Final ID Number All Cases
Year of data collection
Final status of case - 2015
Qualified flag - 2015 online only
Final disposition - 2015
Is record fully screened?
Sample Type - 2015
Mode of data collection
S1a - Caregiver of adult in past 12 months Screener Q
S1b - Caregiver of child in past 12 months Screener Q
S1c - Caregiver of adult age 50+ in past 12 months Screener Q
SC2 - Age of initial respondent
SC2 - Categorical Age of initial respondent
SC4 - Race/Ethnicity of initial respondent mention1
SC4 - Race/Ethnicity of intial respondent mention 2
S4b - Are you of Asian origin, background, or descent, including the regions of the Indian subcontinent, Far East, Southeast Asia, or Pacific Islands?
SC5 - Gender of initial respondent
Hispanic status of initial respondent - created
Race/ethnicity of initial respondent single punch - created
Age of initial respondent - 2015 online only created
Age of initial respondent combination of sc2 and panel info from online 2014 data
SC6 - Size of household
SC7 - Are you person who owns or rents residence?
SC8 - Are you related to anyone else who lives with you - if HHer only?
SC9 - Is householder related to anyone else who lives in HH - if not HHer?
SC10 - Age of householder - if not HHer
SC11 - Hispanic ethnicity of householder - if not HHer
SC12 - Race of Household mention1 - if not HHer
SC12 - Race of Household mention2 - if not HHer
SC12 - Race of Household mention3 - if not HHer
SC12 - Race of Household mention4 - if not HHer
SC12 - Race of Household mention5 - if not HHer
SC12 - Race of Household mention6 - if not HHer
SC12 - Race of Household mention7 - if not HHer
Household size - created
Householder status of Initial respondent - created
Type of household family or not - created
Hispanic status of householder - created
Race/ethnicity of householder single punch - created
Age of householder - created
Age of householder categorical - created
Gender of householder - available only for IR who were HH - created
S13 - Asked to speak to caregiver in household - 2015 Landline Phone only
S14a - Confirmation of Adult caregiver - 2015 Landline Phone only
Final 2015 Caregiver Status at Household Level
Age of caregiver - created
Age of caregiver categorical - created
Hispanic status of caregiver - created
Race/ethnicity of caregiver single punch - created
Gender of caregiver - created
Q1 - Currently providing care or Past?
Q2/Q2b - Final number of adult recipients - created
Q2 - Number of adult recipients
Q3 - Are all adult recipients in institutional setting together - if 5+?
Q4 - How many of these adults have some sort of special need - if 5+?
Q2b - Number of adult recipients second ask
Age of Care Recipient - created
Age of Care Recipient categorical - created
Type of caregiver - adult or child main recipient - created
Q7 - Relationship of recipient to caregiver
Gender of care recipient - created
Q11 - Where does/did recipient live?
Q12 - Frequency visiting recipient - if not in same household
Q13 - Which best describes where recipient lives/lived?
Q14c - Does/did recipient live alone?
Where recipient lives - created
Does recipient live with caregiver - created
Q15b - Does recipient live in a rural area?
Q16b - Caregiver lives in a rural area?
Q17a - Short-term physical condition
Q17b - Long-term physical condition
Q17c - Emotional or mental health problem
Q17d - Developmental or intellectual disorder or mental retardation
Q17f - Behavioral issue
Q17g - Memory problem
Q17 Count of conditions selected - created
Q18 - Main problem or illness of recipient
Q20 - Recipient has Alzheimer's or other mental confusion?
Presence of Alzheimer's dementia or mental confusion - created
Q20b - Recipient has Parkinson's?
Presence of Parkinson's - created
Q21 - How long have you been/did you provide care to recipient?
Length of time provided care all life replaced with recipient age - created
Length of time provided care to use for means - created
Length of time provided care Categorical - created
Q22a - Get in and out of beds and chairs - Help with ADL
Q22b - Get dressed - Help with ADL
Q22c - Get to and from toilet - Help with ADL
Q22d - Bathe or shower - Help with ADL
Q22e - Dealing with incontinence or diapers - Help with ADL
Q22f - Feeding him/her - Help with ADL
Count of ADLs performed - created
N1 - How difficult is/was it to help recipient with ADL(s)?
Q22g - Giving medicines - Help with IADL
Q23a - Managing finances - Help with IADL
Q23b - Grocery or other shopping - Help with IADL
Q23c - Housework - Help with IADL
Q23d - Preparing meals - Help with IADL
Q23e - Transportation - Help with IADL
Q23f - Arranging outside services - Help with IADL
Count of IADLs performed - created
N2 - Had problems dealing with bank or credit union when helping recipient?
Q23g - Advocating with providers/services/agencies - Key activity
Q23i - Monitoring severity of condition to adjust care - Key activity
Q23j - Communicating with care professionals - Key activity
Q25 - Hours of care provided
Hours of care provided use for mean - created
Categorical hours of care provided - created
Lower v Higher hours of care provided - created
Level of burden 5 levels - created
Level of burden categorical - created
N3 - Helped recipient with medical/nursing tasks?
N4 - How difficult to do medical/nursing tasks?
N5 - Did anyone prepare you to do medical/nursing tasks?
N6 - Person who prepared you to do medical/nursing tasks - coded mention1
N6 - Person who prepared you to do medical/nursing tasks - coded mention2
N6 - Person who prepared you to do medical/nursing tasks - coded mention3
N7 - How well do you feel that person prepared you to take on medical/nursing tasks?
