Hispanics’ Perceptions of Participation in Research Studies and Solutions for Improvement in Participation

Abstract

In 2022, the Hispanic population in the United States reached 63.6 million, accounting for 19% of the total population. Despite this growth, Hispanics are significantly underrepresented in research studies. The purpose of this mixed-methods study was to evaluate perceived research burden, explore perceptions towards participation in research studies, and solicit strategies to increase research participation in Hispanics. We recruited 25 Hispanic participants’ ages 18-65 years from the community. Data were collected using a demographic data sheet, the Perceived Research Burden Assessment (PeRBA), and face-to- face interviews. It took about 10 minutes to collect the quantitative data. Interviews lasted 20 to 60 minutes. Audio-recorded interviews were transcribed and translated from Spanish to English by certified translators. Data analyses involved descriptive statistics, the Wilcoxon Rank Sum Test, and thematic analysis. Eighty (n =20) of the participants were female, 80% (n = 20) spoke a Spanish dialect as their primary language, 43.3% (n = 13) had an annual income of less than $20,000, 56% (n = 17) had no health insurance, and 49.9% (n = 15) had less than a 12th-grade education. The PeRBA revealed three main areas of research participation burden: 1) second thoughts about participating, 2) participation regret, and 3) participation costs. Five major themes emerged from the interviews: 1) lack of knowledge, 2) immigration status, 3) social isolation, 4) language and literacy, and 5) transportation. Two additional themes were academic and community partnerships, and community engagement via social media platforms.