1
40
350
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221135350</a>
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Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences
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Palliative Medicine
Date
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2023
Subject
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Collaboration; Child; Female; Male; Palliative Care; Denmark; Adolescence; Content Analysis; Qualitative Studies; Home Health Care; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Pediatric Care; Semi-Structured Interview; In Infancy and Childhood; Cancer Patients; Case Studies; Oncologic Care
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Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M
Description
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Background: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. Aim: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. Design: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. Setting/participants: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. Results: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." Conclusions: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.
Identifier
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<a href="http://doi.org/10.1177/02692163221135350" target="_blank" rel="noreferrer noopener">10.1177/02692163221135350</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).
2023
2023 SE3 - Oncology
Abitz M
Adolescence
Bidstrup PE
cancer patients
Case Studies
Child
Collaboration
Content Analysis
Data Analysis Software
Denmark
Descriptive Research
Descriptive Statistics
Female
Hammer NM
Hansson H
Home Health Care
Human
In Infancy and Childhood
Larsen HB
Male
Olsen M
Oncologic Care
Palliative Care
Palliative Medicine
Pedersen LH
Pediatric Care
Qualitative Studies
Schmiegelow K
Semi-Structured Interview
Sjøgren P
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30115" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30115</a>
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Title
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The impact of clinical trial enrollment on specialty palliative care utilization in pediatric patients with high-grade gliomas
Publisher
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Pediatric Blood and Cancer
Date
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2023
Subject
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Humans; Child; palliative care; Palliative Care; Disease Progression; Palliative Care; Clinical Trials as Topic; clinical trial; Glioma; Glioma/therapy/pathology; high-grade glioma; pediatric brain tumor
Creator
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Roberts HJ; Wang Y; Spruit JL; Taylor L; Franson AT
Description
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BACKGROUND: Palliative care (PC) provides numerous benefits for children with cancer. Pediatric patients with high-grade glioma (HGG) are particularly well suited for early PC involvement given their high symptom burden and poor prognosis. However, studies continue to reveal that children with cancer, including HGG, have delayed PC involvement. We hypothesized that clinical trial enrollment may lead to a lack of or delay in PC involvement in this population. PROCEDURE: For each patient in our cohort of 43 pediatric patients with HGG, demographic, diagnostic, therapeutic, clinical trial enrollment, and PC information were collected. Statistical analysis was performed comparing PC characteristics between patients who did and did not enroll in a clinical trial. RESULTS: Seventy-two percent of patients had at least one visit with a PC provider. Fifty-six percent of patients enrolled in a clinical trial with HGG-directed therapy. Seventy-one percent of patients who enrolled in a clinical trial received specialty PC compared to 74% of non-trial participants (p = 1.000). Patients who enrolled in clinical trials received PC earlier in their disease course measured in days before death (mean = 177 days) compared to those who did not enroll (mean = 113 days, p = .180), though not statistically significant. CONCLUSIONS: The prevalence of clinical trial enrollment is high in patients with HGG and will likely increase as the genomic/epigenomic landscape of these tumors is better understood. As such, our data reassuringly suggest that trial participation does not interfere with the receipt of specialty PC in this population.
Identifier
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<a href="http://doi.org/10.1002/pbc.30115" target="_blank" rel="noreferrer noopener">10.1002/pbc.30115</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).
2023
2023 SE3 - Oncology
Child
Clinical Trial
Clinical Trials as Topic
Disease Progression
Franson AT
Glioma
Glioma/therapy/pathology
high-grade glioma
Humans
Palliative Care
Pediatric Blood and Cancer
Pediatric Brain Tumor
Roberts HJ
Spruit JL
Taylor L
Wang Y
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30081</a>
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Differences in palliative opportunities across diagnosis groups in children with cancer.
Publisher
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Pediatric Blood and Cancer
Date
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2023
Subject
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Humans; Infant Newborn; Child; Child Preschool; Palliative Care; Retrospective Studies; Adolescent; Infant; Quality of Life; Recurrence; Only Child; Terminal Care/psychology; Neoplasms/therapy; Leukemia; Clinical Trials Phase I as Topic; Lymphoma
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Ebelhar J; DeGroote NP; Massie AM; Labudde E; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Description
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BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.
Identifier
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<a href="http://doi.org/10.1002/pbc.30081" target="_blank" rel="noreferrer noopener">10.1002/pbc.30081</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).
2023
2023 SE3 - Oncology
Adolescent
Allen KE
Brock KE
Castellino SM
Child
Child Preschool
Clinical Trials Phase I as Topic
DeGroote NP
Ebelhar J
Humans
Infant
Infant Newborn
Labudde E
Leukemia
Lymphoma
Massie AM
Neoplasms/therapy
Only Child
Palliative Care
Pediatric Blood and Cancer
Quality Of Life
Recurrence
Retrospective Studies
Terminal Care/psychology
Wasilewski-Masker K
-
Dublin Core
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.144</a>
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“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
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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
2023
Subject
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Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Creator
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Feifer D; Broden E; Baker JN; Wolfe J; Snaman J
Description
An account of the resource
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</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).
2023
2023 SE3 - Oncology
Baker JN
Bereavement
Broden E
Child
Decisional regret
Feifer D
Journal of Pain and Symptom Management
Parent
Parents
Pediatric Cancer
Snaman J
Wolfe J
-
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</a>
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Title
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Is an Exercise Program for Pediatric Cancer Patients in Palliative Care Feasible and Supportive?-A Case Series
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care
Creator
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Beller R; Gauß G; Reinhardt D; Götte M
Description
An account of the resource
(1) Background: Growing evidence indicates benefits through exercise programs in pediatric oncology throughout the whole cancer trajectory. This should include palliative care, too. This project analyzes the feasibility of a supervised exercise program offered during hospital and home-based care for children with advanced cancer diagnoses. (2) Methods: Four children (7-13 years old) with advanced cancer diagnoses participated in this project. It consisted of supervised exercise sessions offered once a week (30-90 min), mainly home-based, but also on an in- and outpatient basis. Regular data assessments included psychological and physical capacity-related endpoints and body composition. Details and contents of exercise sessions and adverse events were recorded. (3) Results: Exercise was feasible with 73 ± 9% adherence to the minimum number of planned sessions. The exercise offer was accepted until shortly before death. Effects on fatigue, quality of life and muscular endurance were noted. Participants showed major deviations from age-specific reference values. No exercise-related adverse events occurred. (4) Conclusions: The exercise program was safe, feasible, and might have served as a supportive tool to reduce overall burden. Evaluation of exercise as usual palliative care should be assessed by further studies.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></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).
2023
2023 SE3 - Oncology
Beller R
Children
Gauß G
Götte M
Palliative Care
Reinhardt D
-
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.ejon.2022.102260" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.ejon.2022.102260</a>
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Nursing care and nurses' understandings of grief and bereavement among patients and families during cancer illness and death – A scoping review
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European Journal of Oncology Nursing
Date
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2023
Subject
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Bereavement; Nursing Care
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Madsen R; Larsen P; Fiala CAM; Marcussen J
Description
An account of the resource
Grief and bereavement is often present among patients and families during courses of cancer. Offering support for both patients and families is essential in the context of cancer nursing. Present scoping review offers an overview of existing knowledge, which can be used for inspiration in cancer-nursing. Hence, the objective of this study was to identify understandings of grief and bereavement, which is present in a cancer-nursing context and to develop insight on existing knowledge about nursing interventions targeted patients and their families' experiences of grief and bereavement due to cancer illness. The scoping review is conducted, inspired by the methodology of Joanna Briggs Institute. Sources of evidence are retrieved from a large number of databases and resources. Twenty-two studies are included in the scoping review. The studies are retrieved from eight different countries. Findings are mapped in nine categories. Eight categories related to nursing care targeted patients and/or families experiencing grief and/or bereavement; One category related to understandings of grief and/or bereavement targeted patients and families. Nursing interventions to support patients and their families during grief and bereavement covers a broad spectrum of interventions. E.g. communication; using artwork; cultural and spiritual care; bereavement care; supporting coping strategies. Different models and theoretical understandings were identified. E.g. The dual process model of coping with bereavement; A Divorced Family-focused Care Model; Family Strengths-Oriented Therapeutic Conversation (Fam-SOTC); and understandings of children's grieving process. • Complexity is present when caring for patients and families experiencing grief and bereavement during cancer illness. • This study identified multiple nurse interventions targeted patients and families experiencing grief and bereavement during cancer illness. • Present scoping review identified theoretical understandings of grief and bereavement in the context of cancer nursing.
Identifier
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<a href="http://doi.org/10.1016/j.ejon.2022.102260" target="_blank" rel="noreferrer noopener">10.1016/j.ejon.2022.102260</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).
