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Domain 4 intro.mp3Click the play button to hear an audio version of the text below.
Ok. Breathe. You’ve made it this far--just a little bit to go.
We’ve discussed the structural factors that influence participation (Domain 2) and offered strategies for addressing those barriers (Domain 3). Here in Domain 4, our goal is to provide guidance for how to employ those strategies, using vignettes to demonstrate how the strategies can work to overcome barriers to participation.
Note: We offer a wide variety of resources for effective communication in Domain 5, in the table for Engagement and Communication Methods.
It is normal--indeed, expected--for community members to feel ambivalence about participating in a clinical research project. Recognizing, understanding, and respecting this ambivalence when discussing clinical research opportunities is a good place to start. From there, you can begin to:
Engage community members in deeper conversations about research and health beliefs.
Impart information about research in a collaborative style.
Focus on the value of genuine relationships as key for retention.
However, you may be wondering: Isn’t communication just talking to someone? Why spend an entire domain on it?
Communication is complex and subtle. It involves both the words we use and the context in which we use them. Thinking about text and context is important for communicating well with participants.
First, let’s address text: the language we use. For example, participants typically respond better to a plain language approach. Avoiding jargon can help participants feel more comfortable with a researcher. Furthermore, it can help address inherent power dynamics when a clinical researcher engages with a research participant.
But communication is about more than just text, it is also about context: where and how we use that language. This means thinking about nonverbal means of communication: the clothes we wear, the places we meet with participants, the frequency with which we meet with participants, and the channels we use to communicate. What are the preferred methods of the community for how we communicate back to them? Emails? WhatsApp? Face to face communication from health workers and community leaders? It can help to identify a "champion" in the community, someone who recognize the value of your work and can help you create a context in which community members feel comfortable receiving the information you need to share.
By thinking about the language we use and where we use it, we can better understand how power dynamics shape interactions with participants. See two brief vignettes below to understand how these dynamics may play out when carrying out a clinical trial that seeks to engage diverse populations. As you read through, think about the constraints you face as a researcher, as well as identifying where you might be able to implement what you've learned with this toolkit most effectively. Obviously these are hypothetical examples; you may face situations quite different from those presented here. However, we hope the themes and strategies resonate regardless of the particularities of your site.
Vignette 1: The Clinic
Vignette 1: The Clinic
Vignette 1.mp3Click the play button to hear an audio version of the text below.
The air conditioning blasts in the clinic waiting room. Xochitl, a twenty-two-year-old single mother who has struggled with substance use disorder since she was seventeen, pulls up her hood to hold off the chill. She was laid off recently, and heard she could make some extra cash through participating in a clinical trial about a new drug to treat substance use. Her four-year-old son, Jacob, squirms next to her, gaping at a man who entered the clinic demanding a prescription for more painkillers while threatening a nurse. As the nurse tries to address the man with a security guard at her back, Xochitl hears a voice call out: “Zoch…Chochi?”
Long accustomed to this name-butchering ritual, Xochitl and Jacob enter the small examination room. It’s even colder than the waiting room. After a few minutes, Dr. Jones walks in.
“Hello, Chochi, my name is Dr. Jones. Thank you for your interest in our clinical trial. I’m sorry, could you please remove your hood? Thank you, I like to see your whole face! We will be administering doses of hydroxamethalcortisone at variable intervals over the course of the trial period, with an approximate duration of 3-9 months. You must come to the clinic three times a week for us to administer the dosage. This is a randomized controlled trial, and you may or may not be in a placebo group. The drug works on the neurotransmitters that control dopamine levels. There are some potential side effects. It may cause vomiting, diarrhea, rash, heart palpitations, fever, and, in extraordinary cases, death. Don’t worry, you will be monitored closely throughout the study to ensure your safety. We will do a full medical history to control for worst-case scenarios. Do you have any questions?”
He asks this as he hands her the forty-page informed consent packet. Xochitl notices the 10 point, single-spaced writing.
“How much will I get paid?” Xochitl asks, thumbing through the pages.
