1
40
13
-
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/10.1001/jama.294.14.1810" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.294.14.1810</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
Palliative sedation in dying patients: "we turn to it when everything else hasn't worked"
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Family; U.S. Gov't; PedPal Lit; Conscious Sedation Euthanasia; Active Humans Hypnotics and Sedatives/administration & dosage Myoclonus/therapy Pain; and emotional issues they raise.; and health care workers can all benefit from talking about the complex medical; as well as to the medical and nursing staff; clinicians must understand and document which actions are consistent with an intention to relieve symptoms rather than to hasten death. The patient or family should agree with plans for palliative sedation. The attending physician needs to explain to them; developed myoclonus. After other approaches proved ineffective; ethical; Extramural Research Support; Intractable/therapyPalliative Care Physician-Patient Relations Research Support; N.I.H.; Non-U.S. Gov't Research Support; P.H.S.Terminal Care Unconsciousness%X Despite skilled palliative care; palliative sedation was an option of last resort. The doctrine of double effect; permits physicians to provide high doses of opioids and sedatives to relieve suffering; provided that the intention is not to cause the patient's death and that certain other conditions are met. Such high doses are permissible even if the risk of hastening death is foreseen. Because intention plays a key role in this doctrine; receiving high doses of opioids administered to relieve pain; some dying patients experience distressing symptoms that cannot be adequately relieved. A patient with metastatic breast cancer; the details of care and the justification for palliative sedation. Because cases involving palliative sedation are emotionally stressful; the patient; the traditional justification for palliative sedation
Creator
An entity primarily responsible for making the resource
Lo B; Rubenfeld G
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.294.14.1810" target="_blank" rel="noreferrer">10.1001/jama.294.14.1810</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
Active Humans Hypnotics and Sedatives/administration & dosage Myoclonus/therapy Pain
and emotional issues they raise.
and health care workers can all benefit from talking about the complex medical
as well as to the medical and nursing staff
Backlog
clinicians must understand and document which actions are consistent with an intention to relieve symptoms rather than to hasten death. The patient or family should agree with plans for palliative sedation. The attending physician needs to explain to them
Conscious Sedation Euthanasia
developed myoclonus. After other approaches proved ineffective
ethical
Extramural Research Support
Family
Intractable/therapyPalliative Care Physician-Patient Relations Research Support
JAMA
Journal Article
Lo B
N.I.H.
Non-U.S. Gov't Research Support
P.H.S.Terminal Care Unconsciousness%X Despite skilled palliative care
palliative sedation was an option of last resort. The doctrine of double effect
PedPal Lit
permits physicians to provide high doses of opioids and sedatives to relieve suffering
provided that the intention is not to cause the patient's death and that certain other conditions are met. Such high doses are permissible even if the risk of hastening death is foreseen. Because intention plays a key role in this doctrine
receiving high doses of opioids administered to relieve pain
Rubenfeld G
some dying patients experience distressing symptoms that cannot be adequately relieved. A patient with metastatic breast cancer
the details of care and the justification for palliative sedation. Because cases involving palliative sedation are emotionally stressful
the patient
the traditional justification for palliative sedation
U.S. Gov't
-
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/10.1001/jama.294.3.359" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.294.3.359</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
Beyond advance directives: importance of communication skills at the end of life
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Communication; U.S. Gov't; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Advance Directives Colonic Neoplasms/secondary/therapy; Decision Making Humans Interprofessional Relations Liver Neoplasms/secondary/therapy Male Middle Aged Palliative Care Pancreatic Neoplasms/pathology/therapy; Non-P.H.S. Research Support; P.H.S.Terminal Care; Physician-Patient Relations Research Support
Creator
An entity primarily responsible for making the resource
Tulsky JA
Description
An account of the resource
Patients and their families struggle with myriad choices concerning medical treatments that frequently precede death. Advance directives have been proposed as a tool to facilitate end-of-life decision making, yet frequently fail to achieve this goal. In the context of the case of a man with metastatic cancer for whom an advance directive was unable to prevent a traumatic death, I review the challenges in creating and implementing advance directives, discuss factors that can affect clear decision making; including trust, uncertainty, emotion, hope, and the presence of multiple medical providers; and offer practical suggestions for physicians. Advance care planning remains a useful tool for approaching conversations with patients about the end of life. However, such planning should occur within a framework that emphasizes responding to patient and family emotions and focuses more on goals for care and less on specific treatments.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.294.3.359" target="_blank" rel="noreferrer">10.1001/jama.294.3.359</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
2005
Advance Directives Colonic Neoplasms/secondary/therapy
Backlog
Communication
Decision Making Humans Interprofessional Relations Liver Neoplasms/secondary/therapy Male Middle Aged Palliative Care Pancreatic Neoplasms/pathology/therapy
Extramural Research Support
JAMA
Journal Article
N.I.H.
