National Palliative Care Strategy in a Conflict Affected Country: A Jordanian Demonstration Project.

CONTEXT: Palliative care (PC) integration is vital, as endorsed by the World Health Organization. Yet, Jordan, a Middle Eastern country with limited resources, faces ongoing challenges despite efforts to improve palliative and home care. Establishing a national PC strategic framework, with government and stakeholder consensus, is essential for ensuring universal access to high-quality palliative care. However, processes for achieving this, particularly in the Middle East, are underreported. OBJECTIVES: This study delineates the process of developing Jordan's National Palliative and Home Care Strategic Framework, reflecting on its five-year impact. Additionally, it identifies barriers to PC progress in Jordan and offers recommendations to stakeholders. METHODS: We conducted a rapid review and analyzed reports, minutes, meetings, and publications. The sequential framework development involved content and situational analysis, expert review, transparent expert consultation, multistage consensus procedures, and high-level advocacy meetings. RESULTS: The National Palliative and Home Care Strategic Framework encompasses six domains: 1) policy, 2) finance, 3) service delivery, 4) opioid access, 5) capacity building, and 6) information, research, monitoring, and evaluation. Government endorsement in April 2018 ignited national engagement, driving policy, service delivery, workforce development, education, training, and research progress. Nonetheless, workforce shortages, limited opioid access, and inadequate funding persist as barriers. CONCLUSION: Jordan's collaborative development of the inaugural National Palliative and Home Care Strategic Framework, endorsed by the government and stakeholders, provides a comprehensive roadmap for PC advancement. While it promises improved services, effective solutions to workforce and opioid access issues are crucial for successful implementation.

Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study.

Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Methods: A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Findings: Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion: The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.

Providing person-centered palliative care in conflict-affected populations in the Middle East: What matters to patients with advanced cancer and families including refugees?

Introduction: Universal health coverage highlights palliative care as an essential component of health services. However, it is unclear what constitutes person-centered care in populations affected by conflict, as they may have specific concerns in the dimensions of physical, emotional, social, and spiritual wellbeing. This study aimed to identify what matters to patients with advanced cancer and family caregivers in Jordan including refugees, to inform appropriate person-centered assessment and palliative care in conflict-affected populations. Methods: Cross-sectional face-to-face, semi-structured interviews were conducted at two sites in Amman. Adult patients with advanced cancer and family caregivers were purposively sampled to maximize diversity and representation. Interviews were digitally audio recorded, anonymized, and transcribed verbatim for thematic analysis. Findings: Four themes were generated from 50 patients (22 refugees; 28 Jordanians) and 20 caregivers (7 refugees; 13 Jordanians) (1). Information, communication, and decision-making. Truth-telling and full disclosure from clinicians was valued, and participants expressed concerns that information was not shared in case patients would disengage with treatment. (2) Priorities and concerns for care and support. Participants' top priority remained cure and recovery (which was viewed as possible). Other priorities included returning to their "normal" life and their "own" country, and to continue contributing to their family. (3) Role of spirituality and Islam. Most participants had strong faith in God and felt that having faith could comfort them. For refugees whose social network was fractured due to being away from home country, prayer and Quran reading became particularly important. (4) Unmet support needs of family caregivers. Family caregivers were affected physically and emotionally by worrying about and caring for the patients. They needed support and training, but often could not access this. Discussion: Truth-telling is highly valued and essential to achieving person-centered care and informed decision-making. This study also reveals specific concerns in conflict-affected populations, reflecting the experience of prior losses and fracturing of existing social networks and support. The role of religion is crucial in supporting refugee communities, and consideration should be paid to the needs of patients and caregivers when caring for a patient at home without access to their communities of origin and the support they accessed.

Decision-Making Preferences among Advanced Cancer Patients in a Palliative Setting in Jordan.

