1
40
13
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
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Backlog
URL Address
<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">http://doi.org/10.1093/pch/20.3.155</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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Introducing a Lexicon of Terms for Pediatric Palliative Care
Publisher
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Paediatrics & Child Health
Date
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2015
Subject
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PEDI Study
Creator
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Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Identifier
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<a href="http://doi.org/10.1093/pch/20.3.155" target="_blank" rel="noreferrer">10.1093/pch/20.3.155</a>
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Type
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Journal Article
Description
An account of the resource
2015
2015
Backlog
Davies D
Journal Article
Macdonald ME
Paediatrics & Child Health
PEDI Study
Siden H
Spicer S
Vadeboncoeur C
-
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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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
Backlog
URL Address
<a href="http://doi.org/10.1186/1472-684X-14-1" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-684X-14-1</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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Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Widger K; Tourangeau AE; Steele R; Streiner DL
Description
An account of the resource
BACKGROUND: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. METHODS: The study purpose was to develop and test an instrument to measure mothers' perspectives on the quality of care received before, at the time of, and following a child's death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children's hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted. RESULTS: Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument. CONCLUSIONS: There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children's end-of-life care.
2015
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1472-684X-14-1" target="_blank" rel="noreferrer">10.1186/1472-684X-14-1</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).
Type
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Journal Article
2015
Backlog
BMC Palliative Care
Journal Article
Steele R
Streiner DL
Tourangeau AE
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Publications
Subject
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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
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<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/" target="_blank" rel="noreferrer noopener">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/</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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Charting the Territory: Children and families living with progressive life-threatening conditions
Publisher
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Paediatrics & Child Health
Date
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2015
Creator
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Siden H; Steele R
Description
An account of the resource
OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents. METHODS: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child. RESULTS: These children had a high symptom burden. The three most common symptoms were pain, sleep problems and feeding difficulties; on average, they had 3.2 symptoms of concern. Despite analgesic use, the frequency of pain episodes and distress were invariant over time, suggesting that treatments were not successful. Parents experienced anxiety, depression and burden; at the same time they also reported positive life change and a high degree of spirituality. The child’s condition resulted in parental changes in living arrangements, work status and hours devoted to caregiving. Nearly two-thirds of families were involved with a palliative care team; the size of the community in which a family resided did not make a significant difference in such involvement. CONCLUSIONS: These families experience many challenges, for the patient, other individual members and the family as a whole. At least some of these challenges may be alleviated by early and organized palliative care. Effective interventions are needed to enhance symptom management for the ill child and to alleviate the various negative impacts on the family.
2015-04
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Type
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Journal Article
2015
Backlog
Charting the territory
Journal Article
Paediatrics & Child Health
Siden H
Steele R
-
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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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
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<a href="http://doi.org/10.1089/jpm.2016.0177" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2016.0177</a>
<a href="http://www.ncbi.nlm.nih.gov/pubmed/27455077" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pubmed/27455077</a>
Dublin Core
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Title
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Pediatric palliative care program versus usual care and healthcare resources utilization in British Columbia: a matched-pairs cohort study
Publisher
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Journal Of Palliative Medicine
Date
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2015
Creator
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Conte T; Mitton C; Erdelyi S; Siden H; Chavoshi N
Description
An account of the resource
BACKGROUND: Evidence on the impact of pediatric palliative care programs (PPCP) on resource utilization is scarce and requires broader measures to include utilization beyond the hospital setting. OBJECTIVE: This research aims to provide a Canadian comparative analysis between children in a PPCP with those under usual care, including hospice use to inpatient resource use measurement. METHODS: We conducted a retrospective matched-pairs (disease and age at death) cohort comparison of children who died in hospice versus hospital (never enrolled in a PPCP), from 2008 to 2012. Utilization was retrieved from administrative databases and chart review. The main outcomes were number of admissions and length of stay (LOS). RESULTS: Eleven pairs were found. PPCP users were more likely to have advanced directives (100% vs. 27%). After controlling for disease and age, we found no significant difference in number of admissions; however, PPCP users had an increase in admissions post-referral compared to pre-referral (median 3.08 admissions), driven by the need for critical care. We did not find a significant difference in LOS, but observed longer admissions among PPCP users pre- (1.91 days/month) and post-referral (3.66 days/month) compared to usual care. Over 60% of inpatient utilization shifted to the hospice post-referral. DISCUSSION: The terminal pediatric population referred to PPCP may systematically differ from those under usual care even before enrollment, presenting with higher inpatient utilization in critical care nearing death. A significant portion of inpatient utilization shifted to the hospice, with implications for resource reallocation and enhancements in PPCP referrals.
