You have aphasia. You are also in the research team. Both are true. Sometimes they disagree.
Two kinds of knowledge
You know what it is like to live with aphasia. The researchers know how to design and run a study.
Neither kind of knowledge is better. The programme needs both. If one is missing, the research is weaker.
Where they disagree
Three common situations
The team wants things fast. Trust and access take time. Say what is realistic, and let the team change the plan rather than you promising what cannot happen.
The team wants every person asked in the same way. That makes the data easier to compare. It can also exclude people who need another way. Ask whether the method can be adapted, and record the change.
People in the community are angry about research. That anger has a history. Do not smooth it over. Pass it on, and say where it comes from.
What you can change, and what you cannot
Ask this in your first week, and write down the answer.
- What can I decide?
- What can I advise on?
- What am I only told about?
- Who do I ask when I want something changed?
If you cannot change the research question, say so plainly. Do not let the team call the role co-production if the question was fixed before you arrived.
Bringing a problem to the team
You will notice things the team has missed. Bring them early, in a specific form.
A form of words that works
"I think this will not work for people with aphasia, because [what you saw]. Two options are: [option one], or [option two]. Can we decide before we send it out?"
That is specific. It offers a solution. It asks for a decision, not an argument.
Boundaries
- You are not available at all hours. Give the study's contact, not your personal number, unless you agree otherwise.
- You do not share what a participant said with their family, their employer or their therapist.
- You do not give clinical advice.
- You do not use the role to settle an argument in the community.
Saying no
You are allowed to say no to a task. It protects you, and it protects the study.
"I am not trained to do that. I can do [what you can do], or we can move that task to someone trained."
Name the limit. Offer what you can do. Put the decision where it belongs.
One more thing
People may ask you to speak for everyone with aphasia. You cannot, and you do not have to.
Say: "I can tell you what I have heard from the people I know, and I can tell you who else you need to ask."