2
40
241
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<a href="http://doi.org/10.1002/cnr2.1551" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cnr2.1551</a>
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Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer
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Cancer Reports
Date
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2021
Subject
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pediatrics; cancer; symptom control; cannabidiol; cannabis; tetrahydrocannabinol
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Oberoi S; Protudjer JLP; Rapoport A; Rassekh SR; Crooks B; Siden H; Decker K; Ananth P; Chapman S; Balneaves LG; Vanan MI; Kelly LE
Description
An account of the resource
Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for medical purposes among children with cancer. Methods A self-administered, voluntary, cross-sectional, deidentified online survey was sent to all pediatric oncologists and palliative care physicians in Canada between June and August 2020. Survey domains included education, knowledge, and concerns about cannabis, views on its effectiveness, and the importance of cannabis-related research. Data were analyzed using descriptive statistics. Results In total, 122/259 (47.1%) physicians completed the survey. Although 62.2% of the physicians completed some form of training about medical cannabis, nearly all (95.8%) desired to know more about the dosing, side effects, and safety of cannabis. Physicians identified a potential role of cannabis in the management of nausea and vomiting (85.7%), chronic pain (72.3%), cachexia/poor appetite (67.2%), and anxiety or depression (42.9%). Only four (0.3%) physicians recognized cannabis to be potentially useful as an anticancer agent. Nearly all physicians reported that cannabis-related research for symptom relief is essential (91.5%) in pediatric oncology, whereas 51.7% expressed that future studies are necessary to determine the anticancer effects of cannabis. Conclusions Our findings indicate that most pediatric oncologists and palliative care physicians recognize a potential role for cannabis in symptom control in children with cancer. Well-conducted studies are required to create evidence for cannabis use and promote shared decision making with pediatric oncology patients and their caregivers.
Identifier
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<a href="http://doi.org/10.1002/cnr2.1551" target="_blank" rel="noreferrer noopener">10.1002/cnr2.1551</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Ananth P
Balneaves LG
Cancer
Cancer Reports
Cannabidiol
Cannabis
Chapman S
Crooks B
December 2021 List
Decker K
Kelly LE
Medicinal Cannabis
Oberoi S
Pediatrics
Protudjer JLP
Rapoport A
Rassekh SR
Siden H
Symptom Control
tetrahydrocannabinol
Vanan MI
-
Dublin Core
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December 2021 List
Text
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<a href="http://doi.org/10.1503/cmaj.202169" target="_blank" rel="noreferrer noopener">http://doi.org/10.1503/cmaj.202169</a>
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Improving the regulation of medical cannabis in Canada to better serve pediatric patients
Publisher
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CMAJ
Date
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2021
Subject
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Canada; Cannabis; Drug regulation; Health policy; Pediatrics
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Huntsman RJ; Kelly LE; Alcorn J; Appendino JP; Bélanger RE; Crooks B; Finkelstein Y; Gilpin A; Lewis E; Litalien C; Jacobs J; Moore-Hepburn C; Oberlander T; Rassekh SR; Repetski AE; Rieder MJ; Shackelford A; Siden H; Szafron M; ‘t Jong GW; Vaillancourt R
Description
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Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware of evidence that suggests medical cannabis provides
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<a href="http://doi.org/10.1503/cmaj.202169" target="_blank" rel="noreferrer noopener">10.1503/cmaj.202169</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).
‘t Jong GW
2021
Alcorn J
Appendino JP
Bélanger RE
Canada
Cannabis
CMAJ
Crooks B
December 2021 List
Drug regulation
Finkelstein Y
Gilpin A
Health Policy
Huntsman RJ
Jacobs J
Kelly LE
Lewis E
Litalien C
Moore-Hepburn C
Oberlander T
Pediatrics
Rassekh SR
Repetski AE
Rieder MJ
Shackelford A
Siden H
Szafron M
Vaillancourt R
-
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Title
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October 2021 List
Text
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October 2021 List
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<a href="http://doi.org/10.1080/14656566.2021.1965574" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/14656566.2021.1965574</a>
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Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period
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Expert Opinion on Pharmacotherapy
Date
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2021
Subject
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palliative care; symptom management; life-limiting condition; perinatal palliative care; Comfort care; medications
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Veldhuijzen van Zanten S; Ferretti E; MacLean G; Daboval T; Lauzon L; Reuvers E; Vadeboncoeur C
Description
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INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an approach that includes the standardized management of end-of-life symptoms that are anticipated around the time of birth. AREAS COVERED: A need was identified to develop medication orders for the initial pharmacological management of symptoms at end-of-life for infants with life-limiting conditions intended for use outside of an intensive care setting. The choice of medications was based on a review of the literature, discussion with content experts and guided by their ease of use, accessibility and noninvasive route of delivery. The recommendations can be used as a guide for the initial management of common symptoms encountered in perinatal palliative care. EXPERT OPINION: There are studies looking at many qualitative aspects of perinatal palliative care including perceptions of care, decision-making, and bereavement; however, few specifically focus on symptom management in the delivery room and postpartum ward settings. There is a need for standardization of the medical management of infants born with life-limiting conditions whose parents choose to pursue palliative care.
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<a href="http://doi.org/10.1080/14656566.2021.1965574" target="_blank" rel="noreferrer noopener">10.1080/14656566.2021.1965574</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Comfort Care
Daboval T
Expert Opinion on Pharmacotherapy
Ferretti E
Lauzon L
Life-limiting Condition
MacLean G
medications
October 2021 List
Palliative Care
Perinatal Palliative Care
Reuvers E
Symptom Management
Vadeboncoeur C
Veldhuijzen van Zanten S
-
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<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/cch.12909</a>
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Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
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Child
Date
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2021
Subject
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adolescent; cannabis; children; anxiety; autism spectrum disorder; behaviour; communication; hyperactivity
Creator
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Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Description
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Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. Objective The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. Methods Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0–18 years old and (4) any study design (published or unpublished). Results We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. Conclusions Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
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<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Adolescent
anxiety
Autism spectrum disorder
behaviour
Cannabis
Child
Children
Communication
Fletcher S
Huh L
hyperactivity
Ip A
Oberlander TF
October 2021 List
Pawliuk C
Rassekh SR
Siden H
-
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September 2021 List
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September 2021 List
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<a href="http://doi.org/10.1002/cncr.33763" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/cncr.33763</a>
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Children and adolescents with hematologic cancers deserve better end-of-life care
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Cancer.
