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pediatrics Archives - Pediatric Ethicscope

editorial board member Pediatric Ethicscope: the Journal of Pediatric Bioethics and Pediatric Ethics

Considerations for Informed Consent in Clinical Trials Involving Neonates

By | Articles, Peer-Reviewed Articles

This paper presents guidance developed by a multidisciplinary group of bioethicists and patient advocates considering patient- and parent-centric approaches to informed consent in neonatal research in the context of an ongoing clinical trial for neonates with spinal muscular atrophy (SMA).

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The Use of Suffering in Pediatric Bioethics and Clinical Literature

The Use of Suffering in Pediatric Bioethics and Clinical Literature: A Qualitative Content Analysis

By | Articles, Peer-Reviewed Articles

“Suffering” is a concept that is frequently invoked in discussions about medical decision-making in pediatrics. However, empirical accounts of how the term is used are lacking, creating confusion about the concept and leaving parents and providers unsure about the appropriate ways to account for it in pediatric decision-making. We conducted a qualitative content analysis of pediatric bioethics and clinical literature in selected journals from 2007 to 2017 to determine how authors define and operationalize the term when referring to issues in pediatric treatment.

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Pediatric Ethicscope: the Journal of Pediatric Bioethics and Pediatric Ethics ethics of disclosing SUDEP

The Ethics of Disclosing and Discussing SUDEP with Families of Children Newly Diagnosed with Epilepsy

By | Articles, Peer-Reviewed Articles

The decision to discuss sudden unexplained death in epilepsy (SUDEP) presents a complicated ethical picture with potentially conflicting principles. The neurologist must decide how to disclose and discuss the problem of SUDEP, balancing the desire to help families by empowering them, without doing harm by overwhelming them with fear.

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