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.

A national survey of Swiss paediatric oncology care providers' cross-cultural competences.

BACKGROUND AND PURPOSE: Culturally diverse countries such as Switzerland face the challenge of providing cross-cultural competent care. Cross-cultural competent care needs an understanding of a patient's cultural context in order to provide safe and effective care. Therefore, we sought to examine cross-cultural competence of Swiss paediatric oncology care providers, and to explore their perceptions of barriers to and facilitators of cross-culturally competent care. DESIGN AND SAMPLE: We conducted a cross-sectional study. The data collection period was three weeks. Providers were recruited through collaborators at the participating paediatric oncology centres. All occupational groups who are in direct contact with patients and involved in their care were eligible (e.g., physicians, nurses, social workers, occupational therapists and physiotherapists). Surveying providers online, we captured five subscales of their cross-cultural competence and their perceptions as to how to facilitate cross-culturally competent paediatric oncology care. We employed the Cross-Cultural Competence of Healthcare Professionals (CCCHP) questionnaire. Besides descriptive and inferential statistics, we performed content analysis. FINDINGS: The response rate was 73.2% (n = 183/250). Analyses revealed differences in cross-cultural competence between occupational groups of paediatric oncology providers. Overall, social workers' cross-cultural competence was higher than nurses' or occupational therapists' and physiotherapists' cross-cultural competence. Physicians' cross-cultural competence was higher than nurses (with no statistically significant difference identified between physicians, occupational therapists and physiotherapists). Furthermore, our results suggest noteworthy differences among the four main occupational groups on the five CCCHP subscales. Physicians and social workers declared more positive attitudes than nurses; occupational therapists and physiotherapists reported lower skills than the other three groups; social workers scored higher on the emotions and empathy subscale than the other three groups; physicians were more knowledgeable and aware than nurses. Most frequently mentioned barriers were: language barriers (68.5%), different culture and values (19.2%), different illness understanding (9.2%). Most frequently mentioned facilitators were: professional translators (47.2%), continuous training (20.8%), professional cultural mediators (8.8%). CONCLUSIONS/IMPLICATIONS: Trainings and interventions are widely considered a principal strategy to advance providers' cross-cultural competence. Our findings of differences in cross-cultural competence among occupational groups further underpin the need to adapt training programmes and interventions to the respective occupational group and the respective dimension(s) of cross-cultural competence. In addition, professional translators and cultural mediators should be used. Lastly, reciprocal supervision and the promotion of multidisciplinary teams is crucial to enable oncology care providers to learn from each other and this exchange could also help to reduce some of the differences between the various occupational groups.

Consensus Minimal Dataset for Pediatric Emergency Medicine in Switzerland.

OBJECTIVES: Standardized, harmonized data sets generated through routine clinical and administrative documentation can greatly accelerate the generation of evidence to improve patient care. The objective of this study was to define a pediatric emergency medicine (PEM) minimal dataset for Switzerland (Swiss PEM minimal dataset) and to contribute a subspecialty module to a national pediatric data harmonization process (SwissPedData). METHODS: We completed a modified Delphi survey, inviting experts from all major Swiss pediatric emergency departments (PEDs). RESULTS: Twelve experts from 10 Swiss PEDs, through 3 Delphi survey rounds and a moderated e-mail discussion, suggested a subspecialty module for PEM to complement the newly developed SwissPedData main common data model (CDM). The PEM subspecialty CDM contains 28 common data elements (CDEs) specific to PEM. Additional CDEs cover PEM-specific admission processes (type of arrival), timestamps (time of death), greater details on investigations and treatments received at the PED, and PEM procedures (eg, procedural sedation). In addition to the 28 CDEs specific to PEM, 43 items from the SwissPedData main CDM were selected to create a Swiss PEM minimal dataset. The final Swiss PEM minimal dataset was similar in scope and content to the registry of the Pediatric Emergency Care Applied Research Network. CONCLUSIONS: A practical minimal dataset for PEM in Switzerland was developed through recognized consensus methodology. The Swiss PEM minimal dataset developed by Swiss PEM experts will facilitate international data sharing for PEM research and quality improvement projects.

Access to paediatric oncology centres in Switzerland: Disparities across rural-urban and Swiss-foreigners cohorts.

