Author: Humanitarian Health Ethics Research Network
Humanitarian Healthcare Ethics is a place to find practical and educational material for humanitarian healthcare workers as well as students and scholars of humanitarian healthcare ethics. The website developed out of empirical research on the ethical dilemmas faced by humanitarian healthcare professionals working in humanitarian crises, disasters or areas of extreme poverty.
Health professionals’ lived experiences of palliative care provision in humanitarian crisis: Moral experiences confronting the suffering of patients who are dying or likely to die in settings of war, disaster, or epidemic.
The poster is based on ongoing research for a R2HC funded project entitled:
The research project is funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme. The Research for Health in Humanitarian Crises (R2HC) programme aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. Visit www.elrha.org/work/r2hc for more information. The R2HC programme is funded equally by the Wellcome Trust and DFID, with Elrha overseeing the programme’s execution and management.
Refugees and many migrants suffer from limits on their abilities to move around the world, even in pressing or urgent circumstances. They are often forced to leave their homes for reasons beyond their control, including war and civil unrest, political and religious persecution, economics, or famine and other natural or man-made disasters. Once displaced, whether internally or externally, they face pressing needs for food, water, shelter, and health care. Local governments, international agencies and non-governmental organizations often struggle with providing for their needs, particularly in resource-poor regions of the world. Recent socio-political changes in the United States, Western Europe and elsewhere have placed additional restrictions on the rights of migrants and refugees.
In solidarity with these refugees and migrants, we are hosting a no-travel virtual conference to explore the ethical, legal, philosophical, and social issues associated with refugee and migrant health in a world of economic, geopolitical, and psychological borders.
1st World Congress on Migration, Ethnicity, Race and Health (MERH)
The MERH 2018 Congress is hosted by an independent, non-profit making company working under the auspices of The University of Edinburgh, the European Public Health Association and NHS Health Scotland. We intend to deliver to you a memorable, affordable, academic and social programme in one of the most spectacular cities in the world.
Congress aims :
To improve research, population health and health care for migrants and other discriminated-against populations
To bring together policy, social science, clinical, social service and public health perspectives and share and transfer learning within and across countries.
To examine contemporary problems across the globe and debate suggested solutions
To Consider health effects of social, environmental and demographic change associated with population migration, and the effects on diseases and their causes
To find ways to overcome differences in concepts and terminology so the field can be understood internationally in acceptable language.
To provide opportunities for people to showcase their work and to meet to share experience and motivations
To build networks that will last beyond the Congress itself
One year into this project, we are finalizing data collection, moving forward with analysis, and have begun dissemination activities. Progress includes:
We have conducted interviews with 108 stakeholders, over 90% of these being with stakeholders in the three countries most severely affected by the epidemic: Guinea, Liberia, and Sierra Leone.
Research participants, people who opted not to participate in research projects for which they were solicited, and proxy-decision makers who made treatment decisions for relations too ill to provide consent
Research Ethics Board members who evaluated proposed research projects, either for national-level boards serving affected countries or for organization-specific boards operating within international organizations that assisted with the response
Investigators who led or supported research projects conducted during the outbreak, as well as healthcare providers who worked on the frontlines of the epidemic, administering experimental interventions and monitoring patients’ condition
Public sector representatives who were called on to oversee or regulate research conducted during the epidemic: decision-makers in health and other ministries involved in planning the response to the epidemic; representatives of Ebola survivors’ associations and other civil society groups; others
We have spoken to people involved with a range of research projects: vaccine trials, pharmaceutical and other intervention trials, and observational studies.
We have conducted a review of publications exploring or addressing ethical and practical challenges associated with research conducted in West Africa during the Ebola outbreak. Over 2,000 peer-reviewed articles were selected for screening by members of the research team; of these, over 100 were selected for inclusion in the review. Findings are currently being written up for publication.
Analysis of interviews is underway. Draft report of findings will be ready by November 2017.
We are preparing meetings to present and discuss draft report of findings with stakeholders and research participants in West Africa in November-December 2017. Participants’ feedback will be incorporated into analysis and output materials.
We are preparing a meeting of co-investigators in Hamilton in December 2017. This will serve to finalize findings, prepare a recommendations draft paper, and finalize components of a webinar (to be held in January).
Outputs to date
Nouvet, Elysée (2016) Recherche anthropologique au service de la santé publique : méthodes, considérations, et EER (évaluation ethnographique rapide). Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre
Schwartz, Lisa (2016) L’éthique de recherche socio-anthropologique. Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre
Nouvet, Elysée & Schwartz, Lisa (2017) From the front lines: Trialing research ethics in the time of Ebola. Paper presented at the World Association for Disaster and Emergency Medicine Congress on Disaster and Emergency Medicine. Toronto, Canada. April 28th
Nouvet, Elysée (2017) The need to care, learn, and improvise: Enacting research ethics during the West Africa Ebola outbreak. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th
Pringle, John (2017) Lessons in research ethics: Experiences of clinical research participation during the West Africa Ebola crisis. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th
Pringle, John. Ethical Design of Vaccine Trials in Emerging Infections Workshop. Hosted in conjunction with the Oxford Global Health and Bioethics International Conference and Sponsored by a Wellcome Strategic Award and the Ethox Centre. University of Oxford. July 18-19, 2017
The Humanitarian Encyclopedia is a collaborative project with humanitarian and academic partners, based on co-creation, combining theory and practice to support the growing ranks of humanitarian stakeholders in their strategic thinking, design and implementation of humanitarian responses.
