2
40
65
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Title
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2019 Developing World List
Text
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Citation List Month
Developing World 2019 List
URL Address
<a href="http://doi.org/10.1016/j.ejon.2018.11.005" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ejon.2018.11.005</a>
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Title
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Symptoms and management of children with incurable cancer in mainland China
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European Journal of Oncology Nursing
Date
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2019
Subject
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Dnr; End-of-life care; Incurable tumor; Palliative care; Pediatric oncology; Retrospective; Terminal cancer
Creator
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Ye Z J; Zhang Z; Liang M Z; Liu X X; Sun Z; Zhao J J; Hu G Y; Yu Y L
Description
An account of the resource
PURPOSE: This study was designed to report information regarding symptomology of incurable pediatric cancer to promote proactive medicine and support for children and their families in the palliative phase in Mainland China. METHOD: A multi-center retrospective cohort study including 205 children who died from incurable cancer between June 2008 and September 2013 were analyzed. RESULTS: An incurable diagnosis was confirmed between 0 and 1726 (median, 279) days from initial diagnosis with death occurring between 1 and 239(median, 83) days. The most frequent symptoms were fatigue (93.7%), pain (87.3%), and poor appetite (76.1%). The earliest symptoms were pain and fatigue. Children with leukemia and lymphoma also complained early of nausea/vomiting, and children with solid tumors complained early of disturbed sleep. Later in the palliative phase, altered consciousness and seizures were found in children with central nervous system tumors and solid tumors, while children with leukemia and lymphoma were found to have fever, diarrhea, and bleeding. However, these symptoms only persisted for a short time. DNR discussions were held in 89 cases (43.4%) at a median of 37 (range, 4-178) days before death. A total of 154 patients (75.1%) died at home and 51 patients (24.9%) in the hospital. CONCLUSIONS: This study provides new knowledge about symptomology to health care professionals and parents of children in Mainland China. Given our results, an improved alternative care plan should be developed and implemented earlier to facilitate end-of-life planning.
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<a href="http://doi.org/10.1016/j.ejon.2018.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.ejon.2018.11.005</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).
2019
Developing World 2019 List
Dnr
End-of-life Care
European Journal Of Oncology Nursing
Hu G Y
Incurable tumor
Liang M Z
Liu X X
Palliative Care
Pediatric Oncology
Retrospective
Sun Z
Terminal Cancer
Ye Z J
Yu Y L
Zhang Z
Zhao J J
-
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.26981" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1002/pbc.26981</a>
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Title
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Sources of parental hope in pediatric oncology
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Pediatr Blood Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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palliative care; pediatric oncology; hope; communication; meaning
Creator
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Sisk BA; Kang TI; Mack JW
Description
An account of the resource
BACKGROUND: Hope is a multidimensional concept that is important for all parents of children with cancer. However, most work has focused on advanced cancer and poor prognoses. We examined hopes of all parents of children with cancer longitudinally during the first year of treatment. PROCEDURE: Prospective, longitudinal, questionnaire-based cohort study of parents and physicians of children with cancer at two academic pediatric hospitals. Parents reported on general sense of hopefulness and specific hopes at time of diagnosis (N = 374); a subset of parents (N = 164) were followed longitudinally at 4 and 12 months. RESULTS: Fifty-five percent of parents (N = 206/374) reported being extremely hopeful in general at baseline. Hopefulness did not significantly change over time, and most parents (51-58%) reported being extremely hopeful regardless of prognosis (P = 0.66). Most parents (N = 327/356) considered hope for cure to be an extremely important source of hope; most also reported hope that the child would feel loved (N = 328/356), that the child would have the best possible quality of life (N = 316/356), and that they would always do all they could for the child (N = 300/356). Hope for cure was slightly lower among parents of children with less than a 50% chance of cure at baseline (N = 53/63) when compared to those with better prognoses (moderately likely cure, N = 76/78; very likely cure, N = 198/215) (P = 0.02). CONCLUSIONS: Many hopes contribute to parental hopefulness, not just hope for cure. This hopefulness persists over time, even when the prognosis is poor. Clinicians should focus on supporting the myriad hopes that contribute to overall hopefulness.
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<a href="http://doi.org/%2010.1002/pbc.26981" target="_blank" rel="noreferrer noopener">10.1002/pbc.26981</a>
2018
Communication
Hope
Kang TI
Mack JW
Meaning
Oncology 2018 List
Palliative Care
Pediatr Blood Cancer
Pediatric Oncology
Sisk BA
-
Dublin Core
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1007/s00520-018-4100-x" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1007/s00520-018-4100-x</a>
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Title
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Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
Publisher
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Support Care Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Medical Records; Child; Palliative Care; Decision Making; Pediatric palliative care; Pediatric oncology; Decision-making; Only Child; Involvement of the child
Creator
An entity primarily responsible for making the resource
Rost M; Acheson E; Kuhne T; Ansari M; Pacurari N; Brazzola P; Niggli F; Elger BS; Wangmo T
Description
An account of the resource
PURPOSE: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care. METHODS: Using a standardized data extraction form, a retrospective review of medical records of deceased pediatric patients was conducted. The form captured information on demographics, diagnosis, relapse(s), treatments, decision-making during palliative care, and circumstances surrounding a child's death. RESULTS: For 170 patients, there was information on whether the child received palliative care. Among those, 38 cases (22%) did not receive palliative care. For 16 patients, palliative care began at diagnosis. The mean duration of palliative care was 145 days (Mdn = 89.5, SD = 183.4). Decision to begin palliative care was discussed solely with parent(s) in 60.9% of the cases. In 39.1%, the child was involved. These children were 13.6 years of age (SD = 4.6), whereas those not included were 7.16 years old (SD = 3.9). Leukemia patients were less likely to receive palliative care than the overall sample, and patients with CNS neoplasms received palliative care for a longer time than other patients. CONCLUSIONS: There are still high numbers of late or non-referrals, and even children older than 12 years were not involved in decision-making regarding palliative care. These results do not align with international organizational guidelines which recommend that palliative care should begin at diagnosis.
