Rites of Passage Study

Sharing the following opportunity as listed on my friend ink’s substack:

Rites of passage research is incredibly important to me in my journey of recovery and becoming. Through initiating to adulthood in community, to learning to truly be alone, rites of passage work has fostered an unwavering sense of knowingness and purpose into my life that I hope all young people get the privilege to experience.

We have all grown up in vastly different ways. Qualitatively, there is no one growing up story alike another.

With this, we want to know more about how you grew up.

We are building an understanding of how our generation of young people have come into age as we seek to understand its impacts on health, toward future programs.

This is an incentivized opportunity ($20 bookstore giftcard) to contribute to the advancement of rites research, as we move toward implementing ways of knowing and being that support growing up.

These questions are in-depth and may be uncomfortable. Only engage if you feel you have the time to donate your story to the cause. Otherwise, please feel free to disregard or send feedback.

Find everything you need to know here, and thank you for supporting the research.

New research findings from The PRIDE Study

The Pride Study is the first national longitudinal (aka long-term) study of the LGBTQ+ community. To join as a participant, you need to be living in the US (or US territories), be 18+ years old, and be able to read and understand English. You also need to be a part of the LGBTQ+ community (duh!). You can learn more here.

 

The journal Neurology has also published the latest findings from The PRIDE Study. This study is important because it is the first to look specifically at LGBTQ+ people’s experiences with headaches and the connections with trauma. This study illustrates how common headaches and migraines are for LGBTQ+ people.

What Did We Learn?

A total of 3,325 participants took the survey; 2,142 (64%) reported experiencing headaches and 1,126 (34%) reported experiencing migraines. On average, most people with migraines reported the strength was moderate or severe and frequent or strong enough to experience migraine-related disability, meaning the migraines affected their ability to participate in work, school, or home life. If they had a history of trauma and discrimination, they also were more likely to have migraines frequent or strong enough to experience migraine-related disability. However, for participants who had a history of depression, anxiety, or post-traumatic stress disorder, those who also had a history of trauma and discrimination were not more likely to experience migraine-related disability compared to those without a history of trauma and discrimination. This suggests that mental health conditions play an important role in experiencing migraine-related disability. Most of the people with migraines had access to a clinic or doctor’s office for healthcare (88%). About 42% of people with migraines wanted to see a specialist. However, 37% of this group had difficulty seeing a specialist, with the most common reason being that their insurance did not approve it. Additional reasons include their primary care doctor did not place the referral, the specialist was not accepting new patients, there were no specialists in their town or city, or the specialist refused to see them.

What Does This Mean for Our Communities?

This study showed that headaches and migraines are common for LGBTQ+ people, similar to the general public. We learned that many LGBTQ+ people with migraines do not have access to a specialist to help provide treatment. This can mean that headaches are not treated as well as they could be, which is important for primary care doctors to be aware of. LGBTQ+ people should also consider how their experiences with trauma, discrimination, and/or mental health conditions may have a connection with their experiences with migraines.

What’s Next?

Further education is needed for healthcare providers and specialists about the experiences of LGBTQ+ people with headaches. Studies about migraines or their treatment should collect information about sexual orientation and gender identity from participants to further understand how LGBTQ+ people are affected. Further research is needed to look at the barriers that LGBTQ+ people face when it comes to accessing healthcare, including looking at other aspects of their identity, such as race, ethnicity, or income level. The connection between depression, anxiety, and post-traumatic stress disorder with migraines should also be looked at further, as treatments for these mental health conditions may also help reduce the effects of migraines.

Further Reading

Rosendale N, Guterman EL, Obedin-Maliver J, Flentje A, Capriotti MR, Lubensky ME, Lunn MR. Migraine, migraine disability, trauma, and discrimination in sexual and gender minority individuals. Neurology Jul 2022, 10.1212/WNL.0000000000200941. https://doi.org/10.1212/WNL.0000000000200941.

We combined data from The PRIDE Study’s 2018 Annual Questionnaire and state healthcare policy protections from the Movement Advancement Project to understand whether state policies are related to decisions to avoiding healthcare among transgender and non-binary people.

