Compounded trauma: A qualitative study of the challenges for refugees living with advanced cancer

Background: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. Aim: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. Design: A qualitative study using semi-structured interviews. Setting/participants: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. Results: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment. Conclusions: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.

• • Evidence reveals a scarcity of data on palliative care needs and interventions provided in crises, challenges of care provision particularly due to inadequate pain relief resources and guidelines, a lack of consensus on the ethics of providing or limiting palliative care as part of humanitarian healthcare response, and the importance of contextually appropriate care.
What this paper adds?
• • Refugees with advanced cancer and caregivers often experienced unmet psychosocial needs, and lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. • • Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. • • Many refugees have experienced trauma related to war that may affect their physical and mental health, and they faced serious financial crises caused by the rising cost of medicines and treatment.

Implications for practice, theory or policy
• • This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. • • The data reveal challenges in obtaining social support in the community and emphasise the need to better understand homecare needs and models for this population. • • Effective communication and interactions between staff and patients and their families and appropriate psychosocial services must be considered essential components of palliative care to address the unmet needs of this vulnerable group.

Introduction
Jordan hosts the second-greatest refugee to citizen ratio of any country in the world. 1,2 In 2018 there were 2,175,491 refugees from Palestine, 661,859 from Syria and 66,262 from Iraq displaced to Jordan. 3 The United Nations Relief and Works Agency (UNRWA) reports a significant number of Palestinians in Jordan who are not registered and are therefore considered to be 'displaced persons' rather than refugees. Syrian refugees alone account for 10% of Jordan's population, and the majority of these live outside refugee camps in Jordanian communities, 4 placing considerable strain on access to basic services. 5 Refugees, as a minority group in any given society, experience many stressful and traumatic situations prior to, during, and after transfer, 6 and a high burden of physical, psychological and socioeconomic challenges. Iraqi refugees in Jordan report unemployment (90.0%), poverty (91.4%), anxiety and depression (42.0%), fear and insecurity (8.7%), isolation (6.6%) and high blood pressure and diabetes (32.9%). 7 Syrian refugee families in Jordan report a number of challenges and consequences that are legal (service access rights) and civil (documentation of birth, marriage and death registration). 8 Understanding the experiences of displacement, humanitarian and protection needs, and access to appropriate solutions (e.g. healthcare, education and shelter) among refugees is important but has not received sufficient attention. 9 In Jordan, although the United Nations High Commissioner for Refugees (UNHCR) and its health partners offer some health services to registered asylum seekers and refugees, only Syrians and Iraqis benefit from subsidies at government facilities. All others are required to pay elevated foreigner rates at Ministry of Health facilities, which prevents many from accessing essential services for urgent and severe problems. 9,10 Projections using the World Health Organisation (WHO) mortality data in upper middle-income countries (such as Jordan) suggest an 88% increase between 2016 and 2060 in people facing serious health-related suffering at the end of life. 11 The greatest increase will be in cancer for these countries (96%), and cancer is currently the second leading cause of death in Jordan (15%). 12 Cancer care for refugees in Jordan bears an estimated annual cost of 2.09 million euros. 13 Refugees and immigrants have poorer access to cancer care than other residents of the Middle East. 14 Palliative care is an essential component of any humanitarian response, however, there is limited evidence about the needs and experiences of palliative care and symptom relief among refugees with advanced illness and their caregivers. A cross-sectional study 15 of refugees with serious health problems (such as significant physical disabilities, treatment-resistant tuberculosis, cancer, HIV infection) and caregivers living in Rohingya refugee camps in Bangladesh highlighted that many refugees with serious health problems experienced significant physical, emotional and social suffering due to a lack of access to pain and symptom management and other essential component of palliative care. Caregivers reported an average of 13.8 h of care per day and suffered sleep difficulties, lack of appetite and lack of pleasure in life in relation to their caregiving role. It is recommended that humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers including refugees.
Palliative care supporting people with serious illness or those nearing death have been excluded in humanitarian emergency and crisis response until recently. 16 A systematic review of the literature on palliative care in humanitarian crises revealed a scarcity of data on palliative care needs and interventions provided in crises, challenges of care provision particularly due to inadequate pain relief resources and guidelines, a lack of consensus on the ethics of providing or limiting palliative care as part of humanitarian healthcare response, and the importance of contextually appropriate care. 17 More research and open discussion on palliative care in humanitarian crises are needed.
Palliative care is not routinely available across Jordan. 12,18 Given the unique challenges of refugees, particularly those living with advanced cancer, and the scant research attention to date in this field, this study aimed to identify the specific experiences and palliative care needs of refugees in Jordan with advanced cancer and their informal caregivers.

