We want the research we fund to make a difference in people’s lives. That’s why we think it’s important for researchers to involve stroke survivors in their projects. Stroke survivors’ experiences can improve the quality of research, and help researchers to be more confident that their work will benefit people affected by stroke.
Researchers Dr Madeline Cruice and Dr Lucy Dipper from City, University of London, are collaborating with stroke survivors to develop a new type of aphasia treatment. They tell us how working with stroke survivors has shaped their project.
“Aphasia is a communication disability that affects a third of stroke survivors and can have a big impact on relationships, socialising, study and work. Speech and language therapy can help you to speak, read, understand and write again. However, many people still have trouble communicating in everyday life.
One reason for this is that many existing treatments improve your ability to say single words and short sentences, but don’t improve everyday talking. For example, telling others what you’ve been doing during the week, or sharing memories about favourite holidays or special events.
Developing a new language treatment: LUNA
With Stroke Association funding, we’re developing a new language treatment called LUNA (which stands for Linguistic Underpinnings of Narrative in Aphasia) to support people with aphasia to share personal stories. Currently, we’re developing the evidence for this new treatment and testing it with stroke survivors with aphasia. In the future, we want speech and language therapists to deliver LUNA to people with aphasia during their hospital or community rehabilitation.
Involving stroke survivors in developing this new treatment is essential. It ensures that the treatment makes sense and will motivate stroke survivors to engage with their aphasia rehabilitation. This is important because if people understand how their rehabilitation will make a difference to their life, they’ll feel more in control and are more likely to benefit from it.
In the past year, we’ve worked with stroke survivors with aphasia, including Steve, Lynn, Jan and Varinder on page 11. As members of our project advisory group, they’ve guided the direction of the project and jointly co-designed the LUNA programme at monthly meetings.
At these meetings, we made sure the stroke survivors felt comfortable and supported to share their honest opinions and ask questions. Then together, we explored their previous therapy experiences, practised and discussed story-telling therapy activities, brainstormed ideas and shared feedback on prototypes.
Their input has been invaluable. Our stroke survivors have helped us to choose specific therapy activities and given us the words to explain what LUNA is to future patients - translating researcher-speak into instructions that make sense! They’ve also helped us to understand how and when stroke survivors might independently practise the treatment in their everyday lives, and how the speech therapist should support patients to get the most out of their rehabilitation.”
“Our experiences can help others”
Stroke survivors Lynn, Steve, Varinder and Jan share their perspectives on taking part in the LUNA research.
Q. Why did you get involved in the LUNA research?
Lynn: I love to learn and I want to help so I put my name down for stroke research at City University. That's how I found out about LUNA.
Steve: I was a Sales Director. I was always communicating. Then I had a stroke and couldn't say anything. I wanted to say “pyjamas” and I was saying “kettle”. I'm not working now, but I want to do something else if I can. I’d like to help with aphasia.
Varinder: It’s inspiring to work on a project about telling personal stories. It helps you accept who you are – a person with aphasia, who does things and has stories to tell about it.
Q. What did you do in the LUNA co-design sessions?
Steve: We tried different therapies to do with telling stories. Everyone’s aphasia is different. It was interesting to see how they did the tasks.
Lynn: The researchers showed us ways to think through a story. One was what they called a “spider” [diagram], to help us think about where a story started from, and where it goes. It's well worth taking time to put the story in the right order.
Varinder: We shared our opinions, and stroke and aphasia experiences. The researchers made the sessions easy for us. They made notes as we talked.
Q. How has taking part in the LUNA sessions helped you?
Varinder: Everyone has stories to tell. So do stroke survivors. Being able to tell stories makes us feel more like part of society, rather than apart from it.
Jan: I like that LUNA is about “my stories”. They’ve helped us think about the beginning, middle and end. I mixed them up before.
Lynn: I learnt more from them in three months than in eight years going to college! I feel like I’ve improved my speech and my writing.
Steve: It’s helped me to be more confident and will help others to move forward.
Q. Would you recommend taking part in research to other stroke survivors?
Varinder: Yes. The researchers, professors and students I’ve worked with have been supportive and compassionate and I’ve learnt a lot. I feel proud to be part of research that will help people in the future.
Jan: Research is always on the cusp of new things. Together we can make better language research. Community is better than one-by-one.
Lynn: Put your name down and try it. If you've had a stroke, you can help make it better for someone else.