Case Study 2: Aphasia Research Public Consultation Event

What was required?

A key area of research for the Division of Language and Communication Science involves researching aphasia. Aphasia is a communication disability that can impair speaking, understanding, reading or writing. Approximately 30 per cent of the 150,000 people in the UK who have a stroke each year will be left with aphasia.

Over the last 12 months, the aphasia team have co-ordinated their approach to recruitment, presenting to a number of stroke groups throughout London, and providing a choice of over eight research projects for people with aphasia to join.

The LCS decided to host a research event in October 2013 in response to requests from research participants for progress updates on the projects. Further, the event was designed to give something back to research participants, enable them to meet one another, facilitate a forum for feedback, and to ensure their active involvement in all stages of the research process in the LCS Division.

How did it go?

The event was attended by over 80 people, bringing together people with aphasia, stroke group co-ordinators, academics, and research project volunteers. The event began with a welcome from Head of Division, Professor Jane Marshall, who outlined current aphasia research themes including storytelling, creating new assessments, and therapy projects using new technology. Throughout the day research participants gave first-hand accounts of being involved in research, reflecting on why research matters, and the positive impact it had on their own lives.

Over lunch, participants met researchers over an interactive session, gaining further insight into projects, and trying out technology at one-to-one stations. There was also an opportunity for participants to take part in video-recorded sessions where they discussed their experience of participating in research.

The event closed with feedback from participants. This included discussion of what future research they felt would be most relevant, ideas for developing a research ‘community’ of interested participants, and the most effective ways of the keeping in touch and disseminating information.

What worked well? Any particular challenges?

The level of interest in the event was high. It was anticipated that given the difficulty this group has in accessing public transport, attendance could be difficult for many potential participants. In fact, attendance exceeded expectations, and people travelled from as far as Lincolnshire to attend, on occasion assisted by family members and close friends. For future events, it was felt that it could assist organisation if potential participants contacted the department to reserve a place in advance, and if numbers were limited.

Participants appreciated the chance to find out more about research projects, and meet the researchers. Researchers gained valuable feedback, including on preferred ways of keeping in touch with current and future research participants.

Possibly the most moving element of the event was the positive feedback from participants. The following is a quote from a participant who spoke at the event about her experience of taking part in research:

‘I did a research project on reading… I felt like someone was teaching me to read again. It didn’t feel like research, it felt like a big gift.’

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