Easy Information about research: getting the message out to people with learning disabilities

Abstract

Accessible Summary• People with learning disabilities have a right to be given easy information about research which is about their lives. At the Norah Fry Research Centre, we have tried to do that.• We have employed a person with learning disabilities Julian Goodwin. In this paper, he looks back at the importance of the work he has done.• We think about the questions and difficulties in making information about research 'easy'. For instance different people with learning disabilities need different types of information.• Easy information is changing, and we need to look forward to better ways of getting research messages out to people with learning disabilities. SummaryThis paper discusses the provision of easy information about research to people with learning disabilities, their families and supporters. We explore some different ways we have used over the past 25 years, to make sure that research has the greatest impact both in the UK and abroad. We discuss first the process of providing easyread versions of research at the Norah Fry Research Centre, where two of us, Goodwin and Townsley, worked on a series called Plain Facts funded by the Joseph Rowntree Foundation. We have always used different media such as audio, but more recently, have started to use video as a way of getting information out to people with learning disabilities. We aim to present the 'easy information' work done at Norah Fry, to reflect on its impact, and set it within the context of the move towards accessible information more generally, questioning some of the premises about 'impact' on which accessible information is based.

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

“…In four cases, authors were part of independent research teams who had been commissioned to review a specific resource . Participants were in many cases associated with self‐advocacy organizations or those that worked with people with intellectual disabilities as coresearchers …”

“…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 role in designing accessible resources and also having control over when and how the resources were used was emphasized.…”

“…their opinions mean something”: Care staff's attitudes to health research involving people with intellectual disabilities

“…The care staff in this study suggested that it would be helpful to tailor information to the differing needs of potential participants. Although researchers, aiming to recruit people with intellectual disabilities, often develop and use accessible materials and approaches (Durand et al., ; Goodwin, Mason, Williams, & Townsley, ; Kidney & McDonald, ; Lewis, ,b), the present study emphasises the importance of considering the needs of the individual and using the most appropriate format of information, rather than using the same study materials with all potential participants. This may require discussing the project with people from the proposed patient/carer population, prior to the ethics submission, to plan appropriate research material and recruitment of potential participants.…”

Éléments clés, enjeux et retombées d’une démarche de rédaction inclusive réalisée avec des adultes ayant de très faibles compétences en littératie

“…En effet, l'accès à l'information est souvent utopique dans une société où l'information est disponible principalement sous forme de matériel écrit et imprimé (Goodwin, Mason, Williams et Townsley, 2015). Cette réalité peut même contribuer à l'exclusion sociale de ces personnes.…”