Table 2 Summary of outcomes from included studies reporting the burden of pediatric T1D on informal caregivers
Tool | Measure | Main Findings |
|---|---|---|
Fear of hypoglycemia in parents of children with T1D | • Mothers showed higher HFS-P total scores and higher Worry subscale scores than fathers. • Parents of children younger than 12 years showed higher levels of fear of hypoglycemia when compared to parents of children 12 years or older. • Parents who reviewed their child’s blood glucose regularly had higher levels of fear of hypoglycemia. • Parents of children receiving CSII reported significantly reduced fear of hypoglycemia at 6 months follow-up when compared to the MDI group. Recently diagnosed children [82] • At diagnosis, caregivers of children aged 11 or younger had elevated levels of fear, and it decreased over time. • Parents using Parent Education Through Simulation–Diabetes had higher levels of fear. | |
Center for Epidemiological Studies– Depression Scale (CES-D) [55, 83,84,85,86] | Depression | • Parents did not experience clinical depression. • Parents, family members, or other informal caregivers of patients attending team clinical visits and those attending regular face-to-face visits did not show any significant changes in the CES-D scores over time and they all did not experience clinical depressive disorder. |
Problem Areas in Diabetes Survey– Parents (PAID) [83, 87,88,89,90,91] | Diabetes-specific emotional distress in parents of youth with T1D | • Parents who use CGM showed lower emotional distress than parents who do not use technology. |
Family conflict around diabetes management | • Parents of patients with elevated risk of future complications showed the highest level of family conflict. • Family conflict is representative of the quality of parent-child relations, which is also predictive of glycemic control. • There was a decrease in family conflict in families using the Diabetes Learning Family Intervention (DEFLIN). | |
State-Trait Anxiety Inventory (STAI) [80, 83, 85, 86, 95, 96] | State anxiety (at the moment) and trait anxiety (in general) | • Mothers showed higher levels of state and trait anxiety, as well as overall anxiety. • Parents experienced more anxiety than their children. |
Parenting Stress Index (PSI) [97] | Distress associated with the parental role | • Parents of adolescents (13–18 years) had higher levels of distress when compared with parents of younger children (8–12 years). |
The subjective psychological burden associated with providing care to a child with T1D | • Most parents reported experiencing moderate subjective burden. | |
Depression, anxiety, and stress | • Parents receiving stress management education experienced a decrease in the levels of stress, anxiety, and depression over time. • There was a decrease in stress, anxiety, and depression in parents using the Diabetes Learning Family Intervention (DEFLIN). |