In this episode, expert patient navigators Shellye Jones and Lauren Jackson discuss the key take-home points of our online educational program on facilitating engagement in HIV care. Listen as they propose a framework for effectively retaining people in care.
In this episode, expert patient navigators Shellye Jones and Lauren Jackson discuss the key take-home points of our online educational program on facilitating engagement in HIV care and propose a framework for effectively retaining people in care. Topics covered include:
Presenters:
Shellye Jones, MSW, LCSW
Clinical Supervisor
Charles R. Drew University, Drew CARES
Los Angeles, California
Lauren Harris Jackson
Street Medicine Patient Navigator
Healthcare in Action
Los Angeles, California
Link to full program:
https://bit.ly/3Wh4Z1T
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This transcript was automatically generated from the audio recording and may contain inaccuracies, including errors or typographical mistakes.
Introduction
Hello, and welcome to the Clinical Care Options Infectious Disease podcast.
I'm your host, Jennifer Blanchette.
In today's episode, we'll be summarizing and synthesizing key take-home points from several case-based video module components of an online educational program titled Lost and Found: Breaking the Barriers to Engagement in HIV Care. I'm joined by our experts, Lauren Harris Jackson and Shellye Jones. For more information on our faculty and for a link to the overall educational program, please visit the show notes for this episode.
Now let's get started with Shellye Jones.
Shellye Jones (Charles R. Drew University of Medicine & Science): Hi, thank you for joining us. Welcome. My name is Shellye Jones. I'm a licensed clinical social worker. I've been working in the field of HIV since 1990. And I currently work as a program manager for a patient navigation program, as well as run our consumer advisory boards and mental health support program. Here at Charles R. Drew University.
Lauren Jackson (Bernard J. Tyson Kaiser Permanente School of Medicine): And hi, my name is Lauren Harris Jackson. I am a former street medicine patient navigator, who currently is enrolled in my first year of medical school at the Bernard J. Tyson Kaiser Permanente School of Medicine.
Shellye Jones: Today, we're going to follow up on the video module components that the CME program on supporting re-engagement of people who've fallen out of care presented previously. And we'll begin by talking about frameworks regarding three components that are essential for effectively engaging and re-engaging patients in HIV care.
First, we'd like to start by embracing a trauma-informed care approach. And this is really where you acknowledge how past trauma can affect a patient's engagement in care and ensure that you provide a safe and supportive environment every single time that patient walks through the door at your clinic or your site.
Next, we'd like to highlight the importance of MI, which is also known as motivational interviewing, as an invaluable patient-centered tool. You know, we've discussed that this approach meets clients where they are, rather than where we think they want to be, or they should be. And it helps us build trust by supporting behavior change as a way of respecting the patient's own goals, values, and readiness to engage in care.
And then thirdly, we want to consider the role that stigma plays in the lives of our patients, both externally and internally. You know, stigma continues to affect people living with HIV, and it influences how they view themselves and interact with the healthcare system, regardless of how long they've been living with their diagnosis.
Lauren, could you talk a little bit about how we might approach someone who's experiencing some complex challenges in engaging in their healthcare?
Lauren Jackson: Yes, of course. So oftentimes, especially in street medicine, you're going to come across patients who have a long list of barriers that they're currently trying to work through. And sometimes they can be seen as competing priorities, right?
And so the way to kind of get started and grounded with a patient that has a complex case would be to start by addressing the highest priority from the patient's perspective. We're highlighting the idea that we want to embrace where the patient is at and where they want to be versus where we think they should be. And so we have to assess what their priority is, right? So, applying patient-centered care principles for prioritizing intervention. So for some folks that are experiencing homelessness, that could be their main priority is figuring out what they're eating for that day, right? Or getting a bus ride somewhere. And so we have to just meet them where they're at and discuss their goals.
When you have a complex case, it's easier to work in smaller batches, things that you can address more individually and based off of their priority, right? So the idea could be, well, where do you see yourself in a week, or where do you want to be in a month, and then how do we get you there, right? So what do you have to do today to reach your goal by the end of the week?
And so this is where we really get into the nitty-gritties of establishing action plans, starting with small goals, taking it one step at a time, and partnering together to see how we can get that task done for the day and then also plan ahead. And it's always important to find ways to educate the patient on their HIV status and its required treatment and finding ways to kind of weave them in together so that the patient can develop a perspective where, although my priorities may look different from what another patient's would look like or what my navigator's priorities for me are, they all are at an interplay when it comes to keeping me healthy and managing my HIV.
