At our Centre, the PLORAS (Predicting Language Outcomes and Recovery After Stroke) group are working with people with aphasia to develop tools to predict a person’s projected language recovery following stroke.
Aphasia is a language disorder which can occur after brain injury, such as stroke. People with aphasia can have difficulty with speaking, understanding, reading, and writing. The acute onset of aphasia following a stroke can be a traumatic and life-changing experience for patients and relatives. The inevitable questions asked of many speech and language therapists, doctors and other health professionals at this time are, “Will I/my relative recover? How much will I/my relative) recover? How long will this take?”.
As part of their work to understand the kind of information that people would like to receive after a stroke, the PLORAS research team invited some people with aphasia to tell them about their experiences on video. The videos enabled valuable two way dialogue between the researchers and participants and provided important messages for the research project. The videos were also shared at the 2019 UCL World Stroke Day Forum to an audience of stroke survivors, their family members and carers, in order to share more widely and provoke further conversation about the delivery of language outcome predictions. Combined with previous information gathered from focus groups with health professionals and upcoming work on delivering healthcare prognoses, the capturing and sharing of these conversations is an important step in moving the research forwards.
Including the perspectives of people with aphasia in the research is crucial and highly valued by the team. Their study uses self-report measures alongside other assessments to examine language at different time points post-stroke. The self-report measure is essential, as only the participants themselves can provide their perspective on their pre and post-stroke communication. Through the Centre’s Public Engagement Grant Scheme, the PLORAS team acquired funding to run discussion groups examining this measure with participants with aphasia. The work aims to increase the accessibility of the measure to people with aphasia, and improve researchers’ interpretations of the data gathered using the assessment through better understanding of participant perspectives. The team also has plans to develop a digital advisory panel of people with aphasia. It is their intention that the panel will continue to advise them on future research issues.