Unraveling the Burden Faced and Analyzing Coping Strategies Used by Caregivers in Pediatric Palliative Cancer Care: A Tertiary Cancer Center-Based Study in Uttar Pradesh, India: A Cross-Sectional Study

Abstract Caregivers of children receiving palliative care frequently experience substantial physical, psychological, social, and financial stress. In low- and middle-income countries such as India, limited access to structured psychosocial and palliative support services often increases the caregiving burden borne by family members. Understanding caregiver burden and coping strategies is essential for developing targeted interventions that support caregiver well-being and improve the quality of pediatric palliative care. To assess caregiver burden and coping strategies among primary informal caregivers of pediatric patients receiving palliative cancer care and to identify factors associated with caregiver burden. An observational cross-sectional study was conducted at two tertiary cancer centers in Varanasi, India. Seventy-three primary informal caregivers of pediatric cancer patients receiving palliative care were enrolled. Caregiver burden was assessed using the Caregiver Burden Scale–Indian Population (CBS-IP), and coping strategies were evaluated using the Brief Coping Orientation to Problems Experienced inventory. Descriptive statistics, Spearman's correlation, Mann–Whitney's U test, and Kruskal–Wallis' test were used for data analysis. The median age of pediatric patients was 10 years, and the median age of caregivers was 38 years. The mean total CBS-IP score was 260.7 ± 60.5, indicating moderate-to-high caregiver burden. Psychological burden (55.6 ± 13.7), time-dependent burden (54.7 ± 18.7), and social burden (53.8 ± 16.8) were the most affected domains. Emotion-focused coping demonstrated the highest mean domain score (19.52 ± 4.17), followed by problem-focused coping (16.33 ± 4.67). Active coping, planning, acceptance, religion, and instrumental support were the most frequently utilized coping strategies. Female caregivers experienced significantly higher burden than male caregivers (p < 0.001), and caregiver relationship with the patient was significantly associated with caregiver burden (p = 0.001). No significant correlations were observed among caregiver burden, coping strategies, patient age, caregiver age, and duration of caregiving. Primary caregivers of children receiving palliative care are vulnerable to significant and persistent multidimensional burden that may evolve throughout the caregiving trajectory. Early identification of high-burden caregivers and maladaptive coping patterns is essential for implementing timely psychosocial, emotional, and practical support interventions. Strengthening caregiver-centered support systems may improve caregiver resilience, reduce psychological distress, and enhance the overall quality of care delivered to children with cancer.