Design
This was a qualitative cross-sectional study which used semi-structured interviews and thematic analysis, and is reported in accordance with the consolidated criteria for reporting qualitative research (COREQ) guidelines. 19

Setting and participants
The study was conducted in two sites in Amman, Jordan: King Hussein Cancer Center (KHCC) and Al Bashir Hospital. KHCC provides comprehensive cancer care for about 60% of cancer cases in Jordan, and patients from several Arab nationalities. Its palliative care unit provides inpatient, outpatient and home-based care. Al Bashir Hospital is a public hospital governed by the Ministry of Health and provides supportive care. The supportive care in the oncology service at Al Bashir Hospital offers inpatient and outpatient pain and symptom management to cancer patients, in the form of consultation service. However, the limited staff and resources pose a challenge to identifying and addressing comprehensive palliative needs of patients. 20 Adult refugees (⩾18 years) with advanced cancer receiving care from the study sites and informal caregivers were eligible to participate in this study. Informal caregivers are defined as 'unpaid, informal providers of one or more physical, social, practical and emotional tasks. In terms of their relationship to the patient, they may be a friend, partner, ex-partner, sibling, parent, child or other blood or nonblood relative.' 21 We excluded those with severe physical or psychological problems considered by clinicians too ill to be approached, and those unable to communicate in Arabic or English. Participants were sampled purposively to achieve heterogeneity in age, gender, country of origin and patient's primary diagnosis. Caregivers were recruited independently of the patients and interviewed separately.
All clinicians who were treating patients during the study period at the two sites (i.e. oncologists, palliative care doctors and nurses) received the specific training including the eligibility criteria, and how to assess and identify potential participants. Eligible patients including both inpatients and outpatients were identified and provided with information sheets by treating clinician. Those interested in participation were approached by dedicated research staff who provided further details and answered any questions. The outpatients were approached while waiting for, or after, their consultation with treating clinician. Home care patients were not approached and included in this study. Caregivers were approached and consent sought similarly. All potential participants were given 24 h or longer to consider if wished. Those who decided to participate gave written consent (or an ink thumb print if unable to write through disability, weakness or illiteracy). The information sheets and consent forms were translated into Arabic using forward/backward translation to ensure consistency.

Data collection
Face-to-face, semi-structured in-depth interviews were conducted by research staff from KHCC in the participants' preferred settings between 1st October 2018 and 31st May 2019. The interviewers (SA, WA and LA) had extensive experience in palliative care and qualitative research. However, no relationship existed at the time of consenting and interviewing participants. A topic guide was developed from a review of evidence on experiences of displaced persons in Jordan, 7-10 palliative care needs in humanitarian emergency and crisis settings, 16,17 and refined by the wider cross-national research team.
The patient participants' topic guides addressed (1) the experiences of living with terminal illness, facing end of life and family support; (2) personal priorities, needs and concerns, (3) distress and challenges as refugees and coping strategies; (4) palliative care needs and experiences of refugees with advanced cancer (e.g. family needs, religious/spiritual needs, trauma and displaced experience, preferences for advance planning, decision making and communication); (5) what would make care more patient-centred, and how should that be delivered.
Caregivers were also asked about their own needs/concerns and how they were met, experiences of caring for someone with advanced cancer and views towards quality of care. Data collection continued until data saturation was reached (i.e. no new themes were identified in line with the study aim). All interviews were conducted in Arabic and digitally audio recorded, anonymised, transcribed verbatim by a Research Assistant (GA), and translated into English by another Research Assistant (AA) in Amman, Jordan. The transcriber and translator were not involved in data collection. Field notes were made during each interview.

