Rethinking supported self-management for Black people living with stroke: The relevance of social, cultural and historical racial context
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Objectives
Despite their higher risk of stroke and known inequities in post-stroke outcomes, research amongst minoritised ethnic communities who have experienced stroke is scarce. This study aimed to explore the experiences of Black people in England and identify implications for supported self-management.
Methods
Between December 2023 and June 2024 qualitative interviews were conducted with 20 Black people living with stroke in England. Interviews were conducted in-person or online, depending on participants’ preferences. Data were analysed iteratively using reflexive thematic analysis.
Results
Three themes were developed: (1) “My world after stroke” capturing emotional and social identity-related impacts and adjustments; (2)“My support”: Family, Community and Peers, encapsulating different facets of support and the relational nature of self-management; and (3) “Supported self-management as a negotiated partnership with healthcare professionals”, highlighting the varied nature and outcomes of patient-professional interactions and their social embeddedness, including underlying power and historical racial dynamics.
Conclusions
Our study confirms the need for closer examination of how supported self-management can be provided to different populations. The post-stroke experiences of the Black people who participated in our study were inextricably shaped by their specific familial, social and cultural settings. Their adaptation to and management of the physical and emotional aspects of their condition was enacted across family systems, community and peer networks as well as healthcare services, with varying outcomes. In addition, their interactions and engagement with healthcare professionals were influenced by a broader historical context of discrimination and racism. Our study reveals the importance of delivering supported self-management to Black people living with stroke which responds to their specific social contexts and intersectional identities and which also strives to reduce power imbalances and address historical discrimination, thereby ensuring ‘cultural safety’ in service provision. Overlooking these aspects risks undermining self-management and underserving those who already face significant health inequities.
