1
40
44
-
Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30081</a>
Dublin Core
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Title
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Differences in palliative opportunities across diagnosis groups in children with cancer.
Publisher
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Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Infant Newborn; Child; Child Preschool; Palliative Care; Retrospective Studies; Adolescent; Infant; Quality of Life; Recurrence; Only Child; Terminal Care/psychology; Neoplasms/therapy; Leukemia; Clinical Trials Phase I as Topic; Lymphoma
Creator
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Ebelhar J; DeGroote NP; Massie AM; Labudde E; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
An account of the resource
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.
Identifier
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<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener">10.1002/pbc.30081</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 SE3 - Oncology
Adolescent
Allen KE
Brock KE
Castellino SM
Child
Child Preschool
Clinical Trials Phase I as Topic
DeGroote NP
Ebelhar J
Humans
Infant
Infant Newborn
Labudde E
Leukemia
Lymphoma
Massie AM
Neoplasms/therapy
Only Child
Palliative Care
Pediatric Blood and Cancer
Quality Of Life
Recurrence
Retrospective Studies
Terminal Care/psychology
Wasilewski-Masker K
-
Dublin Core
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Title
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July 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July List 2023
URL Address
<a href="http://doi.org/10.1093/mtp/miac003" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/mtp/miac003</a>
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Title
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Associations between Music Therapy, Pain and Heart Rate for Children Receiving Palliative Care
Publisher
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Music Therapy Perspectives
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 Preschool; Confidence Intervals; Convenience Sample; Descriptive Statistics; Female; Heart Rate; Human; In Infancy and Childhood; Infant; Infant Newborn; Male; Multimethod Studies; Music Therapy; Only Child; Pain; Palliative Care; Pediatric Care; Pretest-Posttest Design; Prevention and Control; Psychosocial Factors; Purposive Sample; Quality of Life; Scales; Summated Rating Scaling; Thematic Analysis; Therapy
Creator
An entity primarily responsible for making the resource
Delaney AM; Herbert AR; Bradford N; Bernard A
Description
An account of the resource
Abstract Music therapy (MT) is a widely used non-pharmacological intervention in pediatric health care, an integral part of pediatric palliative care (PPC). Yet, there is a lack of evidence of efficacy, and best practices are not well established. The nature and extent of physiologic impacts of MT in PPC have not previously been reported. This study explores how MT contributes to psycho-physiological changes in children receiving palliative care. We used a convergent mixed-methods feasibility study with a pre–post design. MT sessions were delivered to children (0–18 years), who were registered with a statewide Pediatric Palliative Care Service. Pre–post measures of pain and heart rate were collected using validated and objective measures and analyzed using mixed-model analysis. Analysis of 36 MT sessions demonstrated a statistically significant reduction in pain scores and heart rate after MT sessions. Post measures of pain measured with Face, Legs, Activity, Cry, Consolability scale (FLACC scale) scores were −1.57 (95% confidence interval [CI] −2.31 to −0.83) and by Likert pain scale −2.03 (95% CI −2.79 to −1.27). Heart rate reduced by a mean of −7.6 beats per minute (95% CI −10.74 to −3.37). Five parents participated in semi-structured interviews. Following thematic analysis, two major themes emerged: (1) MT has a positive impact on physiological symptoms and (2) MT enhances the opportunity to experience joy. Results demonstrate the feasibility of study components and may inform future research design for a larger study. This research contributes to the limited evidence about non-pharmacological interventions enhancing the quality of life for children receiving PPC.
Identifier
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<a href="http://doi.org/10.1093/mtp/miac003" target="_blank" rel="noreferrer noopener">10.1093/mtp/miac003</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
Bernard A
Bradford N
Child
Child Preschool
Confidence Intervals
Convenience Sample
Delaney AM
Descriptive Statistics
Female
Heart Rate
Herbert AR
Human
In Infancy and Childhood
Infant
Infant Newborn
July List 2023
Male
Multimethod Studies
Music Therapy
Music Therapy Perspectives
Only Child
Pain
Palliative Care
Pediatric Care
Pretest-Posttest Design
Prevention and Control
Psychosocial Factors
Purposive Sample
Quality Of Life
scales
Summated Rating Scaling
Thematic Analysis
Therapy
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
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="http://doi.org/10.1007/s00431-022-04683-6" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-022-04683-6</a>
Dublin Core
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Title
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The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Male; Female; Humans; Adolescent; Child; Child Preschool; Infant; Length of Stay; Retrospective Studies; Palliative Care; Terminal Care; Chronic Disease; Cohort Studies; Tertiary Care Centers; Paediatric palliative care; End of life; Palliative Care/methods; Health resources; Complex chronic conditions; Terminal Care/methods
Creator
An entity primarily responsible for making the resource
Nogueira A; Correia D; Loureiro M; Gomes B; Cancelinha C
Identifier
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<a href="http://doi.org/10.1007/s00431-022-04683-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04683-6</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
April List 2023
Cancelinha C
Child
Child Preschool
Chronic Disease
Cohort Studies
Complex Chronic Conditions
Correia D
End Of Life
European Journal of Pediatrics
Female
Gomes B
Health Resources
Humans
Infant
Length Of Stay
Loureiro M
Male
Nogueira A
paediatric palliative care
Palliative Care
Palliative Care/methods
Retrospective Studies
Terminal Care
Terminal Care/methods
Tertiary Care Centers
-
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="http://doi.org/10.1080/15265161.2023.2146408" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/15265161.2023.2146408</a>
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Title
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Disputes over Diagnosing Death: Is It Ethical to Test for Death by Neurologic Criteria over Parental Objection?
Publisher
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The American Journal of Bioethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Diagnosis; Female; Child Preschool; Ethics Medical; Intracranial Pressure; Parental Attitudes; Brain Death; Dissent and Disputes; Neurologic Examination; Consent; Ethical Issues; Resuscitation Cardiopulmonary
Creator
An entity primarily responsible for making the resource
Eisenberg LR
Description
An account of the resource
The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand perspective of patients through parental objection, trust between team and family promoted by testing for DNC, and empathy offered to parents of Maddie in their grief.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/15265161.2023.2146408" target="_blank" rel="noreferrer noopener">10.1080/15265161.2023.2146408</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
April List 2023
Brain Death
Child Preschool
Consent
Diagnosis
Dissent And Disputes
Eisenberg LR
ethical issues
Ethics Medical
Female
Intracranial Pressure
Neurologic Examination
Parental Attitudes
Resuscitation Cardiopulmonary
The American Journal Of Bioethics
-
Dublin Core
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Title
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2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12939-020-01252-x</a>
Dublin Core
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Title
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Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting
Publisher
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International Journal for Equity in Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Adult; Child Preschool; Cohort Studies; Female; Humans; Infant; Male; Qualitative Research; Prospective Studies; Family; Continuity of Patient Care; Hospitalization; Child Mortality; Social Support; Acute Disease; Caregivers; Health Facilities; Family Characteristics; Vulnerable Populations; Rural Population; Kenya/epidemiology; Agency; Child Health; Childhood acute illness; Delivery of Health Care/standards; Treatment-seeking; Vulnerability
Creator
An entity primarily responsible for making the resource
Zakayo SM; Njeru RW; Sanga G; Kimani MN; Charo A; Muraya K; Sarma H; Uddin MF; Berkley JA; Walson JL; Kelley M; Marsh V; Molyneux S
Description
An account of the resource
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice. METHOD: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches. RESULTS: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers. CONCLUSION: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener">10.1186/s12939-020-01252-x</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
2021 Special Edition 1 - Low Resource Settings
Acute Disease
Adult
agency
Berkley JA
Caregivers
Charo A
Child Health
Child Mortality
Child Preschool
Childhood acute illness
Cohort Studies
Continuity Of Patient Care
Delivery of Health Care/standards
Family
Family Characteristics
Female
Health Facilities
Hospitalization
Humans
Infant
International Journal for Equity in Health
Kelley M
Kenya/epidemiology
Kimani MN
Male
Marsh V
Molyneux S
Muraya K
Njeru RW
Prospective Studies
Qualitative Research
Rural Population
Sanga G
Sarma H
Social Support
Treatment-seeking
Uddin MF
VULNERABILITY
Vulnerable Populations
Walson JL
Zakayo SM
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s13524-019-00846-7</a>
Dublin Core
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Title
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The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa
Publisher
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Demography
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Parents/psychology; Middle Aged; Young Adult; Risk Factors; Child Mortality; Bereavement; Child mortality; Intimate partner violence; West and Central Africa; Africa Central; Africa Western; Intimate Partner Violence/statistics & numerical data; Marriage/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Weitzman A; Smith-Greenaway E
Description
An account of the resource
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13 West and Central African countries, we estimate multilevel discrete-time hazard models to determine how women's risk of intimate partner violence (IPV) varies with the death of children. We assess heterogeneity in this association across two surrounding circumstances: children's age at death and regional prevalence of child bereavement. Findings indicate that the risk of IPV initiation rises with the death of children under age 5-for whom women are most intensely responsible-but not with the death of older children. The effect of young child bereavement is most pronounced in regions where it is least prevalent among mothers-a finding not explained by concomitant regional variation in gender inequality, family norms, and infrastructural development. These findings highlight the importance of child mortality for family outcomes beyond fertility in the African context and demonstrate the prominent role of the broader mortality context in shaping these implications.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener">10.1007/s13524-019-00846-7</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adult