Non-P.H.S. Research Support
Non-U.S. Gov't Research Support
P.H.S.Terminal Care
PedPal Lit
Physician-Patient Relations Research Support
Tulsky JA
U.S. Gov't
-
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/cncr.20846" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.20846</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
Five-day courses of irinotecan as palliative therapy for patients with neuroblastoma
Publisher
An entity responsible for making the resource available
Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; 15 patients had stable disease; 2 (n=3); 2 (n=9); 22 (n=1 patient); 3 (n=1); 4 (n=2(TRUNCATED); 4 (n=6); 7 (n=1 patient); 7 were not evaluable for response because of concurrent radiotherapy; Adolescent Adult Antineoplastic Agents; although they did not have progressive disease (PD) after receiving 1 (n=10); and 1 patient had a major response. Twenty-one patients had PD after 1 (n=3; and myelosuppressive effects were readily managed. Hospitalizations were limited to three patients with bacteremia. Twenty-three patients had a change in therapy; diarrheal; Intravenous Male Nervous System Neoplasms/drug therapy Neuroblastoma/drug therapyPalliative Care Quality of Life Research Support; or 24 (n=1) courses. The most common reasons for changing treatment were to intensify retrieval therapy or to pursue immunotherapy. Of those 23 patients; P.H.S. Retrospective Studies Treatment Outcome; Phytogenic/administration & dosage/adverse effects Camptothecin/administration & dosage/adverse effects/analogs & derivatives Child Child; Preschool Female Humans Infusions
Creator
An entity primarily responsible for making the resource
Kushner BH; Kramer K; Modak S; Cheung NK
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/cncr.20846" target="_blank" rel="noreferrer">10.1002/cncr.20846</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
15 patients had stable disease
2 (n=3)
2 (n=9)
2005
22 (n=1 patient)
3 (n=1)
4 (n=2(TRUNCATED)
4 (n=6)
7 (n=1 patient)
7 were not evaluable for response because of concurrent radiotherapy
Adolescent Adult Antineoplastic Agents
although they did not have progressive disease (PD) after receiving 1 (n=10)
and 1 patient had a major response. Twenty-one patients had PD after 1 (n=3
and myelosuppressive effects were readily managed. Hospitalizations were limited to three patients with bacteremia. Twenty-three patients had a change in therapy
Backlog
Cancer
Cheung NK
diarrheal
Intravenous Male Nervous System Neoplasms/drug therapy Neuroblastoma/drug therapyPalliative Care Quality of Life Research Support
Journal Article
Kramer K
Kushner BH
Modak S
Non-U.S. Gov't Research Support
or 24 (n=1) courses. The most common reasons for changing treatment were to intensify retrieval therapy or to pursue immunotherapy. Of those 23 patients
P.H.S. Retrospective Studies Treatment Outcome
PedPal Lit
Phytogenic/administration & dosage/adverse effects Camptothecin/administration & dosage/adverse effects/analogs & derivatives Child Child
Preschool Female Humans Infusions
U.S. Gov't
-
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/10.1007/s11136-004-4714-y" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11136-004-4714-y</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
Proxy assessment of quality of life in pediatric clinical trials: application of the Health Utilities Index 3
Publisher
An entity responsible for making the resource available
Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
symptoms; U.S. Gov't; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Adolescent ChildClinical Trials Female Health Status Humans Leukemia/drug therapy/physiopathology/psychology MalePediatricsProxy Quality of Life/psychology Research Support; domains specific and sensitive to both disease and treatment; P.H.S.Sickness Impact Profile%X BACKGROUND: With increased cure rates; pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease; the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined
Creator
An entity primarily responsible for making the resource
Cox CL; Lensing S; Rai SN; Hinds P; Burghen E; Pui CH
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11136-004-4714-y" target="_blank" rel="noreferrer">10.1007/s11136-004-4714-y</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
Adolescent ChildClinical Trials Female Health Status Humans Leukemia/drug therapy/physiopathology/psychology MalePediatricsProxy Quality of Life/psychology Research Support
Backlog
Burghen E
Cox CL
domains specific and sensitive to both disease and treatment
Extramural Research Support
Hinds P
Journal Article
Lensing S
N.I.H.
