Aphasia makes some kinds of communication hard. Research can be made easier. That is your job on the team.
What aphasia is
Aphasia is a difficulty with language. It usually comes after a stroke.
It can affect speaking, understanding, reading and writing. It does not affect intelligence. A person with aphasia knows what they want to say. Getting it out, or taking it in, is the hard part.
Every person with aphasia is different. Some find reading hard. Some find numbers hard. Some find noise makes it worse. Some find it easier with a pen and paper. Do not guess. Ask.
Four things that make research easier
1. Time
Give more time than you think. Do not finish sentences. Do not fill silence. If a session takes twice as long, that is the plan, not a failure.
2. Choice of how to answer
A person might speak, write, point, gesture, draw, use a communication app, or ask a trusted person to help. All of these are answers. The method does not need to be the same for everyone.
3. Short, plain information
Short sentences. One idea in each. Bigger text. Pictures where they help. A summary at the top, so the person knows what the page is about before they read the detail.
4. A quiet and familiar place
Background noise drains attention. Meet where the person is comfortable. Allow someone to bring a person they trust.
Checking that someone understands
Do not ask "do you understand?" Most people say yes. It is polite, and it is easier.
Ask the person to tell you, in their own way, what the study is asking them to do. If the answer is muddled, explain again in different words. That is not a failure. It is the job.
Meetings on a screen
Much of this work happens online, on Teams or Zoom. That changes what you need.
Before the meeting
- Ask for the papers two working days ahead. Reading takes time, and you are entitled to it.
- Ask for a short summary of each paper, in plain words. That is a reasonable request.
- Test your link and your microphone the day before, not five minutes before.
- Ask whether the meeting will be recorded, and who will see the recording.
During the meeting
- Turn on live captions. In Teams, use the three dots and choose Turn on live captions. In Zoom, choose Show captions.
- Ask people to speak one at a time. Fast, overlapping speech is the hardest thing to follow.
- Use the chat box if speaking is hard. What you type counts as a contribution.
- Ask for a break in a long meeting. Ninety minutes without a break is too long.
- It is fine to say: "Can you say that again, more slowly?" You are not slowing the meeting. You are keeping it usable.
After the meeting
- Ask for the actions in writing, in plain words, with who is doing what.
- If you did not follow a decision, ask. Not understanding a decision is a fault in the meeting, not in you.
Consent
Consent means the person says yes to taking part. Four things must be true.
- They understand what the study is and what they will do.
- They can decide, with help if they need it.
- Nobody is pushing them. Saying no is fine, and it will not affect their care.
- The yes is written down, in a way the study has approved.
Consent with aphasia, in practice
- Use an aphasia-friendly information sheet. Short lines, big text, pictures, and a summary at the top.
- Read it aloud, or use a reader. Ask the person what they want.
- Offer to do it over two visits. A big decision is easier in two parts.
- Record consent in the way the study has approved. This might be a signature, a witnessed signature, or a recording.
- If the person cannot decide, even with support, stop. That decision is not yours. Talk to the study lead, who must follow the study's approved process.
The sentence you must say every time
Before you start, say what stays private and what does not.
"What you tell me stays with the research team. There is one exception. If you tell me that someone is being hurt, or that you plan to hurt yourself or someone else, I have to tell the person responsible for safety. I would tell you first."
Say it slowly. Check it was understood. Write down that you said it.
Communication is not a barrier to being a good researcher
Some people will assume that a person with aphasia cannot be a link worker. They are wrong.
You may need adjustments: more time, written questions in advance, an assistant, a quiet room, a different way of recording your notes. Adjustments are normal. Ask for what you need, in writing, before the work starts.
Words used on this page
Consent: saying yes to take part, after understanding what it means.
Adjustment: a change to the way the work is done, so that a person can do it.
Information sheet: the paper that explains the study to a person who might take part.