Le patient et sa famille sont pris dans une interaction réciproque : dans un sens la pathologie entraîne des souffrances familiales et dans l’autre, le comportement familial retentit sur la maladie du patient et son évolution. Il semble donc essentiel pour le clinicien de travailler avec la famille sur le rapport qu’elle entretient avec le trouble bipolaire, c’est-à-dire ses connaissances mais surtout ses représentations de la pathologie. Notre étude vise à observer si le rapport initial au trouble bipolaire évolue après le suivi d’un programme d’éducation thérapeutique (ETP). Menée au Centre expert bipolaire de Bordeaux, notre recherche s’appuie sur un échantillon de 145 participants (78 patients et 67 accompagnants familiaux), tous questionnés avant et après le programme d’ETP (12 séances sur 6 mois). Le Brief Illness Perception Questionnaire Revised (Moss-Morris, 2002) évalue la perception du trouble bipolaire, l’IPQ-R permet d’obtenir un score évaluant la menace perçue générée par la maladie, tandis que le BP Quizz (Fondation Fondamental) enregistre le niveau de connaissance sur le trouble. Les résultats montrent une amélioration des connaissances et une modification des représentations du trouble. Les aidants, au même titre que les patients, perçoivent ainsi le trouble bipolaire comme moins menaçant, moins sévère et plus contrôlable. En ETP, la juste posture du clinicien serait alors de soutenir ce processus d’évolution et le changement des représentations, au-delà de transmettre des connaissances sur le trouble.

The patient with bipolar disorder and his family are caught in a reciprocal interaction: on one hand, the pathology leads to family sufferings and on the other hand, family behavior affects the disease of the patient and its development. Therefore, it seems of core importance that the psychologist should work with the family on their perception of bipolar disorder, that is to say, on their knowledge and psychological representations of the pathology. The aim of our study is to assess whether the initial perception of bipolar disorder evolves after a therapeutic education program.

Our research was conducted at the Bipolar Expertise Centre in Bordeaux/Centre Expert Bipolaire in Bordeaux on a sample of 145 participants (78patients and 67 family caregivers). They were all interviewed before and after the therapeutic education program (12 sessions in 6months). The Brief Illness Perception Questionnaire Revised (Moss-Morris, 2002) measures the perception of bipolar disorder and the BP Quizz (Fondation Fondamental) assesses the degree of knowledge of the disorder.

Results show that therapeutic education helps families to level up their knowledge about bipolar disorder. Furthermore, representations on bipolar disorder have globally changed so that on average, bipolar disorder is viewed as less threatening by families after 12 sessions of therapeutic education. More precisely, after the program, families have a better understanding and a better insight of the disorder, which is then perceived as being less severe. On the emotional level, anxiety and stress have decreased. So there are an increase of knowledge and a change in perception.

Our study shows that the therapeutic education program enables families to change their perception of the disease, that is to say, their knowledge but also their representations of the disease, which is a fundamental element according to the models of therapeutic education. Our results point out one of the active processes of therapeutic education at work in the sessions: in the perception of the disease, which is composed of both knowledge and representations of the disease, just a change in representations constitutes a lever for therapeutic education. Therefore, working on representations should be a therapeutic target. As a conclusion, we can say that therapeutic education of families cannot be reduced to an educational dimension which would only consist of gaining knowledge. Then, the right posture of the psychologist is to hold each participant's own development and changing process of representations.