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

Abstract

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.

High-risk behaviors and their association with awareness of HIV status among participants of a large-scale prevention intervention in Athens, Greece

“…This is rather striking but could be attributed to the fact that the outbreak in Athens was recent. This finding is in agreement with previous studies, which found that HIV-infected PWID remain unaware of their serological status for a certain time [20,21,[32][33][34][35][36][37][38]. PWID might not seek HIV testing for a variety of reasons including stigma and discrimination [39][40][41][42][43][44], fear of finding out that they are infected, and their perception of being at low risk for HIV infection [38,45].…”

Barriers and motivators to participation and retention in HIV/HCV cohort studies among people who inject drugs: A community consultation in Iran

“…Similar to what we observed in this study, data con dentiality is often referred to as a great concern in longitudinal studies in which inclusion of personal identi ers (e.g. name and address) is required in order to assure a proper record linkage and an active follow-up (39,40). This issue, strongly emphasized by women in our study, can be considered a structural barrier potentially resulting from the existing punitive laws and high levels of stigma and discrimination around injecting drug use in Iran (41).…”

“…In addition, creating a positive and supportive environment for people was mentioned to be the key to build trust between PWID and the health sectors and therefore help them easily recruit others to research studies. Establishing and maintaining trust has been shown to be fundamental to success in studies of key marginalized populations (39). Peer recruitment methods like RDS, strategies to address the needs of population of interest, and the researchers' developing a good reputation among the studied population have been cited as a few strategies that build trust between researchers and PWID (39).…”

Barriers and motivators to participation and retention in HIV/HCV cohort studies among people who inject drugs; A community consultation in Iran

“…In addition, creating a positive and supportive environment for people was mentioned to be the key to build trust between PWID and the health sectors and therefore help them easily recruit others to research studies. Establishing and maintaining trust has been shown to be fundamental to success in studies of key marginalized populations (37). Peer recruitment methods like RDS, strategies to address the needs of targeted population, and the researchers' developing a good reputation among the targeted group have been cited as a few strategies that build trust between researchers and PWID (37).…”

“…Data confidentiality is often a great challenge in longitudinal studies in which inclusion of personal identifiers (e.g. name and address) is required in order to assure a proper record linkage and an active follow-up (37,38). This issue, strongly emphasized by women in our study, can be considered a structural barrier potentially resulting from the existing punitive laws and high levels of stigma and discrimination around injecting drug use in Iran (39).…”