OBJECTIVE: In face of disparities in access to cancer care, it has been proposed to measure accessibility and to explore policy strategies for mitigating inequality of access. We aimed to determine the accessibility of Swiss paediatric oncology centres. METHODS: We employed spatial accessibility analysis, calculating driving time to nearest facility. Four data types were used: disaggregated population data, administrative data, street network data and addresses of centres. Besides analysing general accessibility, we compared access of urban versus rural areas and of Swiss citizens versus foreign residents and evaluated designating a new centre to improve accessibility. RESULTS: Overall, 97.4% could reach the nearest centre within 120 min (95.0% < 90 min, 86.5% < 60 min, 48.5% < 30 min). Accessibility could most effectively be improved by a new centre in Sion (city in the southwest of Switzerland). Access in urban areas was better than in rural areas. In urban areas, access of European Union/European Free Trade Association (EU/EFTA) and non-European residents was better than access of Swiss citizens and residents from non-EU European countries. CONCLUSION: Access is satisfactory. However, our study presents high-resolution insights which could serve as points of leverage for policymakers to mitigate inequalities by designating a new centre and to evaluate potential benefits of centralisation.

SwissPedData: Standardising hospital records for the benefit of paediatric research.

BACKGROUND: Improvement of paediatric healthcare is hampered by inefficient processes for generating new evidence. Clinical research often requires extra encounters with patients, is costly, takes place in an artificial situation with a biased selection of patients, and entails long delays until new evidence is implemented into health care. Electronic health records (EHR) contain detailed information on real patients and cover the entirety of patients. However, the use of EHR for research is limited because they are not standardised between hospitals. This leads to disproportionate amounts of work for extracting data of interest and frequently data are incomplete and of poor quality. AIMS: SwissPedData aims to lay the foundation for a paediatric learning health system in Switzerland by facilitating EHR-based research. In this project, we aimed to assess the way routine clinical data are currently recorded in large paediatric clinics in Switzerland and to develop a national EHR-based set of common data elements (CDEs) that covers all processes of routine paediatric care in hospitals. METHODS: A taskforce of paediatricians from large Swiss children's hospitals reviewed the current status of routine data documentation in paediatric clinical care and the extent of digitalisation. We then used a modified Delphi method to reach a broad consensus on a national EHR-based set of CDEs. RESULTS: All Swiss children's hospitals use EHR to document some or all aspects of care. One hundred and nineteen paediatricians, representing eight hospitals and all paediatric subspecialties, participated in an extended Delphi process to create SwissPedData. The group agreed on a national set of CDEs that comprises a main module with general paediatric data and sub-modules relevant to paediatric subspecialties. The data dictionary includes 336 CDEs: 76 in the main module on general paediatrics and between 11 and 59 CDEs per subspecialty module. Among these, 266 were classified as mandatory, 52 as recommended and 18 as optional. CONCLUSION: SwissPedData is a set of CDEs for information to be collected in EHR of Swiss children's hospitals. It covers all care processes including clinical and paraclinical assessment, diagnosis, treatment, disposition and care site. All participating hospitals agreed to implement SwissPedData in their clinical routine and clinic information systems. This will pave the way for a national paediatric learning health system in Switzerland that enables fast and efficient answers to urgent clinical questions by facilitating high-quality nationwide retrospective and prospective observational studies and recruitment of patients for nested prospective studies and clinical trials.

Clinical data for paediatric research: the Swiss approach : Proceedings of the National Symposium in Bern, Switzerland, Dec 5-6, 2019.

