Diabetes‐by‐Proxy: Virtual Embodiment of Disease by Oklahoma Choctaw Parents of Children with Type 1 Diabetes


Childhood type 1 diabetes is increasing globally and requires meticulous at‐home care due to risks for fatal outcomes if glucose levels are not continuously and correctly monitored. Type 1 diabetes research has focused on metabolism and stress measurements confirming high parental worry levels. However, research on caregivers’ management strategies has lagged. We show parents’ intense, all‐encompassing work to preempt a disastrous drop in their child’s glucose as a stress‐path to the virtual embodiment of their child’s condition. That is, parents acquire diabetes‐by‐proxy. Our findings derive from four and half years of ethnographic research with the same 19 families in the Choctaw Nation of Oklahoma. These parents were exceptionally engaged as caregivers and distressed by the potentially fatal outcome of type 1 diabetes mismanagement. Diabetes‐by‐proxy names the parents’ experience and validates clinical attention to them as they cope with their crucial caregiving commitment.