Sharing research findings on aphasia study with participants
UCL researchers invited participants to a forum, sharing their findings on an aphasia study, in an effort to enhance research credibility and make participants feel more a part of the process.
22 August 2018
In March this year, Victoria Fleming, Research Assistant at the Institute of Neurology (IoN), invited study participants to an event to share research findings on a new digital therapy that can help people who have aphasia recover their language after stroke.
Around a third of people who have a stroke experience aphasia, a speech and language disorder which can affect speaking, understanding, reading and writing. Difficulty communicating effectively can negatively impact quality of life, and so finding new ways to improve individuals’ language outcomes is a priority.
The research – ‘Listen-In: Developing and testing a therapy application for patients with speech comprehension deficits after stroke’ – that Victoria and her team conducted involved a small-scale trial investigating a new digital therapy application, ‘Listen-In,’ for those experiencing aphasia caused by stroke.
A novel component of the app was ‘gamification’, which involved adding gaming elements to maximise motivation and engagement with the therapy program itself.
Thirty-six patients enrolled in the trial over a period of two years, and all were invited – including their family and friends – to the public engagement event following completion of the trial.
“The purpose of the event was to disseminate our research findings and generate discussion and feedback about the trial. A secondary purpose was to raise awareness of the work we are doing and showcase other upcoming projects,” said Victoria.
The patients involved in Victoria’s study had particular trouble with understanding speech, therefore a challenge of the event was being able to communicate at a level suitable for people with differing language abilities.
To address this, the researchers used many different strategies on the day; visual images and animations were used on PowerPoint slides; talks were kept short, as patients can fatigue quickly; content was simple and concise; and stickers were used for feedback charts instead of language based questionnaires.
Victoria and the research team were able to talk one-to-one with participants, friends and relatives. The forum gave them the opportunity to answer specific questions about the study and elaborate further when needed, enabling the researchers to communicate effectively with their target audience.
Participants with aphasia consistently commented that they were able to follow and understand the main content of the talk. Many also reported that they would be interested in hearing about future studies.
“Participants are a key part of the research community, and holding this event meant we could bring everyone together. It allows us to share our side of the research journey, and give out much needed information about how research in aphasia can be carried out.
“Importantly it also means we get to hear about our participants’ experience of research, and how we can make things better in the future,” she added.
Given the success of this event Victoria and her colleagues in the Neurotherapeutics Lab are looking into holding an annual research open-day where researchers and patients can come together to discuss new research opportunities.
- Victoria Fleming
- Institute of Neurology
- Neurotherapeutics Group @ Institute of Cognitive Neuroscience