BACKGROUND AND PURPOSE: Continuous improvement of health and healthcare system is hampered by inefficient processes of generating new evidence, particularly in the case of rare diseases and paediatrics. Currently, most evidence is generated through specific research projects, which typically require extra encounters with patients, are costly and entail long delays between the recognition of specific needs in healthcare and the generation of necessary evidence to address those needs. The Swiss Personalised Health Network (SPHN) aims to improve the use of data obtained during routine healthcare encounters by harmonizing data across Switzerland and facilitating accessibility for research. The project "Harmonising the collection of health-related data and biospecimens in paediatric hospitals throughout Switzerland (SwissPedData)" was an infrastructure development project funded by the SPHN, which aimed to identify and describe available data on child health in Switzerland and to agree on a standardised core dataset for electronic health records across all paediatric teaching hospitals. Here, we describe the results of a two-day symposium that aimed to summarise what had been achieved in the SwissPedData project, to put it in an international context, and to discuss the next steps for a sustainable future. The target audience included clinicians and researchers who produce and use health-related data on children in Switzerland. KEY HIGHLIGHTS: The symposium consisted of state-of-the-art lectures from national and international keynote speakers, workshops and plenary discussions. This manuscript summarises the talks and discussions in four sections: (I) a description of the Swiss Personalized Health Network and the results of the SwissPedData project; (II) examples of similar initiatives from other countries; (III) an overview of existing health-related datasets and projects in Switzerland; and (IV) a summary of the lessons learned and future prospective from workshops and plenary discussions. IMPLICATIONS: Streamlined processes linking initial collection of information during routine healthcare encounters, standardised recording of this information in electronic health records and fast accessibility for research are essential to accelerate research in child health and make it affordable. Ongoing projects prove that this is feasible in Switzerland and elsewhere. International collaboration is vital to success. The next steps include the implementation of the SwissPedData core dataset in the clinical information systems of Swiss hospitals, the use of this data to address priority research questions, and the acquisition of sustainable funding to support a slim central infrastructure and local support in each hospital. This will lay the foundation for a national paediatric learning health system in Switzerland.

Rotavirus disease and health care utilisation among children under 5 years of age in highly developed countries: A systematic review and meta-analysis.

BACKGROUND: Rotavirus (RV) infection is the leading cause of diarrhoea-associated morbidity and mortality globally among children under 5 years of age. RV vaccination is available, but has not been implemented in many national immunisation plans, especially in highly developed countries. This systematic review aimed to estimate the prevalence and incidence of health care use for RV gastroenteritis (RVGE) among children aged under 5 years in highly developed countries without routine RV vaccination. METHODS: We searched MEDLINE and Embase databases from January 1st 2000 to December 17th 2018 for publications reporting on incidence or prevalence of RVGE-related health care use in children below 5 years of age: primary care and emergency department (ED) visits, hospitalisations, nosocomial infections and deaths. We included only studies with laboratory-confirmed RV infection, undertaken in highly developed countries with no RV routine vaccination plans. We used random effects meta-analysis to generate summary estimates with 95% confidence intervals (CI) and prediction intervals. RESULTS: We screened 4033 abstracts and included 74 studies from 21 countries. Average incidence rates of RVGE per 100 000 person-years were: 2484 (95% CI 697-5366) primary care visits, 1890 (1597-2207) ED visits, 500 (422-584) hospitalisations, 34 (20-51) nosocomial infections and 0.04 (0.02-0.07) deaths. Average proportions of cases of acute gastroenteritis caused by RV were: 21% (95% CI 16-26%) for primary care visits; 32% (25-38%) for ED visits; 41% (36-47%) for hospitalisations, 29% (25-34%) for nosocomial infections and 12% (8-18%) for deaths. Results varied widely between and within countries, and heterogeneity was high (I2 > 90%) in most models. CONCLUSION: RV in children under 5 years causes many healthcare visits and hospitalisations, with low mortality, in highly developed countries without routine RV vaccination. The health care use estimates for RVGE obtained by this study can be used to model RV vaccine cost-effectiveness in highly developed countries.

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.

Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children.

Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.

The Beneficence of Hope: Findings from a Qualitative Study with Gout and Diabetes Patients.

This paper explores the importance of hope as a determining factor for patients to participate in first-in-human trials for synthetic biology therapies. This paper focuses on different aspects of hope in the context of human health and well-being and explores the varieties of hope expressed by patients. The research findings are based on interview data collected from stable gout and diabetes patients. Three concepts of hope have emerged from the interviews: hope as certainty (H1); hope as reflective uncertainty (H2); hope as self-therapy (H3). The purpose of the paper is twofold. First, it aims to underline the significance of hope in patients' medical decision-making, as well as the beneficence of hope for patients' well-being, and for progress in research. Second, it shows how philosophical investigations-in particular Descartes-explore the phenomenon of hope and provide medical empirical research with profitable insights and tools.

Feelings of Burden in Palliative Care: A Qualitative Analysis of Medical Records.

