Challenges of Using Secondary Data to Study Rural Caregiving within the United States

When health fails, rural residents often turn to informal caregivers for assistance and are more likely to do so than those living in urban areas. Scholarship is clear in demonstrating the many burdens that accrue to those providing informal care. Furthermore, caregivers in rural areas face amplified health disparities and stressors, and limited access to resources and formalized supports. Yet, the study of informal caregiving within geographic context is made difficult by the limitations inherent in existing secondary data sources. In this report, we discuss three available data sources that provide information about US caregivers: the National Family Alliance Caregiving in the US Survey; Health and Retirement Survey; and National Survey of Midlife Development in the United States. These datasets illustrate common challenges of studying rural caregiving, including how to define rural residence, issues with data access, and difficulties attaining an adequate sample size. After reviewing these methodological issues, we identify two additional data sources that while promising, suffer from challenges of their own. We conclude by offering suggestions about how to capture the unique experiences of rural caregivers beyond the use of secondary data.