A link worker is paid. They come from the community. An adviser gives a view at meetings. Ask which one you are.
First, know which role you have
Research teams use several names. They are not the same job.
Three names, three roles
Adviser or panel member. You attend meetings and give a view. A few meetings a year. Paid at meeting rates.
Co-researcher. You help design or run part of the study. Paid, with agreed hours.
Link worker. You are in the team, you recruit and collect data in your community, and you contribute to analysis. Paid, with a supervisor.
All three are useful. Only the last two are posts with hours, pay and supervision. If you are asked to do the work of a link worker under the name of adviser, say so.
What you do
- You help decide what the research should ask.
- You help find people who want to take part.
- You help run interviews and group conversations.
- You help the team understand what people meant.
- You help tell people what the research found.
What you do not do
- You do not give medical advice.
- You do not decide who is well enough to take part.
- You do not speak for every person with aphasia.
- You do not work without pay.
- You do not do a task you have not been trained for.
If someone asks you for advice, you say: "I am not the right person for that. I can help you find who is."
You are not a visitor
A link worker is in the team. That means you hear about decisions before they are made, not after.
If you only hear about decisions afterwards, your role is smaller than it should be. That is worth saying out loud, early.
What the team must give you
- A written agreement. It says your hours, your pay, your tasks and who supervises you.
- Training before your first task.
- One named person you can ask for help.
- Regular supervision, including a private talk about anything that worries you.
- Payment in money, at an agreed rate.
- News of what the research found.
Two link workers are better than one
The published studies found that a pair works better than one person alone. Two link workers share the work. They also support each other.
If you are the only link worker, ask whether a second person can join. Ask early, while the budget can still change.
Why your experience matters
Research about aphasia can be designed in a way that people with aphasia cannot use. Long forms. Fast speech. Rooms with bad acoustics. Questions that need written answers.
You notice these things, because you live with them. That is the expertise you bring. It is not a small addition to the team. It is the reason the research can work.
Words used on this page
Supervision: a regular meeting with one person whose job is to help you do the work well.
Agreement: a short written document that says what you will do and what you will be paid.
Protocol: the written plan for the study, approved before the work starts.