Capítulo V: Justificación Propuesta
5.03 Desarrollo
5.03.02 Estándares de programación
1. At what age would you like someone in the doctor’s office to ask you about your
gender identity? Below are some age ranges in years. Please circle the one you think is best.
3-6 7-9 10-12 13-16 17-18
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2. At what age would you like someone in the doctor’s office to ask you about your
sexual orientation? Below are some age ranges in years. Please circle the one you think is best.
3-6 7-9 10-12 13-16 17-18
18+
3. How would you like to be asked sexual orientation/gender identity questions? (Rank your answers from 1-7, with 1 being most preferred)
____ Out loud with parent in the room ____ Out loud without parent in the room ____ On paper with parent in the room ____ On paper without parent in the room ____ Electronic survey with parent in the room ____ Electronic survey without parent in the room ____ Another method:______________________
4. If your doctor or other staff ask you about your sexual orientation and gender identity questions out loud, how would you like them to phrase it? (Please use the space provided below)
________________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________
5. Which person in clinic do you want to ask you sexual orientation/gender identity questions? Please circle the one you think is best.
a. Your doctor b. Nurse
c. Front Desk Receptionist
d. Other (Please specify): ___________________
Here are two ways we could ask about your gender identity. Please answer the question and then let us know how we could make the question better.
6. What is your current gender identity? Please circle all that apply. a. Gender fluid
b. Agender c. Female
46 d. Male
e. Transgender Female/Trans Woman/Male-to-Female (MTF) f. Transgender Male/Trans Man/Female-to-Male (FTM) g. Genderqueer/Gender Non-conforming/ Non-Binary
h. Additional gender category, please specify______________
i. Don’t Know
j. Decline to Answer
7. Please use the space provided to describe any changes you would make to the above question such as the wording or its answers. It is okay to leave this answer blank.
________________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________
8. Where on this scale do you see your gender identify? Please place a star on the scale below.
9. What gender were you assigned at birth on your birth certificate? (Mark one answer) a. Male
b. Female
c. Decline to Answer
10. Please use the space provided to describe any changes you would make to the above question such as the wording or its answers. It is okay to leave this answer blank.
________________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________
11. If we asked you about your gender identity on paper, which method of questioning would you prefer?
a. Multiple choice question (similar to question #6) b. Scale (similar to question #8)
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Now, here are two ways we could ask about your sexual orientation. Please answer the questions and then let us know how we could make the question better.
12. What is your sexual orientation? Please circle all that apply. a. Gay, lesbian, or homosexual
b. Bisexual
c. Straight or heterosexual d. Pansexual
e. Asexual
f. An identity not listed: Please specify__________________
g. Don’t Know
h. Prefer not to disclose
13. Please use the space provided below to describe any changes you would make to the above question such as the wording or its answers. It is okay to leave this
answer blank if you can’t think of anything.
________________________________________________________________ ________________________________________________________________ ________________________________________________________________ _______________
14. Where on this scale do you see your sexual orientation? Please place a star on the scale below.
15. If we asked you sexual orientation questions on paper, how would you want us to ask these questions?
d. Multiple choice (similar to question #12) e. Scale (similar to question #14)
f. Another method: Please specify________________
Thank you for answering our questions! We will end the survey by asking some questions about you.
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17. Which of the following best represents your racial or ethnic heritage? Choose all
that apply.
a. Hispanic or Latino
b. Black or African American c. White
d. Native American or American Indian e. Asian / Pacific Islander
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Exhibit 2: Survey Script
Script for Approach Patients in Clinic
If participant is between 12-17 years old
AL: Hello, my name is Amalia Lee. I am conducting a research study about a topic that some people might consider sensitive in nature. I would like to include your child in my research project but before I do, I’d like to explain the study to you and get your permission to speak with your child.
Are you willing to hear about the study and consider if your child can participate? Patient: No
AL: Okay, thank you so much for hearing about my study. I hope you have a nice day! Parent: Yes
AL: Before we begin, can you please confirm the age of your child? Parent: States Child’s Age
AL: Thank you! The purpose of the study is to determine how patients would like to be asked sexual orientation and gender identity questions during a doctor’s office visit.If you agree, I will give your child a survey to complete that will take 5-10 minutes to answer. The questions will ask about their preferences for different ways we could ask these questions, as well as some questions about child.
AL: Would you be willing to give your child permission to participate in this short survey? Parent: No
AL: Okay, thank you so much for hearing about my study. I hope you have a nice day! Parent: Yes
AL (to the child): Now that I have your parent’s permission, would you like to participate in this survey?
