Search

Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016–2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Results: Fifty-six patients were seen through 181 telepalliative visits. Demographics: Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making. [ABSTRACT FROM AUTHOR]

Background: While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This research focuses on the safety and feasibility of a home transfusion program.Methods: This is a case series of patients between 0 and 18 years diagnosed with advanced malignancy or incurable chronic conditions and eligible to Pediatric Palliative Care who received home platelet or packed red cell transfusions. For all patients, we recorded adverse events such as acute hemolytic reactions, allergic reactions, or any emergency condition requiring hospital admission, equipment failure, blood product transport or storage errors, errors in patient identification, and personnel safety issues. We explored parental satisfaction with a Likert-type questionnaire and short open questions.Results: We reviewed 101 transfusion procedures for six patients in Pediatric Palliative Care performed by the Regional Pediatric Palliative Care network between 2014 and 2020. We did not report any adverse effects. Families reported satisfaction and a sense of safety and positively evaluated the opportunity of having transfusion at home to minimize the disruption in everyday life. The cost analysis resulted in a consistent saving for the Regional Health System.Conclusion: This study supports the safety and feasibility of home transfusion in Pediatric Palliative Care. [ABSTRACT FROM AUTHOR]

Context: Parents of patients with a serious illness experience psychological distress, which impacts parents' wellbeing and, potentially, their ability to care for their children. Parent psychological distress may be influenced by children's symptom burden and by families' financial difficulty.Objectives: This study examined the associations among parent psychological distress, parent-reported patient symptoms, and financial difficulty, seeking to determine the relative association of financial difficulty and of patient symptoms to parent psychological distress.Methods: Cross-sectional study of baseline data for 601 parents of 532 pediatric palliative care patients enrolled in a prospective cohort study conducted at seven US children's hospitals. Data included self-reported parent psychological distress and parent report of child's symptoms and family financial difficulty. We used ordinary least squares multiple regressions to examine the association between psychological distress and symptom score, between psychological distress and financial difficulty, and whether the degree of financial difficulty modified the relationship between psychological distress and symptom score.Results: The majority of parents were moderately to severely distressed (69%) or severely distressed (17%) and experienced some degree of financial difficulty (65%). While children's symptom scores and family financial difficulty together explained more of the variance in parental psychological distress than either variable alone, parental distress was associated more strongly, and to a larger degree, with financial difficulty than with symptom scores alone.Conclusions: Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Future work should examine these relationships longitudinally, and whether interventions to improve symptom management and ameliorate financial difficulties improve parental outcomes. [ABSTRACT FROM AUTHOR]

Purpose of Review: To summarize pediatric palliative care (PPC) research from 2016 to 2021 as it intersects with pediatric oncology and hematopoietic stem cell transplantation (HSCT). Recent Findings: Children and adolescents with cancer who receive PPC have improved quality of life (QOL), symptom burden, advance care planning discussions, rates of hospice enrollment, home deaths, and receive less intensive therapy at the end-of-life (EOL). Parents report improved QOL and preparation for EOL. Though barriers to PPC utilization exist, new clinical models, oncology team education, and growing family awareness are leading to culture change. Summary: PPC within pediatric oncology is considered a standard of care. Families are accepting of PPC, as most wish for their children to live as well as possible for as long as possible. Although PPC remains underutilized, PPC should work collaboratively with pediatric oncology and HSCT teams to improve QOL and EOL outcomes of patients with cancer and their families. [ABSTRACT FROM AUTHOR]

Background: Italy was the first European country to experience a massive outbreak of Sars-coV-2 in March 2020. Severe measures were introduced to face the pandemic, significantly impacting all healthcare services, including pediatric palliative care (PPC) networks. We investigated how the Covid-19 pandemic modified the provision of PPC services in Friuli Venezia Giulia, Italy. Both the acute and long-term impacts on the families were addressed. Methods: We administered a retrospective three-sections online questionnaire to the eligible families assisted by our regional PPC network. Inclusion criteria were: child needing specialistic PPC, adequate knowledge of the Italian language, being in charge of the PPC regional network of Friuli Venezia Giulia from February 1, 2020. The three sections examined the same issues in different periods: the pre-covid period (until February 29, 2020), the lockdown period (March 1, 2020, to April 30, 2020), and the post-lockdown period (May 2021). Results: Twelve patients were included. During the lockdown period, 54.6% of children had to stop physiotherapy sessions, while, among those who continued, 80.0% experienced a reduction in the sessions' frequency. In the post-lockdown period, 45.5% of children did not have physiotherapy as often as before the pandemic onset. Overall, the access to medical visits during the lockdown and after its end was significantly reduced (p = 0.01). The level of support perceived by the families descended from grade 3 (intermediate) in the pre-covid period to 2 (low) during the lockdown (p < 0.05) and returned to grade 3 in the post-lockdown period. Conclusion: The COVID-19 pandemic and the related restrictions impacted the families and caused a transitory contraction of the perceived support. The most significant change was reduced access to medical visits and physiotherapy, which lasted over a year after the start of the pandemic. [ABSTRACT FROM AUTHOR]

