Interventions to enhance cross-cultural competence in oncology: A meta-analysis of effectiveness studies and a qualitative review.

PURPOSE: Cross-cultural competence of healthcare providers is crucial to create a culturally safe environment. Cancer poses special challenges to cross-culturally competent communication and decision-making. Yet, no research synthesis on cross-cultural competence interventions has focused specifically on oncology. METHODS: We conducted a meta-analysis and qualitative review of literature on the effectiveness of cross-cultural competence interventions in oncology. No limitations were placed on publication date, language, oncology setting, or geographic region. Of 1.565 citations identified, 15 articles met the inclusion criteria. Information on study design, samples, measured outcomes, and effectiveness statistics were coded. Average weighted effects were calculated applying meta-analysis methodology. RESULTS: Studies were published between 2000 and 2020; more than half in the last seven years; two thirds in the USA. Overall study quality was at a low to moderate level, notably only one study provided a control-group-design. In sum, nurses constituted the largest occupational group among participants. Results of the meta-analysis indicate that cross-cultural competence interventions have differential effects. While the overall effect of cross-cultural competence interventions was not statistically significant, results showed that the cross-cultural competence dimensions of knowledge and behavior did improve. Effects beyond that remain unclear. CONCLUSIONS: We provide valuable information on research gaps. The lack of studies and insufficient methodological rigor of available studies show that more research is needed to support the claim that interventions actually improve the various dimensions of cross-cultural competence in oncology. To build a stronger evidence base, it is necessary to include patient-reported outcomes and to center their experiences in future research.

Challenges for palliative care professionals in providing spiritual care to patients from religious or cultural minority groups: a scoping review of the literature.

In light of the increasing number of people living into advanced age and the intensification of migration flows, care provision to multi-cultural and religious patient populations has become an important concern for many palliative care professionals. The current scoping review aims to explore the main barriers to spiritual care provision for minority groups and identify some strategies to overcome such obstacles. The review draws some general recommendations for researchers, policymakers and clinicians. First, more empirical research on different patient groups is needed; studies should target not only nurses, but also other healthcare providers, to ensure that practice adequately reflects the multidisciplinary nature of palliative care. Secondly, training and education should be offered in various forms and at different levels, as well as go beyond factual knowledge about the beliefs and practices of various religions.

Palliative care services in paediatric oncology centres across Europe: A cross-sectional survey.

Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: A total of 158 paediatric oncology centres from 27 European countries participated. More than half of the centres (n=102, 64.6%) reported offering specialised PPC (defined as 24/7 coverage services with specialized physician and a multidisciplinary team). Most centres included a multidisciplinary care team (n=123, 80.9%) and PC at home (n=105, 69.1%). In 38.7% centres, service capacity was reported to be lower than demand. In most centres, PC consultation was initiated for a refractory neoplasm (n=126, 81.2%). Few centres (n=11, 7.1%) offered PC consultation at the time of a new cancer diagnosis. Eighty-two centres (52.6%) reported having bereavement services. Negative parental perception (n=99, 64.7%) and late referrals (n=91, 59.5%) were major barriers to implementation perceived by health care providers. Conclusion: Our results suggest that specialised PPC is available in more than half of paediatric oncology settings across Europe. Although half have had PPC available for >10 years, many cannot fulfil the demand for service. Barriers to implementation (i.e., parental education, staff training) should be addressed, with resources and services further expanded to cover the demand for PPC, including bereavement care.

The CIVISANO protocol: a mixed-method study about the role of objective and perceived environmental factors on physical activity and eating behavior among socioeconomically disadvantaged adults.

