28.2 Revised Survey

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

ChildDeathQuestionnaire_REVISED

Parent-Caregiver & Child Death Interview

OMB: 0925-0593

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OMB #: 0925-0593

OMB Expiration Date: 8/31/2014

Child Death Questionnaire, Phase 2g

OMB Specification


Child Death Questionnaire


Event Category:

Trigger-Based

Event:

Child Death

Administration:

3M, 6M, 9M, 12M, 18M, 24M, 30M, 36M, 42M, 48M, 54M, 60M

Instrument Target:

Child

Instrument Respondent:

Primary Caregiver

Domain:

Questionnaire

Document Category:

Questionnaire

Method:

Data Collector Administered

Mode (for this instrument*):

Phone, CAI

OMB Approved Modes:

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

Estimated Administration Time:

3 minutes

Multiple Child/Sibling Consideration:

Per Child

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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Child Death Questionnaire



TABLE OF CONTENTS





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Child Death Questionnaire



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

NUMERIC


ZIP CODE LAST FOUR

4

NUMERIC


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


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.





CHILD DEATH INTERVIEW


(TIME_STAMP_CDI_ST).


PROGRAMMER INSTRUCTIONS

  • INSERT DATE/TIME STAMP.

  • PRELOAD C_FNAME, CHILD_SEX AND R_FNAME FROM PARTICIPANT VERIFICATION QUESTIONNAIRE.

  • DISPLAY  NAMES  AS APPROPRIATE THROUGHOUT THE INSTRUMENT.

  • IF CHILD_SEX = 1, DISPLAY “his”, “he”, “himself” AND “him” IN APPROPRIATE FIELDS THROUGHOUT INSTRUMENT.

  • IF CHILD_SEX = 2, DISPLAY “her”, “she”, AND “herself” IN APPROPRIATE FIELDS THROUGHOUT INSTRUMENT.

  • IF C_FNAME = -1 OR -2 IN PARTICIPANT VERIFICATION QUESTIONNAIRE, DISPLAY “the child” FOR C_FNAME In remainder of INSTRUMENT.


CDI01000/(CHILD_DEATH_INTRO). I am sorry to hear that {C_FNAME/the child} passed away. {He/She} was an important part of the National Children’s Study and the Study appreciates the contribution that {he/she} made during {his/her} time in the Study. It is important to the goals of the Study to understand what happened in the time period between the last time we spoke with someone about {C_FNAME/the child} and when {he/she} died. We would like to talk with someone who can provide some information about {C_FNAME/the child}’s death. We understand that this is a difficult time for you and your family. If you are unable or do not wish to talk about {C_FNAME/the child}’s death right now, I can {call/come} back at a better time.

 

Would you be able to answer some questions about {C_FNAME/the child}’s death?


Label

Code

Go To

YES

1


NO

2

CDI36000

REFUSED

-1

CDI36000

DON'T KNOW

-2

CDI36000


SOURCE

National Social Health and Aging Project (NSHAP) Wave 2 Proxy Questionnare (modified)


PROGRAMMER INSTRUCTIONS

  • IF MODE = CATI, DISPLAY “call.”

  • OTHERWISE, DISPLAY “come.”


CDI03000/(LEGAL_GUARDIAN). Were you {C_FNAME/the child}’s legal guardian?


Label

Code

Go To

YES

1


NO

2


REFUSED

-1


DON'T KNOW

-2



SOURCE

New


CDI04000. This questionnaire will take approximately 4 minutes of your time. As a reminder, your participation is completely voluntary. You may refuse to answer any question and you may stop the interview at any time. The information you provide will be kept strictly confidential.  First…


SOURCE

National Social Health and Aging Project (NSHAP) Wave 2 Proxy Questionnare (modified)


CDI05000/(RELATION). What was your relationship to {C_FNAME/the child}? Were you {his/her}…


Label

Code

Go To

Biological or birth mother

1

CDI07000

Adoptive mother

2

CDI07000

Biological father

3

CDI07000

Adoptive father

4

CDI07000

Grandparent

5

CDI07000

Or were you related in some other way

-5


REFUSED

-1

CDI07000

DON'T KNOW

-2

CDI07000


SOURCE

National Children’s Study, Vanguard Phase (Participant Verification) (modified)


CDI06000/(RELATION_OTH). What was your relationship to {C_FNAME/the child}?

 

SPECIFY: ___________________________________


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



SOURCE

New


CDI07000. When did {C_FNAME/the child} die?


