What Do Transgender Women Want? Lessons Learned by Listening

Joseph De Santis, Ph.D., M.S.N., FAAN
Joseph De Santis, Ph.D., M.S.N., FAAN
Sony Salzman

Nearly a quarter of transgender women in the U.S. are living with HIV, according to an estimate by the Centers for Disease Control and Prevention (CDC). Because of their high transmission risk, transgender women are considered good candidates for pre-exposure prophylaxis, or PrEP, the once-daily pill that can protect against HIV.

However, while nurses and other care providers might see HIV prevention as a high-priority issue when talking with their female transgender patients, they should be aware that these patients are likely to have different priorities when seeking health services, said Joseph De Santis, Ph.D., M.S.N., FAAN, associate professor at the University of Miami School of Nursing and Health Studies.

"Even though HIV is a huge problem in the trans community, it's not the only problem they have," said De Santis. To find out what really matters to transgender women, De Santis interviewed 25 women in Florida on a wide range of topics. He presented a synthesis of his findings at the 2017 Association of Nurses in AIDS Care (ANAC) conference in Dallas.

The main takeaway? HIV-related care is not a top priority for transgender women. Rather, they care deeply about gender affirmation, safety, employment, and empowerment.

For HIV nurses and other care providers, said De Santis, it's important to remember that "our priorities are not always our patients' priorities." That doesn't mean that transgender women shouldn't be offered PrEP or other HIV prevention services, but nurses should realize that other high-priority areas might need to be addressed first.

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"Let me give you an example," said De Santis. "According to the CDC, 22% of trans [women] in the U.S. are HIV infected, but 40% of trans women are at risk for suicide. Forty percent is a lot higher than 22%, so if you had to put a priority on something, using that data, wouldn't you say mental health is a little more important than HIV prevention?"

While uptake of PrEP has risen sharply among some high-risk groups, such as white men who have sex with men, uptake among other groups has been spotty, according to recent research out of New York.

When taken correctly, PrEP nearly eliminates the risk of HIV. Yet, for transgender women, seeking protection against HIV may come second to safety, mental health, and employment opportunities.

While talking with transgender women throughout this survey, De Santis realized that there may be other ways for care providers to help their transgender patients minimize HIV risk if taking a once-daily pill isn't yet feasible.

"A lot of these women are disempowered," he said, so any way to help them feel empowered will minimize risk. For example, people suffering from depression and feeling trapped might engage in riskier behavior, and people who can't find work might resort to sex work to support themselves.

Linking transgender women to mental health services and employment opportunities should be key to HIV prevention efforts, in addition to offering PrEP to transgender women who are ready and willing to start taking it, according to De Santis.

According to his survey, transgender women, "might be interested [in HIV prevention], but it's not a priority in their life," said De Santis, speaking to the ANAC audience.

Broadly speaking, the transgender women De Santis interviewed "were conflicted about this paradox of how to stand out, but blend in at the same time[;] ... [a] lot of them are not interested in being continually labeled as 'trans women,'" but at the same time express a desire to be visible in the community and advocate on behalf of other trans women.

This preference for blending in has implications for how HIV nurses should approach conversations around HIV prevention and care, as transgender women might be offended if they are immediately offered PrEP because of the CDC guidelines. In short, transgender women want health providers to really listen to their concerns and not treat them like a statistic.

De Santis noted that a limitation of his research is that he only interviewed transgender women living in the Miami area, and that responses might have been influenced by the fact that he is a cisgender man. De Santis published some of his findings in Public Health Nursing and has plans to publish additional results.

"Researchers developing interventions need to understand the complexity [of transgender care]. If you're going to address risk in this community, you're going to need to address all the intersecting factors that come into play," said De Santis. And, when it comes to the medical establishment's understand of best practices in transgender care, surveys like De Santis' only scratch the surface.