Search

Background: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal‐setting. Methods: The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points. Results: A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p =.010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p =.008). Conclusions: Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment‐related suffering. Prognostic communication, however, does influence palliative goal‐setting. Evidence‐based interventions are needed to encourage timely, person‐centered prognostic disclosure in the setting of advanced pediatric cancer. Plain Language Summary: Many parents of children with poor‐prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering.Little is known about which factors influence parents to choose palliative care as their child's main treatment goal.To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time.We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals.However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care. The authors collected prospective, longitudinal surveys from parents of children with relapsed and/or refractory neuroblastoma at nine pediatric cancer centers across the United States to identify variables associated with parents' report of palliative goals across advancing illness. They found that parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment‐related suffering, but prognostic communication does influence palliative goal‐setting. [ABSTRACT FROM AUTHOR]

Background: In the face of unprecedented challenges because of coronavirus disease 2019, interdisciplinary pediatric oncology teams have developed strategies to continue providing high‐quality cancer care. This study explored factors contributing to health care resilience as perceived by childhood cancer providers in all resource level settings. Methods: This qualitative study consisted of 19 focus groups conducted in 16 countries in 8 languages. Seven factors have been previously defined as important for resilient health care including: 1) in situ practical experience, 2) system design, 3) exposure to diverse views on the patient's situation, 4) protocols and checklists, 5) teamwork, 6) workarounds, and 7) trade‐offs. Rapid turn‐around analysis focused on these factors. Results: All factors of health care resilience were relevant to groups representing all resource settings. Focus group participants emphasized the importance of teamwork and a flexible and coordinated approach to care. Participants described collaboration within and among institutions, as well as partnerships with governmental, private, and nonprofit organizations. Hierarchies were advantageous to decision‐making and information dissemination. Clinicians were inspired by their patients and explained creative trade‐offs and workarounds used to maintain high‐quality care. Conclusions: Factors previously described as contributing to resilient health care manifested differently in each institution but were described in all resource settings. These insights can guide pediatric oncology teams worldwide as they provide cancer care during the next phases of the pandemic. Understanding these elements of resilience will also help providers respond to inevitable future stressors on health care systems. This multinational, multicenter, qualitative study illustrates how pediatric oncology providers used resilient health care strategies, illuminating creative solutions to mitigate impact, many of which may outlast the pandemic. [ABSTRACT FROM AUTHOR]

Background: Interdisciplinary teamwork supports high‐quality cancer care and effective utilization of limited resources. This study purposed to examine the value, structure, process, and effectiveness of interdisciplinary care (IDC) among pediatric oncology providers in low‐income and middle‐income countries in Central America and the Caribbean. Methods: A cross‐sectional survey was disseminated to pediatric oncology providers at 5 centers participating in the Pediatric Hematology‐Oncology Association of Central America. The survey included previously validated items and novel questions assessing the value (importance), structure (multidisciplinary meeting attendance), process (team climate), and effectiveness (job satisfaction, quality of care and communication) of IDC. Results: The survey was completed by 174 providers, including 22 oncologists, 9 pathologists, 9 radiologists, 5 radiation oncologists, 12 surgeons, 35 subspecialists, 60 nurses, 20 psychosocial providers, and 2 other staff. Participants agreed that IDC benefits team members (95%) and patients (96%). IDC structure and processes varied across the region. Multidisciplinary meeting attendance differed by center (P =.005) and discipline (P <.0001). Participants who frequently attended multidisciplinary meetings reported a more positive team climate (P =.0003). Team climate was positively associated with job satisfaction (P <.001). In multivariable analyses, team climate was predictive of an improved perception of communication between professionals (P <.0001), with families (P <.0001), and with patients (P =.0005), as well as with quality of the care environment (P =.006) and overall care quality (P <.0001). Conclusions: Nearly all surveyed participants valued IDC, and the structure and processes supporting IDC varied by center. Associations between a collaborative professional climate, job satisfaction, and the perception of quality care encourage continued investigation and prioritization of IDC in these settings. Structures and processes supporting interdisciplinary care for pediatric oncology patients in Central America and the Caribbean vary. Associations between a collaborative professional climate, job satisfaction, and perception of quality care support the continued investigation and prioritization of interdisciplinary care in these settings. [ABSTRACT FROM AUTHOR]

Background: Communication serves several functions in pediatric oncology, but communication deficiencies persist. Little is known about the broad spectrum of barriers contributing to these deficiencies. Identifying these barriers will support new strategies to improve communication. Methods: The authors performed 10 focus groups on perceived communication barriers with nurses, nurse practitioners, physicians, and psychosocial professionals across 2 academic institutions. They analyzed transcripts by adapting a multilevel framework from organizational psychology. Results: The authors identified 6 levels of barriers to communication from the clinicians' perspectives: individual, team, organization, collaborating hospital, community, and policy. Individual barriers were subdivided into clinician characteristics, family characteristics, or characteristics of the clinician‐family interaction. Within each level and sublevel, several manifestations of barriers were identified. Some barriers, such as a lack of comfort with difficult topics (individual), cultural differences (individual), a lack of a shared team mental model (team), and time pressure (organization), manifested similarly across professions and institutions. Other barriers, such as a need for boundaries (individual), intimidation or embarrassment of family (individual), unclear roles and authority (team), and excessive logistical requirements (policy), manifested differently across professions. With the exception of collaborating hospitals, participants from all professions identified barriers from each level. Physicians did not discuss collaborating hospital barriers. Conclusions: Nurses, nurse practitioners, physicians, and psychosocial professionals experience communication barriers at multiple levels, which range from individual‐ to policy‐level barriers. Yet their unique clinical roles and duties can lead to different manifestations of some barriers. This multilevel framework might help clinicians and researchers to identify targets for interventions to improve communication experiences for families in pediatric oncology. Lay Summary: Clinicians and families experience many barriers to communication in pediatric oncology.The authors performed 10 focus groups with 59 clinicians who cared for children with cancer. In these focus groups, barriers to effective communication were discussed.In this article, the authors report on an analysis of the responses. Six levels of barriers to communication were found: individual, team, organization, collaborating hospital, community, and policy.With an understanding of these barriers, interventions can be developed to target these barriers in hopes of improving communication for parents and patients in pediatric oncology. Clinicians and families experience many barriers to communication in pediatric oncology. A content analysis of clinician focus groups identifies 6 levels of communication barriers. [ABSTRACT FROM AUTHOR]

