de Laat Sonya, Wahoush Olive, Jaber Rania, Khater Wejdan, Musoni Emmanuel, Abu Siam Ibraheem, Schwartz Lisa
Global Health, McMaster University, MDCL 3500, 1280 Main Street West, Hamilton, ON, L8S 4K1, Canada.
School of Nursing, McMaster University, Hamilton, ON, Canada.
Confl Health. 2021 Jan 6;15(1):2. doi: 10.1186/s13031-020-00333-6.
This case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study's main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational research partnerships, which is the focus of this case analysis.
There exist ongoing challenges for international collaborative research in humanitarian conflict-induced settings. Research partnerships were crucial for connecting with key stakeholders associated with the full study (e.g., refugees with life limiting illness, local healthcare providers, aid organization representatives). While important relationships were established, obstacles limited our abilities to fully attain the type of mutual partnership we aimed for. Unique challenges faced during the research included: (a) building, nurturing and sustaining respectful and equitable research partnerships between collaborators in contexts of cultural difference and global inequality; (b) appropriate ethics review and challenges of responding to local decision-maker's research needs; and (c) equity and fairness towards vulnerable populations. Research strategies were adapted and applied to respond to these challenges with a specific focus on (d) research rewards and restitution.
This case analysis sheds light on the importance of understanding cultural norms in all research roles, building relationships with decision makers, and developing teams that include researchers from within humanitarian crisis settings to ensure that mutually beneficial research outcomes are ethical as well as culturally and contextually relevant.
本案例分析描述了在开展一项研究的过程中遇到的道德合作困境与挑战，该研究探讨了人道主义危机背景下姑息治疗的道德和实际层面。本案例分析聚焦于两个背景：约旦，一个因冲突导致的急性难民情况；卢旺达，一个因长期冲突导致的难民背景。该研究的主要目标是更好地理解人道主义组织和医疗服务提供者在人道主义背景下以道德且符合具体情况的方式提供姑息治疗的最佳途径。该研究的一个意外成果是汲取了关于跨国研究合作道德层面的经验教训，这也是本案例分析的重点。
在因冲突导致的人道主义背景下进行国际合作研究存在持续的挑战。研究合作对于与整个研究相关的关键利益攸关方建立联系至关重要（例如，患有危及生命疾病的难民、当地医疗服务提供者、援助组织代表）。虽然建立了重要关系，但障碍限制了我们充分实现我们所期望的那种相互合作关系的能力。研究过程中面临的独特挑战包括：（a）在文化差异和全球不平等的背景下，在合作者之间建立、培养和维持尊重和平等的研究合作关系；（b）适当的伦理审查以及应对当地决策者研究需求的挑战；（c）对弱势群体的公平和平等。研究策略经过调整和应用以应对这些挑战，特别关注（d）研究回报和补偿。
本案例分析揭示了理解所有研究角色中的文化规范、与决策者建立关系以及组建包括来自人道主义危机背景的研究人员的团队的重要性，以确保互利的研究成果既符合道德规范，又在文化和具体情况方面具有相关性。
