1
40
29
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Title
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April 2024 List
Text
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April List 2024
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2024.02.006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2024.02.006</a>
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Psychologists as Pivotal Members of the Pediatric Palliative Care Team
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Journal of Pain and Symptom Management
Date
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2024
Subject
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child; Palliative Care; diagnosis; article; human; quality of life; palliative therapy; Psychology; adolescent; therapy; evidence based practice; drug therapy; consensus; interdisciplinary research; psychologist
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Thompson AL; Kentor RA; Schaefer MR; McCarthy SR
Description
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Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. Objectives: This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues. Methods: Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC. Results: As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being. Conclusions: With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families.
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<a href="http://doi.org/10.1016/j.jpainsymman.2024.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2024.02.006</a>
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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
Child
Consensus
Diagnosis
Drug Therapy
evidence based practice
Human
interdisciplinary research
Journal of Pain and Symptom Management
Kentor RA
McCarthy SR
Palliative Care
Palliative Therapy
Psychologist
Psychology
Quality Of Life
Schaefer MR
Therapy
Thompson AL
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Title
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April 2024 List
Text
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April List 2024
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<a href="http://doi.org/10.1097/NJH.0000000000001018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NJH.0000000000001018</a>
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Title
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Changing the Landscape of the Neighborhood: The Expanding Role of the Pediatric Palliative Advanced Practice Registered Nurse
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Journal of Hospice and Palliative Nursing
Date
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2024
Subject
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child; article; human; palliative therapy; pharmacology; adolescent; evidence based practice; emergency care; medical society; consensus; special situation for pharmacovigilance; neighborhood; registered nurse
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Sartor N; Bass AK; Overstreet K
Description
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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
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<a href="http://doi.org/10.1097/NJH.0000000000001018" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000001018</a>
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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
-
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2023 Special Edition 5 - Low Resource Setting List
Text
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2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/10499091231180819" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/10499091231180819</a>
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"It Seems Like a Bad Thing": US South Asian Youths' Perspectives About the Use of Hospice Care
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American Journal of Hospice and Palliative Care
Date
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2023
Subject
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Adolescent; Hospice Care; article; controlled study; female; human; quality of life; palliative therapy; Hospices; education; clinical article; adolescent; thematic analysis; qualitative research; hospice care; consensus; place of death; juvenile; inheritance; Indian; South Asian; vulnerable population; university student
Creator
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Khosla N
Description
An account of the resource
BACKGROUND: South Asians are one of the fastest growing populations in the US. Family based decision making is common among this population. Little is known about their knowledge and attitudes towards hospice use. <br/>OBJECTIVE(S): This study explored US South Asian youths' knowledge of, and attitudes towards hospice care. DESIGN: Qualitative study, using focus group discussions. <br/>METHOD(S): Thirty-six university students of South Asian heritage participated in ten focus group discussions. Data were coded inductively and deductively. Thematic analysis was performed. Disagreements were resolved through discussion. <br/>RESULT(S): Participants were in consensus that if patients had an incurable, fatal condition, keeping them comfortable was important. Several participants were unaware of the terms 'hospice' and 'palliative care'. After these terms were explained, most opposed hospice care for reasons of 'desire for a normal life', 'cultural incompatibility', 'concerns about the hospice environment' and 'preference for home as the place of death'. Some were opposed to even home hospice fearing that it would continuously remind the family and patient about impending death. Concerns were also expressed about having a 'stranger' in the home to provide hospice care. One participant said she would support hospice use if it aligned with the patient's values. Others cited financial reasons and quality of life as considerations in choosing hospice care. <br/>CONCLUSION(S): Research is needed on culturally-appropriate modes of palliative care education and advocacy for South Asian populations in the US, especially youth, that are often the decision makers for the care of older family members.
Identifier
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<a href="http://doi.org/10.1177/10499091231180819" target="_blank" rel="noreferrer noopener">10.1177/10499091231180819</a>
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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
Adolescent
American Journal Of Hospice And Palliative Care
Article
Clinical Article
Consensus
Controlled Study
Education
Female
Hospice Care
Hospices
Human
Indian
inheritance
juvenile
Khosla N
Palliative Therapy
Place Of Death
Qualitative Research
Quality Of Life
South Asian
Thematic Analysis
university student
vulnerable population
-
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Title
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September 2023 List
Text
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Citation List Month
September List 2023
URL Address
<a href="http://doi.org/10.1136/jme-2022-108448" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/jme-2022-108448</a>
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The age limit for euthanasia requests in the Netherlands: a Delphi study among paediatric experts
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Journal of Medical Ethics
Date
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2023
Subject
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Humans; Child; Consensus; Netherlands; Delphi Technique; Minors; Euthanasia
Creator
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de Keijzer SC; Widdershoven G; Verhagen AAE; Pasman HR
Description
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Background The Dutch Euthanasia Act applies to patients 12 years and older, which makes euthanasia for minors younger than 12 legally impossible. The issue under discussion specifically regards the capacity of minors to request euthanasia. Objective Gain insight in paediatric experts’ views about which criteria are important to assess capacity, from what age minors can meet those criteria, what an assessment procedure should look like and what role parents should have. Methods A Delphi study with 16 experts (paediatricians, paediatric nurses and paediatric psychologists) who work in Children Comfort Teams in Dutch academic hospitals. The questionnaire contained statements concerning criteria for capacity and procedural criteria. Consensus was defined as ≥80% agreement. Results The experts agreed that five criteria for capacity, found in a previous literature study, are all important. They agreed that some children between ages 9 and 11 could meet all the criteria. Consensus was reached for the statements that the entire medical team should be involved in the decision making and that a second independent expert must assess the case. Experts agreed that the parents’ opinion is relevant and should always be taken into account, but it need not be decisive. Conclusion This study shows that the age limit of 12 years in the Dutch Euthanasia Act is too strong according to paediatric experts. Letting go of the age limit or lowering the age limit combined with adequate capacity assessment for minors younger than 12 are options that should be discussed further.
Identifier
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<a href="http://doi.org/10.1136/jme-2022-108448" target="_blank" rel="noreferrer noopener">10.1136/jme-2022-108448</a>
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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
Child
Consensus
de Keijzer SC
Delphi Technique
Euthanasia
Humans
Journal of Medical Ethics
Minors
Netherlands
Pasman HR
September List 2032
Verhagen AAE
Widdershoven G
-
Dublin Core
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Title
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2022 Special Edition 3 - Oncology List
Text
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Citation List Month
2022 Special Edition 3 - Oncology List
URL Address
<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0270797</a>
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Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
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PLOS ONE
Date
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2022
Creator
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Sansom-Daly UM; Wiener L; Darlington AS; Poort H; Rosenberg AR; Weaver MS; Schulte F; Anazodo A; Phillips C; Sue L; Herbert AR; Mack JW; Lindsay T; Evans H; Wakefield CE; Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Description
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For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.
