Author Topic: US Transgender Barriers to Care Survey  (Read 477 times)

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Offline Susan

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US Transgender Barriers to Care Survey
« on: March 08, 2018, 05:17:48 pm »
US Transgender Barriers to Care Survey

Important: Please carefully read the following information.

The aim of this study is to evaluate the barriers to health care experienced by trans and gender non-conforming individuals, with a focus on gender affirming surgery. The survey was created by researchers at the University of Utah who are studying transgender health.

This survey has been evaluated and approved by the University of Utah Institutional Review Board (IRB 00105384).

Who is this survey for?

This survey is for individuals who identify as trans and/or gender non-conforming. It aims to collect information on the health care experience of this community.

You do not need to have transitioned to complete the survey; you also do not need to be planning on transitioning. The survey changes depending on your answers to gather as much relevant information as possible.

Your answers are entirely anonymous and you can choose to not answer or exit the survey at any point. If you choose to provide written feedback regarding your health care experience, we may publish these quotes in scientific publications, however no identifying information will be published and these responses will not be linked to your survey answers.

Why is this study being done?

This study is being done to better understand the demographics, health care experience, choices for and barriers to health care and surgery experienced by trans people in the United States. The findings of this study will influence future research and will benefit those caring for members of the trans community.

What happens if I agree to take part in this research study?

If you agree to participate, you will be asked to complete a short, anonymous and secure survey. The purpose of the survey is to gather information about you and your experience with health care as a trans person in the United States.

How long does this take?

The research study is online only and should take between 5 and 10 minutes to complete.

Are there any risks or discomforts of participating in this study?

Participating in this study poses no risks that are not usually encountered in day-to-day life. The answers you give are voluntary and anonymous. No identifying information is collected. Some of the questions are about personal health choices and desires for future care, and may make you feel uncomfortable. You can skip over these questions or exit the survey at any point if you do not wish to continue. If you are in distress, there is a list of hotlines and available resources at the end of the survey for you to access.

We understand that terms and labels do not describe everyone. We have tried to be as inclusive as possible with our questions, however we respect that some people may not feel represented. We apologize if our choice of language is off-putting or offensive. There is a section at the end of the survey to provide feedback on these issues.

Are there any benefits to participating?

The results of this research will be used for the benefit of the trans community. There isn’t a lot of information on why trans people may be unable to access health care, and we hope that the results of this survey will help steer future research and health policy to help individuals get the care they need. You will not benefit directly from the survey.

Will I be paid for my participation?

No, the survery is on a volunteer basis only.

How will my information and my answers be kept anonymous and secure?

Your survey responses will be anonymous, and no information that could identify you will be collected. All of your answers are voluntary – you do not need to tell us anything you want to keep private. All information that is collected is kept confidential. If you do write personal information in the survey, the research team will not publish this in any form and will keep the information private. General statements about your health care experience may be reproduced in scientific publications, however NO identifying information will be divulged, and they will not be linked to your other answers in the survey.

The survey software (RedCap) used to gather the information is secure and anonymous. The University of Utah Institutional Review Board approved this study (IRB 00105384).

What are my rights if I take part in this study?

Taking part in this study is your personal choice; you have the right to refuse participation. You have the right to exit the study anytime after you start it.

Who can I contact if I have questions about the study or survey?

You may contact the research team by emailing u6013022@Utah.edu or by calling 1-801-213-4335.

If you would like to speak with someone outside of the research team regarding this study or your rights as a participant, you may contact the University of Utah Institutional Review Board.

University of Utah Institutional Review Board
Research Administration Building
75 South 2000 East Salt Lake City, UT 84112
Phone: 1-801-581-3655

Take the survey
https://redcap01.brisc.utah.edu/ccts/redcap/surveys/?s=HKFTTTYC4H
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Offline Jessica

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Re: US Transgender Barriers to Care Survey
« Reply #1 on: March 08, 2018, 06:23:24 pm »
Thank you Susan for posting this.  Having more data will make it better to see how some areas are working and how some other areas need to be fixed.

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Offline Lady Sarah

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Re: US Transgender Barriers to Care Survey
« Reply #2 on: March 08, 2018, 07:29:55 pm »
Based on my 26 years of seeing doctors for hormone therapy and surgeries, I completed the survey, in the hopes that it can help everyone else in the trans community. Nobody should have to deal with some of the bigots I have endured in the medical profession.
started HRT: July 13, 1991
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trach shave: November, 1998
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Back surgery: October 20, 2016

Offline Susan

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Re: US Transgender Barriers to Care Survey
« Reply #3 on: March 09, 2018, 03:34:01 pm »
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We estimate that thanks to your share we received over 20 individual responses in under 12 hours - this is great!
20 responses is good but I would like to see them receive hundreds! Lets go people. I am moving this thread to the transgender talk forum for more visibility.

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Dear Susan:

Thank you so much for reaching out to us at the Transgender Barriers to Care Survey team! We very much appreciate you taking the time to complete the survey and help reach new respondents through your blog. We estimate that thanks to your share we received over 20 individual responses in under 12 hours - this is great!

We've followed you on Twitter (@barrierstocare) and we'd like to give a shoutout to your blog, if that's ok.

We will certainly share any upcoming publications or presentations based on our findings - we hope to release our findings at the 2018 Annual WPATH Meeting in Argentina later this year.

