Objective Burden and Emotional Distress of Parents of Children with Type 1 Diabetes

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.

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 their need for respite. Two validated instruments (HADS, WHOQOL-BREF) have been integrated into the questionnaire.

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 7-13 and for 16/36 (44.4%) 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 min. 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.

Parents of children with type 1 diabetes must carry out multiple daily care tasks, 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.