1 40 10 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.210" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2024-rcpch.210</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 DEVELOPMENT OF A CHILDREN'S HOSPICE PERINATAL SERVICE TO IMPROVE PERINATAL PALLIATIVE CARE - 10 YEARS ON 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 hospice; palliative therapy; aged; awareness; bereavement; catchment area; child; conference abstract; diagnosis; extended family; hospice care; human; multidisciplinary team; newborn period; patient referral; positive feedback; trisomy 18 Creator An entity primarily responsible for making the resource Williams K Description An account of the resource Objectives Perinatal palliative care is an evolving specialty committed to providing care for fetuses and babies with a life limiting condition diagnosed in the antenatal or neonatal period. It also includes supporting the parents and extended family. Initially, referrals for hospice support were few and far between; some years we received no perinatal referrals whatsoever. When beginning this work around a decade ago, our aims were to: Increase awareness of hospice services amongst tertiary centres across Cheshire and Merseyside. Consistently offer choice in place of care and death for families; hospital, hospice or home. Provide specialist palliative care through diagnosis, birth, child's life, and death. Methods Links have been developed in foetal medicine and neonatal units across the hospice catchment area. This included regular presence at foetal medicine clinics, neonatal ward rounds and education about hospice services. This created good collaborative working between hospital, hospice and families. This did not happen overnight and took perseverance and consistency. Results Since the initial development of links in 2013, referrals (aged 0-1 years) accepted for hospice care increased from 0-4 per year to over 150. This has impacted on all services offered by the hospice, including a huge increase in neonatal referrals for the use of the bereavement suite. The value of hospice services has been clearly acknowledged by tertiary centres, along with very positive feedback direct from families. 'We miss Emmalyn every day but we are so thankful that Claire House helped us create such happy memories that we can cherish forever'. Victoria, mum of Emmalyn who was diagnosed with Trisomy 18 and lived for 26 days. This service was run as a jointly funded pilot project between the (then) Liverpool CCG and Claire House. The pilot project ran for an initial two year period and, following detailed evaluation, was then commissioned by Liverpool CCG. After discussion and presentation of evidence, St Helens Place also commissioned this service. The commissioning of the service has enabled significant expansion of the perinatal offer. Conclusion Clearly the children's hospice has a definitive role within perinatal palliative care. The presence of hospice staff within tertiary centres has enabled good palliative parallel care planning with all relevant professionals of the multi-disciplinary team. This has resulted in seamless and compassionate support for families, with a consistent choice in preferred place of care. We aim to explore additional funding to continue to strengthen our service offer. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2024-rcpch.210" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2024-rcpch.210</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 Aged Archives of Disease in Childhood Awareness Bereavement catchment area Child conference abstract Diagnosis extended family Hospice Hospice Care Human Multidisciplinary team newborn period October List 2024 Palliative Therapy Patient Referral positive feedback Trisomy 18 Williams K 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 August 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 August List 2024 URL Address <a href="http://doi.org/10.1002/14651858.CD013329.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD013329.pub2</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 Comprehensive care programmes for children with medical complexity Publisher An entity responsible for making the resource available Cochrane Database of Systematic Reviews Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource social determinants of health; Quality of Health Care; quality of life; Program Evaluation; Randomized Controlled Trials as Topic; infant; decision making; Child; Humans; Adolescent; Child Preschool; Chronic Disease; adolescent; Infant; Comprehensive Health Care; epidemiology; caregiver; chronic disease; social worker; hospital admission; Quality of Life; outcome assessment; preschool child; emergency health service; child health care; health care cost; health care personnel; health care quality; health care utilization; children with medical complexity; randomized controlled trial (topic); health care organization; hospital readmission; patient safety; human; child; health care delivery; perception; health care; survival rate; emergency ward; medical care; community care; adverse outcome; multidisciplinary team; therapy; health care need; health insurance; meta analysis; primary health care; life satisfaction; Bias; telemedicine; program evaluation; Review; multiple chronic conditions; functional status; transition to adult care; Controlled Before-After Studies; controlled clinical trial (topic); Interrupted Time Series Analysis; Non-Randomized Controlled Trials as Topic; pulmonary