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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/10.1542/peds.2007-2681" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2007-2681</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
Cancer-related symptoms most concerning to parents during the last week and last day of their child's life
Publisher
An entity responsible for making the resource available
Pediatrics
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; Palliative Care; Terminal Care; Adult; Parents; Death; Time; adolescent; Preschool; infant; Health; Parents/psychology; Neoplasms/physiopathology/psychology/therapy
Creator
An entity primarily responsible for making the resource
Pritchard M; Burghen E; Srivastava DK; Okuma J; Anderson L; Powell B; Furman WL; Hinds PS
Description
An account of the resource
OBJECTIVE: Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it can cause the child's parents. The purpose of this study was to identify the cancer-related symptoms that most concerned parents during the last days of their child's life and the strategies parents identified as helpful with their child's care. METHODS: Sixty-five parents of 52 children who had died a cancer-related death within the previous 6 to 10 months participated in telephone interviews. Eligibility criteria included being the parent or guardian of a child aged 0 to 21 years who had died within the previous 6 to 10 months after being treated at a pediatric cancer center, having been with their child during the last week of the child's life, speaking English, being willing to participate, and having access to a telephone. RESULTS: Eighteen symptoms of concern were identified as occurring during their child's final week and final day of life. The most frequently reported symptoms at both times included changes in behavior, changes in appearance, pain, weakness and fatigue, and breathing changes. The proportion of reported symptoms did not differ according to patient gender, disease, or location of death (intensive care, elsewhere in the hospital, or home). The most helpful strategies used by health care professionals to assist the child or parents included giving pain and anxiety medications, spending time with the child or family, providing competent care, and giving advice. CONCLUSIONS: This knowledge can guide professionals in preparing parents for the symptoms that a child imminently dying of cancer is likely to experience and in providing care that will be helpful to parents.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2007-2681" target="_blank" rel="noreferrer">10.1542/peds.2007-2681</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
Adolescent
Adult
Anderson L
Backlog
Burghen E
Child
Death
Female
Furman WL
Health
Hinds PS
Humans
Infant
Journal Article
Male
Neoplasms/physiopathology/psychology/therapy
Okuma J
Palliative Care
Parents
Parents/psychology
Pediatrics
Powell B
Preschool
Pritchard M
Srivastava DK
Terminal Care
Time
-
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/10.1097/00002820-200104000-00007" target="_blank" rel="noreferrer">http://doi.org/10.1097/00002820-200104000-00007</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
End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines
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
2001
Subject
The topic of the resource
Female; Humans; Male; Terminal Care; Practice Guidelines as Topic; Professional-Family Relations; adolescent; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; social support; Neoplasms/nursing/psychology/therapy
Creator
An entity primarily responsible for making the resource
Hinds PS; Oakes L; Furman W; Quargnenti A; Olson MS; Foppiano P; Srivastava DK
Description
An account of the resource
Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare providers in making these decisions exist. The purpose of the work reported here was to use three sources (the findings of three studies on decision making in pediatric oncology, published literature, and recommendations from professional associations) to develop guidelines for end-of-life decision making in pediatric oncology. The study designs include a retrospective, descriptive design (Study 1); a prospective, descriptive design (Study 2); and a cross-sectional, descriptive design (Study 3). Settings for the pediatric oncology studies included a pediatric catastrophic illness research hospital located in the Midsouth (Studies 1 and 2); and that setting plus a children's hospital in Australia and one in Hong Kong (Study 3). Study samples included 39 guardians and 21 healthcare providers (Study 1); 52 parents, 10 adolescents, and 22 physicians (Study 2); and 43 parents (Study 3). All participants in the studies responded to six open-ended questions. A semantic content analysis technique was used to analyze all interview data. Four nurses independently coded each interview; interrater reliability per code ranged from 68% to 100% across studies. The most frequently reported influencing factors were "information on the health and disease status of the patient," "all curative options having been attempted," "trusting the healthcare team," and "feeling support from the healthcare provider." The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology. The guidelines offer assistance with end-of-life decision making in a structured manner that can be formally evaluated and individualized to meet patient and family needs.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00002820-200104000-00007" target="_blank" rel="noreferrer">10.1097/00002820-200104000-00007</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
2001
Adolescent
Backlog
Cancer Nursing
Death and Euthanasia
Decision Making
Empirical Approach
Female
Foppiano P
Furman W
Hinds PS
Humans
Journal Article
Male
Neoplasms/nursing/psychology/therapy
Oakes L
Olson MS
Practice Guidelines As Topic
Professional Patient Relationship
Professional-family Relations
Quargnenti A
Social Support
Srivastava DK
Terminal Care