Strengthening Pediatric Palliative Care in Uganda: New Hope Children's Hostel
Table of Contents
Objective
In Uganda, it's estimated that 7,000 children are affected by cancer each year, as reported by the medical registry at the Uganda Cancer Institute (UCI). Shockingly, only 55% of these children survive annually, while in developed countries, 80% of children with cancer are cured. This underscores the urgent need for collective efforts to reduce the impact of cancer in Sub-Saharan Africa. To address this pressing issue, Kawempe Home Care (KHC), a non-profit community-based healthcare organization in Kampala, established the New Hope Children's Hostel in September 2016. Our primary mission is to provide palliative care for children with cancer who are receiving treatment at UCI. Through our hostel, we aim to mitigate the impact of childhood cancer by enhancing access to specialized care for underprivileged children from all corners of Uganda.
Method
New Hope Children's Hostel focuses on accommodating underprivileged children from rural areas who are receiving cancer treatment at UCI but cannot be accommodated at Mulago Hospital due to capacity limitations. Central to our mission is pediatric palliative care. We collaborate closely with UCI to identify families in need of our services. KHC offers a child and one caretaker (usually a relative) with free accommodation, meals, psychosocial support, and daily transportation to UCI. Our psychosocial support includes counselling, spiritual care, informative sessions for children and caretakers, and engaging children in play and music therapy. Pain management is carried out by our medical staff through the proper administration of morphine and other medications prescribed by UCI. Using the MUAC scale, we identify children with severe acute and moderate malnutrition and provide them with a specialized diet. In case of emergencies, we offer first aid and arrange for immediate transport to UCI for further medical care. Children who have been discharged from UCI and require palliative care are linked to nearby hospices in their villages for pain management.
Results
From September 2016 to June 2019, the New Hope Children's Hostel at KHC hosted 414 children and their caregivers. Follow-up studies reveal that 110 children have successfully completed their cancer treatment and are now on quarterly routine medical reviews, while 10 are receiving palliative care at home. Currently, 195 children are still undergoing cancer treatment, and regrettably, 99 children have passed away. An assessment of the psychosocial well-being of children and caregivers using the Palliative Outcome Scale (POS-C, APCA, 2012) indicates that the overall disease-related quality of life of our clients improved during their stay at KHC.
Conclusion
Our analysis underscores the critical need for comprehensive palliative care services in pediatric oncology. The establishment of patient hostels, such as the New Hope Children's Hostel, offers a promising solution to bridge the care gap, providing specialized care for underprivileged children in Uganda. Together, we can work towards a future where every child has equal access to the care they deserve.
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