Shellye Jones: Yeah, you know, in our program, we have seven education sessions that we offer all of our patients, from HIV 101 to understanding your mental health, substance use, patient-provider relationships, adherence, stigma and disclosure, and prep, because we feel like the more the patient is aware and educated, they can make those informed and educated decisions about their own treatment, because sometimes we want it more than the patient seems to want it, because they don't really understand, you know, the information that's in front of them.
So by educating and providing a platform for them to learn about their treatment and all that encompasses it, they can then be active participants.
What about resources, Lauren? Maybe we should talk about that. What are some of the resources that can be provided, or maybe even tips you can share to make it easier for a patient to, say, keep their appointments?
Lauren Jackson: Yeah. So a way to kind of keep patients, like, aware and on top of their appointments could be sending, like, gentle, friendly appointment reminders, right? And a part of that personalized care is asking the patient how they would like to receive those reminders.
Some people want a text message. Some people want a phone call, right? And some people can just remember it and jot it down in that current meeting and can remember it for the future.
But the idea is that we want to be flexible with how we offer the services and also be flexible in the scheduling. So if a virtual appointment suits the patient best at a particular time, being open to that so that we can truly meet them where they're at and not impede on their care. And also just utilizing some resources that might be already built into the clinic space or the office space, such as, like, auto-populating certain resources and discharge paperwork due to their needs, right?
So that could be a list of food pantries or shelters or local showers that people can utilize. That way, patients aren't leaving your facility or your meeting with the same resources that they came in with, right? We always want to make sure that we're sending them home or back into the community with resources that can enhance their – their living conditions. And so something that that could look like could be hygiene kits, it can be care bags, it could be gift cards, tap cards for local transportation, things like that.
Shellye Jones: Yeah, I think also meeting patients, if you have the capacity to do that at like the food bank where they pick up their food, if you've lost a patient, you don't know how to find them, you know they're going to be at a place on Thursday picking up food, and meet them there. Show the patients, like I know locally at the library, they can make copies, ten copies a day of any paper that they want to. So most of our patients don't have printers at home or copy machines, so they can go to the library on the corner and make those copies.
So, making sure that they're aware of the resources and they learn how to use the technology that's available to them. Even something like the patient portal, we spend a significant amount of time working with the clients and patients on how to access their portal because through the portal they can refill, put in a medication refill request, they can check to see when their next appointment with their provider is, they can message their providers. So once they become proficient at using the technology that's available to them, they can become more engaged in their care as well.
I think another thing too that's helpful is mentoring calls. So rather than making calls for patients, something maybe like transportation is doing a three-way call where I might make the call to the transportation company the first time and the patient can listen, and then when they ask specific patient-related questions, like what's patient's address or date of birth or phone number, then I turn the call over to the patient and let them answer that, and then they can see how the call goes so that the next time they're able to do it themselves. So when we do that three-way call, I get on the call to support them, but I let them do the call themselves so that by the next time they're able to do it on their own.
Lauren Jackson: Right, right. And it seems like what you're describing, Shellye, really is like the idea around wraparound services, right? Which can look different for everybody, right? And it's patient-specific. And so some of the things that you mentioned were like transportation and connecting folks to their resources, their doctors, empowering them, teaching them how to gain access for themselves so that they don't have to depend on others such as a navigator, right? The idea too in terms of providing this type of care is to empower the patient to be able to feel they have the autonomy to advocate for themselves and to navigate through these systems for themselves, right?
And so I think it's really important that you're highlighting that. And so I think the importance of, like, the wraparound services is really, it's a tool that could be used to address a variety of social determinants of health, right? So as we were talking about before with complex cases, right? And so the way to kind of implement these wraparound services is by utilizing the amazing work that patient navigators do, right, or case managers do. Patient navigation or case management is a very critical tool for supporting care engagement. And so like we said before, it comes in many models, right? It can be text or calls. It can be three-way calls. It could even include, like, in-person tracking, depending on if this person is connected to a street medicine team with certain resources.
And so I think we just really want to highlight and amplify the work that patient navigators do. And so Shellye, what are some of those other resources that like patient navigators use to kind of assess how severe someone's case is and really kind of like navigate that case with the patient?
Shellye Jones: One of the ways we do this is helping patients set SMART goals, which is setting specific, measurable, attainable, relevant, and time-bound goals that are short and sweet at first so that they can have many successes. And so, you know, the first goal that we might even use with the patient is they're going to attend their next visit. They're going to go to the lab when they leave meeting with their provider and get their blood drawn.