INTERVIEWER INSTRUCTIONS

  • IF INCOMPLETE DATE IS GIVEN, PROBE FOR COMPLETE DATE


SOURCE

National Social Health and Aging Project (NSHAP) Wave 2 Proxy Questionnare (modified)


(DATE_OF_DEATH_MM) MONTH

|___|___|

  M     M


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



(DATE_OF_DEATH_DD) DATE:

|___|___|

  D      D


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



(DATE_OF_DEATH_YYYY) YEAR:

|___|___|___|___|

  Y      Y     Y    Y


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



CDI08000/(STATE_OF_DEATH). In what state did {C_FNAME/the child}’s death occur?

|___|___|       

  STATE


INTERVIEWER INSTRUCTIONS

  • ENTER 2-LETTER POSTAL STATE ABBREVIATION


Label

Code

Go To

REFUSED

-1

MAIN_CAUSE

DON'T KNOW

-2

MAIN_CAUSE


SOURCE

New


CDI09000/(CITY_OF_DEATH). In what city did {C_FNAME/the child}’s death occur?

 

________________________________________________                                                                                                                                   

CITY 


INTERVIEWER INSTRUCTIONS

  • CONFIRM SPELLING OF CITY


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



SOURCE

New


CDI10000/(COUNTY_OF_DEATH). In what county did {C_FNAME/the child}’s death occur?

 

__________________________________                                                                                                                                   

COUNTY


INTERVIEWER INSTRUCTIONS

CONFIRM SPELLING OF COUNTY


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



SOURCE

New


SOURCE

National Social Health and AgingProject (NSHAP) Wave 2 Proxy Questionnare (modified)


CDI12000/(MAIN_CAUSE). What was the cause of death?

 

SPECIFY: ___________________________________


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



SOURCE

New


PROGRAMMER INSTRUCTIONS

  • GO TO CONSENT


CDI30000/(CONSENT). Researchers for the National Children’s Study are interested in obtaining death certificates for participants who pass away during their time in the Study. For the Study’s research purposes, we would like your permission to obtain {C_FNAME/the child}’s death certificate. Would you authorize us to obtain {C_FNAME/the child}’s death certificate by filling out {this/the} form {we sent you}, signing and dating it at the bottom{, and sending it back}?


Label

Code

Go To

YES

1


NO

2


REFUSED

-1


DON'T KNOW

-2



SOURCE

New


PROGRAMMER INSTRUCTIONS

  • IF MODE = CAPI, DISPLAY "this" 

  • IF MODE = CATI, DISPLAY "the" "we sent you" AND ", and sending it back"

  • IF CONSENT = 1 AND

    • IF MODE = CAPI, GO TO CONSENT_FORM.

    • IF MODE = CATI, GO TO CDI36000.

  • OTHERWISE, IF CONSENT = 2, -1 OR -2, GO TO NO_CONSENT


CDI31000/(CONSENT_FORM ). WAS THE FORM FILLED OUT CORRECTLY AND COMPLETELY?


INTERVIEWER INSTRUCTIONS

  • HAND FORM TO RESPONDENT, ADDRESS RESPONDENT CONCERNS AND ENSURE THE FORM IS FILLED OUT CORRECTLY


Label

Code

Go To

YES

1

CDI36000

NO

2



SOURCE

New


CDI32000/(NOT_FILLED_OUT). WHY WAS THE FORM NOT FILLED OUT CORRECTLY AND COMPLETELY?


Label

Code

Go To

RESPONDENT REFUSED AFTER SEEING FORM

1


OR SOME OTHER REASON

2

CDI36000


SOURCE

New


CDI33000/(NO_CONSENT). DID THE RESPONDENT INDICATE WHY THEY WOULD NOT ALLOW CONSENT?


Label

Code

Go To

YES

1


NO

2

CDI36000


SOURCE

New


CDI34000/(WHY_NO_CONSENT). WHY DID THE RESPONDENT NOT ALLOW CONSENT?


INTERVIEWER INSTRUCTIONS

  • SELECT ALL THAT APPLY.


Label

Code

Go To

PRIVACY CONCERNS

1


CONFIDENTIALITY CONCERNS

2


TOO PERSONAL

3


GENERAL OBJECTION TO CONSENT

4


SOME OTHER REASON

-5



SOURCE

New


PROGRAMMER INSTRUCTIONS

  • IF WHY_NO_CONSENT = -5, OR ANY COMBINATION OF 1 THROUGH 4 AND -5, GO TO WHY_NO_CONSENT_OTH.

  • OTHERWISE, GO TO CDI36000.


CDI35000/(WHY_NO_CONSENT_OTH). WHAT OTHER REASON(S)?

 

SPECIFY: ___________________________________


SOURCE

New


CDI36000. Those are all of the questions I have for you. On behalf of myself and the National Children’s Study, please accept our sincerest condolences. Thank you for your time.


SOURCE

New


(TIME_STAMP_CDI_ET).


PROGRAMMER INSTRUCTIONS

  • INSERT DATE/TIME STAMP.


Public reporting burden for this collection of information is estimated to average 3 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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