Date
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2021
Subject
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children; adolescents; palliative care; cancer; end of life; administrative data; hematologic; high intensity
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Rapoport A; Gupta S
Description
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Children and adolescents with hematologic malignancies consistently experience higher rates of aggressive care at the end of life. Clinicians and researchers must now turn their attention to reducing this disparity.
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<a href="http://doi.org/10.1002/cncr.33763" target="_blank" rel="noreferrer noopener">10.1002/cncr.33763</a>
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2021
Administrative data
Adolescents
Cancer
Cancer.
Children
End Of Life
Gupta S
hematologic
high intensity
Palliative Care
Rapoport A
September 2021 List
-
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September 2021 List
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September 2021 List
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.026" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2021.07.026</a>
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The Parental Experience of Caring for A Child with Pain and Irritability of Unknown Origin
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Journal of Pain and Symptom Management
Date
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2021
Subject
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pediatrics; pain; severe neurological impairment; irritability; qualitative inquiry
Creator
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Rizakos S; Parmar A; Siden H; Orkin J
Description
An account of the resource
Background and Objective : Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental caregivers and families. The primary objective of this study was to understand the parental caregiver experience of caring for a child with SNI who experiences persistent PIUO. Methods : We conducted a qualitative study using semi-structured interviews to explore the experience of parental caregivers of children with SNI. Interview guide questions focused on exploring pain behaviours, the diagnostic process, pharmacological and non-pharmacological management, healthcare-team support, discussion surrounding irritability, and family impact. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed by two independent reviewers using thematic analysis. Results : Fifteen parental caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed three major themes: 1) Variations in Clinical Care for PIUO; 2) The Experience and Challenges of Living with PIUO); 3) Managing the Impact of PIUO on Parental Well Being. Interviews demonstrated that parent and child can be viewed as a dyad, in which the child's experience is inherently linked to the parental experience. Conclusion : Parental caregivers described caring for a child with persistent PIUO as physically and emotionally exhausting, and negatively impacting family quality of life. Interviews highlighted avenues of future exploration for clinical care, including both enhanced management pathways for children and supportive resources for education and coping for parents.
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.07.026" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.07.026</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Irritability
Journal of Pain and Symptom Management
Orkin J
Pain
Parmar A
Pediatrics
PIUO
Qualitative Inquiry
Rizakos S
September 2021 List
severe neurological impairment
Siden H
-
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August 2021 List
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August 2021 List
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<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/13674935211026113</a>
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Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
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Journal of Child Health Care
Date
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2021
Subject
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children; critical illness; scoping review; Sibling(s)
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Tay J; Widger K; Stremler R
Description
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Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research examining healthy siblings' experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child's illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings' experiences and focus on a wider variety of life-threatening conditions.
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<a href="http://doi.org/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">10.1177/13674935211026113</a>
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2021
August 2021 List
Children
Critical Illness
Journal Of Child Health Care
Scoping review
Sibling(s)
Stremler R
Tay J
Widger K
-
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August 2021 List
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August 2021 List
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<a href="http://doi.org/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s10880-021-09797-x</a>
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Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer
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Journal of Clinical Psychology in Medical Settings
Date
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2021
Subject
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Children; Adjustment; End of life; Cancer; Sibling bereavement
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Kenney AE; Tutelman PR; Fisher RS; Lipak KG; Barrera M; Gilmer MJ; Fairclough D; Akard TF; Compas BE; Davies B; Hogan NS; Vannatta K; Gerhardt CA
Description
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The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.
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<a href="http://doi.org/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">10.1007/s10880-021-09797-x</a>
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2021
Adjustment
Akard TF
August 2021 List
Barrera M
Cancer
Children
Compas BE
Davies B
End Of Life
Fairclough D
Fisher RS
Gerhardt CA
Gilmer MJ
Hogan NS
Journal Of Clinical Psychology In Medical Settings
Kenney AE
Lipak KG
sibling bereavement
Tutelman PR
Vannatta K
-
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Title
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August 2021 List
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August 2021 List
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<a href="http://doi.org/10.1093/med/9780198821311.001.0001" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/med/9780198821311.001.0001</a>
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Title
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Oxford Textbook of Palliative Care for Children
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Oxford University Press
Date
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2021
Subject
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Children; Pediatrics; Pain Management; Palliative Care
Creator
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Hain R; Goldman A; Rapoport A; Rapoport A; Meiring M
Description
An account of the resource
The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of life. The new edition of theOxford Textbook of Palliative Care for Children brings together the most up to date information, current knowledge, evidence, and developments of clinical practice in the field. The book is structured into four sections. 'Foundations of Care' describes core issues, the foundations on which paediatric palliative care is based. 'Child and Family Care' looks at different aspects of psychological, social, and cultural care for the sick child or young person, and their family.These chapters cover the time course of the illness, around the time of death and support for the bereaved family. 'Symptom Care' focuses on the uses of medication, specific symptoms, and their management. Finally, 'Delivery of Care' examines practical approaches to care in different environmentsand the needs of clinicians. Two new editors join the team from Canada and South Africa, reflecting our aims to contribute towards the development of care for children across the world, and to be a resource for both experienced clinicians and those new to the field. Comprehensive in scope, exhaustive in detail, and definitive in authority, this third edition has been thoroughly updated to cover new practices, current epidemiological data, and the evolving models that support the delivery of palliative medicine to children. This includes two new chapters, looking in detail at 'Decision Making' and 'Perinatal Care', and a new section highlighting the emerging importance of 'Palliative Care for Children in Humanitarian Crises'. This book is an essential resource for anyone who works with children worldwide.