Identifier
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<a href="http://doi.org/10.1371/journal.pone.0270797" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0270797</a>
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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
2022 Special Edition 3 - Oncology List
Adolescent
Anazodo A
Communication
Consensus
Darlington AS
Death
Delphi Technique
Evans H
Global Adolescent and Young Adult Cancer Accord End-of-Life Study Group
Herbert AR
Humans
Lindsay T
Mack JW
Neoplasms
Neoplasms/th [therapy]
Phillips C
PLoS One
Poort H
Rosenberg AR
Sansom-Daly UM
Schulte F
Sue L
Wakefield CE
Weaver MS
Wiener L
Young Adult
-
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Title
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September 2022 List
Text
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Citation List Month
September 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221093145</a>
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Title
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Quality of End-of-Life Care in Children With Neurological Conditions in Belgium: A Population-Level Evaluation Using Face-Validated Quality Indicators
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; human; female; male; consultation; surgery; palliative; therapy; imaging; study; clinical; abstract; care; conference; intensive; major; unit; retrospective; system; follow; up; Belgium; nervous; terminal; general; magnetic; nuclear; observational; overtreatment; practitioner; ray; resonance; X
Creator
An entity primarily responsible for making the resource
Piette V; Smets T; Deliens L; Van Berlaer G; Beernaert K; Cohen J
Description
An account of the resource
Background/aims: Neurological conditions, such as cerebral palsy and muscular dystrophy, are the main diagnoses of referral for many pediatric palliative care teams. Nevertheless, parents of children with such conditions globally report insufficient end-of-life care. Population-level measurement of end-of-life care appropriateness provides a quality-ofcare overview that is currently lacking, and offers options for care improvement. Therefore, the aim of this study was to evaluate the quality of end-of-life care in children who died with neurological conditions using face-validated quality indicators.
Identifier
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<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
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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
Beernaert K
Cohen J
Consensus
Deliens L
Palliative Medicine
Piette V
Quality Assurance
Reproducibility of Results
September 2022 List
Smets T
Terminal Care
Van Berlaer G
-
Dublin Core
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Title
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2020 Oncology List
Text
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Citation List Month
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1002/pbc.28409" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28409</a>
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The COVID-19 pandemic: A rapid global response for children with cancer from SIOP, COG, SIOP-E, SIOP-PODC, IPSO, PROS, CCI, and St Jude Global
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Humans; Child; pediatrics; childhood cancer; Pediatrics; Disease Management; Medical Oncology; Consensus; Societies; Medical; retinoblastoma; acute lymphoblastic leukemia; COVID-19; SARS-CoV-2; Betacoronavirus; Pandemics; Pneumonia; Burkitt lymphoma; Coronavirus Infections/*epidemiology; Neoplasms/complications/diagnosis/*therapy; Viral/*epidemiology; Hodgkin lymphoma; low-grade glioma; nephroblastoma; WHO Global Initiative on Childhood Cancer; Wilms tumor
Creator
An entity primarily responsible for making the resource
Sullivan M; Bouffet E; Rodriguez-Galindo C; Luna-Fineman S; Khan M S; Kearns P; Hawkins D S; Challinor J; Morrissey L; Fuchs J; Marcus K; Balduzzi A; Basset-Salom L; Caniza M; Baker J N; Kebudi R; Hessissen L; Sullivan R; Pritchard-Jones K
Description
An account of the resource
The COVID-19 pandemic is one of the most serious global challenges to delivering affordable and equitable treatment to children with cancer we have witnessed in the last few decades. This Special Report aims to summarize general principles for continuing multidisciplinary care during the SARS-CoV-2 (COVID-19) pandemic. With contributions from the leadership of the International Society for Pediatric Oncology (SIOP), Children's Oncology Group (COG), St Jude Global program, and Childhood Cancer International, we have sought to provide a framework for healthcare teams caring for children with cancer during the pandemic. We anticipate the burden will fall particularly heavily on children, their families, and cancer services in low- and middle-income countries. Therefore, we have brought together the relevant clinical leads from SIOP Europe, COG, and SIOP-PODC (Pediatric Oncology in Developing Countries) to focus on the six most curable cancers that are part of the WHO Global Initiative in Childhood Cancer. We provide some practical advice for adapting diagnostic and treatment protocols for children with cancer during the pandemic, the measures taken to contain it (e.g., extreme social distancing), and how to prepare for the anticipated recovery period.
Identifier
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<a href="http://doi.org/10.1002/pbc.28409" target="_blank" rel="noreferrer noopener">10.1002/pbc.28409</a>
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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).
2020
Acute Lymphoblastic Leukemia
Baker J N
Balduzzi A
Basset-Salom L
Betacoronavirus
Bouffet E
Burkitt lymphoma
Caniza M
Challinor J
Child
Childhood Cancer
Consensus
Coronavirus Infections/*epidemiology
COVID-19
Disease Management
Fuchs J
Hawkins D S
Hessissen L
Hodgkin lymphoma
Humans
Kearns P
Kebudi R
Khan M S
low-grade glioma
Luna-Fineman S
Marcus K
Medical
Medical Oncology
Morrissey L
Neoplasms/complications/diagnosis/*therapy
nephroblastoma
Oncology 2020 List
Pandemics
Pediatric Blood and Cancer
Pediatrics
Pneumonia
Pritchard-Jones K
retinoblastoma
Rodriguez-Galindo C
SARS-CoV-2
Societies
Sullivan M
Sullivan R
Viral/*epidemiology
WHO Global Initiative on Childhood Cancer
Wilms tumor
-
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
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October 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1002/jpen.1498" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/jpen.1498</a>
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Priorities for Nutrition Research in Pediatric Critical Care
Publisher
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Journal of Parenteral and Enteral Nutrition
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; Child; Child Nutrition Disorders/prevention & control/*therapy; Child Nutritional Physiological Phenomena; Children; Consensus; Critical Care/*methods; Critical Illness; Delphi Technique; enteral nutrition; Humans; Intensive Care; Intensive care units (paediatric); Internationality; Nutritional Support/*methods; parenteral nutrition; Pediatric; research
Creator
An entity primarily responsible for making the resource
Tume L N; Valla F V; Floh A A; Goday P; Jotterand Chaparro C; Larsen B; Lee J H; Moreno Y M F; Pathan N; Verbruggen S; Mehta N M
Description
An account of the resource
BACKGROUND: Widespread variation exists in pediatric critical care nutrition practices, largely because of the scarcity of evidence to guide best practice recommendations. OBJECTIVE: The objective of this paper was to develop a list of topics to be prioritized for nutrition research in pediatric critical care in the next 10 years. METHODS: A modified 3-round Delphi process was undertaken by a newly established multidisciplinary group comprising 11 international researchers in the field of pediatric critical care nutrition. Items were ranked on a 5-point Likert scale. RESULTS: Forty-five research topics (with a mean priority score >3(0-5) were identified within the following 10 domains: the pathophysiology and impact of malnutrition in critical illness; nutrition assessment: nutrition risk assessment and biomarkers; accurate assessment of energy requirements in all phases of critical illness; the role of protein intake; the role of pharmaco-nutrition; effective and safe delivery of enteral nutrition; enteral feeding intolerance: assessment and management; the role of parenteral nutrition; the impact of nutrition status and nutrition therapies on long-term patient outcomes; and nutrition therapies for specific populations. Ten top research topics (that received a mean score >4(0-5) were identified as the highest priority for research. CONCLUSIONS: This paper has identified important consensus-derived priorities for clinical research in pediatric critical care nutrition. Future studies should determine topics that are a priority for patients and parents. Research funding should target these priority areas and promote an international collaborative approach to research in this field, with a focus on improving relevant patient outcomes.
