Network for research on death, dying and end of life care among Syrian refugees in Lebanon

Lead Research Organisation: University of Glasgow
Department Name: School of Interdisciplinary Studies

Abstract

The Syrian Civil War has created one of the worst humanitarian crises in history. Around 5 million Syrians have fled their country to escape the prolonged horror and violence of the conflict and more than one million of them are in Lebanon. Over 4000 refugees cross into Lebanon on a daily basis, overwhelming its already fragile social, political, and economic infrastructure. On reaching Lebanon, new troubles confront the Syrian refugees who must now endure the suffering and hardships of the temporary camps.
This refugee movement has put a huge strain on the resources and capacity of the Lebanese government and local communities. The Lebanese health system has seen a massive influx of additional demand and is struggling to cope. One particular aspect of the problem is the suffering of older refugees. Often at the bottom of the pecking order, the needs of older refugees are frequently neglected, unrecognised or ignored. Yet about a half of these older people are known to have chronic health problems and are at risk of dying through lack of access to healthcare. Others have advanced disease and require palliative treatments to manage pain and other symptoms.
Very little is known about how these treatment and end of life care needs are being addressed. Although some palliative care services exist in Lebanon they have limited resources and lack the capacity to deal with the level of need in the refugee camps. Yet palliative care availability and access have been acknowledged as fundamental human rights.
The main purposes of the project are therefore: 1) to strengthen research capacity to investigate end of life care issues and needs among refugees 2) to enhance related cooperation and coordination between researchers in Lebanon and the UK in order to build capacity for high quality new studies and interventions that can address these problems.
To foster such a network, the project will bring together a mixture of expertise in special workshops focussed on end of life care for refugees in Lebanon. It will conduct a rapid appraisal of the issues and look at ways to develop research responses. It will provide mentoring and training to local researchers from international experts in order to build expertise and capacity. It will also lead to a short film on the issue to raise awareness and sensitize others to the issue.
By these means the network will contribute to the development of research, policies and plans to promote end of life care for Syrian refugees in Lebanon. The lessons learned will in turn be relevant to other similar humanitarian emergencies elsewhere.

Planned Impact

This project will contribute to developing research, policies and plans to promote end of life care among Syrian refugees in Lebanon. In turn, the knowledge gained will be relevant to humanitarian emergencies elsewhere, when similar challenges are faced.

The project will promote health care system development in Lebanon in the context of the refugee crisis. The project's impact will have five key aspects.
1) It will lay the foundation for a research network and partnerships between academic and non-academic stakeholders from the UK, (University of Glasgow) and Lebanon (American University of Beirut, St. Joseph University, Beirut, HelpAge International, Lebanon) to foster research and intervention in the area of end of life care for refugees.
2) It will produce four specific outputs: a scoping report, a research grant proposal, a website and a film - all of which will help to better understand the end of life care situation and needs among Syrian refugees.
3) It will enhance capacity for two researchers from Lebanon on end of life research through personal mentoring.
4) It will use public engagement activities to raise awareness among and sensitize a wide range of stakeholders on the end of life issues concerning refugees.
5) It will encourage HelpAge International to incorporate end of life issues into its portfolio of activities.

Publications

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Title Documentary Film 
Description A documentary film was made on the experience of death, dying and end of life care of Syrian refugees in Lebanon. 
Type Of Art Film/Video/Animation 
Year Produced 2017 
Impact The film has sensitized both the practitioners and researchers involved in the area of migration, refugee and humanitarian crisis about end of life care issues of refugees. . 
 