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<a href="http://doi.org/10.1093/med/9780198821311.001.0001" target="_blank" rel="noreferrer noopener">10.1093/med/9780198821311.001.0001</a>
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2021
August 2021 List
Children
Goldman A
Hain R
Meiring M
Oxford University Press
Pain Management
Palliative Care
Pediatrics
Rapoport A
-
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July 2021 List
Text
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July 2021 List
URL Address
<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">http://doi.org/10.9778/cmajo.20200212</a>
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Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study
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CMAJ Open
Date
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2021
Subject
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Epilepsy; Family Attitudes; medical cannabis; oncology; pain management; parent experiences; pediatric palliative care
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Gibbard M; Mount D; Rassekh SR; Siden H
Description
An account of the resource
BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children's Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child's cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description. RESULTS: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality. INTERPRETATION: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.
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<a href="http://doi.org/10.9778/cmajo.20200212" target="_blank" rel="noreferrer noopener">10.9778/cmajo.20200212</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
Cmaj Open
Epilepsy
Family Attitudes
Gibbard M
July 2021 List
medical cannabis
Medicinal Cannabis
Mount D
Oncology
Pain Management
Parent Experiences
Pediatric Palliative Care
Rassekh SR
Siden H
-
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June 2021 List
Text
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June 2021 List
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<a href="http://doi.org/10.1186/s12904-020-00620-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00620-2</a>
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Transition from children's to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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adolescent; Continuity of Patient Care; life-limiting conditions; young adult
Creator
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Kerr H; Widger K; Cullen-Dean G; Price J; O'Halloran P
Description
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BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. METHODS: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. RESULTS: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making. CONCLUSIONS: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
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<a href="http://doi.org/10.1186/s12904-020-00620-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00620-2</a>
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2020
Adolescent
BMC Palliative Care
Continuity Of Patient Care
Cullen-Dean G
June 2021 List
Kerr H
Life-limiting Conditions
O'Halloran P
Price J
Widger K
Young Adult
-
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Title
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April 2021 List
Text
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April 2021 List
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<a href="http://doi.org/10.1186/s12904-020-00703-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-020-00703-0</a>
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Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach
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BMC Palliative Care
Date
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2021
Subject
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Pediatric palliative care; Pediatric hospice care; Home-based care; Experience with care; Instrument development
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Boyden JY; Feudtner C; Deatrick JA; Widger K; LaRagione G; Lord B; Ersek M
Description
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Background: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Method(s): We developed and conducted a preliminary evaluation of a family-reported measure of PPHC@Home experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and PPHC@Home outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioiritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4). Result(s): Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home (EXPERIENCE@Home) Measure contains 22 of the most highly-valued items for evaluating PPHC@Home. These items include "The care team treats my child's physical symptoms so that my child has as good a quality of life as possible", "I have regular access to on-call services from our care team", and "The nurses have the knowledge, skills, and experience to support my child's palliative or hospice care at home." Conclusion(s): The EXPERIENCE@Home Measure is the first known to specifically measure family-reported experiences with PPHC@Home in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with PPHC@Home teams. Copyright © 2021, The Author(s).
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<a href="http://doi.org/10.1186/s12904-020-00703-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00703-0</a>
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2021
April 2021 List
BMC Palliative Care
Boyden JY
Deatrick JA
Ersek M
Experience with care
Feudtner C
Home-based Care
instrument development
LaRagione G
Lord B
Pediatric Hospice Care
Pediatric Palliative Care
Widger K
-
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February 2021 List
Text
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February 2021 List
URL Address
<a href="http://doi.org/10.1089/jpm.2020.0496" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2020.0496</a>
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Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers
Publisher
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Journal of Palliative Medicine
Date
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2020
Subject
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pediatric palliative care; continuing professional development; distance education; Project ECHO
Creator
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Lalloo C; Osei-Twum J; Rapoport A; Vadeboncoeur C; Weingarten K; Veldhuijzen van Zanten S; Widger K; Stinson J
Description
An account of the resource
Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice. Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.
Identifier
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<a href="http://doi.org/10.1089/jpm.2020.0496" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0496</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
continuing professional development
distance education
February 2021 List
Journal of Palliative Medicine
Lalloo C
Osei-Twum J
Pediatric Palliative Care
Project ECHO
Rapoport A
Stinson J
Vadeboncoeur C
Veldhuijzen van Zanten S
Weingarten K
Widger K
-
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Title
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January 2021 List
Text
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January 2021 List
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<a href="http://doi.org/10.1177/1178632920972655" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1178632920972655</a>
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Title
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Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
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Health Services Insights
Date
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2020
Subject
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child; Family caregivers; Informal caregivers; needs assessment; pediatric; self report; Surveys and questionnaires
Creator
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Stochitoiu IA; Vadeboncoeur C
Description
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Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form. Additional feedback was sought inquiring about the appropriateness of questions and missing information relevant to the pediatric setting. All participants reported the assessment captured important information across multiple domains. Additional questions surrounding extra costs, home and school supports, as well as direct impacts of caregiving activities on pain and relationships were identified as important adaptations. The most common unmet needs in carers and care recipients were episodic relief from caregiving (n=17) and housing adaptation (n=17), respectively. Overall, a comprehensive assessment form is feasible in identifying the diverse needs of family carers of children. Future research should focus on using pediatric specific interRAI tools to guide improvements in policy and practice that can address unmet needs.
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<a href="http://doi.org/10.1177/1178632920972655" target="_blank" rel="noreferrer noopener">10.1177/1178632920972655</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Child
Family Caregivers
Health Services Insights
Informal caregivers
January 2021 List
Needs Assessment
Pediatric
Self Report
Stochitoiu IA
Surveys And Questionnaires
Vadeboncoeur C
-
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Title
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December 2020 List
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December 2020 List
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<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/jgc4.1353</a>
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Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences
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Journal of Genetic Counseling
Date
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2020
Subject
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Decisional regret; genetic counseling; genome-wide sequencing; lived experience; neonates
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Aldridge CE; Osiovich H; Siden H; Elliott AM
Description
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Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a qualitative study, using an interpretive description framework and thematic analysis, to gain further insight into parents’ perceptions of the value and utility of GWS for their infant. We sought to explore whether parents’ perceptions differ if their child received a diagnosis or not, and whether their child is living or deceased. Semi-structured, telephone interviews were conducted with parents of infants who had rapid exome sequencing while in the neonatal intensive care unit at BC Women's Hospital in Vancouver, Canada. Interviews addressed perceived benefits and harms of GWS and included an evaluation of decisional regret. Parents of 27 probands were approached and 14 (52%; 13 mothers and 1 father) participated in interviews. On average, 26 months had elapsed from the time of results to the interview. Six themes were identified. Firstly, parents had a positive regard for GWS. The results of GWS helped provide context for their child's admission to the NICU, and all parents experienced relief following receiving the results. A diagnosis by GWS enabled parents to picture the future, form connections with other parents, and coordinate their child's care. Lastly, some parents experienced discomfort with the concept of a genetic diagnosis, and interestingly felt lack of a genomic diagnosis indicated a reduced severity of their infant's condition. Decisional regret post-results was found to be low. Our results highlight how parents cope with the results of GWS and suggest that a genetic counselor can have an important role in helping families understand and adjust to these results in the neonatal intensive care unit.
