Appendix B: Consent form for youth with IDD over 18

OMB Number: 0970-0531 [Insert logo here]

Expiration Date: XX/XX/XXXX

INFORMATION SHEET AND CONSENT FORM FOR VOLUNTARY PARTICIPATION

Youth 18 or Older

Sponsored by the U.S. Department of Health and Human Services

INTRODUCTION

The Administration for Children and Families (ACF) is part of the U.S. Department of Health and Human Services. ACF is working with Mathematica, an independent research organization, to test two lessons on Internet safety. The lessons come from a curriculum called Digital Citizenship. Digital Citizenship is an Internet safety curriculum that was developed by Common Sense Education and Project Zero at the Harvard Graduate School of Education. The two lessons were adapted for youth with intellectual and developmental disabilities. The adapted lessons are titled “Chatting and Red Flags” and “Rewarding Relationships.” They aim to help youth with online interactions and healthy friendships both online and off. Your school is helping to test these lessons.

WHAT IS THE STUDY ASKING ME TO DO?

We are asking you to be in a 1-hour focus group after your teacher does the lessons with your class. A focus group is a discussion that Mathematica will lead with youth in the class. During the focus group, you and other youth will be able to share your thoughts about the lessons and how much you like them. You can also share ideas about how the lessons could be better. We will not ask you about your own behavior.

Your thoughts are very important for this work. If for some reason we cannot do a focus group at your school, we will ask you to do a short interview. The interview questions will be the same as the focus group questions.

HOW WILL THE STUDY KEEP MY INFORMATION PRIVATE?

If you choose to take part in the study, we will group your answers to the questions with the answers from other youth. Your name will not be used with the answers you give. We will use only first names during the discussion. Also, Mathematica staff will ask youth in the focus group to not share what is said with people outside of the group, but we can’t guarantee that they will do so.

We will keep everything you tell us private unless it’s required by law. That means no one outside of the study team will see your answers. We are also asking you if we can audio-record the discussion. We will destroy the recording after we write up our notes from it. Anyone who does not agree to be recorded can still participate in the discussion without being recorded. We might share recorded answers with outside partners so they can write up notes from the recording. These notes will not have any names on them.

ARE THERE ANY BENEFITS TO BEING IN THIS STUDY?

There is no direct benefit to you, but you will learn about Internet safety and help make these lessons better for other youth.

ARE THERE ANY RISKS TO BEING IN THIS STUDY?

The only risk is that you might not be comfortable answering some questions. If that happens, you do not have to answer questions. You can also stop being part of the discussion at any time. There are no right or wrong answers to our questions.

DO I HAVE A CHOICE ABOUT BEING PART OF THIS STUDY?

You can choose whether to be part of this discussion. The choice is up to you. You will not get in trouble for choosing not to be in the study. You may also start then change your mind and stop being part of the discussion.

WHEN IS THE STUDY TAKING PLACE? HOW LONG WILL IT LAST?

The focus group or interview will take place on [DATE] at [TIME] at [LOCATION]. It will last no more than 1 hour.

WHAT IF I HAVE QUESTIONS OR COMMENTS ABOUT THIS STUDY?

If you have questions, concerns, or complaints about the study, please call Katie Adamek at 1-617-583-1940.

If you have questions about your rights as a research volunteer, if you think the research has affected you in a negative way, or if you have other questions, concerns, or complaints, contact HML IRB at 1-202-246-8504.

WHAT DO I DO NEXT?

Please let us know if you want to be in the discussion by filling out and electronically signing the attached form.

Sincerely,

Jean Knab, Ph.D.

Project Director

Mathematica

Youth 18 or Older Study Consent Form

Sponsored by the U.S. Department of Health and Human Services

1. I have read the information sheet describing the study. I understand that I can choose to be part of this study or not. I also know that I may stop being part of it at any time. I will not get in trouble for choosing not to be part of it. By signing this form, I am:

□ agreeing

□ not agreeing

to participate in the study.

2. I understand I will be asked about my thoughts on the Internet safety lessons and how they could be better. I understand I do not have to answer any questions that make me uncomfortable. I agree to the study team collecting this information.

□ Yes

□ No

3. I understand the study team will keep all information private and use it only for this study. I also understand the study team will tell all the youth to not tell others about what we talk about, but they might do it anyway. I understand that this discussion will be audio-recorded if I and the other youth agree to it. I understand that the recording will be destroyed after the study team has written up its notes. If I have questions about my rights as a research volunteer, I can call the HML IRB toll-free at 1-202-246-8504.

□ Yes

□ No

Signature: ____________________________ ____ Date: _______________

Name: ___________________________________________

Approved by [IRB] on XX-XX-XXXX

[IRB] Version 1.0