African-American and Hispanic Perceptions of HIV Vaccine Clinical Research: A Qualitative Study

Toledo, Lauren; McLellan-Lemal, Eleanor; Arreola, Sonya; Campbell, Chadwick K.; Sutton, Madeline Y.

doi:10.4278/ajhp.130125-qual-48

Cited by 7 publications

(8 citation statements)

References 22 publications

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“…Numerous studies have shown that race significantly shapes attitudes towards trust in biomedical research, at least in the mainland US. African Americans, in particular, have been more distrustful of medical research, after Tuskegee and other past abuses [15–18]. Native Americans also share some of these same misgivings, and in particular, tribes have been very vocal in recent efforts like the Human Genome Diversity Project about the ethics of conducting research involving their communities which they perceive to be exploitative [19–21].…”

Section: Introductionmentioning

confidence: 99%

Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research

et al. 2018

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BackgroundThe establishment of trust between researchers and participants is critical to advance HIV and HCV prevention particularly among people who inject drugs (PWID) and other marginalized populations, yet empirical research on how to establish and maintain trust in the course of community health research is lacking. This paper documents ideas about trust between research participants and researchers amongst a sub-sample of PWID who were enrolled in a large, multi-year community health study of social networks and HIV/HCV risk that was recently conducted in rural Puerto Rico.MethodsQualitative research was nested within a multi-year Social Network and HIV/HCV Risk study involving N = 360 PWID > 18 years of age living in four small, rural Puerto Rican communities. Semi-structured interviews were conducted between March 2017 and April 2017 with a subset of 40 active PWID who had been enrolled in the parent study. Interview questions invited participants to draw upon their recent experience as research participants to better understand how PWID perceive and understand participant-researcher trust within the context of HIV/HCV-related epidemiological research.ResultsFear of police, stigma and concerns regarding confidentiality and anonymity were identified as structural factors that could compromise participation in HIV/HCV-related research for PWID. While monetary compensation was an important motivation, participants also valued the opportunity to learn about their HIV/HCV status. During their participation in the study, gaining knowledge of safe injection practices was perceived as a valuable benefit. Participant narratives suggested that PWID may adopt an incremental and ongoing approach in their assessment of the trustworthiness of researchers, continuously assessing the extent to which they trust the research staff throughout the course of the research. Trust was initially generated through peer Respondent Driven Sampling recruitment. Research staff who maintained a presence in the community for the entire duration of the prospective study reinforced trust between participants and the research team.ConclusionAlthough PWID face numerous structural barriers to research-related trust in HIV/HCV research, we found that using a peer-based recruitment method like RDS, and employing a research staff who are knowledgeable about the targeted population, culturally sensitive to their needs, and who maintain a long-term presence in the community may help mitigate many of these barriers. The reputation of the research is built incrementally as participants join the study. This contributes to a “street reputation” that grows as current or former participants vouch for the study. Establishing trust was identified as only the first step towards building a collaborative relationship with participants, and our findings suggest that steps to address criminalization and stigmatization also are necessary to support research trust.

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Section: Introductionmentioning

confidence: 99%

Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research

et al. 2018

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“…Of these, nine were cross-sectional surveys 36,[44][45][46][47][48][49][50][51] and seven were qualitative assessments. [52][53][54][55][56][57][58] Another eight studies addressed factors to participating specifically in a vaccine trial (four cross-sectional, [59][60][61][62] four qualitative [63][64][65][66] ). The remaining studies reported on small pilot or full randomized behavioral interventions aimed at increasing intention to or actual participation in a clinical trial.…”

Section: Resultsmentioning

confidence: 99%

“…A number of studies also found conspiracy beliefs about the origins of HIV or how the government was responsible for its spread. 44,55,57,60,63 This general distrust of the medical system and government overall were pervasive throughout the studies for both medication and vaccine clinical trials. This might be further exacerbated in vaccine trials where you are asking a healthy person to try a medication they may have negative interactions to.…”

Section: Cross-sectional and Qualitative Studies Of Medication And Vamentioning

confidence: 99%

“…HIV stigma is important to patients who may be concerned about disclosure of their status or being seen taking part in an HIV-related treatment or vaccine trial. 46,51,54,55,57,58,61,63,64,65 For example, Brooks et al 64 did focus groups among Spanish-speaking Hispanics/Latinx in Los Angeles to discuss barriers to vaccine trial participation. HIV stigma emerged as a major barrier, with participants noting that negative community beliefs about HIV and AIDS are still prevalent and that many may only participate in a trial if it was ''secret'' and other people would not know about their participation.…”

Section: Cross-sectional and Qualitative Studies Of Medication And Vamentioning

confidence: 99%

“…45 On the other hand, if they did receive the trial medication there was fear that it would not work on them or that the new medication would lead to negative side effects, both short-term and long-term. 50,54,57,60,61,63,66 Many people were also concerned about losing the stability of their current medication regime. These issues were found in at least one study to be especially salient for minority women.…”

Section: Cross-sectional and Qualitative Studies Of Medication And Vamentioning

confidence: 99%

See 2 more Smart Citations

Exploring the Engagement of Racial and Ethnic Minorities in HIV Treatment and Vaccine Clinical Trials: A Scoping Review of Literature and Implications for Future Research

Bass

DʼAvanzo

Mohammed

et al. 2020

AIDS Patient Care and STDs

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HIV disproportionately impacts US racial and ethnic minorities but they participate in treatment and vaccine clinical trials at a lower rate than whites. To summarize barriers and facilitators to this participation we conducted a scoping review of the literature guided by the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) guidelines. Studies published from January 2007 and September 2019 were reviewed. Thirty-one articles were identified from an initial pool of 325 records using three coders. All records were then assessed for barriers and facilitators and summarized. Results indicate that while racial and ethnic minority participation in these trials has increased over the past 10 years, rates still do not proportionately reflect their burden of HIV infection. While many of the barriers mirror those found in other disease clinical trials (e.g., cancer), HIV stigma is a unique and important barrier to participating in HIV clinical trials. Recommendations to improve recruitment and retention of racial and ethnic minorities include training health care providers on the importance of recruiting diverse participants, creating interdisciplinary research teams that better represent who is being recruited, and providing culturally competent trial designs. Despite the knowledge of how to better recruit racial and ethnic minorities, few interventions have been documented using these strategies. Based on the findings of this review, we recommend that future clinical trials engage community stakeholders in all stages of the research process through community-based participatory research approaches and promote culturally and linguistically appropriate recruitment and retention strategies for marginalized populations overly impacted by HIV.

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Factors that impact on recruitment to vaccine trials in the context of a pandemic or epidemic: a qualitative evidence synthesis

Meskell,

Biesty,

Dowling

et al. 2023

Cochrane Database of Systematic Reviews

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African-American and Hispanic Perceptions of HIV Vaccine Clinical Research: A Qualitative Study

Cited by 7 publications

References 22 publications

Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research

Establishing trust in HIV/HCV research among people who inject drugs (PWID): Insights from empirical research

Exploring the Engagement of Racial and Ethnic Minorities in HIV Treatment and Vaccine Clinical Trials: A Scoping Review of Literature and Implications for Future Research

Factors that impact on recruitment to vaccine trials in the context of a pandemic or epidemic: a qualitative evidence synthesis

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