Non-U.S. Gov't Research Support
P.H.S.Sickness Impact Profile%X BACKGROUND: With increased cure rates
pediatric oncology protocols increasingly seek to document the impact of treatment on patients' disease
PedPal Lit
Pui CH
Quality of Life Research
Rai SN
Symptoms
the proxy respondents evaluated the ease of use of the instrument and the data quality. RESULTS: As patients' health status declined
U.S. Gov't
-
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.2005.05.007" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2005.05.007</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
Ketamine use for reduction of opioid tolerance in a 5-year-old girl with end-stage abdominal neuroblastoma
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
2005
Subject
The topic of the resource
U.S. Gov't; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Abdominal Neoplasms/complications Abdominal Pain/etiology/prevention & control Analgesics; Dissociative/administration & dosage Child; Opioid/administration & dosage Anesthetics; P.H.S. Terminal Care/methods Treatment Outcome; Preschool Drug Administration Schedule Drug Combinations Drug Tolerance Female Humans Ketamine/administration & dosage Neuroblastoma/complications Palliative Care/methods Research Support
Creator
An entity primarily responsible for making the resource
Anghelescu DL; Oakes L
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2005.05.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2005.05.007</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
Abdominal Neoplasms/complications Abdominal Pain/etiology/prevention & control Analgesics
Anghelescu DL
Backlog
Dissociative/administration & dosage Child
Extramural Research Support
Journal Article
Journal of Pain and Symptom Management
N.I.H.
Non-U.S. Gov't Research Support
Oakes L
Opioid/administration & dosage Anesthetics
P.H.S. Terminal Care/methods Treatment Outcome
PedPal Lit
Preschool Drug Administration Schedule Drug Combinations Drug Tolerance Female Humans Ketamine/administration & dosage Neuroblastoma/complications Palliative Care/methods Research Support
U.S. Gov't
-
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.soncn.2004.12.011" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.soncn.2004.12.011</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
Collaborative clinical research on end-of-life care in pediatric oncology
Publisher
An entity responsible for making the resource available
Seminars In Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
U.S. Gov't; Attitudes; PedPal Lit; Multi-site Ethics; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; Nursing Models; Adolescent Adolescent Psychology Attitude of Health Personnel Attitude to Death Attitude to Health Child Child Psychology Clinical Nursing Research/; organization & administration Communication Cooperative Behavior Decision Making Forecasting Health Knowledge; P.H.S. Terminal Care/organization & administration; Practice Health Priorities Humans Models; Psychological Neoplasms/nursing/psychology Oncologic Nursing/organization & administration Parents/psychology Pediatric Nursing/organization & administration Practice Guidelines Research Design Research Support
Creator
An entity primarily responsible for making the resource
Nuss SL; Hinds PS; LaFond DA
Description
An account of the resource
OBJECTIVES: To present an overview of research into end-of-life (EoL) care for pediatric patients with cancer and to describe research completed by a newly formed collaboration of researchers. DATA SOURCES: Professional group position papers and guidelines; research studies. CONCLUSION: Studies to date in pediatric EoL care used retrospective, descriptive, or pilot intervention designs, have been conducted in single-institution settings, and have included small numbers of patients. Most studies have explored perspectives of parents and health care professionals but have omitted the perspective of the dying child. IMPLICATIONS FOR NURSING PRACTICE: Advancing the science of EoL care will depend on intervention-based clinical trials that include the perspective of the dying child in addi tion to parents and health care professionals.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.soncn.2004.12.011" target="_blank" rel="noreferrer">10.1016/j.soncn.2004.12.011</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
2005
Adolescent Adolescent Psychology Attitude of Health Personnel Attitude to Death Attitude to Health Child Child Psychology Clinical Nursing Research/
Attitudes
Backlog
Extramural Research Support
Hinds PS
Journal Article
Lafond DA
Multi-site Ethics
N.I.H.
