1
40
10
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Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NCC.0000000000000783</a>
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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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Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
Publisher
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; child; Decision Making; article; controlled study; female; human; male; palliative therapy; education; Only Child; risk factor; prospective study; multicenter study; decision making; propensity score; incurable cancer; risk perception
Creator
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Ye ZJ; Cheng MH; Zhang XY; Tang Y; Liang J; Sun Z; Liang MZ; Yu YL
Identifier
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<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000783</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).
2021
2023 SE3 - Oncology
Article
Cancer Nursing
Cheng MH
Child
Controlled Study
Decision Making
Education
Female
Human
incurable cancer
Liang J
Liang MZ
Male
Multicenter Study
Only Child
Palliative Therapy
Propensity Score
Prospective Study
risk factor
risk perception
Sun Z
Tang Y
Ye ZJ
Yu YL
Zhang XY
-
Dublin Core
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Title
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April 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1016/j.eclinm.2022.101287" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.eclinm.2022.101287</a>
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Title
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Which children and young people are at higher risk of severe disease and death after hospitalisation with SARS-CoV-2 infection in children and young people: A systematic review and individual patient meta-analysis
Publisher
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EClinicalMedicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Adolescent; Child; Chronic condition; Covid-19; Hospitalisation; Intensive care; Meta-analysis; Mortality; Risk factor; SARS-CoV-2; Severity; Systematic review
Creator
An entity primarily responsible for making the resource
Harwood R; Yan H; Talawila Da Camara N; Smith C; Ward J; Tudur-Smith C; Linney M; Clark M; Whittaker E; Saatci D; Davis PJ; Luyt K; Draper ES; Kenny SE; Fraser LK; Viner RM
Description
An account of the resource
BACKGROUND: We aimed to describe pre-existing factors associated with severe disease, primarily admission to critical care, and death secondary to SARS-CoV-2 infection in hospitalised children and young people (CYP), within a systematic review and individual patient meta-analysis. METHODS: We searched Pubmed, European PMC, Medline and Embase for case series and cohort studies published between 1st January 2020 and 21st May 2021 which included all CYP admitted to hospital with ≥ 30 CYP with SARS-CoV-2 or ≥ 5 CYP with PIMS-TS or MIS-C. Eligible studies contained (1) details of age, sex, ethnicity or co-morbidities, and (2) an outcome which included admission to critical care, mechanical invasive ventilation, cardiovascular support, or death. Studies reporting outcomes in more restricted groupings of co-morbidities were eligible for narrative review. We used random effects meta-analyses for aggregate study-level data and multilevel mixed effect models for IPD data to examine risk factors (age, sex, comorbidities) associated with admission to critical care and death. Data shown are odds ratios and 95% confidence intervals (CI).PROSPERO: CRD42021235338. FINDINGS: 83 studies were included, 57 (21,549 patients) in the meta-analysis (of which 22 provided IPD) and 26 in the narrative synthesis. Most studies had an element of bias in their design or reporting. Sex was not associated with critical care or death. Compared with CYP aged 1-4 years (reference group), infants (aged <1 year) had increased odds of admission to critical care (OR 1.63 (95% CI 1.40-1.90)) and death (OR 2.08 (1.57-2.86)). Odds of death were increased amongst CYP over 10 years (10-14 years OR 2.15 (1.54-2.98); >14 years OR 2.15 (1.61-2.88)).The number of comorbid conditions was associated with increased odds of admission to critical care and death for COVID-19 in a step-wise fashion. Compared with CYP without comorbidity, odds ratios for critical care admission were: 1.49 (1.45-1.53) for 1 comorbidity; 2.58 (2.41-2.75) for 2 comorbidities; 2.97 (2.04-4.32) for ≥3 comorbidities. Corresponding odds ratios for death were: 2.15 (1.98-2.34) for 1 comorbidity; 4.63 (4.54-4.74) for 2 comorbidities and 4.98 (3.78-6.65) for ≥3 comorbidities. Odds of admission to critical