Making research summaries accessible to people with aphasia following stroke: An international co-design study

Abstract

<p><strong>Background:</strong> To ensure that research is disseminated widely, agencies such as the National Health and Medical Research Council (NHMRC) require that research outputs be accessible to consumers, including those with communication disabilities such as aphasia (NHMRC, 2016).</p><p><strong>Aims: </strong>1) To establish the preferences of people with aphasia regarding content and format of research summaries. 2) To co-design technology that supports communication-accessible research reporting.</p><p><strong>Methods</strong>: A consumer and community involvement process guided the conceptualisation and planning of this project. An online, multi-modal, multi-lingual international survey was conducted with a convenience sample of 70 people with aphasia. Descriptive statistics were calculated, and qualitative content analysis was used to establish priorities for research summary content. A series of co-design workshops were held to iteratively design and develop a technology-based solution to the production of communication-accessible research summaries.</p><p><strong>Results: </strong>An international online forum of >30 people with aphasia confirmed the need for improved access to information about stroke and aphasia research. Attendees discussed how and why they would use a research summary and identified key content areas. This informed development of an international survey completed by 70 people with aphasia (15 countries, 11 languages). Respondents indicated that the research title, rationale, design, aims, and results, should always be included in a research summary, whereas limitations, location, and funding source are less important. Five people living with aphasia attended three online workshops and iteratively co-designed an online template and searchable database. This technology-based solution supports information access and scientific literacy by generating research summaries that reflect individual content preferences and communication strengths.</p><p><strong>Conclusion:</strong> We present a co-developed template and searchable web-based database for communication-accessible research reporting. Researchers in the field of stroke who are committed to disseminating their research findings to all stakeholders should use and promote this resource.</p>