As 2022 comes to an end, we wanted to take a moment to look back.
And we wanted to give a round of applause to the 37 fabulous participants who took part in our discussion groups.
The problem
More than 350,000 people have aphasia in the UK.
Aphasia is a communication disability.
Aphasia can have a big impact on someone’s life.
It can be hard for family members, too.
We know that families want to have meaningful and deep conversations.
Speech therapy can help people communicate better, even if someone has been living with aphasia for a long time.
A type of therapy called communication partner training has been shown to help families communicate better.
However, at the moment, only a small number of people are offered communication partner training.
The training needs to be clear, effective and easy to access, so that more speech therapists can offer it.
the APT project
This new research study will address this problem.
The APT team is making a new therapy called Aphasia Partnership Training.
This training is for people with aphasia and a family member to do together.
APT aims to help families communicate better.
We hope that one day, APT will be offered on the NHS across the UK.
We are listening
From the start, we wanted to listen to people who might receive this training in the future.
People with aphasia and family members are the experts.
They live with aphasia every day.
We wanted their views to shape the new training.
We thought carefully about how to involve people in the best possible way.
And of course, we wanted to make sure that everyone had a good experience!
How did we find people to take part?
We used lots of different ways to find people.
We went online so people could contact us:
- We made a website
- We made a Twitter account
- We made a Facebook page
We posted adverts in several newsletters.
We made posters.
We emailed lots of Speech and Language Therapists in London, Derbyshire and Yorkshire.
We contacted lots of community groups by email and through social media.
We visited several groups. We gave a short talk and let people know how to get involved.
Making our project inclusive
Sometimes, research criteria is strict. This stops a lot of people from taking part.
We wanted to do things differently.
If someone was interested, we would check if the study was right for them.
If someone had another condition on top of aphasia (e.g. Parkinson’s disease or dementia), we asked how much of a problem it was:
“A little or a lot?”
If they said “a little”, we did not turn them away.
If someone had depression, we talked about what we would do in the discussion groups.
If they felt able to take part, we did not turn them away.
We welcomed people with mild and moderate aphasia.
We welcomed family members of people with severe aphasia.
If the study was right for them AND they were still interested in taking part, we talked through more information together.
We made a video to share information with people with moderate aphasia.
Then, we gave people a few days to think about it.
There was no pressure to decide to take part there and then.
If they were still interested in taking part, we talked through the consent form together.
If they were happy with the consent form, they signed their name and hey presto, they became a participant!
Who took part?
Derbyshire – North England
· 11 people with aphasia
· 8 family members
London – South England
· 13 people with aphasia
· 5 family members
10 people with aphasia and 8 family members were new to research.
Making people comfortable
We gave people useful information about how to get to the group.
We arranged taxis for people who could not drive or take public transport.
We sent reminders the day before.
We kept the groups small.
There were no more than 6 participants in each group.
We welcomed people with hot drinks.
At the start, we made time for people to chat and get to know each other.
We put on name labels. This way, we did not need to worry about forgetting anyone’s name!
There were at least 2 (two) qualified and trained Speech Therapists there to lead the group and offer support.
The therapists were trained in safeguarding.
If someone got upset or needed more support, the therapists knew what to do.
We know that fatigue is an issue for people after stroke.
We took breaks.
We enjoyed food together.
We catered for everyone. We asked about food allergies, preferences, and swallowing difficulties.
What did our participants do?
We invited people to come to 2 (two) discussion groups.
In the 1st discussion group, we asked:
What do you want to be in this new therapy?
We looked at one thing at a time.
Participants were asked, “Do this work for you?” – Yes, no, or maybe.
Then they decided what was most important to them.
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In the 2nd discussion group, we asked:
What improvements/changes would you hope for, after receiving this therapy?
Participants had time to think of ideas.
We went around the group.
Everyone had a chance to share their ideas.
Then we sorted ideas under headings.
Then participants decided which improvements were most important to them.
Things we did to help our participants
First, our PPI group tried out our activities.
They helped us make the activities better!
We broke the activities down into small steps.
We used pictures, simple sentences, and examples to help people understand.
We had pen and paper handy to help people express their ideas.
We were open to all ways of communicating, such as gesture and writing.
If participants needed more help, we would:
- say it again
- say it in a different way
- make it more relevant to them
We gave people lots of time.
We used decision boards.
We gave people sticky dots to “vote” and show us what mattered most to them.
We gave everyone a handout at the end of the session.
It was a recap of what we had done.
Participants could show the handout to family and friends.
Three cheers for our wonderful participants!
| Our participants gave up their time to take part in our discussion groups. |  |
| In sessions, they had to think carefully. |  |
| They had to use their imaginations. |  |
| They gave us so much to think about as we develop APT. Thank you to each and every one of our participants! |  |
Do you have any questions or comments about this project?
Please contact us.
Thank you to everyone who has followed the APT project this year.
Wishing you all a very happy New Year!