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  1. When Parents Refuse: Resolving Entrenched Disagreements Between Parents and Clinicians in Situations of Uncertainty and Complexity.Janine Penfield Winters - 2018 - American Journal of Bioethics 18 (8):20-31.
    When shared decision making breaks down and parents and medical providers have developed entrenched and conflicting views, ethical frameworks are needed to find a way forward. This article reviews the evolution of thought about the best interest standard and then discusses the advantages of the harm principle (HP) and the zone of parental discretion (ZPD). Applying these frameworks to parental refusals in situations of complexity and uncertainty presents challenges that necessitate concrete substeps to analyze the big picture and identify key (...)
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  • Parents of Adults with Diminished Self-Governance.Jennifer Desante, David Degrazia & Marion Danis - 2016 - Cambridge Quarterly of Healthcare Ethics 25 (1):93-107.
    Most theories of parenthood assume, at least implicitly, that a child will grow up to be an independent, autonomous adult. However, some children with cognitive limitations or psychiatric illness are unable to do so. For this reason, these accounts do not accommodate the circumstances and responsibilities of parents of such adult children. Our article attempts to correct this deficiency. In particular, we describe some of the common characteristics and experiences of this population of parents and children, examine the unique aspects (...)
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  • The moral experiences of children with osteogenesis imperfecta.Yi Wen Wang, Franco A. Carnevale, Maria Ezcurra, Khadidja Chougui, Claudette Bilodeau, Sophia Siedlikowski & Argerie Tsimicalis - 2022 - Nursing Ethics 29 (7-8):1773-1791.
    BackgroundSerious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their moral experiences, defined as their sense of fulfillment towards personal values and beliefs.Research aimsTo explore children’s actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression.Research designA focused ethnography was conducted using the moral experiences framework with data from key informant interviews; participant observations, semi-structured interviews, and (...)
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