Identifier
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<a href="http://doi.org/10.1002/jpen.1498" target="_blank" rel="noreferrer noopener">10.1002/jpen.1498</a>
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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).
2019
Child
Child Nutrition Disorders/prevention & control/*therapy
Child Nutritional Physiological Phenomena
Children
Consensus
Critical Care/*methods
Critical Illness
Delphi Technique
Enteral Nutrition
Floh A A
Goday P
Humans
Intensive Care
Intensive care units (paediatric)
Internationality
Jotterand Chaparro C
Journal Of Parenteral And Enteral Nutrition
Larsen B
Lee J H
Mehta N M
Moreno Y M F
Nutritional Support/*methods
October 2020 List
Parenteral Nutrition
Pathan N
Pediatric
Research
Tume L N
Valla F V
Verbruggen S
-
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
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March 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.262" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.262</a>
Dublin Core
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Title
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Pediatric Palliative Telehealth Care from Hospital to Hospital: A Pilot Project (QI653)
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
child; clinical article; comfort; community hospital; conference abstract; consensus; education; feasibility study; female; follow up; human; human experiment; Likert scale; male; palliative therapy; primary health care; program feasibility; questionnaire; satisfaction; telehealth; tertiary care center; total quality management
Creator
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Evan E; Sandesara A; Mock K O
Description
An account of the resource
Objectives: * Explain a novel method for creating pediatric palliative care resources using telehealth technology. * Describe preliminary data demonstrating project feasibility and satisfaction.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.262" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.262</a>
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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).
2020
Child
Clinical Article
Comfort
community hospital
conference abstract
Consensus
Education
Evan E
Feasibility Study
Female
Follow Up
Human
Human Experiment
Journal of Pain and Symptom Management
Likert scale
Male
March 2020 List
Mock K O
Palliative Therapy
Primary Health Care
program feasibility
Questionnaire
Sandesara A
Satisfaction
Telehealth
tertiary care center
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
December 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/01.ccm.0000551170.37983.db</a>
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Title
A name given to the resource
Palliative care integration in pediatric cardiac intensive care units: A novel champion-based model
Publisher
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Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
child; comorbidity; conceptual framework; conceptual model; conference abstract; consensus; coronary care unit; feasibility study; heart development; heart disease; hospitalization; human; morbidity; outcome assessment; palliative therapy; prognosis; rotation; simulation; total quality management
Creator
An entity primarily responsible for making the resource
Moynihan K; Kaye E; Bailey V; Wolfe J; Thiagarajan R; Snaman J
Description
An account of the resource
Learning Objectives: Integration of pediatric palliative care (PPC) into the management of children with serious illness and their families is widely endorsed by international organizations and experts in the field as standard of care. However, timely referral to, and integration of PPC into the traditionally cure-orientated Cardiac Intensive Care Unit (CICU) remains variable. Despite significant declines in mortality for children with cardiac disease, key challenges confront the pediatric CICU community with regards to prognostication and discussion of goals of care. In the context of significant comorbidities and technological dependence, lengthy hospitalizations and recurrent admissions as well as interventions risking significant morbidity, these patients and families would benefit from PPC involvement across the illness trajectory. Methods: We propose a novel, conceptual framework for palliative care integration into the CICU using expert consensus and literature review. Results: The model utilizes CICU-based, interdisciplinary "champions". Pediatric Palliative Care Champions (PPCCs) would be identified from within the CICU team and receive additional training through PPC courses and rotations with sub-specialty PPC services. PPCCs would perform 3 primary roles. First, their clinical role as a liaison aims to strengthen provision of primary palliative care in daily CICU practice and improve utilization of sub-specialty PPC by encouraging earlier involvement in more complex patients' management. Second, PPCCs will lead educational and communication training of CICU staff including simulation sessions, focused on eliciting preferences, discussing prognosis, providing difficult news, assessing hopes and worries, and making goal-based recommendations. Third, PPCCs will be integral in CICU operational aspects and quality improvement initiatives including the development of CICU protocols and standard operating procedures to enhance the provision of high quality care at the end of life. Conclusions: This novel conceptual model for integration of PPC into CICUs is designed for adaptability in the context of cultural, financial, personnel, and logistic needs and constraints unique to each institution. While the PPCC framework offers several unique advantages over other care models, barriers to implementation are anticipated. Further research is needed to investigate the feasibility, acceptability, and potential efficacy of this model on standard outcome measures as well as patient- and parent-reported metrics.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000551170.37983.db" target="_blank" rel="noreferrer noopener">10.1097/01.ccm.0000551170.37983.db</a>
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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).
2019
Bailey V
Child
Comorbidity
Conceptual Framework
conceptual model
conference abstract
Consensus
coronary care unit
Critical Care Medicine
December 2019 List
Feasibility Study
heart development
heart disease
Hospitalization
Human
Kaye E
Morbidity
Moynihan K
outcome assessment
Palliative Therapy
Prognosis
Rotation
Simulation
Snaman J
Thiagarajan R
Total Quality Management
Wolfe J
-
Dublin Core
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Title
A name given to the resource
November 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001881</a>
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Title
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Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care
Publisher
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BMJ supportive & palliative care.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
decision making; hypothermia; hypoxic ischemic encephalopathy; palliative therapy; article; consensus; controlled study; gestational age; grief; human; interview; nervous system; newborn; nurse; prognosis
Creator
An entity primarily responsible for making the resource
Arnaez J; Herranz-Rubia N; Garcia-Alix A
Description
An account of the resource
Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide. Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered. Results The main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents. Conclusions There are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjspcare-2019-001881" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001881</a>
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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).
2019
Arnaez J
Article
BMJ supportive & palliative care.