Identifier
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<a href="http://doi.org/10.1002/jgc4.1353" target="_blank" rel="noreferrer noopener">10.1002/jgc4.1353</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Aldridge CE
December 2020 List
Decisional regret
Elliott AM
Genetic Counseling
genome-wide sequencing
Journal of Genetic Counseling
lived experience
Neonates
Osiovich H
Siden H
-
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May 2019 List
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May 2019 List
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<a href="http://doi.org/10.1111/dmcn.14180" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14180</a>
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A novel classification system for research reporting in rare and progressive genetic conditions
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Developmental Medicine & Child Neurology
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2019
Creator
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van Karnebeek CDM; Beumer D; Pawliuk C; Goez Helly; Mostafavi S; Andrews G; Steele R; Siden H
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<a href="http://doi.org/10.1111/dmcn.14180" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14180</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).
Description
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Aim To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. Method A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system. Overall percentage agreement and agreement above chance were calculated using Fleiss’ kappa (κ). Results Eleven physicians completed the first Delphi, with an overall agreement of 76.4%, the κ value was 0.57 (95% confidence interval 0.51–0.63), indicating moderate agreement (0.41–0.60) above chance. Based on the first survey several categories were described in more detail. The second survey confirmed a classification system with 12 categories, with an overall percentage agreement among the participants of 82.6%. The overall mean κ value was 0.71 (95% confidence interval 0.65–0.77), indicating substantial agreement (0.61–0.80). Interpretation Our new system was useful in categorizing a broad range of rare childhood diseases and may be applicable to other rare disease studies; further validation in larger cohorts is required. What this paper adds This novel 12-category classification system can be used in research reporting in rare and progressive genetic conditions.
2019
Andrews G
Beumer D
Charting the territory
Developmental Medicine & Child Neurology
Goez Helly
May 2019 List
Mostafavi S
Pawliuk C
Siden H
Steele R
van Karnebeek CDM
-
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May 2019 List
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May 2019 List
URL Address
<a href="http://doi.org/10.1080/07481187.2018.1526829" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/07481187.2018.1526829</a>
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The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital
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Death Studies
Date
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2019
Creator
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Muskat B; Greenblatt A; Anthony S; Beaune L; Hubley P; Newman C; Brownstone D; Rapoport A
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<a href="http://doi.org/10.1080/07481187.2018.1526829" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1526829</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).
Description
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This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and personal impacts of their work and employed various coping strategies under each of these domains. The acute-care setting was found to create unique challenges in providing end-of-life care. Implications for policy and practice include promotion of both individual and institutional-level coping strategies and supports that meet the various needs of staff. Implications for future research include a nuanced examination of differences in experiences among nurses, social workers, and physicians.
2019
Anthony S
Beaune L
Brownstone D
Death studies
Greenblatt A
Hubley P
May 2019 List
Muskat B
Newman C
Rapoport A
-
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Title
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April 2019 List
Text
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April 2019 List
URL Address
<a href="http://doi.org/10.1016/j.pec.2019.02.011" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1016/j.pec.2019.02.011</a>
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Impact of specialized pediatric palliative care programs on communication and decision-making
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Patient Education & Counseling
Date
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2019
Subject
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Children; Communication; Pediatrics; Counseling; Palliative care; Decision-making; Specialized pediatric palliative care program
Creator
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Streuli JC; Widger K; Medeiros C; Zuniga-Villanueva G; Trenholm M
Description
An account of the resource
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018. RESULTS: We reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators. Study quality was poor in 58% of included papers. SPPC programs improved communication and decision-making between families and healthcare professionals (HCPs), within and between families, and among HCPs. CONCLUSION: SPPC programs generally support and improve communication and decision-making for children with life-threatening conditions, their families and associated HCPs. Families referred to an SPPC program had more discussions with HCPs on a broad variety of topics. However, data on communication with children, siblings, and other family members was scarce and of poor quality. PRACTICE IMPLICATIONS: More research on SPPC program efficacy is needed from the perspective of the ill child, as well as about barriers to end-of-life discussions and the specific aspects of SPPC programs responsible for improving outcomes.
