1
40
8
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Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1097/MPH.0000000000002564" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/MPH.0000000000002564</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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Effects of COVID-19 on Pediatric Cancer Care: A Multicenter Study of 11 Middle Eastern Countries
Publisher
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Journal of Pediatric Hematology/Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
childhood cancer; article; cancer chemotherapy; human; Middle East; cancer palliative therapy; health care access; low income country; middle income country; health care availability; social status; cancer center; coronavirus disease 2019; pandemic; telemedicine; cancer radiotherapy; cancer therapy; cancer surgery; pediatric oncologist; high income country; drug shortage; emergency surgery; granulocyte colony stimulating factor/pv [Special Situation for Pharmacovigilance]; prophylaxis; social distancing; therapy delay
Creator
An entity primarily responsible for making the resource
Elzembely MM; Al Rawas A; Al-Hebshi A; Alhadi A; Ibrahim AK; Zein AA; Ragab I; Alshamsi ET; Dammag E; Gachi F; Zain GH; Mohammad HS; Haddad H; Boudiaf H; Alharbi I; Sultan I; Salami KH; Bayoumy MS; Al-Mulla NA; Al Mashaikhi N; Almajali RM; Farah R; Al Daama SA; Ahmad S; Ragab SM; Fadel SH; Ahmed S; Al-Sweedan S; Abdelmabood S; Kaleem WK; Madney Y
Description
An account of the resource
During the COVID-19 pandemic, major challenges are facing pediatric cancer centers regarding access to cancer centers, continuity of the anti-cancer therapy, hospital admission, and infection protection precautions. Pediatric oncologists actively treating children with cancer from 29 cancer centers at 11 countries were asked to answer a survey from May 2020 to August 2020 either directly or through the internet. COVID-19 pandemic affected the access to pediatric cancer care in the form of difficulty in reaching the center in 22 (75.9%) centers and affection of patients'flow in 21 (72.4%) centers. Health care professionals (HCP) were infected with COVID-19 in 20 (69%) surveyed centers. Eighteen centers (62%) modified the treatment guidelines. Care of follow-up patients was provided in-hospital in 8(27.6%) centers, through telemedicine in 10 (34.5%) centers, and just delayed in 11 (38%) centers. Pediatric oncologists had different expectations about the future effects of COVID-19 on pediatric cancer care. Seventy-six percent of pediatric oncologists think the COVID-19 pandemic will increase the use of telemedicine. Fifty-five percent of pediatric oncologists think if the COVID-19 pandemic persists, we will need to change chemotherapy protocols to less myelosuppressive ones. Collaborative studies are required to prioritize pediatric cancer management during COVID-19 era.Copyright © 2023 Lippincott Williams and Wilkins. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/MPH.0000000000002564" target="_blank" rel="noreferrer noopener">10.1097/MPH.0000000000002564</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Abdelmabood S
Ahmad S
Ahmed S
Al Daama SA
Al Mashaikhi N
Al Rawas A
Al-Hebshi A
Al-Mulla NA
Al-Sweedan S
Alhadi A
Alharbi I
Almajali RM
Alshamsi ET
Article
Bayoumy MS
Boudiaf H
cancer center
Cancer Chemotherapy
Cancer Palliative Therapy
cancer radiotherapy
cancer surgery
Cancer Therapy
Childhood Cancer
coronavirus disease 2019
Dammag E
drug shortage
Elzembely MM
emergency surgery
Fadel SH
Farah R
Gachi F
granulocyte colony stimulating factor/pv [Special Situation for Pharmacovigilance]
Haddad H
Health Care Access
Health Care Availability
high income country
Human
Ibrahim AK
Journal Of Pediatric Hematology/oncology
Kaleem WK
low income country
Madney Y
Middle East
middle income country
Mohammad HS
Pandemic
pediatric oncologist
prophylaxis
Ragab I
Ragab SM
Salami KH
social distancing
social status
Sultan I
Telemedicine
therapy delay
Zain GH
Zein AA
-
Dublin Core
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Title
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December 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
December List 2022
URL Address
<a href="http://doi.org/10.21037/apm-22-525" target="_blank" rel="noreferrer noopener"> http://doi.org/10.21037/apm-22-525</a>
Dublin Core
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Title
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Pediatric Palliative Care through the Eyes of Healthcare Professionals, Parents and Communities: A Narrative Review
Publisher
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Annals of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Cinahl; Embase; Medical Subject Headings; Medline; Palliative care; PsycINFO; United States; article; attitudes; child; community sample; controlled study; developing country; eligibility; female; high income country; human; knowledge; male; narrative; palliative therapy; pediatric; systematic review; terminal care
Creator
