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Improving Self-Care of Informal Caregivers of Adults with Heart Failure, United States, 2019-2024 (ICPSR 39524)

Released/updated on: 2026-01-20
Geographic coverage: United States
Time period: 2019-01-01--2024-12-31

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.

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Emergency Medicine Palliative Care Access (EMPallA), United States, 2018-2022 (ICPSR 39115)

Released/updated on: 2025-10-28
Geographic coverage: United States, Illinois, Massachusetts, Connecticut, Ohio, California, Florida, New York (state), New Jersey, Michigan
Time period: 2018-04-16--2022-08-14

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.

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Improving Transition from Acute to Post-Acute Care following Traumatic Brain Injury (BRITE), United States, 2018-2022 (ICPSR 39094)

Released/updated on: 2025-09-17
Geographic coverage: United States
Time period: 2018-01-01--2022-12-31

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.

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Chronic Illness and Caregiving, 2000: [United States] (ICPSR 3402)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 2000-01-01--2000-12-31
The objective of this survey, which interviewed individuals from the general public, chronically ill persons, and informal caregivers, was threefold: (1) to assess public awareness of chronic care issues and the level of support for chronic care policy initiatives, (2) to examine experiences and needs of chronically ill Americans concerning health care and other assistance, and (3) to evaluate experiences and needs of informal caregivers. Questions to the general public addressed awareness of the availability of supportive and housing services for the chronically ill, knowledge about coverage for long-term care, concerns about the future of the chronic care delivery system, support for policy initiatives such as tax credits for the chronically ill and caregivers, and support for a policy that would ensure pharmaceutical coverage in Medicare. Chronically ill interviewees responded to questions about access to and experience with chronic care and other health care services, experiences with and needs for clinical services coordination, experiences with and needs for social supports and interventions, and adjustment skills and knowledge (e.g., what were their needs for learning how to live with chronic conditions). Questions for informal caregivers focused on experiences with caregiving (e.g., for whom they provided care, how many hours they devoted to caregiving per week, and living arrangements), balance between caregiving and other areas of their lives, experiences with and needs for respite care, and availability of social supports for caregivers.
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National Poll on Healthy Aging (NPHA), [United States], April 2017 (ICPSR 37305)

Released/updated on: 2019-05-29
Geographic coverage: United States
Time period: 2017-04-01--2017-04-30

By tapping into the perspectives of older adults and their caregivers, the University of Michigan National Poll on Healthy Aging (NPHA) helps inform the public, health care providers, policymakers, and advocates on issues related to health, health care and health policy affecting Americans 50 years of age and older.

The poll is designed as a recurring, nationally representative household survey of U.S. adults, which allows assessment of issues in a timely fashion.

Launched in spring 2017, the NPHA is modeled after the highly successful University of Michigan C.S. Mott Children's Hospital National Poll on Children's Health. The NPHA grew out of a strong interest in aging-related issues among many members of the University of Michigan Institute for Healthcare Policy and Innovation (IHPI), which brings together more than 600 faculty who study health, health care and the impacts of health policy. IHPI directs the poll which is sponsored by AARP and Michigan Medicine, the University of Michigan academic medical center.

More waves of the NPHA data can be found on the NACDA-OAR site:

  • National Poll on Healthy Aging (NPHA), [United States], October 2017
  • National Poll on Healthy Aging (NPHA), [United States], March 2018
  • National Poll on Healthy Aging (NPHA), [United States], October 2018
  • National Poll on Healthy Aging (NPHA), [United States], May 2019

The various waves of NPHA represent separate samples of participants and cannot be joined or merged.

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Eurobarometer 67.3: Health Care Service, Undeclared Work, EU Relations With Its Neighbor Countries, and Development Aid, May-June 2007 (ICPSR 21521)

