A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda
Abstract Background 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:...
| Main Authors: | , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2021-01-01
|
| Series: | Conflict and Health |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13031-020-00333-6 |
| _version_ | 1818426030809939968 |
|---|---|
| author | Sonya de Laat Olive Wahoush Rania Jaber Wejdan Khater Emmanuel Musoni Ibraheem Abu Siam Lisa Schwartz the Humanitarian Health Ethics Research Group |
| author_facet | Sonya de Laat Olive Wahoush Rania Jaber Wejdan Khater Emmanuel Musoni Ibraheem Abu Siam Lisa Schwartz the Humanitarian Health Ethics Research Group |
| author_sort | Sonya de Laat |
| collection | DOAJ |
| description | Abstract Background 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. Discussion 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. Conclusions 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. |
| first_indexed | 2024-12-14T14:23:21Z |
| format | Article |
| id | doaj.art-853de96a804e40399441f91304bdcd3b |
| institution | Directory Open Access Journal |
| issn | 1752-1505 |
| language | English |
| last_indexed | 2024-12-14T14:23:21Z |
| publishDate | 2021-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Conflict and Health |
| spelling | doaj.art-853de96a804e40399441f91304bdcd3b2022-12-21T22:58:01ZengBMCConflict and Health1752-15052021-01-011511810.1186/s13031-020-00333-6A case analysis of partnered research on palliative care for refugees in Jordan and RwandaSonya de Laat0Olive Wahoush1Rania Jaber2Wejdan Khater3Emmanuel Musoni4Ibraheem Abu Siam5Lisa Schwartz6the Humanitarian Health Ethics Research GroupGlobal Health, McMaster UniversitySchool of Nursing, McMaster UniversityDepartment of Philosophy, Institute on Ethics & Policy for Innovation, McMaster UniversitySchool of Nursing, Jordan University of Science and TechnologyUniversity Teaching HospitalUnited Nations High Commission for RefugeesDepartment of Health Research Methods, Evidence and Impact, McMaster UniversityAbstract Background 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. Discussion 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. Conclusions 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.https://doi.org/10.1186/s13031-020-00333-6Research collaborationEthical partnershipPalliative careHumanitarian crisisEthicsRefugees |
| spellingShingle | Sonya de Laat Olive Wahoush Rania Jaber Wejdan Khater Emmanuel Musoni Ibraheem Abu Siam Lisa Schwartz the Humanitarian Health Ethics Research Group A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda Conflict and Health Research collaboration Ethical partnership Palliative care Humanitarian crisis Ethics Refugees |
| title | A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda |
| title_full | A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda |
| title_fullStr | A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda |
| title_full_unstemmed | A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda |
| title_short | A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda |
| title_sort | case analysis of partnered research on palliative care for refugees in jordan and rwanda |
| topic | Research collaboration Ethical partnership Palliative care Humanitarian crisis Ethics Refugees |
| url | https://doi.org/10.1186/s13031-020-00333-6 |
| work_keys_str_mv | AT sonyadelaat acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT olivewahoush acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT raniajaber acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT wejdankhater acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT emmanuelmusoni acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT ibraheemabusiam acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT lisaschwartz acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT thehumanitarianhealthethicsresearchgroup acaseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT sonyadelaat caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT olivewahoush caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT raniajaber caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT wejdankhater caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT emmanuelmusoni caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT ibraheemabusiam caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT lisaschwartz caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda AT thehumanitarianhealthethicsresearchgroup caseanalysisofpartneredresearchonpalliativecareforrefugeesinjordanandrwanda |