Cognitive interviewing consent/assent

Attachment F.1: Respondent Information and Consent/Assent Form – Cognitive Interviewing

Form Approved

OMB No: 0920-xxxx
Exp. Date: xx-xx-xxxx

Public Reporting burden of this collection of information is estimated at 5 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Reports Clearance Officer, 1600 Clifton Road NW, MS D-74, Atlanta, GA 30333; Attn: PRA (0920-xxxx).

Part A: Initial Information

THIS INFORMATION FORM WILL BE READ TO THE RESPONDENT

Hello, my name is ______________. I am a survey interviewer from NORC at the University of Chicago for a research study supported by the [Baltimore City/Garrett County] Health Department in partnership with the U.S. Centers for Disease Control and Prevention. We are conducting interviews with young people to improve the way information is collected in surveys. (INTERVIEWER: IF THE RESPONDENT SAT IN DURING THE PARENT/GUARDIAN OR HOH CONSENT (FORM B OR FORM C) THEN THERE IS NO NEED TO REPEAT THIS INFORMATION AND YOU CAN SKIP TO THE NEXT PARAGRAPH)

We are only interviewing youth in your area who are between 13 and 24 years old. We are doing this interview with you to help us improve the way we ask young people about their health, educational, and life experiences. This study is intended to suggest ways to improve the procedures the CDC uses to collect survey data.

I want to assure you that we do not plan to share your information or your answers with anyone. All of the answers will be kept strictly confidential, and your name and address will not be connected with your survey responses. You have the right to stop the interview at any time, or to skip any questions that you don’t want to answer. There are no ‘Right’ or ‘Wrong’ answers. Your participation is completely voluntary, but your experiences could be very helpful to understand how to improve the way we collect information in surveys. As a token of appreciation for your time, you will receive a $50 gift card after completing the interview.

Do you have any questions about what will happen to the information that you share? Y/N

I HAVE CHECKED WITH THE RESPONDENT AND SHE UNDERSTANDS THAT HER ANSWERS ARE CONFIDENTIAL. INTERVIEWER INITIALS______

The interview takes about 60 minutes to complete.

Do you have any other questions?

Would it be alright for me to tell you more about the survey?

NOTE WHETHER THE RESPONDENT AGREES TO DISCUSS THE SURVEY FURTHER:

Does not agree to DISCUSS Survey FURTHER. (THANK RESPONDENT FOR THEIR TIME AND END)

agrees to DISCUSS Survey FURTHER.

It is very important that we find a place to talk where others cannot hear our conversation. This is common practice in surveys to protect your information and provides you with a level of comfort while you answer my questions. It also ensures that you have the ability to ask me any questions that you may have.

Is this a good place to hold the interview or is there somewhere else that you would like to go?

Name of Interviewer Obtaining Agreement to Provide Additional Information:

_________________________________

Date:___________________

PART B: ASSENT/CONSENT

THIS INFORMATION WILL BE READ TO THE RESPONDENT

Thank you for agreeing to learn more about the survey. There are a few things you should know before agreeing to participate:

• You get to decide if you want to participate and whatever you decide is OK. It is also OK to say ‘Yes’, start the survey, and change your mind later. You have the right to stop the survey at any time or decline to respond to any questions you do not want to answer. The survey will take about 60 minutes.

• We are doing this study to learn how to improve the ways we collect information using surveys. The survey asks a lot of different types of questions. I will not ask you to answer the questions – what we want to know is how well you think people your age would understand the questions. What do you think the question is asking? Are there any words, terms, or phrases that are confusing to you?

• The information you provide is confidential. Your survey responses will never be connected to your name or any other personal information.

• During this research you may be audio and/or videotaped, or you may be observed. The recording allows us to more carefully study and improve the questions. If you agree to have the interview recorded, you may still ask to stop the recording at any time, and we will turn it off. If you decide to stop recording, we will ask your consent to retain the portion already recorded. When the interview is finished, you may [watch/listen to] the recording.

