Bridging a Gap in Knowledge

Over the past decade, a great deal has changed for sexual and gender minority (SGM) individuals in the United States, from the legalization of same-sex marriage to the unprecedented visibility of transgender TV stars, pro athletes, fashion models, and government officials. Mainstream support for the rights of lesbian, gay, bisexual, trans, nonbinary, queer, and other nonheterosexual or gender-diverse people to live as they choose has grown exponentially.

Some things, however, have remained stubbornly constant. SGM individuals (also known as LGBTQ) continue to face widespread bias—evident, for example, in the surge of proposed state laws aimed at curtailing gender-affirming care for transgender youth. In addition, they still experience worse physical and mental health outcomes than heterosexual, cisgender people, including an increased risk of cardiovascular disease, certain cancers, substance use disorders, depression, self-harm, and suicidal thoughts and behaviors. Many still lack access to respectful, affirmative health care. And research into the connections among all these factors is still scarce.

“While recognition of SGM people’s unique needs is growing, we lack solid evidence for how marginalization, stigma, and discrimination affect health,” says Tonda Hughes, PhD, the executive director of Columbia University School of Nursing’s new Center for Sexual and Gender Minority Health Research (CSGMHR). “To reduce disparities, we’ve got to understand the dynamics behind them,” adds Hughes, who is also the Henrik H. Bendixen Professor of International Nursing and associate dean of global health.

Launched in June, the CSGMHR is the first research center at any nursing school, anywhere in the world, that is devoted exclusively to this area of investigation. (It is also one of three centers of excellence established this year at Columbia Nursing, along with the Center for Research on People of Color and the Center for Healthcare Delivery Research and Innovations.) The initiative, Hughes explains, will support “rigorous interdisciplinary research on the social, political, and economic determinants of health for SGM populations, which will ultimately inform nursing practice and public policy.” 

“Dr. Hughes and her colleagues are conducting groundbreaking research that embodies our school’s commitment to health equity and social justice,” says Lorraine Frazier, PhD, the dean of Columbia Nursing and a senior vice president of Columbia University Irving Medical Center. “Under her leadership, the center will transform our knowledge in this vital field, while training both new and experienced investigators to contribute to that mission.”

To understand where this bold enterprise is heading, it helps to know what led to its creation—and what some of its founding researchers bring to the table. 

An Urgent Need for Knowledge

The CSGMHR builds on Columbia Nursing’s longtime leadership in SGM-related research, exemplified by the school’s Program for the Study of LGBT Health. Founded in 2012—in partnership with the Columbia University Department of Psychiatry and the Division of Gender, Sexuality, and Health at the New York State Psychiatric Institute—that program embraces research but also clinical practice and curriculum development. Over the years, the need for a center focused solely on research has grown increasingly apparent.

“Nursing lags behind medicine, psychology, and even social work in terms of incorporating research on SGM health into guidelines for care,” Hughes says. “The problem is that very few nurses are doing this kind of research.” To illustrate her point, she cites a study she led with Kasey Jackman, PhD ’17, then a postdoctoral fellow and now an assistant professor of nursing, which was published in Nursing Outlook in 2018. Reviewing articles in the top 20 nursing journals between 2009 and 2017, the team found that only 0.19 percent directly addressed issues related to SGM health. That proportion was barely higher than the 0.16 percent reported in a similar study published in 2010.

Hughes herself has specialized in such research for nearly three decades. The daughter of a coal-miner father and a “Jill-of-all-trades” mother, neither of whom attended college, she earned a BSN in mental health nursing at the University of Eastern Kentucky and an MSN in community mental health at the University of Kentucky. While completing her master’s degree, she participated in a program to help nurses who had problems related to alcohol or drug use. That experience inspired Hughes to study substance abuse in women when she began her PhD studies at the University of Illinois at Chicago (UIC) and then to do a postdoctoral fellowship funded by the National Institute on Drug Abuse. Along the way, she discovered that almost nothing was known about substance use among lesbian women.

As a member of that community, Hughes felt driven to fill the gap. “Some of my advisers worried that focusing on this topic could ruin my career,” she recalls with a laugh. Undaunted, she embraced her role as a pioneer. In one of her early studies, she found that a widely cited statistic—that one-third of lesbians were alcoholic—was wildly exaggerated; the original research, it turned out, had relied on participants recruited at gay bars, but their behaviors did not match those of the broader lesbian population.

In 1999, as a faculty member at UIC, Hughes launched the Chicago Health and Life Experiences of Women (CHLEW) study—now the longest-running study of SGM women’s health in existence, with ongoing support from the National Institute on Alcohol Abuse and Alcoholism. Later, she began probing the health of SGM women in other countries, from Australia to Rwanda. And after joining Columbia Nursing in 2017 as the director of global health research, she started pondering ways to help the profession learn more about SGM people of all genders.

