By Andrea Kott
In the early 1990s, near the beginning of his career as a clinical psychologist specializing in LGBT health and sexual identity development, Walter Bockting, PhD, spotted a trend that would ignite the research that has made him one of the world’s leading experts on transgender health.
It was ten years into the AIDS epidemic. Although the disease had initially affected men who had sex with men, Bockting was seeing increasing incidences among the transgender people in his clinical practice at the University of Minnesota. What he wasn’t seeing, however, was any recognition of this trend. The Minnesota health department was tracking transgender people with HIV, but the Centers for Disease Control and Prevention (CDC) was not; it was simply lumping them in with men who had sex with men, or with heterosexual women.
And CDC surveillance data were driving prevention efforts. Bockting, who had worked with transgender individuals extensively as coordinator of the university’s transgender health services, sought HIV-prevention protocols tailored to their experiences and needs, but none existed. In fact, there was little public health research about transgender people at all.
Bockting dedicated the next 20 years to conducting such research, which he continues as professor of medical psychology at the Columbia University School of Nursing and the College of Physicians and Surgeons. He is also co-director of the LGBT Health Initiative, a collaboration of the School of Nursing, the Division of Gender, Sexuality and Health at the New York State Psychiatric Institute, and the Columbia University Department of Psychiatry. The initiative focuses on research, clinical care, education, and policy on the health of LGBT people.
“By 1995, it was clear that to understand HIV in the transgender community, we had to look at transgender health more broadly,” Brockting said.
What began as his inquiry into HIV-prevention needs and corresponding interventions for the transgender community has evolved into a vast body of scholarship. Bockting is internationally known for his expertise on the assessment and treatment of gender dysphoria—the incongruence individuals may feel between their sex assigned at birth and their gender identity—and in the general mental health and psychosocial adjustment of transsexual, transgender, and gender-nonconforming individuals and their families.
Brockting received his doctoral degree in psychology from the Vrije Universiteit, Amsterdam, the Netherlands. He was a postdoctoral fellow and eventually a tenured professor at the University of Minnesota Medical School’s Program in Human Sexuality, in the Department of Family Medicine and Community Health. In 2010–11, he served on the Institute of Medicine (IOM) Committee of the National Academies, whose work culminated in the IOM report, “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding.”
In his many scientific articles, textbook chapters, and books, Bockting has identified a constellation of issues—stigmatization, in particular—that once obscured transgender health, as well as the needs of gender-nonconforming women and men. “Stigma is the overriding theme affecting the health of transgender people,” he said. He learned early in his research that HIV was not among transgender people’s main health concerns. Rather, he said, “Transgender persons’ main concerns are affirming their gender identity and attaining the health care necessary to make the changes needed to transition to living comfortably in a gender role that is congruent with their gender identity.”
According to Bockting, transition is first and foremost a psychosocial process. Thus, helping transgender individuals make the physical and social changes needed to affirm their identity is elemental to improving their health and well-being, and ultimately, also to prevent HIV infection and transmission, he said. Achieving these goals requires confronting and dismantling social stigma: the negative feelings in society toward transgender individuals and once internalized, the negative feelings transgender individuals feel toward themselves.
This stigma and its accompanying stress are the main ingredients in vulnerability to illness—mental and physical—including HIV. “The stress associated with stigma, prejudice, and discrimination will increase rates of psychological distress in the transgender population,” Bockting wrote in a study that appeared last year in the American Journal of Public Health.
In that study, an online survey of 1,093 male-to-female and female-to-male transgender people, 44.1 percent ranked high on depression, 33.2 percent on anxiety, and 27.5 percent on somatization (physical symptoms that have a psychological cause). Family support, peer support, and identity pride were identified as protective factors that were “negatively associated with psychological distress.” In particular, support from other transgender people was shown to buffer the negative impact of stigma on mental health.
Of course, stigma is not unique to transgender individuals. All minorities—especially sexual and gender minorities—experience stigma. Indeed, among the LGBT Initiative’s many goals is to eliminate all forms of sexuality- and gender-based stigma and discrimination by conducting research, providing clinical care, and enhancing health care providers’ knowledge of, and sensitivity toward, the diverse needs of sexual and gender minorities, said the director, Anke A. Ehrhardt, PhD. “Progress in knowing about and giving care to these populations has been haphazard over the past 20 to 30 years,” said Ehrhardt, who is vice chair for faculty affairs and a professor of medical psychology in the Department of Psychiatry. “Our focus is not just on HIV but on improving the overall health care for transgender people, which has been largely missing from medical schools.”
