Cette recherche se situe dans le champ de la formation professionnelle aux métiers de la relation éducative. A l'origine, un constat portant sur les difficultés et les pièges rencontrés par ces professionnels en situation a motivé un questionnement sur les conditions de préparation à de tels métiers. Dès lors que la formation professionnelle associe deux visées contraires d'instruction et d'émancipation dans son projet, elle tente de faire problématiser les apprenants à partir des situations éducatives rencontrées pour construire les problèmes et produire des avancées. Or, dans une société où la résolution de problème domine, former à la problématisation ne va pas toujours de soi. Certains formés se heurtent à des entraves au cours de leur trajet de formation. Elles peuvent même donner lieu à des paradoxes. L'identification des entraves montre que tout formé navigue entre deux pôles contraires et qu'il est important que chacun effectue pour lui-même un travail d'auto-évaluation en formation afin de travailler ses implications et ainsi d'éviter les dérives de logique et la création de paradoxes. / This research concerns the training of professionals in education-related fields. At the outset, a report dealing with the difficulties and hurdles encountered by these professionals in the work-place led to an investigation into training methods for such occupations. Since professional training combines two opposing objectives , namely instruction and independence of expression of ideas, the aim of this research is to present students with problem situations encountered in real life in order to dissect the issues and find solutions. In a society where resolving problems prevails, training in the analysis of problems is not always evident. During their course, some trainees are faced with obstacles which may lead to paradoxes. Identification of these obstacles shows that each trainee navigates between two opposing poles, and as part of training it is important that each trainee carries out self-evaluation to understand the implication of their actions and thus avoid lapses in logic and the creation of paradoxes.

The aim of this thesis was to investigate what an intervention comprising systematic discussion groups meant in the context of conflicts and cooperation between social care staff and nursing staff, over a period of 7–15 months. The intervention was carried out in four experimental dwellings in special types of housing for elderly and disabled people and in comparison with four similar reference dwellings. Results are based on 27 interviews prior to the intervention and 29 after. The interviewees were managers, registered nurses, enrolled nurses and care assistants and concerned their experiences regarding problematic situations that occurred in their everyday work. The questionnaires (before n=84 and after intervention n=93) used were: sense of coherence, job-satisfaction and burnout and were aimed at investigating staff experiences of working climate and the influence of the intervention. The issues were investigated both before and after the intervention. Observations were used to determine whether they could provide further knowledge about the intervention and thus extend our understanding of the marginal differences in the complementary studies. The phenomenological hermeneutic interpretation of the narratives in the interviews shows that the intervention was important to the experiences of being in problematic situations. The results before the intervention and in reference dwellings are equivalent and elucidate staff members' struggle to retain their self-esteem and to be confirmed by their colleagues. The experimental dwellings narratives show a change from rejecting to confirming communication among colleagues. Moreover, subtle changes are present which point to an emotional closeness where attempts have been made to understand colleagues' perspective and reactions where the residents are the central concern in the narratives. An analysis of the content of the interviews after intervention shows equivalent changes in experimental dwellings and reference dwellings. The analysis shows that the staff's view of problematic situations had been softened and that they viewed their colleagues as less of a hindrances. There were no mentions made of the previously indicated conflicts between social and nursing staff. The results also show that staff members are not afraid to stand by their own ideas of how they should act in various situations. The staff experience of the working climate was positive both before and after the intervention and no significant differences could be seen. What stands out from the observation study is that the groups have different cultures and thus different prerequisites for the intervention. In two of four groups the intervention seemed to give rise to positive meanings regarding the staffs´ understanding of each other, necessary for their successful cooperation, but when the groups are in the ”basic assumption phase” other additional strategies are probably also needed. The marginal differences shown in the other complementary studies can be understood in terms of two of the four groups not perceiving the intervention to any large extent. When the internal group processes are of great importance it is essential to pay attention to culture of the staff groups before the intervention is implemented.