BACKGROUND: Overweight and obesity have a strong socioeconomic profile. Unhealthy behaviors like insufficient physical activity and an unbalanced diet, which are causal factors of overweight and obesity, tend to be more pronounced in socioeconomically disadvantaged groups in high income countries. The CIVISANO project aims to identify objective and perceived environmental factors among different socioeconomic population groups that impede or facilitate physical activity and healthy eating behavior in the local context of two peri-urban Flemish municipalities in Belgium. We also aim to identify and discuss possible local interventions and evaluate the participatory processes of the project. METHODS: This study (2020-2023) will use community-based participatory tools, involving collaborative partnerships with civic and stakeholder members of the community and regular exchanges among all partners to bridge knowledge development and health promotion for socioeconomically disadvantaged citizens. Furthermore, a mixed-methods approach will be used. A population survey and geographic analysis will explore potential associations between the physical activity and eating behaviors of socioeconomically disadvantaged adults (25-65 years old) and both their perceived and objective physical, food and social environments. Profound perceptive context information will be gathered from socioeconomically disadvantaged adults by using participatory methods like photovoice, walk-along, individual map creation and group model building. An evaluation of the participatory process will be conducted simultaneously. DISCUSSION: The CIVISANO project will identify factors in the local environment that might provoke inequities in adopting a healthy lifestyle. The combination of perceived and objective measures using validated strategies will provide a robust assessment of the municipality environment. Through this analysis, the project will investigate to what extent community engagement can be a useful strategy to reduce health inequities. The strong knowledge exchange and capacity-building in a local setting is expected to contribute to our understanding of how to maximize research impact in this field and generate evidence about potential linkages between a health enhancing lifestyle among socioeconomically disadvantaged groups and their physical, food and social environments.

A healthy lifestyle is positively associated with mental health and well-being and core markers in ageing.

BACKGROUND: Studies often evaluate mental health and well-being in association with individual health behaviours although evaluating multiple health behaviours that co-occur in real life may reveal important insights into the overall association. Also, the underlying pathways of how lifestyle might affect our health are still under debate. Here, we studied the mediation of different health behaviours or lifestyle factors on mental health and its effect on core markers of ageing: telomere length (TL) and mitochondrial DNA content (mtDNAc). METHODS: In this study, 6054 adults from the 2018 Belgian Health Interview Survey (BHIS) were included. Mental health and well-being outcomes included psychological and severe psychological distress, vitality, life satisfaction, self-perceived health, depressive and generalised anxiety disorder and suicidal ideation. A lifestyle score integrating diet, physical activity, smoking status, alcohol consumption and BMI was created and validated. On a subset of 739 participants, leucocyte TL and mtDNAc were assessed using qPCR. Generalised linear mixed models were used while adjusting for a priori chosen covariates. RESULTS: The average age (SD) of the study population was 49.9 (17.5) years, and 48.8% were men. A one-point increment in the lifestyle score was associated with lower odds (ranging from 0.56 to 0.74) for all studied mental health outcomes and with a 1.74% (95% CI: 0.11, 3.40%) longer TL and 4.07% (95% CI: 2.01, 6.17%) higher mtDNAc. Psychological distress and suicidal ideation were associated with a lower mtDNAc of - 4.62% (95% CI: - 8.85, - 0.20%) and - 7.83% (95% CI: - 14.77, - 0.34%), respectively. No associations were found between mental health and TL. CONCLUSIONS: In this large-scale study, we showed the positive association between a healthy lifestyle and both biological ageing and different dimensions of mental health and well-being. We also indicated that living a healthy lifestyle contributes to more favourable biological ageing.

No wrong decisions in an all-wrong situation. A qualitative study on the lived experiences of families of children with diffuse intrinsic pontine glioma.

BACKGROUND: Diffuse intrinsic pontine glioma (DIPG) is a rare, but lethal pediatric brain tumor with a median survival of less than 1 year. Existing treatment may prolong life and control symptoms, but may cause toxicity and side effects. In order to improve child- and family-centered care, we aimed to better understand the treatment decision-making experiences of parents, as studies on this topic are currently lacking. PROCEDURE: The data for this study came from 24 semistructured interviews with parents whose children were diagnosed with DIPG in two children's hospitals in Switzerland and died between 2000 and 2016. Analysis of the dataset was done using reflexive thematic analysis. RESULTS: For most parents, the decision for or against treatment was relatively straightforward given the fatality of the tumor and the absence of treatment protocols. Most of them had no regrets about their decision for or against treatment. The most distressing factor for them was observing their child's gradual loss of independence and informing them about the inescapability of death. To counter this powerlessness, many parents opted for complementary or alternative medicine in order to "do something." Many parents reported psychological problems in the aftermath of their child's death and coping strategies between mothers and fathers often differed. CONCLUSION: The challenges of DIPG are unique and explain why parental and shared decision-making is different in DIPG compared to other cancer diagnoses. Considering that treatment decisions shape parents' grief trajectory, clinicians should reassure parents by framing treatment decisions in terms of family's deeply held values and goals.

