Search

1. Describe (and self-reflect on) how clinicians may make assumptions about what prognostic information patients/families want to hear and how they want to hear it, as well as how clinicians may lack comfort in eliciting these preferences directly from patients/families. 2. Recognize a deficit in stakeholder-driven guidance to encourage and support clinicians in provision of person-centered, timely prognostic communication in advanced childhood cancer and other pediatric serious illnesses. In the RIGHTime (Revealing Information Genuinely and Honestly across Time) study, we asked pediatric cancer patients, parents, and oncologists to describe best practices for disclosing prognosis. Preliminary analysis of oncologist data revealed diverse, and often conflicting, recommendations for prognostic communication and infrequent elicitation of patient/parent preferences prior to prognostic disclosure. Provision of honest and timely prognostic information is essential in the care of children with advanced cancer and their families. Many patients and parents wish to hear clear information about prognosis, yet pediatric oncologists often delay or censor poor prognostic disclosure. The RIGHTime study aims to 1) partner with children with cancer, parents, and oncologists to characterize the "right" time and process for prognostic disclosure, 2) use participatory research principles to develop a framework and clinical tool to promote timely, person-centered prognostic communication, and 3) assess the feasibility and acceptability of a clinical tool in a single-arm pilot study. In phase 1 of the RIGHTime study, we interviewed 90 pediatric cancer patients (aged 12-25) across the illness course, parents, and oncologists to elicit stakeholder preferences and recommendations for timing, content, and delivery of prognostic information. We conducted a rapid qualitative approach to identify core themes aligned with the National Cancer Institute's core communication domains. Here we present findings from interviews with a purposive sample of 20 pediatric oncologists from 6 institutions across 5 states. Oncologists described divergent "best practices" for provision of high-quality prognostic communication, with some oncologists advocating for blunt, upfront disclosure and others preferring softened language, avoidance of percentages, or disclosure only when asked directly. Nearly all oncologists emphasized the importance of an individualized approach, with communication tailored to the preferences of patients and families; however, very few oncologists used specific language to preemptively elicit these preferences. Pediatric oncologists hold diverse, and often conflicting, philosophies about the "right" way to disclose prognosis to patients and families. Future analyses will focus on the perspectives of patients and parents, with triangulation of findings and stakeholder-driven conceptual framework analysis to develop an evidence-based clinical tool to support person-centered prognostic disclosure in advanced childhood cancer. Communication and prognostication/Palliative care in oncology [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract 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. [ABSTRACT FROM AUTHOR]

Context: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized, and variables that influence timing of PC integration for children with cancer remain unknown.Objectives: To investigate associations between demographic, disease, treatment, and end-of-life attributes and timing of PC consultation for children with high-risk cancer enrolled on a PC service.Methods: A comprehensive standardized tool was used to abstract data from the medical records of 321 patients treated at a large academic pediatric cancer center, who died between 2011 and 2015.Results: Gender, race, ethnicity, enrollment on a Phase I protocol, number of high-acuity hospitalizations, and receipt of cardiopulmonary resuscitation were not associated with timing of PC involvement. Patients with hematologic malignancy, those who received cancer-directed therapy during the last month of life, and those with advance directives documented one week or less before death had higher odds of late PC referral (malignancy: odds ratio [OR] 3.24, P = 0.001; therapy: OR 4.65, P < 0.001; directive: OR 4.81, P < 0.0001). Patients who received hospice services had lower odds of late PC referral <30 days before death (OR 0.31, P < 0.001).Conclusion: Hematologic malignancy, cancer-directed therapy at the end of life, and delayed documentation of advance directives are associated with late PC involvement in children who died of cancer. Identification of these variables affords opportunities to study targeted interventions to enhance access to earlier PC resources and services for children with high-risk cancer and their families. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

1. Learners will be able to recognize high quality evidence for the importance of bereavement educations amongst medical trainees. 2. Learners will see data on reactions of medical trainees to condolence-writing education and potential impact for their future practice. Bereaved families report high value in ongoing communication with the healthcare team after a loved one's death. Despite this, few training programs incorporate training in the expression of condolences. This pilot study aims to explore whether formal training in condolence expression improves fourth year medical students' comfort and affinity for providing condolences. Following the death of a loved one, bereavement is associated with adverse health outcomes including poor psychological and physical health. Bereavement care that includes consistent and personalized communication post-death has been cited by families as a source of strength during their grief journey. Medical students often care for patients who die, yielding opportunities to participate in bereavement support. Furthermore, grief training has been shown to improve self-perceived knowledge amongst medical professionals but that lack thereof can lead to feelings of helplessness, guilt, and anger. Evidence suggests that condolence expression training is feasible, acceptable, and positively impacts trainee coping and clinical practice. Introducing this education earlier in training may help establish foundational skills for medical students to build upon throughout their careers. Fourth year medical students will participate in a three-part curriculum focused on learning about condolence expression, reflecting on patient losses, and practicing expressing condolences. Students will complete surveys comprised of quantitative and open-ended items at three time points pre-, post- and 6 months after the intervention. Preliminary data show that 68% of students had never received formal condolence training. 100% of participants found the 3-part training useful and 96% stated they intend to express condolences to patient families moving forward. Descriptive statistics will be used to summarize demographic data and trainee experience with patient loss. Qualitative analysis of free-text survey responses and memos will be conducted, and responses categorized to identify themes. Loss, Grief, Bereavement; Resilience / Well being [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1–18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [ P = 0.05] and inpatient PPC billable full time equivalent staff [ P = 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth. [ABSTRACT FROM AUTHOR]

