Assessment of the need for palliative care for children in South Africa

Abstract

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries' capacities to deliver children's palliative care (CPC). This report concerns the findings from South Africa. The study adopted a cross-sectional mixed-methods approach using both quantitative and qualitative data obtained from primary and secondary sources. CPC need was estimated using prevalence and mortality statistics. The response to the need and existing gaps were analysed using data obtained from a literature review, interviews with key persons, and survey data from service providers.The findings show very limited CPC service coverage for children in the public sector. In addition, services are mainly localised, with minimal reach. Less than 5% of the children needing care in South Africa are receiving it, with those receiving it being closer to the end of life. Barriers to the delivery of CPC include fear of opioid use, lack of education on CPC, lack of integration into the primary care system, lack of policies on CPC, and lack of community and health professional awareness of CPC needs and services. Estimating the need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage.

Children's palliative care in low- and middle-income countries

“…A number of barriers and challenges associated with palliative care development—centred on policy, education, medication availability and implementation17—have been identified for CPC in LMICs, including a fear of opioid use, lack of specialist education, lack of policies, lack of integration into the health system and a lack of awareness of its need and available services 11 18 19…”

“…Lack of policies is a challenge to palliative care development generally; but even where they exist the focus tends to be on adults rather than on children 11 18 20. Similarly, CPC education is needed at all levels,21 22 with a key gap being specialised CPC training11 along with basic training, both identified as core within the WHA resolution.…”

“…These include a study on presenting symptoms in children referred for palliative care in Malawi,28 the needs of HIV-exposed and infected children in Uganda34 and lessons learnt through the development of beacon centres in Tanzania, Uganda and South Africa 48. A recent study to identify the need for CPC, assessing provision and its gaps in three countries—Kenya, South Africa and Zimbabwe—is part of a wider study to estimate global need for CPC 18 20. Through this study the methodology is being refined and used in a range of other LMICs prior to the development of a global estimate of paediatric palliative care need.…”

ecancermedicalscience

“…A study carried out by UNICEF and the ICPCN recently looked at the need for children’s palliative care in Kenya, South Africa, and Zimbabwe [11]. Building on from the work of the Atlas, along with work by Fraser et al [12], this study looked at need based mainly on prevalence data.…”

“…Both of the following studies addressed this area with Dr Richard Hain (UK) discussing the development of a Directory of Life-limiting conditions and how it can be used, along with its limitations. This was followed by a presentation of the results of a study conducted by UNICEF and ICPCN on the development of a methodology for estimating the need for palliative care, sharing results from Kenya, South Africa, and Zimbabwe [11]. The presentations evoked much discussion and delegates were keen to ask questions and discuss the next steps.…”