Non-U.S. Gov't Research Support
Nursing Models
Nuss SL
organization & administration Communication Cooperative Behavior Decision Making Forecasting Health Knowledge
P.H.S. Terminal Care/organization & administration
PedPal Lit
Practice Health Priorities Humans Models
Psychological Neoplasms/nursing/psychology Oncologic Nursing/organization & administration Parents/psychology Pediatric Nursing/organization & administration Practice Guidelines Research Design Research Support
Seminars In Oncology Nursing
U.S. Gov't
-
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/10.1093/jpepsy/jsi005" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsi005</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
Family functioning in school-age children with cystic fibrosis: an observational assessment of family interactions in the mealtime environment
Publisher
An entity responsible for making the resource available
Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Communication; U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; affect management; age-matched peers. Families were rated on overall family functioning and on six dimensions of the MICS: task accomplishment; and behavioral control. Moreover; and role allocation. RESULTS: Ratings for families of a child with CF were significantly lower than they were for comparison families on overall family functioning and on four of the six MICS dimensions: communication; as well as child-centered; behavior control; Child Cystic Fibrosis/psychology Family/psychologyFeeding Behavior Female HumansInterpersonal Relations Male Observation Research Support; interpersonal involvement; interventions to help families manage challenges presented during the family meal.; P.H.S.Social Environment Time Factors%X OBJECTIVE: To examine; the family system is negatively affected during mealtime. Dietary interventions need to address family-centered; using direct observation methodology
Creator
An entity primarily responsible for making the resource
Janicke DM; Mitchell MJ; Stark LJ
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsi005" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi005</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
affect management
age-matched peers. Families were rated on overall family functioning and on six dimensions of the MICS: task accomplishment
and behavioral control. Moreover
and role allocation. RESULTS: Ratings for families of a child with CF were significantly lower than they were for comparison families on overall family functioning and on four of the six MICS dimensions: communication
as well as child-centered
Backlog
behavior control
Child Cystic Fibrosis/psychology Family/psychologyFeeding Behavior Female HumansInterpersonal Relations Male Observation Research Support
Communication
interpersonal involvement
interventions to help families manage challenges presented during the family meal.
Janicke DM
Journal Article
Journal of Pediatric Psychology
Mitchell MJ
Non-U.S. Gov't Research Support
P.H.S.Social Environment Time Factors%X OBJECTIVE: To examine
PedPal Lit
Stark LJ
the family system is negatively affected during mealtime. Dietary interventions need to address family-centered
U.S. Gov't
using direct observation methodology
-
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/10.1093/jpepsy/jsi020" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsi020</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
Psychological research in childhood cancer: the Children's Oncology Group perspective
Publisher
An entity responsible for making the resource available
Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; access to adequate numbers of participants; and access to longitudinal cohorts. Barriers include cost; and ultimately prevent these effects by better diagnostic classification and targeted treatment. This focus should ultimately lead to translation of intervention research findings to standard of care in the larger childhood cancer community.; Child Humans Medical Oncology/methods Neoplasms/therapyPatient Care Team Psychology/methodsResearch Research Support; competition for limited resources; lessen the impact of late effects of treatment; multicenter clinical-trial cooperative groups offer opportunities for psychological research that may be impossible at local institutions. Benefits include collaboration with other disciplines; P.H.S.%X OBJECTIVE: To review benefits and barriers to psychological research on childhood cancer in multidisciplinary; shared research infrastructure; standardization and quality control
Creator
An entity primarily responsible for making the resource
Armstrong FD; Reaman GH
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsi020" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi020</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
access to adequate numbers of participants
and access to longitudinal cohorts. Barriers include cost
and ultimately prevent these effects by better diagnostic classification and targeted treatment. This focus should ultimately lead to translation of intervention research findings to standard of care in the larger childhood cancer community.
