User involvement in the research
Introduction to the Research User Group (RUG)
Traditionally people with aphasia and/or dysarthria following stroke have been excluded from research due to their communication difficulties. Although involving people who have difficulties communicating in research is challenging, it is not impossible. In order to include all relevant patient groups the ACT NoW study elicited the assistance and guidance of The Research User Group (RUG) – the service user group associated with the ACT NoW study were specifically recruited to work on the project. There are between 8 and 10 members at any one time. All have aphasia and/or dysarthria following stroke. There are also carers in the group. Members vary in age, background, range and type of current communication difficulties.
The group meets regularly to act as advisors to the research. During the feasibility study they were very influential in the design of patient information and consent materials which helped maximise recruitment. They have given practical insight into ways to facilitate communication for varying levels of severity. As such, we have developed 3 different levels of patient information booklets to accommodate a wide spectrum of communication disorders. Each of these 3 information booklets has an associated audio tape which can be used to deliver the information in a different modality. Finally there are DVDs and Videos which can also be used to support the information procedure:
RUG-developed patient information materials. Patients and Participants (or other interested parties) can view the content of the information booklets by accessing the 'Patients and Participants' pages of the website or clicking here. If you would like more information on these materials or would like copies, please contact us.
Through group discussions and role play the RUG helped to develop qualitative methods that are accessible and facilitative to interviewees with a range of communication impairments following stroke. The group also plays an essential role with research staff on the project. They have helped during staff recruitment and in training research staff in effective communication.
If you are interested in how we went about involving users in research, you can read our policy and procedure for involving users in research by clicking here. This document is available in PDF Format.
To access an aphasia friendly version of this site, with larger text and easier language, please click here
