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Current State of Palliative Care in Uganda

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Palliative Care for Chronic Cancer Patients in the Community

Abstract

The need for palliative care in Uganda has exponentially increased due to the ageing population, the increased number of non-communicable diseases and the high prevalence of HIV/acquired immune deficiency syndrome (AIDS). The World Health Organisation (WHO) estimates that 1% of the population needs palliative care; therefore, as the current population of Uganda is 40,308,000, an estimated 403,080 people need palliative care. Uganda has made significant progress in palliative care services and research since 1993, when palliative care was introduced. Uganda was the highest-ranking African country and 35th ranking country worldwide in the Quality of Death Index of 2015 out of 80 countries assessed for quality and availability of palliative care services for adult populations in the world. Uganda had the largest number of palliative care services among the countries surveyed in Africa for the recent African Palliative Care Association (APCA) Atlas of 2017. In 2019, 90% of the 112 districts in Uganda had palliative care services. Most palliative care services were developed in the pre-antiretroviral treatment era as a response to the HIV/AIDS epidemic and its complications, including cancer. Most palliative care services offer care mainly for HIV/AIDS and cancer patients, with a few now taking on other illnesses that cause serious health-related suffering. The majority of palliative care services in Uganda are health facility-based. Home-based and community-based services are few and are mainly provided by non-government organisations. The palliative care service matrix for palliative care services in Uganda includes pain and symptom control, social and psychological support, patient and family healthcare education, cancer screening, day care services, food and school education support, provision of antiretroviral therapy, HIV testing, transport assistance and bereavement support. Community and hospital volunteers have played a big role in palliative care in Uganda, which bridge healthcare professionals with the community.

This chapter discusses the current state of palliative care services in Uganda. Focus will be on services that offer home-based and community-based palliative care, as most people live in rural areas with little access to health facilities; this is where most people should receive most of their care as the majority of patients prefer to die at home. The five-pillar approach to the integration of palliative care into health systems, as proposed by the World Health Organisation, has been pivotal in the palliative care development in Uganda. Therefore, this chapter will highlight the development and current state of palliative care using these pillars. The challenges faced by palliative care in Uganda will also be discussed.

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References

  1. Connor SR, Bermedo MCS. Global atlas of palliative care at the end-of- life. London: Worldwide Palliative Care Alliance; 2014.

    Google Scholar 

  2. Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Kwete XJ, Connor SR. Alleviating the access abyss in palliative care and pain relief - an imperative of universal health coverage: the Lancet Commission report. Lancet. 2018;391(10128):1391–454.

    Article  PubMed  Google Scholar 

  3. World Health Organization. Global Health Observatory (GHO): NCD mortality and morbidity. [Cited on 12th February 2020]. Available from http://www.who.int/gho/ncd/mortality_morbidity/en/.

  4. Palliative care -World Health Organisation. [Cited on 12th February 2020] available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care.

  5. Uganda bureau of statistics - UBOs 2019. [Cited on 30th September 2019] available from: https://www.ubos.org/.

  6. Merriman A, Mwebesa E, Zirimenya L. Improving access to palliative care for patients with cancer in Africa: 25 years of Hospice Africa. e-cancer Med Sci. 2019;13:946.

    Google Scholar 

  7. Non- communicable diseases country profiles 2018 -Uganda. [cited on 10th February 2020] Available from: https://www.who.int/nmh/countries/uga_en.pdf.

  8. Uganda-Global cancer observatory. [cited on 2nd October 2019] available from: http://gco.iarc.fr/today/data/factsheets/populations/800-uganda-fact-sheets.pdf.

  9. Uganda Population HIV-based HIV Impact Assessment. Uganda fact sheet –WHO - Afro-World Health Organisation. [Cited on 8th October 2019] available from: https://www.afro.who.int/sites/default/files/2017-08/UPHIA%20Uganda%20factsheet.pdf.

  10. Uganda-UNAIDS [cited on 10th February 2020.] available from: https://www.unaids.org/en/regionscountries/countries/uganda.

  11. Mwaka AD, Garimoi CO, Were EM, Roland M, Wabinga H, Lyratzopoulos G. Social, demographic and healthcare factors associated with stage at diagnosis of cervical cancer: cross-sectional study in a tertiary hospital in Northern Uganda. BMJ Open. 2016;6:e007690.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Galukande M, Mirembe F, Wabinga H. Patient delay in accessing breast cancer care in a sub-Saharan African Country: Uganda. Br J Med Med Res. 2014;4(13):2599–610.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Ministry of Health Uganda report on NCD survey 2014. [Cited on 10th October 2019] available from.: https://health.go.ug/community-health-departments/non-communicable-diseases.

  14. Medicine prices in Uganda –World Health Organisation. [cited on 10th February 2020] available from: https://www.who.int/medicines/areas/technical_cooperation/MedicinePricesUganda.pdf.

