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Space HIV Care
Making Space for HIV Care

Released: August 06, 2024

Expiration: August 05, 2025

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Key Takeaways
  • Giving people space and time to engage in HIV care on their terms is key to overcoming potential shame and stigma.
  • People can be very vulnerable when engaging in HIV care, and trauma-informed care can help to address these vulnerabilities in a safe, respectful way.

I believe giving people space and time to engage in HIV care on their terms is key to overcoming potential barriers to care. Here’s an example from my clinic that illustrates the importance of such care.

I recently saw a woman who received an HIV diagnosis through opt-out testing in the emergency department. She knew she was being tested, but she had no expectation that her test result would be positive.

Beyond processing her own diagnosis, she also needed to think about telling her partner, and we had to think about testing him. How was she going to do that? Did she need our help, or did she want to do that on her own?

Our health advisor went above and beyond in this case, keeping his phone on until 9 o’clock that night in case this patient needed him. In fact, she did call him back needing help to talk to her partner about HIV.

I am not asking people to work out of hours, but I think this example shows that dedication and compassion for patients is so important. It is crucial that we never lose our compassion for the person sitting in front of us. Without compassion, we cannot provide good care and we cannot provide equitable care.

The woman’s husband tested HIV negative, and this raised the question of how and when she could have acquired HIV. After multiple encounters with us, she felt safe in our clinic, and it emerged that she had been sexually assaulted while visiting relatives abroad. She felt such shame that she had not told anybody, not even her husband.

To me, this example has many lessons we can apply in our clinics.

Trauma-Informed Care
I think people are often at their most vulnerable when receiving HIV care. There are many intersecting vulnerabilities that people with HIV, both men and women, can experience, such as mental illness or abuse.

Scenarios like this are why we use a trauma-informed approach to HIV service. Every individual experiences trauma differently, so we must give people the space and time to explore that with us so we can support them through it.

Fortunately, in the United Kingdom, we have health advisors—often trained nurses or psychologists—who work with people to give difficult news and help recruit people back to the clinic so we can engage them in care. All our health advisors are trained in trauma-informed care, and they are the ones who people see first when they receive their diagnoses. They are trained to give a diagnosis as compassionately and supportively as possible.

Overcoming Stigma and Shame
Stigma and shame are also common barriers to receiving HIV care. The woman I described in this example had an HIV center where she lived, but she works in the local healthcare service. Even though the HIV clinic would provide confidentiality, she was worried that she would be seen attending the clinic. So, she chose to drive to our clinic, which is 100 miles away.

This illustrates how the stigma of somebody else finding out about an HIV diagnosis is particularly pronounced in women and even more so in women who come from Africa, often because of poor experiences they may have had with how people with HIV were treated there. Culturally competent care can help us keep from exacerbating this stigma and feelings of shame.

At my clinic, we try to overcome stigma by giving people space and time and by recognizing each individual’s vulnerabilities. People with HIV might want to engage with us less frequently or through virtual appointments. We accommodate their preferences as much as we can. For example, we have virtual follow-ups via email, or with an app, or by phone. We want to make sure that when people come in, they know they are welcome. They do not have to do anything they do not want to do.

Staying in Care
Whenever we provide care, we discuss with the person what we think needs to happen, but we also accept the individual’s decisions. We understand that sometimes people will not make good decisions, but we must accept their decisions if want to keep them in care. They know we will continue to support them regardless of what they choose.

For example, if a person does not want to start treatment, we will try to work out the reasons why. We ask them patient-centered questions, such as, “is there anything you need? Is there anything we can provide to you at the moment? Is there anything that we can do to stay in touch to make sure that you are safe? Would you be open to talking about this again on a different day, once you have had a bit more time?”

To support care, I also think peer mentoring is incredibly important; it can overcome a lot of barriers to treatment that people with HIV face. Peer mentors can show empathy in unique and powerful ways.

For our new patients, we have a peer mentor on site and we also have a weekly support group, called Lunch Positive, where people can get direct support and learn about other places in the community, such as the Sussex Beacon, where they may get HIV support.

Welcoming Care
In this case example, there were potential barriers that could have led to this woman being lost to care: the unexpected diagnosis, the distance to the clinic, the challenge of talking with her partner, the shame and stigma of past assault by a relative. Ultimately, I think providing welcoming, respectful care is about helping people with HIV understand that we are there to talk to them as a person and find out what they want, what they need, and what can we do to help them.

Your Thoughts?
 What methods do you use to provide welcoming, respectful care for your patients with HIV? Leave a comment to join the discussion!