Be Part of Research: Learning to speak after a stroke

This podcast explores aphasia which is a language and communication disorder usually caused by damage to the left side of the brain, most commonly after a stroke.  Speech and language therapists work with patients and their carers to help them improve their speech and use alternative ways of communicating. In this episode, we talk to Dr Rebecca Palmer about a research study called Big CACTUS and what everyone learnt from taking part.
Read the shownotes and the transcript.

Transcript

Professor Turi King:
Hello and welcome. You are listening to the Be Part of Research podcast.

I’m Professor Turi King, your host and today I’m talking to Dr Rebecca Palmer who is a reader in communication and stroke rehabilitation at the University of Sheffield and she’s also a speech and language therapist.

Today’s podcast is about aphasia, a complex language and communication disorder that can affect people’s abilities to read, listen, speak and write or type. It is usually caused by damage to the left side of the brain most commonly after a stroke.

Rebecca, I’m delighted to be talking to you today. Can you tell us something about your research?

Dr Rebecca Palmer

Yes, so thank you for having me and as you say by background I’m a speech and language therapist. I’ve worked for several years with stroke survivors who have communication difficulties, one of those difficulties being aphasia and one of the things I’ve noted over time is that people often don’t get therapy for a long period of time after their stroke and in some places they don’t get access to very much therapy at all.

I applied for funding initially to do a small scale study to see whether computer therapy might help and whether people liked it.

We had quite positive feedback from patients that this is something that some people did want to do and so I then got a big team of people together including researchers, speech therapists, statisticians, health economists but also importantly lots of people with aphasia themselves and their family members.

We all worked together as a team to put in an application for funding from the National Institute of Health Research and so we won a large grant that enabled us to test out computer therapy for people with aphasia across, I think it was 20 NHS trusts in the UK.

Turi:
So, tell me more about aphasia and how it affects people? Why is it a problem?

Rebecca:
Okay, well if you can imagine not being able to understand what people can say…are saying to you. So, they’re asking you something but you don’t know really what it is. You can’t find the words you want to say so you can’t describe something to somebody.

You can’t necessarily go out to the shop and be confident in asking what you want to get. Or, maybe reading signs. So, driving can become a problem. You can’t quite see where it is you’re meant to be going. It affects so many things for people and it means they often can’t go back to work.

They can’t often take part in the things in the community that they were taking part in before. They often become quite withdrawn and not quite so sort of central to their family life. They can sit in the corner a little bit and not take part and obviously all those things lead to people often feeling frustrated, feeling withdrawn and it often leads to depression.

Turi:
It’s one of those basic human needs being able to communicate with…with people. It’s about that human connection and they lose that don’t they?

Rebecca:
Yeah, absolutely. Absolutely. So, it’s…it’s incredibly difficult not just for the person with aphasia but for their whole family. So, it’s…it’s yeah, a real, real problem and people deserve to have as much therapy and as much support as they can get really to try and make their lives easier.

Turi:
So, what was your study about that you were doing then?

Rebecca:

So, standardly what somebody would have is a speech and language therapist visiting them at home or seeing them in hospital.

Doing different exercises with the patient so just in the same way as if you hurt your arm or you had arm problems after a stroke you’d do physical exercises for your arm, a speech and language therapist will do exercises to help your brain improve – being able to find the right words, being able to write them down, being able to understand what people say to you.

So, we wanted to test out whether computer therapy could add in a useful real way to people and to their experiences of speech and language therapy and one of the first things we had to work out how we actually delivered that programme so it’s no good just giving someone a computer and saying, “Off you go.”

That had to be…we had to work out how we get people to access that computer, how we help people to know how to do the exercises, write advice and come up with a plan, an approach to how it was delivered which we based on Dr Jane Mortley’s own work and how she uses her own computer programme. So, she designed this computer programme step by step.

And so, the upshot of it was we came up with an approach where we had a speech and language therapist tailoring the computer exercises so they had words on for people to practice that were relevant to their everyday lives, so it might have their family members on, it might have pictures of grandchildren and
relearning their names and things like that.

So, it’s like tossing a coin and they either get to go into one group and have computer therapy or they get to go into the other group and carry on with what they are normally provided with.

So, we did that, everybody did that over a six month period. We had 278 people with aphasia and 177 carers took part in that study over what seemed like a very long period of time to me.

Turi:

And what came out of the study? So, you’ve got your control group. You’ve got the people who have been doing this new study that you’ve been doing. What was the outcome?

Rebecca:

So, the outcome was that first of all, I think it was about 90% of people who we gave the computer to did use it and got on very well with it so it’s not for everybody but the majority of people did want to do this.

It really increased the amount of therapy time people got so I think on average people did around 28 hours of independent therapy which is a lot, lot more than people are getting in the long term post straight from a speech therapist.

And I guess the key finding was that it did significantly improve people’s ability to say the words that they chose to practice.

Rebecca:

So, what we found very interesting was a lot of men found this a really good therapy. They liked to go off on their own and do this and find time to do this by themselves.

Turi:

So, after you’ve done this study why are the findings important?

