ISSMAS (Inclusivity in Stroke Self-Management Support)

Black people in the UK are more likely to have a stroke than white people, and experience stroke at a younger age. They are especially affected by conditions, such as sickle cell disease and diabetes, which increase their stroke risk, and are known to be affected by wider health inequalities. Yet, little is known about Black people’s experiences of stroke and what kind of support would help them adapt and manage their health more effectively following stroke. 

The ISSMAS (Inclusivity in Stroke Self-Management Support) project, funded by the National Institute of Health and Social Care, Research for Patient Benefit programme, is a collaboration between UWE Bristol and Kingston University. The project team works in partnership with people from Black communities living with stroke, including people whose voices are seldom heard in discussions around stroke.

We carried out in-depth qualitative interviews with Black people who have experienced stroke and their carers. We then worked with design consultants to  adapt the experience-based co-design methodology and co-produce two resources (coming soon):

1. "It's hard but not impossible": Black people's experiences of living with stroke
   A short film for Black people living with stroke to increase their skills, knowledge and confidence following a diagnosis of stroke. The film shares personal journeys and offers advice on how to cope and adapt following a diagnosis of stroke.
2. "People remember how you make them feel": Black people living with stroke and their experiences of healthcare services
   A short film for health and social care professionals to improve their support to Black people who have experienced stroke. The film aims to bring health and social care professionals closer to Black people’s experiences, and prompt ideas for improving service provision.

Building on the collaboration and relationships developed, we will be working on ways of disseminating the films within Black communities to stimulate discussion and action, and embedding the film aimed at healthcare professionals on health service platforms. 

• Dr Jo White, Senior Research Fellow, UWE Bristol, Co-Lead
• Professor Tushna Vandrevala, Kingston University, Co-lead
• Dr Emily Dodd, Senior Research Fellow, UWE Bristol, PPI Lead
• Associate Professor Mary Cramp, UWE Bristol
• Dr Liz Livingstone, Research Fellow, Kingston University
• Emma Ranger, UWE Bristol
• Meleat Habaty, Kingston University
• Andrea Drysdale, public contributor with lived experience 
• Evelyn Schiller, public contributor with lived experience
• Dr Paul Micklethwait, design consultant
• Louis Heatlie, design consultant

• October 2024 to January 2025

• Caribbean and African Health Network (CAHN) 
• Bristol Afterstroke
• CAAFI Health
• Latent Pictures

For more information on the project, please contact Jo White (jo.white@uwe.ac.uk).