乌干达接受姑息治疗者的法律需求：推进全民健康覆盖的多方法评估
The legal needs of people receiving palliative care in Uganda: A multi-method assessment to advance universal health coverage.
作者信息
Weiss Goitiandia Sofia, Namisango Eve, Luyirika Emmanuel B K, Mwangi-Powell Faith N, Atuyambe Lynn, Rutebemberwa Elizeus, Muhimbura Paul, Ddungu Henry, Powell Richard A, Kiyange Fatia, Rosa William E
机构信息
Division of Hospital Medicine, School of Medicine, University of California, San Francisco, CA, USA.
African Palliative Care Association, Kampala, Uganda.
出版信息
Palliat Care Soc Pract. 2025 Jun 26;19:26323524251347652. doi: 10.1177/26323524251347652. eCollection 2025.
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.
背景
姑息治疗（PC）是一种针对患有严重疾病或受伤者的整体护理方法，是全民健康覆盖（UHC）和可持续发展目标3的关键组成部分。虽然乌干达在改善姑息治疗的可及性方面取得了值得称赞的进展，但姑息治疗提供的法律方面仍未得到充分探索。
目的
鉴于乌干达姑息治疗法律方面存在知识空白，本研究旨在评估该国接受姑息治疗的人员面临的法律需求和挑战。
设计
采用定量和定性方法的横断面设计。
方法
定量部分对来自三个研究地点（包括公立和非营利性私立医疗机构）的384名接受姑息治疗的个体进行了调查。定量数据进行了描述性分析。定性部分包括对医疗服务提供者、法律和人权专家以及药品供应链专业人员进行的25次关键 informant访谈，以及在两个研究地点对40名接受姑息治疗的个体进行的四次焦点小组讨论。定性分析用于分析定性数据。
结果
定量和定性研究结果均显示，乌干达接受姑息治疗的人员面临重大法律挑战和实际障碍。参与者报告称难以获得包括法律援助在内的高质量姑息治疗服务。法律挑战包括患者对其合法权利的认识有限、在诸如继承规划和遗嘱制定等领域需要更多法律支持，以及与确保有足够的阿片类药物用于疼痛管理相关的法律障碍。
结论
基于乌干达接受姑息治疗的个体未得到满足的法律需求的研究结果，本研究提出了满足这些需求的建议，从战略和务实角度最大限度地提高患者的生活质量和幸福感，并推进姑息治疗作为全民健康覆盖的一部分。
试验注册
不适用。
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