Mental wellness & people living with HIV: a call-to-action for practitioners, policy-makers, neighbours and friends (Part 2)
After my conversation with Lynne, a Peer Researcher with the Ontario Stigma Index study, I had more questions about a clinician’s perceptive, like what did mental health support look like? What were some of the barriers to providing good care? And how could I, as a friend, provide an empathetic listening ear when needed?
All of these questions and more were answered during a conversation I had with Dr. Adriana Carvalhal, an Associate Professor and the Head of Adult Division at the Department of Psychiatry, Queen’s School of Medicine & Psychiatrist-in-Chief of Kingston Health Science Centre.
If you missed Part 1 of this blog series, read it here now.
[The below transcript is excerpts from my conversation with Dr. Carvalhal. The text was edited for brevity and clarity. An estimated 10-minute read]
“Because the virus affects the brain right from the beginning–from when people are infected,” is the reason Dr. Carvalhal described HIV as “a mental health issue”. She also explained that in addition to the cognitive disorders that people can later develop due to HIV infection, the psychosocial aspects that go hand-in-hand with living with a stigmatized health condition can be quite pervasive.
Dr. Carvalhal noted, “So if we were to go to an HIV clinic and screen for psychiatric illness at any given time, it is likely that 40-50% of people would meet the criteria for some psychiatric illness. And if you compare that with the general population, the most we’d see is probably around 15 percent. So it is at least three times more common to observe mental health problems in people who live with HIV.”
Editor’s note: in the conversation below, my questions and prompts are attributed to the “Interviewer,” and Dr. Carvalhal’s replies come after her name.
Interviewer: And with the UNAIDS 90-90-90 target, you mentioned that the remaining “10-10-10” often involves people experiencing mental health issues. Why is good mental health such a critical component for reaching this target?
Dr. Carvalhal: Yeah, so if you think of all the steps in the HIV Care Cascade, we know that if someone has a mental health problem, they’re less likely to seek testing. So in the first 90%, you have 10% of people who definitely have mental health problems but unfortunately do not seek for testing. Very often these conditions are not well identified.
12% of participants from the Stigma Index in Ontario said that over the past 12 months, they chose not to seek health care because of their HIV status. People with significant internalized & enacted stigma were even less likely to seek health care, and noted symptoms of depression and anxiety.
And then, if you go to the second 90%, if you have a mental health problem often you are less likely to be on antiretroviral treatment. Sometimes there’s a concern about adherence to treatments, so starting the antiretroviral treatment is delayed. Or patients did not engage because of their mental health—imagine you have experienced partner violence. Your life could be in complete turmoil, right? It will be difficult for this person experiencing violence and trauma to have the mental space to attend appointments. The consequence is that without treatment they’re going to be less likely to achieve the undetectable plasma viral load.
It’s not only in the HIV field; in general, only 50% of people who have a mental health problem are going to be identified, and about 50% of those who are identified receive the right treatment and access to professionals.
When I say “professionals,” I’m not only talking about psychiatrists, but also counsellors and social workers. Many conditions that we see in psychiatry, such as depression and anxiety, can improve with treatments like mindfulness and cognitive behavioural therapy. We know these interventions are very effective for mild to moderate conditions and are considered the first line of treatment, but unfortunately, in most clinics patients do not have access to these.
On top of that, even when clinics do have social workers, they are so overwhelmed with all other things they have to deal with—like housing. Their availability to provide interventions gets limited further.
Interviewer: When I spoke to Lynne during her interview, she told me she is only allotted 15 minutes to see her HIV specialist on an annual basis. And in another vein, people are accessing the ER ["Emergency Room"] just to get mental health support and treatment. Can you can speak to the disjointedness of those two healthcare systems, and to some of the barriers you experience as a healthcare provider?
Dr. Carvalhal: Once again, this is a problem goes beyond HIV patients or the HIV field. It’s definitely a system issue with a lot of reasons behind it, and it’s not only related to lack of resources and how mental health is funded. And unfortunately, often the first time the person can see someone, as Lynne was saying, is in the ER. And I always think the number of people presenting to the ER is the best moment for us to see how well or how badly our system is doing.
When people receive the right care in the community, the number of ER visits is lower and those going to the ER are the ones who will most likely require a psychiatric admission due to the severity and/or complexity of their mental disorder. If people do not receive the right care in the community, the disease gets worse and the only option is to go to the ER.
Interviewer: In a perfect world when mental health care is integrated with HIV care, what does that looks like?
