Why involve people with aphasia in designing and carrying out this research?
Working collaboratively with people with aphasia in designing and conducting the study has been a key part of this project. As a researcher, I offer research skills and knowledge about particular interventions. I cannot, however, know what it is like to live with aphasia or have a stroke. I have a strong belief in the value of working collaboratively: combining my skills as a researcher with other’s knowledge about life after stroke. I hope that together we can make sure this research project stays close to the priorities and concerns of people with aphasia.
People with aphasia: involved when applying for funding
Prior to receiving the funding from the Stroke Association, we gained a small grant from the Research Design Service Enabling Involvement Fund to hold a one off consultation workshop with people with aphasia. This shaped key decisions. For example, it influenced our choice of study design, it gave us direction on the importance of including people with severe aphasia, and it shaped our decision to focus on support in the longer term post stroke. The group also had various ideas about ways to recruit potential participants.
Forming the SOFIA Aphasia Advisory Group
I am very grateful to our wonderful Aphasia Advisory Group! Four people with aphasia and one carer have taken part in four workshops (February to May 2017). Thanks too to Dr Abi Roper, who helped to facilitate the groups. There are a further four workshops planned.
What has changed as a result of input from the Aphasia Advisory Group?
Here is a list of some of the things that they have influenced in the project:
- We discussed how best to present project information so that it easy to understand for potential participants.
- We talked about recruitment of potential participants.
- They influenced our eligibility criteria.
- We discussed how best to present the questionnaires so that they are accessible to people with aphasia.
- Their views influenced our decision about which questionnaire should be the project’s ‘primary outcome measure’ (results from the primary outcome measure are reported first when the project is written up).
- We discussed which measure to use to assess low mood.
- They gave advice on the content of the in-depth interviews (when we interview participants about how they found taking part in the project).
- We explored how to make the participant experience as positive and humane as possible – so practical steps that we, as researchers, can take during the project that will help participants feel valued and encouraged.
- We discussed the therapy approach in the context of living with aphasia.
As well as working hard we also enjoyed lunch together each time we met up. It turned out take-out pizza was particularly popular!
Helping to train the clinicians
Some members of the group were also involved in training the clinicians. We are very grateful! The feedback from the clinicians was that this was a helpful part of their training and they appreciated the chance to explore the therapy in a ‘safe’ space and receive feedback.
How will the Aphasia Advisory Group be involved in the remaining workshops?
We plan to ask them for advice about issues that arise during the trial. We will also involve them in interpreting findings of the research. For example, we will discuss themes emerging from the qualitative data. Since the group includes mathematicians, some members are keen that we provide some training in research methods so that they understand the statistical methods we are using. The group will also be involved in advising us on dissemination strategies so that we are able to reach the wider stroke community effectively.
I was anticipating that the workshops would be useful: they were. What, perhaps, has come as more of a surprise is how supported I have felt by the group. They have often given me a real boost and reminded me why I am doing the research.
And a final comment – back in July 2017 I attended my first NHS Research Ethics Committee. The next available committee meeting was due to be held in Brighton. I tried to think of this as a nice trip to the seaside but without much success. It was a windy, cold walk to find the right NHS building. I remember how lonely the waiting seemed, and can still picture the quiet, yellow corridor with its single metal chair. When I was finally called into the room there were maybe 10 people crowded around a table covered in piles of papers and lap tops. It was a huge relief when almost the first thing they said was: “We are really impressed with how you’ve involved service users.” From that moment on I felt like they were on my side and helpful. We talked a fair amount about the Aphasia Advisory Group and all they had inputted – so thank you to the Brighton REC and to everyone in the Advisory Group!