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.