1
40
38
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/00002820-200004000-00011" target="_blank" rel="noreferrer">http://doi.org/10.1097/00002820-200004000-00011</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
Facilitating day-to-day decision making in palliative care
Publisher
An entity responsible for making the resource available
Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Nurse-Patient Relations; 80 and over; Non-U.S. Gov't; Research Support; decision making; Palliative Care/psychology; Oncologic Nursing; Nursing Process
Creator
An entity primarily responsible for making the resource
Bottorff JL; Steele R; Davies B; Porterfield P; Garossino C; Shaw M
Description
An account of the resource
As part of a larger grounded theory study investigating the process by which palliative care patients make everyday choices, a secondary analysis of data was conducted to investigate the ways nurses support or restrict patients' participation in their care. Constant comparative methods were used to generate a detailed, contextually grounded description of nurses' strategies that influenced patients' participation in making everyday choices about their personal and nursing care. Data consisted of field notes derived from observations of patients and their caregivers in two hospital-based palliative care units and from 23 transcripts of interviews with participating nurses and patients. Nurses' efforts to support patients' participation in decision making were described as a four-phase process: getting to know the patient, enhancing opportunities for choice, being open to patient choice, and respecting choice. Factors influencing nurses' use of supportive behaviors and behaviors that restricted patients' participation in everyday choices were identified. Given the importance patients attributed to making choices, these findings provide a foundation for the design of nursing interventions that hold great potential for directly influencing quality of life.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00002820-200004000-00011" target="_blank" rel="noreferrer">10.1097/00002820-200004000-00011</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).
Type
The nature or genre of the resource
Journal Article
2000
80 And Over
Adult
Aged
Backlog
Bottorff JL
Cancer Nursing
Davies B
Decision Making
Female
Garossino C
Humans
Journal Article
Male
Middle Aged
Non-U.S. Gov't
Nurse-patient Relations
Nursing Process
Oncologic Nursing
Palliative Care/psychology
Porterfield P
Questionnaires
Research Support
Shaw M
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.
Publisher
An entity responsible for making the resource available
The American Journal Of Orthopsychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Human Development; Adult; Aged; Caregivers/psychology; Child; Disabled Children/psychology; Humans; Male; Middle Aged; Models Psychological; Palliative Care/psychology; Parents/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Cadell S; Hemsworth D; Smit QT; Steele R; Davies E; Liben S; Straatman L; Siden H
Description
An account of the resource
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyond. For those parents who have a child who is born with or is later diagnosed with a life-limiting illness, parents also become caregivers in ways that parents of predominantly well children do not. While the circumstances are undisputedly stressful, for some parents benefits can co-occur along with the negative outcomes. This article tests two structural equation models of possible factors that allow these parent caregivers to experience growth in the circumstances. The diagnosis and illness of a child in the context of pediatric palliative care is a very complex experience for parents. The stresses are numerous and life-changing and yet the parents in this research demonstrated growth as measured by the Post Traumatic Growth Inventory. It appears that particular personal resources reflected in personal well-being are a precursor to the process of positive meaning making, which then, in turn, contributes to growth. The path to posttraumatic growth is not a simple one, but this research contributes to further elucidating it.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1037/h0099384" target="_blank" rel="noreferrer">10.1037/h0099384</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).
2014
Adult
Aged
Cadell S
Caregivers/psychology
Child
Davies E
Disabled Children/psychology
Hemsworth D
Human Development
Humans
Liben S
Male
Middle Aged
Models Psychological
Palliative Care/psychology
Parents/psychology
Siden H
Smit QT
Steele R
Straatman L
The American Journal Of Orthopsychiatry
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1177/0269216309103122" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216309103122</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
Considerations for ethics in multisite research in paediatric palliative care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
PPC Book Chapter 2011 (Kim Widger); Multi-site Ethics; NET CV
Creator
An entity primarily responsible for making the resource
Cadell S; Ho G; Jacques L; Wilson K; Davies B; Steele R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216309103122" target="_blank" rel="noreferrer">10.1177/0269216309103122</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2009
2009
Backlog
Cadell S
Davies B
Ho G
Jacques L
Journal Article
Multi-site Ethics
NET CV
Palliative Medicine
PPC Book Chapter 2011 (Kim Widger)
Steele R
Wilson K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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
Supporting families in palliative care.
Publisher
An entity responsible for making the resource available
Oxford Textbook Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Creator
An entity primarily responsible for making the resource
Davies B; Steele R
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).
