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Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved families. Yet formal training in expressing condolences is currently lacking. Methods: We applied Kern's six step approach to develop, implement, and evaluate an innovative curriculum aimed at increasing pediatric residents' comfort levels with and practice of condolence expression. Results: Twelve residents participated in the pilot study. Quantitative and qualitative data demonstrate that residents' comfort levels with expressing condolences increased after implementation of the curriculum and that residents appreciated and benefitted from receiving this education. Conclusion: We successfully developed and piloted a condolence expression curriculum that was well received by pediatric residents and led to increased comfort level with expressing condolences. Research is ongoing to determine the full impact of this curriculum.

Background: Most patients with cancer and their caregivers desire honest, clear prognostic communication, yet oncologists often disclose prognosis inconsistently. Prognostic communication becomes even more challenging when disease progression is unclear or equivocal. Presently, oncologist approaches for discussing uncertain disease findings are poorly understood., Methods: In this prospective, longitudinal study, we audio-recorded serial disease reevaluation conversations between children with high-risk cancer, their families, and their primary oncologists over 24 months and conducted content analysis at recorded timepoints when oncologists categorized disease progression as equivocal., Results: Of the 265 medical discussions recorded across the illness course for 33 patient-parent dyads, a total of 40 recorded discussions took place at equivocal timepoints, comprising > 500 min of medical dialogue. Prognosis talk encompassed < 3% of dialogue and was absent in nearly half of equivocal discussions (17/40, 42.5%). Curability statements were identified in only two conversations. Inductive content analysis of dialogue revealed four distinct patterns for communicating equivocal disease status: (1) up-front reassurance, (2) softening the message, (3) describing possible disease progression without interpretation, (4) expressing uncertainty without discussing the bigger picture., Conclusion: Oncologists rarely discuss prognosis with children with high-risk cancer and their families at timepoints when disease progression is not definitive. Formal guidance is needed to better support oncologists in navigating uncertainty while sharing honest, person- and family-centered information about prognosis., (© 2022. The Author(s).)

Objective: Participation in qualitative research, particularly analysis of recorded medical dialogue, offers real-time, longitudinal immersion that can strengthen clinical trainee communication skills. The study objective was to explore how qualitative research participation impacts clinical trainees' self-perceived communication skills development and practice., Methods: In this study, a 17-member multidisciplinary working group of child life specialists, advanced practice providers, undergraduate/medical students, residents, fellows, attending physicians, social scientists, and career researchers with recent qualitative and communication research experience assembled to discuss this topic using a structured discussion guide. Content analysis was used to identify concepts and themes., Results: Three key themes characterizing the impact of qualitative research participation on aspiring clinicians' communication skills development and practice arose - the 3Cs: (1) C onnection, therapeutic alliance, and accompaniment; (2) C larity and prognostic communication; (3) C ompassion, empathy, and understanding. Participants emphasized that qualitative research learning improved their understanding of patient/family lived experiences, preparing them for future clinical encounters, strengthening their emotional intelligence, and promoting self-care, resilience, and professional affirmation., Conclusions: Immersion in clinical communication through participation in qualitative research is an under-utilized resource for supporting clinical trainees in communication skills development., Innovation: The process of collaborative knowledge production through the collective exploration of an a priori question related to group members' collective experiences is methodologically innovative. Further, re-thinking qualitative research participation as an underutilized educational opportunity is pedagogically novel, and leaders in medical education and qualitative research should collaborate to realize the potential of this teaching tool., Competing Interests: None., (© 2022 The Authors.)