Consensus
Controlled Study
Decision Making
Garcia-Alix A
Gestational Age
Grief
Herranz-Rubia N
Human
hypothermia
hypoxic ischemic encephalopathy
Interview
Nervous System
Newborn
November 2019 List
Nurse
Palliative Therapy
Prognosis
-
Dublin Core
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Title
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October 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1542/peds.2019-0160" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2019-0160</a>
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Title
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Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; child; human; palliative therapy; skill; coronary care unit; multicenter study; staff; patient referral; clinician; hospitalization; total quality management; mortality; comorbidity; conceptual framework; consensus; feasibility study; heart disease; morbidity; rotation
Creator
An entity primarily responsible for making the resource
Moynihan K M; Snaman J M; Kaye E C; Morrison W E; DeWitt A G; Sacks L D; Thompson J L; Hwang J M; Bailey V; Lafond D A; Wolfe J; Blume E D
Description
An account of the resource
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy. Copyright © 2019 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.2019-0160" target="_blank" rel="noreferrer noopener">10.1542/peds.2019-0160</a>
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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).
2019
Article
Bailey V
Blume E D
Child
Clinician
Comorbidity
Conceptual Framework
Consensus
coronary care unit
DeWitt A G
Feasibility Study
heart disease
Hospitalization
Human
Hwang J M
Kaye E C
Lafond D A
Morbidity
Morrison W E
Mortality
Moynihan K M
Multicenter Study
October 2019 List
Palliative Therapy
Patient Referral
Pediatrics
Rotation
Sacks L D
Skill
Snaman J M
Staff
Thompson J L
Total Quality Management
Wolfe J
-
Dublin Core
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Title
A name given to the resource
October 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.005</a>
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Title
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Impact of Specialized Pediatric Palliative Care: A Systematic Review
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
2019
Subject
The topic of the resource
Medline; child; cohort analysis; female; human; male; palliative therapy; controlled study; pediatrics; outcome assessment; quality of life; systematic review; Palliative care; data extraction; Embase; review; synthesis; Web of Science; PsycINFO; risk assessment; consensus; clinical assessment; Cochrane Library; end of life; global health; patient reported outcome; patient-reported outcomes; randomized controlled trial (topic); selection bias
Creator
An entity primarily responsible for making the resource
Marcus K L; Santos G; Ciapponi A; Comande D; Bilodeau M; Wolfe J; Dussel V
Description
An account of the resource
CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes. METHOD(S): We performed a Systematic Review following Cochrane methods. DATA SOURCES: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018. STUDY SELECTION/DATA EXTRACTION: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria. RESULT(S): Twenty-four studies were included in qualitative synthesis: one non-randomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had >=1 area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life (QOL) scores in all four studies that assessed this outcome. No other outcome showed this consistency. CONCLUSION(S): Receiving SPPC was associated with better child QOL. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed. Copyright © 2019. Published by Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.005</a>
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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).
2019
Bilodeau M
Child
Ciapponi A
clinical assessment
Cochrane Library
Cohort Analysis
Comandé D
Consensus
Controlled Study
data extraction
Dussel V
Embase
End Of Life
Female
Global Health
Human
Journal of Pain and Symptom Management
Male
Marcus K L
Medline
October 2019 List
outcome assessment
Palliative Care
Palliative Therapy
patient reported outcome
Patient-reported Outcomes
Pediatrics
Psycinfo
Quality Of Life
Randomized Controlled Trial (topic)
Review
Risk Assessment
Santos G
Selection Bias
synthesis
Systematic Review
Web of Science
Wolfe 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 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1186/s12904-015-0054-7" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1186/s12904-015-0054-7</a>
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Title
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Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Netherlands; Palliative Care/st [Standards]; Humans; Palliative Care/mt [Methods]; Pediatrics/st [Standards]; Pediatrics/mt [Methods]; Health Planning Guidelines; Consensus; Caregivers
Creator
An entity primarily responsible for making the resource
Knops RR; Kremer L C; Verhagen AA; Dutch Paediatric Palliative Care Guideline Group for Symptoms
Description
An account of the resource
BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life-threatening condition receives high quality palliative care, clinical practice guidelines are needed. The aim of this study is to improve palliative care for children by making high quality care recommendations to recognize and relieve symptoms in paediatric palliative care. METHODS: An extensive search was performed for guidelines and systematic reviews on paediatric palliative care up to year 2011. An expert panel combined the evidence with consensus to form recommendations on the treatment of symptoms in paediatric palliative care. RESULTS: We appraised 21 guidelines and identified 693 potentially eligible articles of which four met our inclusion criteria. None gave recommendations on the treatment of symptoms in paediatric palliative care. Two textbooks and an adult palliative care website were eventually our main sources of evidence. CONCLUSION: Hardly any evidence is available for the treatment of symptoms in paediatric palliative care. By combining evidence for adult palliative care and the sparse evidence for paediatric palliative care with expert opinion we defined a unique set of high quality care recommendations to relieve symptoms and lessen the suffering of children in palliative care. These results are an important tool to educate caregivers on how to relieve symptoms in children in paediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-015-0054-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-015-0054-7</a>
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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).