This is the first study to look at the role of healthcare anti-discrimination policies in a state and whether the presence of those policies is related to the choice to avoid seeking healthcare among transgender and non-binary people.

What Did We Learn?

We found that experiencing poor treatment in healthcare related to one’s gender identity or expression was related to avoiding healthcare services in the past year. We found that the presence of state healthcare anti-discrimination policies did not change the relationship between poor treatment in healthcare and someone avoiding healthcare services in the past year.

What Does This Mean for Our Communities?

Transgender and non-binary people who live in states with healthcare anti-discrimination policies still avoid seeking healthcare. This is concerning because it increases the risk of poor health because illnesses may go untreated and health concerns may go un-diagnosed.

What’s Next?

We need to look at how healthcare anti-discrimination policies are put in place and how individuals and healthcare organizations are held accountable when poor experiences are reported. There is also an opportunity to look at ways to communicate with transgender and non-binary communities about what the policies in their state are and what their options are when poor treatment happens. We also need to look at how healthcare decisions are made by sub-communities within trans communities, such as trans people of color and trans people who may be undocumented.

Further Reading

Clark, K.D., Luong, S., Lunn, M.R., Flowers, E., Bahalkeh, E., Lubensky, M.E., et al. Healthcare Mistreatment, State-Level Policy Protections, and Healthcare Avoidance Among Gender Minority People. Sex Res Social Policy. 2022. Epub 2022, July 15. doi:10.1007/s13178-022-00748-1

Muscle dysmorphia means that someone is worried about not being muscular enough. Gender-expansive people do not identify as being exclusively a man or exclusively a woman. We asked gender-expansive people in The PRIDE Study to fill out a widely used survey in health research about this issue.

This was the first study to use these survey questions with gender-expansive people.

What Did We Learn?

We found three categories of concerns that gender-expansive people have about muscles: 1) a desire to be bigger and more muscular, 2) a dissatisfaction with the way their body looks, and 3) problems with normal life functions (such as passing up social activities because of their workout schedule).

What Does This Mean for Our Communities?

This survey is appropriate for use with gender-expansive people to understand their concerns around muscles. These results can help providers and researchers understand the muscle-related problems that gender-expansive people are having and ask better questions to provide them with better care.

What’s Next?

We want to study concerns about muscles among transgender women.

Further Reading

Compte EJ, Cattle CJ, Lavender JM, Brown TA, Murray SB, Capriotti MR, Flentje A, Lubensky ME, Obedin-Maliver J, Lunn MR, Nagata JM. Psychometric evaluation of the Muscle Dysmorphic Disorder Inventory (MDDI) among gender-expansive people. J Eat Disord. 2022 July;10:95. doi: https://doi.org/10.1186/s40337-022-00618-6

Participate in the International Kink Health Study

KINK HEALTH Adventurous people deserve exceptional care. kinkhealth.org TASHRA presents an international health study and invites YOU to learn if you are eligible. Go to kinkhealth.org Do you have recurring, long-standing fantasies that focus on kink, bondage, and fetish? Our goals: • The IKHS will document the prevalence of injuries and medical complications arising from kink activities • Examine the health status of kink-involved people; and document how healthcare is utilized by kink The involved people International • Investigate how connections to kink communities Kink Health affect people's health and well-being Study (IKHS) Contact us with other questions at KinkHealth2@protonmail.com *Complete a short survey to determine your eligibility for this study at kinkhealth.org

The International Kink Health Study is now LIVE!

The International Kink Health Study (IKHS) is a research project about the physical and mental health, childhood experience, sexuality and healthcare of those around the world with recurring fantasies and practices that involve kink/BDSM/leather and fetish.

An expansion of our 2016 research survey, this study plans to invite participants to become part of a group of kink interested people from around the world. We will ask them to complete yearly surveys over a number of years. We hope that they will help us understand more about what it means to be kinky, about their health and wellbeing, their kink lives and pleasure, their relationships and roles, their injuries and their experiences of healing.

We are researchers with deep roots in the kink community and who want to make sure that this information benefits the kink community. Won’t you think about joining with us on our upcoming adventure?

Want to learn more, see if you’re eligible, or take the survey?
Pop over to the study’s website today.

2021 Care Rationing Survey

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

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

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

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?

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

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

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.