aspiration; remuneration; statistical bias Creator An entity primarily responsible for making the resource Harvey AR; Meehan E; Merrick N; D’Aprano AL; Cox GR; Williams K; Gibb SM; Mountford NJ; Connell TG; Cohen E Description An account of the resource Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been suggested that improving aspects of healthcare delivery for CMC improves health- and quality of life-related outcomes for children and their families and reduces healthcare-related expenditure. As a result, dedicated comprehensive care programmes have been established at many hospitals to meet the needs of CMC; however, it is unclear if such programmes are effective. Objectives: Our main objective was to assess the effectiveness of comprehensive care programmes that aim to improve care coordination and other aspects of health care for CMC and to assess whether the effectiveness of such programmes differs according to the programme setting and structure. We aimed to assess their effectiveness in relation to child and parent health, functioning, and quality of life, quality of care, number of healthcare encounters, unmet healthcare needs, and total healthcare-related costs. Search methods: We searched CENTRAL, MEDLINE, Embase, and CINAHL in May 2023. We also searched reference lists, trial registries, and the grey literature. Selection criteria: Randomised and non-randomised trials, controlled before-after studies, and interrupted time series studies were included. Studies that compared enrolment in a comprehensive care programme with non-enrolment in such a programme/treatment as usual were included. Participants were children that met the criteria for the definition of CMC, which is: having (i) a chronic condition, (ii) functional limitations, (iii) increased health and other service needs, and (iv) increased healthcare costs. Studies that included the following types of outcomes were included: health; quality of care; utilisation, coverage and access; resource use and costs; equity; and adverse outcomes. Data collection and analysis: Two review authors independently extracted data, assessed the risk of bias in each included study, and evaluated the certainty of evidence according to GRADE criteria. Where possible, data were represented in forest plots and pooled. We were unable to undertake a meta-analysis for comparisons and outcomes, so we used a structured synthesis approach. Main results: We included four studies with a total of 912 CMC as participants. All included studies were randomised controlled trials conducted in hospitals in the USA or Canada. Participants varied across the included studies; however, all four studies included children with complex and chronic illness and high healthcare needs. While the primary aim of the intervention was similar across all four studies, the components of the interventions differed: in the four studies, the intervention involved some element of care coordination; in two of the studies, it involved the child receiving care from a multidisciplinary team, while in one study, the intervention was primarily centred on access to an advanced practice nurse care coordinator and another study involved nurse a practitioner-paediatrician dyad partnering with families. The risk of bias in the four studies varied across domains, with issues primarily relating to the lack of blinding of participants, personnel, and outcome assessors, inadequate allocation concealment, and incomplete outcome data. Comprehensive care for CMC compared to usual care may make little to no difference to child health, functioning, and quality of life at 12 or 24 months (three studies with 404 participants) and we assessed the evidence for the outcomes in this category (child health-related quality of life and functional status) as being of low certainty. For CMC, comprehensive care probably makes little or no difference to parent health, functioning, and quality of life compared to usual care at 12 months (one study with 117 participants) and we assessed the evidence for this outcome as being of moderate certainty. Comprehensive care for CMC compared to usual are may slightly improve child and family satisfaction with, and perceptions of, care and service delivery at 12 months (three studies with 453 participants); however, we assessed the evidence for these outcomes as being of low certainty. For CMC, comprehensive care probably makes little or no difference to the number of healthcare encounters (emergency department visits) and the number of hospitalised days (hospital admissions) compared to usual care at 12 months (three studies with 668 participants), and we assessed the evidence for these outcomes as being of moderate certainty. Three of the included studies (668 participants) reported cost outcomes and had conflicting results, with one study reporting significantly lower healthcare costs at 12 months in the intervention group compared to the control group, one reporting no differences between groups, and the other study reporting a greater increase in total healthcare costs in the intervention group compared to the control group. Overall, comprehensive care may make little or no difference to overall healthcare costs in CMC; however, the methods used to measure total healthcare costs varied across studies and the certainty of the evidence relating to this outcome is low. No studies assessed the costs to the family. Authors' conclusions: The findings of this review should be treated with caution due to the limited amount and quality of the published research that was available to be included. Overall, the certainty of the evidence for the effectiveness of comprehensive care for CMC ranged from low to moderate across outcomes and there is currently insufficient evidence on which to draw strong conclusions. There is a need for more high-quality randomised trials with consistency of the target population and intervention components, methods of reporting outcomes, and follow-up periods, as well as full cost analyses, taking into account both costs to the family and costs to the healthcare system. Copyright © 2024 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/14651858.CD013329.