N8 - Preferred method of learning Medical/Nursing task mention1
N8 - Preferred method of learning Medical/Nursing task mention2
N8 - Preferred method of learning Medical/Nursing task mention3
N8 - Preferred method of learning Medical/Nursing task mention4
N8 - Preferred method of learning Medical/Nursing task mention5
N8 - Preferred method of learning Medical/Nursing task mention6
N8 - Preferred method of learning Medical/Nursing task mention7
N8 - Preferred method of learning Medical/Nursing task mention8
N8 - Preferred method of learning Medical/Nursing task mention9
N9 - How many times was recipient hospitalized overnight past year?
N10 - Were you included by health care workers in discussions about his/her care?
N11 - Before s/he was discharged did you receive clear instructions about medical/nursing tasks?
Q28 - Has anyone else provided unpaid help to recipient in past year?
Q29 - Who provides/ed most of the unpaid care?
Primary caregiver status - created
Primary caregiver status detailed - created
Q30 - Did your recipient recieve paid help in past 12 months?
Q38 - How easy or difficult is/was it to coordinate care between providers?
N12 - Do you expect to be caregiver for some adult in the next 5 years?
Q35 - How much of a physical strain caring for recipient is/was?
Q36 - How emotionally stressful caring for recipient is/was?
Q37b - How much of a financial strain caring for recipient is/was?
Q39 - Do you feel you had a choice in taking on care for recipient?
Choice in taking on care - created
Q32a - Are you currently employed?
Q33 - Have/Were employed any time in last year while caregiving?
Employed while caregiving any point past year - created
N13 - About how many hours a week, on average, do you work? [if employed]
N13b - Currently/were self-employed or own business?
N14 - Does supervisor know you are caring for recipient?
N16a - Flexible work hours are offered to employees in your position [if employed]
N16b - Telecommuting or working from home is offered to employees in your position [if employed]
N16c - Programs like information, referrals, counseling, or an EAP are offered to employees in your position [if employed]
N16d - Paid leave is offered to employees in your position [if employed]
N16e - Paid sick days are offered to employees in your position [if employed]
Count of work benefits or programs - created
Q34a - Went in late, left early, took time off to provide care - As worker/caregiver
Q34b - Took leave of absence - As worker/caregiver
Q34c - Went from working full to part time or cut back hours - As worker/caregiver
Q34d - Turned down promotion - As worker/caregiver
Q34e - Lost any job benefits - As worker/caregiver
Q34f - Gave up working entirely - As worker/caregiver
Q34g - Retired early - As worker/caregiver
Q34h - Received warning about performance or attendance - As worker/caregiver
Count of workplace impacts - created
N15 - Reason for leaving job - coded mention1
N15 - Reason for leaving job - coded mention2
N15 - Reason for leaving job - coded mention3
N15 - Reason for leaving job - coded mention4
N15 - Reason for leaving job - coded mention5
N15 - Reason for leaving job - coded mention6
N17 - Ever been fired from any job as a result of being caregiver for anyone?
N18 - Support ban workplace discrimination against workers with caregiving responsibilities?
Q45a - Ever Requested information about how to get financial help for recipient?
Q45b - Ever Used respite services?
Q45c - Ever Had outside service provide transportation for recipient?
Q45d - Ever Had modifications made in home where recipient lives?
Q45e - Ever Had hc professional ask about needed to care for recipient?
Q45f - Ever Had hc professional ask what you need to take care of self?
N19 - How difficult is/was it to get affordable care services in your recipient's local area?
N20 - Which (policies) do you think would have been helpful - mention1
N20 - Which (policies) do you think would have been helpful - mention2
N20 - Which (policies) do you think would have been helpful - mention3
N20 - Which (policies) do you think would have been helpful - mention4
N20 - Which (policies) do you think would have been helpful - mention5
N20 - Which (policies) do you think would have been helpful - mention6
Q47a - Financial policy most helpful
Q48a - Keeping the person you care for safe at home - need more help/info
Q48b - Managing challenging behaviors, such as wandering - need more help/info
Q48d - Managing incontinence or toileting problems - need more help/info
Q48l - Managing your emotional and physical stress - need more help/info
Q48m - Making end-of-life decisions - need more help/info
Q48n - Finding non-English language educational materials - need more help/info
N21 - Does your recipient have plans in place for future care?
N22 - Do you have your own plans for your future care?
D1 - Caregiver health status
D2 - How would you say caregiving affected your health?
Caregiver marital status - created
D4 - Caregiver served military active duty?
D5 - Did recipient serve in US Armed Forces?
D5b - Did recipient serve before 9-11-01 (if veteran)?
D6 - Child/Grandchild under 18 living in caregiver household at time of caregiving?
Caregiver Education highest grade completed - created
Caregiver Household Income - created
D10 - Agreement to participate in future research on caregivers?
D11 - Agreement to speak with a reporter about this survey?
Has Internet Access in home? - online respondents only
Identifies as Lesbian, Gay, Bisexual, and/or Transgender
Language of Interview
Household Weight - Use for household prevalence only
Population Weight - Main to use for Results and Population Prevalence
Asian Pop weight - apply when looking at Asian caregivers alone
65+ Pop weight - apply when looking at caregivers age 65+ alone
65-74 Pop weight - apply when looking at caregivers age 65-74 alone