Psychological distress and caregiver burden among caregivers of children with chronic liver disease: A cross-sectional study
摘要
Caregivers of children with chronic liver disease (CLD) face substantial psychosocial demands, yet evidence outside transplant settings, especially in low- and middle-income contexts, remains limited. This study assessed caregiver burden, stress, and caregiving attitudes, and explored caregiver- and patient-related predictors of high burden.
MethodsA cross-sectional study was conducted at a tertiary hepatology/transplant center between January and April 2025. Thirty-six family caregivers completed interviewer-administered questionnaires, including the Caregiver Strain Index (CSI), the Zarit Burden Interview–Short Form (ZBI-12), and a 5-item Attitudes Toward the Caregiving Role scale. High burden was defined as ZBI > 19.
ResultsMean caregiver age was 45.7 ± 9.0 years; 63.9% were male. Mean ZBI was 19.33 ± 7.26, and 50.0% reported high burden. Mean CSI was 6.51 ± 3.03; 50.0% had high stress (CSI ≥ 7). Caregiving attitudes were generally positive (mean 21.92 ± 4.72; α = 0.908). ZBI scores correlated positively with CSI (r = 0.671, p < 0.001) and negatively with attitudes (r = − 0.335, p = 0.046). In adjusted models, high stress independently predicted high burden (OR 24.18, 95%CI 2.45–238.85; p = 0.006), whereas positive attitudes were protective (OR 0.04, 95%CI 0.002–0.63; p = 0.023; model R²=0.635). Female gender, homemaker status, greater disease severity, and complications were linked to higher burden in bivariate analyses, while shared caregiving and larger families appeared protective; however, none remained significant after adjustment.
ConclusionsHalf of the caregivers experienced high stress and burden. Psychosocial factors, particularly stress and caregiving attitudes, were stronger predictors of burden than demographic or illness-related variables. Findings support the integration of family-centered care, which incorporates stress reduction, resilience-building, adaptive meaning-making, and structural supports.