COVID-19 : quelles répercussions sur la coopération entre les acteurs du soin et de l'accompagnement ?

INTRODUCTION: During the COVID-19 health crisis, the official mechanisms of democracy in health, partnership, and participation were undermined. However, mechanisms that were less visible at the institutional level developed, driven by actors in the field. PURPOSE OF THE RESEARCH: This article aims to better understand the impacts of the epidemic on partnerships in health and in situations of disability during the period 2020–2021 Results: The participants’ responses (study 1) and narrative (study 2) were analyzed using the lexical analysis software Iramuteq. The results show that while the pandemic revealed difficulties in terms of cooperation between the health and medico-social fields, it also brought to light new operations between the actors and initiatives fostering creativity. CONCLUSIONS: These results support the idea of a paradigm shift involving the recognition of the plurality of knowledge at work in the relationship between users, professionals, and decision makers.

Specifics of chronic fatigue syndrome coping strategies identified in a French flash survey during the COVID-19 containment.

The COVID-19 pandemic has focused health systems on supporting patients affected by this virus. Meanwhile in the community, many other contained patients could only use self-care strategies, especially in countries that have set up a long and strict containment such as France. The study aimed to compare coping strategies deployed by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS; a poorly recognised syndrome) to those with better known and referenced chronic conditions. An online flash survey was conducted during the containment period in partnership with French Patients Organizations including ME/CFS national association. Therefore, 'Brief COPE' version of Lazarus and Folkman's Ways of Coping Check List has been adapted to the specificity of the containment. The survey was e-distributed in France from 15 April to 11 May 2020. Differences of coping strategies were analyzed using Wilcoxon-Mann-Withney test. Amongst 637 responses, 192 were complete, presenting a wide variety of diseases, including 93 ME/CFS. The latter have significantly different coping strategies than recognised diagnosed diseases patients: similar uses of emotion focused coping but less uses of seek social support and problem-focused copings. In conclusion, coping strategies are different for those who deal with the daily experience of ME/CFS, highly disabling chronic condition with diagnostic ambiguity, low degree of medical and social recognition and without treatment. Better understanding of those strategies is needed to provide the means for health promotion researchers, managers and clinicians, to accompany those patients.

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.

Patients' Participation in Health Research: A Classification of Cooperation Schemes.

BACKGROUND: The number of academic papers referring to patient engagement or to related terms has been rising sharply for at least 20 years; several review articles have recently been published enumerating a wide variety of situations of patient involvement in research and partnership with health professionals. OBJECTIVE: As no standardized keywords and no shared classifications exist to facilitate comparative studies of situations where patients and their organizations are recognized as coresearchers, this paper purports to create a typology to analyze those situations. METHODS: Based on 8 already existing meta-reviews or related studies, this work is achieved using a template based on Claude Bernard's conceptualization about experimental medicine. RESULTS: This typology allows differentiating between modes of involvement and levels of patients reflexivity mobilized in evidence-based medicine (EBM) trials. Screening through a first set of various meta-reviews using this typology shows that a high level of reflexivity is seldom observed and seen only when a patient organization (PO) is involved in the process. This suggests that such an organization can play several roles essential to high reflexivity trials; the PO is capable not only of grouping singular approaches but also of synchronizing and correlating them. However, as nowadays health researchers and POs give more attention to syndromes or troubles for which EBM clinical trials are not relevant due to lack of biomedical indicators (eg, fibromyalgia, chronic fatigue syndrome, or psychiatric disorders), a supplementary mediation category is added to take into account action-research, community-based participatory research, and grounded theories. CONCLUSIONS: With this new category, this typology should be able to classify most of the cooperation schemes and thus be a useful tool for the next systematic reviews.

The patient-as-partner approach in health care: a conceptual framework for a necessary transition.

The prevalence of chronic diseases today calls for new ways of working with patients to manage their care. Although patient-centered approaches have contributed to significant advances in care and to treatments that more fully respect patients' preferences, values, and personal experiences, the reality is that health care professionals still hold a monopoly on the role of healer. Patients live with their conditions every day and are experts when it comes to their own experiences of illness; this expertise should be welcomed, valued, and fostered by other members of the care team. The patient-as-partner approach embodies the ideal of making the patient a bona fide member of the health care team, a true partner in his or her care. Since 2010, the University of Montreal, through the Direction of Collaboration and Patient Partnership, has embraced this approach. Patients are not only active members of their own health care team but also are involved in research and provide valuable training to health sciences students. Including patients as full partners in the health care team entails a significant shift in both the medical practice and medical education cultures. In this perspective, the authors describe this innovative approach to patient care, including the conceptual framework used in its development and the main achievements of patient partners in education, health care, and research.