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Home / What Has Been Done to Make Health Information More Easy for People With Intellectual Disabilities

What Has Been Done to Make Health Information More Easy for People With Intellectual Disabilities

  • Journal List
  • Health Expect
  • five.20(6); 2017 December
  • PMC5689240

Wellness Expect. 2017 Dec; twenty(half-dozen): 1189–1200.

Easy read and accessible data for people with intellectual disabilities: Is it worth it? A meta‐narrative literature review

Deborah Chinn

1 Florence Nightingale Faculty of Nursing and Midwifery, King's College London, London, Britain

Claire Homeyard

1 Florence Nightingale Faculty of Nursing and Midwifery, Rex's College London, London, United kingdom of great britain and northern ireland

Abstract

Background

The proliferation of "accessible data" for people with intellectual disabilities in United kingdom health care has accelerated in recent years, underpinned by policy guidance aslope the recent introduction of mandatory standards. Withal, questions accept been raised as to the bear upon of such resources as a means of enhancing involvement in health care and addressing health inequalities.

Objective

To review and synthesize the show from unlike approaches used to evaluate the touch on of accessible information for people with intellectual disabilities using a meta‐narrative approach.

Search strategy

Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more than intuitive and opportunistic methods.

Inclusion criteria

Included English language papers published before December 2015 described the pattern and evaluation of written information adjusted for adults with intellectual disabilities.

Data extraction and synthesis

Nosotros 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.

Main results

The 42 included papers in the v groupings occupied various positions on (i) public communication vs individualized materials, (two) literacy as decontextualized skills vs social practices and (three) the expertise of patients vs professionals. In that location was limited prove for the touch of accessible health information, nevertheless the potential benefits associated with their creation.

Conclusions

Individually tailored information is more likely to run across personalized health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of attainable information has potential for advancing appointment of diverse groups.

Keywords: accessibility, like shooting fish in a barrel read, wellness data, intellectual disabilities, meta‐narrative review

1. INTRODUCTION

The provision of "accessible information" to people with intellectual disabilities is often characterized as the respond to some "wicked" (persistent, resistant to solution) problemsone relating to equal access to health and well‐existence. Policy documents and statements past politicians, practitioners, researchers and self‐advocates suggest that attainable information will allow people with intellectual disabilities to become more self‐determining, minimize health inequalities, promote active citizenship and bring virtually the empowerment of a social group whose vocalisation is frequently excluded and ignored.2, 3

Consequently, the availability of attainable information has proliferated profoundly in recent years, specially in the wellness field. There are a number of guidance documents bachelor that supply instructions for creating accessible resources4, 5 and an always widening range of information resources have been published in an attainable information format (a recent Britain web search turned upwardly 24 different resources relating to blood tests lonely). The requirement for service providers to make "reasonable adjustments" to their provision, including information they offer about their services, is now enshrined in the 2010 Equalities Deed.6 The establishment of the NHS England Accessible Information Standard7 is a recent try to operationalize the adjustments that are expected from all wellness and social care agencies.

There have been some more than sceptical voices, raising questions virtually the real bear upon of such resource and whether they are in fact fit for purpose, conveying all the necessary data in a clear and simple way.8, ix Some accept queried whether the import of accessible information is more symbolic every bit a marker of ideological delivery to inclusion, rather than a applied means of enhancing the knowledge of people with intellectual disabilities.8, ten Others have highlighted the gamble that accessible information will be handed to people with intellectual disabilities without appropriate support or attention to their individual communication needs.11

To date, there is piffling 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 endeavour to fill up this gap and moreover to include a wide range of perspectives and approaches to exploring the value of accessible information.

two. METHODOLOGY

Greenhalgh and colleagues12, 13 suggest "meta‐narrative" equally an approach to literature reviewing that does non seek to iron out major theoretical and methodological differences between studies, but collects similar studies into defined inquiry traditions and paradigms. Each of these traditions brings to bear its ain 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 comprehend these. This orientation is explicitly constructivist; the focus is on systems of pregnant making associated with different paradigms, rather than determining any one underlying truth.