Africa Central
Africa Western
Bereavement
Child
Child Mortality
Child Preschool
Demography
Female
Humans
Infant
Infant Newborn
Intimate partner violence
Intimate Partner Violence/statistics & numerical data
Male
Marriage/statistics & numerical data
Middle Aged
Parents/psychology
Risk Factors
Smith-Greenaway E
Weitzman A
West and Central Africa
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1371/journal.pone.0236498" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1371/journal.pone.0236498</a>
Dublin Core
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Title
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Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean
Publisher
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PLoS One
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Young Adult; Developing Countries; Socioeconomic Factors; Latin America; Asia; Poverty; Cost of Illness; Global Health; Siblings; Caribbean Region; Mortality/trends; West Indies
Creator
An entity primarily responsible for making the resource
Smith-Greenaway E; Weitzman A
Description
An account of the resource
In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and mortality in lower-income countries, the level, timing, intensity, and circumstances surrounding sibling mortality are likely to follow patterns distinct from those in higher-income settings. Thus, in this study, we offer a descriptive overview of sibling death in 43 countries across sub-Saharan Africa, South and Southeast Asia, and Latin America and the Caribbean. Specifically, we analyze Demographic and Health Survey data from nationally representative samples of 352,930 15- to 34-year-old women, born between 1985 and 2003, to document experiences of sibling death before age 25. On average, roughly one-third of individuals report a deceased sibling in these countries; estimates reach 40-50% of respondents in multiple African countries, particularly those that have experienced conflict and war. Although some sibling deaths occurred before the focal respondent was born, most bereaved individuals recalled a death during their lifetime-often in late childhood/early adolescence. High proportions of bereaved respondents report multiple sibling deaths, highlighting the clustering of deaths within families. Even so, bereaved individuals tend to come from large families and thus frequently have a comparable number of surviving siblings as people who never experienced a sibling die. Together, the results offer a window into global inequality in childhood experiences, and they attest to the need for research that explores the implications of sibling mortality for young people in world regions where the experience is concentrated.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1371/journal.pone.0236498" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0236498</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
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adult
Asia
Caribbean Region
Child
Child Preschool
Cost Of Illness
Developing Countries
Female
Global Health
Humans
Infant
Infant Newborn
Latin America
Male
Middle Aged
Mortality/trends
PLoS One
Poverty
Siblings
Smith-Greenaway E
Socioeconomic Factors
Weitzman A
West Indies
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1016/j.arcped.2020.12.002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.arcped.2020.12.002</a>
Dublin Core
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Title
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Integrating a Palliative Approach into the Healthcare provided by the French-African Pediatric Oncology Group's Pilot Units. Insights from a 3-year Training Program
Publisher
An entity responsible for making the resource available
Archives de Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; Palliative care; Adolescent; Child Preschool; Humans; Infant; Infant Newborn; Pediatrics; France; Palliative Care; Pediatrics/education; International Cooperation; Pain Management; Training; Africa; Oncology; Patient Care Team; Education Medical Continuing/methods/organization & administration; French-speaking Africa; Medical Oncology/education
Creator
An entity primarily responsible for making the resource
Edan C; Yao AJJ; Hessissen L; Moreira C; Viallard ML; Poulain P; Calmanti S; Thinlot C; Aubier F; Doucot MS; Gagnepain-Lacheteau A; Patte C
Description
An account of the resource
Working alongside local stakeholders, members of the French-African Pediatric Oncology Group developed a 3-year program to train pediatric oncology teams from 15 French-speaking countries in Africa in using analgesics and providing palliative care. This program was rolled out in three phases: initial training, in situ assessment, and advanced training in selected topics. To access this program, multidisciplinary teams had to come up with a project to improve their existing palliative care and pain management practices, and commit themselves to implementing it. All the teams invited agreed to take part in the program, which explicitly broached a subject that is often avoided in oncology teaching. The first phase was rolled out in 2017, with 65 trainees from 19 units attending one of three sessions held in Dakar, Senegal, Abidjan, Cote d'Ivoire, and Rabat, Morocco. The subsequent assessment revealed that only half the teams had started to implement their projects. The advanced training phase was therefore adjusted accordingly. A collective training session held in Marseille was attended by 15 trainees from seven teams whose projects were already underway, while in situ mentoring was provided for six other teams, through French-African twinnings in four cases. The length and openness of the program meant that we were able to identify and share the units' diverse realities, and fine-tune their projects accordingly, as well as plan ways of continuing the training both locally and collectively. Copyright © 2020 French Society of Pediatrics
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.arcped.2020.12.002" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2020.12.002</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).
2021
2021 Special Edition 1 - Low Resource Settings
Adolescent
Africa
Archives de Pediatrie
Aubier F
Calmanti S
Child
Child Preschool
Doucot MS
Edan C
Education Medical Continuing/methods/organization & administration
France
French-speaking Africa
Gagnepain-Lacheteau A
Hessissen L
Humans
Infant
Infant Newborn
International Cooperation
Medical Oncology/education
Moreira C
Oncology
Pain Management
Palliative Care
Patient Care Team
Patte C
Pediatrics
Pediatrics/education
Poulain P
Thinlot C
Training
Viallard ML
Yao AJJ
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/tmi.13529</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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Coronavirus Disease-19 Deaths among Children and Adolescents in an Area of Northeast, Brazil: Why So Many?
Publisher
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Tropical Medicine and International Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
Child; Adolescent; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Comorbidity; Children; Intensive Care Units; Age Distribution; Adolescents; Hospitalization/statistics & numerical data; Brazil/epidemiology; Mortality; deaths; Covid-19; mortality; Deaths; adolescents; children; covid-19; COVID-19/mortality
Creator
An entity primarily responsible for making the resource
de Siqueira ALA; Cristina FVS; Lima SPR; Santana SV; Cristina FLD; Eduardo CL; Queiroz GR
Description
An account of the resource
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents <19 years of age in Sergipe reported by the health surveillance and mortality information systems of Sergipe's Health Secretary and hospital records. RESULTS: 37 deaths of children <19 years old were reported up to 30(th) September 2020, corresponding to 4.87 deaths for 100,000 population <19 years old. Most deaths occurred among infants (44.1/100,000), and this age group had the highest case fatality rate (15.3 %). Most children had comorbidities such as chronic neurological diseases (n=7; 19%) and prematurity (n=4; 11%). Most children who died (n=18; 49%) were not admitted to intensive care units (ICU). CONCLUSION: COVID-19 mortality in children and adolescents in Sergipe was higher than in other Brazilian states and in high-income countries. A large proportion of the deaths occurred among children with co-morbidities and a minority of children were admitted to ICU, reflecting the limited provision of such beds in the State. Newborns and infants are a high-risk group that must have priority in health public policy.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/tmi.13529" target="_blank" rel="noreferrer noopener">10.1111/tmi.13529</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
2021 Special Edition 1 - Low Resource Settings
Adolescent
Adolescents
Age Distribution
Brazil/epidemiology
Child
Child Preschool
Children
Comorbidity
COVID-19
COVID-19/mortality
Cristina FLD
Cristina FVS
de Siqueira ALA
deaths
Eduardo CL
Female
Hospitalization/statistics & numerical data
Humans
Infant
Infant Newborn
Intensive Care Units
Lima SPR
Male
Mortality
Queiroz GR
Santana SV
Tropical Medicine & International Health
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
May 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2021 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2021.27.1.10" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2021.27.1.10</a>
Dublin Core
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Title
A name given to the resource
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
Publisher
An entity responsible for making the resource available
International Journal of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Child; Child Preschool; Cross Infection/prevention & control; Cross-Sectional Studies; Drug Resistance Multiple; Female; Hospital Units; Humans; Hygiene; Infant; Infection Control/organization & administration; Inservice Training; Interviews as Topic; Male; Nursing Assessment; Paediatrics; Palliative care; Palliative Care; Parents; Patient Isolation; Patient Safety; Quality of Life; Social Participation; Stereotyping; Surveys and Questionnaires; Terminally Ill
Creator
An entity primarily responsible for making the resource
Schmidt P; Hartenstein-Pinter A; Hasan C; Stening K; Zernikow B; Wager J
Description
An account of the resource
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. AIM: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. METHODS: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. FINDINGS: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. CONCLUSION: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2021.27.1.10" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.10</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).
2021
Child
Child Preschool
Cross Infection/prevention & control
Cross-sectional Studies
Drug Resistance Multiple
Female
Hartenstein-Pinter A
Hasan C
Hospital Units
Humans
hygiene
Infant
Infection Control/organization & administration
Inservice Training
International Journal of Palliative Nursing
Interviews As Topic
Male
May 2021 List
Nursing Assessment
Paediatrics
Palliative Care
Parents
Patient Isolation
Patient Safety
Quality Of Life
Schmidt P
Social Participation
Stening K
Stereotyping
Surveys And Questionnaires
Terminally Ill
Wager J
Zernikow B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1111/j.1469-8749.1996.tb12114.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/j.1469-8749.1996.tb12114.x</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Sleep problems in children with Sanfilippo syndrome.
