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Persisting in HIV Care

CE / CME

Persisting in Care: Ensuring HIV Services Are Inclusive and Equitable

Nurses: 1.00 Nursing contact hour

Pharmacists: 1.00 contact hour (0.1 CEUs)

Physicians: maximum of 1.00 AMA PRA Category 1 Credit™

Released: September 12, 2024

Expiration: September 11, 2025

Samantha Hill
Samantha Hill, MD, MPH
CME/CE Information

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Overcoming Stigma: A Framework for Sustained Retention in Care

Next, I talk about stigma and retention in care. Roy and colleagues13 proposed a 3-part framework for sustained retention in care, focused on overcoming stigma.

The first component is patient activation, which entails acceptance of their diagnosis and prioritization of their health, as well as gaining health literacy and skills to manage HIV as a chronic disease. For me, this means getting the patient really involved, engaged, and empowered in their care. Let’s give them the skills that they need to manage their HIV in partnership with us.13

The next component is social normalization. That is engaging the patient and their social network to support their treatment. On a practical level, that is helping patients find a peer support network, that may also include us as providers, and local activists in the community who are not related to HIV. To address this part of the framework, we should ask, “What’s their social capital and social network like? How can we leverage that to accomplish all the work we’re supposed to do together?”13

The last component is livelihood routinization. To me, this means examining how we help patients manage their HIV while still allowing them to live their life and have fun. They should be able to manage their HIV, while accomplishing everything they want to in life. They should be able to travel, go to school and work, and have a family without constantly being reminded that they have HIV.13

When we are able to capitalize on these 3 components of patient activation, social normalization, and livelihood routinization, then we get patients who are much more likely to stay engaged in care.

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Strategies to Deconstruct Stigma

I have learned the importance of meeting patients where they are, giving them time to process their new situation. I have had patients who were not ready to start on medicines because they were so fixated on who gave them HIV or how they acquired it. We need to understand that sometimes people need time to process.3

In the same way, patients’ family members might need time. I have had some who are so shocked and distraught by their loved one’s diagnosis that they say hurtful things without realizing it. But instead of dismissing them as a mean person or a bad parent, I try to approach the situation in a trauma informed way, giving them time.

I also want to be able to pause and address the person’s fears. My message to most patients is “You’re going to be able to do all the awesome things you were going to do before you got this diagnosis.” But before I discuss this message, I first ask them, “What have you heard about HIV?” I ask this because, for me, it is important to know what they know and what they have heard so I can try to address any fears or misconceptions.

I have been in some great institutions and organizations that have had great disclosure workshops. This is something I highly recommend, particularly if they are led by someone with HIV and with lived experience.3

Listen to Angelina Namiba, founder member of the 4M Network peer mentoring group, as she explains why giving people time is such an important factor in keeping people in care.

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Meaningful Involvement of People Living With HIV for Health Empowerment

The last point I want to cover is how I believe that people living with HIV should be involved with HIV care in every aspect. Meaningfully involving people living with HIV in HIV care empowers them to actively participate in, and take control of, their care. Everything I do for the people and populations I work with is about empowering them.

There is the phrase “nothing about us without us,” which is used primarily to advocate for inclusion of people of color, but it is also used to refer to inclusion of people living with HIV in HIV care. It also highlights the importance of including people living with HIV of varying backgrounds.17,18  

We often think of involving people living with HIV as social workers and case managers, but having people living with HIV as physicians, nurses, medical assistants, etc—basically having people living with HIV employed throughout the team—is going to make the team that much stronger. We should also create safe spaces for people living with HIV within our research and in our community outreach and education.

In my experience, this helps build community and resilience. It also makes us better HCPs because people living with HIV on the team are better able to call us out when we do something wrong, however unintentional. They are more comfortable telling us, “That wasn’t very trauma informed of you,” or letting us know of things we do that may make patients uncomfortable.

In all, we must ask ourselves, “How do we work with the people we serve, who have HIV? Do our actions reflect their diversity and that they are strong and right? How do we work with them to ensure that they persist in the care so that they can attain their life goals in addition to viral suppression?”

Hopefully, this discussion made you think of some ways to sustain people in care that you can optimize in clinic or new strategies for retention in care that you can integrate into your clinic.

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