“$25 per visit. I know it’s not much, but compensation is determined by the IRB at the university. I have very little control over that, unfortunately. Bureaucracies, you know?”
Xochitl glances at Jacob squirming next to her. Sighing, she nods her assent.
“Great, thank you, Chochi. I’m sorry, how do you pronounce your name? It’s beautiful, I’ve never heard it before.”
“So-cheel,” she says, and smiles. “It was my grandmother’s name, too.” She had other questions, but Jacob began to complain about the cold air in the room. She sets the packet on the table to pick up Jacob.
“So-cheel. Great. The nurse will come in with all the paperwork. Cute kid! The nurse will answer any other questions.” Xochitl hears more from the nurse, and signs the waiver without reading it. $25 is $25.
After two months participating in the trial, Xochitl never saw Dr. Jones again. She didn’t feel any effect from the treatment. She thought about that word Dr. Jones used: placebo. She looked it up on Wikipedia: “A placebo is a sham substance or treatment which is designed to have no known therapeutic value.” “A sham?” she thought, “Why would they give me a fake drug?” She felt like she had been taken advantage of and she never showed up again.
Vignette 2: Monica's Daycare
Vignette 2: Monica's Daycare
Vignette 2.mp3Click the play button to hear an audio version of the text below.
Monica’s daycare was the de-facto town hall. It was a bilingual childcare that doubled as a home apothecary that provided folks with herbal tinctures and teas that she learned from her grandmother. People knew that it was a place where they could find remedies for physical and emotional ailments, and they felt safe in the space.
Monica’s daughter, Xochitl, had a young son and was struggling with dependence on painkillers that she had been given at the local clinic to deal with lingering pain from a motorcycle accident. She lost her job at the gas station for missing too much work. Xochitl needed some cash, and didn't know where to go. Monica and Xochitl’s relationship was strained, and Xochitl couldn't leave Jacob alone.
Dr. Jones was anxious to begin his clinical trial. He hoped his new drug, hydroxamethalcortisone, could address substance use disorder. He read that this town had one of the highest rates of substance use disorder in the region. The trial would be a chance to help the community and advance scientific research.
Dr. Jones heard about Xochitl from Danny, who worked at the local bar. Dr. Jones wanted to get to know the community, and so went to the bar where people felt as comfortable as possible. Danny and Xochitl had been friends since childhood, and Danny was worried about her after she lost her job. When the doctor mentioned that there could be money involved for participating in the clinical trial, Danny texted Xochitl right away. Susana overheard Dr. Jones and Danny. She worked at Monica’s daycare, and knew about Xochitl’s struggles. The next day, at church, Susana mentioned to Monica that Dr. Jones was in town doing a clinical trial for substance use disorder. Monica, who went to university in the city, was ambivalent about clinical trials and Western medicine in general. But she also wanted something that could help her daughter.
Dr. Jones learned about the daycare's role in the community and decided to ask for her support. “I’ll help you out, Dr. Jones, if you agree to some rules.” Dr. Jones would be in control of the data collection, analysis, and other technical aspects of the trial. But he would be accountable to Monica, who would recruit participants, communicate the ongoing results of the trial, and explain the technical jargon to folks. Monica would also be a person to relay concerns from community members to Dr. Jones. Dr. Jones, agreeing to these rules, said to Monica, “I also have a rule: please call me Eric.” Monica felt hopeful.
Over the course of the trial, participants met once a month at Monica’s to discuss the trial's progress. They recruited folks on Facebook and WhatsApp. Eric, who had commitments back at the university, would connect digitally when he couldn’t be present. Not everyone bought into the trial, but a solid cohort of participants took ownership over the process, including Xochitl. Monica was thrilled. It was the first time in years Xochitl and Jacob had come by the daycare.
“Hi Xochitl,” Eric said as she walked into the first meeting. Surprised, Xochitl looked at Monica and said “This dude pronounced my name right on the first try!” Monica and Eric laughed and welcomed Xochitl and Jacob in. The trial has a long way to go, but everyone looks forward to continuing it through to its end.
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