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<a href="http://doi.org/10.1016/j.pec.2019.02.011" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2019.02.011</a>
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2019
April 2019 List
Children
Communication
Counseling
Decision-making
Medeiros C
Palliative Care
Patient Education & Counseling
Pediatrics
Specialized pediatric palliative care program
Streuli JC
Trenholm M
Widger K
Zuniga-Villanueva G
-
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Title
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April 2019 List
Text
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April 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2010.0315" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1089/jpm.2010.0315</a>
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Perceptions of discrimination among Mexican American families 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
2011
Subject
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Middle Aged; Male; Young Adult; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Critical Illness; California; Mexican Americans/px [Psychology]; Prejudice
Creator
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Davies B; Larson J; Contro N; Cabrera AP
Description
An account of the resource
This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided the overall study. Content analysis of interviews with 13 participants from 11 families who were recruited from two children's hospitals in Northern California resulted in numerous codes and revealed that participants perceived discrimination when they were treated differently from other, usually white, families. They believed they were treated differently because they were Mexican, because they were poor, because of language barriers, or because of their physical appearance.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2010.0315" target="_blank" rel="noreferrer noopener">10.1089/jpm.2010.0315</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
Adolescent
Adult
April 2019 List
Cabrera AP
California
Child
Child Preschool
Contro N
Critical Illness
Davies B
Female
Humans
Infant
Journal of Palliative Medicine
Larson J
Male
Mexican Americans/px [Psychology]
Middle Aged
Prejudice
Retrospective Studies
Young Adult
-
Dublin Core
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Title
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February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1089/jpm.2018.0420" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1089/jpm.2018.0420</a>
Dublin Core
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Title
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Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
palliative care; pediatrics; quality indicators; review literature
Creator
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Widger K; Medeiros C; Trenholm M; Zuniga-Villanueva G; Streuli J C
Description
An account of the resource
BACKGROUND: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system. OBJECTIVE: To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs. DESIGN: The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090). DATE SOURCES: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish. RESULTS: Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children's perspectives in assessing indicators. CONCLUSIONS: Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1089/jpm.2018.0420" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0420</a>
2018
February 2019 List
Journal of Palliative Medicine
Medeiros C
Palliative Care
Pediatrics
Quality Indicators
review literature
Streuli J C
Trenholm M
Widger K
Zuniga-Villanueva G
-
Dublin Core
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Title
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February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.416</a>
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Title
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Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
pain; death; dyspnea; major clinical study; neoplasm; hospice; seizure; conference abstract; human; child; female; male; diagnosis; terminal care; patient care
Creator
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Ross S; Daffern K; Widger K; Rapoport A; Salminen R
Description
An account of the resource
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.416</a>
2018
Child
conference abstract
Daffern K
Death
Diagnosis
Dyspnea
February 2019 List
Female
Hospice
Human
Journal of Pain and Symptom Management
Major Clinical Study
Male
Neoplasm
Pain
Patient Care
Rapoport A
Ross S
Salminen R
Seizure
Terminal Care
Widger K
-
Dublin Core
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Title
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February 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1016/j.jpainsymman.2018.10.042</a>
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Title
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Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
death; grief; semi structured interview; pediatrics; palliative therapy; student; personal experience; resident; medical education; data analysis; genetic transcription; conference abstract; human; child; controlled study; perception; guilt; qualitative research; phenomenology; chronic patient; rotation
Creator
An entity primarily responsible for making the resource
Johnson A; Siden H; Charles G
Description
An account of the resource
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice in palliative care have all been investigated within recent studies. However, the current body of literature in this area is limited and under-developed as it has neglected the human experience of caring for children with life-limiting diseases. The primary objective of this study is to widen the understanding of pediatric residents who have completed training in pediatric palliative care.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.042</a>
2018
Charles G
Child
Chronic Patient
conference abstract
Controlled Study
Data Analysis
Death
February 2019 List
genetic transcription
Grief
Guilt
Human
Johnson A
Journal of Pain and Symptom Management
Medical Education
Palliative Therapy
Pediatrics
Perception
Personal Experience
Phenomenology
Qualitative Research
Resident
Rotation
Semi Structured Interview
Siden H
Student
-
Dublin Core
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Title
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November 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
November 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</a>
Dublin Core
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Title
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National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
cancer palliative therapy;childhood cancer;medical education;Pediatrics;Advance care planning;article;Canada;Child;clinical practice;health care quality;health practitioner;Human;professional knowledge;quality of life;self care;tertiary care center;total quality management
Creator
An entity primarily responsible for making the resource
Widger K;Wolfe J;Friedrichsdorf S;Pole JD;Brennenstuhl S;Liben S;Greenberg M;Bouffet E;Siden H;Husain A;Whitlock JA;Leyden M;Rapoport A
Description
An account of the resource
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</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).
2018
Advance Care Planning
Article
Bouffet E
Brennenstuhl S
Canada
Cancer Palliative Therapy
Child
Childhood Cancer
Clinical Practice
Friedrichsdorf S
Greenberg M
Health Care Quality
health practitioner
Human
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
Medical Education
November 2018 List
Pediatrics
Pole JD
professional knowledge
Quality Of Life
Rapoport A
Self Care
Siden H
tertiary care center
Total Quality Management
Whitlock JA
Widger K
Wolfe J
-
Dublin Core
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Title
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September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1136/medethics-2018-104896" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/medethics-2018-104896</a>
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Title
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Medical Assistance in Dying at a paediatric hospital
Publisher
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Journal of Medical Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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DeMichelis C; Zlotnik SR; Rapoport A
Description
An account of the resource
This article explores the ethical challenges of providing Medical Assistance in Dying (MAID) in a paediatric setting. More specifically, we focus on the theoretical questions that came to light when we were asked to develop a policy for responding to MAID requests at our tertiary paediatric institution. We illuminate a central point of conceptual confusion about the nature of MAID that emerges at the level of practice, and explore the various entailments for clinicians and patients that would flow from different understandings. Finally, we consider the ethical challenges of building policy on what is still an extremely controversial social practice. While MAID is currently available to capable patients in Canada who are 18 years or older—a small but important subsection of the population our hospital serves—we write our policy with an eye to the near future when capable young people may gain access to MAID. We propose that an opportunity exists for MAID-providing institutions to reduce social stigma surrounding this practice, but not without potentially serious consequences for practitioners and institutions themselves. Thus, this paper is intended as a road map through the still-emerging legal and ethical landscape of paediatric MAID. We offer a view of the roads taken and considered along the way, and our justifications for travelling the paths we chose. By providing a record of our in-progress thinking, we hope to stimulate wider discussion about the issues and questions encountered in this work.
Identifier
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<a href="http://doi.org/10.1136/medethics-2018-104896" target="_blank" rel="noreferrer noopener">10.1136/medethics-2018-104896</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
2018
DeMichelis C
Journal of Medical Ethics
October 2018 List
Rapoport A
September 2018 List
Zlotnik SR
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jpm.2017.0532</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
National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
An entity primarily responsible for making the resource
Widger K; Wolfe J; Friedrichsdorf S; Pole JD; Brennenstuhl S; Liben S; Greenberg M; Bouffet E; Siden H; Husain A; Whitlock JA; Leyden M; Rapoport A
Description
An account of the resource
Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC?-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. Design: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3?6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records. Results: Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI]?=?1.17?2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI?=?1.06?2.11), after adjusting for background variables. Conclusion: While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2017.0532" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0532</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.
