Survey and Research Instruments that Address the Health Effects of Caregiving
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This report describes the inventory and how it was created, and details the results of our assessment of caregiver-related government and non-government survey and research
instruments. As a context for available research, Chapter II provides a more theoretical discussion of a caregiver surveillance system and its components: population, time period of data
collection, types and sources of data, and methods of data collection. Chapter III describes the electronic database inventory of caregiver survey and research instruments and questions; this chapter includes methods by which instruments were identified and a list of instruments included, as well as explanations of key components within the instruments. Chapter IV
highlights important areas that have been covered in existing surveys, describes limitations of existing surveillance instruments that would need to be addressed in developing a national
surveillance system, and points to specific areas for potential future scientific activity that could help to improve caregiver surveillance and promote the state of the science on the public health effects of providing unpaid care to individuals with disabilities and chronic diseases. Chapter V summarizes our findings and describes the next steps in the project.
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