Covid-19 and beyond: Broadening horizons about social media use in oncology. A survey study with healthcare professionals caring for youth with cancer.

Objectives: The study aimed to explore the attitudes of Swiss healthcare professionals toward the use of social media in adolescent and young adult oncology, and to examine whether the ongoing social restrictions due to COVID-19 might have altered these attitudes. Methods: This research was a survey study. The subjects were healthcare providers working in pediatric or adult oncology settings in Switzerland. 62 providers completed the survey. We performed descriptive and inferential statistical analyses. Results: While considered useful for various professional aspects (professional life 62.1%, educational purposes 72.7%, networking 83.3%, patient engagement 57.6%, clinical trial recruitment 51.5%), only a small proportion of participants actually used social media for professional reasons weekly (32.8%). Just over half considered themselves skillful in using these platforms (56.1%). Regression analysis revealed that self-assessed skillfulness with social media, the Covid-19 impact on attitudes, and the oncology setting, significantly predicted assessment of the usefulness of social media. Although, in answers to open items, institutional guidelines were deemed crucial to improve social media use, many respondents seemed unaware of their existence (50.8%). Only a minority reported an impact of Covid-19 on their attitudes towards the professional implementation of social media (25.0%). Conclusion: The global health crisis creates important challenges for young patients with cancer and their healthcare providers. In times of social restrictions, social media may be a promising tools to facilitate health information provision, connectivity, and patient care. Virtual mentorship and targeted social media training interventions might be a good way to improve familiarity with using social media and to increase awareness about existing ethical guidelines for their use.

Air pollution in association with mental and self-rated health and the mediating effect of physical activity.

BACKGROUND: Recent studies showed that air pollution might play a role in the etiology of mental disorders. In this study we evaluated the association between air pollution and mental and self-rated health and the possible mediating effect of physical activity in this association. METHODS: In 2008, 2013 and 2018 the Belgian Health Interview Survey (BHIS) enrolled 16,455 participants who completed following mental health dimensions: psychological distress, suboptimal vitality, suicidal ideation, and depressive and generalized anxiety disorder and self-rated health. Annual exposure to nitrogen dioxide (NO2), particulate matter ≤ 2.5 µm (PM2.5) and black carbon (BC) were estimated at the participants' residence by a high resolution spatiotemporal model. Multivariate logistic regressions were carried out taking into account a priori selected covariates. RESULTS: Long-term exposure to PM2.5, BC and NO2 averaged 14.5, 1.4, and 21.8 µg/m3, respectively. An interquartile range (IQR) increment in PM2.5 exposure was associated with higher odds of suboptimal vitality (OR = 1.27; 95% CI: 1.13, 1.42), poor self-rated health (OR = 1.20; 95% CI: 1.09, 1.32) and depressive disorder (OR = 1.19; 95% CI: 1.00, 1.41). Secondly, an association was found between BC exposure and higher odds of poor self-rated health and depressive and generalized anxiety disorder and between NO2 exposure and higher odds of psychological distress, suboptimal vitality and poor self-rated health. No association was found between long-term ambient air pollution and suicidal ideation or severe psychological distress. The mediation analysis suggested that between 15.2% (PM2.5-generalized anxiety disorder) and 40.1% (NO2-poor self-rated health) of the association may be mediated by a difference in physical activity. CONCLUSIONS: Long-term exposure to PM2.5, BC or NO2 was adversely associated with multiple mental health dimensions and self-rated health and part of the association was mediated by physical activity. Our results suggest that policies aiming to reduce air pollution levels could also reduce the burden of mental health disorders in Belgium.

