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The American Time Use Survey (ATUS) is the Nation's first federally administered, continuous survey on time use in the United States. This multi-year data collection contains information on the amount of time (in minutes) that people spent doing various activities on a given day, including the arts activities, in the years 2003 through 2023.

Data collection for the ATUS began in January 2003. Sample cases for the survey are selected monthly, and interviews are conducted continuously throughout the year. In 2023, approximately 9,000 individuals were interviewed. Estimates are released annually. ATUS sample households are chosen from the households that completed their eighth (final) interview for the Current Population Survey (CPS), the nation's monthly household labor force survey. ATUS sample households are selected to ensure that estimates will be nationally representative. One individual age 15 or over is randomly chosen from each sampled household. This "designated person" is interviewed by telephone once about his or her activities on the day before the interview--the "diary day."

The ATUS Activity Coding Lexicon is a 3-tiered classification system with 17 first-tier categories. Each of the first-tier categories has two additional levels of detail. Respondents' reported activities are assigned 6-digit activity codes based on this classification system.

Additionally, the study provides demographic information--including sex, age, ethnicity, race, education, employment, and children in the household.

IMPORTANT: The 2020 ATUS was greatly affected by the coronavirus (COVID-19) pandemic. Data collection was suspended in 2020 from mid-March to mid-May. ATUS data files for 2020 contain all ATUS data collected in 2020--both before and after data collection was suspended. For more information, please visit BLS's ATUS page.

The weighting method was changed for 2020 to account for the suspension of data collection in early 2020 due to the COVID-19 pandemic. Respondents from 2020 will have missing values for the replicate weights on this data file. The Pandemic Replicate weights file for 2019-20 contains 160 replicate final weights for each ATUS final weight created using the 2020 weighting method. Chapter 7 of the ATUS User's Guide provides more information about the 2020 weighting method.

The Black Rural and Urban Caregivers Mental Health/Functioning data collection includes survey data collected in 2000-2002 from African American females age 65 and older, who provide unpaid care for older African American adults in the St. Louis Metropolitan area and seven rural Missouri counties (Butler, Dunklin, Mississippi, New Madrid, Pemiscot, Scott, and Stoddard).

Because of inadequate recruitment knowledge about rural African American caregivers and persistent reports of challenges when involving African Americans elders in research, this study focused on the involvement of African American rural elders and recruitment of their female informal caregivers in a study of caregivers' well-being and service use. African Americans comprise the largest group of ethnic and racial minority elders aged 65 and older in the U.S. population thus making up one half of all ethnic and racial minority elders. Numerical changes in population size and increasing longevity of older African Americans direct attention to African American informal female caregivers- persons most likely to assist African American elderly with daily living tasks, personal needs, and long-term care. More disabled and chronically ill African American elders portend continuing need from informal or unpaid caregivers for dependent care.

There are two datasets associated with this study, a public-use (da36349-0001) and restricted-use (da36349-0002) version of the same survey data. Both data files contain 521 cases and 1438 variables. However, the restricted file contains continuous as opposed to categorical values for age variables rounded to the nearest whole number.

Over the past two decades, as the proportion of older Americans has increased, so too have instances of elder abuse, including physical, emotional, and sexual abuse; financial exploitation; and caregiver neglect. The most recent national survey estimates show at least 1 in 10 community-residing older adults experience elder abuse each year, which translates to over 7 million Americans annually. Rates of abuse are magnified for older adults with the least financial and social resources, including those with low incomes, living in isolated rural communities, and facing structural barriers such as systemic racism. Emerging research on the COVID-19 pandemic prompts even greater concern for elder abuse: the virus has disproportionately affected older adults, resulting in increased social isolation, physical health impairment, and exposure to COVID-related fraud.

Recognizing the urgent need to develop and rigorously evaluate programs aimed at preventing elder abuse, the US Department of Justice's National Institute of Justice funded a demonstration from 2017 to 2021 during which researchers from the Urban Institute and practitioners at the Phoenix-based Area Agency on Aging, Region One ("the Area Agency") co-developed an elder abuse prevention program in Maricopa County, Arizona, which Urban's team then evaluated through a randomized controlled pilot study. This multiphase demonstration included an initial planning phase and a subsequent pilot study, which is the focus of this report.

