1
40
5
-
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
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URL Address
<a href="http://doi.org/10.1200/JCO.2007.15.2835" target="_blank" rel="noreferrer">http://doi.org/10.1200/JCO.2007.15.2835</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
Impact of caring for a child with cancer on parents' health-related quality of life
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
2008
Subject
The topic of the resource
Child; Female; Humans; Male; Canada; Questionnaires; Health Status; quality of life; adolescent; Preschool; Caregivers/psychology; infant; Parents/psychology; Neoplasms/nursing
Creator
An entity primarily responsible for making the resource
Klassen AF; Klaassen R; Dix D; Pritchard S; Yanofsky R; O'Donnell ME; Scott A; Sung L
Description
An account of the resource
PURPOSE: To compare the health-related quality of life (QOL) of parents of children who are undergoing treatment for cancer with that of Canadian population norms and to identify important parent and child predictors of parental QOL. PATIENTS AND METHODS: A total of 411 respondents of 513 eligible parents were recruited from five pediatric oncology centers in Canada between November 2004 and February 2007. Parents were asked to complete a questionnaire booklet that included a measure of adult QOL (SF-36), a measure of child health status (functional status IIR), and questions to assess health-promoting self-care actions (eg, sleep, diet, and exercise habits) and characteristics of the child with cancer (eg, relapse status, time since diagnosis, prognosis, treatment intensity). RESULTS: Compared with population norms, parents of children with cancer reported poorer physical and psychosocial QOL in all psychosocial domains (effect sizes range, -0.71 to -1.58) and in most physical health domains (effect sizes range, -0.08 to -0.63). Parent characteristics associated with better parental QOL included better eating, exercise and sleep habits, younger age, and higher income. Child characteristics associated with better parental QOL included better child health status (functional status IIR scores), lower treatment intensity, and longer time since diagnosis. CONCLUSION: Parents of children with cancer report poorer QOL compared with population norms. Interventions directed at parents should be included as part of the treatment plan for a child with cancer. Modifiable variables associated with poorer parental QOL, such as sleep quality and diet and exercise habits, indicate those parents most likely to experience poor QOL and may be potential areas for intervention.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JCO.2007.15.2835" target="_blank" rel="noreferrer">10.1200/JCO.2007.15.2835</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
Backlog
Canada
Caregivers/psychology
Child
Dix D
Female
Health Status
Humans
Infant
Journal Article
Journal Of Clinical Oncology
Klaassen R
Klassen AF
Male
Neoplasms/nursing
O'Donnell ME
Parents/psychology
Preschool
Pritchard S
Quality Of Life
Questionnaires
Scott A
Sung L
Yanofsky R
-
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/10.1017/s1478951504040477" target="_blank" rel="noreferrer">http://doi.org/10.1017/s1478951504040477</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
At the crossroads: making the transition to hospice
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Female; Humans; Male; Adult; Parent-Child Relations; Interpersonal Relations; Questionnaires; Aged; Middle Aged; Family Relations; Non-U.S. Gov't; Research Support; U.S. Gov't; Caregivers/psychology; decision making; Connecticut; Palliative Care/psychology; Narration; Hospice Care/psychology; Neoplasms/nursing; Non-P.H.S.
Creator
An entity primarily responsible for making the resource
Schulman-Green D; McCorkle R; Curry L; Cherlin E; Johnson-Hurzeler R; Bradley E
Description
An account of the resource
OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice declined 27%, from 26 to 19 days. In our prior study of 206 patients diagnosed with terminal cancer and using hospice, we found that one-third enrolled with hospice within 1 week prior to death. Late hospice enrollment can have deleterious effects on patients and their family members. The aim of the present study was to characterize common experiences of patients and primary family caregivers as they transition to hospice, focusing on caregiver perceptions of factors that might contribute to delays in hospice enrollment. METHODS: We conducted in-depth interviews with a purposive sample of 12 caregivers selected from a population of primary family caregivers of patients with terminal cancer who enrolled with hospice in Connecticut between September 2000 and September 2001. Respondents represented different ages, genders, and kinship relationships with patients. Respondents were asked about the patient's care trajectory, how they first learned about hospice, and their experiences as they transitioned to hospice. NUD*IST software was used for qualitative data coding and analysis. RESULTS: Constant comparative analysis identified three themes common to the experience of transitioning to hospice: (1) caregivers' acceptance of the impending death, (2) challenges in negotiating the health care system across the continuum of care, and (3) changing patient-family dynamics. SIGNIFICANCE OF RESULTS: Identification of these themes from the caregivers' perspective generates hypotheses about potential delays in hospice and may ultimately be useful in the design of interventions that are consistent with caregivers' needs.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/s1478951504040477" target="_blank" rel="noreferrer">10.1017/s1478951504040477</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
2004
Adult
Aged
Backlog
Bradley E
Caregivers/psychology
Cherlin E
Connecticut
Curry L
Decision Making
Family Relations
Female
Hospice Care/psychology
Humans
Interpersonal Relations
Johnson-Hurzeler R
Journal Article
Male
McCorkle R
Middle Aged
Narration
Neoplasms/nursing
Non-P.H.S.