2018
Bouffet E
Brennenstuhl S
Friedrichsdorf S
Greenberg M
Husain A
Journal of Palliative Medicine
Leyden M
Liben S
October 2018 List
Pole JD
Rapoport A
September 2018 List
Siden H
Whitlock JA
Widger K
Wolfe J
-
Dublin Core
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Title
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September 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2018 List
URL Address
<a href="http://doi.org/10.1037/spq0000253" target="_blank" rel="noreferrer noopener">http://doi.org/10.1037/spq0000253</a>
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Title
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Grief and growth in bereaved siblings: Interactions between different sources of social support
Publisher
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School Psychology Quarterly
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Bereavement; Grief; Interpersonal Interaction; Siblings; Social Support
Creator
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Howard SKM; Russell C; Keim M; Barrera Maru; Gilmer Mary Jo; Foster AT; Compas BE; Fairclough DL; Davies B; Hogan Nancy; Young-Saleme T; Vannatta K; Gerhardt CA
Description
An account of the resource
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3–12 months after a child’s death. Bereaved siblings were 8–18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record (c) 2018 APA, all rights reserved) Impact and Implications—This study suggests that school-based social support may enhance the positive effect of parental support for bereaved siblings and, in the case of peer support, compensate for low parental support. Thus, bereaved siblings may benefit from social support from teachers and close friends across ages, with adolescents in middle/high school particularly benefitting from social support from peers and close friends. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Identifier
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<a href="http://doi.org/10.1037/spq0000253" target="_blank" rel="noreferrer noopener">10.1037/spq0000253</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
2018
Barrera Maru
Bereavement
Compas BE
Davies B
Fairclough DL
Foster AT
Gerhardt CA
Gilmer Mary Jo
Grief
Hogan Nancy
Howard SKM
Interpersonal Interaction
Keim M
October 2018 List
Russell C
School Psychology Quarterly
September 2018 List
Siblings
Social Support
Vannatta K
Young-Saleme 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
August 2018 List
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).
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 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">http://doi.org/10.1542/peds.2017-3417</a>
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Title
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Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
Creator
An entity primarily responsible for making the resource
Vadeboncoeur C; McHardy M
Description
An account of the resource
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</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).
2018
August 2018 List
Child
Clinical
Connective Tissue Diseases Diagnosis
Connective Tissue Diseases Familial and Genetic In Infancy and Childhood
Connective Tissue Diseases Symptoms
Connective Tissue Diseases Therapy In Infancy and Childhood
Decision Making
Dyspnea Drug Therapy
Face Pathology
Family Education
Fibrosis
Health Education
Intellectual Disability
Intensive Care Units
Male
McHardy M
Morphine Therapeutic Use
Muscle
Mutation
Pain Management
Palliative Care
Parental Attitudes
Pediatric
Pediatric Care
Pediatrics
Referral And Consultation
Skeletal Abnormalities
Vadeboncoeur C
-
Dublin Core
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August 2018 List
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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).
Text
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Citation List Month
August 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pedn.2017.02.031" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.pedn.2017.02.031</a>
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Title
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Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care
Publisher
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Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Humans; Professional-Family Relations; Palliative Care/px [Psychology]; Nursing Staff; Child; Female; Male; Nursing Methodology Research; Qualitative Research; Nursing; Palliative Care/mt [Methods]; Nurse-Patient Relations; Nursing Staff; Hospital/px [Psychology]; Critical Care Nursing/mt [Methods]; Nurse's Role/px [Psychology]; Hospital/og [Organization & Administration]; Philosophy
Creator
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Erikson A; Davies B
Description
An account of the resource
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide., RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally. When skillful in both aspects, nurses were satisfied that they provided high-quality, family-centered care to children and families within a clearly defined therapeutic relationship. At times, tension existed between these two aspects and nurses attempted to mitigate the tension. Unsuccessful mitigation attempts led to compromised integrity characterized by specific behavioral and emotional indicators. Successfully mitigating the tension with strategies that prioritized their own needs and healing, nurses eventually restored integrity. Maintaining integrity involved a continuous effort to preserve completeness of both oneself and one's nursing practice., CONCLUSIONS: Study findings provide a theoretical conceptualization to describe the process nurses use in navigating boundaries and contribute to an understanding for how this specialized area of care impacts health care providers., PRACTICE IMPLICATIONS: Work environments can better address the challenges of navigating boundaries through offering resources and support for nurses' emotional responses to caring for seriously ill children. Future research can further refine and expand the theoretical conceptualization of maintaining integrity presented in this paper and its potential applicability to other nursing specialties.Copyright © 2017 Elsevier Inc. All rights reserved.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2017.02.031" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2017.02.031</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
August 2018 List
Child
Critical Care Nursing/mt [Methods]
Davies B
Erikson A
Female
Hospital/og [Organization & Administration]
Hospital/px [Psychology]
Humans
Journal of Pediatric Nursing
Male
Nurse-patient Relations
Nurse's Role/px [Psychology]
Nursing
Nursing Methodology Research
Nursing Staff
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Philosophy
Professional-family Relations
Qualitative Research
-
Dublin Core
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Title
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May 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
May 2018 List
URL Address
<a href="http://doi.org/http://www.mdpi.com/2227-9067/5/3/32" target="_blank" rel="noreferrer noopener">http://doi.org/http://www.mdpi.com/2227-9067/5/3/32</a>
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Title
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Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
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Nelson K; Feinstein J; Gerhardt C; Rosenberg A; Widger K; Faerber J; Feudtner C
Description
An account of the resource
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Identifier
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<a href="http://doi.org/10.3390/children5030032" target="_blank" rel="noreferrer noopener">10.3390/children5030032</a>
2018
Children
Faerber J
Feinstein J
Feudtner C
Gerhardt C
May 2018 List
Nelson K
Rosenberg A
Widger K
-
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Title
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April 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
April 2018 List
URL Address
<a href="http://doi.org/10.1007/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11060-018-2781-0</a>
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Title
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End-of-life care of children with diffuse intrinsic pontine glioma
Publisher
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Journal of Neuro-Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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Palliative care; terminal care; Child; End-of-life care; Only Child; Palliative Care; Pediatric oncology; Terminal Care; child; Diffuse intrinsic pontine glioma (DIPG); Glioma
Creator
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Hasan F; Weingarten K; Rapoport A; Bouffet E; Bartels U
Description
An account of the resource
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a "Do not resuscitate" order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.
