Platform Presentation The Joint Annual Meeting of the Stroke Society of Australasia (SSA) and Smartstrokes 2023

Making Research Summaries Accessible to People with Aphasia Following Stroke: An International Co-design Study. (#30)

Sam Harvey 1 2 , Bonnie Cheng 1 2 , Ciara Shiggins 1 2 3 , Brooke Ryan 4 , Tanya Rose 5 , Rebecca Palmer 6 , Bridget Burton 1 2 , Peter Worthy 1 2 , Ryan Deslandes 1 2 , Anthony Pak-Hin Kong 7 8 , Caterina Breitenstein 9 , Eva Soroli 10 , Manaswita Dutta 11 , Silvia Martínez Ferreiro 12 , Reem Alyahya 13 , Analisa Pais 14 , Ray Shinton 15 , Amy Jennings 15 , Janis Pernworth 15 , Sarah J Wallace 1 2
  1. Queensland Aphasia Research Centre, The University of Queensland, Herston, Queensland, Australia
  2. Surgical, Treatment and Rehabilitation Service Education and Research Alliance, The University of Queensland and Metro North Hospital and Health Service, Herston, QLD, Australia
  3. Centre of Research Excellence in Aphasia Recovery and Rehabilitation, Melbourne, Australia
  4. Curtin School of Allied Health, Curtin University, Perth, WA, Australia
  5. School of Health and Rehabilitation Sciences, The University of Queensland, St Lucia, QLD, Australia
  6. University of Sheffield, Sheffield, United Kingdom
  7. Academic Unit of Human Communication, Development, and Information Sciences, The University of Hong Kong, Hong Kong
  8. Aphasia Research and Therapy (ART) Laboratory, The University of Hong Kong, Hong Kong
  9. Department of Neurology with Institute of Translational Neurology, University of Muenster, Muenster, Germany
  10. University of Lille, Lille, France
  11. Department of Communication Disorders and Sciences, Rush University, Chicago, USA
  12. Gerontology and Geriatrics Research Group, University of A Coruña, A Coruña, Spain
  13. City University of London, London, United Kingdom
  14. University of Essex, Colchester, United Kingdom
  15. Consumer Representative, Queensland Aphasia Research Centre, Brisbane, Australia

Background: 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).

Aims: 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.

Methods: 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.

Results: 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.

Conclusion: 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.