The EMPOWER: Building Late-Life Resilience program is a 12-week in-home intervention, with one-hour weekly visits designed to empower community-residing older adults with the resiliency and resources to lead safe and healthy lives throughout the aging process. EMPOWER provides one-on-one assessments, client-centered prevention education, and needs-responsive life skills training embedded in a series of cognitive reframing conversations with an experienced facilitator. The program has eight modules, each of which culminates in an action plan focused on strengthening a client's internal assets and identifying sources of positive social support. Caseworkers facilitate motivational discussions centered on clients' self-identified goals and action planning, with the aim of optimizing clients' home safety, physical health, social connectedness, and emotional and financial well-being.

The Comprehensive Post-Acute Stroke Services (COMPASS) Study is a pragmatic cluster-randomized clinical trial that evaluated the real-world effectiveness of the COMPASS transitional care (COMPASS-TC) model compared to usual care among adult stroke and transient ischemic attack (TIA) patients discharged home between 2016 and 2018. In Phase 1, 40 North Carolina hospital units were randomized 1:1 to the COMPASS-TC intervention or usual care, stratified by stroke patient volume and stroke center certification. In Phase 2, hospitals randomized to usual care crossed over to implement COMPASS-TC, and hospitals randomized to the intervention sustained COMPASS-TC. The intervention was patient-centered and assessed social and functional determinates of health to inform individualized care plans for secondary prevention, recovery, and referrals to services and community-based resources. COMPASS-TC was consistent with Centers for Medicare and Medicaid Services (CMS) TC management reimbursement requirements.

The primary outcome was functional status (Stroke Impact Scale-16; SIS-16) at 90 days; secondary outcomes were mortality, disability, medication adherence, depression, cognition, self-rated health, fatigue, care satisfaction, home blood pressure monitoring, falls, and caregiver strain. Telephone interviewers, blinded to treatment assignment, assessed these outcomes at 90 days.

Dementia is a health problem that can cause memory loss, trouble doing daily tasks, and behavioral problems. Sometimes patients with dementia and their caregivers have goals for patients that their usual medical care doesn't include. For example, caregivers may want to maintain patients' social activities in the community. They may also want patients to continue to live at home.

The research team wanted to test a process called Goal Attainment Scaling, or GAS, to see if patients and their caregivers could identify, set, and meet goals that were important to them. The team also wanted to see if GAS was valuable to patients and their caregivers.

Please note that as of June 2023, Sarah D. Gunnery, PhD is the current Principal Investigator of this data collection.

The Emergence and Evolution of Social Self-Management of Parkinson's Disease study (SocM-PD) is a mixed-method (quantitative-qualitative) prospective cohort study of how people with Parkinson's disease and their primary caregiver (as available) naturalistically manage chronic disease, wellness and social life in their home and community.

Researchers define social self-management as the practices and experiences that ensure personal social comfort while supporting mental and physical well-being. Articulating this model will guide research to identify social factors that are deleterious to or protective of quality of life when living with chronic disease. Parkinson's Disease offers a model for studying the effect of physical disease on the social self management of daily life when physical symptoms affect fundamental social capacities. The overall objective is to understand the emergence and evolution of the trajectories of the self-management of the social lives of people living with Parkinson's disease. The central hypothesis is that expressive capacity predicts systematic change in the pattern of social self-management and quality of life outcomes. Demographic variables include age, gender, ethnicity, income, marital status, education, and employment.

According to the World Health Organization, palliative care is "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psycho-social and spiritual." The goal of the study was to generate comparative effectiveness research evidence to support the delivery of coordinated, community-based palliative care that effectively implements care plans consistent with the goals and preferences of older adults with advanced illness and their caregivers.

