Appendix A: Consent form for parents of youth with IDD

OMB Number: 0970-0531 [Insert logo here]

Expiration Date: XX/XX/XXXX

INFORMATION SHEET AND CONSENT FORM FOR VOLUNTARY PARTICIPATION

Parent or Guardian of Youth Participants

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 from the Digital Citizenship curriculum. Digital Citizenship is an Internet safety curriculum developed by Common Sense Education and Project Zero at the Harvard Graduate School of Education. The two lessons being tested were adapted for youth with intellectual and developmental disabilities. The lessons help youth navigate online interactions and build healthy and rewarding friendships both online and off. [IMPLEMENTING ORGANIZATION NAME] is taking part in the study. A teacher at [IMPLEMENTING ORGANIZATION NAME] will teach the lessons during your child’s class.

WHAT IS THE STUDY ASKING ME AND MY CHILD TO DO?

We are asking permission for your child to be in a 1-hour focus group after your child’s class receives the lessons. A focus group is a discussion that Mathematica staff will guide with youth in the class. During the focus group, your child and the other youth can share their thoughts about the lessons and how much they liked them. They can also share their ideas for how the lessons could be better. We will not ask your child about their own behavior.

Your child’s point of view is very important for this work. If for some reason we cannot do a focus group at [IMPLEMENTING ORGANIZATION NAME], we will ask your child to do a short interview. The interview questions will be the same as the focus group questions.

HOW WILL THE STUDY KEEP MY CHILD’S INFORMATION PRIVATE?

If you choose to let your child take part, we will group your child’s answers to the questions with the answers from other youth. Your child’s name will not be attached to the answers they give. We will use only first names during the discussion. Also, Mathematica staff will ask youth in the focus group to keep the discussion private, but we can’t guarantee that they will do so.

We will keep everything your child tells us private unless it’s required by law. That means no one outside of the study team will see your child’s answers. With your child’s permission, we will audio-record the discussion. Any child who does not agree to audio-record the discussion can still participate without being recorded. The recording will be destroyed after we have checked our written notes. We might share recorded answers with outside partners to transcribe notes, but no names will be attached.

ARE THERE ANY BENEFITS TO BEING IN THIS STUDY?

While there is no direct benefit to you or your child, you will be learning about Internet safety helping with the development of lessons about Internet safety for youth with intellectual and developmental disabilities.

ARE THERE ANY RISKS TO BEING IN THIS STUDY?

The only risk to your child is that they might be uncomfortable answering some questions. If that happens, your child does not have to answer any questions that they do not want to answer. Your child may also stop participating in the discussion at any point. There are no right or wrong answers to our questions.

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

You and your child have a choice whether to be part of this discussion. There are no penalties or consequences for not taking part. Your child can also choose not to answer our questions or may stop taking part at any time. Your child can still receive the Internet safety lessons even if they choose not to take part in the study.

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]. The focus group or interview 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 negatively affected your child, 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 whether you will allow your child to take part by completing and electronically signing the consent form below. Return it to [Katie Adamek at Mathematica/Name of contact at implementing organization].

Sincerely,

Jean Knab, Ph.D.

Project Director

Mathematica

Parent or Guardian Study Consent Form

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

1. I have read the information sheet describing the study. By electronically signing this form, I am:

□ giving my permission

□ not giving permission

for my child, ___________________________, to participate in the focus group or interview. [Type Name]

2. If giving permission for my child to take part in the study, I understand that my child will be asked their thoughts about the Internet safety lessons and how these lessons could be better. I agree to the study team collecting this information. I confirm that my child is able to understand and answer these types of questions.

□ Yes

□ No

3. I understand that parents and youth can choose to participate or not. I also understand my child may stop participating at any time, for any reason. There is no penalty for choosing not to participate. I understand that the study team will keep all my child’s information private and use it only for the purposes of the study. I also understand the study team will tell other youth in the focus group not to talk about the discussion outside the group, but there is a chance another youth might reveal to others information discussed in the group. I understand that if my child agrees to it, you will make an audio recording of the discussion. I understand the recording will be destroyed after the study team has checked its written notes.

If I have questions about my child’s rights as a research volunteer, I can call the HML IRB toll-free at 1-202-246-8504. I confirm that my child can understand these statements and will be able to provide or refuse their own consent when asked:

□ Yes

□ No

Parent or Guardian Electronic Signature: ________________________________ Date: ___________

Child’s Name: ___________________________________________

Child’s Date of Birth: _____ / ______ / _____ Mobile Phone: ________________________ Month Day Year

May we text you at this number to confirm or remind you of the date and time of the focus group or interview?

□ Yes □ No

Email address: _____________________________________________

We will not share your contact information with anyone outside of the study team. We will only use it to confirm the schedule for the focus group or interview.

Approved by [IRB] on XX-XX-XXXX

[IRB] Version 1.0