1
40
71
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Title
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August 2021 List
Text
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August 2021 List
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<a href="http://doi.org/10.1177/02692163211026523" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211026523</a>
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Title
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The impact of digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care: A systematic review and narrative synthesis
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Palliative Medicine
Date
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2021
Subject
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palliative care; systematic review; psychosocial outcomes; paediatric; Digital health interventions
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Archer S; Cheung NHY; Williams I; Darzi A
Description
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BACKGROUND: Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not improve, psychological wellbeing. However, the extent to which the psychological outcomes of digital health interventions are assessed is currently unknown. AIM: To identify and synthesise the literature exploring the impact of all digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care. DESIGN: Systematic review and narrative synthesis. DATA SOURCES: MEDLINE, EMBASE, Health Management Information Consortium, PsycINFO, Cumulative Index to Nursing and Allied Health Literature and the Midwives Information & Resource Service were searched on the 27th July 2020, in addition to the first five pages of Google Scholar. To be included in the review, papers must have contained: quantitative or qualitative data on psychosocial outcomes, data from patients aged 0-18 receiving palliative care or their families, a digital health intervention, and been written in English. RESULTS: Three studies were included in the review. All looked at the psychological impact of telehealth interventions. Papers demonstrated fair or good quality reporting but had small sample sizes and varied designs. CONCLUSIONS: Despite the design and development of digital health interventions that span the technological landscape, little research has assessed their psychosocial impact in the paediatric palliative care community. Whilst the evidence base around the role of these interventions continues to grow, their impact on children and their families must not be overlooked.
Identifier
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<a href="http://doi.org/10.1177/02692163211026523" target="_blank" rel="noreferrer noopener">10.1177/02692163211026523</a>
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2021
Archer S
August 2021 List
Cheung NHY
Darzi A
Digital health interventions
Paediatric
Palliative Care
Palliative Medicine
psychosocial outcomes
Systematic Review
Williams I
-
Dublin Core
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Title
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February 2022 List
Text
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February 2022 List
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<a href="http://doi.org/10.1177/02692163211049309" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163211049309</a>
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Title
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Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice
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Palliative Medicine
Date
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2021
Subject
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paediatrics; pain assessment; Pain measurement; palliative care; systematic review
Creator
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Chan AY; Ge M; Harrop E; Johnson M; Oulton K; Skene SS; Wong IC; Jamieson L; Howard RF; Liossi C
Description
An account of the resource
BACKGROUND: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. AIM: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. DESIGN: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. DATA SOURCES: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. RESULTS: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. CONCLUSION: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups.
Identifier
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<a href="http://doi.org/10.1177/02692163211049309" target="_blank" rel="noreferrer noopener">10.1177/02692163211049309</a>
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2021
Chan AY
February 2022 List
Ge M
Harrop E
Howard RF
Jamieson L
Johnson M
Liossi C
Oulton K
Paediatrics
Pain Assessment
Pain Measurement
Palliative Care
Palliative Medicine
Skene SS
Systematic Review
Wong IC
-
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Title
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August 2021 List
Text
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August 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2021-003019</a>
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Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis
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BMJ Supportive & Palliative Care
Date
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2021
Subject
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children; systematic review; life limiting conditions; paediatrics; fathers
Creator
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Fisher V; Fraser L; Taylor J
Description
An account of the resource
BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood. OBJECTIVES: To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition. METHODS: A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index. RESULTS: Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions. CONCLUSIONS: Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003019</a>
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2021
August 2021 List
BMJ Supportive & Palliative Care
Children
Fathers
Fisher V
Fraser L
life limiting conditions
Paediatrics
Systematic Review
Taylor J
-
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Title
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March 2021 List
Text
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March 2021 List
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<a href="http://doi.org/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0030222818819350</a>
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Title
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The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
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Omega: Journal of Death & Dying
Date
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2021
Subject
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Emotions; Psychology; Communication; Bereavement; Survivors; Conflict (Psychology); Human; Coping; Parenting; Grief; Social Work; Parents -- Psychosocial Factors; Systematic Review; Parental Role; Family Role; Science
Creator
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Haylett WJ; Scott Tilley D
Description
An account of the resource
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial role. An integrative review of literature of 20 studies across psychology, nursing, communications, social work, and family sciences was undertaken to determine the current state of science regarding bereaved parenting. Results revealed three influential contexts: the general context of parental grief and bereavement, described as traumatic and life-changing experiences; the personal context of the resulting parental changes and coping strategies; and the relational context of the subsequent parenting of surviving children, an experience characterized by periodic conflict between personal and children's needs, emotional fluctuations, challenges with levels of protectiveness and control, and a heightened sense of responsibility within the parental role. Discussion of results and implications for research are presented.
Identifier
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<a href="http://doi.org/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">10.1177/0030222818819350</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
Bereavement
Communication
Conflict (Psychology)
Coping
Emotions
Family Role
Grief
Haylett WJ
Human
March 2021 List
Omega: Journal Of Death & Dying
Parental Role
Parenting
Parents -- Psychosocial Factors
Psychology
Science
Scott Tilley D
Social Work
Survivors
Systematic Review
-
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Title
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February 2022 List
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February 2022 List
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<a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41390-021-01396-8</a>
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Title
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Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
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Pediatric Research
Date
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1120
Subject
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child; life-limiting condition; systematic review; Transition to adult care
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Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK
Description
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Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services.
