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.

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.

Palliative Care in 2020 & Beyond Workshop: an expert symposium to develop palliative care advocacy in Turkey.

BACKGROUND: In 2014, the World Health Assembly called for improved access to palliative care (PC) as a core component of healthcare systems. Still, in 2019 the development of PC activism in Turkey was patchy in scope, care provision is isolated and services are limited in relation to population size. This workshop was aimed to increase understanding of the PC approach in cancer and to discuss holistic strategies for implementing PC for cancer in Turkey. METHODS: The workshop hosted in February 2020 at Ankara was attended by 80 healthcare professionals, bureaucrats, and international PC experts. Panel discussions were held to determine the current status, shortcomings and specify solutions for future PC in cancer in Turkey. RESULTS: Positive developments in PC after 2010 were acknowledged. Yet PC services are insufficient and mostly unavailable in the less developed regions. PC centers embedded in oncology hospitals were run by oncologists and follows classical cancer treatment protocol. It has emerged that the future need for specialized pc will be greater than anticipated. The latest regulations and the National Pallia-Turk project will provide a framework to develop nationwide PC activism. The barriers are; limited training, lack of integration into cancer care, public ignorance, and legislative issues to Do-Not-Resuscitate (DNR) orders. The contextual suggestions are; all healthcare workers must acquire a minimum knowledge and skills of PC. Home-based PC should be timely and responsive, coordination among patient's care stakeholders, Hospital-based PC for intensive symptom control or reduce caregiver burden. simultaneous cancer and PC to avoid late referral, legal arrangements for advance directives and DNR orders, and public awareness via mass media initiatives. SIGNIFICANCE OF RESULTS: The workshop recommendation substantially contributes to the existence of PC policy and guidelines; will be useful for the development of comprehensive PC activism to address the future need of PC in Turkey.

Progress in palliative care for cancer in Turkey: a review of the literature.

BACKGROUND: The demographic transition in Turkey is shifting the burden of diseases towards non-communicable diseases including cancer. Palliative care (PC) as a component of Universal Health Coverage assures patient and family-centred care provision throughout the spectrum of cancer. OBJECTIVES: This study aimed to make a detailed evaluation of the progress achieved since the mid-90s and the current situation of cancer PC in Turkey. METHODS: A literature review was conducted in PubMed, Scopus, Embase, ScienceDirect, Web of Science, Google Scholar, The Turkish Academic Network and Information Centre databases, Ministry of Health documents, Council of Higher Education's thesis 01/1995 to 07/2020. The information was categorised into the six domains: history of the cancer PC; law and regulations; education and research; opioid use; patient care and palliative centres; public awareness, psychosocial support and end of life ethics. RESULTS: Of 27,489 studies, 331 met the inclusion criteria. The majority were published in the Turkish language and were journal articles. The findings showed that the development of PC in Turkey can be divided into three stages: early initiatives before 2000, the dissemination stage, 2000-2010 and the advanced stage after 2010. There is evidence of progress in terms of legal regulations, opioid use and number of PC services and research output. However, there is still a need for improvement in professional education, public awareness and end of life care. CONCLUSION: There is evidence of progress, barriers and opportunities. However, bringing research into practice is needed for scale-up and integration of PC in cancer care in Turkey.

The effects of parental attitudes and mothers' psychological well-being on the emotional and behavioral problems of their preschool children.

The aim of the present study was to examine the association between emotional and behavioral problems in preschool children and maternal attitudes. The predictor variables were parental attitudes, maternal depression and anxiety symptoms. Our sample consisted of the mothers of 204 preschool children attending different preschools in Ankara, Turkey. Mothers were asked to complete the parental attitude research instrument, the beck depression inventory, the trait anxiety inventory, and the child-behavior checklist. Hierarchical regression analysis revealed that when considered jointly, maternal anxiety but not maternal depression explained variability in preschool children internalizing and externalizing their problems. Mothers rejecting attitudes towards family life and child-raising styles were also found to be closely associated with the emotional and behavioral problems in their children. The findings demonstrate that the importance of maternal anxiety is above and beyond the importance of rejecting the maternal role when it comes to preschool problems in children.

International comparisons of behavioral and emotional problems in preschool children: parents' reports from 24 societies.

International comparisons were conducted of preschool children's behavioral and emotional problems as reported on the Child Behavior Checklist for Ages 1½-5 by parents in 24 societies (N = 19,850). Item ratings were aggregated into scores on syndromes; Diagnostic and Statistical Manual of Mental Disorders-oriented scales; a Stress Problems scale; and Internalizing, Externalizing, and Total Problems scales. Effect sizes for scale score differences among the 24 societies ranged from small to medium (3-12%). Although societies differed greatly in language, culture, and other characteristics, Total Problems scores for 18 of the 24 societies were within 7.1 points of the omnicultural mean of 33.3 (on a scale of 0-198). Gender and age differences, as well as gender and age interactions with society, were all very small (effect sizes < 1%). Across all pairs of societies, correlations between mean item ratings averaged .78, and correlations between internal consistency alphas for the scales averaged .92, indicating that the rank orders of mean item ratings and internal consistencies of scales were very similar across diverse societies.