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD013329.pub2</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 adverse outcome August List 2024 Bias Caregiver Child Child Health Care Child Preschool Children With Medical Complexity Chronic Disease Cochrane Database of Systematic Reviews Cohen E community care Comprehensive Health Care Connell TG Controlled Before-After Studies controlled clinical trial (topic) Cox GR D’Aprano AL Decision Making Emergency Health Service Emergency Ward Epidemiology Functional Status Gibb SM Harvey AR Health Care Health Care Cost Health Care Delivery health care need health care organization Health Care Personnel Health Care Quality Health Care Utilization health Insurance Hospital Admission hospital readmission Human Humans Infant Interrupted Time Series Analysis life satisfaction Medical Care Meehan E Merrick N meta analysis Mountford NJ Multidisciplinary team Multiple Chronic Conditions Non-Randomized Controlled Trials as Topic outcome assessment Patient Safety Perception Preschool Child Primary Health Care Program Evaluation pulmonary aspiration Quality Of Health Care Quality Of Life Randomized Controlled Trial (topic) Randomized Controlled Trials as Topic remuneration Review social determinants of health Social Worker statistical bias Survival Rate Telemedicine Therapy Transition To Adult Care Williams K 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/10.1136/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2023-075740</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 Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia Publisher An entity responsible for making the resource available BMJ 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 Australia; care behavior; decision making; interpersonal communication; parent; pediatrician; phenomenology; article; child; courage; human; interview; male; palliative therapy; shared decision making; signal transduction; simulation Creator An entity primarily responsible for making the resource Vemuri S; Hynson J; Williams K; O'Neill J; Gillam L Description An account of the resource Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. Design: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors. Setting: Acute intensive and long-term outpatient paediatric care in Victoria, Australia. Participants: 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period. Results: Three key themes in a preparatory process (termed 'shepherding') were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes. Conclusions: Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child's health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians' decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmjopen-2023-075740" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2023-075740</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 Australia Bmj Open care behavior Child courage Decision Making Gillam L Human Hynson J Interpersonal Communication Interview Male March List 2024 O'Neill J Palliative Therapy Parent Pediatrician Phenomenology shared decision making Signal Transduction Simulation Vemuri S Williams K 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/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cam4.5213</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 Regional adaptation of the education in palliative and end-of-life Care Pediatrics (EPEC-Pediatrics) curriculum in Eurasia Publisher An entity responsible for making the resource available Cancer 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 Humans; Child; pediatric palliative care; Terminal Care; education; Palliative Care/methods; Curriculum; Covid-19; Terminal Care; pediatric oncology; Eurasia; Enteropathogenic Escherichia coli Creator An entity primarily responsible for making the resource McNeil MJ; Ehrlich B; Yakimkova T; Wang H; Mishkova V; Bezler Z; Kumirova E; Madni A; Movsisyan N; Williams K; Baizakova B; Borisevich M; Chatman G; Erimbetova I; Quintero XG; Golban R; Kirby B; Nunez P; Ranadive R; Sakhar N; Sonnenfelt J; Volkova A; Moreira D; Friedrichsdorf SJ; Wolfe J; Remke S; Hauser J; Devidas M; Baker JN; Agulnik A Description An account of the resource BACKGROUND: Pediatric palliative care (PPC) is a priority to improve pediatric hematology oncology (PHO) care in Eurasia. However, there are limited regional opportunities for PPC education. We describe the adaptation and implementation of a bilingual end-user Education in Palliative and End-of-Life Care (EPEC)-Pediatrics course for PHO clinicians in Eurasia. METHODS: Due to COVID-19, this course was delivered virtually, consisting of prerecorded, asynchronous lectures, and a bilingual workshop with interactive lectures and small group sessions. A pre-postcourse design was used to evaluate the knowledge acquisition of the participants including their knowledge alignment