This study included a pragmatic, two-arm, multi-site randomized controlled trial of older adults (50+ years) with either poor prognosis cancer or end-stage organ failure who were recruited during an emergency department (ED) visit, along with their informal caregivers, to compare nurse-led telephonic case management to facilitated, outpatient specialty palliative care on: 1) quality of life in patients, 2) loneliness, 3) healthcare use in the 12 months following enrollment, 4) symptom burden, 5) caregiver strain, 6) caregiver quality of life, and 7) bereavement.

The Massachusetts Family Child Care study is a two-year evaluation, conducted by Abt Associates Inc, the Manpower Development Research Corporation (MDRC) and the National Center for Children in Poverty (NCCP), of the impacts of the LearningGames program on providers and children in family child care. LearningGames is designed to train caregivers to stimulate children's cognitive, language, and social-emotional development through a set of 200 simple games that encourage intensive, one-on-one interactions as a platform that allows the adult to engage the child in meaningful conversation, to listen to the child and respond to the child's questions and actions, and to scaffold and build on the child's growing skills at using and understanding language. The goal of LearningGames is to increase the frequency of rich language interactions between caregivers and children due to the importance of oral language development in children's understanding of words and concepts, in their ability to become competent readers, and in their long-term academic success and of the role played by rich language stimulation in promoting children's development. This evaluation of LearningGames examines the effectiveness of the program in changing the behavior of the family child care providers and the developmental outcomes for the children who are cared for by providers trained on LearningGames.

Baseline data were collected in the summer of 2005 with follow up observations taking place in the fall of 2006 and again in the winter of 2007. Of the 55 family child care provider networks in Massachusetts, 16 were sampled, resulting in 1,250 children enrolled in 353 study homes, though the study suffered a heavy overall attrition rate of 58 percent.

The data are provided in four data sets, one file containing data on the providers, a baseline observations file and two annual follow ups. The provider file (2005 Provider Data), includes data on: the provider's years of experience in family child care, their reasons for working as a family child care provider, what they would change about their job, what they believe is their responsibility for the children, their educational background, their age, sex, and race, the languages that they speak at home, the languages that they speak with the children in their care, and the types of materials that they read. Due to the descriptive sensitivity of the variables, this dataset requires a signed user agreement to access. All other datasets are publically available. The observation files include data from several measures: the QUEST Caregiver Rating Scale (subset of items), the Arnett Caregiver Interaction Scale, the revised Snapshot of Activities (from the OMLIT), the Read-Aloud Profile (from the OMLIT), and the TALK.The data include: the amount of time the provider shows interest in what children say or do, whether or not the provider seems to enjoy children, the average number of activities observed, the amount of read-alouds where the provider relates the book to group activities prior to reading the book, and whether or not the provider encourages children to do activities on their own.

The Hispanic EPESE provides data on risk factors for mortality and morbidity in Mexican Americans in order to contrast how these factors operate differently in non-Hispanic White Americans, African Americans, and other major ethnic groups.

The Wave 7 dataset comprises the sixth follow-up of the baseline Hispanic EPESE (HISPANIC ESTABLISHED POPULATIONS FOR THE EPIDEMIOLOGIC STUDIES OF THE ELDERLY, 1993-1994: [ARIZONA, CALIFORNIA, COLORADO, NEW MEXICO, AND TEXAS] [ICPSR 2851]). The baseline Hispanic EPESE collected data on a representative sample of community-dwelling Mexican Americans, aged 65 years and older, residing in the five southwestern states of Arizona, California, Colorado, New Mexico, and Texas.

The public-use data cover demographic characteristics (age, sex, type of Hispanic race, income, education, marital status, number of children, employment, and religion), height, weight, social and physical functioning, chronic conditions, related health problems, health habits, self-reported use of dental, hospital, and nursing home services, and depression. Subsequent follow-ups provide a cross-sectional examination of the predictors of mortality, changes in health outcomes, and institutionalization, and other changes in living arrangements, as well as changes in life situations and quality of life issues.