Purpose of Review: This manuscript aims to describe evidence-based best practices to guide clinicians in communicating with pediatric patients and their families about clinical trial enrollment., Recent Findings: The standard paradigm for discussing clinical trial enrollment with pediatric oncology patients and their families inconsistently enables or facilitates true informed consent. Evidence exists to suggest that adopting a shared decision-making approach may improve patient and family understanding. When navigating communication about clinical trials, clinicians should integrate the following evidence-based communication approaches: (1) extend dialogue about clinical trial enrollment across multiple conversations, allowing families space and time to process information independently; (2) use core communication skills such as avoiding jargon, checking for understanding, and responding to emotion. Clinicians should consider factors at the individual, team, organizational, community, and policy levels that may impact clinical trial communication with pediatric cancer patients and their families. This article reviews learnable skills that clinicians can master to optimize communication about clinical trial enrollment with pediatric cancer patients and their families., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Purpose: The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional collaborators identified the need to disseminate country-specific study results locally and provide policy recommendations to inform stakeholders., Methods: The Assessing Doctors' Attitudes on Palliative Treatment report was developed with Eurasian and St Jude pediatric palliative care and oncology experts to summarize study findings and deliver country-level data to local stakeholders. In parallel, an assessment was developed to explore how regional collaborators intend to use the report to improve local advocacy and dissemination of research findings. The country report and assessment were translated to English, Russian, and Mongolian., Results: Country-specific two-page reports display study findings on pediatric palliative care education, access to pediatric palliative care services, and barriers to and timing of integration with cancer care, alongside clinical and policy recommendations. These reports were distributed to collaborators in 11 countries. Assessment results (N = 30) demonstrated that regional collaborators planned to distribute the report to institutional and government stakeholders, aiming to increase access to pediatric palliative care services (77%), establish a community-based palliative care network (70%), and increase opportunities for specialization (70%)., Conclusion: We describe the development of an evidence-based advocacy tool to inform local health and education policy in Eurasia. This summary report of study findings, translated to local languages and adapted to a broader audience, is currently used to advocate for greater access and quality of palliative care for children with cancer. This work may serve as the basis for future dissemination efforts of scientific research., Competing Interests: Anna VinitskyStock and Other Ownership Interests: BioMarin, MustangBio, Baxter, Johnson & Johnson/Janssen, West PharmaceuticalResearch Funding: SpringWorks Therapeutics (Inst) Catherine G. LamStock and Other Ownership Interests: PharmaJet (I)Consulting or Advisory Role: Sanofi (I), Jazz Pharmaceuticals (I), Servier (I), BTG (I), Shire (I), EUSA Pharma (I)Speakers' Bureau: Servier (I), Sanofi (I)No other potential conflicts of interest were reported.

Objectives: To describe the tensions experienced by clinicians and psychosocial professionals that affect communication in pediatric oncology., Methods: Ten focus groups with nurses, nurse practitioners, physicians, and psychosocial professionals at 2 US institutions. We analyzed transcripts using thematic analysis, assessing tensions experienced when communicating with parents., Results: We identified 5 themes of tensions, defined as challenges experienced when clinicians and psychosocial professionals are trying to achieve multiple conflicting goals or obligations while communicating: (1) Supporting parental hopes while providing honest opinions and information; (2) disclosing all possible outcomes while avoiding the creation of new worries or uncertainties; (3) building relationships while maintaining personal boundaries; (4) disclosing sensitive information while adhering to professional role and perceived authority; (5) validating parental beliefs or decisions while fulfilling obligation for honesty. Some tensions represented conflicts between different communication goals. Others represented conflicts between a communication goal and another obligation., Conclusion: Clinicians and psychosocial professionals experience tensions that affect communication with parents in pediatric oncology. Some tensions might be addressed with interventions or education. Others will require further analysis to provide sufficient guidance to clinicians., Practice Implications: Unaddressed tensions might lead to poor communication and clinician burnout. Future work should explore solutions to these tensions., (Copyright © 2021 Elsevier B.V. All rights reserved.)

Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied., Objectives: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression., Methods: A cross-sectional, mixed-methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 Accreditation Council for Graduate Medical Education-accredited programs representing varying sizes and geographic regions., Results: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet very very few had formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter; 85% had never made a condolence phone call; and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families., Conclusions: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied., Methods: We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches., Results: One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions., Conclusions: Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families., (© 2021. The Author(s), under exclusive licence to Springer Nature Limited.)

