Form 20.1 Survey

Continuation of National Children's Study Vanguard (Pilot) Study Data Collection: Study Visits through 60-Months and Sibling Birth Enrollment

NonInterviewRespondentSAQ

Non-Interview Respondent Interview

OMB: 0925-0593

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OMB #: 0925-0593

OMB Expiration Date: 8/31/2014

Non-Interview Respondent SAQ, Phase 2g

OMB Specification


Non-Interview Respondent SAQ

Event Category:

Trigger-Based

Event:

Non-Interview Respondent

Administration:

Pregnancy Screener Sibling Birth Cohort, Pre-Pregnancy Screener, PV1, PV2, Birth, 3M, 6M, 9M, 12M, 18M, 24M, 30M, 36M, 42M, 48M, 54M, 60M

Instrument Target:

Pre-Pregnant Woman (Pre-Pregnancy Screener, Pregnancy Screener Sibling Cohort);

Pregnant Woman (PV1, PV2);

Father/Father Figure (PV1, PV2, 9M, 18M);

Biological Mother (Birth);

Biological Father (42M);

Primary Caregiver (3M, 6M, 9M, 12M, 18M, 24M, 30M, 36M, 42M, 48M, 54M, 60M)

Instrument Respondent:

Pre-Pregnant Woman (Pre-Pregnancy Screener, Pregnancy Screener Sibling Cohort);

Pregnant Woman (PV1, PV2);

Father/Father Figure (PV1, PV2, 9M, 18M);

Biological Mother (Birth);

Biological Father (42M);

Primary Caregiver (3M, 6M, 9M, 12M, 18M, 24M, 30M, 36M, 42M, 48M, 54M, 60M)

Domain:

Questionnaire

Document Category:

Questionnaire

Method:

Self-Administered

Mode (for this instrument*):

In-Person, PAPI

OMB Approved Modes:

In-Person, PAPI;
Phone, PAPI;
Web-Based, CAI

Estimated Administration Time:

5 minutes

Multiple Child/Sibling Consideration:

Per Event

Special Considerations:

N/A

Version:

1.0

MDES Release:

4.0

*This instrument is OMB-approved for multi-mode administration but this version of the instrument is designed for administration in this/these mode(s) only.


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Non-Interview Respondent SAQ



TABLE OF CONTENTS





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Non-Interview Respondent SAQ



GENERAL PROGRAMMER INSTRUCTIONS:

WHEN PROGRAMMING INSTRUMENTS, VALIDATE FIELD LENGTHS AND TYPES AGAINST THE MDES TO ENSURE DATA COLLECTION RESPONSES DO NOT EXCEED THOSE OF THE MDES. SOME GENERAL ITEM LIMITS USED ARE AS FOLLOWS:


DATA ELEMENT FIELDS

MAXIMUM CHARACTERS PERMITTED

DATA TYPE

PROGRAMMER INSTRUCTIONS

ADDRESS AND EMAIL FIELDS

100

CHARACTER


UNIT AND PHONE FIELDS

10

CHARACTER


_OTH AND COMMENT FIELDS

255

CHARACTER

  • Limit text to 255 characters

FIRST NAME AND LAST NAME

30

CHARACTER

  • Limit text to 30 characters

ALL ID FIELDS

36

CHARACTER


ZIP CODE

5

CHARACTER


ZIP CODE LAST FOUR

4

CHARACTER


CITY

50

CHARACTER


DOB AND ALL OTHER DATE FIELDS (E.G., DT, DATE, ETC.)

10

NUMERIC


CHARACTER



  • DISPLAY AS MM/DD/YYYY

  • STORE AS YYYY-MM-DD

  • HARD EDITS:

MM MUST EQUAL 01 TO 12

DD MUST EQUAL 01 TO 31

YYYY MUST BE BETWEEN 1900 AND CURRENT YEAR.

TIME VARIABLES

TWO-DIGIT HOUR AND TWO-DIGIT MINUTE, AM/PM DESIGNATION

NUMERIC

  • HARD EDITS:

HOURS MUST BE BETWEEN 00 AND 12;

MINUTES MUST BE BETWEEN 00 AND 59

NUMBER OF HOURS PER DAY

TWO-DIGIT HOUR

NUMERIC

  • HARD EDITS:

HOURS MUST BE BETWEEN 1 AND 24

NUMBER OF DAYS PER WEEK

ONE-DIGIT

NUMERIC

  • HARD EDITS:

DAYS PER WEEK MUST BE BETWEEN 1 AND 7





Instrument Guidelines for Participant and Respondent IDs:

PRENATALLY, THE P_ID IN THE MDES HEADER IS THAT OF THE PARTICIPANT (E.G. THE NON-PREGNANT WOMAN, PREGNANT WOMAN, OR THE FATHER).


