1 40 5 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 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 February List 2025 URL Address <a href="http://doi.org/10.1542/peds.2024-067876" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2024-067876</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 "Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication Publisher An entity responsible for making the resource available 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; diagnosis; article; controlled study; female; human; male; coping; needs assessment; clinical article; interview; content analysis; interpersonal communication; physician; qualitative research; communication skill; emergency ward; semi structured interview; knowledge gap; pediatric patient; conversation; nurse; acute disease; family centered care; family support; family structure; clinician; best practice; self-reflection Creator An entity primarily responsible for making the resource Kotler H; Hinds PS; Wolfe AHJ Description An account of the resource OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is heterogenous, clinician expertise in EOL communication is essential to providing family-centered care. In this study, we explored PED physician and nurse experiences with communication when eliciting EOL values, including factors specified to the PED environment, clinician perceptions of family supports and preferences, and clinicians' self-reflection of their skills and challenges in this sphere. <br/>METHOD(S): We performed a prospective qualitative study using semistructured interviews of PED physicians and nurses recruited from a quaternary care center. Thematic content analysis was performed on the transcribed interviews to identify codes and, ultimately, themes. <br/>RESULT(S): We interviewed 17 emergency department clinicians, including 10 physicians and 7 nurses. Thematic content analysis revealed 6 salient themes. The first theme related to contextual factors of the emergency department environment. Two additional themes related to patient and family characteristics, including unique patient and family factors and clinician interpretation of parental/family needs. Lastly, we found 3 clinician-focused themes including knowledge gaps in EOL communication, communication styles and priorities in EOL conversations with families, and coping with ethical challenges. <br/>CONCLUSION(S): PED clinicians report communication-related challenges to providing optimal care for families and patients with life-limiting diagnoses. Participants self-identified gaps in communication skills in this area. Future studies should focus on clinician educational interventions on the basis of this needs assessment and include family perspectives to develop best practice.<br/>Copyright &#xa9; 2024 by the American Academy of Pediatrics. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.2024-067876" target="_blank" rel="noreferrer noopener">10.1542/peds.2024-067876</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 Acute Disease Article Best Practice Child Clinical Article Clinician Communication Skill Content Analysis Controlled Study Conversation Coping Diagnosis Emergency Ward Family Centered Care Family Structure family support February List 2025 Female Hinds PS Human Interpersonal Communication Interview knowledge gap Kotler H Male Needs Assessment Nurse pediatric patient Pediatrics Physician Qualitative Research self-reflection Semi Structured Interview Wolfe AHJ 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 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 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/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0322</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 Do Children With Medical Complexity Die? A Scoping Review Publisher An entity responsible for making the resource available Journal of Palliative 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 Child; child; cohort analysis; human; chronic disease; quality of life; North America; systematic review; review; health care utilization; personal experience; Only Child; clinical practice; child death; qualitative research; knowledge gap; place of death; chronic patient; biological marker Creator An entity primarily responsible for making the resource Chan Ng GM; Bourassa MH; Patel H Description An account of the resource Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0322</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 April List 2024 biological marker Bourassa MH Chan Ng GM Child Child Death Chronic Disease Chronic Patient Clinical Practice Cohort Analysis Health Care Utilization Human Journal of Palliative Medicine knowledge gap North America Only Child Patel H Personal Experience Place Of Death Qualitative Research Quality Of Life Review Systematic Review 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 2023 Special Edition 5 - Low Resource Setting 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 2023 SE5 - Low Resource Setting URL Address <a href="http://doi.org/10.1186/s12904-023-01177-6" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01177-6</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 palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study 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; child; Palliative Care; adult; article; controlled study; female; human; male; preschool child; palliative therapy; clinical article; interview; parent; Only Child; school child; health care personnel; qualitative research; descriptive research; child health care; health care quality; pediatric ward; adolescent; infant; thematic analysis; medical record; knowledge gap; health care need; Papua New Guinea; acute lymphoblastic leukemia/di [Diagnosis]; bronchiectasis/di [Diagnosis]; cerebral palsy/di [Diagnosis]; congenital heart disease/di [Diagnosis]; congenital malformation/di [Diagnosis]; dyspnea/co [Complication]; germ cell tumor/di [Diagnosis]; Guillain Barre syndrome/di [Diagnosis]; hemosiderosis/di [Diagnosis]; Human immunodeficiency virus infection/di [Diagnosis]; job experience; malignant neoplasm/di [Diagnosis]; Melanesia; neuroblastoma/di [Diagnosis]; Pacific islands; pain/co [Complication]; pulmonary hypertension/di [Diagnosis]; retinoblastoma/di [Diagnosis]; thalassemia/di [Diagnosis]; tuberculosis/di [Diagnosis] Creator An entity primarily responsible for making the resource Watch V; Anga G; Kilalang C; Pulsan F; Vince JD; Duke T Description An account of the resource Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers. Methods: A descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis. Results: Twenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder. Conclusion: There is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-023-01177-6" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01177-6</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 2023 SE5 - Low Resource Setting acute lymphoblastic leukemia/di [Diagnosis] Adolescent Adult Anga G Article BMC Palliative Care bronchiectasis/di [Diagnosis] Cerebral Palsy/di [Diagnosis] Child Child Health Care Clinical Article congenital heart disease/di [Diagnosis] congenital malformation/di [Diagnosis] Controlled Study Descriptive Research Duke T dyspnea/co [Complication] Female germ cell tumor/di [Diagnosis] Guillain Barre syndrome/di [Diagnosis] health care need Health Care Personnel Health Care Quality hemosiderosis/di [Diagnosis] Human Human immunodeficiency virus infection/di [Diagnosis] Infant Interview job experience Kilalang C knowledge gap Male malignant neoplasm/di [Diagnosis] Medical Record Melanesia neuroblastoma/di [Diagnosis] Only Child Pacific Islands Pain/co [complication] Palliative Care Palliative Therapy Papua New Guinea Parent pediatric ward Preschool Child pulmonary hypertension/di [Diagnosis] Pulsan F Qualitative Research retinoblastoma/di [Diagnosis] School Child thalassemia/di [Diagnosis] Thematic Analysis tuberculosis/di [Diagnosis] Vince JD Watch V