2015
April 2019 List
BMC Palliative Care
Caregivers
Consensus
Dutch Paediatric Palliative Care Guideline Group for Symptoms
Health Planning Guidelines
Humans
Knops RR
Kremer L C
Netherlands
Palliative Care/mt [methods]
Palliative Care/st [standards]
Pediatrics/mt [methods]
Pediatrics/st [standards]
Verhagen AA
-
Dublin Core
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Title
A name given to the resource
February 2019 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 2019 List
URL Address
<a href="http://doi.org/10.1111/jspn.12226" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1111/jspn.12226</a>
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Title
A name given to the resource
Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study
Publisher
An entity responsible for making the resource available
Journal for specialists in pediatric nursing : JSPN
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
feasibility study; major clinical study; nurse; social worker; basic needs; caregiver; human experiment; physician; pediatrics; human; article; child; female; male; diagnosis; self care; consensus; theoretical study; Delphi study; family nursing
Creator
An entity primarily responsible for making the resource
Smith NR; Bally JMG; Holtslander L; Peacock S; Spurr S; Hodgson-Viden H; Mpofu C; Zimmer M
Description
An account of the resource
BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking. PURPOSE: The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three-phase study, the findings provided direction in the development of a theory-based hope intervention. DESIGN AND METHODS: A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jspn.12226" target="_blank" rel="noreferrer noopener">10.1111/jspn.12226</a>
2018
Article
Bally JMG
Basic Needs
Caregiver
Child
Consensus
Delphi Study
Diagnosis
Family Nursing
Feasibility Study
February 2019 List
Female
Hodgson-Viden H
Holtslander L
Human
Human Experiment
Journal for specialists in pediatric nursing : JSPN
Major Clinical Study
Male
Mpofu C
Nurse
Peacock S
Pediatrics
Physician
Self Care
Smith NR
Social Worker
Spurr S
theoretical study
Zimmer M
-
Dublin Core
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Title
A name given to the resource
2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/https://www.indianpediatrics.net/oct2017/851.pdf" target="_blank" rel="noreferrer noopener">http://doi.o
rg/https://www.indianpediatrics.net/oct2017/851.pdf</a>
Dublin Core
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Title
A name given to the resource
End-of-Life Care: Consensus Statement by Indian Academy of Pediatrics
Publisher
An entity responsible for making the resource available
Indian Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Family; Infant Newborn; Resuscitation Orders; Child; Humans; Child Preschool; Infant; Terminal Care; India; Academies and Institutes; Consensus; Pediatrics/methods/organization & administration/standards
Creator
An entity primarily responsible for making the resource
Mishra S; Mukhopadhyay K; Tiwari S; Bangal R; Yadav BS; Sachdeva A; Kumar V
2017
Academies and Institutes
Bangal R
Child
Child Preschool
Consensus
Developing World 2018 List
Family
Humans
India
Indian Pediatrics
Infant
Infant Newborn
Kumar V
Mishra S
Mukhopadhyay K
Pediatrics/methods/organization & administration/standards
Resuscitation Orders
Sachdeva A
Terminal Care
Tiwari S
Yadav BS
-
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 2019 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
January 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216318800172" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1177/0269216318800172</a>
Dublin Core
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Title
A name given to the resource
Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review
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
2018
Subject
The topic of the resource
infant; palliative care; adolescent; newborn; Delphi technique; child; humans; consensus
Creator
An entity primarily responsible for making the resource
Booth A; Maddison J; Wright K; Fraser L; Beresford B
Description
An account of the resource
BACKGROUND:: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas. AIM:: To map research priorities identified from existing research prioritisation exercises relevant to infants, children and young people with life-limiting conditions, in order to inform future research. DESIGN:: We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website. DATA SOURCES:: The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, life-threatening or life-shortening conditions; their family, parents, carers; and/or the professional staff caring for them. RESULTS:: A total of 24 research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by World Health Organization classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics. CONCLUSION:: There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families' perspectives.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318800172" target="_blank" rel="noreferrer noopener">10.1177/0269216318800172</a>
2018
Adolescent
Beresford B
Booth A
Child
Consensus
Delphi Technique
Fraser L
Humans
Infant
January 2019 List
Maddison J
Newborn
Palliative Care
Palliative Medicine
Wright 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/10.1089/jpm.2008.0178" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2008.0178</a>
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Title
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Center to Advance Palliative Care palliative care consultation service metrics: consensus recommendations
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Palliative Care; referral and consultation; Consensus; Practice Guidelines as Topic; Length of Stay; Wisconsin; Demography; Palliative Care; Biometry; Community Health Centers; Essential Data Set
Creator
An entity primarily responsible for making the resource
Weissman DE; Meier DE; Spragens LH
Description
An account of the resource
The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality improvement, and demonstration of program impact to hospital administrators, private funders, and policymakers. To develop a set of core measures, CAPC convened a consensus panel in 2008 to focus on the topic of operational metrics for consultation services. Operational metrics, as distinct from clinical, customer and financial metrics, describe the characteristics of patients seen on the consultation service, such as age, disease, location, referring service and disposition. The panel arrived at 12 metric domains, all but one of which can be used for either internal programmatic use or for external comparisons of service characteristics/impact between different hospitals. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care consultation teams are encouraged to collect and report outcomes for each of the twelve metric domains described here.
2008-12
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2008.0178" target="_blank" rel="noreferrer">10.1089/jpm.2008.0178</a>
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Type
The nature or genre of the resource
Journal Article
2008
Backlog
Biometry
Community Health Centers
Consensus
Demography
Essential Data Set
Humans
Journal Article
Journal of Palliative Medicine
Length Of Stay
Meier DE
Palliative Care
Practice Guidelines As Topic
Referral And Consultation
Spragens LH
Weissman DE
Wisconsin
-
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/10.1136/bmj.a3152" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.a3152</a>
Dublin Core
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Title
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Publication guidelines for quality improvement studies in health care: evolution of the SQUIRE project
Publisher
An entity responsible for making the resource available
Bmj (clinical Research Ed.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Consensus; Practice Guidelines as Topic; Interprofessional Relations; Quality of Health Care; Forecasting; RDF Project; Editorial Policies; Publishing/standards
Creator
An entity primarily responsible for making the resource
Davidoff F; Batalden PB; Stevens D; Ogrinc G; Mooney SE; SQUIRE development group
Description
An account of the resource
In 2005 we published draft guidelines for reporting studies of quality improvement, as the initial step in a consensus process for development of a more definitive version. The current article contains the revised version, which we refer to as standards for quality improvement reporting excellence (SQUIRE). This narrative progress report summarises the special features of improvement that are reflected in SQUIRE, and describes major differences between SQUIRE and the initial draft guidelines. It also briefly describes the guideline development process; considers the limitations of and unresolved questions about SQUIRE; describes ancillary supporting documents and alternative versions under development; and discusses plans for dissemination, testing, and further development of SQUIRE.
2009
Identifier
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<a href="http://doi.org/10.1136/bmj.a3152" target="_blank" rel="noreferrer">10.1136/bmj.a3152</a>
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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
2009
Backlog
Batalden PB
Bmj (clinical Research Ed.)