Background: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low‐income and middle‐income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia. Methods: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence‐based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open‐ended responses. Results: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%‐96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P <.001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance. Conclusions: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region. The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care in Eurasia. Primary barriers to timely consultation included limited access to palliative care services and specialists, a lack of physician education, and perceived family resistance. [ABSTRACT FROM AUTHOR]

Background: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care.Methods: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses.Results: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care.Conclusions: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context. [ABSTRACT FROM AUTHOR]

Background: Prospective investigation of medical dialogue is considered the gold standard in prognostic communication research. To the authors' knowledge, the achievability of collecting mixed methods data across an evolving illness trajectory for children with cancer is unknown.Methods: The objective of the current study was to investigate the feasibility and acceptability of recording sequential medical discussions at disease reevaluation time points for children with high-risk cancer. Mixed methods data (ie, surveys, interviews, checklists, and chart reviews) corresponding to each disease reevaluation conversation also were captured in real-time for 34 patients across 24 months at an academic pediatric cancer center.Results: All eligible oncology clinicians (65 of 65 clinicians; 100%) and the majority of eligible patient/parent dyads (34 of 41 dyads; 82.9%) enrolled on the study; of 200 disease reevaluation discussions, 185 discussions (92.5%) were recorded, totaling >3300 minutes of recorded medical dialogue. Longitudinal data were captured for 31 of 34 patient/parent dyads (91.2%). The vast majority of study materials were completed, including 138 of 139 nonverbal communication checklists (99.3%), all 49 oncologist surveys (100%), 40 of 49 parent surveys (81.6%), all 34 oncologist interviews (100%), and 24 of 34 parent interviews (70.6%). Only 1 parent reported participation to be a "very" distressing experience, no parents believed that their level of distress warranted speaking with a psychosocial provider, and the majority of parents (18 of 29 parents; 62.1%) described study participation as "somewhat" or "very" useful to them.Conclusions: The prospective, longitudinal investigation of prognostic communication using a mixed methods approach appears to be feasible and acceptable to clinicians, patients, and families. The study of sensitive content can be accomplished without causing undue participant burden or harm, thereby enabling further advancement of communication research. [ABSTRACT FROM AUTHOR]

Background: High-quality oncology care is marked by skillful communication, yet little is known about patient and family communication perceptions or content preferences. Our study sought to elicit pediatric oncology patient and parent perceptions of early cancer communication to establish whether informational needs were met and identify opportunities for enhanced communication throughout cancer care.Method: An original survey instrument was developed, pretested, and administered to 129 patients, age 10-18 years, and their parents at 3 cancer centers between 2011 and 2015. Statistical analysis of survey items about perceived communication, related associations, and patient/parent concordance was performed.Results: A greater percentage of participants reported "a lot" of discussion about the physical impact of cancer (patients, 58.1% [n = 75]; parents, 69.8% [n = 90]) compared with impact on quality of life (QOL) (patients, 44.2% [n = 57]; parents, 55.8% [n = 72]) or emotional impact (patients, 31.8% [n = 41]; parents, 43.4% [n = 56]). One fifth of patients (20.9% [n = 27]) reported they had no up-front discussion about the emotional impact of cancer treatment. Parents indicated a desire for increased discussion regarding impact on family life (27.9% [n = 36]), long-term QOL (27.9% [n = 36]), and daily activities (20.2% [n = 26]). Patients more frequently than parents indicated a desire for increased physician/patient discussion around the impact on daily activities (patients, 40.3% [n = 52]; parents, 21.7% [n = 28]; P < .001), long-term QOL (patients, 34.9% [n = 45]; parents, 16.3% [n = 21]; P < .001), pain management (patients, 23.3% [n = 30]; parents, 7% [n = 9]; P < .001), physical symptom management (patients, 24% [n = 31]; parents, 7.8% [n = 10]; P < .001), short-term QOL (patients, 23.3% [n = 30]; parents, 9.3% [n = 12]; P = .001), and curative potential (patients, 21.7% [n = 28]; parents, 8.5% [n = 11]; P = .002, P values calculated using McNemar's test).Conclusion: Oncologists may not be meeting the informational needs of many patients and some parents/caregivers. Communication could be enhanced through increased direct physician-patient communication, as well as proactive discussion of emotional symptoms and impact of cancer on QOL. [ABSTRACT FROM AUTHOR]

Background: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death.Methods: Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques.Results: Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents.Conclusions: Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2757-2765. © 2016 American Cancer Society. [ABSTRACT FROM AUTHOR]