BACKGROUND: Care for palliative care patients is often provided by unpaid caregivers (eg, family members) who take care of the patient's daily needs (eg, bathing, dressing). Family members of palliative care patients are involved in numerous ways. These tasks and responsibilities can make them feel burdened and even overburdened. AIM: We specifically looked at patients' medical records to determine what is being reported about burden and overburden and who seems to be mostly affected. Burden was understood as a weight or task that is difficult to accept or carry, whereas overburden indicates that this weight or task cannot be carried anymore. METHODS: We looked at 300 medical records of palliative care patients written by health-care professionals. Written notes were analyzed using latent content analysis as it helps to analyze large amounts of textual data qualitatively and to understand the underlying concepts of what was said. RESULTS: Most (73.5%) patients had a cancer diagnosis. Mean age was 67.6 years (range, 22-98 years). Burden and overburden were identified as main categories and further divided into the following subcategories: for patients and families. According to the written notes, patients often felt burdened by their disease, financial problems, situation at home, and families' reactions to their disease. By and large, patients felt overburdened by their own disease. Families often felt burdened because of issues related to patients' medical condition, providing home care, or financial and social aspects. Families mentioned home care and the decision-making process as being overburdening. CONCLUSION: Findings in the palliative care patients' medical records are inasmuch important, as they point at the health-care staff's awareness of possible weights and tasks that might be burdensome for patients and their families. Attention should be drawn to the documentation of medical records in order to identify recurrent difficulties and to help discuss these.

Enhancing patients' autonomy by involving them in research ethics committees.

OBJECTIVE: Although clinical trial participants are the most affected by research ethics committee's decisions, they are not formally represented on Swiss committees. We aimed to find out what patients think about the idea of being members of such committees. DESIGN: Latent thematic analysis was used to analyse the interviews. SETTING: Patients were recruited in a Swiss university hospital. PARTICIPANTS: The study involved 26 patients suffering from diabetes or gout. INTERVENTIONS: We conducted semi-structured interviews. MAIN OUTCOME MEASURES: We explored what patients think of being established members of research ethics committees. RESULTS: We identified three different attitudes among our participants regarding participation in research ethics committees: (i) positive attitude regarding the idea of being members of such committees, (ii) ambivalent attitude and (iii) negative attitude. Patients belonging to the first group (i) often mentioned that they wanted their health condition to be more visible. Patients from the second group (ii) mentioned positive as well as negative aspects. Patients from the third group (iii) said that patients in general did not have enough background knowledge to be able to gain an overview of a whole clinical trial. CONCLUSIONS: Our study adds important knowledge about the idea of patients becoming research ethics committee members by exploring their perceptions of being members. Stable patients tended to be interested in the idea of participation and some specific recommendations could be derived (patients could have an advisory instead of a decision-making role on committees). However, further studies with more patients and further quantitative research are needed.

Autonomy and Fear of Synthetic Biology: How Can Patients' Autonomy Be Enhanced in the Field of Synthetic Biology? A Qualitative Study with Stable Patients.

We analyzed stable patients' views regarding synthetic biology in general, the medical application of synthetic biology, and their potential participation in trials of synthetic biology in particular. The aim of the study was to find out whether patients' views and preferences change after receiving more detailed information about synthetic biology and its clinical applications. The qualitative study was carried out with a purposive sample of 36 stable patients, who suffered from diabetes or gout. Interviews were transcribed verbatim, translated and fully anonymized. Thematic analysis was applied in order to examine stable patients' attitudes towards synthetic biology, its medical application, and their participation in trials. When patients were asked about synthetic biology in general, most of them were anxious that something uncontrollable could be created. After a concrete example of possible future treatment options, patients started to see synthetic biology in a more positive way. Our study constitutes an important first empirical insight into stable patients' views on synthetic biology and into the kind of fears triggered by the term "synthetic biology." Our results show that clear and concrete information can change patients' initial negative feelings towards synthetic biology. Information should thus be transmitted with great accuracy and transparency in order to reduce irrational fears of patients and to minimize the risk that researchers present facts too positively for the purposes of persuading patients to participate in clinical trials. Potential participants need to be adequately informed in order to be able to autonomously decide whether to participate in human subject research involving synthetic biology.