Local investigators:

Jordan lead:

 Wedjan Khater, PhD, Department of Adults Health, Jordan University of Science and Technology.

Canadian lead:

 Olive Wahoush, PhD, School of Nursing, McMaster University.

Literature report document:

Summary of case study’s protocol:

Research objectives:

To develop evidence clarifying ethical and practical possibilities, challenges, and consequences of palliative needs during public health emergencies. To inform realistic, context-sensitive guidance, education, and practices for the provision of palliative care during public health emergencies. To develop a baseline of current palliative care provisions for clinical and psychsocial care in humanitarian action against which progress can be measured.

The need for humanitarian agencies to provide palliative care (e.g., end of life care) is not new. This study will help confirm whether and to what extent, humanitarian organizations train staff in palliative care approaches and competencies. This project will contribute to developing guidance and training aimed at better preparing humanitarian healthcare teams for palliative care needs in a variety of humanitarian healthcare settings from public health crises, conflict, natural disaster, and deprivation. This is a multi-sited, mixed methods study and it involves: 1) a critical literature review to locate values, logics, and conditions that limit or support the provision of palliative care by humanitarian organizations, 2) a survey to investigate to what extent humanitarian organizations enable their staff to provide palliative care, 3) interviews with a variety of local and internationals, professional and lay, stakeholders to better understand current norms and lived experiences of palliative care needs in public health emergencies.

The project consists of four case studies that are specific to humanitarian emergency situations. Three of these are country specific: (1) Guinea—public health emergency (e.g., Ebola Virus Disease); (2) Jordan—refugee camp in high resource setting; and, (3) Rwanda—long-term refugee camp in low resource setting. The fourth is a thematic case study: natural disasters. This application is for ethics review of the Case Study #2—Jordan.

Methods:

Case Study #2 will consist of semi -structured in-depth interviews, or focus groups, with various local and international stakeholders to better understand current norms and lived experiences of palliative care needs in public health emergencies. The refugee camps in Jordan represents one of the four comparative sites involved in this research study. It represents an active and acute refugee camp situation within a predominantly high income/SES context.

Sites have been purposively selected based on information from the interviews we have conducted with humanitarian policy-makers and managers, and on the following 5 criteria: 1) our team has experience working in the region during humanitarian crisis and has a network of contacts that may facilitate access, 2) interviews will not compromise or stigmatize participants, 3) the site is not at present in state of crisis, 4) the sites are distinct from one another, for greater comparative value and greater potential to yield unique findings, e.g., sites may be selected because they are linked to different aid organizations, are in different regions of the world, or represent different types of emergency (e.g., refugee camp or rapid-onset disaster) 5) approval from local Research Ethics Committee or Ministry of Health.

Purposive and snowball sampling from our network members and partner organizations will identify relevant local and international healthcare providers as potential participants. Participating communities will be approached through appropriate channels identified by local ethics oversight committees and site administration. Recruitment emails, letters and telephone transcripts are included.

Following recommendations from our partners, and with endorsement from the UNHCR, health providers within the camp will identify potential refugee participants for interviews by providing the names and contact information to the research team. The research team will then contact identified potential participants by phone to explain the study, invite participation for interviews, and then make arrangements to meet with families/individuals. From there, the team will use a network/snowball approach to recruitment for the remaining interviews.

While the majority of participants will be medical and humanitarian professionals, we anticipate including interviews with community members both at Al Zaatari camp, refugees along with Jordanian nationals living in Irbid/Mafraq or Amman who have encountered palliative care first hand, likely through the witnessing of palliative or supportive care provided to a loved one. We do not rule out the minimal possibility of talking with community members who themselves have received palliative care. Community members we might interview include people in conditions of political, social and economic instability or destitution, and people displaced from their homes and communities. Some of the people receiving or needing palliative care may have cancer, others may have other chronic conditions that are not able to be treated any further.

We are including people of all ages which means that families with children, young adults or older adults receiving or needing palliative care may be included. While we are not focusing on children, we are not excluding the possibility of talking to child-head-of-households. We are limiting inclusion languages to English, French, Spanish, and Arabic.

Sample size (from population described above):

1. 4-5 expatriate healthcare professionals (HCPs),
2. 4-5 national HCPs,
3. 8-10 community members (as described above).

 Anticipated benefits and impact:

We anticipate our study will provide the necessary empirical information with which to develop effective and practical ethical practice. We aim to encourage aid organizations to consider integrating palliative care in their programs and how best to do so. The introduction of palliative care training and resources into humanitarian healthcare toolkits can help shift attitudes and expectations, better prepare humanitarian HCPs to meet the clinical needs of the dying, and ease certain kinds of moral distress. Ultimately the goal is to improve end-of-life experiences for patients and HCPs in humanitarian settings.

We will provide updates and summaries in the form of reports and policy briefs in English and French, and where necessary in Arabic, transmitting research findings to authorities in humanitarian agencies and local communities. While not a formal committee, we have stakeholder partners in WHO, MSF, the ICRC, IFRC and Palliative care in Complex Humanitarian Emergencies (PALCHE) a multi-national network, listed within the International Association for Hospice and Palliative Care (IAHPC), all of whom are actively exploring integration of palliative care into humanitarian responses. These already established networks are vital for ensuring the responsiveness of the study, identifying potential participants, and to facilitate uptake. We will rely on our links with PALCHE to help convert our data into meaningful evidence to support SPHERE and WHO handbook revisions and manual development on palliative care in crises.

We will disseminate findings through conferences, public presentations and workshops at humanitarian organization AGMs and training events, and communities of practice on ethics and palliative care in humanitarian contexts, to enable dialogue and exchange between stakeholders and increase involvement of a wider collective of knowledge users of study outputs. Indicators of uptake will be recorded for inclusion in progress and final reports to funding agency.

Funding:

This research project is funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme. The 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.