Year of data collection
2014 = 2014 collection - 2015 study

Final status of case - 2015
1 = Full complete interview, caregiver of adult
2 = Completed screener only - incomplete after
5 = Disqualified caregiver of adult - recode Sc1a&b, keep screener only

Qualified flag - 2015 online only
1 = Full complete interview, caregiver of adult
2 = Not full complete

Final disposition - 2015
1 = Refused both caregiver questions - terminated not fully screened
2 = Refused SC9 - terminated not fully screened
3 = Refused SC10 - terminated not fully screened
4 = Refused SC11a - terminated not fully screened
5 = Refused SC12a and not Hispanic - terminated not fully screened
6 = Not adult Caregiver - terminated fully screened
7 = Number of adult recipients is 0 - terminated fully screened
8 = Caregiver in institution - terminated fully screened
9 = No adult recipient beyond normal care - terminated fully screened
10 = Number of adult recipients Q2b is 0 - terminated fully screened
11 = Disqualfied adult caregiver no ADL IADL or MN - terminated fully screened
12 = Refused both caregiver questions - terminated not fully screened
13 = Disqualified adult caregiver after data checks - terminated fully screened
14 = Validated adult caregiver thru N3 MedNurs - Incomplete caregiver fully screened
15 = Suspected adult caregiver not validated - Incomplete caregiver fully screeneed
90 = Incomplete - breakoff location varies - fully screeneed
95 = Refused full household information -terminated not fully screened
99 = Initial caregiver - terminated not fully screened
100 = Adult caregiver - full complete

Is record fully screened?
0 = Not fully screened record
1 = Yes - fully screened record

Sample Type - 2015
1 = Gen pop online
2 = African-American oversample online
3 = Hispanic oversample online
4 = Asian oversample online
5 = Age 65-74 oversample online
6 = Age 75+ oversample online
7 = Asian oversample phone

Mode of data collection
1 = Landline
2 = Cell phone
3 = Online

S1a - Caregiver of adult in past 12 months Screener Q
1 = Yes - Respondent is caregiver
2 = Yes - Someone else in HH is caregiver
3 = No
4 = Don't know
5 = Refused
9 = Not asked - oversamples targeting adult caregiver only

SC2 - Age of initial respondent
998 = Don't know
999 = Refused

SC2 - Categorical Age of initial respondent
1 = 18 to 24
2 = 25 to 34
3 = 35 to 44
4 = 45 to 54
5 = 55 to 64
6 = 65 to 74
7 = 75 or older
8 = Don't know
9 = Refused

SC4 - Race/Ethnicity of initial respondent mention1
1 = White
2 = African-American
3 = Asian/Pacific Islander
4 = Other

SC5 - Gender of initial respondent
1 = Male
2 = Female

Hispanic status of initial respondent - created
1 = Hispanic
2 = Non-hispanic
3 = DK 2009
8 = DK 2004
9 = Ref 2004

Race/ethnicity of initial respondent single punch - created
1 = White
2 = Black
3 = Asian
4 = Other
5 = Hispanic

Age of initial respondent - 2015 online only created
1 = 18-24
2 = 25-34
3 = 35-44
4 = 45-54
5 = 55-64
6 = 65-74
7 = 75+

SC6 - Size of household
1 = Lives alone
98 = Don't know
99 = Refused

SC7 - Are you person who owns or rents residence?
1 = Yes
2 = No
3 = Don't know
4 = Refused

SC10 - Age of householder - if not HHer
97 = 97 or older
98 = Don't know
99 = Refused

SC11 - Hispanic ethnicity of householder - if not HHer
1 = Not
2 = Yes Mexican, Mexican American, Chicano
3 = Yes Puerto Rican
4 = Yes Cuban, Cuban American
5 = Yes Central/South American
8 = Yes other
9 = Not sure

SC12 - Race of Household mention1 - if not HHer
1 = White
2 = African-American
3 = American Indian or Alaskan Native
4 = Asian
5 = Native Hawaiian/Pacific Islander
6 = 2 or more races
7 = Refused

Householder status of Initial respondent - created
0 = No, not householder
1 = Yes, householder

Type of household family or not - created
1 = Family
2 = Non-family

Hispanic status of householder - created
1 = Hispanic
2 = non-Hispanic
3 = Don't know

