INFORMATION FOR GENDER-AFFIRMING CARE RESEARCH STUDY
STUDY TITLE: Transgender Voices and Faces: Transgender and Gender Non-Binary People’s Perspectives and Needs for Gender-Affirming Care within the Realm of Otolaryngology
University of Southern California IRB Exempt Approval Study ID #: UP-21-00786
PRINCIPAL INVESTIGATOR: Ryan Ziltzer, BS
FACULTY ADVISOR: Roxana Moayer, MD
Summary of Study Information:
- This study aims to learn how transgender and gender non-binary people view gender-affirming care, particularly of the face, neck, and voice
- It involves taking a 20-30 minute online survey, and you have a chance to earn $100
- You may later be invited to a 1-2 hour online focus group, and you will earn $25 for each hour
- Some questions about experiences or gender dysphoria may be personal, we will provide trigger warnings
- Your responses will help doctors better provide gender-affirming care to patients
You are invited to participate in a research study. Your participation is voluntary. This document explains information about this study. You should ask questions about anything that is unclear to you. This study is approved by the USC Institutional Review Board.
PURPOSE
The purpose of this study is to understand the experiences and perspectives of transgender and gender non-binary people on gender-affirming care offered by ENTs (Ears Nose Throat doctors, otolaryngologists) and allied health professionals like speech-language pathologists (SLPs). This includes gender-affirming care of the face, neck, and voice. We hope to learn how the field of otolaryngology can better meet the gender-affirming care needs of transgender and gender non-binary patients. You are invited as a possible participant because you identify as transgender or gender non-binary (eg, gender nonconforming, genderqueer). Note that having previously received gender-affirming care is NOT required to participate.
PARTICIPANT INVOLVEMENT
(TRIGGER WARNING: DYSPHORIA)
If you decide to take part, you will first be asked to answer several screening questions to confirm your eligibility for the study. Then you will be emailed a survey link and asked to complete a survey that should take up to 30 minutes to complete. During the survey, you will be asked about your gender identity, gender-affirming care that you have received or desire, and gender dysphoria. Specifically, you will be asked if you have received a mental health diagnosis of gender dysphoria and asked to rate sources of gender dysphoria (if any) on your body, particularly aspects of the head, neck, and voice. We will provide trigger warnings before questions that ask about gender dysphoria, which will appear as "(TRIGGER WARNING: DYSPHORIA)".
You will also be asked a few demographic questions to help the research team better understand who is included in the study sample (for example: gender identity, age, medical insurance, basic health history). We will ask for your email and/or telephone number strictly for the purposes of arranging focus groups, but this will not be used to identify you in any other context of the study. We will not ask for any other identifying information. For example, we will not ask you your name or address.
After completing the survey, you may later be invited to participate in a virtual focus group with up to 4 other study participants and moderated by a transgender, gender non-binary, or other LGBTQ member of our research team. The focus group may last from 1-2 hours. This focus group will take place via Zoom in a private meeting. We will be audio and video recording and taking notes during the focus groups to be sure your experiences are correctly recorded. While you are encouraged to have your camera on to engage with the group, this is not required if you do not feel comfortable doing so. Participating in the survey part of the study does not require or guarantee participating in the focus groups. See the “CONFIDENTIALITY” section below for more information about audiovisual privacy.
During the focus group, you will be asked to talk about your awareness of gender-affirming care options, barriers to accessing care, and your thoughts on gender identity and the body. Most importantly, you will be asked to share your thoughts and perspectives on gender-affirming care and how doctors of the head and neck can better serve transgender and gender non-binary patients.
POTENTIAL RISKS AND DISCOMFORTS
(TRIGGER WARNING: DYSPHORIA)
It is possible that you may find certain questions that ask about your experiences or gender dysphoria to be upsetting or annoying to answer. You are free to not answer any question you are uncomfortable answering or simply wish not to answer.
PAYMENT/COMPENSATION FOR PARTICIPATION
For completing the survey, you will be entered into a drawing for a $100 visa gift card for your time. The drawing will be held at the end of the study and the winner notified and send the gift card via email.
For those who are invited to participate in a virtual focus group, you will receive $25 for each hour of the focus group. A visa gift card will be sent to you via at the end of the study.
ALTERNATIVES TO PARTICIPATION
Your participation is voluntary. Your refusal to participate will involve no penalty or loss of benefits to which you are otherwise entitled. You may discontinue participation at any time without penalty. You are not waiving any legal claims, rights or remedies because of your participation in this research study. If you do not want to participate in a focus group, you may choose to complete the survey part of the study without participating in a focus group.
CONFIDENTIALITY
The members of the research team and the University of Southern California Institutional Review Board (IRB) may access the data. The IRB reviews and monitors research studies to protect the rights and welfare of research subjects.
When the results of the research are published or discussed in conferences, no identifiable information will be used. Identifiable information will not be disclosed or shared with anyone outside the research team or the USC IRB. This includes research and non-research settings. Select excerpts from focus group audio recordings may be used in research publications, professional conferences and/or academic talks with your permission.
The data will be stored in electronic (computerized) forms. Your contact information, your survey responses, and all data, including audiovisual recordings and transcriptions of the focus group, will be stored in an electronic form on an online HIPAA-compliant cloud drive and protected computers used by the research team. The data files and computers are password-protected so that only authorized personnel can access the data.
Survey data and focus group transcriptions will be kept indefinitely. Focus group audio recordings will be kept indefinitely and can be altered at your request to disguise your voice. Focus group video recordings are only used to help with transcription and will be erased at the end of the study. Any other identifiable information, including contact information, will be erased at the end of the study. In order to maintain the confidentiality of focus groups, you are asked not to discuss the content of the group with anyone not in the group, or to discuss who participated in the focus group.
INVESTIGATOR CONTACT INFORMATION
If you have any questions about this study, please contact the Principal Investigator, Ryan Ziltzer, or his faculty adviser at the USC Caruso Department of Otolaryngology – Head and Neck Surgery. Contact information for the investigators are provided below:
IRB CONTACT INFORMATION
If you have any questions about your rights as a research participant, please contact the University of Southern California Institutional Review Board at (323) 442-0114 or email irb@usc.edu.
