1
40
14
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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July List 2023
URL Address
<a href="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.siny.2023.101438</a>
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Title
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Ethics at the end of life in the newborn intensive care unit: Conversations and decisions
Publisher
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Seminars in Fetal and Neonatal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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bioethics; conversation; decision making; ethics; neonatal intensive care unit; treatment withdrawal; active euthanasia; artificial ventilation; controlled study; critically ill patient; human; hydration; hypoxic ischemic encephalopathy; infant; Infant Newborn; Intensive Care Units; Intensive Care Units Neonatal; neonatologist; newborn; nutrition; resuscitation; review
Creator
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Mercurio MR; Gillam L
Description
An account of the resource
The unexpected birth of a critically ill baby raises many ethical questions for neonatologists. Some of these are obviously ethical questions, about whether to attempt resuscitation, and, if the baby is resuscitated and survives, whether to continue life sustaining interventions. Other ethical decisions are more related to what to say rather than what to do. Although less obvious, they are equally as important, and may also have far-reaching ramifications. This essay presents the story of a newborn with profound hypoxic-ischemic encephalopathy, and reviews decisions regarding resuscitation, withdrawal of mechanical ventilation, withdrawal of medically administered nutrition and hydration, and active euthanasia. An overview of the ethical issues at work at each decision point is presented, as well as guidance regarding discussions with parents throughout the process, including specific wording. This may serve as a helpful guide for ethical deliberation, and helpful scripting for parental discussion, in similar cases.Copyright © 2023 Elsevier Ltd
Identifier
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<a href="http://doi.org/10.1016/j.siny.2023.101438" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2023.101438</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
active euthanasia
Artificial Ventilation
Bioethics
Controlled Study
Conversation
Critically Ill Patient
Decision Making
Ethics
Gillam L
Human
Hydration
hypoxic ischemic encephalopathy
Infant
Infant Newborn
Intensive Care Units
Intensive Care Units Neonatal
July List 2023
Mercurio MR
Neonatal Intensive Care Unit
Neonatologist
Newborn
Nutrition
Resuscitation
Review
Seminars in Fetal and Neonatal Medicine
Treatment Withdrawal
-
Dublin Core
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Title
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January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January List 2023
URL Address
<a href="http://doi.org/10.1186/s13052-022-01374-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s13052-022-01374-8</a>
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Title
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New insights in pediatrics in 2021: choices in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, haematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine
Publisher
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Italian Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Communicable Diseases; Critical Care; Endocrinology; Genetics; Hematology; Immunology; Internal Medicine; Medical Allergy; Neonatology; Neurology; Nutrition; Palliative Care; Pediatrics Specialties; Respiratory Tract Diseases; Telemedicine
Creator
An entity primarily responsible for making the resource
Caffarelli C; Santamaria F; Piro E; Basilicata S; Delle Cave V; Cipullo M; Bernasconi S; Corsello G
Description
An account of the resource
In this review, we report the developments across pediatric subspecialties that have been published in the Italian Journal of Pediatrics in 2021. We highlight advances in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, hematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine.
Identifier
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<a href="http://doi.org/10.1186/s13052-022-01374-8" target="_blank" rel="noreferrer noopener">10.1186/s13052-022-01374-8</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).
Critical Care
Palliative Care
2022
Basilicata S
Bernasconi S
Caffarelli C
Cipullo M
Communicable Diseases
Corsello G
Delle Cave V
Endocrinology
Genetics
Hematology
Immunology
Internal Medicine
Italian Journal of Pediatrics
January List 2023
Medical Allergy
Neonatology
Neurology
Nutrition
Pediatrics Specialties
Piro E
Respiratory Tract Diseases
Santamaria F
Telemedicine
-
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Title
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May 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2021 List
URL Address
<a href="http://doi.org/10.7748/ncyp.2020.e1277" target="_blank" rel="noreferrer noopener">http://doi.org/10.7748/ncyp.2020.e1277</a>
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Title
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Use of subcutaneous fluids in palliative care with children: a case study
Publisher
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Nursing Children and Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
artificial hydration; child health; clinical; end of life care; ethical issues; fluid management; hospices; Humans; hydration; Hypodermoclysis/methods/standards; nutrition; palliative care; Palliative Care/methods/standards; parents; Patient Comfort/standards; Pediatrics/instrumentation/methods; professional; Quality of Life/psychology; terminal care
Creator
An entity primarily responsible for making the resource
Smith A; Brimble MJ
Description
An account of the resource
Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequate hydration will often be part of symptom management but may be associated with several practical and ethical challenges. Subcutaneous fluid administration in children's palliative care is relatively uncommon, so there is a lack of evidence on the topic. This article demonstrates that it is feasible to use subcutaneous fluid therapy in the children's hospice setting to address patients' hydration needs and manage their symptoms. It presents a case study of a child who received subcutaneous fluids in a children's hospice for dehydration and myoclonus. It uses the case study to discuss subcutaneous fluid therapy in the children's palliative care setting, including its indications and contraindications, administration, complications and important factors to consider.
