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40
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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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
A name given to the resource
Predictors of Symptoms and Site of Death in Pediatric Palliative Patients With Cancer at End of Life
Publisher
An entity responsible for making the resource available
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
An unambiguous reference to the resource within a given context
<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
-
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/10.1177/0269216307077173" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216307077173</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 to participation in paediatric palliative care research: a review of the literature
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
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216307077173" target="_blank" rel="noreferrer">10.1177/0269216307077173</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
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
-
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.ejon.2005.11.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejon.2005.11.003</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
Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input
Publisher
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European Journal Of Oncology 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; Terminal Care; Attitude to Health; Questionnaires; Professional-Family Relations; Patient-Centered Care; Qualitative Research; Nurse's Role; Pediatric Nursing; Program Development; Needs Assessment; Patient Selection; Helping Behavior; Adaptation; Psychological; PedPal Lit; decision making; Parents/psychology; Neoplasms; social support; Quality of Life/psychology; Focus Groups/methods; Focus Groups/utilization; Morale; Nursing Methodology; Oncologic Nursing
Creator
An entity primarily responsible for making the resource
Tomlinson D; Capra M; Gammon J; Volpe J; Barrera M; Hinds PS; Bouffet E; Geenberg ML; Baruchel S; Llewellyn-Thomas HA; Sung L
Description
An account of the resource
The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejon.2005.11.003" target="_blank" rel="noreferrer">10.1016/j.ejon.2005.11.003</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
2006
Adaptation
Attitude To Health
Backlog
Barrera M
Baruchel S
Bouffet E
Capra M
Child
Decision Making
European Journal Of Oncology Nursing
Focus Groups/methods
Focus Groups/utilization
Gammon J
Geenberg ML
Helping Behavior
Hinds PS
Humans
Journal Article
Llewellyn-Thomas HA
Morale
Needs Assessment
Neoplasms
Nurse's Role
Nursing Methodology
Oncologic Nursing
Parents/psychology
Patient Selection
Patient-centered Care
Pediatric Nursing
PedPal Lit
Professional-family Relations
Program Development
Psychological
Qualitative Research
Quality Of Life/psychology
Questionnaires
Social Support
Sung L
Terminal Care
Tomlinson D
Volpe J
-
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
A name given to the resource
Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure
Publisher
An entity responsible for making the resource available
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2010.31.4047" target="_blank" rel="noreferrer">10.1200/JCO.2010.31.4047</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
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