Category: research opportunity

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.

Study: Mental Health Professional Shortage Areas

Posted on by Grayson Schultz

Did you know that 34% of Americans live in areas with a shortage of mental health providers?

One group is looking to study this in a project titled Understanding Pathways to Care For Individuals in Mental Health Professional Shortage Areas, with Investigators Dr. Munmun De Choudhury and Dr. Neha Kumar. This project is a joint research initiative between the SocWeb and TanDeM Labs at the Georgia Institute of Technology, along with various partners and stakeholders from community-based mental health advocacy organizations.

What Am I Being Asked To Do?
You are being asked to be a volunteer in a research study. This page will give you key information to help you decide if you would like to participate.  Your participation is voluntary. As you read, please feel free to ask any questions you may have about the research.

What Is This Study About and What Procedures Will You be Asked to Follow?
The purpose of this study is to better understand how people find access to mental healthcare. You will be asked survey questions about yourself, as well as the different resources you use to feel better when you are not feeling well.

If you decide to be in this study, you will be asked survey questions about where you live and how you have sought support for mental health concerns. You will not be compensated for participation in this study

Are There Any Risks or Discomforts you Might Experience by Being in this Study?
Survey questions deal with your mental health background and may touch on topics you do not want to discuss. You are not required to answer any questions and choose to not answer and move to a different question or choose to stop participating in the study at any time.

What Are the Reasons You Might Want to Volunteer For This Study?
You are not likely to benefit in any way from joining this study. However, your participation in this study may assist researchers in understanding how people in resource-limited areas find access to mental healthcare.

Study link

Questions about the Study
If you have any questions about the study, please reach out to Sachin Pendse.

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.

MCAS and Quality of Life Study

Posted on by Grayson Schultz

Understanding Factors Associated with the Well-Being and Quality of Life of Adults with Mast Cell Disorder

Link to participate – study ends Oct 30

Why is the survey being conducted?

Mast Cell Disorder is an increasingly widespread group of incurable chronic diseases characterised by a range of unpredictable and spontaneous symptoms, a high treatment burden, and long diagnosis lead-times. The purpose of this survey is to explore the factors associated with the well-being and quality of life of adults with Mast Cell Disorder. Results will also be used to inform the development of a wellbeing intervention for people with Mast Cell Disorder.

What does the survey involve? 

You are asked to do an online survey which will take 30-45 minutes. This will ask questions about you (your gender, age, ethnicity), your condition (type of Mast Cell Disorder, symptoms, current treatment), your support network, your healthcare experiences, and also your feelings, perceptions and views about living with Mast Cell Disorder. You can also save the survey at any point and return later – the survey will automatically give you a return code.

Who can participate in this survey? 

This survey is open to adults (aged 18 years or older) living with Mast Cell Disorder. Participants need to read and write in English.

Your consent

Completion and submission of the survey online implies your formal consent to take part in the research. It also permits your responses, including any written comments, to be used anonymously in research outputs.

Benefits and risks to you

By taking part in the survey, you can share your experiences of Mast Cell Disorder, which will help raise awareness of the effects that the condition might have on the daily lives of others with the condition. This information will be used to inform a new wellbeing intervention for people with Mast Cell Disorder. If you agree, you will have an opportunity to go into a draw to win one of 10 AUD$50 Amazon gift cards (or equivalent based on your location) as a thank you for participating in this survey. You will also have an opportunity to be invited to participate in future related research, including a wellbeing intervention.

You will be asked to give up some of your time to participate in the survey, which may be up to 45 minutes. Anticipated risks are negligible. As you will be completing the questionnaire from your own home, you will be in your own safe environment. It may be that some of the questions prompt you to think or feel more about your wellbeing. If you like to seek support for this, you can connect with your health professional and/or contact support organisations like the following in your home country (see study landing page).

How will we use any personal information?

We will summarise information across respondents so that we can describe the range of people who responded to the survey and explore commonalities.

If you choose to go into the prize draw, we will request your contact details (e-mail address) to enable us to notify the winners after the draw of the participation prizes. We will delete this information after the draw.

If you express interest in being contacted about future research or the wellbeing intervention, we will also request your contact details (e-mail address).

In both these instances, your email address will be stored separately from your survey responses, so that you cannot be linked in any way to your survey responses and cannot be identified by third parties.

No email addresses will be reported in any research publications or outputs arising from the study.

How will this personal information be stored?

All data will be entered into an electronic database that will be kept in a secure Griffith University research data drive. All data will be retained for five-years from the end of the project or, if later, the date of the last publication. It will then be deleted.

Privacy statement 

Information collected from this study is confidential and anonymous. Information will not include your name. Any personal information collected is confidential and will not be disclosed to third parties without your consent, except to meet government, legal or other regulatory authority requirements. An anonymised copy of this data may be used for other research purposes. For further information consult the University’s Privacy Plan at http://www.griffith.edu.au/aboutgriffith/plans-publications/griffith-university-privacy-plan or telephone 07 3735 4375.

Your participation is voluntary

Completion of this survey is entirely voluntary. You are free to stop or withdraw from the survey at any time, without penalty. Whether or not you choose to participate in this study will have no impact on your current or future relationship with your support entity or Griffith University or any other organisation.

The ethical conduct of this research

Griffith University conducts research in accordance with the National Statement on Ethical Conduct in Human Research. If you have any concerns or complaints about the ethical conduct of this research project, please contact: The Manager, Research Ethics, Office for Research, Bray Centre, Nathan Campus, Griffith University (Tel: +61 07 3735 4375 or researchethics@griffith.edu.au).

