“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

Abstract

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 major themes emerged related to diabetes burdens: (a) the emotional burden of diabetes on themselves and their children, (b) the burden of finding, training, and trusting effective secondary caregivers to manage the child's diabetes, and (c) suggestions for how more comprehensive, personalized diabetes education from healthcare providers for parents and secondary caregivers could help reduce parent burden and worry.Conclusions: In families with very young children with T1D, parental perceptions of the burden of managing diabetes are common and could be mitigated by tailored education programs that increase parent knowledge, bolster parents' confidence in themselves, 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. K E Y W O R D Sadolescent, blood glucose, caregivers, child, glycated hemoglobin A, parents, quality of life, type 1 diabetes mellitus

Caring for caregivers: the impact of the COVID-19 pandemic on those responsible for children and adolescents with type 1 diabetes

“…The difficulty in finding someone reliable and used to the demands of diabetes is also challenging. This makes the role of caregiver a full-time job 2 . Despite these issues, concerns tend to be child-centered and the psychological demands of family members involved in childcare are often neglected.…”

“…Despite everything mentioned above, the psychological repercussion of the current scenario in guardians of children and adolescents with diabetes remains hypothetical. Several studies have shown that the deleterious effects of the caregiver's psychological distress apply to both caregivers and children, resulting in worse glycemic control and increasing the incidence of depression during adolescence 2,[5][6][7][8][9][10] . The care for caregivers' mental wellbeing, however, has received little priority when assessing the impact of stressful situations, such as the current pandemic of COVID-19 and the social distancing it requires 11 .…”

A systematic review of parents’ experiences of raising a child with type 1 diabetes

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Monitoring of Pediatric Type 1 Diabetes

“…Physical discomfort, body image concerns, the need to be connected to the device at all times, frequent alarms that disrupt daily life, and the expense of the technology are all frequently cited patient concerns regarding CGM use (44,(104)(105)(106)(107). Parents of young children with T1D indicate that they would like to receive targeted formal education to improve their knowledge of these technologies, thereby reducing the burden of diabetes management (108). Adolescents with more depressive symptoms and lower overall and diabetes-specific quality of life are less likely to use CGMs suggesting that recognition of these factors and appropriate intervention may improve device uptake in this population (109).…”