POSTNATALLY, A RESPONDENT ID WILL BE USED IN ADDITION TO THE PARTICIPANT ID BECAUSE SOMEBODY OTHER THAN THE PARTICIPANT MAY BE COMPLETING THE INTERVIEW. FOR EXAMPLE, THE PARTICIPANT MAY BE THE CHILD AND THE RESPONDENT MAY BE THE MOTHER, FATHER, OR ANOTHER CAREGIVER. THEREFORE, MDES VERSION 2.2 AND ALL FUTURE VERSIONS CONTAIN A R_P_ID (RESPONDENT PARTICIPANT ID) HEADER FIELD FOR EACH POST-BIRTH INSTRUMENT. THIS WILL ALLOW ROCs TO INDICATE WHETHER THE RESPONDENT IS SOMEBODY OTHER THAN THE PARTICIPANT ABOUT WHOM THE QUESTIONS ARE BEING ASKED.



A REMINDER:

ALL RESPONDENTS MUST BE CONSENTED AND HAVE RECORDS IN THE PERSON, PARTICIPANT, PARTICIPANT_CONSENT AND LINK_PERSON_PARTICIPANT TABLES, WHICH CAN BE PRELOADED INTO EACH INSTRUMENT. ADDITIONALLY, IN POST-BIRTH QUESTIONNAIRES WHERE THERE IS THE ABILITY TO LOOP THROUGH A SET OF QUESTIONS FOR MULTIPLE CHILDREN, IT IS IMPORTANT TO CAPTURE AND STORE THE CORRECT CHILD P_ID ALONG WITH THE LOOP INFORMATION. IN THE MDES VARIABLE LABEL/DEFINITION COLUMN, THIS IS INDICATED AS FOLLOWS: EXTERNAL IDENTIFIER: PARTICIPANT ID FOR CHILD DETAIL.





NON-INTERVIEW RESPONDENT SAQ


NIR01000. We are sorry to hear that you have decided not to join or to stop participating in the National Children’s Study.  We would like you to answer a few questions about your decision.  Your answers are very important to us. There are no right or wrong answers. You can skip over any question or leave the questionnaire at any time. We will use this information to improve the quality of the National Children’s Study for future participants.


NIR02000/(NIR_REFUSAL_REASON). What is the main reason you do not want to join or to continue participating in the National Children’s Study?  If there is more than one reason, select the main reason.


Label

Code

Go To

Too busy/no time

1

NIR_LOW_BURDEN

Confidentiality/privacy issues

2

NIR05000

Not interested (in topic or in general)

3

NIR05000

Lack of incentives/benefit (nothing in it for me)

4

NIR05000

Too intrusive

5

NIR05000

Do not believe in studies

6

NIR05000

Afraid to participate

7

NIR05000

Legitimacy issues/think study is a scam

8

NIR05000

Waste of time or money

9

NIR05000

Concerns about providing specimens

10

NIR05000

None of the government's business

11

NIR05000

Not sure of purpose

12

NIR05000

Family reasons

13

NIR05000

Safety concerns

14

NIR05000

Concerns about genetic information

15

NIR05000

Moving

16

NIR05000

Social/religious reasons

17

NIR05000

Goals of study not congruent with original understanding

18

NIR05000

Medical issues

19

NIR05000

Lost interest in participating

20

NIR05000

Spouse/partner not supportive of participation

21

NIR05000

External pressure to withdraw

22

NIR05000

Heard bad things about the study

23

NIR05000

No reason

24

NIR05000

Other

-5



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR03000/(NIR_REFUSAL_REASON_OTH). Specify: ______________________________


SOURCE

National Children’s Study Vanguard Phase (modified)


NIR04000/(NIR_LOW_BURDEN). We understand that joining or continuing to participate in the National Children’s Study requires you to give up valuable personal time.  Would you change your mind if there was an option to participate that required less of your time?


Label

Code

Go To

Yes

1


No

2



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR05000. Read each of the statements below.  Please indicate whether you strongly agree, somewhat agree, somewhat disagree, or strongly disagree with each statement. If the statement does not apply to your situation, select “Not applicable”.