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<a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a>
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1120
Child
February 2022 List
Flemming K
Fraser LK
Jarvis SW
Life-limiting Condition
Pediatric Research
Richardson G
Roberts D
Systematic Review
Transition To Adult Care
-
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Title
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March 2022 List
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March 2022 List
URL Address
<a href="http://doi.org/10.1001/jamapediatrics.2021.5767" target="_blank" rel="noreferrer noopener">http://doi.org/10.1001/jamapediatrics.2021.5767</a>
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Assessment of Long-term Psychological Outcomes after Pediatric Intensive Care Unit Admission: A Systematic Review and Meta-analysis
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JAMA Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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admission; Pediatric intensive care unit; PICU; psychological outcomes; Systematic Review
Creator
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Ko MSM; Poh PF; Heng KYC; Sultana R; Murphy B; Ng RWL; Lee JH
Description
An account of the resource
Importance: The pediatric intensive care unit (PICU) exposes children to stressful experiences with potential long-term psychological repercussions. However, current understanding of post-PICU psychological outcomes is incomplete. Objective(s): To systematically review and evaluate reported long-term psychological outcomes among children previously admitted to the PICU. Data Sources: A systematic search of the Cumulative Index to Nursing and Allied Health Literature, Embase, MEDLINE (PubMed), and PsycINFO was conducted from database inception to June 2021. Search terms included phrases related to intensive care (eg, intensive care units and critical care) and terms for psychological disorders (eg, posttraumatic stress disorder, depressive disorder, conduct disorder, and neurodevelopmental disorder) limited to the pediatric population. Study Selection: This systematic review and meta-analysis included randomized clinical trials and observational studies reporting psychological disorders among children younger than 18 years who were admitted to the PICU with follow-up for at least 3 months. Psychological disorders were defined using the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition). Children were excluded if they were admitted to the PICU for primary brain conditions (eg, traumatic brain injury, meningoencephalitis, and brain tumors) or discharged to the home for palliative care. Data Extraction and Synthesis: Titles and abstracts were independently screened by 2 reviewers, with data extraction conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guideline. Data were pooled using a random-effects model during meta-analysis. Main Outcomes and Measures: Age-corrected IQ scores and long-term psychological outcomes measured by scales such as the Child Behavior Checklist (higher scores indicate more behavioral problems) among children admitted to the PICU. Result(s): Of 9193 records identified, 31 independent studies (5 randomized clinical trials and 26 observational studies) involving 7786 children (mean age, 7.3 years [95% CI, 6.2-8.4 years]; 4267 boys [54.8%]; race and ethnicity were not reported by all studies) admitted to the PICU were included. Overall, 1 of 19 children (5.3%) to 14 of 16 children (88.0%) previously admitted to the PICU were reported to have at least 1 psychological disorder. Studies that examined posttraumatic stress disorder reported that 6 of 60 children (10.0%) to 31 of 102 children (30.4%) met the diagnostic criteria for the disorder at 3 to 6 months of follow-up. Compared with healthy children, those admitted to the PICU had lower IQ scores at 1 to 2 years of follow-up (mean, 89.40 points [95% CI, 88.33-90.47 points] vs 100.70 points [95% CI, 99.43-101.97 points]; P <.001) and 3 to 5 years of follow-up (mean, 88.54 points [95% CI, 83.92-93.16 points] vs 103.18 [95% CI, 100.36-105.99 points]; P <.001) and greater total emotional and behavioral problems at 4 years of follow-up (mean, 51.69 points [95% CI, 50.37-53.01 points] vs 46.66 points [95% CI, 45.20-48.13 points]; P <.001). Conclusions and Relevance: This systematic review and meta-analysis found a high burden of psychological sequelae among children previously admitted to the PICU, suggesting that risk stratification and early interventions are needed for high-risk groups.. Copyright © 2022 American Medical Association. All rights reserved.
Identifier
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<a href="http://doi.org/10.1001/jamapediatrics.2021.5767" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2021.5767</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
Admission
Heng KYC
JAMA Pediatrics
Ko MSM
Lee JH
March 2022 List
Murphy B
Ng RWL
Pediatric Intensive Care Unit
Picu
Poh PF
psychological outcomes
Sultana R
Systematic Review
-
Dublin Core
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Title
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April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1017/S1478951520001455" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951520001455</a>
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Title
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Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Adolescent; Child; Systematic review; Palliative care; impact; Young adult
Creator
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Lin SC; Huang MC; Yasmara D; Wuu HL
Description
An account of the resource
OBJECTIVE: To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions. METHOD(S): Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC. RESULT(S): Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths. SIGNIFICANCE OF RESULTS: Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.
Identifier
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<a href="http://doi.org/10.1017/S1478951520001455" target="_blank" rel="noreferrer noopener">10.1017/S1478951520001455</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
Adolescent
April 2021 List
Child
Huang MC
Impact
Lin SC
Palliative & Supportive Care
Palliative Care
Systematic Review
Wuu HL
Yasmara D
Young Adult
-
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Title
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March 2022 List
Text
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Citation List Month
March 2022 List
URL Address
<a href="http://doi.org/10.1590/1984-0462/2022/40/2021002" target="_blank" rel="noreferrer noopener">http://doi.org/10.1590/1984-0462/2022/40/2021002</a>
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Title
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Pediatric palliative care and end-of-life: a systematic review of economic health analyses
Publisher
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Revista Paulista de Pediatria
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Health economics; Hospice care; Palliative care; Pediatrics; Systematic review
Creator
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Lo DS; Hein N; Bulgareli JV
Description
An account of the resource
OBJECTIVE: To perform a systematic review of the health economic evidence on the care of children and adolescents with complex clinical conditions, comparing groups included and not included (control group) in palliative care at the end of life. DATA SOURCE: The seven databases searched were PubMed, Embase, Web of Science, Cochrane Library, Virtual Health Library-Latin American and Caribbean Health Sciences Literature (VHL-LILACS), EBSCOhost, and Paediatric Economic Database Evaluation, following recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement, from January 1979 to November 2020. The review included studies of patients under 18 years of age with complex clinical conditions that compared a palliative care group with a control group. The economic outcomes analyzed were length and place of stay at the end of life (home, hospice, ward, intensive care unit, emergency room), diagnostic and therapeutic procedures performed, and health-related costs. The exclusion criteria were: studies without a matched control group, conference/congress abstracts, letters to the editor, editorials, comments, qualitative studies, narrative reviews, studies with ten or fewer participants in each group, articles published in languages other than English, Portuguese, or Spanish. DATA SYNTHESIS: Out of the 518 articles identified, 4 met the inclusion criteria. We found evidence of direct economic benefits, such as reduced health costs, indirect savings, and protection of patients from undergoing invasive procedures, surgeries, and costly therapies, which cause greater suffering at the end of life. Therefore, participating in a palliative care program saved financial and technological resources, besides increasing the frequency of deaths at home and improving the quality of life. CONCLUSIONS: Public and private policies to promote palliative care represent better efficiency when allocating available health care resources.
Identifier
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<a href="http://doi.org/10.1590/1984-0462/2022/40/2021002" target="_blank" rel="noreferrer noopener">10.1590/1984-0462/2022/40/2021002</a>
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2022
Bulgareli JV
Health economics
Hein N
Hospice Care
Lo DS
March 2022 List
Palliative Care
Pediatrics
Revista Paulista de Pediatria
Systematic Review
-
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Title
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April 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2021 List
URL Address
<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2020-040386</a>
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Title
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Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
systematic review; hospice and palliative medicine; bereavement; father grief
Creator
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McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Description
An account of the resource
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
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<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</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
April 2021 List
Baker JN
Bereavement
Father Grief
hospice and palliative medicine
Kaye EC
McNeil MJ
Pediatrics
Rosenberg AR
Snyder I
Systematic Review
-
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September 2021 List
Text
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September 2021 List
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<a href="http://doi.org/10.2196/24967" target="_blank" rel="noreferrer noopener">http://doi.org/10.2196/24967</a>
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Effectiveness of virtual reality interventions for adolescent patients in hospital settings: Systematic review
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Journal of Medical Internet Research
Date
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2021
Subject
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adolescents; hospital; pain; anxiety; Systematic review; virtual reality
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Ridout B; Kelson J; Campbell A; Steinbeck K
Description
An account of the resource
Background: Given the high level of interest and increasing familiarity with virtual reality among adolescents, there is great potential to use virtual reality to address adolescents' unique health care delivery needs while in hospital. While there have been reviews on the use of virtual reality for specific health conditions and procedures, none to date have reviewed the full scope of virtual reality hospital interventions for adolescents who are often combined with children as a homogenous group, despite the fact that adolescents experience virtual environments different from children. Objective(s): The aim of this review was to systematically identify available evidence regarding the use of virtual reality interventions for adolescent patients in hospital settings to evaluate effectiveness, suitability, and safety and identify opportunities for future research. Method(s): PubMed, PsycINFO, Medline, and Scopus databases were searched using keywords and phrases. Retrieved abstracts (n=1525) were double screened, yielding 276 articles for full-text screening. Of these, 8 articles met inclusion criteria. Data were extracted to a standardized coding sheet, and a narrative synthesis was performed due to the heterogeneity of the studies. Result(s): Four RCTs and 4 single-case reports were identified for inclusion, all of which aimed to reduce pain or anxiety. The scenarios targeted were burn pain, venipuncture, chemotherapy, preoperative anxiety, and palliative care. Three out of 4 RCTs found significant reductions in pain or anxiety outcomes measures when using virtual reality compared to standard care or other distraction techniques; however, only 1 study combined self-reported experiences of pain or anxiety with any physiological measures. Single-case reports relied primarily upon qualitative feedback, with patients reporting reduced pain or anxiety and a preference for virtual reality to no virtual reality. Conclusion(s): Virtual reality can provide a safe and engaging way to reduce pain and anxiety in adolescents while in hospital, particularly when virtual reality software is highly immersive and specifically designed for therapeutic purposes. As VR becomes more accessible and affordable for use in hospitals, larger and more diverse studies that capitalize on adolescents' interest in and aptitude for virtual reality, and on the full range of capabilities of this emerging technology, are needed to build on these promising results. Copyright © 2021 Journal of Medical Internet Research. All rights reserved.