Rebecca:

Well, I think…I think one of the things I didn’t mention was that the population we used here were people who had strokes a few months before so we were looking at people who have communication difficulties in the longer term after stroke when often they might be getting very little of the speech therapy.

And there’s a fairly commonly held belief that people don’t continue to improve after a few months post stroke and what we saw in this study was that the amount of time post stroke didn’t make any difference to how well people are able to learn new words.

So, that for me is hugely important because it should encourage both patients and speech and language therapists and people who commission speech and language therapy services that it is worth still having speech and language therapy in the long term and people can still improve, and so we should give them the opportunity to.

So, I think that finding really underlines that.

I mean the findings as well that people like doing computer therapy and the fact that it can help them to learn more words is important in terms of really encouraging services to make sure computers and speech and language therapy software is available for people to try.

And that certainly is happening now in some of the NHS trusts. We did this study and the results of the study have encouraged the people who hold the purse strings to shell out for iPads and laptops to loan out to patients, so that people are getting more.

I think the other thing in recent times, so through the Covid pandemic, these results came out before the Covid pandemic but during that Pandemic this way of treating people was then suddenly used quite a lot and I think the results of this study may have helped people know that this is an okay thing to do and this is…this is a valid and effective way of providing some treatment when you can’t actually see people face to face.

Turi:

Can you tell us a little bit about Christine and how she helped?

Rebecca:

So, Christine is a wonderful lady and now very good friend who has aphasia. So, she’s had aphasia for many years. At the beginning after her stroke her aphasia was much worse than it is now so she really understands how…how difficult things can be with aphasia. She still has aphasia but it’s much more mild now and she came to our public involvement group.

Rebecca:

So, I could talk about public involvement forever, I think, because for me as the main investigator and speech therapist on the study working with the public involvement group was the absolute highlight of the study for me and I think when people get involved in a study like this they can perhaps underestimate the impact they have on the people who are running the research because for me they kept me grounded.

They kept me going when the research seemed really tough. They were the people who were saying, “This is really important for people like me. Keep going Rebecca. You know we’re behind you. This is what we need.”

And they did some really, really practical things so they…they were able to help make sure the information that we were giving about the research was understandable to other people with aphasia, so they checked everything over and helped us write it in a way that was encouraging people to participate in the study and was understandable.

We also needed to measure whether this worked and so typically what people do is have written questionnaires and things like that. Well, that’s very difficult for people with aphasia. So, our public involvement group helped adapt measures of improvement so that people with aphasia could actually complete them so we knew whether it was beneficial or not.

So, one of the things they got me to do was make a film, ‘cause they said you can…you can write all of the academic papers you like but what’s really going to make a difference here and get people to know about this research is if you’ve got a short film that people can watch that doesn’t take them much time and is very clear.

And so, they really directed that film and starred in it and also, we have aphasia friendly or accessible written findings as well and posters and things to go up on the walls in clinics and booklets that are aimed at being accessible and understandable to all types of people who need to know these results. So, yeah, it was really an amazing experience to work with the PPI group – patient and public involvement group.

Turi:

So, what’s been the overall outcome of the study? What did you learn going through…you’re a speech therapist, did you learn anything surprising? What came out of it for you?

Rebecca:

I suppose some of the things as a speech therapist I possibly suspected but didn’t know for definite. I think as I said earlier there seems to be a common perception that if you had a stroke a long time ago that you won’t make any more improvement and I was never comfortable with that actually and so I think for me as a speech and language therapist one of these things this study has done is really make me feel that I can and should treat people for as long as they want to be treated. For as long as they want to access services because we found that people could improve.

And some of the speech and language therapy departments have been able to obtain more funding to buy computers and to buy software in order to be able to enable people with aphasia to have that therapy.

So, not only in those trusts, not only the people who took part in our study have had the therapy but more and more patients who are coming through those services since the study have also had access to this computer therapy.

Rebecca:

What we hope for the future now is that this study will influence guidelines and recommendations to NHS trusts beyond those that took part in the study so that this broadens out and gets offered routinely to all of those people with aphasia who need and want it.

Turi:

So, we’re nearly at the end of the podcast. What would you like our listeners to remember from this podcast and from your work?

Rebecca:

There’s hope in terms of there is more research going on and we’re going to get better at treating this condition and finally really getting involved, being involved in research in aphasia is absolutely great fun.

It’s massively supportive of researchers and speech and language therapists by getting involved even if you have difficulties communicating we can support you to be able to get across what you think and what you think we need to be doing in the research and in the future therapy for people like yourselves.

My next study is also looking at communication partner therapy. So, it’s about working with the whole family in terms of making conversation and life better and as good as it can be, also funded by the National Institute of Health Research and we’ve just started that.

Turi:

Rebecca, it has been a delight speaking to you about your research study.

For those of you who are interested, the link to the film that Rebecca talked about is going to be available in the shownotes.

Thank you for making this podcast possible and sharing your experiences with us. We hope you enjoyed listening.

If you’d like to read the show notes for this episode or listen to the other podcasts in this series visit www.bepartofresearch.nihr.ac.uk.