SHiNE Child Program

Brief about the background.

The Special Hearts to Nurture Every Child Program- SHiNE Child Program is a child cancer care navigation project by the Palliative Care Association of Uganda (PCAU). It was established in 2020 during the COVID-19 pandemic lockdown to support children facing cancer and other life-threatening illnesses to access, start, and continue comprehensive care and treatment.

In Uganda, many children who receive a diagnosis of cancer may not end up at the Uganda Cancer Institute (UCI) to start treatment or may abandon the treatment upon commencement due to several reasons.  The World Health Organization (WHO) reports that approximately 700 of the 3,000 children in Uganda who receive a cancer diagnosis report to UCI annually.  The majority remain in the communities. The UCI reports that about 30% of all children who enroll in care abandon treatment annually. The main reason for abandonment is financial difficulty. Still, other factors include other obligations, the child appears cured, preference for alternative therapies, the belief that cancer is incurable, fear of the child's death, and chemotherapy side effects among others.

Brief on the outcomes of the interventions

To help bridge the gap in treatment abandonment among children suffering from cancer, PCAU commenced the SHiNE Child Program in an area covering 5 districts in Southwestern Uganda. According to Uganda’s most recent population statistics, the 5 districts of Bushenyi, Buhweju, Rubirizi, Sheema, and Mitooma are inhabited by a total of 1,095,734 people.

The program has been impactful in the lives of many children and their families in this area. Since its inception, the Program has supported 59 children and their families. According to the Uganda National Survey Report 2019/2020, an average household has at least 5 persons. This means that our intervention since 2020 has touched 295 people and more.

To date, there is a total of 36 children in the SHiNE Child Program. 10 children are in remission, 20 children are undergoing treatment, 4 children await investigation results, and 2 children are being followed up by the project team to continue with their treatment. 

Brief on program interventions

The program supports children under the following major interventions;

• Supporting screening /investigations and required diagnosis for children.
• Supporting transport needs, referral, moral support, and other navigation needs for enrolling and continuing cancer treatment.
• Offering psychosocial support, social assistance, child protection services, and basic needs support including food, medical sundries, beddings, and clothes for children from indigent families.

Program Impact

Our intervention is transforming lives. Let us share with you a story about Beth as an example.

Beth (not real name) is a 10-year-old, who is currently receiving education support from the SHiNE Child Program. Beth lives with her sick mother and two siblings. Their father died three years ago due to HIV/AIDS. Beth’s youngest sibling of 5 years is always sick and the family members do all they can to support one another. The mother in this home must fend for her family. But she is not so strong. She was bedridden a while ago. Her younger daughter is always sick and that takes a toll on her too.

Their father had relocated the family to a new place before his passing and the family had not built a stable house yet. So, they live in a small mud and wattle house that needs improvement.  Beth loves going to school. Amidst all that was happening, she would leave home to attend school even when the family could not afford her fees or any school requirements. It is a member of the Village Health Team (VHT) who was following up on the state of her mother who brought Sarah to meet the SHiNE Project team at Kitagata Hospital. As a result, last year we visited Sarah's home. The family lacked basic needs, food, bedding, clothes, mosquito nets, cooking utensils like saucepans, etc.. The program provided these.

Beth was further supported by the SHiNE Child Program to start school formally. This came as a great relief to her mother. The mother has been gaining mental health stability since then. She is also able to do more. Beth’s educational requirements have been handled by the SHiNE Child Program and she is very glad. She said that she wants to be a teacher when she grows up.  Beth is now among the child caregivers that the program is seeking sponsors. She looks like a bright girl. We can only support her with hope and belief that she will exploit her full potential.   

This year, the team conducted a school visit to follow up on her well-being at school. During the visit, Beth ran to greet us with a smile on her face. The support to Beth is great to the family afflicted with serious illnesses. Her mother can mind the youngest daughter who is in and out of hospitals without big worries about Beth who is in school and receiving all the needed support from the SHiNE program. The program also supports all the navigation needs for Beth’s youngest sibling. The family has hope now.

Beth’s teacher said to us last month; “Beth used not to smile during her first days at school, but today, she can smile and play with other pupils,” Teacher Scovia, Beth’s class teacher shared about her status in school.

Beth has to keep in school and so PCAU is seeking out for compassionate sponsor for her education.

There are still some Challenges that we are working on:

We are proud to report that the SHiNE Child Program has made significant progress in ensuring that children battling illnesses have access to holistic care and treatment. However, we have realized that we need more donations and support. These mainly concern the scope of our work.

We have realized that we need to increase the number of visits to each of the families where children on the program come from. Whenever children feel a little better in the course of treatment, the parents choose to refocus on fending for the families in the garden and abscond from treatment schedules. We so far have 2 children we are following up. Monthly visits to the families will create more meaningful relationships with them and ensure continuous psychosocial support which is important. This means the palliative care team at Kitagata Hospital needs to move more to families.

We have also realized an increased demand for nutrition support for children who are undergoing cancer treatment. The children from the indigent families really need more support. We are spending $80 and more per month for half of the children in the program only on nutritional support. Yet investigations, transport, and basic needs require nearly the same amount of money for each child. This is starching our costs a bit.  

As we shared the story about Beth, educational support for children on the program and their siblings is such a great imaging need. Cancer care and treatment in Uganda is so costly. Some families lose nearly all their income and sell their land to afford the treatment.  The families of 10 of our Children who are in remission are facing financial constraints to enroll in school to start/continue their academic pursuits.

We are fully committed to continuing our work and finding strategies to better support the children battling illnesses to address these challenges.

Thank you!

Our acknowledgment and heartfelt gratitude go to our friends, partners, and stakeholders for all the support rendered to the SHiNE Child Program. Your contributions have helped children to access quality of life and their families the resilience to bravery face their treatment journeys as well as bereavement.

Your generosity continues to help us bridge the existing gaps to ultimately improve the lives of children with cancer and other life-threatening illnesses as well as their families. As the SHiNE Child Program, we pledge to continue nurturing every child to thrive by ensuring access to comprehensive care and treatment.