Making research summaries accessible to people with aphasia following stroke: an international co-design study
Résumé
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 sam-
ple 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 itera-
tively 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 fund-
ing 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 sum-
maries 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.