Rewriting the Narrative for Youth with HIV

Aima Ahonkhai has heard the story many times: young people with HIV, feeling at a dead end.

As an infectious disease clinician who works with many young people living with HIV in both the US and Nigeria, Ahonkhai, MD, MPH, has seen the toll the disease takes on young people’s mental health—often to the detriment of their HIV management. Poor adherence to antiretroviral therapy and disease management make HIV a leading cause of death for African adolescents.

That’s why Ahonkai wants to empower them to reimagine their stories. Last year, Ahonkhai, who also teaches at the Vanderbilt Institute for Global Health, won an NIH grant to develop a virtual game called “Change My Story,” using interactive, “choose your own adventure” narrative-based gameplay to reinforce problem-solving therapy techniques.

The game, still in the early stages of development, will eventually be used in clinical trials in Nigeria. Partnering with the University of Ibadan, Ahonkhai and her team will study the game’s effects on participants’ mental health outcomes. She spoke with GHN about how this intervention might help bridge a gap in care for this underserved population.

What obstacles—mental and otherwise—tend to keep young people with HIV from getting the care they need? 
We often view adolescents and young adults as just slightly younger adults. But the brain’s executive function is not yet fully developed at this age. So managing a chronic disease during a vulnerable developmental stage can be challenging. People living with HIV have disproportionate rates of depression and anxiety.

Then we add a number of other challenges: Perinatally-infected youth have even more cognitive delays and behavioral challenges that result from the infection itself. They may be orphaned from one or more parents, and living in really difficult circumstances as a result. And then of course there are the crippling levels of stigma. It’s like a perfect storm. With the pandemic, you have even more difficulties with access to vital care and social support.

How does problem-solving therapy work, and what are its strengths for this group?
Problem-solving therapy is a type of cognitive behavioral therapy which sounds pretty intuitive: You’re identifying problems causing you significant psychological distress; working through potential solutions and coming up with an action plan; then seeing that plan through and reflecting on how it has impacted your psychological state.

The really nice thing about PST is that it has been studied in a number of environments where there is limited infrastructure for psychiatric services. There’s one study out of Zimbabwe where grandmothers in the community were able to deliver PST. In Nigeria, it’s estimated less than 10% of people who need mental health services have access to care. So we need to think about innovative ways to get care to people in need.

On that note—what are the origins of your game, “Change My Story,” and how might it augment PST?
I have been really interested in the opportunities of gaming, because I’m thinking about interventions that are appealing to young people. I was participating in a workshop sponsored by the HIV Intervention Science Training Program at Columbia, focused on integrating gaming techniques into our research. We had a competition where we developed an intervention, and were paired with a game designer to sketch out an early prototype.

One refrain I have heard many times over is about the struggle of HIV disclosure. There’s a young patient I’d seen who was perinatally infected, and as a young adult in his early 20s had a longstanding girlfriend to whom he had never disclosed his HIV status. He had paralyzing anxiety even thinking about it.

So I asked: What if he could see how this circumstance played out in different ways, through this game?

What were some of the pathways?
In one circumstance, the girl ended up finding his antiretroviral pills at home—so he landed in this worst-case scenario of unintended exposure as the result of inaction.

Another pathway was that he actually brought her into the clinic with him to disclose; it was difficult for her, but she accepted it.

This type of narrative structure is very similar to the approach within problem-solving therapy. (Ed. note: she won the competition)

How could the game come into play in a therapy session?
So many young people feel like their story is entirely singular, that no one else is going to understand it. But they may have difficulty seeing different paths. The goal is to introduce them to outcomes they may not have thought about themselves.

The game provides a nice entrée into what could be a challenging discussion with a counselor, who can use the game to talk about the different stories and scenarios. It’s easier to talk about someone else than yourself.

Whether or not a specific scenario is relevant to their life, each story reinforces the steps of PST. So the combination of doing the therapy and illustrating it with the game makes it something that may be more motivating.

What are your priorities in the development process?
Researchers are talking more about the importance of amplifying the voice of the community we are hoping to help improve health outcomes for—but that’s not happening as much with young people. That’s why it’s important to involve them in a really substantive way: developing the storylines and the environment so that the game really engages the person in the treatment process.

What are some other benefits you hope this game can provide?
I’ve thought a lot about the idea of a stigma-reduction tool. Even for me, writing out scenarios and thinking through what a young person living with HIV is experiencing day-to-day is pretty powerful. In some of my initial discussions with young patients in Nigeria, they were saying that this could give other people an idea of what their lives are like.

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