Do I belong here? The lived experience of navigating health services as a Black person living with stroke in England

Background: Black people are twice as likely to experience stroke, more likely to have a stroke younger and have poorer outcomes than White people. Clinical factors and socio-economic status account for only half of the increased risk, suggesting systemic and structural factors are also involved. Lived experience of Black people living with stroke (BPLS) in England is under-researched. Candidacy Theory describes how people access health services, how perceptions of eligibility and suitability are socially constructed, and how this can perpetuate disadvantage. By applying Candidacy Theory to the findings of our qualitative study on the experiences of BPLS in accessing and navigating health services, we identified some key drivers of current inequalities and ways of addressing them.

Methods: Our study aimed to gain greater understanding of how BPLS in England engage with and experience healthcare services. We applied Candidacy Theory to gain insight into experiences of and inequalities faced by this community and implications for service provision. 20 semi-structured interviews were conducted with adults living with stroke, identifying as African, Caribbean or of mixed heritage. Purposeful sampling included men and women with a broad range of ages and ethnicities, recruited via community and national organisation gatekeepers. Interviews were analysed using Reflexive Thematic Analysis and mapped onto the Candidacy Theory framework. 

Results: Findings highlighted the plethora of barriers facing BLPS in accessing services, including lack of knowledge of stroke risk or symptoms, and not being believed or listened to by healthcare professionals. While navigating services, participants encountered misalignment with their cultural and age-specific needs. Offers of services were sometimes rejected due to distrust of medical treatment, stigma associated with mental health support, lack of representation, and previous negative experiences, such as microaggression, stereotyping and racism. Participants suggested that trust-building with healthcare professionals could be impeded by historic negative experiences, further exacerbated where there is poor awareness and communication. 

Conclusions: BPLS face particular disadvantages and barriers in reducing their stroke risk and accessing health services post-stroke. To address these, a holistic, systemic approach is needed, to develop inclusive and “culturally safe” services, build trust and improve accessibility of services.