Publisher
An entity responsible for making the resource available
Developmental Medicine and Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Humans; Longitudinal Studies; Sleep Disorders/etiology; Questionnaires; Time Factors; Sleep Disorders/therapy; Child Preschool; Mucopolysaccharidosis III/classification; Mucopolysaccharidosis III/complications; child; female; male; sleep disturbance/disorders; MPS III; psychological intervention
Creator
An entity primarily responsible for making the resource
Colville G A; Watters J P; Yule W; Bax M
Description
An account of the resource
Sanfilippo syndrome is a rare degenerative disorder which has severe intellectual and behavioural sequelae, commonly including sleep problems. A parental questionnaire was used to gather information on the sleep patterns of 80 children with Sanfilippo syndrome (mean age 10 years 2 months). The majority were found to have sleep problems (78%). Many also exhibited other distressing and unusual night time behaviours (staying up all night, chewing the bedclothes or crying out suddenly), and a few laughed or sang. Such problems may have been more severe in those with Sanfilippo syndrome type B. In four of the families offered individually tailored behaviour-management advice there was immediate improvement, which was maintained at followup in two cases. These results demonstrate the usefulness of even such a minimal intervention, even in a very difficult population such as this.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1469-8749.1996.tb12114.x" target="_blank" rel="noreferrer noopener">10.1111/j.1469-8749.1996.tb12114.x</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
1996
Bax M
Child
Child Preschool
Colville G A
Developmental Medicine and Child Neurology
Female
Humans
Longitudinal Studies
Male
MPS III
Mucopolysaccharidosis III/classification
Mucopolysaccharidosis III/complications
psychological intervention
Questionnaires
Sleep Disorders/etiology
Sleep Disorders/therapy
sleep disturbance/disorders
Time Factors
Watters J P
Yule W
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s00431-011-1398-5" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00431-011-1398-5</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Health Services Needs and Demand; Palliative Care; adolescent; Child; Child Preschool; Communication; hospice care; Humans; Interviews as Topic; Needs Assessment; Parents/px [Psychology]; Professional-Patient Relations; Qualitative Research; Switzerland
Creator
An entity primarily responsible for making the resource
Inglin S; Hornung R; Bergstraesser E
Description
An account of the resource
The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were defined: (a) cancer, (b) neurological disorders, and (c) non-cancer/non-neurological conditions. Fifteen parents whose child had been treated in one of four children's hospitals and received palliative care or had died within the previous 2 years were interviewed. The main interview topics were: communication with professionals, need for support in care (at home or hospital), and bereavement support. Irrespective of the center of care, parents of children with diagnoses other than cancer reported a lack of support concerning practical issues of care and psychosocial aspects. Parents of children with cancer expressed difficulties related to coordination of care especially when care was provided at home. Bereaved parents emphasized their wish for bereavement support. Our findings demonstrate shortcomings in pediatric palliative care in Switzerland and outline basic needs of affected families including psychosocial support, coordination of care and bereavement support. Based on these findings we formulate some suggestions on how to initiate pediatric palliative care in a most efficient way and tailored to the needs of families in Switzerland.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-011-1398-5" target="_blank" rel="noreferrer">10.1007/s00431-011-1398-5</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2011
Adolescent
Bergstraesser E
Child
Child Preschool
Communication
European Journal of Pediatrics
Health Services Needs And Demand
Hornung R
Hospice Care
Humans
Inglin S
Interviews As Topic
January 2018 List
Needs Assessment
Palliative Care
Parents/px [psychology]
Professional-patient Relations
Qualitative Research
Switzerland
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s00520-008-0408-2" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00520-008-0408-2</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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Use of patient-controlled analgesia for pain control in dying children
Publisher
An entity responsible for making the resource available
Supportive Care In Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Analgesia Patient-Controlled; Analgesics Opioid/tu [Therapeutic Use]; Morphine/tu [Therapeutic Use]; Neoplasms/pp [Physiopathology]; Pain Intractable/dt [Drug Therapy]; 0 (Analgesics Opioid); 76I7G6D29C (Morphine); adolescent; Analgesics Opioid/ad [Administration & Dosage]; Child; Child Preschool; Female; Humans; Male; Morphine/ad [Administration & Dosage]; Pain Measurement; Palliative Care; retrospective studies; Terminal Care; Treatment Outcome
Creator
An entity primarily responsible for making the resource
Schiessl C; Gravou C; Zernikow B; Sittl R; Griessinger N
Description
An account of the resource
BACKGROUND: In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare. MATERIALS AND METHODS: Retrospective chart review over a 7-year period (Jan 1998-Jan 2005) of PCA treated children dying of cancer was used. RESULTS: Eight children were on PCA for a median duration of 9 days (range, 1 to 50). The daily median intravenous morphine equivalent dose referenced to body weight increased significantly when PCA was initiated and during the last week of life. In the last week of life, the median daily number of delivered and undelivered bolus requests ranged from 7.5-21 and 0-4.5, respectively. To meet children's individual needs, 39 PCA parametre changes on 22 opportunities were performed. Median daily mean pain scores remained low (range, 0-3; numerical rating scale 0-10) throughout the period. CONCLUSION: PCA proved an ideal, dependable and feasible mode of analgesic administration for the individual titration of dose to effect.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00520-008-0408-2" target="_blank" rel="noreferrer">10.1007/s00520-008-0408-2</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).
0 (analgesics Opioid)
2008
76I7G6D29C (Morphine)
Adolescent
Analgesia Patient-Controlled
Analgesics Opioid/ad [Administration & Dosage]
Analgesics Opioid/tu [Therapeutic Use]
Child
Child Preschool
Female
Gravou C
Griessinger N
Humans
January 2018 List
Male
Morphine/ad [Administration & Dosage]
Morphine/tu [Therapeutic Use]
Neoplasms/pp [Physiopathology]
Pain Intractable/dt [Drug Therapy]
Pain Measurement
Palliative Care
Retrospective Studies
Schiessl C
Sittl R
Supportive Care In Cancer
Terminal Care
Treatment Outcome
Zernikow B
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1097/mpg.0000000000001210" target="_blank" rel="noreferrer">http://doi.org/10.1097/mpg.0000000000001210</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Healthcare Utilization and Spending for Constipation in Children With Versus Without Complex Chronic Conditions
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Gastroenterology And Nutrition
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Health Care Costs; Multiple Chronic Conditions; Patient Acceptance of Health Care; adolescent; Ambulatory Care/ economics/utilization; Child; Child Preschool; Chronic disease; Constipation/economics/ therapy; Delivery of Health Care/ economics; Emergency Service Hospital/utilization; Female; Hospitalization/economics; Humans; infant; Male; Medicaid; Prevalence; retrospective studies; United States
Creator
An entity primarily responsible for making the resource
Stephens JR; Steiner MJ; DeJong N; Rodean J; Hall M; Richardson T; Berry JG
Description
An account of the resource
OBJECTIVES: The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex chronic conditions (CCCs). METHODS: Retrospective cohort study of 4.9 million children ages 1 to 17 years enrolled in Medicaid from 2009 to 2011 in 10 states in the Truven Marketscan Database. Constipation was identified using International Classification of Disease, 9th revision codes for constipation (564.0x), intestinal impaction (560.3x), or encopresis (307.7). Outpatient and inpatient utilization and spending for constipation were assessed. CCC status was identified using validated methodology. RESULTS: A total of 267,188 children (5.4%) were diagnosed with constipation. Total constipation spending was $79.5 million. Outpatient constipation spending was $66.8 million (84.1%) during 406,814 visits, mean spending $120/visit. Among children with constipation, 1363 (0.5%) received inpatient treatment, accounting for $12.2 million (15.4%) of constipation spending, mean spending $7815/hospitalization. Of children hospitalized for constipation, 552 (40.5%) did not have an outpatient visit for constipation before admission. Approximately 6.8% of children in the study had >/=1 CCC; these children accounted for 33.5% of total constipation spending, 70.3% of inpatient constipation spending, and 19.8% of emergency department constipation spending. Constipation prevalence was 11.0% for children with 1 CCC, 16.6% with 2 CCCs, and 27.1% with >/=3 CCCs. CONCLUSIONS: Although the majority of pediatric constipation treatment occurs in the outpatient setting, inpatient care accounts for a sizable percentage of spending. Children with CCCs have a higher prevalence of constipation and account for a disproportionate amount of constipation healthcare utilization and spending.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/mpg.0000000000001210" target="_blank" rel="noreferrer">10.1097/mpg.0000000000001210</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adolescent
Ambulatory Care/ economics/utilization
Berry JG
Child
Child Preschool
Chronic Disease
Constipation/economics/ therapy
DeJong N
Delivery of Health Care/ economics
Emergency Service Hospital/utilization
Female
Hall M
Health Care Costs
Hospitalization/economics
Humans
Infant
January 2018 List
Journal Of Pediatric Gastroenterology And Nutrition
Male
Medicaid
Multiple Chronic Conditions
Patient Acceptance of Health Care
Prevalence
Retrospective Studies
Richardson T
Rodean J
Steiner MJ
Stephens JR
United States
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pubmed/19824283" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pubmed/19824283</a>
Notes
<p>Siden, Harold<br />Tucker, Tara<br />Derman, Sarah<br />Cox, Kelly<br />Soon, Gordon S<br />Hartnett, Carol<br />Straatman, Lynn<br />Journal Article<br />United States<br />J Palliat Care. 2009 Autumn;25(3):213-7.</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Title
A name given to the resource
Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?
Publisher
An entity responsible for making the resource available
Journal Of Palliative Care
Subject
The topic of the resource
Child; Child Preschool; Enteral Nutrition/ Adverse Effects; Female; Humans; Infant; Male; Prognosis; Terminal Care/ Methods
Creator
An entity primarily responsible for making the resource
Siden H; Tucker T; Derman S; Cox K; Soon GS; Hartnett C; Straatman L
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.ncbi.nlm.nih.gov/pubmed/19824283" target="_blank" rel="noreferrer">19824283</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).
2009
Child
Child Preschool
Cox K
Derman S
Enteral Nutrition/ Adverse Effects
Female
Hartnett C
Humans
Infant
Journal Of Palliative Care
Male
Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?
Prognosis
Siden H
Soon GS
Straatman L
Terminal Care/ Methods
Tucker T
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="https://doi.org/10.1177/0883073812439345" target="_blank" rel="noreferrer">https://doi.org/10.1177/0883073812439345</a>
Notes
<p>1708-8283<br />Ho, Charles<br />Straatman, Lynn<br />Journal Article<br />United States<br />J Child Neurol. 2013 Jan;28(1):40-4. doi: 10.1177/0883073812439345. Epub 2012 Mar 23.</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Title
A name given to the resource
A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program
Publisher
An entity responsible for making the resource available
Journal Of Child Neurology
Subject
The topic of the resource
Pediatrics; Adolescent; Child; Child Preschool; Female; Humans; Infant; Male; Neuromuscular Diseases/ Mortality/ Nursing; Palliative Care/ Methods/ Utilization; Retrospective Studies; Terminal Care
Creator
An entity primarily responsible for making the resource
Ho C; Straatman L
Description
An account of the resource
Recent studies and consensus statements have expressed the need to involve palliative care services in the care of children with progressive neuromuscular diseases (PMD), yet there have been no reviews of the utilization of palliative care services by children who died on a palliative care program. We conducted a retrospective chart review of all children who had a PMD who died on a single-center palliative care program. Twenty cases were identified. Services utilized by these patients included respite care, transition services, pain and symptom management, and end-of-life care. Prominent symptoms in the last 24 hours of life included respiratory distress, pain, nausea/vomiting, and anxiety; however, symptom management was very good. Utilization of services differed depending on the disease trajectory, with respite playing a critical role in the care of children with PMD. Good symptom management can be achieved.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/0883073812439345" target="_blank" rel="noreferrer">10.1177/0883073812439345</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).
