Gaining the guidance, insights and lived experiences of stroke survivors and family members is crucial for doing meaningful and impactful stroke research.  From identifying research priorities and research questions, through to designing the study and discussing findings, our South London Stroke Research Patient and Family Group, a patient and public involvement (PPI) group made up of stroke survivors and family members, has been supporting stroke research at King’s for almost two decades. 

Recruiting diverse stroke survivors

Stroke is the leading cause of complex disability worldwide. At King’s we have a long history of research into stroke and striving to improve care for stroke survivors.  Our work has also considered how we can make stroke care and stroke outcomes fair.  We know that different groups in society do better after a stroke than others, despite having similar strokes and stroke-related impairments.  It is vital that this work continues but also that we continue to gain input from diverse stroke survivors and family members so we can continue to identify issues and work to counteract and not reinforce inequalities. 

While our Patient and Family Group is diverse in many important ways (for example, age, gender, ethnicity and socio-economic status), we noticed that at least in our group and in others across the country, those who had more severe stroke related-impairments were often absent from meetings and research discussions. A stroke can affect someone’s mobility, cognition, vision, memory and, in 60% of stroke survivors, their ability to communicate verbally.  Many of these stroke-related impairments might be barriers to participating in our PPI work, so we decided to investigate what we could do differently to increase the potential for all stroke survivors to participate if they wish. 

Funded through the NIHR ARC South London Involvement Fund and our NIHR-funded programme of stroke research, we worked with a small group of Patient and Family Group members with communication difficulties after stroke to identify how we can make the PPI meeting a more suitable space for those with communication difficulties to participate.  Face-to-face or online meetings may not be the best way to engage people with complex health-related difficulties, but this is the most common and least costly way of doing PPI in health.  As a first step, we wanted to see what we could do within the context of the typical PPI meeting to improve the inclusiveness of such activity. 

Inclusive practices

We recruited a small group of stroke survivors who had different communication difficulties after stroke (mild to severe aphasia, apraxia and dysarthria), and were diverse in gender and ethnicity. Meeting with this group once a month for three months and supported by a speech and language therapist and aphasia researcher, the group identified several things researchers could do to help those with communication difficulties.  They suggested any presentations on research where their input is sought should be provided a week before the meeting, be pre-recorded and a maximum of five minutes in length.  They asked that researchers also provide the questions they wish to discuss at this point.  Presentations should use straightforward language, with keywords in bold.  This allows those with communication difficulties to prepare for the meeting, listen at their own pace, and think about the questions in advance.   

During meetings, our participants suggested that everyone needs to be patient and not afraid of silence.  With the presentations watched in advance, there will be more time for discussion and to allow those with communication difficulties to express themselves.  Finally, they suggested that the end of the meeting should not be the end of the conversation.  For some, it will only be after the meeting when ideas and thoughts will be clear enough for them to express.  Having ways for PPI group members to give their input afterwards in writing, on the telephone and through a friend or family member was crucial. 

We are now preparing written guidance and trialling this approach with our broader Patient and Family Group. While there are numerous practical ways we can support stroke survivors to contribute to our PPI work, for our working group members, the most important thing we could do was to promote this work with their own voices, so stroke survivors and family members know not only about the group but that we’re working to remove barriers.  With our limited budget and the expertise of an audio engineer, we produced a short video promoting this work. 

Working towards removing barriers to involvement

This is only the beginning of our work to make stroke PPI more inclusive of the diverse ways a stroke can impact a person and their ability to contribute to the design and delivery of research.  In March 2024, we will start a new project looking at how we can engage and involve stroke survivors who are impacted by stroke in all different ways, in PPI, not just through PPI meetings but also in other face-to-face and digital ways.  

Our work so far, however, has highlighted the need to think about inclusive practices in research that also acknowledge the diverse ways illness can impact patients. This is clearly a complex issue and is not specific to stroke.  The general push for equality, diversity and inclusion in research as well as removing barriers to the participation of ‘underserved communities’ is hugely important.  We must also make sure that how we do research and involvement work does not inadvertently exclude groups with specific illness-related impairments, particularly when we know inequalities and poorer health outcomes often intersect. I’d love to speak to anyone interested in this topic.

I’m always happy to talk about how we can improve PPI in general and how we can do this in stroke research in particular (david.wyatt@kcl.ac.uk).  

Find out more

  • Watch a short video about how the South London Stroke Research Patient and Family Group has worked to make it easier for people with communication difficulties to have a say in research.