care were increased for all co-morbidities apart from asthma (0.92 (0.91-0.94)) and malignancy (0.85 (0.17-4.21)) with an increased odds of death in all co-morbidities considered apart from asthma. Neurological and cardiac comorbidities were associated with the greatest increase in odds of severe disease or death. Obesity increased the odds of severe disease and death independently of other comorbidities. IPD analysis demonstrated that, compared to children without co-morbidity, the risk difference of admission to critical care was increased in those with 1 comorbidity by 3.61% (1.87-5.36); 2 comorbidities by 9.26% (4.87-13.65); ≥3 comorbidities 10.83% (4.39-17.28), and for death: 1 comorbidity 1.50% (0.00-3.10); 2 comorbidities 4.40% (-0.10-8.80) and ≥3 co-morbidities 4.70 (0.50-8.90). INTERPRETATION: Hospitalised CYP at greatest vulnerability of severe disease or death with SARS-CoV-2 infection are infants, teenagers, those with cardiac or neurological conditions, or 2 or more comorbid conditions, and those who are obese. These groups should be considered higher priority for vaccination and for protective shielding when appropriate. Whilst odds ratios were high, the absolute increase in risk for most comorbidities was small compared to children without underlying conditions. FUNDING: RH is in receipt of a fellowship from Kidney Research UK (grant no. TF_010_20171124). JW is in receipt of a Medical Research Council Fellowship (Grant No. MR/R00160X/1). LF is in receipt of funding from Martin House Children's Hospice (there is no specific grant number for this). RV is in receipt of a grant from the National Institute of Health Research to support this work (grant no NIHR202322). Funders had no role in study design, data collection, analysis, decision to publish or preparation of the manuscript.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.eclinm.2022.101287" target="_blank" rel="noreferrer noopener">10.1016/j.eclinm.2022.101287</a>
2022
Adolescent
April 2022 List
Child
Chronic Condition
Clark M
COVID-19
Davis PJ
Draper ES
EClinicalMedicine
Fraser LK
Harwood R
Hospitalisation
Intensive Care
Kenny SE
Linney M
Luyt K
Meta-Analysis
Mortality
risk factor
Saatci D
SARS-CoV-2
severity
Smith C
Systematic Review
Talawila Da Camara N
Tudur-Smith C
Viner RM
Ward J
Whittaker E
Yan H
-
Dublin Core
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Title
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2020 Developing World List
Text
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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>
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).
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
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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April 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
April 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/672" target="_blank" rel="noreferrer noopener">https://pediatrics.aappublications.org/content/142/1_MeetingAbstract/672</a>
Dublin Core
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Title
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Compassion fatigue, burnout, and compassion satisfaction in pediatric palliative care (PC) providers in the U.S
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
awareness; burnout; child; Compassion fatigue; conference abstract; coworker; distress syndrome; education; exhaustion; friend; health care personnel; human; injury; life sustaining treatment; linear regression analysis; palliative therapy; prevalence; questionnaire; risk factor; satisfaction with care; self care; social isolation; wellbeing
Creator
An entity primarily responsible for making the resource
Kase S M; Waldman E D; Weintraub A S
Description
An account of the resource
Purpose: Compassion fatigue (CF) is emotional distress experienced by providers from ongoing contact with patients' suffering. Burnout (BO) is personal distress due to uncontrollable workplace factors that manifest in career dissatisfaction. CF and BO can each lead to emotional exhaustion, depression, frustration, depersonalization, and sense of loss in one's achievements; in healthcare providers, this can adversely affect patient care. Compassion satisfaction (CS) is professional fulfillment derived from caring for others. Pediatric palliative care (PC) providers are continuously exposed to clinical experiences that are physically and emotionally demanding and draining. Therefore, we aimed to determine the prevalence of CF, BO, and CS and identify potential predictors of these phenomena in pediatric PC providers.
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).