One result was the first National Nursing LGBTQ Health Summit, held at Columbia Nursing in November 2019—an event that Hughes conceived and led. The two-day conference drew leaders from nursing schools all across the country, as well as representatives from organizations such as the American Academy of Nursing, the American Association of Colleges of Nursing, and the National Institutes of Health. Participants discussed strategies for advancing the field’s awareness of SGM health, with the eventual aim of developing a national action plan to address those issues through nursing research, education, and practice. 

The summit helped solidify Hughes’s vision of a center devoted to SGM health research and situated entirely within the School of Nursing. With the support of Dean Frazier, she and her faculty team designed the CSGMHR to pursue three main goals: to promote research aimed at reducing SGM-related health disparities and at improving the health of SGM individuals across their lifespan; to train the next generation of SGM health researchers and to increase the number drawn from underrepresented groups; and to educate established researchers about the health impacts of SGM status and how to incorporate relevant measures into their studies.

The center will pursue those objectives by a variety of means. Plans include providing pilot funds for early-stage studies; offering statistical and methodological support for faculty and trainees conducting SGM health research; and producing seminars and speaker series. Hughes envisions a week-long “boot camp” for pre-and postdoctoral fellows, as well as an annual SGM Health Research Day for the larger nursing community. She also hopes to launch a visiting professorship, a visiting scholar program, and strategic partnerships with faculty from other parts of the CUIMC campus.

Informing these efforts is a philosophy that has long guided Hughes’s work. “SGM health research has traditionally emphasized health risks and deficits and the individual determinants of those vulnerabilities—factors like substance use and sexual behavior,” she explains. “Our approach includes the conditions in which people are born, grow, work, and age. We try to follow participants over time, rather than draw conclusions based on a single snapshot. And we look for factors that increase resilience, not just risk. By developing a holistic view of the populations we study, we can be more effective at enhancing their well-being.” 

Making a Mark on Nursing—and on Patients’ Health

“This initiative creates a dedicated home for sexual and gender minority health research in nursing, both within our school and in the field at large,” says the CSGMHR’s co-director, Walter Bockting, PhD, a professor of medical psychology in psychiatry and nursing and the director of the Program for the Study of LGBT Health. “It will allow us to make a mark on the profession and ultimately on the health of the people we care for.” 

Along with Hughes, Jackman, and Bockting, the CSGMHR’s core faculty members include Billy Caceres, PhD, an assistant professor of nursing, and Cindy Veldhuis, PhD, an associate research scientist and research psychologist. In addition, six pre- and postdoctoral fellows are associated with the center.

The CSGMHR has not yet launched any research projects of its own. But the kinds of studies it will eventually support can be inferred from a sampling of those that its faculty and fellows are currently conducting. Bockting, for example, is an internationally known expert in gender-affirming health care as well as the mental health of trans, nonbinary, and gender-diverse children, adults, and their families. He is the principal investigator of two large NIH-funded studies: Project AFFIRM, a multiyear study of transgender identity development being conducted among close to 400 participants in New York, San Francisco, and Atlanta; and Convoy Q, which examines the role of social support networks in the cognitive aging of New York-area LGBTQ adults and their heterosexual, cisgender counterparts.

Bockting is also leading a study in partnership with the Visiting Nurse Service of New York on transgender patients’ experiences during the first 18 months after they have gender-affirming surgery. “This is the first study that conducts an in-depth investigation of the postsurgical period and how surgery affects people’s well-being and their relationship with the health-care system,” he explains. “One of the issues that contributes to health disparities among transgender people is a lack of trust in care providers. So we’ll be looking at how trust is built in that very important moment after surgery and how to facilitate an improved relationship with the system going forward.”

Caceres’s research focuses on identifying psychosocial risk factors for cardiovascular disease in SGM people and other marginalized populations and then intervening to address them. Since 2019, he has led a study funded by a career development grant from the National Heart, Lung, and Blood Institute, examining the associations among sexual identity, adverse life experiences, and cardiovascular health in lesbian and bisexual women and their sisters who are heterosexual. (Participants in this study were drawn from Hughes’s CHLEW study.) 

Caceres recently launched another study, supported by the Columbia University Data Science Institute, which examines how “minority stressors”—factors such as anticipated or actual incidents of discrimination—affect sleep and blood pressure in SGM individuals who are Black or Latinx. Participants keep electronic diaries of their experiences, wear Fitbit devices to assess their sleep, and complete daily blood pressure tests. “We’re trying to see if there’s a link between stressful episodes, people’s sleep that night, and their blood pressure the following day,” he says. “This is the first study of its kind that’s been done in any population, as far as we can tell.”