Race/ethnicity of householder single punch - created
1 = White
2 = African-American
3 = Asian
4 = Other
5 = Hispanic

Age of householder - created
997 = Householder age is categorized in s2b and agehhcat

Age of householder categorical - created
1 = 18-24
2 = 25-34
3 = 35-44
4 = 45-54
5 = 55-64
6 = 65-74
7 = 75 or older

Gender of householder - available only for IR who were HH - created
0 = Unknown
1 = Male
2 = Female

S13 - Asked to speak to caregiver in household - 2015 Landline Phone only
1 = Yes

Final 2015 Caregiver Status at Household Level
1 = Caregiver of adult only in HH
2 = Caregiver of child only in HH
3 = Caregiver of adult and child in HH
4 = No caregivers in HH

Age of caregiver - created
998 = (VOL) Don't know
999 = (VOL) Refused

Age of caregiver categorical - created
1 = 18 to 49
2 = 50 to 64
3 = 65+
4 = Don't know, Refused

Hispanic status of caregiver - created
1 = Hispanic
2 = Non-hispanic
3 = DK 2009
4 = REF 1997
8 = DK 2004
9 = Ref 2004

Gender of caregiver - created
1 = MALE
2 = FEMALE

Q1 - Currently providing care or Past?
1 = Current
2 = Past 12 months
3 = Don't know
4 = Refused

Q2/Q2b - Final number of adult recipients - created
0 = None
98 = Don't know
99 = Refused

Q3 - Are all adult recipients in institutional setting together - if 5+?
1 = Yes
2 = No
3 = Don't know

Q4 - How many of these adults have some sort of special need - if 5+?
1 = All
2 = Some
3 = None
4 = Don't know

Age of Care Recipient categorical - created
1 = Care recipient 0-17
2 = Care recipient 18-49
3 = Care recipient 50+
998 = Don't know
999 = Refused

Type of caregiver - adult or child main recipient - created
1 = Adult Care Recipient
2 = Child Care Recipient

Q7 - Relationship of recipient to caregiver
1 = Aunt
2 = Brother
3 = Brother-In-Law
4 = Companion/Partner
5 = Daughter
6 = Father
7 = Father-In-Law
8 = Granddaughter
9 = Grandfather
10 = Grandmother
11 = Grandparent-In-Law
12 = Grandson
13 = Mother
14 = Mother-In-Law
15 = Nephew
16 = Niece
17 = Sister
18 = Sister-In-Law
19 = Son
20 = Spouse
21 = Uncle
22 = Other Relative
23 = Foster child
24 = Friend
25 = Guardianee
26 = Neighbor
27 = Other non-relative
28 = (VOL Don't know
29 = (VOL) Refused
30 = Cousin
31 = Aunt/Uncle
32 = Friend/ Non relative/ Neighbor
33 = Live in Nurse's Aid
34 = Home Health Org
35 = Former Spouse
36 = Same sex partner

Gender of care recipient - created
1 = Male
2 = Female
3 = Don't know
4 = Refused
5 = Unknown

Q11 - Where does/did recipient live?
1 = In your household
2 = Within 20 minutes of your home
3 = Between 20-60 minutes from your home
4 = 1-2 hours away
5 = More than 2 hours away
6 = Don't know
7 = Refused

Q12 - Frequency visiting recipient - if not in same household
1 = More than once a week
2 = Once a week
3 = Few times a month
4 = Once a month
5 = Few times a year
6 = Less often
7 = Don't know
8 = Refused

Q13 - Which best describes where recipient lives/lived?
1 = His/her own home
2 = Someone else home
3 = Independent living or retirement community
4 = Assisted living facility
5 = Nursing or long-term care facility
6 = Group home - children only
7 = Foster care - children only
8 = Somewhere else
9 = Don't know
10 = Refused

Where recipient lives - created
1 = Recipient's own home
2 = Someone else's home
3 = Indep living or retirement community
4 = Assisted living
5 = Nursing home
6 = Group home
7 = Foster home
8 = Somewhere else
9 = In caregiver's household
10 = Don't know
11 = Refused

Does recipient live with caregiver - created
1 = Yes - lives with caregiver
2 = No - lives elsewhere
3 = Don't know

Q15b - Does recipient live in a rural area?
1 = Yes, rural area
2 = No
3 = Not sure

