title: Development and pilot evaluation of a home-based palliative care training and support package for young children in southern Africa.
abstract: BACKGROUND
  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. 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.
  
  
  METHODS
  This 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.
  
  
  RESULTS
  Because 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.
  
  
  CONCLUSIONS
  A 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.
authors.affiliation: Human Sciences Research Council, Human & Social Development Programme, 5th Floor, The Atrium, 430 Peter Mokaba Ridge, Berea, Durban, South Africa. snaicker@hsrc.ac.za.|WITS/MRC Developmental Pathways for Health Research Unit, Department of Paediatrics, Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa. snaicker@hsrc.ac.za.
authors.forename: Sara Naomi
authors.initials: SN
authors.lastname: Naicker
authors.affiliation: DST-NRF Centre of Excellence in Human Development, University of the Witwatersrand, 1 York Road, Parktown, Johannesburg, South Africa.|Human Sciences Research Council, 5th Floor, The Atrium 430 Peter Mokaba Ridge, Berea, Durban, South Africa.
authors.forename: Linda
authors.initials: L
authors.lastname: Richter
authors.affiliation: Department of Psychiatry, University of Oxford, Oxford, OX3 7JX, UK.|Wits/MRC Rural Public Health and Health Transitions Research Unit [Agincourt], School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.
authors.forename: Alan
authors.initials: A
authors.lastname: Stein
authors.affiliation: School of Clinical Medicine, University of KwaZulu-Natal, Durban, South Africa.
authors.forename: Laura
authors.initials: L
authors.lastname: Campbell
authors.affiliation: International Children's Palliative Care Network, Assagay, KwaZulu-Natal, South Africa.
authors.forename: Joan
authors.initials: J
authors.lastname: Marston
mesh_terms: D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D015658:HIV Infections / Q000523:psychology / Q000628:therapy; D006699:Home Care Services / Q000592:standards*; D006801:Humans; D007223:Infant; D010166:Palliative Care / Q000379:methods*; D010865:Pilot Projects; D016730:Program Development; D015397:Program Evaluation; D011787:Quality of Health Care; D013019:South Africa; D013663:Teaching / Q000592:standards*
keywords: Caregiver; HIV; Home-and community-based; Paediatric; Palliative care; Southern Africa; Young children