Patients & Providers: Affirming Practices for Gathering Research Data

In part one of Mere Abrams’s contribution to this series, you read how Mere’s education to become a Gender Specialist, Social Worker, and clinical researcher was intertwined with discovering their trans non-binary identity. In the second of three posts from Mere, you’ll learn more about the work they are doing at the UCSF Child and Adolescent Gender Center in the first NIH sponsored research project studying long term medical and mental health outcomes for trans youth.


Affirming Practices for Gathering Research Data

by Mere Abrams

 

As one of the study coordinators for the first NIH-sponsored research exploring the impact of gender-affirming interventions for transgender youth, I find myself in a unique position to inform future research and best practices for this population.

For those who may be unfamiliar with clinical research roles, the study coordinator is the individual who recruits participants, schedules research visits, administers surveys and interviews, collects and records data, and is the primary point of contact for youth and families engaged in the research. I feel a great responsibility to gather informal information about the participant experience in the research and make sure participant voices are heard in conversations amongst the research team.

The gender centers at University of California, San Francisco Hospital, Lurie Children’s Hospital at Northwestern University, Boston Children’s Hospital at Harvard, and Children’s Hospital Los Angeles at University of Southern California are carrying out a NIH sponsored research study to document the medical and mental health outcomes of trans, nonbinary, and agender youth who initiate puberty blockers or cross-sex hormones. Each gender center involved in this study provides clinical care using the gender affirmative model, which is based on the notion that gender variations are not disorders and any pathology that exists often lies in the society, not the young person (Hidalgo, Ehrensaft, Tishelman, Clark, Garofoalo, Rosenthal, Spack & Olson, 2013).

This body of research will allow trans youth, family members, and providers to make more informed decisions about their gender paths, as well as provide the necessary data for providers to learn from the lived experiences of trans, nonbinary, and gender non-conforming young people. This study aims to fill gaps in existing literature and research while exploring the vulnerability trans youth face in the areas of medical and mental health due to minority stress, lack of insurance coverage, victimization from peers, family, colleagues and/or society, discrimination from medical providers (whether passively or actively), and fear or hesitation to seek out medical services.

Research is important in moving any field forward. When there isn’t adequate research to inform our practice, we make an educated guess. Doctors are unsure how to guide patients, patients are unsure about real risks and long-term health outcomes. We talk about the fact that there aren’t any “known” risks or side effects. In the field of transgender health, there is a massive gap in research to inform our decisions.

This new NIH-funded study is significant due to the fact it provides an opportunity to gather formal data for what many providers doing transgender health and mental health care already know from experience. This will help the field to better understand the impact of puberty blockers and cross-sex hormones while generating data that will optimize the medical and mental health care for trans youth. It is important to note that this research is observational (as opposed to interventional) because it would be unethical to have a control group where medical treatment is withheld in order to observe differences between the two groups.

In an effort to carry tenets from this model to inform the research process, I do my best to create a gender-affirming experience while being transparent about the fact that participating in research (and being asked structured questions about sensitive areas of life) can feel pathologizing and objectifying regardless of what I do as study coordinator.

In an effort to decrease any potential discomfort and distress experienced by participants, the study primarily uses computer-based self-reporting surveys to give youth/parents with an opportunity to answer sensitive questions without having to verbally disclose personal information to study staff. I also speak with the participants before starting the research activities about the presence of questions that may not feel affirming or relevant to their experience.

Discussing what to expect with participants helps create an environment of trust, safety, sensitivity, transparency, and honesty in each research visit.

I want to encourage others considering research with trans youth to be affirming where you can be, realizing there are small ways you can make a big difference.

Here are a few tips:

  • Advocate for participants to be able to use affirmed names on informed consent and other forms
  • Check-in with youth about the name and pronoun as a standard part of follow-ups to create opportunities for youth to be affirmed and share potential changes
  • When a youth questions, reacts, or comments a non-affirming question, validate those feelings
  • Establish rapport in an effort to allow youth to feel as human as possible in an environment that is potentially pathologizing and objectifying
  • Stay in contact with families as necessary between study visit. This can help youth/families to feel more connected to research and help build rapport outside of the hospital setting
  • Be as gracious and appreciative as possible. Recognize that youth and parents are taking a significant amount of time out of their schedules to participate and it can be challenging to be faced with some topics addressed in the research
  • Provide numerous opportunities for participants to give feedback, explaining to the participant how that feedback will be communicated to the whole research team

About Mere

Mere Abrams, MSW, ASW, is a Gender Specialist, educator, consultant and advocate in the San Francisco Bay Area. Mere currently has a private practice in Oakland, California, where Mere provides gender affirming counseling, consultation, coaching and advocacy to children, teens, and adults. Mere is also a clinical researcher at the UCSF Child and Adolescent Gender Center working on the first NIH sponsored research studying long term medical and mental health outcomes for trans youth. Mere serves on the Board of Engender, a non-profit organization with the mission of supporting gender diverse youth, their families and communities by strengthening self-determination through direct services and programming.

Follow @MereTheir on Instagram or Twitter, or reach out to them on their personal website.

2 responses to “Patients & Providers: Affirming Practices for Gathering Research Data

  1. This is great to read. I like being reminded of the terms trans, non binary **and agender as they else to youth. There is no sharing buttons on your blog. Is this on purpose? I would love to share esp on twitter to bookmark it for myself and spread the word? Masina

    Masina Wright ⚓️
    MS3 – UNECOM
    Cell: 207-233-3944
    ________________________________

    • Hi Masina, thanks for commenting. You should actually indeed be able to share the post. If you aren’t able to see the buttons on your web browser or mobile device, you can always copy and paste the link!

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