Category: research

2021 Care Rationing Survey

Posted on by Grayson Schultz

2021 Care Rationing Survey - #NoBodyIsDispoable Fat Legal Advocacy, Rights, & Education Project - Have you struggled with or delayed getting medical care during the pandemic? Are you a provider concerned about care rationing at your organization? Please take this survey.

The #NoBodyIsDisposable Coalition and the Fat Legal Advocacy, Rights, & Education Project have created a short survey to hear from people who are being denied medical care because of limited medical resources. Responses will be used to help advocate for fair medical treatment.

This survey was created to help gather the stories of folks who are having trouble getting medical care during COVID. Stories will be shared to create awareness and support advocacy. (Respondents can choose whether or not to share anonymously.)

Who should take the survey?

Please take the survey if you or someone you know had a hard time getting medical treatment during COVID due to limited medical personnel and supplies/equipment shortages and you suspect part or all of the reason you did not receive necessary care was based on discrimination including but not limited to your weight, disability, race, age, or other factors.

Take the survey if you have been delaying necessary medical care because you worry if you do get COVID that you will be deprioritized for life-saving medical treatment based on your weight, disability, race, age, or other factors.

Take the survey if you work at a health care organization and have concerns about the care rationing policy, or how it is implemented.

Link to the Survey

The survey is available in English and Spanish.

Please help spread the word. They will be reviewing answers on an ongoing basis.

Sexual and reproductive health language used by sexual and gender minority people

Posted on by Grayson Schultz

The following is from an email sent out by the Pride Study yesterday. Want to contribute to research like this? Join the Pride Study today! It’s really fun and easy. Learn more at PrideStudy.org. For information on all of their studies, go to: pridestudy.org/research.

Full article
Ragosta S, Obedin-Maliver J, Fix L, Stoeffler A, Hastings J, Capriotti MR, Flentje A, Lubensky ME, Lunn MR, Moseson H (2021) From ‘shark-week’ to ‘mangina’: an analysis of words used by people of marginalized sexual orientations and/or gender identities to replace common sexual and reproductive health terms, Health Equity 5:1, 1–11, DOI: doi.org/10.1089/heq.2021.0022

Community-Friendly Summary of Findings
What Did We Do?

We asked cisgender sexual minority women (CSMW) and transgender, non-binary, and gender-expansive (TGE) people from all over the United States about the words they use to describe sexual and reproductive health processes and their body parts. Cisgender sexual minority women describes women who were assigned female sex at birth and who identify as asexual, bisexual, lesbian, pansexual, queer, and/or another sexual orientation outside of exclusively straight/heterosexual. Transgender describes someone who identifies as a gender different from that most commonly associated with their sex assigned at birth. Nonbinary describes someone who does not identify as only a man or a woman, but may identify as both or neither, or a multiplicity of genders. Gender-expansive is an umbrella term for someone who may identify with and express their gender in many ways outside of what is expected of them.

Survey respondents were provided with definitions for 9 common sexual and reproductive health terms for body processes, activities, and body parts. The terms we asked about were: abortion, birth control, breasts, penis, period, pregnant, sperm, uterus, and vagina. They were asked if they use the term. If they did not use the term, they were asked to provide their own word.

What Was New, Innovative, or Notable?

This was the first study, to our knowledge, to directly measure whether sexual and gender minority people use medical terms to talk about their sexual and reproductive health, and if not, what words they use. The researchers designed the study in an innovative way, where the words/phrases that respondents provided actually replaced the medical, sexual, and reproductive health terms throughout the survey. This allowed participants to customize their survey while allowing us to learn more about their sexual and reproductive health with language familiar and comfortable to them.

What Did We Learn?

CSMW and TGE respondents use a diversity of words to describe their bodies and experiences. Among 1,704 TGE and 1,370 CSMW respondents, 613 (36%) TGE respondents and 92 (7%) CSMW respondents replaced at least one medical term with their own terms. Some of the most commonly used words among TGE respondents were: “chest” for breasts (n=369, 72% of replacement words), “front-hole” for vagina (n=96, 33% of replacement words), and “dick” for penis (n=47, 45% of replacement words).

Many (23%) replacement words/phrases were only used by a single respondent. For example, one person provided the word “Harold” for uterus and another provided “freedom!! (in Scottish accent)” for abortion.

TGE respondents also said that word-use depended on the context, that some terms did not apply to them, or that they did not have a replacement word/phrase. For example, one respondent for the word vagina responded, “depends on the context- if it’s during sexytimes I usually avoid using the word. If I’m talking about my period I’m okay saying vagina.” Another respondent for the word uterus responded, “I’ve never had a reason to think of what to call it honestly. The only time I ever bring up that area is when talking about a hysterectomy.”