Q18 - Main problem or illness of recipient
1 = ADD, ADHD, Attention deficit disorder
2 = AIDS
3 = Alzheimer's, confusion, dementia, forgetfulness
4 = Amputee
5 = Arthritis
6 = Asthma, breathing problems
7 = Autism
8 = Back problems
9 = Birth defect
10 = Blindness, vision loss, can't see well
11 = Blood pressure, hypertension
12 = Brain damage or injury
13 = Broken bones
14 = Cancer
15 = Deafness, hearing loss
16 = Diabetes
17 = Epilepsy, seizures
18 = Feeble, unsteady, falling
19 = Heart disease, heart attack
20 = Lung disease, emphysema, COPD
21 = Developmental or intellectual disorder, mental retardation, Down syndrome
22 = Mental illness, emotional illness, depression
23 = Mobility problem, can't get around
24 = Old age, Aging
25 = Osteoporosis
26 = Paraplegia
27 = Parkinson's
28 = Pregnancy
29 = Speaking, can't speak
30 = Stroke
31 = Substance,drug,alcohol abuse
32 = Surgery, wounds
33 = Other
34 = Don't know
35 = Refused
36 = Cerebral palsy
37 = Behavioral/Social issues
38 = Learning disability

Q20 - Recipient has Alzheimer's or other mental confusion?
1 = Yes Alzheimer's
2 = Yes Other
3 = No
4 = Not sure
5 = Refused

Presence of Alzheimer's dementia or mental confusion - created
1 = Yes
2 = No
3 = Not sure/refused

Q20b - Recipient has Parkinson's?
1 = Yes
2 = No
3 = Not sure
4 = Refused

Q21 - How long have you been/did you provide care to recipient?
94 = All their life
95 = Six months to one year
96 = Less than six months
97 = Occasionally, on and off
98 = Not sure
99 = Refused

Length of time provided care all life replaced with recipient age - created
95 = Six months to one year
96 = Less than six months
97 = Occasionally, on and off
98 = Not sure
99 = Refused

Length of time provided care Categorical - created
2 = <6 months
3 = 6 months - 1 year
4 = 1-4 years
5 = 5-9 years
6 = 10+ years
98 = Not sure
99 = Refuse

N1 - How difficult is/was it to help recipient with ADL(s)?
1 = Not at all difficult
2 = 2
3 = 3
4 = 4
5 = Very difficult
6 = Not sure
7 = Don't know

Q25 - Hours of care provided
169 = Less than 1 hr a week
170 = Constant care
171 = Not sure
172 = Refused

Hours of care provided use for mean - created
171 = Not sure
172 = Refused

Categorical hours of care provided - created
1 = 0 to 8 hours
2 = 9 to 20 hours
3 = 21 to 40 hours
4 = More than 40 hours
5 = Don't know, Refused

Lower v Higher hours of care provided - created
1 = Up to 20 hours caregiving
2 = 21+ hours caregiving

Level of burden 5 levels - created
1 = 1 - Lowest burden
2 = 2
3 = 3
4 = 4
5 = 5 - Highest burden

Level of burden categorical - created
1 = Low burden
2 = Med burden
3 = High burden

N6 - Person who prepared you to do medical/nursing tasks - coded mention1
1 = CG Had/has formal medical background
2 = CG cared for others in past
3 = Family member or friend taught CG
4 = Medical staff taught or showed CG
5 = Did not receive any training
6 = Took course or formal training with medical professional
7 = Other
8 = Not sure/Don't know

N7 - How well do you feel that person prepared you to take on medical/nursing tasks?
1 = Very well
2 = Somewhat well
3 = Not well
4 = Not sure
5 = Refused

N8 - Preferred method of learning Medical/Nursing task mention1
1 = Ask: have 24 hour number to call
2 = Hands-on: I do it while a qualified person watches me
3 = Listen: have someone tell me how to do it
4 = On demand: have unlimited access to a video
5 = Read: have word-only written instructions
6 = See: have instructions with pictures
7 = Show: Have qualified person show me how to do it
8 = Other
9 = Not applicable: train myself, already know how to
10 = Not applicable: have a medical background or training already
11 = None of the above/not needed
12 = Refused

N9 - How many times was recipient hospitalized overnight past year?
1 = None
2 = One time
3 = 2 times
4 = 3 or more times
5 = Not sure
6 = Don't know

