The Structural Burden of Caregiving: Shared Challenges in the United States and Canada

Abstract

In contrasting health care structures, we each served as caregivers to elderly parents where a shared and unexpected theme in our experiences was the substantial burden of negotiating and managing long-term care (LTC) services within our respective health and social care systems. In this article, we introduce and elucidate an under recognized source of caregiver burden in the United States and Canada: the structural burden of caregiving. We draw on shared and unique experiences cross-nationally, along with the literature, to illustrate that (a) today's caregiving is increasingly characterized by interactions with formal health and social systems in negotiating and managing services, (b) these systems are hampered by discontinuous and fragmented care which increase caregiver stress, and (c) this structural burden likely exacerbates inequity for both care recipients and caregivers. In conclusion, we call for theoretical models of caregiving to highlight health and social systems as creating burden and for measurement of caregiver burden to explicitly consider the time and stress stemming from interactions with formal health and social systems. Finally, we call for future policy evaluation to incorporate structural burden as an additional outcome in considering changes to LTC provisions and funding.

Keywords: Care coordination; Caregiver stress; Healthcare policy; Long-term care.