Released/updated on: 2010-06-29
Geographic coverage: Cyprus, Portugal, Global, Malta, Greece, Netherlands, Sweden, Austria, Latvia, Luxembourg, Ireland, Poland, Slovenia, Slovakia, France, Bulgaria, Lithuania, Croatia, Romania, Hungary, Europe, United Kingdom, Spain, Czech Republic, Turkey, Belgium, Finland, Denmark, Italy, Germany, Estonia
Time period: 2007-05-25--2007-06-27
This round of Eurobarometer surveys diverged from the Standard Eurobarometer measure and queried respondents on (1) health, long term care, and the dependent elderly (2) undeclared work, (3) the European Union's (EU) relationship with neighboring countries, and development aid, and (4) euro coins. For the first special topic, respondents were asked to assess their health status, life expectancy, whether they have significant impairment in participating in certain activities of daily living, and their experience with health care services, including access and cost. In addition, respondents were asked to identify persons in need of long term care, to provide their opinion and experiences in the planning and provision of long term care for the elderly, including the health care costs, and to evaluate the risk that dependent elders are being exposed to abuse and need for future personal care requirements. The second special topic, undeclared work, respondents were asked to identify their knowledge of persons who work without declaring income to tax or social security institutions, and the characteristics and reasons of those who would most likely do so. Respondents also evaluated the risk of being detected in not declaring income for which supplementary bills or fines may be issued, and sanctions expected to be implemented by authorities in response to a certain amount of income that is undeclared. The survey also queried respondents about services and goods acquired from an individual or group associated with undeclared work, and undeclared payment received from their employer and portion of gross yearly income this comprises, and their opinion about these practices. In addition, respondents identified the type and frequency of undeclared work in which they participated, amount of income received for this work, and the reasons this work was completed and for whom, and consequences in working undeclared. In addition, respondents assessed the legitimacy of certain behaviors pertaining to public and private economic transactions. As the next special topic, the survey examines respondents' knowledge of which countries currently plan to join the EU, which countries neighbor the EU, the European Neighborhood policy, and obtaining information about developmental aid. Pertaining to this policy, respondents were asked to assess the relationship between the EU and neighboring countries, and the importance of issues which would affect this relationship, including providing economic assistance. Respondents provided their opinion in regard to developmental aid the EU provides to the poor, the efficiency of providing aid through each member state or the European Commission, which donor provides the most aid to developing countries, and priorities for the EU in disbursing developmental aid. For the final special topic, respondents were asked about their knowledge of the sides of euro coins, to identify the genuineness and value of particular coins, to describe their experiences in accepting a fake, or a non-euro coin or coin-like object, and their opinion in regard to the national sides of the coins which differ among each country in the EU. Demographic and other background information includes respondent's age, estimate of life expectancy, gender, nationality, origin of birth (personal and parental), marital status, left-to-right political self-placement, occupation, age when stopped full-time education, household composition, ownership of a fixed or a mobile telephone and other durable goods, type and size of locality, region of residence, and language of interview (select countries). Respondents were also queried about their family size, including the number of children birthed, ages of their mother and father, and the housing situation for their child or parent, including distance from respondent. The survey also collected information such as the job sector in which the respondent currently works, number employed by respondent's employer, gross income, and hours worked per week at formal employment.
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Work and Family Life Study [United States] (ICPSR 26641)

Released/updated on: 2010-01-26
Geographic coverage: United States
Time period: 1980-01-01--1980-12-31, 1983-01-01--1983-12-31, 1988-01-01--1988-12-31, 1992-01-01--1994-12-31, 1997-01-01--1997-12-31, 2000-01-01--2000-12-31

Formerly titled Marital Instability Over the Life Course (MIOLC -- ICPSR 3812), the Work and Family Life Study (WFLS) is a follow-up to the MIOLC. The MIOLC examined the causes of marital instability throughout the life course, and contains 6 waves of data collected between 1980 and 2000, which were gathered from married respondents who were between the ages of 19 and 55.

The Work and Family Life Study provides data for use in assessing: changes in marital quality between 1980 and 2000; the effects of family-of-origin characteristics and marital history on the physical and psychological health of respondents; and evaluating sample attrition, factors which lead to attrition, and attrition bias.

The WFLS collected new cross-sectional information (Part 2 -- Public Use Cross Section, N = 2,189) on married people 55 years of age and younger, using the same sampling procedures and interview questions that were used in the 1980 wave of the MIOLC. The Work and Family Life Study's Public Use Cross Section is the latest addition to the data collections. This new Public Use Cross Section studies the effects of wives' participation in the labor force on marriage and marital instability.

Also provided in this collection are the Public Use All Waves (Part 1, N = 2,034) and the Public Use Panel Wave 6 (Part 3, N = 1,031). The Public Use All Waves contains information from Waves I through VI, which were collected in 1980, 1983, 1987, 1992-1994, 1997, and 2000. Among the variables included in all six waves are age, sex, educational attainment, marital status and history, attitude toward divorce, number of children, religious affiliation, and income level. The Public Use Panel Wave 6 contains data on persons who only responded to wave 6 of the study.

Unique to this data collection, the Public Use Comparison file (Part 4, N = 11,741) contains information on respondents who would have been between the ages of 19 and 55 in 1980, married, and living with their spouse. These data evaluate potential bias from sample attrition in the panel study. The Comparison Sample is a special purpose sample and does not generalize to a normally defined population of ever married persons.