More recently, the principles of meta‐narrative review have been used in smaller scale studies14, 15 with a more than focused telescopic than the original, broad ranging reviews. In similar vein, we adopted the key strategies of meta‐narrative review (run into Figure1), keeping in heed the six guiding principles of this approach (pragmatism, pluralism, historicity, contestation, reflexivity and peer review) and using recent guidance16, 17 as a criterion to evaluate the quality of our study design, execution and writing up. Our research questions were:

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Steps for undertaking meta‐narrative review (from Greenhalgh et al. 12)

  • one

    How has the impact of accessible health information for people with intellectual disabilities been evaluated? Are there different groupings that might represent "bodies of noesis" 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 primal empirical findings and conclusions?

  • 3

    Comparison the dissimilar groupings,

    • ○

      Can commonalities be establish betwixt the assumptions, approaches, findings and conclusions of the dissimilar groups?

    • ○

      How practice agreements and disagreements among the groupings suggest college order insights?

  • 4

    What further research is indicated?

2.ane. Definitions

The definition of "accessible information" for people with intellectual disabilities raised challenges. At that place is no single generally accepted conceptualization, which means it is often sick‐divers within contemporary policy documents. Within health‐care settings, understandings are skewed towards piece of cake‐to‐read resources,v although others take insisted that the way of delivery of information18 or the interest of people with intellectual disabilities in creating accessible information resources2 is key.

For example, "easy read" is a term that has come up into common use in the UK to draw data designed specifically for people with intellectual disabilities equally a group with particular literacy needs. Information technology has supplanted other terms ("piece of cake to read," "easier information") and is found on many adapted public documents. This term is not so common in other English‐speaking countries, although is gaining basis in Australasia.

3. METHODS

3.one. Scoping

The initial scoping phase of the review involved reflecting on our prior knowledge equally researchers and clinicians. Nosotros contacted others engaged in similar piece of work, tracked citations from the reference lists of guidance documents and opinion pieces and embraced serendipitous discoveries of different areas of work. A combination of Medical Sub‐Headings (MeSH) terms supplemented with gratuitous‐text words relating to "accessible information," "easy read"/"piece of cake to read," and terms for intellectual disabilities was drawn upwardly to identify potentially relevant literature in searchable bibliographic databases.

3.2. Searching

Nosotros conducted a search in December 2015 Maternity and Babe Care (MIC), U.s.a. National Library of Medicine's bibliographic database (MEDLINE), American Psychological Association (PsycINFO), Excerpta Medica Database (EMBASE), Health Management Information Consortium (HMIC) and Cumulative Index to Nursing & Allied Health Literature (CINHAL).

Next, an iterative procedure was initiated whereby we identified additional references by paw searching the reference lists and citations of relevant papers. We included "grey literature" such as reports published by public bodies found through Internet searching.

3.3. Study selection

Study titles and abstracts were screened for eligibility, allowing for discussion to resolve any uncertainties. For studies not excluded on title and abstruse, we obtained the total newspaper and assessed information technology in more detail. We established inclusion and exclusion criteria in society to come up with a more manageable number of papers, whilst avoiding an overly restrictive limitation of the studies to be included (Figuretwo). Although our chief interest was in health information, nosotros did not restrict our search to that field; a few papers were included that looked at data relating to voting,19 consent to participation in enquiryxx or the criminal justice system.21 We did not include video or digital resource. We recognize that these formats offering many exciting possibilities for people with intellectual disabilities; notwithstanding, their creation and use require access to relatively specialist and expensive resource, compared to print media or audio recordings.

