22 February 2018
Project: Development of Nurse Leadership for Palliative Care in Uganda
Partners: University of Edinburgh | Makerere University | Palliative Care Association of Uganda (PCAU)
When: March 2015 – February 2017
The World Health Organization (WHO) defines palliative care as physical, psychological, social and spiritual care and support for patients with life threatening illnesses and their families. Over 40 million people need this treatment every year, yet 86% do not receive it despite such care being advised from diagnosis until bereavement to ease pain and give patients dignity during their suffering. This is often due to insufficient knowledge and skills and the limited capacity of health workers to provide this care.
In low-resource settings, such as Uganda where expenditure on health is substantially lower than the global average at $133 per capita, it is remote areas, where 75% of the population reside, that continue to feel the scarcity of health care initiatives. Uganda, however, has a much longer history of palliative care than many African countries. Initially introduced in 1993 Uganda has continued to see marked developments in uptake and practice, becoming a study site for many other nations. Since 2004, Uganda has become a leader in the nurse-prescribing role of pain relieving morphine, which the Ministry of Health has now made freely available, greatly increasing the provision of pain management throughout the country.
This project aimed to establish nurse leaders for palliative care in Uganda. Nurses in Uganda have an important role to play in the provision of palliative care due to the low number of doctors, particularly in rural settings, but also as a key part of multidisciplinary management. By developing nurse leaders it was hoped that the project will support the ongoing development and leadership of palliative care within the country, and ultimately improve the quality of life of those needing palliative care.
The “Development of Nurse Leadership for Palliative Care in Uganda” project aimed to develop the nurses’ leadership role within their own settings (e.g. hospital, community, NGO) as well as at a national level. Throughout the project the nurses were encouraged to put into practice what they had learnt and were provided with mentorship and support supervision to enable them to do so through local and international (UK) mentors.
Activities and the role of nurses
At the beginning of the project, the nurses were asked to identify areas for development and to write action plans for what they would like to achieve. These action plans focused on what they could do and learn within their own places of work and helped them develop their leadership role within their own organisations. They were provided with ongoing mentorship and supervision throughout the duration of the project to help them develop as leaders in their workplace.
Because nurses have at times struggled to demonstrate their leadership capacity due to non-leadership issues such as the lack of colleagues to work with, technical support, or even funds to undertake the projects and time, one of the goals of this programme was to enable the nurse leaders to work together on different projects to develop their skills and ultimately demonstrate ways of accessing and making appropriate use of technical assistance.
Four national level projects were identified and implemented, with three of them focusing on the issue of nurse prescribing:
Who has benefitted
Although 20 nurses attended the course, a further 154 health workers have undergone training through the link nurse programme carried out in six hospitals and health centres throughout Uganda. By the end of the 2-year project, 149 nurses were seeing patients with palliative care needs on their wards.
Over the course of the programme, the nurses’ leadership skills seemed to have improved significantly. For example, some nurses have shown increased confidence and have visited others hospitals to offer support; some have been recognized by their managers as leaders in the workplace. They also took a lead role in the development of palliative care in their hospitals, advocating for change, improving personal relationships, enabling and empowering others, strengthening referrals between hospitals and health centres, preparation for and implementation of the link nurse programme, conducting radio programmes on PC to sensitise the community etc.
The project has also positively impacted the work and motivation of the UK mentors/volunteers. Many of them, who had no previous experience of palliative care at international level, reported that, thanks to this experience in Uganda, they had been inspired to get involved in international PC. The majority of the nurses involved have now become inspired to share what they have learnt in Uganda in the UK, but also to look at ongoing opportunities to support international palliative care development.
What has been learned
The project shows that it is important to train nurses in leadership skills so that they can promote and develop palliative care further in Uganda. The evaluation of the link nurse programme also shows that the programme can be extended to a range of hospitals, as the model adopted can easily be adapted to suit the context, thus having national and regional impact.
The lack of policy and professional recognition for palliative care as a medical field continues to challenge many of the nurses, but through partnerships such as this one and the links they have made with associations like the Uganda Nurses and Midwives Council, the partners remain confident that a national palliative care policy will come to fruition. The policy has been accepted by Senate and is just waiting to be ratified. It was also recommended that a further cohort of leaders be trained.
“Doctors needed to be empowered [in terms of] knowledge and skills in palliative care so they can lead the way […] so I initiated some training for the doctors despite the challenges, and the district drug inspector also attended. […]I have also been able to link more with the Palliative Care Association of Uganda (PCAU) and we have had meetings with the village teams and there is more linkage to us which is good.”
Kelet Kalemba - Nurse, Bwera General Hospital in Kasese, Western Uganda