Identifier
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<a href="http://doi.org/10.7748/ncyp.2020.e1277" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2020.e1277</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
artificial hydration
Brimble MJ
Child Health
Clinical
End Of Life Care
ethical issues
fluid management
Hospices
Humans
Hydration
Hypodermoclysis/methods/standards
May 2021 List
Nursing Children and Young People
Nutrition
Palliative Care
Palliative Care/methods/standards
Parents
Patient Comfort/standards
Pediatrics/instrumentation/methods
Professional
Quality Of Life/psychology
Smith A
Terminal Care
-
Dublin Core
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Title
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2020 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 2020 List
URL Address
<a href="http://doi.org/10.1136/bmjgh-2020-002613" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjgh-2020-002613</a>
Dublin Core
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Title
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Long-term outcomes for children with disability and severe acute malnutrition in Malawi
Publisher
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BMJ Global Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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child health; nutrition
Creator
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Lelijveld N; Groce N; Patel S; Nnensa T; Chimwezi E; Gladstone M; Mallewa M; Wells J; Seal A; Kerac M
Description
An account of the resource
INTRODUCTION: Severe acute malnutrition (SAM) and disability are major global health issues. Although they can cause and influence each other, data on their co-existence are sparse. We aimed to describe the prevalence and patterns of disability among a cohort of children with SAM. METHODS: A longitudinal cohort study in Malawi followed SAM survivors up to 7 years postdischarge. Clinical and anthropometric profiles were compared with sibling and community controls. Disability at original admission was identified clinically; at 7-year follow-up a standardised screening tool called 'the Washington Group Questionnaire' was used. RESULTS: 60/938 (6.4%) of admissions to SAM treatment had clinically obvious disability at admission. Post-treatment mortality was high, with only 11/60 (18%) surviving till 7-year follow-up. SAM children with a disability at admission had 6.99 (95% CI 3.49 to 14.02; p<0.001) greater risk of dying compared with children without disability. They were also older, less likely to be HIV positive or have oedema and more severely malnourished. Long-term survivors were more stunted, had less catch-up growth, smaller head circumference, weaker hand grip strength and poorer school achievement than non-disabled survivors.The Washington Group Questionnaire confirmed disability in all who had been identified clinically, and identified many who had not been previously flagged. CONCLUSION: Disability is common among children affected by SAM. Those with disability-associated SAM have greatly increased risk of dying even if they survive the initial episode of malnutrition. Survivors have poorer growth, physical strength and school achievement. To enable all children to survive and thrive post-SAM, it is vital to focus more on those with disabilities. SAM treatment programmes should consider using not just clinical assessment but structured assessments to better identify at-risk individuals as well as understand the population of children for which they are developing services.