Understanding patients' decision-making preferences is crucial for enhancing patients' outcomes. The current study aims to identify Jordanian advanced cancer patients' preferred decision-making and to explore the associated variables of the passive decision-making preference. We used a cross-sectional survey design. Patients with advanced cancer referred to the palliative care clinic at a tertiary cancer center were recruited. We measured patients' decision-making preferences using the Control Preference Scale. Patients' satisfaction with decision-making was assessed with the Satisfaction with Decision Scale. Cohen's kappa statistic was used to assess the agreement between decision-control preferences and actual decision-making, and the bivariate analysis with 95% CI and the univariate and multivariate logistic regression were used to examine the association and predictors of the demographical and clinical characteristics of the participants and the participants' decision-control preferences, respectively. A total of 200 patients completed the survey. The patients' median age was 49.8 years, and 115 (57.5%) were female. Of them, 81 (40.5%) preferred passive decision control, and 70 (35%) and 49 (24.5%) preferred shared and active decision control, respectively. Less educated participants, females, and Muslim patients were found to have a statistically significant association with passive decision-control preferences. Univariate logistic regression analysis showed that, being a male (p = 0.003), highly educated (p = 0.018), and a Christian (p = 0.006) were statistically significant correlates of active decision-control preferences. Meanwhile, the multivariate logistic regression analysis showed that being a male or a Christian were the only statistically significant predictors of active participants' decision-control preferences. Around 168 (84%) of participants were satisfied with the way decisions were made, 164 (82%) of patients were satisfied with the actual decisions made, and 143 (71.5%) were satisfied with the shared information. The agreement level between decision-making preferences and actual decision practices was significant (ⱪ coefficient = 0.69; 95% CI = 0.59 to 0.79). The study's results demonstrate that a passive decision-control preference was prominent among patients with advanced cancer in Jordan. Further studies are needed to evaluate decision-control preference for additional variables, such as patients' psychosocial and spiritual factors, communication, and information sharing preferences, throughout the cancer trajectory so as to inform policies and improve practice.

Concerns and priority outcomes for children with advanced cancer and their families in the Middle East: A cross-national qualitative study.

Introduction: Palliative care access is limited in the Middle-East, with few specialist centers and forcibly displaced migrants facing additional struggles to access care. Little is known about the specificities of providing palliative care to children and young people (CYP) with cancer. They are rarely asked directly their concerns and needs, which limits the provision of quality patient-centered care. Our study aims to identify the concerns and needs of CYP with advanced cancer and their families, in Jordan and Turkey. Method: A qualitative cross-national study in Jordan and Turkey with framework analysis was conducted two pediatric cancer centers in Jordan and Turkey. In each country, 25 CYP, 15 caregivers and 12 healthcare professionals participated (N=104). Most caregivers (70%) and healthcare professionals (75%) were women. Results: We identified five areas of concern: (1) Physical pain and other symptoms (e.g. mobility, fatigue); (2) Psychological concerns and needs (e.g. anger, psychological changes); (3) Spirituality, uncertainty over the future and use of "Tawakkul" (e.g. use of religion as a coping mechanism); (4) Negative impact on social life (e.g. social isolation, loss of support); (5) Burden on caregiver and their families (e.g. financial issues, siblings left behind). Psychological concerns were a priority for both CYPs and caregivers (particularly for refugee and displaced families) but often overlooked during routine care. CYP were able to share their own concerns and care priorities. Conclusions: Advanced cancer care must ensure assessment and management of concerns across the concerns identified. Developing child- and family-centered outcomes would ensure monitoring the quality of care. Spirituality had a more important role compared to similar investigation in other regions.

Validation of the Arabic Version of the Edmonton Symptom Assessment System.