The question of death, and what happens after, is a query with no certain answer. Philosophers, scientists, artists, poets, and healthcare providers have grappled with the question of death and how best to answer it. Children with life-limiting illnesses (LLI) who face death in childhood are in a unique situation where their typical sources of information (i.e., the adults in their lives) may not be able to come up with a suitable answer when asked what happens when we die. As Plato stated, there is an inner child in all of us who is not totally convinced by assurances of an afterlife. What children with LLI understand of death and dying is not always easily conveyed in everyday language but can be revealed in their artistic forms of expression. Artwork, poetry, and stories seem to carry the unintelligibility of death so that both children and adults may cope with it. [ABSTRACT FROM AUTHOR]

Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs).Objectives: To evaluate symptoms and suffering at EOL for children with noncancer, noncardiac CCCs as well as parental distress related to child suffering.Methods: This study is a secondary data analysis of a cross-sectional, single-center survey of bereaved parents of children with CCCs who died between 2006 to 2015. The primary outcome was parent-reported child suffering in the final two days of life.Results: Among 211 eligible parents contacted for participation, 114 completed the survey, and 99 had complete primary outcome data (participation rate 47%). Most children had congenital/chromosomal (42%) or progressive central nervous system (22%) conditions. Twenty-eight percent of parents reported high child suffering in the final two days of life. Parents reported that pain and difficulty breathing caused the greatest suffering for children and distress among themselves. Some parents also reported distress related to uncertainty about child suffering. Parents were less likely to report high child suffering if they were confident in knowing what to expect when their child was dying (AOR 0.20; 95% CI 0.07-0.60) or felt prepared for medical problems at EOL (AOR 0.12; 95% CI 0.04-0.42).Conclusion: Nearly one-third of parents of children with CCCs report high suffering in their child's final days of life. Parent preparedness was associated with lower perceived child suffering. Future research should target symptoms contributing to parent and child distress and assess whether enhancing parent preparedness reduces perceived child suffering. [ABSTRACT FROM AUTHOR]

Context and Objectives: Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program development and quality improvement (QI) formed a healthcare learning collaborative network entitled the Pediatric Palliative Improvement Network (PPIN).Methods: The primary drivers identified were 1) Feasibility of a national learning network demonstrated through the completion of one small QI project, 2) Standard education in QI methodology and 3) Salient pediatric palliative care operational, clinical and satisfaction metrics clearly defined.Results: PPIN now includes146 members representing 51 organizations. In 2019 the group completed a national collaborative QI project focused on pain assessment at the time of initial consult, demonstrating a national increase in pain assessment from 75.8% to >90% over 12 months. PPIN has hosted two national QI workshops training more than 50 PPC clinicians in QI, with a 2-hour webinar provided in 2020 due to COVID. Monthly calls since 2017 provide QI methods "refreshers", share local works in progress, and provide infrastructure for future collaborative projects.Conclusions: PPIN has become a sustainable organization which improves the quality of PPC through focus on national QI methods training, successful collaborative projects, and the creation of a learning and peer support community with regular calls. With the advent of the Palliative Care Quality Collaborative in 2020, PPIN provides critical educational and organizational infrastructure to inform ongoing quality efforts in PPC, now and in the future. [ABSTRACT FROM AUTHOR]

Purpose: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded PPO clinic where no formal consultation triggers exist. Methods: Patients with cancer between 0 and 25 years at diagnosis who experienced a high-risk event between July 2015 and June 2018 were eligible. Demographic, disease, and PPC information were obtained. Descriptive statistics and logistic regression were used to assess likelihood of receiving PPC services by race/ethnicity. Results: Of 426 patients who experienced a high-risk event, 48% were non-Hispanic White, 31% were non-Hispanic Black, 15% were Hispanic of any race, and 4% were non-Hispanic Asian. No significant differences were found between race/ethnicity and age at diagnosis/death, sex, and diagnosis. PPC consultation (p = 0.03) differed by race. Non-Hispanic Black patients were 1.7 times more likely than non-Hispanic White patients to receive PPC after adjustment (p = 0.01). White patients spent less days in the hospital in the last 90 days of life (3.0 days) compared with Black (8.0), Asian (12.5), or Hispanic patients (14.0, p = 0.009) Conclusion: Disparities exist in patients receiving pediatric oncology and PPC services. Cultural tendencies as well as unconscious and cultural biases may affect PPC referral by race and ethnicity. Better understanding of cultural tendencies and biases may improve end-of-life outcomes for children and young adults with cancer. [ABSTRACT FROM AUTHOR]

Context: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care.Objectives: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals.Methods: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention.Results: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice.Conclusion: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable. [ABSTRACT FROM AUTHOR]