Although the transgender community is currently allied with the larger LGBT community in the fight for human rights, historically it has been its most marginalized member, Bockting said. This marginalization explains, in part at least, why transgender people fell through the cracks during the early years of the AIDS epidemic. It also explains why so little is known about transgender health. “Transgender people were late in the game when it came to HIV,” Bockting said. “Moreover, there’s a lot we don’t know about the health and well-being of the LGBT population more generally because so much of the focus has been on HIV for many years.”
The diversity of the transgender population makes the field of transgender health especially rich and complex, Bockting said. Transgender people experience a gender identity that differs from the one assigned at birth. How they express their identity physically in terms of medical or surgical adjustments, or socially in terms of appearance, personality, behaviors, or relationships, varies widely. “There is a broad spectrum of gender and sexual diversity,” he said.
For example, some people may be assigned male at birth, discover their identity is more female, and begin to live as women. They may take hormones, with or without undergoing surgery. Others may be assigned female at birth, discover a male gender identity, and live as men. Transgender individuals may be attracted to men, women, or both; they may be attracted to other transgender people. Many identify as straight. “Gender identity goes deeper than being a boy or a girl, a man or a woman,” Bockting said. “Some transgender people can’t be described as being male or female. They would describe themselves as being a little bit of both or belonging to a third gender altogether.”
What is known about the health of transgender individuals is its association with pervasive social stigma, which commonly traps transgender people in what Bockting calls a “cycle of marginalization.” This cycle may begin with social or professional discrimination and spark an accumulation of unemployment, poverty, homelessness, violence, and depression or substance abuse, which undermine health.
“Think of a young transgender man who has just come out to his family,” Bockting said. “His family is struggling to accept his being transgender. At the same time, he’s being bullied in school. All of this makes him vulnerable to dropping out of school, leaving home, and being at risk for homelessness.” The young man may turn to alcohol or drugs. To affirm his identity as a gay trans man, he may have unprotected sex with multiple partners or engage in other high-risk behaviors. “When you have a difficult relationship with your family, or you don’t know how to address your identity on a job application or during a job interview, you can find yourself without much support,” Bockting said. “And if you are homeless, you may have to do things you ordinarily wouldn’t, to afford a place to stay.”
Compared with lesbians, gay men, and bisexual and heterosexual men and women, transgender people have higher rates of depression, anxiety, and suicidal ideation, Bockting has found. Among the transgender women and men he surveyed, 71 percent had experienced verbal harassment, 38 percent had had difficulty finding a job, 23 percent had lost a job, 25 percent had problems obtaining health services, 24 percent had experienced physical abuse, and 12 percent had been denied housing. “It is the social determinants of health that make them most vulnerable,” he said.
Across 29 studies focusing on transgender people’s vulnerability to HIV, risk behaviors included unprotected receptive anal sex (44 percent), sex while drunk or high (39 percent), and needle sharing during hormone or silicone use (6 percent). Mental health issues (54 percent suicidal ideation, 31 percent suicide attempts), illicit hormone use (34 percent), and homelessness (13 percent) increased their vulnerability to HIV. Other studies have found that transgender women of color who had dropped out of school, were unemployed, or had been sexually assaulted were also more likely to be HIV positive. In additional but unrelated research, HIV-positive transgender women were found to be less likely than other groups to be engaged in HIV care.
According to Bockting, transgender women experience more job discrimination than non-transgender women and are therefore more likely to turn to prostitution. As a result, they may engage in substance use, impairing their ability to make sound judgments, let alone negotiate condom use. In addition, feminizing hormones can cause mood swings or sexual functioning difficulties when improperly used, impeding judgment. “Mood swings can make you more vulnerable to high-risk behaviors,” Bockting said.
As pernicious as external stigma is the internal stigma that plagues many transgender people. Bockting describes this as felt stigma, the perception or anticipation of rejection and the fear of not “passing” as a member of the other sex. Coping with this fear causes some individuals to conceal their gender identity, which actually reinforces felt stigma and stress, he said. “Concealment is an attempt to avoid the negative consequences of stigma, but it can result in a preoccupation with hiding, which itself can become a significant source of stress,” he wrote in the American Journal of Public Health.
Felt stigma also may prevent transgender people from seeking health care, Bockting said. The fear of being identified—or simply regarded—as HIV positive may prevent some from visiting a clinic for testing or treatment, he said. The fear of losing a potential romantic partner may discourage some from disclosing their positive HIV status. “Many transgender people are looking for love, to be accepted and valued for who they are,” Bockting said. “Sometimes people are not willing to risk potential rejection after they’ve found someone who can deal with their being transgender.”
The anticipation of rejection, discrimination, or harassment extends to health care settings, as well. More than a quarter of transgender adults have experienced discrimination by a physician or been denied health insurance because of their gender identity. In one study, 40 percent of older transgender adults feared accessing health services outside the LGBT community.
