Impact of structural racism on inclusion and diversity in precision oncology: A scoping and critical review of the literature.

Inclusion and diversity in precision oncology are essential in reducing cancer disparities among racial and ethnic groups. However, present studies have favored the recruitment and participation of Whites, with limited applicability of their results to minority groups. Many reasons for their underrepresentation are downstream manifestations of structural racism. Therefore, this scoping review provides a precise mapping of recruitment and participation barriers for minorities in precision oncology that are associated with structural racism, including a critical appraisal of how disciplinary norms, paradigms, and tools used therein could inadvertently contribute to unforeseen inclusion and diversity challenges. Empirical and theoretical publications from Web of Science and PubMed were searched and analyzed to identify recruitment and participation barriers for minorities in precision oncology. In addition, using the public health critical race praxis (PHCRP) as guiding analytical framework, empirical studies were analyzed to identify unforeseen barriers resulting from simplification processes, assumptions, norms, paradigms, and tools used during the research process. One-hundred thirty-five barriers to recruitment and participation were identified or reported in included publications. They were subsequently categorized as being a manifestation of one of the following forms of racism, namely internalized, interpersonal, institutional, and structural racism. The PCHRP analysis revealed four additional factors to be considered in precision oncology studies in ensuring appropriate representation of their study populations. Future interventions aimed at reducing health disparities should focus predominantly on barriers associated with structural and institutional racism, which should then have ripple effects on other forms of racism. Importantly, the four factors identified through the PHCRP framework could further explain the lower participation rates of minorities in precision oncology and related activities. Therefore, they should be given due consideration by all stakeholders involved in the precision oncology ecosystem, from researchers and healthcare professionals to policy-makers, research ethics committees, and funders.

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.

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.

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.

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.

Polypharmacy and drug-drug interactions among older and younger male prisoners in Switzerland.

PURPOSE: The purpose of this paper is to determine the prevalence of polypharmacy and drug-drug interactions (DDIs) in older and younger prisoners, and compared if age group is associated with risks of polypharmacy and DDIs. DESIGN/METHODOLOGY/APPROACH: For 380 prisoners from Switzerland (190 were 49 years and younger; 190 were 50 years and older), data concerning their medication use were gathered. MediQ identified if interactions of two or more substances could lead to potentially adverse DDI. Data were analysed using descriptive statistics and generalised linear mixed models. FINDINGS: On average, older prisoners took 3.8 medications, while younger prisoners took 2.1 medications. Number of medications taken on one reference day was higher by a factor of 2.4 for older prisoners when compared to younger prisoners (p = 0.002). The odds of polypharmacy was significantly higher for older than for younger prisoners (>=5 medications: odds ratio = 5.52, p = 0.035). Age group analysis indicated that for potentially adverse DDI there was no significant difference (odds ratio = 0.94; p = 0.879). However, when controlling for the number of medication, the risk of adverse DDI was higher in younger than older prisoners, but the result was not significant. ORIGINALITY/VALUE: Older prisoners are at a higher risk of polypharmacy but their risk for potentially adverse DDI is not significantly different from that of younger prisoners. Special clinical attention must be given to older prisoners who are at risk for polypharmacy. Careful medication management is also important for younger prisoners who are at risk of very complex drug therapies.

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.

Content, evaluations and influences in newspaper coverage of predictive genetic testing: A comparative media content analysis from the United Kingdom and Switzerland.

Predictive genetic testing often entails challenging decisions about preventive measures and uncertain health-related risk predictions. Because of its increasing availability, it is important to assess how to debate it publicly. Newspaper content analysis represents a common and reliable way to investigate public discourse retrospectively. We thus quantitatively compare broadsheet newspaper coverage about predictive genetic testing in the United Kingdom and Switzerland during the period of 2011-2016 regarding content, evaluations, stakeholder influence, and trigger events. British coverage was more extensive and positive and included more personal stories. Swiss coverage had more focus on political issues. Angelina Jolie's announcement about her double mastectomy was the most important coverage trigger. Researchers were the most frequently cited stakeholder group, but stakeholders from government and civil society were also represented. Our results thus reflect a movement toward a more active public engagement with predictive genetic testing. The findings help to improve and enrich public engagement regarding predictive genetic testing.