Any further help with spreading around the survey are certainly appreciated - you have a great responsive community following you and it's amazing how much reaction we get from thoughtful and engaged people like you. We definitely couldn't do it without you.

Thanks again,
Andrew Simpson
TG Barriers to Care

This was my response to them.

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Thank you for your kind words and for your actions on behalf of the transgender community. Facts are a great thing and I never object to more of them. Give it a few days you will likely get more. I look forward to reading about your study :) If we can be of assistance in the future please let us know.
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Offline PollyQMcLovely

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Re: US Transgender Barriers to Care Survey
« Reply #4 on: March 09, 2018, 04:07:06 pm »
Done. Well constructed survey.

Offline Quinn

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Re: US Transgender Barriers to Care Survey
« Reply #5 on: March 09, 2018, 04:34:39 pm »
I finished the survey you can add me to the list

Offline Susan

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Re: US Transgender Barriers to Care Survey
« Reply #6 on: March 09, 2018, 04:55:22 pm »
Expect to see more surveys in the future. I think it's important we get the facts out there.
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Offline Sarah_P

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Re: US Transgender Barriers to Care Survey
« Reply #7 on: March 09, 2018, 05:33:14 pm »
Yes, thanks for posting this Susan! I finished the survey just now!
I'd definitely be interested in taking more surveys like this.
--Sarah P

There's a world out there, just waiting
If you only let go what's inside
Live every moment, give it your all, enjoy the ride
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Offline HappyMoni

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Re: US Transgender Barriers to Care Survey
« Reply #8 on: March 09, 2018, 10:22:50 pm »
Done
If I ever offend you, let me know. It's not what I am about.
"Never let the dark kill your light!"  (SailorMars)

HRT June 11, 2015. (new birthday) - FFS in late June 2016. (Dr. _____=Ugh!) - Full time June 18, 2016 (Yeah! finally) - GCS June 27, 2017. (McGinn=Yeah!) - Under Eye repair from FFS 8/17/17 - Nose surgery-November 20, 2017 (Dr. Papel=Yeah) - Hair Transplant on June 21, 2018 (Dr. Cooley-yeah) - Breast Augmentation on July 10, 2018 (Dr. Basner in Baltimore) - Removed bad scarring from FFS surgery near ears and hairline in August, 2018 (Dr. Papel) -Sept. 2018, starting a skin regiment on face with Retin A

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Offline epvanbeveren

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Re: US Transgender Barriers to Care Survey
« Reply #9 on: March 10, 2018, 02:50:17 am »
Filled out. Add me to the growing list of participants. <3
I am a K. MacPhee girl, re-born on October 4 2017 in Raleigh/Durham NC. USA
I was AMAB on May 6 1963 in Dordrecht, the Netherlands.

OUT and proud - 2014
HRT - 2015
Legal - 2016
GRS - 2017

Full Time - 01/01/2015:
first day (01) of new life (01), '15 = opposite of 51 (my age at the time)


Offline Kiera

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Re: US Transgender Barriers to Care Survey
« Reply #10 on: March 10, 2018, 04:34:35 am »
Expect to see more surveys in the future. I think it's important we get the facts out there.

It's a better devised survey than a lot of tiresome ones I've seen. Noticed, based on current response(s), it displays extended questions and also skips whole pages entirely. I jumped from page 20 (I think) straight to end #25.

Susan's could create their own survey. I have a military grade system that does not allow "retakes" (ie: answering 'no' to 1st q). Instead, it tracks IP for the sole purpose of either saving answers if quitting early, returning to exactly where left off /OR/ not saving responses at all.

Been playing with it for a while, just hard to find time!
"But it's no use now," thought poor Alice, "to pretend be two people!
"Why, there's hardly enough of me left to make one respectable person!"

Offline Deborah

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Re: US Transgender Barriers to Care Survey
« Reply #11 on: March 10, 2018, 05:09:27 am »
I completed the survey a couple of days ago.


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Offline JaneinFL

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Re: US Transgender Barriers to Care Survey
« Reply #12 on: March 10, 2018, 11:23:47 am »
Done!

Offline Bobbie Ann

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Re: US Transgender Barriers to Care Survey
« Reply #13 on: March 10, 2018, 12:29:19 pm »
I completed the survey seconds ago.





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Offline barrierstocare

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Re: US Transgender Barriers to Care Survey
« Reply #14 on: March 18, 2018, 02:07:45 pm »
Hi there! We are the survey organizers and we would just like to thank Susan and everyone here at this great forum who have taken and shared our survey! We are getting lots of great information and shares through organizations like this are very, very appreciated!

If you have any questions for us please fire away. We would be very grateful for continued shares of the survey -- you can follow us on Twitter @barrierstocare and the short survey link is: http://j.mp/2j4hoHJ

Thanks again, everyone. We know that surveys can be tiresome and not super fun so we very much appreciate all the effort!

Offline Jessica

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Re: US Transgender Barriers to Care Survey
« Reply #15 on: March 18, 2018, 03:50:55 pm »
Thank you so much @barrierstocare for creating this survey.  It hopefully will identify areas that work and where help is needed.  There is far too little data on transgender issues. 
I hope many more of us here at Susan’s will take this survey and give you a balanced measure.


Jessica


"If you go out looking for friends, you are going to find they are very scarce.  If you go out to be a friend, you'll find them everywhere."

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