It responds to the documented need to interrogate how terms and concepts used in humanitarian action are understood and applied across time, cultures, and organizations. This shall support the reflective involvement of an expanding range of stakeholders while building on the existing theoretical and empirical knowledge and practical experiences at local and regional levels.
Visit the site often and see how you can be involved in continue to build a humanitarian language.
We’re all familiar with pictures of refugee camps and of settlements inhabited by people forced from their homes. Depicted are shelters, some more roughshod than others. The structures can provoke a range of emotions, the least likely of which are feelings of comfort and belonging. These are really not the types of places people would call home if circumstances allowed. While the pictures do provoke reactions, the types of which are determined largely by our subject position, there is much these pictures cannot tell. The pictures can invite us—if we are willing—to look beyond their content, beyond their frame. In that case, what we are looking at transforms from pictures of shelters to commodities of a capitalist humanitarian system, to products of generations of global structures of violence, of transnational mechanisms of exclusion, and of regime made disasters, and to pictures of new, makeshift communities. The pictures can also help us imagine (so much as imagining is possible considering that even they are shaped by our cultural and personal experiences) the life people left behind, the good times, the terrifying ones, the ways of life gone perhaps forever and the ways of life currently lived and being adapted to. We may even gain a sense through the images of the ongoing anxieties, the hopes, and even the dreams (the latter having even become the focus of some recent photography of refugee experiences) of people whose trajectories have been forcibly altered. For the luckier ones, these places will be temporary residences. For others, these will be the last places they know as age, disease or the extensions of conflict take their lives.
This issue of reflections focuses on the politics and ethics of healthcare provision to refugees. The provision of healthcare to individuals displaced and on the move is an ethical imperative. It involves a responsibility to attend to the physical or emotional suffering of people, and it is also as a way of extending and integrating newcomers into their new (possibly, but not likely, temporary) community.
Also included in this issue are reports on refugee healthcare in two countries that have been taking a great proportion of Syrian refugees. One is a broad overview of refugee healthcare in Jordan—with a particular focus on palliative care—produced by McMaster Global Health student Madeline McDonald. The other is a summary prepared by Dr. Michel Daher about the ethics and the current state of providing universal healthcare to refugees in Lebanon. In their own way, each report reveals the extent to which the governments and healthcare professionals in these countries are inherently involved in attending to the physical and psychological wellbeing of their new, unexpected arrivals. The reports also point to where current practices fall short, especially as concerns the response by the larger global community, thus providing us with more knowledge with which to read pictures of refugee experiences.
With over 65 million people having been forcibly displaced from their homes there is a growing sense of normalization around this phenomenon, even though to consider this situation as the new (or growing) norm is grounds for provoking indignation, as John Pringle demonstrates in this edition’s Commentary. A degree of normalization within the camps and settlements, however, is a crucial imperative for those living within them as it provides an existential sense of wellbeing, and of being a Well Being rather than disposable. This is the theme uniting ongoing projects summarized in this issue.
Sincerely, Sonya de Laat, PhD(c)
Co-Editor of Reflections,
PhD candidate in Media Studies, FIMS Western University
Research Coordinator, HHE research group, McMaster University
Dr. Olive Wahoush has been an advocate and researcher of refugee health care since 1987. She came to this topic first through teaching undergraduate nurses maternal newborn health in a refugee camp in Jordan in the 1987 and later through hospital administration and volunteer roles in Pakistan and Canada. Olive trained as a nurse in Northern Ireland during the 1970s a period of civil conflict, during that time she was exposed to ethical issues around triage, resource allocation, discrimination, and direct patient care. Later during her time as a nurse educator and leader in the Middle East and Pakistan she became interested in global health issues when she was exposed to situations where populations were on the move, capacity development was essential in health service programs and in health professional education.
Olive emigrated to Canada in 1992 and continued to build on her interests in maternal and child health, community engagement and outreach to include vulnerable and underserved groups in Hamilton and Toronto. She completed her PhD at UofT and her doctoral research examined health care access and experiences of refugee and refugee claimant families in Hamilton. Through her roles at the School of Nursing at McMaster University, Olive was instrumental is leading and promoting research with refugees, newcomers and other underserved populations. Many undergraduate and graduate students now complete experiential learning placements in Hamilton, Toronto and Internationally with agencies serving refugees and other underserved groups.
When it comes to health for refugees as they work to settle in a new environment, Olive sees equitable outcomes as a fundamental ethical concern, it is not enough to focus on access, some people need more help than others to get to the same outcome. For example newcomers such as refugees need time, language development and information about their adopted country and the new systems they need to use to live well. When asked about what the main priorities are for refugee healthcare abroad, Olive identified respect and recognition of refugees’ situations and conditions [or, refugeedom] as a priority area for researchers concerned with ethical dimensions of care or of research. Although there are common concerns across refugee populations that enable rapid response programming, there are also significant differences related to the circumstances such as war or climate change and history affecting populations, settings and individuals.
Recent research Olive has been involved in or leading include studies focused on reproductive health, health and resettlement of refugee and refugee like families in Canada and exploring the selection process for refugees in transit countries like Jordan. She has recently become a co-investigator on the HHE project exploring ethical aspects related to palliative care in humanitarian crisis situations. She has made invaluable connections with practitioners, academics and researchers on the ground in Jordan in order to learn about the provision of palliative care in refugee contexts (in camps and in urban settings) in that country.