Type
The nature or genre of the resource
Book/Book Section
2010
Book/Book Section
Davies B
Oxford Textbook Of Palliative Nursing
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8885562" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=8885562</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
Challenges in identifying children for palliative care
Publisher
An entity responsible for making the resource available
Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Child; Attitude to Death; Pilot Projects; quality of life; patient care team; Caregivers/psychology; Human; Palliative Care; Attitude of Health Personnel; Patient Selection
Creator
An entity primarily responsible for making the resource
Davies B; Steele R
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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
1996
1996
Attitude Of Health Personnel
Attitude To Death
Backlog
Caregivers/psychology
Child
Davies B
Human
Journal Article
Journal Of Palliative Care
Palliative Care
Patient Care Team
Patient Selection
Pilot Projects
Quality Of Life
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
August 2016 List
URL Address
<a href="http://journals.sagepub.com/doi/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">http://journals.sagepub.com/doi/10.1177/1049732316664712</a>
Notes
Hard-copy issue published: February 1, 2017; Article first published online: August 23, 2016
Cite as:
Davies, B., Steele, R., Krueger, G., Albersheim, S., Baird, J., Bifirie, M., Cadell, S., Doane, S., Garga, D., Siden, H., Strahlendorf, C., & Zhou, Y. (February, 2017). Best practices in provider/parent interaction. Qualitative Health Research, 27(3), 406-420. doi:10.1177/1049732316664712
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
Best Practice In Provider/Parent Interaction
Publisher
An entity responsible for making the resource available
Qualitative Health Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
Creator
An entity primarily responsible for making the resource
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Description
An account of the resource
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Albersheim S
August 2016 List
Baird J
Best Practice
Best Practices in Provider/Parent Interactions in Pediatrics
Bifirie M
Biomedical
Cadell S
Canada
Childs Death
Communication
Davies B
Doane G
Empathy
Family Perspectives
Garga D
Grounded Theory
Hospital Staff
Information Science & Library Science
Interdisciplinary
Krueger G
Medicine
Palliative Care
Parents Experiences
Patient-provider
Pediatric Palliative Care
Pediatrics
Practice Guidelines
Qualitative Analysis
Qualitative Health Research
Quality
Reflection
Relationships
Siden H
Social Sciences
Steele R
Strahlendorf C
Zhao Y
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="https://books.google.ca/books?id=rAZiOwTY7uUC&pg=PA96&lpg=PA96&dq=Research+considerations+in+pediatric+palliative+care&source=bl&ots=_2LYGGhnZ4&sig=MgUIcBYf0kZ0cA6V0dlzn3L--6w&hl=en&sa=X&ved=0ahUKEwjdsK2d56bRAhUG8GMKHZqtB9AQ6AEIRTAH#v=onepage&q=Research%20considerations%20in%20pediatric%20palliative%20care&f=false" target="_blank" rel="noreferrer">https://books.google.ca/books?id=rAZiOwTY7uUC&pg=PA96&lpg=PA96&dq=Research+considerations+in+pediatric+palliative+care&source=bl&ots=_2LYGGhnZ4&sig=MgUIcBYf0kZ0cA6V0dlzn3L--6w&hl=en&sa=X&ved=0ahUKEwjdsK2d56bRAhUG8GMKHZqtB9AQ6AEIRTAH#v=onepage&q=Research%20considerations%20in%20pediatric%20palliative%20care&f=false</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
Research considerations in pediatric palliative care
Creator
An entity primarily responsible for making the resource
Davies B; Widger K; Steele R; Cadell S; Siden H; Straatman L
Publisher
An entity responsible for making the resource available
New York: Elsevier
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Source
A related resource from which the described resource is derived
In Wolff J, Sourkes B, & Hinds P (Eds.) Textbook of Interdisciplinary Pediatric Palliative Care, First Edition. New York: Elsevier, 96-103.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2011
Cadell S
Davies B
Siden H
Steele R
Straatman L
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 2 - Parent Perspectives 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
2024 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2017.1334009</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
Siblings’ voices: A prospective investigation of experiences with a dying child
Publisher
An entity responsible for making the resource available
Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Death and Dying; dying child; families; Family; Hospitals; life experiences; Life Experiences; peers; Peers; siblings; Siblings
Creator
An entity primarily responsible for making the resource
Eaton RC; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Description
An account of the resource
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings’ perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience. (PsycINFO Database Record (c) 2019 APA, all rights reserved)
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1334009</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).
