"If I have a cancer, it is not my fault I am a refugee”: A qualitative study with expert stakeholders on cancer care management for Syrian refugees in Jordan

BACKGROUND: Noncommunicable diseases including cancer are widespread amongst the 5.6 million Syrian refugees currently hosted in the Middle East. Given its prevalence as the third leading cause of death in Syria, cancer is likely to be an important health burden among Syrian refugees. Against this background, our aim was to describe the clinical, ethical and policy decision-making experiences of health actors working within the current refugee cancer care system; the impact of refugee cancer care health policies on health care providers and policy makers in this context; and provide suggestions for the way delivery of care should be optimised in a sustained emergency situation. METHODS: From April-July 2016, we conducted in-depth interviews with 12 purposively sampled health officials and health care workers from the Jordanian Ministry of Health, multilateral donors and international non-governmental organisations. Data were analysed using a framework analysis approach to identify systemic, practical and ethical challenges to optimising care for refugees, through author agreement on issues emerging from the data and those linked more directly to areas of questioning. RESULTS: As has been previously reported, central challenges for policy makers and health providers were the lack of quality cancer prevalence data to inform programming and care delivery for this refugee population, and insufficient health resource allocation to support services. In addition, limited access to international funding for the host country, the absence of long-term funding schemes, and barriers to coordination between institutions and frontline clinicians were seen as key barriers. In this context where economic priorities inevitably drive decision-making on public health policy and individual care provision, frontline healthcare workers and policy makers experienced significant moral distress where duties of care and humanitarian values were often impossible to uphold. CONCLUSIONS: Our findings confirm and expand understanding of the challenges involved in resource allocation decisions for cancer care in refugee populations, and highlight these for the particular situation of long term Syrian refugees in Jordan. The insights offered by frontline clinicians and policy makers in this context reveal the unintended personal and moral impact of resource allocation decisions. With many countries facing similar challenges in the provision of cancer care for refugees, the lessons learned from Jordan suggest key areas for policy revision and international investment in developing cancer care policies for refugees internationally.