How Can HIV Nurses Help Dissolve Mistrust Between Patients and the Medical System?
When we talk about people who fall out of HIV care in the U.S., our focus is often on the logistical or practical obstacles that prevent a patient from being connected to medical providers or retained in care. We can easily overlook the issue of mistrust, which is extremely common—and particularly so within the communities most heavily impacted by HIV, including Black men who have sex with men, Latinx men, women of color, and other people who are marginalized within American society.
For many people on the front lines of HIV medical care and clinical services, mistrust is a daily reality. As critical partners in the HIV care response, nurses often bear the brunt of this doubt, and they can find themselves mediating relationships between patients and physicians, as well as clinical staff.
At the Association of Nurses in AIDS Care conference in Washington, D.C., in late 2021, TheBodyPro asked meeting attendees—who work in clinics and care facilities across the U.S.—to share the strategies and tactics they use to gain the trust of their patients and help ensure they remain engaged in care. Here is an abridged collection of their responses.
All interviews were conducted by Larry Buhl; transcripts are edited for clarity and length.
Orlando Harris, Ph.D., FNP, M.P.H., Alameda, California
Harris is an assistant professor of community health systems at the University of California-San Francisco School of Nursing.
To get across the mistrust issue, I think it’s a couple of things. One, you have to acknowledge the harm that was done, whether it be historical or contemporary: You have to say to patients, “Yes, African Americans—or people of color—are treated poorly in health care. Yes, Black maternal child mortality rate, it’s a huge disparity. And it’s real.” I think by naming it and acknowledging it, that’s halfway [to addressing] the problem.
The other half is to then, you as the provider—whether you’re a person or of color or whether you’re white—show empathy towards that person who is expressing not trusting. When we think of medical mistrust, we often think about Tuskegee; we think about historical malfeasance. And we never talk about me [as a patient] walking into an office and how you perceive me in treatment today. And I think that’s the major problem.
The other piece to also consider—when we talk about [a lack of] inclusive language, which further adds to the distrust—is patients now are able to read their own medical records through EMR systems. When you come and see me, and I write a note and I talk about you being confrontational, or you being violent towards me, or intimidating, you’re then on the other side reading that. And it further erodes trust.
I think those are some of the things that we really have to talk about as health care providers that we don’t do.
Lisvel Matos, FNP, M.S.N., Durham, North Carolina
Matos is a Ph.D. student at Duke University School of Nursing.
I think the biggest part of getting over that barrier is understanding that we may not always understand the reasons for the mistrust, but that we need to approach conversations with patients as nonjudgmentally and as open as we possibly can.
Many times patients come to us looking for advice, but they’re also scared of being judged, of experiencing stigma. And many of the things that they need to share with us are personal and sometimes-taboo topics that we as a society do not discuss.
I think the biggest thing providers can do is to approach conversations with humility and with sensitivity, so that these individuals begin breaking that ice and feel comfortable sharing their experiences and their stories with you.
Jeffrey Schaffer, RN, Provincetown, Massachusetts
Schaffer is an HIV nurse case manager and manager of an STI express clinic at Outer Cape Health Services.
I use patient-centered care and also trauma-informed care, where I don’t say you “have to” do this, or you “should” do this. It’s always as an option, so that they feel like they have options in health care and that they’re in charge, or that they’re at least part of the decision-making process.
I think some of the sexual health history questions are a little bit invasive. The questions that we ask, I like to challenge and say, “What’s the purpose of that question?”
So, for instance, a standard question in a sexual health history is, “How many partners have you had in the last six months?” My question to providers is, “What are you going to do or not do for that person based upon that discrete number that you get back from them?” If someone answers it with “two” or “20” or “200,” what are the differences? I don’t really get a very good answer, if I get an answer at all. In fact, most providers go, “I have never thought about it like that.”
Is there a way that we can ask that question in a more patient-centered and trauma-informed-care way? “Do you have multiple partners?” is a different question than “How many?”
We also teach them how to ask for services in the future, and how to hunt for services. So, like, I’ll say, “Where are you going after Provincetown? You know, you can go to Google and put in “STI testing near me” or “PrEP near me,” or you can go to this website or that website. Or if you go somewhere and you can’t find a place, call me and I’ll see what I can find, and I’ll direct you to a place.” As a community member, just letting them know.
One of the big histories of gay culture is your chosen family. I feel like they’re sort of extensions of the chosen family, where I’m always going to be there for you, to a certain degree. I’m always accessible in some way, shape, or form, for you to say, “Hey, I’m in Utah right now and I can’t find a place to get services.” I can use what I know and direct them to those services.
[It’s] the same thing that happened when I came out, where elders or people who had been out gave me direction and helped me. I want to keep that; I want people to know that there’s somebody in their corner and that I’m not shaming them. I’m here to help them stay engaged in care and do whatever they want to.
Justin Alves, RN, M.S.N., Boston, Massachusetts
Alves is a clinical nurse educator and AIDS-certified registered nurse focusing on addiction at Boston Medical Center.
I work with mostly people who use substances, whether it be alcohol, fentanyl, crystal meth. There is—I don’t even think it’s mistrust; I think it’s distrust. It’s not that they don’t trust the system; it’s that the system has systematically treated them poorly and abused them in many cases. I think it is earned distrust, that somebody made them feel unwanted or not worthy.
I view my job first and foremost as making you feel like you’re worthy of care and love and all those things. Because I’m never going to get you to come back to clinic if you think bad things are going to happen when you walk through the door.
Diamond Hale, M.H.S., Baltimore, Maryland
Hale is a clinical nurse leader program candidate pursuing an M.S.N. at the University of Maryland School of Nursing.
Mistrust is a huge thing in the Baltimore community. We’re sitting in institutions that have history with Henrietta Lacks, with common mistrust in health care professionals.
A lot of times, [responding to] it comes from humility; it comes from being able to meet them where they are, in community-based practices, in community health fairs. It’s being able to be open and just vulnerable enough with them in order for them to be vulnerable enough with you.
It’s increasing that knowledge, working on health literacy, especially in the Black and Brown populations that we serve.
It’s being able to work in a nonjudgmental space and being able to create those atmospheres that actually allow people to be honest with you, to allow them to say, “I don’t know what HIV is. Like, people have mentioned it, but I don’t know what it does. I don’t know what it can do.” And being able to be vulnerable enough to allow them a space to be able to get that knowledge, and that be the forefront of the thing.
It’s like, “I know you may not have questions. But here’s my card, so you may be able to ask questions later as they come up.” It’s being able to be accessible for the community.
Meeting them where they are really does come into practice when you create those spaces to let them ask those questions that someone else may have made them feel silly for thinking about.