2023
2023 SE3 - Oncology
Bereavement
European Journal Of Oncology Nursing
Fiala CAM
Larsen P
Madsen R
Marcussen J
Nursing Care
-
Dublin Core
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1200/OP.22.00538" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/OP.22.00538</a>
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Title
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Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning
Publisher
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JCO Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Bereavement; Only Child
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Snaman JM; Mazzola E; Helton G; Feifer D; Morris SE; Clark L; Baker JN; Wolfe J
Description
An account of the resource
PURPOSE:The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offsetting poor mental and physical outcomes.METHODS:Parents of children from two centers who died of cancer 6 to 24 months before were mailed a survey that included validated tools and additional Likert scale-based questions. We used correlation and univariate and multiple regression analyses to assess the associations between psychosocial and grief outcomes and parental social functioning.RESULTS:One hundred twenty-five parents representing 88 children completed the survey. Most respondents identified as female (63%), White (84%), and non-Hispanic (91%). The mean time since child's death was 14.7 (range, 8-26) months. Bereaved parents' mean score for social functioning was only slightly below normative values, and most parents indicated post-traumatic growth and adaptive coping. Parents had high symptom levels for depression, anxiety, post-traumatic stress, and prolonged grief, with those identifying as female having significantly higher symptom scores. Using multivariate analysis, parental scores for resilience and continuing bonds were associated with higher social functioning scores and parental scores for depressive symptoms and prolonged grief were associated with lower social functioning scores.CONCLUSION:Although bereaved parents exhibit resilience and positive coping, they also show high levels of psychosocial distress in the first 2 years after their child's death, which may reflect the typical parental bereavement experience. Screening for low parental social functioning may identify parents who would benefit from additional support early in bereavement.
Identifier
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<a href="http://doi.org/10.1200/OP.22.00538" target="_blank" rel="noreferrer noopener">10.1200/OP.22.00538</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).
2023
2023 SE3 - Oncology
Baker JN
Bereavement
Child
Clark L
Feifer D
Helton G
JCO Oncology Practice
Mazzola E
Morris SE
Only Child
Snaman JM
Wolfe J
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/S1478951522001018</a>
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Title
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Factors associated with mental health service use among families bereaved by pediatric cancer
Publisher
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Palliative and Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; Bereavement; article; controlled study; female; human; major clinical study; male; palliative therapy; education; sibling; Mental Health Services; bereavement; cooperation; distress syndrome; randomized controlled trial; health care personnel; self report; multicenter study; race; mother; home visit; malignant neoplasm; demography; father; support group; self help; educational status; mental health service; Child Behavior Checklist
Creator
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Hill KN; Olsavsky A; Barrera M; Gilmer MJ; Fairclough DL; Akard TF; Compas BE; Vannatta K; Gerhardt CA
Description
An account of the resource
OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHOD(S): Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULT(S): Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.
Identifier
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<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener">10.1017/S1478951522001018</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).
2022
2023 SE3 - Oncology
Akard TF
Article
Barrera M
Bereavement
Child
Child Behavior Checklist
Compas BE
Controlled Study
Cooperation
Demography
Distress Syndrome
Education
Educational Status
Fairclough DL
Father
Female
Gerhardt CA
Gilmer MJ
Health Care Personnel
Hill KN
Home Visit
Human
Major Clinical Study
Male
Malignant Neoplasm
mental health service
Mental Health Services
Mother
Multicenter Study
Olsavsky A
Palliative And Supportive Care
Palliative Therapy
race
Randomized Controlled Trial
self help
Self Report
Sibling
support group
Vannatta K
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/27527530221140069" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/27527530221140069</a>
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Title
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Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer
Publisher
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Journal of Pediatric Hematology/Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
palliative care; Palliative Care; Recurrence; Referral and Consultation; end-of-life; pediatric oncology
Creator
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Root MC; Koo J; Collins G; Penumarthy NL; Hermiston M; Bogetz JF
Description
An account of the resource
Background: Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for their child's end-of-life (EOL). Oncology clinicians cite barriers to pediatric palliative care (PPC) consultation, including concerns that PPC teams will upset families with EOL discussions. This study evaluated topics addressed by PPC teams over the course of their relationship with children who died from cancer. Methods: Retrospective chart review of children who were diagnosed with relapsed/refractory cancer, received PPC consultation at an academic children's hospital, and died between January 2008 and January 2017. Information was extracted regarding the child's treatment, EOL care, and the content of PPC consultation over the course of the team's relationship with the child/family. Results: Fifty-six children were included in the analysis. The most frequent reasons for the initial consult were pain (n = 31, 55%) and non-pain symptom management (n = 18, 32%). At the initial consult, the PPC team most often discussed symptom management and psychosocial support. Prognosis was not discussed in any initial consult. Over subsequent visits, the PPC team expanded their scope of discussion to include goals of care, advance care planning, and hospice. Discussion: Concerns from oncology clinicians that PPC teams will extend beyond the reasons for initial consult into prognostic/EOL discussions at the first visit may be unfounded. Greater familiarity with PPC team practices may facilitate more timely consultation of PPC and its complementary set of services.
Identifier
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<a href="http://doi.org/10.1177/27527530221140069" target="_blank" rel="noreferrer noopener">10.1177/27527530221140069</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).
2023
2023 SE3 - Oncology
Bogetz JF
Collins G
end-of-life
Hermiston M
Journal of Pediatric Hematology/Oncology Nursing
Koo J
Palliative Care
Pediatric Oncology
Penumarthy NL
Recurrence
Referral And Consultation
Root MC
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3389/fpain.2023.1127800" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fpain.2023.1127800</a>
Dublin Core
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Title
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Regional blocks for pain control at the end of life in pediatric oncology
Publisher
An entity responsible for making the resource available
Frontiers in Pain Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
palliative care; end of life; pain management; pediatric oncology; continuous nerve block; single-shot nerve block
Creator
An entity primarily responsible for making the resource
Cuviello A; Cianchini de la Sota A; Baker J; Anghelescu D
Description
An account of the resource
BACKGROUND: Pain management at the end of life is a fundamental aspect of care and can improve patients' quality of life. Interventional approaches may be underutilized for pediatric cancer patients. OBJECTIVE: To describe a single institution's 10 years of experience with regional pain management at the end of life in pediatric oncology. METHODS: A retrospective cohort study of 27 patients with pediatric cancer who died between April 2011 and December 2021 and received continuous nerve block (CNB) catheters or single-shot nerve blocks (SSBs) during their last three months of life. The type of blocks, analgesic efficacy, and palliative care involvement were evaluated. RESULTS: Twenty-two patients (81.5%) had solid tumor diagnoses, including carcinomas, sarcomas, and neuroblastoma. Most (59%) patients received CNB catheters, and 12 patients (44%) received SSBs for pain control. The mean pain score decreases for CNB catheters and SSBs after interventions were -2.5 and -2.8, respectively, on an 11-point scale. Decreases in opioid patient-controlled analgesia dosing requirements were noted in 56% of patients with CNB catheters; likewise, in 25% of patients with SSBs at 24 h and in 8% at 5 days after interventions. Nearly all patients had PC involvement and received care from pain specialists (96% and 93%, respectively). Twenty-three (85%) had physician orders for scope of treatment orders completed before death. CONCLUSION: Regional pain control interventions can be effective and safe for relieving regional pain and suffering in dying children and young adults. The collaboration between palliative care and pain management specialists at the end of life can help alleviate suffering and improve quality of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fpain.2023.1127800" target="_blank" rel="noreferrer noopener">10.3389/fpain.2023.1127800</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).
2023
2023 SE3 - Oncology
Anghelescu D
Baker J
Cianchini de la Sota A
continuous nerve block
Cuviello A
End Of Life
Frontiers in Pain Research
Pain Management
Palliative Care
Pediatric Oncology
single-shot nerve block
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.4103/jrms.jrms_268_22" target="_blank" rel="noreferrer noopener"> http://doi.org/10.4103/jrms.jrms_268_22</a>
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Title
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The physical and psychological outcomes of art therapy in pediatric palliative care: A systematic review
Publisher
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Journal of Research in Medical Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; pediatric; neoplasm; cancer; Art therapies
Creator
An entity primarily responsible for making the resource
Motlagh EG; Bakhshi M; Davoudi N; Ghasemi A; Moonaghi HK
Description
An account of the resource
BACKGROUND: The integration of art therapy in health care is a growing trend in the care of cancer patients. Therefore, this study aimed to identify the physical and mental benefits of art in children with cancer. MATERIALS AND METHODS: A systematic review of English articles using Google Scholar, MEDLINE via PubMed, Scopus, the Cochrane Database of Systematic Reviews, and the Web of Science was conducted. Relevant keywords for cancer, child, art therapy and their synonyms were used accordingly. All searches were conducted to December 31, 2021.Relevant articles were included studies published in English and involving children aged 0-18 years. Studies evaluated the effects of art therapy in children with cancer. RESULTS: Seventeen studies had inclusion criteria, of which 12 studies were performed by clinical trial and 5 studies were performed by quasi-experimental method. Sixteen studies evaluated one type of art-therapy intervention, while one study used a combination of art-therapy approaches.The results showed that art-based interventions in the physical dimension lead to more physical activity, stability in breathing, and heart rate, and these children reported less pain. In the dimensions of psychology had less anxiety, depression, and anger but at the same time had a better quality of life and more coping-related behaviors. CONCLUSION: It seems that the use of art therapy in pediatric palliative care with cancer can have good physical and psychological results for the child, but it is suggested to evaluate the effects of these interventions in children at the end of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.4103/jrms.jrms_268_22" target="_blank" rel="noreferrer noopener">10.4103/jrms.jrms_268_22</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).
