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

BACKGROUND: The 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. OBJECTIVE: To 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 STRATEGY: Literature searches were iterative and incorporated formal databases, grey literature and hand searches alongside more intuitive and opportunistic methods. INCLUSION CRITERIA: Included English language papers published before December 2015 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. MAIN RESULTS: The 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. CONCLUSIONS: Individually 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.