or the Section of Health. Open access for this article was funded by Rex's College, London.
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