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As technology allows children to live longer with complex medical conditions, difficult decisions about care multiply. Such decisions rely on a partnership between physicians, parents, and sometimes children. Clinical consultations, the centerpiece of shared decision-making, can lead to disagreement and feelings of frustration, particularly at times of disease progression or deterioration in health.
These authors offer clinicians an approach to relationship-building, based on research in which research team members were embedded in both families' and healthcare teams' lives.
Features of the illness experience that bear on decision-making include unexpected use of information by parents, varying views of the child by parents and clinicians, an…