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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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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/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12887-018-1021-2</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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Patterns of paediatric end-of-life care: A chart review across different care settings in Switzerland
Publisher
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BMC Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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terminal care; human; child; female; male; cohort analysis; neurology; newborn; article; neonatology; home care; major clinical study; retrospective study; child care; Switzerland; oncology; resuscitation; medical record review; child death; life sustaining treatment; treatment withdrawal; health care utilization; hospital admission; 103-90-2 (paracetamol); paracetamol; adolescent; infant; intensive care unit; cause of death; length of stay; drug use; cardiology; community care; invasive procedure; narcotic analgesic agent
Creator
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Zimmermann K; Cignacco E; Engberg S; Ramelet AS; von der Weid N; Eskola K; Bergstraesser E; Ansari M; Aebi C; Baer R; Popovic MB; Bernet V; Brazzola P; Bucher HU; Buder R; Cagnazzo S; Dinten B; Dorsaz A; Elmer F; Enriquez R; Fahrni-Nater P; Finkbeiner G; Frey B; Frey U; Greiner J; Hassink RI; Keller S; Kretschmar O; Kroell J; Laubscher B; Leibundgut K; Malaer R; Meyer A; Stuessi C; Nelle M; Neuhaus T; Niggli F; Perrenoud G; Pfammatter JP; Plecko B; Rupf D; Sennhauser F; Stade C; Steinlin M; Stoffel L; Thomas K; Vonarburg C; von Vigier R; Wagner B; Wieland J; Wernz B
Description
An account of the resource
Background: Paediatric end-of-life care is challenging and requires a high level of professional expertise. It is important that healthcare teams have a thorough understanding of paediatric subspecialties and related knowledge of disease-specific aspects of paediatric end-of-life care. The aim of this study was to comprehensively describe, explore and compare current practices in paediatric end-of-life care in four distinct diagnostic groups across healthcare settings including all relevant levels of healthcare providers in Switzerland. Methods: In this nationwide retrospective chart review study, data from paediatric patients who died in the years 2011 or 2012 due to a cardiac, neurological or oncological condition, or during the neonatal period were collected in 13 hospitals, two long-term institutions and 10 community-based healthcare service providers throughout Switzerland. Results: Ninety-three (62%) of the 149 reviewed patients died in intensive care units, 78 (84%) of them following withdrawal of life-sustaining treatment. Reliance on invasive medical interventions was prevalent, and the use of medication was high, with a median count of 12 different drugs during the last week of life. Patients experienced an average number of 6.42 symptoms. The prevalence of various types of symptoms differed significantly among the four diagnostic groups. Overall, our study patients stayed in the hospital for a median of six days during their last four weeks of life. Seventy-two patients (48%) stayed at home for at least one day and only half of those received community-based healthcare. Conclusions: The study provides a wide-ranging overview of current end-of-life care practices in a real-life setting of different healthcare providers. The inclusion of patients with all major diagnoses leading to disease- and prematurity-related childhood deaths, as well as comparisons across the diagnostic groups, provides additional insight and understanding for healthcare professionals. The provision of specialised palliative and end-of-life care services in Switzerland, including the capacity of community healthcare services, need to be expanded to meet the specific needs of seriously ill children and their families.
Identifier
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<a href="http://doi.org/10.1186/s12887-018-1021-2" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1021-2</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.
103-90-2 (paracetamol)
2018
Adolescent
Aebi C
Ansari M
Article
Baer R
Bergstraesser E
Bernet V
Bmc Pediatrics
Brazzola P
Bucher HU
Buder R
Cagnazzo S
Cardiology
Cause Of Death
Child
Child Care
Child Death
Cignacco E
Cohort Analysis
community care
Dinten B
Dorsaz A
Drug Use
Elmer F
Engberg S
Enriquez R
Eskola K
Fahrni-Nater P
Female
Finkbeiner G
Frey B
Frey U
Greiner J
Hassink RI
Health Care Utilization
Home Care
Hospital Admission
Human
Infant
Intensive Care Unit
invasive procedure
Keller S
Kretschmar O
Kroell J
Laubscher B
Leibundgut K
Length Of Stay
Life Sustaining Treatment
Major Clinical Study
Malaer R
Male
Medical Record Review
Meyer A
narcotic analgesic agent
Nelle M
Neonatology
Neuhaus T
Neurology
Newborn
Niggli F
October 2018 List
Oncology
Paracetamol
Perrenoud G
Pfammatter JP
Plecko B
Popovic MB
Ramelet AS
Resuscitation
Retrospective Study
Rupf D
Sennhauser F
September 2018 List
Stade C
Steinlin M
Stoffel L
Stuessi C
Switzerland
Terminal Care
Thomas K
Treatment Withdrawal
Von der Weid N
von Vigier R
Vonarburg C
Wagner B
Wernz B
Wieland J
Zimmermann 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
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/10.1111/jan.13304" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/jan.13304</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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Maintaining family life balance while facing a child's imminent death-A mixed methods study
Publisher
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Journal of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Humans; Parents/psychology; Parents/px [Psychology]; Family; Child; Female; Male; Surveys and Questionnaires; Terminal Care
Creator
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Eskola K; Bergstraesser E; Zimmermann K; Cignacco E
Description
An account of the resource
AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family. Parents have specific needs, especially when they care for a dying child at home. DESIGN: Concurrent embedded mixed methods design. METHODS: This sub-study of the nationwide survey, 'Paediatric End-of-Life Care Needs in Switzerland' (2012-2015) included 47 children who received EOL care at home from 2011-2012. We extracted quantitative data from patients' medical charts and obtained information via parental questionnaire and then compared parents whose child died at home or in hospital by computing generalized estimation equations. We thematically analysed interviews with parents who provided EOL care at home. RESULTS: Parents created an intimate lifeworld and a sense of normality for the child at home. They constantly balanced the family's lifeworld with the requirements and challenges posed by the outside world. This work exhausted parents. Parental 'readiness' and social support drove EOL care for children at home. Parents needed practical help with housekeeping and had negative experiences when dealing with insurance. In only 34.8% of cases was a child's EOL home care supported by paediatric palliative care team. CONCLUSION: Paediatric end-of-life care at home is only feasible if parents make extraordinary efforts. If family-centred end-of-life home care is provided by a hospital-based paediatric palliative home care team, which includes paid housekeeping help and psychological support, parents' needs could be better met.