Identifier
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<a href="http://doi.org/10.1136/bmjgh-2020-002613" target="_blank" rel="noreferrer noopener">10.1136/bmjgh-2020-002613</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
BMJ Global Health
Child Health
Chimwezi E
Developing World 2020 List
Gladstone M
Groce N
Kerac M
Lelijveld N
Mallewa M
Nnensa T
Nutrition
Patel S
Seal A
Wells J
-
Dublin Core
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Title
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2020 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 2020 List
URL Address
<a href="http://doi.org/10.1007/978-3-030-25804-7_15" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/978-3-030-25804-7_15</a>
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Title
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Pediatric oncology nursing research in low- and middle-income countries
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
fatigue; stress; human; palliative therapy; priority journal; cancer survival; health care personnel; pain; quality of life; posttraumatic stress disorder; risk factor; low income country; middle income country; cancer incidence; nutrition; caregiver; sepsis; treatment response; infant mortality; geographic distribution; malnutrition; high income country; methodology; nursing care; pediatric oncology nursing; caregiver burden; gross national income; Burkitt lymphoma; lifestyle; alternative medicine; caregiver burnout; cytotoxicity; economic status; immune status; Impact of Events Scale; Kaposi sarcoma; nurse training; nursing practice; nursing science; Southeast Asian; Southern Europe; traditional medicine
Creator
An entity primarily responsible for making the resource
Challinor J M; Day S W; Afungchwi G M; Alqudimat M R
Description
An account of the resource
Cancer and other non-communicable diseases are a growing public health issue now that infectious disease control (e.g., HIV/AIDS, malaria, and tuberculosis) has made great strides across low- and middle-income countries (L&MIC). The large majority (85%) of children and adolescents with cancer reside in L&MIC where children represent up to 50% of a country's population, and resources are severely limited for the comprehensive cancer care these patients require. Nursing care of these patients and families must be based on research performed in country to account for challenges in access to care and limited resources and opportunities for nursing specialization. Examples of these challenges include cancer stigma, poverty, traditional medicine practices, cultural norms and decision-making hierarchies, limited education opportunities, lack of universal healthcare, and poor transportation infrastructure to access tertiary care. This chapter summarizes the 137 articles in five languages from 2008 to 2018 that communicate nursing research findings pertaining to pediatric oncology issues from L&MIC across all six World Health Organization (WHO) regions. Despite little or no funding, nurses in academic and clinical settings are actively exploring care priorities in their settings, most often (but not limited to) addressing parent coping, nurse and nursing care issues including symptom management (pain and fatigue, especially), and children's quality of life. The nursing research evidence presented here will begin to inform personalized and precision health in L&MIC to ensure that care is culturally acceptable and considers the environment, nursing practice, nursing science, family, lifestyle behaviors, and response to disease and treatment of this large patient population.
Identifier
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<a href="http://doi.org/10.1007/978-3-030-25804-7_15" target="_blank" rel="noreferrer noopener">10.1007/978-3-030-25804-7_15</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
Afungchwi G M
Alqudimat M R
alternative medicine
Burkitt lymphoma
cancer incidence
Cancer Survival
Caregiver
Caregiver Burden
caregiver burnout
Challinor J M
Cytotoxicity
Day S W
Developing World 2020 List
economic status
Fatigue
geographic distribution
gross national income
Health Care Personnel
high income country
Human
immune status
Impact of Events Scale
Infant Mortality
Kaposi sarcoma
lifestyle
low income country
malnutrition
Methodology
middle income country
nurse training
Nursing Care
Nursing Practice
nursing science
Nutrition
Pain
Palliative Therapy
Pediatric Oncology
pediatric oncology nursing
PostTraumatic Stress Disorder
Priority Journal
Quality Of Life
risk factor
Sepsis
Southeast Asian
Southern Europe
Stress
traditional medicine
treatment response
-
Dublin Core
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Title
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November 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
November 2020 List
URL Address
<a href="https://hosppeds.aappublications.org/content/early/2020/09/07/hpeds.2020-0062" target="_blank" rel="noreferrer noopener">https://hosppeds.aappublications.org/content/early/2020/09/07/hpeds.2020-0062 </a>
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Title
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Caregiver Decisional Conflict Before and After Consultation About Gastrostomy Tube Placement
Publisher
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Hospital Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
caregivers; children with special health care needs; gastronomy tube; nutrition
Creator
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Nelson K E; Oppedisano S; Patel M L; Mahant S; Cohen E
Description
An account of the resource
OBJECTIVES: Families describe decision-making about gastrostomy tube (g-tube) placement as challenging. We measured caregiver decisional conflict before and after initial g-tube consultation to evaluate the potential benefit of a decision aid and feasibility in testing it. METHODS: Families presenting for initial consultation about g-tube placement completed the decisional conflict scale (DCS) at 1 or 2 of 3 time points: before consultation, after consultation, and after viewing a video. The decision support consultation was a 2-hour structured meeting with a pediatric hospitalist, nurse practitioner, and dietitian that was focused on clarifying the indication, feasibility, safety, and family values around tube placement. The video described decision-making and lived experiences of families with tube feeding. RESULTS: We measured the decisional conflict of 61 caregivers. Preconsultation decisional conflict scores were high (mean = 38.7), but there was substantial variation between families (SD = 19.4). Baseline scores did not vary between clinically relevant subgroups. Postconsultation DCS scores were lower (17.9 and SD = 13.5 for consult alone; 12.7 and SD = 13.2 for consult with video). Three caregivers (7.7%) of families had residual decisional conflict scores >37.5, the threshold conventionally associated with decision delay. CONCLUSIONS: Measuring decisional conflict among caregivers deciding about pediatric g-tube is feasible during the clinical encounter. Residual decisional conflict after our institution’s current decision support consultation model (with or without an additional video) was low, so development of an additional structured decision aid is not warranted. Further study of preconsult DCS variability across different clinical subgroups may help identify families benefiting from additional decisional support.
