National Surveys Containing Information on Caregiving
| Survey Name: Sponsor | Years | Information about Caregiving | Inclusion in or Exclusion from Analysis | |
|---|---|---|---|---|
| Medical Expenditure Panel Survey (MEPS): Agency for Health Care Research and Quality (AHRQ) | 1997 | The 1997 MEPS Household Component supplemental public-use files collected information from individuals of all ages in MEPS with certain limitations on (1) care provided by other household members and (2) individuals outside the household who could provide care. | Excluded: Never used to generate estimate of caregiving | |
| Medicare Current Beneficiaries Survey (MCBS): Center for Medicare and Medicaid Services (CMS) | 1991–current | The MCBS's health status and functioning section contains basic information about those persons who helped the primary respondent (Medicare beneficiary) with ADLs, IADLs, Medicare insurance decisions, and/or Medicare paperwork. Information is collected about these tasks and the helper's relationship to the respondent. | Excluded: Never used to generate estimate of caregiving | |
| Longitudinal Study on Aging (LSOA): National Center for Health Statistics (NCHS) and National Institute of Aging (NIA) | Cohort identified in 1984 | The original SOA (Study on Aging) supplement to the NHIS collected information on a cohort of individuals aged 55+. The supplement contains information about individuals who helped the respondent, basic information about the amount and type of assistance provided, and the respondent's satisfaction with the care provided. A follow-up was conducted in 1990. | Excluded: Survey cohort identified before 1985 | |
| Health and Retirement Survey/Asset and Health Dynamics among the Oldest Old (HRS): National Institute on Aging (NIA) | 1992–Current | The HRS's functional limitations section collects information from the entire cohort of older HRS respondents (65+) on ADL and IADL limitations and the individuals who assist with these limitations. Basic information is collected on the relationship of the helper and the respondent, as well as the type and amount of assistance provided. | Included | |
| National Long Term Care Survey (NLTCS): National Institute on | Community | 1982–2004 | The NLTCS collects information on chronically disabled older adults in the U.S. The community sample includes individuals 65+ who have been disabled (ADL or IADL limitation) for at least three months. | Included |
| Aging (NIA) | Informal Caregiver Supplement | 1982–2004 | This is a supplemental survey for the NLTCS community survey. The primary caregiver identified in the community survey was interviewed and detailed information about the caregiver and caregiving situation was collected. | Included |
| National Survey of Families and Households (NSFH): National Institute of Child Health and Human Development (NICHD) and National Institute of Aging (NIA) | Cohort identified in 1988 | This longitudinal survey follows an original cohort of families from the first wave of the study in 1988 and their descendants in two subsequent waves, the most recent in 2001/2002. Each wave asked respondents about personal care they provide and receive from individuals both inside and outside the household. The survey collects basic information about the amount and type of care provided and received. | Included | |
| Caregiving in the U.S.: AARP and National Alliance for Caregiving (NAC) | 1997, 2003 | This cross-sectional, national telephone survey of households in the U.S. collects information about care provided by household members for a health problem in other individuals of any age. The survey collects detailed information about the caregiver and the impact of caregiving. | Included | |
| Behavioral Risk Factor Surveillance System Survey (BRFSS): Centers for Disease Control and Prevention (CDC) | 2000 | The BRFSS is an annual cross-sectional national survey of households in the U.S. In 2000, two questions were added to the survey about caregiving to individuals over the age of 60. Individual states have the option to supplement these two questions with more in-depth questions about caregiving. | Included | |
| Survey of Income and Program Participation (SIPP): U.S. Census Bureau | Adult Disability Module | 1996, 2001, 2004 | The SIPP is a cross-sectional survey of U.S. households and collects information about income and participation in government programs. The Adult Disability Module collects information about functional limitations and assistance provided by family and friends. Basic information is collected on the relationship of the helper and the respondent, as well as the type of assistance provided. | Included |
| Informal Caregiving Module | 1996, 2001, 2004 | This SIPP module asks individuals in the general community about the assistance they provide to disabled adults inside and outside the home, as well as basic information about the amount and type of care provided in households. | Included | |
| Survey of Long-Term Care from the Caregivers Perspective: Kaiser Family Foundation (KFF), Harvard University, and others | 1998 | This small national telephone survey collected information on caregiving of individuals of any age, as well as detailed information about the type and amount of care provided and its burdens and rewards. | Excluded owing to lack of information about survey design | |
| American Time Use Survey (ATUS): U.S. Department of Labor | 2003–2006 | The ATUS measures the amount of time people spend on various activities, including “helping activities.” Respondents use time diaries to record how much time they spend caring for both adults and children in the household, including providing physical care or obtaining medical services for older adults living in the household. | Excluded: Never used to generate estimate of caregiving | |
| Panel Study of Income Dynamics: National Science Foundation, U.S. Department of Commerce, National Institute on Aging | 1991, 1993 | The PSID collects information about families and income. The Parent Health Supplement collects information from adult children caring for parents 70+ who need assistance with personal tasks. The Health Care Burden Supplement collects information from families on the health status of older adults and the impact (primarily financial) on their families. | Excluded: Never used to generate estimate of caregiving | |
| National Survey of Self-Care and Aging: National Institute on Aging | 1993 | This survey of older individuals (65+) collected information about self-care behaviors regarding activities of daily living and chronic condition management. Although the focus is on self-care, the amount and type of assistance provided by others also are recorded. In addition, this survey asks about the amount and type of care provided by older adults to other individuals. | Excluded: Never used to generate estimate of caregiving | |
Note: For the literature review, we used scientific journal databases, focused on medical and social science (PubMed, Social Science Citation Index, and PsychInfo). The searches used the terms caregiver, caregiving, or informal care in combination with the name of the survey. We then reviewed the results of the search to determine whether the study generated an estimate of caregiving of older adults. To identify those government reports that used data from the selected surveys, we used the U.S. DHHS's Office of the Assistant Secretary for Planning and Evaluation website and the National Family Caregiver Support Program website. We used the same search terms to find articles and reports and then again to find more articles and reports.