Form 2.1 Survey

ATTACHMENT 6 COGNITIVE INTERVIEW GUIDE OMB NUMBER: 0925-XXXX

EXPIRATION DATE: XX/XX/XXXX

PARTICIPANT ID __ __ __ __ BEGIN TIME:

DATE____________________ END TIME:

COGNITIVE INTERVIEWING GUIDE

Interviewer Instructions: After consent has been double signed. Turn on both recorders and read the following statement:

This begins the interview with participant __ __ __ __ on ________________ at __ __: __ __ AM PM at

ID CODE DATE TIME (circle one)

________. Interviewer is ________.

SITE NAME

INTRODUCTORY STATEMENT

Thank you for agreeing to participate in this interview. During the interview we are going to ask you to reflect on some survey questions we are hoping to include in a larger national study we are completing. Your thoughts and answers will allow us to determine if the survey questions are clearly understandable and meaningful across cultural groups. We also want to determine the most comfortable way to collect this information from study participants like you. This is an important process that ensures that the survey questions mean the same thing to the participants as they do the researchers. Please do not worry about giving a right or wrong answer. We are most interested in your honest opinion.

CONTENT OF THE INTERVIEW

There are several parts to this interview. First, we will ask you to take a short test about nutrition and food labels. The goal of this test is to see how well people understand health information. This test is not developed to determine or measure your ability, but to get your feedback on this test. In the second part of this interview, we will ask you about your experiences regarding unfair treatment and discrimination that you have experienced. In the third part of this interview, we would like to ask you to talk about stressful situations you may have experienced. And finally, we will ask you some general questions about your demographic background.

ESTIMATED TIME OF THE INTERVIEW AND INCENTIVE

This interview will take about 60 minutes of your time. After the interview, you will be provided with $25 monetary incentive for your effort.

RECORDED INTERVIEWS AND PRIVACY

As it says in the consent form we just went over, today’s conversation is going to be recorded. This is just to insure we capture everything that you have to say because it is all important and I as the interviewer might have trouble remembering it all at the end.

To protect your privacy we ask that you do not use personal names whenever possible. I as the interviewer will never say your full name on the tape.

CONFIDENTIALITY

Your answers will be used to improve our research. Your information will remain confidential, which means that your name and all other personal information will remain anonymous.

I. Health Literacy Skills

Introduction: In this section of the interview, we will talk about your thoughts on a brief test you will take called the Newest Vital Sign. Let’s take the next few minutes for you to complete this test.

[ADMINISTER THE NEWEST VITAL SIGN AT THIS TIME. SEE ATTACHMENT 4 [Attach 4 The Newest Vital Sign].

1. If you eat the entire container, how many calories will you eat?

2. If you are allowed to eat 60 grams of carbohydrates as a snack, how much ice cream could you have?

3. Your doctor advises you to reduce the amount of saturated fat in your diet. You usually have 42 g of saturated fat each day, which includes one serving of ice cream. If you stop eating ice cream, how many grams of saturated fat would you be consuming each day?

4. If you usually eat 2500 calories in a day, what percentage of your daily value of calories will you be eating if you eat one serving?

PRETEND THAT YOU ARE ALLERGIC TO THE FOLLOWING SUBSTANCES:

PENICILLIN, PEANUTS, LATEX GLOVES, AND BEE STINGS

5. Is it safe for you to eat this ice cream?

6. If your answer to Question 5 is “No,” please explain why you chose

Thank you for completing the test.

1. Clarity / Comfort /Anxiety with the Test

7. How difficult did you find this test?

   1. Why?

8. Is there something I could have told you about this test before you took it that would have made it easier?

   1. What could/should I have said?

   2. How could I have made the directions for this test easier to understand?

9. How did this test make you feel?

   1. Why?

2. Prior Experience with Food Labels

10. Before today, have you ever read food labels like this one? [VISUAL AID: NON-NVS FOOD LABEL]

• Yes  SKIP TO QUESTION 11

 No

a. (IF NO) How difficult or stressful did you feel about reading a food label for the first time?

b. Is there anything that I should have told you about this food label before I gave you the test that would have made this test easier to understand?

11. How often do you look at food labels when shopping?

 Never

 Rarely

 Sometimes

 Often

 Always

1. Why?

3. Face /Content Validity of the NVS: Reading, Math, Health Literacy Skills

12. Tell me what you were seeing and thinking when you were taking the test about food labels.

13. In your own words, what do you think this group of questions was testing?

    1. What are the questions asking you to do?

    2. How important is your ability to [INSERT RESPONDENT’S ANSWER FROM PREVIOUS QUESTION, #13] in keeping you or your family healthy?

