Supplementary Material for: Objective burden and emotional distress in parents of children with type 1 diabetes

Introduction: The management of childhood type 1 diabetes requires the active participation of parents. The aim of the present study was to describe the main characteristics of parents of children with type 1 diabetes, including objective burden regarding time spent on diabetes care, emotional distress (exhaustion, need for respite, quality of life), and symptoms of depression as well as anxiety. Methods: In this observational study, parents of children with type 1 diabetes completed a questionnaire, anonymously. Different questions were asked to the parent about the objective burden of diabetes and its repercussion, their exhaustion and need for respite. Two validated instruments (HADS, WHOQOL-BREF) have been integrated into the questionnaire. Results: Eighty eight parents were included in the study. Among them, 76 (86%) were mothers. All the parents with a child aged 6 years or younger (10/10) reported having to take care of their child’s diabetes twice or more a day, this was the case for 37/39 (94.9%) parents of children aged 7 to 13, and for 16/36 (44.4%) of parents of children aged 14 years or above. In the total population, 33/86 (38.4%) parents declared getting up every night because of their child’s diabetes. The median daily time spent on diabetes management was 40 minutes. There were 54 parents (62.8%) who reported moderate-strong exhaustion, and 27 (30.7%) who expressed a moderate-strong need for respite. Regarding the result of the HADS, 46 parents (55.4%) reported symptoms of anxiety and/or depression. Discussion/Conclusion: Parents of children with type 1 diabetes must carry out multiple daily care, at all times of day and night. Their emotional state can be impacted with, in particular, a risk of exhaustion. Screening for these difficulties should be a part of the overall management of a child with type 1 diabetes and his family to limit various complications.