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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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June 2018 List
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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).
Text
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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
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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
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
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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
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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
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<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 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1016/j.jogn.2023.12.005" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.jogn.2023.12.005</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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Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care
Publisher
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Journal of Obstetric, Gynecologic, and Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
neonatal intensive care unit; newborn intensive care; nurse; nursing education; palliative therapy; qualitative research; adult; article; Canadian; clinical article; curriculum; female; human; immersion; Infant Newborn; interview; male; meaning-making; neonatal nurse; newborn; Palliative Care; thematic analysis; therapy
Creator
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St Louis J; Raffin-Bouchal S; Benzies K; Sinclair S
Description
An account of the resource
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. Participants: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. Methods: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. Results: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. Conclusion: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.
Identifier
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<a href="http://doi.org/10.1016/j.jogn.2023.12.005" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2023.12.005</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).
2023
Adult
Article
Benzies K
Canadian
Clinical Article
Curriculum
Female
Human
immersion
Infant Newborn
Interview
Journal of obstetric, gynecologic, and neonatal nursing
Male
March List 2024
meaning-making
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn
Newborn Intensive Care
Nurse
nursing education
Palliative Care
Palliative Therapy
Qualitative Research
Raffin-Bouchal S
Sinclair S
St Louis J
Thematic Analysis
Therapy