An entity primarily responsible for making the resource
Saad R; Huijer HAS; Noureddine S; Sailian SD
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. The lack of knowledge and negative attitudes and beliefs toward pediatric palliative care are often cited among these barriers. This narrative review aims to summarize the existing literature regarding knowledge, attitudes and beliefs toward pediatric palliative care among healthcare professionals, parents and communities. METHOD(S): Four databases were searched: Medline, EMBASE, PsychINFO, and Cumulative Index to Nursing and Allied Health Literature Complete. The search strategy combined Medical Subject Headings, terms and keywords using Boolean operators to retrieve references addressing each concept of interest within the English literature. The initial search was conducted in August 2020 and updated in August 2021. No date limits were set. Two independent authors screened the retrieved papers for eligibility. KEY CONTENT AND FINDINGS: The majority of the 60 retrieved articles (n=49, 82%) were derived from high-income countries, with almost half of them from the United States. The references from developing countries were scattered across continents. The perspectives of healthcare professionals were more extensively explored compared to parents and community samples. Reports describe confusion between pediatric palliative care and end-of-life care. Yet, a positive attitude toward pediatric palliative care prevails whenever respondents possess accurate information about such care. CONCLUSION(S): This comprehensive review of different perspectives on pediatric palliative care helped in identifying the literature gaps and provided direction for future research in this area. The need to enhance accurate knowledge and promote understanding especially in developing countries was emphasized. This review also highlighted factors that influence knowledge, attitudes and beliefs toward pediatric palliative care, and identified the need for validated tools for research.
Identifier
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<a href="http://doi.org/10.21037/apm-22-525" target="_blank" rel="noreferrer noopener">10.21037/apm-22-525</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Annals of Palliative Medicine.
Article
Attitudes
Child
Cinahl
community sample
Controlled Study
December List 2022
developing country
eligibility
Embase
Female
high income country
Huijer HAS
Human
Knowledge
Male
Medical Subject Headings
Medline
Narrative
Noureddine S
Palliative Care
Palliative Therapy
Pediatric
Psycinfo
Saad R
Sailian SD
Systematic Review
Terminal Care
United States
-
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
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>
Dublin Core
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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
An unambiguous reference to the resource within a given context
<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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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.2019.12.077" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.12.077</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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Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
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; conference abstract; controlled study; convenience sample; demography; female; financial management; gender; health care personnel; high income country; human; male; neonatal intensive care unit; newborn; newborn death; palliative therapy; patient coding; pediatric intensive care unit; perception; prospective study; questionnaire; statistical significance; World Bank
Creator
An entity primarily responsible for making the resource
Grunauer M; Bustamante G; Zambrano K
Description
An account of the resource
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is important for the wellbeing and functioning of patients, families, and healthcare professionals (HCPs) and is part of the Integrated Model of Care (IMOC) in which ICU personnel address critical and palliative care (PC) needs concurrently. The Initiative for Pediatric Palliative Care (IPPC) guidelines can build PC capacity. Identifying existing PC resources/competencies amongst potential IPPC adopters maximizes implementation effectiveness. Research Objectives: We assessed if PICUs/NICUs implement GBS IPPC recommendations and if units' resources shape care provision.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.077</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
Bustamante G
Child
conference abstract
Controlled Study
Convenience Sample
Demography
Female
financial management
Gender
Grunauer M
Health Care Personnel
high income country
Human
Journal of Pain and Symptom Management
Male
March 2020 List
Neonatal Intensive Care Unit
Newborn
Newborn Death
Palliative Therapy
patient coding
Pediatric Intensive Care Unit
Perception
Prospective Study
Questionnaire
Statistical Significance
World Bank
