DO YOU TRUST ME? Challenges and methods of trust-building among research participants in Kampala, Uganda

By Justin List and Hassard Sempeera¹

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Community-based research projects provide critical information needed to reduce health disparities and to ensure that the delivery of health care is culturally appropriate and relevant to families in the communities where they live. In socially and economically disenfranchised communities, such projects give voice to those whose voices often go unheeded.

Conducting research in low-income countries presents unique challenges that community health workers and other researchers around the world navigate every day. For example, participant poverty and low education level often requires increasing amounts of time and explanation by research teams. The ferocity of the rainy season and other disruptive weather patterns frequently restricts access to participants while creating havoc in their lives. And even with the best intentions, culturally insensitive questions work counterproductively in the community.

Although these broad issues can greatly impact research, one of the most important issues that can set the tone for research in a community is the formation of trust between community members and the research team. To us, the idea of “community trust in research” means: (1) to what extent the people living in a particular community feel secure and safe participating in a given research project; and (2) to what extent do these same individuals feel comfortable engaging with researchers about their ideas and concerns.

In this article, we talk about the interface of research and trust based on community health worker (home health visitor) experiences in Kampala, Uganda. We discuss potential difficulties of establishing trust in a community, strategies for establishing trust, measuring trust level and creating an environment to maximize participant involvement and recruitment.

Difficulties in establishing trust

Some population-specific issues can create difficulties in establishing trust. For example, certain cohorts of people may feel over-researched; this may include groups such as people living with HIV/AIDS, ethnic minorities, refugees, and homosexuals². Members of these groups may feel over-researched in an environment where they have limited access to health care but find themselves sought after for research. Depending on a person’s previous encounter with researchers or stories circulating in a community about a negative research experience, a potential participant may meet well-intentioned researchers with mistrust³ In our project, we had a participant who ended up running away from both authors moments before we arrived, because according to our community guide, “her neighbor told her that researchers return to track you and lie about HIV status.” This participant had HIV-negative serostatus and was supposedly told by her neighbor that “research teams lie so they can do more tests before finally telling ‘the truth’ – that you have HIV.”

If previous researchers in a community do not follow up appropriately with participants or do not thoroughly explain the research process, establishing trust for subsequent researchers can prove all the more difficult. In such scenarios, violations of research ethics and policies occur. Yet, the damage to community trust with outside groups can run even deeper. If researchers promise to follow-up and do not or provide transportation reimbursement when participants go to and from clinics where the study is conducted and do not, trust with researchers can be eroded for years in a particular setting. For example, in one of the zones of Kampala, the home health visitor (HHV) team was told by community members that a previous group of researchers had arrived and “done some tests” but “never came back with results or other information.” Subsequently, there were days where our team had trouble recruiting participants for our study – a problem that was not encountered in most other zones. However, by the end of the recruitment period in this particular zone more participants enrolled in the study; this was accomplished through dedicated effort as the team’s presence increased and community members talked amongst one another about positive experiences.

Another factor that can make it difficult to create a solid foundation of trust is potential participant misunderstanding of the dichotomy between research design and clinical intent. On one occasion, both authors were in one zone of Kampala following up with a participant. One of the participant’s friends approached the authors and said in Luganda (translated), “I am sick, too. I need care. Why are you seeing just him? We all need care.” Both authors agreed with him in principle and understood his concerns. The research-clinical divide as seen by some community members in a health-resource-poor environment can be difficult to navigate when one sees a neighbor enrolled in a study when others, including oneself, are not enrolled. Although this problem has been relatively minor for us, it nonetheless can make it difficult to establish trust in general.

Illiteracy, widespread in many parts Uganda and worldwide, can also prevent a trusting relationship from forming. Illiteracy can contribute to mistrust if a researcher does not adequately explain a research study at a comprehension level appropriate for each participant. Another aspect of this occurs when potential participants refuse to participate because of their fear of exposing their illiteracy to the researchers, or if they see if their illiteracy as a vulnerability that opens them to exploitation. Although this was a rare occurrence for our HHV team, one of the authors (HS) had an encounter with a community member where the participant (who could not sign her name) refused to give her thumbprint as a signature to informed consent after initially showing interest in participating. This community member said (translated from Luganda), “You use us illiterates to get what you want. After all, we can’t read your documents.”

Many other issues affect the formation of trust, including the researcher’s communication style, translation difficulties, intimidation, and unequal power relations between research and participant. Although the list of elements that contribute to mistrust is quite extensive, there are a number of practical, inclusive methods that strengthen trust between researchers and community members in participatory research, which we present here.

Strategies for establishing trust

There are two levels on which establishing trust in communities can be maximized. At a broader level, research involving researchers from both high-income and low-income countries should reflect local research needs and priorities identified by researchers and community members. At the community level, involving as many respected local community members and gatekeepers (e.g., religious leaders and local council members) as feasible and the use of culturally appropriate questions, translations, and responsiveness to concerns should be built into the structure of the project.

In one of the research studies in the research collaboration in which we are affiliated, our research team involves a group of formal and informal community leaders. Kampala is divided up into five divisions, 128 parishes, and hundreds of zones. We contact community leaders at the division, parish and zone level weeks before conducting research in a particular zone. Furthermore, the LC (local council) chairperson of the zone level helps the HHV team integrate with the particular community through the election of local community guides to help the team navigate the community to seek participants. The guides and chairperson help to build community awareness of the upcoming presence of the team. The day before the HHV team starts seeking research participants in a particular zone, the team meets with the LC chairperson and discusses relevant issues. This approach helps increase the community’s level of comfort with the researchers’ presence.