2018
2024 SE2 - Parent Perspectives
Barrera M
Beaune L
Cadell S
Death and Dying
Death studies
dying child
Eaton RC
Families
Family
Hospitals
Life Experiences
Neville A
peers
Rapoport A
Rugg M
Siblings
Steele R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.5737/1181912x18118" target="_blank" rel="noreferrer">http://doi.org/10.5737/1181912x18118</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
Supportive care needs of women with lung cancer
Publisher
An entity responsible for making the resource available
Canadian Oncology Nursing Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Lung Neoplasms; caregivers; Support; Questionnaires; Lung Cancer; Women
Creator
An entity primarily responsible for making the resource
Fitch MI; Steele R
Description
An account of the resource
The main purpose of this exploratory study was to identify the supportive care needs of women with lung cancer who attend an ambulatory regional cancer centre. Lung cancer has more than a physical impact on those who are diagnosed with the disease, yet relatively little has been reported on the supportive care needs beyond those for symptom management. A total of 34 women diagnosed with lung cancer participated in this exploratory study by completing a self-report questionnaire (Supportive Care Needs Survey). The data provided clear indication that a range of needs exists for this group of women and many needs remain unmet. Lack of energy, pain, and concern about those close to them were the most frequently reported needs. Patients expressed difficulty managing their needs and many experienced emotional distress because of their difficulties. Suggestions for practice and future research are offered to assist cancer nurses in caring for this group of patients.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5737/1181912x18118" target="_blank" rel="noreferrer">10.5737/1181912x18118</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).
Type
The nature or genre of the resource
Journal Article
2008
Backlog
Canadian Oncology Nursing Journal
Caregivers
Fitch MI
Journal Article
Lung Cancer
Lung Neoplasms
Questionnaires
Steele R
Support
Women
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2017 List
Notes
<p>Friedrichsdorf, Stefan J<br />Postier, Andrea C<br />Andrews, Gail S<br />Hamre, Karen Es<br />Steele, Rose<br />Siden, Harold<br />Journal Article<br />New Zealand<br />J Pain Res. 2017 Jul 31;10:1841-1852. doi: 10.2147/JPR.S138153. eCollection 2017.</p>
URL Address
<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">https://doi.org/10.2147/JPR.S138153</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
Pain Reporting And Analgesia Management In 270 Children With A Progressive Neurologic, Metabolic Or Chromosomally Based Condition With Impairment Of The Central Nervous System: Cross-sectional, Baseline Results From An Observational, Longitudinal Study
Publisher
An entity responsible for making the resource available
Journal Of Pain Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Hospice; Life-limiting; Neuropathic Pain; Palliative; Pediatric Palliative Care
Creator
An entity primarily responsible for making the resource
Friedrichsdorf SJ; Postier A; Andrews GS; Hamre K E; Steele R; Siden H
Description
An account of the resource
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">10.2147/jpr.s138153</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Andrews GS
Charting the territory
Friedrichsdorf SJ
Hamre K E
Hospice
Journal Of Pain Research
Life-limiting
Neuropathic Pain
October 2017 List
Pain and Irritability Project
Palliative
Pediatric Palliative Care
Postier A
Siden H
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1080/073993398246070" target="_blank" rel="noreferrer">http://doi.org/10.1080/073993398246070</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
Conducting feminist research in nursing: personal and political challenges
Publisher
An entity responsible for making the resource available
Health Care For Women International
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Female; Humans; Attitude of Health Personnel; Choice Behavior; Feminism; Women/psychology; Nurses/psychology; Nursing Methodology Research/methods/standards; Politics; Research Personnel/psychology
Creator
An entity primarily responsible for making the resource
Maxwell-Young L; Olshansky E; Steele R
Description
An account of the resource
The challenges of doing feminist nursing research include both personal and political elements. Some of these arise from the threefold influences of being nurses, women, and academics within a larger social context that may be antithetical to feminist values. This paper explores such challenges, using examples from the research of each of the three authors. It includes discussion of such concepts as the tendency to reify certain methodologies and the political forces that may drive research decisions. The authors summarize the challenges of doing feminist nursing research as learning to integrate diverse approaches rather than adhering to a politically correct way of conducting research. They draw on their own research experiences to illustrate the internal conflicts and personal struggles inherent in overcoming the perception that there is one proper way to conduct feminist inquiry.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/073993398246070" target="_blank" rel="noreferrer">10.1080/073993398246070</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
1998
Attitude Of Health Personnel
Backlog
Choice Behavior
Female
Feminism
Health Care For Women International
Humans
Journal Article
Maxwell-Young L
Nurses/psychology
Nursing Methodology Research/methods/standards
Olshansky E
Politics
Research Personnel/psychology
Steele R
Women/psychology
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1136/bmjebm-2020-111452" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjebm-2020-111452</a>
Dublin Core
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Title
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Optimising the process for conducting scoping reviews
Publisher
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BMJ Evidence-Based Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Evidence-Based Medicine; Humans; information science; Publications; Research Design; Q3 Scoping Review
Creator
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Pawliuk C; Brown HL; Widger K; Dewan T; Hermansen AM; Grégoire MC; Steele R; Siden H
Description
An account of the resource
Knowledge synthesis constitutes a key part of evidence-based medicine and a scoping review is a type of knowledge synthesis that maps the breadth of literature on a topic. Conducting a scoping review is resource intensive and, as a result, it can be challenging to maintain best practices throughout the process. Much of the current guidance describes a scoping review framework or broad ways to conduct a scoping review. However, little detailed guidance exists on how to complete each stage to optimise the process. We present five recommendations based on our experience when conducting a particularly challenging scoping review: (1) engage the expertise of a librarian throughout the process, (2) conduct a truly systematic search, (3) facilitate communication and collaboration, (4) explore new tools or repurpose old ones, and (5) test every stage of the process. These recommendations add to the literature by providing specific and detailed advice on each stage of a scoping review. Our intent is for these recommendations to aid other teams that are undertaking knowledge synthesis projects.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjebm-2020-111452" target="_blank" rel="noreferrer noopener">10.1136/bmjebm-2020-111452</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
BMJ Evidence-Based Medicine
Brown HL
Dewan T
Evidence-based Medicine
Grégoire MC
Hermansen AM
Humans
information science
Pawliuk C
Publications
Q3 Scoping Review
Research Design
Siden H
Steele R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2012-1916</a>
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Title
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Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
Creator
An entity primarily responsible for making the resource
Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</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).