2012
A Review Of Pediatric Palliative Care Service Utilization In Children With A Progressive Neuromuscular Disease Who Died On A Palliative Care Program
Adolescent
Child
Child Preschool
Female
Ho C
Humans
Infant
Journal of Child Neurology
Male
Neuromuscular Diseases/ Mortality/ Nursing
Palliative Care/ Methods/ Utilization
Pediatrics
Retrospective Studies
Straatman L
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="https://doi.org/10.1089/jpm.2013.0110" target="_blank" rel="noreferrer">https://doi.org/10.1089/jpm.2013.0110</a>
Notes
<p>1557-7740<br />Chavoshi, Negar<br />Miller, Tanice<br />Siden, Harold<br />Journal Article<br />United States<br />J Palliat Med. 2013 Oct;16(10):1210-4. doi: 10.1089/jpm.2013.0110. Epub 2013 Sep 5.</p>
Dublin Core
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Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Title
A name given to the resource
Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases
Publisher
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Journal Of Palliative Medicine
Subject
The topic of the resource
Terminal Care; Adolescent; British Columbia; Child; Child Preschool; Female; Health Resources/ Utilization; Health Services Needs And Demand; Humans; Infant; Infant Newborn; Length Of Stay/statistics & Numerical Data; Male; Patient Discharge/statistics & Numerical Data; Young Adult
Creator
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Chavoshi N; Miller T; Siden H
Description
An account of the resource
BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the pediatric population in British Columbia, Canada. METHODS: Data from Vital Statistics British Columbia were obtained for the pediatric population that died between 2002/03 and 2006/07. Our sample included three age groups: less than 1 year (excluding sudden infant death syndrome cases), 1 to 19 years, and 20 to 24 years. Using data from the Medical Services Plan and Discharge Abstract Database, we calculated annual rates of resources utilized (number of discharges, number of days in hospital, and number of medical services used) for every pediatric death that was due to an LTD in our selected 5-year time frame. Place of death was also explored. RESULTS: During the fiscal year of death and the fiscal year prior to death, children/adolescents and young adults dying of a pediatric LTD respectively experienced 5.3 and 3.7 hospital discharges, spent 48 and 39 days in the hospital, and required approximately 222 and 230 medical services. Infants were discharged once on average, and required 21 medical services. CONCLUSIONS: Resource utilization was very high for all three age groups, demonstrating the intense need for care by children dying of disease. These findings call for the strengthening of palliative care services in the province.
Identifier
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<a href="https://doi.org/10.1089/jpm.2013.0110" target="_blank" rel="noreferrer"> 10.1089/jpm.2013.0110</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).
2013
Adolescent
British Columbia
Chavoshi N
Child
Child Preschool
Female
Health Resources/ Utilization
Health Services Needs And Demand
Humans
Infant
Infant Newborn
Journal of Palliative Medicine
Length Of Stay/statistics & Numerical Data
Male
Miller T
Patient Discharge/statistics & Numerical Data
Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases
Siden H
Terminal Care
Young Adult
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
Dublin Core
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Title
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Mortality trends for pediatric life-threatening conditions.
Publisher
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The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Pediatrics; Adolescent; British Columbia; Cause Of Death; Child; Child Mortality/trends; Child Preschool; Female; Hospice; Hospice Care/statistics & Numerical Data; Humans; Illness; Infant; Infant Newborn; Life-threatening Conditions; Male; Mortality; Palliative; Palliative Care/statistics & Numerical Data; Pediatric
Creator
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Chavoshi N; Miller T; Siden H
Description
An account of the resource
Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population (province) for individuals aged 0 to 18 years from 2002 to 2011. The provincial death rate was 2.30 per 10 000. The sample did not significantly vary with respect to sex and geographic distribution when compared to the population. Infants contributed to a significantly larger proportion of pediatric deaths in the population. Children referred to the hospice were more likely to be diagnosed with cancer and diseases of the nervous system. Only 15% of all pediatric deaths due to disease in the province were cared for by the hospice, calling for the strengthening of interdisciplinary palliative care programs.
Identifier
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<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">10.1177/1049909114524476</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).
2014
Adolescent
British Columbia
Cause Of Death
Chavoshi N
Child
Child Mortality/trends
Child Preschool
Female
Hospice
Hospice Care/statistics & Numerical Data
Humans
Illness
Infant
Infant Newborn
Life-threatening Conditions
Male
Miller T
Mortality
Palliative
Palliative Care/statistics & Numerical Data
Pediatric
Pediatrics
Siden H
The American Journal of Hospice & Palliative Care
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
Dublin Core
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Title
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Impact of research participation on parents of seriously ill children.
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
2014
Subject
The topic of the resource
Biomedical Research; Child Health Services; Adolescent; Adult; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Palliative Care; Parents/psychology; Severity Of Illness Index; Surveys And Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L
Description
An account of the resource
BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</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).
2014
Adolescent
Adult
Andrews GS
Biomedical Research
Cadell S
Charting the territory
Child
Child Health Services
Child Preschool
Feichtinger L
Female
Humans
Infant
Infant Newborn
Journal of Palliative Medicine
Male
Middle Aged
Palliative Care
Parents/psychology
Severity Of Illness Index
Siden H
Smit QT
Steele R
Surveys And Questionnaires
Young Adult
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
Dublin Core
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Title
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Characteristics of a pediatric hospice palliative care program over 15 years.
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
British Columbia/epidemiology; Child; Child Preschool; Cohort Studies; Demographics; Female; Hospice Care; Hospices/methods/trends; Humans; Life Threatening; Male; Palliative Care; Palliative Care/methods/trends; Patient Care Team/trends; Pediatrics/methods/trends; Retrospective Studies; Survival Rate/trends; Time Factors
Creator
An entity primarily responsible for making the resource
Siden H; Chavoshi N; Harvey B; Parker A; Miller T
Description
An account of the resource
OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS: A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS: The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%). CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric life-threatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served.
Identifier
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<a href="http://doi.org/10.1542/peds.2014-0381" target="_blank" rel="noreferrer">10.1542/peds.2014-0381</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).
2014
British Columbia/epidemiology
Chavoshi N
Child
Child Preschool
Cohort Studies
Demographics
Female
Harvey B
Hospice Care
Hospices/methods/trends
Humans
Life Threatening
Male
Miller T
Palliative Care
Palliative Care/methods/trends
Parker A
Patient Care Team/trends
Pediatrics
Pediatrics/methods/trends
Retrospective Studies
Siden H
Survival Rate/trends
Time Factors
-
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
Dublin Core
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Title
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An integrative approach to music therapy in pediatric palliative care.
Publisher
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Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Hospices; Music Therapy; Palliative Care; Adolescent; British Columbia; Child; Child Preschool; Female; Humans; Infant; Male; Program Development; Program Evaluation; Young Adult
Creator
An entity primarily responsible for making the resource
Clark BA; Siden H; Straatman L
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/25265742" target="_blank" rel="noreferrer">25265742</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).
2014
Adolescent
British Columbia
Child
Child Preschool
Clark BA
Female
Hospices
Humans
Infant
Journal Of Palliative Care
Male
Music Therapy
Palliative Care
Program Development
Program Evaluation
Siden H
Straatman L
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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
n/a
Dublin Core
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Title
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Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.
Publisher
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Journal Of Pediatric Oncology Nursing : Official Journal Of The Association Of Pediatric Oncology Nurses
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Color; Age Factors; Child; Child Preschool; Female; Humans; Infant; Inpatients/psychology; Male; Neoplasms/psychology; Oncology; Oncology Nursing/methods; Outpatients/psychology; Pain; Pain/diagnosis/psychology; Pain Measurement/methods; Pain Scale; Pediatric Nursing/methods; Preschool Children; Psychometrics/instrumentation; Self Report
Creator
An entity primarily responsible for making the resource
Mahon P; Holsti L; Siden H; Strahlendorf C; Turnham L; Giaschi D
Description
An account of the resource
Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale (RPS) was developed to provide individualized self-reported pain ratings for preschool-aged children. The psychometric properties of this scale have yet to be evaluated. To ensure validity, our first step was to compare RPS scores to a well-validated scale in older children who were able to self-report their pain. The purpose of this study was to assess the concurrent validity of the RPS in children aged 5 to 10 years as proof of principle. We compared ratings of 49 children's pain using the RPS with those on the Faces Pain Scale-Revised (FPS-R). Participants suffering from pain related to cancer and cancer treatment were recruited to complete both scales at 3 time points, during both inpatient and outpatient clinic visits. Pearson's r and Cohen's kappa were used to evaluate the level of association between the scales. The association between RPS and the
Identifier
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<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">10.1177/1043454214555197</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).
