Facilitators and barriers to research participation: perspectives of Latinos with type 2 diabetes

Hildebrand, Janett A.; Billimek, John; Olshansky, Ellen; Sorkin, Dara H.; Lee, Jung-Ah; Evangelista, Lorraine S.

doi:10.1177/1474515118780895

Cited by 23 publications

(18 citation statements)

References 16 publications

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“…Hispanic PWP preferred the research team spoke their same language and their families were comfortable with the team, which likely reflects a better understanding of the Hispanic culture. Alongside language barriers, lack of healthcare coverage, family responsibilities, legal status, work schedules, and cultural differences were also previously reported as potential barriers for research participation in other diseases [ 23–26 ]. Previous studies have suggested that Hispanics are con-cerned with unethical research practices or potential harm [ 7 ], and that both Hispanics and African Americans have mistrust of the medical system [ 27, 28 ].…”

Section: Discussionmentioning

confidence: 99%

Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

Damron

Litvan

Bayram

et al. 2021

JAD

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Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

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Section: Discussionmentioning

confidence: 99%

Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

Damron

Litvan

Bayram

et al. 2021

JAD

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“…Some may distrust government-funded research, citing deportation concerns, while others may have never participated in research and distrust the research process [18]. Other barriers to their recruitment may include language, lack of health literacy, and lack of access (e.g., transportation) [4,19,20]. Interestingly, when invited to participate in clinical trials, Latinos enroll at similar rates as NLWs [21,22], indicating they are interested in participating in research when recruitment strategies are culturally and linguistically tailored to them.…”

Section: Introductionmentioning

confidence: 99%

Feasibility and Effectiveness of Recruiting Latinos in Decídetexto—A Smoking Cessation Clinical Trial from an Emergency Department Patient Registry

Arana-Chicas

Cartujano-Barrera

Ogedegbe

et al. 2021

IJERPH

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There is an underrepresentation of Latinos in smoking cessation clinical trials. This study describes the feasibility and effectiveness of recruiting Latino smokers in the U.S. from an emergency department (ED) patient registry into a randomized smoking cessation clinical trial. Recruitment occurred from the Hackensack University Medical Center ED. Potential participants were contacted from a patient registry. The primary outcome was whether the participant responded to a call or text. Secondary outcomes included the best day of the week, week of the month, and time of day to obtain a response. Of the 1680 potential participants, 1132 were called (67.5%), while 548 (32.5%) were texted. For calls, response rate was higher compared to text (26.4% vs 6.4%; p < 0.001). More participants were interested in the study when contacted by calls compared to text (11.4% vs. 1.8%) and more participants were enrolled in the study when contacted by calls compared to text (1.1% vs. 0.2%). Regression models showed that ethnicity, age, time of day, and week of the month were not significantly associated with response rates. Recruitment of Latinos from an ED patient registry into a smoking cessation clinical trial is feasible using call and text, although enrollment may be low.

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“…Ridgeway et al (2013) showed an association between a simplified form and nonresponse for recruitment efforts to a biobank. Further, individuals from racial or ethnic minorities may be less likely to participate in research for historical reasons, as they are aware of past abuses by researchers to participants (Heredia et al, 2017;Hildebrand et al, 2018;Kim & Milliken, 2019;Rangel et al, 2019).…”

Section: Analysis Of Resultsmentioning

confidence: 99%

“…Hispanic culture is not monolithic, coming from different regional backgrounds, in how they respond to medicine, research, authority, and other factors, and non-Mexican-Americans, as the Northeast site population, are less likely to participate in research (Gabriel et al, 2014). Many regard a connection with their primary care physicians as primary and authoritative to their decisions about health care and participation in research (Hildebrand et al, 2018;Quinn et al, 2012). Many prefer recruitment for research to be integrated into their health care so they can hear from trusted providers about the safety and benefits of research (Quinn et al, 2013).…”

Section: Analysis Of Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes

Simon

Wang

Shinkunas

et al. 2021

Journal of Empirical Research on Human Research Ethics

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Some individuals’ understanding of informed consent (IC) information may improve with electronic delivery, but others may benefit from face-to-face (F2F). This randomized, multisite study explores how individuals from diverse backgrounds understand electronic IC documents versus F2F, their confidence in understanding, and enrollment in research. A total of 501 patients at two U.S. biobanks with diverse populations participated. There were no overall differences between electronic and F2F understanding, but F2F predicted higher confidence in understanding and enrollment. Ethnicity and a higher educational level predicted higher understanding and confidence. Study findings suggest that electronic consent may lead to better understanding for non-Hispanic patients of higher socioeconomic status. F2F processes may lead to better understanding and higher enrollment of patients from Hispanic and lower socioeconomic levels. Researchers should carefully consider how they implement electronic IC processes and whether to maintain an F2F process to better address the needs and limitations of some populations.

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Facilitators and barriers to research participation: perspectives of Latinos with type 2 diabetes

Abstract: Strategies to support learning, language concordance and establishing trusting relationships among Spanish-speaking Latinos may be key to increasing Latinos in research studies.

Cited by 23 publications

References 16 publications

Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

Feasibility and Effectiveness of Recruiting Latinos in Decídetexto—A Smoking Cessation Clinical Trial from an Emergency Department Patient Registry

Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes

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