Appendix B: Consent and Assent Forms (English)

Appendix B

Consent and Assent Forms

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Appendix B.1.

Parent consent form

Youth virtual cognitive interviews or in-person focus groups

Participants: Recruited through panel for cognitive interviews; recruited through ACF programs for focus groups

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Voluntary Parent/Guardian Consent for Youth to Participate in a [Virtual Cognitive Interview/Focus Group]
to Test Survey Questions

Study description and purpose

We invite your child to participate in a [virtual cognitive group interview/focus group discussion] to review survey questions and provide feedback to help us improve them. The questions ask about sexual orientation and gender identity. Your child will not be asked to disclose their sexual orientation or gender identity to the group. The focus of the group discussion is to learn how well these survey questions represent the identities of youth aged 12-19. We want to know if the questions are clear and easy for youth to understand, and if there are better ways to phrase the questions.

Mathematica is conducting this study for the Administration for Children and Families (ACF), an agency within the U.S. Department of Health and Human Services that supports the health and well-being of people, including youth.

What will my child be asked to do?

• If you give permission and your child also agrees to participate, they will be asked to join a 60-minute [cognitive group interview/focus group discussion] with other youth their age. The group will be held [virtually/in-person at [LOCATION]] on [DATE] at [TIME].

• [VIRTUAL ONLY: Your child will be asked to complete a short screener questionnaire to help us determine whether they qualify to participate in the study and help us place them in a group for discussion.]

• In the session, youth will review a small number of survey questions on sexual orientation and gender identity. We are not interested in your child’s answers to the questions; instead, they will be asked to provide feedback on the questions, including how easy or difficult they are to understand, and how the questions can be improved.

What are the risks and benefits to participating?

• Some people might feel uncomfortable or embarrassed talking about some of the topics in the survey questions. However, your child does not need to answer any questions or talk about any topics that make them uncomfortable.

• There is a chance others might share information from the discussion with people who did not participate. We ask all participants to respect the privacy of others in the group by not discussing specifics with others outside the group, but we cannot guarantee that will happen.

• If you give permission and your child chooses to participate, they will receive a $75 honorarium as a thank you for helping us improve the surveys.

How will my child’s privacy be protected?

• Your child’s name will not be included in any reports and none of the feedback they provide will be linked to them. During the group discussion, your child can provide a fake name if they so choose.

• [VIRTUAL ONLY: The information your child provides as part of the screener questionnaire will be provided to Mathematica in a de-identified form, without their full name or contact information attached, and will be destroyed at the end of the project.]

• If all participants agree, the discussion will be recorded so that the study team can review the recording later to make sure their notes are accurate. No one will have access to the recording except for the study team. The recording and all notes associated with the discussion will be stored in a secure location and destroyed at the end of the study. If anyone participating in the group does not want to be recorded, we will not record the session.

• All information will be kept private to the extent allowed by law. We are required by law to report your child’s name to authorities if your child says something that suggests they are likely to harm themselves, harm another person, or that someone is likely to harm them.

How will the information from the discussion be used?

The study team will write a report for ACF that summarizes the findings across all groups. The feedback your child provides will be combined with feedback from other youth participating in the discussions and will be used to improve the questions for future surveys with youth. Information about the pretesting activities and how they led ACF to choose which questions about sexual orientation and gender identity they will include in future studies may be published, but your child’s name and their individual responses will never be shared.

Who can I contact for more information?

For more information about the study, please contact Melissa Thomas, Mathematica’s Survey Director at mthomas@mathematica-mpr.com or by telephone at (609) 275-2231. For questions about your child’s rights as a participant in the study, please contact Health Media Lab Institutional Review Board, who has approved this work, at (202) 246-8504.

Agreement to participate

• By checking the box and signing your name below, you agree that your child may participate in the [group interview/focus group discussion] to gather feedback on the survey questions.

• If you agree, then your child will decide on their own whether to participate. They will sign their own agreement form.

• Your signature below indicates that your questions have been answered and that you have read and understood the information provided above.

• Your child’s participation is entirely voluntary. Even if you give permission for them to participate, you or your child can choose to stop participating at any time. There are no consequences to you or your child if you choose not to participate.

Please check the box and fill out the information below if you give permission for your child to participate:

☒ I accept the terms described above and give permission for my child to participate in the focus group session.

___________________________________________________________________________

Print Child’s Name

____________________________________ _______________________

Parent/Guardian Signature Date

Appendix B.2.

