Management and Family Burdens Endorsed by Parents of Youth <7 Years Old With Type 1 Diabetes

Abstract

BACKGROUND: This study investigated unique burdens experienced by parents of young children with type 1 diabetes in the context of contemporary diabetes management. METHODS: Self-report surveys and medical record information from the T1D Exchange clinic registry were used. Parental burden and family impact scores were tabulated across demographic and clinical characteristics, overall and according to age group (<4, 4-<6, and 6-<7 years). RESULTS: The mean age of the 597 children was 5.2 ± 1.2 years (n = 111 <4 years, n = 291 4-<6 years, and n = 195 6-<7 years) and mean duration of diabetes was 2.4 ± 1.1 years. Mean hemoglobin A1c was 8.2% ± 1.1%. Approximately one-third (31%) reported their child was currently using CGM and over half (58%) reported using insulin pumps. The most frequently endorsed parent-reported burdens of diabetes were worrying about child having a low blood sugar (74%), about the future and possibility of serious complications (70%), and feeling upset when their child's diabetes management is "off track" (61%). Areas endorsed for negative family impact were diminished amount or quality of sleep for family members (59%) and need for flexible working arrangements to help care for their child (55%). CONCLUSIONS: Substantial burdens remain for parents of young children with type 1 diabetes, despite the availability of advanced technologies for diabetes management.