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<a href="http://doi.org/10.2196/24967" target="_blank" rel="noreferrer noopener">10.2196/24967</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
Adolescents
anxiety
Campbell A
Hospital
Journal Of Medical Internet Research
Kelson J
Pain
Ridout B
September 2021 List
Steinbeck K
Systematic Review
virtual reality
-
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Title
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February 2022 List
Text
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February 2022 List
URL Address
<a href="http://doi.org/10.1177/10499091211064202" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/10499091211064202</a>
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Pediatric End-of-Life Care in Rural America: A Systematic Review
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American Journal of Hospice and Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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systematic review; pediatric palliative care; pediatric end-of-life; pediatric hospice; rural health care; rural hospice
Creator
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Stone W; Keim-Malpass J; Cozad MJ; Fornehed MLC; Lindley LC
Description
An account of the resource
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.
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<a href="http://doi.org/10.1177/10499091211064202" target="_blank" rel="noreferrer noopener">10.1177/10499091211064202</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
American Journal of Hospice and Palliative Medicine
Cozad MJ
February 2022 List
Fornehed MLC
Keim-Malpass J
Lindley LC
pediatric end-of-life
pediatric hospice
Pediatric Palliative Care
rural health care
rural hospice
Stone W
Systematic Review
-
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Title
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June 2023 List
Text
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June 2022 List
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub</a>
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Title
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Are we on the same page? Exploring pediatric patients' involvement with advance care planning
Publisher
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Journal of Pain and Symptom Management
Date
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2023
Subject
The topic of the resource
cystic fibrosis; child; adult; female; human; male; caregiver; palliative therapy; neurology; outcome assessment; young adult; review; Medline; advance care planning; systematic review; emotion; randomized controlled trial (topic); acquired immune deficiency syndrome; adolescent; Advance Care Planning; patient participation; pediatric patient
Creator
An entity primarily responsible for making the resource
Aasen ERHV; oSovik ML; Stordal K; Lee 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).
Identifier
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<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">10.1016/j.jpainsymman.2023.04.003</a>
2023
Aasen ERHV
acquired immune deficiency syndrome
Adolescent
Adult
Advance Care Planning
Caregiver
Child
Cystic Fibrosis
Emotion
Female
Human
Journal of Pain and Symptom Management
June 2022 List
Lee A
Male
Medline
Neurology
oSovik ML
outcome assessment
Palliative Therapy
Patient Participation
pediatric patient
Randomized Controlled Trial (topic)
Review
Stordal K
Systematic Review
Young Adult
-
Dublin Core
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Title
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April 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April List 2023
URL Address
<a href="https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338" target="_blank" rel="noreferrer noopener">https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338 http://doi.org/</a>
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Title
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Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Publisher
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International Journal of Caring Sciences
Date
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2022
Subject
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Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Creator
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Anastasopoulou E; Dousis E
Description
An account of the resource
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></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
Anastasopoulou E
April List 2023
Attitude Of Health Personnel
Collaboration
Communication
Communities
Dousis E
Education
Evaluation
Health Services Accessibility
Hospitals
Human
International Journal of Caring Sciences
Multidisciplinary Care Team
Multimethod Studies
Palliative Care
Pediatric Care
Professional-family Relations
Professional-patient Relations
PubMed
Reward
Systematic Review
Terminal Care
-
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Title
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December 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2019 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2019-001909" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2019-001909</a>
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Title
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Artificial nutrition and hydration for children and young people towards end of life: consensus guidelines across four specialist paediatric palliative care centres
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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article; artificial feeding; child; clinical decision making; drug withdrawal; female; human; hydration; male; multidisciplinary team; palliative therapy; systematic review; terminal care
Creator
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Anderson AK; Burke K; Bendle L; Koh M; McCulloch R; Breen M
Description
An account of the resource
There is a paucity of evidence on the role, use, benefit and challenges of artificial nutrition and hydration (ANH) in children at end of life. Parents express the difficulty they face with making the decision to withdraw ANH. Decision-making on the role of ANH in an individual child requires careful multidisciplinary team deliberation and clear goals of care with children and families. Four paediatric palliative care specialist centres reviewed the current literature and developed consensus guidelines on ANH at end of life. These guidelines seek to provide a practical approach to clinical decision-making on the role of ANH in a child or young person entering the end-of-life phase.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2019-001909" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001909</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
Anderson AK
Article
Artificial Feeding
Bendle L
BMJ Supportive and Palliative Care
Breen M
Burke K
Child
Clinical Decision Making
December 2019 List
Drug Withdrawal
Female
Human
Hydration
Koh M
Male
McCulloch R
Multidisciplinary team
Palliative Therapy
Systematic Review
Terminal Care
-
Dublin Core
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Title
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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>
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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
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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
-
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Title
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February 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2023
URL Address
<a href="http://doi.org/10.1177/02692163221144084" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221144084</a>
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Title
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Understanding Parent Experiences of End-Of-Life Care for Children: A Systematic Review and Qualitative Evidence Synthesis
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
end-of-life care;Child; Palliative Care; Parents; qualitative research; systematic review
Creator
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Barrett L; Fraser L; Noyes J; Taylor J; Hackett J
Description
An account of the resource
BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. AIM: To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child. DESIGN: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. RESULTS: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. CONCLUSIONS: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life.
