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

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          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).

          Conclusion

          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.

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          Most cited references30

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          Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory

          M Corbin J, JM - Corbin, AL Strauss … (2015)
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            Palliative care in sub-Saharan Africa.

            Richard Harding, Irene J Higginson (2015)
            Control of pain and symptoms and terminal care are necessary for quality HIV and cancer care in sub-Saharan Africa. However, what constitutes feasible, accessible, and effective palliative care, and how to develop such services, remains to be resolved. Africa-specific palliative care includes components that carry resource implications. Home and community-based care has been largely successful, but community capacity and the resources and clinical supervision necessary to sustain quality care are lacking. Coverage and referrals must be primary concerns. Simple lay and professional protocols have been developed, but opioid availability remains a major constraint. Areas of good practice, and areas where further success may be achieved include: attention to community needs and capacity; explicit frameworks for service development and palliative-care integration throughout the disease course (including antiretroviral provision); further education and protocols; strengthening and dissemination of diverse referral and care systems; increasing advocacy; and funding and technical skills to build audit and quality assessment.
            Article 0 comments Cited 62 times – based on 0 reviews     Review now
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              Do hospital-based palliative teams improve care for patients or families at the end of life?

              Irene J Higginson, Ilora Finlay, Danielle M Goodwin … (2002)
              To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the sample's standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice.
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                Author and article information

                Contributors
                Julia Downing: +256 712 266251 , julia.downing792@btinternet.com
                Mwazi Batuli: mbatuli@yahoo.com
                Grace Kivumbi: gkivumbi@gmail.com
                Josephine Kabahweza: jkabahweza@yahoo.com
                Liz Grant: liz.grant@ed.ac.uk
                Scott A. Murray: Scott.Murray@ed.ac.uk
                Elizabeth Namukwaya: liznam2002@yahoo.co.uk
                Mhoira Leng: mhoira@gmail.com
                Journal
                Journal ID (nlm-ta): BMC Palliat Care
                Journal ID (iso-abbrev): BMC Palliat Care
                Title: BMC Palliative Care
                Publisher: BioMed Central (London )
                ISSN (Electronic): 1472-684X
                Publication date (Electronic): 8 April 2016
                Publication date PMC-release: 8 April 2016
                Publication date Collection: 2016
                Volume: 15
                Electronic Location Identifier: 40
                Affiliations
                [ ]Makerere University, PO Box 7757, Kampala, Uganda
                [ ]Makerere Palliative Care Unit, PO Box 7757, Kampala, Uganda
                [ ]Mulago Hospital, PO Box 7757, Kampala, Uganda
                [ ]Global Health Academy, Centre for Population Health Sciences, University of Edinburgh. Medical School, Teviot Place, Edinburgh, EH8 9AG UK
                [ ]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
                Article
                Publisher ID: 115
                DOI: 10.1186/s12904-016-0115-6
                PMC ID: 4825074
                PubMed ID: 27059019
                SO-VID: 0f32f4c3-492a-4074-af83-190e9d670230
                Copyright © © Downing et al. 2016
                License:

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                Date received : 5 August 2015
                Date accepted : 4 April 2016
                Funding
                Funded by: The Diana Princess of Wales Memorial Fund
                Award ID: URN 6596/3201
                Categories
                Subject: Research Article
                Custom metadata
                issue-copyright-statement © The Author(s) 2016

                ScienceOpen disciplines: Anesthesiology & Pain management
                Keywords: palliative care,hospital,uganda,africa,service delivery,education,evaluation,nurses,generalist palliative care,mixed methods
                Data availability:
                ScienceOpen disciplines: Anesthesiology & Pain management
                Keywords: palliative care, hospital, uganda, africa, service delivery, education, evaluation, nurses, generalist palliative care, mixed methods

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