Background

Stroke can result in a broad range of functional problems, including ability to self-care, move around, communicate and problem-solve which can affect the person’s ability to return to their previous activities and roles. Stroke often therefore has great consequences for families, friends, communities and society.

Stroke disproportionately affects people of South Asian ethnicities; they are substantially more likely to have a stroke, and at a younger age. Those living in high income countries like the UK typically have poorer functional outcomes than their white counterparts.

South Asian people living in the UK who have had a stroke may experience post-stroke care and rehabilitation differently than their white counterparts, due to a range of factors including language, lifestyle factors and culture-based family roles and expectations. Despite this, little research has explored their experiences and needs, and we know little about their priorities for how post-stroke care could be improved. Additionally, the South Asian community (alongside other ethnic minorities) is frequently under-represented in research, due to a range of barriers, many stemming from typical research practice, including those related to language and culture, worries about the consequences of participation, and mistrust of research.

Aims & Objectives

Aim:

Our ambition is to understand the research priorities of South Asian people with lived experience of stroke (including informal carers, and those with cognitive and communication difficulties), and to work with them to develop research studies that are inclusive and meet their needs, thus encouraging participation and increasing the generalisability of findings. This will allow us to develop interventions to address health inequalities. The aim of this project is to identify how best we can work with South Asian people with lived experience of stroke, using participatory methods.

Objectives:

The outcomes of this project will be:
– Knowledge and understanding of how best to engage South Asian people with lived experience of stroke in participatory research
– A funding application for our planned research priority setting work
– Establishment of networks for the future involvement of South Asian people with lived experience of stroke in research projects.

Methods

We intend to establish a face-to-face working group of approximately ten South Asian people with lived experience of stroke. We will visit and engage with a wide range of South Asian community groups, to meet and identify group members.

The group will meet four times over five months (alongside their carers), taking part in structured activities with researchers. They will discuss their experiences of engaging with post-stroke care and research, and their views on how people from South Asian backgrounds could be supported to engage in participatory research. We will explore different approaches to recruitment and to such engagement, including peer interviews, storytelling, arts-based research methods and peer-led focus groups, including in community-relevant languages. We will discuss involvement of people with cognitive and communication difficulties. We will also discuss whether, for example, some group activities should be gender or faith specific. There will be opportunities for group members to engage in these activities between meetings, with support and training provided by researchers. From this group, we will identify a co-applicant(s) for a future study aiming to use participatory methods to identify the research priorities of South Asian people with lived experience of stroke, and work with the group to develop a funding application.

Partners & Collaborators

Investigators
Tom Crocker, Louisa Burton and Farhat Mahmood.

Collaborators:

University of Leeds, Bradford Teaching Hospitals NHS Foundation Trust.

Timescales

01/10/2024 – 31/03/2025

Funding agency

Research England Participatory Research Fund

Further information