Opening today’s plenary on the final day of the Hospice Palliative Care Association of South Africa’s (HPCA) annual conference, the International Children’s Palliative Care Network’s (ICPCN) Chief Executive, Joan Marston, says that children with palliative care needs are often hidden and become ‘invisible’ within the country’s healthcare system.
The conference, taking place in the warm and friendly harbour city of Durban on the east coast of South Africa, has focused on the World Hospice and Palliative Care Day theme of ‘Hidden lives, hidden patients’.
“Children are particularly vulnerable to being hidden,” said Marston,who described the reasons for this in South Africa as including:
- children with disabilities are often stigmatised and hidden from society by their embarrassed families;
- the voice of the child is not respected;
- poverty and geographical location prevents them from accessing services; and
- many parents who are not aware of their child’s rights and do not feel empowered to speak up on their child’s behalf.
She went on to say that despite their legal entitlement to the best healthcare possible, as laid out in the 2014 WHO Resolution on Palliative Care (WHO 67.19) and within the UN Convention on the Rights of the Child, health care systems and professions are still guilty of making children with palliative care needs invisible by not always identifying them. She explained that while many South African hospice services provide excellent care for children with HIV , with TB and for Orphaned and Vulnerable Children (OVC’s), they are not consistently identifying and caring for children who may have one or more of the possible 700 plus rare diseases and conditions for which palliative care for children would be appropriate. Other ‘hidden’ patients mentioned were neonates, the parents of stillborn children and those who are living in the country as refugees.
“People don’t want to think about a child dying, so we wrap them in silence,” said Marston.
Conference delegates were challenged to listen to the voice of the child by learning to speak their languages including body language, play, and artistic expression. They were asked to acknowledge that children are spiritual beings who deserve to have their difficult questions answered with sincerity and honesty, be given opportunities to connect with nature and that which is sacred and significant to them and who also deserve the gift of an adult’s ‘total presence’ as they face their individual and unique challenges.
She encouraged adults who wish to become advocates for children to join the ICPCN, to join PATCH-SA, the national children’s palliative care network, and to work on persuading potential funders of the urgent need for children’s palliative care provision in this country.
Statistics from recent research carried out by ICPCN and UNICEF estimates there to be over 600,000 South Africa children in need of a palliative care approach, with more than 200,000 of these requiring specialised palliative care. At present, less than 5% of these children are being reached.
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