with World Health Organization (WHO) guidance, ideal timing of palliative care, and comfort in providing palliative care to their patients. Questions were mostly quantitative with multiple choice or Likert scale options, supplemented by free-text responses. RESULTS: A total of 44 (76%) participants from 14 countries completed all components of the course including pre- and postcourse assessments. Participant alignment with WHO guidance improved from 75% in the pre- to 90% in the postcourse assessments (p < 0.001). After participation, 93% felt more confident controlling the suffering of children at the end of life, 91% felt more confident in prescribing opioids and managing pain, and 98% better understood how to hold difficult conversations with patients and families. Most participants (98%) stated that they will change their clinical practice based on the skills and knowledge gained in this course. CONCLUSIONS: We present a successful regional adaptation of the EPEC-Pediatrics curriculum, including novel delivery of course content via a virtual bilingual format. This course resulted in significant improvement in participant attitudes and knowledge of PPC along with an understanding of the ideal timing of palliative care consultation and comfort in providing PPC to children with cancer. We plan to incorporate participant feedback to improve the course and repeat it annually to improve access to high-quality palliative care education for PHO clinicians in Eurasia. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/cam4.5213" target="_blank" rel="noreferrer noopener">10.1002/cam4.5213</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 Agulnik A Baizakova B Baker JN Bezler Z Borisevich M Cancer Medicine Chatman G Child COVID-19 Curriculum Devidas M Education Ehrlich B Enteropathogenic Escherichia coli Erimbetova I Eurasia Friedrichsdorf SJ Golban R Hauser J Humans Kirby B Kumirova E Madni A McNeil MJ Mishkova V Moreira D Movsisyan N Nunez P Palliative Care/methods Pediatric Oncology Pediatric Palliative Care Quintero XG Ranadive R Remke S Sakhar N Sonnenfelt J Terminal Care Volkova A Wang H Williams K Wolfe J Yakimkova T 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 August 2023 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 August List 2023 URL Address <a href="http://doi.org/10.1542/peds.2022-059447" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1542/peds.2022-059447</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 Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children 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 2023 Subject The topic of the resource Humans; Child; Cohort Studies; Female; Male; Communication; Prospective Studies; Emotions; Empathy Creator An entity primarily responsible for making the resource Olszewski AE; Bogetz J; Mercer A; Bradford MC; Scott M; Fields B; Williams K; Rosenberg AR; Trowbridge A Description An account of the resource BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1542/peds.2022-059447" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059447</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 August List 2042 Bogetz J Bradford MC Child Cohort Studies Communication Emotions Empathy Female Fields B Humans Male Mercer A Olszewski AE Pediatrics Prospective Studies Rosenberg AR Scott M Trowbridge A Williams K 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 July 2023 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 July List 2023 URL Address <a href="http://doi.org/10.1136/archdischild-2022-324963" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2022-324963</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 two 'truths': a qualitative study of physician-led end-of-life decision-making for children with life-limiting conditions 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 2023 Subject The topic of the resource Child; Decision Making; ethics; intensive care units paediatric; Only Child; paediatrics; palliative care; qualitative research Creator An entity primarily responsible for making the resource Vemuri S; Hynson J; Williams K; Gillam L Description An account of the resource OBJECTIVE: To describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves. DESIGN: A qualitative phenomenological study using semistructured interviews based around a clinical vignette matched to the clinical practice of individual paediatricians. Verbatim transcripts underwent thematic analysis. SETTING: Paediatricians practising in Victoria (Australia) between mid-2019 and mid-2020. PARTICIPANTS: Twenty-five purposively sampled paediatricians caring for children with specific life-limiting conditions: children with severe neurodisability, oncological or haematological malignancies or complex cardiac disease in an inpatient intensive care or outpatient clinic setting. RESULTS: A process of physician-led end-of-life decision-making was described. Paediatricians first contemplate that the child's death is approaching, then prepare themselves by ensuring there are no reversible factors at play. They then inform parents of this view and, if needed, hold discordant views between parents and themselves about the child's death in a 'fruitful tension'. Ultimately, they seek to bring parents' views of their child in line with theirs to facilitate goal alignment. CONCLUSIONS: Paediatricians feel responsible for facilitating the alignment of parental understanding of the child's health status with their own. This is achieved either through direction or by holding differences between parental and medical truths about the child's health in tension to provide time, space, and clarity. This alignment was seen as key to enabling end-of-life treatment decisions, without which conflict in end-of-life decision-making can arise or persist. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2022-324963" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2022-324963</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 Archives of Disease in Childhood Child Decision Making Ethics Gillam L Hynson J intensive care units paediatric July List 2023 Only Child Paediatrics Palliative Care Qualitative Research Vemuri S Williams K 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 2022 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 2022 List URL Address <a href="http://doi.org/10.1016/j.jpainsymman.2022.02.249" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.jpainsymman.2022.02.249</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 Child's Death Is Different”: Responding to the Needs, Preferences, and Challenges Shared by Hospice Nurses Caring for Dying Children in the Community (FR214) 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 2022 Subject The topic of the resource Arkansas; Child; Community Health Services; Death; Hospices; Mississippi; Nurses; Palliative Care; Quality of Life; Self Report; Tennessee Creator An entity primarily responsible for making the resource Porter A; Aglio T; Williams K; Baker JN; Kaye EC Description An account of the resource Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes of mixed-methods survey- and interview-based exploration of perspectives and needs of community-based hospice nurses who provide care to children with serious illness and their families at the end of the life 3. Characterize and explain how to implement a spoke-and-hub model for providing hospice nurses with pediatric-specific training, support, and solidarity Approximately 500,000 children in the United States suffer from serious illness, of whom 10% die annually. Optimal provision of hospice services can lessen symptom burden and improve quality of life, reduce parental psychosocial stress, decrease costs, and limit clinician distress. Nonetheless, only 1 in 10 dying children receive hospice care, usually through adult organizations, and few community hospice nurses receive pediatric-specific training, resources, and support. In this concurrent session, interdisciplinary pediatric palliative care physicians and advance practice providers will partner with community-based hospice nurses to propose a resource-efficient, comprehensive intervention to address this challenge. First, they will review existing research findings, including a mixed-methods survey study of >550 hospice nurses across 71 hospice agencies that offer care to children in the tristate region of Tennessee, Arkansas, and Mississippi, and an interview-based, qualitative study of 41 of hospice nurses representing various levels of self-reported comfort with caring for children at the end of life (eg, very comfortable, somewhat comfortable, somewhat uncomfortable, very uncomfortable). The survey study found that nearly 90% of nurses had no pediatric palliative care training, 50% had no pediatric hospice experience, those with exposure described limited training (eg, online module, 2-day course), and few had opportunities to build skills. Both the survey and interviews revealed that nurses reported overwhelming discomfort with pediatric-specific care, clearly articulated gaps in training and support, and expressed a strong desire for further pediatric-specific education, resources, and support. Next, presenters will propose a spoke-and-hub model driven by community hospice nurses’ insights and recommendations, in which pediatric academic centers partner with community hospices to bring clinicians together regularly to carry out didactic learning, foster a sense of community and solidarity, help nurses network with colleagues, and reinforce access to colleagues and experts who can offer guidance in real time. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.jpainsymman.2022.02.249" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.249</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). 2022 Aglio T April 2022 List Arkansas Baker JN Child Community Health Services Death Hospices Journal of Pain and Symptom Management Kaye EC Mississippi Nurses Palliative Care Porter A Quality Of Life Self Report Tennessee Williams K 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 December 2021 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 December 2021 List URL Address <a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1001/jamanetworkopen.2021.27457</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 Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness Publisher An entity responsible for making the resource available JAMA network open Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource challenges; children; hospice; nurse perspectives; serious illness Creator An entity primarily responsible for making the resource Porter AS; Zalud K; Applegarth J; Woods C; Gattas M; Rutt E; Williams K; Baker JN; Kaye EC Description An account of the resource Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1001/jamanetworkopen.2021.27457" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2021.27457</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). 