1. To identify the major themes that arise when bereaved parents discuss their spirituality and religious beliefs after the loss of a child. 2. To describe some opportunities for strengthening supports for bereaved parents as they navigate the process of redefining meaning in the face of loss. This qualitative study describes major themes that arise when parents talk about their bereavement experience, including life after death, divine control, and evolution of spirituality and religious life. Exploring the diverse roles religion and spirituality play in parental bereavement highlights gaps in bereavement support and opportunities for future improvement. Religion and spirituality play distinct, integral roles in how many people experience illness, death, and grief. The role of religion and spirituality in the experience of parents grieving the loss of a child to cancer remains underexplored. To describe how bereaved parents talk about religion and spirituality when reflecting on their experiences. This qualitative descriptive study is part of a larger mixed-methods study on bereavement among parents of children who died of cancer. Participants whose children died of cancer one to three years prior to participation completed a one-on-one semi-structured interview about their bereavement experience. Interview transcripts underwent qualitative analysis, including coding, codebook development, memoing, and thematic synthesis. Content pertaining to religion, faith, God, and spirituality were coded as 'Faith' and subsequently underwent in-depth content analysis to identify salient themes. Of 30 parent interviews analyzed, 28 contained content about 'Faith.' Three major narrative themes arose: 1) life after death, 2) divine control, and 3) evolution of spirituality and religious life after loss. There was diversity within each theme, with some parents expressing opposite views on what they found supportive versus challenging. Within the context of these themes, participants discussed practices, like prayer and journaling. A fourth minor theme arose regarding intersections of faith and healthcare. Many bereaved parents describe their journey in terms of spiritual beliefs, questions, and imagery. The healthcare community plays many roles in parents' spiritual narratives throughout their child's illness. After loss, parents described navigating spiritual challenges in isolation from community, with few identifying organized support. Losing a child represented a time where beliefs about purpose and meaning were questioned or reframed. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions. [ABSTRACT FROM AUTHOR]

1. Participants will be able to describe challenges physicians practicing in low-and middle-income countries face, when making treatment decisions for children presenting with advanced cancer, as well as the factors that modify treatment recommendations. 2. Participants will be able to suggest interventions or future studies that will help support physicians and other decision-makers in low-and middle-income countries when determining treatment plans for children presenting with advanced cancer. Physicians in LMICs face challenging cancer-related decision-making, including whether to recommend curative versus non-curative therapies at diagnosis to children presenting with advanced disease. Existing protocols do not consistently provide guidance on how to navigate these decisions. This exploratory work will inform future studies aimed at improving childhood cancer outcomes. Physicians in low- and middle-income countries (LMICs) face challenging cancer-related decision-making, including whether to recommend curative versus non-curative therapies at diagnosis to children presenting with advanced cancer. In this study, we sought to understand physician decision-making approaches and factors that modify treatment recommendations at diagnosis for these children in LMICs. Semi-structured interviews were conducted with physicians who treat children diagnosed with cancer across six World Health Organization (WHO) defined regions. Interviews were conducted using an online platform, audio-recorded, and transcribed. The research team developed a hybrid inductive/deductive codebook utilizing an existing framework describing factors influencing treatment decision-making and applied codes across transcripts. Thematic content analysis focused on decision-making approaches. Thirty-six physicians completed interviews. Preliminary analysis describes decision-making processes with initial treatment recommendations based on static factors considered for all patients, including the diagnosis and disease burden. Many physicians described their inability to offer cure-directed treatment at diagnosis. Treatment recommendations were modified at two points: 1) prior to and 2) during or after the discussion with the patient/family. Dynamic factors that altered an initial recommendation included resource and treatment availability and allocation, treatment affordability, and family alignment or disagreement with the treatment recommendation. Treatment decision-making for children presenting with advanced cancer in LMICs is not linear, and curative treatments cannot always be offered. Revision of treatment guidelines for use in resource-constrained settings which incorporate challenges faced and factors that modify decision-making in the context of advanced disease at diagnosis is required. Future work will explore the perspectives and decision-making approaches of patients/families to inform intervention design to support decision-making, including the provision of upfront non-curative treatment strategies and early integration of palliative care. This abstract was completed on behalf of the CATALYST Study Group. Qualitative and mixed methods research/Pediatrics [ABSTRACT FROM AUTHOR]

