Form 28.1 Revised 28.1 Revised Survey

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

GENERAL PROGRAMMER INSTRUCTIONS: 1

PARENT/CAREGIVER DEATH INTERVIEW 3

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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.