2023
2023 SE3 - Oncology
Art therapies
Bakhshi M
Cancer
Davoudi N
Ghasemi A
Journal of Research in Medical Sciences
Moonaghi HK
Motlagh EG
Neoplasm
Palliative Care
Pediatric
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1118992</a>
Dublin Core
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Title
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Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
Publisher
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Frontiers in Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; female; human; male; palliative therapy; Information Dissemination; caregiver; health care personnel; human experiment; health care policy; cross-sectional study; adolescent; Jordan; qualitative research; attitude to health; semi structured interview; pediatric patient; Jordanian; implicit bias; advanced cancer/dm [Disease Management]; doctor patient relationship; medical information; refugee; health care practice; myelodysplastic syndrome; myeloproliferative disorder; reticuloendothelial tumor
Creator
An entity primarily responsible for making the resource
Alarjeh G; Boufkhed S; Alrjoub W; Guo P; Yurdusen S; Ahmed F; Abdal-Rahman M; Alajarmeh S; Alnassan A; Al-Awady S; Kutluk T; Harding R; Shamieh O
Description
An account of the resource
Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Method(s): A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Finding(s): Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion(s): The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.Copyright © 2023 Alarjeh, Boufkhed, Alrjoub, Guo, Yurdusen, Ahmed, Abdal-Rahman, Alajarmeh, Alnassan, Al-Awady, Kutluk, Harding and Shamieh.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1118992</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).
2023
2023 SE3 - Oncology
Abdal-Rahman M
Adolescent
Adult
advanced cancer/dm [Disease Management]
Ahmed F
Al-Awady S
Alajarmeh S
Alarjeh G
Alnassan A
Alrjoub W
Article
Attitude To Health
Boufkhed S
Caregiver
Child
Cross-sectional Study
doctor patient relationship
Female
Frontiers in Oncology
Guo P
Harding R
Health Care Personnel
Health Care Policy
health care practice
Human
Human Experiment
implicit bias
Information Dissemination
Jordan
Jordanian
Kutluk T
Male
Medical Information
myelodysplastic syndrome
myeloproliferative disorder
Palliative Therapy
pediatric patient
Qualitative Research
refugee
reticuloendothelial tumor
Semi Structured Interview
Shamieh O
Yurdusen S
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1001/jamanetworkopen.2023.13503" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2023.13503</a>
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Title
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Parent Priorities in End-of-Life Care for Children With Cancer
Publisher
An entity responsible for making the resource available
JAMA Network Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Terminal Care; terminal care; female; human; death; child parent relation; psychology; cross-sectional study; middle aged; neoplasm/th [Therapy]; Bayes theorem
Creator
An entity primarily responsible for making the resource
Ananth P; Lindsay M; Mun S; McCollum S; Shabanova V; de Oliveira S; Pitafi S; Kirch R; Ma X; Gross CP; Boyden JY; Feudtner C; Wolfe J
Description
An account of the resource
Importance: Robust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed. Objective(s): To prioritize quality measures among parents who lost a child to cancer. Design, Setting, and Participant(s): This survey study was conducted using an electronic, cross-sectional discrete choice experiment (DCE) with maximum difference scaling from January to June 2021 in the US. In each of 21 questions in the DCE, participants were presented with a set of 4 quality measures and were asked to select the most and least important measures within each set. All 28 quality measures were presented an equal number of times in different permutations. In the volunteer sample, 69 eligible bereaved parents enrolled in the study; 61 parents completed the DCE (participation rate, 88.4%). Main Outcomes and Measures: Using choices participants made, a hierarchical bayesian multinomial logistic regression was fit to derive mean importance scores with 95% credible intervals (95% Crs) for each quality measure, representing the overall probability of a quality measure being selected as most important. Importance scores were rescaled proportionally from 0 to 100, with the sum of scores for all quality measures adding up to 100. This enabled interpretation of scores as the relative importance of quality measures. Result(s): Participants included 61 bereaved parents (median [range] age, 48 [24-74] years; 55 individuals self-identified as women [90.2%]; 1 American Indian or Alaska Native [1.6%], 1 Asian [1.6%], 2 Black or African American [3.3%], 1 Native Hawaiian or Pacific Islander, and 58 White [91.8%]; 58 not Hispanic or Latinx [95.1%]). Highest-priority quality measures by mean importance score included having a child's symptoms treated well (9.25 [95% Cr, 9.06-9.45]), feeling that a child's needs were heard by the health care team (8.39 [95% Cr, 8.05-8.73]), and having a goal-concordant end-of-life experience (7.45 [95% Cr, 6.84-8.05]). Lowest-priority quality measures included avoiding chemotherapy (0.33 [95% Cr, 0.21-0.45]), provision of psychosocial support for parents (1.01 [95% Cr, 0.57-1.45]), and avoiding the intensive care unit (1.09 [95% Cr, 0.74-1.43]). Rank-ordering measures by mean importance revealed that symptom management was 9 times more important to parents than psychosocial support for themselves. Conclusions and Relevance: This study found that bereaved parents prioritized end-of-life quality measures focused on symptom management and goal-concordant care while characterizing quality measures assessing their own psychosocial support and their child's hospital resource use as substantially less important. These findings suggest that future research should explore innovative strategies to measure care attributes that matter most to families of children with advanced cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamanetworkopen.2023.13503" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.13503</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).
2023
2023 SE3 - Oncology
Ananth P
Bayes Theorem
Boyden JY
Child
Child Parent Relation
Cross-sectional Study
de Oliveira S
Death
Female
Feudtner C
Gross CP
Human
JAMA Network Open
Kirch R
Lindsay M
Ma X
McCollum S
Middle Aged
Mun S
neoplasm/th [Therapy]
Pitafi S
Psychology
Shabanova V
Terminal 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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1080/02739615.2023.2199161" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/02739615.2023.2199161</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
Caregiver preferences for palliative care in pediatric oncology: an educational intervention
Publisher
An entity responsible for making the resource available
Children's Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; Palliative Care; childhood cancer; article; controlled study; human; Caregivers; palliative therapy; clinical article; caregiver
Creator
An entity primarily responsible for making the resource
Gallegos JV; Nelson CI; Conour CN; Ludrosky J; Tomboc P; Dower J; Duncan CL
Identifier
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<a href="http://doi.org/10.1080/02739615.2023.2199161" target="_blank" rel="noreferrer noopener">10.1080/02739615.2023.2199161</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).
2023
2023 SE3 - Oncology
Article
Caregiver
Caregivers
Child
Childhood Cancer
Children's Health Care
Clinical Article
Conour CN
Controlled Study
Dower J
Duncan CL
Gallegos JV
Human
Ludrosky J
Nelson CI
Palliative Care
Palliative Therapy
Tomboc 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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.12968/ijpn.2023.29.4.188" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12968/ijpn.2023.29.4.188</a>
Dublin Core
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Title
A name given to the resource
Nurses' effort for providing end-of-life care in paediatric oncology: a phenomenological study
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
2023
Subject
The topic of the resource
child; Terminal Care; childhood cancer; terminal care; article; female; human; male; palliative therapy; clinical article; personal experience; nurse; care behavior; phenomenology; analgesia; honesty; oncology nurse; psychotrauma
Creator
An entity primarily responsible for making the resource
Ghaljeh M; Rezaee N; Mardani-Hamooleh M
Description
An account of the resource
BACKGROUND: Many children with cancer are hospitalised before the end of life and need special care. To improve the delivery of care for children, it is necessary to understand the insights, emotions and feelings of nurses. AIM: This study aimed to explore the lived experiences of nurses providing end-of-life care for children with cancer. <br/>METHOD(S): A phenomenological hermeneutic approach was used to analyse the experience of 14 oncology nurses working in a children's hospital who were caring for children with cancer. FINDINGS: Three themes and seven subthemes emerged from the analysis. The three main themes were: pain management (relieving physical pain and reducing the mental pain of the child and family); respect-based care (for the values and beliefs of the child and family and honesty in providing information to them); and negative reflections of care (psychological trauma, cultural challenges and futile care). <br/>CONCLUSION(S): The results of the present study showed that, despite the problems experienced by the nurses, they were still trying to provide life-sustaining care for children with cancer.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2023.29.4.188" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.4.188</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).
