# Paediatric palliative care following hospital discharge: Prevalence and factors associated with non-continuity of palliative care for children with cancer in Busoga sub-region-eastern Uganda; A mixed methods study

## TL;DR

This study finds that most children with cancer in Uganda's Busoga region lose access to palliative care after hospital discharge due to multiple barriers like poor referrals and lack of resources.

## Contribution

The study provides the first data on palliative care continuity for children with cancer in Uganda, identifying systemic and cultural barriers in the Busoga sub-region.

## Key findings

- 96.1% of children with cancer in Busoga did not continue palliative care after hospital discharge.
- Lack of referrals and systemic issues like poor funding and training were major barriers to continuity.
- Cultural beliefs and caregiver knowledge gaps also contributed to discontinuity in palliative care.

## Abstract

Palliative care (PC) is crucial for children with cancer to alleviate suffering and enhance quality of life. However, continuity of pediatric palliative care (PPC) can be disrupted by factors such as lack of knowledge, stigma, bureaucratic hurdles, inadequate referral systems, and staffing shortages. There is limited data on the prevalence and factors associated with non-continuity of PPC in Uganda. This study explores the prevalence and factors contributing to non-continuity of PC among children with cancer in Uganda with Busoga Region in Eastern Uganda as a case study.This cross-sectional mixed-methods study was conducted at three facilities; two specialized tertiary facilities managing pediatric cancer and one Hospice Centre. Data were extracted from online databases for 307 children treated from 2019 to 2023, of whom 80 were alive during the study. A semi structured questionnaire was administered to caregivers of 77 children while nine key informant interviews were done with health workers from the three study sites. Descriptive statistics summarized data as proportions or percentages, and bivariate analysis used crude odds ratios to identify significant associations. Key informant interviews were transcribed and analysed thematically using the socio-ecological model. The prevalence of non-continuity of PC was 96.1% (95% CI: 88.4-98.0). All children who did not continue with PPC had received no referral to their nearest PPC provider. Barriers identified included: individual-level gaps in caregiver knowledge; relationship-level issues such as inappropriate cultural beliefs; health system-level challenges like limited human resources, inadequate training and funding, poor coordination and referral pathways, and service access issues; and policy-level concerns, including the lack of a national palliative care policy. The high prevalence of non-continuity of PC for children with cancer in Busoga highlights significant deficiencies in integrating palliative care into pediatric oncology services in Uganda. Addressing these challenges requires urgent government action to enhance palliative care funding and resources.