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: 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. Ausführliche Beschreibung

Gespeichert in:

Autor*in:	Sonya de Laat [verfasserIn] Olive Wahoush [verfasserIn] Rania Jaber [verfasserIn] Wejdan Khater [verfasserIn] Emmanuel Musoni [verfasserIn] Ibraheem Abu Siam [verfasserIn] Lisa Schwartz [verfasserIn] the Humanitarian Health Ethics Research Group [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2021

Schlagwörter:	Research collaboration Ethical partnership Palliative care Humanitarian crisis Ethics Refugees

Übergeordnetes Werk:	In: Conflict and Health - BMC, 2007, 15(2021), 1, Seite 8
Übergeordnetes Werk:	volume:15 ; year:2021 ; number:1 ; pages:8

Links:	Link aufrufen Link aufrufen Link aufrufen Journal toc

DOI / URN:	10.1186/s13031-020-00333-6

Katalog-ID:	DOAJ05244001X

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allfieldsGer	10.1186/s13031-020-00333-6 doi (DE-627)DOAJ05244001X (DE-599)DOAJ853de96a804e40399441f91304bdcd3b DE-627 ger DE-627 rakwb eng RC952-1245 RC86-88.9 Sonya de Laat verfasserin aut A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda 2021 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Research collaboration Ethical partnership Palliative care Humanitarian crisis Ethics Refugees Special situations and conditions Medical emergencies. Critical care. Intensive care. First aid Olive Wahoush verfasserin aut Rania Jaber verfasserin aut Wejdan Khater verfasserin aut Emmanuel Musoni verfasserin aut Ibraheem Abu Siam verfasserin aut Lisa Schwartz verfasserin aut the Humanitarian Health Ethics Research Group verfasserin aut In Conflict and Health BMC, 2007 15(2021), 1, Seite 8 (DE-627)52587514X (DE-600)2273783-2 17521505 nnns volume:15 year:2021 number:1 pages:8 https://doi.org/10.1186/s13031-020-00333-6 kostenfrei https://doaj.org/article/853de96a804e40399441f91304bdcd3b kostenfrei https://doi.org/10.1186/s13031-020-00333-6 kostenfrei https://doaj.org/toc/1752-1505 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4367 GBV_ILN_4700 AR 15 2021 1 8
allfieldsSound	10.1186/s13031-020-00333-6 doi (DE-627)DOAJ05244001X (DE-599)DOAJ853de96a804e40399441f91304bdcd3b DE-627 ger DE-627 rakwb eng RC952-1245 RC86-88.9 Sonya de Laat verfasserin aut A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda 2021 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Research collaboration Ethical partnership Palliative care Humanitarian crisis Ethics Refugees Special situations and conditions Medical emergencies. Critical care. Intensive care. First aid Olive Wahoush verfasserin aut Rania Jaber verfasserin aut Wejdan Khater verfasserin aut Emmanuel Musoni verfasserin aut Ibraheem Abu Siam verfasserin aut Lisa Schwartz verfasserin aut the Humanitarian Health Ethics Research Group verfasserin aut In Conflict and Health BMC, 2007 15(2021), 1, Seite 8 (DE-627)52587514X (DE-600)2273783-2 17521505 nnns volume:15 year:2021 number:1 pages:8 https://doi.org/10.1186/s13031-020-00333-6 kostenfrei https://doaj.org/article/853de96a804e40399441f91304bdcd3b kostenfrei https://doi.org/10.1186/s13031-020-00333-6 kostenfrei https://doaj.org/toc/1752-1505 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_602 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2009 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2055 GBV_ILN_2111 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4367 GBV_ILN_4700 AR 15 2021 1 8
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authorswithroles_txt_mv	Sonya de Laat @@aut@@ Olive Wahoush @@aut@@ Rania Jaber @@aut@@ Wejdan Khater @@aut@@ Emmanuel Musoni @@aut@@ Ibraheem Abu Siam @@aut@@ Lisa Schwartz @@aut@@ the Humanitarian Health Ethics Research Group @@aut@@
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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. 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author	Sonya de Laat
spellingShingle	Sonya de Laat misc RC952-1245 misc RC86-88.9 misc Research collaboration misc Ethical partnership misc Palliative care misc Humanitarian crisis misc Ethics misc Refugees misc Special situations and conditions misc Medical emergencies. Critical care. Intensive care. First aid A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda
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topic_title	RC952-1245 RC86-88.9 A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda Research collaboration Ethical partnership Palliative care Humanitarian crisis Ethics Refugees
topic	misc RC952-1245 misc RC86-88.9 misc Research collaboration misc Ethical partnership misc Palliative care misc Humanitarian crisis misc Ethics misc Refugees misc Special situations and conditions misc Medical emergencies. Critical care. Intensive care. First aid
topic_unstemmed	misc RC952-1245 misc RC86-88.9 misc Research collaboration misc Ethical partnership misc Palliative care misc Humanitarian crisis misc Ethics misc Refugees misc Special situations and conditions misc Medical emergencies. Critical care. Intensive care. First aid
topic_browse	misc RC952-1245 misc RC86-88.9 misc Research collaboration misc Ethical partnership misc Palliative care misc Humanitarian crisis misc Ethics misc Refugees misc Special situations and conditions misc Medical emergencies. Critical care. Intensive care. First aid
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title	A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda
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title_full	A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda
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author_browse	Sonya de Laat Olive Wahoush Rania Jaber Wejdan Khater Emmanuel Musoni Ibraheem Abu Siam Lisa Schwartz the Humanitarian Health Ethics Research Group
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title_sort	case analysis of partnered research on palliative care for refugees in jordan and rwanda
callnumber	RC952-1245
title_auth	A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda
abstract	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.
abstractGer	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.
abstract_unstemmed	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.
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title_short	A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda
url	https://doi.org/10.1186/s13031-020-00333-6 https://doaj.org/article/853de96a804e40399441f91304bdcd3b https://doaj.org/toc/1752-1505
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