  15. Lunyera J, Stanifer JW, Ingabire P, Etolu W, Bagasha P, Egger JR, et al. Prevalence and correlates of proteinuria in Kampala, Uganda: a cross-sectional pilot study. BMC Res Notes. 2016;9:97.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Naicker S, Ashuntantang G. End stage renal disease in sub-Saharan Africa. In: Chronic kidney disease in disadvantaged populations. Elsevier; 2017. p. 125–37.

    Google Scholar 

  17. Merriman A. Uganda: current status of palliative care. J Pain Symptom Manag. 2002;24(2):252–6.

    Article  Google Scholar 

  18. Stjernaward J, Foley KM, Ferris FD. The public health strategy for palliative care. J Pain Symptom Manag. 2007;33:486–93.

    Article  Google Scholar 

  19. Care, WHO Integrating Palliative. Symptom relief into primary health care: a WHO guide for planners, implementers and managers: World Health Organization; 2018.

    Google Scholar 

  20. Harding R, Selman L, Powell RA, Namisango E, Downing J, Merriman A, et al. Research into palliative care in sub-Saharan Africa. Lancet Oncol. 2013;14(4):e183–8.

    Article  PubMed  Google Scholar 

  21. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manag. 2013;45:1094–106.

    Article  Google Scholar 

  22. Alliance, Worldwide Palliative Care. Mapping levels of palliative care development: a global update. London: Worldwide Palliative Care Alliance; 2011.

    Google Scholar 

  23. Economics Intelligence Unit. The 2015 quality of death index. Ranking palliative care across the world. London: EIU; 2015. [Cited on 12th February 2020] Available from: https://eiuperspectives.economist.com/sites/default/files/2015%20EIU%20Quality%20of%20Death%20Index%20Oct%2029%20FINAL.pdf.

    Google Scholar 

  24. Rhee JY, Luyirika E, Namisango E, Powell RA, Garralda E, Pons JJ, et al. APCA atlas of palliative care in Africa. Houston, TX: IAHPC Press; 2017.

    Google Scholar 

  25. Kiwanuka, R. Palliative care for the deaf community in Uganda. ehospice 2015. [Cited on 13 February 2020] available from: https://ehospice.com/international_posts/palliative-care-for-the-deaf-community-in-uganda/.

  26. Compassionate cell-mates-improving access to palliative care and HIV services in Masaka prison in Uganda. e-hospice 2016. [Cited on 13th February 2020] Available from https://ehospice.com/africa_posts/compassionate-cell-mates-improving-access-to-palliative-care-and-hiv-services-in-masaka-prison-uganda/.

  27. Uganda Clinical guidelines 2016.Ministry of Health. [cited on 14th February 2020] Available from https://www.health.go.ug/content/uganda-clinical-guidelines-2016.

  28. Kikule E. A good death in Uganda: survey of needs for palliative care for terminally ill people in urban areas. BMJ. 2003;327(7408):192–4.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Hospice Africa Uganda. [Cited on 13th February 2020] Available from: http://uganda.hospiceafrica.or.ug/.

  30. Kawempe Home care. [Cited on 13th February 2020] Available from: https://kawempehomecare.org/who-we-are/.

  31. Email communication from Joy hospice team member received on 12th February 2020.

    Google Scholar 

  32. Rays of Hope Hospice. [Cited on 13th February 2020] Available from: https://www.raysofhopehospicejinja.org/about-us-vision-and-mission.

  33. Global directory for palliative care services and organisations. [Cited on 10th October 2019] Available from: https://hospicecare.com/global-directory-of-providers-organizations/listings/details/1886/.

  34. Hospice Tororo. [Cited on 13th February 2020]Available from: http://www.hospicetororo.com/about-us.

  35. Kitovu mobile. [Cited on 13 February 2020] Available from: http://www.kitovumobile.com/about-us.

  36. New life Hospice Arua. [Cited on 13th February 2020] Available from: https://pcauganda.org/fundraising-for-the-construction-of-the-first-hospice-in-west-nile/.

  37. Bringing Palliative care to Southern Sudan refugees. [Cited on 13th February 2020] Available from: https://eapcnet.wordpress.com/2019/10/07/winning-posters-from-berlin-bringing-palliative-care-education-to-south-sudanese-refugees-in-uganda/.

  38. Nakafeero. A rural hospital initiates a successful palliative care service-St. Francis Nagalama hospital, Uganda. E hospice 2015. [Cited on 13th February 2020]. Available from: https://ehospice.com/africa_posts/a-rural-hospital-initiates-a-successful-palliative-care-service-st-francis-naggalama-hospital-uganda/.

  39. Massavon W, Nsubuga M, Lundin R, Penazzato M, Nannyonga N, Namisi C, et al. Nsambya community Home-Based Care complements national HIV and TB management efforts and contributes to health systems strengthening in Uganda: an observational study. ISRN Public Health. 2014;2014:623690.