2013
Article
Artificial Feeding
Child Care
Child Death
Clinical Practice
Concept Formation
Controlled Study
Decision Making
Female
Human
Hydration
Male
March 2018 List
Newman C
Parental Attitude
Pediatrics
Personal Experience
Priority Journal
Qualitative Research
Quality Of Life
Rapoport A
Religion
Rugg M
Satisfaction
Shaheed J
Steele R
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
July 2017 List
Notes
<p>1091-7683<br />Russell, Ceilidh Eaton<br />Widger, Kimberley<br />Beaune, Laura<br />Neville, Alexandra<br />Cadell, Susan<br />Steele, Rose<br />Rapoport, Adam<br />Rugg, Maria<br />Barrera, Maru<br />Journal Article<br />United States<br />Death Stud. 2017 May 25. doi: 10.1080/07481187.2017.1334009.</p>
URL Address
<a href="http://dx.doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">http://dx.doi.org/10.1080/07481187.2017.1334009</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
Siblings' Voices: A Prospective Investigation Of Experiences With A Dying Child
Publisher
An entity responsible for making the resource available
Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Children; End-of-life; Palliative Care; Pediatrics; Sibling
Creator
An entity primarily responsible for making the resource
Russell CE; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Description
An account of the resource
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">10.1080/07481187.2017.1334009</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).
2017
Barrera M
Beaune L
Cadell S
Children
Death studies
end-of-life
July 2017 List
Neville A
Palliative Care
Pediatrics
Rapoport A
Rugg M
Russell CE
Sibling
Steele R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="https://doi.org/10.1016/j.pedn.2010.01.007" target="_blank" rel="noreferrer">https://doi.org/10.1016/j.pedn.2010.01.007</a>
Notes
<p>1532-8449<br />Schneider, Monica<br />Steele, Rose<br />Cadell, Susan<br />Hemsworth, David<br />MOP-79526/Canadian Institutes of Health Research/Canada<br />Journal Article<br />Research Support, Non-U.S. Gov't<br />United States<br />J Pediatr Nurs. 2011 Jun;26(3):186-99. doi: 10.1016/j.pedn.2010.01.007. Epub 2010 Feb 25.</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Title
A name given to the resource
Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Subject
The topic of the resource
Parent-child Relations; Adaptation Psychological; Adult; Aged; Caregivers/ Psychology; Child; Chronic Disease; Cost Of Illness; Fathers/ Psychology; Female; Humans; Male; Middle Aged; Mothers/ Psychology; Palliative Care/ Psychology; Sex Factors; Stress Psychological/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Schneider M; Steele R; Cadell S; Hemsworth D
Description
An account of the resource
This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a) determine if there were gender differences and (b) identify gender-specific correlations among these outcomes. Findings suggest that significant gender differences exist. Women reported higher average scores compared with men for meaning in caregiving, depression, burden, and posttraumatic growth and lower average scores for optimism. Correlations also revealed some significant differences. Health care professionals need to be aware of gender differences and tailor their interventions appropriately.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1016/j.pedn.2010.01.007" target="_blank" rel="noreferrer">10.1016/j.pedn.2010.01.007</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).