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Marital Instability Over the Life Course [United States]: A Six-Wave Panel Study, 1980, 1983, 1988, 1992-1994, 1997, 2000 (ICPSR 3812)

Released/updated on: 2010-01-21
Geographic coverage: United States
Time period: 1980-01-01--1980-12-31, 1983-01-01--1983-12-31, 1988-01-01--1988-12-31, 1992-01-01--1994-12-31, 1997-01-01--1997-12-31, 2000-01-01--2000-12-31
To examine the causes of marital instability throughout the life course, six waves of data were collected between 1980 and 2000 from married individuals who were between the ages of 18 and 55 in 1980. Information collected in 1980 (Wave I) focused on the effects of wives' participation in the labor force on marriage and marital instability. Measures predicting marital instability and divorce and assessing marital quality were developed. Variables include information on earnings, commitment to work, hours worked, and occupational status. The focus of Wave II, conducted in 1983, was to link changes in factors such as economic resources, wife's employment, presence of children, marital satisfaction, life goals, and health to actions intended to dissolve a marriage, such as divorce and permanent separation. Information on adjustment to marital dissolution, relationship with in-laws, size of home, parents' employment, use of free time, club membership, child-care arrangements, and responsibility for chores was gathered. Wave III, collected in 1988, further examined the impact of changes in employment, economics, and health on marital relationships. Questions were asked about divorce and remarriage, investment of energy and resource use in the care of aging parents and dependent offspring, asset value, awareness of aging, mental health issues, and history of disease. In 1992, Wave IV data were collected to look at changes in employment, economics, and health. Questions were asked about retirement issues, family structure, and the impact of caring for aging parents while at the same time caring for dependent offspring. Data were also collected in 1992 and 1994 from adult offspring who were living in the household in 1980 and had reached age 19 by 1992, thus providing parallel measures with their parents regarding the quality of parent-child relationships, attitudes, and support along with exploring the impact of childhood experiences on the transition to adult life. In 1997, the fifth wave was collected and interviews were conducted with a second sample of adult offspring (N=202) along with second interviews of offspring selected in 1992 (N=606). Wave V also examined the relationship between marital quality and stability and how it relates to changes in marital quality later in life. In 2000, Wave VI data were collected. Included with the adult panel was a panel obtained from the offspring who participated in 1992 or 1997, a replicate of the original cross-section study completed in 1980 (comprised of currently married persons between the ages of 19 and 55), along with a comparison sample made up of persons who were married in 1980 and were between 39 and 75 years old. The investigators examined whether there were changes in marital quality between 1980 and 2000, identified factors that might have accounted for these changes, and sought to determine their impact on the health and longevity of older persons. New questions included in Wave VI covered whether the respondent thought he/she had an organized lifestyle, alcohol and tobacco use, health problems, physical limitations, and mattering (the level of concern expressed for and received from spouse). Among the variables included in all six waves are age, sex, educational attainment, marital status and history, attitude toward divorce, number of children, religious affiliation, and income level. The Work and Family Life Study (ICPSR 26641) was conducted in 2000 as a follow-up to the Marital Instability Over the Life Course Study. Included in the Work and Family Life Study is a new cross-section of 2,100 married people 55 years of age and younger. Additionally, the Work and Family Life Study contains a Comparison Sample comprised of 1,600 additional respondents. The purpose of this Comparison Sample is to assess potential bias due to sample attrition in the panel study.
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Do Older Adults Know Their Spouses' End-of-Life Treatment Preferences? (ICPSR 25701)

Released/updated on: 2009-06-23
Geographic coverage: United States
When terminally ill patients become mentally incapacitated, their surrogates often make treatment decisions in collaboration with health care providers. The authors examined how surrogates' errors in reporting their spouses' preferences are affected by their gender, status as durable power of attorney for health care (DPAHC), whether they and their spouses discussed end-of-life preferences, and their spouses' health status. Structural equation models were applied to data from married couples in their mid-60s from the 2004 wave of the Wisconsin Longitudinal Study. Surrogates reported their spouses' preferences incorrectly 13 percent and 26 percent of the time in end-of-life scenarios involving cognitive impairment and physical pain, respectively. Surrogates projected their own preferences onto their spouses'. Similar patterns emerged regardless of surrogate gender and status as DPAHC, marital discussions about end-of-life preferences, or spousal health status. Implications for the process of surrogate decision-making and for future research are discussed.
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Resources for Enhancing Alzheimer's Caregiver Health (REACH II), 2001-2004 (ICPSR 4354)

