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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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Special Edition #2 2022 List
Text
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Special Edition #2
URL Address
<a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0969733019878838</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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Parent moral distress in serious pediatric illness: A dimensional analysis
Publisher
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Nursing Ethics
Date
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2020
Subject
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Child; Critical Illness; Ethics of care; Female; Humans; Male; moral distress; neonatal care; palliative care; Parents; pediatric practice; Stress
Creator
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Mooney-Doyle K; Ulrich CM
Description
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BACKGROUND: Moral distress is an important and well-studied phenomenon among nurses and other healthcare providers, yet the conceptualization of parental moral distress remains unclear. OBJECTIVE: The objective of this dimensional analysis was to describe the nature of family moral distress in serious pediatric illness. DESIGN AND METHODS: A dimensional analysis of articles retrieved from a librarian-assisted systematic review of Scopus, CINAHL, and PsychInfo was conducted, focusing on how children, parents, other family members, and healthcare providers describe parental moral distress, both explicitly through writings on parental moral experience and implicitly through writings on parental involvement in distressing aspects of the child's serious illness. ETHICAL CONSIDERATIONS: To promote child and family best interest and minimize harm, a nuanced understanding of the moral, existential, emotional, and spiritual impact of serious pediatric illness is needed. The cases used in this dimensional analysis come from the first author's IRB approved study at the Children's Hospital of Philadelphia and subsequent published studies; or have been adapted from the literature and the authors' clinical experiences. FINDINGS: Three dimensions emerged from the literature surrounding parent moral distress: an intrapersonal dimension, an interpersonal dimension, and a spiritual/existential dimension. The overarching theme is that parents experience relational solace and distress because of the impact of their child's illness on relationships with themselves, their children, family, healthcare providers, their surrounding communities, and society. DISCUSSION: Elucidating this concept can help nurses and other professionals understand, mitigate, or eliminate antecedents to parental moral distress. We discuss how this model can facilitate future empirical and conceptual bioethics research, as well as inform the manner in which healthcare providers engage, collaborate with, and care for families during serious pediatric illness. CONCLUSION: Parent moral distress is an important and complex phenomenon that requires further theoretical and empirical investigation. We provide an integrated definition and dimensional schematic model that may serve as a starting point for future research and dialogue.
Identifier
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<a href="http://doi.org/10.1177/0969733019878838" target="_blank" rel="noreferrer noopener">10.1177/0969733019878838</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).
2020
2022 Special Edition 2 - Parent Perspectives
Child
Critical Illness
Ethics of Care
Female
Humans
Male
Mooney-Doyle K
Moral Distress
Neonatal Care
Nursing Ethics
Palliative Care
Parents
pediatric practice
Stress
Ulrich CM
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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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December 2020 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
December 2020 List
URL Address
<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">http://doi.org/10.1093/medlaw/fwz011</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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Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
Publisher
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Medical Law Review
Date
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2020
Subject
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Decision Making; Terminally Ill; Child; Children; Decision-Making; End-of-Life; Ethics of Care; Female; Gillick Competence; Guidelines as Topic; Humans; Informed Consent By Minors/ethics/legislation & jurisprudence; Mental Competency/legislation & jurisprudence; Palliative Care/ethics; Parents; Personal Autonomy; Terminal Care/ethics; Treatment Refusal; Treatment Refusal/ethics/legislation & jurisprudence; United Kingdom
Creator
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Moreton KL
Description
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It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory rights (UNCRC-Article 12), and a greater understanding of family-centred decision-making. However, the courts still largely maintain their traditional reluctance to find children Gillick competent to refuse medical treatment. In this article, I revisit Hannah's case through the narrative account provided by Hannah and her mother, to ascertain what lessons can be learnt. I use an Ethics of Care framework specially developed for children in mid-childhood, such as Hannah, to argue for more a creative and holistic approach to child decision-making in healthcare. I conclude that using traditional paradigms is untenable in the context of palliative care and at the end of life, and that the law should be able to accommodate greater, and even determinative, participation of children who are facing their own deaths.
Identifier
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<a href="http://doi.org/10.1093/medlaw/fwz011" target="_blank" rel="noreferrer noopener">10.1093/medlaw/fwz011</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).
2020
Child
Children
December 2020 List
Decision Making
Decision-making
end-of-life
Ethics of Care
Female
Gillick Competence
Guidelines As Topic
Humans
Informed Consent By Minors/ethics/legislation & jurisprudence
Medical Law Review
Mental Competency/legislation & jurisprudence
Moreton KL
Palliative Care/ethics
Parents
Personal Autonomy
Terminal Care/ethics
Terminally Ill
Treatment Refusal
Treatment Refusal/ethics/legislation & jurisprudence
United Kingdom