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40
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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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March 2018 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 2018 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Paediatric palliative care in Denmark should be strengthened
Publisher
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Ugeskrift For Laeger
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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standards; adolescent; Child; complication; Denmark; Family; Human; infant; neoplasm/ep [Epidemiology]; neoplasm/th [Therapy]; Palliative therapy; Patient Care; preschool child
Creator
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Jespersen BA; Clausen N; Sjogren P
Description
An account of the resource
Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the age of 16 years died in Denmark. Of these, 195 were less than one year old. Most children and their families may prefer death at home if possible. Early planning allows for better integration of home-care services and ensures that death occurs at the place that is best for the child and family.
2014
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
Child
Clausen N
Complication
Denmark
Family
Human
Infant
Jespersen BA
March 2018 List
neoplasm/ep [Epidemiology]
neoplasm/th [Therapy]
Palliative Therapy
Patient Care
Preschool Child
Sjogren P
Standards
Ugeskrift For Laeger
-
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
2018 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
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Oncology 2018 List
URL Address
<a href="http://doi.org/10.1080/23294515.2016.1234519" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1080/23294515.2016.1234519</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Decision making in pediatric oncology: Views of parents and physicians in two European countries
Publisher
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AJOB empirical bioethics
Date
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2017
Subject
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quality of life; Switzerland; doctor patient relation; parent; interpersonal communication; oncology; physician; oncologist; child parent relation; pediatrics; human; female; male; adult; qualitative research; middle aged; decision making; Romania; neoplasm/th [Therapy]; patient participation; clinical protocol
Creator
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Badarau DO; Ruhe K; Kuhne T; De CE; Colita A; Elger BS; Wangmo T
Description
An account of the resource
BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options., METHODS: This qualitative interview study explored decision-making processes for children with cancer at different stages in their treatment in Switzerland and Romania., RESULTS: Thematic analysis of interviews conducted with parents and oncologists identified decision making as a heterogeneous process in both countries. Various decisions were made based on availability and reasonableness of care options. In most cases, at the time of diagnosis, parents were confronted with a "choiceless choice"-that is, there was only one viable option (a standard protocol), and physicians took the lead in making decisions significant for health outcomes. Parents' and sometimes children's role increased during treatment when they had to make decisions regarding research participation and aggressive therapy or palliative care. Framing these results within the previously described Decisional Priority in Pediatric Oncology Model (DPM) highlights family's more prominent position when making elective decisions regarding quality-of-life or medical procedures, which had little effect on health outcomes. The interdependency between oncologists, parents, and children is always present. Communication, sharing of information, and engaging in discussions about preferences, values, and ultimately care goals should be decision making's foundation., CONCLUSIONS: Patient participation in these processes was reported as sometimes limited, but parents and oncologists should continue to probe patients' abilities and desire to be involved in decision making. Future research should expand the DPM and explore how decisional priority and authority can be shared by oncologists with parents and even patients.
Identifier
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<a href="http://doi.org/%2010.1080/23294515.2016.1234519" target="_blank" rel="noreferrer noopener">10.1080/23294515.2016.1234519</a>
2017
Adult
AJOB empirical bioethics
Badarau DO
Child Parent Relation
clinical protocol
Colita A
De CE
Decision Making
Doctor Patient Relation
Elger BS
Female
Human
Interpersonal Communication
Kuhne T
Male
Middle Aged
neoplasm/th [Therapy]
Oncologist
Oncology
Oncology 2018 List
Parent
Patient Participation
Pediatrics
Physician
Qualitative Research
Quality Of Life
Romania
Ruhe K
Switzerland
Wangmo T
-
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/10.1001/jamanetworkopen.2023.13503" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1001/jamanetworkopen.2023.13503</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Parent Priorities in End-of-Life Care for Children With Cancer
Publisher
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JAMA Network Open
Date
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2023
Subject
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child; Terminal Care; terminal care; female; human; death; child parent relation; psychology; cross-sectional study; middle aged; neoplasm/th [Therapy]; Bayes theorem
Creator
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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
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<a href="http://doi.org/10.1001/jamanetworkopen.2023.13503" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.13503</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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