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40
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Text
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URL Address
<a href="http://doi.org/10.1177/0269216307077173" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216307077173</a>
Dublin Core
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Title
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Challenges to participation in paediatric palliative care research: a review of the literature
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Humans; Attitude of Health Personnel; Qualitative Research; Terminally Ill/psychology; Palliative Care/ethics; Parents/psychology; Multi-site Ethics; Research Design/standards
Creator
An entity primarily responsible for making the resource
Tomlinson D; Bartels U; Hendershot E; Constantin J; Wrathall G; Sung L
Description
An account of the resource
It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team.
2007
Identifier
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<a href="http://doi.org/10.1177/0269216307077173" target="_blank" rel="noreferrer">10.1177/0269216307077173</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
2007
Attitude Of Health Personnel
Backlog
Bartels U
Child
Constantin J
Hendershot E
Humans
Journal Article
Multi-site Ethics
Palliative Care/ethics
Palliative Medicine
Parents/psychology
Qualitative Research
Research Design/standards
Sung L
Terminally Ill/psychology
Tomlinson D
Wrathall G
-
Dublin Core
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Title
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April 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
April 2018 List
URL Address
<a href="http://doi.org/10.1007/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11060-018-2781-0</a>
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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End-of-life care of children with diffuse intrinsic pontine glioma
Publisher
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Journal of Neuro-Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Palliative care; terminal care; Child; End-of-life care; Only Child; Palliative Care; Pediatric oncology; Terminal Care; child; Diffuse intrinsic pontine glioma (DIPG); Glioma
Creator
An entity primarily responsible for making the resource
Hasan F; Weingarten K; Rapoport A; Bouffet E; Bartels U
Description
An account of the resource
The end-of-life management of children with diffuse intrinsic pontine glioma (DIPG) is challenging. Families cope with debilitating symptoms and make complex decisions regarding their child's care. However, there is little evidence guiding palliative care provision for these children. Our objective was to describe the dying trajectory of children with DIPG, their symptoms, the care they require and the end-of-life decisions made for them. This retrospective cohort study analyzed the end-of-life care of 41 consecutive patients with DIPG who died between January 2001 and June 2010. All patients died of disease progression, experiencing a significant symptom burden prior to death. Despite this, the majority of patient days at the end of life were spent at home. However, 60% of patients were hospitalized at least once in their final 3 months, often close to the time of death. A wide range of healthcare professionals were involved, providing a range of medicinal/non-medicinal interventions. Chemotherapy was given to 30% of patients in their final month. Thirty of 33 families approached (91%) agreed to a "Do not resuscitate" order. A small subset of families opted for intensive treatment towards the end of life including cardiopulmonary resuscitation, intensive care admission and mechanical ventilation. Children with DIPG have complex needs and require intensive multidisciplinary support. This paper describes the end-of-life choices made for these children and discusses how these choices influence our institutional model for palliative care. We believe this approach will be useful to clinicians caring for similar patients.
Identifier
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<a href="http://doi.org/10.1007/s11060-018-2781-0" target="_blank" rel="noreferrer noopener">10.1007/s11060-018-2781-0</a>
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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
April 2018 List
Bartels U
Bouffet E
Child
Diffuse Intrinsic Pontine Glioma (DIPG)
End-of-life Care
Glioma
Hasan F
Journal of Neuro-Oncology
Only Child
Palliative Care
Pediatric Oncology
Rapoport A
Terminal Care
Weingarten K
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1002/pbc.25228" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.25228</a>
<a href="http://onlinelibrary.wiley.com/doi/10.1002/pbc.25228/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1002/pbc.25228/abstract</a>
Dublin Core
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Title
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Grief reactions and impact of patient death on pediatric oncologists
Publisher
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Pediatric Blood & Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Pediatric; Grief; emotional well-being; oncologists; patient death
Creator
An entity primarily responsible for making the resource
Granek L; Bartels U; Scheinemann K; Labrecque M; Barrera M
Description
An account of the resource
Background To examine pediatric oncologists' grief reactions to patient death, and the impact patient death has on their personal and professional lives. Procedure The grounded theory method was used. Data was collected between March 2012 and July 2012 at two academic centres in Canada. Twenty-one out of 34 eligible pediatric oncologists at different stages of their career were recruited and interviewed about their experiences with patient death. Inclusion criteria were: being able to speak English and having had a patient die in their care. The participants formed three groups of oncologists at different stages of career including: fellows, junior oncologists, and senior oncologists who varied in sub-specialties, gender, and ethnicities. Results Pediatric oncologists reported a range of reactions to patient death including sadness, crying, sleep loss, exhaustion, feeling physically ill, and a sense of personal loss. They also reported self-questioning, guilt, feelings of failure and helplessness. The impact of these deaths had personal consequences that ranged from irritability at home, feeling disconnected from family members and friends, and becoming more desensitized towards death, to gaining a greater and more appreciative perspective on life. Professional impacts included concern about turnover or burnout at work and improving holistic care as a result of patient deaths. Conclusions Grief over patient death and the emotional labour involved in these losses are a robust part of the pediatric oncology workplace and have major impacts on pediatric oncologist's personal and professional lives. Interventions that focus on how to help pediatric oncologists deal with these reactions are needed. Pediatr Blood Cancer © 2014 Wiley Periodicals, Inc.