2011
Adaptation Psychological
Adult
Aged
Cadell S
Caregivers/ Psychology
Child
Chronic Disease
Cost Of Illness
Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses
Fathers/ Psychology
Female
Hemsworth D
Humans
Journal of Pediatric Nursing
Male
Middle Aged
Mothers/ Psychology
Palliative Care/ Psychology
Parent-child Relations
Schneider M
Sex Factors
Steele R
Stress Psychological/psychology
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/" target="_blank" rel="noreferrer noopener">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/</a>
Dublin Core
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Title
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Charting the Territory: Children and families living with progressive life-threatening conditions
Publisher
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Paediatrics & Child Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Creator
An entity primarily responsible for making the resource
Siden H; Steele R
Description
An account of the resource
OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents. METHODS: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child. RESULTS: These children had a high symptom burden. The three most common symptoms were pain, sleep problems and feeding difficulties; on average, they had 3.2 symptoms of concern. Despite analgesic use, the frequency of pain episodes and distress were invariant over time, suggesting that treatments were not successful. Parents experienced anxiety, depression and burden; at the same time they also reported positive life change and a high degree of spirituality. The child’s condition resulted in parental changes in living arrangements, work status and hours devoted to caregiving. Nearly two-thirds of families were involved with a palliative care team; the size of the community in which a family resided did not make a significant difference in such involvement. CONCLUSIONS: These families experience many challenges, for the patient, other individual members and the family as a whole. At least some of these challenges may be alleviated by early and organized palliative care. Effective interventions are needed to enhance symptom management for the ill child and to alleviate the various negative impacts on the family.
2015-04
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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
2015
Backlog
Charting the territory
Journal Article
Paediatrics & Child Health
Siden H
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/1471-2431-10-67</a>
Dublin Core
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Title
A name given to the resource
Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory
Publisher
An entity responsible for making the resource available
BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Child; Humans; Canada; Longitudinal Studies; Mental Disorders; Biomedical Research; PEDI Study; Metabolic Diseases; Genetic Diseases; Inborn; Biomedical Research/methods; Canada; Child; Genetic Diseases Inborn/therapy; Humans; Longitudinal Studies/methods; Mental Disorders/therapy; Metabolic Diseases/therapy
Creator
An entity primarily responsible for making the resource
Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS
Description
An account of the resource
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">10.1186/1471-2431-10-67</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).
Type
The nature or genre of the resource
Journal Article
2010
Andrews GS
Backlog
Biomedical Research
Bmc Pediatrics
Brant R
Cadell S
Canada
Child
Davies B
Genetic Diseases
Humans
inborn
Journal Article
Longitudinal Studies
Mental Disorders
Metabolic Diseases
PEDI Study
Siden H
Steele R
Straatman L
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research.
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Biomedical Research; Palliative Care; Patient Selection; Female; Humans; Male; Parents/psychology; Research Design/standards
Creator
An entity primarily responsible for making the resource
Siden H; Steele R; Cadell S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216315620945" target="_blank" rel="noreferrer">10.1177/0269216315620945</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Biomedical Research
Cadell S
Charting the territory
Female
Humans
Male
Palliative Care
Palliative Medicine
Parents/psychology
Patient Selection
Research Design/standards
Siden H
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2016.10.298</a>
<a href="http://www.sciencedirect.com/science/article/pii/S0885392416306704" target="_blank" rel="noreferrer noopener">http://www.sciencedirect.com/science/article/pii/S0885392416306704</a>
Dublin Core
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Title
A name given to the resource
P259 A Scoping Review to Examine Symptoms in Children with Rare, Progressive, Life-Threatening Disorders
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
2016
Creator
An entity primarily responsible for making the resource
Siden H; Widger K; Gregoire MC; Dewan T; Harvey B; Hermansen AM; Pawliuk C; Brown H; Beck C; Steele R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2016.10.298" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2016.10.298</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2016-12
2016
Backlog
Beck C
Brown H
Dewan T
Grégoire MC
Harvey B
Hermansen AM
Journal Article
Journal of Pain and Symptom Management
Pawliuk C
Q3 Scoping Review
Siden H
Steele R
Widger K
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2002.8.9.10687" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2002.8.9.10687</a>
Dublin Core
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Title
A name given to the resource
Experiences of families in which a child has a prolonged terminal illness: modifying factors.
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Female; Humans; Male; Family; Communication; Longitudinal Studies; Non-U.S. Gov't; Research Support; Parents/psychology; Terminal Care/psychology; Neurodegenerative Diseases/nursing
Creator
An entity primarily responsible for making the resource
Steele R
Description
An account of the resource
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining families' experiences when a child with an NLTI is dying at home. In this grounded theory study, data were collected from eight families through observations and audiotaped interviews. Families moved through a process of 'navigating uncharted territory' as they lived with their dying child. The strategies that families used to manage this phenomenon were influenced by four intervening conditions that reflected the broader structural context of the phenomenon; relationships with healthcare providers, availability of information, gender differences, and communication between parents. Each condition facilitated or constrained the strategies that families were able to use. Implications for research, education and practice are discussed.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2002.8.9.10687" target="_blank" rel="noreferrer">10.12968/ijpn.2002.8.9.10687</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
2002
Backlog
Child
Communication
Family
Female
Humans
International Journal of Palliative Nursing
Journal Article
Longitudinal Studies
Male
Neurodegenerative Diseases/nursing
Non-U.S. Gov't
Parents/psychology
Research Support
Steele R
Terminal Care/psychology
-
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.5737/1181912x1511520" target="_blank" rel="noreferrer">http://doi.org/10.5737/1181912x1511520</a>
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Title
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Do we have the power to create our own future as oncology nurses?