• If you agree to record the interview, we will keep it in a locked room either in a secure storage cabinet or on a password-secured computer that is not connected to the internet. Only researchers from NORC and CDC working on the project will be allowed to [watch/listen to] the recording in a secured room. When in use all recordings will be in the safe keeping of a staff person from NORC.

You might be wondering whether bad things could happen to you or your family if you take this survey.

The chance that bad things would happen as a result of taking this survey is really low. As I said, some of the questions are sensitive and responding to them may be difficult or uncomfortable, but you can choose not to respond to certain questions or to end your participation at any time. And remember, we are not asking you to answer the questions but rather to tell us whether you understand the questions.

You might also be wondering if good things could happen to you or your family if you participate.

There are no direct benefits for participating. However, as a thank you and in appreciation of your time, you will receive a $50 gift card. You may also benefit by learning more about different programs available for young people in your area.

There are a few more things I need to tell you due to the content of the survey and the responses you may provide.

• The only people who know the questions asked during the survey are the young people selected to take the survey and the people who work with me on the study. No one else, including the other people in your home or community, knows the exact questions on the survey so you can feel safe in responding honestly.

• Your participation is completely voluntary. You may decline to answer any questions you wish and you are free to take a break or end the survey at any time. If you do end the survey early or do not answer certain questions you will still receive the $50 gift card.

• At the end of the survey, I will offer to connect you with the project’s social worker. You will get to decide if you want to be connected with her. I will never give her any of your information without your permission. [IF 13-15 YEARS OLD] and permission from your parent or guardian.

• Some questions may be upsetting, difficult, or uncomfortable, so you will also have the option of being connected to the social worker at any time during the survey.

• At the end of the survey, you will also receive the Youth Resources Handout and QR code. It has contact information for organizations that you can use if you want to talk about any feelings or emotions you experienced. It also contains information on a range of free programs and services that you may find helpful.

• You should also be aware that a Certificate of Confidentiality has been obtained from the Federal Government for this study to further help ensure your privacy. This Certificate means that the researchers cannot be forced to disclose information that may identify you, even by a court subpoena, in any federal, state, or local civil, criminal, administrative, legislative, or other proceedings. But, if you request disclosure, we can release the information. The Certificate of Confidentiality does not prevent the researchers from disclosing, without your consent, information that would identify you as a respondent in the research project if during the interview you reveal intent to hurt yourself or someone else.

• Also, if you voluntarily share information with me directly at any point during our time together that makes it known that you are in immediate danger OR if you tell me that you may hurt yourself or someone else, OR if you share that someone is hurting you now or in the past, I will have to tell a social worker so you can get help and may have to file a report.

Do you have any questions at this time?

You have the right to contact people working on this project with any questions, complaints or concerns about the survey or your participation, either:

• [NAME] from the Baltimore City/Garrett County Health Department at XXX.XXX.XXXX, or

• [NAME] at NORC at the University of Chicago at XXX.XXX.XXXX.

[HAND RESPONDENT CARD] Here is this contact information if you would like to call at any point. Please know that if you decide at any point after completing this survey that you would like your data destroyed and removed from analysis, we will honor that request.

I am going to read a final statement. When I am done, please respond either “Yes” if you agree to participate or “No” if you do not agree to participate.

You understand the purpose of the survey, that participating is your choice and no one will be upset if you do not want to participate or if you change your mind, and that your responses entered in the tablet will be confidential. Do you agree to participate in the survey?

YES, THE RESPONDENT AGREES TO PARTICIPATE IN THE SURVEY

NO, THE RESPONDENT DOES NOT AGREE TO PARTICIPATE IN THE SURVEY

IF YES [DO NOT READ TO RESPONDENT]: Interviewer Verbal Consent Certification

In completing the certification information below and conducting the survey, you verify that you have read the informed consent to the respondent, answered any questions to the best of your ability and in-line with your training, and that all project protocols will be followed.

Interviewer Name _____________________________________________

Interviewer ID _____________________________________________

Date _____________________________________________

IF NO: Thank you for taking the time to hear more about the survey. I will not contact you again regarding the survey or for any other reason. You are welcome to have a Youth Resource Handout, would you like me to leave you one or to scan the QR code?