“I’m essentially his pancreas”: Parent perceptions of diabetes burden and opportunities to reduce burden in the care of children <8 years old with type 1 diabetes
- Commissariat, Persis V.
- Harrington, Kara R.
- Whitehouse, Amanda L.
- Miller, Kellee M.
- Hilliard, Marisa E.
- Van Name, Michelle
- DeSalvo, Daniel J.
- Tamborlane, William V.
- Anderson, Barbara J.
- DiMeglio, Linda A.
- Laffel, Lori M.
DOIAbstract
Background: Across all age groups, management of type 1 diabetes (T1D) places substantial responsibility and emotional burden upon families. This study explored parent perceptions of the burdens of caring for very young children with T1D. Methods: Semi-structured qualitative interviews were conducted with parents (85% mothers) of 79 children with T1D, aged 1 to <8 years old, from four diverse pediatric diabetes clinical centers. Interviews were transcribed, coded, and analyzed using hybrid thematic analysis to derive central themes. Results: Youth (77% White) had T1D for ≥6 months: age (M ± SD) 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, and A1c 63 ± 10 mmol/mol (7.9 ± 0.9%); 66% used an insulin pump and 61% used CGM. Three ma...
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