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Inclusion and exclusion criteria

three.4. Information extraction

We tabulated key bibliographic features of the studies. Reading, rereading and discussing our selected studies with an eye on this table helped united states to place groupings of papers where there were commonalities in styles of writing and presentation; aims, methodologies and written report blueprint; professional or organizational identities and ideological affiliations. This was not a one‐off process; our categorization underwent considerable aligning and refinement. We did not notice a smashing deal of cross‐referencing between studies and struggled to identify "seminal" or foundational studies that received most citations and themselves stimulated development of what might exist identified as a "research tradition." In some cases, we went further than the authors themselves in associating them with wider research fields or epistemological frameworks as these aspects of the papers were largely implicit.

Inductive coding using NVivo 11 (QSR, 2015) of one grouping of papers led us to create a coding framework that we then practical to the other groupings. This allowed us to contrast and compare across the different groupings. To heighten consistency of data extraction, we coded the aforementioned two papers individually and and then compared the data extracted and code headings. Post-obit discussion and agreement on the code headings, nosotros divided the remaining papers and coded them.

iii.5. Quality appraisal

Is ofttimes not advisable for a meta‐narrative review to employ the same quality criteria to all the studies nether review. Where distinct approaches to the research topic accept been identified, Wong et al.sixteen recommend that "studies in these dissever 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 single pre‐determined protocol to evaluate quality. Therefore, considerations of study quality are addressed inside the summaries of each research grouping in the results section beneath. Nevertheless, it is important to annotation that only the papers published in practitioner or bookish journals, equally distinct from grey literature and reports, were subjected to a transparent peer‐review process.

four. RESULTS

Forty‐two papers were included in the review (meet Figure3), which we collated into five groups (Table1). The about recent print versions of papers are listed. In this section, nosotros present accounts of each group earlier offering a synthesis of findings and inferences across the groups.

