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Text
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Citation List Month
April 2016 List
URL Address
<a href="http://adc.bmj.com/content/101/10/984.long" target="_blank" rel="noreferrer">http://adc.bmj.com/content/101/10/984.long</a>
Dublin Core
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Title
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The Importance Of Early Involvement Of Paediatric Palliative Care For Patients With Severe Congenital Heart Disease.
Publisher
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Archives Of Disease In Childhood
Date
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2016
Subject
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Cardiology; Palliative Care; Advance Care Planning; Congenital Heart Disease; End-of-life Care
Creator
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S Bertaud; Lloyd DF; Laddie J; Razavi R
Description
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Growing numbers of patients with severe congenital heart disease (CHD) are surviving into late childhood and beyond. This increasingly complex patient group may experience multiple formidable and precarious interventions, lifelong morbidity and the very real risk of premature death on many occasions throughout their childhood. In this paper, we discuss the advantages of a fully integrated palliative care ethos in patients with CHD, offering the potential for improved symptom control, more informed decision-making and enhanced support for patients and their families throughout their disease trajectory. These core principles may be delivered alongside expert cardiac care via non-specialists within pre-existing networks or via specialists in paediatric palliative care when appropriate. By broaching these complex issues early-even from the point of diagnosis-an individualised set of values can be established around not just end-of-life but also quality-of-life decisions, with clear benefits for patients and their families regardless of outcome.
Identifier
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DOI: <a href="https://doi.org/10.1136/archdischild-2015-309789" target="_blank" rel="noreferrer">10.1136/archdischild-2015-309789</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).
2016
Advance Care Planning
April 2016 List
Archives of Disease in Childhood
Cardiology
Congenital Heart Disease
End-of-life Care
Laddie J
Lloyd DF
Palliative Care
Razavi R
S Bertaud
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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
September 2016 List
Dublin Core
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Title
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Trainee Experience And Understanding In Paediatric Palliative Care
Publisher
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Archives Of Disease In Childhood
Date
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2016
Creator
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A Hutchinson; S Bertaud
Description
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Aims Despite the growing number of children within the UK who suffer life-limiting or life-threatening conditions, there remain significant barriers to the timely integration of palliative care services for many patients. We sought to evaluate trainee understanding of what these services can offer, and their experiences of palliative care in their day-to-day clinical practice.
Methods An online survey was distributed to paediatric trainees across the UK. We analysed the responses using simple statistical methods as well as performing a qualitative analysis on free text responses.
Results 161 trainees completed the survey, of which 94% reported working with children who suffer life-limiting or life-threatening conditions. A significant proportion of trainees reported being unaware of some of the key roles of palliative care teams, such as supporting children who may later recover and be discharged from palliative care (Table 1). In addition, trainees report palliative care teams being poorly integrated within certain paediatric sub-specialty areas (Figure 1).
Abstract G512(P) Table 1
Abstract G512(P) Table 1
Trainee awareness of paediatric care services
Abstract G512(P) Figure 1
Abstract G512(P) Figure 1
Paediatric palliative care team involvement in sub-specialties
Whilst 98% of trainees reported they would involve palliative care if a child was expected to die soon, fewer acknowledged the need to refer children for whom curative treatment may be feasible but could fail (42%), or before the birth of a child with a fetal diagnosis of a life-threatening or life-limiting condition (65%). 63% of trainees reported being involved in the care of a child where they felt that quality-of-life priorities or the possibility of death were not being openly acknowledged or discussed.
Lack of knowledge about the services available, and concerns about parental perception of palliative care emerged as key barriers to making referrals. 93% of trainees said they would find it helpful to have more training in paediatric palliative care, either from local visits or more specific training.
Conclusion UK paediatric trainees report being unaware of the full remit of palliative care teams, and many describe experiences where these services are difficult to access in their clinical practice. This survey provides an insight into the perceived barriers to better integration of paediatric palliative care, and highlights an area in which both clinicians and their patients may benefit from more dedicated resources and training.
Identifier
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http://dx.doi.org/10.1136/archdischild-2016-310863.499
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).
2016
A Hutchinson
Archives of Disease in Childhood
S Bertaud
September 2016 List