Difficult patients?
Type de matériel :
81
Myotonic dystrophy type 1 (MD1) is a rare neuromuscular genetic disease affecting several functions and leading to cognitive impairments. Physicians often use these symptoms to explain the problems they face with these “difficult patients.” However, the classification of these disorders remains open to debate. ASHAM research aims to understand the daily lives of people with DM1, and the circumstances of their care and support, based on a qualitative study with patients and health professionals. The article proposes to analyze four typical situations of problematic consultations, each of them showing a disparity between the real-life experience of patients and the physicians’ assessments. Patients and health professionals do not describe or classify the disease in the same way. This explanation allows the notion of the “difficult patient” to be contextualized in favor of collective accountability.
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