Aid when 'there is nothing left to offer': Experiences of palliative care and palliative care needs in humanitarian crises.

Access to palliative care, and more specifically the alleviation of avoidable physical and psychosocial suffering is increasingly recognized as a necessary component of humanitarian response. Palliative approaches to care can meet the needs of patients for whom curative treatment may not be the aim, not just at the very end of life but alleviation of suffering more broadly. In the past several years many organizations and sectoral initiatives have taken steps to develop guidance and policies to support integration of palliative care. However, it is still regarded by many as unfeasible or aspirational in crisis contexts; particularly where care for persons with life threatening conditions or injuries is logistically, legally, and ethically challenging. This article presents a synthesis of findings from five qualitative sub-studies within a research program on palliative care provision in humanitarian crises that sought to better understand the ethical and practical dimensions of humanitarian organizations integrating palliative care into emergency responses. Our multi-disciplinary, multi-national team held 98 in-depth semi-structured interviews with people with experiences in natural disasters, refugee camps in Rwanda and Jordan, and in Ebola Treatment Centers in Guinea. Participants included patients, family members, health care workers, and other staff of humanitarian agencies. We identified four themes from descriptions of the struggles and successes of applying palliative care in humanitarian settings: justification and integration of palliative care into humanitarian response, contextualizing palliative care approaches to crisis settings, the importance of being attentive to the 'situatedness of dying', and the need for retaining a holistic approach to care. We discuss these findings in relation to the ideals embraced in palliative care and corresponding humanitarian values, concluding that palliative care in humanitarian response is essential for responding to avoidable pain and suffering in humanitarian settings.

Assessment of physical activity and its facilitators and barriers among Syrian refugees living in Amman City, Jordan: a cross-sectional study.

BACKGROUND: Physical inactivity is one of the major risk factors for non-communicable diseases. Few studies about physical activity have been conducted among refugees from neighbouring countries. Given changes in the situation of Syrians, assessment of physical activity among Syrian refugees is required to understand their situation. This study aimed to evaluate the degree of self-reported physical activity and to identify perceived facilitators of and barriers to physical activity among Syrian refugees living in Amman, Jordan, in 2017. METHODS: This community-based cross-sectional study was conducted using a structured questionnaire and the short form of the International Physical Activity Questionnaire. Participants were eligible for the study if they were Syrian refugees aged 18-64 years, living in Amman city, and were either registered with the United Nations High Commissioner for Refugees, waiting for their registration, or had a service card issued by the Jordanian Ministry of Interior. The relationship between physical activity level and sex was assessed using the chi-square test and Cochran-Armitage tests. The Mann-Whitney U test was performed to assess the relationship between the median metabolic equivalent scores of physical activity and gender. Backward stepwise logistic regression analysis was used to analyse the association between predictors of physical inactivity and physical activity level. RESULTS: Among the 173 participants, the majority (91.9%) reported moderate to a high level of physical activity, and 8.1% were physically inactive. The metabolic equivalent scores for the walking activity of males (median: 1039.5, IQR: 0, 2772) was significantly higher than that of females (median: 396, IQR: 0, 1188) (p < 0.01). "Perceived change in the amount of physical activity" was a significant predictor of physical inactivity (adjusted OR = 3.00; 95%CI: 1.27-7.26). Common facilitators of physical activity were "psychological wellbeing"(49.7%) and "prevent diseases"(46.8%). The greatest barriers to physical activity were "time limitation"(43.4%) and "high cost"(57.8%). CONCLUSION: This study revealed the physical activity level among Syrian refugees in Amman. The perceived facilitators and barriers to physical activity identified among Syrian refugees were similar to those in previous studies conducted among non-refugees. These results provide a valuable baseline for future examinations of physical activity level and to verify its possible facilitators and barriers.

A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda.

BACKGROUND: This case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study's main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational research partnerships, which is the focus of this case analysis. DISCUSSION: There exist ongoing challenges for international collaborative research in humanitarian conflict-induced settings. Research partnerships were crucial for connecting with key stakeholders associated with the full study (e.g., refugees with life limiting illness, local healthcare providers, aid organization representatives). While important relationships were established, obstacles limited our abilities to fully attain the type of mutual partnership we aimed for. Unique challenges faced during the research included: (a) building, nurturing and sustaining respectful and equitable research partnerships between collaborators in contexts of cultural difference and global inequality; (b) appropriate ethics review and challenges of responding to local decision-maker's research needs; and (c) equity and fairness towards vulnerable populations. Research strategies were adapted and applied to respond to these challenges with a specific focus on (d) research rewards and restitution. CONCLUSIONS: This case analysis sheds light on the importance of understanding cultural norms in all research roles, building relationships with decision makers, and developing teams that include researchers from within humanitarian crisis settings to ensure that mutually beneficial research outcomes are ethical as well as culturally and contextually relevant.