1
40
2
-
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
March 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
March 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2019.01.005" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.jpainsymman.2019.01.005</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pediatric Palliative Care in the Multi-Cultural Context: Findings from a workshop conference
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
culture; palliative care; Pediatric; family; religion; health disparity; race/ethnicity
Creator
An entity primarily responsible for making the resource
Rosenberg A R; Bona K; Coker T; Feudtner C; Houston K; Ibrahim A; Macauley R; Wolfe J; Hays R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2019.01.005" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2019.01.005</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
An account of the resource
CONTEXT: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital. OBJECTIVES: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care-delivery. METHODS: Participants explored cases in one of four workshops focused on differences based on either race/ethnicity, economic disparity, religion/spirituality, or family-values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real-time. We used content analyses to qualitatively evaluate the texts and generate recommendations. RESULTS: Participants included 142 individuals representing over 6 unique disciplines, 25 of the United States, and 3 nations. Whereas the conference focused on pediatric palliative care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient- and family-experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes. CONCLUSION: Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.
2019
Bona K
Coker T
Culture
Family
Feudtner C
Hays R
health disparity
Houston K
Ibrahim A
Journal of Pain and Symptom Management
Macauley R
March 2019 List
Palliative Care
Pediatric
race/ethnicity
Religion
Rosenberg A R
Wolfe J
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
August 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.077" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.04.077</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
Poly-Symptomatology in Pediatric Palliative Care Patients: Baseline Evaluation of SHARE Parent-Reported Data (RP409)
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
symptom management; pediatric palliative care; medical complexity; Poly-Symptomatology; parental report data
Creator
An entity primarily responsible for making the resource
Feudtner C; Hays R; Friedrichsdorf S; Johnston E; Friebert S; Kang T; Wolfe J
Description
An account of the resource
Objectives: * Describe the study design of this study. * Specify the 5 most prevalent symptoms in pediatric palliative care. * Describe how symptom count, frequency, and severity contribute to poly-symptomatology. Importance: Pediatric palliative care (PPC) teams care for patients with a wide variety of conditions, often with substantial medical complexity, making symptom management challenging. Parental report data regarding the frequency and severity of symptoms in these patients has been limited. Objective(s): Characterize the prevalence, frequency, and severity of specific symptoms, as reported by parents of patients receiving PPC. Method(s): Parent-reported data were gathered from baseline questionnaires in a two-year longitudinal study being conducted at 7 children's hospitals in the Pediatric Palliative Care Research Network (PPCRN) SHARE project. Data included child's demographic and clinical characteristics, and 15 symptoms measured via the Memorial Symptom Assessment Scale, which scores symptom frequency (1, almost never; 2, sometimes; 3, a lot; 4, almost always) and severity (1, slight; 2, moderate; 3, severe; 4, very severe). Result(s): Of the 501 PPC patients thus far enrolled with completed data, 55% were male, 66% white, mean age of 7.3 years (+/-7.3 SD); the most prevalent complex chronic morbidities included neurologic (48%), cardiovascular (47%), and respiratory (34%) conditions; 72% were technology-dependent. Parents reported an average of 4.9 (+/-3.3 SD) symptoms per patient. The five most common symptoms were pain (55%; among patients with pain, mean frequency, 2.6; mean severity, 2.3), lack of energy (53%; 2.8; 2.4), irritability (47%; 2.4; 2.1), drowsiness (43%; 2.6; 2.2), and shortness of breath (39%; 2.7; 2.4). 10% of patients had markedly elevated level of symptoms (minimal frequency and severity scores of "a lot" and "severe" for each symptom), with the typical patient in this subgroup having 6 symptoms. Conclusion(s): A majority of children receiving palliative care are experiencing poly-symptomatology. An important sub-group of patients suffer frequently from numerous severe symptoms. Impact: Assessment and management of poly-symptomatology is a critical aspect of PPC. Copyright © 2020
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.077</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
August 2020 List
Feudtner C
Friebert S
Friedrichsdorf S
Hays R
Johnston E
Journal of Pain and Symptom Management
Kang T
Medical Complexity
parental report data
Pediatric Palliative Care
Poly-Symptomatology
Symptom Management
Wolfe J