Description The most significant achievement of this award is the establishment of a network of academics, policy makers and practitioners from multidisciplinary background from global South and North to engage with challenges and issues on death and dying among refugee populations. Although, the project focused on Syrian refugees in Lebanon, the team started to see similar patterns and challenges among other refugee and displaced populations in Asia, Africa and the Middle East. Through workshops, research visits and a scoping exercise published in Journal of Palliative Care, the team explored how emotion, bodies, belief, culture, society and the state intersect in the context of death and dying of refugees and where specific end of life care challenges occur. The most important finding of this exploration was that there is a lack of social, political, cultural and environmental understanding of death and dying of refugee and displaced populations in the mainstream palliative care as well as humanitarian frameworks. As a continuation of this collaboration the UK PI and the Lebanese research partner along with other colleagues have published another significant journal article on the mental health aspect of the refugees in the journal 'Qualitative Health Research'. This study revealed the conflicting perspectives between the mental health practitioners working in the refugee camps and the refugee themselves. This is a novel insight for future humanitarian work. Another significant and novel achievement of the project is the making of a documentary film on the death and dying issues of refugees. This has been shown both in Lebanon and UK to humanitarian policy makers, practitioners and academics which generated lively discussion. We believe this has sensitised the relevant stakeholders which will encourage them to incorporate death and dying issue in their future planning. As a follow up of this partnership we have developed a larger grant application in 2019 to design a cost effective palliative care package for refugees based on the experience form Syrian refugees in Lebanon and Rohingya refugees in Bangladesh. The grant application was unfortunately unsuccessful. However, we are refining the proposal to submit it to the next call. These activities demonstrate the continuity of the partnership. There were two key objectives and they are both met through the project activities: i. To strengthen capacity in interdisciplinary research on end of life issues among refugees: The award facilitated a group of multidisciplinary and interdisciplinary researchers, policy makers and practitioners to come together. In this process the capacity to examine death and dying of refugee and displaced populations among the project partners have increased. A combination of medical sciences, psychiatry, medical anthropology, public health and social anthropology has come together to critically examine end of life issues among refugees. ii. To enhance networking, cooperation, and coordination between academic and non-academic stakeholders in Lebanon and the UK on this topic in order to build capacity for high quality new studies and interventions in this area: Networking among academics [Universities of Glasgow, Sussex, York in the UK; American University of Beirut and Saint Joseph University in Lebanon], policy makers [Worldwide Hospice Palliative Care Alliance, Ministry of Health in Lebanon] and practitioners (HelpAge International] have increased. One of the project activities included creation of a project website which could not be achieved. This was due to delay in finding and recruiting an appropriate web designer in Lebanon due to administrative problems in the partner organization.
Exploitation Route There were three thee key findings to this award that the team has agreed to take them forward by taking initiatives. Some of the initiatives have already been materialized.
i. There is a need for further policy and operation research in the area of death, dying and end of life care of refugee. The team with Dr Shahaduz Zaman as the lead has already developed a new grant proposal including a recent refugee community namely, Rohingyas in Bangladesh. The proposal was titled. 'Death, dying and end of life care of forcibly displaced Syrian and Rohingya people: Towards a strategy'. The grant proposal was submitted to ESRC in 2019 which was unsuccessful. The team is currently revising the grant application based on the reviewers comments for possible future submission.
ii. There is a lack of understanding of the role of social, cultural and traditional systems of refugees in death, dying and end of life care. Dr Janaka Jayawickrama has already got in the process of developing an operational framework to engage with humanitarian agencies and refugees in this process.
iii.Mental health and wellbeing of refugees in death, dying and end of life care is not necessary clinical, but social, political, cultural and environmental. As part developing a mental health framework that is rooted in social, political, cultural and environmental context of refugees, Dr Hala Kerbage has already lead an exploratory study on the mental health perspective of health care providers and refugees which resulted a publication in the journal 'Qualitative Health Research'. A paper based on the report of the scoping exercise has also been published in 'Journal of Palliative Care'.
The film made as part of this project has been shown in seminars and conferences in UK and Lebanon. The film is also been used as a learning and teaching resource for post graduate students.
Sectors Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice

 
Description The project had impact in three areas: 1. Collaboration: The project laid the foundations for a research work and partnership between academic and non-academic stakeholders from the UK and Lebanon. The partners have already developed a follow up research proposal on death dying and end of life issues of refugees and submitted for grant to ESRC. The application was unsuccessful. However, the team is currently revising the proposal based on the reviewers comments and preparing to submit it to a next round of funding call related to refugee issues. 2. Capacity building: Capacity-Building in both research and public engagement relating to end of life issues among refugees has taken place. Two researchers from Lebanon were trained in end of life research, as well as a filmmaker was trained in public engagement for research. Two articles has been published in peer reviewed journal one lead by an early career researcher and the other by a mid career researcher both from Lebanon. 3. Recognition: Recognition from partner organizations in Lebanon on the significance of research concerning death, dying and end of life care issues among people living in refugee camps has been achieved. A public engagement event that included a film screening on the same topic resulted in commitment by the relevant stakeholders to exploring ways to incorporate end of life issues for refugees into their activities. The academics and researchers of migration and end of life care in UK as well have committed to use the film as learing and teaching resourse for post graduate students.
First Year Of Impact 2018
Sector Communities and Social Services/Policy,Healthcare
Impact Types Cultural,Societal,Policy & public services

