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Including transgender and gender non-binary people in online sexual and reproductive health surveys

What was done? Participants in most research studies about contraception, pregnancy, and abortion are cisgender and heterosexual. “Cisgender” means that the participant’s gender is the same as their birth sex. Our colleagues at The PRIDE Study wanted to know more about the reproductive experiences of transgender, non-binary, and gender-expansive people who were assigned female or intersex at birth. What else could be learned about the reproductive experiences of cisgender sexual minority women? Heidi Moseson and her team set out to learn how participant input can be used in different ways to improve research. The team created an online survey to ask about people’s experiences with contraceptive use, pregnancy, and abortion. A range of questions were asked, including gender identity, language used for sexual and reproductive body parts, and medical or surgical steps people have taken to affirm their gender. The team also asked about sexual attraction and sexual activity, contraceptive use and preferences, and pregnancy history and desires. The study shows how questions in the survey were changed with participants’ input to create a more inclusive and positive survey experience.

What was new, innovative, or novel? Heidi and her team measured people’s sexual and reproductive health experiences without assuming their gender identity, sexual orientation, or the gender identity or sexual orientation of their partners. Participants were allowed to choose words in the survey for different sexual and reproductive body parts and experiences. The survey team hoped these steps would help people feel comfortable participating if their gender identity was different from their birth sex.

What was learned? Heidi and her team learned how participant input can be used in different ways to improve research. Specifically, they learned that participant input can make the survey a more positive experience for participants, and potentially improve the quality and accuracy of the data collected. For example, participant input was used in the initial design and in the implementation of the survey. It takes a lot of time to create a survey experience that is truly participant-centered, but the team believes this time is well spent if it results in a more positive research experience for survey participants.

What does this mean for our communities? Creating more inclusive, positive surveys for broader groups of sexual and gender minority people will improve their survey experience. Creating surveys with language that people normally use to describe their bodies and bodily activities helps people feel validated and supported. Researchers can use this survey to understand the sexual and reproductive health experiences of ALL people, regardless of gender identity. Such results can better reflect the gender and sexual diversity that exists in our communities.

What’s next? The hope is future researchers will offer participants the opportunity to substitute words in order to develop surveys that affirm participants’ beliefs. Future research can discover if using language selected by participants in a survey leads to higher response rates compared to surveys using traditional methods. This method may inspire others and will advance the field of survey research for people who have been treated as insignificant in society.

Take Action: Check out The PRIDE Study for more information and to share this study with your friends and family.

Access the published paper entitled Development of an affirming and customizable electronic survey of sexual and reproductive health experiences for transgender and gender nonbinary people on PLoS ONE.

This information was provided by The PRIDE Study. To read more about this and other publications The PRIDE Study has worked on, check out their research page. TransFORWARD: Texas Transgender Health is proud to be a Community Engagement Partner for The PRIDE Study.

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John Oeffinger is Director, eLearning and Training for Texas Health Institute and Co-Director of TransFORWARD: Texas Transgender Health, a collaboration between Texas Health Institute and Equality Texas Foundation. He has 39 years’ experience in project management, distance education and eLearning in for-profit, association, and non-profit organizations. John currently leads or co-directs four eLearning or transgender health projects for THI developing collaborative partnerships with national, state, and community based partners. He has been project lead for thirty-three online courses including twenty-five that are currently online. John earned his Bachelor of Arts in Anthropology from Texas A&M University in 1976 and was named to Marquis Who’s Who in America in 1996. His primary research interests are in culturally competent transgender health, 3D immersive learning, web and mobile applications in health, and developing organizational knowledge.

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