Developing a Culturally Informed Survey Instrument to Assess Biomedical Research Participation Among Latinos on the U.S.–Mexico Border

• Published in: Qualitative health research Vol. 29; no. 3; pp. 445 - 454
• Main Authors: Hohl, Sarah D., Ceballos, Rachel, Scott, Mary Alice, Thompson, Beti
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA SAGE Publications 01.02.2019; SAGE PUBLICATIONS, INC
• Subjects: Biomedical research; Biomedical Research - organization & administration; Borders; Cognitive interviews; Cultural Competency; Ethnic groups; Experts; Health Knowledge, Attitudes, Practice; Humans; Interdisciplinary aspects; Interviews as Topic; Latin American cultural groups; Low income groups; Medical research; Mexico; Minority groups; Multidisciplinary teams; Paradigms; Participation; Patient Selection; Polls & surveys; Qualitative Research; Recruitment; Research Design; Research Subjects - psychology; Rural communities; Socioeconomic Factors; Socioeconomic status; Surveys and Questionnaires - standards; Trust; Underserved populations; United States; United States; Mexico; United States > US; cultural competence; minorities; marginalized or vulnerable populations; culture; U.S. border community; sequential qualitative research design; Hispanics/Latinos; methodology
• ISSN: 1049-7323; 1552-7557
• DOI: 10.1177/1049732318801364

Racial/ethnic minorities, rural populations, and those with low socioeconomic status income are underrepresented in research in the United States (U.S.). Assessing preferences for recruitment, participation, and the role of beliefs about biomedical research in specific and unique underserved communities represents a potentially critical step in reducing barriers to biomedical research participation. We developed a culturally informed survey to measure factors related to participation, knowledge, expectations, and barriers to biomedical research participation among Latinos living in a U.S. border community. We employed a multidisciplinary team approach to a sequential, three-phase qualitative study that included interviews (n = 35), focus groups (n =24), and “think-aloud” cognitive interviews (n = 5). Our study demonstrates the value of applying multiple qualitative approaches to inform a culturally relevant quantitative survey incorporating words and constructs relevant to the population of interest. The study contributes to qualitative method research paradigms by developing a research protocol that integrates the expertise and perspectives of researchers and community members from multiple disciplines and institutions.