To be or not to be in the social media arena? The perspective of healthcare providers working within adolescent and young adult oncology in Switzerland.

BACKGROUND: Given that social media is quickly penetrating clinical practice, it is essential to explore how these technologies can be used to improve patient-centered care. This is particularly important for healthcare professionals caring for adolescents and young adults (AYA), amid whom the use of social media is nearly universal and whose medical and psychosocial needs are often underestimated by the pediatric or adult oncology settings in which they are treated. OBJECTIVES: To examine the perspectives of various medical professionals on the emerging role of social media in AYA oncology. METHODS: Three focus groups were performed with Swiss healthcare professionals involved in the care of AYA patients with cancer. The focus groups were analyzed using thematic coding. RESULTS: Healthcare professionals caring for AYA cancer patients in Switzerland are reluctant to step into the social media sphere because they find it difficult to navigate professional boundaries in an unfamiliar space where different contexts collapse. Nurses and younger healthcare professionals who tend to have a more intimate relationship with AYA, often lack virtual mentorship to know how to maintain online professionalism. Adolescents and young adults cancer-related social media presence was unknown to our participants which resulted in missed occasions to inform, educate and care for this often underserved population of cancer patients. CONCLUSIONS: More practical guidance is needed to help healthcare professionals with how to integrate social media into clinical practice. Setting up fruitful collaborations between medical institutions and existing AYA support groups online might be the best way forward.

Challenges of paediatric palliative care in Romania: a focus groups study.

BACKGROUND: The availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania. METHODS: Four mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding. RESULTS: For many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation. CONCLUSION: Significant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

Childhood leukemia near nuclear sites in Belgium: An ecological study at small geographical level.

BACKGROUND: A previous investigation of the occurrence of childhood acute leukemia around the Belgian nuclear sites has shown positive associations around one nuclear site (Mol-Dessel). In the following years, the Belgian Cancer Registry has made data available at the smallest administrative unit for which demographic information exists in Belgium, i.e. the statistical sector. This offers the advantage to reduce the potential misclassification due to large geographical scales. METHODS: The current study performed for the period 2006-2016 uses Poisson models to investigate (i) the incidence of childhood acute leukemia within 20 km around the four Belgian nuclear sites, (ii) exposure-response relationships between cancer incidence and surrogate exposures from the nuclear sites (distance, wind direction frequency and exposure by hypothetical radioactive discharges taking into account historical meteorological conditions). All analyses are carried out at statistical sector level. RESULTS: Higher incidence rate ratios were found for children <15 years (7 cases, RR = 3.01, 95% CI: 1.43;6.35) and children <5 years (< 5 cases, RR = 3.62, 95% CI: 1.35;9.74) living less than 5 km from the site of Mol-Dessel. In addition, there was an indication for positive exposure-response relationships with the different types of surrogate exposures. CONCLUSION: Results confirm an increased incidence of acute childhood leukemia around Mol-Dessel, but the number of cases remains very small. Random variation cannot be excluded and the ecological design does not allow concluding on causality. These findings emphasize the need for more in-depth research into the risk factors of childhood leukemia, for a better understanding of the etiology of this disease.

Effects of various wound dressings on microbial growth in perfused equine musculocutaneous flaps.