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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
Caregivers
Children With Special Health Care Needs
Cohen E
gastronomy tube
Hospital Pediatrics
Mahant S
Nelson K E
November 2020 List
Nutrition
Oppedisano S
Patel M L
-
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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June 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
June 2020 List
URL Address
<a href="http://doi.org/10.1007/s00455-019-10022-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00455-019-10022-z</a>
Dublin Core
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Title
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Parents' experiences of feeding, swallowing, and nutrition in children receiving palliative care
Publisher
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Dysphagia
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
children; nutrition; nutritional needs; palliative care; parent experiences; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Pyke H; Norton S; Blaakman S W; Korones D N
Description
An account of the resource
Purpose: Parents caring for children receiving palliative care due to life-threatening illnesses face tremendous stressors, including providing nutrition to their child. Very little is known about this experience or how parents manage nutritional needs amidst the uncertainty of the illness. The purpose of this study was to explore parents' experiences, including strategies employed to cope with stressors and manage the feeding, swallowing, and nutrition of their children. Method(s): A qualitative descriptive design was used. Data was collected from 20 parents and 20 children. The parents (17 women) were aged 25-55 (mean 36). Children ranged from 11 days to 5 years (mean 15 months) with diagnoses including neurological conditions (6), congenital heart malformations (6), mitochondrial disorders (2), prematurity (8), and cancer (1). Data from parents: interviews, field observations, and levels of distress. Data from children was abstracted from their medical records. Analysis is ongoing. Interviews were transcribed and are being coded using open and process coding. Other data is being used to describe the sample and provide context. Result(s): (1) Guilt and grief are prominent for parents with feelings of failure as a parent. Distress levels were high related to the overall experience and the feeding, swallowing, and nutrition issues. (2) Parents cope by normalizing their experiences, taking it day by day, and maintaining optimism. (3) The projected trajectory of the child's illness affected the parents' experiences. (4) Feeding and nutrition management included taking part in providing nutrition in the manner best for the child and finding alternative ways to nurture and bond with the child. Parents relied on support of family, other parents, and online groups. Good interprofessional communication was felt to be key to good care for the child. Conclusions (Including Clinical Relevance): Having a child with a life-threatening illness, affecting the parent's ability to feed the child, is fraught with grief, high levels of distress, and difficulty achieving the parenting role. Over time parents adapt and modify their role. Parents expressed a need for additional support and training to manage their child's nutrition. Health care professionals must take into account the emotional burden that parents experience. Services should be family-centered with support and training for parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00455-019-10022-z" target="_blank" rel="noreferrer noopener">10.1007/s00455-019-10022-z</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
Blaakman S W
Children
Dysphagia
June 2020 List
Korones D N
Norton S
Nutrition
nutritional needs
Palliative Care
Parent Experiences
Pediatric Palliative Care
Pyke H
-
Dublin Core
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Title
A name given to the resource
2019 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 2019 List
URL Address
<a href="http://doi.org/10.6004/jnccn.2018.7174" target="_blank" rel="noreferrer noopener">http://doi.org/10.6004/jnccn.2018.7174</a>
Dublin Core
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Title
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Situational analysis and needs assessment regarding the availability and extent of pediatric palliative care services in the philippines
Publisher
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JNCCN Journal of the National Comprehensive Cancer Network
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