During this 7th Wave (dataset 1), 2010-2011, re-interviews were conducted either in person or by proxy, with 659 of the original respondents. This Wave also includes 419 re-interviews from the additional sample of Mexican Americans aged 75 years and over with higher average-levels of education than those of the surviving cohort who were added in Wave 5, increasing the total number of respondents to 1,078.

The Wave 7 Informant Interviews dataset (dataset 2) includes data which corresponds to the sixth follow-up of the baseline Hispanic EPESE Wave 7 and included re-interviews with 1,078 Mexican Americans aged 80 years and older. During these interviews, participants were asked to provide the name and contact information of the person they are "closer to" or they "depend on the most for help." These INFORMANTS were contacted and interviewed regarding the health, function, social situation, finances, and general well-being of the ongoing Hispanic EPESE respondents. Information was also collected on the informant's health, function, and caregiver responsibilities and burden. This dataset includes information from 925 informants, more than two-thirds of whom were children of the respective respondents.

This randomized controlled trial tested the efficacy of a virtual support health coaching intervention compared to a health information control group in improving self-care, decreasing stress, and improving coping and health status of informal caregivers of adults with heart failure. A secondary aim was to estimate intervention cost and cost-effectiveness. An exploratory aim was to explore the effect of caregiver outcomes on patient outcomes.

The BRITE study (Brain Injury Rehabilitation: Improving the Transition Experience) was a six-center, 1:1 randomized controlled pragmatic trial with masked outcome assessment that compared the effectiveness of two established approaches to managing transition from inpatient rehabilitation facility discharge to the next phase of care for individuals with moderate-to-severe traumatic brain injury (TBI). The two established transition methods were (1) a standardized version of existing discharge procedures used at all six sites and (2) a standardized remotely-delivered case management approach that extended beyond the point of discharge, based on the protocol used within the Veteran's Health Administration and enhanced with input from patient and family stakeholders. The sample was stratified by site and discharge location (skilled nursing facility vs. discharge to home/community) based on the relatively lower frequency of discharge to facility (22 percent across all six study sites in 2015) and the expectation of high impact of discharge destination on outcomes. When a caregiver was available for an enrolled patient, they were also approached for consent to be surveyed, with some patients having up to two caregivers enrolled to account for changes in primary caregiver.

The following key outcome domains were assessed: (1) ability of patients to participate in the home and community as independently as possible, (2) health-related quality of life, (3) access to appropriate healthcare and reduced emergent or urgent healthcare, and (4) caregiver outcomes. These outcomes were assessed at 3, 6, 9 and 12 months after discharge from inpatient care. Participants were also given the standard TBI Model Systems follow-up assessment one-year post-injury. Types of medical insurance coverage and satisfaction with healthcare were examined at 6 and 12 months post-discharge.

The Longitudinal Study of Generations (LSOG), initiated in 1971, began as a survey of intergenerational relations among 300 three-generation California families with grandparents (then in their sixties), middle-aged parents (then in their early forties), and grandchildren (then aged 15 to 26). The study broadened in 1991 and now includes a fourth generation, the great-grandchildren of these same families.

The LSOG, with a fully elaborated generation-sequential design, allows comparisons of sets of aging parents and children at the same stage of life but during different historical periods. These comparisons make possible the investigation of the effects of social change on inter-generational solidarity or conflict across 35 years and four generations, as well as the effects of social change on the ability of families to buffer stressful life transitions (e.g., aging, divorce and remarriage, higher female labor force participation, changes in work and the economy, and possible weakening of family norms of obligation), and the effects of social change on the transmission of values, resources, and behaviors across generations.

The LSOG contains information on family structure, household composition, affectual solidarity and conflict, values, attitudes, behaviors, role importance, marital relationships, health and fitness, mental health and well-being, caregiving, leisure activities, and life events and concerns. Demographic variables include age, sex, income, employment status, marital status, socioeconomic history, education, religion, ethnicity, and military service.

The codebook for dataset 1 (DS1 Waves 1-7) is over 5000 pages long; due to complications related to the size of this document, the search function within the PDF is not yet enabled. Users seeking specific variables should use the search function within the PI Codebook, or search using the variables search tab/option from the study page.