Child: No
AL: Okay, thank you so much for hearing about my study. I hope you have a nice day! Child: Yes
AL: Okay, I will now read this assent form with you and a consent form with your parent. Afterwards I will obtain your verbal agreement and your parent’s consent for you to participate in this study.
After consent and assent: Here is the survey and a pen. The data from this survey will be
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stop the survey at any time. Please place the survey in this envelope when you are done. Thank you so much!
--- If participant is 18 years old
AL: Hello, my name is Amalia Lee and I am conducting a research study to determine how patients would like to be asked sexual orientation and gender identity questions during a doctor’s office visit.
Would you be willing to participate in this short survey? It will take about 5 minutes and will ask you about your preferences for different ways we could ask these questions, as well as some questions about yourself.
The data from this survey will be stored without any identifying information about you in a very safe place. You are welcome to stop the survey at any time. Would you be interested in
participating?
Patient: No
AL: Okay, thank you so much for hearing about my study. I hope you have a nice day!
Patient: Yes
AL (If 18 years old): Okay, I will now read and review this consent form with you and obtain your verbal consent to participate in this study.
After consent: Here is the survey and a pen. Please place the survey in this envelope when
you are done. Thank you so much!
Exhibit 3: Adult Consent Form
University of North Carolina at Chapel Hill Consent to Participate in a Research Study Adult Participants
Consent Form Version Date: April 4th 2018 IRB Study # 18-0357
Title of Study: Determining how patients would like to be asked sexual orientation and gender identity questions during regular pediatric clinic visits.
Principal Investigator: Amalia Lee
Principal Investigator Department: Public Health Leadership
Principal Investigator Phone number: 2404161894
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Faculty Advisor: Sue Tolleson-Rinehart
Faculty Advisor Contact Information: (919) 843-9477
_________________________________________________________________
What are some general things you should know about research studies?
You are being asked to take part in a research study. To join the study is voluntary. You may choose not to participate, or you may withdraw your consent to be in the study, for any reason, without penalty.
Research studies are designed to obtain new knowledge. This new information may help people in the future. You may not receive any direct benefit from being in the research study. There also may be risks to being in research studies.
Details about this study are discussed below. It is important that you understand this information so that you can make an informed choice about being in this research study.
You should ask the researchers named above, or staff members who may assist them, any questions you have about this study at any time.
What is the purpose of this study?
The purpose of this research study is to improve the care of patients in the pediatric clinic by determining how best to incorporate sexual orientation and gender identity questions in the clinical encounter. At present, no guidelines recommend when physicians should begin asking these sexual orientation and gender identity questions of their patients. In addition, it is important to know how to ask these questions, including what kinds of words and terms to use. Exploring the best way to ask these questions will help contribute to the process of making a safe
environment where children feel comfortable discussing these potentially sensitive topics with their doctors. The main aim of this study is what is the best way to incorporate sexual orientation and gender identity questions into a regular clinic office visit?
You are being asked to be in the study because you are a patient who attends either UNC Endocrine's Pediatric and Adolescent Gender Clinic or UNC Children’s Primary Care Clinic.
Are there any reasons you should not be in this study?
You should not be in this study if you are younger than 12 years old or are older than 18 years of age.
How many people will take part in this study?
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How long will your part in this study last?
We anticipate that it will take you up to 10 minutes to complete the survey. There is no follow up associated with this survey.
What will happen if you take part in the study?
This study involves an anonymous paper and pencil survey completed by a volunteer patients who are approached in their clinic room by the Principal Investigator (P.I) while they are waiting to see their provider. The P.I will introduce herself as a medical student and explain the study to you. If you are interested the P.I will obtain your verbal consent to participate in the study after reviewing this consent form with you. She will then give you the anonymous paper survey for you to complete independently. You have complete control over accepting or refusing the survey. In addition, you may stop the survey at any time and/or only answer questions that you chose. When you have finished the survey you will place it in the labeled envelope.
What are the possible benefits from being in this study?
We do not expect you to gain any other direct personal benefit as a result of this survey. Results from this survey may be used to change how this or other clinics ask patients about sexual orientation and gender identity. This may indirectly affect your future clinical care. Results would also contribute to the others’ understanding of preferred ways of providing care to patients.
What are the possible risks or discomforts involved from being in this study?
