An investigation of the accessible information process for adults with learning disabilities

Background: The importance of accessible information within modern learning disability services and the wider society cannot be underestimated. This research aimed to explore both the production and implementation of accessible information for adults with learning disabilities. A novel approach to the accessible information ‘process’ was adopted; resulting in a movement away from specific resource focused research to a process focused approach. The research was conducted in three stages: a comprehensive review of the literature; a qualitative scoping exercise which investigated the firsthand experience of producing and implementing accessible information; and a qualitative investigation of the dynamic behaviours involved in the implementation of health related accessible information at a clinical level. Methodology: The purpose of the first stage was to comprehensively review and critically appraise the literature relating to accessible information, learning disabilities and symbolic development. This was achieved through a detailed search of electronic databases and hand-searches of the grey literature. For the scoping exercise, eighteen participants were recruited from four distinct sampling groups: adults with learning disabilities; staff from a specialist learning disability service; mainstream NHS and local authority staff; and speech and language therapists. Each participant took part in either a semi- structured focus group or interview. Eight participants (four community learning disability nurses and four of their learning disabled clients) took part in a non- participatory observational study. Conversational analysis was used to explore the sequence of both the vocal and non-vocal behaviours. Findings: The literature review revealed that there was a dearth of high quality primary research that has investigated accessible information within the field of learning disabilities. Of the seven relevant primary research studies, two quantitative studies measured the effectiveness of specific accessible resources through pre and post comprehension scores. Three mixed method studies, which were generally poorly reported, described a qualitative process of developing and/or appraising a specific accessible resource or guidelines as well as a quantitative element to investigate its effectiveness. Two qualitative studies attempted to answer broader questions relating to the human dimensions and experiences of accessible information. One explored the use of accessible information with a wider population and the other explored issues relating to the implementation of a specific accessible resource. These findings highlighted the largely resource-focused research and failed to report on accessible information as a process which involves the implementation of such resources. A Framework approach to thematic analysis was used to analyse the data collected from the scoping exercise which led to three main classifications: the ideology of accessible information, accessible information practice and the outcomes of accessible information. Firsthand experience varied across the stakeholders, highlighting differences in the operationalisation of national policies and legislation. The notion of accessible information being relevant to more than just people with learning disabilities was introduced. The data supported the approach of accessible information as a process, although the practice of implementing accessible resources appeared less advanced. Three main clusters of episodes were identified through the conversational analysis of the non-participatory observations. Cluster one related to providing the accessible health information; cluster two to topic development; and cluster three to consent. The findings revealed numerous intricacies in the vocal and non-vocal exchange. The use of an accessible resource appeared to promote joint attention; communicative style appeared influenced by the primary and secondary reported outcomes of the resource; practical considerations of the topic development were evident; and contradictory goals in the decision making process were highlighted. The notion of the implementation of accessible information as a dynamic process was confirmed. Conclusions: The combination of the chosen methodology and subsequent findings generated a novel approach to accessible information within the field of learning disability. In conceptualising accessible information as a process, with a particular focus on the implementation phase, the findings illustrated that it was the implementation phase that allowed for personalisation in providing and developing the information, which was dependent on the intersubjectivity of the communication partner and the person with learning disabilities. This in turn supported the accessibility of the information. These findings would not have been apparent without the movement away from specific resource focused research to a process focused approach.