Focus Group about Women's Perception of Down Syndrome -

ATTACHMENT 4

SCREENING INSTRUMENT

Hello, my name is _______________ and I’m from (name of company). I am calling on behalf of RTI International, a non-profit research organization, and the Centers for Disease Control and Prevention (or CDC).

I am not selling or promoting any product. I am calling to invite women in your area to take part in a focus group examining women’s knowledge and thoughts about Down syndrome. We are inviting groups of women in to discuss their views with them and with each other. If you qualify for this project, and participate in our focus group, you will receive a $75 incentive for your participation.

Your opinions are important to us and will help to contribute to the CDC’s efforts to develop educational materials about Down syndrome.

To see if you are eligible for this study, I need to ask you some personal questions. It is your choice to answer these questions. Your answers will be kept anonymous. You can refuse to answer any question or stop at any time.

If you are not eligible and/or choose not to be part of the study, all responses you give to me today will be destroyed and you will not be contacted again.

My questions will only take a few minutes. May I ask you the questions now?

Yes..................1 [CONTINUE]

No...................2 [END]

Procedures for Recording and Limiting Information:

• Only record information for the questions in the screener

• If an informant reveals additional personal information, thank them for being helpful, but guide them back to the questions-“That is interesting to learn, but can I now ask you about. . .”

1. How old are you?

_______________

Under 21 years old	1	[NOT ELIGIBLE - THANK & END]
21 – 34	2	CONTINUE
35 – 45	3
46 or older	4	[NOT ELIGIBLE - THANK & END]
Refused	5	[NOT ELIGIBLE – SKIP TO NOT ELIGIBLE SCRIPT]
	6

2. Are you Hispanic or Latina?

Yes	1	Continue
No	2	Continue

3. What is the category that best describes your racial/ethnic background?

American Indian or Alaska Native	1	[Not eligible – SKIP TO NOT ELIGIBLE SCRIPT]
Asian/Asian American	2
Native Hawaiian/ Other Pacific Islander	3
African American or Black	4	Continue
White	5	Continue
Other	6	[Not eligible – SKIP TO NOT ELIGIBLE SCRIPT]

4. What language would you prefer for a focus group?

English	1	Continue
Spanish	2	Continue

5. Have you ever been pregnant?

Yes	1	Continue
No	2	Continue

If YES – how many times have you been pregnant? _____ Times

6. Have you given birth to any children?

Yes	1	Continue
No	2	Continue

If YES – how many children have you given birth to? _____ Children

What is/are the age(s) of your child(ren)? ______________________

If at least one child is age 3 or below……………CONTINUE

If all childrens’ ages are older than 3………… Not eligible – SKIP TO

NOT ELIGIBLE SCRIPT

7. Do you want to have children or more children in the future?

Yes	1	Continue
No	2	[Not eligible – SKIP TO NOT ELIGIBLE SCRIPT]

8. Do you have an immediate family member (mother, father, sister, brother) with Down syndrome?

Yes	1	[Not eligible – SKIP TO NOT ELIGIBLE SCRIPT]
No	2	Continue

9. Do you work… [READ LIST.]

In clinical genetics?	1	[Not eligible – SKIP TO NOT ELIGIBLE SCRIPT]
In special education?	2
None	4

[IF INELIGIBLE – CONTINUE WITH CLOSING FOR INELIGIBLES]

[IF ELIGIBLE - SKIP TO INVITATION]

Closing for Ineligible Participants:

Thank you for answering all of my questions. Unfortunately, you are not eligible to participate in this project. There are many possible reasons why people may not be eligible. These reasons were decided earlier by the project team. We value your interest in the focus groups. Thank you for being willing to help us.

Invitation:

As I mentioned, we will be talking to women about their views of Down syndrome. We would like to invite you to take part in a group discussion with about five other women.

The group discussion will last about two hours. You will not be asked to buy anything. You will be asked your first name only, but can choose to use a made-up name if you prefer. You will be contacted a day or two before the discussion as a reminder. We will not share your information with anyone outside the study, and your name will not appear in any report.

We’re simply interested in your opinions. But if you begin to feel uncomfortable at any time, you can refuse to answer questions or leave the discussion. Your participation in this study poses no physical risks to you.

If you have questions about your rights as a participant, call the RTI project director at 1-800-334-8571. Leave a message with your name and phone number, and someone will call you back as soon as possible.

For participating in the group, you will be paid $75 for your time and effort and to help repay you for your travel expenses. Will you be able to join us?

Yes	1	[CONTINUE]
No (Refuse to participate)	2	[THANK AND END]

[READ THE FOLLOWING STATEMENTS]

“We will be audio-recording the group. In order to participate in the group, you must agree to be audio-recorded. As I said, if you choose to attend, whatever you say will be kept private. In the group discussions, we will ask all other group members to keep what is said private. We will never link your name with any comment you make in any report that we write.”

“If you need to wear glasses either for reading or watching TV, please bring them with you to the group.”

“Also, we need to let you know that there will not be any childcare provided at the facility, so please make the appropriate childcare arrangements if you have children.”