Publisher
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Canadian Oncology Nursing Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Leadership; Nurse's Role; Sex Factors; Power (Psychology); Students; Nursing; Oncologic Nursing; Societies; Nursing/psychology
Creator
An entity primarily responsible for making the resource
Steele R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5737/1181912x1511520" target="_blank" rel="noreferrer">10.5737/1181912x1511520</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).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Backlog
Canadian Oncology Nursing Journal
Female
Humans
Journal Article
Leadership
Male
Nurse's Role
Nursing
Nursing/psychology
Oncologic Nursing
Power (psychology)
Sex Factors
Societies
Steele R
Students
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
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Title
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
Biomedical Research; Child Health Services; Adolescent; Adult; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Palliative Care; Parents/psychology; Severity Of Illness Index; Surveys And Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L
Description
An account of the resource
BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
Adult
Andrews GS
Biomedical Research
Cadell S
Charting the territory
Child
Child Health Services
Child Preschool
Feichtinger L
Female
Humans
Infant
Infant Newborn
Journal of Palliative Medicine
Male
Middle Aged
Palliative Care
Parents/psychology
Severity Of Illness Index
Siden H
Smit QT
Steele R
Surveys And Questionnaires
Young Adult
-
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>
Dublin Core
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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
An entity primarily responsible for making the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2006.12.12.22544" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2006.12.12.22544</a>
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Title
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Impact on parents when a child has a progressive, life-threatening illness.
Publisher
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International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Palliative Care; Pediatrics; Parent-Child Relations; Disease Progression; Longitudinal Studies
Creator
An entity primarily responsible for making the resource
Steele R; Davies B
Description
An account of the resource
Children with neurodegenerative, life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care, yet there is a lack of of research that examines families' experiences. This grounded theory study generated a contextually-grounded description of the experiences of families living with a child who has an NLTI. Data were collected from eight families (n=29 family members) through observations and audiotaped interviews. The impact on parents was pervasive and multidimensional. Parents faced many emotional, physical, financial, and spiritual impacts on their lives. Parents often needed help to alleviate the impact of their experience, but it was not always available in a useful manner. Despite the negative aspects, caring for the child was never viewed by parents as a burden. Fatigue was a particularly prevalent symptom that held the potential to impact on parents in multiple ways. Suggestions for practice and research are offered to assist health care professionals in providing optimal pediatric palliative care to these families.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2006.12.12.22544" target="_blank" rel="noreferrer">10.12968/ijpn.2006.12.12.22544</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
2006
Backlog
Child
Davies B
Disease Progression
Humans
International Journal of Palliative Nursing
Journal Article
Longitudinal Studies
Palliative Care
Parent-child Relations
Pediatrics
Steele R
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Citation List Month
n/a
URL Address
<a href="https://doi.org/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">https://doi.org/10.12968/ijpn.2008.14.5.29492</a>
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Title
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Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Canada; Child; Health Planning; Health Services Needs and Demand; Hospices/organization & administration; Humans; Palliative Care; Pediatrics; Pilot Projects
Creator
An entity primarily responsible for making the resource
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
Description
An account of the resource
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.5.29492</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).
2008
Cadell S
Canada
Child
Davies B
Derman S
Health Planning
Health Services Needs And Demand
Hospices/organization & administration
Humans
International Journal of Palliative Nursing
Palliative Care
Pediatrics
Pilot Projects
Siden H
Steele R
Straatman 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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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2008.14.6.30024" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2008.14.6.30024</a>
Dublin Core
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Title
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Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Female; Humans; Male; Canada; Pilot Projects; Patient Acceptance of Health Care; Research Design; Feasibility Studies; Hospices; Hospitals; Respite Care; Pediatric; adolescent; Preschool; infant; Parents/psychology; NET CV; Health Services Research/methods; Catastrophic Illness
Creator
An entity primarily responsible for making the resource
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
Description
An account of the resource
The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada. The perspectives of non-hospice health care professionals (n=4) involved in the child's care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family. Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2008.14.6.30024" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.6.30024</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
2008
Adolescent
Backlog
Cadell S
Canada
Catastrophic Illness
Child
Davies B
Derman S
Feasibility Studies
Female
Health Services Research/methods
Hospices
Hospitals
Humans
Infant
International Journal of Palliative Nursing
Journal Article
Male
NET CV
Parents/psychology
Patient Acceptance of Health Care
Pediatric
Pilot Projects
Preschool
Research Design
Respite Care
Siden H
Steele R
Straatman L
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2008.14.5.29492</a>
Dublin Core
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Title
A name given to the resource
Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; Palliative Care; Pediatrics; Canada; Health Planning; Health Services Needs and Demand; Pilot Projects; NET CV; Hospices/organization & administration
Creator
An entity primarily responsible for making the resource
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
Description
An account of the resource
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.5.29492</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).
