Feasibility of a multidisciplinary pilot intervention for parent/caregiver diabetes distress

Caregiver diabetes distress (DD) consists of negative emotions about a child's T1D diagnosis and has been associated with increased child haemoglobin A1c and family conflict. The primary aim was to identify the feasibility and acceptability of a multidisciplinary pilot intervention for caregiver DD in a diverse academic pediatric diabetes centre. Another primary aim was to determine the percentage of local caregivers with DD. A secondary aim was to determine if the intervention affected caregiver DD. We also explored potential associations between caregiver DD and demographic and diabetes-related characteristics.

Individual interviews with five caregivers with DD (who did not participate in the intervention) were held pre-intervention, in order to gather qualitative, open-ended feedback on prepared educational materials. As a pilot feasibility study, we held 3 monthly, one-hour educational and support group virtual sessions per cohort (6-8 caregivers) on Nutrition, Fear of Hypoglycemia and Parent/Child Collaboration. Sessions were attended by an endocrinologist with leaders from other disciplines including dietician, diabetes educator and/or social worker. Target enrollment was 30 caregivers with DD (PAID-PR/Problem Areas in Diabetes-Parent Revised score of ≥56/100) of children 5-17 years old with T1D for ≥6 months. Data include demographic information, pre-/post- PAID-PR scores, caregivers' session satisfaction ratings and open-ended written feedback. We also examined data from 26 parents of children who did not have elevated scores on DD (the comparison group) and were not invited to attend the intervention sessions.

Caregiver participants were 85% women, ages 42.5 ± 11.3 years; children's characteristics: 38% girls, ages 11.1 ± 2.1 years, 47.6% Black, 33.3% Caucasian, 9.5% Hispanic, 9.6% other, 43% public insurance, mean diabetes duration 4.3 ± 0.18 years and A1c 8.5 ± 0.7% (69.4 mmol/mol). Pre- and post-intervention PAID-PR scores improved from 68 to 51 (p < 0.05). This was sustained 3 months post-intervention with a mean PAID-PR of 42 (p < 0.05).

The pilot intervention was feasible, with two-thirds of caregivers attending ≥2 sessions. Reported DD improved over time. Limitations include a small initial sample. Future directions include expanding this study to a larger population and ultimately incorporating a similar support program into the clinical setting as part of routine outpatient diabetes care.