Maladie rénale génétique et accompagnement psychologique. Vécu et attentes des patients

The AIRG association (Association for Information and Research on Genetic renal diseases) developed a questionnaire for members in order to apprehend and understand the life experience of affected persons with genetic renal diseases and to evaluate the needs in terms of psychological counseling. These renal diseases have very diverse symptoms and individual and family life history are very different. None the less the difficulties encountered have points in common. The persons suffering form these diseases are all confronted with different stages of the disease that evolve often to end-stage renal failure (and thus to dialysis and transplantation) and to the genetic aspects of these diseases that affect families in trans-generational patterns. Personal and family difficulties are closely interrelated and represent a heavy load for patients and their families and the need for psychological aid emerges. In terms of psychological counseling it appears that the equation between need and personal demand, or proposal coming from a third person, is difficult to manage. Every person should be informed that psychological counseling is an important aspect of global care and that it is accessible.