Death, dying, and care in Guinean Ebola Treatment Centres during the 2014-16 epidemic
READ THE FINAL CASE REPORT (GUINEA)
Co-leads
Dept of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON & School of Health Studies, Western University, London, ON
Prof. Pathé Diallo (Guinea)
Director of the Kipé Medical Center and Health Consulting
Faculty of Medicine, Pharmacy, Odonto Stomatology
Co-investigators
President of the National Ethics Committee for Health Research
Head of the Pneumology Unit
Ignace Deen National Hospital, Conakry, Guinea
Alpha Diallo, MSc.
Chef de service Recherche & Développement
Ministère de la Santé Publique,Conakry
Enseignant et chercheur
Université de Conakry-Guinée
Matthew Hunt, PhD, PPT
Professor, School of Physical and Occupational Therapy
McGill University, Montreal, QC
Kevin BezansonMD, CCFP(PC), FCFP, DTMH, MPH
Northern Ontario School of Medicine, Lakehead & Laurentian Universities and Thunder Bay Regional Health Sciences Centre, Thunder Bay, ON
Lisa Schwartz, PhD
Professor & Arnold L. Johnson Chair in Healthcare Ethics
McMaster University, Hamilton, ON
Sonya de Laat, PhD
Postdoctoral Fellow in Humanitarian Health Ethics
Dept. of Health Research Methods, Evidence and Impact, McMaster University
Project Manager, Guinea
Sekou Kouyate
Socio Anthropological Analysis Laboratory of Guinea, University of Sonfonia
The case study
Objectives:
One of four case studies conducted within the broader HHE Palliative Care in Humanitarian Crises program of research, the Guinea case study has the following objectives:
- To document and deepen understanding of how palliative care needs were perceived and managed in Ebola Treatment Centres during the 2014-16 Ebola epidemic, as perceived by those directly engaged with this care (care providers or supervisors (Guinean and foreign), recipients of care, or family);
- To advance evidence-based reflection on how best to support the provision of ethically and contextually appropriate palliative care to patients and families when appropriate, public health emergencies that involve patients being in isolation units;
- To deepen understanding of what counts as good or poor end of life care in the eyes of Guineans, towards strengthening local capaciy for culturally and contextually appropriate palliative care in Guinea during but also outside humanitarian crisis settings.
Summary of our approach:
Semi-structured in-depth interviews (N=16) were conducted by an experienced anthropologist (SK) with a range of actors positioned to speak to the provision or absence of palliative care in Ebola Treatment Centres (ETC) in Guinea during the 2014-16 epidemic, including patients who survived, family of patients who died in the ETC, nurses, a psychosocial support worker physicians, and an Imam. All but two interviews (conducted with healthcare professionals from Northern countries who volunteered during the epidemics) were conducted with Guineans. Interviews were conducted in the language of preference of the participant (Soussou, French, English or Malinké). Interviews were completed between November 2017 and June 2018. Ethics approval for this study was received from the Comité National D’Ethique de la Recherche en Santé (Guinée) and the Hamilton Integrated Research Ethics Board.
Limitations:
All interviews were conducted, for feasibility purposes, in the region of the country’s capital, Conakry. Guineans recognize several culturally distinct groups throughout its territory, and different regions have different relationships to the central government and national health and public health system that was responsible for coordinating the Ebola response. Further research conducted across a range of sub-national regions is recommended, to establish whether or not findings from this study are generalizable across Guinea.
Project Outputs:
Refereed Articles
Nouvet, E., Sivaram, M., de Laat, S., Sanger, S., Banfield, L., Favila Escobio Rodriguez, P., and Schwartz, LJ. (2018). “Palliative care in humanitarian crises: a review of the literature.” Journal of International Humanitarian Action(2018) 3:5, 1-14.
Invited Presentations
Nouvet E. “Palliative care during international humanitarian action: a multi-sectoral global survey.” 7th International Committee for Military Medicine Workshop on Military Medical Ethics. May 4-6, 2017 – Forum Lilienberg, Ermatingen, Switzerland.
Peer-Reviewed Presentations
Nouvet, E., Kouyaté, S., Bezanson, K., Bah-Sow, O., Diallo, AA., Schwartz, L., Hunt, M., Yantzi, R., de Laat, S., Diallo, P. (2018). “Preparing for the Dying and ‘Dying in Honor’: Guineans’ Perceptions of Palliative Care in Ebola Treatment Centres,” 22nd International Congress on Palliative Care, 2-5 October (5 Oct), Montreal, Canada.
Wahoush, O., Khater, W., Alnajer, M., Abu-Siam, I., de Laat, S., Musoni, E., Bezanson, K., Nouver, E., Bernard, C., Elit, L., Redwood-Campbell, L., Upshur, R., Yantzi, R., Hunt, H., Schwartz, L., (2018). “Negotiating and Navigating Access to Refugees and Residents While Researching Palliative Care in Humanitarian Crisis Situations: Results from Four Case Studies.” 22ndInternational Congress on Palliative Care, Montreal, 2-5 October (3 Oct).
Posters
de Laat, S., Matthew H, Elysée N, Wahoush O, Bezanson K, Bernard C, Redwood-Campbell L, Elit L, Khater W, Oumou Bah Sow, Musoni E, Yantzi R, Chénier A, Schwartz L. “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
Blog posts
Barry, Ibrahima (January 30, 2017) Ebola: The Cruel Loss of a Father. Humanitarian Health Ethics Research Net, https://humanitarianhealthethics.net/2017/01/30/ebola-the-cruel-loss-of-a-father/.
Kouyaté, Sékou (Pending) The challenges of developing a career as anthropologist/researcher in Guinea.
Humanitarian Health Ethics 