Abstract
BackgroundThe leading cause of death among young children in southern Africa is complications due to HIV infection and, in South Africa, over a third of all deaths of children younger than five are associated with HIV infection. There is a great and urgent need for children’s palliative care in Africa, whether HIV-related or not. It is often not possible for sick children and their carers to attend clinics and hospitals cannot accommodate children for long periods of time. As a result children are often cared for in their own homes where caregivers require support to provide informed and sensitive care to reduce children’s suffering. Home-care places a heavy burden on families, communities and home- and community-based care workers.MethodsThis project involved the development and pilot evaluation of a training and support package to guide home and community-based care workers to help caregivers of seriously ill young children at home in southern Africa. A number of research methods were used, including a cross-sectional survey of content experts using the Delphi technique, participatory action research with photo elicitation and qualitative thematic analysis.ResultsBecause the palliative care needs of these children are complex, the package focuses on delivering 9 key messages essential to improving the quality of care provided for young children. Once the key messages were developed, culturally relevant stories were constructed to enhance the understanding, retention and enactment of the messages. The various research methods used, including literature reviews, the Delphi technique and photo-elicitation ensured that the content included in the package was medically sound and culturally relevant, acceptable, feasible, and comprehensive. The end product is a home-based paediatric palliative care training and support package in English designed to help train community workers who are in a position to support families to care for very sick young children at home as well as to support families in looking after a very sick child.ConclusionA pilot study to assess the training and support package found it to be useful in delivering the key messages to caregivers. The training component was found to be feasible. It is concluded that the package offers a practical means of integrating palliative care with home-based care. Further implementation and evaluation is needed to establish its utility and impact.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0114-7) contains supplementary material, which is available to authorized users.
Highlights
The leading cause of death among young children in southern Africa is complications due to HIV infection and, in South Africa, over a third of all deaths of children younger than five are associated with HIV infection
The sub-specialty of paediatric palliative care focuses on this holistic, ongoing care for very ill, dying and bereaved children and their families in order to achieve the best quality of life for children living with life-threatening illnesses
We describe the development of a palliative care package for the homecare of young children, most of whose lives are limited by untreated HIV or delayed HIV treatment, which can be tailored to suit various service delivery mechanisms
Summary
The leading cause of death among young children in southern Africa is complications due to HIV infection and, in South Africa, over a third of all deaths of children younger than five are associated with HIV infection. Not all sick children reach a healthcare facility; long distances, limited transport and poverty restrict access to hospitals where paediatric HIV care is provided [6]. Of those who are admitted to a hospital, many are discharged when no further advantage of hospital care is seen, and sick children are cared for in their own homes. This places a heavy burden on families, communities and home- and community-based health and social care workers to ensure sensitive and competent care to minimise suffering and maximise the quality of life of young children and their families. Some home-based programmes lack support and supervision by professionally trained palliative care providers [9], and only a small number of HCBC workers have been trained in both home-based care and children’s palliative care in South Africa
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