Non-U.S. Gov't
Palliative & Supportive Care
Palliative Care/psychology
Parent-child Relations
Questionnaires
Research Support
Schulman-Green D
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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12362125" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12362125</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
Exploring documentation of end-of-life care of children with cancer
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; Male; Disease Progression; Child Psychology; Medical Records; adolescent; Preschool; infant; Palliative Care/psychology; Human; Terminal Care/psychology; Neoplasms/nursing
Creator
An entity primarily responsible for making the resource
De Graves SD; Aranda S
Description
An account of the resource
This article presents the findings of a study that explored documentation surrounding the end-of-life care of children with cancer. An in-depth history audit of 18 children with cancer, who died from disease progression at a single tertiary paediatric centre during 1999, was performed to explore the extent and the ways in which the shift from cure to palliation was reflected in the child's medical record. The study found that while physical aspects of care were documented there was little evidence of the human-to-human aspects of care or processes of decision-making when cure was no longer a possibility. Relapse and disease progression were identified as critical junctures for families and health professionals and an important area for future research. Further, the medical records documented ill-defined periods of palliation, with the child's approaching death appearing as a gradual awareness rather than a distinct shift in goals of care from cure to palliation.
2002
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
2002
Adolescent
Aranda S
Backlog
Child
Child Psychology
De Graves SD
Disease Progression
Female
Human
Infant
International Journal of Palliative Nursing
Journal Article
Male
Medical Records
Neoplasms/nursing
Palliative Care/psychology
Preschool
Terminal Care/psychology
-
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/hsw/24.1.57" target="_blank" rel="noreferrer">http://doi.org/10.1093/hsw/24.1.57</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
Preparation for oncology settings: what hospice social workers say they need
Publisher
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Health & Social Work
Date
A point or period of time associated with an event in the lifecycle of the resource
1999
Subject
The topic of the resource
Humans; Attitude of Health Personnel; Cooperative Behavior; Health Services Research; Needs Assessment; Inservice Training; Florida; Professional Competence; patient care team; Neoplasms/nursing; Hospice Care/manpower/methods; Oncologic Nursing/education/manpower; Social Work/education
Creator
An entity primarily responsible for making the resource
Kovacs PJ; Bronstein LR
Description
An account of the resource
According to recent data, 78 percent of hospice social workers' direct practice hours are spent with patients and families diagnosed with terminal cancer. A national sample of 108 hospice social workers participated in an exploratory study investigating the influence of their formal academic training, informal on-the-job training, and related professional and personal experiences on their preparation for oncology social work. Findings suggest that social workers view both the generalist or core courses as well as the specialist and elective courses as important in preparing them for oncology social work. In addition, on-the-job training focusing on medical terminology, interdisciplinary, collaboration, death and dying and the integration of personal experiences are important for continuing growth and success in this work. Implications for social work practice, research, and formal and informal educational opportunities are discussed.
1999
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/hsw/24.1.57" target="_blank" rel="noreferrer">10.1093/hsw/24.1.57</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
1999
Attitude Of Health Personnel
Backlog
Bronstein LR
Cooperative Behavior
Florida
Health & Social Work
Health Services Research
Hospice Care/manpower/methods
Humans
Inservice Training
Journal Article
Kovacs PJ
Needs Assessment
Neoplasms/nursing
Oncologic Nursing/education/manpower
Patient Care Team
Professional Competence
Social Work/education
-
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 2016 List
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
Perceptions Of The Pediatric Hospice Experience Among English- And Spanish-speaking Families
Publisher
An entity responsible for making the resource available
Journal Of 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
Adolescent; Adult; Attitude To Death/ethnology; Caregivers/psychology; Child; Child Preschool; Communication; Ethnic Groups/psychology; European Continental Ancestry; Group/psychology; Family/psychology; Female; Hispanic Americans/psychology; Hospice Care/psychology; Humans; Infant; Male; Middle Aged; Neoplasms/nursing; Neoplasms/psychology; Young Adult
Creator
An entity primarily responsible for making the resource
Thienprayoon R; Marks E; Funes M; Martinez-Puente LM; Winick N; Lee SC
Description
An account of the resource
OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the hospice experience in children with cancer, and to explore how race/ethnicity impacts this experience.
STUDY DESIGN:
We held 20 semistructured interviews with 34 caregivers of children who died of cancer and used hospice. Interviews were conducted in the caregivers' primary language: 12 in English and 8 in Spanish. Interviews were recorded, transcribed, and analyzed using accepted qualitative methods.
RESULTS:
Both English and Spanish speakers described the importance of honest, direct communication by medical providers, and anxieties surrounding the expectation of the moment of death. Five English-speaking families returned to the hospital because of unsatisfactory symptom management and the need for additional supportive services. Alternatively, Spanish speakers commonly stressed the importance of being at home and did not focus on symptom management. Both groups invoked themes of caregiver appraisal, but English-speaking caregivers more commonly discussed themes of financial hardship and fear of insurance loss, while Spanish-speakers focused on difficulties of bedside caregiving and geographic separation from family.
CONCLUSIONS:
The intense grief associated with the loss of a child creates shared experiences, but Spanish- and English-speaking parents describe their hospice experiences in different ways. Additional studies in pediatric hospice care are warranted to improve the care we provide to children at the end of life.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1089/jpm.2015.0137
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
Adolescent
Adult
Attitude To Death/ethnology
Caregivers/psychology
Child
Child Preschool
Communication
Ethnic Groups/psychology
European Continental Ancestry
Family/psychology
Female
Funes M
Group/psychology
Hispanic Americans/psychology
Hospice Care/psychology
Humans
Infant
Journal of Palliative Medicine
Lee SC
Male
Marks E
Martinez-Puente LM
Middle Aged
Neoplasms/nursing
Neoplasms/psychology
October 2016 List
Thienprayoon R
Winick N
Young Adult