2014
Age Factors
Child
Child Preschool
Color
Female
Giaschi D
Holsti L
Humans
Infant
Inpatients/psychology
Journal Of Pediatric Oncology Nursing : Official Journal Of The Association Of Pediatric Oncology Nurses
Mahon P
Male
Neoplasms/psychology
Oncology
Oncology Nursing/methods
Outpatients/psychology
Pain
Pain Measurement/methods
Pain Scale
Pain/diagnosis/psychology
Pediatric Nursing/methods
Preschool Children
Psychometrics/instrumentation
Self Report
Siden H
Strahlendorf C
Turnham L
-
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 2017 List
URL Address
<a href="http://doi.org/10.1007/s00134-011-2357-3" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00134-011-2357-3</a>
Notes
<p>Devictor, Denis J<br />Latour, Jos M<br />EURYDICE II study group<br />Clement de Clety S<br />Detaille T<br />Martens F<br />Biarent D<br />De Jaejer A<br />Duval E<br />Novak M<br />Maria M<br />Boeuf B<br />Blanc T<br />Villediau F<br />Cantagrel S<br />Delaporte B<br />Baraton L<br />Brissaud O<br />Le Bouedec S<br />Michel F<br />Milesi C<br />Betremieux P<br />Cremer R<br />Mitanchez D<br />Guilbert J<br />Renolleau S<br />Devictor D<br />Michaux C<br />Hubert P<br />Gayot A<br />Desprez P<br />Dobrzynski M<br />Anani D<br />Wiebe B<br />Haun C<br />Reiter K<br />Bosk A<br />Kumpf M<br />Magner C<br />Bentsen G<br />Viera M<br />Pisarcikova M<br />Sagat T<br />Rey Galan C<br />Esteban E<br />Edberg KE<br />Otterstedt U<br />Berger T<br />de Hoog M<br />de Gast-Bakker DH<br />Markhorst DG<br />Fraser J<br />Gajraj M<br />Brier J<br />Peters M<br />Tasker R<br />Marii A<br />Dobrota L<br />Aronskind E<br />Nazarov V<br />Comment in: Intensive Care Med. 2011 Nov;37(11):1723-4; PMID: 21965098</p>
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Title
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Forgoing life support: how the decision is made in European pediatric intensive care units
Publisher
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Intensive Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Decision Making; Intensive Care Units Pediatric; Life Support Care; Withholding Treatment/sn [statistics & Numerical Data]; Child Preschool; Europe; Female; France; Health Care Surveys; Humans; Male; Prospective Studies; Surveys And Questionnaires; Terminal Care/td [trends]
Creator
An entity primarily responsible for making the resource
Devictor DJ; Latour JM
Description
An account of the resource
PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs). METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W) European countries, and 4 in Eastern/Central (E/C) Europe. Data were collected between November 2009 and April 2010 through a questionnaire. RESULTS: The decision to forgo life-sustaining treatment was made in 166 (40.6%) out of 409 deceased children (median 42.9%, France 38.2%, N/W European countries 60.0%, E/C European countries 0%; P < 0.001). In the E/C group, more patients died after cardiopulmonary resuscitation (CPR) failure than after forgoing life support (P < 0.001). In all PICUs, caregivers discussed the decision during a formal meeting, after which the medical staff made the final decision. The decision was often documented in the medical record (median 100%). The majority of the parents were informed of the final decision and were at the bedside during their child's death (median 100%). Decision to forgo life-sustaining treatment occurred in 40.6% of children, compared with 33% in Eurydice I. A high percentage of parents from France were now informed about the meeting and its conclusion as compared with Eurydice I (median 100%). CONCLUSIONS: The results of this study and comparison with the Eurydice I study (2002) show a trend towards standardization of end-of-life practices across N/W European countries and France in the past decade.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00134-011-2357-3" target="_blank" rel="noreferrer">10.1007/s00134-011-2357-3</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).
2011
Child Preschool
December 2017 List
Decision Making
Devictor DJ
Europe
Female
France
Health Care Surveys
Humans
Intensive Care Medicine
Intensive Care Units Pediatric
Latour JM
Life Support Care
Male
Prospective Studies
Surveys And Questionnaires
Terminal Care/td [trends]
Withholding Treatment/sn [statistics & Numerical Data]
-
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 2017 List
URL Address
<a href="http://doi.org/10.1111/jpc.13355" target="_blank" rel="noreferrer">http://doi.org/10.1111/jpc.13355</a>
Notes
<p>Isaacs, David</p>
Dublin Core
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Title
A name given to the resource
Hope and despair
Publisher
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Journal Of Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Hope; Stress Psychological; Child Preschool; Humans; Infant; Terminal Care
Creator
An entity primarily responsible for making the resource
Isaacs D
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jpc.13355" target="_blank" rel="noreferrer">10.1111/jpc.13355</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).
2016
Child Preschool
December 2017 List
Hope
Humans
Infant
Isaacs D
Journal Of Paediatrics & Child Health
Stress Psychological
Terminal Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
URL Address
<a href="http://www.pediatricnursing.org/article/S0882-5963(16)00054-3/fulltext" target="_blank" rel="noreferrer">http://www.pediatricnursing.org/article/S0882-5963(16)00054-3/fulltext</a>
Notes
<p>Ryan, Jane Greene<br />Haas, Krista<br />Kramer, Natalene<br />Vizzachero, Nora<br />Butler, Suzanne<br />Waechtler, Elen<br />S0882-5963(16)00054-3</p>
Dublin Core
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Title
A name given to the resource
When Technology Fails: Community-Based Pediatric Hospice
Publisher
An entity responsible for making the resource available
Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Health Care Reform; Hospice And Palliative Care Nursing/og [organization & Administration]; Hospice Care/og [organization & Administration]; Quality Assurance Health Care; Biomedical Technology; Child; Child Health Services/og [organization & Administration]; Child Preschool; Female; Hospices/og [organization & Administration]; Humans; Male; Pediatrics; Residence Characteristics; Risk Assessment; United States
Creator
An entity primarily responsible for making the resource
Ryan JG; Haas K; Kramer N; Vizzachero N; Butler S; Waechtler E
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1016/j.pedn.2016.02.008" target="_blank" rel="noreferrer">10.1016/j.pedn.2016.02.008</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).
2016
Biomedical Technology
Butler S
Child
Child Health Services/og [organization & Administration]
Child Preschool
Female
Haas K
Health Care Reform
Hospice And Palliative Care Nursing/og [organization & Administration]
Hospice Care/og [organization & Administration]
Hospices/og [organization & Administration]
Humans
Journal of Pediatric Nursing
Kramer N
Male
November 2017 List
Pediatrics
Quality Assurance Health Care
Residence Characteristics
Risk Assessment
Ryan JG
United States
Vizzachero N
Waechtler E
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
Notes
<p>1440-1754<br />Joffre, Christelle<br />Lesage, Fabrice<br />Bustarret, Olivier<br />Hubert, Philippe<br />Oualha, Mehdi<br />Journal Article<br />Australia<br />J Paediatr Child Health. 2016 Jun;52(6):595-9. doi: 10.1111/jpc.13214.</p>
URL Address
<a href="http://onlinelibrary.wiley.com/doi/10.1111/jpc.13214/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1111/jpc.13214/abstract</a>
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Title
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Children with Down syndrome: Clinical course and mortality-associated factors in a French medical paediatric intensive care unit
Publisher
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Journal Of Paediatrics And Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
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Hospitalization; Intensive Care Units Pediatric; Adolescent; Child; Child Preschool; Critical Illness/ Mortality; Critically Ill Children; Down Syndrome; Down Syndrome/ Complications/ Mortality; Female; Hospital Mortality; Humans; Infant; Male; Mortality; Retrospective Studies
Creator
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Joffre C; Lesage F; Bustarret O; Hubert P; Oualha M
Description
An account of the resource
AIM: To investigate clinical course and mortality-associated factors in children with Down syndrome (DS) managed in a medical paediatric intensive care unit. METHODS: A single-centre, retrospective study conducted between 2001 and 2010 in DS children aged 1 month to 16 years. RESULTS: Sixty-six patients with a median age of 24 months (1-192) and a male/female ratio of 1.5 were analysed. Patients presented with history of congenital heart disease (n = 52, 78.8%), mechanical ventilation (n = 40, 60.6%) and chronic upper airway obstruction (n = 10, 15.1%). The primary reason for admission was respiratory failure (n = 56, 84.8%). Pulmonary arterial hypertension (PAH) (n = 19, 28.8%), acute respiratory distress syndrome (ARDS) (n = 18, 27.2%) and sepsis (n = 14, 21.2%) were observed during their clinical course. Twenty-six patients died (39.4%). Mortality-associated factors included the following: (i) baseline characteristics: history of mechanical ventilation, chronic upper airway obstruction and congenital heart disease; (ii) clinical course during paediatric intensive care unit stay: sepsis, catecholamine support, ARDS, PAH and nosocomial infection. In multivariate logistic analysis, history of mechanical ventilation, ARDS and PAH remained independently associated with death. CONCLUSIONS: The mortality rate in critically ill DS children admitted for medical reasons is high and is predominantly associated with respiratory conditions.
Identifier
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<a href="https://doi.org/10.1111/jpc.13214" target="_blank" rel="noreferrer">10.1111/jpc.13214</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).