2023
2023 SE3 - Oncology
Analgesia
Article
care behavior
Child
Childhood Cancer
Clinical Article
Female
Ghaljeh M
Honesty
Human
International Journal of Palliative Nursing
Male
Mardani-Hamooleh M
Nurse
oncology nurse
Palliative Therapy
Personal Experience
Phenomenology
psychotrauma
Rezaee N
Terminal Care
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.pedn.2022.12.004" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pedn.2022.12.004</a>
Dublin Core
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Title
A name given to the resource
Experiences with the end-of-life decision-making process in children with cancer, their parents, and healthcare professionals: A systematic review and meta-ethnography
Publisher
An entity responsible for making the resource available
Journal of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Child; Delivery of Health Care; Decision Making; Pediatric; Qualitative Research; Decision-making; Cancer; Anthropology Cultural; Only Child; Death; End-of-life; Neoplasms/therapy; Parents/psychology; Meta-ethnography
Creator
An entity primarily responsible for making the resource
Hirata M; Kobayashi K
Description
An account of the resource
BACKGROUND: Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their social interactions during the EOL decision-making process in the pediatric oncology setting. METHODS: Meta-ethnography was used to conduct a systematic review and meta-synthesis. We searched four online databases to identify original studies published in English and Japanese and examined 21 relevant studies. Two Japanese reviewers discussed the differences/relationships and included studies that synthesized the translated qualitative findings. A conceptual model of social interactions was created. RESULTS: We identified four themes regarding children's, parents', and HCPs' experiences: hope and confrontation with the child's death, guidance and support during uncertainty, awareness of being protected and having hope, and mutual unspoken integration of values. CONCLUSIONS: These themes evince the experiences of children, parents, and HCPs during the EOL decision-making process and suggests a complex three-way social interaction model. While considering such distinctive social interactions during a child's EOL, this study revealed the sharing of prudent information and psychosocial support by HCPs. The findings indicate that hope and uncertainty are key elements for effectively understanding the experiences of children and parents and that EOL decision-making should not be rushed but should be supported by leaving room for uncertainty and acknowledging parents' emotional needs and fostering new hope. Further research into how hope can be further supported in situations that are rife with uncertainty is needed.
Identifier
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<a href="http://doi.org/10.1016/j.pedn.2022.12.004" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.12.004</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).
2023
2023 SE3 - Oncology
Anthropology Cultural
Cancer
Child
Death
Decision Making
Decision-making
Delivery of Health Care
end-of-life
Hirata M
Humans
Journal of Pediatric Nursing
Kobayashi K
meta-ethnography
Neoplasms/therapy
Only Child
Parents/psychology
Pediatric
Qualitative Research
-
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.5209/psic.78677" target="_blank" rel="noreferrer noopener"> http://doi.org/10.5209/psic.78677</a>
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Title
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The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team
Publisher
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Psicooncologia
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; article; female; human; male; chronic disease; palliative therapy; psychology; anxiety; clinical article; follow up; cross-sectional study; health service; cancer diagnosis; questionnaire; coronavirus disease 2019; pandemic; semi structured interview
Creator
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de Sena JGM; Melo CF; de Vasconcelos AV; Teixeira LC; Ruiz EM; Alves RSF
Description
An account of the resource
Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as challenging professionals to access issues related to grief. Objective(s): In order to explore this reality, this study intended to analyze how professionals experience grieving processes in the exercise of palliative care in pediatric oncology. Method(s): A qualitative research was conducted with the participation of 23 health professionals working in palliative oncology and pediatric care, who responded to a semi-structured interview script, whose analyses were performed with the support of the IRaMuTeQ (Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires) software. Result(s): The results were organized in four classes: in class 1, the specificities of the treatment of children with cancer and other aspects related to chronic illness are portrayed; class 2 shows that health trainings do not prepare professionals to deal with death and with patients with no possibility of cure, and these professionals have (pre-) concepts about palliative care; class 3 highlights the principles of palliative care and other factors of the work in this therapy; and class 4 deals with the bonds formed by professionals and their grieving experiences. Conclusion(s): Cure must not be a requirement for the provision of care in relation to children with cancer that can benefit from the adoption of palliative care therapy and the validation of the sensitivity of professionals.Copyright © 2023, Universidad Compultense Madrid. All rights reserved.
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<a href="http://doi.org/10.5209/psic.78677" target="_blank" rel="noreferrer noopener">10.5209/psic.78677</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).
2023
2023 SE3 - Oncology
Alves RSF
anxiety
Article
Cancer Diagnosis
Chronic Disease
Clinical Article
coronavirus disease 2019
Cross-sectional Study
de Sena JGM
de Vasconcelos AV
Female
Follow Up
Health Service
Human
Male
Melo CF
Palliative Care
Palliative Therapy
Pandemic
Psicooncologia
Psychology
Questionnaire
Ruiz EM
Semi Structured Interview
Teixeira LC
-
Dublin Core
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3390/children9060777" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9060777</a>
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Title
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Palliative Care for Childhood Cancer
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
child; Palliative Care; human; quality of life; family; home care; practice guideline; pain; Netherlands; cancer patient; physician; hope; health care quality; hospital care; health care planning; health care access; health care personnel; daily life activity; cancer palliative therapy; evidence based practice; medical education; editorial; nausea; child health care; collaborative care team; vomiting; hematopoietic stem cell transplantation; nurse; disease burden; advanced cancer; cause of death; patient worry; health care need; illness trajectory; childhood cancer/th [Therapy]; personalized cancer therapy
Creator
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Michiels EM
Description
An account of the resource
Cure rates for children with cancer are improving, but often at the cost of quality of life during treatment [...].
Identifier
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<a href="http://doi.org/10.3390/children9060777" target="_blank" rel="noreferrer noopener">10.3390/children9060777</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).
2022
2023 SE3 - Oncology
Advanced Cancer
Cancer Palliative Therapy
Cancer Patient
Cause Of Death
Child
Child Health Care
childhood cancer/th [Therapy]
Children
collaborative care team
daily life activity
Disease Burden
Editorial
evidence based practice
Family
Health Care Access
health care need
Health Care Personnel
health care planning
Health Care Quality
Hematopoietic stem cell transplantation
Home Care
Hope
Hospital care
Human
illness trajectory
Medical Education
Michiels EM
Nausea
Netherlands
Nurse
Pain
Palliative Care
patient worry
personalized cancer therapy
Physician
Practice Guideline
Quality Of Life
Vomiting
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/03008916231168670" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/03008916231168670</a>
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End-of-Life transfusion support at hospice and pediatric oncology unit: Bridging the gap between benefits and therapeutic alliance
Publisher
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Tumori
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
hospice; Hospices; complete blood counts; Pediatric oncology unit; platelets; red cells; transfusion
Creator
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Nigro O; Podda MG; Pellegatta F; Schiavello E; Clerici CA; Catalano I; Visconti G; Albarini M; Luksch R; Terenziani M; Ferrari A; Casanova M; Biassoni V; Meazza C; Spreafico F; Gattuso G; Sironi G; Puma N; Bergamaschi L; Chiaravalli S; Massimino M
Description
An account of the resource
OBJECTIVES: Although transfusion support is commonly used in oncological palliative care, there is still a paucity of literature. We examined the transfusion support provided in the terminal stage of the disease and compared the approach at a pediatric oncology unit and a pediatric hospice. CASE DESCRIPTION: This case series analyzed patients treated at the Fondazione IRCCS Istituto Nazionale dei Tumori di Milano (INT)'s pediatric oncology unit who died between January 2018 and April 2022. We compared these with those who died at the VIDAS hospice and analyzed the number of complete blood counts taken in a patient's last 14 days of life, and the number of transfusions performed in the same period.We analyzed 44 patients (22 in pediatric oncology unit; 22 in hospice) in total. Twenty-eight complete blood counts were performed (7/22 patients at the hospice; 21/22 patients at the pediatric oncology unit). Nine patients were given transfusions, three at the hospice, six at our pediatric oncology unit (24 transfusions in total): 20 transfusions at the pediatric oncology unit, four at the hospice. In total 17/44 patients were given active therapies in the last 14 days of life: 13 at the pediatric oncology unit, four at the pediatric hospice. Ongoing cancer treatments did not correlate with a greater likelihood of receiving a transfusion (p=0.91). CONCLUSIONS: The hospice's approach was more conservative than the pediatric oncology one. In the in-hospital setting, the need for a transfusion cannot always be decided on by a combination of numerical values and parameters alone. The family's emotional-relational response must be considered too.
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<a href="http://doi.org/10.1177/03008916231168670" target="_blank" rel="noreferrer noopener">10.1177/03008916231168670</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).
2023
2023 SE3 - Oncology
Albarini M
Bergamaschi L
Biassoni V
Casanova M
Catalano I
Chiaravalli S
Clerici CA
complete blood counts
Ferrari A
Gattuso G
Hospice
Hospices
Luksch R
Massimino M
Meazza C
Nigro O
Pediatric oncology unit
Pellegatta F
platelets
Podda MG
Puma N
red cells
Schiavello E
Sironi G
Spreafico F
Terenziani M
transfusion
Tumori
Visconti G
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/08258597231173313" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/08258597231173313</a>
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Title
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Challenges Experienced by Nurses in Providing Pediatric Palliative Care: An Interpretive Phenomenological Analysis
Publisher
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Journal of Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; palliative care; Palliative Care; pediatrics; leukemia; nurses
Creator
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Judith RE; Al Omari O; Elizabeth JS; Francis F; Arulappan J; Shakman L; Al Hashmi A; Al Sabei S; Khalaf A
Description
An account of the resource
Objectives: Pediatric leukemia is the most common cancer among children younger than 14 years of age. Children with leukemia require palliative care as additional support from the health care team. Providing palliative care to children is challenging. Thus, this study explored the challenges experienced by nurses in providing pediatric palliative care to children with leukemia. Methods: Semi-structured face-to-face interviews were conducted on a purposive sample of 11 nurses in the hematology-oncology units of a tertiary care hospital in Oman. Results: Interviews were transcribed and analyzed using interpretive phenomenological analysis, which revealed three main themes and seven subthemes related to challenges in providing pediatric palliative care: Personal challenges: Nurses were unable to neutralize their emotions, which burdened them emotionally; due to multitasking, nurses were unable to manage their tasks within the expected time frame; nurses were stressful when they participated in explaining the diagnosis to the parents; and nurses felt powerless when the health condition of some children deteriorated. Educational challenges: Nurses felt unprepared to meet the physical/psychosocial aspects of caring for children with leukemia. Organizational challenges: Nurses stated that families and nurses required rooms to pray, rest, and read Quran, and they needed a private place to speak to families; and nurses mentioned that there are limited number of psychologists to meet the psychological and social needs of children and their families. Conclusion: Prioritizing and implementing strategies for a supportive workplace, guided clinical practice, and maximizing nurses' satisfaction are crucial.
