Building an empowerment program to improve the health of patients with severe mental disorders / Exemple de coconstruction d'un programme d'empowerment en faveur de la santé des personnes vivant avec des troubles psychiques

Introduction: Risk factors and cardiovascular diseases are overrepresented in people with severe and persistent mental disorders. A person diagnosed with schizophrenia or bipolar disorder is two to three times more likely to die of cardiovascular disease than the general population. Purpose of research: An empowerment program has been co-created to reduce these health inequalities. It is one part of the COPsyCAT project. The people-centered approach has been used. The participation of the patients, caregivers, and health professionals was decisive. Results: Stakeholders redefined the objectives of the program. The aim is to improve quality of life, rather than reducing cardiovascular risk. Existing tools -that have been evaluated for their usability - were selected to allow for self-directed patient orientation, so that the constraints between psychiatry and primary care could be circumvented. The program is based on the pooling of existing resources in a territory. The individual power of action and the organization of healthy offers are thus designed to reinforce each other. Conclusions: This article concretely describes the steps through to which the COPsyCAT empowerment program was designed, in co-construction by the researchers of the study, the users and user associations and healthcare professionals at based on their experiential knowledge. The feasibility of the program and the appropriation of tools in real situations will soon be evaluated. The measure of the program's effectiveness on cardiovascular risk will come in second time.

Introduction: Au sein de la population présentant des troubles psychiques sévères et persistants, on observe une surreprésentation des facteurs de risque et des pathologies cardiovasculaires. Une personne chez qui un diagnostic de schizophrénie ou de troubles bipolaires a été porté aurait deux à trois fois plus de risque de mourir d'une maladie cardiovasculaire que la population générale. But de l'étude: Dans le cadre du projet « Collaboration patient-soignant pour une meilleure prise en charge des troubles cardiovasculaires des patients souffrant de troubles psychiques au long cours ¼ (COPsyCAT), un programme d'empowerment a été coconstruit pour réduire ces inégalités de santé. La prise en compte de l'expérience et des besoins des patients, de leurs aidants et des professionnels de santé est au cœur de chacune des étapes méthodologiques suivies pour la création du programme. Résultats: Les parties prenantes ont défini le programme comme devant viser l'amélioration de la qualité de vie et non la réduction du risque cardiovasculaire. Des outils ont été sélectionnés selon leur maniabilité pour permettre l'orientation autogérée des patients, de telle sorte que les contraintes inhérentes aux cloisonnements entre psychiatrie et soins primaires soient contournées. Le programme se base sur la mutualisation des ressources existantes sur un territoire. Pouvoir d'agir individuel et construction de contexte favorable à la santé sont ainsi pensés pour se renforcer mutuellement et agir sur des leviers réformateurs. Conclusions: Cet article décrit concrètement les étapes grâce auxquelles le programme d'empowerment COPsyCAT a été conçu, en coconstruction par les chercheurs de l'étude, les usagers et associations d'usagers et les professionnels de santé à partir de leurs savoirs expérientiels. La faisabilité du programme et l'appropriation des outils en situation réelle va être prochainement évaluée. La mesure de l'efficacité du programme sur le risque cardiovasculaire viendra dans un second temps.

Reducing cardiovascular risk in people living with long-term psychiatric disorders / Réduire le risque cardiovasculaire chez les personnes vivant avec des troubles psychiques

INTRODUCTION: This qualitative study based on focus group study aims to identify experiences, expectations, and representations of people with long-term mental illness and their caregivers regarding cardiovascular disease and its risk factors. The aim of this work is to build a cardiovascular risk reduction program for people affected by long-term mental illness. RESULTS: Four major themes were identified in the corpus: (1) knowledge concerning physical health, (2) barriers to the implementation of better practices, (3) levers towards a healthier life and (4) expectations and needs for a better lifestyle. CONCLUSIONS: This work has provided us with concrete elements for the creation of a cardiovascular risk reduction program for people living with long-term mental illness. The challenges of this program will be to adapt to the needs and expectations of people living with long-term mental illness while facilitating the role of caregivers.

