Research in Humanitarian Palliative Care
by Olive Wahoush
Research in Humanitarian Palliative Care
Engaging in research in humanitarian palliative care is particularly challenging as sensitivities are compounded because of the priorities that are part of humanitarian crises responses and the varying sensitivities surrounding palliative care.
Key considerations include being certain that research in humanitarian settings is the only way to collect directly relevant evidence to inform future practice, policy and program planning. If possible partner with other researchers in the jurisdiction (Bartlett, et al below here) Understanding the relevant and required ethics review mechanisms and authorities is imperative. For example in a refugee situation the responsible authority for the safety and health of the refugee population of interest may vary. For example, the health and wellbeing of Syrian refugees in Jordan is managed by UNHCR; for Rohingya refugees in Cox Bazaar health and wellbeing is managed by IOM. In both cases government ministries also have oversight in granting access permits and expect ethics reviews to be completed and may require copies for their records.
Understanding cultural norms and sensitivities about the study population and palliative care is essential in developing the research, a ‘two eyed seeing’ approach (ref in list) or a cultural broker will help ensure that cultural norms and sensitivities related to the humanitarian crisis, potential participants and the affected population are considered in research design and methods. Clarify limitations in how and when people may be approached, security clearances that may be required. Security clearance can take weeks or months, authorities may insist of added groups of participants so that no single group is perceived as favoured. Remuneration or payments to participants may or may not be permitted. Share study documents for feedback to build trust and to help ensure that the study idea is feasible with appropriately detailed planning. Clarify intellectual property rights, publications and dissemination plans with the research team and hosts. Ask if there are reports or presentations that would be helpful for their organization.
Discuss training for research team members, security clearances and recruitment strategies with the host organization (such as UNHCR or IOM). Select and train research team members, elicit feedback on training, complete a trial of data collection (1-3 surveys or a single interview). Review techniques and revise if needed. Secure the appropriate permits for the research team to interview study participants, plan to debrief after the first interview. Ensure supports are available to the study team as the research progresses, at least a weekly check-in by phone or online is helpful in maintaining consistency and addressing concerns. Including debriefing meetings as needed is also helpful as interviewing participants who are displaced due to humanitarian crises and needing palliative care is stressful for interviewers and transcriptionists. At best interviewers may be experienced in palliative care or humanitarian crises rarely both.
When data collection and cleaning is complete, acknowledge with all agencies involved that this phase is complete. Confirm follow up contact regarding analysis to confirm understanding of data is valid, share reports and other dissemination activities including hosts as participants and co-authors or acknowledging their contribution to the work.
de Laat, S., Wahoush, O., Jaber, R., Khater, W., Musoni, E., Abu Siam, I., Schwartz, L & the Humanitarian Health Ethics Research Group. A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda. Confl Health 15, 2 (2021). https://doi.org/10.1186/s13031-020-00333-6
Bartlett, C., Marshall, M., Marshall, A. (2012). Two-Eyed Seeing and other lessons learned within a co-learning journey of bringing together Indigenous and mainstream knowledges and ways of knowing. Journal of Environmental Studies and Sciences, 2, 331–340. doi:10.1007/s13412-012-0086-8