Data analysis
Data were jointly coded by the researcher in the UK (PG) and Jordan (SA), and analysed using inductive thematic analysis in QSR NVivo 10. The two authors independently examined seven transcripts to develop a coding framework and applied the coding framework to the analysis of the remaining transcripts. Transcribing, translating, and analysing the data occurred simultaneously as the data collection proceeded to refine the topic guide. Interview data were categorised and compared enabling identification of common themes and sub-themes in the dataset. A list of themes and sub-themes were created, then examined for overlapping themes merged under descriptive labels and themes containing few quotations. Throughout this process, the data were consistently analysed to gain insight into relationship between themes.
Emerging themes were discussed between researchers to improve confirmability and dependability of the findings. The findings were interpreted within the context of the existing literature. The COREQ guidelines were used throughout the study design, data collection and analysis process to enhance trustworthiness and methodological rigor.

Project management
The research team maintained integrity, patient privacy and confidentiality of data throughout the study. The Project Steering Committee members from both the UK and Jordan met on a regular basis to monitor recruitment, review the detailed progress of the study and make recommendations for the overall direction and strategy of the study.

Sample characteristics
Interviews were conducted with 29 refugees (22 patients with advanced cancer, 7 caregivers) ( Table 1). Interviews varied from 12 to 97 min (Mean = 58 min). Patients had an average age of 55 years (range = 26-75), with five different countries of origin (Syria, Iraq, Libya, Yemen, Palestine). Caregivers were not related to any of the patients in this study.
Four themes were generated: psychological distress and sustaining social support, knowledge and uncertainty, family anxiety and support roles and compounded trauma and poverty.

Psychological distress and sustaining social support
Psychosocial needs and support. Majority of patients feel frustrated, upset and desperate when they heard they had cancer, and were additionally distressed by having to stay in a Jordanian hospital. Being far away from their home country, family and social networks meant they could not provide what their children or other family members need because of the disease. However, they tried to hide their feelings to avoid hurting their loved ones. A few caregivers also noticed that the patient stayed away and did not express their feelings and saw a key task to be maintaining patient morale. Even though most participants believed that clinicians should care for all aspects of the patient's health (physical, psychological, social and religious aspects), appropriate psychological and social support was reported either absent or limited. Family caregivers identified clinical teams as being potentially well-positioned to provide emotional support.
"Maybe she (the patient) would listen to him (healthcare staff) more than she listens to us. We're her children, so she might think we don't know these stuff, but if someone specialised in therapy or spiritual counselling, she could listen to him better." (Caregiver age 31, female, Yemeni, daughter caring for her mother -CKH0008) However, some participants questioned the clinical role, reporting that psychosocial-spiritual support is 'outside of the doctor specialty' (CAL0017, son caring for his father). They felt that the healthcare staff 'just care about the disease and don't care about other aspects of care' (PAL0009; PAL0039). One patient said, 'I don't blame them, they are very loaded with work, they treat me well but they can only handle that much' (PAL0037).
Spiritual care. Majority patients had strong faith in God and believed that everything is planned by God, that they should fulfil their duties towards God, pray and leave things to God.

Knowledge and uncertainty
Most patients explained that healthcare providers and family tended not to discuss diagnosis, prognosis and care plan with them, which caused significant distress due to uncertainty. A minority would prefer not to be given full information to keep positive feelings, especially in relation to prognosis. However, they acknowledged the benefit of having complete information.

