La schizophrénie est un trouble psychique qui peut être chronique et conduire à des difficultés d’intégration sociale et un isolement que les patients eux-mêmes et leurs proches vivent mal. L’objectif de notre étude est d’évaluer la perception de la maladie par les proches, ainsi que la façon dont ils vivent le système de soins français.

Notre population est constituée de proches aidants, recrutés à travers une association de familles. Nous avons utilisé le Bref Questionnaire de Perception de la Maladie, ainsi qu’un entretien portant sur le vécu du système de soins par les proches, en particulier en termes de communication du diagnostic, d’information sur la maladie et le traitement, de psychoéducation familiale, de vécu de l’hospitalisation et d’accès aux professionnels de santé.

Nos résultats tendent à montrer que les perceptions de la maladie des 27 proches inclus dans notre recherche sont fortement négatives, notamment concernant la durée estimée de la maladie et la fréquence observée des symptômes. Un meilleur accès au diagnostic est cependant associé à une perception plus positive de la chronicité, tandis que la communication avec les professionnels de santé est liée à la perception d’une meilleure efficacité de traitement. La psychoéducation familiale est associée à la perception de symptômes moins nombreux.

Ces résultats plaident en faveur d’une meilleure intégration des familles, encore mises à l’écart dans le processus de soin alors qu’elles pourraient jouer un rôle stratégique, et un élargissement de l’accès à la psychoéducation pour tous les proches impliqués dans les soins.

Schizophrenia is a long-term, stigmatized disease which often leads to social impairment, unemployment and isolation, with heavy negative social and psychological consequences both on patients and their families. Close relatives’ perceptions of the illness have an impact on their mood, and then on the course of the patient's disease itself. In this context, our objective is to evaluate the perceptions of French close relatives of people with schizophrenia or schizophrenia spectrum disorders, about the disease itself, as well as their experience within the mental healthcare system.

Our population is constituted of close relatives of people experiencing schizophrenia or schizophrenia spectrum disorders, recruited through an active patient and families association. We used a French translation of a standardized questionnaire, the Brief Illness Perception Questionnaire, as well as an extensive semi-structured interview assessing the experience of the mental healthcare system (diagnosis divulgation, information about disease and treatment, family psychoeducation, hospitalization experience, and access to health professionals). Some questions in the last were open-ended questions, which allowed us to gather detailed and personal responses, in order to be able to illustrate our quantitative findings with brief clinical cases.

Among the 27 close relatives included in our research, results to the standardized questionnaires show threatening perceptions of the disease, in particular regarding the probable duration of the disease and the frequency of symptoms. In our study, a better access to diagnosis is associated with a shorter perceived probable duration of the disease, while an easier communication with healthcare professionals (in particular nurses) is associated with the perception of a better efficiency of the treatment. Family psychoeducation seems to be associated with the perception of less frequent symptoms. When the patient lives independently or is older, close relatives of our sample perceive a higher risk of chronicity of the disease. Our results tend to confirm the available literature on the subject of information towards families in psychiatric services: indeed, studies, especially in the field of nursing research, have shown that families tend to feel excluded from care processes and from useful information exchanges about the patient's illness. Our study also confirms the fact that family psychoeducation seems to reduce the frequency of present symptoms in the patient as perceived by the close relative. This effect could be caused by a better understanding of the real symptoms or by an enhancement of the family mood and functioning. Even if the patient's hospitalization was a difficult or very difficult experience for close relatives, it showed no relationship with their illness negative perceptions. Sociodemographic variables of the patient, such as age or the fact of living in an independent household, were associated in our research with the close relatives’ view of a higher potential chronicity of the illness; this could be explained by a different stage of acceptation of the illness when compared to close relatives taking care of a younger or still dependent patient.

Our results plead for further research on a larger and less homogeneous sample. Confirming our findings could help build useful recommendations leading to better integrated families who currently seem to feel relatively isolated and exclused in the healthcare process, despite the strategic role they could play and despite the many recommendations of public health policies in that matter. Efforts should continue to be made to reach the goal of a better inclusion of families and close relatives of people experiencing schizophrenia or schizophrenia spectrum disorders, in particular in the field of information and communication with health professionals, both areas which seem to have a potential effect on close relatives’ illness negative perceptions. Family psychoeducation deserves more attention and should be more systematically proposed to French families with an easier and free access.