Consensus
Davidoff F
Editorial Policies
Forecasting
Interprofessional Relations
Journal Article
Mooney SE
Ogrinc G
Practice Guidelines As Topic
Publishing/standards
Quality Of Health Care
RDF Project
SQUIRE development group
Stevens D
-
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/10.1111/j.1365-2648.2006.03716.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2648.2006.03716.x</a>
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Title
A name given to the resource
Consulting the oracle: ten lessons from using the Delphi technique in nursing research
Publisher
An entity responsible for making the resource available
Journal Of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Humans; Consensus; Research Design; Reproducibility of Results; Delphi Technique; Adolescent Transitions; Nursing Research/methods
Creator
An entity primarily responsible for making the resource
Keeney S; Hasson F; McKenna H
Description
An account of the resource
AIM: The aim of this paper was to provide insight into the Delphi technique by outlining our personal experiences during its use over a 10-year period in a variety of applications. BACKGROUND: As a means of achieving consensus on an issue, the Delphi research method has become widely used in healthcare research generally and nursing research in particular. The literature on this technique is expanding, mainly addressing what it is and how it should be used. However, there is still much confusion and uncertainty surrounding it, particularly about issues such as modifications, consensus, anonymity, definition of experts, how 'experts' are selected and how non-respondents are pursued. DISCUSSION: This issues that arise when planning and carrying out a Delphi study include the definition of consensus; the issue of anonymity vs. quasi-anonymity for participants; how to estimate the time needed to collect the data, analyse each 'round', feed back results to participants, and gain their responses to this feedback; how to define and select the 'experts' who will be asked to participate; how to enhance response rates; and how many 'rounds' to conduct. CONCLUSION: Many challenges and questions are raised when using the Delphi technique, but there is no doubt that it is an important method for achieving consensus on issues where none previously existed. Researchers need to adapt the method to suit their particular study.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2648.2006.03716.x" target="_blank" rel="noreferrer">10.1111/j.1365-2648.2006.03716.x</a>
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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
2006
Adolescent Transitions
Backlog
Consensus
Delphi Technique
Hasson F
Humans
Journal Article
Journal Of Advanced Nursing
Keeney S
McKenna H
Nursing Research/methods
Reproducibility of Results
Research Design
-
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/10.1046/j.1365-2648.2003.02537.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1365-2648.2003.02537.x</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 Delphi technique: myths and realities
Publisher
An entity responsible for making the resource available
Journal Of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Consensus; Delphi Technique; Expert Testimony
Creator
An entity primarily responsible for making the resource
Powell C
Description
An account of the resource
AIMS: To outline the key concepts and principles of the Delphi technique. METHODS: Reference is made to a selection of studies that illustrate a variety of methodological interpretations. Drawing on Heshusius's concept of 'goodness criteria', particular emphasis is given to the question of scientific merit and means of evaluation. CONCLUSIONS: Although the technique should be used with caution, it appears to be an established method of harnessing the opinions of an often diverse group of experts on practice-related problems.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1365-2648.2003.02537.x" target="_blank" rel="noreferrer">10.1046/j.1365-2648.2003.02537.x</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
2003
Backlog
Consensus
Delphi Technique
Expert Testimony
Journal Article
Journal Of Advanced Nursing
Powell C
-
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/10.1136/bmj.326.7393.816" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.326.7393.816</a>
Dublin Core
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Title
A name given to the resource
Research methods used in developing and applying quality indicators in primary care
Publisher
An entity responsible for making the resource available
Bmj (clinical Research Ed.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Humans; Consensus; Quality of Health Care; Evidence-Based Medicine; Practice Guidelines; Health Care; Quality Indicators; Health Services Research/methods; Primary Health Care/standards
Creator
An entity primarily responsible for making the resource
Campbell SM; Braspenning J; Hutchinson A; Marshall MN
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmj.326.7393.816" target="_blank" rel="noreferrer">10.1136/bmj.326.7393.816</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
Description
An account of the resource
2003
2003
Backlog
Bmj (clinical Research Ed.)
Braspenning J
Campbell SM
Consensus
Evidence-based Medicine
Health Care
Health Services Research/methods
Humans
Hutchinson A
Journal Article
Marshall MN
Practice Guidelines
Primary Health Care/standards
Quality Indicators
Quality Of Health Care
-
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/10.1186/1472-6939-3-3" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-6939-3-3</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
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Consensus guidelines on analgesia and sedation in dying intensive care unit patients
Publisher
An entity responsible for making the resource available
Bmc Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Humans; Intensive Care Units; Terminally Ill; Consensus; Euthanasia; Suicide; Stress; Empirical Approach; Death and Euthanasia; Practice Guidelines; Pain/drug therapy; Active; Hypnotics and Sedatives/therapeutic use; Assisted; Terminal Care/standards; Psychological/drug therapy; Analgesics/therapeutic use; Palliative Care/methods/standards
Creator
An entity primarily responsible for making the resource
Hawryluck LA; Harvey WR; Lemieux-Charles L; Singer PA
Description
An account of the resource
BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. METHODS: Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12). RESULTS: After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. CONCLUSION: Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1472-6939-3-3" target="_blank" rel="noreferrer">10.1186/1472-6939-3-3</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).
Type
The nature or genre of the resource
Journal Article
2002
Active
Analgesics/therapeutic use
Assisted
Backlog
Bmc Medical Ethics
Consensus
Death and Euthanasia
Empirical Approach
Euthanasia
Harvey WR
Hawryluck LA
Humans
Hypnotics and Sedatives/therapeutic use
Intensive Care Units
Journal Article
Lemieux-Charles L
Pain/drug Therapy
Palliative Care/methods/standards
Practice Guidelines
Psychological/drug therapy
Singer PA
Stress
Suicide
Terminal Care/standards
Terminally Ill
-
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/10.1001/archinte.1995.00430060097012" target="_blank" rel="noreferrer">http://doi.org/10.1001/archinte.1995.00430060097012</a>
Dublin Core
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Title
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Decisions about life-sustaining treatment. Impact of physicians' behaviors on the family
Publisher
An entity responsible for making the resource available
Archives Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1995
Subject
The topic of the resource
Humans; Consensus; Withholding Treatment; Communication; Life Support Care; Physician's Role; Nurse's Role; Professional-Patient Relations; Disclosure; Empirical Approach; P.H.S.; Professional Patient Relationship; Research Support; U.S. Gov't; Death and Euthanasia; Interviews; decision making; Family/psychology; Practice Guidelines
Creator
An entity primarily responsible for making the resource
Tilden VP; Tolle SW; Garland MJ; Nelson CA
Description
An account of the resource
BACKGROUND: Despite the growing availability of advance directives, most patients in the intensive care unit lack written directives, and, therefore, consultation with families about treatment decisions remains the rule. In the context of decision making about withdrawing life-sustaining treatments, we investigated which physician and nurse behaviors families find supportive and which behaviors increase the family's burden. METHODS: We conducted intensive 1- to 2-hour-long individual interviews using a semistructured interview protocol with 32 family members of patients without advance directives whose deaths followed a stay in the intensive care unit and withdrawal of treatment. We analyzed more than 700 pages of verbatim interview data using content analysis techniques and achieved more than 90% interrater agreement on data codes. RESULTS: Themes emerged as families identified selected physician and nursing behaviors as helpful: encouraging advanced planning, timely communication, clarification of families' roles, facilitating family consensus, and accommodating family's grief. Behaviors that made families feel excluded or increased their burden included postponing discussions about treatment withdrawal, delaying withdrawal once scheduled, placing the full burden of decision making on one person, withdrawing from the family, and defining death as a failure. CONCLUSIONS: Study findings provide an increased understanding of the unmet needs of families and serve to guide physicians and nurses in reducing actions that increase families' burdens as they participate in treatment withdrawal decisions.