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Table 1

Grouping studies for meta‐narrative review

Description Key characteristics Studies included
Group 1 Practitioner Accounts Authored mainly by clinicians. Description of development and mainly qualitative audience testing of own resources. Aman et al. (2007) Projection MED: Furnishings of a Medication EDucation booklet series for individuals with intellectual disabilities Intellectual and Developmental Disabilities. 45 (one), 33–45.
Dawson (2011) How to make information on health intendance accessible to all. Learning Disability Practice. 14 (4), 23‐25.
Gaudion et al. (2013) Mothers with a learning disability: access, information provision and ongoing engagement in antenatal care. Available 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 journey: The 'living with cancer' communication pack. European Journal of Oncology Nursing. xi(4), 357–61.
Howieson & Clarke (2013) Ensuring service users can access crucial information, Learning and Inability Practise. xvi(1), 22‐25.
Kelly (2011) Diabetes and Me: Learning disabilities and diabetes. Periodical of Diabetes Nursing. 15 (eight), 308‐312.
King (2011) Clear information 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(3), 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 'breast aware'. Learning Disability Practice, 6 (4), 10‐14.
Russell (2006) Developing health resources with the help of people with Down syndrome, Learning Disability Practise 9 (iv), xvi–18.
Group 2 People with intellectual disabilities as resource evaluators Authors were from disability studies and self‐advocacy backgrounds. Foregrounded opinions of people with intellectual disabilities. Clark (2002) Accessible Health Information: Projection Report. Liverpool: Liverpool Central Master Care Trust.
Codling & Macdonald (2008) User‐friendly information: does it convey what it intends? Learning Disability Practice, 11(1), 12‐17.
Dowds (2011) Evaluation of Alter resources to support the data needs of parents with learning disabilities with professionals. Available at http://www.healthscotland.com/.
Essex County Council (2015) Almanac Health checks: a study on Easy Read Information. Available at https://www.improvinghealthandlives.org.uk/adjustments/?adjustment=347
Ledger & Shufflebotham (2003) Easy guide to physical interventions for people with learning disabilities, their carers and supporters. British Periodical of Learning Disabilities. 31, 103‐105.
Lewis et al. (2011) Evaluation with expectant and new parents with children from pregnancy to age 5 y of CHANGE resources to back up parents with learning disabilities. Available at https://www.choiceforum.org/docs/enewpr.pdf.
Marriott & Tarleton (2008) Finding the Correct Aid. Bristol: Norah Fry Research Center.
Turnpenny et al. (2015) Developing an Easy Read version of the Developed Social Care Outcomes Toolkit (ASCOT). 2015 Available at https://kar.kent.ac.uk/49040/1/4907.pdf
Group 3 People with intellectual disabilities reflecting on processes of cosmos of resource Authored/co‐authored by people with intellectual disabilities, aligned with principles of inclusive and participatory research Can you understand it group (2014) Oxleas 'Tin can you understand information technology?' group. Advances in Mental Health and Intellectual Disabilities. 8(four), 268–270.
Goodwin et al. (2015) Easy Information most enquiry: 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. half-dozen(v), 10‐15
Wyre Woods Self Advocacy & Tarleton (2005) Writing it ourselves. British Journal of Learning Disabilities. 33(ii), 65–nine.
Group four Observations of accessible information in use Addressed the question of how attainable information was used to address existent‐life issues. Involvement in interaction context where accessible information might be used. Dodd & Brunker (1999) 'Feeling poorly': report of a airplane pilot study aimed to increase the ability of people with learning disabilities to empathize and communicate almost physical illness. British Journal of Learning Disabilities. 27(1), 10–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(1), 12–18.
Mander (2016) aAn investigation of the delivery of health‐related accessible data for adults with learning disabilities. Tizard Learning Disability Review, 21(1), 15‐23.
Mander & Rigby (2014) Obtaining patient feedback for doctors' revalidation using accessible resources. Available from at http://world wide web.solent.nhs.uk/_store/documents/accessible_patient_feedback_report.pdf.
Macer & Pull a fast one on (2010) Using a communication tool to assistance clients express their health concerns. Learning Disability Exercise. 13(9), 22–iv.
Oldreive & Waight (2013) Enabling access to information by people with learning disabilities. Tizard Learning Disability Review. 18 (1), 5–15.
Tuffrey‐Wijne et al. (2006) People with intellectual disabilities and their need for cancer information. European Journal of Oncology Nursing. x(2), 106‐sixteen.
Grouping 5 Evaluation of the effects of attainable information Employ of experimental paradigms nether relatively controlled weather to investigate whether accessible information was easier to read and sympathise for people with intellectual disabilities. Cardone (1999) Exploring the employ of question methods: pictures do not always assist people with learning disabilities. The British Journal of Development Disabilities. 45(89), 93–98.
Dye et al. (2006) Chapters to consent to participate in research–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 Practical Inquiry in Intellectual Disabilities. 27(three), 212‐225.
Feldman & Instance (1997). The effectiveness of audiovisual cocky‐instructional materials in teaching 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 Conference on Computers and Accessibility ACM; 2009, p. 3–x. Bachelor at http://dl.acm.org/citation.cfm?id=1639646
Hurtado et al. (2013) Is Piece of cake Read information really easier to read? Journal of Intellectual Disability Research. 58(ix), 822‐829.
Jones et al. (2007) Symbols can improve the reading comprehension of adults with learning disabilities. Journal of Intellectual Inability Research. 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: Exercise symbols really help? Journal of Applied Inquiry in Intellectual Disabilities, 20(v), 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 information leaflets for people with intellectual disability. Journal of Intellectual Disability Research, 45 (2), 146‐151.
Yaneva (2015) Easy‐read documents as a golden standard for evaluation of text simplification output. In: ACL Student Enquiry Workshop. Available at http://www.anthology.aclweb.org/R/R15/R15-2.pdf#folio=38

4.1. Group 1: Practitioner accounts

The authors of these articles were mainly clinicians who created their ain resources for distribution or utilise by a specified group of people with intellectual disabilities. These articles were by and large 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 advance theory or methodology. The 12 papers we placed in this group on the whole provide more detail on the processes involved in creating accessible resources, with less data about the evaluation of their bear upon.

