Diabetes-by-Proxy: Virtual Embodiment of Disease by Oklahoma Choctaw Parents of Children with Type 1 Diabetes
Corresponding Author
J. Neil Henderson
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Duluth campus Memory Keepers Medical Discover Team, University of Minnesota Medical School
Email: [email protected]
Search for more papers by this authorLinda D. Carson
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Search for more papers by this authorAlisa Tomette
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Duluth campus Memory Keepers Medical Discover Team, University of Minnesota Medical School
Search for more papers by this authorAmanda Hass
Duluth campus Memory Keepers Medical Discover Team, University of Minnesota Medical School
Search for more papers by this authorKama King
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Search for more papers by this authorCorresponding Author
J. Neil Henderson
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Duluth campus Memory Keepers Medical Discover Team, University of Minnesota Medical School
Email: [email protected]
Search for more papers by this authorLinda D. Carson
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Search for more papers by this authorAlisa Tomette
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Duluth campus Memory Keepers Medical Discover Team, University of Minnesota Medical School
Search for more papers by this authorAmanda Hass
Duluth campus Memory Keepers Medical Discover Team, University of Minnesota Medical School
Search for more papers by this authorKama King
American Indian Diabetes Prevention Center, University of Oklahoma Health Sciences Center
Search for more papers by this authorAbstract
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.
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