Armstrong FD
Backlog
Child Humans Medical Oncology/methods Neoplasms/therapyPatient Care Team Psychology/methodsResearch Research Support
competition for limited resources
Journal Article
Journal of Pediatric Psychology
lessen the impact of late effects of treatment
multicenter clinical-trial cooperative groups offer opportunities for psychological research that may be impossible at local institutions. Benefits include collaboration with other disciplines
Non-U.S. Gov't Research Support
P.H.S.%X OBJECTIVE: To review benefits and barriers to psychological research on childhood cancer in multidisciplinary
PedPal Lit
Reaman GH
shared research infrastructure
standardization and quality control
U.S. Gov't
-
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/10.1177/1043454206287301" target="_blank" rel="noreferrer">http://doi.org/10.1177/1043454206287301</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
Personal Web home pages of adolescents with cancer: self-presentation, information dissemination, and interpersonal connection
Publisher
An entity responsible for making the resource available
Journal Of Pediatric 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
U.S. Gov't; Adaptation; PedPal Lit; Non-U.S. Gov't Research Support; Adolescent Psychology Adult Attitude to Health Autobiography Body Image; Communication Female Helping Behavior Humans Information Dissemination Internet/; Interpersonal Relations Life Change Events Male Narration Neoplasms/; Non-P.H.S.Self Concept Social Support; Psychological Adolescent Adolescent Behavior/psychology; psychology Nursing Methodology Research Peer Group Research Support; utilization
Creator
An entity primarily responsible for making the resource
Suzuki LK; Beale IL
Description
An account of the resource
The content of personal Web home pages created by adolescents with cancer is a new source of information about this population of potential benefit to oncology nurses and psychologists. Individual Internet elements found on 21 home pages created by youths with cancer (14-22 years old) were rated for cancer-related self-presentation, information dissemination, and interpersonal connection. Examples of adolescents' online narratives were also recorded. Adolescents with cancer used various Internet elements on their home pages for cancer-related self-presentation (eg, welcome messages, essays, personal history and diary pages, news articles, and poetry), information dissemination (e.g., through personal interest pages, multimedia presentations, lists, charts, and hyperlinks), and interpersonal connection (eg, guestbook entries). Results suggest that various elements found on personal home pages are being used by a limited number of young patients with cancer for self-expression, information access, and contact with peers.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1043454206287301" target="_blank" rel="noreferrer">10.1177/1043454206287301</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
Adolescent Psychology Adult Attitude to Health Autobiography Body Image
Backlog
Beale IL
Communication Female Helping Behavior Humans Information Dissemination Internet/
Interpersonal Relations Life Change Events Male Narration Neoplasms/
Journal Article
Journal Of Pediatric Oncology Nursing
Non-P.H.S.Self Concept Social Support
Non-U.S. Gov't Research Support
PedPal Lit
Psychological Adolescent Adolescent Behavior/psychology
psychology Nursing Methodology Research Peer Group Research Support
Suzuki LK
U.S. Gov't
utilization
-
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/10.1177/1049732305276754" target="_blank" rel="noreferrer">http://doi.org/10.1177/1049732305276754</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
Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed
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
2005
Subject
The topic of the resource
U.S. Gov't; Adaptation; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions; P.H.S. Schools; parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards .; Preschool Chronic Disease Comparative Study Cost of IllnessDevelopmental DisabilitiesDisabled Children Family/psychology Humans Qualitative Research Research Support; Psychological Caregivers/psychology ChildChild Rearing Child; severely affecting how families organized and managed their daily lives; with the result that families did not fit currently established attributes of normalization. Instead
Creator
An entity primarily responsible for making the resource
Rehm RS; Bradley JF
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049732305276754" target="_blank" rel="noreferrer">10.1177/1049732305276754</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
Adaptation
Backlog
Bradley JF
but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions
Extramural Research Support
Journal Article
N.I.H.