Identifier
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<a href="http://doi.org/10.1177/08258597231173313" target="_blank" rel="noreferrer noopener">10.1177/08258597231173313</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).
2023
2023 SE3 - Oncology
Al Hashmi A
Al Omari O
Al Sabei S
Arulappan J
Child
Elizabeth JS
Francis F
Journal Of Palliative Care
Judith RE
Khalaf A
Leukemia
Nurses
Palliative Care
Pediatrics
Shakman L
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0063</a>
Dublin Core
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Title
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Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Palliative Care; pediatric palliative care; Referral and Consultation; advance care planning; end of life; childhood cancer; supportive care; pediatric oncology
Creator
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Lee A; DeGroote NP; Brock KE
Description
An account of the resource
Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.
Identifier
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<a href="http://doi.org/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0063</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).
2023
2023 SE3 - Oncology
Advance Care Planning
Brock KE
Childhood Cancer
DeGroote NP
End Of Life
Journal of Palliative Medicine
Lee A
Palliative Care
Pediatric Oncology
Pediatric Palliative Care
Referral And Consultation
Supportive Care
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12906-023-03924-x</a>
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Title
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Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Publisher
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BMC Complementary Medicine and Therapies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Canada; United States; Germany; childhood cancer; adult; article; cancer chemotherapy; female; human; male; quality of life; palliative therapy; aged; education; Netherlands; anxiety; philosophy; Norway; clinical article; interview; content analysis; health care personnel; qualitative research; cancer therapy; insomnia; fatigue; acute lymphoblastic leukemia; leukemia; constipation; nausea; semi structured interview; vomiting; alternative medicine; nurse; music therapy; dietitian; acupuncture; aromatherapy; integrative medicine; massage; professional practice; acupressure; play therapy; psychodrama; vincristine
Creator
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Mora DC; Jong MC; Quandt SA; Arcury TA; Kristoffersen AE; Stub T
Description
An account of the resource
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Netherlands, and the United States have with the use of supportive care, including CAM among children and adolescents with cancer. Method(s): A qualitative study was conducted using semi-structured in-depth interviews (n = 22) with healthcare providers with clinical experience working with CAM and/or other supportive care among children and adolescents with cancer from five different countries. Participants were recruited through professional associations and personal networks. Systematic content analysis was used to delineate the main themes. The analysis resulted in three themes and six subthemes. Result(s): Most participants had over 10 years of professional practice. They mostly treated children and adolescents with leukemia who suffered from adverse effects of cancer treatment, such as nausea and poor appetite. Their priorities were to identify the parents' treatment goals and help the children with their daily complaints. Some modalities frequently used were acupuncture, massage, music, and play therapy. Parents received information about supplements and diets in line with their treatment philosophies. They received education from the providers to mitigate symptoms and improve the well-being of the child. Conclusion(s): Clinical experiences of pediatric oncology experts, conventional health care providers, and CAM providers give an understanding of how supportive care modalities, including CAM, are perceived in the field and how they can be implemented as adaptational tools to manage adverse effects and to improve the quality of life of children diagnosed with cancer and the families.Copyright © 2023, The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12906-023-03924-x" target="_blank" rel="noreferrer noopener">10.1186/s12906-023-03924-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).
2023
2023 SE3 - Oncology
acupressure
Acupuncture
Acute Lymphoblastic Leukemia
Adult
Aged
alternative medicine
anxiety
Arcury TA
Aromatherapy
Article
BMC Complementary Medicine and Therapies
Canada
Cancer Chemotherapy
Cancer Therapy
Childhood Cancer
Clinical Article
Constipation
Content Analysis
dietitian
Education
Fatigue
Female
Germany
Health Care Personnel
Human
insomnia
Integrative Medicine
Interview
Jong MC
Kristoffersen AE
Leukemia
Male
Massage
Mora DC
Music Therapy
Nausea
Netherlands
Norway
Nurse
Palliative Therapy
Philosophy
Play Therapy
Professional Practice
psychodrama
Qualitative Research
Quality Of Life
Quandt SA
Semi Structured Interview
Stub T
United States
vincristine
Vomiting
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12968/ijpn.2023.29.5.236</a>
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Title
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The need of patients living with cancer for palliative care
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
2023
Subject
The topic of the resource
Health Services Needs and Demand; Palliative Care; Neoplasms; Anxiety; Questionnaires; Adult; Psychometrics; Adolescence; Middle Age; Health Services Accessibility; Aged; Depression; Stress Psychological; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Nursing; Self Report; Palliative Care Nursing; Chi Square Test; Jordan; Psychological Distress; Cross Sectional Studies; Patient Attitudes; Convenience Sample; Aged 80 and Over; Cancer Patients; Spiritual Care
Creator
An entity primarily responsible for making the resource
Alnajar MK; Abdalrahim MS; Mosleh SM; Farhan M; Amro K; Darawad MW
Description
An account of the resource
Background: A comprehensive assessment of patients' problems and needs is
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.5.236</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).
2023
2023 SE3 - Oncology
Abdalrahim MS
Adolescence
Adult
Aged
Aged 80 And Over
Alnajar MK
Amro K
anxiety
cancer patients
Chi Square Test
Convenience Sample
Cross Sectional Studies
Darawad MW
Data Analysis Software
Depression
Descriptive Research
Descriptive Statistics
Farhan M
Health Services Accessibility
Health Services Needs And Demand
Human
International Journal of Palliative Nursing
Jordan
Middle Age
Mosleh SM
Neoplasms
Nursing
Palliative Care
Palliative Care Nursing
Patient Attitudes
Psychological Distress
Psychometrics
Questionnaires
Self Report
Spiritual Care
Stress Psychological
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1177/02692163231165100" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231165100</a>
Dublin Core
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Title
A name given to the resource
Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Humans; Parents; Child; Palliative Care; Quality of Life; Qualitative Research; Neoplasms; Only Child; Terminal Care; Death
Creator
An entity primarily responsible for making the resource
Lin N; Lv D; Hu Y; Zhu J; Xu H; Lai D
Description
An account of the resource
BACKGROUND: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have focused on the end-of-life experiences of children., AIM: To advance the understanding of end-of-life experiences and perceptions of death in children with cancer., DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analyzed using reflexive thematic analysis., SETTING/PARTICIPANTS: The study was conducted at the department of oncological surgery, Children's Hospital, Zhejiang University School of Medicine. Ten children aged 8-17 with terminal cancer were included in the study., RESULTS: Four major themes (and eight sub-themes) were identified from the findings: (1) helplessness in the face of death (loneliness, loss of control); (2) desire to connect with the world they left (reluctantly to be forgotten, sense of self-worth); (3) perceptions and attitudes toward death (separating from loved ones, embracing death); (4) expectations of future life (promoting comfort, fulfilling wishes)., CONCLUSIONS: Children with terminal cancer have a strong sense of loneliness and a desire to connect with the world they have left behind. Differences in children's perceptions and attitudes about death suggest that healthcare professionals should focus on their experiences and needs and provide personalized palliative care services to children and their families to improve their quality of life.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163231165100" target="_blank" rel="noreferrer noopener">10.1177/02692163231165100</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).
2023
2023 SE3 - Oncology
Child
Death
Hu Y
Humans
Lai D
Lin N
Lv D
Neoplasms
Only Child
Palliative Care
Palliative Medicine
Parents
Qualitative Research
Quality Of Life
Terminal Care
Xu H
Zhu J
-
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/NCC.0000000000000783</a>
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Title
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Treatment Decision Making and Regret in Parents of Children With Incurable Cancer
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Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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Child; child; Decision Making; article; controlled study; female; human; male; palliative therapy; education; Only Child; risk factor; prospective study; multicenter study; decision making; propensity score; incurable cancer; risk perception
Creator
An entity primarily responsible for making the resource
Ye ZJ; Cheng MH; Zhang XY; Tang Y; Liang J; Sun Z; Liang MZ; Yu YL
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<a href="http://doi.org/10.1097/NCC.0000000000000783" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000783</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).
