1
40
10
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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
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September 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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September List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231186173" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231186173</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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The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; female; human; male; palliative therapy; Medline; pediatrics; systematic review; review; attention; Cinahl; Only Child; child parent relation; Embase; PsycINFO; religion; data source; empiricism
Creator
An entity primarily responsible for making the resource
Engel M; Brouwer MA; Jansen N; Leget C; Teunissen SCCM; Kars MC
Description
An account of the resource
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. Aim: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163231186173" target="_blank" rel="noreferrer noopener">10.1177/02692163231186173</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Attention
Brouwer MA
Child
Child Parent Relation
Cinahl
data source
Embase
Empiricism
Engel M
Female
Human
Jansen N
Kars MC
Leget C
Male
Medline
Only Child
Palliative Medicine
Palliative Therapy
Pediatrics
Psycinfo
Religion
Review
September List 2034
Systematic Review
Teunissen SCCM
-
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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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
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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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
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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
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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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.21037/apm-22-525" target="_blank" rel="noreferrer noopener">10.21037/apm-22-525</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
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
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Title
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January 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
January 2020 List
URL Address
<a href="http://doi.org/10.1080/09638288.2018.1474496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/09638288.2018.1474496</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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Parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder: a scoping review
Publisher
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Disability & Rehabilitation
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; CINAHL Database; Cochrane Library; Decision Making; Embase; Emotions; Family; Human; Medline; Neuromuscular Diseases -- In Infancy and Childhood; Non-Drug; Parental Attitudes; Parents -- Psychosocial Factors; Physical Mobility; Physician's Role; Physiotherapy Evidence Database; Powered; Prescriptions; Psycinfo; Scoping Review; Walking; Wheelchairs
Creator
An entity primarily responsible for making the resource
Paguinto S G; Kasparian N A; Bray P; Farrar M
Description
An account of the resource
Purpose: To conduct a scoping review of the published evidence on parents' perceptions of power wheelchair prescription for children with a neuromuscular disorder and clinicians' influence on timely wheelchair implementation. Method: Nine electronic databases and reference lists of all retrieved full-text articles were searched up to March 2017. Eligibility criteria included (1) at least one child participant with a neuromuscular disorder, (2) power wheelchair as an intervention, and (3) qualitative, quantitative or mixed methods parent-reported outcomes related to power wheelchair equipment. Results: None of the 67 eligible studies examined parental perceptions of wheelchair prescription as a primary aim, and only 10 studies included children with a neuromuscular disorder. Parents reported their own emotional responses including grief and loss, emphasis on their child's walking and lack of accessibility as key barriers to power wheelchair prescription. Clinicians' perspectives on walking and powered mobility influenced parental decision-making regarding power wheelchair use for their child. Conclusion: Parents' experiences of initial wheelchair prescription have not been explored in existing literature. Clinicians' understanding of the benefits of power wheelchair equipment, particularly in the context of progression of neuromuscular disorders, is critical to facilitating timely wheelchair prescription with children. Condition-specific evidence is urgently needed to inform and support multidisciplinary management of children and their families. It is important that rehabilitation professionals recognize parental barriers to initial power wheelchair prescription, such as strong emotional responses, an emphasis on their child's walking and lack of access. Clinicians' perspectives on walking and powered mobility may influence parental decision-making regarding engagement in power wheelchair prescription and rehabilitation. It is critical that clinicians are aware of and actively educate families regarding the benefits of powered mobility to facilitate timely prescription and support physical and psychological adjustment.
Identifier
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<a href="http://doi.org/10.1080/09638288.2018.1474496" target="_blank" rel="noreferrer noopener">10.1080/09638288.2018.1474496</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
Bray P
Child
CINAHL Database
Cochrane Library
Decision Making
Disability & Rehabilitation
Embase
Emotions
Family
Farrar M
Human
January 2020 List
Kasparian N A
Medline
Neuromuscular Diseases -- In Infancy and Childhood
Non-Drug
Paguinto S G
Parental Attitudes
Parents -- Psychosocial Factors
Physical Mobility
Physician's Role
Physiotherapy Evidence Database
Powered
Prescriptions
Psycinfo
Scoping review
Walking
Wheelchairs
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.005</a>
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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Impact of Specialized Pediatric Palliative Care: A Systematic Review
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
2019
Subject
The topic of the resource
Medline; child; cohort analysis; female; human; male; palliative therapy; controlled study; pediatrics; outcome assessment; quality of life; systematic review; Palliative care; data extraction; Embase; review; synthesis; Web of Science; PsycINFO; risk assessment; consensus; clinical assessment; Cochrane Library; end of life; global health; patient reported outcome; patient-reported outcomes; randomized controlled trial (topic); selection bias
Creator
An entity primarily responsible for making the resource
Marcus K L; Santos G; Ciapponi A; Comande D; Bilodeau M; Wolfe J; Dussel V
Description
An account of the resource
CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes. METHOD(S): We performed a Systematic Review following Cochrane methods. DATA SOURCES: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018. STUDY SELECTION/DATA EXTRACTION: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria. RESULT(S): Twenty-four studies were included in qualitative synthesis: one non-randomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had >=1 area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life (QOL) scores in all four studies that assessed this outcome. No other outcome showed this consistency. CONCLUSION(S): Receiving SPPC was associated with better child QOL. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed. Copyright © 2019. Published by Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.005</a>
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).