2021 Applegarth J Baker JN challenges Children December 2021 List Gattas M Hospice JAMA Network Open Kaye EC nurse perspectives Porter AS Rutt E Serious Illness Williams K Woods C Zalud K 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 August 2018 List 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). 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 August 2018 List URL Address <a href="http://doi.org/10.1111/jpc.14092" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jpc.14092</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 last 2 years of life for children with severe physical disability: Observations from a tertiary paediatric centre Publisher An entity responsible for making the resource available Journal of Paediatrics and Child Health Date A point or period of time associated with an event in the lifecycle of the resource 2018 Creator An entity primarily responsible for making the resource Vemuri S; Baker L; Williams K; Hynson J Description An account of the resource AIM: To describe the clinical course for children with severe physical disability (SPD) in the 2 years prior to their death and to identify whether these children had palliative care involvement and advance care planning prior to death. To investigate whether there is a difference between children with progressive (PSPD) and non-progressive (NPSPD) aetiologies of SPD. METHODS: A retrospective cohort analysis of 48 children with SPD who died between 1 January 2013 and 1 January 2015 at The Royal Children's Hospital, Melbourne. Clinical charts were reviewed to collect data about the type of SPD, frequency and duration of hospital admissions, duration of palliative care involvement (if any) and presence of an advance care plan. RESULTS: The majority of children were admitted in the 6 months before their death, and over a third were admitted to the intensive care unit. There was a significant increase in the frequency of hospital admissions as the study cohort approached death (P = 0.003). The majority of children with SPD were offered a referral to a palliative care service, with referrals more likely in children with PSPD (90%) compared to children with NPSPD (57%). While approximately 60% of children in each cohort had an advance care plan, there was a trend towards this being formalised earlier in children with PSPD (P = 0.09). CONCLUSION: The increase in hospital admissions prior to death in children with SPD suggests an opportunity for greater consistency in offering advanced care planning and palliative care, especially to those with NPSPD. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/jpc.14092" target="_blank" rel="noreferrer noopener">10.1111/jpc.14092</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). 2018 August 2018 List Baker L Hynson J Journal of Paediatrics and Child Health Vemuri S Williams K 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 Backlog URL Address <a href="http://doi.org/10.1186/1471-2431-5-38" target="_blank" rel="noreferrer">http://doi.org/10.1186/1471-2431-5-38</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 in reviews: methodological issues in child-relevant evidence syntheses Publisher An entity responsible for making the resource available Bmc Pediatrics Date A point or period of time associated with an event in the lifecycle of the resource 2005 Subject The topic of the resource PedPal Lit; Clodronate Creator An entity primarily responsible for making the resource Cramer K; Wiebe N; Moyer V; Hartling L; Williams K; Swingler G; Klassen TP Description An account of the resource BACKGROUND: The delivery of optimal medical care to children is dependent on the availability of child relevant research. Our objectives were to: i) systematically review and describe how children are handled in reviews of drug interventions published in the Cochrane Database of Systematic Reviews (CDSR); and ii) determine when effect sizes for the same drug interventions differ between children and adults. METHODS: We systematically identified all of the reviews relevant to child health in the CDSR 2002, Issue 4. Reviews were included if they investigated the efficacy or effectiveness of a drug intervention for a condition that occurs in both children and adults. Information was extracted on review characteristics including study methods, results, and conclusions. RESULTS: From 1496 systematic reviews, 408 (27%) were identified as relevant to both adult and child health; 52% (213) of these included data from children. No significant differences were found in effect sizes between adults and children for a ny of the drug interventions or conditions investigated. However, all of the comparisons lacked the power to detect a clinically significant difference and wide confidence intervals suggest important differences cannot be excluded. A large amount of data was unavailable due to inadequate reporting at the trial and systematic review level. CONCLUSION: Overall, the findings of this study indicate there is a paucity of child-relevant and specific evidence generated from evidence syntheses of drug interventions. The results indicate a need for a higher standard of reporting for participant populations in studies of drug interventions.; 2005 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/1471-2431-5-38" target="_blank" rel="noreferrer">10.1186/1471-2431-5-38</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). Type The nature or genre of the resource Journal Article 2005 Backlog Bmc Pediatrics Clodronate Cramer K Hartling L Journal Article Klassen TP Moyer V PedPal Lit Swingler G Wiebe N Williams K