2021
2023 SE3 - Oncology
Article
Cancer Nursing
Cheng MH
Child
Controlled Study
Decision Making
Education
Female
Human
incurable cancer
Liang J
Liang MZ
Male
Multicenter Study
Only Child
Palliative Therapy
Propensity Score
Prospective Study
risk factor
risk perception
Sun Z
Tang Y
Ye ZJ
Yu YL
Zhang XY
-
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30541" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30541</a>
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Mixed-methods analysis of decisional regret in parents following a child's death from cancer
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
2023
Subject
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Child; grief; Only Child; parent; decisional regret; mixed methods
Creator
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Feifer D; Broden EG; Xiong N; Mazzola E; Baker JN; Wolfe J; Snaman JM
Description
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BACKGROUND AND OBJECTIVES: Decisional regret is common in bereaved parents. We aimed to identify factors associated with and to explain patterns of parental decisional regret. METHODS: We used a convergent mixed-methods design including quantitative items and free-text responses from a survey of parents 6-24 months from their child's death from cancer. Parents expressed whether they had regrets about decisions during the end of their child's life (Yes/No/I don't know) and elaborated with free text. Results of qualitative content analysis of free-text responses guided development and interpretation of quantitative multinomial models. RESULTS: Parents (N = 123 surveys, N = 84 free text) primarily identified as White (84%), mothers (63%), and primary caregivers (69%) for their children. Forty-seven (38%) parents reported decisional regret, 61 (49%) indicated no regret, and 15 (12%) were unsure. Mothers (relative risk [RR]: 10.3, 95%CI: [1.3, 81.3], p = .03) and parents who perceived greater suffering at the end of their child's life (RR = 3.8, 95%CI: [1.2, 11.7], p = .02) were at increased risk of regret; qualitative evaluation revealed elements of self-blame and difficulty reconciling treatment choices with the ultimate outcome. Preparation for symptoms was associated with decreased risk of regret (RR = 0.1, 95%CI: [0, .3], p < .01) with qualitative reflections focused on balanced teamwork that alerted parents for what to expect and how to make meaningful final memories. CONCLUSIONS: Though decisional regret is common among cancer-bereaved parents, mothers and those who perceive more suffering in their children may be at particular risk. Close collaboration between families and clinicians to prepare for symptoms and proactively attend to and minimize suffering may help alleviate decisional regret.
Identifier
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<a href="http://doi.org/10.1002/pbc.30541" target="_blank" rel="noreferrer noopener">10.1002/pbc.30541</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).
2023
2023 SE3 - Oncology
Baker JN
Broden EG
Child
Decisional regret
Feifer D
Grief
Mazzola E
Mixed methods
Only Child
Parent
Pediatric Blood and Cancer
Snaman JM
Wolfe J
Xiong N
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30484</a>
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Title
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Unfolding parental knowledge, attitudes, and beliefs toward palliative care for children with cancer
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
2023
Subject
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child; Palliative Care; childhood cancer; article; female; human; major clinical study; male; palliative therapy; pain; education; pediatrics; emotion; multicenter study; quantitative analysis; caregiver; questionnaire; structured interview; demography; Lebanon; educational status
Creator
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Rassam RS; Huijer HAS; Noureddine S; Smith EML; Wolfe J; Fares S; Abboud MR
Identifier
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<a href="http://doi.org/10.1002/pbc.30484" target="_blank" rel="noreferrer noopener">10.1002/pbc.30484</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).
2023
2023 SE3 - Oncology
Abboud MR
Article
Caregiver
Child
Childhood Cancer
Demography
Education
Educational Status
Emotion
Fares S
Female
Huijer HAS
Human
Lebanon
Major Clinical Study
Male
Multicenter Study
Noureddine S
Pain
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
Pediatrics
quantitative analysis
Questionnaire
Rassam RS
Smith EML
Structured Interview
Wolfe J
-
Dublin Core
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1200/JCO.2023.41.16_suppl.10021" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1200/JCO.2023.41.16_suppl.10021</a>
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Intensity at the end of life in pediatric neuro-oncology patients: The case for pediatric palliative care.
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Journal of Clinical Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Neuro; Oncology; Child
Creator
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Udemgba C; Hoehn KS; Darlington WS; Palama B
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<a href="http://doi.org/10.1200/JCO.2023.41.16_suppl.10021" target="_blank" rel="noreferrer noopener">10.1200/JCO.2023.41.16_suppl.10021</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).
2023
2023 SE3 - Oncology
Child
Darlington WS
Hoehn KS
Journal Of Clinical Oncology
Neuro
Oncology
Palama B
Udemgba C
-
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
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30561" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30561</a>
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Title
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Embracing paediatric palliative care in paediatric oncology from diagnosis onwards
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
2023
Subject
The topic of the resource
palliative care; Palliative Care; oncology; early integration; paediatrics; models of care; multidisciplinary care team
Creator
An entity primarily responsible for making the resource
Lacerda A; Martínez MA; Dumont B; Leiss U; Kokkinou G; Scheinemann K; Craig F
Description
An account of the resource
Paediatric palliative care aims to support children and young people with life-limiting or life-threatening conditions, and their families, from the time of diagnosis. Early integration within oncology has been recognised as having benefits for all involved, whatever the outcome may be. Through improved communication and advance care planning, it enables user-centred care, where concerns about quality of life, preferences and values are given the same relevance as cutting-edge therapy. Challenges to the integration of palliative care within paediatric oncology include raising awareness and providing education, whilst searching for the best care model and adapting to an ever-changing therapeutic scenario.
Identifier
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<a href="http://doi.org/10.1002/pbc.30561" target="_blank" rel="noreferrer noopener">10.1002/pbc.30561</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).
2023
2023 SE3 - Oncology
Craig F
Dumont B
early integration
Kokkinou G
Lacerda A
Leiss U
Martínez MA
models of care
Multidisciplinary Care Team
Oncology
Paediatrics
Palliative Care
Pediatric Blood and Cancer
Scheinemann K
-
Dublin Core
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Title
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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.soncn.2023.151474</a>
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Title
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A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer
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
2023
Subject
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Parents; Children; End of life; Cancer; Family-centered care; Systematic review
Creator
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Sheehan S; Hanna JR; Drury A; McCance T; Semple CJ; O'Neill C
Description
An account of the resource
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for parents dying with cancer who have dependent children. DATA SOURCES: The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A search strategy was developed with assistance of subject librarians and peer-reviewed using the Peer Review of Electronic Search Strategies tool. A search of MEDLINE OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC electronic databases and gray literature was conducted. Quality assessment was conducted on included studies. Data synthesis was conducted using a convergent integrated approach. CONCLUSION: The review identified just two educational interventions, highlighting the dearth of educational interventions available to HSCPs to provide supportive care to families when a parent is at EoL with cancer. The identified interventions were of good methodological quality and were positively evaluated by participants, enhancing their confidence to engage in EoL conversations. It is imperative that interventions that use robust evaluation methods are developed and made accessible to HSCPs. IMPLICATIONS FOR NURSING PRACTICE: The review highlights the urgent need for the development of interventions for HSCPs to provide supportive care to families when a parent is at EoL with cancer. This is a fundamental aspect of care, and it is imperative that accessible educational interventions are developed to improve the quality of care and reduce distress for patients and their families.
Identifier
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<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener">10.1016/j.soncn.2023.151474</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).
2023
2023 SE3 - Oncology
Cancer
Children
Drury A
End Of Life
Family-centered Care
Hanna JR
McCance T
O'Neill C
Parents
Seminars In Oncology Nursing
Semple CJ
Sheehan S
Systematic Review
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1089/jpm.2023.0091</a>
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Title
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Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers
Publisher
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Journal of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; Animals; Anxiety; article; controlled study; female; human; male; Caregivers; patient care; palliative therapy; advanced cancer; caregiver; cancer patient; cancer recurrence; Only Child; nonhuman; dog; animal experiment; animal model; feasibility study; anxiety; pediatric patient; comparative effectiveness; Animal Shells; anticipation; refractory disease; State Trait Anxiety Inventory
Creator
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Mahoney AB; Akard TF; Cowfer BA; Dietrich MS; Newton JL; Gilmer MJ
Description
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Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. Objective(s): To evaluate feasibility of incorporating AAI into patient care and to assess AAI effectiveness in decreasing patient and caregiver anxiety in pediatric patients with advanced cancer, defined by relapsed or refractory disease. Design(s): Randomized controlled study. Setting/Subjects: Participants were children (n=19) and parents (n=21) who were randomized to AAI group or usual care (UC) group. Measures: Participants completed weekly measures to assess anxiety, including the 20-question State-Trait Anxiety Inventory (STAI). Result(s): Our results demonstrated feasibility of the use of AAI in children with advanced cancer. While they did not reveal a significant difference in anxiety scores over the four sessions in either group, parents randomized to the AAI group had lower STAI State subscores at initial visit in comparison to the UC group. The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion(s): Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.
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<a href="http://doi.org/10.1089/jpm.2023.0091" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0091</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).