2018
April 2020 List
Awareness
Burnout
Child
Compassion Fatigue
conference abstract
coworker
Distress Syndrome
Education
Exhaustion
friend
Health Care Personnel
Human
injury
Kase S M
Life Sustaining Treatment
linear regression analysis
Palliative Therapy
Pediatrics
Prevalence
Questionnaire
risk factor
satisfaction with care
Self Care
Social Isolation
Waldman E D
Weintraub A S
Wellbeing
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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.2019.12.018" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.018</a>
Dublin Core
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Title
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Preparing for Good Grief: Grief and Loss in the Hospice and Palliative Context (P07)
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
bereavement support; child; complicated grief; conference abstract; exercise; hospice; human; learning; palliative therapy; professional practice; program development; risk factor; survivor; videorecording
Creator
An entity primarily responsible for making the resource
Remke S S; Shukraft A E; Supiano K P; Wladkowski S P
Description
An account of the resource
Objectives: * Describe state of current science and theory related to grief and bereavement. * Discuss variations of grief and strategies to support bereaved individuals. * Identify best practices to support healthy grief in hospice and palliative care contexts. * Identify special needs of unique populations across the lifespan (e.g., children, teens), persons with intellectual disabilities, those experiencing unexpected death of a family member or close friend, or those having complicated grief. * Identify program services and opportunities that utilize current best practices and knowledge within their own agency. Grief and bereavement are universal human experiences, and inevitable outcomes for those who lose a family member or close friend. For hospice and palliative care providers, understanding the complexities of this universal yet individualized experience, and providing support to the bereaved is a critical part of our field. This practical, interactive workshop will provide an overview of current theories, best practices, and approaches to support healthy grief and manage loss in a modern society. Through a variety of learning exercises, including discussion of field experience and current research, case studies, video exercises, and reflections, this presentation will discuss the complexities within the grief experience in hospice and palliative care. Phases of bereavement care needs, including the initial diagnosis, grieving through the disease process, becoming eligible for hospice services, support through the ongoing trajectory of grief, and facilitating access to community supports, will be discussed. Implications for hospice and palliative care inter-professional practice, program planning, and community advocacy will be provided. Special circumstances that challenge bereavement will be identified, including children, teens, survivors of traumatic loss, and risk factors for Prolonged Grief Disorder (PGD). Concerns that can particularly be addressed in the palliative context to support healthy grieving, and gaps in knowledge and services will also be highlighted.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.018</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).
2020
Bereavement Support
Child
Complicated Grief
conference abstract
Exercise
Hospice
Human
Journal of Pain and Symptom Management
Learning
March 2020 List
Palliative Therapy
Professional Practice
Program Development
Remke S S
risk factor
Shukraft A E
Supiano K P
survivor
videorecording
Wladkowski S 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
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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URL Address
<a href="http://doi.org/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejpn.2016.09.006</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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Effect of selective dorsal rhizotomy on daily care and comfort in non-walking children and adolescents with severe spasticity
Publisher
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European Journal of Paediatric Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
adolescent; risk factor; medical history; follow up; satisfaction; school child; comfort; cerebral palsy; congenital malformation; human; pain; child; controlled study; clinical article; attention; dystonia; dorsal rhizotomy; scoliosis; leg muscle; tone and motor problems; lipidoses; surgical intervention; selective dorsal rhizotomy; spasticity
Creator
An entity primarily responsible for making the resource
Buizer A I; van Schie P E M; Bolster E A M; van Ouwerkerk W J; Strijers R L; van de Pol L A; Stadhouder A; Becher J G; Vermeulen R J
Description
An account of the resource
Background In non-walking children with severe spasticity, daily care can be difficult and many patients suffer from pain. Selective dorsal rhizotomy (SDR) reduces spasticity in the legs, and therefore has the potential to improve daily care and comfort. Aim To examine effects of SDR on daily care and comfort in non-walking children with severe spasticity due to different underlying neurological conditions. Methods Medical history, changes in daily care and comfort and satisfaction with outcome were assessed retrospectively in non-walking children who underwent SDR in our center, with a mean follow-up of 1y 7m (range 11m-4y 3m). All eligible patients (n = 24, years 2009-2014) were included. Results Mean age at SDR was 12y 4m (SD 4y 3m, range 2y 8m-19y 3m). Associated orthopaedic problems were frequent. Seven patients underwent scoliosis correction in the same session. Most improvements were reported in dressing (n = 16), washing (n = 12) and comfort (n = 10). Median score for satisfaction was 7 on a scale of 10 (range 1-9). SDR resulted in reduction of spasticity in leg muscles. In nine patients dystonia was recorded post-operatively, mainly in children with congenital malformations and syndromes. Interpretation SDR is a single event intervention that can improve daily care and comfort in non-walking children with severe spasticity, and can safely be combined with scoliosis correction. Despite the improvements, satisfaction is variable. Careful attention is necessary for risk factors for dystonia, which may be unmasked after SDR. Copyright © 2016 European Paediatric Neurology Society
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2016.09.006</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
Adolescent
Attention
Becher J G
Bolster E A M
Buizer A I
Cerebral Palsy
Child
Clinical Article
Comfort
Congenital Malformation
Controlled Study
dorsal rhizotomy
Dystonia
European Journal of Paediatric Neurology
Follow Up
Human
leg muscle
lipidoses
Medical History
Pain
risk factor
Satisfaction
School Child
scoliosis
selective dorsal rhizotomy
Spasticity
Stadhouder A
Strijers R L
surgical intervention
tone and motor problems
van de Pol L A
van Ouwerkerk W J
van Schie P E M
Vermeulen R J
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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
May 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
May 2019 List
URL Address
<a href="http://doi.org/10.1080/17518423.2018.1461946" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/17518423.2018.1461946</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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Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities
Publisher
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Developmental Neurorehabilitation
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
human; terminal care; female; male; palliative therapy; emergency ward; major clinical study; resuscitation; article; adult; patient care; intensive care; health care access; priority journal; follow up; risk factor; physician attitude; personal experience; cross-sectional study; tracheostomy; disability; spinal muscular atrophy; Likert scale; clinical decision making; childhood disease/ep [Epidemiology]; neurologic disease/ep [Epidemiology]; noninvasive ventilation; patient comfort; pediatric rehabilitation; profound intellectual and multiple disability; rehabilitation center; risk; Swiss
Creator
An entity primarily responsible for making the resource
Wosinski B; Newman C J
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/17518423.2018.1461946" target="_blank" rel="noreferrer noopener">10.1080/17518423.2018.1461946</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).
