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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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Social Support for Older Adults Living With HIV

Barriers to care can be different for people at different stages of their lives. In particular, older adults living with HIV may need social support just as much as younger adults living with HIV, but in different ways.12,13

Individuals who are diagnosed later in life may not have disclosed this to anybody in their social network. If they are also someone who identifies as either a sexual or a gender minority, they may not have disclosed any of those things to their social circle, either. This can be very isolating—now you have someone who is trying not just to navigate the healthcare system and their HIV diagnosis, but their life by themselves. Studies have shown that a lack of social support is associated with poorer HIV outcomes.12,13

In addition, older individuals may be even more distrustful of the healthcare system, so it can take time to gain their trust as their HCP. Conversely, if older people do not have much social support, HCPs can become their chosen family. In this role, it is really important for us to be creative in how we help them experience their community.12,13

Listen to Vincent Crisostomo, Director of Aging Services at the San Francisco AIDS Foundation, provide an advocate’s perspective on what is important in medical visits for patients and older people, in particular.

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Social Support for Young Adults Living With HIV

Social support is also key to persistence in HIV care for younger adults. They may have many of the same issues as older adults, such as concerns about disclosure.14,15

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Youth-Focused Care Strategies

However, I believe that there is much more room for creativity in finding solutions for younger adults than older adults. For younger adults, there are many social support interventions centered on peer navigators and care coordinators, as well as community advisory boards, that can help them persist in care. The community advisory boards not only often inform how clinics run, but also serve as support groups for people living with HIV.14,15

Adherence clubs are another innovative youth-focused strategy for persistence in care. Basically, peers come together outside of the clinic and are able to pick up and take their medicine with each other, as well as discuss other life events.14,15

Finding community among peers at similar life stages is important for youth in particular because some young adults are not emotionally mature enough to navigate HIV care in an adult settings.14,15

The transition to adult care can be especially jarring and disruptive to care. Some clinics are able to keep youth up until age 30, others until age 21 or 24. But regardless of when this transition occurs, I believe this group of patients aged 18-30 years requires more individualized care to figure out how best to transition them to adult care. Ultimately, this age group often falls out of care, unless they have particular programs in place that focus on the fact that they are a vulnerable population. To address this, I think younger adults living with HIV should have the option of receiving care in an intermediate or a transitional setting.14,15

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Supporting Disclosure for Young Adults Living With HIV

To understand why disclosure can be a particularly important barrier for young adults, we have to consider what repercussions disclosure might have for them. I find they are often concerned about the potential to lose family members and peers. I have heard stories about parents saying, “Thank you for telling me, but do not tell the other parent. This will not go well for us.” This shows why it is so important to approach disclosure with sensitivity and discretion.14,15

Even with supportive parents, losing peers after disclosing their status is a major concern for young people living with HIV. For young people who may just be starting to date, the stress of whether or when to disclose their status to potential partners can cause them to miss visits.14,15

I also think it is helpful to think about disclosure from the parents’ standpoint, especially for pregnant people living with HIV or children who perinatally acquired HIV. As the young person approaches the age where they need to be told that they have HIV, clinics should support parents by making sure that the stress of the situation does not cause the parent to become disengaged with care. Then, after disclosure occurs, the young person will need support with persistence in HIV care as they transition through life’s phases.14,15

Sometimes disclosure happens very late or very suddenly, which can also be traumatic. Unfortunately, I have seen young people disengage from care because of that as well.

All it takes for a person living with HIV to disengage from care for a long time is one negative disclosure experience. It is challenging to overcome that trauma and come back from that and further highlights how HCPs need be thoughtful, trauma informed, and attentive while discussing disclosure.14,15

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Gender Inclusive Social Support

To provide gender inclusive social support, we need to understand the concept of gender identity and how crucial that is to making people feel welcome in care. My job is to see the person I have in front of me, ask them their name, their preferred name, their preferred gender, and pronouns and to make sure I have gender-neutral signage and bathrooms if possible.16

I think another simple way to create a gender-inclusive environment is having images of diverse genders on the signage and on resources that are used in the clinic.

However, I think it is even more important to have gender diversity represented among the people working at the clinic. In my practice, we have representation of gender-diverse individuals working at all levels of our clinic settings.16

As with discussing disclosure, discretion is also key. HCPs need to be mindful that, sometimes, the communities we work in are small, even if we are in a large setting. For example, if someone has a unique name, we should be cognizant when calling for them or discussing them to avoid unintentionally alerting others in the community that they have been to an HIV clinic.16

Finally, if you have a clinic that is employs predominantly male people, or provides services to predominantly male patients, regardless of whether they are cisgender or transgender men, you may consider carving out some space for cisgender and transgender women living with HIV. In my experience, this goes a long way to helping patients feel welcome and comfortable.16  

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