Identifier
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<a href="http://doi.org/%2010.1007/s00520-018-4100-x" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4100-x</a>
2018
Acheson E
Ansari M
Brazzola P
Child
Decision Making
Decision-making
Elger BS
Involvement of the child
Kuhne T
Medical Records
Niggli F
Oncology 2018 List
Only Child
Pacurari N
Palliative Care
Pediatric Oncology
Pediatric Palliative Care
Rost M
Support Care Cancer
Wangmo T
-
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1007/s11136-017-1692-4</a>
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Title
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Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review
Publisher
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Quality of Life Research
Date
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2018
Subject
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Cross-Sectional Studies; Young Adult; Child; Humans; Adult; Adolescent; Reproducibility of Results; Biomedical Research; Quality of Life/psychology; Psychometrics; Adverse event self-report; Pediatric oncology; Self Report; Self-report instruments; Medical Oncology/standards
Creator
An entity primarily responsible for making the resource
Pinheiro LC; McFatrich M; Lucas N; Walker JS; Withycombe JS; Hinds PS; Sung L; Tomlinson D; Freyer DR; Mack JW; Baker JN; Reeve BB
Description
An account of the resource
OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. METHODS: A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. RESULTS: There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies. CONCLUSIONS: This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.
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<a href="http://doi.org/%2010.1007/s11136-017-1692-4" target="_blank" rel="noreferrer noopener">10.1007/s11136-017-1692-4</a>
2018
Adolescent
Adult
Adverse event self-report
Baker JN
Biomedical Research
Child
Cross-sectional Studies
Freyer DR
Hinds PS
Humans
Lucas N
Mack JW
McFatrich M
Medical Oncology/standards
Oncology 2018 List
Pediatric Oncology
Pinheiro LC
Psychometrics
Quality of Life Research
Quality Of Life/psychology
Reeve BB
Reproducibility of Results
Self Report
Self-report instruments
Sung L
Tomlinson D
Walker JS
Withycombe JS
Young Adult
-
Dublin Core
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Title
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2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1177/1043454217748586" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1177/1043454217748586</a>
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Title
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Measuring the Effects of an Animal-Assisted Intervention for Pediatric Oncology Patients and Their Parents: A Multisite Randomized Controlled Trial
Publisher
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Journal of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Anxiety; Animals; pediatric oncology; parent; health-related quality of life; Only Child; stress; Animal Shells; animal-assisted intervention
Creator
An entity primarily responsible for making the resource
McCullough A; Ruehrdanz A; Jenkins MA; Gilmer MJ; Olson J; Pawar A; Holley L; Sierra-Rivera S; Linder DE; Pichette D; Grossman NJ; Hellman C; Guerin NA; O'Haire ME
Description
An account of the resource
OBJECTIVE: This multicenter, parallel-group, randomized trial examined the effects of an animal-assisted intervention on the stress, anxiety, and health-related quality of life for children diagnosed with cancer and their parents. METHOD: Newly diagnosed patients, aged 3 to 17 years (n = 106), were randomized to receive either standard care plus regular visits from a therapy dog (intervention group), or standard care only (control group). Data were collected at set points over 4 months of the child's treatment. Measures included the State-Trait Anxiety Inventory, Pediatric Quality of Life Inventory, Pediatric Inventory for Parents, and child blood pressure and heart rate. All instruments were completed by the child and/or his/her parent(s). RESULTS: Children in both groups experienced a significant reduction in state anxiety ( P < .001). Parents in the intervention group showed significantly decreased parenting stress ( P = .008), with no changes in stress among parents in the control group. However, no significant differences between groups over time on any measures were observed. CONCLUSIONS: Animal-assisted interventions may provide certain benefits for parents and families during the initial stages of pediatric cancer treatment.
Identifier
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<a href="http://doi.org/%2010.1177/1043454217748586" target="_blank" rel="noreferrer noopener">10.1177/1043454217748586</a>
2017
Animal Shells
animal-assisted intervention
Animals
anxiety
Gilmer MJ
Grossman NJ
Guerin NA
Health-related quality of life
Hellman C
Holley L
Jenkins MA
Journal Of Pediatric Oncology Nursing
Linder DE
McCullough A
O'Haire ME
Olson J
Oncology 2018 List
Only Child
Parent
Pawar A
Pediatric Oncology
Pichette D
Ruehrdanz A
Sierra-Rivera S
Stress
-
Dublin Core
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Title
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2018 Oncology List
Text
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Citation List Month
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.11.009" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.jpainsymman.2018.11.009</a>
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Title
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Attitudes, Beliefs, and Practices of Pediatric Palliative Care Physicians Regarding the Use of Methadone in Children with Advanced Cancer
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Pediatrics; Pain Management; Methadone; Pediatric Palliative Care; Pediatric Oncology
Creator
An entity primarily responsible for making the resource
Madden K; Liu D; Bruera E
Description
An account of the resource
CONTEXT: Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. OBJECTIVES: To better understand the attitudes, beliefs, and practices of pediatric palliative care physicians regarding the use of methadone in children with advanced cancer. METHODS: A survey was sent to The American Academy of Pediatrics Section of Hospice and Palliative Medicine LISTSERV(R). Information on demographics, dosing of methadone, and the use of electrocardiograms (ECGs) was collected. RESULTS: One-hundred and five respondents (91%) provide palliative care to children >/= 50% of the time, and a majority (81, 77%) prescribe methadone. Most (62, 77%) physicians were board-certified in Hospice and Palliative Medicine and most (39, 63%) certified via the direct pathway ("grandfathering"). Most physicians (57, 70%) do not use loading doses of methadone. Board-certified physicians trended towards decreasing methadone dose more (40% +/- 19%) than non-board-certified physicians (28%, +/-20%) when changing from the oral to intravenous route (p = 0.07). Respondents defined a QTc interval as "prolonged" (mean +/- SD) at 444 milliseconds (+/-68 milliseconds). The percentage of patients receiving a baseline ECG was 65% (+/-33%). The most common reason for not performing a baseline ECG was that the patient was on hospice (13, 36%). CONCLUSIONS: There are consistent practices, attitudes, and beliefs of pediatric palliative care providers with regards to methadone. More education is needed on the accurate value of a prolonged QTc interval.