N10 - Were you included by health care workers in discussions about his/her care?
1 = No and you should've been
2 = Only some of the time
3 = Yes all of the time
4 = Not sure
5 = No but didn't need to be
6 = Refused

N11 - Before s/he was discharged did you receive clear instructions about medical/nursing tasks?
1 = Yes
2 = No
3 = Not applicable
4 = Not sure
5 = Refused

Q29 - Who provides/ed most of the unpaid care?
1 = You/yourself
2 = Someone else
3 = We split it evenly
4 = Not sure
5 = Rwefused

Primary caregiver status - created
1 = Primary - sole or provides most
2 = Non-primary - other is primary or share
3 = Not sure/Refused

Primary caregiver status detailed - created
1 = Sole caregiver
2 = Primary but not sole
3 = Someone else is primary
4 = Shared equally
5 = Not sure/Refused

Q38 - How easy or difficult is/was it to coordinate care between providers?
1 = Very easy
2 = Somewhat easy
3 = Somewhat difficult
4 = Very difficult
5 = Not sure
6 = Refused

Q35 - How much of a physical strain caring for recipient is/was?
1 = Not a strain at all
2 = 2
3 = 3
4 = 4
5 = Very much a strain
6 = Not sure
7 = Refused

Q36 - How emotionally stressful caring for recipient is/was?
1 = Not at all stressful
2 = 2
3 = 3
4 = 4
5 = Very stressful
6 = Not sure
7 = Refused

Choice in taking on care - created
1 = Had a choice
2 = Did not have a choice
3 = Not sure
4 = Refused

Employed while caregiving any point past year - created
1 = Employed
2 = Not employed
3 = Not sure/Refused

N13 - About how many hours a week, on average, do you work? [if employed]
98 = Not sure
99 = Refused

N15 - Reason for leaving job - coded mention1
1 = Needed more time to care for recipient
2 = Could not afford paid help for recipient
3 = Job did not allow flexible work hours
4 = Job did not allow time off with pay
5 = Other
6 = Did not leave job: took leave of absence only/went back
7 = Retired - planned or was able
9 = Refused/no answer

N19 - How difficult is/was it to get affordable care services in your recipient's local area?
1 = Not at all difficult
2 = 2
3 = 3
4 = 4
5 = Very difficult
6 = Not sure
7 = Refused

N20 - Which (policies) do you think would have been helpful - mention1
1 = Require provider to include your name on recipient chart
2 = Require hospitals to inform you about major decisions
3 = Require hospitals/facilities to instruct on medical/nursing tasks
4 = Have respite services available
5 = Require provider ask you what you need to care for recipient
6 = Require provider to ask you what you need to care for yourself
7 = None of the above
9 = Refused

Q47a - Financial policy most helpful
2 = Income tax credit to caregivers
3 = Partially paid leave of absence from work
4 = Program where caregivers could be paid for at least some of the hours they provide care
7 = Not sure
8 = Refused

D1 - Caregiver health status
1 = Poor
2 = Fair
3 = Good
4 = Very Good
5 = Excellent
6 = Not sure
7 = Refused

D2 - How would you say caregiving affected your health?
1 = Made it better
2 = Not affected
3 = Made it worse
4 = Not sure
5 = Refused

Caregiver marital status - created
1 = Married
2 = Living with a partner
3 = Widowed
4 = Separated
5 = Divorced
6 = Single, never married
8 = Don't know
9 = Refused

Caregiver Education highest grade completed - created
1 = Less than high school
2 = High school grad/GED
3 = Some college
4 = Technical school
5 = College grad
6 = Graduate school/Grad work
7 = Don't know
8 = Refused

Caregiver Household Income - created
1 = Under $15,000
2 = $15,000 to $29,999
3 = $30,000 to $49,999
4 = $50,000 to $74,999
5 = $75,000 to $99,999
6 = $100,000 or more
7 = Not sure
8 = Refused
9 = Less than $50,000, not fully specified
10 = More than $50,000, not fully specified

Has Internet Access in home? - online respondents only
1 = Yes
2 = No

Identifies as Lesbian, Gay, Bisexual, and/or Transgender
1 = Yes
2 = No
3 = Refused

Language of Interview
1 = ENGLISH
2 = SPANISH