Patients and their relatives’ subjectivation modes « Chronic illness »

Patients and their relatives’ subjectivation modes « Chronic illness »

The Programme focuses on a characteristic of modern Medicine and a major societal challenge, which is experiencing chronic illnesses (before birth, through an easy access to biological & medical personal data, through prevention, in the management of chronic illness and following treatment, etc.). In Western countries, next to the paradigm of infectious diseases and the acute Medicine, the illness is now part of life, for life, even before birth sometimes, but also following treatments, and in numerous conditions between normal and pathological.

The programme therefore includes research on chronic illnesses, but also enlarges its research scope in order to cover the norms and shapes of lives transformed by illness and by Medicine itself, either by the predictive knowledge of illness or by medical interventions such as transplantation, cancer treatment or medical assistance for the procreation, what needs adapted medical and social responses. These new live forms put in question the paradigm of recovery and require to think a Medicine of cares and of the incurable. How Identity with illness is being built without being necessarily reduced to the status of a patient? What are the different moments of such existence ? The knowledge on illness and clinic now go beyond the boundry/scope go nowadays beyond the horizon of present and of acute treatment. Patients and doctors have to predict and anticipate the evolution and the multiple effects of illness, in order to do so, they have to take into account the patient’s history and the impact of illness on his/her personal and social life. Moreover the life of people being affected by chronic or rare illnesses, but also victims of medical hazards or pharmaceutical scandals, is not only chanted by the natural evolution of their illness(es). But also by the transitions imposed by the treatment and the organisation of cares. The subjectivation for the patient consists then of better understanding the illness, but also the jargon and logics of Medicine,  the Health system and the experience of other patients. In a more general approach, it consists of negotiating and re-composing the patient activities as well as the social and personal identities. Better understanding the experience of illness in time (relapses, recurrence, certain but also unpredictable complications, the repetition of the personal experience and its symptoms, care ruptures and their wear effects, exhaustion and even violence on the patient and his/her relatives) is necessary to ensure the continuity of cares.

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