2023
2023 SE3 - Oncology
Advanced Cancer
Akard TF
Animal Experiment
Animal Model
Animal Shells
Animals
Anticipation
anxiety
Article
Cancer Patient
Cancer Recurrence
Caregiver
Caregivers
Child
Comparative Effectiveness
Controlled Study
Cowfer BA
Dietrich MS
Dog
Feasibility Study
Female
Gilmer MJ
Human
Journal of Palliative Medicine
Mahoney AB
Male
Newton JL
Nonhuman
Only Child
Palliative Therapy
Patient Care
pediatric patient
refractory disease
State Trait Anxiety Inventory
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2022.2142324</a>
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Title
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Protective and risk factors in the grieving process among cancer-bereaved
Publisher
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Parents; Female; Male; Risk Factors; Attitude to Death; Neoplasms; Quality of Life; Bereavement; Grief; Qualitative Studies; Human; Support Psychosocial; Thematic Analysis; Funding Source
Creator
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Rasouli O; Øglænd IS; Reinfjell T; Eilertsen MEB
Description
An account of the resource
This Norwegian nationwide study explored cancer-bereaved parents'
Identifier
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<a href="http://doi.org/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142324</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).
2023
2023 SE3 - Oncology
Attitude To Death
Bereavement
Death studies
Eilertsen MEB
Female
Funding Source
Grief
Human
Male
Neoplasms
Øglænd IS
Parents
Qualitative Studies
Quality Of Life
Rasouli O
Reinfjell T
Risk Factors
Support Psychosocial
Thematic Analysis
-
Dublin Core
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Title
A name given to the resource
2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/pbc.30663</a>
Dublin Core
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Title
A name given to the resource
Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic
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
2023
Subject
The topic of the resource
child; Palliative Care; article; controlled study; female; human; male; retrospective study; outpatient; palliative therapy; Referral and Consultation; Hematology; clinical article; consultation; medical record review; solid tumor; rank sum test; hematology; cancer model; health care delivery; embedding
Creator
An entity primarily responsible for making the resource
Greenmyer JR; Ngo T; Smith M; Collura C; Schiltz B; McCarthy SR
Description
An account of the resource
Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all-day clinic embedded within PHO. Method(s): Retrospective chart review was used to quantify consultation rates from PHO to PPC in 12-month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi-square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables. Result(s): There was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n = 20 vs. n = 38 per 12 months). The absolute number of completed outpatient consults increased from three (15% of visits) pre-embedment to fourteen (37%) post-embedment (p =.082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47 days, p =.98). Consults for solid tumors increased from 22% (n = 4) pre-embedment to 60% (n = 18) post-embedment (p <.05). Consults for symptom management increased from 60% (n = 12) to 87% (n = 33) (p <.05). Conclusion(s): Embedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our "partial-PPO" model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full-time oncology-focused clinician team.Copyright © 2023 Wiley Periodicals LLC.
Identifier
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<a href="http://doi.org/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener">10.1002/pbc.30663</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).
2023
2023 SE3 - Oncology
Article
cancer model
Child
Clinical Article
Collura C
Consultation
Controlled Study
embedding
Female
Greenmyer JR
Health Care Delivery
Hematology
Human
Male
McCarthy SR
Medical Record Review
Ngo T
Outpatient
Palliative Care
Palliative Therapy
Pediatric Blood and Cancer
rank sum test
Referral And Consultation
Retrospective Study
Schiltz B
Smith M
solid tumor
-
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2022.2142325</a>
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Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services
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Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Parents; Bereavement; Communication; Interviews; Referral and Consultation; Qualitative Studies; Empathy; Human; Thematic Analysis; Childhood Neoplasms; Patient Care; Psychosocial Factors
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Loxton I; Oxlad M; Perry A
Description
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Twelve Australian parents bereaved by childhood cancer were interviewed
Identifier
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<a href="http://doi.org/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142325</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).
2023
2023 SE3 - Oncology
Bereavement
Childhood Neoplasms
Communication
Death studies
Empathy
Human
Interviews
Loxton I
Oxlad M
Parents
Patient Care
Perry A
Psychosocial Factors
Qualitative Studies
Referral And Consultation
Thematic Analysis
-
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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2023 Special Edition 3 - 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s12094-023-03301-7</a>
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Title
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Palliative care for children with central nervous system tumors: results of a Spanish multicenter study
Publisher
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Clinical and Translational Oncology
Date
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2023
Subject
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Central Nervous System; child; Palliative Care; childhood cancer; article; controlled study; female; human; major clinical study; male; retrospective study; preschool child; palliative therapy; medulloblastoma; cancer patient; school child; multicenter study; surgery; communication disorder; motor dysfunction; opiate; sedation; central nervous system tumor; place of death; hospital mortality; dexamethasone; antiemetic agent; pontine glioma; asthenia; Central Nervous System Neoplasms
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Perez-Torres LM; Navarro-Marchena L; de Noriega I; Morey OM; Solano-Paez P; Rubio PE; Garrido CC; Garcia AM; Tallon GM; Huidobro LB; Portugal RR; Lopez IB; Lassaletta A; Morgenstern IA; Cruz MO; Valero AL; Llort SA; Gros SL; Marquez VC; Moreno L; Quiroga-Cantero E
Description
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Background: Brain tumors represent the most common cause of cancer-related death in children. Few studies concerning the palliative phase in children with brain tumors are available. Objective(s): (i) To describe the palliative phase in children with brain tumors; (ii) to determine whether the use of palliative sedation (PS) depends on the place of death, the age of the patient, or if they received specific palliative care (PC). Method(s): Retrospective multicenter study between 2010 and 2021, including children from one month to 18 years, who had died of a brain tumor. Result(s): 228 patients (59.2% male) from 10 Spanish institutions were included. Median age at diagnosis was 5 years (IQR 2-9) and median age at death was 7 years (IQR 4-11). The most frequent tumors were medulloblastoma (25.4%) and diffuse intrinsic pontine glioma (DIPG) (24.1%). Median number of antineoplastic regimens were 2 (range 0-5 regimens). During palliative phase, 52.2% of the patients were attended by PC teams, while 47.8% were cared exclusively by pediatric oncology teams. Most common concerns included motor deficit (93.4%) and asthenia (87.5%) and communication disorders (89.8%). Most frequently prescribed supportive drugs were antiemetics (83.6%), opioids (81.6%), and dexamethasone (78.5%). PS was administered to 48.7% patients. Most of them died in the hospital (85.6%), while patients who died at home required PS less frequently (14.4%) (p =.01). Conclusion(s): Children dying from CNS tumors have specific needs during palliative phase. The optimal indication of PS depended on the center experience although, in our series, it was also influenced by the place of death.Copyright © 2023, The Author(s), under exclusive licence to Federacion de Sociedades Espanolas de Oncologia (FESEO).
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<a href="http://doi.org/10.1007/s12094-023-03301-7" target="_blank" rel="noreferrer noopener">10.1007/s12094-023-03301-7</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).
2023
2023 SE3 - Oncology
antiemetic agent
Article
asthenia
Cancer Patient
Central Nervous System
Central Nervous System Neoplasms
Central Nervous System Tumor
Child
Childhood Cancer
Clinical and Translational Oncology
communication disorder
Controlled Study
Cruz MO
de Noriega Í
dexamethasone
Female
Garcia AM
Garrido CC
Gros SL
Hospital Mortality
Huidobro LB
Human
Lassaletta A
Llort SA
Lopez IB
Major Clinical Study
Male
Marquez VC
Medulloblastoma
Moreno L
Morey OM
Morgenstern IA
motor dysfunction
Multicenter Study
Navarro-Marchena L
Opiate
Palliative Care
Palliative Therapy
Perez-Torres LM
Place Of Death
pontine glioma
Portugal RR
Preschool Child
Quiroga-Cantero E
Retrospective Study
Rubio PE
School Child
Sedation
Solano-Paez P
Surgery
Tallon GM
Valero AL
-
Dublin Core
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1007/s00520-021-06412-5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00520-021-06412-5</a>
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Palliative Home-Based Care to Pediatric Cancer Patients: Characteristics and Healthcare Delivered
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Supportive Care in Cancer
Date
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2022
Subject
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Oncology
Creator
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de Noriega Í; García-Salido A; Martino R; Herrero B
Description
An account of the resource
OBJECTIVES: Cancer patients constitute an important group in pediatric palliative care. Though the patients' home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance. Our objective is to describe the characteristics of cancer patients and healthcare delivered by a pediatric palliative care unit with a home hospitalization program. METHODS: Retrospective study based on clinical records of deceased patients attended by the pediatric palliative care unit of Madrid over 10 years. Data collected included general characteristics, type of cancer, whether they received home assistance, place of death, healthcare delivered (hospitalizations, devices, oncological treatments…), and symptom prevalence. RESULTS: After excluding 47 patients, the clinical records of 144 patients were analyzed. The median age at referral was 9.4 years (IQR: 5.6-14.1), 61.2% were males; 44.2% had solid non-CNS tumors, 35.4% CNS tumors, and 20.4% hematological malignancies; 137 received home care with 89 not requiring further hospital admissions and 70.1% dying at home. The median follow-up time was 1.6 months (IQR: 0.5-2.9). The most used devices were venous ports (71.4%) and oxygen (49.4%); 53.5% of the patients received oncological support therapies. The most common symptoms were pain (91.8%) dyspnea (49.0%) and fatigue (46.9%). CONCLUSIONS: Home assistance was provided in a high number of patients, with a large proportion needing one or no hospital admissions and 70.1% of them dying at home. Further studies characterizing these patients and the factors which promote early access to palliative care are needed.