Quality cancer care is a team effort. In addition, patients' symptoms change over the course of treatment. As such, the Edmonton Symptom Assessment System (ESAS) is a simple tool designed to quickly monitor symptom change. Here, we present the results from a two-phase study aimed at validating the Arabic version of the ESAS (ESAS-A). Phase one involved the creation of two versions of the ESAS with both reverse and forward translations by bilingual, native Arabic speakers as well as evaluation by an expert panel. The reconciled version was then administered to 20 patients as a pilot from which to create the final version, which was then used with 244 patients. Phase two for the ESAS-involved an ESAS-based validation of 244 adults aged 18 years and older who were diagnosed with advanced cancer; then, further validation was completed in conjunction with two other symptom survey tools, the EORTC-Pal 15 and the HADS. The ESAS-A items possessed good internal consistency with an average Cronbach's alpha of 0.84, ranging from 0.82 to 0.85. Moreover, the results of ESAS-A showed good agreement with those of EORTC QLQ- 15 PAL (r = 0.36 to 0.69) and HADS (r = 0.60 and 0.57) regarding anxiety and depression. We found the ESAS-A to be responsive to symptom change and a median time to completion of 3.73 min. The results of our study demonstrate that the ESAS-A is a reliable, valid, and feasible tool for the purposes of monitoring symptom change over the course of cancer treatment.

Stress, resilience, and moral distress among health care providers in oncology during the COVID-19 pandemic.

Background: The coronavirus pandemic has potential implications for stress levels and resilience among oncology healthcare professionals (HCPs). This study aims to assess perceived stress, resilience, and moral distress levels among oncology HCPs in Jordan during the pandemic and identify associated risk factors. Methods: An online cross-sectional survey was conducted among oncology HCPs in Jordan using three validated tools: Perceived Stress Scale (PSS), Connor-Davidson Resilience Scale (CD-RSIC), and Moral Distress Thermometer (MDT). Seven items were used to assess sources of stress. Results: A total of 965 participants enrolled with a 74% response rate. The participants' ages ranged from 20 to 74 (mean = 32.74, SD = 5.197), with 79.1% males, 45.1% were physicians, 32.6% were public hospital workers, 57.1% were married, and 56.6% had children below 18 years. Findings indicated moderate perceived stress (Mean = 15.87, SD = 5.861), low resilience (Mean = 29.18, SD = 5.197), and high moral distress (Mean = 4.72, SD = 2.564). Females, unmarried individuals, and younger age groups exhibited higher PSS (p = 0.009, p < 0.001, and P<0.001) and lower resilience (p = 0.024, p = 0.034, and p = 0.001). Not having children below 18 years correlated with higher perceived stress (P < 0.001). In linear regression analysis, age and gender emerged as significant predictors of both perceived stress and resilience. Female participants reported stress related to the risk of contracting COVID-19 (p = 0.001), transmitting it to others (p = 0.017), social isolation (P < 0.001), and having children at home due to school closures (p = 0.000). A cohort of 239 participants repeated the survey within a two-month interval, revealed a statistically significant decrease in the CD-RISC scores (p < 0.001). Conclusion: Oncology HCPs in Jordan experienced moderate stress, high moral distress, and poor resilience during the COVID-19 pandemic. These factors may negatively affect the quality of oncology care. Urgent measures are necessary to support HCPs in coping with unforeseen circumstances in the future.

Care Needs and Symptoms Burden of Breast Cancer Patients in Jordan: A Cross-Sectional Study.

Breast cancer is the most common malignancy in Jordan. Rigorous needs assessment for breast cancer patients can prioritize both cancer care and palliative care to propose the appropriate services effectively. We conducted a cross-sectional study of breast cancer patients in a cancer center in Jordan. We assessed symptom burden, comorbidities, and performance using the Edmonton Symptom Assessment System (ESAS), the Charlson Comorbidity Index (CCI), and the Australia-modified Karnofsky performance scale (AKPS). Descriptive analysis and regression models to predict the highest symptom burden were used. A total of 233 participants were enrolled: curative vs. palliative intent groups (147 (63%) vs. 86 (37%) patients), respectively. Tiredness was the most reported symptom in 189 patients (81%), while nausea was the least in 61 patients (26.2%). A relationship between the AKPS score and total ESAS was seen (correlation coefficient of -0.487; p < 0.0001). The prevalence of anxiety (p = 0.014), lack of appetite (p = 0.002), poor well-being (p < 0.001), and sleep disorder (p = 0.035) was higher in the palliative care intent group than in the curative one. We identified unmet needs in breast cancer patients. Both groups showed a prevalence of distressing symptoms suggesting that even those with non-palliative intent have high needs and should receive integrated palliative care.