Identifier
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<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.11.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.11.009</a>
2018
Bruera E
Journal of Pain and Symptom Management
Liu D
Madden K
Methadone
Oncology 2018 List
Pain Management
Pediatric Oncology
Pediatric Palliative Care
Pediatrics
-
Dublin Core
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Title
A name given to the resource
2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.01.021" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.jpainsymman.2018.01.021</a>
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Title
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Predictors of Late Palliative Care Referral in Children with Cancer
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Child; Hematologic Neoplasms; Referral and Consultation; Palliative Care; pediatric oncology; Palliative care; early integration; Only Child; consultation; palliative oncology; timing
Creator
An entity primarily responsible for making the resource
Kaye EC; Jerkins J; Gushue CA; DeMarsh S; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Description
An account of the resource
CONTEXT: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized, and variables that influence timing of PC integration for children with cancer remain unknown. OBJECTIVES: To investigate associations between demographic, disease, treatment, and end-of-life attributes and timing of PC consultation for children with high-risk cancer enrolled on a PC service. METHODS: A comprehensive standardized tool was used to abstract data from the medical records of 321 patients treated at a large academic pediatric cancer who died between 2011 and 2015. RESULTS: Gender, race, ethnicity, enrollment on a phase I protocol, number of high-acuity hospitalizations, and receipt of cardiopulmonary resuscitation were not associated with timing of PC involvement. Patients with hematologic malignancy, those who received cancer-directed therapy during the last month of life, and those with advance directives documented </=1 week prior to death had higher odds of late PC referral (malignancy: OR 3.24, p=0.001; therapy: OR 4.65, p<0.001; directive: OR 4.81, p<0.0001). Patients who received hospice services had lower odds of late PC referral <30 days prior to death (OR 0.31, p<0.001). CONCLUSIONS: Hematologic malignancy, cancer-directed therapy at the end of life, and delayed advance directives documentation are associated with late PC involvement in children who died with cancer. Identification of these variables affords opportunities to study targeted interventions to enhance access to earlier PC resources and services for children with high-risk cancer and their families.
Identifier
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<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.01.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.01.021</a>
2018
Baker JN
Blazin L
Child
Consultation
DeMarsh S
early integration
Gushue CA
Hematologic Neoplasms
Jerkins J
Johnson LM
Journal of Pain and Symptom Management
Kaye EC
Levine DR
Lu Z
Morrison RR
Oncology 2018 List
Only Child
Palliative Care
palliative oncology
Pediatric Oncology
Referral And Consultation
Snaman JM
Sykes A
timing
-
Dublin Core
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Title
A name given to the resource
2018 Oncology 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1186/s13104-018-3905-5" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1186/s13104-018-3905-5</a>
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Title
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Interprofessional palliative care education for pediatric oncology clinicians: an evidence-based practice review
Publisher
An entity responsible for making the resource available
BMC Res Notes
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Pediatric oncology; Interprofessional education; Palliative care; Evidence-based practice
Creator
An entity primarily responsible for making the resource
Green SB; Markaki A
Description
An account of the resource
OBJECTIVE: Clinician education and expertise in palliative care varies widely across pediatric oncology programs. The purpose of this evidence-based practice review was to identify interprofessional palliative care education models applicable to pediatric oncology settings as well as methods for evaluating their impact on clinical practice. RESULTS: Based on a literature search in PubMed, CINAHL and Embase, which identified 13 articles meeting inclusion/exclusion criteria, the following three themes emerged: (1) establishment of effective modalities and teaching strategies, (2) development of an interprofessional palliative care curriculum, and (3) program evaluation to assess impact on providers' self-perceived comfort in delivering palliative care and patient/family perceptions of care received. Remarkably, health professionals reported receiving limited palliative care training, with little evidence of systematic evaluation of practice changes following training completion. Improving palliative care delivery was linked to the development and integration of an interprofessional palliative care curriculum. Suggested evaluation strategies included: (1) eliciting patient and family feedback, (2) standardizing care delivery measures, and (3) evaluating outcomes of care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/%2010.1186/s13104-018-3905-5" target="_blank" rel="noreferrer noopener">10.1186/s13104-018-3905-5</a>
2018
BMC Res Notes
Evidence-based Practice
Green SB
Interprofessional education
Markaki A
Oncology 2018 List
Palliative Care
Pediatric Oncology
-
Dublin Core
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Title
A name given to the resource
October 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
September 2018 List
URL Address
<a href="http://doi.org/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1177/1049909118786875</a>
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Title
A name given to the resource
Incorporating Bereaved Parents as Faculty Facilitators and Educators in Teaching Principles of Palliative and End-of-Life Care.