2019
Bilodeau M
Child
Ciapponi A
clinical assessment
Cochrane Library
Cohort Analysis
Comandé D
Consensus
Controlled Study
data extraction
Dussel V
Embase
End Of Life
Female
Global Health
Human
Journal of Pain and Symptom Management
Male
Marcus K L
Medline
October 2019 List
outcome assessment
Palliative Care
Palliative Therapy
patient reported outcome
Patient-reported Outcomes
Pediatrics
Psycinfo
Quality Of Life
Randomized Controlled Trial (topic)
Review
Risk Assessment
Santos G
Selection Bias
synthesis
Systematic Review
Web of Science
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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/10.1089/jpm.2018.0335" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2018.0335</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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Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
children; death; Medline; article; child; female; human; male; palliative therapy; pediatric palliative care; systematic review; perception; Cinahl; data extraction; Embase; narrative; synthesis; Web of Science; PsycINFO; social care; health care system; life-shortening conditions
Creator
An entity primarily responsible for making the resource
Chong P H; Walshe C; Hughes S
Description
An account of the resource
Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective(s): To review empirical literature to construct an understanding of a "good death" for children with life-shortening conditions. Design(s): An integrative review approach was followed. This involved searching across Embase, Web of Science, Medline, CINAHL, and PsycINFO (no date limits set), as well as identifying eligible studies tracking reference lists. Appraisal of shortlisted articles in full text was performed, followed by data extraction, synthesis, and interpretation. Result(s): Analysis of articles (n = 24) yielded a dynamic and layered narrative about a good death that revolved around three themes. (1) Level of needs: includes both practical support and aspirational goals such as "do everything." (2) The composite experience: whether positive or negative adds to produce a sense of suffering. (3) Control (preservation and letting go): moving from maintaining status quo to acceptance of the child's death, the experience of which also contributes to suffering. Framed using a health care system perspective, a concept map that interprets a good death in children with life-shortening conditions is represented. Conclusion(s): A single yet holistic understanding of a good death experienced in the "real world" is suggested. Pediatric health and social care providers, and even policy makers, can use this new understanding to conceive alternative approaches to enhance support to dying children and their families. Copyright � 2019, Mary Ann Liebert, Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2018.0335" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0335</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Article
August 2019 List
Child
Children
Chong P H
Cinahl
data extraction
Death
Embase
Female
Health Care System
Hughes S
Human
Journal of Palliative Medicine
life-shortening conditions
Male
Medline
Narrative
Palliative Therapy
Pediatric Palliative Care
Perception
Psycinfo
Social Care
synthesis
Systematic Review
Walshe C
Web of Science
-
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
September 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
September 2019 List
URL Address
<a href="http://doi.org/10.1186/s13643-019-1059-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s13643-019-1059-8</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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Influence of health interventions on quality of life in seriously ill children at the end of life: A systematic review protocol
Publisher
An entity responsible for making the resource available
Systematic Reviews
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Medline; child; female; human; male; pain; quality control; systematic review; anxiety; pediatrics; quality of life; checklist; Cinahl; data extraction; Embase; meta analysis; narrative; publication; random sample; research priority; review; synthesis; Web of Science
Creator
An entity primarily responsible for making the resource
Piette VE; Cohen J; Deliens L; Pauwels N; Van Der Werff Ten Bosch J; Beernaert K
Description
An account of the resource
Background Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children. Methods A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols. Discussion As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s13643-019-1059-8" target="_blank" rel="noreferrer noopener">10.1186/s13643-019-1059-8</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
anxiety
Beernaert K
Checklist
Child
Cinahl
Cohen J
data extraction
Deliens L
Embase
Female
Human
Male
Medline
meta analysis
Narrative
Pain
Pauwels N
Pediatrics
Piette VE
publication
quality control
Quality Of Life
random sample
Research Priority
Review
September 2019 List
synthesis
Systematic Review
Systematic reviews
Van Der Werff Ten Bosch J
Web of Science
-
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
September 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
September 2019 List
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2019.1712" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamapediatrics.2019.1712</a>
Dublin Core
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Title
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Prevalence and Incidence of Anxiety and Depression among Children, Adolescents, and Young Adults with Life-Limiting Conditions: A Systematic Review and Meta-analysis
Publisher
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JAMA 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
Medline; adolescent; adult; article; child; female; human; male; systematic review; interview; human tissue; data extraction; Embase; meta analysis; synthesis; anxiety; depression; young adult; incidence; prevalence; monitoring; Organisation for Economic Co-operation and Development; psychologic assessment; PsycINFO; regression analysis
Creator
An entity primarily responsible for making the resource
Barker MM; Beresford B; Bland M; Fraser LK
Description
An account of the resource