OBJECTIVE: To compare the effect of multiple wound dressings on microbial growth in a perfused equine wound model. SAMPLE: Abdominal musculocutaneous flaps from 16 equine cadavers. PROCEDURES: 8 full-thickness skin wound covered were created in each flap. Tissues were perfused with saline (0.9% NaCl) solution. Wounds were inoculated with methicillin-resistant Staphylococcus aureus (MRSA) or Pseudomonas aeruginosa (106 CFUs), incubated, and covered with a dressing containing activated charcoal, boric acid, cadexomer iodine, calcium alginate, manuka honey, nanoparticle silver, or polyhexamethylene biguanide or with a control (nonadherent gauze) dressing. Muscle biopsy specimens were obtained at baseline (immediately prior to dressing application) and 6, 12, 18, and 24 hours later for mean bacterial load (MBL) determination. The MBLs at each subsequent time point were compared with that at baseline within dressing types, and MBLs at each time point were compared among dressing types. RESULTS: MBLs in MRSA-inoculated wounds covered with cadexomer iodine dressings were significantly decreased from baseline at the 6- and 12-hour time points. For P aeruginosa-inoculated wounds, MBLs were significantly increased from baseline in all wounds at various times except for wounds with cadexomer iodine dressings. The MBLs of wounds with cadexomer iodine dressings were lower than all others, although not always significantly different from those for wounds with boric acid, manuka honey, nanoparticle silver, and polyhexamethylene biguanide dressings. CONCLUSIONS AND CLINICAL RELEVANCE: In this nonviable perfused wound model, growth of MRSA and P aeruginosa was most effectively reduced or inhibited by cadexomer iodine dressings. These results and the effect of the dressings on wound healing should be confirmed with in vivo studies.

Ultrasonographic evaluation of the width, thickness, and length of the normal linea alba in standing and dorsal recumbent horses.

OBJECTIVE: To determine the variability in length, width, and thickness of the equine linea alba (LA) and the effect of a standing vs dorsal recumbent position on these measurements. STUDY DESIGN: Descriptive anatomical comparative study. ANIMALS: Standing horses (N = 75; in 30 horses, measurements were obtained in dorsal recumbency first and repeated after horses were standing). METHODS: Linea alba length was measured in standing position from xiphoid to umbilicus, and transverse ultrasonographic images were obtained at five reference points to measure LA width and thickness. In 30 horses, measurements were obtained in dorsal recumbency first and repeated after horses were standing. RESULTS: There was wide variation in LA width and thickness between standing horses, with gradual increase from xiphoid (range, 0.14-0.64 cm) to umbilicus (range, 0.2-2.97 cm). Linea alba length in standing position was 51.09 ± 6.219 cm. Width was independent of the size of the horse; thickness and length were correlated at some reference points to height (r = 0.346-585, P < .05) and weight (r = 0.324-0.642, P < .05). Different LA shapes could be identified. In dorsal recumbency, the LA was smaller in width at all reference points (15%-23%, P < .05) and shorter (20%, P < .001) compared with standing. CONCLUSION: In addition to the wide variability in LA measurements and shapes between horses, there was a significant decrease in LA width and length when horses changed from standing to dorsal recumbency. CLINICAL SIGNIFICANCE: The difference in LA length and width between dorsal recumbency and when standing could increase tension on sutures after laparotomy and should be taken into account when surgeons are closing the abdomen.

Environmental exposures and health behavior in association with mental health: a study design.

BACKGROUND: Air pollution, green space and smoking are known to affect human health. However, less is known about their underlying biological mechanisms. One of these mechanisms could be biological aging. In this study, we explore the mediation of biomarkers of exposure and biological aging to explain the associations between environmental exposures, health behavior and mental health. METHODS: The study population of this cross-sectional study (n = 1168) is a subsample of the Belgian 2018 Health Interview Survey (BHIS). Mental health indicators including psychological and severe psychological distress, life satisfaction, vitality, eating disorders, suicidal ideation, subjective health and depressive and anxiety disorders, demographics and health behavior such as smoking are derived from the BHIS. Urine and blood samples are collected to measure respectively the biomarkers of exposure (urinary black carbon (BC) and (hydroxy)cotinine) and the biomarkers of biological aging (mitochondrial DNA content (mtDNAc) and telomere length (TL)). Recent and chronic exposure (µg/m3) to nitrogen dioxide (NO2), particulate matter ≤2.5 µm (PM2.5) and ≤ 10 µm (PM10) and BC at the participants' residence are modelled using a high resolution spatial temporal interpolation model. Residential green space is defined in buffers of different size (50 m - 5000 m) using land cover data in ArcGIS 10 software. For the statistical analysis multivariate linear and logistic regressions as well as mediation analyses are used taking into account a priori selected covariates and confounders. RESULTS: As this study combined data of BHIS and laboratory analyses, not all data is available for all participants. Therefore, data analyses will be conducted on different subsets. Data on air pollution and green space exposure is available for all BHIS participants. Questions on smoking and mental health were answered by respectively 7829 and 7213 BHIS participants. For biomarker assessment, (hydroxy) cotinine, urinary BC and the biomarkers of biological aging are measured for respectively 1130, 1120 and 985 participants. CONCLUSION: By use of personal markers of air pollution and smoking, as well as biological aging, we will gain knowledge about the association between environmental exposures, health behavior, and the mental health status. The results of the study can provide insights on the health of the Belgian population, making it a nationwide interesting study.