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
2018
Subject
The topic of the resource
bereavement; communication training; end of life; palliative care education; pediatric oncology; pediatric palliative care
Creator
An entity primarily responsible for making the resource
Snaman JM; Kaye EC; Spraker-Perlman H; Levine D; Clark L; Wilcox R; Barnett B; Sykes April; Lu Z; Cunningham MJ; Baker JN
Description
An account of the resource
BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in uniquely powerful and valuable ways. The objective of this study is to present an innovative palliative care educational program facilitated by trained bereaved parents who serve as volunteer educators in local and national palliative care educational forums and to describe how incorporation of bereaved parents in these educational forums affects participant comfort with communication and management of children at the EOL. METHODS: Parent educators underwent both general and session-specific training and participated in debriefings following each session. Survey tools were developed or adapted to determine how bereaved parent educators affected participant experiences in 3 different educational forums. Pre- and postsession surveys with incorporation of retrospective preprogram assessment items to control for response shift were used in the evaluation of institutional seminars on pediatric palliative and EOL care and role-play-based communication training sessions. Results from feedback surveys sent to attendees were used to appraise the participants' experience at the international oncology symposium. RESULTS: Involvement of trained parent educators across diverse, interdisciplinary educational forums improved attendee comfort in communicating with, and caring for, patients and families with serious illness. Importantly, parent educators also derive benefit from involvement in educational sessions with interdisciplinary clinicians. CONCLUSIONS: Integration of bereaved parents into palliative and EOL care education is an innovative and effective model that benefits both interdisciplinary clinicians and bereaved parents.
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<a href="http://doi.org/10.1177/1049909118786875" target="_blank" rel="noreferrer noopener">10.1177/1049909118786875</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
Baker JN
Barnett B
Bereavement
Clark L
communication training
Cunningham MJ
End Of Life
Kaye EC
Levine D
Lu Z
Palliative Care Education
Pediatric Oncology
Pediatric Palliative Care
September 2018 List
Snaman JM
Spraker-Perlman H
Sykes April
The American Journal of Hospice & Palliative Care
Wilcox R
-
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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.
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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>
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Title
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End-of-life care of children with diffuse intrinsic pontine glioma
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Journal of Neuro-Oncology
Date
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2018
Subject
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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
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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.
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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
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<a href="http://doi.org/10.1016/j.soncn.2014.08.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.soncn.2014.08.003</a>
<a href="http://www.seminarsoncologynursing.com/article/S0749208114000631/abstract" target="_blank" rel="noreferrer">http://www.seminarsoncologynursing.com/article/S0749208114000631/abstract</a>
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Title
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Contributions of Palliative Care to Pediatric Patient Care
Publisher
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Seminars In Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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Pediatric oncology; Nursing; Pediatric palliative care
Creator
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Mandac C; Battista V
Description
An account of the resource
Objectives To provide an overview of pediatric palliative care (PPC) as it relates to children and families living with oncologic disease. Data Sources Journal articles, clinical research reports, clinical guidelines, and national statistics. Conclusion As new treatment protocols become available, the need for simultaneous supportive PPC, including adequate pain and symptom management, is evident. Further research and PPC program development is necessary for adherence to the current recommendation that PPC should be initiated at the time of diagnosis and continue throughout the course of a child's disease. Implications for Nursing Practice Palliative care nursing holds a specific role in the pediatric oncology setting. Registered nurses and advanced practice nurses should be adequately trained in PPC because they are in an optimal role to contribute to interdisciplinary PPC for pediatric oncology patients and their families.
2014-11
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<a href="http://doi.org/10.1016/j.soncn.2014.08.003" target="_blank" rel="noreferrer">10.1016/j.soncn.2014.08.003</a>
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Type
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Journal Article
2014
Backlog
Battista V
Journal Article
Mandac C
Nursing
Pediatric Oncology
Pediatric Palliative Care
Seminars In Oncology Nursing
-
Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.2147/COAYA.S29757" target="_blank" rel="noreferrer">http://doi.org/10.2147/COAYA.S29757</a>
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Title
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Palliative care for adolescents and young adults with cancer
Publisher
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Clinical Oncology In Adolescents And Young Adults
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
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quality of life; end of life; Disease Specific; Pediatric oncology; psychosocial needs; psychosocial oncology; psychosocial outcomes; Supportive care
Creator
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Rosenberg A; Wolfe J
Description
An account of the resource
Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.
