Aim: Emotional responses, such as feeling overwhelmed with diabetes-related treatment, burnt-out and anxiety, are known as ‘diabetes distress’. This study aimed to determine diabetes distress among children, adolescents and parents/carers managing insulin-requiring diabetes in a regional Australian setting, and to assess association with glycaemia.
Methods: All children, adolescents and their parents/carers attending a regional hospital outpatient diabetes clinic between March 2018 and June 2019 were invited to complete a validated child, adolescent or parent/carer diabetes distress questionnaire. Demographics and time-matched clinical data were obtained from hospital records. A cross-sectional analysis was performed.
Results: A total of 43 young people and 30 parents/carers completed a diabetes distress questionnaire during the study period. Diabetes distress was common, with 63% of young people and 67% of parents/carers nominating at least one serious concern. After adjustment for potential confounding factors, higher glycaemia (HbA1c%) was associated with higher distress scores among both young people (ß 6.2, 95% confidence interval (CI): 3.2–9.2, P < 0.001) and carers/parents (ß 5.6, 95% CI:1.5–9.8, P < 0.001). Diabetes distress did not differ by child age, duration of diagnosis or mode of insulin administration. For children, adolescents and carers, ‘serious concerns’ most commonly related to the impact of diabetes upon family and peer relationships.
Conclusions: Diabetes distress was common and associated with sub-optimal glycaemia. Routine screening for diabetes distress should be considered in paediatric services. Development of strategies to minimise diabetes distress for youth and families is required.