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<a href="http://doi.org/10.1007/s00520-021-06412-5" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06412-5</a>
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2021 Special Edition - Oncology
2022
de Noriega Í
García-Salido A
Herrero B
Martino R
Oncology
Supportive Care In Cancer
-
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Title
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/cncr.33830" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.33830</a>
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A Novel Combined Resilience and Advance Care Planning Intervention for Adolescents and Young Adults with Advanced Cancer: A Feasibility and Acceptability Cohort Study
Publisher
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Cancer
Date
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2021
Subject
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Oncology
Creator
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Fladeboe KM; O'Donnell MB; Barton KS; Bradford MC; Steineck A; Junkins CC; Yi-Frazier JP; Rosenberg AR
Description
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BACKGROUND: Few evidence-based psychosocial programs have been tested among adolescents and young adults (AYAs) with advanced cancer (AC), and early advance care planning (ACP) in this population is rare. The authors aimed to determine the feasibility and acceptability of 1) delivering an established resilience-coaching program, and 2) integrating ACP into that program, among AYAs with AC. METHODS: Eligible AYAs were 12 to 24 years old, diagnosed with advanced cancer (recurrent/refractory disease or a diagnosis associated with <50% survival) and fluent in English. The Promoting Resilience in Stress Management-Advanced Cancer (PRISM-AC) program included PRISM's standard sessions targeting stress-management, goal-setting, cognitive-restructuring, and meaning-making, delivered 1:1, 1 to 2 weeks apart, plus a new session involving elements of the AYA-specific Voicing My Choices ACP guide. Participants completed surveys at baseline and 12 weeks, and exit interviews following study completion. Feasibility was defined as ≥70% completion of 1) standard 4-session PRISM and 2) the new ACP session among those completing standard PRISM. Acceptability was defined qualitatively. Trajectories of patient-reported anxiety, depression, and hope were examined descriptively. RESULTS: Of 50 eligible, approached AYAs, 26 (52%) enrolled and completed baseline surveys. The AYAs had a mean age of 16 years (SD = 2.7 years), and the majority were male (73%) and White/Caucasian (62%). Twenty-two AYAs (85%) completed standard PRISM, and of those, 18 (82%) completed the ACP session. Feedback was highly positive; 100% and 91% described the overall and ACP programs as valuable, respectively. Anxiety, depression, and hope were unchanged after the program. CONCLUSIONS: Resilience coaching followed by integrated ACP is feasible and acceptable for AYAs with AC. Participating did not cause distress or decrease hope. LAY SUMMARY: Advance care planning (ACP) among adolescents and young adults (AYAs) with advanced cancer can be difficult to introduce. We investigated whether it is feasible and acceptable to integrate ACP into an existing resilience-coaching program for AYAs. In this cohort study of 26 AYAs with advanced cancer, we found the Promoting Resilience in Stress Management-Advanced Cancer program to be feasible (≥70% intervention-completion) and highly acceptable (positive post-participation feedback, no evidence of participant-distress). We conclude that an intervention integrating resilience coaching and ACP is feasible and acceptable among AYAs with advanced cancer.
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<a href="http://doi.org/10.1002/cncr.33830" target="_blank" rel="noreferrer noopener">10.1002/cncr.33830</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).
2021
2021 Special Edition - Oncology
Barton KS
Bradford MC
Cancer
Fladeboe KM
Junkins CC
O'Donnell MB
Oncology
Rosenberg AR
Steineck A
Yi-Frazier JP
-
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1007/s00520-021-06500-6" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00520-021-06500-6</a>
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Title
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Relationship of Race and Ethnicity on Access, Timing, and Disparities in Pediatric Palliative Care for Children with Cancer
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Supportive Care in Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Oncology
Creator
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DeGroote NP; Allen KE; Falk EE; Velozzi-Averhoff C; Wasilewski-Masker K; Johnson K; Brock KE
Description
An account of the resource
PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded PPO clinic where no formal consultation triggers exist. METHODS: Patients with cancer between 0 and 25 years at diagnosis who experienced a high-risk event between July 2015 and June 2018 were eligible. Demographic, disease, and PPC information were obtained. Descriptive statistics and logistic regression were used to assess likelihood of receiving PPC services by race/ethnicity. RESULTS: Of 426 patients who experienced a high-risk event, 48% were non-Hispanic White, 31% were non-Hispanic Black, 15% were Hispanic of any race, and 4% were non-Hispanic Asian. No significant differences were found between race/ethnicity and age at diagnosis/death, sex, and diagnosis. PPC consultation (p = 0.03) differed by race. Non-Hispanic Black patients were 1.7 times more likely than non-Hispanic White patients to receive PPC after adjustment (p = 0.01). White patients spent less days in the hospital in the last 90 days of life (3.0 days) compared with Black (8.0), Asian (12.5), or Hispanic patients (14.0, p = 0.009) CONCLUSION: Disparities exist in patients receiving pediatric oncology and PPC services. Cultural tendencies as well as unconscious and cultural biases may affect PPC referral by race and ethnicity. Better understanding of cultural tendencies and biases may improve end-of-life outcomes for children and young adults with cancer.
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<a href="http://doi.org/10.1007/s00520-021-06500-6" target="_blank" rel="noreferrer noopener">10.1007/s00520-021-06500-6</a>
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2021 Special Edition - Oncology
2022
Allen KE
Brock KE
DeGroote NP
Falk EE
Johnson K
Oncology
Supportive Care In Cancer
Velozzi-Averhoff C
Wasilewski-Masker K
-
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1002/cncr.33926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/cncr.33926</a>
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Locus-Of-Care Disparities in End-Of-Life Care Intensity among Adolescents and Young Adults with Cancer: A Population-Based Study Using the Impact Cohort
Publisher
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Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Oncology
Creator
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Coltin H; Rapoport A; Baxter NN; Nagamuthu C; Nathan PC; Pole JD; Momoli F; Gupta S
Description
An account of the resource
BACKGROUND: Adolescents and young adults (AYAs) with cancer may experience elevated rates of high-intensity end-of-life (HI-EOL) care. Locus-of-care (LOC) disparities (pediatric vs adult) in AYA end-of-life (EOL) care are unstudied. METHODS: A decedent population-based cohort of Ontario AYAs diagnosed between 1992 and 2012 at the ages of 15 to 21 years was linked to administrative data. The authors determined the prevalence and associations of a composite outcome of HI-EOL care that included any of the following: intravenous chemotherapy within 14 days of death, more than 1 emergency department visit, more than 1 hospitalization, or an intensive care unit (ICU) admission within 30 days of death. Secondary outcomes included measures of the most invasive EOL care (ventilation within 14 days of death and ICU death) and in-hospital death. RESULTS: There were 483 decedents: 60.5% experienced HI-EOL care, 20.3% were ventilated, and 22.8% died in the ICU. Compared with patients with solid tumors, patients with hematological malignancies had the greatest odds of HI-EOL care (odds ratio [OR], 2.3; 95% confidence interval [CI], 1.5-3.4), ventilation (OR, 4.7; 95% CI, 2.7-8.3), and ICU death (OR, 4.4; 95% CI, 2.6-4.4). Subjects treated in pediatric centers versus adult centers near death (OR, 2.4; 95% CI, 1.2-4.8) and those living in rural areas (OR, 2.1; 95% CI, 1.1-3.9) were more likely to experience ICU death. CONCLUSIONS: AYAs with cancer experience high rates of HI-EOL care, with patients in pediatric centers and those living in rural areas having the highest odds of ICU death. This study is the first to identify LOC-based disparities in EOL care for AYAs, and it highlights the need to explore the mechanisms underlying these disparities.
Identifier
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<a href="http://doi.org/10.1002/cncr.33926" target="_blank" rel="noreferrer noopener">10.1002/cncr.33926</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).
2021 Special Edition - Oncology
2022
Baxter NN
Cancer
Coltin H
Gupta S
Momoli F
Nagamuthu C
Nathan PC
Oncology
Pole JD
Rapoport A
-
Dublin Core
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2021 Special Edition 2 - Oncology
Text
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Citation List Month
2021 Special Edition - Oncology
URL Address
<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/09699260.2021.1898077</a>
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Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study
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Progress in Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Oncology
Creator
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Cho E; Gilmer MJ; Friedman DL; Hendricks-Ferguson VL; Hinds PS; Akard TF
Description
An account of the resource
Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.
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<a href="http://doi.org/10.1080/09699260.2021.1898077" target="_blank" rel="noreferrer noopener">10.1080/09699260.2021.1898077</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).
2021
2021 Special Edition - Oncology
Akard TF
Cho E
Friedman DL
Gilmer MJ
Hendricks-Ferguson VL
Hinds PS
Oncology
Progress In Palliative Care