2013
Identifier
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<a href="http://doi.org/10.2147/COAYA.S29757" target="_blank" rel="noreferrer">10.2147/COAYA.S29757</a>
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Type
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Journal Article
2013
Backlog
Clinical Oncology In Adolescents And Young Adults
Disease Specific
End Of Life
Journal Article
Pediatric Oncology
psychosocial needs
psychosocial oncology
psychosocial outcomes
Quality Of Life
Rosenberg A
Supportive Care
Wolfe 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/10.1002/pbc.24902" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24902</a>
<a href="http://onlinelibrary.wiley.com/doi/10.1002/pbc.24902/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1002/pbc.24902/abstract</a>
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Title
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Successful use of indwelling tunneled catheters for the management of effusions in children with advanced cancer
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
2013
Subject
The topic of the resource
Pediatric oncology; ascites; catheters; indwelling; malignant; pleural effusion
Creator
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den Hollander BS; Connolly BL; Sung L; Rapoport A; Zwaan Cm; Grant RM; Parra D; Temple MJ
Description
An account of the resource
Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for management of MPE/MA in children with advanced cancer. Methods Children with MPE/MA who underwent ITC insertion (2007–2012) were retrospectively reviewed. Clinical, procedural, complication and outcome details were analyzed. Results PleurX® ITCs (n = 12) were inserted in eight patients (5–18 years) with sarcoma (11 MPE, 1 MA), achieving symptom relief and facilitating discharge home post ITC (median 2 days). Median survival following ITC was 51 days. There were two major complications: pain (n = 1), late site infection (n = 1), and five minor complications. Drainage ceased in four patients (pleurodesis/tumor progression). At time of death, six ITCs (five patients) were still in situ. Conclusions ITC appears to be a safe, effective treatment for MPE/MA in advanced pediatric cancer, achieving symptomatic relief and discharge home. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Identifier
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<a href="http://doi.org/10.1002/pbc.24902" target="_blank" rel="noreferrer">10.1002/pbc.24902</a>
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Type
The nature or genre of the resource
Journal Article
2013
ascites
Backlog
catheters
Connolly BL
den Hollander BS
Grant RM
indwelling
Journal Article
malignant
Parra D
Pediatric Blood & Cancer
Pediatric Oncology
pleural effusion
Rapoport A
Sung L
Temple MJ
Zwaan Cm
-
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.24907" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.24907</a>
<a href="http://onlinelibrary.wiley.com/doi/10.1002/pbc.24907/abstract" target="_blank" rel="noreferrer">http://onlinelibrary.wiley.com/doi/10.1002/pbc.24907/abstract</a>
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Title
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Pain management at home in children with cancer: A daily diary study
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
2013
Subject
The topic of the resource
Pain; Pain Management; Pediatric oncology; daily diary; pain at home
Creator
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Fortier MA; Wahi A; Bruce C; Maurer EL; Stevenson R
Description
An account of the resource
Background With the transition of care of cancer patients from the hospital to the home setting, parents are largely responsible for children's pain management. Children's cancer pain is undermanaged, yet, there is little empirical data on the occurrence and management of cancer pain in the home setting. The purpose of the present study, therefore, was to employ a daily diary protocol to examine barriers to pain management of children's cancer pain by parents at home. Procedure Parent–child dyads were recruited from the Cancer Institute at a major children's hospital in Southern California. A total of 45 patient/parent pairs completed baseline data on demographic and personality characteristics, children's quality of life, and parental beliefs regarding analgesic use for children and then completed daily diaries of pain and analgesic administration for 14 consecutive days. Results Most children were reported to experience chronic pain while undergoing treatment for cancer, yet overall analgesic administration at home was low. Parents who reported misconceptions regarding analgesic use for children were less likely to administer pain medication to children. Children who were less shy, more social, or had lower quality of life were more likely to receive analgesics. Conclusions A significant proportion of children receiving outpatient treatment for cancer were rated as experiencing chronic pain and pain was not optimally managed in the home setting. Further understanding and addressing barriers to children's cancer pain management in the home setting will aid in alleviating unnecessary pain in this vulnerable patient population. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
Identifier
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<a href="http://doi.org/10.1002/pbc.24907" target="_blank" rel="noreferrer">10.1002/pbc.24907</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
2013
Backlog
Bruce C
daily diary
Fortier MA
Journal Article
Maurer EL
Pain
pain at home
Pain Management
Pediatric Blood & Cancer
Pediatric Oncology
Stevenson R
Wahi A
-
Dublin Core
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Title
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March 2018 List
Text
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Citation List Month
March 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.26957" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.26957</a>
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High-risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out
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
2018
Subject
The topic of the resource
end-of-life care; handoff; hospice; Palliative Care; pediatric oncology; sign out
Creator
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Brock KE; Mullaney E
Identifier
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<a href="http://doi.org/10.1002/pbc.26957" target="_blank" rel="noreferrer">10.1002/pbc.26957</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).
Description
An account of the resource
2018-01
2018
Brock KE
End-of-life Care
handoff
Hospice
March 2018 List
Mullaney E
Palliative Care
Pediatric Blood & Cancer
Pediatric Oncology
sign out
-
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.30087" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.30087</a>
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Title
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Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
bereavement; Palliative Care; Communication; end of life; Grief; Pediatric oncology; bereaved parent; bereavement program; cancer; health care provider
Creator
An entity primarily responsible for making the resource
Snaman JM; Kaye EC; Torres C; Gibson DV; Baker JN
Description
An account of the resource
BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death. METHODS: Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques. RESULTS: Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents. CONCLUSIONS: Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society.
2016-05
Identifier
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<a href="http://doi.org/10.1002/cncr.30087" target="_blank" rel="noreferrer">10.1002/cncr.30087</a>
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Type
The nature or genre of the resource
Journal Article
2016
Backlog
Baker JN
Bereaved Parent
Bereavement
Bereavement Program
Cancer
Communication
End Of Life
Gibson DV
Grief
Health Care Provider
Journal Article
Kaye EC
Palliative Care
Pediatric Oncology
Snaman JM
Torres C
-
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/s11060-016-2141-x" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11060-016-2141-x</a>
Dublin Core
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Title
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State of affairs in use of steroids in diffuse intrinsic pontine glioma: an international survey and a review of the literature
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
2016
Subject
The topic of the resource
Pediatric oncology; Diffuse Intrinsic Pontine Glioma (DIPG); Quality of life (QoL); Side effects; Steroids
Creator
An entity primarily responsible for making the resource
Veldhuijzen van Zanten Sophie EM; Cruz O; Kaspers Gertjan JL; Hargrave DR; van Vuurden DG; SIOPEDIPG Network
Description
An account of the resource
Children diagnosed with diffuse intrinsic pontine glioma (DIPG) face a dismal prognosis, with severe neurologic deterioration and inevitable death at a median of 9 months from diagnosis. Steroids are widely prescribed as supportive or palliative treatment although they are known to cause severe side effects that may reduce the quality of life. This study aims to review the current knowledge on, and use of, steroids in DIPG patients. A global questionnaire-study among health care professionals was performed to ascertain information on the current (multi-)institutional and (multi-)national use of steroids, the availability of clinical guidelines, and the need for improvements in prescribing steroids to DIPG patients. In addition, an extensive literature search was performed to review studies investigating steroids in pediatric brain tumor patients. From 150 responding health care professionals, only 7 % had clinical guidelines. The use of steroids was heterogeneous and over 85 % of respondents reported serious side effects. Fourteen articles, with low level of evidence, described the use of steroids in pediatric brain tumor patients. Clinical trials investigating optimal dose or regimen were lacking. This study is a first inventory of the availability of evidence-based information and clinical guidelines, and the current attitude towards the use of steroids in DIPG patients. To date, the risk-benefit ratio of steroids in this disease is yet to be determined. We emphasize the need for clinical trials resulting in guidelines on steroids, and possibly alternative drugs, to optimize the quality of care and quality of life of DIPG patients.
