Hispanic and Latino perspectives on stroke and rehabilitation research in the midwestern United States: an exploratory mixed methods study.

Background: Individuals in the Hispanic and Latino community have the lowest levels of post-stroke function compared to other races and ethnicities and are poorly represented in stroke rehabilitation research studies.

Objective: To understand the Hispanic and Latino perspective on stroke and rehabilitation research in the midwestern United States.

Methods: An academic-community partnership was formed between stroke rehabilitation researchers and community experts. Over a 9-month period, we developed and administered a survey and conducted focus group discussions aimed at understanding Hispanic and Latino perspectives on stroke and rehabilitation research. Themes from focus group discussions were abstracted using inductive thematic analysis.

Results: The survey identified that there are concerns which may limit research participation in general and that family comfort with the research team is valued. Three themes emerged from focus group discussions: (1) Research Engagement and Information; (2) Stroke Knowledge; and (3) Community Contextualization and Cultural Congruence. While generally interested in research and motivated to attain additional information, participants were widely unaware of stroke and rehabilitation research opportunities and reported limited stroke knowledge. Participants noted language differences as a critical concern, and there was a strong desire to understand the community impact of research.

Conclusion: Limited information exchange and limited understanding of stroke are concerns among the Hispanic and Latino community in the midwestern United States. It is necessary for stroke and rehabilitation research teams to engage in productive information sharing and enhance relationships with community partners.