Children with intellectual and cognitive disabilities often have problems with reasoning, learning, and problem solving. With such challenges, caregivers may have to make choices for their children about their health care and treatments. These children may need such help into young adulthood.

In this study, the research team wanted to find out what matters most to caregivers about their children's care. Caregivers had children with an intellectual or cognitive disability plus a mental health condition, such as depression or anxiety. The team interviewed caregivers about their preferences. Then the team used this information to design a survey. A larger group of caregivers filled out the survey.

In 1995-1996, the MacArthur Midlife Research Network carried out a national survey of over 7,000 Americans aged 25 to 74 [ICPSR 2760]. The purpose of the study was to investigate the role of behavioral, psychological, and social factors in understanding age-related differences in physical and mental health. The study was innovative for its broad scientific scope, its diverse samples (which included siblings of the main sample respondents and a national sample of twin pairs), and its creative use of in-depth assessments in key areas (e.g. daily diary of stressful experiences [ICPSR 3725] and cognitive functioning [ICPSR 3596]) on a subset of participants. A detailed description of the study and findings generated by it are available at: http://www.midus.wisc.edu

With support from the National Institute on Aging, a follow-up of the original Midlife Development in the United States (MIDUS) sample was conducted in 2004 (MIDUS 2 [ICPSR 4652]). The daily stress and cognitive functioning projects were repeated and expanded at MIDUS 2; in addition the protocol was expanded to include biomarkers and neuroscience.

In 2013 a third wave (MIDUS 3) of survey data was collected on longitudinal participants. Data collection for this follow-up wave largely repeated baseline assessments (e.g., phone interview and extensive self-administered questionnaire), with additional questions in selected areas such as economic recession experiences. Cognitive functioning data were also collected at the same time, while data collection for the daily diary, biomarker, and neuroscience projects commenced in 2017.

MIDUS also maintains a Colectica portal, which allows users to interact with variables across waves and create customized subsets. Registration is required.

The MIDUS Refresher Daily Diary Project (aka National Study of Daily Experiences or NSDE) contains data from 782 respondents. The purpose of the Daily Stress Project was to examine how sociodemographic factors, health status, personality characteristics, and genetic endowment modify patterns of change in exposure to day-to-day life stressors as well as physical and emotional reactivity to these stressors.

The primary aims were:

1. To describe how the links between multiple aspects of daily stressors (e.g., frequency, content, severity) and daily physical and emotional well-being change over ten years during adulthood;
2. To examine how sociodemographic factors and personality characteristics influence change in both exposure to as well as changes in physical and emotional reactivity to daily stressors;
3. To investigate how exposure and reactivity to daily stressors correlate with physiological indicators of physical health and predict changes in global health reports; and
4. To explore the relative genetic and environmental influences mediating change in exposure and physical and emotional reactivity to daily stressors throughout adulthood.

The Daily Diary study is comprised of a subsample of the MIDUS (Midlife in the United States) Refresher, a national survey of nearly 3,600 Americans (aged 25 to 75) conducted during 2011-2014. The MIDUS Refresher survey was designed to replenish the original MIDUS 1 baseline cohort and allow the examination of period effects on health (mental and physical) related to the economic recession by comparing the pre-recession MIDUS 1 sample with the post-recession MIDUS Refresher sample. Guiding hypotheses, at the most general level, were that behavioral and psychosocial factors are consequential for health (physical and mental).

Demographic variables in this collection include sex and age.

These data are part of NACJD's Fast Track Release and are distributed as they were received from the data depositor. The files have been zipped by NACJD for release, but not checked or processed except for the removal of direct identifiers. Users should refer to the accompanying readme file for a brief description of the files available with this collection and consult the investigator(s) if further information is needed.