1. Participants will be able to describe the intricacies of dignity-centered care in pediatrics and develop strategies to maintain and enhance dignity in the pediatric population. 2. Participants will be able to explain gaps in measurement or assessment tools specific to dignity-centered care in pediatrics and propose strategies to address existing gaps. In this systematic review, we synthesize existing literature to describe how dignity is conceptualized, defined, measured, and assessed in the field of pediatrics. Central themes emerged surrounding communication, autonomy, privacy, and respect, with current scholarship focused on dignity therapy and end of life care. We highlight further opportunities for standardized approaches to advance the science and practice of dignity-centered care. Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy in the context of limited autonomy and evolving developmental stages. While greater literature focuses on dignity in adult populations, the meaning, purpose, and actualization of dignity in the field of pediatrics remains under-explored. We aimed to review existing literature to characterize and report how dignity is conceptualized, defined, measured, and assessed in pediatrics. Following PRISMA guidelines, we conducted a systematic review of the literature searching seven databases from inception until April 2023. Eligible articles were published in English, involved children aged 0-18 years, and prioritized dignity as a central theme with a focus on defining, measuring, or evaluating dignity. The searches yielded a total of 5,482 citations across databases; 44 articles met inclusion criteria, with less than half comprising original research (20/44, 45.5%). Articles spanned broad topics across healthcare (39/44, 88.6%), education (6/44, 13.6%), legal (4/44, 9.1%), and ethics (19/44, 43.2%) domains. Most articles (38/44, 86.4%) included some description of the meaning of dignity in pediatrics, with emergence of salient themes around communication, autonomy, privacy, and respect. Less than half (19/44, 43.2%) of articles included a measurement or assessment of dignity, of which approximately one-third focused on dignity therapy (7/19, 36.8%). A sizable minority of studies centered on palliative/hospice (15/44, 34.1%) and end of life (17/44, 38.6%) concepts. This systematic review of the literature spotlights a relative lack of scholarship on dignity in pediatrics, including lack of consensus on a definition for dignity and actionable opportunities to improve standardized outcome metrics and assessment tools to advance dignity-centered care for children and adolescents. Partnership with pediatrics stakeholders should inform future work to co-design and test novel pediatric-specific interventions to strengthen dignity-centered care for children and families. Existential / Humanities / Spirituality / Religion / Managing Suffering and Distress [ABSTRACT FROM AUTHOR]

Context: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded models improve quality of care and quality of life for patients and families.Objectives: To describe the perspectives and preferences of multidisciplinary clinicians regarding ideal models for PC integration in pediatric cancer care; to introduce clinicians to the theoretical concept of an embedded care model; to empower clinicians in co-design of a new institutional model through collaborative discussion of anticipated benefits and challenges of embedded model implementation.Methods: Trained facilitators conducted 24 focus groups, stratified by discipline and care team. Focus groups were audio-recorded and transcribed for inductive content analysis using MAXQDA software.Results: 174 clinicians participated (25 physicians, 30 advanced practice providers [APPs], 70 nurses, 49 psychosocial clinicians). Clinicians across disciplines verbalized that an embedded PC model would improve access to PC; however, identified benefits and challenges varied by discipline. Benefits included earlier integration of PC (physicians, APPs), normalization of PC as an integral aspect of care by patients/families (nurses, psychosocial), collaboration (physicians, psychosocial clinicians), and communication (APPs, psychosocial). Anticipated challenges included inadequate resources and physician resistance (physicians, APPs, nurses) and multidisciplinary role confusion (APPs, nurses, psychosocial).Conclusion: Pediatric clinicians recognize the potential value of an embedded PC model. Although some concepts overlapped, multidisciplinary clinicians offered unique beliefs, highlighting the importance of including representative perspectives to ensure that pediatric PC models align with priorities of diverse stakeholders. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including nine from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs. [ABSTRACT FROM AUTHOR]

