1
40
6
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Dublin Core
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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>
Dublin Core
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Title
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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
Publisher
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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
Creator
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Hammer NM; Hansson H; Pedersen LH; Abitz M; Sjøgren P; Schmiegelow K; Bidstrup PE; Larsen HB; Olsen M
Description
An account of the resource
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
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March 2023 List
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
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 List 2023
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.139" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jpainsymman.2022.12.139</a>
Dublin Core
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Title
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Home-Based Specialized Pediatric Palliative Care: A Systematic Review and Meta-Analysis
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Home Care Services; Palliative Care; Pediatric; Place of Death; Quality of Life; Symptom Management
Creator
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Hammer NM; Bidstrup PE; Brok J; Devantier M; Sjøgren P; Schmiegelow K; Larsen A; Kurita GP; Olsen M; Larsen HB
Description
An account of the resource
CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements. We included studies that reported on place of death, quality of life and/or symptoms. Two authors independently screened the articles, extracted data, and assessed quality. Results were synthesized as a systematic narrative synthesis and meta-analysis, using a random-effects model. RESULTS: We included five studies, which reported on 392 children and adolescents. Meta-analysis showed that receiving home-based SPPC was associated with a more than fourfold increased likelihood of home death (risk ratio 4.64, 95% confidence interval 3.06-7.04; 3 studies; n=296). Most studies reported improved quality of life and reduced symptom burden. The included studies were of low to moderate quality with a high risk of bias. CONCLUSION: This systematic review suggests that home-based SPPC is associated with increased likelihood of home death, and might be associated with improved quality of life and reduced symptom burden. The small number of studies and an overall high risk of bias, however, makes the overall strength of evidence low.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.139" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.139</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
Bidstrup PE
Brok J
Devantier M
Hammer NM
home care services
Journal of Pain and Symptom Management
Kurita GP
Larsen A
Larsen HB
March List 2023
Olsen M
Palliative Care
Pediatric
Place Of Death
Quality Of Life
Schmiegelow K
Sjøgren P
Symptom Management
-
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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May 2021 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
May 2021 List
URL Address
<a href="http://doi.org/10.1136/bmjspcare-2021-002891" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/bmjspcare-2021-002891</a>
Dublin Core
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Title
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Paediatric end-of-life care - symptoms and problems: parent assessment
Publisher
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BMJ Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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children; end-of-life care; paediatric; parent assessment; symptom experiences and/or burden
Creator
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Lykke C; Ekholm O; Olsen M; Sjogren P
Description
An account of the resource
OBJECTIVE: Symptoms and problems (S&P) are under-reported in children in end-of-life care.To target future interventions, the primary aim was to examine S&P in children in end-of-life care. METHOD(S): All parents, who lost a child under the age of 18 years due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire in 2017. In all, 152 (38%) children were represented by 136 mothers and 57 fathers. In the present study, parents' assessments of S&P during the last month of life were restricted to children aged 3-18 years. Data were analyses by means of descriptive statistics. RESULT(S): Children >=3 years at the time of death were represented by 71 parents (48 mothers and 23 fathers) representing 56 out of the 152 children. Physical fatigue (93%), sleepiness (90%), poor appetite (87%), pain (84%) and nausea (84%) were the five most frequent symptoms reported by the parents. In all, 65% of the parents reported that satisfactory pain relief was obtained and 64% of the parents reported that the healthcare services to a large extent reacted quickly, when the child and/or family needed help. However, 46% of the parents experienced 'mess-ups' or sloppy services in the primary ward and 27% experienced that the children suffered from fear of death. CONCLUSION(S): According to the parents, children with life-limiting diagnosis are highly symptomatic and have substantial problems during end-of-life care. Our findings indicate that systematic screening of S&P in children should be considered. Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2021-002891" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-002891</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
BMJ Supportive & Palliative Care
Children
Ekholm O
End-of-life Care
Lykke C
May 2021 List
Olsen M
Paediatric
parent assessment
Sjogren P
symptom experiences and/or burden
-
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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November 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
November 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14331</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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All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Publisher
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Acta Paediatrica, International Journal of Paediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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all cause mortality;childhood mortality;death;home;accident;adolescent;adult;article;automutilation;Epidemiology;Child;chromosome aberration;Epidemiology;congenital malformation;Epidemiology;Denmark;human;infant;infant mortality;International Classification of Diseases;neoplasm;Epidemiology;perinatal death;priority journal
Creator
An entity primarily responsible for making the resource
Lykke C;Ekholm O;Schmiegelow K;Olsen M;Sjogren P
Description
An account of the resource
Aim: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. Methods: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Identifier
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<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
accident
Acta Paediatrica, International Journal of Paediatrics
Adolescent
Adult
all cause mortality
Article
automutilation
Child
Childhood Mortality
Chromosome Aberration
Congenital Malformation
Death
Denmark
Ekholm O
Epidemiology
Home
Human
Infant
Infant Mortality
International Classification of Diseases
Lykke C
Neoplasm
November 2018 List
Olsen M
Perinatal Death
Priority Journal
Schmiegelow K
Sjogren 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
September 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
October 2018 List
URL Address
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14331</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
All cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
An entity primarily responsible for making the resource
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjagren P
Description
An account of the resource
Aim Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994–2014. Methods We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results The all‐cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion All‐cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</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.
2018
Acta Paediatrica
Ekholm O
Lykke C
October 2018 List
Olsen M
Schmiegelow K
September 2018 List
Sjagren 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
August 2018 List
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).
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
August 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</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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Parents' perspectives on losing a child due to life-limiting diagnoses: A population-based 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
2018
Subject
The topic of the resource
human; child; female; male; diagnosis; Denmark; palliative therapy; distress syndrome; adult; major clinical study; conference abstract; young adult; quality of life; Wales; malignant neoplasm; questionnaire; cause of death; directory
Creator
An entity primarily responsible for making the resource
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjogren P
Description
An account of the resource
Background: Approximately, 300 children die in Denmark every year. In order to support future implementation of specialized pediatric palliative care the aim of this study was to investigate the needs, quality of life and severity of distress of parents who lost a child with life-limiting diagnoses. Method: A register-based study identified causes of death in children 0-18 years who died in the period 2012-2014 in Denmark. Potential palliative diagnoses were identified through a "Directory" elaborated in Wales1. Children who died the first day of life were excluded. A selfadministered questionnaire was used to assess severity of distress, needs and quality of life of parents to deceased children. We used a modified version of the questionnaire "To lose a child"2. Results: In total, 951 children died. Out of these 409 children were identified with life-limiting diagnoses. Of these 83 children (20%) died the first day of life. Thus, parents of 326 children were invited to participate and received a questionnaire. The response-rate was 41% and it ranged from 48% among parents of children with cancer to 20% among parents of children with circulatory diagnoses. Parents who lost their child >32 days after birth were more likely to participate (43%). Conclusion: We have received a unique material about parents' perspectives on losing a child with life-limiting diagnoses. The relatively low response-rate was expected due to the sensitive nature of the questionnaire; however, future planning of specialized pediatric palliative care in Denmark can be enriched by the parents' perspectives.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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).
2018
Adult
August 2018 List
Cause Of Death
Child
conference abstract
Denmark
Diagnosis
directory
Distress Syndrome
Ekholm O
Female
Human
Lykke C
Major Clinical Study
Male
Malignant Neoplasm
Olsen M
Palliative Medicine
Palliative Therapy
Quality Of Life
Questionnaire
Schmiegelow K
Sjogren P
Wales
Young Adult