1 40 39 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 3 - Oncology Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1002/cncr.35518" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.35518</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Bereaved parent preferences on quality end-of-life care for children with cancer in the South Publisher An entity responsible for making the resource available Cancer Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; terminal care; adult; article; cohort analysis; female; human; male; palliative therapy; aged; sibling; Alabama; interview; content analysis; parent; patient comfort; Likert scale; religion; central nervous system tumor; drug therapy; semi structured interview; malignant neoplasm; place of death; hospital mortality; family decision making; special situation for pharmacovigilance; at home mortality; open access; parental death Creator An entity primarily responsible for making the resource Martinez I; Currie E; Davis ES; Kumar R; Lawhon V; Snaman JM; Tefera RB; Bhatia S; Rosenberg AR; Johnston EE Description An account of the resource Purpose: The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. Method(s): Semi-structured interviews were conducted with parents of children who died of cancer >=6 months before at Children's of Alabama. Themes were identified via content analysis. Quotes related to medical intensity, chemotherapy, and location of death (LOD) were scored on 5-point Likert scales, ranging from 1 (comfort care, chemotherapy, or home death) to 5 (medically intense care, avoidance of chemotherapy, or hospital death). Result(s): Twenty-seven bereaved parents (12 Black) were interviewed. Children died at a mean of 13.1 years (SD = 6.1 years) and a median of 3 years before the interview (range = 1-12 years). Ten children (42%) had central nervous system tumors and the majority (63%) died in the hospital. Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8-4.0]). Instead, parents considered their child's desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child's EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care (1.8 [1.3-2.8]) and chemotherapy (3.5 [2.7-4.1]) at EOL. Conclusion(s): Families did not see chemotherapy and comfort care as conflicting goals. They sought quality care emphasizing flexibility, quality time with their child, and open access to their care team, regardless of LOD. Copyright © 2024 American Cancer Society. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/cncr.35518" target="_blank" rel="noreferrer noopener">10.1002/cncr.35518</a> 2024 2025 SE1 - Oncology Adult Aged Alabama Article at home mortality Bhatia S Cancer Central Nervous System Tumor Child Cohort Analysis Content Analysis Currie E Davis ES Drug Therapy Family Decision Making Female Hospital Mortality Human Interview Johnston EE Kumar R Lawhon V Likert scale Male Malignant Neoplasm Martinez I open access Palliative Therapy Parent Parental Death Patient Comfort Place Of Death Religion Rosenberg AR Semi Structured Interview Sibling Snaman JM special situation for pharmacovigilance Tefera RB Terminal Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 3 - Oncology Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1002/pbc.31272" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.31272</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Storytelling to support legacy making for bereaved parents of children with cancer Publisher An entity responsible for making the resource available Pediatric Blood and Cancer Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; childhood cancer; article; controlled study; female; human; palliative therapy; grief; coping; interview; parent; school child; human relation; oncology; therapy; caregiver; meaning-making; malignant neoplasm; storytelling; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Paul TK; Daniels S; Love A; Hart K; Kaye EC Description An account of the resource Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling in creating and sustaining legacy. Most participants (89%) told stories centered around the child's impact and parent's coping, including the child's character and interpersonal relationships during and after their lifetime as well as how the child's legacy influenced parents' grief experiences. Future research is needed to explore the potential impact of storytelling initiatives to support legacy-making for bereaved caregivers. Copyright © 2024 Wiley Periodicals LLC. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/pbc.31272" target="_blank" rel="noreferrer noopener">10.1002/pbc.31272</a> 2024 2025 SE1 - Oncology Article Caregiver Child Childhood Cancer Controlled Study Coping Daniels S Female Grief Hart K Human Human Relation Interview Kaye EC Love A Malignant Neoplasm meaning-making Oncology Palliative Therapy Parent Paul TK Pediatric Blood and Cancer School Child special situation for pharmacovigilance Storytelling Therapy Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 3 - Oncology Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1177/08258597241274027" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/08258597241274027</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Electronic Patient Reported Outcomes Measures (e-PROMs) in Pediatric Palliative Oncology Care: A Scoping Review Publisher An entity responsible for making the resource available Journal of Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; terminal care; female; human; male; newborn; palliative therapy; systematic review; review; interpersonal communication; oncology; quantitative study; health care personnel; groups by age; adolescent; therapy; infant; qualitative research; adverse drug reaction; Web of Science; PsycINFO; patient-reported outcome; special situation for pharmacovigilance; scoping review; electronic health record Creator An entity primarily responsible for making the resource Rusconi D; Basile I; Rampichini F; Colombo S; Arba L; Pancheri ML; Consolo L; Lusignani M Description An account of the resource Objective: Research findings regarding child-centered care and electronic patient reported outcome measures (e-PROMs) within pediatric palliative oncology care reveal an intricate field of study. This study aimed to map innovations in e-PROMs for the pediatric cancer population in palliative care and their impact on symptom management, and communication with healthcare professionals. Method(s): A scoping review was designed following the Arksey and O'Malley framework. Literature searches were conducted in CINAHL, Embase, MEDLINE, PsycINFO, SCOPUS, and Web of Science. Inclusion criteria targeted children aged 0-18 years with cancer, receiving palliative and/or end-of-life care, and using e-PROMs. Result(s): Twelve articles were included: 10 quantitative studies, one qualitative study, and one mixed-method study. A narrative synthesis approach was used to summarize the findings, categorized into three sections: (a) technological innovation of e-PROMs in pediatric palliative oncology care; (b) the impact of e-PROMs on symptom monitoring, management, and children's care; (c) the effects of e-PROMs on communication between children and healthcare professionals in pediatric palliative oncology care. Conclusion(s): e-PROMs have proven effective in empowering children to express their perspectives and actively engage in their end-of-life care. Due to flexible software and devices designed for various age groups, these tools fit seamlessly into children's daily routines and preferences, including the use of play-oriented applications. They facilitate a deeper understanding, and management of physical and emotional symptoms while ensuring care remains child-centered. This emphasizes the importance of preserving the essence of childhood and addressing the unique needs and experiences of young patients in pediatric palliative oncology care. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/08258597241274027" target="_blank" rel="noreferrer noopener">10.1177/08258597241274027</a> 2024 2025 SE1 - Oncology Adolescent Adverse Drug Reaction Arba L Basile I Child Colombo S Consolo L electronic health record Female groups by age Health Care Personnel Human Infant Interpersonal Communication Journal Of Palliative Care Lusignani M Male Newborn Oncology Palliative Therapy Pancheri ML patient-reported outcome Psycinfo Qualitative Research Quantitative Study Rampichini F Review Rusconi D Scoping review special situation for pharmacovigilance Systematic Review Terminal Care Therapy Web of Science Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 3 - Oncology Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.09.001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.09.001</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; United States; childhood cancer; article; female; human; major clinical study; male; palliative therapy; awareness; bereavement; school child; oncology; parental attitude; child death; patient referral; adolescent; hospice care; infant; caregiver; drug therapy; place of death; family; do not resuscitate order; sudden death; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Martinez I; Davis ES; Wimberly CE; Towry L; Johnston EE; Walsh KM Description An account of the resource CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes towards PC is crucial to improving PC utilization. OBJECTIVE(S): This study aimed to explore bereaved parent attitudes towards PC in pediatric oncology. METHOD(S): This study used data from Alex's Lemonade Stand: My Childhood Cancer Bereavement Survey. The survey included questions regarding bereaved parents' attitudes towards PC. RESULT(S): The survey included 72 bereaved families. Parents completed the survey a median of 11 years after their child's death. PC was involved in 71% of cases. These families were more likely to have do not resuscitate (DNR) orders, an advanced care plan, hospice care, a planned death location, and for their child to die outside the hospital. Although most parents (86%) agreed that it is a doctor's obligation to inform all patients with cancer about PC. PC referrals appeared to happen later than parents preferred. Lack of PC involvement was primarily due to PC not being offered or sudden death of the child. CONCLUSION(S): Parental hesitancy should not be viewed as a barrier to PC involvement. Although parents held mixed attitudes about PC, families accepted PC, desired earlier referrals, and believed it was a doctor's obligation to offer PC. These findings highlight the need for timely PC referrals, improved education, and increased awareness of PC services to enhance the integration of PC in pediatric oncology. Copyright © 2024. Published by Elsevier Inc. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.09.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.09.001</a> 2024 2025 SE1 - Oncology Adolescent Article Awareness Bereavement Caregiver Child Child Death Childhood Cancer Davis ES do not resuscitate order Drug Therapy Family Female Hospice Care Human Infant Johnston EE Journal of Pain and Symptom Management Major Clinical Study Male Martinez I Oncology Palliative Therapy Parental Attitude Patient Referral Place Of Death School Child special situation for pharmacovigilance sudden death Towry L United States Walsh KM Wimberly CE Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 3 - Oncology Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1002/pbc.31066" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.31066</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review Publisher An entity responsible for making the resource available Pediatric Blood and Cancer Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; childhood cancer; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; palliative therapy; terminal care; health care personnel; adolescent; therapy; bereavement; drug therapy; Hispanic; special situation for pharmacovigilance; cadaver Creator An entity primarily responsible for making the resource Daniels S; Franqui-Rios ND; Mothi SS; Gaitskill E; Cantrell K; Kaye EC Description An account of the resource Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. Methods: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015 and 2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. Results: Fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely (odds ratio [OR]: 1.73, p = .007) to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely (OR: 19.98, p < .001) to receive interventions compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p = .038) and those in palliative care (OR: 10.51, p < .001) were more likely to receive interventions. No significant race association was noted. Conclusion: All children and adolescents with cancer deserve quality care at end of life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/pbc.31066" target="_blank" rel="noreferrer noopener">10.1002/pbc.31066</a> 2024 2025 SE1 - Oncology Adolescent Adult Article Bereavement cadaver Cantrell K Child Childhood Cancer Cohort Analysis Daniels S Drug Therapy Female Franqui-Rios ND Gaitskill E Health Care Personnel Hispanic Human Kaye EC Major Clinical Study Male Mothi SS Palliative Therapy Pediatric Blood and Cancer Retrospective Study special situation for pharmacovigilance Terminal Care Therapy Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 3 - Oncology Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE1 - Oncology URL Address <a href="http://doi.org/10.1093/jnci/djae038" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/jnci/djae038</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Use of Cancer-Directed therapy at the end of life among adolescents and young adults Publisher An entity responsible for making the resource available Journal of the National Cancer Institute Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Adolescent; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; California; young adult; ethnicity; side effect; adolescent; therapy; drug