Identifier
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<a href="http://doi.org/10.1177/02692163221144084" target="_blank" rel="noreferrer noopener">10.1177/02692163221144084</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
Barrett L
Child
End-of-life Care
February List 2023
Fraser L
Hackett J
Noyes J
Palliative Care
Palliative Medicine
Parents
Qualitative Research
Systematic Review
Taylor J
-
Dublin Core
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Title
A name given to the resource
July 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
July 2019 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2019.02.029" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.pedn.2019.02.029</a>
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Title
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Parental Perspectives on Roles in End-of-Life Decision Making in the Pediatric Intensive Care Unit: An Integrative Review
Publisher
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Journal of Pediatric Nursing
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; Decision Making; Health Personnel; Human; Medline; Parental Attitudes; Parental Role; Professional Role; Psycinfo; PubMed; Systematic Review; United States; Intensive Care Units; Pediatric – United States; Terminal Care – In Infancy and Childhood
Creator
An entity primarily responsible for making the resource
Bennett Rachel A; LeBaron V T
Description
An account of the resource
Little is known about how parents perceive their role or the role of health care providers (HCPs) during end-of-life decision making (EOL DM) in the context of the pediatric intensive care unit (PICU). The authors searched CINAHL, PubMed, Ovid Medline, Web of Science, Social Science Database, PsycINFO, and Google scholar for English language studies performed in the United States related to parental perception of parental or HCP roles in EOL DM in the PICU since 2008. Eleven studies of parents and health care providers (HCPs) of critically ill children in the PICU and/or receiving inpatient pediatric palliative care, and bereaved parents of PICU patients. Most parents reported belief that EOL DM is within the domain of parental role, a minority felt it was a physician's responsibility. Parental EOL DM is rooted more firmly in emotion and perception and a desire to be a 'good parent' to a child at EOL in the way they see fit than HCP recommendations or 'medical facts'. Parents need HCPs to treat them as allies, communicate well, and be trustworthy. Role conflict may exist between parents and HCPs who are prioritizing different attributes of the parental role. The role of the nurse in support of parental role in the PICU is not well-elucidated in the extant literature. Future research should focus on what parents need from HCPs, especially nurses, to support their parental role, and factors that facilitate the development of trust and good communication. • Little is known about PICU parental role perception in end of life decision making. • Role alteration is a stressor with negative sequelae for parents in the PICU. • Majority of parents report decision making is a means of parental role fulfillment. • Health care professionals must be trustworthy allies who communicate well. • The role of the PICU nurse in supporting parental role is poorly explicated.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2019.02.029" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2019.02.029</a>
2019
Bennett Rachel A
Child
CINAHL Database
Decision Making
Health Personnel
Human
Intensive Care Units
Journal of Pediatric Nursing
July 2019 List
LeBaron V T
Medline
Parental Attitudes
Parental Role
Pediatric – United States
Professional Role
Psycinfo
PubMed
Systematic Review
Terminal Care – In Infancy and Childhood
United States
-
Dublin Core
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Title
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August 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
August 2022 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2022-003544" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2022-003544</a>
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Title
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Paediatric advance care planning in life-limiting conditions: Scoping review of parent experiences
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; pediatrics; female; male; comparative study; Cinahl; human; quality of life; systematic review; review; advance care planning; Medline; decision making; conversation; care behavior; participatory research; sense of coherence
Creator
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Bennett HE; Duke S; Richardson A
Description
An account of the resource
Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim(s): To understand parents' experience of advance care planning for a child or young person with a life-limiting condition. Design(s): Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability. Data sources: Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms. Result(s): 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment. Conclusion(s): Advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience. Copyright © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2022-003544" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2022-003544</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
Advance Care Planning
August 2022 List
Bennett HE
BMJ Supportive and Palliative Care
care behavior
Child
Cinahl
Comparative Study
Conversation
Decision Making
Duke S
Female
Human
Male
Medline
participatory research
Pediatrics
Quality Of Life
Review
Richardson A
sense of coherence
Systematic Review
-
Dublin Core
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Title
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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://journals.sagepub.com/doi/10.1177/02692163231163258">https://journals.sagepub.com/doi/10.1177/02692163231163258</a>
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Title
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Palliative care referral criteria and application in pediatric illness care: A scoping 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
Palliative Care; palliative care; Pediatrics; chronic disease; Referral and Consultation; systematic review; palliative medicine; referral and consultation
Creator
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Bernier Carney KM; Goodrich G; Lao A; Tan Z; Kiza AH; Cong X; Hinderer KA
Description
An account of the resource
BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelines or other clinical characteristics influence pediatric palliative care referral in research and practice. AIM: To evaluate the identification and application of palliative care referral criteria in pediatric illness care and research. DESIGN: A scoping review with a content analysis approach to summarize results. DATA SOURCES: Five electronic databases (PubMed, CINAHL, PsycINFO, SCOPUS, and Academic Search Premier) were used to identify peer-reviewed literature published in English between January 2010 and September 2021. RESULTS: We included 37 articles focused on the referral of pediatric patients to palliative care teams. The identified categories of referral criteria were: disease-related; symptom-related; treatment communication; psychosocial, emotional, and spiritual support; acute care needs; end-of-life care needs; care management needs; and self-referrals for pediatric palliative care services. We identified two validated instruments to facilitate palliative care referral and seven articles which described population-specific interventions to improve palliative care access. Nineteen articles implemented a retrospective health record review approach that consistently identified palliative care needs with varying rates of service use. CONCLUSIONS: The literature demonstrates inconsistent methods for identifying and referring children and adolescents with unmet palliative care needs. Prospective cohort studies and clinical trials would inform more consistent pediatric palliative care referral practices. More research is needed on palliative care referral and outcomes in community-focused pediatrics.
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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).