SOURCE

National Children’s Study Vanguard Phase


NIR06000/(NIR_BUSY_SCHEDULE). My work/personal schedule is very busy and I do not have time to participate in the National Children’s Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR07000/(NIR_NO_SUPPORT). My partner, husband, and/or family supports my participation in the National Children's Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR08000/(NIR_STAFF_ANSWERED). The Study staff answered my questions about the National Children's Study to my satisfaction.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR09000/(NIR_NEGATIVE_PRESS). I heard or read something negative or uncomplimentary about the National Children's Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR10000/(NIR_STAFF_INHOME). I was comfortable with Study staff coming to my home for Study appointments.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR11000/(NIR_PROVIDE_SAMPLES). I was comfortable with the idea of providing biological samples, such as blood and urine.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR12000/(NIR_CONFIDENTIALITY). I worried the information about me and my family might not be kept confidential.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR13000/(NIR_COMPENSATION1). If the Study had offered more cash as compensation for my time and effort, I might have joined or stayed in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR14000/(NIR_COMPENSATION3). If I had felt that I was learning more about children's health, I might have joined or stayed in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR15000/(NIR_COMPENSATION2). If I had felt that I was learning more about my own child's health, I might have joined or stayed in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR16000/(NIR_COMPENSATION4). If I had felt more a part of the National Children's Study community, I might have joined or stayed in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR17000/(NIR_TIME_COMMITMENT). Committing to participate in a study lasting 21 years seemed overwhelming to me.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR18000/(NIR_FRIENDLY_STAFF). The National Children's Study staff were friendly.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR19000/(NIR_STUDY_UNCLEAR). I was unclear about what I would be asked to do if I participated in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR20000/(NIR_CHILD_PARTICIPATION). I was uncomfortable with having my child participate in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly agree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase


NIR21000/(NIR_FEWER_QUESTIONS). If I was asked fewer questions, I might have joined or stayed in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR22000/(NIR_INTERNET_SURVEY). If I was able to complete a written or Internet-based survey, I might have joined or stayed in the Study.


Label

Code

Go To

Strongly agree

1


Somewhat agree

2


Somewhat disagree

3


Strongly disagree

4


Not applicable

-7



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR23000/(NIR_ENOUGH_INFO). Do you feel that you were provided enough information about the National Children's Study before you were asked to join?


Label

Code

Go To

Yes

1

NIR_COMMUNICATION_FREQ

No

2



SOURCE

National Children’s Study Vanguard Phase (modified)


NIR24000/(NIR_ENOUGH_INFO_OTH). What type or types of information do you feel would have been helpful to you before you were asked to join the Study?

 

_____________________________________________________________________________________________________________


SOURCE

National Children’s Study Vanguard Phase (modified)


NIR25000/(NIR_COMMUNICATION_FREQ). Thinking about the number of letters, phone calls, and other correspondence you received from us to review your information, remind you of upcoming appointments, and provide other Study updates, would you say we communicated with you:


Label

Code

Go To

Much too often

1


Too often

2


Just the right amount

3


Too little

4


Much too little

5



SOURCE

National Children’s Study Vanguard Phase


NIR26000/(NIR_IMPORTANCE). How important do you think the National Children's Study is?

 

Would you say that the National Children's Study is...


Label

Code

Go To

Very important

1


Somewhat important

2


Neither important nor unimportant

3


Not very important

4


Not important at all

5



SOURCE

National Children’s Study Vanguard Phase


NIR27000/(NIR_INFLUENCE). Did any friends or family influence your decision not to join or to stop participating in the National Children's Study?


Label

Code

Go To

Yes

1


No

2

NIR_FRIENDS_FAMILY


SOURCE

National Children’s Study Vanguard Phase (modified)


NIR28000/(NIR_WHO_INFLUENCE). Who influenced your decision not to join or to stop participating in the National Children's Study? Select all that apply.


Label

Code

Go To

Mother/Father

1


Brother/Sister

2


Aunt/Uncle

3


Grandparent

4


Neighbor

5


Friend

6


Other

-5



SOURCE

National Children’s Study Vanguard Phase (modified)


PARTICIPANT INSTRUCTIONS

  • If you selected "Other" and any other response(s), please go to NIR29000.

  • If you did not select "Other," please go to ​NIR30000.


PROGRAMMER INSTRUCTIONS

  • IF NIR_WHO_INFLUENCE = -5 OR ANY COMBINATION OF 1 THROUGH 6 AND -5, GO TO NIR_WHO_INFLUENCE_OTH.

  • OTHEWISE, GO TO NIR_FRIENDS_FAMILY.


NIR29000/(NIR_WHO_INFLUENCE_OTH). Specify: _______________________________


SOURCE

National Children’s Study Vanguard Phase


NIR30000/(NIR_FRIENDS_FAMILY). Do you think that you would be more likely to join or continue to participate in the National Children's Study if it was suggested by a friend or family member?


Label

Code

Go To

Yes

1


No

2



SOURCE

National Children’s Study Vanguard Phase


NIR31000/(NIR_FINAL). If you have any additional comments, feedback, or suggestions about the National Children’s Study, please enter them in this box.

 

_____________________________________________________________________________________________________________


SOURCE

National Children’s Study Vanguard Phase (modified)


NIR32000. Thank you for taking the time to answer these questions.



FOR OFFICE USE ONLY:


FOU01000/(P_ID). PARTICIPANT ID: ________________________


FOU02000/(R_P_ID). RESPONDENT ID: ___________________________


Public reporting burden for this collection of information is estimated to average 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: NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (0925-0593*). Do not return the completed form to this address.

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