The Safe Start Promising Approaches for Children Exposed to Violence Initiative funded 10 sites to implement and evaluate programs to improve outcomes for children exposed to violence. RAND conducted the national evaluation of these programs, in collaboration with the sites and a national evaluation team, to focus on child-level outcomes. The dataset includes data gathered at the individual family-level at baseline, 6-, 12-months. All families were engaged in experimental or quasi-experimental studies comparing the Safe Start intervention to enhanced services-as-usual, alternative services, a wait-list control group, or a comparable comparison group of families that did not receive Safe Start services. Data sources for the outcome evaluation were primary caregiver interviews, child interviews (for ages 8 and over), and family/child-level service utilization data provided by the Safe Start program staff.

The National Health and Aging Trends Study (NHATS) began in 2011 and fosters research to guide efforts to reduce disability, maximize health and independent functioning, and enhance quality of life at older ages. NHATS aims to provide the basis for understanding trends in late-life functioning, how these differ for various population subgroups, and the economic and social consequences of aging and disability for individuals, families, and society.

NHATS gathers information on a nationally representative sample of Medicare beneficiaries ages 65 and older. The sample is refreshed periodically so that researchers may study national-level disability trends as well as individual trajectories. Annual, in-person interviews collect detailed information on the disablement process and its consequences.

The NHATS interview is guided by a conceptual framework that recognizes physical and cognitive capacity is distinct from the environment in which activities take place. Among the specific content areas included are: the physical, social, technological and service environment, physical and cognitive capacity, use of assistive devices and rehabilitation, help received with daily activities (self-care, household, and medical), participation in valued activities, and wellbeing. A last month of life interview focuses on quality of end of life care. Periodically caregivers of NHATS respondents are interviewed in the supplemental National Study of Caregiving (NSOC). Linkages to Medicare records are also available.

Content was developed by a multidisciplinary team of researchers from the fields of demography, geriatric medicine, epidemiology, health services research, economics, and gerontology. NHATS is being led by the Johns Hopkins University Bloomberg School of Public Health in collaboration with the University of Michigan, with data collection by Westat, and support from the National Institute on Aging.

The National Long-Term Care Survey (NLTCS) has completed six waves, nominally at five-year intervals, 1982, 1984, 1989, 1994, 1999, and 2004. The NLTCS is a nationally-representative sample both of the community and of institutionalized populations and is longitudinal in that sample persons join the survey once they reach 65 years of age and stay in the survey until they either die or are lost to follow-up. At each wave, a screener questionnaire is administered to the sample which divides the sample into three parts: the non-disabled (frequently called screen-outs), the disabled but living in the community, and the disabled living in an institution. About 5,000 people die between waves and are replaced by a sample of about that size of people who have become age 65 since the prior wave. Because of budget considerations it usually has not been possible to continue the entire non-disabled sample into the next wave. Instead a sample of the non-disabled is drawn to keep the total sample size for a wave at about 20,000. One of the interesting and useful features of the NLTCS is that data are collected on help that the sample person receives from informal caregivers.

The NLTCS is a very data-rich resource with many components, including disability measures, medical conditions, attained education levels, and income. Numerous papers have used it as a source of data addressing a wide variety of topics related to aging and disability.

Ancillary surveys have been added to measure other characteristics of the 65 and older population, to include a Caregiver Survey to acquire data on informal caregivers themselves (done in 1989, 1999, and 2004) and Next-of-Kin (NOK) surveys administered to sample persons who had died between 1982 and 1984 and again between 1994 and 1999. The sample has been frequently supplemented to compensate for low representation in some survey components, in particular the 75 years and older and 95 years and older components. In 1999 physical specimens were drawn from a sample of persons who responded to the survey. These physical specimens (blood where possible, alternatively a buccal wash) are subject to a genetic analysis and, in the case of blood, to a panel of proteins believed to be particularly important to health.

NLTCS Survey Data

Survey data are available in ASCII and SAS format.

The Analytic Data File, a file of derived variables for all waves of the survey incorporates correction factors and consistency checking. The Analytic Data File covers all waves of the survey and is available in both ASCII and SAS formats. Final versions of data for all waves, up to and including 1999 and a beta version for 2004, have been released and are supported by documentation.