2014-09
Identifier
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<a href="http://doi.org/10.1002/pbc.25228" target="_blank" rel="noreferrer">10.1002/pbc.25228</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
2014
Backlog
Barrera M
Bartels U
emotional well-being
Granek L
Grief
Journal Article
Labrecque M
oncologists
patient death
Pediatric
Pediatric Blood & Cancer
Scheinemann K
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1200/JCO.2010.31.4047" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2010.31.4047</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure
Publisher
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Journal Of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Parents; Questionnaires; Health Status; Psychology; quality of life; Neoplasms/physiopathology/psychology
Creator
An entity primarily responsible for making the resource
Tomlinson D; Hinds PS; Bartels U; Hendershot E; Sung L
Description
An account of the resource
PURPOSE: To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. PATIENTS AND METHODS: This cross-sectional study included children between the ages of 2 and 18 years with cancer and no reasonable chance of cure at The Hospital for Sick Children, Toronto, Ontario, Canada. Parents reported quality of life on behalf of their children. Outcomes were the PedsQL 4.0 Generic Core Scales, Acute Cancer Module, and Multidimensional Fatigue Scale. RESULTS: Seventy-three parents of children participated. Compared with children who survived more than 6 months (n = 43), those who died at 6 months or fewer (n = 30) had significantly worse physical health (mean difference, 15.9; 95% CI, 1.8 to 30.0; P = .028), more pain and hurt (mean difference, 15.5; 95% CI, 0.9 to 30.0; P = .037), and worse general fatigue (mean difference, 15.8; 95% CI, 2.4 to 29.1; P = .021) and sleep/rest fatigue (mean difference, 16.0; 95% CI, 3.5 to 28.5; P = .013). Among the entire cohort, those with leukemia/lymphoma had worse physical and psychosocial quality of life compared with those with solid or brain tumors. Recent stem-cell transplantation was associated with worse psychosocial health. CONCLUSION: Parents of children with cancer reported worse physical health, pain, and fatigue proximal to death. Those with leukemia/lymphoma were at higher risk for impaired quality of life. This knowledge can help in the design of targeted interventions to improve quality of life for children dying as a result of cancer.
Identifier
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<a href="http://doi.org/10.1200/JCO.2010.31.4047" target="_blank" rel="noreferrer">10.1200/JCO.2010.31.4047</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
2011
Backlog
Bartels U
Child
Cross-sectional Studies
Female
Health Status
Hendershot E
Hinds PS
Humans
Journal Article
Journal Of Clinical Oncology
Male
Neoplasms/physiopathology/psychology
Parents
Psychology
Quality Of Life
Questionnaires
Sung L
Tomlinson D
-
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/10.1177/1049909113497419" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049909113497419</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Predictors of Symptoms and Site of Death in Pediatric Palliative Patients With Cancer at End of Life
Publisher
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The American Journal Of Hospice & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
end of life; decision making; cancer; site of death; treatment choice
Creator
An entity primarily responsible for making the resource
Schindera C; Tomlinson D; Bartels U; Gillmeister Biljana; Alli A; Sung L
Description
An account of the resource
OBJECTIVE: To describe how preferences and treatment influence symptoms at end of life and site of death in pediatric cancer. METHODS: We included 61 pediatric palliative patients with cancer whose parents previously participated in a study that elicited preferences for aggressive chemotherapy versus supportive care alone and who subsequently died. Main outcomes were severe pain and dyspnea proximal to death and site of death. RESULTS: Choice of aggressive chemotherapy predicted significantly more severe pain (odds ratio [OR] 3.1, 95% confidence interval [CI] 1.0-9.6; P = .049). Intravenous chemotherapy 4 weeks before death predicted severe dyspnea (OR 15.8, 95% CI 3.7-67.5; P < .001) and death outside the home (OR 0.3, 95% CI 0.1-0.9; P = .038). CONCLUSIONS: Parental choice of aggressive chemotherapy and more aggressive treatment proximal to death predicted more pain, dyspnea, and death in hospital. Strategies to improve quality of life are needed.
2013-07
Identifier
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<a href="http://doi.org/10.1177/1049909113497419" target="_blank" rel="noreferrer">10.1177/1049909113497419</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
2013
Alli A
Backlog
Bartels U
Cancer
Decision Making
End Of Life
Gillmeister Biljana
Journal Article
Schindera C
site of death
Sung L
The American Journal of Hospice & Palliative Care
Tomlinson D
treatment choice