combination; cancer center; drug therapy; adverse drug reaction; electronic health record; malignant neoplasm; special situation for pharmacovigilance; drug comparison Creator An entity primarily responsible for making the resource Mack JW; Cernik C; Xu L; Laurent CA; Fisher L; Cannizzaro N; Munneke J; Cooper RM; Lakin JR; Schwartz CM; Casperson M; Altschuler A; Wiener L; Kushi LH; Chao CR; Uno H Description An account of the resource Background: Adolescents and young adults frequently receive chemotherapy near death. We know less about the use of targeted agents and immunotherapy or trends over time. Methods: We conducted a retrospective cohort study of 1836 adolescents and young adults with cancer who died between 2009 and 2019 after receiving care at 1 of 3 sites (Dana-Farber Cancer Institute, Kaiser Permanente Northern California, and Kaiser Permanente Southern California). We reviewed electronic health data and medical records to examine use of cancer-directed therapy in the last 90 days of life, including chemotherapy, targeted therapy, immunotherapy, and investigational drugs. Results: Over the study period, 35% of adolescents and young adults received chemotherapy in the last 90 days of life; 24% received targeted therapy, 7% immunotherapy, and 5% investigational drugs. Additionally, 56% received at least 1 form of systemic cancer-directed therapy in the last 90 days of life. After adjustment for patient sex, race, ethnicity, age, site of care, diagnosis, and years from diagnosis to death, the proportion of adolescents and young adults receiving targeted therapy (odds ratio [OR] = 1.05 per year of death, 95% confidence interval [CI] = 1.02 to 1.10; P = .006), immunotherapy (OR = 1.27, 95% CI = 1.18 to 1.38; P < .0001), and any cancer-directed therapy (OR = 1.04, 95% CI = 1.01 to 1.08; P = .01) in the last 90 days of life increased over time. Conclusions: More than half of adolescents and young adults receive cancer therapy in the last 90 days of life, and use of novel agents such as targeted therapy and immunotherapy is increasing over time. Although some adolescents and young adults may wish to continue cancer therapy while living with advanced disease, efforts are needed to ensure that use of cancer-directed therapy meets preferences of adolescents and young adults approaching death. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1093/jnci/djae038" target="_blank" rel="noreferrer noopener">10.1093/jnci/djae038</a> 2024 2025 SE1 - Oncology Adolescent Adult Adverse Drug Reaction Altschuler A Article California cancer center Cannizzaro N Casperson M Cernik C Chao CR Cohort Analysis Cooper RM drug combination drug comparison Drug Therapy electronic health record Ethnicity Female Fisher L Human Journal of the National Cancer Institute Kushi LH Lakin JR Laurent CA Mack JW Major Clinical Study Male Malignant Neoplasm Munneke J Retrospective Study Schwartz CM Side Effect special situation for pharmacovigilance Therapy Uno H Wiener L Xu L Young Adult Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 2 - Low Resource Setting Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE2 - LRS URL Address <a href="http://doi.org/10.4067/S1726-569X2024000200311" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4067/S1726-569X2024000200311</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Brazilian Physicians' Attitudes and Feelings Towards Palliative Care in Pediatrics Publisher An entity responsible for making the resource available Acta Bioethica Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; article; female; human; palliative therapy; pediatrics; health care quality; cross-sectional study; physician attitude; adolescent; questionnaire; attitude; pediatric patient; sadness; physician; Chile; special situation for pharmacovigilance; phylogenetic tree Creator An entity primarily responsible for making the resource Rocha AA; Meirelles BG; de Assis LCL; Nunes RML Description An account of the resource The aim of the article is to evaluate and understand the feelings and attitudes of Brazilian physicians regarding the implementation of palliative care in pediatric patients. Between July 2018 and December 2019, 236 questionnaires were sent to physicians on the National Academy of Palliative Care roster. The data collected through the planned questionnaires were analyzed using the IRAMUTEQ programs (Interface de R pour les Analyzes Multidimensionnelles de Textes et de Questionnaires). From the analysis performed by IRAMUTEQ, a dendrogram containing words with p<0.05 was obtained. Feelings of sadness, anguish, relief, regret and fulfillment were perceived as relevant. Attitudes such as understanding, communication, instructing, treating well, strategy, and multiprofessional conferences were also described. Thus, it was observed that these professionals experience different contradictory feelings and make use of different strategies so that they do not harm the treatment carried out, in addition to maintaining a good relationship with the patient's family. In the present study, we demonstrate that there are intrinsic characteristics of pediatric palliative care that are a source of mixed feelings for medical professionals. In this context, challenges still exist and it is essential to conduct new studies that address this issue. Paying attention to these feelings promotes better management of palliative care in pediatrics. Copyright © 2024, Universidad de Chile - Centro Interdisciplinario de Estudios en Bioetica. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.4067/S1726-569X2024000200311" target="_blank" rel="noreferrer noopener">10.4067/S1726-569X2024000200311</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 2025 SE2 - LRS Acta Bioethica Adolescent Article Attitude Child Chile Cross-sectional Study de Assis LCL Female Health Care Quality Human Meirelles BG Nunes RML Palliative Therapy pediatric patient Pediatrics phylogenetic tree Physician Physician Attitude Questionnaire Rocha AA Sadness special situation for pharmacovigilance Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2024 Special Edition 2 - Low Resource Setting Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2025 SE2 - LRS URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.106" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.02.106</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Decision-Making Factors in Advanced or Incurable Childhood Cancer Diagnosis in Low- and Middle- Income Countries Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; diagnosis; childhood cancer; female; human; male; clinical article; interview; World Health Organization; content analysis; self report; decision making; conference abstract; drug therapy; semi structured interview; advanced cancer; middle income country; special situation for pharmacovigilance; access to treatment; catalyst; cancer diagnosis Creator An entity primarily responsible for making the resource Rule A; Salek M Description An account of the resource Outcomes: 1. Using a structured approach, participants will self-report the ability to understand the static and dynamic factors that influence treatment decision-making at diagnosis for children presenting with advanced cancer in LMICs. 2. Participants will reflect on the need to revise and develop treatment guidelines that are adaptable to resource-constrained settings and consider challenges faced by physicians caring for children presenting with advanced cancer at diagnosis, considering also the need to explore decision-making approaches of other key decision-partners. Key Message: Physicians face challenging treatment decision-making for children presenting with advanced cancer in LMICs. In this study, we sought to understand approaches to decision-making and factors modifying treatment recommendations at diagnosis. Preliminary findings describe how decision-making can be influenced by dynamic factors and cure-directed treatment is not always offered. Revision of treatment guidelines considering challenges faced in these contexts is required. Introduction/Context: Physicians in low- and middle-income countries (LMICs) face challenging treatment decision-making for children presenting with advanced cancer. Decision-making in these circumstances has not been well described, and current treatment guidelines may not reflect challenges faced by physicians in LMICs. Objective(s): In this study, we sought to understand physician decision-making approaches and factors that modify treatment recommendations at diagnosis for these children in LMICs. Method(s): 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. Result(s): 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. Conclusion(s): 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. Keywords: Models of Palliative Care DeliveryGlobal Palliative CareCopyright © 2024 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.106" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.106</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 2025 SE2 - LRS access to treatment Advanced Cancer Cancer Diagnosis catalyst Child Childhood Cancer Clinical Article conference abstract Content Analysis Decision Making Diagnosis Drug Therapy Female Human Interview Journal of Pain and Symptom Management Male middle income country Rule A Salek M Self Report Semi Structured Interview special situation for pharmacovigilance World Health Organization Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource March 2025 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month March List 2025 URL Address <a href="http://doi.org/10.1016/j.anpedi.2024.503720" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.anpedi.2024.503720</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Cross-sectional study of the perceived well-being of children in palliative care Publisher An entity responsible for making the resource available Anales de Pediatria Date A point or period of time associated with an event in the lifecycle of the resource 2025 Subject The topic of the resource cognition; palliative therapy; psychologic assessment; wellbeing; adolescent; adult; anxiety; article; catastrophizing; child; cross-sectional study; depression; emotion regulation; female; human; major clinical study; male; multiple linear regression analysis; problem behavior; psychological care; rumination; special situation for pharmacovigilance; visual analog scale Creator An entity primarily responsible for making the resource Toro-Perez D; Camprodon-Rosanas E; Bolance C; Guillen M; Navarro Vilarrubi S; Limonero JT Description An account of the resource Abstract Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs). Methods: We conducted a cross-sectional study in young people aged 8 years or older with collection of data on demographic and disease-related variables from the health records. In the psychological evaluation, we collected data on emotion regulation, cognitive strategies and risk of depression and anxiety, in addition to the assessment of the pWB through a visual analogue scale. We calculated means and standard deviations and assessed differences in means using the t test. We fitted multiple linear regression models for pWB as a function of sociodemographic, disease-related and psychological variables. Results: The sample consisted of 60 children and adolescents with a mean age of 16.0 (SD, 4.2; range, 9-24), 33.3% female, and with a mean pWB score of 7.0 (SD, 1.8). Forty five percent had emotional symptoms; 46.7% problems with peers, 33.3% behavioural problems, 22% risk of depression, 30% risk of anxiety and 18.3% emotion regulation difficulties. The regression model showed that age 14 years or greater (P = .03), exacerbated symptoms (P = .01), the risk of depression (P = .01) and the use of the rumination and catastrophizing cognitive strategies (P < .01) had a negative impact on pWB. Conclusions: Young people with LLTCs have problems with peers, emotional symptoms and anxious-depressive symptoms. Poorer pWB scores were associated with age 14 years or older, symptom exacerbation, emotional symptoms, depression and the use of rumination and catastrophizing cognitive strategies. Psychological care programmes must respond to these characteristics. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.anpedi.2024.503720" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2024.503720</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2025 Adolescent Adult Anales de Pediatría anxiety Article Bolance C Camprodon-Rosanas E catastrophizing Child Cognition Cross-sectional Study Depression emotion regulation Female Guillen M Human Limonero JT Major Clinical Study Male March List 2025 multiple linear regression analysis Navarro Vilarrubi S Palliative Therapy problem behavior psychologic assessment Psychological care rumination special situation for pharmacovigilance Toro-Perez D Visual Analog Scale Wellbeing Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource March 2025 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month March List 2025 URL Address <a href="http://doi.org/10.1590/1806-9282.20241023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1590/1806-9282.20241023</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource The effect of musical-animated toys and audiobooks on fear and pain in the tracheostomy care of children in the palliative care Publisher An entity responsible for making the resource available Revista da Associacao Medica Brasileira Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource audiobook; book; musical animated toy; musical instrument; palliative therapy; tracheostomy; anxiety; article; artificial ventilation; atelectasis; attention; autism; behavior change; breathing rate; child; clinical trial; controlled study; drug therapy; fear; female; hospitalization; human; interrater reliability; intervention study; learning; major clinical study; male; mean corpuscular volume; music therapy; oxygen saturation; pain; pain assessment; patient satisfaction; post hoc analysis; procedural pain; pulse oximeter; pulse rate; questionnaire; sleep disorder; special situation for pharmacovigilance; systolic blood pressure; trachea stenosis; videorecording Creator An entity primarily responsible for making the resource Akay G; Kadiroglu T; Tufekci FG; Oncer A; Bulut DK Description An account of the resource Abstract Objective: The study aimed to evaluate the effects of musical-animated toys and audiobooks on the fear and pain in the tracheostomy care of children in the palliative care clinic. Methods: The study design was a single-center, single-arm, crossover-controlled study. The sample consisted of 16 children who were 3-6 years old. Musical-animated toys and audiobooks were used to divert the children's attention during tracheostomy care. The children whose control data were collected on the first day were shown musical-animated toys on the second day and listened to an audiobook a week later. The children were video-recorded during the interventions. Results: The children who received musical-animated toy and audiobook interventions during and after tracheostomy care expressed less pain than those in the control group, and their fear levels were less during the care. Conclusion: Audiobook and musical-animated toy interventions were effective in reducing children's procedure-related fear and pain during tracheostomy care in the pediatric palliative care clinic. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1590/1806-9282.20241023" target="_blank" rel="noreferrer noopener">10.1590/1806-9282.20241023</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Akay G anxiety Article Artificial Ventilation atelectasis Attention audiobook Autism behavior change book breathing rate Bulut DK Child Clinical Trial Controlled Study Drug Therapy Fear Female Hospitalization Human interrater reliability intervention study Kadiroglu T Learning Major Clinical Study Male March List 2025 mean corpuscular volume Music Therapy musical animated toy musical instrument Oncer A oxygen saturation Pain Pain Assessment Palliative Therapy Patient Satisfaction Post Hoc Analysis procedural pain pulse oximeter pulse rate Questionnaire Revista da Associacao Medica Brasileira sleep disorder special situation for pharmacovigilance systolic blood pressure trachea stenosis Tracheostomy Tufekci FG videorecording Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource January 2025 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November List 2024 URL Address <a href="http://doi.org/10.1016/j.chest.2024.06.3024" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.chest.2024.06.3024</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource CHILDREN WITH LIFE-LIMITING CONDITIONS USING NONINVASIVE VENTILATION: PARENT PERSPECTIVES Publisher An entity responsible for making the resource available Chest Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource noninvasive ventilation; parent; adolescent; adult; anticipatory guidance; care behavior; child; clinical article; conference abstract; decision making; dyspnea; female; health care personnel; human; interview; male; personal experience; qualitative research; special situation for pharmacovigilance; therapy Creator An entity primarily responsible for making the resource Olmstead D; Turnbull H; Kingsley B; Castro-Codesal M Description An account of the resource SESSION TITLE: Pediatric Potpourri SESSION TYPE: Original Investigations PRESENTED ON: 10/06/2024 01:30 pm - 02:30 pm PURPOSE: Non-invasive ventilation (NIV) is increasingly used in children with life-limiting conditions (LLCs) to treat their breathing difficulties and potentially prolong life. To date, research on NIV is almost exclusively quantitative, failing to explore how this technology influences the life and death experiences of children with LLCs. An in-depth understanding of parents' experiences with NIV in this vulnerable group of children is necessary to inform optimal care. The purpose of this research was to explore the lived experiences of parents caring for a child with LLCs who used non-invasive ventilation both during and at the end of their life. METHOD(S): This was a qualitative study using an interpretive descriptive method in order to gain a greater clinical understanding of the experience of using NIV in children with LLCs. A purposive sampling approach was used and in-depth interviews with bereaved parents of children with LLCs who had used NIV were completed. Interviews were audio recorded and transcribed verbatim, then analyzed using interpretative description methodology. As a project that derived out of a clinically motivated question, interpretive description guided our ability to understand the role of non-invasive ventilation for children with life limiting and complex illnesses in order to make practical changes to clinical policy and practice. RESULT(S): Parents shared personal insights on their experiences with NIV therapies throughout the progression of their child's illness towards and during end of life. Themes arising from parent narratives encompassed: decision making through their child's life trajectory - by the medical team and by the parents and the child; the importance of the child's "voice" at all stages of their illness; the meaning of NIV and how that changed over time; and the end-of-life experience as it related to their child's use of NIV. Parent reflections highlighted the need for health care providers and families to have a shared understanding of the impact of and goals for NIV therapy throughout a child's life journey and towards end of life. Powerful descriptions of end-of-life experiences revealed how parents continue to live with their decisions many years following the death of their child. CONCLUSION(S): In this study, parent narratives provided inimitable and meaningful insights on the experience of NIV therapy for children with LLCs throughout the life trajectory. These rich and personal descriptions highlight the importance for NIV therapy decisions to align with child and family goals at all stages of a child's life and end of life. CLINICAL IMPLICATIONS: Eliciting and integrating child and family-centered goals in decisions on the initiation and use of NIV therapy in children with LLCs is essential to optimize care. Additionally, delivering goal concordant care may be an important part of minimizing decisional regret after the loss of a child. Health care providers should provide anticipatory guidance on the expected illness trajectory to parents caring for children with medical complexity using non-invasive ventilation. DISCLOSURES: No relevant relationships by Maria Castro-Codesal No relevant relationships by Bethan Kingsley No relevant relationships by Deborah Olmstead No relevant relationships by Hayley Turnbull Copyright © 2024 American College of Chest Physicians Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.chest.2024.06.3024" target="_blank" rel="noreferrer noopener">10.1016/j.chest.2024.06.3024</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Adult Anticipatory Guidance care behavior Castro-Codesal M Chest Child Clinical Article conference abstract Decision Making Dyspnea Female Health Care Personnel Human Interview Kingsley B Male Noninvasive Ventilation November List 2024 Olmstead D Parent Personal Experience Qualitative Research special situation for pharmacovigilance Therapy Turnbull H Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource October 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month October List 2024 URL Address <a href="http://doi.org/10.1136/archdischild-2024-rcpch.45" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2024-rcpch.45</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING? Publisher An entity responsible for making the resource available Archives of Disease in Childhood Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource advance care planning; palliative therapy; adolescent; aged; child; conference abstract; human; infant; major clinical study; newborn; pediatric intensive care unit; prevalence; retrospective study; special situation for pharmacovigilance; terminal care; therapy; time of death Creator An entity primarily responsible for making the resource Parry-Reece J; Jassal S; Soman A Description An account of the resource Objectives To assess the prevalence of advance care planning in children and young people with life limiting conditions who die on the paediatric intensive care unit. Methods We retrospectively audited data on children and young people who had died on our PICU between January 2020 and February 2023. We included only children and young people who had a known life-limiting condition and excluded for children aged 28 days or less at the time of death. Results Sixty-seven children met our inclusion and exclusion criteria. Of these, only 5 had an advance care plan in place prior to their final admission to PICU, and only 1 had a ReSPECT form in place. 33/67 children received a ReSPECT form in the days or hours preceding their death, during their final stay. 9/67 children had paediatric palliative care input prior to admission and 22/67 had paediatric palliative care input during admission. Conclusion End-of-life care discussions are well documented whilst children and young people are in our PICU. However, it appears that children and young people with known lifelimiting conditions do not often receive specialist palliative care input and the opportunity to formulate advance care plans before a life-threatening crisis. Greater understanding of the barriers to accessing paediatric palliative care and/or advance care planning amongst various subgroups of children and young people with life limiting conditions is required and only then can appropriate recommendations be made. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2024-rcpch.45" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2024-rcpch.45</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Advance Care Planning Aged Archives of Disease in Childhood Child conference abstract Human Infant Jassal S Major Clinical Study Newborn October List 2024 Palliative Therapy Parry-Reece J Pediatric Intensive Care Unit Prevalence Retrospective Study Soman A special situation for pharmacovigilance Terminal Care Therapy time of death Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource October 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month October List 2024 URL Address <a href="http://doi.org/10.3390/children11070821" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11070821</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Polypharmacy in Children with Medical Complexity: A Cross-Sectional Study in a Pediatric Palliative Care Center Publisher An entity responsible for making the resource available Children Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource palliative therapy; polypharmacy; adolescent; adult; analgesia; article; caregiver; caregiver burden; child; cross-sectional study; drug cost; drug safety; eye drops; female; human; infant; male; nose spray; observational study; off label drug use; pediatrics; pharmacoeconomics; prevalence; quality of life; questionnaire; special situation for pharmacovigilance; typographical error Creator An entity primarily responsible for making the resource Zanin A; Baratiri F; Roverato B; Mengato D; Pivato L; Avagnina I; Maghini I; Divisic A; Rusalen F; Agosto C; Venturini F; Benini F Description An account of the resource Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the prevalence of polypharmacy, medication burden, off-label drug use, and associated costs. Method(s): Conducted at the Pediatric Palliative Care Center of Padua, Italy, from August to October 2021, this cross-sectional observational study included patients up to 23 years old with at least one prescribed drug. Data were collected from medical records and caregiver interviews. Drug costs were collected from the Italian Medicine Agency. Descriptive statistical analysis was performed. For comparisons among categorical variables, the Chi-square test was used, and for those among continuous variables, the ANOVA test was used. Result(s): This study analyzed treatment regimens of 169 patients with a median age of 12.5 years (0.3-23). Polypharmacy was present in 52.7% of patients, and medication burden was observed in 44.4%, both varying significantly by primary diagnosis (p < 0.001). The median daily cost per patient was EUR 2.2 (IQR 0.9-7.1), with significant variation among subgroups. Only 34.6% of prescriptions were off-label. Conclusion(s): polypharmacy and medication burden are frequent among our CMC population, with some differences according to primary diagnosis. Copyright © 2024 by the authors. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3390/children11070821" target="_blank" rel="noreferrer noopener">10.3390/children11070821</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Adult Agosto C Analgesia Article Avagnina I Baratiri F Benini F Caregiver Caregiver Burden Child Children Cross-sectional Study Divisic A drug cost Drug Safety eye drops Female Human Infant Maghini I Male Mengato D nose spray Observational Study October List 2024 off label drug use Palliative Therapy Pediatrics Pharmacoeconomics Pivato L Polypharmacy Prevalence Quality Of Life Questionnaire Roverato B Rusalen F special situation for pharmacovigilance typographical error Venturini F Zanin A Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource October 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month October List 2024 URL Address <a href="http://doi.org/10.34067/KID.0000000000000558" target="_blank" rel="noreferrer noopener"> http://doi.org/10.34067/KID.0000000000000558</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers Publisher An entity responsible for making the resource available Kidney360 Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource caregiver; dialysis; nurse; palliative therapy; pediatric patient; adolescent; advanced practice provider; article; child; consultation; controlled study; disease management; drug therapy; female; human; knowledge; male; quality of life; special situation for pharmacovigilance; tertiary health care; therapy Creator An entity primarily responsible for making the resource Lipsitz J; Beveridge MS; Maddox K Description An account of the resource BACKGROUND: Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but remain underutilized within pediatric nephrology. Little is known about how providers, nurses, and caregivers perceive palliative care integration into the multidisciplinary care of dialysis-dependent pediatric patients. METHOD(S): This study surveyed pediatric nephrology providers (physicians and advanced practice providers), inpatient pediatric nephrology bedside nurses, and caregivers of dialysis-dependent pediatric patients at a freestanding tertiary care children's hospital in Dallas, Texas. Participants completed a survey regarding knowledge about, experiences with, and perceptions of palliative care in pediatric nephrology. RESULT(S): 10 providers, 20 nurses, and 18 caregivers completed the survey. Although 80% of providers and all nurses agreed that palliative care would benefit dialysis-dependent pediatric patients, most believed that palliative care is not as important in pediatric nephrology as it should be. 70% of providers and 45% of nurses believed that they understand the scope of palliative care. 90% of providers and all nurses desired more palliative care education. Of the 22% of caregivers whose child had already received palliative care services, all found the consultation to be helpful. Many providers and nurses worried that a palliative care consultation would signal to families that the nephrology team would be giving up on their child and that their child is approaching the end of life. However, no caregivers thought that a consultation would mean that the nephrology team would be giving up on their child and only 6% worried that it would indicate that their child is approaching the end of life. CONCLUSION(S): These data support further palliative care education for pediatric nephrology providers and nurses and more robust and systematic involvement of subspecialty palliative care for dialysis-dependent pediatric patients. Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Society of Nephrology. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.34067/KID.0000000000000558" target="_blank" rel="noreferrer noopener">10.34067/KID.0000000000000558</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent advanced practice provider Article Beveridge MS Caregiver Child Consultation Controlled Study dialysis Disease Management Drug Therapy Female Human Kidney360 Knowledge Lipsitz J Maddox K Male Nurse October List 2024 Palliative Therapy pediatric patient Quality Of Life special situation for pharmacovigilance tertiary health care Therapy Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource October 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month October List 2024 URL Address <a href="http://doi.org/10.1136/archdischild-2024-rcpch.488" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2024-rcpch.488</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource A RETROSPECTIVE AUDIT FOR PRE-HOSPITAL RESPECT DOCUMENTATION FOR CHILDREN WITH COMPLEX LIFE LIMITING NEURO-DISABILITY ADMITTED TO PAEDIATRIC INTENSIVE CARE UNIT Publisher An entity responsible for making the resource available Archives of Disease in Childhood Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource clinical audit; intensive care; neurodisability; pediatric intensive care unit; adolescent; caregiver; child; conference abstract; controlled study; female; hospice care; human; infant; major clinical study; male; palliative therapy; retrospective study; special situation for pharmacovigilance; terminal care Creator An entity primarily responsible for making the resource Varma R; Mohamed M; Kayani R Description An account of the resource Objectives As per NICE guidelines [NG 61], children and young people with life limiting conditions and their carers or parents should have enough time and opportunities for discussions about difficult decisions around end-of-life care. A retrospective audit of all children with complex life limiting neurodisabilities who died in the paediatric intensive care unit was carried out to assess if they were: a) Known to any other team/hospice care b) Have documented RESPECT form or end-of-life care discussion. Methods A retrospective review of medical records was done of all children who died in the paediatric intensive care unit between May 2014 to Sept 2022. Children who died in PICU but did not have any pre-existing life limiting neuro-disability and children who had cancer were excluded. Results Only 2 out of 33 eligible patients (6%) had end-of-life care discussion prior to admission to PICU. Another 1 patient was known to the palliative care team but did not have any documented end-of-life care plan. Conclusion Children with pre-existing life limiting neuro-disabilities and their families are not getting enough time and opportunities for discussions about difficult decisions around end-of-life care. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2024-rcpch.488" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2024-rcpch.488</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Archives of Disease in Childhood Caregiver Child Clinical Audit conference abstract Controlled Study Female Hospice Care Human Infant Intensive Care Kayani R Major Clinical Study Male Mohamed M Neurodisability October List 2024 Palliative Therapy Pediatric Intensive Care Unit Retrospective Study special situation for pharmacovigilance Terminal Care Varma R Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September List 2024 URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.06.023" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.06.023</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Assessing Pediatric Resident Needs in Grief and Bereavement Education Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource dying; child death; major clinical study; education; cross-sectional study; health care personnel; human; article; child; female; male; controlled study; bereavement; palliative therapy; grief; leadership; curriculum; needs assessment; peer group; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Reuman H; Maurer SH; Harris K; Brown AW Description An account of the resource Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. Objectives: This work aims to assess pediatric residents' needs and preferences for content included in a curriculum on grief and bereavement. Methods: Pediatric residents, at a single institution, completed an electronic survey in Spring 2023 on how they cope with patient deaths and their preferences on content in a proposed grief and bereavement curriculum. Results: The survey was emailed to 165 current or recent trainees; 71 surveys were fully completed (43% response rate). Most respondents (63/71, 89%) indicated that a formalized bereavement curriculum for pediatric residents is important. The resources most frequently utilized by residents following a pediatric death included peer support (59/71, 83%), attending a debrief coordinated by residency leadership or the supportive care division (38/71, 54%), and reading a patient's obituary (23/71, 32%). The most desired content areas were institutional services provided to bereaved families (66/71, 93%), unique aspects of healthcare professional grief (58/71, 82%), and experiences of bereaved families hearing from providers after their child's death (56/71, 79%). Conclusion: Pediatric residents indicate a strong desire for structured curricula on grief and bereavement focusing on resources that exist for families, approaches to grieving as a healthcare professional, and better understanding the experiences of bereaved families. These data may inform educators on priorities in training and support of pediatric residents on grief and bereavement. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.06.023" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.06.023</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Article Bereavement Brown AW Child Child Death Controlled Study Cross-sectional Study Curriculum Dying Education Female Grief Harris K Health Care Personnel Human Journal of Pain and Symptom Management Leadership Major Clinical Study Male Maurer SH Needs Assessment Palliative Therapy Peer Group Reuman H September List 2024 special situation for pharmacovigilance Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September List 2024 URL Address <a href="http://doi.org/10.1097/PCC.0000000000003579" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/PCC.0000000000003579</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021 Publisher An entity responsible for making the resource available Pediatric Critical Care Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource palliative therapy; major clinical study; retrospective study; cohort analysis; health care personnel; time of death; human; article; child; female; male; terminal care; consultation; resuscitation; intensive care unit; drug therapy; aggression; coronary care unit; special situation for pharmacovigilance; cluster analysis; hospital mortality; organ transplantation Creator An entity primarily responsible for making the resource Liesse KM; Malladi L; Dinh TC; Wesp BM; Kam BN; Turturice BA; Pyke-Grimm KA; Char DS; Hollander SA Description An account of the resource Objective: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various therapies these patients undergo at the end of life (EOL). Second, the work used these data to develop a new, broader spectrum for classifying pediatric EOL trajectories. Design: Retrospective, single-center study, 2013-2021. Setting: Four hundred sixty-one bed tertiary, stand-alone children's hospital with 112 ICU beds. Patients: Patients of age 0-26 years old at the time of death. Interventions: None. Measurements and main results: Of 1111 included patients, 85.7% died in-hospital. Patients who died outside the hospital were older. Among the 952 in-hospital deaths, most occurred in ICUs (89.5%). Clustering analysis was used to distinguish EOL trajectories based on the presence of intensive therapies and/or an active resuscitation attempt at the EOL. We identified five simplified categories: 1) death during active resuscitation, 2) controlled withdrawal of life-sustaining technology, 3) natural progression to death despite maximal therapy, 4) discontinuation of nonsustaining therapies, and 5) withholding/noninitiation of future therapies. Patients with recent surgical procedures, a history of organ transplantation, or admission to the Cardiovascular ICU had more intense therapies at EOL than those who received palliative care consultations, had known genetic conditions, or were of older age. Conclusions: In this retrospective study of pediatric EOL trajectories based on the intensity of technology and/or resuscitation discontinued at the EOL, we have identified associations between these trajectories and patient characteristics. Further research is needed to investigate the impact of these trajectories on families, patients, and healthcare providers. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/PCC.0000000000003579" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000003579</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Aggression Article Char DS Child Cluster Analysis Cohort Analysis Consultation coronary care unit Dinh TC Drug Therapy Female Health Care Personnel Hollander SA Hospital Mortality Human Intensive Care Unit Kam BN Liesse KM Major Clinical Study Male Malladi L Organ Transplantation Palliative Therapy Pediatric Critical Care Medicine Pyke-Grimm KA Resuscitation Retrospective Study September List 2024 special situation for pharmacovigilance Terminal Care time of death Turturice BA Wesp BM Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September List 2024 URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.06.027" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.06.027</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Challenges in Home-Based Pediatric Hospice and Palliative Care: A Case Series Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource palliative therapy; school child; hospice; clinical practice; human; article; child; male; drug therapy; therapy; case study; knowledge gap; special situation for pharmacovigilance; oral drug administration Creator An entity primarily responsible for making the resource Jarrell JA; Grossoehme DH; Friebert S; Ajayi TA; Thienprayoon R; Humphrey L Description An account of the resource Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and palliative care, there remain barriers to its optimal development, implementation, and dissemination as well as best clinical practice knowledge gaps. This case series presents specific examples of ubiquitous challenges in pediatric home-based hospice and palliative care in hopes of guiding future research, education, advocacy, and program development efforts. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.06.027" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.06.027</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Ajayi TA Article Case Study Child Clinical Practice Drug Therapy Friebert S Grossoehme DH Hospice Human Humphrey L Jarrell JA Journal of Pain and Symptom Management knowledge gap Male oral drug administration Palliative Therapy School Child September List 2024 special situation for pharmacovigilance Therapy Thienprayoon R Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September List 2024 URL Address <a href="http://doi.org/10.1177/00099228241264123" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/00099228241264123</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Prevalence and Mortality of Life-Threatening and Life-Shortening Diseases in Children and Adolescents in Germany Publisher An entity responsible for making the resource available Clinical Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource adolescent; newborn; epidemiology; palliative therapy; major clinical study; preschool child; prevalence; outpatient care; human; article; child; diagnosis; cause of death; drug therapy; health insurance; mortality; Germany; special situation for pharmacovigilance; ICD-10; lifespan; secondary data analysis Creator An entity primarily responsible for making the resource Burgio NM; Jennessen S Description An account of the resource This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons documented by the statutory health insurance funds in Germany from 2014 to 2019 was conducted in collaboration with the German Association of Statutory Health Insurance Funds (GKV-SV) and the Institute for Applied Health Research Berlin (InGef), whose data sets vary in collection methods. Diagnosis prevalence and mortality were calculated based on selected International Classification of Diseases, 10th Revision (ICD-10) codes reported in inpatient and outpatient care settings. In Germany, the diagnosis prevalence of life-threatening and life-shortening diseases in children and adolescents ranges between 319 948 (InGef-adapted Fraser list) and 402 058 (GKV-SV). These diagnoses can be differentiated into different disease groups (Together-for-Short-Lives [TfSL] 1-4). The TfSL-1 group in which curative treatment can be feasible represents the largest one, with 190 865 persons. In 2019, approximately 1458 children and adolescents with life-threatening and life-shortening diseases died. The current diagnostic and mortality data of affected children and adolescents in Germany serve as the essential foundation for further research into the health care of the target group. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/00099228241264123" target="_blank" rel="noreferrer noopener">10.1177/00099228241264123</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Article Burgio NM Cause Of Death Child Clinical Pediatrics Diagnosis Drug Therapy Epidemiology Germany health Insurance Human Icd-10 Jennessen S Lifespan Major Clinical Study Mortality Newborn outpatient care Palliative Therapy Preschool Child Prevalence secondary data analysis September List 2024 special situation for pharmacovigilance Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September List 2024 URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.06.022" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.06.022</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource review; adolescent; North America; palliative therapy; systematic review; human; child; female; male; childhood disease; Western Europe; family; sibling; family health; special situation for pharmacovigilance; scoping review; health equity Creator An entity primarily responsible for making the resource Broden EG; Boyden JY; Keller S; James R; Mooney-Doyle K Description An account of the resource Context: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused interventions that enhance child and family health. Objectives: Explore and describe the family-level impact of pediatric serious illness. Methods: We conducted a librarian-assisted scoping review using Arskey and O'Malley's approach. We searched PubMed, Scopus, CINAHL, and EMBASE databases for empirical publications from 2016 to 2021 that focused on families navigating serious pediatric illness published in English. Two reviewers assessed eligibility, with discrepancies resolved by a third. We used Covidence and REDCap for data management and extraction. Results: We screened 10,983 abstracts; 309 abstracts were included in full text screening. The final group of 52 citations was analyzed by the entire team. Most research was conducted in Western Europe and North America. The perspectives of parents of children with cancer were most frequently described; voices of seriously ill youth and their siblings were less often presented. Most of the research was descriptive qualitative, followed by descriptive quantitative. Few studies were mixed methods, inferential, or interpretive. Studies most often described parent, youth, and family experience with illness and less often explored family processes and relationships. Irrespective of the approach (i.e., qualitative, quantitative), few studies focused on families as the analytic unit or used family-level analysis techniques. Study participants were usually from local dominant populations and less often from historically marginalized communities. Conclusion: The robust, descriptive, and individual-level evidence describing family impact of serious pediatric illness provides a solid foundation for future research priorities. Stronger integration of family techniques and diverse family voices in pediatric palliative care research can clarify family processes, illuminate structural barriers, and inform interventions that are responsive to family needs. These steps will enhance the education, policy, and clinical provision of PPC to all who would benefit, thereby advancing health equity for children living with serious illness and their families. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.06.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.06.022</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Boyden JY Broden EG Child Childhood Disease Family Family Health Female Health Equity Human James R Journal of Pain and Symptom Management Keller S Male Mooney-Doyle K North America Palliative Therapy Review Scoping review September List 2024 Sibling special situation for pharmacovigilance Systematic Review Western Europe Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource June 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month June List 2024 URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.111" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.02.111</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Free and Appropriate: Navigating School Integration for Pediatric Patients Receiving Palliative Care or Hospice Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; inflammation; female; human; quality of life; palliative therapy; prognosis; hospice; school child; medical student; median survival time; education program; self report; adolescent; pediatric patient; conference abstract; drug therapy; knowledge gap; teamwork; symptom burden; physiotherapy; professionalism; special situation for pharmacovigilance; glioma; tumor burden; wheelchair Creator An entity primarily responsible for making the resource Maxwell E; Satty AM; French C; Purol N; Ullrich CK Description An account of the resource Outcomes: 1. Participants will self-report the ability to evaluate the complexities and nuances of school (re)integration for pediatric patients receiving palliative care or hospice. 2. By utilizing an interdisciplinary approach which includes families and schools, participants will self-report the ability to facilitate school (re)integration for children receiving palliative care or hospice. Key Message: Children receiving palliative care/hospice may have a period of clinical improvement in which school (re)entry is feasible, if aligned with patient/family goals. However, (re)integration is challenging to navigate, given patients' unique and complex needs. By using an interdisciplinary model and partnering with families and schools, palliative care/hospice teams can play a pivotal role in supporting school integration for these patients. Background(s): Given recent medical advances, children receiving palliative care (PC) or hospice may have periods of clinical improvement during which they wish to attend school. However, school (re)entry is challenging given these children's unique and complex needs. Families/schools are often unprepared to facilitate school integration, leaving patients without crucial supports/services, and leaving schools with insufficient knowledge of students' medical needs. Case: VF is a 6yo female with an H3K27M-mutant diffuse midline glioma initially treated with radiation and chemotherapy. When imaging five months post-diagnosis revealed disease progression, chemotherapy was discontinued. Given poor prognosis (median survival ~1 year) and high symptom burden, VF was admitted to hospice. Several months later, VF's clinical presentation drastically improved, attributed to a decrease in tumor burden/peritumoral inflammation and effective symptom management. She was back to the energetic child she had been, and began voicing the desire to attend school. Wanting to optimize her quality of life, VF's parents enrolled her in public school. Given her current needs, VF requires an Individualized Education Program to ensure necessary supports including a wheelchair-accessible building/classroom, 1:1 paraprofessional, occupational/physical therapies, and safety plan aligned with medical goals of care. Her parents' attempts to secure these supports have been unsuccessful and VF is currently attending school without them. Additionally, school staff lacks information about her health, leaving them unprepared to appropriately handle a medical emergency. VF's hospice team has now partnered with her family to secure needed accommodations, and is serving as a resource for the school to better support VF - medically and psychosocially - in the classroom. Conclusion(s): Children receiving PC/hospice can have times in which school (re)entry may be feasible, though challenging to navigate. PC/hospice teams are uniquely situated to work with both families and schools to ensure all parties have the knowledge and support needed to facilitate (re)integration. Keywords: Interdisciplinary Teamwork / Professionalism; Models of Palliative Care DeliveryCopyright © 2024 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.111" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.111</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Child conference abstract Drug Therapy Education Program Female French C Glioma Hospice Human Inflammation Journal of Pain and Symptom Management June List 2024 knowledge gap Maxwell E median survival time medical student Palliative Therapy pediatric patient Physiotherapy professionalism Prognosis Purol N Quality Of Life Satty AM School Child Self Report special situation for pharmacovigilance symptom burden Teamwork tumor burden Ullrich CK wheelchair Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource June 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month June List 2024 URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.385" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.02.385</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Not Just Small Adults: The Birth and Early Years of a Pediatric Hospice Program Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; United States; adult; female; human; male; palliative therapy; patient care; terminal care; hospice; distress syndrome; patient referral; adolescent; hospice care; infant; conference abstract; pediatric patient; teamwork; terminally ill patient; obstetric delivery; professionalism; special situation for pharmacovigilance; case manager Creator An entity primarily responsible for making the resource Macdonell-Yilmaz RE; Ritzau J Description An account of the resource Outcomes: 1. Participants will be able to describe the need for dedicated pediatric hospice support as well as the differences in care needs of children versus adults. 2. Participants will be able to identify at least three tangible actions to promote delivery of developmentally-appropriate care for pediatric hospice patients from within an adult hospice organization. Key Message: Nearly 50,000 children die each year in the United States, yet many don't benefit from hospice support due to limited access to pediatric hospice care. Yet the needs of terminally ill children differ fro those of adults. We describe the steps taken to successfully build a dedicated pediatric team within an established adult hospice organization. Introduction: Approximately 50,000 children die annually in the United States, yet less than 10% receive hospice care despite its demonstrated benefits. Unfortunately, many terminally ill children lack access to hospice; approximately one-third of hospices nationwide report having pediatric programs. Objective(s): To describe the process of developing a dedicated pediatric hospice team from within a large, adult-centered hospice organization. Method(s): HopeHealth, a well-established adult hospice program in RI and MA with an average daily census of >700 patients and a 30-bed inpatient facility, historically cared for up to 10-12 pediatric patients annually with an average daily census of two. Recognizing that pediatric patients' needs differ from adults', a specialized pediatric team was developed. Here we detail strategies utilized to build a program providing excellent, age-appropriate care for terminally ill children and their families. Result(s): Pediatric Supportive Services formally launched in fall 2021. Steps of development included: creating a separate pediatric Interdisciplinary Group (IDG); designing formalized training, including a yearlong lecture series, open to all staff; establishing standardized operating procedures for pediatric referrals and admissions; defining practices to ensure continuity of care, including having RN case managers (CMs) perform admissions and assigning "back-up" CMs for pediatric patients; equipping the inpatient hospice unit with developmentally-appropriate equipment and supplies; embedding a pediatric hospice and palliative care physician at a partner children's hospital; and instituting staff debriefing sessions following pediatric deaths. Conclusion(s): Over two years, the Pediatric Supportive Services team has grown to an average daily census of eight with nearly 30 new admissions in fiscal year 2023. Partnering with regional hospitals and healthcare organizations, it continues to successfully provide end-of-life care to children from birth to age 25. Keywords: Interdisciplinary Teamwork / Professionalism / Managing Suffering and DistressCopyright © 2024 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.385" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.385</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent Adult case manager Child conference abstract Distress Syndrome Female Hospice Hospice Care Human Infant Journal of Pain and Symptom Management June List 2024 MacDonell-Yilmaz RE Male obstetric delivery Palliative Therapy Patient Care Patient Referral pediatric patient professionalism Ritzau J special situation for pharmacovigilance Teamwork Terminal Care terminally Ill Patient United States Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource June 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month June List 2024 URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.418" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.02.418</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Improving Safe Opioid Prescribing for Pediatric Hospice and Palliative Care Patients Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource mental health; child; human; male; quality of life; palliative therapy; needs assessment; total quality management; opiate; hospice; controlled substance; patient safety; self report; conference abstract; drug therapy; electronic medical record; special situation for pharmacovigilance; Patient Health Questionnaire 2; time series analysis Creator An entity primarily responsible for making the resource Johansen W; Massmann C; Bray J; Daut E Description An account of the resource Outcomes: 1. Utilizing a quality improvement-approach, participants will self-report the ability to assess the implementation of several opioid safety components (i.e. opioid safety contract, open-ended question, and mental health screener) and how they may improve safety regarding opioid prescribing in pediatric hospice/palliative care patients. 