Type
The nature or genre of the resource
Journal Article
2008
Backlog
Cadell S
Canada
Child
Davies B
Derman S
Health Planning
Health Services Needs And Demand
Hospices/organization & administration
Humans
International Journal of Palliative Nursing
Journal Article
NET CV
Palliative Care
Pediatrics
Pilot Projects
Siden H
Steele R
Straatman 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
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
URL Address
<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">http://scholars.wlu.ca/scwk_faculty/12/</a>
Dublin Core
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Title
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Research priorities in pediatric palliative care: a delphi study
Publisher
An entity responsible for making the resource available
Journal Of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Attitude of Health Personnel; Attitude to Health; Benchmarking; bereavement; Canada; Child; Consensus; Delphi Technique; Evidence-Based Practice; Family/psychology; Humans; Needs Assessment/organization & administration; Pain/prevention & control; Palliative Care/organization & administration; Pediatrics/organization & administration; Practice Guidelines as Topic; Psychological/prevention & control; Questionnaires; Research Design; Research/organization & administration; Stress
Creator
An entity primarily responsible for making the resource
Steele R; Fletcher JM; Bosma H; Siden H; Straatman L; Fleming C; Cadell S; Davies B
Description
An account of the resource
Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinents lines of research. Method: A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada. Results: Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life? Conclusions: These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">scwk_faculty/12</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).
2007
Attitude Of Health Personnel
Attitude To Health
Benchmarking
Bereavement
Bosma H
Cadell S
Canada
Child
Consensus
Davies B
Delphi Technique
Evidence-based Practice
Family/psychology
Fleming C
Fletcher JM
Humans
Journal Of Palliative Care
Needs Assessment/organization & administration
Pain/prevention & control
Palliative Care/organization & Administration
Pediatrics/organization & Administration
Practice Guidelines As Topic
Psychological/prevention & control
Questionnaires
Research Design
Research/organization & administration
Siden H
Steele R
Straatman L
Stress
-
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
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Title
A name given to the resource
Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
Publisher
An entity responsible for making the resource available
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
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<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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Type
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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
-
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PedPalASCNet Member Publications
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A collection of relevant articles published by one or more of PedPalASCNet's members
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June 2016 List
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Title
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Siblings Of Children With A Complex Chronic Health Condition: Maternal Posttraumatic Growth As A Predictor Of Changes In Child Behavior Problems.
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Journal Of Pediatric Psychology
Date
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2016
Subject
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Child Behavior Problems; Complex Chronic Conditions; Families; Pediatric Palliative Care; Posttraumatic Growth; Siblings.
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Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
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OBJECTIVE:
The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
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DOI: 10.1093/jpepsy/jsw053
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2016
Andrews GS
Cadell S
Charting the territory
Child Behavior Problems
Complex Chronic Conditions
DeLongis A
Families
Journal of Pediatric Psychology
June 2016 List
Pediatric Palliative Care
Posttraumatic Growth
Siblings.
Siden H
Steele R
Stephenson E
-
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PedPalASCNet Member Publications
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<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsw053</a>
<a href="http://www.ncbi.nlm.nih.gov/pubmed/27342306" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/pubmed/27342306</a>
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Title
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Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems
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Journal of Pediatric Psychology
Date
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2016
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Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
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OBJECTIVE: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
2016-06
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<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer">10.1093/jpepsy/jsw053</a>
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Type
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Journal Article
2016
Andrews GS
Backlog
Cadell S
DeLongis A
Journal Article
Journal of Pediatric Psychology
Siden H
Steele R
Stephenson E
-
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2023 Special Edition 2 - Parent Perspectives List
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2031 SE2 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/jpepsy/jsw053</a>
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Title
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Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Publisher
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Journal of Pediatric Psychology
Date
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2017
Subject
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Behavior Problems; child behavior problems; Chronic Illness; complex chronic conditions; families; Family; Palliative Care; pediatric palliative care; Pediatrics; posttraumatic growth; Posttraumatic Growth; siblings; Siblings
Creator
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Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
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Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
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<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsw053</a>
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2017
2031 SE2 - Parent Perspectives
Andrews GS
behavior problems
Cadell S
Child Behavior Problems
Chronic Illness
Complex Chronic Conditions
DeLongis A
Families
Family
Journal of Pediatric Psychology
Palliative Care
Pediatric Palliative Care
Pediatrics
Posttraumatic Growth
Siblings
Siden H
Steele R
Stephenson E
-
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Title
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PedPalASCNet Member Publications
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n/a
URL Address
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2603510/" target="_blank" rel="noreferrer">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2603510/</a>
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Title
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Paediatric palliative care research in Canada: Development and progress of a new emerging team
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Paediatrics & Child Health
Date
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2008
Creator
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Straatman L; Cadell S; Davies B; Siden H; Steele R
Description
An account of the resource
Paediatric palliative care is a field distinct from adult palliative care, although there are many overlaps in language, approach and philosophy. Several features, however, distinguish paediatric palliative care. The illnesses that affect children are different from those that are most predominant in the adult population. In addition, the role and involvement of the family, while always important in palliative care generally, is heightened in paediatric palliative care. In this new and growing interdisciplinary specialty, paediatric palliative care professionals recognize that children exist within a family system, with individual members making up the components (1). These distinguishing characteristics mean that we cannot simply translate general or adult palliative care research to the paediatric arena. Canada has been a leader in the development of clinical paediatric palliative care, with programs in the major Canadian geographical centres, as well as North America’s first free-standing children’s hospice, Canuck Place Children’s Hospice (Vancouver, British Columbia). At the same time, there is widespread acknowledgement that not enough research has been undertaken within paediatric palliative care to provide an adequate evidence base for practice. To increase research capacity in Canada, in 2004, the Canadian Institutes of Health Research funded a research program entitled ‘Transitions in Pediatric Palliative and End-of-Life Care’ through a New Emerging Team grant.
