Form 28.1 Revised 28.1 Revised Survey

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

ParentGuardianDeathQuestionnaire_REVISED

Parent-Caregiver & Child Death Interview

OMB: 0925-0593

Document [docx]
Download: docx | pdf

OMB #: 0925-0593

OMB Expiration Date: 8/31/2014

Parent-Caregiver Death Questionnaire, Phase 2g

OMB Specification


Parent-Caregiver Death Questionnaire


Event Category:

Trigger-Based

Event:

Parent-Caregiver Death

Administration:

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

Instrument Target:

Biological Mother; Biological Father; Primary Caregiver; Secondary Caregiver

Instrument Respondent:

Proxy

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 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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Parent-Caregiver Death Questionnaire



TABLE OF CONTENTS





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Parent-Caregiver 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.





PARENT/CAREGIVER DEATH INTERVIEW


(TIME_STAMP_PDI_ST).


PROGRAMMER INSTRUCTIONS

  • INSERT DATE/TIME STAMP

  • PRELOAD PARTICIPANT ID (P_ID) AND RESPONDENT ID (R_P_ID) FOR ADULT.

  • PRELOAD AND DISPLAY R_FNAME FROM PARTICIPANT VERIFICATION QUESTIONNAIRE AS APPROPRIATE THROUGHOUT THE INSTRUMENT


PDI01000/(PARENT_DEATH_INTRO). I am sorry to hear that {R_FNAME} passed away.  {He/She} was an important part of the National Children's Study and we appreciate 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 interviewed {R_FNAME} and when {he/she} died.  We would like to talk with someone who can provide some information about {R_FNAME}'s death.  We understand that this is a difficult time for you and {your/R_FNAME}'s family.  If you are unable or do not wish to talk about {R_FNAME}'s death right now, I can {call/come} back at a better time.


Would you be able to answer some questions about {R_FNAME}'s death?


Label

Code

Go To

YES

1


NO

2

PDI28000

REFUSED

-1

PDI28000

DON'T KNOW

-2

PDI28000


SOURCE

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


DATA COLLECTOR INSTRUCTIONS

  • IF MODE = CATI, DISPLAY "call"

  • OTHERWISE, DISPLAY "come"


PDI03000. 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 Questionnaire (modified)


PDI04000/(RELATION_TYPE). What was your relationship to {R_FNAME}?  Were you {his/her}


Label

Code

Go To

Spouse

1

PDI06000

Unmarried partner

2

PDI06000

Ex-spouse

3

PDI06000

Parent or parent-in-law

4

PDI06000

Child or step-child

5

PDI06000

Brother or sister

6

PDI06000

Other relative or other in-law

7


Friend

8

PDI06000

Related in some other way

-5


REFUSED

-1

PDI06000

DON'T KNOW

-2

PDI06000


SOURCE

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


PDI05000/(RELATION_TYPE_OTH). SPECIFY:  ___________________________________


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



SOURCE

New


PDI06000. When did {R_FNAME} die?


INTERVIEWER INSTRUCTIONS

  • IF INCOMPLETE DATE IS GIVEN, PROBE FOR COMPLETE DATE.


SOURCE

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



PDI07000/(STATE_OF_DEATH). In what state did {R_FNAME}'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


PDI08000/(CITY_OF_DEATH). In what city did {R_FNAME}'s death occur?

___________________________________________

                                  CITY


INTERVIEWER INSTRUCTIONS

  • CONFIRM SPELLING OF CITY


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



SOURCE

New


PDI09000/(COUNTY_OF_DEATH). In what county did {R_FNAME}'s death occur?

_____________________________________

                           COUNTY


INTERVIEWER INSTRUCTIONS

  • CONFIRM SPELLING OF COUNTY


Label

Code

Go To

REFUSED

-1


DON'T KNOW

-2



SOURCE

New


PDI11000/(MAIN_CAUSE). What was the cause of death?


SPECIFY:  __________________________________________


Label

Code

Go To

REFUSED

-1

CONSENT

DON'T KNOW

-2

CONSENT


SOURCE

New


PDI22000/(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 {R_FNAME}'s death certificate.  Would you authorize us to obtain {R_FNAME}'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 PDI28000.

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


PDI23000/(CONSENT_FORM). WAS THE FORM FILLED OUT CORRECTLY AND COMPLETELY?


Label

Code

Go To

YES

1

PDI28000

NO

2



SOURCE

New


PDI24000/(NOT_FILLED_OUT). WHY WAS THE FORM NOT FILLED OUT CORRECTLY AND COMPLETELY?


Label

Code

Go To

RESPONDENT REFUSED AFTER SEEING FORM

1


SOME OTHER REASON

2

PDI28000


SOURCE

New


PDI25000/(NO_CONSENT). DID THE RESPONDENT INDICATE WHY THEY WOULD NOT ALLOW CONSENT?


Label

Code

Go To

YES

1


NO

2

PDI28000


SOURCE

New


PDI26000/(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 PDI28000.


PDI27000/(WHY_NO_CONSENT_OTH). WHAT OTHER REASON(S)?

 

SPECIFY:  ___________________________________________


SOURCE

New


PDI28000. 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_PDI_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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