2. Utilizing a quality improvement-approach, participants will self-report the ability to learn skills relating to discussing safe opioid prescribing with pediatric hospice/palliative care patients and their families. Key Message: The global aim of this QI project is to improve the safety of prescribing controlled substances in pediatric hospice/palliative care patients. The SMART aim of this QI project is to increase the percentage of opioid safety components completed on eligible pediatric hospice/palliative care patients from 0 to 80% from 10/31/22 to 2/28/23. Introduction/Context: Opiates can provide substantial improvement in quality of life for pediatric hospice/palliative care patients; however, misuse/abuse of these drugs can cause a direct threat to the safety of these patients and their families. Improving safe opioid practices would benefit the safety of patients being prescribed controlled substances which is a specific strategic goal of Saint Louis Children's Hospital. Method(s): After reviewing the current literature, we defined several safe opioid practices through the creation of several opioid safety components: opioid safety contract, mental health screener (PHQ-2 and GAD-2), and open-ended questions relating to opioid prescribing. Following a needs assessment, we created a high-level process map and Pareto chart reflecting potential barriers to utilization of opioid safety components. A key driver diagram was created and several PDSA cycles were completed with cumulative data being collected and displayed on a time-series chart for each of the opioid safety components. Pre/Post surveys were also created to assess family's perception relating to opioid prescribing, administration, and education. Result(s): The process measures were the cumulative proportions of eligible patients which had an opioid safety component recorded in the electronic medical record. Those proportions are as follows: 69% for opioid contract, 42% for mental health screener, and 46% for open-ended question. We had 2 outcomes measures: 1)pre/post surveys sent to both our team as well as families assessing project impact and 2)days between non-compliance related to signed opioid safety contracts (displayed on a T-chart). Conclusion(s): We have adopted the opioid safety contract into our daily practice and abandoned the mental health screener and open-ended questions. We are investigating ways to increase days between non-compliant events regarding the opioid safety contract. We are hopeful to spread this opioid safety contract other departments at Saint Louis Children's Hospital. Keywords: Quality Improvement /Advocacy / Policy/ RegulationsCopyright © 2024 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.418" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.418</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Bray J Child conference abstract controlled substance Daut E Drug Therapy electronic medical record Hospice Human Johansen W Journal of Pain and Symptom Management June List 2024 Male Massmann C Mental Health Needs Assessment Opiate Palliative Therapy Patient Health Questionnaire 2 Patient Safety Quality Of Life Self Report special situation for pharmacovigilance time series analysis Total Quality Management Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource June 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month June List 2024 URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.505" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.02.505</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Characterizing Pain in Pediatric Palliative Care Clinical Documentation Publisher An entity responsible for making the resource available Journal of Pain and Symptom Management Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; female; human; major clinical study; male; newborn; retrospective study; palliative therapy; pain; childhood cancer; consultation; ethnicity; content analysis; school child; adolescent; therapy; interrater reliability; conference abstract; drug therapy; electronic health record; Hispanic; clinician; special situation for pharmacovigilance; social life Creator An entity primarily responsible for making the resource Carney KB; Wilkes J; Moore D; Aderibigbe T; Longtin E; Linder L Description An account of the resource Outcomes: 1. Attendees will be able to identify the methods used to abstract and characterize pain from the electronic health record of children and adolescents with cancer receiving palliative care services. 2. Attendees will be able to describe the trends in pain documentation across a cohort of children and adolescents with cancer receiving palliative care services. Key Message: Pediatric palliative care teams can help to address complex pain care needs of children and adolescents with cancer. Our study evaluated documentation of pain characteristics in pediatric palliative care team clinical notes. While physical characteristics were commonly documented, pain's impact on well-being and daily living were less evident. Importance: Although pain reporting and treatment among children and adolescents with cancer has improved, less focus has been on capturing pain characteristics to tailor pain care strategies. Clinical documentation by pediatric palliative care teams may provide valuable insights to evaluating multifaceted pain care needs of children with cancer. Objective(s): To characterize pediatric palliative clinicians' documentation of pain characteristics among children and adolescents with cancer. Scientific Methods Utilized: We retrospectively evaluated electronic health records of 115 pediatric oncology patients (61 males; 6-17 years, median 13 years) who initiated palliative care services at a children's hospital in the Intermountain West between October 2017-January 2021. Our team abstracted symptom care-related statements from 661 palliative care consultation and progress notes. We used content analysis with a modified coding scheme based on standards for pain outcome measures in pediatric pain clinical trials. We achieved K >=.90 inter-rater reliability. Result(s): The sample included 29 (25.2%) patients with Hispanic/Latino ethnicity, 13 (11.3%) who spoke a language other than English, and 56 (48.7%) who lived 35 miles or greater from the children's hospital. We coded 499 pain characteristics across 68 (59.1%) patients. The most frequently documented characteristic was location (56 patients, 165 statements), followed by severity (47 patients, 109 statements), and frequency (32 patients, 73 statements). Descriptions of pain type, physical/functional impact, and escalating factors were documented in less than 25% of patients. The influence of pain on the patient's overall well-being and social life was evident in less than 10% of patients. Conclusion(s): Pediatric palliative clinicians frequently documented physical pain characteristics for children with cancer, however evidence illustrating pain-related life impact was inconsistent. Impact: Pain is a priority symptom for children and adolescents with cancer. The standards for pain outcome measures provide a useful framework for evaluating pediatric palliative care documentation and can guide future research.Copyright © 2024 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2024.02.505" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.505</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Aderibigbe T Adolescent Carney KB Child Childhood Cancer Clinician conference abstract Consultation Content Analysis Drug Therapy electronic health record Ethnicity Female Hispanic Human interrater reliability Journal of Pain and Symptom Management June List 2024 Linder L Longtin E Major Clinical Study Male Moore D Newborn Pain Palliative Therapy Retrospective Study School Child social life special situation for pharmacovigilance Therapy Wilkes J Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April List 2024 URL Address <a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020234</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource The Use of Cannabinoids in Pediatric Palliative Care-A Retrospective Single-Center Analysis Publisher An entity responsible for making the resource available Children Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; Palliative Care; diagnosis; article; female; human; male; retrospective study; Cannabinoids; spasticity; epilepsy; quality of life; outpatient; palliative therapy; pain; anxiety; clinical article; school child; human tissue; side effect; adolescent; therapy; drug dose increase; drug combination; drug therapy; nausea; adverse drug reaction; pediatric patient; loss of appetite; paresis; restlessness; special situation for pharmacovigilance; cannabinoid; add on therapy; decreased appetite Creator An entity primarily responsible for making the resource Tagsold D; Toni I; Trollmann R; Woelfle J; Gravou-Apostolatou C Description An account of the resource This data analysis aimed to systematically analyze a pediatric patient population with a life-limiting disease who were administered cannabinoids. It was a retrospective single-center analysis of patients under supervision of the specialized outpatient pediatric palliative care (SOPPC) team at the Department of Pediatrics and Adolescent Medicine of the Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU). Thirty-one patients with a primary diagnosis of neuropediatric, oncologic, metabolic, and cardiologic categories were included. The indications we identified were spasticity, pain, restlessness, anxiety, loss of appetite, epilepsy, and paresis. Certain aspects of quality of life were improved for 20 of 31 patients (64.5%). For nine patients (29%), no improvement was detected. No conclusions could be drawn for two patients (6.5%). Adverse events were reported for six of the thirty-one patients (19.4%). These were graded as mild, including symptoms such as restlessness, nausea, and behavioral issues. We detected no clinically relevant interactions with other medications. We collected fundamental data on the use of cannabinoids by pediatric palliative patients. Cannabinoids are now frequently administered in pediatric palliative care. They seem to be safe to use and should be considered an add-on therapy for other drug regimens. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3390/children11020234" target="_blank" rel="noreferrer noopener">10.3390/children11020234</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 add on therapy Adolescent Adverse Drug Reaction anxiety April List 2024 Article Cannabinoid Cannabinoids Child Children Clinical Article decreased appetite Diagnosis drug combination drug dose increase Drug Therapy Epilepsy Female Gravou-Apostolatou C Human Human Tissue Loss Of Appetite Male Nausea Outpatient Pain Palliative Care Palliative Therapy paresis pediatric patient Quality Of Life restlessness Retrospective Study School Child Side Effect Spasticity special situation for pharmacovigilance Tagsold D Therapy Toni I Trollmann R Woelfle J Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April List 2024 URL Address <a href="http://doi.org/10.1097/NJH.0000000000001018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NJH.0000000000001018</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Changing the Landscape of the Neighborhood: The Expanding Role of the Pediatric Palliative Advanced Practice Registered Nurse Publisher An entity responsible for making the resource available Journal of Hospice and Palliative Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; article; human; palliative therapy; pharmacology; adolescent; evidence based practice; emergency care; medical society; consensus; special situation for pharmacovigilance; neighborhood; registered nurse Creator An entity primarily responsible for making the resource Sartor N; Bass AK; Overstreet K Description An account of the resource There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical complexity live longer, and the demand for pediatric palliative care is growing. As programs expand to meet this need, there are new opportunities for pediatric palliative APRNs to practice outside acute care consultative models, within large children's hospitals. The aim of this article was to describe the expanding role of the pediatric palliative APRN using a progressive case study that describes how these expanding roles can collaborate using evidence-based practice and expert consensus to define their roles. If pediatric palliative APRNs hesitate to define their practice, others will define it for them. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/NJH.0000000000001018" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000001018</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent April List 2024 Article Bass AK Child Consensus Emergency Care evidence based practice Human Journal of Hospice and Palliative Nursing Medical Society neighborhood Overstreet K Palliative Therapy pharmacology registered nurse Sartor N special situation for pharmacovigilance Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April List 2024 URL Address <a href="http://doi.org/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-024-01394-7</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions Publisher An entity responsible for making the resource available BMC Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; Adolescent; Questionnaires; article; controlled study; female; human; male; palliative therapy; clinical article; caregiver; school child; human experiment; prospective study; adolescent; wakefulness; therapy; decision making; drug therapy; chronic disease; questionnaire; special situation for pharmacovigilance; actimetry; diagnostic procedure; protocol; sleep; actigraph; sleep efficiency; sleep time; stage 1 sleep; wake after sleep onset Creator An entity primarily responsible for making the resource Kubek LA; Claus B; Zernikow B; Wager J Description An account of the resource Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other measures of sleep diagnostics. Methods: In this monocentric prospective study N = 26 children and adolescents with life-limiting conditions treated on a pediatric palliative care unit were assessed. For three consecutive nights they wore an actigraph; the 24-hours sleep protocol documented by nurses and the Sleep Screening for Children and Adolescents with Complex Chronic Conditions (SCAC) answered by parents were analyzed. Patient characteristics and the parameters sleep onset, sleep offset, wake after sleep onset (WASO), number of wake phases, total sleep time (TST) and sleep efficiency (SE) were descriptively examined. Percentage bend correlations evaluated the three measures' concordance. Results: Descriptively, and except for the number of waking episodes, the different measures' estimations were comparable. Significant correlations existed between actigraphy and the sleep protocol for sleep onset (r = 0.83, p = < 0.001) and sleep offset (r = 0.89, p = < 0.001), between actigraphy and SCAC for SE (r = 0.59, p = 0.02). Conclusion: Agreement of actigraphy with the focused sleep measures seems to be basically given but to varying degrees depending on the considered parameters. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-024-01394-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01394-7</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 actigraph actimetry Adolescent April List 2024 Article BMC Palliative Care Caregiver Child Chronic Disease Claus B Clinical Article Controlled Study Decision Making diagnostic procedure Drug Therapy Female Human Human Experiment Kubek LA Male Palliative Therapy Prospective Study protocol Questionnaire Questionnaires School Child Sleep sleep efficiency sleep time special situation for pharmacovigilance stage 1 sleep Therapy Wager J wake after sleep onset Wakefulness Zernikow B Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April List 2024 URL Address <a href="http://doi.org/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.cppeds.2024.101569</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource How to move forward in shared decision-making in pediatric palliative care Publisher An entity responsible for making the resource available Current Problems in Pediatric and Adolescent Health Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource child; Palliative Care; Decision Making; article; human; palliative therapy; clinical article; adolescent; therapy; infant; shared decision making; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Joren CY; Aris-Meijer JL; Verhagen AAE; Lantos J Description An account of the resource Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality pediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality pediatric palliative care around the globe. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.cppeds.2024.101569" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2024.101569</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent April List 2024 Aris-Meijer JL Article Child Clinical Article Current Problems in Pediatric and Adolescent Health Care Decision Making Human Infant Joren CY Lantos J Palliative Care Palliative Therapy shared decision making special situation for pharmacovigilance Therapy Verhagen AAE Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April List 2024 URL Address <a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpeds.2024.113930</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment Publisher An entity responsible for making the resource available Journal of Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality Creator An entity primarily responsible for making the resource Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J Description An account of the resource Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adult April List 2024 Article Beck AF Child Chronic Disease Cohort Analysis Controlled Study Corley AMS Cortezzo DE economic inequality Ethnicity Female Gestational Age Hispanic Human Jones MN Journal of Pediatrics Major Clinical Study Male Medicaid Morbidity Mortality Multidisciplinary team Neurologic Examination Only Child Patient Referral primary medical care racial disparity racism Referral And Consultation Retrospective Study Simpson SL Socioeconomic Factors special situation for pharmacovigilance tertiary care center Thienprayoon R Thomson J Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource March 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month March List 2024 URL Address <a href="http://doi.org/10.1017/S1478951523001852" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951523001852</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study Publisher An entity responsible for making the resource available Palliative and Supportive Care Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource burnout; care behavior; health care personnel; palliative therapy; psychologist; Reiki; alternative medicine; article; child; child psychology; clinical practice; clinical psychology; controlled study; diastolic blood pressure; emotional stress; heart rate; human; Italy; nurse; oxygen saturation; Palliative Care; Pilot Projects; pilot study; self care; special situation for pharmacovigilance; systolic blood pressure; work environment; workplace Creator An entity primarily responsible for making the resource Zucchetti G; Ciappina S; Bottigelli C; Campione G; Parrinello A; Piu P; Lijoi S; Quarello P; Fagioli F Description An account of the resource OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. METHOD(S): Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. RESULT(S): Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention. SIGNIFICANCE OF RESULTS: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1017/S1478951523001852" target="_blank" rel="noreferrer noopener">10.1017/S1478951523001852</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 alternative medicine Article Bottigelli C Burnout Campione G care behavior Child Child Psychology Ciappina S Clinical Practice clinical psychology Controlled Study diastolic blood pressure Emotional Stress Fagioli F Health Care Personnel Heart Rate Human Italy Lijoi S March List 2024 Nurse oxygen saturation Palliative And Supportive Care Palliative Care Palliative Therapy Parrinello A Pilot Projects Pilot Study Piu P Psychologist Quarello P Reiki Self Care special situation for pharmacovigilance systolic blood pressure work environment Workplace Zucchetti G Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource March 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month March List 2024 URL Address <a href="http://doi.org/10.1177/13674935231225714" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935231225714</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Evaluation of paediatric palliative care ambulance plans: A retrospective study Publisher An entity responsible for making the resource available Journal of Child Health Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource ambulance; palliative therapy; article; Australia; child; data completeness; drug therapy; drug use; human; male; New South Wales; Palliative Care; paramedical personnel; Retrospective Studies; retrospective study; scope of practice; special situation for pharmacovigilance; terminal care Creator An entity primarily responsible for making the resource Wan J; Vaughan A; Shepherd E; Coombs S; Trethewie S; Jaaniste T Description An account of the resource Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/13674935231225714" target="_blank" rel="noreferrer noopener">10.1177/13674935231225714</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 ambulance Article Australia Child Coombs S data completeness Drug Therapy Drug Use Human Jaaniste T Journal Of Child Health Care Male March List 2024 New South Wales Palliative Care Palliative Therapy paramedical personnel Retrospective Studies Retrospective Study Scope Of Practice Shepherd E special situation for pharmacovigilance Terminal Care Trethewie S Vaughan A Wan J Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1186/s12904-023-01293-3" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01293-3</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Palliative care for children: methodology for the development of a national clinical practice guideline Publisher An entity responsible for making the resource available BMC Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; article; human; palliative therapy; systematic review; advance care planning; randomized controlled trial; shared decision making; practice guideline; therapy; psychosocial care; qualitative research; bereavement; drug administration; special situation for pharmacovigilance; evidence based medicine; methodology Creator An entity primarily responsible for making the resource van Teunenbroek KC; Kremer LCM; Verhagen AAE; Verheijden JMA; Rippen H; Borggreve BCM; Michiels EMC; Mulder RL Description An account of the resource Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-023-01293-3" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01293-3</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Advance Care Planning Article Bereavement BMC Palliative Care Borggreve BCM Child Drug Administration evidence based medicine February List 2024 Human Kremer LCM Methodology Michiels EMC Mulder RL Palliative Therapy Practice Guideline psychosocial care Qualitative Research Randomized Controlled Trial Rippen H shared decision making special situation for pharmacovigilance Systematic Review Therapy van Teunenbroek KC Verhagen AAE Verheijden JMA Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1007/s00431-023-05330-4" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-023-05330-4</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Evaluating quality of life in pediatric palliative care: a cross-sectional analysis of children's and parents' perspectives Publisher An entity responsible for making the resource available European Journal of Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; article; female; human; male; perception; palliative therapy; quality of life; clinical article; parent; cross-sectional study; adolescent; voice; drug therapy; nonparametric test; psychologic assessment; disease management; special situation for pharmacovigilance; sociodemographics Creator An entity primarily responsible for making the resource Toro-Perez D; Limonero JT; Guillen M; Bolance C; Vilarrubi SN; Camprodon-Rosanas E Description An account of the resource The patient's perspective is an essential component of understanding the individual experience of suffering in children with palliative needs, but it is a perspective that is often overlooked. The aim of this study was to compare the perception of quality of life (QoL) of children with life-limiting and life-threatening conditions expressed by the children themselves and their parents. Through a cross-sectional study, the responses of 44 parent-child dyads were obtained and the analysis was performed with the statistics based on Student's t distribution and non-parametric tests. Children value QoL more positively (mean = 6.95, SD = 1.85) than their parents (mean = 5.39, SD = 2.43). This difference exists even if we consider sociodemographic and disease variables. The presence of exacerbated symptoms is the situation in which both parents (mean = 3.70; SD = 1.95) and children (mean = 5.60; SD = 1.17) evaluate QoL more negatively. Conclusions: Children have a more optimistic view than their parents. When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. The voice of the child and that of the family members can be collected to create a "family voice" and can be complementary. What is known: • Children with life-limiting conditions experience multiple and changing symptoms that affect their QoL. • The child's perspective is often overlooked. What is new: • Children value QoL more positively than their parents do, even if we control for sociodemographic variables and the disease itself. • When the child is the one who reports a lower QoL score than their parent, the child should be carefully monitored. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1007/s00431-023-05330-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05330-4</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Adolescent Article Bolance C Camprodon-Rosanas E Child Clinical Article Cross-sectional Study Disease Management Drug Therapy European Journal of Pediatrics February List 2024 Female Guillen M Human Limonero JT Male nonparametric test Palliative Therapy Parent Perception psychologic assessment Quality Of Life sociodemographics special situation for pharmacovigilance Toro-Perez D Vilarrubi SN Voice Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13925</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis Publisher An entity responsible for making the resource available Health Expectations Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness Creator An entity primarily responsible for making the resource Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M Description An account of the resource Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Adolescent Adverse Drug Reaction Aged Article Burgess A Child Child Parent Relation Controlled Study Disability Drug Therapy February List 2024 Female Health Care System Health Expectations Hospital care Human Intellectual Impairment Interpersonal Communication Interview kindness Long J Lucien A Male Ong N Palliative Therapy Parent Patient Safety Pediatric Hospital Preschool Child Qualitative Research School Child Semi Structured Interview Side Effect special situation for pharmacovigilance Thematic Analysis Walton M Weise J Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1136/jme-2023-108912" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/jme-2023-108912</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Navigating parental requests: considering the relational potential standard in paediatric end-of-life care in the paediatric intensive care unit Publisher An entity responsible for making the resource available Journal of Medical Ethics Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; terminal care; article; human; palliative therapy; medical decision making; pediatrics; clinical article; school child; physician; pediatric intensive care unit; intensive care; medical ethics; adolescent; drug therapy; ethical dilemma; clinician; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Kingsley J; Clark J; Lewis-Newby M; Dudzinski DM; Diekema D Description An account of the resource Families and clinicians approaching a child's death in the paediatric intensive care unit (PICU) frequently encounter questions surrounding medical decision-making at the end of life (EOL), including defining what is in the child's best interest, finding an optimal balance of benefit over harm, and sometimes addressing potential futility and moral distress. The best interest standard (BIS) is often marshalled by clinicians to help navigate these dilemmas and focuses on a clinician's primary ethical duty to the paediatric patient. This approach does not consider a clinician's potential duty to the patient's family. This paper argues that when a child is dying in the PICU, the physician has a duty to serve both the patient and the family, and that in some circumstances, the duty to serve the family becomes as important as that owed to the child. We detail the limitations of the BIS in paediatric EOL care and propose the relational potential standard as an additional ethical framework to guide our decisions. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/jme-2023-108912" target="_blank" rel="noreferrer noopener">10.1136/jme-2023-108912</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Adolescent Article Child Clark J Clinical Article Clinician Diekema D Drug Therapy Dudzinski DM Ethical dilemma February List 2024 Human Intensive Care Journal of Medical Ethics Kingsley J Lewis-Newby M Medical Decision Making Medical Ethics Palliative Therapy Pediatric Intensive Care Unit Pediatrics Physician School Child special situation for pharmacovigilance Terminal Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/tsaco-2023-001143</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Optimizing resource utilization: Palliative care consultations in critically ill pediatric trauma patients Publisher An entity responsible for making the resource available Trauma Surgery and Acute Care Open Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; pediatric intensive care unit; school child; consultation; clinical feature; practice guideline; surgery; adolescent; infant; critically ill patient; intensive care unit; electronic medical record; traumatic brain injury; toddler; child abuse; total quality management; special situation for pharmacovigilance; childhood trauma; injury Creator An entity primarily responsible for making the resource Goswami J; Baxter J; Schiltz BM; Elsbernd TA; Arteaga GM; Klinkner DB Description An account of the resource The American College of Surgeons Trauma Quality Improvement Program (TQIP) and Committee on Trauma released a best practice guideline for palliative care in trauma patients in 2017. Utilization of pediatric palliative care services for pediatric trauma patients has not been studied. We sought to identify patients who received the consultation and develop criteria for patients who would benefit from these resources at our institution. Methods: The institutional pediatric trauma registry was queried to identify all admissions age 0-17 years old to the pediatric intensive care unit (PICU) or trauma ICU (TICU) from 2014 to 2021. Demographic and clinical features were obtained from the registry. Electronic medical records were reviewed to identify and review consultations to the ComPASS team. A clinical practice guideline (CPG) for palliative care consultations was developed based on the TQIP guideline and applied retrospectively to patients admitted 2014-2021. The CPG was then prospectively applied to patients admitted from March through November 2022. Results: A total of 399 patients were admitted to the PICU/TICU. There were 30 (7.5%) deaths, 20 (66.7%) within 24 hours of admission. Palliative care consultations were obtained in 21 (5.3%). Of these, 10 (47.6%) patients were infants/toddlers <age 2 years, all had traumatic brain injury, 3 (14.3%) were for suspected child abuse, and many were for "goals of care" or family meetings. When the CPG was applied retrospectively, 109 (27.3%) patients met criteria for consultation. After 8 months of prospective implementation of this CPG, palliative care consultation was obtained in 25% (7 of 28) of pediatric trauma patients admitted to the ICU. Conclusion: Our results demonstrate underused potential of the palliative care team to impact the hospital course of critically ill pediatric trauma patients. Ongoing studies will analyze the utility of CPG implementation for early involvement of palliative services in critically ill pediatric trauma patients. Level of evidence: Level III (retrospective cohort). Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/tsaco-2023-001143" target="_blank" rel="noreferrer noopener">10.1136/tsaco-2023-001143</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Adolescent Arteaga GM Article Baxter J Child Child Abuse childhood trauma Clinical Feature Consultation Controlled Study Critically Ill Patient electronic medical record Elsbernd TA February List 2024 Female Goswami J Human Infant injury Intensive Care Unit Klinkner DB Major Clinical Study Male Palliative Therapy Pediatric Intensive Care Unit Practice Guideline Retrospective Study Schiltz BM School Child special situation for pharmacovigilance Surgery toddler Total Quality Management Trauma Surgery and Acute Care Open traumatic brain injury Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1177/02692163231214471" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231214471</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis Publisher An entity responsible for making the resource available Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; diagnosis; article; female; human; male; palliative therapy; clinical article; content analysis; caregiver; parent; school child; care behavior; social media; father; secondary analysis; needs assessment; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Fisher V; Atkin K; Ewing G; Grande G; Fraser LK Description An account of the resource The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. Aim: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. Design: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. Setting: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. Results: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. Conclusion: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric). Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/02692163231214471" target="_blank" rel="noreferrer noopener">10.1177/02692163231214471</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Article Atkin K care behavior Caregiver Child Clinical Article Content Analysis Diagnosis Ewing G Father February List 2024 Female Fisher V Fraser LK Grande G Human Male Needs Assessment Palliative Medicine Palliative Therapy Parent School Child Secondary Analysis social media special situation for pharmacovigilance Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1097/NJH.0000000000000982" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NJH.0000000000000982</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Development of an Institution-Wide Pediatric End-of-Life Summit Publisher An entity responsible for making the resource available Journal of Hospice and Palliative Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; article; human; terminal care; school child; medical society; bereavement; teaching hospital; clinician; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Edson J; Abecassis L; Beke DM; McGorman T Description An account of the resource End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized education, a small group of bereavement coordinators created an institution-wide pediatric EOL summit at a large urban pediatric teaching hospital. One hundred forty-five clinicians from 14 diverse disciplines attended the first annual pediatric EOL summit. A survey was sent to the participants for feedback. The survey results suggested an overwhelmingly positive response to the summit. Continuing to provide this educational conference is critical to improving care for patients and families, particularly at the end of life. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/NJH.0000000000000982" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000982</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Abecassis L Article Beke DM Bereavement Child Clinician Edson J February List 2024 Human Journal of Hospice and Palliative Nursing McGorman T Medical Society School Child special situation for pharmacovigilance teaching hospital Terminal Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February List 2024 URL Address <a href="http://doi.org/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.arcped.2023.09.014</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Withholding life support for children with severe neurological impairment: Prevalence and predictive factors prior to admission in the PICU Publisher An entity responsible for making the resource available Archives de Pediatrie Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; intensive care unit; assisted ventilation; pediatric intensive care unit; intensive care; therapy; pediatrician; prevalence; functional status; disability; special situation for pharmacovigilance Creator An entity primarily responsible for making the resource Duval C; Porcheret F; Toulouse J; Alexandre M; Roulland C; Viallard ML; Brossier D Description An account of the resource Our study aimed to evaluate the prevalence and predictive factors of withholding life support for children suffering from severe neurological impairment before admission to the pediatric intensive care unit (PICU). Method: Children under 18 years of age with severe neurological impairment, who were hospitalized between January 2006 and December 2016, were included in this retrospective study. They were allocated to a withholding group or a control group, depending on whether life support was withheld or not, before admission to the PICU. Results: Overall, 119 patients were included. At admission to the PICU, the rate of withholding life support was 10 % (n = 12). Predictive factors were: (1) a previous stay in the PICU (n = 11; 92 %, p<0.01, odds ratio [OR]: 14 [2-635], p = 0.001); (2) the need for respiratory support (n = 5; 42 %, p = 0.01, OR: 6 [1-27], p = 0.01); (3) the need for feeding support (n = 10; 83 %, p = 0.01, OR: 10 [2-100], p = 0.001); and (4) a higher functional status score (FSS: 16 [12.5-19] vs. 10 [8-13], p<0.01). Conclusion: The withholding of life support for children suffering from severe neurological impairment appeared limited in our pediatric department. The main predictor was at least one admission to the PICU, which raised the question of the pediatrician's role in the decision to withhold life support. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.arcped.2023.09.014" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.09.014</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Alexandre M Archives de Pediatrie Article assisted ventilation Brossier D Child Controlled Study Disability Duval C February List 2024 Female Functional Status Human Intensive Care Intensive Care Unit Major Clinical Study Male Palliative Therapy Pediatric Intensive Care Unit Pediatrician Porcheret F Prevalence Retrospective Study Roulland C special situation for pharmacovigilance Therapy Toulouse J Viallard ML