We also help patients by using something called an action plan and/or some people might call it a care plan. And this is where we put those goals into action. So what's one goal that you want to work on with your provider or health goal? What's one personal goal you want to work on? What's one fun goal you want to work on? Because we want to make sure that patients don't think that the only thing we care about is their health because we care about them as a whole being, their mind, body, and their spirit. And patients need to find their strength, their resilience, and hope in their situations, especially if they're newly diagnosed, because it can be quite overwhelming for them. So this is a time when you can help build strength in your clients and help to build this rapport that, like I said, taps into their resilience by helping them find hope.
We do this often by using a tool called an acuity scale. And the acuity scale is a structured intervention-based tool that assesses how much care and support a client needs by identifying the barriers. And it is a wonderful tool that the team can use while not knowing exactly what barriers a client is struggling with by just understanding the scoring of the acuity scale.
The whole team knows if you have an acuity score of five, you probably have low or minimal needs. But if you come to the table and we're talking about a patient that has an acuity scale of 21, we know this patient has more complex and immediate needs, and it helps the team prioritize the support that's required to engage that and engage that client.
Shellye Jones: Lauren, let's talk a little bit about how stigma impacts both clients who are newly diagnosed and maybe younger and clients who've been living with HIV for a long time and older and everyone in between.
Lauren Jackson: Right, right. Yeah. Stigma is something that I think applies to people of all demographics and identities.
It could really, you know, play a role in creating fear. It could be a huge barrier to effective care engagement for various reasons, right? It could be, some people are worried that an HIV diagnosis may reflect their sexual behaviors or how they navigate the space, right? Whereas some folks feel like there's a social condition, whether they are unhoused or have other varying identities that can be the reason for or indicate why they got HIV.
So I think that stigma is just something that people battle with.
Shellye Jones: I think also something we've noticed is even social media, people are afraid to be in photographs because they're afraid that if they are photographed with somebody who's out about their HIV status, then other people will think that they have HIV. Or if they go to an event, they're not ready to disclose their status. So they don't want to be associated at all on any level with even saying the words HIV. Sometimes it's familial, family-oriented. Families still want people to eat off of a specific plate or not use a specific bathroom because a lack of education.
So that stigma we talked about at the beginning, whether it's internal or sometimes it's placed upon the people living with HIV from external forces or people, it can be just as painful.
Lauren Jackson: Exactly. Exactly. And we can see how that can create a barrier to care, right? It's like you don't want to be outed for your status, right? Or you don't want to be judged for the life that you're living, essentially with having the diagnoses, which I think really just speaks to the amount of misunderstanding that folks have around HIV. I mean, we can even talk about folks not wanting to talk about HIV tests prior to sexual encounters, right?
You don't even want to ask people their HIV status or ask when their last test was because it would imply certain things, right? And so I think when you actually are living with it, it creates an even harder issue to navigate. And so I think that's where it's really important that we highlight the power of peer support, right? It's a tool that we could use to combat stigma and build community.
It's a critical opportunity to build trust and to empower patients, right? When patients feel as though they have someone in their corner that understands and can advocate and maybe even provide clarifying information, debunk myths around HIV, it can empower them to want to educate others while also creating a safe space for them to feel like they can go into the clinic spaces to receive their care, right? And so I think in having a trauma-informed care approach, understanding the way that stigma shows up and the way that people navigate the health system, it's important to be flexible and discreet in the way in which we deliver care, right?
We have to meet patients where they're at. And so if that means that a patient wants to have a virtual appointment because they don't want to go to the clinic, they don't want to be associated with a clinic that services folks living with HIV, then I think we should respect that, right? And not allow their fears of the judgment of others to impede on their health, right? And so I think it's also important to ask about their safety concerns, right? Is it safe to receive certain medications by mail? Is it safe to receive phone calls and leave voice messages, right?
So I think it's when you really loop in the patient into their care and allow them to kind of personalize it for them, we can really make great strides in ensuring that people are not disengaged in their care and can ultimately impact their health outcomes. And so flexibility and discretion of care delivery can really ensure that services are accessible and engaging for adolescents, for younger people to really support in those care transitions.
