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40
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Text
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URL Address
<a href="http://doi.org/10.12788/j.suponc.0012" target="_blank" rel="noreferrer">http://doi.org/10.12788/j.suponc.0012</a>
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Title
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Best practices for pediatric palliative cancer care: a primer for clinical providers
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The Journal Of Supportive Oncology
Date
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2013
Creator
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Levine D; Lam CG; Cunningham MJ; Remke S; Chrastek J; Klick J; Macauley R; Baker JN
Description
An account of the resource
Cancer is the leading cause of disease-related death in children and adolescents. Pediatric patients with cancer suffer greatly at the end of life. However, palliative care interventions can reduce suffering and significantly improve the care of these patients and their families. A large percentage of pediatric deaths occur outside of the hospital setting where pediatric palliative resources may not be readily available. Patients in the home setting may be cared for by community hospice programs, which are typically staffed for adult populations. Increasingly, nonpediatric providers are asked to provide palliative care for children and adolescents at the end of life, yet they receive little formal training in this area. This review focuses on the principles of best practice in the provision of palliative care for children and adolescents with cancer. Our intent is to aid clinical providers in delivering optimal care to this patient population. Topics unique to pediatric palliative care that are addressed include: providing pain and symptom management in the broad pediatric range from neonate to adolescent; caring for and interacting with developmentally distinct groups; engaging in shared decision making with parents and adolescents; providing accommodations for prognoses that are often more uncertain than in adult patients; and delivering concurrent disease-directed therapy with palliative care.
2013-09
Identifier
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<a href="http://doi.org/10.12788/j.suponc.0012" target="_blank" rel="noreferrer">10.12788/j.suponc.0012</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
Baker JN
Chrastek J
Cunningham MJ
Journal Article
Klick J
Lam CG
Levine D
Macauley R
Remke S
The Journal Of Supportive Oncology
-
Dublin Core
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January 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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January List 2023
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<a href="http://doi.org/%2010.1016/j.jpainsymman.2022.11.028" target="_blank" rel="noreferrer noopener"> http://doi.org/ 10.1016/j.jpainsymman.2022.11.028</a>
Dublin Core
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Title
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Congruent Communication: Addressing culture and care for a seriously ill Rohingya infant
Publisher
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Journal of Pain and Symptom Management
Date
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2022
Subject
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Pediatric Palliative Care (PPC); Pediatric Ethics; Cross-Cultural Communication; Rohingya; Culture; Rohingya culture; Cross-Cultural Communication; Pediatric Ethics; Pediatric Palliative Care (PPC)
Creator
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Treat L; Macauley R
Description
An account of the resource
Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared decision making can be a complex task that often requires flexibility to respond to the clinical circumstances at hand, as well as contextualization within the family culture. In this paper, we present the case of an infant with a severe congenital brain malformation who was born in an American hospital to a Rohingya-speaking, Burmese family whose care preferences seemed to oscillate between comfort-focused and life-prolonging without clear acknowledgement of the consequences of shifting between treatment plans. Discussion of this case helps to illustrate the cultural factors, ethical challenges, and systems-level issues that can arise for medical teams in seeking to promote patient-centered care that respects family values while also honoring the principle of nonmaleficience.
Identifier
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<a href="http://doi.org/%2010.1016/j.jpainsymman.2022.11.028" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2022.11.028</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).
Pediatric Palliative Care (PPC)
2022
Cross-Cultural Communication
Culture
January List 2023
Journal of Pain and Symptom Management
Macauley R
Pediatric Ethics
Rohingya
Rohingya culture
Treat L
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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April 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.02.015</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric Hospice and Palliative Care Services and Needs Across the Northwest United States
Publisher
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Journal of Pain and Symptom Management
Date
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2022
Subject
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burnout; coalition; complex care; hospice; palliative care; pediatric
Creator
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Bogetz JF; Anderson A; Holland M; Macauley R
Description
An account of the resource
CONTEXT: Given workforce and funding constraints, pediatric hospice and palliative care clinicians often find challenges providing services for seriously ill children and families, particularly in low resource and rural/remote areas. OBJECTIVES: To describe the services, training, and education needs of pediatric hospice and palliative care programs across the Northwest United States as part of the formation of a new regional coalition. METHODS: Electronic surveys were sent to pediatric hospice and palliative care clinicians through state organizations as part of an email invitation to join the Northwest Pediatric Palliative Care Coalition. Data were analyzed descriptively using univariate analysis. RESULTS: Sixty-six participants representing 37 unique programs responded from seven states, including Washington (41%, n=27), Oregon (38%, n=25), Idaho (11%, n=7), Alaska (5%, n=3), Montana (3%, n=2), Colorado (2%, n=1), and Nevada (2%, n=1). Programs provided pediatric hospice care (42%, n=33/78) and palliative care services (30%, n=26/86). Although 26% (n=15/58) had been providing pediatric hospice and palliative care for >20 years, 40% (n=21/53) reported only serving <5 pediatric patients per year. Specific services provided included pediatric bereavement support (16%, n=37/231), telehealth (14%, n=33/231), and respite (10%, n=23/231). Barriers occurring always, often, or sometimes included lack of trained staff (84%), financial support (59%), and access to home infusions (48%). From the coalition, participants prioritized education on parent/caregiver psychosocial support (40%, n=19), goals of care communication (44%, n=21), and symptom management (45%, n=21). CONCLUSIONS: Pediatric hospice and palliative care clinicians face numerous barriers and may benefit from a coalition that provides networking and tailored education. Key Message: This study provides the first multi-state analysis of pediatric hospice and palliative care services, training, staffing, and education needs among participants of the inaugural Northwest Pediatric Palliative Care Coalition.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.015</a>
2022
Anderson A
April 2022 List
Bogetz JF
Burnout
coalition
complex care
Holland M
Hospice
Journal of Pain and Symptom Management
Macauley R
Palliative Care
Pediatric