The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage

Background: Palliative care (PC), a holistic approach to care for persons living with serious illness or injury, is a crucial component of Universal Health Coverage (UHC) and Sustainable Development Goal 3. While Uganda has made commendable progress in improving PC access, the legal aspects of PC pr...

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Main Authors: Sofia Weiss Goitiandia, Eve Namisango, Emmanuel B. K. Luyirika, Faith N. Mwangi-Powell, Lynn Atuyambe, Elizeus Rutebemberwa, Paul Muhimbura, Henry Ddungu, Richard A. Powell, Fatia Kiyange, William E. Rosa
Format: Article
Language:English
Published: SAGE Publishing 2025-06-01
Series:Palliative Care and Social Practice
Online Access:https://doi.org/10.1177/26323524251347652
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author Sofia Weiss Goitiandia
Eve Namisango
Emmanuel B. K. Luyirika
Faith N. Mwangi-Powell
Lynn Atuyambe
Elizeus Rutebemberwa
Paul Muhimbura
Henry Ddungu
Richard A. Powell
Fatia Kiyange
William E. Rosa
author_facet Sofia Weiss Goitiandia
Eve Namisango
Emmanuel B. K. Luyirika
Faith N. Mwangi-Powell
Lynn Atuyambe
Elizeus Rutebemberwa
Paul Muhimbura
Henry Ddungu
Richard A. Powell
Fatia Kiyange
William E. Rosa
author_sort Sofia Weiss Goitiandia
collection DOAJ
description Background: Palliative care (PC), a holistic approach to care for persons living with serious illness or injury, is a crucial component of Universal Health Coverage (UHC) and Sustainable Development Goal 3. While Uganda has made commendable progress in improving PC access, the legal aspects of PC provision remain underexplored. Objectives: Considering knowledge gaps regarding the legal aspects of PC in Uganda, this study sought to assess the legal needs and challenges faced by persons receiving PC in the country. Design: Cross-sectional design utilizing both quantitative and qualitative methods. Methods: The quantitative arm surveyed 384 individuals receiving PC across three study sites, comprising public and not-for-profit private healthcare institutions. Quantitative data were analyzed descriptively. The qualitative arm involved 25 key informant interviews conducted with healthcare providers, legal and human rights experts, and medicines supply chain professionals, along with four focus group discussions involving 40 individuals receiving PC at two study sites. Qualitative analysis was used to analyze the qualitative data. Results: Both quantitative and qualitative findings revealed significant legal challenges and practical obstacles faced by persons receiving PC in Uganda. Participants reported a lack of access to high-quality PC services, including legal assistance. Legal challenges included limited awareness of patients’ legal rights, the need for increased legal support in areas such as succession planning and will-making, and legal barriers associated with ensuring an adequate supply of opioids for pain management. Conclusion: Based on findings of unmet legal needs among individuals receiving PC in Uganda, this study provides recommendations to address these needs, strategically and pragmatically maximizing patients’ quality of life and well-being and advancing PC provision as part of UHC. Trial registration: Not applicable.
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spelling doaj-art-fa53d86173d8471ca5178ec8d849b2fa2025-08-20T03:29:52ZengSAGE PublishingPalliative Care and Social Practice2632-35242025-06-011910.1177/26323524251347652The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverageSofia Weiss Goitiandia0Eve Namisango1Emmanuel B. K. Luyirika2Faith N. Mwangi-Powell3Lynn Atuyambe4Elizeus Rutebemberwa5Paul Muhimbura6Henry Ddungu7Richard A. Powell8Fatia Kiyange9William E. Rosa10Division of Hospital Medicine, School of Medicine, University of California, San Francisco, CA, USAAfrican Palliative Care Association, Kampala, UgandaAfrican Palliative Care Association, Kampala, UgandaAfrican Palliative Care Association, Kampala, UgandaCollege of Health Sciences, Makerere University School of Public Health, Kampala, UgandaCollege of Health Sciences, Makerere University School of Public Health, Kampala, UgandaCollege of Health Sciences, Makerere University School of Public Health, Kampala, UgandaUganda Cancer Institute, Kampala, UgandaDepartment of Primary Care and Public Health, Faculty of Medicine, School of Public Health, Imperial College London, UKCenter for Health, Human Rights and Development, Kampala, UgandaDepartment of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USABackground: Palliative care (PC), a holistic approach to care for persons living with serious illness or injury, is a crucial component of Universal Health Coverage (UHC) and Sustainable Development Goal 3. While Uganda has made commendable progress in improving PC access, the legal aspects of PC provision remain underexplored. Objectives: Considering knowledge gaps regarding the legal aspects of PC in Uganda, this study sought to assess the legal needs and challenges faced by persons receiving PC in the country. Design: Cross-sectional design utilizing both quantitative and qualitative methods. Methods: The quantitative arm surveyed 384 individuals receiving PC across three study sites, comprising public and not-for-profit private healthcare institutions. Quantitative data were analyzed descriptively. The qualitative arm involved 25 key informant interviews conducted with healthcare providers, legal and human rights experts, and medicines supply chain professionals, along with four focus group discussions involving 40 individuals receiving PC at two study sites. Qualitative analysis was used to analyze the qualitative data. Results: Both quantitative and qualitative findings revealed significant legal challenges and practical obstacles faced by persons receiving PC in Uganda. Participants reported a lack of access to high-quality PC services, including legal assistance. Legal challenges included limited awareness of patients’ legal rights, the need for increased legal support in areas such as succession planning and will-making, and legal barriers associated with ensuring an adequate supply of opioids for pain management. Conclusion: Based on findings of unmet legal needs among individuals receiving PC in Uganda, this study provides recommendations to address these needs, strategically and pragmatically maximizing patients’ quality of life and well-being and advancing PC provision as part of UHC. Trial registration: Not applicable.https://doi.org/10.1177/26323524251347652
spellingShingle Sofia Weiss Goitiandia
Eve Namisango
Emmanuel B. K. Luyirika
Faith N. Mwangi-Powell
Lynn Atuyambe
Elizeus Rutebemberwa
Paul Muhimbura
Henry Ddungu
Richard A. Powell
Fatia Kiyange
William E. Rosa
The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage
Palliative Care and Social Practice
title The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage
title_full The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage
title_fullStr The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage
title_full_unstemmed The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage
title_short The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage
title_sort legal needs of people receiving palliative care in uganda a multi method assessment to advance universal health coverage
url https://doi.org/10.1177/26323524251347652
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