title: A palliative care link nurse programme in Mulago Hospital, Uganda: an evaluation using mixed methods.
abstract: BACKGROUND
  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
  
  
  METHODS
  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.
  
  
  RESULTS
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Makerere University, PO Box 7757, Kampala, Uganda. julia.downing792@btinternet.com.
authors.forename: Julia
authors.initials: J
authors.lastname: Downing
authors.affiliation: Makerere Palliative Care Unit, PO Box 7757, Kampala, Uganda.
authors.forename: Mwazi
authors.initials: M
authors.lastname: Batuli
authors.affiliation: Makerere Palliative Care Unit, PO Box 7757, Kampala, Uganda.
authors.forename: Grace
authors.initials: G
authors.lastname: Kivumbi
authors.affiliation: Mulago Hospital, PO Box 7757, Kampala, Uganda.
authors.forename: Josephine
authors.initials: J
authors.lastname: Kabahweza
authors.affiliation: Global Health Academy, Centre for Population Health Sciences, University of Edinburgh. Medical School, Teviot Place, Edinburgh, EH8 9AG, UK.
authors.forename: Liz
authors.initials: L
authors.lastname: Grant
authors.affiliation: St. Columba's Hospice Chair of Primary Palliative Care, Primary Palliative Care Research Group, University of Edinburgh, Medical School, Teviot Place, Edinburgh, EH8 9AG, UK.
authors.forename: Scott A
authors.initials: SA
authors.lastname: Murray
authors.affiliation: Makerere University, PO Box 7757, Kampala, Uganda.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Namukwaya
authors.affiliation: Makerere University, PO Box 7757, Kampala, Uganda.
authors.forename: Mhoira
authors.initials: M
authors.lastname: Leng
mesh_terms: D000328:Adult; D019058:Community Networks / Q000639:trends*; D004496:Education, Continuing / Q000379:methods; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D009726:Nurses / Q000639:trends*; D010166:Palliative Care / Q000379:methods*; D015397:Program Evaluation; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D014454:Uganda
keywords: Africa; Education; Evaluation; Generalist palliative care; Hospital; Mixed methods; Nurses; Palliative care; Service delivery; Uganda