Kathryn (Kat) Kostolansky first learned of the partnership between Center for Hospice Care (CHC) and Palliative Care Association of Uganda (PCAU) while taking the Introduction to Hospice and Palliative Care class that CHC
co-teaches with The Ruth M. Hillebrand Center for Compassionate Care in Medicine at the University of Notre Dame. She took the class out of a desire to learn more about palliative care – a service she had some firsthand experience with as a caretaker for an ill family member. This interest, along with her strong application, landed her an internship working with CHC and PCAU during the spring and summer.
The focus of Kat’s internship was the Road to Hope program, a collaborative effort between PCAU and CHC, established to support child caregivers of palliative care patients. The program supports education for vulnerable children who are identified by palliative care practitioners. The program not only provides tuition and scholastic materials but also provides social support and life skills development through regular visits and an annual camp and retreat. The program currently supports 58 children, most of whom are in primary school, with some in secondary
and vocational school.
There has been significant growth in the program since it started seven years ago. Not only has the number of children grown but so has the support and programming offered to those in the program. Before spending two months in Uganda, Kat conducted research on other child sponsorship programs to help us assess best practices and opportunities to further develop the Road to Hope Program.
Her time in Uganda was spent learning more about the program and working closely with the PCAU team to develop frameworks, documentation and tracking of the children in the program. This includes keeping up with their current needs as well as documenting their family trees and helping secure birth certificates where needed. Keeping the children connected to their families and communities is a core component of the Road to Hope program.
Being in Uganda allowed her to not only read about the children in their files but to experience what their daily lives are like in person. With the PCAU team, Kat was able to visit many of the children, as well as meet their guardians and visit their schools. Kat reflected on her first visit to one of the schools.
“The first school that we visited was a primary school that happens to have many of our RTH children. The staff at the school seem to be incredibly involved, so PCAU is looking forward to bringing more children there in the future. All of the children said wonderful things about the school itself too. We sat in a circle and talked for a while, checking in on them and asking if there is anything that they need that they do not have. It was heartbreaking for me to realize that, at this boarding school, there were children sleeping without mattresses and blankets. A particular boy in our program asked for a pair of shoes, so we looked at his and they were falling off of
his feet because they were so worn through.”
The work Kat did is going to help the program organization so that PCAU staff can keep up with all of the children and help assure that all of their needs for school will be met. These structures will also help the Road to Hope continue to grow successfully.