Authors orientated at the start of their papers to the "rights calendar," the legislative context of equalities legislation, every bit well equally health inequalities experienced by people with intellectual disabilities. All the same, the authors generally took for granted a traditional patient education framework22 in which skilful knowledge and advice is main. In this model, the role of health didactics is to clarify and disseminate the bulletin for uptake by patients, who are assumed to exist defective in knowledge and skills necessary to maintain health. Justifications given by authors for undertaking adaptations highlighted the noesis and communicative deficits of people with intellectual disabilities.23, 24

In addition, the professional person and organizational needs of practitioners and service providers were foregrounded. Practitioners besides as people with intellectual disabilities were featured as producers and recipients of accessible data that was proposed every bit a component of improving service quality, particularly the goal of improving the capabilities of mainstream services to work effectively with people with intellectual disabilities. Moreover, authors furnished examples of specialist intellectual inability staff and mainstream health staff coming together to piece of work on resources production.23, 25, 26 Some authors also made reference to their adjusted materials being helpful for a range of service users who might struggle with reading English language, a farther justification for service fourth dimension and 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 (only Aman et al. 27 presented statistical analysis of responses) with, in some cases, sparse details about specific methods of collecting or analysing data.

These papers nowadays an overwhelmingly positive view of the resources under consideration, although the lack of detail in some accounts (simple statements to the upshot of "the material was well received"28) does beg the question of how far opportunities were offered to elicit more critical responses. Moreover, there may be a take chances of publication bias, since initiatives that met with more than lukewarm responses are less likely to be written upward, especially by busy practitioners. Authors also told positive stories of resources beingness taken up in large numbers by health and social intendance organizations as indications of the success of the accessible data project.25, 29

4.2. Group 2: People with intellectual disabilities as resource evaluators

These authors of the nine papers in this grouping described projects where the opinions of people with intellectual disabilities were foregrounded as reviewers of accessible information resources (one or many) that had been created elsewhere. In 4 cases, authors were function of independent research teams who had been deputed to review a specific resource.21, 30, 31, 32 Participants were in many cases associated with self‐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 align explicitly with the social model of disability.36 The importance of people with intellectual disabilities taking an equal part in designing accessible resource and too 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 advise that staff and supporters themselves tin present barriers to disabled people in terms of distribution of resources and their apply 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 beholden of efforts to make written information more attainable. However, in most of these papers, limitations in the accessible information were highlighted, specially ambiguous visual images32, 33 and wordings,37 having likewise much information, being likewise difficult to read, fifty-fifty for "competent readers".37, 38 Some authors pointed out how simplifying a visual image or written information made its pregnant less, rather than more clear.

Mayhap because of their groundwork in disability studies and self‐advocacy, these authors offered a more circuitous understanding of admission for people with intellectual disabilities39 that encompassed not only the existence of adjusted resource, only likewise their distribution and availability. Many of their participants mentioned problems in getting concur of resourcesxxx, 31, 36, 38; these constituted further barriers to access and might exist caused past funding for a resource drying up 34, 35 or professionals non handing them on to people with intellectual disabilities.30

four.3. Group 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 by someone with intellectual disabilities. They appeared in British specialist intellectual disability 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 acceptable as a research report, with little reference to background academic literature or impersonal appraisal of data. Their value is judged to reside in their shut alignment with the principles of inclusive/participatory research equally reflecting the bureau and voice of people with intellectual disabilities.41

There is an awareness of how creation and use of written information engage non only the cognitive aspects of the cocky, but also sociality and emotion. The self‐advocate authors mentioned how their role/job gives them social identity and enhances social bonds and self‐esteem.42, 43 Moreover, their involvement allows them to operate within what Glynos & Speed call "a government of recognition" made available through coproduction models44 that publicly foregrounds the capabilities, rather than deficits of disabled people.

4.4. Group 4: Observations of attainable data in use

These qualitative studies involved reports or observations of people with intellectual disabilities making utilize of adapted information resources in relatively naturalistic environments or to address real‐life issues. All of the lead authors were learning disability specialist practitioners from allied health professions.

