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

Abstract

BackgroundThe proliferation of “accessible information” for people with intellectual disabilities in UK health care has accelerated in recent years, underpinned by policy guidance alongside the recent introduction of mandatory standards. However, questions have been raised as to the impact of such resources as a means of enhancing involvement in health care and addressing health inequalities.ObjectiveTo review and synthesize the evidence from different approaches used to evaluate the impact of accessible information for people with intellectual disabilities using a meta‐narrative approach.Search strategyLiterature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods.Inclusion criteriaIncluded English language papers published before December 2015 described the design and evaluation of written information adapted for adults with intellectual disabilities.Data extraction and synthesisWe 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 resultsThe 42 included papers in the five groupings occupied diverse positions on (i) public communication vs individualized materials, (ii) literacy as decontextualized skills vs social practices and (iii) the expertise of patients vs professionals. There was limited evidence for the impact of accessible health information, notwithstanding the potential benefits associated with their creation.ConclusionsIndividually tailored information is more likely to meet personalized health information needs for people with intellectual disabilities. The emergence of different social formations in the creation of accessible information has potential for advancing engagement of diverse groups.

“Tell me what they do to my body”: A survey to find out what information people with learning disabilities want with their medications

“…Further, accessible communication depends on the individual; easy‐read information is not always accessible to all people with learning disabilities and it is important to take individual needs into account. Some easy‐read material may leave out important details in the quest for simplicity, such as contraindications or the patient's right to opt out of treatment (Chinn & Homeyard, ). Alternatives to easy‐read leaflets are visual or audio formats; however, some of our participants reported that they found it difficult to remember verbal information.…”

“…should be combined with verbal information in a consultation that is tailored to the person. Adapted health information has a better chance of making an impact when it is tailored to an individual's individual requirements (Chinn & Homeyard, ). Further, it is important that the resources should be co‐produced with people with learning disabilities who are more likely to have experienced the insufficiency of health information as described in this study and the wider literature (Ward & Townsley, ).…”

“…should be combined with verbal information in a consultation that is tailored to the person. Adapted health information has a better chance of making an impact when it is tailored to an individual's individual requirements (Chinn & Homeyard, 2016).…”

Processus d’une recherche-développement réalisée avec des parties prenantes pour favoriser l’accès à l’information sur les services qu’ils reçoivent

“…L'importance de donner de l'information sur les services a été relevée dans de nombreuses études (Chinn & Homeyard, 2017;King, Williams & Hahn-Goldberg, 2017;Mitchell & Sloper, 2002;Samuel, Hobden, Leroy & Lacey, 2012). Être informé correspond à un besoin identifié par les parents qui reçoivent des services pour leur enfant (Leblanc, Robert & Boyer, 2013).…”

Ensuring meaningful access to easy‐to‐read information: A case study

“…Whilst the importance for people with intellectual disability to have access to information is acknowledged in the research literature, its impact and usefulness are also questioned. Chinn and Homeyard’s () meta‐review refers to questions about its impact in meeting ‘personalized health information needs for people with intellectual disability’ (p. 1,189), a question that is also raised by Goodwin, Mason, Williams, and Townsley () regarding information about research. Likewise, Anderson et al () note that the production of easy‐to‐read information is not equalled by evidence that supports the effectiveness of its use.…”