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Research

Evaluating home-based palliative care through caregiver-reported outcomes in children with advanced cancer: a cross-sectional study from South India

27 Aug 2026
T K Jithin, M S Biji, K G Gopakumar, K N Rizwana, T Nimitha

Background: Paediatric palliative care (PPC) services in low- and middle-income countries remain underdeveloped, with limited data on caregiver-reported outcomes. Families of children with advanced cancer often transition from hospital-based oncology services to home-based care, but little is known about their satisfaction with the care received.

Objective: To evaluate caregiver satisfaction with home-based PPC after hospital discharge and identify gaps in symptom management, psychosocial and financial support, home care access and morphine availability.

Methods: A cross-sectional survey was conducted among caregivers of children with advanced cancer who were discharged for home-based palliative care. A structured, expert-validated questionnaire assessed satisfaction across domains including counselling, symptom relief, psychological and financial support, home care and pain management. Composite scores were calculated using domain medians. Descriptive, bivariate and multivariable analyses were performed.

Results: Thirty-six caregivers participated (response rate 60%). Pain was reported in 91.7% of children; although 72.7% received morphine, only 42.4% of caregivers were satisfied with pain control. Rural families reported significantly better symptom relief than urban families (p = 0.034). Home care services reached 55.6% of families and were associated with higher satisfaction and fewer admissions. Financial and psychological support satisfaction were moderate. Male children were less likely to receive home care (adjusted odds ratios 0.18, p = 0.045). Bereavement support was provided to 72.2% of families.

Conclusion: Substantial gaps in symptom relief, opioid access, financial support and home care availability limit caregiver satisfaction with PPC. Strengthening paediatric-focused home care, improving pain management and addressing urban–rural disparities are essential to enhance PPC quality in India.

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