Involving people with communication difficulties in research: our experience with people who have aphasia as a result of stroke
2006 Conference
People with aphasia have communication difficulties. They have problems with understanding what is said and putting together what they want to say.
Our programme of stroke research looks at aphasia. Local people with aphasia from ‘Speakability’ have got involved with different projects in different ways.
‘Speakability’ members helped produce an ‘aphasia friendly’ consent form that we have used in our research projects. Their own life experiences made them keen to take part in research into depression. They chose the way they wanted to take part and really helped make the project happen.
We have meetings with ‘Speakability’ members so we can get their advice on our research. This helps us keep our research meaningful to people with aphasia.
It was important that we could help with communication to allow people with aphasia to be involved. As the presenter, Ellen Townend, had not worked with people who have aphasia before she needed to be trained first and she will talk about this.
We used ‘communication supports’ such as extra time, pictures, gestures and short spoken or written phrases.
‘Speakability’ members have been very helpful to us and our research. People with aphasia can get involved and benefit research.
Authors
Townend ~ Ellen
Ellen Townend is a health psychologist. Her PhD looked at emotional problems following stroke amongst individuals who did not have communication difficulties. After her PhD she started working on the Stroke Programme at the Nursing Midwifery and Allied Health Professions Research Unit which looks at communication difficulties following stroke. Her research now looks at emotional difficulties and communication difficulties following stroke.
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