Identifier
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<a href="http://doi.org/10.1007/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">10.1007/s11060-018-2781-0</a>
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2018
April 2018 List
Bartels U
Bouffet E
Child
Diffuse Intrinsic Pontine Glioma (DIPG)
End-of-life Care
Glioma
Hasan F
Journal of Neuro-Oncology
Only Child
Palliative Care
Pediatric Oncology
Rapoport A
Terminal Care
Weingarten K
-
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/10.1016/j.pcl.2014.04.010" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2014.04.010</a>
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Title
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Improving Quality of life in Hospitalized Children
Publisher
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Pediatric Clinics Of North America
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Children; quality of life; Hospital; Distress
Creator
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Rapoport A; Weingarten K
Description
An account of the resource
There are many ways to add to children's quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers. Yet some characteristics of the inpatient setting, including the availability of human resources and unique interventions, offer creative ways to ease distress and improve quality of life for children and their families.
2014-08
Identifier
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<a href="http://doi.org/10.1016/j.pcl.2014.04.010" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.010</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
Children
Distress
Hospital
Journal Article
Pediatric Clinics of North America
Quality Of Life
Rapoport A
Weingarten K
-
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/10.1080/15524256.2014.906375" target="_blank" rel="noreferrer">http://doi.org/10.1080/15524256.2014.906375</a>
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Title
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Poverty and pediatric palliative care: what can we do?
Publisher
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Journal of Social Work in End-of-Life & 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
Child Poverty Tool and Resource Guide; content validity; life limiting illness; Pediatric palliative care; qualitative methods; social determinants of health
Creator
An entity primarily responsible for making the resource
Beaune L; Leavens A; Muskat B; Ford-Jones L; Rapoport A; Zlotnik SR; Morinis J; Chapman LA
Description
An account of the resource
It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the socioeconomic needs of families they care for. This article describes a mixed-methods study examining the content validity and utility for health care providers of a poverty screening tool and companion resource guide for the pediatric palliative care population. The study found high relevance and validity of the tool. Significant barriers to implementing the screening tool in clinical practice were described by participants, including: concerns regarding time required, roles and responsibilities, and discomfort in asking about income. Implications for practice and suggestions for improving the tool are discussed. Screening and attention to the social determinants of health lie within the scope of practice of all health care providers. Social workers can play a leadership role in this work.
2014
Identifier
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<a href="http://doi.org/10.1080/15524256.2014.906375" target="_blank" rel="noreferrer">10.1080/15524256.2014.906375</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
The nature or genre of the resource
Journal Article
2014
Backlog
Beaune L
Chapman LA
Child Poverty Tool and Resource Guide
content validity
Ford-Jones L
Journal Article
Journal of Social Work in End-of-Life & Palliative Care
Leavens A
life limiting illness
Morinis J
Muskat B
Pediatric Palliative Care
Qualitative Methods
Rapoport A
social determinants of health
Zlotnik SR
-
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/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2013.0529</a>
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Title
A name given to the resource
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
caregivers; research participation
Creator
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Steele R; Cadell S; Siden H; Andrews GS; Smit Quosai T; Feichtinger L
Description
An account of the resource
Abstract 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.
2014-07
Identifier
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<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).
Type
The nature or genre of the resource
Journal Article
2014
Andrews GS
Backlog
Cadell S
Caregivers
Feichtinger L
Journal Article
Journal of Palliative Medicine
research participation
Siden H
Smit Quosai T
Steele R
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">http://doi.org/10.1177/1043454214555197</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
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
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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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 κ were used to evaluate the level of association between the scales. The association between RPS and the FPS-R was greater than .7 at all 3 visits; r = .96 between the scales at the first clinic visit, .97 at the second visit, and .93 at the third visit. Cohen's κ between scales was 1.0 at the first clinic visit, .95 at the second visit, and .87 at the third visit. The RPS shows excellent concurrent validity with the FPS-R in school-aged children. The next step will be to examine the psychometric properties of the RPS in preschool-aged children.
2014-11
Identifier
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<a href="http://doi.org/10.1177/1043454214555197" target="_blank" rel="noreferrer">10.1177/1043454214555197</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
The nature or genre of the resource
Journal Article
2014
Backlog
Giaschi D
Holsti L
Journal Article
Journal Of Pediatric Oncology Nursing
Mahon P
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
Backlog
URL Address
<a href="http://doi.org/10.1177/1049909114524476" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909114524476</a>
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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
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hospice; mortality; illness; life-threatening conditions
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.
2014-03
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).
Type
The nature or genre of the resource
Journal Article
2014
Backlog
Chavoshi N
Hospice
Illness
Journal Article
Life-threatening Conditions
Miller T
Mortality
Siden H
The American Journal of Hospice & Palliative 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
Backlog
URL Address
<a href="http://doi.org/10.3233/WOR-141957" target="_blank" rel="noreferrer">http://doi.org/10.3233/WOR-141957</a>
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Title
A name given to the resource
Excluding parental grief: A critical discourse analysis of bereavement accommodation in Canadian labour standards
Publisher
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Work (reading, Mass.)
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Macdonald ME; Kennedy K; Moll S; Pineda C; Mitchell LM; Stephenson PH; Cadell S
Description
An account of the resource
BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect upon the ways labour policies and practices respond to parental bereavement.METHODS: Critical discourse analysis was used to examine labour policies and practices related to employment leave for bereaved parents in Canada. Results were compared to international labour standards.RESULTS: Universally, employment policies provide only for the practical issues of bereavement. Commonly, leave is three days, unpaid, and meant to enable ceremonial obligations. Policies do not acknowledge the long-term suffering caused by grief or the variable intensity of different kinds of loss. Managerial, moral, normative and neoliberal values embedded in these policies efface the intensely personal experience of grief, thereby leaving employees at risk for serious health and workplace safety issues.CONCLUSIONS: Bereavement leave currently understands grief as a generic, time-limited state with instrumental tasks and ceremonial obligations. In contrast, research characterizes responses to child loss as intense, highly personal experiences for which healing and recovery can take years. This disconnect is especially problematic when viewed through the lens of employee wellbeing, reintegration and workplace productivity.