Background: The quality of end‐of‐life (Q‐EOL) care is influenced by various factors such as resources for palliative care (PC). We introduced a multi‐professional expert team (MET) in 2014, which provides home‐based care for children and adolescents with incurable cancer. This study investigated the impacts of the outreach activities by the MET on Q‐EOL care of pediatric oncology patients. Methods: This observational study retrospectively examined 112 patients receiving end‐of‐life care between 1989 and 2018 at a pediatric cancer center in Japan. Some of the indicators of Q‐EOL care before and after the introduction of the outreach activities by the MET were compared. The subjects were 92 in pre‐MET and 20 in post‐MET periods. Results: The median number of days for which the patients stayed at home during the final seven or 30 days were significantly prolonged in the post‐MET period (0.0 vs 1.5 days, P = 0.020, 3.0 vs 12.0 days, P = 0.042). The change was more significant in hematologic malignancies than solid and central nervous system tumors. Patients receiving longer PC before their deaths could stay at home longer during the last 7 days. The ratio of patients receiving PC for more than 2 months was significantly increased in post‐MET period (60.9 vs 90.0%, P = 0.014). More patients also greeted their deaths at home in the post‐MET period (3.3 vs 25.0%, P < 0.001). Conclusions: The activities of the MET transformed the end‐of‐life care of children and adolescents with incurable cancer. Earlier transitions to PC from curative treatment were associated with longer home‐based care and more deaths at home. [ABSTRACT FROM AUTHOR]

Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.

The adequate assessment and management of pain remains a challenging task in the Pediatric Intensive Care Unit (PICU). Our goal is to describe how pain is assessed and managed in PICUs around the world and to examine how human and material resources impact achievement of this goal. An international multicenter cross-sectional observational study was designed with the participation of 34 PICUs located in urban, suburban, and rural areas of 18 countries. We evaluated how PICUs around the world assessed and managed pain according to the Initiative for Pediatric Palliative Care recommendations, and how human and material resources impacted achievement of this goal. Data was collected for this study from 2016 to 2018 using questionnaires completed by medical doctors and nurses. In this paper, we focus on the indicators related to how pain is managed and assessed. The average achievement of the goal of pain relief across all centers was 72.2% (SD: 21.1). We found a statistically significant trend of more effective pain management scores, routine assessment, proper documentation, and involvement of pain management experts by increasing country income. While there are efforts being made worldwide to improve the knowledge in pain assessment and management, there is a lack of resources to do so appropriately in low-middle-income countries. There is a mismatch between the existing guidelines and policies, which are mainly designed in high income countries, and the resources available in lower resourced environments.

Abstract Background Pediatric palliative care (PPC) addresses the physical and psychological needs of children suffering from life-limiting diseases. To define prevention and educational plans and to properly allocate resources, a precise estimation of the PPC burden is required. Objectives To estimate the current number of children requiring PPC in Italy, useful to assist policy-makers and healthcare bodies in the organization and allocation of PPC resources. Methods Literature data, The Global Atlas of Palliative Care at the End of Life and Italian national databases have been consulted. Results According to our estimation, at present, a total of 20,540–32,864 children in Italy require PPC (34–54 children/100,000 inhabitants) of whom 18 children/100,000 inhabitants require specialized PPC. Conclusions The present work is a fundamental tool to be used by the institutions, the local networks of PPC and the health programmers when formulating organizational models and care plans consistent with the actual need for PPC.

Background: Medical cannabis may be a useful tool for managing treatment-resistant epilepsy and chronic pain, which affect many patients in pediatric palliative care (PPC); however, little evidence is available in this setting. Case presentation: We aimed to describe a clinical experience in a setting where high-level evidence may not be obtained. We report our clinical experience in a pediatric palliative care department in Italy. Caregivers reported changes in intensity and frequency of pain and epilepsy events. Six patients received a titrated plant extract of cannabis sativa for 1 year. Only mild and transient adverse events occurred: drowsiness, euphoria, restlessness and tachycardia; the resolution was either spontaneous or obtained by modifying the administration schedule. Treatment was never discontinued. No overdoses occurred. All patients experienced seizures during the pre-treatment observation period, and obtained a reduction in seizure frequency, although with variable extent while receiving cannabis. In addition, a benefit on pain was observed, based on the caregiver's evaluation, and a reduction of analgesic use. Conclusion: Our experience suggests that a titrated plant extract preparation of medical cannabis may be useful to control treatment-resistant pain and epilepsy in PPC patients. [ABSTRACT FROM AUTHOR]

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents. [ABSTRACT FROM AUTHOR]

Palliative care is not usually associated with childhood and adolescence. Nevertheless, in German-speaking Europe alone, more than 50 000 children live with life-shortening illnesses, and about 5000 children die every year. Palliative care for children and adolescents (PPC) is an attitude that must not be forced on anyone, but must be lived; and, in the case of complex-chronic diseases often over many years. A successful and sustainable implementation of PPC is therefore based on an appreciative collaboration between different teams and the affected families, true to the quadriga presented here of comprehensive symptom control with curiosity, patience, activity and humility. Necessary basics such as the care plan, interprofessional home visits and the round table, plus 24-hour accessibility, are here presented, as well as a triage technique and the advanced care management. [ABSTRACT FROM AUTHOR]

To complete the curriculum, learners rotating through a pediatric palliative care service are asked to submit a piece of reflective writing. Here, we share an edited version of the narrative one student submitted, accompanied by a brief consideration of the numerous benefits of reflective writing for medical trainees (including improved communication and professionalism skills, as well as increased levels of empathy and comfort when facing complex or difficult situations). Additionally, we describe how brief personal narratives may serve to reduce common misconceptions and confusion by educating patients, families, and clinicians about the reality and the role of pediatric palliative care. [ABSTRACT FROM AUTHOR]

Copyright of L'Infermiere is the property of IPASVI - Italian Nursing Association and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

