The Uganda Children’s palliative care nurse leadership fellowship programme came to its conclusion this August. The programme has been run by a collaboration of the Palliative care Education and Research Consortium (PcERC), the International Children’s Palliative Care Network (ICPCN), the University of Edinburgh (Global Health Academy and School of Health in Social Science). It was funded by the Burdett Trust for Nursing as part of their commitment to strengthen nursing across the globe building technical, clinical and leadership skills so that health services and systems are improved.
The aim of the programme was to empower nurses to lead services which will improve access to and the provision of palliative care generally and to build up children’s palliative care in Uganda. The programme commenced in October 2022 and was completed in August 2024. There were two main components of the project: 1) to increase nurse prescribers by supporting four nurses from different districts to complete the Advanced Diploma in Palliative Care Nursing run by the Mulago School of Nursing & Midwifery, and 2) to run a children’s palliative care nurse leadership programme for sixteen nurses from a range of districts including from Northern Uganda and Mbarara. Following a review of where referrals came from to the Makerere/Mulago Palliative Care Unit, participants were selected from nine districts: Adjumani, Kiboga, Koboko, Kampala, Luweero, Masaka, Mbarara, Moyo, and Yumbe.
The leadership programme commenced with virtual training on children’s palliative care – conducted over 3 days in October 2022 and then a further 2 days in December 2023. At the time there were still restrictions due to Covid and so the virtual training was the only option. This was followed by a period of mentorship and also clinical placements which were held throughout 2023 and the beginning of 2024. In September 2023 a 2-day face-to-face leadership training was held and participants were also supported to attend the National Palliative/ Cancer care conference. Participants also completed action plans as to how they were going to develop children’s palliative care and strengthen their leadership skills. A virtual training was then held in June 2024 to see how the participants were progressing with their action plans, and the way forward to develop and strengthen children’s palliative care at their workplaces. The final leadership day was held in August 2024 and was attended by a team from the University of Edinburgh alongside PcERC and ICPCN. Finally a stakeholders workshop was held with key stakeholders to discuss the programme and look at the next steps for developing children’s palliative care in Uganda.
The final leadership day commenced with Florence Nalutaaya, the co-ordinator for the programme giving an overview of the project, what has been done and achieved, sharing her experiences of providing mentorship in the participants work places, as well as the clinical placements. Mentorship and placements were held by Vicky Opia from Peace Hospice in Adjumani for participants from the Northern parts of Uganda. Following this the participants were introduced to the concept of ‘Elevator Pitches’ and they all developed a 1 minute ‘pitch’ saying who they were, what they had gained from the course, what they had done through their action plans, and key asks for their managers re the next steps of the development of children’s palliative care in their work place. Each of the participants gave their ‘pitch’ and they were timed and recorded and feedback given. The skill of being able to advocate for children’s palliative care is such an important skills. Prof Liz Grant from the University of Edinburgh then discussed leading and building collaborations and the importance of this for children’s palliative care development. Following an exercise to review the achievements, lessons learnt and challenges, a short graduation ceremony was held and Prof Liz Grant presented participants with their certificates.
The following day an update meeting on the programme was held with key stakeholders, including the participants managers, and national stakeholders such as Sr Chandia Agnes Baku, the Commissioner in Charge of Nursing at the Ministry of Health, Dr Moses Muwangam the Ass, Commissioner for Palliative care and Hospice Services at the Ministry of Health, Mark Mwesiga, Director of the Palliative Care Association of Uganda (PCAU). Representatives of the Uganda Nurses and Midwives Council, the Uganda Nurses and Midwives board, several universities, hospitals and palliative care organisations were also invited to attend. The morning started with a presentation on the Global situation for children’s palliative care and then the situation in Uganda, prior to a presentation about the programme and the achievements and impact of the programme. There followed a discussion around future directions for the development of children’s palliative care in Uganda, focusing on the different elements of the WHO Conceptual model for palliative care development. There was synergy between different groups, and the next steps are being reviewed and discussed. The morning was closed by the Commissioner in Charge of Nursing who stressed the importance of training nurses in both palliative care and leadership skills and how this fits in well with the priorities identified for nursing by the Ministry of Health.
When asked about the programme Prof Liz Grant, from the University of Edinburgh Global Health Academy said:
“All nurses can be changemakers for health. The nurses who underwent this training showed exceptional abilities to use their learning to improve care in their different workplaces.”
ICPCN were delighted to be collaborating on this programme and we hope to be able to continue to work to develop nurses leadership skills along with children’s palliative care skills.