Probably most importantly, the HHVs interview and travel the community with a patient, deliberate, and receptive approach with regards to the concerns and questions of community members. They also provide health education per the guidelines of the research protocol which also enhances trust. Since the HHV team is almost exclusively composed of Luganda-speaking Ugandans, potential problems with cultural nuances that may not be known to outsider health workers are largely avoided.

The comprehension and accessibility of informed consent by research participants is another cornerstone of trust-building in a community. In one of our studies, participants can give consent to all or some of the testing procedures, for example. Understanding the wishes of potential participants and having patience with explanations where needed is a crucial feature of trust-building with community members.

Informed consent is more than merely a signature in our setting. It serves as a way of acknowledging an individual’s autonomy, choice, and voice. Many participants who live in poverty in the settings we visit may not feel those personal attributes honored in their daily lives, such as women and others who are often marginalized. The subtleties of trust-building can be shaped by something as simple as the way a researcher approaches the explanation of the informed consent form or in her or his response to participant comments and concerns.

Measuring trust level

Determining the trust level among a community being sought for research is not an exact science. We believe that there are markers to gauge it beyond token remarks by community leaders and the implicit assent conferred by informed consent procedures. At least three markers can indicate initial and ongoing trust formation.

First, at the time of gathering informed consent, participants may convey trust or exhibit trust-building opportunities through questions that they ask the researcher. Such questions asked of or comments told to our research team include here translated from Luganda: “Wouldn’t it be a missed opportunity for me if I missed this research?” and “I think that this research study is good for our community and society.” Comments like these may suggest active participation in the research process rationale. They also suggest that the informed consent and HHV team provided enough information to generate such responses.

Second, how participants convey their experiences to other community members can be a very useful gauge for understanding trust formation. If already enrolled participants encourage other community members to enroll, this suggests that trust has been established. Given that the communities in Kampala tend to be close-knit, our team feels that this is a particularly good marker of trust, since community members do not expect their neighbors to engage them in something that may harm them in any way.

Third, the degree of active participant involvement may help gauge trust level. For example, we feel that participants who keep their appointments for studies (e.g. in immunological and pharmacological studies) are engaged with the research process partly due to their high level of trust. Especially because these participants have daily barriers exceeding those with more resources, an active level of engagement may indicate a sense that they are part of something important for themselves and their community. Similarly, the HHV team members have received calls from participants to confirm their appointments and in some studies, their transportation arrangements. Finally, while medical therapy adherence represents a constellation of complex factors at play, adherence can in some cases also help inform a research team’s assessment of trust levels.

Creating an environment to maximize participant involvement and recruitment

Based on our experiences and consultation with the extended home health visitor team with which we worked, we agree with the ethical goals of community participation described by Kassem et al⁴. These include building trust, enhancing community beneficence through community involvement in the research process, protection against harms, distributive justice of burdens and benefits of research among community members, and distinguishing between community consultation and consent in the research formation process. Indeed, our article takes as presuppositions that rigorous ethical standards and excellent communication are implemented.

Using these and related principles as a framework for conducting responsible research, establishing trust in a community demands more than simply clear informed consent. The research rewards resulting from trust between researchers and participants in the context of participant protection and ethical research practice, allow a mutual relationship to promote better individual and public health. It takes a collective effort among all stakeholders to build a better health care environment. Community members who truly feel part of that process participate in the train of events in which research data leads to more informed and improved health policy. The history of our research collaboration here in Uganda continues to demonstrate this year after year.

Justin List, MAR, is a medical student at Loyola University Chicago – Stritch School of Medicine completing a NIH/Fogarty International Clinical Research Scholar training fellowship in Kampala, Uganda during the 2008-2009 academic year. He holds a masters degree in ethics. He can be contacted for questions or comments at jlist@lumc.edu.

Hassard Sempeera is a home health visitor team member of the community-based research team with the Makerere University-Case Western Reserve University Research Collaboration in Kampala, Uganda. He holds a diploma in registered comprehensive nursing and is currently applying to medical school. He can be contacted at hassardsempra@yahoo.com.

References:

1 We would like to especially thank the home health visitor team members for their input as well as Drs. Christopher Whalen and Juliet Ssekandi for their thoughtful comments. This work was supported in part by the Fogarty International Center, National Institutes of Health (Grant #R24TW007988, Fogarty International Clinical Research Scholars Support Center at Vanderbilt-American Association of Medical Colleges).

2 Greene-Moton E., A. Palermo, S. Flicker, and R. Travers. “Unit 4 Section 4.2 Working Towards Trust.” http://depts.washington.edu/ccph/cbpr/u4/documents/section.pdf. Accessed on 11 November 2008.

3 List, J.M. “Histories of mistrust and protectionism: disadvantaged minority groups and human-subject research policies.” American Journal of Bioethics 5, no. 1 (Winter 2005):53-6; author reply W15-8.

4 Kassem H., F. Rab, A.A. Zeid, M. El-Setouhy, and H. Silverman. “Beyond Research Ethics Committees: Acceptance by Investigators and Involvement of the Community.” http://www.globalforumhealth.org/filesupld/forum10/F10_finaldocuments/posters/Kassem_Heba.pdf. Accessed on 11 November 2008.

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