The purpose of this study was to understand factors that may influence the participation of the Hispanic and Latino community in stroke rehabilitation research studies in the midwestern United States.
An academic-community partnership was formed between stroke rehabilitation researchers at the University of Cincinnati and community experts at Santa Maria Community Services (SMCS) in 2023. Over a one-year period, we developed and administered a survey and conducted focus groups in English and Spanish at SMCS aimed at understanding Hispanic and Latino perspectives regarding awareness, interest, and barriers to participation in stroke rehabilitation research. Themes from focus groups were analyzed with respect to the major barriers and facilitators of research participation by applying grounded theory and open coding.
Two major themes emerged from the focus groups: Research Engagement and Stroke Knowledge. While generally interested in participating in research and motivated to attain additional information, participants were widely unaware of stroke rehabilitation research opportunities in the community. Many participants expressed a desire for researchers to provide more information on the potential benefits and motivations for research studies, and participants were broadly unfamiliar with general research processes (e.g., informed consent, Likert scales). Most participants noted a language barrier as a critical factor limiting research participation. Participants demonstrated limited knowledge about stroke and physical therapy, further restricting stroke rehabilitation research participation.
Barriers exist for stroke rehabilitation research participation among individuals in the Hispanic and Latino community in the midwestern United States, largely lack of awareness of research opportunities and limited understanding of stroke and rehabilitation. In order to address this gap and increase Hispanic and Latino research participation, it is necessary for stroke rehabilitation research teams to create culturally inclusive materials, include multiple interpreters on the study team, and enhance outreach/relationships with community organizations that directly work with individuals in the Hispanic and Latino communities.
Representative stroke research ensures that rehabilitation interventions aiming to improve post-stroke function are designed to meet the needs of those they are created to serve. Poor research generalizability is a health equity issue. When individuals are excluded from research, they are also excluded from critical and innovative resources in healthcare delivery. Understanding the factors that influence research participation in specific communities may help to improve research generalizability.
community-based research
diversity
