A palliative care link nurse programme in Mulago Hospital, Uganda: an evaluation using mixed methods

TLDR: The link-nurse programme is a practical model for integrating PC into generalist services and recommended for ongoing development and expansion as an effective health systems strengthening approach in similar healthcare contexts.

Abstract: Integrating palliative care (PC) and empowering the health care workforce is essential to achieve universal access to PC services. In 2010, 46 % of patients in Mulago Hospital, Uganda had a life limiting illness, of whom 96 % had PC needs. The university/hospital specialist PC unit (Makerere/Mulago Palliative Care Unit –MPCU) implemented a link-nurse model to empower hospital nurses to provide generalist PC. Over two years, 27 link nurses were trained and mentored and 11 clinical protocols developed. The aim of the study was to evaluate the impact of the palliative care link nurse programme at Mulago Hospital An evaluation approach utilising mixed methods was used integrating qualitative and quantitative data including: pre and post course assessment confidence ratings; course evaluation forms; audit of clinical guidelines availability; review of link-nurse activity sheets/action plans; review of MPCU patient documentation; Most Significant Change (MSC); individual and focus group interviews. A significant difference was seen in nurses’ confidence after the training (p < 0.001). From July 2012 to December 2013, link nurses identified 2447 patients needing PC, of whom they cared for 2113 (86 %) and referred 334 (14 %) to MPCU. Clinical guidelines/protocols were utilised in 50 % of wards. Main themes identified include: change in attitude; developing new skills and knowledge; change in relationships; improved outcomes of care, along with the challenges that they experienced in integrating PC. Since the start of the programme there has been an increase in PC patients seen at the hospital (611 in 2011 to 1788 in 2013). The link-nurse programme is a practical model for integrating PC into generalist services. Recommendations have been made for ongoing development and expansion of the programme as an effective health systems strengthening approach in similar healthcare contexts, as well as the improvement in medical and nursing education.