1995
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archinte.1995.00430060097012" target="_blank" rel="noreferrer">10.1001/archinte.1995.00430060097012</a>
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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
1995
Archives Of Internal Medicine
Backlog
Communication
Consensus
Death and Euthanasia
Decision Making
Disclosure
Empirical Approach
Family/psychology
Garland MJ
Humans
Interviews
Journal Article
Life Support Care
Nelson CA
Nurse's Role
P.H.S.
Physician's Role
Practice Guidelines
Professional Patient Relationship
Professional-patient Relations
Research Support
Tilden VP
Tolle SW
U.S. Gov't
Withholding Treatment
-
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/10.7326/0003-4819-132-5-200003070-00012" target="_blank" rel="noreferrer">http://doi.org/10.7326/0003-4819-132-5-200003070-00012</a>
Dublin Core
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Title
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Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids.
Publisher
An entity responsible for making the resource available
Annals Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Humans; Male; United States; Consensus; Treatment Refusal; Aged; Intention; Fluid Therapy; Morals; Food; Suicide; Non-U.S. Gov't; Professional Patient Relationship; Research Support; patient care team; Death and Euthanasia; Psychological; Stress; Ethics; Assisted; Hypnotics and Sedatives/administration & dosage; Double Effect; Palliative Care/legislation & jurisprudence/methods
Creator
An entity primarily responsible for making the resource
Quill TE; Byock IR; Panel ACP-ASIMEnd-of-Life Care Consensus
Description
An account of the resource
When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7326/0003-4819-132-5-200003070-00012" target="_blank" rel="noreferrer">10.7326/0003-4819-132-5-200003070-00012</a>
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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
2000
Aged
Annals Of Internal Medicine
Assisted
Backlog
Byock IR
Consensus
Death and Euthanasia
Double Effect
Ethics
Fluid Therapy
Food
Humans
Hypnotics and Sedatives/administration & dosage
Intention
Journal Article
Male
Morals
Non-U.S. Gov't
Palliative Care/legislation & jurisprudence/methods
Panel ACP-ASIMEnd-of-Life Care Consensus
Patient Care Team
Professional Patient Relationship
Psychological
Quill TE
Research Support
Stress
Suicide
Treatment Refusal
United States
-
Dublin Core
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Title
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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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1002/pon.4353" target="_blank" rel="noreferrer">http://doi.org/10.1002/pon.4353</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
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Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions
Publisher
An entity responsible for making the resource available
Psycho-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication Skill; Pediatric Nurse Practitioner; Child; Childhood Cancer; Clinical Article; Consensus; Family; Funding; Human; Needs Assessment; Palliative Therapy; Patient Assessment; Pediatrics; Role Playing; Self Evaluation; Training
Creator
An entity primarily responsible for making the resource
Kearney J
Description
An account of the resource
Communication between pediatric providers, patients, and their families is a key component of for children with serious illness, with broad implications for patient and family outcomes. Recommendations for effective and compassionate palliative communication in pediatrics are unique because of the 3-way relationship between providers, parents, and growing children, whose emerging autonomy requires special consideration. Memorial Sloan Kettering (MSK) has over 40 pediatric nurse practitioners (PNPs) providing primary oncologic care across outpatient and inpatient oncology settings. MSK's Comskil training program had a decade of experience training pediatric oncology MD fellows, but no program yet existed for the NPs so a needs assessment survey was conducted and a program was developed from 2012 to 2016. Methods: An anonymous, online survey was conducted of the MSK NPs (n = 42) that indicated high interest in training and low-overall confidence in particular targeted palliative care skills in pediatrics. A full training day including didactics, small group role play with feedback from expert facilitator, and peers was developed and conducted for all 42 NPs in 2013. A booster training was developed using novel role play methods to increase engagement, training relevance, and skills uptake based on course evaluations from this training. Results: Booster trainings have been recommended to improve uptake of skills through practice; however, little consensus exists on how and when to do boosters. On the basis of the theory of "active engagement," we designed boosters with custom role play scenarios based on PNP's clinical experiences, then used these in small group role play, after reviewing skills taught at the initial training. Standardized patient assessments, course evaluations and self-assessments pretraining, 2 weeks posttraining, and 6 months posttraining were conducted. Conclusions: Pediatric NPs working with children with serious illness benefit from palliative communication focused, pediatric-specific communication skills training. Nurse practitioner preferences, selfassessment, and skills' uptake outcomes will be discussed. Funding: Kanarek Family Foundation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pon.4353" target="_blank" rel="noreferrer">10.1002/pon.4353</a>
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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).
2017
Child
Childhood Cancer
Clinical Article
Communication Skill
Consensus
Family
Funding
Human
Kearney J
Needs Assessment
Oncology 2017 List
Palliative Therapy
Patient Assessment
Pediatric Nurse Practitioner
Pediatrics
Psycho-Oncology
Role Playing
Self Evaluation
Training
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
URL Address
<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">http://scholars.wlu.ca/scwk_faculty/12/</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
Research priorities in pediatric palliative care: a delphi study
Publisher
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Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Attitude of Health Personnel; Attitude to Health; Benchmarking; bereavement; Canada; Child; Consensus; Delphi Technique; Evidence-Based Practice; Family/psychology; Humans; Needs Assessment/organization & administration; Pain/prevention & control; Palliative Care/organization & administration; Pediatrics/organization & administration; Practice Guidelines as Topic; Psychological/prevention & control; Questionnaires; Research Design; Research/organization & administration; Stress
Creator
An entity primarily responsible for making the resource
Steele R; Fletcher JM; Bosma H; Siden H; Straatman L; Fleming C; Cadell S; Davies B
Description
An account of the resource
Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinents lines of research. Method: A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada. Results: Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life? Conclusions: These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">scwk_faculty/12</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).
