Le trouble obsessionnel compulsif (TOC) est source de handicap avec des répercussions personnelles, sociales et familiales pour les patients et aussi leurs proches. La prise en compte des différentes représentations et attentes des personnes confrontées au TOC pourrait permettre d’améliorer le processus de soin et les relations interpersonnelles. Nous avons donc mené une enquête visant à caractériser les représentations de trois catégories de populations directement concernées par le TOC : patients (n=86), proches (n=38) et cliniciens (n=79). Le questionnaire portait sur la nosographie, l’étiologie, la thérapeutique, le handicap psychique et aussi sur les représentations du TOC et de son évolution, son retentissement personnel, social et professionnel ainsi que l’impact sur la qualité de vie. Les résultats montrent un recouvrement partiel des représentations sur la définition du TOC selon les critères du DSM ainsi que sur le retentissement du trouble, mais les trois populations se distinguent dans leur vision de l’étiologie et leurs attentes quant au processus thérapeutique. À ce sujet, les patients se focalisent sur les modalités de prise en charge (thérapies alternatives) et les proches sur leur rôle dans l’accompagnement. Notre enquête souligne l’importance pour les professionnels de santé de prendre en compte les attentes des patients et de leurs proches afin de maximiser l’alliance thérapeutique et l’efficience du traitement.

Obsessive compulsive disorder (OCD) is one of the most disabling mental health disorders due to its negative impact on the patient's quality of life as well on that of her living caregivers. This disorder generates an additional burden for relatives, which may in turn affect the family dynamics and impair the evolution of the disease. Along with medications, cognitive behavioral therapy (CBT) represents a well-validated first line of treatment for OCD. However, therapeutic responses across patients are uneven with often residual symptoms and limited quality of life improvements. In total, OCD is a severely debilitating disease with repercussions on both personal, social and professional lives of patients and their relatives even after clinically-delivered treatments. The mutual identification of points of convergence and divergence in social representations is a factor that contributes to satisfactory interpersonal relationships. In the care relationship in general and particularly in the field of mental health, taking account of these different representations and expectations is essential for improving the care process: upstream of the care in the choice the therapeutic strategy and in strengthening the therapeutic alliance. Although less studied, the relationship with relatives of patients also depends on representations of each which have a significant impact on clinical outcomes and experience of the disease.

To carry out the first study of cross-representations of OCD in three groups of people affected by it: those who suffer, their families and clinicians.

Considering the experiences and knowledge of patients, relatives and clinicians, we assumed that their representations related to OCD would partially overlap. Specifically, we assumed that the positioning of each population compared to the other two would differ depending on the investigated dimensions: nosology, etiology, therapy and psychiatric disability.

From 2010 to 2011 we conducted an online survey among self-declared OCD-patients (n=86), OCD-patients’ relatives (n=38) and clinicians (n=79). The questionnaire included both closed questions regarding the nosology, etiology, therapy and psychiatric disabilities and open questions probing the representations of the disorder and its evolution, its impact on personal, social and professional domains, and on the quality of life. In particular, we investigated how each population conceived the role and involvement of the relatives in the care process and how they dealt daily with the disorder.

Confirming our hypothesis, our results showed that representations of OCD converge on the DSM-based definition of the disorder conveyed by patient associations and mass media. The three populations also recognize the burden and the handicap associated with OCD considerably restrict their daily functioning. However, patients and relatives differ from clinicians in their view of the etiology and their expectations of the therapeutic process. Unexpectedly, patients do not report frequent stigmatization although this may reflect their attempt to hide their disorder as a form of self-stigmatization. Patients focus on care modalities (alternative therapies) motivated by quality of life improvement rather than symptom reduction put forward by clinicians. Relatives ask for being involved in the care process.

Our study emphasizes the importance for health professionals to take into account the expectations of patients and their relatives in order to maximize the therapeutic alliance and efficiency of treatment.