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Surveillance of Informal Caregivers

DeFries E, Andresen EA. Surveillance of Informal Caregivers. Poster session presented at: Society for Epidemiologic Research Annual Meeting; 2007 Jun 20; Boston, MA.


Approximately 53.4 million Americans provide informal care to persons with disabilities or chronic conditions. National caregiving surveys have advanced our understanding of the health effects of providing informal care, and they have provided the framework for asking questions and creating informative measures, e.g., a burden scale. However, no brief survey has been available to capture surveillance caregiving data. We developed and test a 10-item Caregiver Module for use in the Behavioral Risk Factor Surveillance System (BRFSS) following a review of literature and measures, and a national stakeholders meeting. The Caregiver Module was pilot-tested during the 2005 North Carolina BRFSS. In addition, a 20-minute in-depth follow-back interview was also asked of BRFSS caregiver respondents. The Caregiver Module screened 5,859 North Carolina respondents and 895 (15.5%, 95% CI: 14.2, 16.9) reported being caregivers for children or adults. 374 caregivers also participated in the follow-back interview. There were no problems with questions in terms of missing responses and the brief burden measure correlated well with the detailed scale from the follow-back interview (r = 0.61). Results: Each state has plans for dissemination of results and use of these data in policy and program planning, which will be discussed in detail during the session. Hawaii’s primary interests include the caregiver-care recipient living arrangement and issues relating to living will, power of attorney, and long-term care insurance. Kansas is interested in whether the respondent is the primary caregiver and how that influences health outcomes. Washington will gather information on caregivers of relatives’ children in addition to caregivers of persons with a disability or health condition. Washington will also ask about persons with memory loss or a condition like Alzheimer’s disease, primary caregiving, hours per week helping with activities of daily living (ADLs), and whether the caregiver is paid. Conclusions: The use of the Caregiver module on the BRFSS can provide rich information on informal caregiving at the state level.

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