What Does This Mean for Our Communities?

Sexual and reproductive health terms used in clinical and research settings can cause discomfort and dysphoria (a feeling of anxiety and dissatisfaction) among some sexual and gender minority (SGM) people. Attention to word-use by providers and researchers could increase the quality of clinical and research experiences for SGM people. Providers and researchers should ask people what words they would like to use to refer to their bodies and experiences.

What’s Next?

To build upon this work, our team is studying alternatives to asking about sex assigned at birth and gender for screening purposes in clinical care. Specifically, we developed an anatomical organ inventory with transgender, non-binary, and gender-expansive community advisory board members. We are now testing this organ inventory to see if it may be a more accurate and affirming way to assess patient eligibility for certain healthcare services. This organ inventory would be provided alongside a patient-provided language form (like the one used in this study) to make health care experiences more relevant and patient-centered.

Take Action!

Visit http://www.pridestudy.org/study for more information.

Make sure you also check out Ibis Reproductive Health to learn more about Ibis’s work and browse their amazing community-provided resources on sexual and reproductive health relevant to transgender, nonbinary, gender-expansive, and intersex people.

2021 Gender Census Data Available

Posted on by Grayson Schultz

The Gender Census is an annual survey collecting data about the language we use around gender, particularly gender outside of the binary.

The highlights for me were that most people taking the survey were nonbinary, preferred no title at all (as opposed to Mr/Ms/Mx/etc), and utilize the singular they pronoun.

If you’d like to take a look, they have both the full and summary versions up.

Sex and Medical Care Survey – 2016

Posted on by Grayson Schultz

In the summer of 2016, I conducted a survey to gather initial information for a presentation I did at the Stanford University Medicine X Conference back at the beginning of my sexuality education work. (It was also back when I was using my birth name.)

It recently occurred to me that I never really published that data, aside from the discussion of it at the conference.

Click here to continue reading.

Do you feel like you can talk to your HCPs about sex?

Posted on by Grayson Schultz

Pals, I’m running research! Come help!

When we say ‘HCPs,’ we mean healthcare providers. This could be a physician, nurse, medical assistant, physical therapist, or another medical professional directly involved in your care.

square graphic with two people of color resting their foreheads together - text says 'research opportunity | Do you feel like you can talk to your HCPs about sex, gender, and sexuality? | bit.ly/HCPsexuality | orchidsresearch.org

This survey is to measure concerns, attitudes, and ideas you may have about the conversation between health care providers and patients on sex. This survey is for those in a patient role and is only opened to people 18 and older in the United States or the US territories.

The information you share will be used to create a comprehensive and accessible guide to help you and others navigate discussing sex with providers easier in the future. This guide will be free and available via a number of methods so that you can utilize the one most accessible to you.

The answers you provide will be anonymous and only utilized for research or education around the discussion of sexuality and gender within healthcare. The cumulative percentages for questions will be used in order to discuss and share information with others. No identifying information will be collected, but you will be asked a number of sensitive questions around sex, sexuality, and healthcare interactions.

What is involved in this research?

This study consists of a one-time online survey using Google Surveys. ORCHIDS – The Organization for Research of Chronic Illness, Disability, and Sexuality – is conducting this survey. You can learn more about our group at orchidsresearch.org.

It should take approximately 30-45 minutes to complete the survey.

Are there benefits to being in the study?

There is no direct benefit for you. By taking part in this survey, though, you may contribute to knowledge about talking with providers around sex and sexuality. This may be used in the future for medical education as well as presentations and other learning materials.

What are the possible risks of the study?

There are no physical risks associated with this study. There is the potential to relive difficult situations throughout the course of this survey. You may stop your participation in this study at any time by closing the survey.

As with anything online, there is a potential risk of loss of privacy. We will make every effort to keep your information private. Naturally, this cannot be guaranteed.

What are the costs and compensation?

There are neither costs nor compensation.

At the end of the survey, you will be given an additional link to put in your email address if you want to be among the first to access information about the guide we’re creating.

Who do I contact for questions?

If you have questions or concerns, please contact Kirsten Schultz. This can be done via email (kirsten -at- chronicsex.org).

Do you agree to participate in this study?

By clicking ‘next,’ you allow us to utilize your de-identified information in order to discuss issues related to sex and sexuality. This also allows us the ability to highlight the concerns you’ve shared in the final guide that will be created and available for free. You also certify that you are a person age 18 and over currently living in the United States or one of the US territories.

This survey will close on November 1, 2019.

