• TOPIC 1
    Patients and their relatives’ subjectivation modes « Chronic illness »

TOPIC 1
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.

The Topics Covered :

Illness experience of children and teenagers and the transition between Pediatric Medicine and Adult Medicine « The transition of young people affected by chronic illness to adult age and to associated care services. »

 C. Alberti et S. Gottot (UMR-S 1123 ECEVE Paris Diderot) ; « Transition and insertion into the adult world of young people having sickle cell anemia  ».
Maria Texeira « Medical and psychological treatment of children and teenargers with cancer », resp. K. – L. Schwering (CRPMS/Paris Diderot ) et N. Boissel (Unité fonctionnelle d’Hématologie Adolescents et Jeunes adultes, Hôpital Saint Louis).
- « A Critical time of subjectivation in a rare genetic disease : Teh parent Hood representation and its impact on identity of teenagers and young adults having osteogenesis imperfecta with dominante transmission » Olivier Putois (CRPMS – Paris Diderot)

Experience of transplanted people and their relatives :

better understanding and meeting psychological, medical, social and legal needs; Contributing to the ethics question contribuer and improve training of professionals (Resp. C. Lefève, Centre G. Canguilhem, Paris Diderot/Pr O. Soubrane, Service de Chirurgie digestive et hépato-biliaire Hôpital Beaujon/D. Weinstock, Institute for Health and Social Policy McGill University (Espace de recherche d’accompagnement et d’information des patients greffés hépatiques); « Organs and bone marrow transplants for children and teenagers : psychosocial challenges of intra-family donation » (resp. K. – L. Schwering, CRPMS/Paris Diderot)

Management of users of medicine and risks involved,

in order to better understand patients/users behaviors, whom are aware of medical risks, modify their medicine use (prescribed by a health care professional, recommended by a pharmacist, or chosen in the frame of self-medication) (Resp. S. Fainzang CERMES3 Paris Descartes)

Life mutation by deep brain stimulation,

in collaboration with the ANR project NormaStim « The neurosciences. From experimentation to Clinic » focused on epistemological, ethical and legal challenges of deep brain stimulation. (resp. Sonia Desmoulins, UMR Droit comparé Paris 1/Marie Gaille SPHERE Paris Diderot/Baptiste Moutaud, CERMES3 Paris Descartes)

Psychic implications of sensory deficit (cochlear implants),

in order to better understand the Psychic challenges of deafness, taking into account the topic of therapeutics education of patients and better training medical professionals.
R. Potier, CRPMS Paris Diderot/ B. Frachet, Centre de référence des Implants Cochléaires Hop. Rotschild/Paris 13 en collaboration avec le Department of Psychiatry and Behavioral Science, Standford University) ;

The remake up of boundaries between normal and pathological,

subject to different interpretations between patients and doctors, defined nowadays by the outbreak of new continuums, such as weakness or recovery following a cancer,Recherches sur l’après cancer, resp. Lefève (Centre G. Canguilhem) et J. – C. Mino (Institut Curie).

Patients’ stories as well as literature, film-making, televison atworks allow to better understand the psychic implications of Sickness,

the processes of Sickness appropriation, reconstruction or personal transformations and social relationships, as well as social and cultural representations, past or present, of Sickness and Medicine. Researches in collaboration with the Programme CAMELIA : La CAsuistique MEdicale Éthique dans la LIttérature et les Arts du XVIIIe siècle à nos jours (LARCA Paris Diderot/ PRISMES Paris 3/Laboratoire Ethique médicale Paris Descartes).