Context: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care., Objective: Gaining understanding of the professional and personal experiences of PPC providers on a global scale during COVID-19 is essential to improve clinical practices in an ongoing pandemic., Methods: The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus Survey-Global survey was designed and distributed to assess changes in PPC practices resulting from COVID-19. Quantitative and qualitative data were captured through the survey., Results: One hundred and fifty-six providers were included in the final analysis with 59 countries and six continents represented (31% from lower- or lower middle-income countries). Nearly half of PPC providers (40%) reported programmatic economic insecurity or employment loss. Use of technology influenced communication processes for nearly all participants (91%), yet most PPC providers (72%) reported receiving no formal training in use of technological interfaces. Respondents described distress around challenges in provision of comfort at the end of life and witnessing patients' pain, fear, and isolation., Conclusions: PPC clinicians from around the world experienced challenges related to COVID-19. Technology was perceived as both helpful and a hinderance to high quality communication. The pandemic's financial impact translated into concerns about programmatic sustainability and job insecurity. Opportunities exist to apply these important experiential lessons learned to improve and sustain care for future patients, families, and interdisciplinary teams., Article Summary: This original article describes the impact of the COVID-19 pandemic on pediatric palliative care clinicians from 59 countries including financial losses, use of virtual communication modalities, and the respondents' distress in provision of comfort at the end of life., Competing Interests: Declaration of Competing Interest The authors have no conflicts of interest for this article to disclose., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown., Objective: We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains., Methods: We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization., Results: We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication., Conclusion: SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Most hospice nurses across Tennessee, Arkansas, and Mississippi report significant discomfort with provision of pediatric palliative and hospice care (PPHC). How best to target and modify variables to increase nurse comfort levels is not well understood., Objectives: To determine whether modifiable variables are associated with increased hospice nurse comfort with PPHC provision in the community., Methods: A cross-sectional survey was developed, pilot tested, and distributed to hospice nurses across a tristate region to assess nurse training experiences and comfort with PPHC provision. Targeted subanalyses were conducted to investigate associations between nurse comfort level and clinical, training, and patient frequency variables., Results: A total of 551 respondents representing 71 hospices across Tennessee, Arkansas, and Mississippi completed surveys. Hospice nurse comfort with provision of care to children was statistically significantly associated with exposure to prior PPHC clinical experiences (P < 0.001), receipt of formal pediatric PPHC training (P < 0.001), and higher hospice-level (P = 0.01) and individual-level frequency of PPHC provision (P < 0.001). PPHC clinical experience was the most impactful variable with respect to comfort with overall and end-of-life PPHC provision; formal training was the most impactful variable with respect to comfort with management of severe symptoms at the end of life., Conclusion: Modifiable variables exist that are readily targetable to improve hospice nurse comfort with PPHC provision. These findings should inform the development and investigation of clinical and educational interventions to empower both nurses and hospices to optimize the provision of quality care to children with serious illness and their families in the community., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Hematopoietic cell transplantation (HCT) affords curative potential for high-risk patients but also carries risk of morbidity and mortality. Early palliative care (PC) integration can aid in supporting patients and families, fostering goal-directed care, and maximizing quality-of-life throughout. However, little is known about patient and family hopes, worries, goals, or values in pediatric HCT. Through retrospective review of pretransplant PC consultations, this study sought to provide insights from this unique patient population. Across 100 initial PC encounters conducted between December 2015 and March 2018, patient and caregiver responses to five targeted questions were extracted and analyzed. Data analysis revealed themes related to patient quality-of-life, caregiver/parent role, hopes, and worries. The most commonly identified thematic responses within each topic area were patient quality-of-life "electronics/entertainment" (49%), caregiver/parent role "doing right by my child" (58%), hopes "cure" (83%), worries "potential side effects" (43%), other spirituality (34%), and resiliency (29%). These findings provide an understanding of the values, goals, priorities, hopes, and fears experienced by pediatric HCT patients and their families, which may help inform a targeted approach to improve communication and overall care throughout transplantation. Variability was noted, underscoring the importance of fostering flexible, patient/family-centered communication beginning in the pretransplant period.

