Chronic Illness and Caregiving, 2000: [United States]

Resource Type
Dataset : survey data
  • Thamer, Mae (Johns Hopkins University. School of Public Health)
Other Title
  • Version 1 (Subtitle)
Publication Date
Funding Reference
  • Robert Wood Johnson Foundation
Free Keywords
caregiver burden; caregivers; chronic illnesses; health care; long term care; long term care insurance; Medicare; needs assessment; policies and procedures; respite care
  • Abstract

    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.
  • Table of Contents


    • DS1: Dataset
Temporal Coverage
  • Time period: 2000
  • Collection date: 2000
Geographic Coverage
  • United States
Sampled Universe
Persons aged 18 and older in the United States.
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.
Collection Mode
  • 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.

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. Funding insitution(s): Robert Wood Johnson Foundation (37084).
This study is freely available to the general public via web download.
Alternative Identifiers
  • 3402 (Type: ICPSR Study Number)
  • Harvey, Idethia Shevon. Perceptions of social support among mid-to late-life female caregivers and women with chronic conditions. 141st APHA Annual Meeting .Boston, MA. 2013.
  • Keith, Pat M.. Health care hassles of caregivers to the chronically ill. International Journal of Aging and Human Development.69, (1), 1-16.2009.
    • ID: 10.2190/AG.69.1.a (DOI)
  • Veazie, P.J.. Projection, stereotyping, and the perception of chronic medical conditions. Chronic lllness.2, (4), 303-310.2006.
    • ID: 10.1179/174592006X157535 (DOI)
  • Anderson, Gerard F.. Physician, public, and policymaker perspectives on chronic conditions. Archives of Internal Medicine.163, (4), 437-442.2003.
    • ID: 10.1001/archinte.163.4.437 (DOI)
  • Thamer, Mae, Hwang, Wenke, Anderson, Gerard F.. Public support for policies that would help people with chronic conditions. Health Affairs.21, (4), 264-270.2002.
    • ID: 10.1377/hlthaff.21.4.264 (DOI)
  • Anderson, Gerard, Knickman, James R.. Changing the chronic care system to meet people’s needs. Health Affairs.20, (6), 146-160.2001.
    • ID: 10.1377/hlthaff.20.6.146 (DOI)

Update Metadata: 2015-08-05 | Issue Number: 6 | Registration Date: 2015-06-15