SHiNE Child Program

A community-based cancer navigation program is an excellent answer to childhood cancer challenges: Lessons from the SHiNE Child Program in Uganda.

By

Mark-Donald Mwesiga, mark.mwesiga@pcau.org.ug

Brief background to the challenge of cancer in children.

Globally, it is estimated that 429,000 children and adolescents develop cancer annually, with almost 40% being from Africa. Uganda registers 1,500- 3,000 new child and adolescent cancers annually, with only about 30% presenting to the Uganda Cancer Institute (UCI). The most prevalent childhood cancers in Uganda include: Burkitt lymphoma, acute leukemia, Wilms tumor, and rhabdomyosarcoma.

Although most childhood cancers can be cured with appropriate treatment, the survival rate for childhood cancer in Uganda is around 20%-30%. Several challenges, including about 30% treatment abandonment, explain this state. Many families lack the transport and money to cover the related costs of treatment. Over 41 percent of Uganda's population lives below the international poverty line.

The intervention of community cancer navigation

The Palliative Care Association of Uganda (PCAU) initiated the Special Hearts to Nurture Every Child (SHiNE Child) Program as a pioneering effort in community cancer navigation, aimed at addressing childhood cancer challenges with community support. The program thrives on a strong grassroots partnership among PCAU, Mbarara Regional Referral Hospital, Kitagata Hospital, and over 10 lower health facilities.

The program seeks to develop a community-based cancer navigation platform for children, tackling gaps in access, diagnosis, and follow-up care for those living in five underserved districts. Its most significant intervention is providing transportation for children and their caregivers from their homes to the hospital and back during treatment cycles. Additionally, the program focuses on capacity building for health workers, strengthening the integration of palliative care, and enhancing awareness, food and nutrition support, psychosocial support, cost of diagnosis and treatment support, capacity building for health workers at lower health facilities, and cancer prevention efforts.

How is the program implemented?

The program is implemented by a team of dedicated palliative care nurses working alongside volunteers in the region. Typically, the health workers at Health Centres II, III, and IV see patients before they are referred for specialized care. Therefore, it is understandable that the health workers at lower health facilities are familiar with the conditions that patients in the community face. In this program, these health workers play a vital role, as they refer patients to higher-level hospitals, maintain records, and follow up on care. As patients return to the community, the nurses stay in contact; they conduct community outreach and perform home visits. They maintain constant communication with the families. They keep records of treatment cycles and support caregivers by reminding them to adhere to treatment. They provide necessary transportation, information, and encouragement.

What are the achievements and lessons so far?
From May 2020 to December 31, 2024, a total of sixty-one children have been enrolled in the SHiNE Child Program. Only two of these children had been lost to follow-up due to the migration of their families. Otherwise, they would have been in their homes. A total of twelve children had achieved remissions, and a total of twenty-two children were still receiving treatment. Twenty-three children had passed away, and all families had received belief services by the program. Two had unknown outcomes, and several awaited diagnostic confirmations. The community navigation structures eased caregiver burden, reduced costs, and improved treatment adherence. However, ongoing challenges included inadequate post-treatment nutrition, disrupted education, and persistent community stigma.

How can compassionate people support the program?

In communities where poverty casts a long shadow, the SHiNE Child Program becomes a lifeline, addressing not just physical ailments among the children but also the social isolation, stigma, injustice, and despair that families face daily. Your contribution, regardless of size, becomes a beacon of hope, lighting the path toward compassionate care for children and families in need in Uganda. Should you wish to contribute, please https://www.globalgiving.org/projects/shine-child-program/ use the link SHiNE Child Program - GlobalGiving or click here https://www.globalgiving.org/projects/shine-child-program/

In communities across Uganda, children battling cancer and other life-limiting illnesses face overwhelming challenges. Their families struggle with the costs of medical care, transportation to hospitals, and even basic necessities like food. Many parents must make impossible choices—whether to pay for treatment or provide for their families. This is where the Special Hearts to Nurture Every Child (SHiNE) Child Program steps in, ensuring that no child fights alone.

Since its inception, SHiNE Child Program has supported 61 children and their families, providing critical financial aid for medical investigations, diagnosis, hospital transport, and meals during treatment. Beyond the hospital, we continue to walk alongside families, offering social support, home visits, and essential items to help ease their burdens. Even in cases where we have lost children, we ensure that we have provided care, and that their families receive bereavement support, keeping their dignity and memory honoured.

Currently, the program supports 36 children, with 10 in remission, 20 undergoing treatment, 04 awaiting investigation results, and 02 whose whereabouts are being traced by the team. Between November 2024 and March 2025, we made significant strides in ensuring continued support for these children.

Looking ahead 2025 with your continued support, our focus is on sustainability, deeper community engagement, and holistic support. We aim to: Empower families through income-generating skills to help caregivers support their children’s ongoing treatment and daily needs. Enhance peer support groups by organizing quarterly gatherings where children and caregivers can share experiences, receive emotional support, and access free medical consultations. Create a child-friendly environment by establishing a play area at Kitagata Hospital, ensuring that children undergoing treatment can still enjoy moments of joy and normalcy. Improve treatment adherence by increasing home visits, ensuring that children complete their care regimens, and providing medical check-ups directly in their communities. Address malnutrition by integrating nutrition support, offering meals during hospital stays, and educating families on affordable and nutritious food options.

While we have made significant progress, challenges remain. Treatment abandonment is a growing concern, as some caregivers shift focus back to income generation once their children show signs of improvement. Malnutrition also continues to threaten treatment success, making nutrition support a top priority for this year.

Through increased follow-ups, better community education, and sustainable income opportunities for families, we believe we can bridge these gaps and create lasting impact.

The SHiNE Child Program is more than just a medical support initiative—it is a lifeline for children and families in desperate need. With your continued support, we can expand our reach, improve treatment outcomes, and give every child the opportunity to heal, grow, and thrive. Together, we can create a future where no child is left behind. Thank you for standing with us. We hope you can stand with during the Little by Little Campaign March 25-28, 2025.

Links:

• https://pcauganda.org//?s=SHiNE

• SHiNE_Child_Program_photo_March_.pdf (PDF)