 Extremely important

 Somewhat important

 Not at all important

3. Why?

1. How are your reading skills in English: would you say excellent, good, fair, or poor?

 Excellent

 Good

 Fair

 Poor

15. How well does this test measure your reading skills in English?

    1. Why?

16. How are your math skills?

    1. How well does this test measure your math skills?

    2. Why?

17. There are several methods that we can use to administer this “Newest Vital Sign” test. Which method do you think you would prefer?

 Face-to-face interview-- like we are doing now

 Paper and pencil form that you complete by yourself

 Computer survey that you complete by yourself

 A computer survey where you wear headphones and hear questions read to you through headphones.

1. Why?

Many people find it difficult to understand written health information.

Think about the last time you read any written health information to help take care of your child/children. Examples of written health information includes handouts or brochures from the doctor’s office, instructions for dosing liquid medication, health insurance paperwork, medical test results and anything else you may need to read in order to get medical care for yourself or your child.

18. What was that health information about?

    1. How well did you understand the information?

    2. In what way did you use that information?

    3. Was it helpful?

    4. Why was it helpful/not helpful?

    5. How could it have been more helpful or understandable?

Think about the most confusing health information you’ve ever had to read to help take care of your child / children.

19. What was that health information about?

    1. How well did you understand the information?

    2. In what way did you use that information?

    3. Was it helpful?

    4. Why was it helpful/not helpful?

    5. How could it have been more helpful or understandable?

20. How confident are you filling out medical forms by yourself?

 Extremely sure

 Quite a bit sure

 Somewhat sure

 A little bit sure

 Not at all sure

1. Why?

1. How often do you need to have someone help you when you read instructions, pamphlets or other written material from your doctor or pharmacy?

 Never

 Rarely

 Sometimes

 Often

 Always

1. Why?

1. What other types of written medical information do you find it most difficult to understand and to use?

   1. Why?

2. How important do you think your reading skills are to your ability to get and use information to keep you and your family healthy?

   1. Why?

3. Compared with reading skills, how important do you think your math skills are to your ability to get and use information to keep you and your family healthy?

   1. Why?

II. Discrimination

In this second section, we are going to start our discussion of discrimination by asking you how you typically respond if you feel you or others have been treated unfairly. We will later ask you some questions about your experiences of discrimination in general and some specific questions regarding those experiences of discrimination in the health care setting that you may have had.

[IF RESPONDENT ASKS WHO OTHERS ARE, YOU CAN CLARIFY THAT THESE MAY BE SITUATIONS THAT THEY HAVE OBSERVED]

1. Experiences of Discrimination– Response to Unfair Treatment (a)

1. If you feel you have been treated unfairly, do you usually: [SHOW CARD EOD #1, SOLICIT RESPONSE, THEN START FOLLOW-UP QUESTION 1]

 Accept it as a fact of life

 Try to do something about it

a. Please repeat the previous question in your own words.

2. What did you have to think about in order to answer the first question [QUESTION #1]?

3. Does your response come from a single incident or by taking a look at more than one incident?

a. Please describe in more detail.

4. Do you think people are more likely to accept unfair treatment or do something about it as they get older?

B. Experiences of Discrimination– Response to Unfair Treatment (b)

5. If you have been treated unfairly, do you usually: [SHOW CARD EOD #1A, SOLICIT RESPONSE, THEN START FOLLOW-UP QUESTION 5]

 Talk to other people about it

 Keep it to yourself

1. Tell me more about why you chose this response.

2. Are there other types of responses other than the two mentioned here?

C. Experiences of Discrimination – Situation

6. Have you ever experienced discrimination (been prevented from doing something, or been hassled or made to feel inferior) because of your race, ethnicity or color? [ALLOW RESPONDENT TO ANSWER QUESTION, THEN MOVE TO QUESTION #7, IF PARTICIPANT RESPONDS WITH ANOTHER ‘ISM’ YOU SHOULD REDIRECT TO RACE, ETHNICITY, OR COLOR]

7. Please repeat the previous question in your own words.

8. Have you ever experienced discrimination, been prevented from doing something, or been hassled or made to feel inferior in any of the following situations because of your race, ethnicity, or color? [SHOW CARD EOD #2, SOLICIT RESPONSE, RECORD THE RESPONSE (NO/YES), THEN START FOLLOW-UP QUESTION #9]

At school?	 NO  YES
Getting hired or getting a job?	 NO  YES
At work?	 NO  YES
Getting housing?	 NO  YES
Getting medical care?	 NO  YES
Getting service in a store or restaurant?	 NO  YES
Getting credit, bank loans, or a mortgage?	 NO  YES
On the street or in a public setting?	 NO  YES
From the police or in the courts?	 NO  YES

9. What did you have to think about in order to answer the question? [POTENTIAL FOLLOW-UP: Is there a particular incident that comes to mind? Could you tell me about it?]