IMPORTANCE: Children, adolescents, and young adults with life-limiting conditions experience various challenges that may make them more vulnerable to mental health problems, such as anxiety and depression. However, the prevalence and incidence of anxiety and depression among this population appears to be unknown. OBJECTIVE: To conduct a systematic review and meta-analysis to estimate the prevalence and/or incidence of anxiety and depression in children, adolescents, and young adults with life-limiting conditions. DATA SOURCES: Searches of MEDLINE (PubMed), PsycInfo, and Embase were conducted to identify studies published between January 2000 and January 2018. STUDY SELECTION: Studies were eligible for this review if they provided primary data of anxiety or depression prevalence and/or incidence, included participants aged 5 to 25 years with a life-limiting condition, were conducted in an Organisation for Economic Co-operation and Development country, and were available in English. DATA EXTRACTION AND SYNTHESIS: Random-effects meta-analyses were generated to provide anxiety and depression prevalence estimates. Meta-regression was conducted to analyze associations between study characteristics and each prevalence estimate. MAIN OUTCOMES AND MEASURES: Prevalence of anxiety and depression. RESULTS: A total of 14 866 nonduplicate articles were screened, of which 37 were included in the review. Of these, 19 studies reported anxiety prevalence, and 36 studies reported depression prevalence. The mean (range) age of participants was 15.4 (6-25) years. The meta-analysis of anxiety prevalence (n = 4547 participants) generated a pooled prevalence estimate of 19.1% (95% CI, 14.1%-24.6%). Meta-regression analysis found statistically significant differences in anxiety prevalence by assessment tool; diagnostic interviews were associated with higher anxiety prevalence (28.5% [95% CI, 13.2%-46.8%]) than self-reported or parent-reported measures (14.9% [95% CI, 10.9%-19.4%]). The depression meta-analysis (n = 5934 participants) found a pooled prevalence estimate of 14.3% (95% CI, 10.5%-18.6%). Meta-regression analysis revealed statistically significant differences in depression prevalence by the mean age of the sample (β = 0.02 [95% CI, 0.01-0.03]; P = .001). CONCLUSIONS AND RELEVANCE: In this systematic review and meta-analysis, the prevalence of anxiety and depression among children, adolescents, and young adults with life-limiting conditions was high, highlighting the need for increased psychological assessment and monitoring. Further research is required to determine the prevalence and incidence of anxiety and depression in a larger sample of children, adolescents, and young adults with a broader range of life-limiting conditions.
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2019.1712" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2019.1712</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
Adolescent
Adult
anxiety
Article
Barker MM
Beresford B
Bland M
Child
data extraction
Depression
Embase
Female
Fraser LK
Human
Human Tissue
Incidence
Interview
JAMA Pediatrics.
Male
Medline
meta analysis
Monitoring
Organisation for Economic Co-operation and Development
Prevalence
psychologic assessment
Psycinfo
Regression Analysis
September 2019 List
synthesis
Systematic Review
Young Adult
-
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
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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
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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
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Nissen S; Purssell E; Shaw K; Bailey C; Efstathiou N; Dunford C
Description
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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
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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
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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
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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
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
December 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
December 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0422" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1089/jpm.2017.0422</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
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Human; Child; Adult; Emotions; Professional-Patient Relations; Collaboration; Siblings; PubMed; Qualitative Studies; Embase; CINAHL Database; Thematic Analysis; Medline; Palliative Care -- In Infancy and Childhood; Systematic Review; Honesty; Life Expectancy -- In Infancy and Childhood; Patient Attitudes; Psycinfo
Creator
An entity primarily responsible for making the resource
Ekberg S; Yates P; Bradford Natalie K; Herbert A; Danby S
Description
An account of the resource
Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. Objective: To synthesize existing qualitative research exploring healthcare users' experiences of communicating with healthcare professionals about children with life-limiting conditions. Design: The results of a systematic literature search were screened independently by two reviewers. Raw data and analytic claims were extracted from included studies and were synthesized using thematic analysis methods for systematic reviews. Data Sources: MEDLINE, PubMed, CINAHL, Embase, PsycINFO, Scopus, Web of Science, ProQuest, and ScienceDirect were searched for articles published in English between 1990 and May 2017. Results: This review included 29 studies conducted across 11 countries and involving at least 979 healthcare users (adults [n?=?914], patients [n?=?25], and siblings [n?=?40]). The four domains of communication experience identified through thematic synthesis are: Information, Emotion, Collaboration, and Relationship. Although included studies were from a range of settings and diverse populations, further research is needed to explore whether and how domains of communication experience differ across settings and populations. In particular, further research about children's palliative care experiences is needed. Conclusions: Healthcare users typically value communication with healthcare professionals: that (1) is open and honest, (2) acknowledges emotion, (3) actively involves healthcare users, and (4) occurs within established and trusting relationships.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0422" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0422</a>
2018
Adult
Bradford Natalie K
Child
CINAHL Database
Collaboration
Danby S
December 2018 List
Ekberg S
Embase
Emotions
Herbert A
Honesty
Human
Journal of Palliative Medicine
Life Expectancy -- In Infancy and Childhood
Medline
Palliative Care -- In Infancy and Childhood
Patient Attitudes
Professional-patient Relations
Psycinfo
PubMed
Qualitative Studies
Siblings
Systematic Review
Thematic Analysis
Yates P