This study examined parental and caregiver distress among families caring for children with type 1 diabetes as the child transitions into Emerging Adulthood. More than 96 hours of semistructured interviews were conducted with 19 adult caregivers including parents, grandparents, and other adult family members of 10 children. Each research partner participated in multiple face-to-face, 1- to 1.5-hour long-evolving interviews over the course of 4.5 years. Paradoxically, caregivers were found to experience significant increase in distress as their child with diabetes entered the developmental stage of Emerging Adulthood, 18 to 25 years old, by which time they should be masters of self-care, and parental distress should begin to decline. This increase in familial distress was associated with the emerging adults leaving the home, being unable to maintain an acceptable level of self-care, and experiencing declining health, frequent visits to the emergency department, and repeated hospitalizations. These findings suggest that parental distress from caring for a child with diabetes continues as the child ages, matures, and transitions into adulthood and may be exacerbated when the emerging adult with type 1 diabetes leaves the home and the direct observation and care of the parent.

Diabetes among American Indian (AI) people is a health disparities condition that creates excessive morbidity and mortality. This research delineated culturally constructed models of type 2 diabetes among 97 pregnant women in two large AI nations in Oklahoma. The data analysis of explanatory models of type 2 diabetes revealed the participants’ intense anxiety, fear, and dread related to the condition. The sample was further stratified by combinations of diabetes status: 1) absence of type 2 diabetes (n = 66), 2) type 2 diabetes prior to pregnancy (n = 4), and 3) gestational diabetes (n = 27). Patients were interviewed regarding perceptions of the etiology, course, and treatment of diabetes. The research incorporated an integrated phenomenologic and ethnographic approach using structured and semi-structured interviews to yield both quantitative and qualitative data.General findings comprised three main categories of patients’ concerns regarding type 2 diabetes as an illness: 1) mechanical acts (i.e., injections), 2) medical complications, and 3) the conceptual sense of diabetes as a “severe” condition. Specific findings included significant fear and anxiety surrounding 1) the health and well-being of the unborn child, 2) the use of insulin injections, 3) blindness, 4) amputation, and 5) death. Paradoxically, although there was only a slight sense of disease severity overall, responses were punctuated with dread of specific outcomes. The latter finding is considered consistent with the presence of chronic diseases that can usually be managed but present risk of severe complications if not well controlled.

Diabetes among American Indian (AI) people is a. condition that creates excessive morbidity and mortality and is a significant health disparity. This research delineated culturally constructed models of diabetes mellitus (DM) among 97 pregnant women in 2 large AI Nations to Oklahoma. Analysis of data revealed intense anxiety, fear, and dread related to DM during pregnancy. The sample was stratified by DM status: (a) absence of DM (n = 66), (b) DM prior to pregnancy (n = 4), and (c) gestational (n = 27). Structured and semistructured interviews elicited patient culturally based explanatory models (EMs) of etiology, course, and treatment. The research incorporated an integrated phenomenologic and ethnographic approach and yielded both quantitative and qualitative data. General findings comprised the following main categories of patients’ concerns regarding DM as an illness: (a) care-seeking behaviors, (b) medical management, (c) adherence and self-management, (d) complications, and (e) the conceptual sense of DM as a “severe” and feared condition. Many findings varied according to acculturation status, but all included significant fear and anxiety surrounding (a) the health and well-being of the unborn child, (b) the use of insulin injections, (c) blindness, (d) amputation, and (e) death, but with (f) a paradoxically lowered anxiety level about diabetes severity overall, while at the same time expressing extreme dread of specific outcomes. The latter finding is considered consistent with the presence of chronic conditions that can usually be managed, yet still having risk if severe.

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, allencompassing work to preempt a disastrous drop in their child's glucose as a stresspath 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