10. What does the term “DISCRIMINATION” mean to you?

11. Do you think unfair treatment and discrimination mean the same thing?

4. Experiences of Discrimination – Frequency

Now I will ask you some questions about the number of times you have been in situations where you have been discriminated.[Follow-up with QUESTION 8 ABOVE (a.-i.) TO WHICH THE PARTICIPANT ANSWERED “YES”, ASK]:

12. You mentioned that you had experienced discrimination in (SITUATION FROM QUESTION #8). How many times did this happen? You can answer 1 time, 2 or 3 times or 4 or more times. [SHOW CARD EOD #2, SOLICIT RESPONSE]

a. At school?	 1 time  2 or 3 times  4 or more times
b. Getting hired or getting a job?	 1 time  2 or 3 times  4 or more times
c. At work?	 1 time  2 or 3 times  4 or more times
d. Getting housing?	 1 time  2 or 3 times  4 or more times
e. Getting medical care?	 1 time  2 or 3 times  4 or more times
f. Getting service in a store or restaurant?	 1 time  2 or 3 times  4 or more times
g. Getting credit, bank loans, or a mortgage?	 1 time  2 or 3 times  4 or more times
h. On the street or in a public setting?	 1 time  2 or 3 times  4 or more times
i.  From the police or in the courts?	 1 time  2 or 3 times  4 or more times

1. Do these items [SHOW CARD EOD#2] capture all of the situations that we should be asking about?

2. What are other situations in which people might experience discrimination?

5. Discrimination in Medical Care Setting

[IF PARTICIPANT ANSWERED “YES” TO 8e. - GETTING MEDICAL CARE - GO TO QUESTION 13, OTHERWISE SKIP NEXT SECTION]

13. You mentioned experiencing discrimination when getting medical care – can you describe what happened in more detail? [SKIP ANY OF THE FOLLOW UP QUESTIONS BELOW IF RESPONDENT INCLUDED INFO IN DESCRIPTION]

1. When did the event take place?

2. How did it make you feel – what emotions did you have?

3. What did you do in response to the situation?

4. In general how much stress did this event cause you?

 None

 A Little

 Some

 A lot

 Extreme

5. Do you think that this event has any effect on the way you use the medical care system or the way you interact with doctors/nurses about your own health?

6. Has it affected the way you use medical care system or interact with doctors/nurses in regard to your child’s health?

7. [IF YES], please explain.

8. If you have experienced discrimination in medical care in another situation, please tell me
   about it?

6. Day to Day Unfair Treatment

Now I will ask you some questions about experiences with unfair treatment that you have had in your daily life.

14. In your day-to-day life, how often have any of the following things [ever] happened to you [SHOW CARD EOD #4]?

[AND IF YES], how many times:

 Four or more times

 Two or three times

 Once

 Never

(1) You have been treated with less courtesy than other people	 Never  YES→	 4 or more times  2 or 3 times  1 time
(2) You have been treated with less respect than other people	 Never  YES→	 4 or more times  2 or 3 times  1 time
(3) You have received poorer service than other people at restaurants or stores	 Never  YES→	 4 or more times  2 or 3 times  1 time
(4) You have been treated with less courtesy than other people when getting medical care	 Never  YES→	 4 or more times  2 or 3 times  1 time
(5) You have been treated with less respect than other people when getting medical care	 Never  YES→	 4 or more times  2 or 3 times  1 time
(6) You have received poorer service than other people when getting medical care	 Never  YES→	 4 or more times  2 or 3 times  1 time
(7) People have acted as if they think you are not smart	 Never  YES→	 4 or more times  2 or 3 times  1 time
(8) People have acted as if they are afraid of you	 Never  YES→	 4 or more times  2 or 3 times  1 time
(9) People have acted as if they think you are dishonest	 Never  YES→	 4 or more times  2 or 3 times  1 time
(10) People have acted as if they’re better than you are	 Never  YES→	 4 or more times  2 or 3 times  1 time
(11) You have been called names or insulted	 Never  YES→	 4 or more times  2 or 3 times  1 time
(12) You have been threatened or harassed	 Never  YES→	 4 or more times  2 or 3 times  1 time
(13) You have been followed around in stores	 Never  YES→	 4 or more times  2 or 3 times  1 time

G. Day to Day Unfair Treatment – Reason for Treatment

[RESPONDENTS WHO INDICATED ANY OF THESE EVENTS OCCURRED ASK QUESTION 15---,ONE QUESTION COVERING ALL THE SITUATIONS, IF Q14(1-13) ABOVE ARE ALL “NEVER”, SKIP TO QUESTION 16]

Now I will ask you some questions about the reasons for the unfair treatment experiences that you have had.