Compounded trauma and poverty
The war in the home country of the patients made their cancer treatment unavailable in their home country. Many refugees applied for financial assistance from the UNHCR but faced serious financial crises when their applications were rejected. They could not afford expensive medications, imaging, treatment and even living costs. The rising cost of medicines and treatment raised concerns regarding high financial burdens. People lost their jobs due to their disease and treatment and described their financial situation in Jordan is not just rough but very rough (PAL0006). They tried to apply for Jordan Health Aid Society (JHAS) four or five times and there was no success or a long waiting time for the approval to get through. They often called their relatives for help. Their financial status played an important role in not only treatment, but also affected their ability to travel, pay rent, buy food, all of that. They experienced symptoms and discomfort from their disease and at the same time, catastrophic financial difficulties because of healthcare payment, which made them feel struck by lightning. As some patients described,

Main findings
This study highlights the impact of fractured families and social networks, and compounded trauma on refugees with advanced cancer and caregivers in Jordan. Effective communication and interactions with the patients and families about their treatment and care plan and appropriate psychosocial services have been identified by the participants as essential in their care but these aspects of care are often neglected. Financial difficulties have become a major concern of both the patients and caregivers. It is crucial to early identify and address the unique multidimensional needs of refugees with advanced disease and their family caregivers, particularly psychosocial and spiritual needs. The assessment tools have been used routinely at KHCC to expand the capacity of the clinicians to assess the needs of the patients including the Edmonton Symptom Assessment System (ESAS) 22 for all encounters in palliative care and Distress Thermometer 23 for all patients admitted to the Center. Currently, an initiative is underway to adapt, validate and implement the Integrated Palliative care Outcome Scale (IPOS) 24 to reflect the specific concerns of refugees at KHCC and Al Bashir Hospital. The brief assessment tool -IPOS can help to not only identify symptoms, but also extend to capture communication and information needs, practical concerns, anxiety or low mood, family anxieties and overall feeling of being at peace. These demonstration centres will drive improvement in assessment and care of patients and families (including refugees) with palliative care needs. This work will be published separately.
Compounded trauma in refugees' lives has been considered as a consequence of multiple historical, social and political constraints which are embedded in their personal experiences as refugees. 25 This is echoed by the findings of our study which emphasised the importance of having a holistic understanding of the multidimensional needs unique to refugees. Our participants described a number of specific traumas, that is, forced to flee their home countries to escape serious human rights abuses and prolonged physical and emotional distress (e.g. exposure to wars and conflicts, ongoing physical, sexual and psychological oppression). Seeking a place of safety took them away from their family and social support network, which they would usually have drawn on to cope with the anxiety and stress of their cancer. When developing and evaluating complex interventions for this particular group of refugees with advanced cancer, the healthcare providers should take a person-centred approach to respecting the diverse beliefs, values and unique experiences and multidimensional needs of refugees. Person-centred care shifts away from healthcare providers deciding what is best for a patient to putting people at the centre of care and taking into account their values, preferences and needs, as an expert of their own experience. The person and their family become equal partners not only in the planning of their own care and support, but also in the design and delivery of services. This approach can improve both the experience and quality of care by ensuring people to receive holistic assessment and care, have access to appropriate care when and where they need it, and get all the information they need in a way that is accessible for them to make informed decisions for their care and support. For example, when treating and caring for Muslim refugees with advanced illness, their religious beliefs and preferences at end of life must be reflected. 26 Policy makers and health providers in Jordan have experienced enormous challenges due to the lack of quality cancer prevalence data to inform innovative interventions and care delivery for the refugee population, and insufficient health resource allocation to support services. A qualitative interview study conducted with health officials and healthcare workers from the Jordanian Ministry of Health, multilateral donors and international non-governmental organisations identified key barriers such as 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. 27 Although health care coverage of refugees varies by host country, the UNHCR is the major payer. The UNHCR does not cover the expenses of many chronic diseases such as end-stage renal disease. 28 In 2013, an interagency report documented a rise in the number of Syrian refugees presenting with cancer to Jordanian health clinics, of which many were children with leukaemia. Acknowledging that the cost of treatment exceeded UNHCR's referral budget at that time, the agency looked to the specialist KHCC in Amman Jordan, and its goodwill fund, for assistance. 29 Now is time to support the health professional training and provision of holistic palliative care interventions in humanitarian emergencies. 30,31 Pinheiro and Jaff conducted a qualitative interview study with 21 Syrian refugees in Jordan with life-limiting conditions such as cancer, diabetes, chronic disability and renal failure and four caregivers caring for refugee children with similar conditions. 32 This study identified the gaps and challenges of addressing the health needs of Syrian refugees with lifelimiting conditions in Jordan and found that patients in refugee camps and communities would benefit from receiving palliative care services that are often either unavailable or inaccessible. Given that most Syrian refugees live outside of camps, they emphasise the need to improve national systems that will benefit all persons, by increasing national capacities to provide palliative care integrated into the existing health system in Jordan and available to everyone including nationals and refugees alike. The key findings from our study are consistent with the palliative care needs from previous studies. 15,32 However, our study further explored the impact of fractured families and social networks, and compounded trauma on refugees with advanced cancer and caregivers in Jordan.
Much of the research on refugees has focused on their movement from non-Western countries to Western countries where immigration policies have been developed, such as the US, Canada and Australia. 7 Middle Eastern countries such as Jordan are also coping with the arrival of a large number of refugees from neighbouring countries and managing the ensuing protection efforts. This global refugee situation poses a challenge to the knowledge base and skills required by health care providers to respond to the needs of individuals and to address the broader humanitarian and political issues.

