27/04/2026
Ocen (not his real name), aged 12, was identified at Lira Regional Referral Hospital by a palliative care nurse. What she encountered was a story all too familiar, yet deeply troubling.
Ocen was the primary caregiver in his family. His mother was blind and chronically ill, and his younger brother was also very sick. Each day, Ocen took responsibility for escorting his mother and brother to access anti-retroviral treatment, tuberculosis medication, and Morphine (pain relief medicine), while also trying to find ways to provide food for the family. At an age when he should have been in school, his life revolved around survival.
He had dropped out of school and spent his days doing labour-intensive work, including crushing stones and digging in people’s gardens, just to provide for his family. They lived in extreme hardship, displaced and sheltered on a small piece of land temporarily offered by a kind neighbor, with a fragile structure made of mud, scrap timber, and iron sheets. Their survival depended largely on the goodwill of others.
Without intervention, Ocen’s future and that of his brother were at risk of being defined by poverty, interrupted education, and continued vulnerability.
Through a palliative care nurse, the family was later linked to the Palliative Care Association of Uganda (PCAU), where Ocen was enrolled on to the Road to Hope (RTH) Program. From that moment, things began to change. Ocen began receiving support to return to school, along with scholastic materials, healthcare, and psychosocial support. The family also received assistance in securing land and building a more stable home, restoring a sense of dignity and safety.
With consistent follow-up and support, their situation steadily improved.
Now in Senior Four, Ocen is back in school and progressing well, while his brother is also receiving the care he needs. The burden he once carried alone has been eased, allowing him to begin reclaiming his childhood and future.
Philomena, the palliative care nurse who first encountered Ocen, has remained part of this journey, ensuring continuity of care and support for the family.
The 2016 National Household Survey reports 24,063 child-headed households in Uganda, underscoring the scale of vulnerability. In many of these homes, children become primary caregivers, supporting sick parents, accessing treatment, and working to survive. Ocen’s story shows the reality of many children across Uganda who quietly take on caregiving roles for parents and relatives living with life-limiting illnesses. These children often fall outside traditional protection systems, their struggles unseen despite the weight of responsibility they carry.
The Road to Hope (RTH) Program, established in 2012 through a partnership between the Palliative Care Association of Uganda (PCAU) and the Center for Hospice Care (USA), was created in response to this hidden and often overlooked crisis.
The program supports orphaned and vulnerable children, particularly those who have become primary caregivers for parents or guardians living with life-limiting illnesses. Since its inception, the program has supported 112 children by providing access to education, healthcare, psychosocial support, and protection, helping them move from survival to stability and opportunity.
Supporting child caregivers is not only a matter of service delivery, but it is also a matter of dignity and justice. With timely and compassionate support, children like Ocen can move beyond the burdens they were never meant to carry and begin to build positive and hopeful futures. ~Anita Balikobaku
Be part of restoring hope and dignity to child caregivers. Donate now to empower child care givers in Uganda .
Your contribution goes beyond financial assistance; it creates positive change in the lives of vulnerable children and their families. Support through Global Giving: https://pcauganda.org/the-road-to-hope-program/
For more information about the Road To Hope Program visit; PCAU Website: https://pcauganda.org/new-progress/road-to-hope/
https://www.globalgiving.org/projects/pcauganda-org-road-to-hope/