Background: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are not well known., Aim: To describe the types of paediatric-specific training received and educational content preferred by hospice nurses., Design: Population-level dissemination of a cross-sectional survey with qualitative analysis of open-ended survey items., Setting/participants: Nurses from 71 community-based hospice organizations across 3 states completed the survey., Results: An open-ended response was provided by 278/551 (50.5%) survey respondents. A total of 55 respondents provided 58 descriptions of prior paediatric-specific training, including a formal 2-day course ( n  = 36; 65.5%), on-the-job education ( n  = 13, 23.6%), online training ( n  = 5, 9.1%), nursing school ( n  = 2, 3.6%) and paediatric advanced life support courses ( n  = 2, 3.6%). A total of 67 respondents described 74 hospice-led educational efforts, largely comprised of a 2-day course ( n  = 39; 54.2%) or provision of written materials ( n  = 11; 15.3%). A total of 189 respondents described 258 preferences for paediatric-specific training, with nearly half ( n  = 93; 49.2%) requesting 'any' or 'all' types of education and the remainder requesting education around medication use ( n  = 48; 25.4%), symptom assessment/management ( n  = 32; 16.9%), pain assessment/management ( n  = 28; 14.8), communication ( n  = 29; 15.3%) and psychosocial assessment/management ( n  = 28; 14.8)., Conclusions: Hospice nurses self-report inadequate exposure to educational resources and programs, in conjunction with a strong desire for increased paediatric-specific training. Identification of targetable gaps should inform the development of educational resources, policies and other supportive interventions to improve delivery of care to children and families in the community.

Context: Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs., Objective: To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community., Methods: A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region., Results: A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting <5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains., Conclusion: Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community., (Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Effective communication is essential to the practice of pediatric oncology. Clear and empathic delivery of diagnostic and prognostic information positively impacts the ways in which patients and families cope. Honest, compassionate discussions regarding goals of care and hopes for patients approaching end of life can provide healing when other therapies have failed. Effective communication and the positive relationships it fosters also can provide comfort to families grieving the loss of a child. A robust body of evidence demonstrates the benefits of optimal communication for patients, families, and healthcare providers. This review aims to identify key communication skills that healthcare providers can employ throughout the illness journey to provide information, encourage shared decision-making, promote therapeutic alliance, and empathically address end-of-life concerns. By reviewing the relevant evidence and providing practical tips for skill development, we strive to help healthcare providers understand the value of effective communication and master these critical skills., Competing Interests: The authors have no conflict of interest to declare.

As therapeutic and supportive care interventions become increasingly effective, growing numbers of childhood and adolescent cancer survivors face a myriad of physical and psychological sequelae secondary to their disease and treatment. Mental health issues, in particular, present a significant problem in this unique patient population, with depression affecting a sizable number of childhood and adolescent cancer survivors. Multiple key determinants impact a survivor's risk of developing depression, with variables traversing across biologic, individual, family, community, and global levels, as well as spanning throughout the life course of human development from the preconception and prenatal periods to adulthood. A multi-level life course conceptual model offers a valuable framework to identify and organize the diverse variables that modulate the risk of developing depression in survivors of childhood and adolescent cancer. This review describes the first multi-level life course perspective applied to development of depression in childhood and adolescent cancer survivors. This conceptual framework may be used to guide the investigation of mental health interventions for SCACs to ensure that key determinants of depression occurrence are adequately addressed across various levels and throughout the life trajectory.

Context: Workforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable., Objectives: To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC., Methods: PubMed ® and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity., Results: Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed., Conclusions: Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value., (Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Children's Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child. This article describes the components of a parent-derived bereavement program and presents early results on the effects of specific program components. The program, under the leadership of the bereavement coordinator, includes clinical and supportive interventions offered throughout the grief journey, parent-created bereavement support materials, and opportunities for parents and families to participate in research, quality improvement initiatives and educational interventions. Parents report that services and interventions provided through the bereavement program are beneficial to families after the death of their child. In addition, both health care providers and bereaved parents report that participation in educational interventions positively impacts their experiences as clinicians and parents, respectively. The innovative nature of this parent-driven, comprehensive bereavement program may serve as a paradigm for the development of bereavement programs in the fields of pediatrics, palliative oncology and hospice and palliative medicine., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)