Illness uncertainty in caregivers of children with esophageal atresia: Determinants and item-level patterns in a...

Children with esophageal atresia (EA) require long-term follow-up for gastrointestinal and respiratory complications, placing sustained demands on caregivers. Caregiver illness uncertainty remains poorly characterized in this population.

We conducted a cross-sectional survey of 190 caregivers of children treated surgically for EA. Illness uncertainty was assessed using the Chinese version of the Mishel Uncertainty in Illness Scale-Family Member form (MUIS-FM). Univariate analyses, child- and caregiver-related multivariable linear regression models, and item-level descriptive analyses were performed.

The mean total illness uncertainty score was 77.63 ± 16.86. Lack of information had the highest mean item score (3.59 ± 0.50), followed by complexity (2.98 ± 0.71), ambiguity (2.52 ± 0.61), and unpredictability (1.82 ± 0.84). In the child-related model, preterm birth (B = 10.08), only-child status (B = 4.82), EA type A/B (B = 5.52), and feeding difficulties (B = 5.54) were independently associated with higher uncertainty, whereas having one or more tubes was associated with lower uncertainty scores (B = -5.66). In the caregiver-related model, monthly household income ≤5000 RMB was associated with higher uncertainty (B = 14.73), while education below bachelor's degree was associated with lower scores. Item-level analyses localized subgroup differences to post-discharge care, treatment complexity, caregiving preparedness, disease instability, and future uncertainty.

Caregiver illness uncertainty after EA repair was characterized mainly by information gaps and care-related complexity. Structured, family-centered follow-up should provide actionable caregiving information, anticipatory guidance, and targeted support for higher-risk families.