0 comments on “Missed our event in Geneva? Looking for a summary? Here it is.”

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!

0 comments on “HHE Representation at HSR2018, Liverpool”

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.

 

0 comments on “Becoming an anthropologist in post-Ebola Giunea”

Becoming an anthropologist in post-Ebola Giunea

Follow this link to the blog authored by Sekou Kouyate on the opportunities and challenges of becoming an anthropologist and a qualitative researcher in post-Ebola Guinea.

Kouyate is the research assistant and coordinator for HHERG’s two R2HC funded studies in Guinea: on perceptions of research and on the provision of palliative care during the 2014-16 Ebola Virus Disease outbreak.

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1 comment on “Perceptions of EVD Research — August 2017 Progress Report”

Perceptions of EVD Research — August 2017 Progress Report

One year into this project, we are finalizing data collection, moving forward with analysis, and have begun dissemination activities. Progress includes:

Fieldwork:

  • 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.
  • Stakeholders include:
    • 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.

Analysis:

  • 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).
EVD Report Pic
Photo: Ebola education mural outside Université Sonfonia, Conakry, Guinea.

Outputs to date

Invited Presentations

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

Peer-Reviewed Presentations

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

Workshop Participation

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

 

0 comments on “New Fears, Old Problems – Palliative Care, EVD & the DRC”

New Fears, Old Problems – Palliative Care, EVD & the DRC

New Fears, Old Problems:
An Appeal for Palliative Care in the DRC Ebola Virus Outbreak

by Dr. Pedro Favila Escobio, MD (MS Palliative Care)

As a medical doctor involved in humanitarian response, I (as many of my colleagues were), was very concerned and followed very closely the evolution of the Ebola Outbreak in West Africa.

I was in the Guinean capital city of Conakry in November 2015 when Nubia, a one month old baby girl and the last Ebola case in Guinea whose mother had died because of the outbreak, was released from the Ebola Treatment Centre. What to do, what not to do, clinical and case management, community involvement, social mobilization, infection and prevention control, priorities, constraints, and the post-Ebola response scenario were all familiar words in my thoughts during that period. Palliative care was not, for whatever reason, in my head.

In Coyah, 50km away from Conakry, just before leaving the country I met a traditional midwife who, during the peak of the outbreak ,was one of the frontline workers in the response to the epidemic. “Despite all the efforts, nobody will bring us back our dead and repair their suffering” she said.

I barely could imagine the suffering of all those affected by the outbreak. Of the approximately 40 million of people around the world in need of palliative care services, only 14% have access to them, mainly in high income countries. Back home, in Spain, during my specialization training as a Family and Community Medicine Doctor and after specialization, palliative care was part of my everyday work life, and a basic component of the integrative health services we provide. So why, working as a humanitarian professional, was I neglecting what I consider a basic pillar in the standard of care?

On 11th May 2017, a new Ebola outbreak in DRC was declared. This outbreak thankfully seems to be coming under control as I write, but this does not change the fact that to this day there are no proven effective treatments or vaccines against Ebola. The mortality rate remains at 50%. Will palliative care be part of what healthcare providers have in their minds, and are they prepared to provide it when facing such deadly outbreaks?

A review of the literature (publication forthcoming) on the clinical management and treatment of EVD in West Africa yields few mentions of care provided to patients in Ebola Treatment Centers that was not curative in intention. Indeed, palliative care is practically absent in reports and recommendations for EVD patient management. Those very few articles that mention palliative care being provided do not include an explanation on the provision of such services.

Two challenges of providing palliative care in an Ebola context are clear from this literature. First, limited understanding of when Ebola patients are nearing death makes knowing which patients are beyond recovery and dying. Secondly, in some cultural contexts and certainly in the three most affected West African countries during the last outbreak, the administration of opioids and other pain relief to dying patients was controversial and required careful perceptions management. In an environment of high distrust, morphine being given before a patient’s death risks being interpreted and reported by surviving patients (and even healthcare staff) as the cause of death. This could cause serious harm to the reputation of ETCs and its staff.

West Africa, DRC, and Beyond
I applaud the recommendations of WHO for the implementation of strategies for prevention and control of the epidemic, which include case management among others. Updated WHO guidelines for the management of EVD patients following the epidemic in West Africa point out that health personnel have an obligation to provide symptomatic relief and palliative care when necessary, and that terminally ill patients require end-of-life care provided by trained personnel, including psychosocial support for the patient and family.

I hope that inclusion of and access to essential palliative care medical kits will be facilitated, along with basic training and sensitization in palliative care for all health personnel working in the response. This will improve decision making and contribute to improvement of the processes of communication between health personnel, patients, family and community.

The recent opening of an ETC in Likati and the possible opening of a new centre in Muma, DRC should be used to assess the quality of care and the correct use of medicines necessary for pain control and patient well-being.

Equally, with the aim of guaranteeing the highest level and quality of care, priority should be given to promoting research on palliative care that allows us to offer conclusions about the effectiveness of palliative care in humanitarian crisis contexts, taking into account the complexity of providing services in such contexts.

Certainly much more should be done to make palliative care part of any health intervention. The first step is to stop the current outbreak of Ebola from DRC, to protect the lives of those affected and to ensure that health professionals, patients, and families know that when survival options have disappeared, it is not necessary to die in pain and suffering.

Dr. Escobio

 

Pedro Favila Escobio is a medical doctor specialized in family and community medicine, with a master in palliative care working in the humanitarian sector. His practice is focused especially on neglected diseases, displaced populations, migrant health and emergency response. He can be reached at p.favila[at]gmail.com.