2015-07
Identifier
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<a href="http://doi.org/10.1089/jpm.2016.0177" target="_blank" rel="noreferrer">10.1089/jpm.2016.0177</a>
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Type
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Journal Article
2015
Backlog
Chavoshi N
Conte T
Erdelyi S
Journal Article
Journal of Palliative Medicine
Mitton C
Siden H
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
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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
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403282/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403282/</a>
Dublin Core
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Title
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Enhancing the quality of palliative care for children with cancer: A nation-wide train-the-trainer educational initiative
Publisher
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Paediatrics & Child Health
Date
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2015
Creator
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Widger K; Bouffet E; Friedrichsdorf S; Greenberg M; Husain A; Liben S; Pole JD; Siden H; Whitlock J; Wolfe J; Rapoport A
Description
An account of the resource
It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little training in PC (2), and bereaved parents continue to report suboptimal care throughout the disease course (3,4). It is crucial that all health professionals caring for children with cancer receive comprehensive education about evidence-based PC and support to implement new knowledge. To achieve these goals, we will implement a national ‘roll-out’ of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘train-the-trainer’ model.
Identifier
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<a href="https://doi.org/10.1093/pch/20.3.157" target="_blank" rel="noreferrer">10.1093/pch/20.3.157</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).
2015
Bouffet E
Friedrichsdorf S
Greenberg M
Husain A
Liben S
Paediatrics & Child Health
Pole JD
Rapoport A
Siden H
Whitlock J
Widger K
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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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
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403269/" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403269/</a>
Dublin Core
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Title
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Paediatric palliative care: There is always more we can do
Publisher
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Paediatrics & Child Health
Date
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2015
Creator
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Rapoport A; Liben S
Identifier
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<a href="https://doi.org/10.1093/pch/20.3.123" target="_blank" rel="noreferrer">10.1093/pch/20.3.123</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).
2015
Liben S
Paediatrics & Child Health
Rapoport 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
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
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies.
Publisher
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Cmaj Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Conte T; Mitton C; Trenaman LM; Chavoshi N; Siden H
Description
An account of the resource
BACKGROUND: Pediatric palliative care is a relatively new and evolving field, and the cost of pediatric palliative care programs is unclear. We conducted a systematic review to compare inpatient health care utilization and costs among children with life-threatening conditions who have accessed a pediatric palliative care program and those who have not. METHODS: We searched MEDLINE, Embase, CINAHL and LILACS databases from January 2000 to July 2013, as well as the grey literature, for experimental or observational studies that compared pediatric palliative care programs with usual care. Outcomes of interest included hospital admissions, length of stay and health care costs. RESULTS: Of the 5193 records identified, we reviewed 109 in full and included 11 in our study. The overall quality of the studies was moderate to low. We observed mixed results for all outcomes. Compared with patients receiving usual care, fewer patients in the palliative care group had hospital admissions and fewer of those with cancer had planned hospital admissions. In contrast, no effects were observed regarding the overall number of hospital, emergency or outpatient admissions. Conflicting results were observed with regards to critical care utilization. Studies showed a trend toward shorter lengths of stay in hospital in the palliative care group. However, a single study that also considered inpatient time in hospice facilities found an increase in total length of stay, which showed a shift in the setting of health care utilization. We observed no conclusive trend in the effects on cost. INTERPRETATION: Evidence suggests that pediatric palliative care programs may result in a shift of utilization to other health care settings beyond hospital care. These settings should be considered when measuring resource utilization and costs.
Identifier
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<a href="http://doi.org/10.9778/cmajo.20140044" target="_blank" rel="noreferrer">10.9778/cmajo.20140044</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).
2015
Chavoshi N
Cmaj Open
Conte T
Mitton C
Siden H
Trenaman LM
-
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
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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When parents say "more" and health care professionals say "enough".
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Davies D; Mack C
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403274/" target="_blank" rel="noreferrer">PMC4403274</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).
2015
Davies D
Mack C
Paediatrics & Child 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
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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
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Title
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Case 1: A primary care provider enhances family support in perinatal palliative care.
Publisher
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Paediatrics & Child Health
Date
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2015
Creator
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Chamberlain C; Spicer S; Curiel Kathryn daSilva
Description
An account of the resource
A healthy 42-year-old G10 P7 mother with seven healthy children with the same partner conceived naturally while taking prenatal folic acid supplementation. She was referred to a perinatal assessment team at a tertiary hospital following a 21-week ultrasound showing extensive lumbosacral meningomyelocele and Chiari II malformation. Serial ultrasounds documented progressive polyhydramnios, massive ventriculomegaly, poorly developed mantle, 120° kyphoscoliosis and club feet. The referring family physician and obstetrics, genetics, neonatology, neurosurgery and palliative care were involved throughout the pregnancy. The consultants’ impressions of profound neurological damage led to counselling about options for termination of pregnancy, comfort measures alone, or resuscitative care and re-evaluation after delivery. The parents hoped for a live-born infant and time to hold her while alive. Following extensive discussions with their family physician, they chose a trial of resuscitative care with immediate neonatology assessment. A scheduled Caesarean section under spinal anesthetic, preceded by ultrasound-guided ventriculocentesis to facilitate delivery, was performed at 37 weeks’ gestation. Resuscitation included intubation and administration of intravenous fluid. The neonatologist confirmed a large open lumbosacral meningomyelocele. The baby became increasingly hypoxic despite attempts to optimize ventilation and, in discussion with the parents, the neonatologist discontinued mechanical ventilation while the baby was held in her father’s arms. Death occurred at 2 h of age.