Non-U.S. Gov't Research Support
P.H.S. Schools
parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards .
PedPal Lit
Preschool Chronic Disease Comparative Study Cost of IllnessDevelopmental DisabilitiesDisabled Children Family/psychology Humans Qualitative Research Research Support
Psychological Caregivers/psychology ChildChild Rearing Child
Qualitative Health Research
Rehm RS
severely affecting how families organized and managed their daily lives
U.S. Gov't
with the result that families did not fit currently established attributes of normalization. Instead
-
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/10.5014/ajot.59.1.57" target="_blank" rel="noreferrer">http://doi.org/10.5014/ajot.59.1.57</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
Qualities of caregiver-child interaction during daily activities of children born very low birth weight with and without white matter disorder
Publisher
An entity responsible for making the resource available
American Journal Of Occupational Therapy
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; Non-P.H.S. Research Support; Newborn Infant; -.67; .35; Activities of Daily Living/psychology Brain Diseases/congenital/psychology Caregivers/psychology Child Behavior/psychology Child; and child engagement. RESULTS: There were no significant differences between groups for the average caregiver and child ratings. However; and child gender. Ten expert clinicians used videotapes to rate behaviors of caregivers and their 30-month-old children engaging in dressing and snack activities. Correlations between ratings of three qualities were examined: caregiver directiveness; caregiver engagement; correlations between caregiver directiveness and caregiver engagement ranged across the three groups from greatest to least biological risk (i.e.; correlations between the caregiver qualities of directiveness and engagement and child engagement were r= .62 and -.69; ethnicity; maternal education; P.H.S. Videotape Recording; Premature/psychology Infant; Preschool Comparative Study Data Collection/methods Educational Status Female Humans Infant; r= .63; representing three levels of child biological risk; respectively. In contrast; respectively). In the full- term group; Very Low Birth Weight/psychologyInterpersonal Relations Male Pregnancy Research Support; were matched on birth history; white matter disorde(TRUNCATED)
Creator
An entity primarily responsible for making the resource
Kadlec MB; Coster W; Tickle-Degnen L; Beeghly M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5014/ajot.59.1.57" target="_blank" rel="noreferrer">10.5014/ajot.59.1.57</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
Activities of Daily Living/psychology Brain Diseases/congenital/psychology Caregivers/psychology Child Behavior/psychology Child
American Journal Of Occupational Therapy
and child engagement. RESULTS: There were no significant differences between groups for the average caregiver and child ratings. However
and child gender. Ten expert clinicians used videotapes to rate behaviors of caregivers and their 30-month-old children engaging in dressing and snack activities. Correlations between ratings of three qualities were examined: caregiver directiveness
Backlog
Beeghly M
caregiver engagement
correlations between caregiver directiveness and caregiver engagement ranged across the three groups from greatest to least biological risk (i.e.
correlations between the caregiver qualities of directiveness and engagement and child engagement were r= .62 and -.69
Coster W
Ethnicity
Journal Article
Kadlec MB
maternal education
Newborn Infant
Non-P.H.S. Research Support
Non-U.S. Gov't Research Support
P.H.S. Videotape Recording
PedPal Lit
Premature/psychology Infant
Preschool Comparative Study Data Collection/methods Educational Status Female Humans Infant
r= .63
representing three levels of child biological risk
respectively. In contrast
respectively). In the full- term group
Tickle-Degnen L
U.S. Gov't
Very Low Birth Weight/psychologyInterpersonal Relations Male Pregnancy Research Support
were matched on birth history
white matter disorde(TRUNCATED)
-
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/10.1023/b:qure.0000021697.43165.87" target="_blank" rel="noreferrer">http://doi.org/10.1023/b:qure.0000021697.43165.87</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
Quality of life as conveyed by pediatric patients with cancer
Publisher
An entity responsible for making the resource available
Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
adolescent; U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; psychology Questionnaires Research Support; Adolescent Psychology Cancer Care Facilities Child; Child Psychology Female Humans Interviews Male Neoplasms/physiopathology/; methods Quality of Life/; P.H.S. Self Assessment (Psychology); psychology/therapy Pediatrics Pilot Projects Psychometrics/instrumentation/; Sickness Impact Profile Tennessee; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.
