Team profile by Srishti Kumari, Ty Johnson, Haley Geers, Navina Doss, Sophia Li, Amruth Amari, MaryBeth Gallagher and Antoine Bailliard

Our team’s focus was to understand how changes in sensory health post-stroke affect participation in meaningful activities of daily living. Although research has demonstrated that adults post-stroke experience changes in their sensory health, there is a gap in the literature explicating the impact of those changes on meaningful participation. 

In 2022-2023, the team conducted four focus groups with stroke survivors, caregivers and rehabilitation therapists to explore the impact of changes in sensory health on meaningful activities of daily living. 

Focus group participants reported experiencing significant changes in their activity participation as a result of changes in their sensory health. They also reported that these changes were often missed in acute phases of assessment of rehabilitation and were often only discovered when people returned home to their daily routines. Study participants reported becoming overstimulated and nauseous by bright lights, loud noises, and fast-moving environments. These changes caused people to stay inside where environments were more predictable and less overstimulating.   

Although study findings from phase one were compelling and important, all participants from phase one were White. Therefore, the research team sought to adopt more inclusive study approaches to recruit a more diverse study sample that would also solicit the perspectives of groups who are underrepresented in stroke research and who demonstrate inequity in stroke outcomes. 

Therefore, in phase two of this project, the 2023-2024 team sought to expand stroke research by investigating how changes in sensory health affect the meaningful activities of members of minority populations. The team conducted literature reviews to identify the following three population cohorts who are underrepresented in stroke research and have inequities in stroke outcomes: Black, Hispanic and Asian populations.

Prior to recruitment, our team reviewed different models of participatory research, such as participatory action research and community-based participatory research to discuss the advantages and disadvantages of adopting different models. From this review, we identified best practices for participatory research for the project in the Durham area. 

In addition, each team member engaged in reflective practices on positionality to understand how their positionality can impact developing community partnerships and engaging in participant recruitment. To facilitate the reflection, the team was also introduced to theories of social space such as Bourdieu’s Theory of Practice. 

Subsequently, the team identified community gathering places and points of contact to begin the recruitment process. We followed principles for participatory research to engage individuals from underrepresented communities and forge connections with community partners, conducting in-person recruitment and handing out flyers in places of worship, grocery stores, restaurants, community centers and other places of gathering. Additionally, we recruited through partners at Duke and UNC occupational therapy clinics. 

The team quickly learned that recruitment of underrepresented and minoritized groups takes considerable time and effort to develop trust and partnerships. Our group is currently scheduling focus groups with consented participants from the Black cohort and is reaching out to additional religious organizations for the Asian and Hispanic cohorts. 

Life After Stroke: A Sensory Health Initiative

Poster by Amruth Addanki, Navina Doss, Haley Geers, Ty Johnson, Srishti Kumari, Sophia Li, MaryBeth Gallagher and Antoine Bailliard