Strengths and limitations
To our knowledge, this is the first qualitative study to gather the first-hand information about the real experiences and needs of refugees with advanced cancer and family caregivers in Jordan. However, this study was limited by a small sample of family caregivers (n = 7). More caregivers may have resulted in greater diversity and different responses to the topic guide. In addition, there were significantly larger groups of patients with breast cancer (n = 9) and those from Syria (n = 11) interviewed than the other groups, which has limited the ability to explore and compare the perspectives from different groups.

Implications
Universal Health Coverage states palliative care as an essential health service. 33 In the WHO Global Action Plan for the Prevention and Control of Non-communicable Diseases 2013−2020, 34 palliative care is explicitly recognised as part of the comprehensive services required for the non-communicable diseases. Palliative care and pain relief are among the most neglected dimensions of global health. Addressing the specific concerns of refugee populations with advanced cancer may achieve the goals of The Lancet Commission on Palliative Care and Pain Relief to alleviate the burden of pain, suffering and severe distress associated with life-threatening or life-limiting conditions. 35 The capacity to meet the cancer and palliative care needs of refugees is limited. Capacity building and training would be the first step to improve cancer and palliative care for this vulnerable and neglected population in Jordan. Nurses from oncology departments in Jordan have described the working environment is highly stressful and demanding and they faced many challenges in their work, including the lack of authority to inform patients about their disease, nursing staff and supply shortages and a lack of orientation programmes. 36 All these factors affected the psychological status of the nurses which would subsequently influence the quality of care they provided, therefore, should be taken into consideration by stakeholders, managers and organisational leaders.

Conclusion
Referral networks and specialised training for humanitarian teams and health care providers in Jordan on palliative care such as implementing pain management, offering psychosocial support services and addressing emotional, spiritual and psychological conditions could ameliorate many of the problems faced by this vulnerable group. Community-based palliative care services should be enhanced in Jordan to meet the needs of this refugee population. Further research is required to explore the understanding of true experiences and needs of refugees with advanced cancer from healthcare providers' perspectives and to compare the experiences of refugees with advanced cancer and their family caregivers from different social and cultural backgrounds.