BACKGROUND: Racial and ethnic minority children with cancer disproportionately receive intensive care at the end of life (EOL). It is not known whether these differences are goal‐concordant or disparities. The authors sought to explore patterns of pediatric palliative care (PPC) and health care utilization in pediatric oncology patients receiving subspecialty palliative care at the end‐of‐life (last 6 months) and to examine goal‐concordance of location of death in a subset of these patients. METHODS: This was a retrospective cohort study of pediatric oncology patients receiving subspecialty palliative care at a single large tertiary care center who died between January 2013 and March 2017. RESULTS: A total of 115 patients including 71 White, non‐Hispanic patients and 44 non‐White patients (including 12 Black patients and 21 Hispanic patients) were included in the analytic cohort. There were no significant differences in oncologic diagnosis, cause of death, or health care utilization in the last 6 months of life. White and non‐White patients had similar PPC utilization including time from initial consult to death and median number of PPC encounters. Non‐White patients were significantly more likely to die in the hospital compared to White patients (68% vs 46%, P =.03). Analysis of a subcohort with documented preferences (n = 45) revealed that 91% of White patients and 93% of non‐White patients died in their preferred location of death. CONCLUSIONS: Although non‐White children with cancer were more likely to die in the hospital, this difference was goal‐concordant in our cohort. Subspecialty PPC access may contribute to the achievement of goal‐concordant EOL care. In a cohort of pediatric oncology patients receiving subspecialty palliative care, non‐White children were more likely to die in the hospital than White children. These differences were goal‐concordant, suggesting these are race‐associated differences rather than disparities in end‐of‐life care. [ABSTRACT FROM AUTHOR]

Background: Children, adolescents, and young adults with hematologic malignancies tend to receive high‐intensity end‐of‐life care (HI‐EOLC), but sociodemographic and hospital‐based predictors of HI‐EOLC remain unclear. Methods: The authors conducted a population‐based, retrospective cohort study with the Premier Healthcare Database. They identified individuals with hematologic malignancies who were 0 to 39 years old at death and died between 2010 and 2017. HI‐EOLC was defined as experiencing 2 or more of the following: cardiopulmonary resuscitation, intravenous chemotherapy, hemodialysis, mechanical ventilation, tracheostomy placement, or an emergency department visit within the last 30 days of life and death in the intensive care unit. Multivariable logistic regression models were constructed to identify patient sociodemographic and hospital characteristics associated with HI‐EOLC. Results: Among 1454 decedents, more than half (55%) experienced HI‐EOLC. In multivariable models, patients treated in medium (adjusted odds ratio [aOR], 1.63; 95% confidence interval [CI], 1.07‐2.50) or large hospitals (aOR, 2.21; 95% CI, 1.45‐3.39), insured by Medicaid (aOR, 1.40 ; 95% CI, 1.09‐2.06), or receiving cancer‐directed treatment in the Northeast (aOR, 1.50; 95% CI, 1.05‐2.15) were more likely to receive HI‐EOLC. Conclusions: A majority of children, adolescents, and young adults with hematologic malignancies experienced HI‐EOLC, and the likelihood of HI‐EOLC was influenced by the hospital size, type of insurance, and geographic region. Further research is needed to determine how to mitigate these risks. Many children, adolescents, and young adults with hematologic malignancies experience intense end‐of‐life care across the United States. Predictors for more intense care may include 1) receiving care in larger hospitals, 2) having Medicaid insurance, and 3) receiving care in the Northeast. [ABSTRACT FROM AUTHOR]

Context: Interprofessional education (IPE) prepares clinicians for collaborative practice, yet little is known about the effectiveness of postgraduate IPE.Objectives: This is the first study to describe educational outcomes of an interprofessional fellowship in pediatric palliative care. Objectives were to understand the experiences of postgraduate trainees in an interprofessional, clinical environment and to evaluate program effect on interprofessional competencies.Methods: In this mixed-methodology study, we surveyed former fellows from 2002 to 2018 about their fellowship experience and perceived change in interprofessional skills. We performed qualitative semantic content analysis of fellows' responses about learning in an interprofessional context. We compared fellows' self-rated ability (5-point Likert scale), before and after fellowship, in 10 interprofessional competencies selected from the Interprofessional Education Collaborative's core competencies.Results: Response rate was 87% (41/47). Fifty-one percent of respondents were physicians, 29% were social workers, and 20% were nurse practitioners. Respondents reported significant improvement in all 10 competencies, with summed mean scores of 2.8 ± 0.6 prefellowship ("not very well prepared") and 4.4 ± 0.4 postfellowship ("very well" to "extremely well prepared") (t = 15.6, P< 0.0001). Effect size for each competency was greater than 1.9 (strong positive impact). The fellowship experience was characterized by dynamic educational relationships: peer relationships with interprofessional co-fellows, mentoring relationships with faculty, clinical relationships with patients and families, and collaborative relationships with the healthcare system. Benefits and challenges of IPE were associated with interprofessional roles, teamwork, patient care, and educational needs.Conclusion: This study demonstrates the feasibility and effectiveness of an interprofessional postgraduate fellowship in preparing clinicians for collaborative practice. [ABSTRACT FROM AUTHOR]