2016-07
Identifier
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<a href="http://doi.org/10.1007/s11060-016-2141-x" target="_blank" rel="noreferrer">10.1007/s11060-016-2141-x</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
2016
Backlog
Cruz O
Diffuse Intrinsic Pontine Glioma (DIPG)
Hargrave DR
Journal Article
Journal of Neuro-Oncology
Kaspers Gertjan JL
Pediatric Oncology
Quality of life (QoL)
Side effects
SIOPEDIPG Network
Steroids
van Vuurden DG
Veldhuijzen van Zanten Sophie EM
-
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.29354" target="_blank" rel="noreferrer">http://doi.org/10.1002/cncr.29354</a>
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Title
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Practical communication guidance to improve phase 1 informed consent conversations and decision-making in pediatric oncology
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
2015
Subject
The topic of the resource
Ethics; patient perspectives; Pediatric oncology; physician communication
Creator
An entity primarily responsible for making the resource
Johnson LM; Leek AC; Drotar D; Noll RB; Rheingold SR; Kodish ED; Baker JN
Description
An account of the resource
BACKGROUND: It can be difficult to explain pediatric phase 1 oncology trials to families of children with refractory cancer. Parents may misunderstand the information presented to them, and physicians may assume that certain topics are covered in the informed consent document and need not be discussed. Communication models can help to ensure effective discussions. METHODS: Suggestions for improving the informed consent process were first solicited from phase 1 study clinicians via questionnaire. Eight parents who had enrolled their child on a phase 1 pediatric oncology trial were recruited for an advisory group designed to assess the clinicians' suggestions and make additional recommendations for improving informed consent for pediatric phase 1 trials. RESULTS: A phase 1 communication model was designed to incorporate the suggestions of clinicians and families. It focused on educating parents/families about phase 1 trials at specific time points during a child's illness, but specifically at the point of disease recurrence. An informative phase 1 fact sheet that can be distributed to families was also presented. CONCLUSIONS: Families who will be offered information regarding phase 1 clinical trials can first receive a standardized fact sheet explaining the general purpose of these early-phase clinical trials. Parental understanding may be enhanced further when oncologists address key themes, beginning at the time of diagnosis and continuing through important decision points during the child's illness. This model should be prospectively evaluated. Cancer 2015. © 2015 American Cancer Society.
2015-04
Identifier
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<a href="http://doi.org/10.1002/cncr.29354" target="_blank" rel="noreferrer">10.1002/cncr.29354</a>
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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
2015
Backlog
Baker JN
Cancer
Drotar D
Ethics
Johnson LM
Journal Article
Kodish ED
Leek AC
Noll RB
patient perspectives
Pediatric Oncology
physician communication
Rheingold SR
-
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/10.1177/0193945906295533" target="_blank" rel="noreferrer">http://doi.org/10.1177/0193945906295533</a>
<a href="http://wjn.sagepub.com.ezproxy.library.ubc.ca/content/29/4/448" target="_blank" rel="noreferrer">http://wjn.sagepub.com.ezproxy.library.ubc.ca/content/29/4/448</a>
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Title
A name given to the resource
Conducting End-of-Life Studies in Pediatric Oncology
Publisher
An entity responsible for making the resource available
Western Journal Of Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Humans; Terminal Care; Pediatrics; Pediatric Nursing; Longitudinal Studies; Reproducibility of Results; Oncology at EOL; Pediatric oncology; Clinical Nursing Research; dying children and adolescents; end-of-life research; Oncologic Nursing/ethics
Creator
An entity primarily responsible for making the resource
Hinds PS; Burghen E; Pritchard M
Description
An account of the resource
Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.
2007-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0193945906295533" target="_blank" rel="noreferrer">10.1177/0193945906295533</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
Backlog
Burghen E
Clinical Nursing Research
dying children and adolescents
end-of-life research
Hinds PS
Humans
Journal Article
Longitudinal Studies
Oncologic Nursing/ethics
Oncology at EOL
Pediatric Nursing
Pediatric Oncology
Pediatrics
Pritchard M
Reproducibility of Results
Terminal Care
Western Journal of Nursing Research
-
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.2004.12.014" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.soncn.2004.12.014</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
Consensus statement: collaborative clinical research on end-of-life care in pediatric oncology
Publisher
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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
Clinical Research; Collaboration; Collaborative; Pediatric oncology
Creator
An entity primarily responsible for making the resource
Stutzer CA; Drew D; Himelstein BP; Hinds PS; LaFond DA; Nuss SL; Rushton CH
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.soncn.2004.12.014" target="_blank" rel="noreferrer">10.1016/j.soncn.2004.12.014</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
Backlog
Clinical Research
Collaboration
Collaborative
Drew D
Himelstein BP
Hinds PS
Journal Article
Lafond DA
Nuss SL
Pediatric Oncology
Rushton CH
Seminars In Oncology Nursing
Stutzer CA
-
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
Oncology
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1002/pbc.26826" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.26826</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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Medical marijuana in pediatric oncology: A review of the evidence and implications for practice
Publisher
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Pediatric Blood And Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Medical Marijuana; Pediatric Oncology; Supportive Care
Creator
An entity primarily responsible for making the resource
Ananth P; Reed-Weston A; Wolfe J
Description
An account of the resource
Medical marijuana (MM) has become increasingly legal at the state level and accessible to children with serious illness. Pediatric patients with cancer may be particularly receptive to MM, given purported benefits in managing cancer-related symptoms. In this review, we examine the evidence for MM as a supportive care agent in pediatric oncology. We describe the current legal status of MM, mechanism of action, common formulations, and potential benefits versus risks for pediatric oncology patients. We offer suggestions for how providers might approach MM requests. Throughout, we comment on avenues for future investigation on this growing trend in supportive care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.26826" target="_blank" rel="noreferrer">10.1002/pbc.26826</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).