Introduction: Cette étude qualitative, basée sur des Focus Groups, vise à identifier les expériences, attentes et représentations des personnes ayant des troubles psychiques au long cours (TPLC) ainsi que des aidants concernant les maladies cardiovasculaires et leurs facteurs de risque. Le but de ce travail est de construire un programme de réduction du risque cardiovasculaire (CV), destiné aux personnes concernées par ces troubles. Résultats: Quatre thèmes majeurs ont été identifiés dans le corpus : (1) les connaissances et acquis concernant la santé physique, (2) les freins à la mise en place de meilleures pratiques, (3) les leviers vers une vie plus saine et (4) les attentes et besoins pour une meilleure hygiène de vie. Conclusions: Ce travail nous a fourni des éléments concrets pour la création d'un programme de réduction du risque CV pour les personnes vivant avec un TPLC. Les enjeux de ce programme seront de s'adapter aux besoins et aux attentes des personnes vivant avec un TPLC tout en facilitant le rôle des aidants.

Results of a Qualitative Study Aimed at Building a Programme to Reduce Cardiovascular Risk in People with Severe Mental Illness.

People with severe mental illness (PSMI) have a shorter life expectancy and are more likely to have cardiovascular disease than the general population. Patients, carers, psychiatric professionals and primary care providers can all play a role in increasing PSMI physical health. The present qualitative exploratory study aimed to explore the views of these four populations as part of the multi-phase COPsyCAT project, whose objective is to build and test a cardiovascular risk prevention programme for PSMI. Overall, 107 people participated in the study's 16 focus groups, which were transcribed and analysed in a thematic analysis. With a view to building the health promotion programme, major themes identified in the corpus were translated into a list of needs as follows: communication, information, training and support. Results show that it is essential to improve communication between all the different stakeholders in mental health. The greatest challenge facing this programme will be to adapt it to the needs and expectations of PSMI while facilitating work between the various mental health stakeholders. Simple and inexpensive actions could be taken to improve the cardiovascular health of PSMI and will be experimented with during the programme's feasibility study which will start in September 2022.

Social Representations of e-Mental Health Among the Actors of the Health Care System: Free-Association Study.

BACKGROUND: Electronic mental (e-mental) health offers an opportunity to overcome many challenges such as cost, accessibility, and the stigma associated with mental health, and most people with lived experiences of mental problems are in favor of using applications and websites to manage their mental health problems. However, the use of these new technologies remains weak in the area of mental health and psychiatry. OBJECTIVE: This study aimed to characterize the social representations associated with e-mental health by all actors to implement new technologies in the best possible way in the health system. METHODS: A free-association task method was used. The data were subjected to a lexicometric analysis to qualify and quantify words by analyzing their statistical distribution, using the ALCESTE method with the IRaMuTeQ software. RESULTS: In order of frequency, the terms most frequently used to describe e-mental health in the whole corpus are: "care" (n=21), "internet" (n=21), "computing" (n=15), "health" (n=14), "information" (n=13), "patient" (n=12), and "tool" (n=12). The corpus of text is divided into 2 themes, with technological and computing terms on one side and medical and public health terms on the other. The largest family is focused on "care," "advances," "research," "life," "quality," and "well-being," which was significantly associated with users. The nursing group used very medical terms such as "treatment," "diagnosis," "psychiatry"," and "patient" to define e-mental health. CONCLUSIONS: This study shows that there is a gap between the representations of users on e-mental health as a tool for improving their quality of life and those of health professionals (except nurses) that are more focused on the technological potential of these digital care tools. Developers, designers, clinicians, and users must be aware of the social representation of e-mental health conditions uses and intention of use. This understanding of everyone's stakes will make it possible to redirect the development of tools to adapt them as much as possible to the needs and expectations of the actors of the mental health system.

How service users and carers understand, perceive, rephrase, and communicate about "depressive episode" and "schizophrenia" diagnoses: an international participatory research.