Veldhuis, who worked with Hughes while earning her PhD in psychology at UIC and her postdoc at Columbia, is leading an NIH-funded investigation called the Study on Queer Intimate Relationships (SOQIR, pronounced “so queer”), which is examining health behaviors among women in same-sex couples. Through online surveys of over 500 couples, plus interviews with more than 50 of them, she and her team are collecting data on their relationship dynamics, mental health, and health behaviors, such as drinking and marijuana use. The team’s initial paper, recently submitted for publication, focuses on sources of stress among interracial and monoracial couples. 

“Even though there’s a higher proportion of interracial couples in the SGM community, there’s been next to no research on those couples,” Veldhuis observes. Her group found that the greatest differences in stressors were not between monoracial and interracial couples, but between couples in which one or both members were white and interracial couples in which both members were women of color. The latter, she reports, “experienced significantly higher levels of safety concerns than did other couples. They also experienced far higher levels of rejection and were less likely to be integrated with their families.” 

The CSGMHR’s fellows are also doing creative and ambitious research. For example, third-year PhD student April Ancheta, BSN, recently co-authored (with Tonda Hughes and Jean-Marie Bruzzese, PhD, a professor of applied developmental psychology at Columbia Nursing) a systematic review in the Journal of School Nursing on the impact of a positive school climate on suicidality and mental health among LGBTQ adolescents. The study was inspired by an appalling statistic: the fact that lesbian, gay, and bisexual students are 2.92 times more likely to report suicidal ideation, suicide plans, and/or suicide attempts than their heterosexual peers. “I’m interested in the intersection of school health and education policy,” says Ancheta. “I wanted to see whether school climate—the quality of teaching and learning, interpersonal relationships, safety, and physical environment, as reported by students, staff, and administrators—could make a difference for these kids.” 

After sifting through more that 1,000 peer-reviewed articles related to the topic, Ancheta and her colleagues found just six that met their criteria for relevance and risk of bias. Of these, five showed that risk of suicidal thoughts and actions, as well as depressive symptoms, were significantly lower for LGBTQ students in schools with more positive climates. What remains unclear, however, is whether specifically LGBTQ-friendly policies played a protective role. “There’s a dearth of that kind of research in the literature right now,” Ancheta notes. “That’s one of the things I’d like to examine in the future.”

Mentoring the Next Generation

Ancheta also worked with Caceres to create a new mentorship program in LGBTQ health for pre-licensure nursing students—a joint venture between Columbia Nursing and the National Student Nurses’ Association (NSNA). The idea emerged during the 2019 National Nursing LGBTQ Health Summit, whose scholarship and research work group Caceres co-led. “Besides being a wonderful student, April was very active with the NSNA,” he explains, “so I immediately invited her to help develop the project.” 

The program’s goal is to increase knowledge of SGM health among participants through one-on-one mentorship, bimonthly workshops, and completion of a final project on an LGBTQ health topic, which will be submitted as a poster to the NSNA Annual Convention. This past June, the first six students were chosen from over 30 applicants, based on essays articulating their interest in LGBTQ health, their leadership potential, their proposed final project ideas, and a letter of recommendation from a faculty member. Although the program is not geared specifically toward research, it may inspire some participants to explore the field further.

Ancheta herself was drawn to this line of inquiry by her own experiences. Growing up outside of Newark, New Jersey, the daughter of a registered nurse and a factory worker, she came out as lesbian in her early 20s. Her parents were supportive, and she remembers encountering little overt discrimination. While studying for her BSN at Rutgers, she assisted with a study of energy-drink use among adolescents and found she loved doing research. Like most nursing schools, however, hers offered little instruction on SGM-related concerns. It wasn’t until after graduation, when she attended a talk on the subject at an NSNA convention, that she learned about the health disparities associated with being LGBTQ. “I was just blown away,” Ancheta recalls. “I thought of myself as a proud member of the community. But I was shocked at how much I didn’t know.” 

That epiphany led her to the PhD program at Columbia Nursing. “The education I’ve gotten here has been amazing,” Ancheta says, “and I feel like I’ve really lucked out having Dr. Hughes as a mentor. She has always believed in my potential, even when I didn’t think my research ideas made much sense. She’s always there to talk it out with me and try to make things work.” 

Making things work for SGM researchers—and bringing more of them into the field—is what the CSGMHR is all about. “Nurses are the largest health profession by far,” Hughes points out. “We spend more time with patients than physicians do. Yet nursing schools provide, on average, just two and a half hours of training on SGM issues, versus five hours at medical schools. Our profession has an ethical obligation to learn much more about SGM health, so that we can pass on that knowledge to our students and clinicians. My hope is that the center will contribute greatly to that effort, and that we’ll serve as a role model for other schools across the country.”

This article originally appeared in the Fall 2021 issue of Columbia Nursing magazine.