Oncofertility Decision Making: Findings from Israeli Adolescents and Parents.

PURPOSE: To date, few studies qualitatively investigate adolescent oncofertility decision making. This qualitative study seeks to understand the experiences of adolescents and parents in making oncofertility decisions within the pronatalist context of Israeli society. METHODS: Semi-structured interviews were conducted in Israel with adolescents between the ages of 12 and 19 years who were in remission for at least 2 months and had been offered fertility preservation (FP) of sperm, ova, or ovary cryopreservation, and their parents, separately. Transcripts were thematically analyzed. RESULTS: Thirty-five interviews were conducted-16 with adolescents and 19 with parents-representing 20 cases of FP decision making. Adolescents and parents do not necessarily view decision making in the same way. Both parties mention a variety of factors in and justifications for FP decisions. Although most participants imagine the adolescent will use cryopreserved biological materials only if s/he experiences reproductive difficulties, nearly all participants do not recall having discussed what to do with these materials in the case of death. Many adolescents and parents feel comfortable waiting to take further action regarding adolescent fertility until the topic has greater relevance to the adolescent's life. Satisfaction with FP decision making is nearly unanimous, regardless of whether FP was pursued. CONCLUSION: As in other cultural contexts, Israeli adolescents and parents demonstrate multifaceted decision making with respect to oncofertility. A significant finding from this study suggests that health professionals shy from discussing posthumous planning of cryopreserved materials with adolescent cancer patients and their parents. Further investigation is warranted to determine whether this is a uniquely Israeli phenomenon, the cause for it, and how to overcome it.

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.

Reasons for and Frequency of End-of-Life Hospital Admissions: General Practitioners' Perspective on Reducing End-of-Life Hospital Referrals.

BACKGROUND: Many palliative care patients are admitted to hospital shortly before death even though the acute hospital setting is not considered ideal for end-of-life care (EOLC). OBJECTIVES: This study aimed to evaluate General Practitioners' (GPs') perspective on the frequency of and reasons for hospital referrals of these patients. METHODS: Cross-sectional survey involving a stratified random sample of 2000 GPs in Switzerland in 2014. GP characteristics, frequency and type of end-of-life transfers, reasons for referrals, confidence in EOLC, and regional palliative care provision were assessed. Multivariate regression analysis was performed to identify the variables associated with frequency of hospital referrals at the end of life. RESULTS: The questionnaire was completed by 579 (31%) GPs. Frequent hospital referrals shortly before death were reported by 38%. GPs were less likely to report frequent hospitalizations when they felt confident in palliative care competencies, especially in anticipation of crisis. GPs were more likely to report frequent hospitalizations as being due to relatives' wishes, difficulties in symptom control, inadequate or absent care network, and the expense of palliative care at home. CONCLUSIONS: The results suggest that adequate support of and a care network for palliative patients and their caregivers are crucial for continuous home-based EOLC. Timely recognition of the advanced palliative phase as well as the involvement of well-trained GPs who feel confident in palliative care, together with adequate financial support for outpatient palliative care, might diminish the frequency of transitions shortly before death.

Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records.

PURPOSE: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care. METHODS: Using a standardized data extraction form, a retrospective review of medical records of deceased pediatric patients was conducted. The form captured information on demographics, diagnosis, relapse(s), treatments, decision-making during palliative care, and circumstances surrounding a child's death. RESULTS: For 170 patients, there was information on whether the child received palliative care. Among those, 38 cases (22%) did not receive palliative care. For 16 patients, palliative care began at diagnosis. The mean duration of palliative care was 145 days (Mdn = 89.5, SD = 183.4). Decision to begin palliative care was discussed solely with parent(s) in 60.9% of the cases. In 39.1%, the child was involved. These children were 13.6 years of age (SD = 4.6), whereas those not included were 7.16 years old (SD = 3.9). Leukemia patients were less likely to receive palliative care than the overall sample, and patients with CNS neoplasms received palliative care for a longer time than other patients. CONCLUSIONS: There are still high numbers of late or non-referrals, and even children older than 12 years were not involved in decision-making regarding palliative care. These results do not align with international organizational guidelines which recommend that palliative care should begin at diagnosis.

