Developing children's palliative care in Africa through beacon centres: lessons learnt.

Julia D Downing,Joan Marston,Laura Ross-Gakava,Casey Selwyn

doi:10.1186/1472-684x-12-8

Abstract

Much progress has been made in the provision of palliative care across sub-Saharan Africa, however much still remains to be done, particularly in the area of children’s palliative care (CPC). The Beacon Centres programme was set up in 2009, aimed at improving access to CPC in South Africa, Uganda and Tanzania through more and better-trained health professionals and CPC clinical services of a high standard. Having identified sites in each country to develop into CPC Beacon Centres, Navigators were identified who would be the ‘champions’ for CPC in those sites and lead a programme of training, mentorship and support. Five navigators (2 in Uganda and Tanzania and 1 in South Africa) were trained between September and December 2009. Following this they undertook CPC needs assessments at the 3 centres and set up and delivered a six-month CPC training programme, providing mentorship and support to students to enable them to integrate CPC into their workplaces. To date, 188 participants have commenced the six-month course, with 80 having completed it. CPC has been integrated into the activities of the centres and a CPC virtual resource centre set up in South Africa. The achievements from the Beacon project have been great and the work of the navigators immense, but as in all projects it has not been without its challenges. Lessons learnt include issues around: the focus of the project; the length and nature of the training; assessment; accreditation; the choice of navigators; mentoring; administrative support; co-ordination; the choice of project sites; and the integration of CPC into services. The need for CPC is not going to go away and it is therefore important that models of scaling-up are found that are not only practical, feasible, affordable and sustainable, but that focus on the outcome of improved CPC for all those who need it. It is hoped that the lessons shared from the Beacon Project will help in developing and implementing such models.

Highlights

Palliative care provision within sub-Saharan Africa (SSA) remains for many, a relatively new concept
Key to the development of a training strategy is the development of programmes that are suitable for the range of individuals needed to support the integration of children’s palliative care (CPC) e.g. managers, health professionals, specific CPC champions etc
Ongoing mentorship and supervision is vital with placements that enable students to implement what they have learnt

Summary

Introduction

Palliative care provision within sub-Saharan Africa (SSA) remains for many, a relatively new concept. Where there were limited or no children’s palliative care services one existing organisation working with children developed as a beacon centre in each country i.e. Mildmay in Uganda (where Hospice Africa Uganda had a limited children’s palliative care programme) and PASADA in Tanzania. Both models were included as it is important to develop services where none exist, and to support ongoing expansion of services where they do exist and enable national co-ordination of service development and training. In the long term improved CPC will only take place if the employing institutions themselves are prepared to change their policies and practices

Conclusion

Findings

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