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7–17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child–parent dyads (N = 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care. [ABSTRACT FROM AUTHOR]

Background: In parallel with the increase in the number of children with life‐limiting or life‐threatening diseases, the need for and right to pediatric palliative care is also increasing. This study aimed to examine the metabolic diseases, evaluate the symptoms, and review the needs of children who were admitted to the pediatric palliative care service. Methods: Following the approval of the local ethics committee (18/7/2019‐107), the computer records of patients hospitalized in the pediatric palliative care service between December 1, 2018 and January 6, 2019 were reviewed retrospectively. Dr Behçet Uz Children's Hospital, Pediatric Palliative Care Center is third center in Turkey. Our pediatric palliative care center has one year of experience. Results: In the study period, there were 101 patients who were hospitalized in the pediatric palliative care service. Eighteen patients (19.7%) diagnosed with inborn errors of metabolism were included in the study. The mean age was 3.2 ± 2.1 (0–8) years. Although it could not be shown statistically, the duration of hospitalization of patients with congenital malformation was long. Conclusion: Pediatric palliative care provides the best care with the control of various symptoms in neurodegenerative congenital metabolic diseases that do not have treatment or treatment, but progressive symptoms cannot be prevented. [ABSTRACT FROM AUTHOR]

Background: This research aimed to survey a sample of nursing students and Doctor of Pharmacy (PharmD) students in Jordan about their knowledge of pediatric palliative care (PPC) in the context of treating terminally ill children. Method: A descriptive, cross‐sectional, correlational design was used to fulfill the goal of this research. A convenience sample of nursing and PharmD students currently studying in Jordan University of Science and Technology in Jordan was recruited to complete a survey that contained 20 statements about issues on and around the subject of PPC. Results: The results showed that there was a significant difference in PPC between nurses and PharmD students. The mother's education (t = 2.158, P = 0.032) and being a nursing or PharmD student (t = 1.969, P = 0.050) were associated with knowledge about PPC. Other listed factors such as gender, working ward, and age were not associated with knowledge of PPC. Conclusion: This was the first study in Jordan to survey a sample of nursing students and PharmD students in Jordan about their knowledge of PPC. The current study found that knowledge of nursing and PharmD students regarding PPC was satisfactory, depending on the scale used. [ABSTRACT FROM AUTHOR]

Objective  The conventional view toward the management of infants with the trisomy 18 and trisomy 13 syndromes has been to recommend pure comfort care and the avoidance of technological interventions. This commentary aims to address the recently raised question about whether there has been a shift in the paradigm of the management of infants with the two conditions. Study Design  The study design includes narrative review of the literature. Results  A body of opinion pieces and evidence has emerged indicating that there has been a recent increase in the administration of interventions, including ventilatory support and surgery, in the management of children with these syndromes. Conclusion  Based on the evidence in the literature, the author concludes that there has been a type of paradigm shift described by philosopher of science, Thomas Kuhn, in the treatment of infants with trisomy 18 and 13. More parents are being offered and choosing technological interventions, including cardiac surgery. Future investigation of the question whether intervention improves outcome, including the quality of life, is crucial in addressing the unanswered questions in this dialogue. Key Points The conventional approach to the treatment of trisomy 18 and 13 has been to avoid interventions. There is a growing body of evidence that this traditional view of management is changing. Future investigation of whether intervention improves outcome is crucial in addressing the unanswered questions. [ABSTRACT FROM AUTHOR]

Objective: Pediatric palliative care is a top-level care system that focuses on improving the quality of life of the child and family. Quality of life is an expression of individual well-being based on an individual's assessment of their own life. It includes satisfaction in all areas of life, including physical and mental health, environment, and social areas. Methods: The study was conducted with the primary caregiver parents of children admitted to the pediatric palliative care service of the Health Science University İzmir Dr. Behçet Uz Child Disease and Surgery Training and Research Hospital. The Turkish version of the World Health Organization Quality of Life WHOQOL-Bref (TR) questionnaire was applied with a personal information form containing demographic data. Results: Eighty-four patients were hospitalized in the specified period, and 67 primary caregiver parents agreed to participate in the study. Total scores evaluated by WHOQOL-Bref (TR); the physical domain was 19.95 ± 3.30, the mental domain was 19.95 ± 3.18, the social domain was 10.11 ± 2.40, and surrounding area was 16.38 ± 2.82. The physical and psychological sub-groups' scores were statistically significantly higher in primary caregiver parents with good social support (P < .005). Conclusion: It has been determined that in order to increase the quality of life and care of children with life-limiting and/or threatening diseases, the quality of life of primary caregiver parents should be increased, and "social support" procurement, which has the most important effect on the quality of life, is an important need. [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]

Abstract Background Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents. Discussion Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition “clinician regoaling”. Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians’ willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility. Conclusions Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.