awareness; behavior change; care behavior; caregiver; child; childhood cancer; conference abstract; controlled study; counseling; financial management; health care delivery; health care personnel; health care planning; human; interview; long term survival; needs assessment; nutrition; palliative therapy; Philippines; psychosocial care; travel
Creator
An entity primarily responsible for making the resource
Cajucom L A N; Ramos R C; Manago R K B; Fuentes R K T; Garcia P G; Ridulme Q R; Oruga M D P; Vinas M J G
Description
An account of the resource
Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients in the Philippines are diagnosed at advanced stages (Lecciones, 2015). Abandonment of treatment is high at 80%. Only about 10%- 20% of clients attain long-term survival despite availability of multidisciplinary management. These outcomes reflect the gap in service delivery for pediatric oncology clients (Ferlay et al, 2012). Therefore, to improve accessibility to healthcare, it is necessary to determine the perceived palliative care needs of clients, their caregivers, and healthcare providers.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.6004/jnccn.2018.7174" target="_blank" rel="noreferrer noopener">10.6004/jnccn.2018.7174</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
Awareness
behavior change
Cajucom L A N
care behavior
Caregiver
Child
Childhood Cancer
conference abstract
Controlled Study
Counseling
Developing World 2019 List
financial management
Fuentes R K T
Garcia P G
Health Care Delivery
Health Care Personnel
health care planning
Human
Interview
JNCCN Journal of the National Comprehensive Cancer Network
long term survival
Manago R K B
Needs Assessment
Nutrition
Oruga M D P
Palliative Therapy
Philippines
psychosocial care
Ramos R C
Ridulme Q R
travel
Vinas M J G
-
Dublin Core
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1055/s-0034-1391308" target="_blank" rel="noreferrer noopener">http://doi.org/10.1055/s-0034-1391308</a>
Dublin Core
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Title
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A two-step multidisciplinary approach to treat recurrent esophageal strictures in children with epidermolysis bullosa dystrophica
Publisher
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Endoscopy
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Male; Treatment Outcome; Follow-Up Studies; Child; Humans; Adolescent; Female; Child Preschool; Infant; Recurrence; Combined Modality Therapy; Gastrostomy; Dilatation/methods; Epidermolysis Bullosa Dystrophica/complications; Esophageal Stenosis/etiology/therapy; feeding difficulties; Epidermolysis Bullosa; surgical intervention; orthograde balloon dilation; retrograde dilation; growth improvement; nutrition
Creator
An entity primarily responsible for making the resource
Vowinkel T; Laukoetter M; Mennigen R; Hahnenkamp K; Gottschalk A; Boschin M; Frosch M; Senninger N; Tubergen D
Description
An account of the resource
In children with severe generalized recessive dystrophic epidermolysis bullosa (RDEB), esophageal scarring leads to esophageal strictures with dysphagia, followed by malnutrition and delayed development. We describe a two-step multidisciplinary therapeutic approach to overcome malnutrition and growth retardation. In Step 1, under general anesthesia, orthograde balloon dilation of the esophagus is followed by gastrostomy creation using a direct puncture technique. In Step 2, further esophageal strictures are treated by retrograde dilation via the established gastrostomy; this step requires only a short sedation period. A total of 12 patients (median age 7.8 years, range 6 weeks to 17 years) underwent successful orthograde balloon dilation of esophageal strictures combined with direct puncture gastrostomy. After 12 and 24 months in 11 children, a substantial improvement of growth and nutrition was achieved (body mass index [BMI] standard deviation score [SDS] + 0.59 and + 0.61, respectively). In one child, gastrostomy was removed because of skin ulcerations after 10 days. Recurrent esophageal strictures were treated successfully in five children. The combined approach of balloon dilation and gastrostomy is technically safe in children with RDEB, and helps to promote catch-up growth and body weight. In addition, recurrent esophageal strictures can be treated successfully without general anesthesia in a retrograde manner via the established gastrostomy.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/s-0034-1391308" target="_blank" rel="noreferrer noopener">10.1055/s-0034-1391308</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).
