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.

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.

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.

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.