2017
Ananth P
Medical Marijuana
Oncology 2017 List
Pediatric Blood and Cancer
Pediatric Oncology
Reed-Weston A
Supportive Care
Wolfe J
-
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
Oncology
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2017.06.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.06.013</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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Communication Challenges of Oncologists and Intensivists Caring for Pediatric Oncology Patients: A Qualitative Study
Publisher
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Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Communication Barriers; Goals Of Care; Interprofessional Communication; Pediatric Ethics; Pediatric Intensive Care; Pediatric Oncology
Creator
An entity primarily responsible for making the resource
Odeniyi F; Nathanson PG; Schall TE; Walter JK
Description
An account of the resource
CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: To describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). METHODS: We conducted semi-structured interviews with a convenience sample of ten physicians, including pediatric oncology and intensive care attendings and fellows. RESULTS: We identified key themes (3 barriers, 4 facilitators) to having GCDs with families of oncology patients who have received intensive care. Barriers included challenges to communication within teams because of hierarchy and between teams due to incomplete sharing of information and confusion about who should initiate GCDs; provider experiences of internal conflict about how to engage parents in decision making and about the "right thing to do" for patients; and lack of education and training in communication. Facilitators included team preparation for family meetings; skills for partnering with families; the presence of palliative care specialists; and informal education in communication and willingness for further training in communication. Notably, the education theme was identified as both a barrier and a resource. CONCLUSION: We identified barriers to communication with families both within and between teams and for individual physicians. Formal communication training and processes that standardize communication to ensure completeness and role delineation between clinical teams may improve oncologists' and intensivists' ability to initiate GCDs, thereby fulfilling their ethical obligations of decision support.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2017.06.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.06.013</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).
2017
Communication Barriers
Goals Of Care
Interprofessional Communication
Journal of Pain and Symptom Management
Nathanson PG
Odeniyi F
Oncology 2017 List
Pediatric Ethics
Pediatric Intensive Care
Pediatric Oncology
Schall TE
Walter JK
-
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
November 2017 List
URL Address
<a href="https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">https://link.springer.com/chapter/10.1007/978-3-319-33679-4_31</a>
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
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 Care
Publisher
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Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Neoplasm; Palliative Therapy; 73-78-9 (lidocaine); 76-99-3 (methadone); 103-90-2 (paracetamol); 125-56-4 (methadone); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 8002-76-4 (opiate); 8008-60-4 (opiate); 12794-10-4 (benzodiazepine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 53663-61-9 (opiate); 56934-02-2 (lidocaine); 60142-96-3 (gabapentin); Acute Stress Disorder; Alcohol Consumption; Anticonvulsive Agent; Appetite; Benzodiazepine; Corticosteroid; Distress Syndrome; Dyspnea; Fentanyl; Gabapentin; Hair Loss; Health Care Personnel; Health Care System; Hospital; Human; Intensive Care Unit; Lidocaine; Major Depression; Medical Staff; Methadone; Mortality; Nausea And Vomiting; Obesity; Opiate; Paracetamol; Paralysis; Patient Care Planning; Priority Journal; Prostaglandin/ec [endogenous Compound]; Quality Of Life; Tracheostomy
Creator
An entity primarily responsible for making the resource
Wasilewski-Masker K; Howk T; Connelly E; Postovsky S; Brill P; Wrammert KC; Pillai R
Description
An account of the resource
Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev 33(7):616-621, 2007). Although the general philosophies of palliative care apply to AYAs, developmental considerations are unique to this group (Ferrari et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4850-4857, 2010); Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The interaction of psychosocial, emotional, physical, and existential issues is essential to consider (Wein et al. J Clin Oncol Off J Am Soc Clin Oncol 28(32):4819-4824, 2010). The gaps in care experienced on both sides of the healthcare system between pediatric and adult medicine can be particularly impactful when delivering palliative care. The benefit of a multidisciplinary palliative care approach is widely appreciated as is the need to begin the process early in order to develop a trusting relationship (Wiener et al. Pediatr Blood Cancer 60(5):715-718, 2013; Baker et al. Pediatr Clin N Am 55(1):223-250, 2008; Ferris et al. J Clin Oncol Off J Am Soc Clin Oncol 27(18):3052-3058). Honest communication which supports autonomy is essential in discussions of their goals, worries, risks versus benefits of treatment, and advanced care planning (Clark and Fasciano Am J Hosp Palliat Care 32(1):101-111, 2015; Christenson et al. J Pediatr Health Care Off Publ Natl Assoc Pediatr Nurse Assoc Pract 24(5):286-291, 2010; Linebarger et al. Pediatr Clin N Am 61(4):785-796, 2014).
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1007/978-3-319-33679-4_31" target="_blank" rel="noreferrer">10.1007/978-3-319-33679-4_31</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).