2015
Adolescent
Boschin M
Child
Child Preschool
Combined Modality Therapy
Dilatation/methods
Endoscopy
epidermolysis bullosa
Epidermolysis Bullosa Dystrophica/complications
Esophageal Stenosis/etiology/therapy
feeding difficulties
Female
Follow-up Studies
Frosch M
Gastrostomy
Gottschalk A
growth improvement
Hahnenkamp K
Humans
Infant
Laukoetter M
Male
Mennigen R
Nutrition
orthograde balloon dilation
Recurrence
retrograde dilation
Senninger N
surgical intervention
Treatment Outcome
Tubergen D
Vowinkel T
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1007/s00383-007-2100-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s00383-007-2100-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
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Non-endoscopic percutaneous gastrostomy placement in children with recessive dystrophic epidermolysis bullosa
Publisher
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Pediatric Surgery International
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Pediatrics; Surgery; anesthesia; epidermolysis bullosa; management; dilation; esophageal strictures; "Push"; chile; gastrostomy; iind international-symposium; non-endoscopic percutaneous gastrostomy; nutrition; santiago; feeding difficulties; surgical intervention; non-endoscopic percutaneous gastrostomy; gastrostomy tube placement
Creator
An entity primarily responsible for making the resource
Stehr W; Farrell M K; Lucky A W; Johnson N D; Racadio J M; Azizkhan R G
Description
An account of the resource
Recessive dystrophic epidermolysis bullosa (RDEB) is associated with high nutritional demands, esophageal strictures and dysphagia. About one quarter of the patients require gastrostomy tube placement to maintain adequate nutritional status. To minimize trauma to the skin and pharyngoesophageal mucosa caused by commonly used gastrostomy tube insertion techniques, we used a non-endoscopic, percutaneous, image-guided approach. This approach combines the use of ultrasound for mapping of the liver and spleen, water-soluble contrast enema to visualize the colon, and gastric insufflation to define the stomach. The gastrostomy tube is replaced by a low-profile button gastrostomy tube 10-12 weeks postoperatively. The five female patients reported in this series ranged in age from 6 to 9 years. They all tolerated the procedure well and no perioperative complications were encountered. All were able to tolerate feedings on postoperative day 1 and all underwent successful replacement of gastrostomy tubes by low-profile button tubes. Our experience suggests that a non-endoscopic, image-guided approach to gastrostomy tube placement offers a safe, effective, and minimally traumatic alternative to more commonly used approaches. It minimizes the risk of procedure-related morbidity and leads to overall improvement in the quality of life. As such, we strongly recommend that it be included in the treatment armamentarium for patients with epidermolysis bullosa and nutritional failure.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00383-007-2100-x" target="_blank" rel="noreferrer noopener">10.1007/s00383-007-2100-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).
"Push"
2008
Anesthesia
Azizkhan R G
Chile
dilation
epidermolysis bullosa
Esophageal strictures
Farrell M K
feeding difficulties
Gastrostomy
gastrostomy tube placement
iind international-symposium
Johnson N D
Lucky A W
Management
non-endoscopic percutaneous gastrostomy
Nutrition
Pediatric Surgery International
Pediatrics
Racadio J M
santiago
Stehr W
Surgery
surgical intervention
-
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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August 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
August 2019 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.457" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2019-rcpch.457</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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End of life care in children with neurodisability and concurrent palliative care needs: An audit of local Paediatric palliative services
Publisher
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Archives of Disease in Childhood
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; female; human; male; palliative therapy; awareness; clinical article; terminal care; pain; school child; conference abstract; decision making; monitoring; Canavan disease; cerebral palsy; disorders of mitochondrial functions; documentation; medical specialist; nutrition; Rett syndrome; secondary health care; seizure; social care; spinal muscular atrophy
Creator
An entity primarily responsible for making the resource
Hqli F; Santhanam G
Description
An account of the resource
Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal and specialist paediatric palliative care (PPC) services should therefore be available depending on the child's needs. In our local borough there is a distinct group of children with complex neurodisabilities requiring input from hospital and community paediatricians, and the specialist PPC team. This audit aims to assess whether the current palliative care provided to these children is meeting the standards set by NICE guidance (2016). Methods Approval was granted by the Clinical Effectiveness Unit and audit lead locally. Standards set by NICE guidance (NG61) were used, with a target compliance of 100%. Eleven children were identified to have a neurodisability with ongoing PPC input. Primary and secondary care health records were used for collection of data, which was subsequently analysed on a password-protected spreadsheet. Results There were nine males and two females, with a mean age of 10.44 years. Underlying diagnoses include cerebral palsy (n=4); leukodystrophy (n=2); spinal muscular atrophy, movement disorder, Canavan syndrome, mitochondrial disease, and Rett syndrome (n=1 each). All children were enterally fed. Four areas of interest within the NICE guidance were identified for data collection: care planning and support, Advance Care Plan (ACP), symptom management, and input from the PPC team. Results showed that symptoms, growth and nutrition, and social care needs were addressed in all children (100%). 82% were reviewed by the PPC team in the past year; 88% had their medications adjusted accordingly when appropriate; and 91% had an ACP in place. Conclusions This audit demonstrated parents' and carers' involvement in the decision-making process for the child and their awareness of the child's life-limiting condition; adequate management of symptoms, monitoring of growth and nutrition; and the presence of an ACP in most children. Identified areas for development include having a named medical specialist for each child; regular review of the ACP by the PPC team; and clear documentation of seizure management in the child's ACP, and the stepwise management of pain.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2019-rcpch.457" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.457</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).