Description
An account of the resource
Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations.
2019
Adult
Article
childhood disease/ep [Epidemiology]
Clinical Decision Making
Cross-sectional Study
Developmental Neurorehabilitation
Disability
Emergency Ward
Female
Follow Up
Health Care Access
Human
Intensive Care
Likert scale
Major Clinical Study
Male
May 2019 List
neurologic disease/ep [Epidemiology]
Newman C J
Noninvasive Ventilation
Palliative Therapy
Patient Care
Patient Comfort
Pediatric Rehabilitation
Personal Experience
Physician Attitude
Priority Journal
profound intellectual and multiple disability
rehabilitation center
Resuscitation
Risk
risk factor
Spinal Muscular Atrophy
Swiss
Terminal Care
Tracheostomy
Wosinski B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1177/1367493517732839" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1177/1367493517732839</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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Impaired mobility associated with an increased likelihood of death in children: A systematic review
Publisher
An entity responsible for making the resource available
Journal of child health care : for professionals working with children in the hospital and community
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Embase; palliative therapy; risk factor; systematic review; human; article; child; female; male; Medline; death; high income country; child health; Gross Motor Function Classification System; immobility; Cochrane Library; handicapped child; SciSearch
Creator
An entity primarily responsible for making the resource
Nissen S; Purssell E; Shaw K; Bailey C; Efstathiou N; Dunford C
Description
An account of the resource
Improved identification of children with an increased likelihood of death can support appropriate provision of integrated palliative care. This systematic review aims to consider immobility and the associated likelihood of death in children with disabilities, living in high-income countries. Two reviewers independently searched MEDLINE, Embase, Cochrane Library, OpenGrey and Science Citation Index (1990-2016) for studies that reported hazard ratios (HRs) and relative risk for the likelihood of death related to impaired mobility. Nine papers were included. Three studies reported functioning using the Gross Motor Function Classification Scale (GMFCS) and the remaining studies reported measures of functioning unique to the study. The strongest single prognostic factor for the likelihood of death was 'lack of sitting ability at 24 months', HR 44.4 (confidence interval (CI) 6.1-320.8) followed by GMFCS V HR 16.3 (CI 5.6-47.2) and 11.4 (CI 3.76-35.57) and 'not able to cruise by 24 months', HR 14.4 (CI 3.5-59.2). Immobility is associated with an increased risk of dying over study periods, but different referent groups make clinical interpretation challenging. Overall, the quality of evidence is moderate. The findings suggest that immobility can support identification of children who may benefit from integrated palliative care.
Identifier
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<a href="http://doi.org/10.1177/1367493517732839" target="_blank" rel="noreferrer noopener">10.1177/1367493517732839</a>
2018
Article
Bailey C
Child
Child Health
Cochrane Library
Death
Dunford C
Efstathiou N
Embase
Female
Gross Motor Function Classification System
Handicapped Child
high income country
Human
immobility
January 2019 List
Journal of child health care : for professionals working with children in the hospital and community
Male
Medline
Nissen S
Palliative Therapy
Purssell E
risk factor
SciSearch
Shaw K
Systematic Review
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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August 2018 List
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).