Identifier
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<a href="http://doi.org/10.1111/jan.13304" target="_blank" rel="noreferrer noopener">10.1111/jan.13304</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
August 2018 List
Bergstraesser E
Child
Cignacco E
Eskola K
Family
Female
Humans
Journal Of Advanced Nursing
Male
Parents/psychology
Parents/px [psychology]
Surveys And Questionnaires
Terminal Care
Zimmermann K
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1186/s12904-016-0098-3" target="_blank" rel="noreferrer">http://doi.org/10.1186/s12904-016-0098-3</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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When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care
Publisher
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Bmc Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
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Zimmermann K; Bergstraesser E; Engberg S; Ramelet Anne-Sylvie; Marfurt-Russenberger K; Von der Weid N; Grandjean C; Fahrni-Nater P; Cignacco E; PELICAN Consortium
Description
An account of the resource
BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the heterogeneity within the medical field of paediatrics, and fit into the local health care system. We need to better understand the perspectives of parents facing the death of their child in order to guide further development and evaluation of specialised paediatric palliative and end-of-life (EOL) care services. METHODS: Questionnaire survey to assess the EOL care perspectives of a Swiss population-based sample of bereaved parents who had lost a child due to a cardiac, neurological or oncological condition, or during the neonatal period in the years 2011 or 2012. The parental perspective was assessed with a newly developed and tested instrument that was structured according to six evidence-based quality domains. Responses regarding parental experiences and perceived satisfaction are described. Differences between the four diagnostic groups are analysed using a generalized estimation equation to account for the dyadic data structure. RESULTS: Of 307 eligible families, 267 could be contacted and 135 (51%) consented to participate in this questionnaire survey. Our findings show positive parental experiences of their child's EOL care and high perceived satisfaction with the care their child received. Parents of a child with cancer rated their experiences highest in most of the six quality domains and reported the highest satisfaction with care. The lowest scores were mainly reported by parents from the neurology group, with the exception of the shared decision making domain, where parents of neonates reported significantly less positive experiences. CONCLUSIONS: Although positive in general, our study results suggest some areas for improvement. The integration of specialised paediatric palliative care has the potential to minimise lost opportunities to support and assist parents.
2016
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-016-0098-3" target="_blank" rel="noreferrer">10.1186/s12904-016-0098-3</a>
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).
Type
The nature or genre of the resource
Journal Article
2016
Backlog
Bergstraesser E
BMC Palliative Care
Cignacco E
Engberg S
Fahrni-Nater P
Grandjean C
Journal Article
Marfurt-Russenberger K
PELICAN Consortium
Ramelet Anne-Sylvie
Von der Weid N
Zimmermann K
-
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 2017 List
Notes
<p>Bergstrasser, Eva<br />Cignacco, Eva<br />Luck, Patricia<br />Journal Article<br />United States<br />Palliat Care. 2017 Aug 10;10:1178224217724770. doi: 10.1177/1178224217724770. eCollection 2017.</p>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Health Care Professionals' Experiences And Needs When Delivering End-of-life Care To Children: A Qualitative Study
Publisher
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Palliat Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Conflicts Of Interest With Respect To The Research Authorship And/or; Pediatric End-of-life Care; Perspectives Of Health Care Professionals; Professionals' Experiences; Professionals' Needs; Publication Of This Article.
Creator
An entity primarily responsible for making the resource
Bergstraesser E; Cignacco E; Luck P
Description
An account of the resource
Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations. A major need was the expansion of vocational training and support by specialized palliative care teams. We recommend the development of a national concept for the provision of EOL care in children, accompanied by training programs and supported by specialized pediatric palliative care teams located in tertiary children's hospitals.
Identifier
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10.1177/1178224217724770
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).
2017
Bergstraesser E
Cignacco E
Conflicts Of Interest With Respect To The Research Authorship And/or
Luck P
October 2017 List
Palliat Care
Pediatric End-of-life Care
Perspectives Of Health Care Professionals
Professionals' Experiences
Professionals' Needs
Publication Of This Article.