Zambrano K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-019-1569-5</a>
Dublin Core
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Title
A name given to the resource
Decision-making at the limit of viability: The Austrian neonatal choice context
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
article; human; palliative therapy; controlled study; shared decision making; systematic review; nervous system malformation; newborn; statistics; Austria; Choice context; Communication strategies; Decision-making; ethicist; framing bias; head; high income country; Limit of viability; neonatologist; neonatology; Neonatology; nicu; pregnancy; prematurity; semi structured interview
Creator
An entity primarily responsible for making the resource
Stanak M; Hawlik K
Description
An account of the resource
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes. Method(s): A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria. Result(s): Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases. Conclusion(s): Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants. Copyright � 2019 The Author(s).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12887-019-1569-5" target="_blank" rel="noreferrer noopener">10.1186/s12887-019-1569-5</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
Article
August 2019 List
Austria
Bmc Pediatrics
Choice context
Communication strategies
Controlled Study
Decision-making
ethicist
framing bias
Hawlik K
head
high income country
Human
Limit of viability
Neonatologist
Neonatology
nervous system malformation
Newborn
Nicu
Palliative Therapy
Pregnancy
Prematurity
Semi Structured Interview
shared decision making
Stanak M
Statistics
Systematic Review
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2018 Developing World List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1089/jpm.2017.0626</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pharmacological Management of Symptoms in Children with Life-Limiting Conditions at the End of Life in the Asia Pacific
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
dying; pain; Asia; pediatrics; palliative therapy; dyspnea; health care access; seizure; human; article; child; terminal care; nausea; high income country; analgesic agent/pd [Pharmacology]; analgesic agent/po [Oral Drug Administration]; life; pharmacognosy; symptom; drug bioavailability; online analysis; restlessness; sputum
Creator
An entity primarily responsible for making the resource
Chong LA; Chong P H; Chee J
Identifier
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<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0626</a>
2018
analgesic agent/pd [Pharmacology]
analgesic agent/po [Oral Drug Administration]
Article
Asia
Chee J
Child
Chong LA
Chong P H
Developing World 2018 List
drug bioavailability
Dying
Dyspnea
Health Care Access
high income country
Human
Journal of Palliative Medicine
Life
Nausea
online analysis
Pain
Palliative Therapy
Pediatrics
pharmacognosy
restlessness
Seizure
sputum
Symptom
Terminal Care
-
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
A name given to the resource
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
An unambiguous reference to the resource within a given context
<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
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/10.1007/s40271-018-0333-5" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1007/s40271-018-0333-5</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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Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes
Publisher
An entity responsible for making the resource available
Patient
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; PsycINFO; outcome assessment; health care personnel; Scopus; systematic review; precancer; human; article; child; female; male; palliative therapy; Cinahl; Medline; developing country; high income country; ScienceDirect
Creator
An entity primarily responsible for making the resource
Namisango E; Bristowe K; Allsop MJ; Murtagh FEM; Abas M; Higginson IJ; Downing J; Harding R
Description
An account of the resource
Background: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. Objective: This review aims to identify symptoms, concerns and outcomes that matter to children and young people ("young people") with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes. Method: This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies. Results: Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) "other" (n = 39), e.g., information access. Conclusion: Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child-family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s40271-018-0333-5" target="_blank" rel="noreferrer noopener">10.1007/s40271-018-0333-5</a>
2018
Abas M
Allsop MJ
Article
Bristowe K
Child
Cinahl
developing country
Downing J
Embase
Female
Harding R
Health Care Personnel
Higginson IJ
high income country
Human
January 2019 List
Male
Medline
Murtagh FEM
Namisango E
outcome assessment
Palliative Therapy
Patient
precancer
Psycinfo
ScienceDirect
Scopus
Systematic Review