2007
Attitude Of Health Personnel
Attitude To Health
Benchmarking
Bereavement
Bosma H
Cadell S
Canada
Child
Consensus
Davies B
Delphi Technique
Evidence-based Practice
Family/psychology
Fleming C
Fletcher JM
Humans
Journal Of Palliative Care
Needs Assessment/organization & administration
Pain/prevention & control
Palliative Care/organization & Administration
Pediatrics/organization & Administration
Practice Guidelines As Topic
Psychological/prevention & control
Questionnaires
Research Design
Research/organization & administration
Siden H
Steele R
Straatman L
Stress
-
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 2017 List
URL Address
<a href="http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905" target="_blank" rel="noreferrer">http://pediatrics.aappublications.org/content/early/2017/08/24/peds.2017-1905</a>
Notes
<p>Using Smart Source Parsing<br />( (no pagination), Article Number: e20171905. Date of Publication: September 2017</p>
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
Guidance on forgoing life-sustaining medical treatment
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
2017
Subject
The topic of the resource
Apparent Life Threatening Event/th [therapy]; Life-sustaining Medical Treatment; Medical Procedures; Practice Guideline; Article; Awareness; Caregiver; Child Abuse; Child Care; Clinical Decision Making; Comatose Patient; Consensus; Consultation; Critical Illness/th [therapy]; Death; Death By Neurologic Criteria; Developmental Disorder/th [therapy]; Disease Burden; Disease Course; Ethical Decision Making; Extremely Low Gestational Age; Family Decision Making; Family Stress; Foster Care; Gestational Age; Goal Attainment; Health Belief; High Risk Population; Human; Hydration; Imminent Death; Informed Consent; Intensive Care; Interpersonal Communication; Legal Aspect; Medical Ethics; Medical Expert; Medical Information; Medically Administered Nutrition And Hydration; Medical Specialist; Neglect; Neurologic Disease/di [diagnosis]; Nutrition; Oxygenation; Pain/th [therapy]; Palliative Therapy; Patient Care Planning; Pediatrician; Priority Journal; Prognosis; Quality Of Life; Resuscitation; Shared Decision Making; Social Support; Spiritual Care; Survival; Teamwork; Terminal Care; Tissue Perfusion; Uncertain Prognosis
Creator
An entity primarily responsible for making the resource
Weise KL; Okun AL; Carter BS; Christian CW; Katz AL; Laventhal N; MacAuley RC; Moon MR; Opel DJ; Statter MB; Davies D; Dell ML; Diekema DS; Klipstein S; Elster N; Rivera F; Feudtner C; Boss RD; Hauer JM; Humphrey LM; Klick J; Linebarger JS; Parker S; Lord B; Imaizumi S; Guinn-Jones M; Flaherty EG; Gavril AR; Idzerda SM; Laskey A; Legano LA; Leventhal JM; Fortson BL; MacMillan H; Stedt E; Hurley TP
Description
An account of the resource
Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the child leads to an assessment that forgoing life-sustaining medical treatment (LSMT) is ethically supportable or advisable. Parents are given wide latitude in decision-making concerning end-of-life care for their children in most situations. Collaborative decision-making around LSMT is improved by thorough communication among all stakeholders, including medical staff, the family, and the patient, when possible, throughout the evolving course of the patient's illness. Clear communication of overall goals of care is advised to promote agreed-on plans, including resuscitation status. Perceived disagreement among the team of professionals may be stressful to families. At the same time, understanding the range of professional opinions behind treatment recommendations is critical to informing family decision-making. Input from specialists in palliative care, ethics, pastoral care, and other disciplines enhances support for families and medical staff when decisions to forgo LSMT are being considered. Understanding specific applicability of institutional, regional, state, and national regulations related to forgoing LSMT is important to practice ethically within existing legal frameworks. This guidance represents an update of the 1994 statement from the American Academy of Pediatrics on forgoing LSMT.
Identifier
An unambiguous reference to the resource within a given context
<a class="aap-doi-text" href="https://doi.org/10.1542/peds.2017-1905" target="_blank" rel="noreferrer">10.1542/peds.2017-1905</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).
2017
Apparent Life Threatening Event/th [therapy]
Article
Awareness
Boss RD
Caregiver
Carter BS
Child Abuse
Child Care
Christian CW
Clinical Decision Making
Comatose Patient
Consensus
Consultation
Critical Illness/th [therapy]
Davies D
Death
Death By Neurologic Criteria
Dell ML
Developmental Disorder/th [therapy]
Diekema DS
Disease Burden
Disease Course
Elster N
Ethical Decision Making
Extremely Low Gestational Age
Family Decision Making
Family Stress
Feudtner C
Flaherty EG
Fortson BL
Foster Care
Gavril AR
Gestational Age
Goal Attainment
Guinn-Jones M
Hauer JM
Health Belief
High Risk Population
Human
Humphrey LM
Hurley TP
Hydration
Idzerda SM
Imaizumi S
Imminent Death
Informed Consent
Intensive Care
Interpersonal Communication
Katz AL
Klick J
Klipstein S
Laskey A
Laventhal N
Legal Aspect
Legano LA
Leventhal JM
Life-sustaining Medical Treatment
Linebarger JS
Lord B
MacAuley RC
MacMillan H
Medical Ethics
Medical Expert
Medical Information
Medical Procedures
Medical Specialist
Medically Administered Nutrition And Hydration
Moon MR
Neglect
Neurologic Disease/di [diagnosis]
November 2017 List
Nutrition
Okun AL
Opel DJ
Oxygenation
Pain/th [therapy]
Palliative Therapy
Parker S
Patient Care Planning
Pediatrician
Pediatrics
Practice Guideline
Priority Journal
Prognosis
Quality Of Life
Resuscitation
Rivera F
shared decision making
Social Support
Spiritual Care
Statter MB
Stedt E
Survival
Teamwork
Terminal Care
Tissue Perfusion
Uncertain Prognosis
Weise KL
-
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 2017 List
Notes
<p>1098-4275<br />Sisk, Bryan A<br />DuBois, James<br />Kodish, Eric<br />Wolfe, Joanne<br />Feudtner, Chris<br />Journal Article<br />United States<br />Pediatrics. 2017 Jun;139(6). pii: e20170234. doi: 10.1542/peds.2017-0234. Epub 2017 May 12.</p>
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 Decisional Discord: The Pediatrician's Role When Child and Parents Disagree
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
2017
Subject
The topic of the resource
Decision Making; Dissent And Disputes; Parental Consent; Parent-child Relations; Pediatricians; Physician's Role; Adolescent; Child; Consensus; Female; Humans; Male; Mental Competency; Models Psychological
Creator
An entity primarily responsible for making the resource
Sisk BA; DuBois J; Kodish E; Wolfe J; Feudtner C
Description
An account of the resource
From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician has the challenging task of guiding the family to a final decision. Unresolved discord can affect family cohesiveness, patient adherence, and patient self-management. In this article, we outline 3 models for the pediatrician's role in the setting of decisional discord: deference, advocative, and arbitrative. In the deference model, the pediatrician prioritizes parental decision-making authority. In the advocative model, the pediatrician advocates for the child's preference in decision-making so long as the child's decision is medically reasonable. In the arbitrative model, the pediatrician works to resolve the conflict in a balanced fashion. Although each model has advantages and disadvantages, the arbitrative model should serve as the initial model in nearly all settings. The arbitrative model is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children. We also highlight, however, occasions when the deference or advocative models may be more appropriate. Physicians should keep all 3 models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation.
Identifier
An unambiguous reference to the resource within a given context
10.1542/peds.2017-0234
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).
2017
Adolescent
Child
Consensus
Decision Making
Dissent And Disputes
DuBois J
Female
Feudtner C
Humans
Kodish E
Male
Mental Competency
Models Psychological
November 2017 List
Parent-child Relations
Parental Consent
Pediatricians
Pediatrics
Physician's Role
Sisk BA
Wolfe J