Nursing professor Dr. Tonda Hughes has devoted much of her professional life to researching health issues that affect women; alcohol consumption among sexual minority women, for example, has been among her interests.
"It was like starting with a blank slate, because almost no research had been done with lesbian women, and bisexual women were almost completely invisible," said Hughes
She is the principal investigator for the Chicago Health and Life Experiences of Women ( CHLEW ) study, which launched in 1999 and was the first federally-funded study of its kind. Over the past 20 years, the project has grown into the longest running study of sexual minority women's health worldwide.
Hughes applied for the original grant when she was a relatively new assistant professor at University of Illinois at Chicago ( UIC ), and the CHLEW study has been housed at the university ever since.
According to CHLEW Project Manager Kelly Martin, the project is unique in that it includes a much more diverse group of participants than many studies of its kind. Researchers made concerted efforts to include women of color, older women and women with lower levels of education, all groups that have been underrepresented in studies of sexual minority women's health. In the 2010-2012 phase of the study, 373 women were added to the original 447 women who participated in the 2000-2001 and the 2003-2005 phases of the study.
Currently, the CHLEW study is conducting a fourth round of interviews. The team wants to expand the study to eventually focus more on issues such as parenting, aging and care-giving.
Due to the longitudinal nature of the study, Hughes and her team will be able to evaluate the impact of the 2015 landmark decision to legalize same-sex marriage in the U.S.
"I want participants to understand what an historic and important study this is, and how their participation is vital for understanding more about sexual minority women's health," said Martin. "Dr. Hughes was quite brave to begin this study 20 years ago and I am proud to have contributed to its success."
Another historic event that may influence CHLEW findings is the 2016 presidential election. To prepare for the current phase of the study, collaborator and postdoctoral fellow Dr. Cindy Veldhuis helped develop an online study of sexual minority women and trans people.
The survey was launched in December 2016 and over 1000 people responded. The respondents reported high levels of depression, anxiety and concerns as a result of the election. Not only were they worried about the possibility that LGBTQ rights would be rescinded, they were also deeply concerned about the rights of other marginalized groups, the ACA and losing healthcare.
Veldhuis said, "We need more research, particularly longitudinal research such as the CHLEW study, to better understand whether the negative effects of the 2016 election grow larger over time, and how the more positive effects of marriage equality might buffer fears and concerns arising about the current administration."
Currently, Hughes is a UIC professor emerita and a senior scholar in lesbian and bisexual women's health at Columbia University's School of Nursing where she also serves as director of Global Health Research. She hopes to use these two roles to increase visibility of LGBTQ people and their health across the globe. She is currently working with researchers in Africa, Asia, Australia, Latin America and the Middle East on sexual and gender minority-related health projects.
When asked if she had encountered any obstacles or pushback on the CHLEW study, Hughes said, "In the beginning some of my well-meaning senior colleagues advised me not to focus on sexual minority women's healthat least until I received tenure."
She ignored that advice.
Another hurdle that Hughes overcame occurred in 2003, when her study was one of a number of other LGBTQ studies funded by the National Institutes of Health ( NIH ) that was included on a conservative religious coalition's "hit list." The coalition demanded that NIH offer proof that studies on the list had the potential to improve the public's health.
"Although I was in good company with other researchers from major universities in the U.S., the effects were chilling, because at one point it seemed that the NIH might be forced to withdraw funding from some of the studies," said Hughes. "Over the years, I have received a great deal of positive press, especially from your publication. I have also received negative press from conservative newspapers and blogs about my research. Despite these 'bumps' along the way, I feel extremely fortunate to be living in these historic times and to have the opportunity to contribute to the improvement of sexual minority women's health."
Hughes expressed gratitude for the continuing success of the CHLEW studyincluding recent promising news of new funding that will allow inclusion of the partners of CHLEW participants.
When asked if she thought she would ever reach this 20-year milestone, Hughes said, "Not at first, but because I was mentored by an incredible woman, Dr. Sharon Wilsnack, who was conducting a 20-year-long study of drinking among women in the general U.S. population, we had the foresight to ask women who participated in the first phase of the CHLEW study if they would be willing to be re-contacted in the future should we be able to obtain funding for follow-up studies. And, as they say, the rest is history."
Hughes said the success of the study has everything to do with those participants' willingness to be interviewed over the years. She is proud of the CHLEW study and what has been accomplished and hopes that participants share in that pride.
Both Hughes and Martin told Windy City Times that they have lost touch with some of the participants over the years and are asking them to call 312-355-3657 or send an email to firstname.lastname@example.org so they can be added back into the study. This request only applies to the people who were already recruited for the study, not new participants.