2016
Adolescent
Bustarret O
Child
Child Preschool
Critical Illness/ Mortality
Critically Ill Children
Down Syndrome
Down Syndrome/ Complications/ Mortality
Female
Hospital Mortality
Hospitalization
Hubert P
Humans
Infant
Intensive Care Units Pediatric
Joffre C
Journal of Paediatrics and Child Health
Lesage F
Male
Mortality
November 2017 List
Oualha M
Retrospective Studies
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2017 List
Notes
<p>1557-8615<br />Hon, Kam Lun<br />Luk, Man Ping<br />Fung, Wing Ming<br />Li, Cho Ying<br />Yeung, Hiu Lee<br />Liu, Pui Kwun<br />Li, Shun<br />Tsang, Kathy Yin Ching<br />Li, Chi Kong<br />Chan, Paul Kay Sheung<br />Cheung, Kam Lau<br />Leung, Ting Fan<br />Koh, Pei Lin<br />Journal Article<br />United States<br />J Crit Care. 2017 Apr;38:57-61. doi: 10.1016/j.jcrc.2016.09.019. Epub 2016 Sep 30.</p>
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Title
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Mortality, length of stay, bloodstream and respiratory viral infections in a pediatric intensive care unit
Publisher
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Journal of Critical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Length Of Stay; Asthma; Bacterial Coinfection; Child; Child Health Services; Child Preschool; Critical Care; Female; Hong Kong/epidemiology; Hospitalization; Humans; Infant; Intensive Care Units Pediatric; Leukemia; Logistic Models; Lymphoma; Male; Odds Ratio; Pediatric Intensive Care; Respiratory Tract Infections/complications/ Epidemiology/microbiology/mortality; Respiratory Virus; Retrospective Studies; Risk Factors; Sepsis/complications/ Epidemiology/microbiology/mortality; Survival Analysis
Creator
An entity primarily responsible for making the resource
Hon KL; Luk MP; Fung WM; Li CY; Yeung HL; Liu PK; Li S; Tsang KY; Li CK; Chan PK; Cheung KL; Leung TF; Koh PL
Description
An account of the resource
OBJECTIVES: We investigated whether diagnostic categories and presence of infections were associated with increased mortality or length of stay (LOS) in patients admitted to a pediatric intensive care unit (PICU). METHODS: A retrospective study of all PICU admissions between October 2002 and April 2016 was performed. Oncologic vs nononcologic, trauma/injuries vs nontraumatic, infectious (gram-positive, gram-negative, fungal bloodstream infections, common respiratory viruses) vs noninfectious diagnoses were evaluated for survival and LOS. RESULTS: Pediatric intensive care unit admissions (n = 2211) were associated with a mortality of 5.3%. Backward binary logistic regression showed that nonsurvival was associated with leukemia (odds ratio [OR], 4.81; 95% confidence interval [CI], 2.2-10.10; P < .0005), lymphoma (OR, 21.34; 95% CI, 3.89-117.16; P < .0005), carditis/myocarditis (OR, 7.91; 95% CI, 1.98-31.54; P = .003), encephalitis (OR, 6.93; 95% CI, 3.27-14.67; P < .0005), bloodstream infections with gram-positive organisms (OR, 5.32; 95% CI, 2.67-10.60; P < .0005), gram-negative organisms (OR, 8.23; 95% CI, 4.10-16.53; P < .0005), fungi (OR, 3.93; 95% CI, 1.07-14.42; P = .039), and pneumococcal disease (OR, 3.26; 95% CI, 1.21-8.75; P = .019). Stepwise linear regression revealed that LOS of survivors was associated with bloodstream gram-positive infection (B = 98.2; 95% CI, 75.7-120.7; P < .0005). CONCLUSIONS: Patients with diagnoses of leukemia, lymphoma, cardiomyopathy/myocarditits, encephalitis, and comorbidity of bloodstream infections and pneumococcal disease were significantly at risk of PICU mortality. Length of stay of survivors was associated with bloodstream gram-positive infection. The highest odds for death were among patients with leukemia/lymphoma and bloodstream coinfection. As early diagnosis of these childhood malignancies is desirable but not always possible, adequate and early antimicrobial coverage for gram-positive and gram-negative bacteria might be the only feasible option to reduce PICU mortality in these patients. In Hong Kong, a subtropical Asian city, none of the common respiratory viruses were associated with increased mortality or LOS in PICU.
Identifier
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10.1016/j.jcrc.2016.09.019
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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
Asthma
Bacterial Coinfection
Chan PK
Cheung KL
Child
Child Health Services
Child Preschool
Critical Care
Female
Fung WM
Hon KL
Hong Kong/epidemiology
Hospitalization
Humans
Infant
Intensive Care Units Pediatric
Journal of Critical Care
Koh PL
Length Of Stay
Leukemia
Leung TF
Li CK
Li CY
Li S
Liu PK
Logistic Models
Luk MP
Lymphoma
Male
November 2017 List
Odds Ratio
Pediatric Intensive Care
Respiratory Tract Infections/complications/ Epidemiology/microbiology/mortality
Respiratory Virus
Retrospective Studies
Risk Factors
Sepsis/complications/ Epidemiology/microbiology/mortality
Survival Analysis
Tsang KY
Yeung HL
-
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 2017 List
URL Address
<a href="https://journals.rcni.com/nursing-children-and-young-people/children-with-lifeshortening-conditions-are-denied-the-support-they-need-says-charity-ncyp.28.7.7.s6" target="_blank" rel="noreferrer">https://journals.rcni.com/nursing-children-and-young-people/children-with-lifeshortening-conditions-are-denied-the-support-they-need-says-charity-ncyp.28.7.7.s6</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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Children with life-shortening conditions are denied the support they need, says charity
Publisher
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Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Healthcare Financing; Palliative Care; Respite Care; Adolescent; Charities; Child; Child Preschool; England; Hospice And Palliative Care Nursing; Humans; Infant; Infant Newborn; State Medicine; Young Adult
Creator
An entity primarily responsible for making the resource
[No authors listed]
Description
An account of the resource
Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
Identifier
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<span><span></span><span><a href="https://doi.org/10.7748/ncyp.28.7.7.s6">10.7748/ncyp.28.7.7.s6</a></span></span><span><span><br /></span></span>
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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).
[No authors listed]
2016
Adolescent
August 2017 List
Charities
Child
Child Preschool
England
Healthcare Financing
Hospice And Palliative Care Nursing
Humans
Infant
Infant Newborn
Nursing Children and Young People
Palliative Care
Respite Care
State Medicine
Young Adult
-
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 2017 List
URL Address
<a href="https://journals.rcni.com/nursing-children-and-young-people/consistency-in-end-of-life-care-ncyp.28.8.8.s8" target="_blank" rel="noreferrer">https://journals.rcni.com/nursing-children-and-young-people/consistency-in-end-of-life-care-ncyp.28.8.8.s8</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Consistency in end of life care
Publisher
An entity responsible for making the resource available
Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Child; Child Preschool; Communication; Decision Making; Hospice And Palliative Care Nursing/ Standards; Humans; Infant; Nurse-patient Relations; Patient Participation; Pediatric Nursing/ Standards; Practice Guidelines As Topic
Creator
An entity primarily responsible for making the resource
Allen D
Description
An account of the resource
Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and young people age 1-19 years died in England and Wales in 2012.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://journals.rcni.com/doi/full/10.7748/ncyp.28.8.8.s8" target="_blank" rel="noreferrer">10.7748/ncyp.28.8.8.s8</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).
2016
Adolescent
Allen D
August 2017 List
Child
Child Preschool
Communication
Decision Making
Hospice And Palliative Care Nursing/ Standards
Humans
Infant
Nurse-patient Relations
Nursing Children and Young People
Patient Participation
Pediatric Nursing/ Standards
Practice Guidelines As Topic
-
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 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
End-of-life Practices Among Tertiary Care Picus In The United States: A Multicenter Study
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Adolescent;Cause Of Death;Child;Child Preschool;Female;Hospital Mortality;Humans;Infant;Intensive Care Units Pediatric;Length Of Stay;Male;Practice Patterns Physicians';Prospective Studies;Terminal Care/methods;Terminal Care/statistics & Numerical Data;Tertiary Healthcare;Tissue And Organ Procurement/statistics & Numerical Data;United States
Creator
An entity primarily responsible for making the resource
Meert KL; Keele L; Morrison W; Berg RA; Dalton H; Newth CJL; Harrison R; Wessel DL; Shanley T; Carcillo J; Clark A; Holubkov R; Jenkins T L; Doctor A; Dean JM; Pollack M
Description
An account of the resource
OBJECTIVE: To describe variability in end-of-life practices among tertiary care PICUs in the United States. DESIGN: Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. SETTING: Seven clinical centers affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Patients included in the primary study were less than 18 years old, admitted to a PICU, and not moribund on PICU admission. Patients included in the secondary analysis were those who died during their hospital stay. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Two hundred and seventy-five (2.7%; range across sites, 1.3-5.0%) patients died during their hospital stay; of these, 252 (92%; 76-100%) died in a PICU. Discussions with families about limitation or withdrawal of support occurred during the initial PICU stay for 173 patients (63%; 47-76%; p = 0.27) who died. Of these, palliative care was consulted for 67 (39%; 12-46%); pain service for 11 (6%; 10 of which were at a single site); and ethics committee for six (3%, from three sites). Mode of death was withdrawal of support for 141 (51%; 42-59%), failed cardiopulmonary resuscitation for 53 (19%; 12-28%), limitation of support for 46 (17%; 7-24%), and brain death for 35 (13%; 8-20%); mode of death did not differ across sites (p = 0.58). Organ donation was requested from 101 families (37%; 17-88%; p < 0.001). Of these, 20 donated (20%; 0-64%). Sixty-two deaths (23%; 10-53%; p < 0.001) were medical examiner cases. Of nonmedical examiner cases (n = 213), autopsy was requested for 79 (37%; 17-75%; p < 0.001). Of autopsies requested, 53 (67%; 50-100%) were performed. CONCLUSIONS: Most deaths in Collaborative Pediatric Critical Care Research Network-affiliated PICUs occur after life support has been limited or withdrawn. Wide practice variation exists in requests for organ donation and autopsy.
Identifier
An unambiguous reference to the resource within a given context
10.1097/PCC.0000000000000520
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).