Dr. Carvalhal: I think the beauty of integrating mental health with HIV, more than increasing access, is that it helps to decrease the stigma associated with having mental health issues. From my experience working at St. Michael’s Hospital, patients would feel more comfortable with saying they had HIV, compared to my work in Kingston, where I found having HIV is more difficult to disclose than mental health. In a small community, HIV is probably way more difficult to disclose than in a bigger city.
I can give you an example of the benefits of integrating mental health care with HIV care. In the HIV clinic that I work in, I saw someone who had bipolar disorder. The diagnosis required specific treatment for bipolar and I couldn’t prescribe that treatment because of the antiretroviral medication they were taking. So I talked to the HIV doctor who was in the clinic that day, and he was able to switch the HIV meds to something that I could prescribe the medication for bipolar with.
Imagine if both professionals were not in the same location: this would probably take 2-3 months for this person, between professionals back and forth, who often don’t communicate with each other. In my example, the patient was in the hospital for probably an hour and he left with the right treatment for bipolar and the right treatment for HIV.
Interviewer: Are there other strategies used in your professional practice to help reduce the stigma and increase access to care?
Dr. Carvalhal: As I mentioned before, a lot of people living with HIV experience different forms of trauma in their lives and at different times, so it’s important, egardless of who is seeing the patient, to have trauma-informed care as a framework. Psychiatrists and mental health workers are very familiar with this way of thinking. It is not always the same for nurses and other physicians. So it can take a while for us in mental health to help the team see with this frame of mind when we are working in a clinic. But we get there—we all learn with each other. I learned a lot about HIV over the years because I was in that clinic with the nurses and other physicians. This demonstrates again how the integration of mental health is beneficial.
Interviewer: In addition to what healthcare providers can do, are there ways in which people can help reduce some of the stigma that’s often associated with HIV and mental health?
Dr. Carvalhal: Well, I think all these campaigns—we have more and more, like “[Bell] Let’s Talk”—help. I really think that when people who are visible in the community disclose themselves it’s a huge plus for those who don’t have a voice. And taking any opportunities we have in our daily interactions to voice what we think helps, too. I think I do that in any situation, if I can educate others, for example.
I’ve been working in HIV since the early ‘90s, a long time ago and a time when things were very different. I remember when I said I was going to work in the field of HIV my family asked me, “Do you think it’s safe”?
I will never forget this question. And I think with the first few months of COVID19, we have had a little taste of living with an illness that we don’t know much about. It was like HIV in the ‘80s and ‘90s.
But again, the knowledge evolves, and in every interaction we can educate others.
And definitely, I think people who are open about if they’re living with HIV—this has power, when people disclose.
Interviewer: And how about for the other person? When you’re in a position where someone else is telling their story and it’s very powerful and very raw…whether they are disclosing their status or they’re struggling with their mental health. I think the person hearing that doesn’t always know how to respond or how to react. I think it’s our tendency as humans to say, “Oh it will be okay, you’re so strong,” and try to fix the problem or try to make that person feel better—to make ourselves feel better. What advice would you give that person as a listener?
Dr. Carvalhal: I would say that empathetic listening is one of the techniques we learn in mental health. And don’t think we aren’t learning every single day. Don’t think I never said anything terrible back or ever asked the wrong questions…or even made the wrong comments. I remember one patient later told me, “When you said that to me, this is how it impacted me…” And we then had an opportunity to talk about how that person felt in that moment.
I would say the most powerful tool is to be able to put yourself in the other person’s shoes.
Having empathy doesn’t mean you have to go through what the other person did, but it's about having the capacity to be an active listener and internally imagining how you would feel if you were that person. And often it’s enough to even acknowledge this and say,“I was not in this situation, but I imagine if I was, I think this is how I would feel.”
One tip is to be an active listener and to be able to have empathy, even in tough times; to help people go through those tough times. And I have to say, probably besides being an active listener and having empathy, I think the third most important thing for me is supporting people regardless of the decisions they make.
Often when you are supporting someone, yes you put yourself in their shoes, but you think that you might be reacting or managing whatever’s happening in a different way. But as a professional, it’s my responsibility to support them regardless of the decisions they make.
Interviewer: Well, thank you, I think that’s a very productive note to end on. I always like leaving the reader with things that they can do—seeing themselves as part of a solution.
Hey reader! Is there something you can do to contribute to a more inclusive and supportive community?
What are ways that you can have a conversation with a friend, a neighbour, or a person in your community? You can consider making note of tips from the above conversation. Being an empathetic listener and meeting people where they’re at can help those around you feel included.
Do you want to share your story or experience on a wider platform? The Positive Effect is the perfect way to do that! Submit your story here.
Visit The People Living with HIV (PLHIV) Stigma Index online for more information about how the study is being used by countries across the world.