ESPE Yearbook of Paediatric Endocrinology

To read the full abstract: Pediatr Diabetes. 2020 Mar;21(2):377–383. doi: 10.1111/pedi.12956. PMID: 31808586

Across all age groups, management of type 1 diabetes (T1DM) places substantial workload, responsibility and emotional burden, such as worries and stress, on families. This study explored parent perceptions of the burdens of caring for very young children with T1DM. Semi-structured qualitative interviews were conducted with parents (85% mothers) of 79 children with T1DM, aged 1 to <8 years old, in 4 pediatric diabetes clinical centers. Interviews were transcribed, coded, and analyzed using hybrid thematic analysis to derive central themes.

Children (77% white) had diabetes for ≥6 months: mean ± S.D. age was 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, HbA1c 63 ± 10 mmol/mol (7.9 ± 0.9%); 66% using insulin pump, and 61% using CGM. Three major themes emerged related to diabetes burden: (a) the emotional burden on the parents and their children, (b) the burden of finding, training, and trusting effective secondary caregivers to help manage the child’s diabetes, and (c) suggestions for more comprehensive, personalized diabetes education from healthcare providers for parents and secondary caregivers to reduce parental burden and worry.

In families with very young children with T1DM, parental perceptions of the burden of managing diabetes are common and could be mitigated by tailored and structured education programs that increase parent knowledge, bolster parents’ self-confidence, and increase trust in their secondary caregivers to manage diabetes. Reduced parental burden and increased caregiver knowledge may positively impact child’s glycemic control, as well as improve parent and child quality of life.

This study addresses very well one of the major burdens of parental care for young children with diabetes. Parents have to explain repeatedly basic knowledge about diabetes management to their children and, even more problematic, to those persons providing secondary care for their child. The education of these secondary caregivers, e.g. in kindergarten or primary school, has to be done in a personised manner. Therefore, parents need the help of diabetes educators and the willingness of those persons who are responsible for children outside the home. Both are time consuming and have to be delivered with care. Even in the US setting described here, a lack of personnel with medical background in kindergartens is described. A recent American Diabetes Association statement demands that all childcare staff responsible for young children should have a basic knowledge of diabetes and its management and know how to get medical help if needed. Staff who are more directly and more often involved in the child’s care may even require advanced education, such as regarding insulin administration, carbohydrate counting, and more.