Form 20.1 Survey

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

GENERAL PROGRAMMER INSTRUCTIONS: 1

NON-INTERVIEW RESPONDENT SAQ 3

FOR OFFICE USE ONLY: 12

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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.