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One emerging trend in social-behavioral research studies involves the use of peer researchers to better engage a particular community or vulnerable population.
A chief concern of IRBs reviewing such community-based participatory research (CBPR) proposals involves the training of peer researchers and ensuring they fully understand the rights of participants, notes Douglas Bruce, PhD, MSW, assistant professor in the department of health sciences at DePaul University in Chicago.
Bruce has been involved in a study that looks at sexual minority male youth experiencing homelessness and their resilience despite multiple lifetime traumas.
Some of the youth involved in research studies spoke eloquently about being tired of being asked about their risk behaviors, Bruce notes.
“There always was an emphasis on risk and the ‘bad’ things they do and not having people ask them about how they keep themselves safe or strong,” he adds. “We were very interested in learning how they stayed safe under difficult circumstances, so in keeping with CBPR principles, I thought it was very important for youth themselves to be part of the research team.”
When youths are trained to be part of the research team for studies involving youth, there’s a potential advantage in having insiders discussing issues to which members of the outside world, such as academic researchers, may not have immediate access, Bruce explains.
Alternatively, it also happens that people will be less open with their peers than outsiders out of concerns around confidentiality, so research training is needed to ensure the best possible experience for research participants, as well as for the community or peer researchers, he adds.
Peer researchers need human research protection training that includes specific examples and instructions for handling issues like confidentiality because they often are part of a small population in which stories can be told, Bruce notes.
“I have trained undergraduate and graduate research assistants in these kinds of issues, but now there are community members who are included in the research design and implementation,” Bruce says.
The youth community members often had limited education and had previously been research participants, he adds.
Bruce established human research protection program educational sessions that would work for these community members of the research team. The chief aim was to train inexperienced community research assistants in research ethics and to assess whether they were ready to be in the field, he says.
“Secondly, I’d introduce them to qualitative methods, and I’d assess them later,” Bruce says. “That was day one and day two.”
Here’s how it worked:
• Engage community members, relying on their research experience. “We started the education with a discussion of their previous experience with research,” Bruce says.
The education session included explanations for why the particular research was being conducted and how it was taking into account the resilience young people have demonstrated, he says.
“They are marginalized youth who have been studied quite a bit,” Bruce explains.
“There were many HIV risk studies they were part of, and needs assessment studies,” he adds. “They were reasonably savvy in terms of how research happens, but didn’t know how it was used or how we try to protect the rights of subjects, although they had all been through the informed consent process.”
The goal now was to break down the process for them and help them understand it in terms of the types of questions they would be asking peers and how this process related back to the ethical principles, Bruce says.
“Then, I presented a more didactic discussion of research ethics in general and opportunities to apply it to previous participation, as well as thinking about being potential interviewers,” he adds. “That discussion formed the basis of what they would be tested on as an indication of their ability to conduct research in a safe and appropriate way with their peers.”
The educational session also focuses on the meaning of vulnerability in research and the Belmont principles.
“Then we talked about qualitative methods and qualitative interviewing techniques,” Bruce says.
• Address literacy and contextual issues. Literacy is a big issue with some vulnerable populations, including the group of homeless youths, he notes.
For instance, the research term “beneficence” is an abstract word that the youths didn’t use or understand. But they did understand the word “benefit,” Bruce says.
So the training sessions have to include explanations and definitions that lead into life experiences that could serve as a frame of reference for the community members of a research team. “We talked about their own experience as research participants, being interviewed by researchers, and giving data but not being sure how it was going to be used or how it was relevant to their situation,” Bruce says.
“If we’re doing this type of research, it needs to be aimed at improving the lives of the youth we’re studying,” he adds.
• Explain what “vulnerable population” means. Training needs to address why the research community considers certain populations to be vulnerable, listing the groups of pregnant women, prisoners, children, sex workers, people with limited education, the poor, people with difficult access to health services, and those with mental illness.
“Those characteristics stretch across the youth population: They’re children; many have been in the criminal justice system; all are poor; many are sex workers, and some are pregnant,” Bruce says. “So I said, ‘You and your peers are by definition vulnerable participants, right?’”
Some of the youth being trained discussed, among their peers, use of illegal substances, sex work, and involvement in the criminal justice system, and how those behaviors place people at risk, he recalls.
“One youth talked about his hesitancy to talk about those kinds of issues in a research project that he previously participated in, and we talked about how we need to assure confidentiality and de-identify data,” Bruce adds. “We talked about how the interviews are recorded, transcribed, who validates transcriptions, and how we keep participants safely de-identified.”
• Cover three main principles. The first day of training covers the three basic principles from the Belmont Report:
- Respect for persons: The educational session went over why it is so important to have respect for research participants and to treat them with dignity. It also showed how people involved in human subjects research can assess autonomy and discussed how people have the ability to make their own decisions and choices.
- Beneficence: This philosophy of “Do no harm” applies to research in the risks and benefits area. Community researches are taught that a study should provide a maximum amount of benefit to society and sometimes to individual participants while it also reduces risks to research subjects. The educational session discussed potential risks of asking people something of a personal nature about their lives, recording interviews, and the potential for violations of confidentiality.
- Justice: This principle refers to ensuring reasonable and non-exploitive procedures that are administered fairly.
“I went through the three principles, followed by risks and benefits, and then I introduced them to methods of interviews and what content the interview would be like,” Bruce says. “They had input in that.”
• Provide examples of confidentiality issues. To explain what confidentiality means and how it might be different from privacy, Bruce used examples that would resonate with their own experiences.
Here’s one example: “Michael and Jason have a relationship, and both are participants. Michael asks you what the other one talks about in an interview. What do you do?” Bruce says.
The peer researchers discussed how the youths’ participation wasn’t anonymous because they knew about each other’s involvement in the study. So they discussed how the peer researcher could maintain each participant’s confidentiality, which means the researcher does not disclose any parts of the interview, and how the study’s reports would not include participants’ personal information.
If their participation was anonymous and one participant asked if the other had completed an interview, the peer researcher should not disclose information about who participated and who didn’t.
• Go over informed consent. “We spent 20 minutes on informed consent as a process and really emphasized it as a communication process between a researcher and participant, and it starts before research begins,” Bruce says.
“A lot of the youth felt informed consent was perfunctory, a form you filled out in order to get something,” he adds. “Others had questions about its purpose and were questioning some of the language and what certain parts of informed consent meant.”
They were told that the process of informed consent continues through the duration of the study.
Bruce encouraged the questions and pointed out that it was very important that the language be communicated in a way that the participant understands and that the peer researchers understand the information enough to paraphrase. He also taught them the teach-back method and emphasized that signed informed consent was waived for this population to maintain their privacy.
• Assessing competence. The last part of the two-day educational session included review of research ethics content and a 20-item quiz.
“After they completed and passed the quiz, we brought the draft interview instrument, and they took time to review it,” Bruce says. “We looked at whether this approach would get at the areas of interest the study was trying to investigate, the wording of questions, reading level, and relevance to their lives.”
This was a way to have the peer researchers apply some of what they learned and to encourage their excitement about being a part of the investigative team.
“I then did mock interviews the following week, where I was the person being interviewed,” Bruce says. “I was assessing their ability to stick to the semi-structured interview script and to deal with surprising situations by throwing curve balls at them during the mock interview.”
Bruce also observed their first interviews with peers, as well as debriefings with the interviewees post-interview to check in and see whether they felt their confidentiality was assured through the informed consent process and interview, he adds.