2019
Archives of Disease in Childhood
August 2019 List
Awareness
Canavan disease
Cerebral Palsy
Child
Clinical Article
conference abstract
Decision Making
disorders of mitochondrial functions
Documentation
Female
Hqli F
Human
Male
Medical Specialist
Monitoring
Nutrition
Pain
Palliative Therapy
Rett syndrome
Santhanam G
School Child
secondary health care
Seizure
Social Care
Spinal Muscular Atrophy
Terminal 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/10.1001/jama.1994.03520160047041" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.1994.03520160047041</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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Comfort care for terminally ill patients. The appropriate use of nutrition and hydration
Publisher
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Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
1994
Subject
The topic of the resource
Female; Humans; Male; Withholding Treatment; Prospective Studies; Aged; Middle Aged; New York; Risk Assessment; Fluid Therapy; Parenteral Nutrition; quality of life; 80 and over; Empirical Approach; Death and Euthanasia; Hunger; Nursing Homes/standards; Nutrition; NY); Palliative Care/psychology; Psychological; St. John's Home (Rochester; Stress; Terminal Care/methods/psychology/standards; Thirst; Xerostomia/therapy
Creator
An entity primarily responsible for making the resource
McCann RM; Hall WJ; Groth-Juncker A
Description
An account of the resource
OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation. DESIGN--Prospective evaluation of consecutively admitted terminally ill patients treated in a comfort care unit. SETTING--Ten-bed comfort care unit in a 471-bed long-term care facility. PARTICIPANTS--Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit. MAIN OUTCOME MEASURES--Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients. RESULTS--Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially. Similarly, 20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness. In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips. Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients. CONCLUSIONS--In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.
1994
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.1994.03520160047041" target="_blank" rel="noreferrer">10.1001/jama.1994.03520160047041</a>
Rights
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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).
Type
The nature or genre of the resource
Journal Article
1994
80 And Over
Aged
Backlog
Death and Euthanasia
Empirical Approach
Female
Fluid Therapy
Groth-Juncker A
Hall WJ
Humans
Hunger
JAMA
Journal Article
Male
McCann RM
Middle Aged
New York
Nursing Homes/standards
Nutrition
NY)
Palliative Care/psychology
Parenteral Nutrition
Prospective Studies
Psychological
Quality Of Life
Risk Assessment
St. John's Home (Rochester
Stress
Terminal Care/methods/psychology/standards
Thirst
Withholding Treatment
Xerostomia/therapy
-
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
May 2017 List
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
Blended Foods For Tube-fed Children: A Safe And Realistic Option? A Rapid Review Of The Evidence
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Child; Clinical Research; Constipation; Human; Nervous System Diseases; Nutrition; Only Child; Safety
Creator
An entity primarily responsible for making the resource
Coad J; Toft A; Lapwood S; Manning J; Hunter M; Jenkins H; Sadlier J; Kennedy A; Murch S; Widdas D
Description
An account of the resource
With the growing number of children and young people with complex care needs or life-limiting conditions, alternative routes for nutrition have been established (such as gastrostomy feeding). The conditions of children and young people who require such feeding are diverse but could relate to problems with swallowing (dysphagia), digestive disorders or neurological/muscular disorders. However, the use of a blended diet as an alternative to prescribed formula feeds for children fed via a gastrostomy is a contentious issue for clinicians and researchers. From a rapid review of the literature, we identify that current evidence falls into three categories: (1) those who feel that the use of a blended diet is unsafe and substandard; (2) those who see benefits of such a diet as an alternative in particular circumstances (eg, to reduce constipation) and (3) those who see merit in the blended diet but are cautious to proclaim potential benefits due to the lack of clinical research. There may be some benefits to using blended diets, although concerns around safety, nutrition and practical issues remain.
Identifier
An unambiguous reference to the resource within a given context
http://dx.doi.org/10.1136/archdischild-2016-311030
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
Archives of Disease in Childhood
Child
Clinical Research
Coad J
Constipation
Human
Hunter M
Jenkins H
Kennedy A
Lapwood S
Manning J
May 2017 List
Murch S
Nervous System Diseases
Nutrition
Only Child
Sadlier J
Safety
Toft A
Widdas D