Unique risks associated with this study includes psychological risks associated with answering the questions of this survey. This risk includes embarrassment, emotional distress, and feeling uncomfortable with the questions. We will minimize these risks by reiterating that you may stop taking this survey at any time. We will also refer you to your medical provider, with whom you are to see in clinic today, if you endorse significant psychological distress. There may be uncommon or previously unknown risks. You should report any problems to the researcher.
How will information about you be protected?
This study does not collect any data that could violate your confidentiality, privacy, or results in any deductive identification (directly identifying you from a combination of indirect IDs). The survey for this study does not contain and identifiable data and all responses to the survey will be anonymous, nonetheless all data will be transferred among the research team through secure emails. Data will be stored and sent with password protected files.
Participants will not be identified in any report or publication about this study. Although every effort will be made to keep research records private, there may be times when federal or state law requires the disclosure of such records, including personal information. This is very unlikely, but if disclosure is ever required, UNC-Chapel Hill will take steps allowable by law to protect the privacy of personal information. In some cases, your information in this research study could be reviewed by representatives of the University, research sponsors, or government agencies (for example, the FDA) for purposes such as quality control or safety.
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What if you want to stop before your part in the study is complete?
You are in complete control of what you questions you choose to answer and which ones you want to leave unanswered for the survey. You can stop completing the survey at any time, without penalty.
Will you receive anything for being in this study?
You will not receive any incentive or monetary reward for taking part in this study.
Will it cost you anything to be in this study?
It will not cost you anything to be in this study.
What if you have questions about this study?
You have the right to ask, and have answered, any questions you may have about this research. If you have questions about the study, complaints, concerns, or if a research-related injury occurs, you should contact the researchers listed on the first page of this form.
What if you have questions about your rights as a research participant?
All research on human volunteers is reviewed by a committee that works to protect your rights and welfare. If you have questions or concerns about your rights as a research subject, or if you would like to obtain information or offer input, you may contact the Institutional Review Board at 919-966-3113 or by email to [email protected].
If all of your questions have been answered at this time, do you voluntarily agree to participate in this research study?
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Exhibit 4: Child Assent Form
University of North Carolina at Chapel Hill Assent to Participate in a Research Study Adolescent Participants age 12-17
Consent Form Version Date: April 4th 2018 IRB Study # 18-0357
Title of Study: Determining how patients would like to be asked sexual orientation and gender identity questions during regular pediatric clinic visits.
Principal Investigator: Amalia Lee
Principal Investigator Department: Public Health Leadership
Principal Investigator Phone number: 2404161894
Principal Investigator Email Address: [email protected]
Faculty Advisor: Sue Tolleson-Rinehart
Faculty Advisor Contact Information: (919) 843-9477
What are some general things you should know about research studies?
You are being asked to take part in a research study. Your parent, or guardian, needs to give permission for you to be in this study. You do not have to be in this study if you don’t want to, even if your parent has already given permission. To join the study is voluntary. You may choose not to participate, or you may withdraw your consent to be in the study, for any reason, without penalty.
Research studies are designed to obtain new knowledge. This new information may help people in the future. You may not receive any direct benefit from being in the research study. There also may be risks to being in research studies.
Details about this study are discussed below. It is important that you understand this information so that you can make an informed choice about being in this research study. You should ask the researchers named above, or staff members who may assist them, any questions you have about this study at any time.
What is the purpose of this study?
The purpose of this research study is to learn about what age doctors should ask young people like you sexual orientation and gender identity questions. We also hope to learn how to ask you these questions and what words to use. We want to make a safe environment where you feel comfortable talking to your doctor about these topics.
You are being asked to be in the study because you are a patient who attends either UNC Endocrine's Pediatric and Adolescent Gender Clinic or UNC Children’s Primary Care Clinic.
Are there any reasons you should not be in this study?
Your child should not be in this study if they are younger than 12 years old or if they are older than 18 years of age
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How many people will take part in this study?
There will be no more 100 people that will complete this survey for the study.
How long will your part in this study last?
We anticipate that it will take you up to 10 minutes to complete. There is no follow up associated with this survey.
What will happen if you take part in the study?
This study is a paper and pencil survey completed by you after being approached by the leader of the study (P.I). This survey and its responses will not be able to identify you by name. The P.I will come into your exam room while you are waiting to see your doctor. The P.I will introduce herself as a medical student and explain the study to you. If you want to be in the study, the P.I will get your verbal agreement to participate in the study after reviewing this assent form with you and a consent form with your parents. She will then give you the paper survey for you to complete independently. You may stop the survey at any time and/or only answer questions that