Uganda has one of the youngest populations in the world, with over 57% of its citizens under 14 years. Yet, children face daunting health challenges; infant mortality stands at 61 per 1,000 live births, malaria, respiratory infections, and diarrheal diseases remain leading causes of death, and malnutrition continues to weaken survival. HIV/AIDS has left 1.2 million orphans, while 150,000 children under 15 live with the virus. With over 41% of Ugandans living in poverty and many rural families struggling to access under-resourced health facilities, the need for support is urgent.

Childhood cancer adds to this burden. Each year, Uganda records an estimated 1,500 – 3,000 new childhood cancer cases, yet only 30% reach the Uganda Cancer Institute. Most cancers are treatable, but survival remains at just 20–30%, far below global averages. Financial constraints, transportation challenges, and stigma cause nearly one-third of families to abandon treatment.

The Palliative Care Association of Uganda (PCAU) launched the Special Hearts to Nurture Every Child (SHiNE Child) Program as a pioneering community navigation initiative to address the pressing challenges faced by families with seriously ill children. Implemented across five underserved districts in Southwestern Uganda, the program is anchored in strong partnerships with Mbarara Regional Referral Hospital, Kitagata General Hospital, Nsiika Health Centre IV, Mitooma Health Centre IV, Lugazi Health Centre IV, and more than ten additional lower-level health facilities. Its focus is to ensure equitable access to care for children suffering from cancer and other life-threatening conditions—including sickle cell disease, rheumatic heart disease, malnutrition, and neurological disorders—through the provision of essential support services.

Our Core Interventions

The SHiNE Child Program delivers holistic, family-centered support through:

• Transportation assistance for hospital visits and follow-ups.
• Capacity building for health workers to integrate palliative care.
• Nutrition and psychosocial support to ease caregiver burden.
• Cost assistance for diagnostics and treatment.
• Community awareness campaigns to reduce stigma and promote early diagnosis.
• Follow-up care through home visits and treatment adherence support.
• Healthcare system strengthening, including CPD training and supply of essential medicines.

Implementation: A Grassroots Approach

A dedicated team of nurses, volunteers, and Village Health Teams (VHTs) collaborate with health workers to identify, refer, and support children. They provide transport, home visits, and constant communication with families, ensuring continuity of care even in resource-limited settings.

Our Current Achievements (2020–2024)

• 61 children enrolled in the program.
• 22 children remain in treatment; 12 have achieved remission.
• 23 children received dignified end-of-life care with bereavement support for families.
• Only 2 cases lost to follow-up, showing strong navigation and support.
• Caregivers report reduced costs and improved treatment adherence.

Lessons Learned:

The program has shown that:

• Constant communication sustains trust and adherence.
• Modest supports like transport or reminders yield big impacts.
• Mothers play a central role in caregiving.
• VHTs are vital bridges between homes and health facilities.
• Data gaps and documentation challenges persist at lower-level facilities.
• Families often need holistic support beyond healthcare—nutrition, shelter, and education.

Planned Next Steps – Scaling Impact in a Resource – Limited Setting.

• Conduct research to formally evaluate and share program impact.
• Strengthen ICT-based data systems.
• Expand partnerships with NGOs, government, and international stakeholders.
• Provide holistic support addressing post-treatment nutrition, stigma, and education.
• Train more VHTs and expand to new districts.

The SHiNE Child Program demonstrates that community-based navigation transforms care for seriously sick children in Uganda. Yet, scaling impact requires funding and partnerships. With an annual budget shortfall of USD 15,000, PCAU is seeking partners to sustain and expand this lifeline for children and families.

For more information about the SHiNE Child Program and PCAU, please get in touch with Mark-Donald Mwesiga, the Executive Director at PCAU, by email  mark.mwesiga@pcau.org.ug or telephone +256 785884205