Shannon Weber, MSW: Leading With Empathy in HIV Care

Segment description: Shannon Weber, MSW, founder and director of PleasePrEPMe, delivered the opening keynote at ANAC 2019 on the importance of empathy when working with people living with HIV. Weber also discussed overcoming the barriers that still exist to ending the HIV epidemic and talked about the work she is doing through her organization PleasePrEPMe.

Interview transcript: (modified slightly for readability):

Contagion®: What role do social workers and nurses play in the care of patients living with HIV, and how do those roles interact with each other?

Weber: I think that we have often undervalue the role of nurses and social workers in terms of thinking about them as leaders as we look at ending the epidemic. There's really a lot of power and, by power, I mean the opportunity on the front lines [with] these patient care interactions and the inherent knowledge that frontline workers have that we need to inform how we make systems and structural changes to end the epidemic.

Contagion®: How do we combat burnout?

Weber: I know this from talking to people about the early epidemic and how many folks are no longer working in the field because they burned out. And then I know, from my work currently, that the this is a very contemporary problem as well. And so one of the things we need to do about burnout is to start talking about it before it happens instead of after it happens. When someone's burnt out, or when there's a crisis that happens, there can be a rush to sort of figure things out for that individual person. We don't really look at the systemic issues and the problems with the hierarchies and the issues with the systems that we've created that are creating this environment in which burnout is, frankly, an epidemic of its own.

Contagion®: Your presentation featured #ShowUpHard. Can you talk a bit about that mantra?

Weber: “Show up hard” is the name of the book I wrote, which is called Show Up Hard: A Roadmap for Helpers in Crisis. I really wanted to put a stake in the ground and just talk about how much guts and courage it takes to be empathetic and, really, for us to think about empathy as a muscle, and acknowledge the energy that it takes to be empathetic and to not be thinking about it as a soft skill or something that we can think about after the fact. But [one] that really gets a core part of what we can do. In fact, when it comes to medications or regimens or protocols, you can look that up, you can ask someone for that; you cannot outsource empathy. I want us to be able to tend to the strength and courage that it takes to be empathetic and acknowledge that, both for ourselves but also for others. And that will also lead to us changing the way systems work. Because we think of empathy as an extra thing or after the fact thing instead of the core part of the work that we need to do…that is what is leading to so much burnout.

Contagion®: During your talk, you showed a Cleveland Clinic video about having empathy that was so powerful and moved members of the audience to tears. Can you talk about why empathy is so important?

Weber: The video…it's so brilliant, and I show it for 2 reasons: 1) [It] helps us get really dialed in very quickly to what being empathetic is. That's what an amazing videographer storyteller does is they get you to see the world through someone else's eyes. And this video is a great example. It starts to help us see how we could leave our own worldview and go to see the world through someone else's eyes. It's an active process that I want us to acknowledge as part of that empathy is a muscle piece. But, secondly, I do it because it's so important for us to think about all the stories that we bring with us. That's what I said to the audience today was, “What would it look like if a video had been made about all of us as we traveled here, of the stories that we bring with us, both the highs and the lows and then what capacity does it take for us to sit with each other's stories, the brightest light and the darkest dark, and hold that for each other even as we go about this work of showing up hard for others?”

Contagion®: We’ve come a long way in battling the HIV epidemic, but there is still far to go. What are some of the barriers that exist to ending the epidemic?

Weber: There's been so much progress as biomedical interventions and science has been amazing in that regard. I think all of the gaps that remain are related to structural racism and systemic injustices. The work that remains is for us to look at how is it that we become people committed to anti-racism work? How is it that, as an epidemic, we're also committed to what causes that and the structural inequities? All of that is going to take empathy. And so that is, again, that commitment that we need to make to be willing to leave our own worldview, the stories that we've held so tightly to be able to go see the world through another person's eyes and then figure out how we're going to make that change that will allow us to be there and/or make it possible for the epidemic to be ended.

Contagion®: Can you tell us about PleasePrEPMe?

Weber: PleasePrEPMe is an amazing program with the most amazing team. We provide an online directory of PrEP providers that is searchable and location-responsive, and you can search by different filters and find a provider that's right for you. We have heaps of resources for different audiences, including providers and potential PrEP users, women, youth, trans women. And we also have an online chat navigation service for California and Arizona. So Monday through Friday, 9 to 5, in English and Spanish, [we] do online chat navigation.

It is a profound experience to be able to show up in that space and connect with people who are seeking sexual health or HIV prevention information online and provide them sex-positive advice with warm regard and help them get connected with resources that are right for them. Nurses are so well-poised to be leaders in ending the epidemic and it's important to acknowledge both the clinical expertise and wisdom but also this capacity for being deeply human and connecting with others. And I want to acknowledge the work that nurses have done today and really invite all of us to create a path for nurse-solid programs moving forward to help us to end epidemic