15. What do you think was the main reason for this/these experience(s)? [Show CARD EOD#5]

(1) Your ancestry or national origins

Are there other reasons on the list that were a part of the experience?

(2) Your gender

(3) Your race

(4) Your age

(5) Your religion

(6) Your height or weight

(7) Your shade of skin color

(8) Your sexual orientation

(9) Your education or income level

(10) A physical disability

(11) Your language or accent

(12) Your ability to read

H. Day to Day Unfair Treatment – Medical Care

[IF PARTICIPANT ANSWERED “YES” TO SECTION F, Q14 (4, 5 OR 6) - RELATED TO MEDICAL CARE - GO TO QUESTION 16, OTHERWISE SKIP TO QUESTION 17]

Now I will ask you some more questions about the unfair treatment experiences at the medical care setting that you have had.

15. You mentioned unfair treatment when getting medical care – can you describe what happened in more detail? (SKIP ANY OF THE FOLLOW UP QUESTIONS BELOW IF RESPONDENT INFO IN DESCRIPTION)

1. When did the event take place?

2. How did it make you feel – what emotions did you have?

3. What did you do in response to the situation?

4. In general how much stress did this event cause you?

 None

 A Little

 Some

 A lot

 Extreme

5. Do you think that this event has any effect on the way you use the medical care system or the way you interact with doctors/nurses about your own health?

6. Has it affected the way you use medical care system or interact with doctors/nurses in regard to your child’s health? [IF YES], please explain.

9. Comparing Two EOD Questions

Now let’s talk about your opinion on some of the questions you have already answered.

[SHOW CARDS EOD #2 & EOD #4A]

15. Please carefully read both of these questions. Do you think they are getting at the same thing or different things?

ITEM CARD EOD #2

Have you ever experienced discrimination, been prevented from doing something, or been hassled or made to feel inferior in any of the following situations because of your race, ethnicity, or color?

1. At school?

2. Getting hired or getting a job?

3. At work?

4. Getting housing?

5. Getting medical care?

6. Getting service in a store or restaurant?

7. Getting credit, bank loans, or a mortgage?

8. On the street or in a public setting?

9. From the police or in the courts?

ITEM CARD EOD #4A

In your day-to-day life, have any of the following things ever happened to you?

Response options:

(1) You have been treated with less courtesy than other people

(2) You have been treated with less respect than other people

(3) You have received poorer service than other people at restaurants or stores

(4) You have been treated with less courtesy than other people when getting medical care

(5) You have been treated with less respect than other people when getting medical care

(6) You have received poorer service than other people when getting medical care

(7) People have acted as if they think you are not smart

(8) People have acted as if they are afraid of you

(9) People have acted as if they think you are dishonest

(10) People have acted as if they’re better than you are

(11) You have been called names or insulted

(12) You have been threatened or harassed

(13) You have been followed around in stores

1. Why? Please explain.

9. Discrimination Related Stress

Now I would like to ask you some questions related to stress caused by discrimination.

15. In general how much stress has discrimination caused you in the past year?

 None

 A Little

 Some

 A lot

 Extreme

15. In general how much stress has discrimination caused you over your lifetime?

 None

 A Little

 Some

 A lot

 Extreme

9. Mode

15. Finally, there are several methods that we can use to ask questions about discrimination and unfair treatment. [SHOW CARD EOD#3], which of the following methods do you think would yield the best responses?

 Face-to-face interview-- like we are doing now

 Paper and pencil form that you complete by yourself

 Computer survey that you complete by yourself

 A computer survey where you wear headphones and hear questions read to you through

headphones.

1. Why?

15. In a face to face interview, how difficult would it be to respond truthfully?

1. Why?

15. In a face to face interview, how difficult would it be to respond truthfully to an interviewer of a different race/ethnicity?

1. Why?

III. Stress

In this next section, I am going to ask you some questions about stress and your experiences with stress.