BACKGROUND: For ICD-11, the WHO emphasized the clinical utility of communication and the need to involve service users and carers in the revision process. AIMS: The objective was to assess whether medical vocabulary was accessible, which kinds of feelings it activated, whether and how users and carers would like to rephrase terms, and whether they used diagnosis to talk about mental health experiences. METHOD: An innovative protocol focused on two diagnoses (depressive episode and schizophrenia) was implemented in 15 different countries. The same issues were discussed with users and carers: understanding, feelings, rephrasing, and communication. RESULTS: Most participants reported understanding the diagnoses, but associated them with negative feelings. While the negativity of "depressive episode" mostly came from the concept itself, that of "schizophrenia" was largely based on its social impact and stigmatization associated with "mental illness". When rephrasing "depressive episode", a majority kept the root "depress*", and suppressed the temporal dimension or renamed it. Almost no one suggested a reformulation based on "schizophrenia". Finally, when communicating, no one used the phrase "depressive episode". Some participants used words based on "depress", but no one mentioned "episode". Very few used "schizophrenia". CONCLUSION: Data revealed a gap between concepts and emotional and cognitive experiences. Both professional and experiential language and knowledge have to be considered as complementary. Consequently, the ICD should be co-constructed by professionals, service users, and carers. It should take the emotional component of language, and the diversity of linguistic and cultural contexts, into account.

Analysis of the Recomposition of Norms and Representations in the Field of Psychiatry and Mental Health in the Age of Electronic Mental Health: Qualitative Study.

BACKGROUND: For the World Health Organization, electronic health (eHealth) is seen as an effective way to improve therapeutic practices and disease prevention in health. Digital tools lead to major changes in the field of mental medicine, but specific analyses are required to understand and accompany these changes. OBJECTIVE: Our objective was to highlight the positions of the different stakeholders of the mental health care system on eHealth services and tools, as well as to establish professional and user group profiles of these positions and the uses of these services. METHODS: In order to acquire the opinions and expectations of different categories of people, we carried out a qualitative study based on 10 focus groups (n=70, from 3-12 people per group) composed of: general practitioners, psychiatrists, psychologists, social workers, occupational therapists, nurses, caregivers, mental health services users, user representatives, and the general public. The analyses of focus group discussions were performed independently by four investigators through a common analysis grid. The constant comparative method was adopted within this framework. RESULTS: The interviewees expressed different problems that new technologies engender in the field of mental health. What was previously strictly under the jurisdiction of physicians now tends to be fragmented and distributed over different groups and locations. New technologies reposition care in the field of domestic, rather than therapeutic, activities, and thus the conception of care as an autonomous activity in the subject's life is questioned. The ideal of social autonomy through technology is part of the new logic of health democracy and empowerment, which is linked to a strong, contemporary aspiration to perform. Participants emphasized that there was the potential risk of a decrease in autonomy for the digitally engaged patient, while personal empowerment could become a set of obligations. CONCLUSIONS: This qualitative research highlights the heterogeneity of opinions among the groups and within each group. It suggests that opinions on electronic mental health devices are still far from being stabilized, and that a change management process should be set up to both regulate the development and facilitate the use of these tools.

A collaboration between service users and professionals for the development and evaluation of a new program for cardiovascular risk management in persons with a diagnosis of severe mental illness: French multicenter qualitative and feasibility studies.

BACKGROUND: Persons with a diagnosis of severe mental illness have a life expectancy that is 20 years lower than the general population, and they are disproportionately affected by cardiovascular disorders. Improving the management of cardiovascular risk is one of the main challenges for the public health system. In the care pathway of persons with a diagnosis of severe mental illness, a better understanding of limiting and facilitating factors is required. The objective was to include persons with a diagnosis of severe mental illness, carers, and primary and mental health professionals in the creation and evaluation (feasibility) of a health promotion program designed to improve cardiovascular risk management through empowerment. METHODS: This study combines a mixed methodology with qualitative and quantitative components. A multicenter prospective qualitative study was conducted in seven mental health units in France and was coordinated by a steering committee composed of persons with a diagnosis of severe mental illness, carers, and primary and mental health professionals. RESULTS: This health promotion program must enable persons with a diagnosis of severe mental illness to assert their right to self-determination and to exercise greater control over their lives, beyond their diagnosis and care. Following a preliminary feasibility study, the effectiveness of this new tool will be evaluated using a randomized controlled trial in a second study. CONCLUSIONS: The findings can be used by health organizations as a starting point for developing new and improved services for persons with a diagnosis of severe mental illness.Trial registration Clinical Trials Gov NCT03689296. Date registered September 28, 2018.