Moving Beyond the Friend-Foe Myth: A Scoping Review of the Use of Social Media in Adolescent and Young Adult Oncology.

Purpose: Adolescents and young adults (AYA) with cancer present a unique challenge to health care institutions. Their cancer diagnosis and treatment have a profound impact upon their health and well-being. Despite the various support services aimed at improving their quality of life, their needs and preferences are often underestimated or misjudged. Recent studies show that patients are empowered by the knowledge and support they receive online. Given the extensive use of social media among AYA, we aim to identify promises, challenges, and recommendations for integrating these platforms in AYA cancer care. Methodology: We systematically searched seven databases systematically: Scopus, PubMed, PsycInfo, Web of Science, CINAHL, SocINDEX, and Media. We placed no restriction on the type of methodology used in the studies. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses was used to frame the research. Results: Many studies argued that health care professionals need to integrate social media in their clinical practice to engage with patients' lifeworld. Social media were considered important allies in optimizing cancer care at all levels of support, ranging from information provision, treatment adherence, diet and exercise interventions, to professional, peer, and psychosocial self-care. Lack of research on the efficacy of social media in the context of psychosocial support was a commonly cited problem. A small number of publications paid attention to the inherent risks of promoting self-care online. Conclusion: Future studies should continue to pursue empirical research on the efficacy of online psychosocial care, while not neglecting the ethical challenges of social media research.

Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study.

Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team that is mainly composed of nurses. However, only a small fraction of children receive pediatric palliative care and only a minority of them in a timely manner. The main aim was to identify barriers to the provision of pediatric palliative care in Swiss pediatric oncology. Method: This qualitative study consisted of five focus groups. In total, 29 pediatric oncology providers participated (13 nurses, 11 physicians, 4 psycho-oncologists, 1 social worker). Data were analyzed employing applied thematic analysis. Results: Analysis revealed eleven barriers: lack of financial resources, lack of prejob education regarding pediatric palliative care, lack of awareness in politics and policy making, absence of a well-established nationwide bridging care system, insufficient psychosocial and professional supervision for staff, understaffing, inadequate infrastructure of hospitals, asymmetry of factual and emotional knowledge between parents and providers, cultural aspects, irrational parental hopes, and "the unspoken." Discussion: Awareness should be raised for pediatric palliative care (in particular in demarcation from palliative care in adults) among politics and policy makers which could lead to increased financial resources that, in turn, could be used to improve bridging care, hospital's infrastructure, and team support. More flexibility for care determining factors is needed, for example, with respect to convening team meetings, short-termed staffing, and reimbursement at the interface between inpatient and outpatient services.

The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective.

BACKGROUND: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care. METHODS: Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding. RESULTS: Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children's everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive "word of mouth". CONCLUSIONS: The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.

Continuous Deep Sedation and Euthanasia in Pediatrics: Does One Really Exclude the Other for Terminally Ill Patients?

Debates on morally acceptable and lawful end-of-life (EOL) practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death (CDS). We demonstrate that this reasoning is based on flawed assumptions: (1) CDS is a morally preferable alternative to euthanasia; (2) CDS can meet the same patient needs as euthanasia; (3) children lack the capacity and experience to make EOL decisions; (4) unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices.

Palliative care initiation in pediatric oncology patients: A systematic review.

Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline.

Better to know than to imagine: Including children in their health care.

BACKGROUND: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. METHODS: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. RESULTS: Parenting styles, the child's personality, and maturity are factors that have a great impact upon the inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent-child and physician-patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. CONCLUSIONS: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities.