Caregiver burden profiles and associated factors among informal caregivers of children and adolescents with type 1 diabetes: a cross-sectional study

Objectives To identify caregiver burden profiles among informal caregivers of children and adolescents with type 1 diabetes and explore associated factors. Design A multicentre cross-sectional survey was conducted. Setting and participants The study was conducted in three tertiary hospitals in Xinjiang, China, from January 2023 to February 2024. A total of 259 informal caregivers participated in the study, comprising 207 females (79.9%). Primary outcome measures The primary outcome was caregiver burden profiles derived from a latent profile analysis of the Caregiver Burden Inventory domain scores. The factors associated with different burden profiles were also examined, including caregiver competence. Results Informal caregivers have a mean age of 41.7±7.1 years. Three distinct caregiver burden profiles were identified: mild burden (29.7%), moderate burden (55.6%) and severe burden (14.7%). Caregivers of children and adolescents diagnosed within 1–5 years had significantly higher odds of experiencing severe burden compared with those with a disease duration of ≤1 year (OR 7.27, 95% CI 1.81 to 29.08). Higher caregiver competence in managing family and social resources (OR 0.67, 95% CI 0.49 to 0.91) and in self-emotion management (OR 0.55, 95% CI 0.38 to 0.79) were associated with lower odds of severe burden. Conclusions Targeted interventions are needed to support informal caregivers during the 1–5 years following their child’s diagnosis. Enhancing caregiver competence in managing family and social resources, as well as self-emotion management, can help alleviate caregiver burden.