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40
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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 2017 List
Notes
<p>1651-2227<br />Lazzarin, P<br />Schiavon, B<br />Brugnaro, L<br />Benini, F<br />Journal Article<br />Norway<br />Acta Paediatr. 2017 Sep 25. doi: 10.1111/apa.14098.</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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Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
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Carers; Home-based Care; Life-limiting Diseases; Paediatric Palliative Care; Parents
Creator
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Lazzarin P; Schiavon B; Brugnaro L; Benini F
Description
An account of the resource
AIM: This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. METHODS: The study population consisted of 33 families with a child under the responsibility of the Veneto Regional Center for Pediatric Palliative Care, northern Italy, who needed medical support in at least two of the following areas: respiratory, feeding, pain and seizures. RESULTS: The children had a mean age of 6.8 +/-4.7 years. We found that 72% of the patients needed medical devices for feeding, 36% had a tracheostomy and 55% were on mechanical ventilatory support. The children needed an average of five different life-supporting medical appliances and the time taken to provide for their care increased significantly with each additional appliance (p=0.016). Their most time-consuming daily needs were feeding (174 minutes) and support when they woke up at night (67 minutes). The average daily time that parents spent taking care of their child amounted to eight hours and 54 minutes per day. CONCLUSION: Parents providing palliative care for children with life-limiting diseases spent an average of nine hours a day caring for them each day and had to maintain an average of five medical appliances. This article is protected by copyright. All rights reserved.
Identifier
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10.1111/apa.14098
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
Acta Paediatrica
Benini F
Brugnaro L
Carers
Home-based Care
Lazzarin P
Life-limiting Diseases
November 2017 List
paediatric palliative care
Parents
Schiavon B
-
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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July 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
July 2018 List
URL Address
<a href="http://doi.org/10.1055/s-0037-1605369" target="_blank" rel="noreferrer noopener">http://doi.org/10.1055/s-0037-1605369</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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Impact of the Regional Pediatric Palliative Care Network on the Care of Children on Long-Term Ventilation: Could the Availability of a Residential Solution into the Network Reduce the Duration of Intensive Care Unit Staying for These Patients?
Publisher
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Journal of Pediatric Intensive Care
Date
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2018
Creator
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Rusalen F; Agosto C; Brugnaro L; Benini F
Identifier
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<a href="http://doi.org/10.1055/s-0037-1605369" target="_blank" rel="noreferrer noopener">10.1055/s-0037-1605369</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).
Description
An account of the resource
The prevalence of children on long-term ventilation (LTV) at home has increased in many countries. In Italy, there are 4.3/100,000 population younger than 18 years. Pediatric palliative care (PPC) network provides high-level care for these patients. In December 2003, in the northeast region of Italy, the regional authority promoted and developed a regional network for PPC, a regional network dedicated to the management of pediatric patients with life-limiting and life-threatening diseases. Characterization of LTV children population and description of care offered to them by a regional PPC network, based on the experience of the Veneto region were collected in a regional database. The regional database and evaluation of families' satisfaction, by means of a questionnaire, were longitudinally analyzed. We studied 56 children on LTV. The main involved diseases were neuromuscular diseases and myopathy. All patients had major comorbidities. Mean age was 4.5 years. The median age of starting ventilation was 3.9 years. The initial type of ventilation was invasive mechanical ventilation in 31 patients and noninvasive ventilation in 25 of them. The overall average frequency of hospitalizations for acute episodes was 0.7 admissions per year and the median duration of staying was 6 days. The median duration of staying in the intensive care unit (ICU) was significantly reduced after the opening of a residential solution (the pediatric hospice) (5 vs. 39 days). PPC network can offer global care to children on LTV. The availability of a residential structure into the PPC network seems to reduce the number and duration of hospital stays, especially in ICU, of this population, with likely cost savings. Further studies are necessary to confirm this hypothesis.
2018
Agosto C
Benini F
Brugnaro L
Home
Hospice
Intensive Care
Journal of Pediatric Intensive Care
July 2018 List
life-limiting disease
long-term ventilation
Mechanical Ventilation
Outcomes
Pediatric Palliative Care
Pediatrics
Rusalen F
-
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
June 2017 List
URL Address
http://www.ncbi.nlm.nih.gov/pubmed/28135759
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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Regional Paediatric Palliative Care Network Model Improves The Quality Of Life Of Children On Long-term Ventilation At Home
Publisher
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Acta Paediatrica
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Creator
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Rusalen F; Agosto C; Brugnaro L; Benini F
Description
An account of the resource
In the last 20 years, the prevalence of children on domiciliary long-term ventilation (LTV) has increased in many countries, and in Italy it is now 4.3 of the 100 000. The complex management of these patients’ conditions requires highly specialised expertise that is provided by integrated multidisciplinary teams and calls for solutions from a number of institutional agencies. The global care offered to these patients by paediatric palliative care (PPC) also embraces their social needs. We present a retrospective cross-sectional analysis of the regional database of the Veneto Regional Center for PPC in north-east Italy, which organises, coordinates and supports the PCC network for the region. It guarantees 24-hours-a-day assistance by a multidisciplinary team that responds to the clinical, psychological, organisational, social and spiritual needs of the child and family.
Identifier
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10.1111/apa.13769
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
Acta Paediatrica
Agosto C
Benini F
Brugnaro L
June 2017 List
Rusalen F