La mucoviscidose : ajustements entre pratiques professionnelles et travail des malades et de leurs proches

Abstract

Cystic fibrosis, the most common of rare diseases, has been mobilizing healthcare professionals and concerned individuals for the last 30 years. Since 2002, with the introduction of systematic neonatal screening, this disease has been the focus of particular attention on the part of health policy makers in France. Cystic fibrosis requires complex and coordinated care in specialized treatment centres. Therapeutic progress has considerably improved survival rates of patients and moved care to the home, but has also increased the constraints of care. At the same time, there has been an asserted focus on living day-today life under the best conditions possible. The authors of this article are or have been involved in the analysis, for operational purposes, of the efforts to work together made by healthcare professionals, patients and patients’ families at three different levels: an association of families and patients living with cystic fibrosis, specialized treatment centres, and the individual care relationship. Based on this threefold experience, the authors describe how modes of organization and professional practices have been adjusted in response to the efforts made by patients and their families to face a “life of illness” and how this process brings out a new perspective on the polysemous notion of empowerment.