Parent Distress in Life with a Child with Type 1 Diabetes

Objective: The purpose of this study was to highlight parent distress in diabetes, identify factors associated with distress and to show how public health and clinical professionals can assist parents in coping with their child\u27s diabetes and living positively as a family unit. Methods: Parents of youth with diabetes (N = 41 qualitative, N = 332 quantitative) were engaged in focus groups, interviews, and survey research to understand their needs and stressors in life with a child with diabetes. Themes were examined in the qualitative data, and correlations and a regression model were run and analyzed from the quantitative data set, made available by the Behavioral Diabetes Institute. Results: The results of the study suggested that parents who were more isolated, have tense relationships with youth, and have greater family conflict are most likely to report high levels of distress. Parents shared that they experience great fear related to life with diabetes and describe the fear as constant and unrelenting. Most parents experienced frustration related to life with diabetes, yet the frustration changes with time and disease experience. Distress was more common in mothers, as well as in younger parents. Distress was also shown to correlate with duration of disease and younger parent age. Discussion: Distress is a part of life with diabetes, both for the person with diabetes and their caregivers. Parent distress is particularly challenging as it includes the delicate balance between the parent being the life support for the child with diabetes and the parent learning to let go of the same child in the maturation process. Parents face difficulties knowing how to assist their child proactively without creating a negative family dynamic. There is opportunity for health professionals to intervene in the family experience in life with diabetes. Health professionals should be aware of the kind of distress families are experiencing, the environment in which the family lives and functions, and the coping mechanisms used by each person in the family with diabetes. Understanding parenting style would be useful in identifying parents that may need extra support and education about living with and helping their child with diabetes. Shifts in the diabetes education practices around diabetes would also benefit families. More emphasis on family dynamics in clinical environments would provide greater understanding for health professionals about family functioning and diabetes distress