Released/updated on: 2006-10-27
Geographic coverage: Palo Alto, United States, Tennessee, Memphis, California, Alabama, Florida, Birmingham, Philadelphia, Pennsylvania, Miami
Time period: 2001-01-01--2004-12-31
Built upon the findings of RESOURCES FOR ENHANCING ALZHEIMER'S CAREGIVER HEALTH, 1996-2001, BASELINE AND FOLLOW-UP DATA [ICPSR 3678], REACH II designed and tested a single multi-component intervention among family caregivers of persons with Alzheimer's disease or related disorders. The overall objectives were (1) to identify and reduce modifiable risk factors among diverse family caregivers of patients with Alzheimer's Disease or a related disorder, (2) to enhance the quality of care provided to the care recipients, and (3) to enhance the well-being of the caregivers. REACH II is the first project to simultaneously test a comprehensive caregiver intervention in three distinct racial/ethnic groups: Hispanic/Latino, Black/African-American, and White/Caucasian. The intervention was based on a risk-appraisal approach in which five areas of risk--depression, burden, self-care, social support, and patient problem behaviors--that are central to caregiver well-being and quality of life were matched to corresponding intervention components. These components included education, skills to manage troublesome care-recipient behaviors, social support, cognitive strategies for reframing negative emotional responses, and strategies for enhancing healthy behaviors and managing stress. Consistent with this approach, the primary outcome was a multivariate quality of life indicator that assessed caregiver depression, burden, self-care, social support, and patient problem behaviors. Two hallmarks of caregiver intervention studies--caregiver clinical depression and patient institutionalization--were assessed as secondary outcomes. The dataset names listed in this collection include the shortened name of the form administered.
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Resources for Enhancing Alzheimer's Caregiver Health, 1996-2001, Baseline and Follow-Up Data (ICPSR 3678)

Released/updated on: 2006-09-26
Geographic coverage: United States, Tennessee, California, Alabama, Florida, Birmingham, Pennsylvania, Miami, Palo Alto, Massachusetts, Memphis, Philadelphia, Boston
Time period: 1996-09-01--2001-02-28
Resources for Enhancing Alzheimer's Caregiver Health (REACH) was established in 1995 to conduct social and behavioral research on interventions designed to enhance family caregiving, particularly in minority families, for persons with Alzheimer's Disease and related disorders. Baseline data (ICPSR 3253) were collected through randomized clinical trials at six sites: University of Alabama-Birmingham, The Research and Training Institute of the Hebrew Rehabilitation Center for Aged in Boston, University of Tennessee-Memphis, University of Miami, Veterans Affairs Palo Alto Health Care System and Stanford University, and Thomas Jefferson University in Philadelphia. Interventions such as psychoeducational support groups, behavioral skills training programs, family-based systems interventions, environmental modifications, and technological computer-based information and communication services varied by site. This collection contains baseline data along with follow-up data at 6-, 12-, and 18-month intervals from each site with focus on the impact of the various intervention strategies on psychological distress, health status, health practices, and health care utilization. Also included are follow-up batteries, transition batteries (placement, bereavement, discontinued), and data reporting missed visits. Parts 1 through 5 contain screening data and responses to a short mental status questionnaire. Parts 6 through 34 contain baseline data along with follow-up data at 6, 12, and 18-month intervals and cover activities of daily living, anxiety, and caregiver health and health behaviors along with sociodemographic information. Also included are care recipient medications and sociodemographic information. Parts 35 through 40 contain tracking data and also include an examination of interventions.
Curated

Resources for Enhancing Alzheimer's Caregiver Health, 1996-2001 (ICPSR 3253)

Released/updated on: 2006-03-30
Geographic coverage: United States, Tennessee, California, Alabama, Florida, Birmingham, Pennsylvania, Miami, Palo Alto, Massachusetts, Memphis, Philadelphia, Boston
Time period: 1996-09-01--2001-02-28
Resources for Enhancing Alzheimer's Caregiver Health (REACH) was established in 1995 to conduct social and behavioral research on interventions designed to enhance family caregiving, particularly in minority families, for persons with Alzheimer's Disease and related disorders. Data were collected through randomized clinical trials at six sites: University of Alabama--Birmingham, the Research and Training Institute of the Hebrew Rehabilitation Center for Aged in Boston, University of Tennessee--Memphis, University of Miami, Veterans Affairs Palo Alto Health Care System and Stanford University, and Thomas Jefferson University in Philadelphia. Interventions studied included psychoeducational support groups, behavioral skills training programs, family-based systems interventions, environmental modifications, and technological computer-based information and communication services. Although interventions varied by site, all sites collected the same data at the same time intervals. The impact of the various intervention strategies on psychological distress, health status, health practices, and health care utilization was assessed. Parts 1 through 5 contain screening data and a short mental status questionnaire. Parts 6 through 24 contain baseline data and cover activities of daily living, anxiety, and caregiver health and behaviors along with sociodemographic information. Also included are care recipient medications and sociodemographic information. Parts 25 and 26 contain tracking data and also include an examination of interventions.
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National Medical Expenditure Survey, 1987: Household Survey, Care Giver and Care Receiver Supplements [Research File 31R] (ICPSR 6649)