2015
Adolescent
Berg RA
Carcillo J
Cause Of Death
Child
Child Preschool
Clark A
Dalton H
Dean JM
Doctor A
Female
Harrison R
Holubkov R
Hospital Mortality
Humans
Infant
Intensive Care Units Pediatric
Jenkins T L
July 2017 List
Keele L
Length Of Stay
Male
Meert KL
Morrison W
Newth CJL
Pediatric Critical Care Medicine
Pollack M
Practice Patterns Physicians'
Prospective Studies
Shanley T
Terminal Care/methods
Terminal Care/statistics & Numerical Data
Tertiary Healthcare
Tissue And Organ Procurement/statistics & Numerical Data
United States
Wessel DL
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
On The Child's Own Initiative: Parents Communicate With Their Dying Child About Death
Publisher
An entity responsible for making the resource available
Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Adolescent; Adult; Attitude To Death; Behavioral Research; Child; Child Behavior; Child Care/psychology; Child Preschool; Female; Humans; Infant; Male; Neoplasms/psychology; Neoplasms/therapy; Palliative Care/psychology; Parent-child Relations; Parents/psychology; Qualitative Research; Sweden; Terminally Ill/psychology
Creator
An entity primarily responsible for making the resource
Jalmsell L; Kontio T; Stein M; Henter JI; Kreicbergs U
Description
An account of the resource
Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about death with their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.
Identifier
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DOI: 10.1080/07481187.2014.913086
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).
2015
Adolescent
Adult
Attitude To Death
Behavioral Research
Child
Child Behavior
Child Care/psychology
Child Preschool
Death studies
Female
Henter JI
Humans
Infant
Jalmsell L
Kontio T
Kreicbergs U
Male
March 2016 List
Neoplasms/psychology
Neoplasms/therapy
Palliative Care/psychology
Parent-child Relations
Parents/psychology
Qualitative Research
Stein M
Sweden
Terminally Ill/psychology
-
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 2017 List
Notes
<p>Misko, Maira Deguer dos Santos, Maiara Rodrigues Ichikawa, Carolliny Rossi de Faria de Lima, Regina Aparecida Garcia Bousso, Regina Szylit S0104-11692015000300560</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Family's Experience Of The Child And/or Teenager In Palliative Care: Fluctuating Between Hope And Hopelessness In A World Changed By Losses
Publisher
An entity responsible for making the resource available
Revista Latino-americana De Enfermagem
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Bereavement; Family Health; Family/px [psychology]; Hope; Palliative Care; Adolescent; Child; Child Preschool; Female; Humans; Male; Young Adult
Creator
An entity primarily responsible for making the resource
Misko M D; dos Santos M R; Ichikawa C R; de Lima R A; Bousso R
Description
An account of the resource
OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and the Theory Based on Data were used. Fifteen families with kids and/or teenagers in palliative care were interviewed, and data were collected through semi-structured interviews. RESULTS: after the comparative analysis of the data, a substantive theory was formed "fluctuating between hope and hopelessness in a world changed by losses", composed by: "having a life shattered ", "managing the new condition", "recognizing the palliative care" and "relearning how to live". Hope, perseverance and spiritual beliefs are determining factors for the family to continue fighting for the life of their child in a context of uncertainty, anguish and suffering, due to the medical condition of the child. Along the way, the family redefines values and integrates palliative care in their lives. CONCLUSION: staying with the child at home is what was set and kept hope of dreaming about the recovery and support of the child's life, but above all, what takes it away even though temporarily is the possibility of their child's death when staying within the context of the family.
Identifier
An unambiguous reference to the resource within a given context
10.1590/0104-1169.0468.2588
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2015
Adolescent
Bereavement
Bousso R
Child
Child Preschool
de Lima R A
dos Santos M R
Family Health
Family/px [psychology]
Female
Hope
Humans
Ichikawa C R
Male
Misko M D
Palliative Care
Revista Latino-Americana de Enfermagem
September 2017 List
Young Adult
-
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 2017 List
Notes
<p>Lindley, Lisa C Nageswaran, Savithri 1049909115609589</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pediatric Primary Care Involvement In End-of-life Care For Children
Publisher
An entity responsible for making the resource available
American Journal Of Hospice And Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Primary Health Care/sn [statistics & Numerical Data]; Terminal Care/sn [statistics & Numerical Data]; Adolescent; Age Factors; California; Child; Child Preschool; Female; Home Care Services/sn [statistics & Numerical Data]; Hospice Care/sn [statistics & Numerical Data]; Humans; Infant; Male; Retrospective Studies; Young Adult
Creator
An entity primarily responsible for making the resource
Lindley LC; Nageswaran S
Description
An account of the resource
OBJECTIVES: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. METHODS: California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations. RESULTS: Of the 2037 children who died between 2007 and 2010, 11% used hospice and 23% used home health. Among all children, primary care was not related to hospice use and was associated with home health use, usual source of care (OR = 1.83, P < .05), comprehensive care (OR = 1.60, P < .05), and continuous care (low: OR = 1.49, P < .05; moderate: OR = 2.57, P < .05; high: OR = 2.12, P < .05). Primary care for children aged 15 to 20 years was related to hospice use, usual source of care (OR = 4.06, P < .05) and continuous care (low: OR = 4.92, P < .05; moderate OR = 4.09, P < .05; high OR = 3.92, P < .05). Primary care for children under 5 years was associated with home health use, usual source of care (OR = 2.59, P < .05), comprehensive care (OR = 2.49, P < .05), and continuous care (low: OR = 2.22, P < .05; moderate: OR = 3.64, P < .05; high: OR = 3.62, P < .05). For children aged 6 to 14 years, this association was seen with continuous care (moderate: OR = 2.38, P < .05; high: OR = 2.13, P < .05). Home health for children aged 15 to 20 years was related to continuous care (moderate: OR = 2.32, P < .05). CONCLUSION: Primary care involvement affected hospice use among older age-groups and home health use among younger age-groups. These findings underscore the need for clinical knowledge about end-of-life care for children of all ages among primary care providers.
Identifier
An unambiguous reference to the resource within a given context
10.1177/1049909115609589
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).
2017
Adolescent
Age Factors
American Journal of Hospice and Palliative Medicine
California
Child
Child Preschool
Female
Home Care Services/sn [statistics & Numerical Data]
Hospice Care/sn [statistics & Numerical Data]
Humans
Infant
Lindley LC
Male
Nageswaran S
Primary Health Care/sn [statistics & Numerical Data]
Retrospective Studies
September 2017 List
Terminal Care/sn [statistics & Numerical Data]
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Critical Care/mt [methods]; Intensive Care Units Pediatric; Life Support Care/ut [utilization]; Resuscitation Orders; Terminal Care/mt [methods]; Child; Child Preschool; Female; Humans; Infant; Length Of Stay; Logistic Models; Male; Prospective Studies; Severity Of Illness Index
Creator
An entity primarily responsible for making the resource
Keele L; Meert KL; Berg RA; Dalton H; Newth CJ; Harrison R; Wessel DL; Shanley T; Carcillo J; Morrison W; Funai T; Holubkov R; Dean JM; Pollack M; Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
Description
An account of the resource
OBJECTIVES: Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child's PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions. DESIGN: Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. SETTING: Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network. PATIENTS: Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state. CONCLUSIONS: Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.
Identifier
An unambiguous reference to the resource within a given context
10.1097/PCC.0000000000000614
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).
2016
Berg RA
Carcillo J
Child
Child Preschool
Critical Care/mt [methods]
Dalton H
Dean JM
Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network
Female
Funai T
Harrison R
Holubkov R
Humans
Infant
Intensive Care Units Pediatric
January 2017 List
Keele L
Length Of Stay
Life Support Care/ut [utilization]
Logistic Models
Male
Meert KL
Morrison W
Newth CJ
Pediatric Critical Care Medicine
Pollack M
Prospective Studies
Resuscitation Orders
Severity Of Illness Index
Shanley T
Terminal Care/mt [methods]
Wessel DL
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
Publisher
An entity responsible for making the resource available
Research In Developmental Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Adult; Attitude Of Health Personnel; Attitude To Health; Cerebral Palsy; Child; Child Preschool; Decision Making; Disabled Children; Dissent And Disputes; Female; Humans; Infant; Infant Newborn; Intellectual Disability; Male; Middle Aged; Neurologists; Palliative Care; Parents; Pediatricians; Professional-family Relations; Qualitative Research; Resuscitation Orders; Retrospective Studies; Severity Of Illness Index; Terminal Care; Young Adult
Caregiver; End Of Life; Healthcare Professional; Intellectual Disability; Qualitative Research; Shared Decision-making
Creator
An entity primarily responsible for making the resource
Zaal-Schuller IH; Willems DL; Ewals FV; van Goudoever JB; de Vos MA
Description
An account of the resource
BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research was to investigate the experiences of the parents and the involved physician during the end-of-life decision-making (EoLDM) process for children with PIMD.
METHODS:
In a retrospective, qualitative study, we conducted semi-structured interviews with the physicians and parents of 14 children with PIMD for whom an EoLD was made within the past two years.
RESULTS:
A long-lasting relationship appeared to facilitate the EoLDM process, although previous negative healthcare encounters could also lead to distrust. Parents and physicians encountered disagreements during the EoLDM process, but these disagreements could also improve the decision-making process. Most parents, as well as most physicians, considered the parents to be the experts on their child. In making an EoLD, both parents and physicians preferred a shared decision-making approach, although they differed in what they actually meant by this concept.
CONCLUSION:
The EoLDM process for children with PIMD can be improved if physicians are more aware of the specific situation and of the roles and expectations of the parents of children with PIMD.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.ridd.2016.09.012
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).
2016
Adolescent
Adult
Attitude Of Health Personnel
Attitude To Health
Caregiver
Cerebral Palsy
Child
Child Preschool
de Vos MA
Decision Making
Disabled Children
Dissent And Disputes
End Of Life
Ewals FV
Female
Healthcare Professional
Humans
Infant
Infant Newborn
Intellectual Disability
Male
Middle Aged
Neurologists
Palliative Care
Parents
Pediatricians
Professional-family Relations
Qualitative Research
Research in Developmental Disabilities
Resuscitation Orders
Retrospective Studies
September 2016 List
Severity Of Illness Index
Shared Decision-making
Terminal Care
van Goudoever JB
Willems DL
Young Adult
Zaal-Schuller IH
-
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 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Perceptions Of The Pediatric Hospice Experience Among English- And Spanish-speaking Families
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
2016
Subject
The topic of the resource
Adolescent; Adult; Attitude To Death/ethnology; Caregivers/psychology; Child; Child Preschool; Communication; Ethnic Groups/psychology; European Continental Ancestry; Group/psychology; Family/psychology; Female; Hispanic Americans/psychology; Hospice Care/psychology; Humans; Infant; Male; Middle Aged; Neoplasms/nursing; Neoplasms/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Thienprayoon R; Marks E; Funes M; Martinez-Puente LM; Winick N; Lee SC
Description
An account of the resource
OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience.