1. Describe the importance of outpatient PPC and current literature. 2. Describe the prevalence and clinic structure and workflow of OPPC services at freestanding children's hospitals with established inpatient PPC programs. Inpatient pediatric palliative care (PPC) programs are increasingly expanding into the outpatient setting. However, limited information is available regarding the structure, workflow, and operationalization of these programs. In 2019, the Center to Advance Palliative Care and National Palliative Care Research Center reported 48 freestanding children's hospitals with specialty PPC programs. As part of a larger study on outpatient pediatric palliative care (OPPC) services, a PPC liaison at each hospital was asked to complete an electronic survey regarding clinic structure and workflow as well as metrics of successful OPPC implementation. Of the 36 (75%) respondents, 28 children's hospitals (78%) provided OPPC in a clinic setting. Most OPPC clinics are located within a subspecialty clinic (81%) and managed by PPC (69%) and/or subspecialty (58%) staff. Respondents reported utilizing various clinic models including floating (62%), freestanding (50%), and/or embedded (39%) clinic models. Fifty-two percent of PPC clinicians restricted their schedule to half-day clinics, offering a median of 2.5 half-day clinics per week. OPPC clinic schedules consisted of two initial consultations and one to five follow-up appointments per week with a no-show rate of 11%-25%. Sixty-minute and 45-minute visits were allotted for initial consultations and follow-up appointments, respectively. Respondents reported billing based on time (92%) and/or complexity (46%). Most respondents felt their OPPC program design and workflow allowed their team to provide high-quality care (76%), while only about half of respondents felt their program design and workflow was successful (52%) and promoted team resilience (48%). Hospital-based OPPC clinic operationalization varies remarkably across the nation, with programs often utilizing more than one clinic model simultaneously. It is unclear how various clinic structures and workflow practices influence OPPC metrics of success. [ABSTRACT FROM AUTHOR]

1. Identify and give examples to illustrate factors influencing physicians in LMICs when deciding how to balance curative/noncurative treatment options for children with advanced/incurable cancer at the time of diagnosis. 2. Reflect on the challenges faced by physicians around decision making in resource-constrained settings as compared to those in participants' practice settings. The global burden of childhood cancer lies predominantly in LMICs (low- and middle-income countries), where outcomes are inextricably linked to local and regional economic and social contexts, including available healthcare infrastructure and psychosocial support. Many children present with advanced or incurable disease, and access to palliative care is scarce. In this study, we sought to identify factors considered by LMIC physicians when deciding how to balance curative and noncurative treatment options for children presenting with advanced or incurable cancer at the time of diagnosis. Using a community-engaged research approach, we invited a global panel of pediatric oncologists to participate in four sequential focus groups. In two initial focus groups, participants were asked to identify factors related to the disease, decision maker, and contextual factors impacting care. Content analysis informed the development of a visual model and semistructured interview guide to further probe these topics with LMIC physicians, which the working group reviewed together in the subsequent two focus groups. Eleven pediatric oncologists representing all WHO regions participated. Participants identified numerous factors influencing decision making unique to LMICs, including the ability to access diagnostic tools and treatment interventions, lack of established referral pathways, and financial compromises to treat a child at expense of family health, and participants confirmed these major categories. Participants recognized that intensive treatment often resulted in toxicities and poor outcomes, yet they defaulted to offering curative therapy due to perceived lack of palliative alternatives and lack of direction from available guidelines. Member checking with the working group yielded consensus on semistructured interview prompts for future work. Oncologists in LMICs face unique challenges that influence treatment decision making. Future interview findings will inform development of clinical practice guidelines and educational interventions that leverage core palliative care concepts to better support LMIC oncologists balancing curative and noncurative treatment approaches. [ABSTRACT FROM AUTHOR]

Context: Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and best practices for offering and creating legacy interventions remain poorly understood.Objectives: To characterize bereaved parents' perspectives on the value of legacy activities; to describe parent recommendations for optimizing provision of legacy activities by child life specialists and music therapists.Methods: In this qualitative study, a purposive sample of 19 bereaved parents of children who died from cancer participated in semi-structured interviews. Interviews were audio-recorded, transcribed, and analyzed inductively using content analysis to identify key concepts and emerging themes.Results: Analysis of transcripts revealed bereaved parent insights and recommendations across three core themes: 1) the value of legacy items and interventions; 2) the practical roles, uses, and functions of legacy items, and 3) best practices for offering legacy interventions. Bereaved parents sought meaning and purpose in abstract and concrete manifestations of legacy. Parents often used legacy items in specific ways to promote emotional expression and process their grief. Communication, timing, and creativity significantly influenced parent perceptions of legacy-building. Parents recommended individualized assessments to optimize provision of legacy interventions.Conclusion: Bereaved parents emphasized the meaningfulness of legacy-building activities and the need for an individualized approach when offering these interventions. Future research should explore the perspectives and recommendations of patients and siblings on legacy activities. [ABSTRACT FROM AUTHOR]