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.

Parents' and Physicians' Perceptions of Children's Participation in Decision-making in Paediatric Oncology: A Quantitative Study.

The goal is to present how shared decision-making in paediatric oncology occurs from the viewpoints of parents and physicians. Eight Swiss Pediatric Oncology Group centres participated in this prospective study. The sample comprised a parent and physician of the minor patient (<18 years). Surveys were statistically analysed by comparing physicians' and parents' perspectives and by evaluating factors associated with children's actual involvement. Perspectives of ninety-one parents and twenty physicians were obtained for 151 children. Results indicate that for six aspects of information provision examined, parents' and physicians' perceptions differed. Moreover, parents felt that the children were more competent to understand diagnosis and prognosis, assessed the disease of the children as worse, and reported higher satisfaction with decision-making on the part of the children. A patient's age and gender predicted involvement. Older children and girls were more likely to be involved. In the decision-making process, parents held a less active role than they actually wanted. Physicians should take measures to ensure that provided information is understood correctly. Furthermore, they should work towards creating awareness for systematic differences between parents and physicians with respect to the perception of the child, the disease, and shared decision-making.

Adolescent oncofertility discussions: Recommendations from a systematic literature review.

BACKGROUND: Increasing cancer incidence and survivorship rates have made late-term effects, such as effects on fertility, a salient issue for adolescent cancer patients. While various barriers make it difficult for health care professionals to discuss oncofertility with adolescents and their parents, there are numerous reasons to hold such discussions, based on professional obligations and the ethical principles of respect for autonomy and beneficence. This systematic literature review presents and critically examines recommendations for adolescent oncofertility discussions. METHODS: Conducted according to PRISMA guidelines, this systematic literature review includes English, French, and German articles published up until December 31, 2014. Articles were sought via a combination of search terms in four databases. RESULTS: Eighty of 96 articles included in this review address recommendations for improving adolescent oncofertility discussions. These recommendations deal with how, when, what, and with whom professionals ought to have these discussions, as well as various systemic barriers and ways to address them. CONCLUSIONS: Based upon the principles of beneficence, respect for autonomy, and justice, we endorse several recommendations for oncofertility discussions with adolescents and their parents, including having a specific professional on the health care team initiate these discussions with all newly diagnosed patients; regularly doing so before, during, and after treatment; allowing adolescents to decide for themselves whom they wish to include in such discussions; employing various forms of communication; obtaining both adolescent assent and parental consent for fertility preservation (FP) procedures, especially at each stage (e.g., procurement and use); properly educating and training professionals to discuss oncofertility; promoting interdisciplinary collaboration; creating and implementing guidelines and policies; and ensuring equity of access to FP.

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.

Decision making in pediatric oncology: Views of parents and physicians in two European countries.

BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options. METHODS: This qualitative interview study explored decision-making processes for children with cancer at different stages in their treatment in Switzerland and Romania. RESULTS: Thematic analysis of interviews conducted with parents and oncologists identified decision making as a heterogeneous process in both countries. Various decisions were made based on availability and reasonableness of care options. In most cases, at the time of diagnosis, parents were confronted with a "choiceless choice"-that is, there was only one viable option (a standard protocol), and physicians took the lead in making decisions significant for health outcomes. Parents' and sometimes children's role increased during treatment when they had to make decisions regarding research participation and aggressive therapy or palliative care. Framing these results within the previously described Decisional Priority in Pediatric Oncology Model (DPM) highlights family's more prominent position when making elective decisions regarding quality-of-life or medical procedures, which had little effect on health outcomes. The interdependency between oncologists, parents, and children is always present. Communication, sharing of information, and engaging in discussions about preferences, values, and ultimately care goals should be decision making's foundation. CONCLUSIONS: Patient participation in these processes was reported as sometimes limited, but parents and oncologists should continue to probe patients' abilities and desire to be involved in decision making. Future research should expand the DPM and explore how decisional priority and authority can be shared by oncologists with parents and even patients.