Development Of A Surveillance Module On Caregiving

DeFries EL, Andresen EM. Development Of A Surveillance Module On Caregiving. Paper presented at: Festival of International Caregiving, Disability, Aging and Technology Annual Conference; 2007 Jun 16; Toronto, Canada.

National caregiving surveys have advanced our understanding of the health effects of providing informal care to someone with a disability or chronic condition. They also 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. The CDC funded the University of Florida to create a ten-item Caregiver Module to be added to the state-based Behavioral Risk Factor Surveillance System (BRFSS), the world's largest telephone survey. This process involved reviewing relevant literature and measures, and a national stakeholders meeting. The resulting module was pilot-tested during the 2005 North Carolina BRFSS. In addition, some caregivers completed a 20-minute in-depth follow-back interview. 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. On average, caregivers provided 20.1 (SE 1.4) hours of care per week, and had been providing care for 42.5 months (SE 2.4). Caregivers reported significantly more poor mental health days than non-caregivers, but had slightly fewer days of poor physical health. The average age of care recipients was 65.6 (SE 1.2), and 40.9% (95% CI: 35.7, 46.4) had a problem with memory or confusion. 374 caregivers also participated in the follow-back interview. A brief burden measure from the module correlated well with the detailed scale from the follow-back interview (r = 0.56). The Caregiver Module can provide state-level data on the prevalence and health impacts of caregiving, and characterize dimensions of caregiver experience.