It is a dedicated body of people with aphasia who can support your research as advisors.
The Aphasia Research User Group (ARUG) can enhance the relevance, quality and success of your projects
It is well established that consultation with people with first-hand experience of a condition, greatly enhances the quality, relevance and effectiveness of related research2. People with aphasia are often excluded from relevant research by the nature of the research tools that are employed1. Best practice in research into stroke, aphasia and related non-clinical topics, includes involvement of people with aphasia at every level1,4.
Creating an advisory group when communication disorder is a primary, or important, consideration for the research topic, can be challenging and time consuming for researchers.1,4 ARUG is an existing group that can provide this service effectively and efficiently, or signpost you to alternative advisory groups when these are better suited to your project.
By accessing high quality advice from ARUG, you will ensure that your research topic is optimally shaped, from conception to participation and reporting. ARUG will help with transparency of documentation and inclusiveness for all participants, and maximise recruitment. ARUG can give researchers insights into communicating effectively with people with aphasia, ensure that you use materials that will penetrate communication barriers to the competent person beyond, and help your research project to include as representative a population as possible.
The ARUG service:
For those looking for a group to consult about aphasia related research, ARUG meets NIHR INVOLVE1,3 guidelines for best practice. What expertise do members of ARUG bring?
- have personal experience of aphasia
- are a representative group
- have research awareness
- are trained in principles of research
- understand the role of research advisor
- can indicate costs to build into your project application
- are able to evaluate and record their impact
- can provide a professional and committed service for the duration of the project
- a single point of contact
- a suitable venue
- a person to arrange meetings
- aphasia facilitators available
- clear guidelines for you to make consultation effective
- aphasia friendly support materials
- sign posting to specialist aphasia advice
- training for research staff
- enhanced participant recruitment via links to networks
How much will the service cost?
ARUG has a costed menu of levels of consultation ranging from free discussion of preliminary ideas to involvement in disseminating outcome.
If you would like to find out more please contact ARUG to arrange a discussion of your needs.
ARUG c/o firstname.lastname@example.org
Tel (0) 44 191 2088550
For stroke research unrelated to aphasia, a North East research user group can be found at www.crn.nihr.ac.uk/nencumbria
¹ Swinburn, K. et al 2007 Including people with communication disability in stroke research and consultation Connect London
² Staley, K. 2009 Exploring Impact: public involvement in NHS, public health, and social care research.Â INVOLVE Eastleigh
³ INVOLVE 2012 Briefing notes for researchers: involving the public in NHS, public health and social care research. INVOLVE Eastleigh http://www.invo.org.uk
4 Pearl, G. 2014 Engaging with people who have aphasia. A set of resources for stroke researchers. NIHR CRN: Stroke
Researchers’ feedback on the value of consulting ARUG
From Julie Morris, Reader in Speech and Language Sciences
ARUG's involvement in the Reading Comprehension in Aphasia project
ARUG made significant contributions to the above project, which was funded by the Stroke Association and took place at Newcastle University.
ARUG were involved at early stages, considering whether the project was interesting and had relevance. ARUG particularly shaped one of the research tools developed in the project, a questionnaire designed to be used with people with aphasia to find out their views about their reading. Items in the questionnaire were initially based on findings from the literature, but ARUG shaped these significantly, influencing what items were included, how items were worded and how the final version was displayed (for example what images were used to support people with aphasia). ARUG helped the researchers consider how to introduce the questionnaire, how long it might take and how to make it acceptable to people who have reading difficulties.
The researchers also benefited from the involvement of ARUG and this will inform how they take forward consultation in future. Their involvement showed both how important yet how complex consultation of this nature is.
From Fiona Menger, Stroke Association Research Fellow
ARUG were involved at three stages over 5 years in a research project around computer access for people with aphasia.
The design of my pilot study was discussed with ARUG. A person with aphasia went through the accessible questionnaire with me and commented on aspects of design. These comments were incorporated into the version which will be used for this study.
Design of the research
The project was taken to members of ARUG and one carer representative was also present. Objectives and design of the study were explained in an accessible way and comments/suggestions were welcomed. Elements of the design and documentation have been changed as a result of the following suggestions:
1. To be flexible regarding treatment intensity, as some people with aphasia may not be able to sustain intensive input.
2. To ensure participants felt under no obligation to share passwords with researchers.
3. To be sensitive to possible feelings about inadequacy regarding technology amongst supporters/carers, and amongst all other participants.
4. To change some of the pictures on leaflets to reflect that younger adults may also experience aphasia.
A run-through of novel assessments for my intervention studies with one couple led to redesign of some of the questions in the assessment and a change of some pictures used in aphasia friendly materials.
From Christos Salis, Lecturer in Speech & Language Sciences
I consulted ARUG at the very early stages of a funding bid to the Stroke Association. The purpose of the bid was to design a new test of short-term memory for persons affected by stroke and aphasia. ARUG members were keen to communicate their views about specific aspects of the project, in particular, on how to make the research tasks as accessible as
possible for people with aphasia. They also highlighted their perceived memory difficulties. Their practical and specific suggestions helped the final shape of the bid.
From Frauke Buerk, Research Associate, Speech and Language Therapist
Feedback for ARUG as a researcher
I used ARUG in the developmental stages of my research grant application. My colleagues and I were in the process of developing the research idea and the design of the project when we sought advice from the ARUG. It was very insightful and useful to discuss the general research idea. It helped my colleagues and I to focus on the actual research questions and whether this reflected patients’ needs and how it may benefit the person with aphasia. The discussions with the ARUG also helped to inform feasibility of the study. My involvement with the ARUG contributed to a successful grant application and led to a 3-year project funded by the NIHR.
At a slightly later stage in the research project the ARUG provided valuable feedback when we were looking at outcome measures of quality of life. It highlighted the importance of comprehension issues to be considered in those outcome measures which facilitated our decision process.