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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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February 2019 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
February 2019 List
URL Address
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1111/jan.13811</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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Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services
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
2018
Subject
The topic of the resource
social support; qualitative analysis; palliative therapy; major clinical study; sibling; non profit organization; skill; joint; human; article; child; female; male; controlled study; adult; interview; total quality management; transition to adult care; learning; social media; adult child; secondary analysis; dilution; facilitation; social isolation
Creator
An entity primarily responsible for making the resource
Noyes J; Pritchard S; Pritchard A; Bennett V; Rees S
Description
An account of the resource
AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener">10.1111/jan.13811</a>
2018
Adult
Adult Child
Article
Bennett V
Child
Controlled Study
dilution
facilitation
February 2019 List
Female
Human
Interview
joint
Journal Of Advanced Nursing
Learning
Major Clinical Study
Male
Non Profit Organization
Noyes J
Palliative Therapy
Pritchard A
Pritchard S
Qualitative Analysis
Rees S
Secondary Analysis
Sibling
Skill
Social Isolation
social media
Social Support
Total Quality Management
Transition To Adult Care
-
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
June 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
June 2018 List
URL Address
<a href="http://doi.org/10.1136/archdischild-2018-rcpch.488" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2018-rcpch.488</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
Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)
Publisher
An entity responsible for making the resource available
Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
medical care; adult; Canada; Canadian; child; complication; conference abstract; conversation; death; disability; female; human; joint; law; major clinical study; male; morbidity; palliative therapy; pediatrician; public figure; public health; rare disease; young adult
Creator
An entity primarily responsible for making the resource
Moore-Hepburn C
Description
An account of the resource
Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are 'reasonably foreseeable'. Minor patients (both mature and 'never competent' minors) are currently excluded from the legislation. An independent review of the issue of minor patients and MAID was requested by Parliament. As health professionals, politicians and the public grappled with this issue, never before formally contemplated in Canada, the Canadian Paediatric Surveillance Program (CPSP) sough to provide data on exploratory conversations and explicit requests for MAID from/for minor patients to inform the independent review. Methods The CPSP is a joint program of the Public Health Agency of Canada and the Canadian Paediatric Society. The program conducts national surveillance into diseases that are high in disability, morbidity and economic costs to society, despite their low frequency. The CPSP surveys over 2500 paediatricians and paediatric subspecialists each month to monitor rare diseases, conditions and complications in Canadian children. A one-time survey was sent to all CPSP participants in May 2016. The survey tool can be accessed at www.cpsp.cps.ca/surveillance. Results The survey response rate was 40%. Over one-third of participants reported they provide end-of-life or palliative care (370; 35%). Exploratory discussions with minor patients about MAID were reported by 35 participants, representing 60 patients, the majority of whom were 14-18 years of age. Nine (9) partici-pants recalled an explicit request for MAID, representing 17 minors. Exploratory discussions with patients about MAID, on behalf of minor patients, were reported by 118 participants, representing 419 minor patients, the majority of whom were under 1 year of age. Forty-five (45) participants recalled an explicit request for MAID, representing 91 parents, the majority of whom had children under 1 year. Conclusion CPSP participants from across Canada reported exploratory conversations about and explicit requests for MAID from both minors and parents. Discussion with and explicit requests from parents outnumber those by minors by more than five to one. This study represents an important and innovative use of a paediatric surveillance system to inform a national conversation on a complex emerging ethical issue.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2018-rcpch.488" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.488</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
Archives of Disease in Childhood
Canada
Canadian
Child
Complication
conference abstract
Conversation
Death
Disability
Female
Human
joint
June 2018 List
Law
Major Clinical Study
Male
Medical Care
Moore-Hepburn C
Morbidity
Palliative Therapy
Pediatrician
public figure
Public Health
Rare Disease
Young Adult
-
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
March 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
March 2018 List
URL Address
<a href="http://doi.org/10.1111/dmcn.13622" target="_blank" rel="noreferrer">http://doi.org/10.1111/dmcn.13622</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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Prevalence and management of dystonia in a paediatric palliative care cohort
Publisher
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Developmental Medicine And Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
dystonia; palliative therapy; prevalence; 302-17-0 (chloral hydrate); 4205-90-7 (clonidine); 4205-91-8 (clonidine); 57066-25-8 (clonidine); benzodiazepine derivative; Child; chloral hydrate; Clinical Article; clonidine; cohort analysis; cross-sectional study; Diagnosis; documentation; England; Female; Human; joint; Male; neurology; precancer; preschool child; seizure
Creator
An entity primarily responsible for making the resource
Slater T; Laddie J; Hughes G; Lumsden DE
Description
An account of the resource
Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into "passport type" individual plans, as advocated by the Royal College of Paediatrics and Child Health. This is rarer in dystonia. We evaluated the comparative frequency of dystonia and seizures in a cohort of children receiving paediatric palliative care and examined how emergency plans differ between neurology, palliative care and in collaboration. Methods: We performed a cross-sectional analysis of the palliative care database at Evelina London Children's Hospital, a non-malignant caseload covering southeast England. Documentation over 12 months (preceding July 2017) was reviewed to assess the frequency of patients with dystonia and seizures, current relevant therapies and proposed emergency management. Results: In a cohort of 109 children with a complex range of diagnoses (mean age = 6.0 years), 37% (n=40) suffered from seizures, 27% (n=29) from dystonia and 43% (n=47) from both. Emergency dystonia plans were identified in 51.7% (15/29) of patients: 7 by palliative care and 8 by neurology. No collaborative plans were found. Emergency seizure plans were identified in 80% (32/40) of patients: 11 by palliative care, 9 by neurology and 12 in collaboration. Conclusions: Dystonia is almost as common as seizures in children with non-malignant conditions receiving palliative care. Individualised seizures plans were commonly documented, but less for prolonged dystonic episodes. Dystonia management was more often led by neurology, in contrast to clear evidence of joint working in patients with seizures. Medications differed for dystonia: palliative care promoted conservative measures and benzodiazepines, whereas clonidine hydrochloride and chloral hydrate were favoured by neurology. Paediatric palliative care is playing an increasing role in life-limiting and life-threatening neurological conditions. However, increased collaborative working is essential to ensure consistent patient-focussed management.
2017
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/dmcn.13622" target="_blank" rel="noreferrer">10.1111/dmcn.13622</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
302-17-0 (chloral hydrate)
4205-90-7 (clonidine)
4205-91-8 (clonidine)
57066-25-8 (clonidine)
benzodiazepine derivative
Child
chloral hydrate
Clinical Article
clonidine
Cohort Analysis
Cross-sectional Study
Developmental Medicine and Child Neurology
Diagnosis
Documentation
Dystonia
England
Female
Hughes G
Human
joint
Laddie J
Lumsden DE
Male
March 2018 List
Neurology
Palliative Therapy
precancer
Preschool Child
Prevalence
Seizure
Slater T