Shellye Jones: And making sure that you're aware of your own implicit biases and your own prejudices and that you are not adding to the stigma that a patient might be experiencing, that your team is not injecting stigma into the experience that the patient is having, and that everyone should be aware, especially with newly diagnosed clients who are coming into your clinic for the first time, that whether the relationship is a long-term relationship or a short-term relationship, it's extremely important that the interaction can determine whether a client stays engaged or becomes lost to care. And it really starts with any member of your team, not just the provider.
Lauren Jackson: Yep. You'd be surprised how many patients have stories where they feel like they were discriminated against or mistreated by clinical staff, right? And so I feel like that further plays into the stigma and the – the fear of wanting to get care. Because while we may – folks may not feel like the community at large is safe for them, the clinical space should be safe for them, right? Because that's a very important role in keeping them healthy and keeping them engaged in care.
And so it's just really important, like Shellye said, to just be aware of your own implicit bias and being willing to – to learn, right, and to change and to grow so that we can make sure that we're delivering the best care to our patients.
Shellye Jones: Exactly. Because the provider is still viewed as someone who has the knowledge. And since many times the clients don't feel comfortable in their own skin or they feel like they have so much less knowledge about their diagnosis, they want to feel safe and not judged as they're learning.
And so you don't come off as being Charlie Brown's teacher, womp, womp, womp. It may take several times for the client to feel safe and open to build that rapport and to be honest with you and to know that you are going to be a safe space for them so that they can learn and grow and make educated and informed decisions. We keep saying that, educated and informed decisions, because that's our goal here is to empower the patient, tap into their resilience so that they feel strong, and they can begin to live their authentic lives and feel like their authentic selves.
Lauren Jackson: Yep. Yeah. So, you know, in summary, honestly, I think the biggest things that we should keep in mind when we're trying to engage with clients, whether they're young or old or coming from a different socioeconomic status, right, is to first determine how to engage with the client, right? And so I think the really key piece here is to approach it with a trauma-informed care framework, right?
Utilizing tools that are accessible, such as motivational interviewing techniques, right? Making sure that the care plan, all the goals and conversations are patients-centered, meet them where they're at. And that means that we are going to navigate their care plan based off of what they say is priority for them, right?
And then we use our skills, our navigation skills, our peer support, our teams at large to find ways to embed the importance of their HIV engagement and their treatment into their priorities, right? We want it to feel as though that they are still getting what they want while also understanding that what it is that they want is also important for their health, right? And how it's all connected, right? That's a holistic approach that we really want to take with this.
And so we want to identify their problems, right? Create small goals and action plans that are attainable. Be flexible in the delivery of care that we offer to them, whether that's virtual appointments, whether that is us utilizing or building in efficiencies that can make resource access more attainable. So, like I mentioned earlier, right, that can be care bags, that can be hygiene kits, support with transportation.
And so it's just really important that we approach it with the trauma-informed care perspective, a patient-centered perspective, and a team perspective. And just remembering that we can literally be the piece that changes the game for them, and that they can have a different, more healthy understanding, and holistic understanding of their care and how their care plays into their everyday life. And so our goal is just to make their life easier and also improve their health outcomes while living with HIV.
Shellye Jones: I absolutely agree with you, Lauren. And, you know, I think if this work weren't so important, I wouldn't have been doing it since 1989. Because if you had told me back then in 2025, I'd still be working in HIV, I wouldn't have believed it, because I wouldn't have thought my heart could take it.
But here, with the advancement of the treatments and people living as long as they have, yet people still becoming diagnosed with HIV, it's so important, more than ever, that those of us who've been around for a long time, such as myself, and those who are a little bit more new to the community, such as yourself, work together so we can pass the torch, and we can make sure that the work continues.
So, just really want to say what a pleasure it is to have been working with you. And congratulations for getting into medical school. And I know you're going to be an amazing physician. And any patient that you have, you know, working with you, is going to be lucky.
Lauren Jackson: Thank you so much, Shellye. I've honestly learned so much from you. And it's always a pleasure to engage in this type of dialogue with you. I learn so much every time. And I think that it really just shows, like, where the future of, like, healthcare is going. And so I think it's a bright future. And I look forward to continuing to grow with you and to impact the lives of those around us. So thank you so much.
Shellye Jones: Thanks again.
Thank you, Shellye and Lauren, and many thanks to our listeners for joining us.
To learn more about breaking the barriers to engagement in HIV care, click on the link in the show notes. And to get access to all of our new podcasts, subscribe to the CCO Infectious Disease Podcast on your favorite player. Thank you and see you on the next podcast soon.