103-90-2 (paracetamol)
1095-90-5 (methadone)
125-56-4 (methadone)
12794-10-4 (benzodiazepine)
137-58-6 (lidocaine)
2017
23142-53-2 (methadone)
24847-67-4 (lidocaine)
297-88-1 (methadone)
437-38-7 (fentanyl)
53663-61-9 (opiate)
56934-02-2 (lidocaine)
60142-96-3 (gabapentin)
73-78-9 (lidocaine)
76-99-3 (methadone)
8002-76-4 (opiate)
8008-60-4 (opiate)
Acute Stress Disorder
Alcohol Consumption
Anticonvulsive Agent
Appetite
Benzodiazepine
Brill P
Connelly E
Corticosteroid
Distress Syndrome
Dyspnea
Fentanyl
Gabapentin
Hair Loss
Health Care Personnel
Health Care System
Hospital
Howk T
Human
Intensive Care Unit
Lidocaine
Major Depression
Medical Staff
Methadone
Mortality
Nausea And Vomiting
Neoplasm
November 2017 List
Obesity
Opiate
Palliative Therapy
Paracetamol
Paralysis
Patient Care Planning
Pediatric Oncology
Pillai R
Postovsky S
Priority Journal
Prostaglandin/ec [endogenous Compound]
Quality Of Life
Tracheostomy
Wasilewski-Masker K
Wrammert KC
-
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
November 2017 List
URL Address
http://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D=emex&AN=618183528
Notes
<p>Using Smart Source Parsing<br />(pp Date of Publication: 2017</p>
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
Late Effects of Treatment and Palliative Care
Publisher
An entity responsible for making the resource available
Pediatric Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Central Nervous System Tumor; Palliative Therapy; 59-05-2 (methotrexate); 69-74-9 (cytarabine); 147-94-4 (cytarabine); 154-93-8 (carmustine); 7413-34-5 (methotrexate); 15475-56-6 (methotrexate); 15663-27-1 (cisplatin); 26035-31-4 (cisplatin); 96081-74-2 (cisplatin); Advance Care Planning; Appetite Disorder; Bone Density; Brain Tumor; Carmustine; Childhood Cancer Survivor; Cisplatin; Constipation; Corticosteroid; Cytarabine; Diarrhea; Dyspnea; Endocrine Disease; Fatigue; Genetic Polymorphism; Health Care Quality; Human; Incidence; Medical Decision Making; Medulloblastoma; Methotrexate; Morbidity; Mortality Rate; Nausea And Vomiting; Neuroectoderm Tumor; Neuropathic Pain; Neuropsychological Test; Pain Assessment; Patient Care; Phase 1 Clinical Trial (topic); Priority Journal; Psychosocial Disorder; Quality Of Life; Questionnaire; Radiation Injury; Respiration Depression; Seizure; Signal Transduction; Spasticity
Creator
An entity primarily responsible for making the resource
Chang E; Goldsby R; Mueller S; Banerjee A
Description
An account of the resource
Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high morbidity rates related to the late effects of treatment. While intensified therapy has improved average 5-year survival in patients with pediatric brain tumors to 73 % (Ostrom et al. 2014) from less than 60 % in 1975-1979 (Linabery and Ross 2008), it has also increased the long-term consequences. Survivors may develop a spectrum of late effects ranging from subtle memory loss and cosmetic anomalies to severe neurological disabilities and recurrent neoplasms. While seemingly quite different, both palliative and late-effects care focus on improving quality of life for patients and need to be integrated into the overall care plan.
Identifier
An unambiguous reference to the resource within a given context
10.1007/978-3-319-30789-3_17
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).
147-94-4 (cytarabine)
154-93-8 (carmustine)
15475-56-6 (methotrexate)
15663-27-1 (cisplatin)
2017
26035-31-4 (cisplatin)
59-05-2 (methotrexate)
69-74-9 (cytarabine)
7413-34-5 (methotrexate)
96081-74-2 (cisplatin)
Advance Care Planning
Appetite Disorder
Banerjee A
Bone Density
Brain Tumor
Carmustine
Central Nervous System Tumor
Chang E
Childhood Cancer Survivor
Cisplatin
Constipation
Corticosteroid
Cytarabine
Diarrhea
Dyspnea
Endocrine Disease
Fatigue
Genetic Polymorphism
Goldsby R
Health Care Quality
Human
Incidence
Medical Decision Making
Medulloblastoma
Methotrexate
Morbidity
Mortality Rate
Mueller S
Nausea And Vomiting
Neuroectoderm Tumor
Neuropathic Pain
Neuropsychological Test
November 2017 List
Pain Assessment
Palliative Therapy
Patient Care
Pediatric Oncology
Phase 1 Clinical Trial (topic)
Priority Journal
Psychosocial Disorder
Quality Of Life
Questionnaire
Radiation Injury
Respiration Depression
Seizure
Signal Transduction
Spasticity
-
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
May 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
Helping Parents Live With The Hole In Their Heart: The Role Of Health Care Providers And Institutions In The Bereaved Parents’ Grief Journeys.
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
2016
Subject
The topic of the resource
Death; Analysis; Child; Parents; Parent And Child; Bereavement; Psychological Aspects
Bereaved Parent; Bereavement; Bereavement Program; Cancer; Communication; End Of Life; Grief; Health Care Provider; Palliative Care; Pediatric Oncology
Creator
An entity primarily responsible for making the resource
Snaman J; Kaye EC; Torres C; Gibson DV; Baker J
Description
An account of the resource
BACKGROUND:
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death.
METHODS:
Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques.
RESULTS:
Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents.
CONCLUSIONS:
Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution.
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).
2016
Analysis
Baker J
Bereaved Parent
Bereavement
Bereavement Program
Cancer
Child
Communication
Death
End Of Life
Gibson DV
Grief
Health Care Provider
Kaye EC
May 2016 List
Palliative Care
Parent And Child
Parents
Pediatric Oncology
Psychological Aspects
Snaman J
Torres C