1. Types of Stress

1. People often talk about stress – What does this word mean to you?

2. Think back across the last week, what types of things in your life made you feel most stressed?

3. Think back across the last year, what types of things in your life made you feel most stressed?

4. In general, what types of things help you to feel less stressed?
   
   
   

2. Perceived Stress/Appraisal, Emotional Response and Behavioral Response

[FOR EACH SOURCE NAMED BY THE RESPONDENT IN QUESTIONS 2 AND 3 ABOVE ASK THE FOLLOWING]

5. You mentioned ________ as a source of stress, can you explain why this is/was stressful?

   1. How did it make you feel?

6. How did you cope with the stress?

1. Did you talk to someone about it or did you keep it to yourself?

3. Parenting Stress

Now let’s talk about how stress is related to parenting.

7. If you are stressed, do you think this affects your child?

   1. How?

   2. Can you give an example?

8. Raising a child can be stressful at times, are there parts of your parenting role that you consider to be personally stressful?

   1. [IF YES], can you describe them?

9. If you are stressed, do you think this affects your parenting?

   1. How?

   2. Can you give an example?

10. So going back to the stressors you mentioned earlier, does _________ affect your parenting? [FILL IN THE BLANK FOR EACH OF THE STRESSORS REPORTED IN QUESTIONS 2 & 3]:

    1. IF YES, How?

4. Stress – Levels of Experienced Stress

11. I am going to list the types of things in your life that are stressors. [READ ALL SOURCES NAMED BY THE RESPONDENT IN QUESTIONS 2 AND 3 ABOVE]

    1. Can you order these—which one would you say is the most stressful? Next? Next?....

5. Stress - Frequency

12. How often would you say you feel stressed?

 Never

 Almost Never

 Sometimes

 Fairly Often

 Very often

IV. Educational attainment

Now I will ask you some questions about your educational background.

1. What is the total number of years of formal schooling you have had?

1. What did you have to think about to answer this question?

2. Please look at the card and tell me what is the highest degree or level of school that {you/NAME} {have/has} completed? [SHOW CARD EA # 1]

 NO SCHOOL

 LESS THAN HIGH SCHOOL DIPLOMA OR GED

 HIGH SCHOOL DIPLOMA OR GED

 SOME COLLEGE BUT NO DEGREE

 ASSOCIATE DEGREE

 BACHELOR’S DEGREE (FOR EXAMPLE BA OR BS)

 POST GRADUATE DEGRESS (FOR EXAMPLE MASTERS OR DOCTORAL)

 REFUSED

 DON’T KNOW

3. How easy was it for you to pick an answer from the list [SHOW CARD EA #1] that best fits your education?

1. Why?

2. Were you educated in another country outside the US? [IF RESPONDENT ANSWERS YES GO TO QUESTION 4 OTHERWISE SKIP TO QUESTION 5]:

4. How was the education system similar or different from the education system in the US?

1. How easy or hard was it to answer Question 2 since you were in a different education system?

2. Is there a better way to ask about your level of education?

5. How satisfied are you with the amount of schooling you have had?

1. Why?

6. How satisfied are you with the quality of schooling you have had?

1. Why?

V. Demographic Characteristics

Now I will ask you a few more questions about your background.

1. What is the date of birth of your child(ren)?

Child one: |___|___| |___|___| |___|___|___|___|

MM DD YYYY

Child two: |___|___| |___|___| |___|___|___|___|

MM DD YYYY

Child three: |___|___| |___|___| |___|___|___|___|

MM DD YYYY

Child four: |___|___| |___|___| |___|___|___|___|

MM DD YYYY

Child five: |___|___| |___|___| |___|___|___|___|

MM DD YYYY

2. Now I’d like to ask about your marital status. Currently, are you:

 Married

 Not married but living together with a partner of the opposite sex

 Not married but living together with a partner of the same sex

 Widowed

 Divorced

 Separated, or

 Never been married

 REFUSED

 DON’T KNOW

If born outside of the United States (Screener Question 4)

3. You mentioned you were born in ______________ (enter country stated in Screener question 4). About how long have you lived in the United States?

|___|___|

YEARS

 REFUSED

 DON”T KNOW

4. To get a picture of people’s financial situation, we need to know the general range of income of all the people we interview. Now, think about your household’s total income from all sources, before taxes, including wages, salaries, and any other income. About how much did your household receive in the last year?

[SHOW CARD DC #3]

 LESS THAN $4,999

 $5,000-$9,999

 $10,000-$19,999

 $20,000-$29,999

 $30,000-$39,999

 $40,000-$49,999

 $50,000-$74,999

 $75,000-$99,999

 $100,000-$199,999

 $200,000 OR MORE

 REFUSED

 DON’T KNOW

CLOSING STATEMENT

Thank you for taking the time to complete this interview. Your thoughts and opinions are valuable to us and our research process.

Public reporting burden for this collection of information is estimated to average 60 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: NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (0925-XXXX). Do not return the completed form to this address.