    Article  Google Scholar 

  40. Nsambya home care. [Cited on 13th February 2020] Available from: http://www.nsambyahospital.or.ug/department/home-care/.

  41. Jack BA, Kirton JA, Birakurataki J, Merriman A. The personal value of being a palliative care community volunteer worker in Uganda: a qualitative study. Palliat Med. 2012;26(5):753–9.

    Article  PubMed  Google Scholar 

  42. Grant L, Brown J, Leng M, Bettega N, Murray SA. Palliative care making a difference in rural Uganda, Kenya and Malawi: three rapid evaluation field studies. BMC Palliat Care. 2011;10:8.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Volunteering –Hospice Africa Uganda. [Cited on 13th February 2020] available from: http://uganda.hospiceafrica.or.ug/index.php/careers/volunteering.

  44. Jack BA, Kirton J, Birakurataki J, Merriman A. A bridge to the hospice: the impact of a community volunteer programme in Uganda. Palliat Med. 2011;25:706–15.

    Article  PubMed  Google Scholar 

  45. Palliative Care Association of Uganda. [cited on 13th february 2020]. Available from https://pcauganda.org/.

  46. About APCA –African Palliative Care Association. [Cited on 13th February 2020] Available from: https://www.africanpalliativecare.org/about/about-apca/.

  47. Downing J, Batuli M, Kivumbi G, Kabahweza J, Grant L, Murray SA, et al. A palliative care link nurse programme in Mulago Hospital, Uganda: an evaluation using mixed methods. BMC Palliat Care. 2016;15(1):40.

    Article  PubMed  PubMed Central  Google Scholar 

  48. Leng M. Building momentum for palliative care, transforming lives, changing systems, bringing hope. 10th anniversary conference for Makerere Mulago Palliative care Unit . Makerere College of Health Sciences 9th–10th August 2018. [Cited on 27th may 2020 Available from: https://cairdeas.org.uk/resources/conference-lecture-posters-and-presentations.

  49. Downing J, Leng M, Grant L. Implementing a palliative care nurse leadership fellowship program in Uganda. Oncol Nurs Forum. 2016;43(3):395–8.

    Article  PubMed  Google Scholar 

  50. Downing J, Kivumbi G, Nabirye E, Ojera A, Namwaga R, Katusabe R, et al. An evaluation of palliative care nurse prescribing: a mixed methods study in Uganda. BMJ Support Palliat Care. 2018;8:A6.

    Google Scholar 

  51. Leng M, Okongo F, Knights D, Downing J, Batuli M. Who needs palliative care; assessment of needs in two regional referral hospitals in northern Uganda. Proceeding of Makerere University Annual Scientific Conference September 2014. At: Imperial Royal Hotel Kampala-Uganda [cited on 13th February 2020] Available from: https://www.researchgate.net/publication/280830291_WHO_NEEDS_PALLIATIVE_CARE_ASSESSMENT_OF_NEEDS_IN_TWO_REGIONAL_REFERRAL_HOSPITALS_IN_NORTHERN_UGANDA.

  52. Jacinto A, Masembe V, Tumwesigye NM, Harding R. The prevalence of life-limiting illness at a Ugandan National Referral Hospital: a 1-day census of all admitted patients. BMJ Support Palliat Care. 2015;5:196–9.

    Article  PubMed  Google Scholar 

  53. Lewington J, Namukwaya E, Limoges J, Leng M, Harding R. Provision of palliative care for life-limiting disease in a low income country national hospital setting: how much is needed? BMJ Support Palliat Care. 2012;2:140–4.

    Article  PubMed  Google Scholar 

  54. Nabudere H, Obuku E, Lamorde M. Advancing palliative care in the Uganda health system: an evidence-based policy brief. Int J Technol Assess Health Care. 2014;30(6):621–5.

    Article  PubMed  Google Scholar 

  55. Access to Palliative care 216 Uganda fact UPR sheet [cited on 13th February 2020] available from.: https://pcauganda.org/wp-content/uploads/2017/02/PC-FACTSHEET_Final-1.pdf.

  56. Powell RA, Mwangi-Powell, Kiyange F, Radbruch L, Harding R. Palliative care development in Africa: how can we provide enough quality care? BMJ Support Palliat Care. 2011;1(2):113–4.

    Article  CAS  PubMed  Google Scholar 

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Namukwaya, E., Mwaka, A.D., Namisango, E., Mwesiga, M.D., Downing, J. (2021). Current State of Palliative Care in Uganda. In: Silbermann, M. (eds) Palliative Care for Chronic Cancer Patients in the Community. Springer, Cham. https://doi.org/10.1007/978-3-030-54526-0_24

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  • DOI: https://doi.org/10.1007/978-3-030-54526-0_24

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