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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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January 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
January 2018 List
URL Address
<a href="http://doi.org/10.1007/s00431-012-1880-8" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00431-012-1880-8</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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The needs of professionals in the palliative care of children and adolescents
Publisher
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European Journal Of Pediatrics
Date
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2013
Subject
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Adolescent Health Services/ma [Manpower]; Child Care/ma [Manpower]; Health Services Needs and Demand; Palliative Care/ma [Manpower]; adolescent; Child; Humans; Qualitative Research; Surveys and Questionnaires; Switzerland
Creator
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Bergstraesser E; Inglin S; Abbruzzese R; Marfurt-Russenberger K; Hosek M; Hornung R
Description
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UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of Competence for Pediatric Palliative Care (PPC) in Switzerland. Within two parts of the study, 76 HCPs were interviewed. The main interview topics were: (1) definition of and attitude toward PPC; (2) current provision of PPC; (3) the support needs of HCPs in the provision of PPC; and (4) the role of specialized PPC teams. HCPs expressed openness to PPC and reported distinctive needs for support in the care of these patients. The main tasks of specialized PPC teams in Switzerland would encompass the coaching of attending teams, coordination of care, symptom control, and direct support of affected families during and beyond the illness of their child. CONCLUSION: This study indicates the need for specialized PPC in Switzerland both inside and outside of centers providing top quality medical care (Spitzenmedizin). Specialized PPC teams could have a significant impact on the care of children and families with PPC needs. Whether hospices are an option in Switzerland remains unanswered; however, a place to meet other families with similar destinies was emphasized.
Identifier
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<a href="http://doi.org/10.1007/s00431-012-1880-8" target="_blank" rel="noreferrer">10.1007/s00431-012-1880-8</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).
2013
Abbruzzese R
Adolescent
Adolescent Health Services/ma [Manpower]
Bergstraesser E
Child
Child Care/ma [Manpower]
European Journal of Pediatrics
Health Services Needs And Demand
Hornung R
Hosek M
Humans
Inglin S
January 2018 List
Marfurt-Russenberger K
Palliative Care/ma [manpower]
Qualitative Research
Surveys And Questionnaires
Switzerland
-
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
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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
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<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
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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