Identifier
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<a href="https://journals.sagepub.com/doi/10.1177/02692163231163258">10.1177/02692163231163258</a>
2023
Bernier Carney KM
Chronic Disease
Cong X
Goodrich G
Hinderer KA
June 2022 List
Kiza AH
Lao A
Palliative Care
Palliative Medicine
Pediatrics
Referral And Consultation
Systematic Review
Tan Z
-
Dublin Core
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Title
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April 2024 List
Text
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Citation List Month
April List 2024
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0322</a>
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Title
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How Do Children With Medical Complexity Die? A Scoping 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
2024
Subject
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Child; child; cohort analysis; human; chronic disease; quality of life; North America; systematic review; review; health care utilization; personal experience; Only Child; clinical practice; child death; qualitative research; knowledge gap; place of death; chronic patient; biological marker
Creator
An entity primarily responsible for making the resource
Chan Ng GM; Bourassa MH; Patel H
Description
An account of the resource
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0322</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2024
April List 2024
biological marker
Bourassa MH
Chan Ng GM
Child
Child Death
Chronic Disease
Chronic Patient
Clinical Practice
Cohort Analysis
Health Care Utilization
Human
Journal of Palliative Medicine
knowledge gap
North America
Only Child
Patel H
Personal Experience
Place Of Death
Qualitative Research
Quality Of Life
Review
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 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>
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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
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October 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2020 List
URL Address
<a href="http://doi.org/10.1111/jan.14509" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jan.14509</a>
Dublin Core
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Title
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A systematic review exploring palliative care for families who are forced migrants
Publisher
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Journal of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
children's palliative care; cultural humility; cultural sensitivity; forced migration; nursing; refugee; systematic review
Creator
An entity primarily responsible for making the resource
Clancy M; Taylor J; Bradbury-Jones C; Phillimore J
Description
An account of the resource
AIMS: To explore the palliative care experiences of forced migrant children, families, and healthcare professionals (HCPs) highlighting successes, challenges, and associated practice implications. DESIGN: Systematic literature review. DATA SOURCES: The following search engines were searched from 2008 - 2018: Allied and Complementary Medicine Database, Cumulative Index to Nursing and Allied Health, MEDLINE, Embase, ProQuest, Scopus, Psycinfo, and Web of Science. Extensive reference and citation checking were also conducted. REVIEW METHODS: Systematic review followed PRISMA guidelines with prepared PROSPERO registered protocol #CRD42019129200. English language qualitative, quantitative, or mixed methods studies were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Eighteen studies (reported in 20 articles) met the final inclusion criteria. Most focused on challenges to care provision. Thematic analysis following methods proposed by Braun and Clarke was undertaken. Five themes were identified: (a) divergence of beliefs and expectations; (b) communication; (c) navigating healthcare systems; (d) burdens and coping strategies; and (e) training and knowledge. A compassionate, collaborative approach with mutual respect crossed themes and was linked to high-quality care. CONCLUSION: Forced migrant families have multiple needs including physical and emotional support and help in navigating complex systems. Professional interpreters can ease communication barriers when resourced appropriately. Individualized care is crucial to addressing the intricate mosaic of culture such families present. A cultural sensitivity/insensitivity framework is presented that may help guide future interactions and priorities for those working in children's palliative care. IMPACT: This systematic review explored the international experiences of palliative care for forced migrant families. The findings highlight the plight of families who experience multiple traumas and increased levels of grief and loss through their migration experiences and when caring for a child with a life-limiting condition. This research has potential to have an impact on professionals working with culturally diverse families in all palliative care settings.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jan.14509" target="_blank" rel="noreferrer noopener">10.1111/jan.14509</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
Bradbury-Jones C
Children's Palliative Care
Clancy M
cultural humility
cultural sensitivity
forced migration
Journal Of Advanced Nursing
Nursing
October 2020 List
Phillimore J
refugee
Systematic Review
Taylor J
-
Dublin Core
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Title
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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="https://adc.bmj.com/content/104/Suppl_3/A321.1" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A321.1</a>
Dublin Core
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Title
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The agony of the child with complexity: Exploring the psychological impact on parents caring for children with complex healthcare needs
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Medline; child; female; human; male; qualitative research; conference abstract; caregiver; systematic review; meta analysis; publication; social support; depression; sample size; disease exacerbation; North America; health care need; Ireland; medical leave; mental stress; parental stress; prevention; psychological well-being; social isolation
Creator
An entity primarily responsible for making the resource
Crothers E; Bradbury M; Lewis S; O'Gorman C; Murphy A M
Description
An account of the resource
Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for children with complex healthcare needs across North America and Europe, and more specifically within Ireland. Method(s): A comprehensive search of the literature published within the last ten years was performed using PubMed and PyschINFO databases. Ten papers, consisting of qualitative studies and meta-analyses, which varied in sample size and methodology, were selected for detailed review. Result(s): Recent publications emphasise that caring for a child with complex care needs has a significant negative impact on the psychological wellbeing of parents. Several qualitative studies have shown that caregivers of children with life-limiting illness are up to twice as likely to report higher levels of parenting stress and depressive symptoms than parents of healthy children. The literature suggests that women experience greater parenting stress in caring for severely ill children than men, with one study noting an increase in maternal sick leave for psychological distress. However, women were more likely to report being the predominant caregiver, which could account for this discrepancy. Social isolation was a recurring factor contributing to the perceived burden of stress experienced by caregivers. Similar themes were evident across North America and Europe publications. We noted a paucity of research in the Irish context. Conclusion(s): Further research is needed to evaluate the psychological impact of caring for a child with complex healthcare needs and to guide management and prevention of parental stress and psychological illness, particularly in Ireland. Additional studies are needed to determine if increased social support reduces psychological stress and to investigate the effects of parental stress on disease progression in children with complex heathcare needs.
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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
Archives of Disease in Childhood
Bradbury M
Caregiver
Child
conference abstract
Crothers E
Depression
disease exacerbation
Female
health care need
Human
Ireland
Lewis S
Male
medical leave
Medline
Mental Stress
meta analysis
Murphy A M
North America
O'Gorman C
October 2019 List
Parental Stress
Prevention
Psychological Well-being
publication
Qualitative Research
Sample Size
Social Isolation
Social Support
Systematic Review
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0269216314556851" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216314556851</a>
<a href="http://pmj.sagepub.com/content/early/2014/11/12/0269216314556851" target="_blank" rel="noreferrer">http://pmj.sagepub.com/content/early/2014/11/12/0269216314556851</a>
Dublin Core
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Title
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Hospital-based bereavement services following the death of a child: A mixed study 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
2014
Subject
The topic of the resource
Child; bereavement; Death; systematic review; hospitals—pediatric
Creator
An entity primarily responsible for making the resource
Donovan LA; Wakefield CE; Russell V; Cohn RJ
Description
An account of the resource
Background: There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear. Aim: To identify services offered to bereaved families in perinatal, neonatal, and pediatric hospital settings and summarize the psychosocial impact of these services and published recommendations for best practice hospital-based bereavement care. Design: Systematic review of qualitative, quantitative, and mixed method studies guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and methodological quality appraised in accordance with the Mixed Method Appraisal Tool. Data sources: MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health, and PsychINFO were searched to find studies describing hospital-based bereavement services/interventions for parents, siblings, and grandparents. Results: In all, 14 qualitative, 6 quantitative, and 10 mixed method studies were identified. Nine descriptive articles were also included. Qualitatively, family members described feeling cared for and supported by staff, a reduction in sense of isolation, and improved coping and personal growth. Quantitatively, bereavement services have most effect for parents experiencing more complex mourning. It is recommended that bereavement services be theoretically driven and evidence based, offer continuity of care prior to and following the death of a child, and provide a range of interventions for the “whole family” and flexibility in service delivery. Conclusions: There is a role for transitional hospital-based services/interventions for families in the lead up to and following the death of a child. Further mixed method research is required to inform best practice bereavement care guidelines in the perinatal, neonatal, and pediatric hospital settings.
