South Africa has one of the highest rates of child abandonment in the world, (10 000 per year), one in three of them dying – while Covid doubled the number of abandonment fatalities.
Sixty percent of abandoned children perished during Covid lockdown, according to Tarryn Bell, who with her husband Christoff, started the Butterfly Palliative Home in Ingwavuma, northern KwaZulu-Natal, writes Chris Bateman for MedicalBrief.
Bell cited Baby Savers SA, a coalition of NPOs and PBOs, for her statistics. She helps run the first and only registered children's hospice in KZN where they provide end-of-life care to young children with severe disabilities and life-limiting conditions.
She said 3 500 South African children survived abandonment annually, with the most vulnerable being those with life-limiting conditions. This was due to the lack of child palliative care facilities and lack of knowledge regarding the need for palliative placement.
Both led to unsuitable alternative placements and secondary neglect, she said.
According to The Voiceless SA, an NPO lobbying for changes in legislation and policy for SA’s vulnerable children, 90% of abandoned children are under one-year-old, often consisting of newborns, unsafe abandonments, and premature infants, due to illegal and/or self-induced abortions.
Bell said a review attempting to answer the question of why so many children were also being abandoned after turning one, showed a distinctive pattern, especially among children suffering from life limiting or threatening conditions.
“It starts with a lack of diagnostic/curative interventions leading to an increased financial burden. If a life threatening or life-limiting condition is then confirmed it results in a prolonged burden of care, an increased psychosocial and financial burden, caregiver burnout and finally, abandonment,” she told delegates to the national Palliative Care Conference in Cape Town recently.
Bell says temporary safe or foster care parents in South Africa are not up to the task or sufficiently equipped, while child protection social workers “do not understand the concept of child palliative care.”
The healthcare system demanded numerous appointments – costly in time and money – and there was confusion with conflicting information available, while the attitudes of healthcare professionals left much to be desired.
Sue Boucher, communications and project manager for Palliative Treatment for Children South Africa, (PatchSA), which provides palliative care to an estimated 800 000 children with life-limiting conditions, (and their families), said they were dealing with “a huge need.”
“There are an estimated 1m that need generalised palliative care with less than five percent accessing services – and just five organisations whose services are dedicated to providing child paediatric care across the SA – three with inpatient units. (The UK with comparable population has more than 55).
There is little to no government support for these services – so fundraising is an imperative. The need for integration of generalised paediatric palliative care is enormous,” she said.
PatchSA received funding from Discovery Health to develop a ‘Bettercare’ book to roll out face-to-face training on children’s palliative care in four provinces in 2018, in conjunction with two palliative care NGOs and two hospices. However, just as a pilot training course was beginning at the Knysna Sedgefield Hospice, the first case of Covid in SA was announced. Lockdown prevented any further training.
In March 2021, the Patch Academy launched 12 online training courses covering key elements of paediatric palliative care, and has since developed a perinatal palliative care course, accredited with Continuing Professional Development, CPD, points. Boucher says this has generated 1 888 orders with 1 147 healthcare professionals having completed the courses. It was now also compulsory for all fourth-year medical students at the University of KwaZulu Natal and sixth-year medical students at the University of Cape Town to complete the course.
Wits Hospice social worker Penelope Mathe told the conference that a study conducted in the KwaZulu-Natal Children’s Hospital, backed by other global studies, concluded that children were concerned that there were no formal channels through which they could voice their needs and grievances, and that the avoidance of conversation about impending death by adults created a sense of isolation, fear, and anxiety.
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