Reflection 7(1) is ready for you to read.

Follow the link for online reading of Reflections 7(1)..

This edition of the HumEthNet newsletter looks at picturing humanitarian health ethics and two important new studies of perceptions & experiences of people often the subjects of aid campaigns.

Thank you to our contributors, Philippe Calain (MSF-Suisse & HumEthNet member), Siobhan Warrington of Oral Testimony, and David Girling from the University of East Anglia.

Can a Television Change Perceptions of Ebola?

13942782618113Fear and dread of Ebola is shared by patients, healthcare providers and the general public. Some of this fear comes from a lack of understanding of how the disease is experienced combatted. Follow this link to read a commentary by HHERG’s Sonya de Laat, Postdoctoral Fellow in Humanitarian Health Ethics at McMaster University, on the role of a television set in contributing to a change in perception about Ebola Virus Disease.

Television and Ebola. How televisions can change disease perception & reduce stigma

 

 

 

Cultural history of the flu: reducing the stigma of Ebola.

Follow the link for a blog post by HHERG’s Sonya de Laat, Postdoctoral Fellow in Humanitarian Health Ethics at McMaster University.

How can cultural history of ‘health’ change disease perception & reduce stigmaA brief comparison of Influenza, 1918-1919, and Ebola, 2014-2015

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Have Content to Share on Post-Research Ethics Analysis? Here’s a CfP for you!

PREA: Call for Abstracts

Abstracts are now being accepted for paper and poster presentations at an International Conference on Ethics & Humanitarian Research.

The conference is organised jointly by the PREA Research Team and The Ohio State University (OSU).

The conference takes place 25-26 March 2019 at OSU in Columbus, Ohio, USA.

Confirmed Speakers

Others will be added as confirmations are received.

More about the conference:

The Post-Research Ethics Analysis (PREA) project is funded by r2hc to address ethical issues in humanitarian research.

One output is a practical tool to facilitate reflection on and learning from ethical issues arising during humanitarian research. The tool will be launched at the conference, along with keynote lectures, accepted paper and poster presentations, and structured conversations between humanitarian researchers and ethicists.

Abstracts deadline: 31 December 2018.

The PREA project also has an open call for submissions of Case Studies in the Ethics of Humanitarian Research: http://www.preaportal.org/case-studies/

If you have specific questions about the Conference, please email info@preaportal.org.

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Upcoming abstract deadlines.

Don’t miss you chance to submit abstracts for the following events:

 

 

  • November 23: Canadian Bioethics Congress (CBS), Banff, Alberta, Canada, 22-24 May 2019.

 

Missed our event in Geneva? Looking for a summary? Here it is.

 

Have a look at a summary of the events that took place 26-27 September when the HHE Research Group visited Geneva.

Thank you to our co-hosts CERAH, and to all of our participants over the two days and one evening of exciting activities.

 

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By all means, if you have thoughts you’d like to share with us about our ongoing research or the events from September in Geneva, please contact us!

HHE Representation at HSR2018, Liverpool

From 8-12 October the Fifth Global Symposium on Health Systems Research was held in Liverpool, UK.

The HHE research group was well represented with a presentation on the Perceptions of Ebola Virus Disease Research project by Ani Chénier entitled “Beyond Triumphalist Discourses” and a poster on the Palliative Care in Humanitarian Crisis settings.

From the study on perceptions of EVD research:

The full citation of the presentation is:

Elysée Nouvet, Ani Chénier, Oumou Bah-Sow, John Pringle, Sékou Kouyaté, Sonya de Laat, Matthew Hunt, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Lisa Schwartz, Beyond triumphalist discourses: West African voices on the need to recognize and sustain national research capacity in the wake of the 2014-6 Ebola epidemic. Fifth Global Symposium on Health Systems Research, 8 12 October 2018,Liverpool, UK.

ABSTRACT:

BACKGROUND The 2014-6 West African Ebola epidemic, in which a neglected disease for which no effective treatment or vaccine was yet known claimed over 11,000 lives, was a stark reminder of the essential role that health research plays within health systems.

In 2016, we launched the “Perceptions and moral experiences of research conducted during the West Africa Ebola outbreak” study. This qualitative study seeks to better understand socially-situated practices and moral experiences of research conducted in public health crisis situations, and to deepen understanding of challenges to and strategies for the ethical conduct of research during public health emergencies. It explored, among other issues, the practical and ethical complexities of international research collaborations established during the outbreak.