The papers described means in which the accommodation was personalized for the private with intellectual disabilities. The role of supporters and the importance of their expertise in facilitating utilise of accessible information were highlighted. The authors' concept of "informational accessibility" did not begin and end with simplifying a specific text; they emphasized the importance of prior cess of private communicative capacities and needs45 and of the manner of delivery of adapted information.eighteen

Their conclusions were mixed. In contexts where the information under word had particular valency or significance (either emotional or professional) for the supporters, for case when it was role of a health promotion consultation,18 or a discussion about cancer, the supporters' own views and interpretations of the materials appeared to take precedence.46 This might mean that supporters used the materials to emphasize normative behaviour regarding wellness promotion (rather than outlining choices) or avoided aspects of the resource they found difficult or upsetting. Relying on reports of carers or professionals, rather than using observational methods, perhaps gave a more positive view of the impact of accessible information 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.

4.5. Group 5: Evaluation of effects of accessible information

These papers are from different disciplinary traditions (clinical psychology, psychiatry, spoken language and language therapy, didactics, computational linguistics) although all aimed to evaluate the actual utilize of adaptations to brand data more attainable to people with intellectual disabilities using experimental paradigms under relatively controlled conditions. An institutional commitment to bear witness‐based medicine48 was evidenced in the rationales authors offered for their inquiry. Papers were published in peer‐reviewed journals aimed at a clinical bookish audience. Authors compared the bear upon of adapted materials to data provided in conventional or more 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 entrance of scholars working in linguistics49 and computational linguisticsl, 51 into this area is noteworthy.

The adaptations to the materials that were offered to people with intellectual disabilities were various, and strategies included adding 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, 50, 51, 56 The paper by Feldman et al.56 was the only 1 to explore the touch on of presenting text in an audio rather than video format. This diversity does pose some difficulties in drawing overall conclusions from the studies' findings.

These studies recruited larger groups of participants (between thirteen and 85 people), although tended to practise so "opportunistically." Most were described every bit having "balmy" or "moderate" intellectual disabilities and potential participants with very restricted or no verbal language were excluded.

Nevertheless, the impact of using accessible information was disappointing. Where understanding of the texts was assessed equally an outcome measure, and adjusted and non‐adapted texts were compared,nineteen, 20, 52, 53, 54, 55, 56 but i of these studies53 found an advantage for groups who had been given information that had been simplified linguistically or otherwise adjusted to make it easier to sympathize. On the whole, the cognitively more able, or those who did better on reading tests, seemed to do a better task of decoding. For those who struggled more, adapting the text in various ways did not tend to assistance.

5. SYNTHESIS

In this section, we place higher guild themes through reflecting on the conceptual, methodological and empirical differences betwixt our groupings. These are represented as tensions between diverse positions with implications for practice, policy and future enquiry; nosotros reflect on these in the final word section.

v.1. Public or individualized resources?

Creators of attainable resources are faced with a dilemma regarding whether they accost potential consumers of their texts equally a group (whether they are seen as inadequate communicators or disabled by social barriers) or individuals. Much accessible data tin can be described as generic57 or public communication defined as large scale in distribution and received by a heterogenous audience. The relationship between the sender and receiver is asymmetrical (from adept to novice), impersonal and controlled past the sender.

Group one authors focused on producing accessible information every bit "public data" and Group 5 authors address its effectiveness on this level. Therefore, for Group 1, success can be measured in the uptake of the resource (eg, how many downloads from a website). For Group 5, the resource is judged on how far information technology assists the understanding of a presumably representative group of people with intellectual disabilities.

For others, particularly Group 4, the accessibility of a resource is determined past the extent to which information technology has been crafted to meet the individual requirements of the person with intellectual disabilities. This tin be designed into an cess process that precedes the creation of the resource45 or into the format of the resource itself, such equally Talking Mats58 or Books Beyond Words59 which both present pictures or symbols only that are used and responded to on an individual level by the person with ID.

v.2. Literacy skills or literacy practices?

