ASHAM Analyse sociologique des habitudes de vie des adultes atteints de Dystrophie myotonique de type 1 ou maladie de Steinert : Rapport de recherche dans le cadre du premier appel à projets de recherche 2012 Sciences humaines et sociales et maladies rares
Perrot A., Hardy A-C., Lecordier D., Péréon Y., Nadaj-Pakleza A., Magot A., Chasserieau R.
Living habits for individuals suffering from a debilitating chronic disease are poorly known, yet essential for effective nursing care to be delivered in the long term. Myotonic dystrophy type 1 (DM1 or Steinert’s disease) is a particular chronic rare disease: it is genetic and progressive; it affects several functions and currently treatment for it is solely symptomatic. Amidst this complexity, it is relatively easy to cater for this clinical diversity in medical terms through multidisciplinary care, but it is more complicated object-side relationship. The objective of this qualitative study was to understand the change in living habits and the social determinants of coping strategies in men and women aged over 20 whose DM1 symptoms have appeared in adulthood. This is research in social sciences and nursing science based on a care issue and an ethno-sociological set of issue. The investigation has shown that patient’s behavior varies according to a set of combined determinants: age, social and professional situation, marital status, values and beliefs, living environment, and so on. Then, there is a large gap between medical representation of disease and day-to-day experience and social life of patients. The stations they passed during their life show various adaptation strategies. That gives us an opportunity to improve their support.