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.

International validation of two EORTC questionnaires for assessment of health-related quality of life for patients with high-grade non-Hodgkin lymphoma (QLQ-NHL-HG29) and low-grade non-Hodgkin lymphoma (QLQ-NHL-LG20).

BACKGROUND: Health-related quality of life (HRQOL) is a critical aspect to consider when making treatment decisions for patients with non-Hodgkin-lymphoma (NHL). This international study by the European Organisation for Research and Treatment of Cancer (EORTC) tested the psychometric properties of two newly developed measures for patients with high-grade (HG)- and low-grade (LG)-NHL: the EORTC QLQ-NHL-HG29 and the EORTC QLQ-NHL-LG20 to supplement the core questionnaire (EORTC QLQ-C30). METHODS: Overall, 768 patients with HG-NHL (N = 423) and LG-NHL (N = 345) from 12 countries completed the QLQ-C30, QLQ-NHL-HG29/QLQ-NHL-LG20 and a debriefing questionnaire at baseline, and a subset at follow-up for either retest (N = 125/124) or responsiveness to change (RCA; N = 98/49). RESULTS: Confirmatory factor analysis showed an acceptable to good fit of the 29 items of the QLQ-NHL-HG29 on its five scales (symptom burden [SB], neuropathy, physical condition/fatigue [PF], emotional impact [EI], and worries about health/functioning [WH]), and of the 20 items of the QLQ-NHL-LG20 on its four scales (SB, PF, EI, and WH). Completion took on average 10 minutes. Test-retest reliability, convergent validity, known-group comparisons, and RCA find satisfactory results of both measures. A total of 31%-78% of patients with HG-NHL and 22%-73% of patients with LG-NHL reported symptoms and/or worries (e.g., tingling in hands/feet, lack of energy, and worries about recurrence). Patients reporting symptoms/worries had substantially lower HRQOL compared to those without. DISCUSSION: The use of the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20 questionnaires in clinical research and practice will provide clinically relevant data to better inform treatment decision-making. PLAIN LANGUAGE SUMMARY: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group developed two questionnaires. These questionnaires measure health-related quality of life. The questionnaires are for patients with high-grade or low-grade non-Hodgkin lymphoma. They are called the EORTC QLQ-NHL-HG29 and QLQ-NHL-LG20. The questionnaires are now internationally validated. This study demonstrates that the questionnaires are reliably and valid, which are important aspects of a questionnaire. The questionnaires can now be used in clinical trials and practice. With the information gathered from the questionnaires, patients and clinicians can better evaluate treatments and discuss the best choice for a patient.

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.

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.

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.

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.

Developing a global practice-based framework of person-centred care from primary data: a cross-national qualitative study with patients, caregivers and healthcare professionals.

INTRODUCTION: Person-centred care (PCC) is internationally recognised as a critical component of high-quality healthcare. However, PCC evolved in a few high-income countries and there are limited data exploring this concept across the vast majority of countries which are low- and middle-income. This study aimed to appraise and adapt a PCC model across three serious physical conditions in three middle-income countries and generate an evidence-based framework and recommendations for globally relevant PCC. METHODS: Cross-national, cross-sectional qualitative study. In depth, semistructured interviews conducted with: advanced cancer patients in Jordan (n=50), their caregivers (n=20) and healthcare professionals (HCPs) (n=20); chronic obstructive pulmonary disease patients in South Africa (n=22), their caregivers (n=19) and HCPs (n=22); heart failure patients in Thailand (n=14), their caregivers (n=10) and HCPs (n=12). Data were analysed using framework analysis. Santana et al's PCC model (2018) and Giusti et al's systematic review (2020) were used to construct an a priori coding frame for deductive analysis, with additional inductive coding for coding that did not fit the frame. RESULTS: The findings both reveal specific practical actions that contribute towards delivering PCC and highlight new cross-national domains of person-centredness: interdependency and collectivism; bringing care into the home and community; equity and non-discrimination; addressing health and illness within the context of limited resources; and workforce well-being. CONCLUSION: The data suggest that PCC requires particular structural features of the healthcare system to be in place, such as professional education in PCC values and partnerships with community-based workers. These structures may better enable PCC processes, including tailored information sharing and providing genuine opportunities for patients to do the things that matter to them, such as making informed care decisions and sustaining social relationships. PCC must also accommodate a collectivist perspective and support the well-being of the workforce.

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.