2014-11
Identifier
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<a href="http://doi.org/10.1177/0269216314556851" target="_blank" rel="noreferrer">10.1177/0269216314556851</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Bereavement
Child
Cohn RJ
Death
Donovan LA
hospitals—pediatric
Journal Article
Palliative Medicine
Russell V
Systematic Review
Wakefield CE
-
Dublin Core
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Title
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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
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Title
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Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
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
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
-
Dublin Core
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September 2023 List
Text
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September List 2023
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<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 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
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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
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<a href="http://doi.org/10.1177/02692163231186173" target="_blank" rel="noreferrer noopener">10.1177/02692163231186173</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
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
-
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Title
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February 2024 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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February List 2024
URL Address
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD014873.pub2</a>
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Title
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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Publisher
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Cochrane Database of Systematic Reviews
Date
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2023
Subject
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Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Creator
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France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Description
An account of the resource
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
Identifier
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<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
abdominal pain
Adolescent
Analgesia
Analgesics Opioid
Anthropology Cultural
Caes L
Child
Child Parent Relation
Chronic Pain
Cochrane Database of Systematic Reviews
Complex Regional Pain Syndrome
cultural anthropology
Disease Severity
endometriosis
ethnography
Family
Family Life
February List 2024
Fibromyalgia
Forbat L
France E
Headache
Health Care Personnel
Health Service
Human
Humans
inflammatory bowel disease
Jordan A
juvenile rheumatoid arthritis
migraine
musculoskeletal pain
narcotic analgesic agent
Noyes J
outcome assessment
Pain Assessment
Pain Severity
patient-reported outcome
pediatric patient
Peer Group
Personal Experience
Prognosis
Quality Of Life
racism
Review
Sibling
Silveira Bianchim M
Social Care
Social Isolation
Social Support
Social Work
Systematic Review
Thomson K
Turley R
Uny I
Wellbeing
-
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Title
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February 2024 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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February List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01326-x</a>
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The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
Publisher
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BMC Palliative Care
Date
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2023
Subject
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child; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Creator
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Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
Description
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Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Identifier
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<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adult
Article
Bluebond-Langner M
BMC Palliative Care
Chant K
Child
Controlled Study
Delphi Study
February List 2024
Gallagher K
Health Care Personnel
Human
Interview
Male
Mancini A
Marlow N
Newborn
Newborn Death
Newborn Intensive Care
Palliative Therapy
Perinatal Death
Systematic Review
Terminal Care
Therapy
Total Quality Management
-
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Title
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July 2022 List
Text
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July 2022 List
URL Address
<a href="http://doi.org/10.1016/j.ienj.2022.101173" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ienj.2022.101173</a>
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Parental support needs during pediatric resuscitation: A systematic review
Publisher
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International Emergency Nursing
Date
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2022
Subject
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Health services needs and demand; Parents; Pediatrics; Resuscitation; Social support; Systematic review
Creator
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Ghavi A; Hassankhani H; Powers K; Arshadi-Bostanabad M; Namdar-Areshtanab H; Heidarzadeh M
Description
An account of the resource
Background Resuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective. Method The PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents. Results There were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met. Conclusion Parents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.
Identifier
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<a href="http://doi.org/10.1016/j.ienj.2022.101173" target="_blank" rel="noreferrer noopener">10.1016/j.ienj.2022.101173</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
Arshadi-Bostanabad M
Ghavi A
Hassankhani H
Health Services Needs And Demand
Heidarzadeh M
International Emergency Nursing
July 2022 List
Namdar-Areshtanab H
Parents
Pediatrics
Powers K
Resuscitation
Social Support
Systematic Review
-
Dublin Core
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Title
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May 2019 List
Text
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May 2019 List
URL Address
<a href="http://doi.org/10.1017/S1478951518000172" target="_blank" rel="noreferrer noopener">http://doi.org/10.1017/S1478951518000172</a>
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Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adolescent; child; human; pain; female; male; palliative therapy; article; adult; qualitative research; caregiver; life; systematic review; pediatric palliative care; Cinahl; Medline; PsycINFO; pediatric patient; neoplasm; children's voice; language; Meta-summary; publication; voice
Creator
An entity primarily responsible for making the resource
Ghirotto L; Busani E; Salvati M; Di Marco V; Caldarelli V; Artioli G
Identifier
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<a href="http://doi.org/10.1017/S1478951518000172" target="_blank" rel="noreferrer noopener">10.1017/S1478951518000172</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
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. METHOD(S): A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.
2019
Adolescent
Adult
Article
Artioli G
Busani E
Caldarelli V
Caregiver
Child
children's voice
Cinahl
Di Marco V
Female
Ghirotto L
Human
Language
Life
Male
May 2019 List
Medline
Meta-summary
Neoplasm
Pain
Palliative & Supportive Care
Palliative Therapy
Pediatric Palliative Care
pediatric patient
Psycinfo
publication
Qualitative Research
Salvati M
Systematic Review
Voice
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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June 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2020 List
URL Address
<a href="http://doi.org/10.1177/0269216320907065" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216320907065</a>
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A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
caregivers; child; meta-analysis; pain management; palliative care; pediatrics; systematic review; terminal care
Creator
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Greenfield K; Holley S; Schoth D E; Harrop E; Howard R F; Bayliss J; Brook L; Jassal S S; Johnson M; Wong I; Liossi C
Description
An account of the resource
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. Aim(s): To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. Design(s): A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). Data sources: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. Result(s): A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views. Conclusion(s): There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective. Copyright © The Author(s) 2020.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216320907065" target="_blank" rel="noreferrer noopener">10.1177/0269216320907065</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Bayliss J
Brook L
Caregivers
Child
Greenfield K
Harrop E
Holley S
Howard R F
Jassal S S
Johnson M
June 2020 List
Liossi C
Meta-Analysis
Pain Management
Palliative Care
Palliative Medicine
Pediatrics
Schoth D E
Systematic Review
Terminal Care
Wong I
-
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 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
October 2018 List
URL Address
<a href="http://doi.org/10.1177/0009922818788307" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0009922818788307</a>
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Title
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A Systematic Review of Race/Ethnicity and Parental Treatment Decision-Making.
Publisher
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Clinical 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
Caregivers; Clinical; Databases; Decision Making; Ethnic Groups; Health Resource Utilization; Human; Parental Attitudes; Patient Compliance; Pediatrics; Physician Attitudes; Race Factors; Systematic Review; Terminally Ill Patients
Creator
An entity primarily responsible for making the resource
Harris VC; Links AR; Walsh J; Schoo DP; Lee AH; Tunkel DE; Boss EF
Description
An account of the resource
Patient race/ethnicity affects health care utilization, provider trust, and treatment choice. It is uncertain how these influences affect pediatric care. We performed a systematic review (PubMed, Scopus, Web of Science, PsycINFO, Cochrane, and Embase) for articles examining race/ethnicity and parental treatment decision-making, adhering to PRISMA methodology. A total of 9200 studies were identified, and 17 met inclusion criteria. Studies focused on treatment decisions concerning end-of-life care, human papillomavirus vaccination, urological surgery, medication regimens, and dental care. Findings were not uniform between studies; however, pooled results showed (1) racial/ethnic minorities tended to prefer more aggressive end-of-life care; (2) familial tradition of neonatal circumcision influenced the decision to circumcise; and (3) non-Hispanic Whites were less likely to pursue human papillomavirus vaccination but more likely to complete the vaccine series if initiated. The paucity of studies precluded overarching findings regarding the influence of race/ethnicity on parental treatment decisions. Further investigation may improve family-centered communication, parent engagement, and shared decision-making.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0009922818788307" target="_blank" rel="noreferrer noopener">10.1177/0009922818788307</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.
