Development of a web-based survey on the financial risks of unpaid caregiving: approach and lessons learned from a Canadian perspective.

Abstract

Little is known about the financial risks of unpaid caregiving. This is, in part, due to challenges in identifying people who are caregivers and limitations in capturing all aspects of spending related to caregiving in existing approaches to public data collection. To fill these gaps, we developed a composite survey informed by validated instruments that assesses the types and magnitude of out-of-pocket expenditures caregivers incur in the provision of homebased care for someone living with a long-term health condition, and their impact across various domains of financial risk. This paper discusses the development of this survey currently in circulation in a Canadian province, and reflects on considerations in the engagement of unpaid caregivers in participatory research. Given its replicability and adaptability, this survey may inform future research in other developed or high-income settings and guide policy attention toward understanding how to protect unpaid caregivers from the financial risks of caring.