Youth assent form for youth under 18/Consent form for youth 18 and older

Virtual cognitive interviews and In-person focus groups

Participants: Recruited through panel for cognitive interviews; recruited through programs for focus groups

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Voluntary Youth Participation Agreement Form for a [Virtual Cognitive Group Interview/Focus Group] to

Test Survey Items

Study description and purpose

We invite you to participate in a [virtual cognitive group interview/small group discussion] to test some survey questions and provide feedback to help us improve them. The questions ask about sexual orientation and gender identity. We will not ask you to tell others in your group about your personal sexual orientation or gender identity. We want to learn how well these survey questions represent the identities of youth between the ages of 12 and 19. We want to know if the questions are clear and easy for you to understand, and if you think there are better ways to phrase the questions. [IF UNDER 18: Your parent has provided permission for you to participate, but you can now decide for yourself.] If you agree to participate, you will join a 60-minute, [virtual group interview/in-person focus group].

Mathematica is conducting this study for the Administration for Children and Families (ACF), an agency in the federal government within the U.S. Department of Health and Human Services that supports the health and well-being of people, including youth.

What will I be asked to do?

• If you agree to participate, you will be asked to join a 60-minute group session with other youth your age.

• The discussion will be led by a researcher from Mathematica. The group will be held [in-person at [LOCATION]/virtually] on [DATE] at [TIME].

• [VIRTUAL ONLY: You will be asked to complete a short screener questionnaire to help us determine whether you qualify to participate in the study and help us place you in a group for discussion.]In the discussion, you will be asked to review a small number of survey questions on sexual orientation and gender identity. We are not interested in your personal answers to the survey questions. Instead, we want your feedback on the questions, including how easy or difficult they are to understand, and how the questions can be improved.

• The feedback you provide will be combined with feedback from other youth participating in discussions and will be used to make the survey questions better. Your name or feedback will not be disclosed or used, in identifiable form.

What are the risks and benefits to participating?

• Some people might feel uncomfortable or embarrassed talking about some of the topics in the survey questions. You do not need to answer any questions or talk about any topics that make you uncomfortable.

• The activity is a group discussion. There is a chance others might share information from the discussion with people who did not participate. We ask all participants to respect the privacy of others in the group by not discussing specifics with others outside the group, but we cannot guarantee that will happen.

• If you choose to participate, you will receive a $75 honorarium

• as a thank you for helping us improve the surveys.

Do I have to participate?

No. You can choose to participate or not participate in this research study. Even if you decided to participate now, you can change your mind later and decide to not participate without any consequences. You may also choose whether or not to answer the questions during the group discussion.

How will my privacy be protected?

• Your name will not be included in any reports and none of the feedback you provide will be linked to you. If you’d like, during the group discussion, you can give us a fake name instead of your real name. However, you must sign your real name on this form.

• [VIRTUAL ONLY: The information you provide as part of the screener questionnaire will be provided to Mathematica in a de-identified form, without your full name or contact information attached, and will be destroyed at the end of the project.]

• We will ask to record the session so that the study team can review the recording later to help us remember all of your thoughts and ideas when we make improvements to the survey questions. No one will hear the recording except for the study team. We will store the recording in a secure location and our study team will destroy it at the end of the project. If anyone participating in your group does not want to be recorded, we will not record the discussion.

• We will keep any notes from our conversation in a secure location for the study team to use, and we will destroy the notes at the end of the project.

• Nothing will be shared with your parents or anyone outside of the study team. However, we are required by law to report to authorities if you say something that suggests you are likely to harm yourself, harm another person, or that someone is likely to harm you.

How will the information from the discussion be used?

The study team will write a report for ACF that summarizes the findings across all group discussions. The feedback you provide will be combined with feedback from other youth and will be used to improve the questions for future surveys with youth. Information about the pretesting activities and how they led ACF to choose which questions about sexual orientation and gender identity they will include in future studies may be published, but your name and individual responses will never be shared.

Who can provide more information about this study?

For more information about the study, please contact Melissa Thomas, Mathematica’s Survey Director at mthomas@mathematica-mpr.com or by telephone at (609) 275-2231. For questions about your rights as a participant in the study, please contact Health Media Lab Institutional Review Board, who has approved this work, at (202) 246-8504.

Agreement to participate

• By signing below, you agree to participate in the [virtual cognitive group interview/ focus group] to give feedback about the survey questions.

• Your signature below means that your questions have been answered, and that you have read and understood the information provided above.

Please check the box and fill out the information below if you agree to participate:

☐I accept the terms described above and will voluntarily participate in the [virtual cognitive group interview/ focus group discussion].

________________________________________________________

Print your name

____________________________________ _______________________

Your Signature Date