2018
Boss EF
Caregivers
Clinical
Clinical Pediatrics
Databases
Decision Making
Ethnic Groups
Harris VC
Health Resource Utilization
Human
Lee AH
Links AR
October 2018 List
Parental Attitudes
Patient Compliance
Pediatrics
Physician Attitudes
Race Factors
Schoo DP
September 2018 List
Systematic Review
Terminally Ill Patients
Tunkel DE
Walsh J
-
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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.
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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
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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
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 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
March 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jaac.2017.07.593" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jaac.2017.07.593</a>
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Title
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Posttraumatic growth in hospitalized children and adolescents
Publisher
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Journal Of The American Academy Of Child And Adolescent Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
hospitalized child; Attention; California; Child; childhood; Female; Human; injury; Male; Palliative therapy; psychiatrist; psychologist; Psychology; role stress; systematic review; wellbeing
Creator
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Ihle EC
Description
An account of the resource
Objectives: This presentation will describe the phenomenon of posttraumatic growth through a review of the literature on complex developmental trauma and salutogenesis. A description of a multidisciplinary approach to support posttraumatic growth (PTG) will also be presented. Methods: A review of the literature on adverse childhood events, complex developmental trauma,medical trauma in children, positive psychology, and PTG will be presented. This seminarwill thendescribe amultidisciplinary, collaborative approach [developed at University of California, San Francisco Benioff Children's Hospital (UCSF BCH)] to enhance well-being and support PTG. Results: There is much attention being paid to the role that complex developmental trauma and adverse childhood events (ACEs) play in determining the overall well-being of children and adolescents. One ACE that is particularly relevant to consultation-liaison (C/L) pediatric psychiatrists is the threat to bodily integrity; serious medical illness (and its treatment) is one such threat. ACEs have been associated with the maladaptive consequences of the stress response. However, it is important to highlight the auspicious role of stress in addition to its adaptive role (supporting survival). One positive aspect of stress is PTG where individuals gain strength and insight from crises. When medical trauma can be reframed as a stressor that promotes PTG, ACE is transformed from something pathogenic to an experience that is salutogenic. At UCSF BCH, a number of specialists play complementary roles in the effort to support salutogenesis. Our multidisciplinary, collaborative approach involves child and adolescent C/L psychiatrists, pediatric palliative care physicians, psychologists, and child life specialists in the effort to promote coping and enhance the emotional well-being of hospitalized patients. Conclusions: Medical trauma can be considered an ACE that challenges the resilience of both patients and their families. Interventions informed by the field of positive psychology can enhance resilience by supporting salutogenesis. Diverse disciplines can work collaboratively to support well-being and enhance PTG.
2017
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jaac.2017.07.593" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.593</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Attention
California
Child
childhood
Female
Hospitalized Child
Human
Ihle EC
injury
Journal Of The American Academy Of Child And Adolescent Psychiatry
Male
March 2018 List
Palliative Therapy
psychiatrist
Psychologist
Psychology
role stress
Systematic Review
Wellbeing
-
Dublin Core
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Title
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2023 Special Edition 5 - Low Resource Setting List
Text
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Citation List Month
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</a>
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Title
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Pediatric Palliative Care Program Implementation in Low- and Middle-income Countries: A Systematic Review Using a Strengths, Weaknesses, Opportunities and Threats Analysis
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; Palliative Care; human; palliative therapy; hospice; education; systematic review; human experiment; psychosocial care; conference abstract; multidisciplinary team; middle income country; government; lowest income group; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; resource limited setting
Creator
An entity primarily responsible for making the resource
Kenneson SA; Hughes-Visentin A; Doherty M; Kaye E; Wrigley J; Gujral P; Lodhi S; Phadke S; Rayala S; Gentica X; Malipeddi D; Sarvode S
Description
An account of the resource
Background/aims: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. <br/>Method(s): Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. <br/>Result(s): From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including 9 from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. (Table Presented) <br/>Conclusion(s): PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
Identifier
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<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
2023 SE5 - Low Resource Setting
Child
conference abstract
Doherty M
Education
Gentica X
government
Gujral P
Hospice
Hughes-Visentin A
Human
Human Experiment
Kaye E
Kenneson SA
Lodhi S
lowest income group
Malipeddi D
middle income country
Multidisciplinary team
Palliative Care
Palliative Medicine
Palliative Therapy
Phadke S
Preferred Reporting Items for Systematic Reviews and Meta-Analyses
psychosocial care
Rayala S
resource limited setting
Sarvode S
Systematic Review
Wrigley J
-
Dublin Core
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Title
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July 2023 List
Text
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July List 2023
URL Address
<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.phoj.2019.11.001</a>
Dublin Core
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Title
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Religious and cultural challenges in paediatrics palliative care: A review of literature
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
2019
Subject
The topic of the resource
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Creator
An entity primarily responsible for making the resource
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Description
An account of the resource
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Identifier
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<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</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
Abd Ghani NA
Autopsy
Caregiver
Coping Behavior
cultural anthropology
Data Base
Decision Making
Human
Interpersonal Communication
Journal Of Pediatric Hematology/oncology
July List 2023
Khalid K
Ku Md Saad S
Life
Mohamed Abdul Kadher AN
organ donor
Palliative Care
Palliative Therapy
Pediatrics
Religion
Review
Software
Systematic Review
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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December 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
December 2020 List
URL Address
<a href="http://doi.org/10.1186/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-0529-z</a>
Dublin Core
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Title
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When a child dies: a systematic review of well-defined parent-focused bereavement interventions and their alignment with grief- and loss theories
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Attitude to Death; Grief; Adaptation; Bereavement; Hospice Care/methods/psychology/standards; Humans; Interventions; Models theoretical; Paediatrics; Parenting/psychology; Parents; Parents/psychology; Psychological; Psychological Theory; Social Support; Systematic review
Creator
An entity primarily responsible for making the resource
Kochen EM; Jenken F; Boelen PA; Deben LMA; Fahner JC; van den Hoogen A; Teunissen SCCM; Geleijns K; Kars MC
Description
An account of the resource
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based are needed. The aim of this review is to provide an overview of well-defined bereavement interventions, focused on the parents, and delivered by regular health care professionals. Also, we explore the alignment between the interventions identified and the concepts contained in theories on grief in order to determine their theoretical evidence base. METHOD: A systematic review was conducted using the methods PALETTE and PRISMA. The search was conducted in MEDLINE, Embase, and CINAHL. We included articles containing well-defined, replicable, paediatric bereavement interventions, focused on the parent, and performed by regular health care professionals. We excluded interventions on pathological grief, or interventions performed by healthcare professionals specialised in bereavement care. Quality appraisal was evaluated using the risk of bias, adapted risk of bias, or COREQ. In order to facilitate the evaluation of any theoretical foundation, a synthesis of ten theories about grief and loss was developed showing five key concepts: anticipatory grief, working models or plans, appraisal processes, coping, and continuing bonds. RESULTS: Twenty-one articles were included, describing fifteen interventions. Five overarching components of intervention were identified covering the content of all interventions. These were: the acknowledgement of parenthood and the child's life; establishing keepsakes; follow-up contact; education and information, and; remembrance activities. The studies reported mainly on how to conduct, and experiences with, the interventions, but not on their effectiveness. Since most interventions lacked empirical evidence, they were evaluated against the key theoretical concepts which showed that all the components of intervention had a theoretical base. CONCLUSIONS: In the absence of empirical evidence supporting the effectiveness of most interventions, their alignment with theoretical components shows support for most interventions on a conceptual level. Parents should be presented with a range of interventions, covered by a variety of theoretical components, and aimed at supporting different needs. Bereavement interventions should focus more on the continuous process of the transition parents experience in readjusting to a new reality. TRIAL REGISTRATION: This systematic review was registered in Prospero (registration number: CRD42019119241).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-020-0529-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-0529-z</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Adaptation
Attitude To Death
Bereavement
BMC Palliative Care
Boelen PA
Deben LMA
December 2020 List
Fahner JC
Geleijns K
Grief
Hospice Care/methods/psychology/standards
Humans
Interventions
Jenken F
Kars MC
Kochen EM
Models Theoretical
Paediatrics
Parenting/psychology
Parents
Parents/psychology
Psychological
Psychological Theory
Social Support
Systematic Review
Teunissen SCCM
van den Hoogen A
-
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 2016 List
Dublin Core
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Title
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Children's Experiences Of Epilepsy: A Systematic Review Of Qualitative Studies
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Systematic Review; Epilepsy; Pediatrics; Qualitative Research; Children & Youth; Quality Of Life
Creator
An entity primarily responsible for making the resource
L Chong
Description
An account of the resource
CONTEXT:
Epilepsy is a common and severe neurologic disease associated with increased mortality, seizure-related injury, and adverse psychological and quality-of-life outcomes.