Une maladie est considérée comme étant rare si elle touche moins d’une personne sur 2000. Étant donné les connaissances limitées sur ces conditions médicales, les adultes atteints de maladies rares peinent à être diagnostiqués rapidement et à obtenir des traitements appropriés. Ces soins inadéquats leur occasionnent des difficultés importantes dans le milieu de la santé, leurs vies quotidiennes, leurs relations interpersonnelles ainsi que leurs carrières et leurs études. Plusieurs de ces difficultés peuvent être qualifiées de situations moralement problématiques selon l’éthique pragmatiste. L’éthique pragmatiste est une théorie en éthique qui reconnaît la place centrale de la moralité dans la vie humaine. Elle souligne l’importance existentielle de ces situations pour les personnes qui les vivent. Elle apprécie leur agentivité. Elle leur offre des outils pour mieux comprendre ces situations et les résoudre. Malgré la signification qu’ont ces situations pour les personnes qui les vivent, elles n’ont pas été étudiées précédemment. En parallèle, le concept de situation moralement problématique a seulement été décrit superficiellement dans la littérature. Pour répondre à ces lacunes dans la littérature, le projet de recherche décrit dans cette thèse avait quatre objectifs : (1) identifier des situations moralement problématiques vécues par les adultes atteints de maladies rares; (2) approfondir les situations moralement problématiques les plus significatives vécues par les adultes québécois atteints de maladies rares; (3) proposer un plan d’action de nature éthique qui soutient la résolution des trois situations moralement problématiques les plus significatives vécues par les adultes atteints de maladies rares; et (4) enrichir le concept de situation moralement problématique en précisant ses composantes. Pour répondre à ces objectifs, nous avons entrepris un projet de recherche-action participative compris d’étapes de recherche qualitatives. Nous avons formé le Groupe de travail sur l’éthique et les maladies rares pour nous appuyer dans la mise en œuvre du projet. Le groupe de travail était constitué de trois personnes atteintes de maladies rares, deux cliniciens-chercheurs, une représentante d’une association de patients, une assistante de recherche et un éthicien. Les étapes de recherche du projet étaient une revue de littérature, une collecte de témoignages sous la forme d’un sondage en ligne et le développement d’un plan d’action de nature éthique. Les membres du groupe de travail ont contribué au développement de ces étapes, à l’interprétation des résultats et à la rédaction des chapitres de résultats qui en découlent. Ces étapes de recherche révèlent que les adultes atteints de maladies rares vivent des situations moralement problématiques dans le milieu de la santé, la vie quotidienne, la carrière et les études ainsi que dans les interactions sociales et les relations interpersonnelles. Ces situations sont moralement problématiques parce qu’elles engendrent des tensions internes chez les personnes qui les vivent, contraignent leur agentivité et à l’occasion, les incitent à mobiliser des stratégies d’autonomisation pour les surmonter. Ces situations ont des causes et des répercussions affectives, elles évoluent et elles ont des impacts négatifs et positifs. Dans notre plan d’action de nature éthique, nous présentons des interventions prometteuses qui pourraient limiter l’émergence de ces situations dans le milieu de la santé. / A disease is considered rare if its prevalence is less than 1 in 2,000 people. Given the limited knowledge about these medical conditions, adults living with rare diseases struggle to be promptly diagnosed and receive appropriate treatment. This inadequacy in care causes them significant difficulties in the healthcare environment, their daily lives, their interpersonal relationships, and their careers and studies. Many of these difficulties can be qualified as morally problematic situations according to pragmatist ethics. Pragmatist ethics is a theory in ethics that recognizes the centrality of morality in human life. This theory underlines the existential importance of these situations for the people who experience them. It also appreciates their agency. Thus, it provides them with tools to better understand these situations and resolve them. Despite the significance that these situations have for those who experience them, they have not been studied previously. Moreover, the concept of the morally problematic situation has only been superficially described in the literature. To address these gaps in the literature, the research project described in this dissertation had four objectives: (1) to identify morally problematic situations experienced by adults living with rare diseases; (2) to understand in greater depth the most significant morally problematic situations experienced by adults living with rare diseases in the province of Québec; (3) to propose an ethics action plan that supports the resolution of the three most significant morally problematic situations experienced by adults living with rare diseases; and (4) to enrich the concept of the morally problematic situation by specifying its components. To meet these objectives, we undertook a participatory action research project that included qualitative research steps. We created the Ethics and Rare Diseases Working Group to support us in carrying out the project. The working group was made up of three individuals living with rare diseases, two clinician researchers, a representative of a patient association, a research assistant and an ethicist. The research stages of the project were a literature review, collecting testimonies through an online survey and the development of an ethics action plan. The members of the working group notably contributed to the development of these stages, the interpretation of the results, and the drafting of the chapters reporting these results. Our research reveals that adults with rare diseases experience morally problematic situations in the health environment, daily life, career and studies, and in social interactions and interpersonal relationships. These situations are morally problematic because they elicit internal tensions within the people who experience them, constrain their agency and, on occasion, prompt them to mobilize empowerment strategies to overcome them. These situations have causes and emotional repercussions, they evolve, and they have negative and positive impacts. In our ethical action plan, we present promising interventions that could limit the emergence of these situations in the health sector.