Dr Nick Brown who is global health editor at Archives of Disease in Childhood (ADC) recently interviewed Professor Julia Downing who is the Director of Education and Research at The International Children’s Palliative Care Network(ICPCN) and Chair in Palliative Care at the Makerere University in Kampala, Uganda. Julia, alongside colleagues in the children’s palliative care recently wrote a research paper on ‘Children’s palliative care in low and middle income countries’.
The interview opens with Julia giving an indication of the global burden of children’s palliative care. “The global burden of disease is high specifically in the area where I am based, in Sub-Saharan Africa there are many children needing children’s palliative care but that’s partly due to the high numbers of children with HIV.”
Julia discusses various barriers to children’s palliative care including: a lack of understanding of children’s palliative care and its benefits to the child and family, a lack of training and education, a lack of access to essential medicines and lastly a lack of policy and integration into health system. Julia emphasized “if children’s palliative care isn’t included in that country’s policy, it will not be a priority for that government.”
There are three children’s palliative care systems situated in Malawi, Belarus and Indonesia that have proved to be successful. In Malawi, the adult and children’s palliative care programme that was started in 2001 was integrated into the Queen Elizabeth central hospital. The programme sees about 500 children every year. In Indonesia children’s palliative care began as an inpatient unit but with the increase in demand for care at home, there has been a shift in focus to home based care. Care in this area is very innovative with nurses taking the lead but still working closely with the rest of the multi-disciplinary team. The Belarusian Children’s Hospice was developed in 1994 with a focus of providing care at home. “They have a very interesting programme for psychological and social care for children and young adults. They have about 250 children under their care at any given time, which unfortunately only 15% of the children needing care,” said Julia.
Julia commented that “the future is looking better for children’s palliative care, the World Health Organization based a resolution for palliative care in 2014 and we have found that different countries and NGO’s are asking for support to develop children’s palliative care services in their country.” To listen to the full interview, please click here. For the full paper, click here.