Leigh A Donovan,1 Penelope J Slater,2 Sarah J Baggio,3 Alison M McLarty,3 Anthony R Herbert3,4 On behalf of the Quality of Care Collaborative Australia1Bereavement Service, Queensland Children’s Hospital, Children’s Health Queensland, Brisbane, QLD, Australia; 2Oncology Services Group, Queensland Children’s Hospital, Children’s Health Queensland, South Brisbane, QLD, Australia; 3Paediatric Palliative Care Service, Queensland Children’s Hospital, Children’s Health Queensland, Brisbane, QLD, Australia; 4Centre for Children’s Health Research at Institute of Health and Biomedical Innovation, Queensland University of Technology, Brisbane, QLD, AustraliaCorrespondence: Penelope J SlaterOncology Services Group, Queensland Children’s Hospital, Children’s Health Queensland, 12b, 501 Stanley St, South Brisbane, QLD 4101, AustraliaTel +61 7 3068 5785Email penny.slater@health.qld.gov.auPurpose: Demand for generalist health professional knowledge and skills in pediatric palliative care (PPC) is growing in response to heightened recognition of the benefits of a palliative approach across the neonatal, pediatric, adolescent and young adult lifespan. This study investigates factors that enhanced PPC workforce capability and education outcomes in metropolitan and regional areas through the integration of dedicated educator roles within specialist pediatric palliative care (SPPC) teams through a national education project.Methods: Cross-sectional, prospective qualitative study guided by the Consolidated Criteria for Reporting Qualitative Studies. The study drew on Discovery Interview methodology and transcripts subjected to inductive thematic analysis. A convenience sample (n=16) of health professionals and educators were recruited from specialist tertiary and regional services providing PPC in Australia.Results: Four themes emerged related to outcomes of the national PPC education project: (1) building capability in PPC, (2) developing inter-professional partnerships, (3) sustaining staff well-being, and (4) learning from children and families. Dedicated educator roles in SPPC services enhanced workforce capability through education and ongoing mentoring, built collaborative relationships between the complex network of care providers for children with a life-limiting condition (LLC) and their families, and improved quality and access to PPC. Delivery of education evolved from didactic to interactive engagement and coincided with development of a mentoring model between SPPC clinicians and generalist health and social care providers.Conclusion: This study contributes to a growing body of knowledge on innovative and responsive mechanisms for enhancing workforce capability in PPC and provides additional evidence to support funding of dedicated educator roles in specialist PPC services.Keywords: health professionals, education, workforce capability, pediatric palliative care

Background: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. Methods: We propose a scoping review following the framework by Arksey and O'Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. Discussion: The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. Systematic review registration: https://osf.io/yfch2/. [ABSTRACT FROM AUTHOR]

Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents. [ABSTRACT FROM AUTHOR]

Objectives: Define the impact of the coronavirus pandemic on pediatric palliative care team structures, communication, and workflow; and describe the roles, responsibilities, and reflections of interdisciplinary team members. Methods: Cross-sectional online surveys were posted on seven professional Listservs from May 2020 to June 2020. Data were summarized descriptively and with semantic content analyses. Results:N = 207 surveys were completed by pediatric palliative program representatives from 80 cities, inclusive of physicians, nurses, child life, social workers, chaplains, and psychologists. Teams consulted on <20% of potential or presumed COVID-19 cases in their centers. Sixty percent of personnel were deemed "essential" during the pandemic. One-third of personnel remained in their usual work locale, with some shifting to support adult palliative services and others working remotely. Over 60% reported a sense of team "distance" compared with "close" team cohesion, associated with physical location of team members (p < 0.01) and frequency of team counseling, education, or support meetings (p < 0.02). All programs adopted a form of telehealth for patient care, although 41% did not receive telehealth training and 73% perceived unequal care quality with virtual care. Absence of pediatric patients' family members due to visitation policies, missing human presence and physical touch, concern for personal and colleague health, and fear of financial sustainability for programs were notable stressors. Conclusions: While the number of children diagnosed with COVID-19 receiving hands-on care from pediatric palliative care teams was reportedly low, the coronavirus pandemic vastly impacted pediatric palliative care team structure, daily services, and communication models warranting attentiveness to lessons learned and future direction. [ABSTRACT FROM AUTHOR]

Background Children with brain and central nervous system (CNS) tumors experience substantial challenges to their quality of life during their disease course. These challenges are opportunities for increased subspecialty palliative care (PC) involvement. Palliative opportunities have been defined in the pediatric oncology population, but the frequency, timing, and factors associated with palliative opportunities in pediatric patients with CNS tumors are unknown. Methods A single-institution retrospective review was performed on children ages 0-18 diagnosed with a CNS tumor who died between January 1, 2012 and November 30, 2017. Nine palliative opportunities were defined prior to data collection (progression, relapse, admission for severe symptoms, intensive care admission, bone marrow transplant, phase 1 trial, hospice, do-not-resuscitate (DNR) order). Demographic, disease, treatment, palliative opportunity, and end-of-life data were collected. Opportunities were evaluated over quartiles from diagnosis to death. Results Amongst 101 patients with a median age at death of eight years (interquartile range [IQR] = 8.0, range 0-22), there was a median of seven (IQR = 6) palliative opportunities per patient, which increased closer to death. PC consultation occurred in 34 (33.7%) patients, at a median of 2.2 months before death, and was associated with having a DNR order (P =.0028). Hospice was involved for 72 (71.3%) patients. Conclusion Children with CNS tumors suffered repeated events warranting PC yet received PC support only one-third of the time. Mapping palliative opportunities over the cancer course promotes earlier timing of PC consultation which can decrease suffering and resuscitation attempts at the end-of-life. [ABSTRACT FROM AUTHOR]