Distribution of results

Individual results will not be provided at any point. Results will also be written up in the PhD in Clinical Psychology thesis of Kylie Veale Sotheren. Results may also be written up for publication in scientific publications/journals, and presented in relevant forums e.g., conferences.

Feedback to you

We will produce a 1-2-page summary of the findings, which will be sent to your support group or member society/organisation. We will also post this summary to the MCD and Quality of Life page on Facebook at https://www.facebook.com/MCDandQoL. Alternatively, you are free to contact the research team to receive a summary of the findings and can do so without explanation for your request.  Winners of the prize draw will be directly notified by email. Notification of the prize draw and winner locations will be published on the study webpage (https://www.facebook.com/MCDandQoL).

Questions / further information

For further information, or if you have any questions, please contact:
Kylie Veale Sotheren, Investigator, kylie.vealesotheren@griffithuni.edu.au

Link to participate – study ends Oct 30

Gender Census 2021

Posted on by Grayson Schultz

Most people fit tidily into one of these categories:

  • Woman/girl – all the time, solely, and completely (may be cisgender or transgender)
  • Man/boy – all the time, solely, and completely (may be cisgender or transgender)

This survey intends to collect information about everyone who DOESN’T fit into this system. Anyone who doesn’t feel like they fit into one of these two boxes is invited to participate. There are no geographical restrictions.

If you hesitate or struggle to place yourself into just one of the two boxes, or if you know for sure that these boxes were not made for you, please take the survey!

Research Opportunity Centering the Trans Experience

Posted on by Grayson Schultz

Earlier this week, I participated in a study that is looking for more participants. As a researcher, too, I felt that the study asked important questions about identity, representation, and safety. Chris is especially focused on gathering more BIPOC voices. Please see the information below:

Centering Trans-gender Experiences of Marginalization, Precarity, and Representation Survey

Experiences of trans-gender people are often not represented in research that is conducted with members of the LGBTQ+ community. When research does focus on trans-gender experiences, the participants tend to be more economically or socially privileged. The purpose of this research is to challenge that trend and create the opportunity for under-represented trans-gender experiences to be shared and heard.

This informational survey is designed to provide the researcher, Christine Strayer, with important background information to better prepare for your interview. Your participation in this study is completely voluntary and the highest priority of this research is to keep your identity and information confidential.

Participation in this study is completely voluntary. Experiences of trans-gender people are often not represented in research that is done with members of the LGBTQ+ community. When research does focus on trans-gender experiences, the participants tend to be more privileged in some way. The purpose of this research is to challenge that trend and create the opportunity for more trans-gender experiences to be shared and heard.

This study will also serve as Christine Strayer’s dissertation for the requirements of earning a doctoral degree. If you take part in the research, you will be asked to take an initial survey that asks you to share some of your background information as well as participate in an online, video interview. Your time in the study will take approximately 15 minutes to complete the survey and approximately 70-80 minutes to participate in the interview. Possible risks and costs to you for taking part in the study may be discomfort from sharing personal experiences that you may perceive as sensitive or traumatic, the inconvenience of time required to participate in taking the survey and speaking in the interview, and the remote possibility that your identity may be disclosed. The potential benefit of taking part may be that your experiences as a trans-gender person are given the highest priority and your concerns will be heard. In addition, you can anticipate a small gift to thank you for your time and emotional labor because your contribution is deeply appreciated. Your alternative to taking part in the research study is to not take part in it.

Western Michigan University Sociology Department
Principal Investigator:         Dr. Angela Moe
Student Investigator:       Christine Strayer

To participate, click here.

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.

Pro Domme Research

Posted on by Grayson Schultz

Grace, a Pro Domme in the Orlando area, is doing some exploratory research regarding the habits of clients who purchase the services of Pro Dommes.

She would like to use the information to help the industry at large, as very little research exists on the topic today. The survey functions to get some idea of how clients of different demographics find Pro Dommes.

At the end of the survey, it asks if you would like to participate in a more in-depth interview. Please fill out that portion if you would like to contribute to connecting more quality clients to Dommes that match their desires.

The information that you share here is private and will only be used for statistical analysis. If you choose to share your email, it will only be used to contact you for a more in-depth interview.

You can learn more here or take the survey here.

Survey on Chronic Pain & Kink

Posted on by Grayson Schultz

sunny picture of a femme person in a field with an orange overlay and white text: Survey on Chronic Pain & Kink - Chronic Sex

Caroline Ballinger, a psychology student working in Dr. Karen Beale’s lab at Maryville College, is working on their senior thesis. They are researching the ways that people living with chronic pain cope and how that relates to their sexual behavior and satisfaction. This research survey has been approved by the Institutional Review Board and can only be taken by people who are 18 years old or older.

If you choose to participate, there is a link below that will take you to a 30-minute anonymous survey. You will be asked specific questions about sex and your chronic pain. Some of the questions are of a very sensitive nature, but please answer the questions as accurately and honestly as possible. If at any point during the survey you decide that you no longer want to participate, you can choose to stop taking the survey with no penalty.

If you would like more information about this topic, resources will be shared at the end of the survey, and you may contact Caroline Ballinger with any questions or comments, or you may contact her supervisor Dr. Karen Beale.

You can complete the survey here.

I took it and it was super easy. I hope you’ll consider taking it, too.