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<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2603510/" target="_blank" rel="noreferrer">PMC2603510</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).
2008
Cadell S
Davies B
Paediatrics & Child Health
Siden H
Steele R
Straatman L
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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n/a
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Title
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Charting the territory: Describing the functional abilities of children with progressive neurological conditions.
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Research In Developmental Disabilities
Date
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2017
Subject
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Functional Abilities; Pediatric Evaluation Of Disability Inventory; Progressive Genetic Metabolic Or Neurological Conditions (pncs)
Creator
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Tatla Sandy K; Holsti L; Andrews GS; Feichtinger L; Steele R; Siden H
Description
An account of the resource
AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance. METHODS: This study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). RESULTS: The study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). CONCLUSIONS: Functional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.
Identifier
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<a href="http://doi.org/10.1016/j.ridd.2017.10.001" target="_blank" rel="noreferrer">10.1016/j.ridd.2017.10.001</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
Andrews GS
Charting the territory
Feichtinger L
Functional Abilities
Holsti L
Pediatric Evaluation Of Disability Inventory
Progressive Genetic Metabolic Or Neurological Conditions (pncs)
Research in Developmental Disabilities
Siden H
Steele R
Tatla Sandy K
-
Dublin Core
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Title
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May 2019 List
Text
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May 2019 List
URL Address
<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
Date
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2019
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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
-
Dublin Core
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PedPalASCNet Member Publications
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<a href="http://midnurse.umsha.ac.ir/uploads/Pediatric_Palliative_Care_Global_Perspectives.pdf" target="_blank" rel="noreferrer">http://midnurse.umsha.ac.ir/uploads/Pediatric_Palliative_Care_Global_Perspectives.pdf</a>
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Title
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Pediatric palliative care in Canada
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Widger K, Cadell S, Davies B, Siden H, Steele R
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2012
Description
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In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.
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In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.
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Springer Publishing
2012
Cadell S
Davies B
Siden H
Steele R
Widger K
-
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PedPalASCNet Member Publications
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1097/njh.0b013e3181aada87" target="_blank" rel="noreferrer">http://doi.org/10.1097/njh.0b013e3181aada87</a>
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Exploring the Supportive Care Model as a framework for pediatric palliative care
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Journal Of Hospice & Palliative Nursing
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2009
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Widger K; Steele R; Davies B; Oberle K
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<a href="http://doi.org/10.1097/njh.0b013e3181aada87" target="_blank" rel="noreferrer">10.1097/njh.0b013e3181aada87</a>
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Journal Article
Description
An account of the resource
2009
2009
Backlog
Davies B
Journal Article
Journal Of Hospice & Palliative Nursing
Oberle K
Steele R
Widger K
-
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PedPalASCNet Member Publications
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Backlog
URL Address
<a href="http://doi.org/10.1186/1472-684X-14-1" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-684X-14-1</a>
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Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care
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Bmc Palliative Care
Date
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2015
Creator
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Widger K; Tourangeau AE; Steele R; Streiner DL
Description
An account of the resource
BACKGROUND: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. METHODS: The study purpose was to develop and test an instrument to measure mothers' perspectives on the quality of care received before, at the time of, and following a child's death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children's hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted. RESULTS: Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument. CONCLUSIONS: There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children's end-of-life care.
2015
Identifier
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<a href="http://doi.org/10.1186/1472-684X-14-1" target="_blank" rel="noreferrer">10.1186/1472-684X-14-1</a>
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Journal Article
2015
Backlog
BMC Palliative Care
Journal Article
Steele R
Streiner DL
Tourangeau AE
Widger K