Reducing stigma, therefore, especially in health care settings, is paramount to improving transgender health and is an important focus of the LGBT Health Initiative. This requires clinical as well as cultural competence. Clinical competence includes helping people work through feelings of gender dysphoria (discomfort with sex characteristics and/or gender role), supporting them as they make a social and/or medical transition, and helping them to access hormone therapy or surgery and adjust to living life as a transgender person. It also entails recognizing, Bockting said, that “hormone therapy and surgery are just two interventions within a much broader process of coming out,” underscoring the importance of facilitating family and peer support.
Cultural competence, he said, “is about how we interact with patients. Affirming transgender people’s gender identity and validating and supporting their social transitions are essential. Providers should call transgender patients by their preferred name or the appropriate corresponding pronoun, rather than by the name given to them at birth, Bockting said. “People’s identities must be accommodated in their electronic health record.” When providers ask about gender, they should pose two questions: What is your current gender identity? (male female, transman, transwoman, genderqueer, other), and what sex were you assigned at birth (male or female)? “Both questions are important,” Bockting said. Asking transgender patients who they are attracted to should also be included in a regular assessment, he added. Moreover, providers should be fully informed of a patient’s history of hormone therapy and its health implications. These are among the key lessons in the course materials that Bockting has developed as part of his work with the LGBT Health Initiative.
While asking patients about their gender identity or sexuality, providers need to keep in mind that this information will help them improve the care they give, said Ragnhildur Ingibjargardottir Bjarnadottir, BSN, MPH, a PhD student at Columbia Nursing who is working with Bockting on a study about the barriers and opportunities nurses with the Visiting Nurse Service of New York encounter in assessing LGBT and transgender patients. “In the context of a home health assessment, we may not be able to get the whole picture of what this population looks like, but we can try to identify the challenges that many share, so we can improve our services,” Bjarnadottir said.
Said Bockting, “When people have better access to health care and are better accommodated in terms of their gender and sexual orientation, when their identity is affirmed, they’re going to have better self-esteem and take better care of themselves.” And when people take better care of themselves, they are in a better position to benefit from early interventions to prevent a cycle of cumulative disadvantage and marginalization.
At the same time, providers must be aware of the sex assigned to a person at birth. First, Bockting said, “transgender women keep their prostate even after genital surgery, so if it’s a primary care clinic, providers must not forget to do a prostate exam.” Second, “most transgender men still have a uterus and ovaries and may need gynecologic care.” Third, people’s genetic blueprint informs the trajectory of their health. Even though a transgender woman may identify as female, her body and brain are still chromosomally male. “She is not like most other women; she is a transgender woman. A transgender woman has a history of being male,” Bockting said. “She has a unique experience that differs from the experience of non-transgender women and men. It’s about improving our understanding of transgender people’s unique experience and integrating the idea that there are more than two genders into practice.”
Of course, there is a conundrum: How do providers assess the health status and make prognoses without knowing what is typical for a transgender person? Do they compare transgender patients with male or female norms? “We need to advance our knowledge in this area,” Bockting said. “We may need to compare transgender women with other transgender women and transgender men with other transgender men. “We need to learn more about what is normative for them and take this into account so we can serve them better.”
Likewise, the creation of public policy on this and many other issues needs to be addressed by expanding the evidence base, a significant goal of the LGBT Health Initiative.
Bockting said more research is needed on the health of transgender people and on the psychosocial factors that make them vulnerable to certain risk behaviors, health behaviors, and health concerns, including but not limited to HIV.
The LGBT Health Initiative is about to launch such research: a longitudinal study of transgender women and men age 16 and older who are at various stages of coming out and transitioning and who are at risk for HIV and other health concerns. The study will aim to provide a better understanding of identity development among transgender people, while examining their vulnerability and resilience across their lifespan. Bockting said, “When you look at vulnerability in a developmental context, you can actually understand how the health inequities and challenges people face come about. They don’t just all happen at the same time. They are related to what people are going through as they seek to affirm their gender identity and live their lives as women, men, and persons of transgender experience.”
Ultimately, Bockting and his co-investigators hope to determine what resources and policies are associated with transgender people’s resilience, so as to develop interventions to help them overcome the challenges they face during coming out and throughout their lives. “The goal is to place these challenges on a developmental timeline and identify where we can intervene early and what kind of strengths help people make it through challenging times,” he said.
The study will provide important insights into transgender people’s experiences and needs, their ability to cope with stigma, and ways that providers can serve them better. “To make progress with HIV in the transgender population, we need to understand other health issues that often are of higher priority for transgender people themselves,” Bockting said. “It will not only be another step toward ending the AIDS epidemic; it will be good for promoting transgender people’s overall health.”
This story originally appeared in The Academic Nurse: Spring 2014.