STUDY DESIGN:
We held 20 semistructured interviews with 34 caregivers of children who died of cancer and used hospice. Interviews were conducted in the caregivers' primary language: 12 in English and 8 in Spanish. Interviews were recorded, transcribed, and analyzed using accepted qualitative methods.
RESULTS:
Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. Five English-speaking families returned to the hospital because of unsatisfactory symptom management and the need for additional supportive services. Alternatively, Spanish speakers commonly stressed the importance of being at home and did not focus on symptom management. Both groups invoked themes of caregiver appraisal, but English-speaking caregivers more commonly discussed themes of financial hardship and fear of insurance loss, while Spanish-speakers focused on difficulties of bedside caregiving and geographic separation from family.
CONCLUSIONS:
The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1089/jpm.2015.0137
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).
2016
Adolescent
Adult
Attitude To Death/ethnology
Caregivers/psychology
Child
Child Preschool
Communication
Ethnic Groups/psychology
European Continental Ancestry
Family/psychology
Female
Funes M
Group/psychology
Hispanic Americans/psychology
Hospice Care/psychology
Humans
Infant
Journal of Palliative Medicine
Lee SC
Male
Marks E
Martinez-Puente LM
Middle Aged
Neoplasms/nursing
Neoplasms/psychology
October 2016 List
Thienprayoon R
Winick N
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Staff Efficiency Trends Among Pediatric Hospices, 2002-2011.
Publisher
An entity responsible for making the resource available
Nursing Economic$
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; California; Child; Child Preschool; Efficiency Organizational/statistics & Numerical Data; Female; Forecasting; Hospice Care/statistics & Numerical Data; Hospice Care/trends; Hospice Care/statistics & Numerical Data; Hospices/trends; Hospitals Pediatric/statistics & Numerical Data; Hospitals Pediatric; Humans; Infant; Infant Newborn; Male; Personnel Staffing And Scheduling/statistics & Numerical Data; Personnel Staffing And Scheduling/trends; Workload/statistics & Numerical Data; Young Adult
Creator
An entity primarily responsible for making the resource
Cozad MJ; Lindley LC; Mixer SJ
Description
An account of the resource
This study provided the first examination of staff efficiency trends among pediatric hospices. Although pediatric staff efficiency demonstrated large variability from 2002 to 2011, the general trend in efficiency from 2003 to 2010. The decline in efficiency means, on average, pediatric hospices had higher operating expenses and used more capacity, but greater amounts of these greater outputs as measured by visits per patient. The study also highlights the crucial role pediatric hospice nurse managers play in developing effective workforce strategies that allow for responsive changes to workload fluctuations. Due to the associations between efficiency, regulation, and growth, nurse leaders' abilities to develop effective strategies are more imperative than ever to ensure quality end-of-life care for children and their families.
Identifier
An unambiguous reference to the resource within a given context
PMCID: PMC5045247
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).
2016
Adolescent
California
Child
Child Preschool
Cozad MJ
Efficiency Organizational/statistics & Numerical Data
Female
Forecasting
Hospice Care/statistics & Numerical Data
Hospice Care/trends
Hospices/trends
Hospitals Pediatric
Hospitals Pediatric/statistics & Numerical Data
Humans
Infant
Infant Newborn
Lindley LC
Male
Mixer SJ
November 2016 List
Nursing Economic$
Personnel Staffing And Scheduling/statistics & Numerical Data
Personnel Staffing And Scheduling/trends
Workload/statistics & Numerical Data
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer
Publisher
An entity responsible for making the resource available
Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Canada; Child; Child Preschool; Curriculum/standards; Health Personnel/education; Humans; Neoplasms/therapy; Palliative Care/methods; Palliative Care/standards; Pediatrics/methods; Program Evaluation; Quality Of Life/psychology; Teaching/standards
Pediatrics; Palliative Care; Cancer Quality Care; Education Knowledge Translation
Creator
An entity primarily responsible for making the resource
Widger K; Friedrichsdorf SJ; Wolfe J; Liben S; Pole JD; Bouffet E; Greenberg M; Husain A; Siden H; Whitlock JA; Rapoport A
Description
An account of the resource
Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model.
Methods/design
In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams.
Discussion
Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1186/s12904-016-0085-8
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).
2016
Adolescent
BMC Palliative Care
Bouffet E
Canada
Cancer Quality Care
Child
Child Preschool
Curriculum/standards
Education Knowledge Translation
Friedrichsdorf SJ
Greenberg M
Health Personnel/education
Humans
Husain A
Liben S
Neoplasms/therapy
November 2016 List
Palliative Care
Palliative Care/methods
Palliative Care/standards
Pediatrics
Pediatrics/methods
Pole JD
Program Evaluation
Quality Of Life/psychology
Rapoport A
Siden H
Teaching/standards
Whitlock JA
Widger K
Wolfe J
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Limiting And Withdrawing Life Support In The Picu: For Whom Are These Options Discussed?
Publisher
An entity responsible for making the resource available
Pediatric Critical Care Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Child; Child Preschool; Critical Care/methods; Female; Humans; Infant; Intensive Care Units Pediatric; Length Of Stay; Life Support Care/utilization; Logistic Models; Male; Prospective Studies; Resuscitation Orders; Severity Of Illness Index; Terminal Care/methods
Creator
An entity primarily responsible for making the resource
Keele L; Meert KL; Berg RA; Dalton H; Newth CJ; Harrison R; Wessel DL; Shanley T; Carcillo J; Morrison W; Funai T; Holubkov R; Dean JM; Pollack M
Description
An account of the resource
Most deaths in U.S. PICUs occur after a decision has been made to limitation or withdrawal of life support. The objective of this study was to describe the clinical characteristics and outcomes of children whose families discussed limitation or withdrawal of life support with clinicians during their child's PICU stay and to determine the factors associated with limitation or withdrawal of life support discussions.
DESIGN:
Secondary analysis of data prospectively collected from a random sample of children admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013.
SETTING:
Seven clinical sites affiliated with the Collaborative Pediatric Critical Care Research Network.
PATIENTS:
Ten thousand seventy-eight children less than 18 years old, admitted to a PICU, and not moribund at admission.
INTERVENTIONS:
None.
MEASUREMENTS AND MAIN RESULTS:
Families of 248 children (2.5%) discussed limitation or withdrawal of life support with clinicians. By using a multivariate logistic model, we found that PICU admission age less than 14 days, reduced functional status prior to hospital admission, primary diagnosis of cancer, recent catastrophic event, emergent PICU admission, greater physiologic instability, and government insurance were independently associated with higher likelihood of discussing limitation or withdrawal of life support. Black race, primary diagnosis of neurologic illness, and postoperative status were independently associated with lower likelihood of discussing limitation or withdrawal of life support. Clinical site was also independently associated with likelihood of limitation or withdrawal of life support discussions. One hundred seventy-three children (69.8%) whose families discussed limitation or withdrawal of life support died during their hospitalization; of these, 166 (96.0%) died in the PICU and 149 (86.1%) after limitation or withdrawal of life support was performed. Of those who survived, 40 children (53.4%) were discharged with severe or very severe functional abnormalities, and 15 (20%) with coma/vegetative state.
CONCLUSIONS:
Clinical factors reflecting type and severity of illness, sociodemographics, and institutional practices may influence whether limitation or withdrawal of life support is discussed with families of PICU patients. Most children whose families discuss limitation or withdrawal of life support die during their PICU stay; survivors often have substantial disabilities.
Identifier
An unambiguous reference to the resource within a given context
doi: 10.1097/PCC.0000000000000614
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).
2016
Berg RA
Carcillo J
Child
Child Preschool
Critical Care/methods
Dalton H
Dean JM
Female
Funai T
Harrison R
Holubkov R
Humans
Infant
Intensive Care Units Pediatric
Keele L
Length Of Stay
Life Support Care/utilization
Logistic Models
Male
Meert KL
Morrison W
Newth CJ
November 2016 List
Pediatric Critical Care Medicine
Pollack M
Prospective Studies
Resuscitation Orders
Severity Of Illness Index
Shanley T
Terminal Care/methods
Wessel DL
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
May 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Parental Decision-making On
Utilisation Of Out-of- Home Respite In Children’s Palliative Care: Findings Of
Qualitative Case Study Research - A Proposed New Model.
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Adult; Child; Child Preschool; Decision Making; Female; Humans; Ireland/epidemiology; Longitudinal Studies; Male; Palliative Care/psychology; Parents/psychology; Qualitative Research; Quality Of Health Care; Respite Care; Social Support; Terminally Ill/psychology
Children; Pediatrics; Palliative Care; Parents; Respite
Creator
An entity primarily responsible for making the resource
Ling J; Payne S; Connaire K; McCarron M
Description
An account of the resource
Background
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research.
Methods
Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted.
Results
Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home.
Conclusion
Respite is an essential element of children's palliative care. Utilisation of out-of-home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family-focused respite that are important to families of children with life-limiting conditions.
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).
2016
Adolescent
Adult
Child
Child Preschool
Child: Care, Health and Development
Children
Connaire K
Decision Making
Female
Humans
Ireland/epidemiology
Ling J
Longitudinal Studies
Male
May 2016 List
McCarron M
Palliative Care
Palliative Care/psychology
Parents
Parents/psychology
Payne S
Pediatrics
Qualitative Research
Quality Of Health Care
Respite
Respite Care
Social Support
Terminally Ill/psychology