Psychological distress and caregiver burden among caregivers of children with chronic liver disease: A cross-sectional study.

INTRODUCTION

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.

METHODS

A 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.

RESULTS

Mean 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.

CONCLUSIONS

Half 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.