If you’re interested, please note that you must live in the United States (or US territories – such as Puerto Rico or Guam) and be 18 years of age or older.

Ready? Let’s go! http://bit.ly/HCPsexuality

Gender Census 2018 Report

Posted on by Grayson Schultz

Gender Census‘ 2018 survey results are out!

If you haven’t heard of GC, it is ‘the blog for the annual survey of humans worldwide whose genders or lack thereof are not fully described by the gender binary.’ Every year, their goal is to run a survey about gender-related things and create a report.

This year, they covered the spelling of non-binary, the use of titles, pronouns, and what we use to self-identify.

You can check out the 2018 worldwide results here.

They’re also currently running a survey for English speaking peeps about titles we use. The questions are really easy, and the survey is quick to complete.

Research Opportunity: Disability and Reproductive Health

Posted on by Grayson Schultz

The following is a current research opportunity.

There is not enough research about women’s health–especially about women with disabilities!

We are doing this study to understand the day-to-day challenges of women with disabilities in getting women’s healthcare. We need a better way to learn how to provide the best care and meet the needs of reproductive-aged women with disability.

If you are an 18-40 year old woman with a physical, developmental, or cognitive disability, you may be eligible for our survey. Click here to go to the study page or email urad@utah.edu for more information. You can call 801-585-9360 if you’d like/need a member of the University of Utah nursing staff to assist you.

Additionally, filling out the survey gets you a chance to win a $20 Amazon gift card.

If you have questions, please contact Lauren Clark, RN, at 801-581-8576 or Sara Simonsen, CNM, at 801-595-9360.

Compersion in Nonmonogamous Relationships Study

Posted on by Grayson Schultz

Have you ever experienced joy (rather than jealousy) when your partner(s) found love with another partner, in the context of a committed, consensually nonmonogamous relationship? If you are 21 years old or over, speak English, and answered yes to the question above, you might be eligible to participate in a doctoral study on the topic of compersion.

Participation includes one 45 to 75 minutes-long interview (in-person or over Skype) and one 20 to 30 minutes follow-up interview. Your confidentiality will be protected. For more details, please contact Marie Isabelle Thouin-Savard, Ph.D. candidate at the California Institute of Integral Studies, at mariethouin@gmail.com.

Trans Experiences in Therapy

Posted on by Grayson Schultz

comic book style graphic with yellow background and red & black outlined text bubble: "Trans experiences in therapy research opportunity chronic sex"

A group of researchers from Towson University is conducting research on the experiences of therapy as an individual with a trans identity or history. I’m especially excited about this because trans people are even involved in the research!

If you choose to participate in this research, you will be asked to complete a brief online survey, which should take approximately 10-20 minutes to complete. During the survey, you will be asked to think about your experiences in therapy and provide examples of events that may have happened in these therapy sessions.

You will not be asked to give information that would allow anyone to identify you and you do not have to answer every question.

The Towson University Institutional Review Board has approved this study. If you have any questions regarding this research or its purposes, please contact the faculty advisor for this project, Dr. Paz Galupo, at pgalupo@towson.edu, or the primary investigator, Ezra Morris, at kmorri27@students.towson.edu. If you have any questions pertaining to your rights as a participant, please contact Dr. Elizabeth Katz, Chairperson of the Institutional Review Board for the Protection of Human Participants, at (410) 704-2236.

Click here to participate.

BDSM-Kink Online Survey

Posted on by Grayson Schultz

Do you have experience with BDSM/Kink sexuality (e.g., role play, bondage, dominance, discipline, S&M, eroticized pain and/or power play)?

Renae Mitchell and Charlene Muehlenhard at the University of Kansas are looking for volunteers to fill out an online survey about how people communicate in sexual encounters that involve BDSM/Kink sexuality.

They are looking for individuals

  • who are age 18 or over,
  • who have had at least two sexual encounters that involved BDSM/kink experiences and/or eroticized pain or power play, and
  • who are interested in filling out a short (less than 30-minute) anonymous online survey.

This study is being conducted as graduate student research at the University of Kansas and has been approved by the university’s institutional review board (IRB).

If you are interested in filling out a survey about your experiences with BDSM/Kink sexuality, click here.

Completion of the survey indicates your willingness to take part in this study and that you are at least 18 years old. If you have any additional questions about your rights as a research participant, you may call (785) 864-7429 or write the Human Subjects Committee Lawrence Campus (HSCL), University of Kansas, 2385 Irving Hill Road, Lawrence, Kansas 66045-7563, email irb@ku.edu. Additionally, you can reach Renae at rcmitchell@ku.edu or Charlene at charlene@ku.edu.