Text
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Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</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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The needs of parents during end-of-life care for terminally ill child
Publisher
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Palliative Medicine
Date
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2018
Subject
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terminal care; human; child; female; male; clinical article; death; palliative therapy; conference abstract; human tissue; identity; interview; data analysis; mother; risk factor; leukemia; terminally ill patient; solid malignant neoplasm; genetic transcription; grounded theory; qualitative research; genetic disorder; father; immune deficiency
Creator
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Polakova K; Loucka M
Description
An account of the resource
Research aim: The main aim was to describe the needs of parents caring for a terminally ill child during the course of the illness, the time of dying, and after the death of the child. Secondary aim was to identify the risk factors occurring during care provision. Study population: The study sample consisted of 9 parents of 8 children; seven mothers and two fathers. All participants lost their child due to a serious illness (solid tumour, leukaemia, genetic conditions, immunodeficiency syndrome, neurodegenerative condition). The child's age at their death varied from 2 months to 14 years. 6 children died in hospital, 2 at home. Study design: This was a qualitative study. The data collection was conducted by in-depth interviews with bereaved parents. Inclusion criteria was a death of a child due to a serious illness. Participants were recruited among bereaved parents via organisation for bereaved parents, by the snow ball method and self-selection method. Data analysis: Collected data were analysed by grounded theory techniques. All interviews were transcribed verbatim and analysed by open coding and axial coding. Results: Two categories based on key findings were identified: The preservation of one's identity of parent and the influence of the surroundings. The need to be with the child and the need to take care of the child were identified as the main needs of the bereaved parents. The influence of the surroundings is characterised by the support provided by the health professionals taking care of the child and the family. Issues identified by the parents included, among others, the issue of doctor-parent communication, the lack of psychological support, and the importance of support provided to parents after the child's death. The results of the study indicate the need for a complex approach to the family and the need of paediatric palliative care.
Identifier
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<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
August 2018 List
Child
Clinical Article
conference abstract
Data Analysis
Death
Father
Female
Genetic Disorder
genetic transcription
Grounded Theory
Human
Human Tissue
Identity
immune deficiency
Interview
Leukemia
Loucka M
Male
Mother
Palliative Medicine
Palliative Therapy
Polakova K
Qualitative Research
risk factor
solid malignant neoplasm
Terminal Care
terminally Ill Patient
-
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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February 2018 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 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pediatrneurol.2016.10.006" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pediatrneurol.2016.10.006</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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Cause of Death in Children With Mitochondrial Diseases
Publisher
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Pediatric Neurology
Date
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2017
Subject
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Age of Onset; cause of death; Child; Children; Female; Follow-Up Studies; Humans; Male; mitochondrial disease; Mitochondrial Diseases; Mitochondrial Diseases/ mortality; mortality; Only Child; Pediatric; Preschool; risk factor
Creator
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Eom S; Lee HN; Lee S; Kang HC; Lee JS; Kim HD; Lee YM
Description
An account of the resource
BACKGROUND: We investigated the clinical characteristics that represent risk factors for death in pediatric patients with mitochondrial diseases. METHODS: The medical records of mitochondrial disease pediatric patients attended between 2006 and 2015 (n = 221) were reviewed for clinical characteristics, diagnosis, hospitalization, follow-up, survival, and cause of death. RESULTS: The global mortality rate in the cohort was 14% (average age at death, six years). By syndromic diagnosis, the mortality rates were as follows: Leigh syndrome, 17% (15 of 88); mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes, 50% (two of four); and nonspecific mitochondrial disease, 11% (14 of 129). Data regarding 31 patients (17 males) were included in the analysis of cause of death. The age at symptom onset, lead time to diagnosis, duration of illness, and duration of life were 1.8 +/- 2.0, 1.7 +/- 1.5, 4.3 +/- 2.7, and 6.1 +/- 2.9 years, respectively. The most common causes of death were sepsis, pneumonia, disseminated intravascular coagulation, and sudden unexpected death (55%, 42%, 29%, and 29%, respectively). Early death (age six years or younger) was associated with lesions in the thalamus, number of organs involved, and Leigh syndrome. CONCLUSIONS: Careful monitoring of the medical condition and early intervention are key to improving survival in pediatric patients with mitochondrial disease.
Identifier
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<a href="http://doi.org/10.1016/j.pediatrneurol.2016.10.006" target="_blank" rel="noreferrer">10.1016/j.pediatrneurol.2016.10.006</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
Age of Onset
Cause Of Death
Child
Children
Eom S
February 2018 List
Female
Follow-up Studies
Humans
Kang HC
Kim HD
Lee HN
Lee JS
Lee S
Lee YM
Male
mitochondrial disease
Mitochondrial Diseases
Mitochondrial Diseases/ mortality
Mortality
Only Child
Pediatric
Pediatric Neurology
Preschool
risk factor