2014-09
Identifier
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<a href="http://doi.org/10.3233/WOR-141957" target="_blank" rel="noreferrer">10.3233/WOR-141957</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
The nature or genre of the resource
Journal Article
2014
Backlog
Cadell S
Journal Article
Kennedy K
Macdonald ME
Mitchell LM
Moll S
Pineda C
Stephenson PH
Work (reading, Mass.)
-
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/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2013-305246</a>
<a href="http://adc.bmj.com/content/99/8/754.abstract" target="_blank" rel="noreferrer noopener">http://adc.bmj.com/content/99/8/754.abstract</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
Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
PEDI Study; Metabolic; Neurodisability; Genetics
Creator
An entity primarily responsible for making the resource
Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M
Description
An account of the resource
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.Aim To describe these children's symptoms, as well as how the children's condition affects them physically.Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families.Setting/participants Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated.Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms.Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2013-305246</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
The nature or genre of the resource
Journal Article
2014
Andrews GS
Archives of Disease in Childhood
Backlog
Cadell S
Charting the territory
Davies B
Feichtinger L
Genetics
Journal Article
Metabolic
Neurodisability
PEDI Study
Siden H
Singh M
Steele R
-
Text
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<a href="http://doi.org/10.1155/2013/193937" target="_blank" rel="noreferrer">http://doi.org/10.1155/2013/193937</a>
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Title
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Physician variability in treating pain and irritability of unknown origin in children with severe neurological impairment
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Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
Date
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2013
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Article #6
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Siden H; Carleton BC; Oberlander T
Description
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BACKGROUND: <⁄span> Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain. OBJECTIVE: <⁄span> To assess how physicians use pharmacotherapy to treat PIUO, and to report a pilot study of a standardized approach to investigating and treating PIUO. METHOD: <⁄span> Part 1 of the present study involved independently presenting a case vignette of a patient with PIUO to six experienced physicians who care for children with neurological impairments. They were asked for medication choices and sequences to empirically treat PIUO. Part 2 was a pilot study of a PIUO protocol. Patients followed a standard pathway for PIUO, referred to as the pathway for unknown pain (PUP). The initial drug sequence for the PUP was based on Part 1. RESULTS: <⁄span> In Part 1, physicians responding to the case vignette listed eight medications (atypical antipsychotics, benzodiazepines, gabapentin, methadone, opioids, selective serotonin reuptake inhibitors, tramadol and tricylic antidepressants) and eight empiric drug sequences. In Part 2, eight children with PIUO (six to 17 years of age; five females, three males) were enrolled in a pilot clinic. Only two had been fully evaluated for nociceptive-inflammatory pain sources before enrollment. At the end of the pilot study, four patients were clinically improved and only three required a study medication. DISCUSSION AND CONCLUSION: <⁄span> Even experienced physicians do not agree on a common approach for medical treatment of PIUO. A standardized pathway is feasible and readily implemented. The proposed PUP has the potential to address PIUO and be the basis for future intervention studies.
2013-10
Identifier
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<a href="http://doi.org/10.1155/2013/193937" target="_blank" rel="noreferrer">10.1155/2013/193937</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
2013
Article #6
Backlog
Carleton BC
Journal Article
Oberlander T
Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
Siden H
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Backlog
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<a href="http://doi.org/10.1155/2013/286751" target="_blank" rel="noreferrer">http://doi.org/10.1155/2013/286751</a>
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Title
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Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care
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Nursing Research And Practice
Date
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2013
Creator
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Cook KA; Siden H; Jack S; Thabane L; Browne G
Description
An account of the resource
Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals.
2013
Identifier
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<a href="http://doi.org/10.1155/2013/286751" target="_blank" rel="noreferrer">10.1155/2013/286751</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
2013
Backlog
Browne G
Cook KA
Jack S
Journal Article
Nursing Research And Practice
Siden H
Thabane 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
Backlog
URL Address
<a href="http://doi.org/10.1002/pbc.24902" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24902</a>
<a href="http://onlinelibrary.wiley.com/doi/10.1002/pbc.24902/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1002/pbc.24902/abstract</a>
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The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Successful use of indwelling tunneled catheters for the management of effusions in children with advanced cancer
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Pediatric Blood & Cancer
Date
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2013
Subject
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Pediatric oncology; ascites; catheters; indwelling; malignant; pleural effusion
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den Hollander BS; Connolly BL; Sung L; Rapoport A; Zwaan Cm; Grant RM; Parra D; Temple MJ
Description
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Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for management of MPE/MA in children with advanced cancer. Methods Children with MPE/MA who underwent ITC insertion (2007–2012) were retrospectively reviewed. Clinical, procedural, complication and outcome details were analyzed. Results PleurX® ITCs (n = 12) were inserted in eight patients (5–18 years) with sarcoma (11 MPE, 1 MA), achieving symptom relief and facilitating discharge home post ITC (median 2 days). Median survival following ITC was 51 days. There were two major complications: pain (n = 1), late site infection (n = 1), and five minor complications. Drainage ceased in four patients (pleurodesis/tumor progression). At time of death, six ITCs (five patients) were still in situ. Conclusions ITC appears to be a safe, effective treatment for MPE/MA in advanced pediatric cancer, achieving symptomatic relief and discharge home. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Identifier
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<a href="http://doi.org/10.1002/pbc.24902" target="_blank" rel="noreferrer">10.1002/pbc.24902</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
The nature or genre of the resource
Journal Article
2013
ascites
Backlog
catheters
Connolly BL
den Hollander BS
Grant RM
indwelling
Journal Article
malignant
Parra D
Pediatric Blood & Cancer
Pediatric Oncology
pleural effusion
Rapoport A
Sung L
Temple MJ
Zwaan Cm