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  1. Tracheotomy and children with spinal muscular atrophy type 1.Brigitte Rul, Franco Carnevale, Brigitte Estournet, Michèle Rudler & Christian Hervé - 2012 - Nursing Ethics 19 (3):408-418.
    Spinal muscular atrophy (SMA) type 1 is a genetic neuromuscular disease in children that leads to degeneration of spinal cord motor neurons. This sometimes results in severe muscular paralysis requiring mechanical ventilation to sustain the child’s life. The onset of SMA type 1, the most severe form of the disease, is during the first year of life. These children become severely paralysed, but retain their intellectual capacity. Ethical concerns arise when mechanical ventilation becomes necessary for survival. When professionals assess the (...)
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  • (Dis)-Trust in transitioning ventilator-dependent children from hospital to homecare.Kiran Pohar Manhas & Ian Mitchell - 2015 - Nursing Ethics 22 (8):913-927.
    Background: Scholarly work is needed to develop the conceptual and theoretical understanding of trust to nursing practice. The transition from hospital care to complex pediatric homecare involves nurses in myriad roles, including management and care provision. Complex pediatric homecare transforms children, families, professionals, and communities, but its exact implications are unclear. Research objectives: To conduct an ethical inquiry into the role and responsibilities of nurses in the qualitative experience of adults involved in the hospital-to-home transition of young, ventilator-dependent children. Research (...)
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