Use of reading assessments and readability metrics among Grouping 5 authors points to an underlying model of literacy as a prepare 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, but all involved assessment of individuals looking by themselves at texts chosen and presented by the researchers, in standardized conditions.

A different view of literacy is suggested by the authors who focused more on the utilise of accessible data in more than naturalistic settings, where the texts were of greater personal relevance to the person with intellectual disabilities and those supporting them. These encounters can exist seen equally "literacy events"; a term common within New Literacy Studies (NLS)60 to describe "any occasion in which a piece of writing is integral to the nature of the participants' interactions and their interpretative processes (p. l) ".61 NLS researchers challenge (even so) prevailing definitions of literacy equally a prepare of decontextualized private skills and reconceptualize it every bit social practices (underpinned by ideologically reinforced understandings of the nature of literacy and its uses and effects), often involving more than merely the private reader.

Group 4 authors reflect these sorts of concerns, examining how people with intellectual disabilities, supporters and accessible texts come up together in processes of meaning making that chronicle to participants wider social goals. They offer 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 information as straightforwardly facilitative.

5.3. People with intellectual disabilities and professionals: whose expertise?

The unlike groups of studies adopted various positions on the role of people with intellectual disabilities in the initiation, design and evaluation of accessible information forth a continuum of interest.63 At one terminate of the continuum, judgments about the readability of a text were calculated through computer algorithms50—people with intellectual disabilities were not involved at all. In other Group 5 studies, people with intellectual disabilities were involved as research "subjects" usually recruited through service settings that they attended, where information technology might be argued they were something of a captive audience. Every bit participants in these studies, people with intellectual disabilities did non always have significant involvement in the design of the materials they were given to test.

At the other end of the continuum of involvement, people with intellectual disabilities were described as the originators of ideas for attainable materials,43, 64 authors and editorial directorate,35, 65 or coresearchers31, 34 into the touch of attainable information.

Between these ii positions, people with intellectual disabilities were engaged as consultants at the beginning and quality checkers and approvers towards the end of the pattern and production process. The importance of involving people with intellectual disabilities was stressed, only the expertise of health and advice professionals (often bringing together professionals from intellectual disability services, main and secondary intendance and trust corporate departments) was taken as the starting point for resource blueprint and refinement.

These different positions indicated a tension in the literature regarding the nature of relevant expertise when information technology 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 data, bringing experiential authority67 based on their location within and knowledge of communities of disabled people.

Professional person expertise, on the other hand, is unremarkably understood to transcend specific circumstances and life‐experiences. For the researchers, peculiarly in Group ane who orientated most to institutional requirements, with a loftier value put on accountability, avoidance of gamble and respect for bureaucratic hierarchies, proficient professional noesis was highlighted as an indicator of quality of attainable information.

six. DISCUSSION

6.1. Limitations of this study

Meta‐narrative review regards intuition, personal and professional knowledge and networks, and serendipity as resources available to reviewers, although at the expense of the replicability of the review. We therefore acknowledge that this review is itself a crafted narrative, admitting one that we have tried to support throughout with reference to our main sources. Other reviewers might well identify different groupings of studies and highlight different themes.

The relatively detached focus of our review and our limited resources in undertaking information technology 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" as we establish limited mutual awareness and intergroup citation, fifty-fifty between very similar studies, significant that it was not easy to become a sense of after work building on and elaborating earlier work. Our engagement with peer review only extended as far as seeking feedback from peers and mentors; ideally, we 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 extensive claims that have been made for the potential affect of attainable health information for people with intellectual disabilities and health providers, including clearer understanding of health and illness, increased conclusion making, cocky‐direction, ameliorate health, consumer satisfaction with care and cost savings. From reviewing the literature, nosotros were unable to find clear evidence that introducing accessible data leads to these outcomes, at least when it is disseminated every bit public information.

