Health and Medical Care Archive

This study is maintained and distributed by the Health and Medical Care Archive (HMCA). HMCA is the official data archive of the Robert Wood Johnson Foundation.

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

Principal Investigator(s): Thamer, Mae, Johns Hopkins University. School of Public Health


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.

Access Notes

  • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.


Dataset - Download All Files (13.461 MB)

Study Description


Thamer, Mae. CHRONIC ILLNESS AND CAREGIVING, 2000: [UNITED STATES]. ICPSR03402-v1. Youngstown, OH, Binghamton, NY, and New York, NY: Harris Interactive, Inc. [producers], 2000. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2006-05-04.

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This study was funded by:

  • Robert Wood Johnson Foundation (37084)

Scope of Study

Subject Terms:    caregiver burden, caregivers, chronic illnesses, health care, long term care, long term care insurance, Medicare, needs assessment, policies and procedures, respite care

Geographic Coverage:    United States

Time Period:   

  • 2000

Date of Collection:   

  • 2000

Universe:    Persons aged 18 and older in the United States.

Data Type(s):    survey data

Data Collection Notes:

The data map is provided by ICPSR as an ASCII text file and the codebook and frequencies are provided by ICPSR as a Portable Document Format (PDF) file.


Sample:    A national cross-section of adults was selected. Persons with a chronic illness and adults who provided informal caregiving services were oversampled. In all, interviews were conducted with 1,663 subjects, of which 680 were neither chronically ill nor caregivers, 189 were caregivers but not chronically ill, 559 were chronically ill but not caregivers, and 235 were chronically ill caregivers.

Data Source:

telephone interview


Original ICPSR Release:   2002-05-14

Version History:

  • 2006-05-04 An ICPSR Processing Note was added to the codebook concerning variable Q410 (Caregiver/Chronically Ill) and errors in the methodology section of the codebook. The study description was revised accordingly.

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