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403278/" target="_blank" rel="noreferrer">PMC4403278</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).
2015
Chamberlain C
Curiel Kathryn daSilva
Paediatrics & Child Health
Spicer S
-
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
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Case 2: A 10-year-old boy with leg pain and swelling.
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Paediatrics & Child Health
Date
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2015
Creator
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Doherty M; Wheaton L; Vadeboncoeur C
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403279/" target="_blank" rel="noreferrer">PMC4403279</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).
2015
Doherty M
Paediatrics & Child Health
Vadeboncoeur C
Wheaton L
-
Dublin Core
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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
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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Introducing a lexicon of terms for paediatric palliative care.
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
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Spicer S; Macdonald ME; Davies D; Vadeboncoeur C; Siden H
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403281/" target="_blank" rel="noreferrer">PMC4403281</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).
2015
Davies D
Macdonald ME
Paediatrics & Child Health
Siden H
Spicer S
Vadeboncoeur C
-
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
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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Challenging neurological symptoms in paediatric palliative care: An approach to symptom evaluation and management in children with neurological impairment.
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
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Agitation; Dystonia; Irritability; Paediatrics; Palliative Care; Spasticity
Creator
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Rasmussen LA; Gregoire Marie-Claude
Description
An account of the resource
Neurological symptoms are very common in children with life-limiting conditions and are challenging in terms of burden of illness. Moreover, neurological symptoms can significantly impact the child's quality of life and contribute to distress among parents, families, caregivers and health care providers. Knowing how to manage and alleviated these symptoms is essential for providing good palliative care. In the present article, the more common neurological symptoms of agitation/irritability, spasticity and dystonia will be reviewed. The aim of the present brief review is to provide a basic approach to both the identification and treatment of these neurological symptoms. A medication table is provided for quick reference. A brief commentary and guidance for the management of pain are also incorporated, with reference to further literature sources.
Identifier
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403283/" target="_blank" rel="noreferrer">PMC4403283</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).
2015
Agitation
Dystonia
Gregoire Marie-Claude
Irritability
Paediatrics
Paediatrics & Child Health
Palliative Care
Rasmussen LA
Spasticity
-
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PedPalASCNet Member Publications
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Citation List Month
July 2017 List
Notes
<p>Rahimzadeh, Vasiliki<br/>Bartlett, Gillian<br/>Longo, Cristina<br/>Crimi, Laura<br/>Macdonald, Mary Ellen<br/>Jabado, Nada<br/>Ells, Carolyn<br/>Canadian Institutes of Health Research/Canada<br/>Journal Article<br/>Research Support, Non-U.S. Gov't<br/>England<br/>BMC Palliat Care. 2015 Oct 16;14:50. doi: 10.1186/s12904-015-0048-5.</p>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Promoting An Ethic Of Engagement In Pediatric Palliative Care Research
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Bmc Palliative Care
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2015
Subject
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Research; Humans; Palliative Care/methods; Patient Participation/methods; Pediatric Nursing/methods; Quality Of Life
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Rahimzadeh V; Bartlett G; Longo C; Crimi L; Macdonald ME; Jabado N; Ells C
Description
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BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have resulted in tremendous progress for improving clinical outcomes among children and adolescents diagnosed with a life-threatening illness. Less attention has been paid, however, to engaging this patient population directly in studies aimed at optimizing health-related quality of life in PPC. Though not restricted to care at the end of life, PPC--and by extension PPC research--is in part dependent on recognizing the social complexities of death and dying and where health-related quality of life is a fundamental element. To explore these complexities in depth requires partnership with terminally ill children and adolescents, and acknowledgement of their active social and moral agency in research. DISCUSSION: Principles of pediatric research ethics, theoretical tenets of the "new sociology of the child(hood)," and human rights codified in the United Nations Convention on the Rights of the Child (UNCRC) underpin the position that a more engagement-centered approach is needed in PPC research. The ethics, sociologies and human rights of engagement will each be discussed as they relate to research with terminally ill children and adolescents in PPC. Qualitative method(ologies) presented in this paper, such as deliberative stakeholder consultations and phenomenology of practice can serve as meaningful vehicles for achieving i) participation among terminally ill children and adolescents; ii) evidence-bases for PPC best practices; and iii) fulfillment of research ethics principles. CONCLUSION: PPC research based on direct engagement with PPC patients better reflects their unique expertise and social epistemologies of terminal illness. Such an approach to research would strengthen both the ethical and methodological soundness of HRQoL inquiry in PPC.
Identifier
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10.1186/s12904-015-0048-5
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
Bartlett G
BMC Palliative Care
Crimi L
Ells C
Humans
Jabado N
July 2017 List
Longo C
Macdonald ME
Palliative Care/methods
Patient Participation/methods
Pediatric Nursing/methods
Quality Of Life
Rahimzadeh V
Research