Maybe such a conclusion is inevitable; afterward all, it is difficult to institute a clear causal link betwixt delivery of written health data and changes in health behaviours in the wider population.68 There was no clear consensus among the papers reviewed as to what constituted the most important impacts of adapted health data, how to measure these or what would constitute an acceptable degree of quality and rigour in evaluation. There were a number of favourable reports on the reception and uptake of adapted wellness data past people with intellectual disabilities and those who support them. However, we are not yet able to conclude that a presumably basic aspect of adapted information, that it is reliably easier to understand than a non‐adapted version past people with intellectual disabilities, has been accomplished.

The reviewed literature does propose that adapted wellness information has a better take a chance of making an affect when information technology is tailored to an private'due south individual requirements for information and communicative support (this is likewise true for the wider population69). We take as well been alerted to the danger that inequal power relationships betwixt people with intellectual disabilities and supporters/professionals tin can exist reproduced in literacy events involving attainable information.

We noted some additional impacts not directly related to individual health outcomes; the procedure of creating and designing attainable wellness data may bring together different social groups in new means that might well benefit people with intellectual disabilities. People with intellectual disabilities were able to access new forms of social capital letter as authors of accessible data and arbiters of its quality. Nosotros too constitute examples of specialist intellectual disability staff working more closely with mainstream staff to pattern and disseminate accessible information.

seven. DIRECTIONS FOR FUTURE RESEARCH

In selecting our papers for review, nosotros found that nosotros 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 health communication, simplification of health messages and health literacy we establish widely cited review studies, that explored, for instance 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 attainable for people experiencing aphasia after a stroke.73, 74 Further research is needed to analyze whether there are common strategies that are likely to improve the accessibility for a range of groups who demand chatty support, or whether unlike groups accept unlike requirements. Some of the authors of our reviewed papers suggested that resources developed for people with intellectual disabilities offering many benefits to the wider population. This claim needs further empirical exploration.

The review revealed a lack of data near how people with intellectual disabilities and the people with support them use accessible information in their everyday lives. Unfortunately, observational inquiry on the communicative experiences of people with intellectual disabilities is even so deficient75; this is even more the case regarding literacy practices.76, 77

If these resources are being used in existent‐life situations, how tin can we monitor their impact and specify appropriate outcomes? Unlike quantitative and qualitative (including ethnographic and interactional) methodologies are needed to address the impact of accessible data. Biomedical research into wellness communication assumes that better communication volition lead to higher rates of uptake of services and adherence to professional advice. However, it is too possible that greater understanding and engagement with health data (including understanding drawbacks and side‐effects of procedures and interventions) may lead to lower rates of take‐up.78

There was very fiddling attending paid in whatever 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 person noesis and advice independent inside them. In fact of all the literature we reviewed, but one newspaper65 discussed the importance of attainable information offer clear choices to people with intellectual disabilities, including the pick to refuse treatment or engagement in self‐intendance 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 direction of catamenia being from the more than to the less knowledgeable.22

Culling conceptualizations of how communication works from a mail service‐modernist and social constructionist perspective regard linguistic communication itself as constitutive of social phenomena and identities. Culturally and historically, specific expectations of how people should behave are transmitted linguistically through the choice and coordination of elements of unlike modes of pregnant (words, picture, gestures).80 Moreover, scholars from cultural and media studies claiming the idea that81 audiences simply absorb the message of the text, instead describing text recipients every bit involved in active meaning making, bringing their ain resources to behave on estimation of a text. This suggests a direction for future research that seeks to deconstruct accessible health information texts to discern how people with intellectual disabilities, wellness professionals and biomedical institutions are constructed inside them and too map how texts are taken up, recontextualized and transformed in use.82

CONFLICTS OF INTEREST

None.

Notes

Funding information

Deborah Chinn'south contribution is the outcome of independent research arising from a post‐doctoral research fellowship supported by the National Institute for Health Research. The views expressed in this publication are those of the writer and not necessarily those of the NHS, the National Constitute for Health Research or the Department of Health. Open up access for this article was funded by King's Higher, London.

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