METHODS We conducted in-depth semi-structured interviews with 108 stakeholders directly involved in research at trial sites in Guinea, Sierra Leone, and Liberia. Participants included: 1- people having participated in clinical and persistence studies; 2- people engaged in the conduct of research (as investigators or research staff), 3- local and international research ethics board members; 4- governmental and civil society leaders. Most (91%) were from West African countries.

RESULTS Participants identified many strengths of research conducted during the outbreak, notably: 1) the success of some international partnerships (especially vaccine trials), 2) the development of innovative and adapted strategies for communicating with participants, 3) opportunities for capacity building, especially for first-time researchers, and 4) rigorous and constructive oversight by national research ethic boards.

Key challenges or failures included:  1) limited opportunities for higher-level engagement of affected-country researchers within international partnerships, 2) limited engagement of mid- or late-career researchers in the development or leadership of studies, 3) unequal access to and control over research materials like bio-samples, and 4) failures to sustainably invest in national research institutions.

CONCLUSIONS Our findings highlight the important role played by health research within local and national health systems, and complicate triumphalist discourses about the role of ‘capacity building’ in international research. During the 2014-6 West African Ebola outbreak, efforts towards capacity building were appreciated by many. Yet many also expressed frustration with the lack of investment in national research infrastructure and institutions, and the lack of opportunities for mid- and late-career researchers from affected countries. This had important practical implications, notably for the setting of research priorities that reflect needs and possibilities at the national level. Capacity must not only be built: it must also be recognized, supported, and sustained.

 From the study on palliative care in humanitarian crises:

Full reference for the poster:

de Laat, S., Matthew Hunt, Elysée Nouvet, Olive Wahoush, Kevin Bezanson, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Wejdan Khater, Oumou Bah Sow, Emmanuel Musoni, Rachel Yantzi, Ani Chénier , Lisa Schwartz, Dying in the Margins: Palliative Care, Humanitarian Crises and the Intersection of Global and Local Health Systems, Fifth Global Symposium on Health Systems Research, 8 12 October 2018, Liverpool, UK, Abstract ID: 3989

The poster is available below (& here as a PDF):

deLaat_ID3989_Poster_HSR2018_Final

Abstract:

OBJECTIVES There is no doubt that the primary goal of humanitarian healthcare has to be to save lives. Given the extremity of the crises in which humanitarians respond, not all lives can be saved. There is a growing acknowledgment of the role of palliative care in humanitarian healthcare. Here we present an interpretive description of the experience of palliative care in a variety of humanitarian crisis settings. Our objective is to map the diversity of those experiences and to examine the innovations and inconsistencies of global and local health systems to assess the obstacles and opportunities of these health systems in the support of palliative care during international humanitarian crises.

METHODS Four case studies were identified through stakeholder meetings and key informant interviews that represent a broad range of humanitarian emergency situations where palliative care needs arise:

  • A public health emergency: Guinea during the Ebola Crisis;
  • An acute conflict & refugee situation: Syrian refugees in Jordan;
  • A protracted refugee situation: Congolese and Burundian refugees in Rwanda; and,
  • Natural disaster situations: various geographic settings.

For each case study, in-depth, semi-structured interviews exploring experiences, needs, frustrations, and possibilities for palliative care were conducted with patients or family members of individuals with a terminal or life-threatening condition suited to palliative care. Along with interviews with crisis-affected people, local and international humanitarian healthcare providers were interviewed at each site.

RESULTS Global and local health systems—independently and intersecting with each other—emerged as a recurrent source of barriers to the provision of palliative care. Dominant themes include: global restrictions and local cultural anxieties to accessing essential medications for symptom relief; importance of culturally relevant, and locally informed, care and psychosocial support; the lack of international and local palliative care guidelines, training, and support for the provision of palliative care during international humanitarian crisis events. Changes to global health systems and improved interaction between local and international actors were cited as enablers to comprehensive palliative care provision. Palliative care was recognized as an essential component of holistic, comprehensive humanitarian healthcare, and should never act as a substitute to health system improvements for curative care.

DISCUSSION The alleviation of suffering is central to the work of humanitarian healthcare, and yet competing priorities often result in a lack of attention to palliative care. Our study presents critical insight onto the role of local and global health systems in the provision of palliative care in contexts of humanitarian crises.