Creator
An entity primarily responsible for making the resource
Hinds PS; Gattuso JS; Fletcher A; Baker E; Coleman B; Jackson T; Jacobs-Levine A; June D; Rai SN; Lensing S; Pui CH
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1023/b:qure.0000021697.43165.87" target="_blank" rel="noreferrer">10.1023/b:qure.0000021697.43165.87</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
2004
2004
Adolescent
Adolescent Psychology Cancer Care Facilities Child
Backlog
Baker E
Child Psychology Female Humans Interviews Male Neoplasms/physiopathology/
Coleman B
Fletcher A
Gattuso JS
Hinds PS
Jackson T
Jacobs-Levine A
Journal Article
June D
Lensing S
methods Quality of Life/
Non-U.S. Gov't Research Support
P.H.S. Self Assessment (Psychology)
PedPal Lit
psychology Questionnaires Research Support
psychology/therapy Pediatrics Pilot Projects Psychometrics/instrumentation/
Pui CH
Quality of Life Research
Rai SN
Sickness Impact Profile Tennessee
the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains
this definition may ensure the completeness and sensitivity of these important instruments.
U.S. Gov't
-
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/10.1080/01460860490497985" target="_blank" rel="noreferrer">http://doi.org/10.1080/01460860490497985</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
Parents' perceptions of nurses' caregiving behaviors in the pediatric intensive care unit
Publisher
An entity responsible for making the resource available
Issues Compr Pediatr Nurs
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; Adult Attitude to Health Caregivers/psychology Child Child; and also helps to inform interventions to improve family-centered care in the PICU.; and protecting. Parents' reports suggest that the best nursing behaviors are those that facilitate and complement critical aspects of the parent al role; caring; Hospital/psychology Parents/psychology Pediatric Nursing/standardsProfessional-Family Relations Quality of Health Care Research Support; namely showing affection; Newborn Intensive Care Units; P.H.S.Social Perception; Pediatric/standards Male Midwestern United States Nursing Staff; Preschool Female Humans Infant Infant; thus reinforcing family integrity during a time of turmoil and uncertainty. Incorporating this knowledge into practice contributes to nurses' understanding of PICU hospitalization as a family event; watching
Creator
An entity primarily responsible for making the resource
Harbaugh BL; Tomlinson PS; Kirschbaum M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/01460860490497985" target="_blank" rel="noreferrer">10.1080/01460860490497985</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
2004
2004
Adult Attitude to Health Caregivers/psychology Child Child
and also helps to inform interventions to improve family-centered care in the PICU.
and protecting. Parents' reports suggest that the best nursing behaviors are those that facilitate and complement critical aspects of the parent al role
Backlog
caring
Harbaugh BL
Hospital/psychology Parents/psychology Pediatric Nursing/standardsProfessional-Family Relations Quality of Health Care Research Support
Issues Compr Pediatr Nurs
Journal Article
Kirschbaum M
namely showing affection
Newborn Intensive Care Units
Non-U.S. Gov't Research Support
P.H.S.Social Perception
Pediatric/standards Male Midwestern United States Nursing Staff
PedPal Lit
Preschool Female Humans Infant Infant
thus reinforcing family integrity during a time of turmoil and uncertainty. Incorporating this knowledge into practice contributes to nurses' understanding of PICU hospitalization as a family event
Tomlinson PS
U.S. Gov't
watching