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Why we must listen to the voices of stroke survivors in research to inform better care

Francesca Butler, Project Officer at The Health Policy Partnership



Stroke experts running pioneering research projects are using co-production, which is the practice of actively involving people affected by the medical condition under investigation.  This approach helps ensure that the projects reflect the needs of the people the research community wishes to serve.

What is co-production?

Put simply, research co-production, also called participatory research, means ‘doing research with those who use it’. It refers to the meaningful involvement of people who have lived experience of or expertise in the area of study at each stage of the research. For example, people living with generalised anxiety disorder may co-produce research into therapies, helping decide the research questions and ensuring that the findings are meaningful to other people with the condition.

What benefits could co-production offer stroke research?

There are more than 600,000 cases of stroke in the EU every year. While some are fatal, many people survive, marking the start of a longer journey to recovery. In fact, stroke is the leading cause of acquired disability among adults in the UK. It can lead to impaired speech, memory, mobility and vision, and can also increase the risk of depression.

However, many survivors of stroke do not receive the long-term rehabilitative care they need to address the often significant effects of the condition on quality of life. Currently, management programmes to reduce behavioural risks are only available in half of European countries. Experts believe that between a quarter to a third of all strokes are repeat events, occurring in someone who has already had a prior stroke.

Clearly, we need to do better at rehabilitating and protecting people who have had a stroke. But, as strokes are often complex, affecting each person in different ways, there is a lack of research on interventions in long-term care, and many unknowns remain.

The active involvement of stakeholders, including stroke survivors, in the research, design and implementation of relevant programmes could lead to a better understanding of what works best in rehabilitative care and help ensure that treatment best meets patients’ needs.

This, in turn, could help build a strong evidence base to push for much-needed additional funding for long-term rehabilitation.

The successful LUNA model demonstrates the benefits of co-production

About one third of stroke survivors will experience aphasia, which is a language and communication disorder that can affect the delivery and understanding of speech. Despite spoken discourse (natural, everyday talk) being a treatment priority for those affected, it is not routinely assessed in clinical practice, partly due to a small evidence base.

The Linguistic Underpinnings of Narrative in Aphasia (LUNA) research project used co-production to design a therapy to help people with speech difficulties following a stroke. It focused on a treatment to help them share personal stories. Four people with persistent speech difficulties were actively involved in the project, along with four speech and language therapists (SLTs).

One of the individuals involved, Steve, spoke with us about his experience of the project. Steve’s stroke 13 years ago left him initially unable to speak at all.

Steve and the other contributors living with aphasia helped co-design the programme at monthly in-person meetings, exploring storytelling techniques and feeding back on which worked best. The research team concluded that the resulting programme materials were ‘more practical, feasible and acceptable to clinicians and clients than if designed by academics alone’.

Steve told us that he enjoyed participating in the project, during which he shared stories about travelling to Vatican City and Greece with his family. He noted that it was ‘very successful’ and is now being ‘implemented around the world’. As a result of his positive experience, he would definitely advise other stroke survivors to get involved in research.

What can we learn from this?

The LUNA model highlights the advantages of meaningfully involving stroke survivors in the process of creating important and improved therapies.

Being involved in research can also benefit the contributors themselves by providing them with the opportunity to meet others who share similar experiences and a passion for improving care.

The researchers noted that the positive outcomes for the contributors included ‘increased confidence, self-knowledge, pride, validation, peer support, networking and benefits to SLTs’ services’.

If you are designing a research project or are interested in learning more, you can read about the LUNA model here.