Background: Palliative care is a rather concept that new in Iraq, there is no training intended for both health care specialists and the overall public. The lack of education and training programs is the most important barrier. Intermediate training is needed for individuals regularly at work with patients with life-threatening diseases. The End-of-Life Nursing Education Consortium-Pediatric Palliative Care meant for nurses with an interest in providing care for those children with a life-limiting disease or in the event of accidents and unexpected passing. Objective: The present paper is intended to evaluate the effect of a web-based course using the Normalization Process Theory, which focuses attention on how complex interventions become routinely embedded in practice and training of the sample academic nurses' staff in the application of the pediatric palliative care in routine daily practice. It hypothesizes that nurses' specialists will help after passing the training in providing palliative care for the pediatric population. Methods: In a Multicenter, parallel, Pragmatic trial, five health care settings spread over a single city of Babylon Province. Participants will be recruited and stratified to two strata (critical care units and noncritical care units). In the experimental condition, the (n = 86 academic nursing staff) will be trained in the application of the pediatric palliative care, for two weeks as web-based training course powered by Relais platform through inviting the nurses to participate via email, or instant messaging instruct WhatsApp, telegram, Viber account of participants to provide End of life care in addition to usual care to children and adolescents with life-limiting conditions. In the control condition (n=86), continue usual care. The program's effectiveness will be assessed at the level of nurses only. The statistical analyses will compare the baseline assessment for each participant (before the intervention) with a post-intervention assessment (after passing the training course). Moreover, a continuation assessment will occur three months after the course end. As around numerous unidentified factors influencing the effect of the course training, a progress evaluation to evaluate selection sample, application, and intervention value besides difficulties and organizers to implementation will as well be present comprised in the study analysis. The staff of nursing might not be the intervention blinded, nonetheless were blinded for the results. Results: The study trial recruitment opened in July 2020. The first outcomes are predicted to be available in December 2020. Discussion: Study object to determine the training effect of the academic nurse staff of multicenter departments' units with a training course in the application of new pediatric palliative care. The study strengths are the usual practice setting, the staff training, the readiness of staff to participate in the study, and the random allocation to the intervention. Possible drawbacks may drop out because of staff of nursing may well transfer to another department throughout the study period. [ABSTRACT FROM AUTHOR]

The presence of Pediatric Palliative Care (PPC) teams and PPC curricula at teaching hospitals are shown to increase resident physician education in pain and symptom management. However, their impact on residents' comfort in caring for children at the end of life (EOL) is not well studied. We sought to examine whether differences exist in reported levels of experience and education with palliative andEOL care among physicians completing residency before versus after the development of a PPC team. We surveyed 329 pediatrics residents and graduates from our medium-sized children's hospital about their experiences and education in providing palliative or EOL care to pediatric patients. We compared responses from residents who completed training prior to the development of a PPC team to those who completed training after its implementation. 149 individuals (45%) responded. Participants who completed residency during or after the implementation of the PPC team were more likely to agree that they received education about EOL symptom management (K2 = 11.58, P < 0.001) and felt comfortable caring for patients at EOL (K2 = 5.62, P = 0.02). Our findings suggest a beneficial impact of PPC team presence on pediatrics resident education. When appropriate, involving of pediatrics residents in the care of children approaching EOL should be supported and encouraged. [ABSTRACT FROM AUTHOR]

Little is known about the development of posttraumatic growth among parents of children with serious advanced disease. The purpose of this study is to describe parental posttraumatic growth 100 days after pediatric stem cell transplant. This is a cross-sectional, descriptive study of 24 parents, approximately 100 days after their children received stem cell transplant. Participants reported environmental, personal, and disease characteristics and completed measures of distress, coping, rumination, and posttraumatic growth. Evidence of parental posttraumatic growth was described in each of 5 dimensions (relating to others, new possibilities, personal strength, spiritual change, and appreciation of life). Posttraumatic growth was positively associated with parental distress, disengagement coping, and rumination measures (r = 0.44-0.47, P < .05). Appreciation of life demonstrated the strongest associations with distress and rumination (r = 0.53-0.61, P < .01). Curvilinear relationships were observed for the association of distress, disengagement coping, and involuntary engagement with posttraumatic growth (P < .05). Study results highlight opportunities for palliative care nurses and clinicians to facilitate opportunities to support parent posttraumatic growth during treatment for children's advanced disease. [ABSTRACT FROM AUTHOR]

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice. Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs. [ABSTRACT FROM AUTHOR]

Context: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPTs). More information is needed to inform and optimize collaborative care.Objectives: Define and describe the population of children with PPC involvement for whom there was concern for maltreatment.Methods: Single-center retrospective chart review of children with PPC involvement for whom there was concern for maltreatment, defined as involvement of CPS/CPT between 2005 and 2017. Medical and demographic variables were abstracted and analyzed. Analyses include descriptive tabulation and measurements of association between PPC and CPS/CPT variables.Results: Among 1804 children followed by PPC, 189 (10.4%) had documented CPS/CPT involvement. Among those, 113 (60%) had CPT involvement, 88 (47%) had concerns of medical neglect, and 100 (53%) had simultaneous CPS/CPT and PPC involvement. Goals of PPC consultation varied by clinical characteristics and concerns for medical neglect. Frequency of CPT involvement and physical abuse concerns also varied by child clinical characteristics.Conclusion: PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. Design and Methods: A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio‐recorded semi‐structured, face‐to‐face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters. The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed. Findings: Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner‐strengthening, recognition of parental skills, and promotion of self‐efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope. Practice Implications: To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope‐based intervention to provide an evidence base from which to enhance the well‐being of parental caregivers of children who have CCCs. [ABSTRACT FROM AUTHOR]