Released/updated on: 2006-03-30
Geographic coverage: United States
Time period: 1987-01-01--1987-12-31
The National Medical Expenditure Survey (NMES) series provides information on health expenditures by or on behalf of families and individuals, the financing of these expenditures, and each person's use of services. The Household Survey was fielded over four rounds of personal and telephone interviews at four-month intervals. Baseline data on household composition, employment, and insurance characteristics were updated each quarter, and information on all uses of and expenditures for health care services and sources of payment was obtained. Research File 31R provides information collected from two supplements administered as part of the Household Survey: the Care Receiver Supplement and the Care Giver Supplement. The Care Receiver Supplement (Part 2) was given to those Round 2 persons who answered positively to receiving help in at least one of three areas: assistance with Activities of Daily Living (ADL), assistance with Instrumental ADL (IADL), or financial assistance. This supplement asked for information on the care receiver's living situation, and amounts and types of assistance. The Care Giver Supplement (Parts 3 and 4) was administered in Rounds 2 and 5 to persons identified in the Long-Term Care Supplement (see ICPSR 9675) as being the main care-givers for other members of the dwelling unit who had difficulty with one or more ADLs or IADLs. This supplement obtained information on the impact of a caregiver's responsibilities on his or her employment, income, and physical and mental health, as well as the extent of the impaired person's psychological and social disabilities. Part 1, Person-Level Summary Data, supplies information such as age, sex, race, marital status, and education of the respondents.
Curated

Marital Instability Over the Life Course [United States]: A Five-Wave Panel Study, 1980, 1983, 1988, 1992-1994, 1997 (ICPSR 2163)

Released/updated on: 2001-09-20
Geographic coverage: United States
Time period: 1980-01-01--1980-12-31, 1983-01-01--1983-12-31, 1988-01-01--1988-12-31, 1992-01-01--1994-12-31, 1997-01-01--1997-12-31
To examine the causes of marital instability throughout the life course, five waves of data were collected between 1980 and 1997 from married individuals who were between the ages of 18 and 55 in 1980. Information collected in 1980 (Wave I) focused on the effects of wives' participation in the labor force on marriage and marital instability. Measures predicting marital instability and divorce and assessing marital quality were developed. Variables include information on earnings, commitment to work, hours worked, and occupational status. The focus of Wave II, conducted in 1983, was to link changes in factors such as economic resources, wife's employment, presence of children, marital satisfaction, life goals, and health to actions intended to dissolve a marriage, such as divorce and permanent separation. Information on adjustment to marital dissolution, relationship with in-laws, size of home, parents' employment, use of free time, club membership, child-care arrangements, and responsibility for chores was gathered. Wave III, collected in 1988, further examined the impact of changes in employment, economics, and health on marital relationships. Questions were asked about divorce and remarriage, investment of energy and resource use in the care of aging parents and dependent offspring, asset value, awareness of aging, mental health issues, and history of disease. In 1992, a fourth wave of data was collected to look at changes in employment, economics, and health. Questions were asked about retirement issues, family structure, and the impact of caring for aging parents while at the same time caring for dependent offspring. Data were also collected in 1992 and 1994 from adult offspring who were living in the household in 1980 and had reached age 19 by 1992, thus providing parallel measures with their parents regarding the quality of parent-child relationships, attitudes, and support along with exploring the impact of childhood experiences on the transition to adult life. In 1997, the fifth wave was collected and interviews were conducted with a second sample of adult offspring (N=202) along with second interviews of offspring selected in 1992 (N=606). Wave 5 also examines the relationship between marital quality and stability and how it relates to changes in marital quality later in life. Among the variables included in all five waves are age, sex, educational attainment, marital status and history, attitude toward divorce, number of children, religious affiliation, and income level.
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