 
Description A documentary film on death, dying and end of life care experience of Syrian Refugees in Lebanon
Geographic Reach Multiple continents/international 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theater: A follow on project
Amount £83,707 (GBP)
Funding ID AH/S005919/1 
Organisation Arts & Humanities Research Council (AHRC) 
Sector Public
Country United Kingdom
Start 02/2019 
End 01/2020
 
Description Partnership to ensure the sustainability of a public health palliative care project in Bangladesh through community theatre
Amount £164,470 (GBP)
Funding ID AH/R005923/2 
Organisation Arts & Humanities Research Council (AHRC) 
Sector Public
Country United Kingdom
Start 01/2018 
End 04/2019
 
Title Scoping Excercise 
Description A scoping exercise was done to identify areas where innovative, interdisciplinary research can contribute to addressing the policy and practice needs for death, dying and end of life issues among refugees. The purpose was to do a synthesis of existing academic and non-academic content on this issue and a review of barriers and opportunities, as well as a mapping of the published evidence on death, dying and end of life experiences among refugees, which will feed into policy and decision-making. Eligibility criteria - Population of interest: Refugees worldwide and populations/individuals who were internally or externally displaced due to wars, conflicts, non-natural disasters, or emergencies - Setting of interest: The phase of end of life, dying and death that takes place following the refuge or displacement (within original country or to another hosting country) reported after the year 1980 - Study design: Any study design, including but not limited to: news, editorials, commentaries, opinion pieces, technical reports, primary studies, narrative reviews, systematic reviews, and policy briefs Exclusion: Papers that are not published in the English language - Papers representing statistics of mortalities and focusing on the causes of death among refugees - Books and book reviews Information Sources - Medline (1946 till July 17, 2017) - Scopus (July 16, 2017) - CINAHL (July 17,2017) - JSTOR (July 24,2017) - The UNHCR database Refworld (September 03, 2017) Only seven articles were retrieved that satisfy the criteria. The lack of evidence on refugees' experiences in relation to the process of dying, death and after-death, is problematic as it exacerbates the vulnerability of an already suffering population. This scoping exercise has been published as a journal article in 'Journal of Palliative Care'. 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? Yes  
Impact The finding of the scoping exercise revealed the gross lack of academic interest on this crucial topic of refugee crisis. It has policy and research implications. This scoping exercise will be a strong supporting document to develop the argument in favour of rigorous research agenda on this topic. 
 
Description Network for research on death, dying and end of life care among Syrian refugees in Lebanon 
Organisation American University of Beirut
Country Lebanon 
Sector Academic/University 
PI Contribution I have led the conceptual framework of the project proposal. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Collaborator Contribution All the partners contributed from their disciplinary expertise in project planning. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Impact Two journal articles and one video documentary has been produced as part of this partnership.
Start Year 2017
 
Description Network for research on death, dying and end of life care among Syrian refugees in Lebanon 
Organisation HelpAge International
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution I have led the conceptual framework of the project proposal. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Collaborator Contribution All the partners contributed from their disciplinary expertise in project planning. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Impact Two journal articles and one video documentary has been produced as part of this partnership.
Start Year 2017
 
Description Network for research on death, dying and end of life care among Syrian refugees in Lebanon 
Organisation Saint Joseph University
Country Lebanon 
Sector Academic/University 
PI Contribution I have led the conceptual framework of the project proposal. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Collaborator Contribution All the partners contributed from their disciplinary expertise in project planning. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Impact Two journal articles and one video documentary has been produced as part of this partnership.
Start Year 2017
 
Description Network for research on death, dying and end of life care among Syrian refugees in Lebanon 
Organisation University of York
Country United Kingdom 
Sector Academic/University 
PI Contribution I have led the conceptual framework of the project proposal. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Collaborator Contribution All the partners contributed from their disciplinary expertise in project planning. Within the report period which is Nov 17- Dec 17 there is no output to report. From Glasgow University I moved to Sussex University with the grant where the project activities started. This will be reported in a separate form.
Impact Two journal articles and one video documentary has been produced as part of this partnership.
Start Year 2017