OBJECTIVE:
To describe the perspectives of children and adolescents with epilepsy.
DATA SOURCES:
Medline, Embase, PsycINFO, and CINAHL from inception to August 2015.
STUDY SELECTION:
Qualitative studies on children's experiences of epilepsy.
DATA EXTRACTION:
Results from primary studies. We used thematic synthesis to analyze the findings.
RESULTS:
Forty-three articles involving 951 participants aged 3 to 21 years across 21 countries were included. We identified 6 themes: loss of bodily control (being overtaken, susceptibility to physical harm, fragility of the brain, alertness to mortality, incapacitating fatigue), loss of privacy (declarative disease, humiliating involuntary function, unwanted special attention, social embarrassment of medicine-taking), inescapable inferiority and discrimination (vulnerability to prejudice, inability to achieve academically, consciousness of abnormality, parental shame, limiting social freedom), therapeutic burden and futility (unattainable closure, financial burden, overwhelming life disruption, exhaustion from trialing therapies, insurmountable side effects, awaiting a fabled remission), navigating health care (empowerment through information, valuing empathetic and responsive care, unexpected necessity of transition, fragmented and inconsistent care), and recontextualizing to regain normality (distinguishing disease from identity, taking ownership, gaining perspective and maturity, social and spiritual connectedness).
LIMITATIONS:
Non-English articles were excluded.
CONCLUSIONS:
Children with epilepsy experience vulnerability, disempowerment, and discrimination. Repeated treatment failure can raise doubt about the attainment of remission. Addressing stigma, future independence, and fear of death may improve the overall well-being of children with epilepsy.
Identifier
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doi: 10.1542/peds.2016-0658
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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).
2016
August 2016 List
Children & Youth
Epilepsy
L Chong
Pediatrics
Qualitative Research
Quality Of Life
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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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2019.08.005</a>
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Title
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Impact of Specialized Pediatric Palliative Care: A Systematic Review
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Medline; child; cohort analysis; female; human; male; palliative therapy; controlled study; pediatrics; outcome assessment; quality of life; systematic review; Palliative care; data extraction; Embase; review; synthesis; Web of Science; PsycINFO; risk assessment; consensus; clinical assessment; Cochrane Library; end of life; global health; patient reported outcome; patient-reported outcomes; randomized controlled trial (topic); selection bias
Creator
An entity primarily responsible for making the resource
Marcus K L; Santos G; Ciapponi A; Comande D; Bilodeau M; Wolfe J; Dussel V
Description
An account of the resource
CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes. METHOD(S): We performed a Systematic Review following Cochrane methods. DATA SOURCES: Medline, Embase, PsycINFO, Global Health, The Cochrane Central Register of Controlled Trials, LILACS, and Web of Science were searched from January 1996 to June 2018. STUDY SELECTION/DATA EXTRACTION: We included randomized controlled, cohort, case-control, and before-after studies in which exposure to SPPC services was the intervention of interest. All outcomes reported in these studies were included. Two investigators independently selected articles, extracted data, and assessed risk of bias of included studies using standardized criteria. RESULT(S): Twenty-four studies were included in qualitative synthesis: one non-randomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had >=1 area with high risk of bias, most commonly selection bias, low group comparability, risk for confounding, and inadequate statistical reporting. Studies analyzed 46 domains, operationalized as 136 distinct outcomes. SPPC was associated with better child quality of life (QOL) scores in all four studies that assessed this outcome. No other outcome showed this consistency. CONCLUSION(S): Receiving SPPC was associated with better child QOL. However, the paucity and low certainty of the evidence precluded any firm recommendations about SPPC practice. Larger collaborative networks and greater consensus regarding SPPC research standards are needed. Copyright © 2019. Published by Elsevier Inc.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.08.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.005</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Bilodeau M
Child
Ciapponi A
clinical assessment
Cochrane Library
Cohort Analysis
Comandé D
Consensus
Controlled Study
data extraction
Dussel V
Embase
End Of Life
Female
Global Health
Human
Journal of Pain and Symptom Management
Male
Marcus K L
Medline
October 2019 List
outcome assessment
Palliative Care
Palliative Therapy
patient reported outcome
Patient-reported Outcomes
Pediatrics
Psycinfo
Quality Of Life
Randomized Controlled Trial (topic)
Review
Risk Assessment
Santos G
Selection Bias
synthesis
Systematic Review
Web of Science
Wolfe J
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Dublin Core
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Title
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May 2020 List
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Citation List Month
May 2020 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
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Journal of Pain and Symptom Management
Date
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2020
Subject
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end of life; outcome assessment; Palliative care; patient-reported outcomes; pediatrics; systematic review
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Marcus K L; Santos G; Ciapponi A; Comandé D; Bilodeau M; Wolfe J; Dussel V
Description
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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 The objective of this study was to assess the effects of providing SPPC to seriously ill children on patient-, caregiver-, and systems-level outcomes. Methods 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. Results Twenty-four studies were included in qualitative synthesis: one nonrandomized controlled trial, 16 cohort studies, and seven before-after studies. Evidence certainty was low. Twenty-one studies had one or more 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 scores in all four studies that assessed this outcome. No other outcome showed this consistency. Conclusion Receiving SPPC was associated with better child quality of life. 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.
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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>
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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
Bilodeau M
Ciapponi A
Comandé D
Dussel V
End Of Life
Journal of Pain and Symptom Management
Marcus K L
May 2020 List
outcome assessment
Palliative Care
Patient-reported Outcomes
Pediatrics
Santos G
Systematic Review
Wolfe J