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care. [ABSTRACT FROM AUTHOR]

Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7–17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7–17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35–0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393. [ABSTRACT FROM AUTHOR]

Psychosocial and palliative care support during stem cell transplants (SCT) is known to improve outcomes. Aim: evaluate the support provided to children and families at the New Zealand National Allogeneic Stem Cell Transplant unit (NATC). Method: the psychosocial and palliative care support for children who received SCT between December 2012 and April 2018 was audited. Results: of the 101 children who received SCT, 97% were reviewed by the social work team (SW) and 82% by the psychiatric consult liaison team (CLT) at least once during their illness. However, pre-transplant psychological assessment only occurred in 16%, and during the SCT admission, only 55% received SW support, and 67% received CLT support. Eight out of eighty-five families (9%) were offered support for siblings. Eight of the sixteen children who died were referred for pediatric palliative care (PPC) with all supported and half the families who experienced a death (n = 8; 50%) received bereavement follow up. Conclusion: although the majority received some social work and psychological support, auditing against the standards suggests the consistency of involvement could be improved. Referrals for PPC were inadequate and largely for end-of-life phase. Sibling support, in particular donor siblings, had insufficient psychological assessment and support. Key recommendations are provided to address this underperformance. [ABSTRACT FROM AUTHOR]

Narrative medicine is introduced and explored as a potential tool for developing competency in medical training, including reduction of burnout, sustaining empathy, and allowing for reflective practice. Developing cultural humility, communication skills, ethics, community building, and advocacy are also reviewed as domains that may be bolstered by training in narrative. Applications specific to pediatric palliative care are suggested, along with avenues for further research. [ABSTRACT FROM AUTHOR]

Background: Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consultation and often undergo intensive end‐of‐life (EOL) care. We examined "palliative opportunities," or events when the integration of PC would have the greatest impact, present during a patient's hematologic malignancy course and relevant associations. Methods: A single‐center retrospective review was conducted on patients aged 0–18 years with a hematologic malignancy who died between 1/1/12 and 11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined. Descriptive statistics were performed. Palliative opportunities were evaluated over temporal quartiles from diagnosis to death. Timing and rationale of pediatric PC consultation were evaluated. Results: Patients (n = 92) had a median of 5.0 (interquartile range [IQR] 6.0) palliative opportunities, incurring 522 total opportunities, increasing toward the EOL. Number and type of opportunities did not differ by demographics. PC consultation was most common in patients with lymphoid leukemia (50.9%, 28/55) and myeloid leukemia (48.5%, 16/33) versus lymphoma (0%, 0/4, p = 0.14). Forty‐four of ninety‐two patients (47.8%) received PC consultation a median of 1.8 months (IQR 4.1) prior to death. Receipt of PC was associated with transplant status (p = 0.0018) and a higher number of prior palliative opportunities (p = 0.0005); 70.3% (367/522) of palliative opportunities occurred without PC. Conclusion: Patients with hematologic malignancies experience many opportunities warranting PC support. Identifying opportunities for ideal timing of PC involvement may benefit patients with hematologic cancers and their caregivers. [ABSTRACT FROM AUTHOR]

Background: Cancer pain management in children is challenging owing to their unique patient characteristics. We present the case of a 10-year-old girl whose cancer pain was successfully managed using an intrathecal neurolytic block. Case presentation: The patient experienced severe cancer pain due to recurrent right ilium osteosarcoma. The tumor progressed rapidly despite chemoradiotherapy and gradually invaded the right lumbar plexus, which resulted in severe neuropathic pain in the right lower extremity. Systemic analgesics failed to attenuate the pain. We performed an intrathecal neurolytic block using 10% phenol-glycerol. The neurolytic block completely relieved her right lower extremity pain. After the block, the patient's quality of life improved, and she spent her time with family. Conclusions: The intrathecal neurolytic block successfully relieved the patient's cancer pain. Successful intrathecal neurolytic blocks require meticulous pain assessment of individual patients, to avoid possible serious complications such as paresis/paralysis and bladder/bowel dysfunction. [ABSTRACT FROM AUTHOR]

Background: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life.Methods: Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared.Results: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084).Conclusion: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel. [ABSTRACT FROM AUTHOR]

This manuscript illuminates the nuanced ways in which the COVID-19 pandemic has impacted the pediatric palliative care social work role and clinical care in caring for children with life-limiting illnesses and their families throughout the country. The authors discuss memorable moments, logistical impacts, telehealth usage, decision-making experiences, end of life care, bereavement practices, specialized interventions, and self-care. The paper concludes with lessons learned and practical recommendations for the future. [ABSTRACT FROM AUTHOR]