This article, taken from the World Hospice and Palliative Care Day report, available for download from the Worldwide Hospice Palliative Care Alliance website, looks at the hidden and harrowing lives of children who suffer and often die from malnutrition in Malawi. Some of these children are at least fortunate enough to be cared for by dedicated staff from Umodzi, a children’s palliative care programme based at Queen Elizabeth Central Hospital in Blantyre.
According to Dr Cornelius Huwa, clinical lead at Umodzi, many of the children they see with malnutrition have complex social backgrounds and are poor.
“For children with recurrent malnutrition, it is often due to neurological damage, which affects their ability to feed, thus putting them at risk of developing severe malnutrition. Therefore palliative care should help the child and family to prevent malnutrition where possible or facilitate support when it occurs,” he says.
Umodzi children’s palliative care is based at Queen Elizabeth Central Hospital in Malawi. It started in 2002 and endeavours to improve the quality of life of children and their families needing palliative care. The clinic recognises the need to work with caregivers and the wider community thus a home based care programme has been the supporting backbone to the community related efforts by Umodzi clinic.
With the presence of three dedicated nurses, one clinical officer, one doctor and two play therapists, Umodzi has been able to provide skilled counselling, symptom control, empowerment of family members, organisation of discharge and linkage with home based care. Patients seen at Umodzi come from all over Malawi and home visits are carried out in the southern region.
The programme reaches about 500 patients per year and sees about 30-40 new patients per month. 5% of Umodzi’s patients have malnutrition of various degrees. Many of the children that are seen with malnutrition are those with cerebral palsy and other neurological challenges, and those with severe HIV disease. These children present with complex symptoms and social problems.
Providing palliative care to malnourished children is at the core of Umodzi’s business. Umodzi helps the caregivers to understand the illness and symptom management, empowers them to care for the child and links them to social support systems in the community. Umodzi continues to champion children’s palliative care and spearheads mentorship and transfer of skills to other providers from district hospitals from all over Malawi.