In Submission: The Ethical Imagination of Children with Osteogenesis Imperfecta: What Children’s Stories Teach Us about Making Safe Space in Hospital Settings



 Creating an emotionally safe surgical experience for hospitalized children remains challenging. The children’s rights movement has inspired standards of practice to promote respect for children’s preferences and their participation in the medical decisions and discussions of import to them. The gap between these standards and their practice can engender ethical harm and enduring emotional trauma. A trauma informed approach to assent practice during the high-stakes peri-operative process can help ensure that care rendered reflects the totality of children’s best interests and offers them a greater sense emotional safety. Children affected with osteogenesis imperfect represent a community intimately acquainted with pre-operative orthopedic decision making in the course of managing their increased risk of fracture and/or bone deformities at an early age. This study employed original participatory theatre research techniques at the bedside to elicit OI affected youth’s key ethical concerns about their pre-surgical care and how they would optimally transform these challenging processes as part of a focused ethnography at a large Canadian orthopedic hospital.