Cette étude, accompagnée d’un volume d’annexes, est une réflexion sur la manière d’aborder le sujet aphasique, dans les contextes médical et de réadaptation auxquels il est confronté, dès le diagnostic de son atteinte : l’aphasie, ou perte du langage acquis, touche généralement l’adulte. Puisant aux sources de la philosophie, la réflexion initiale évoque la problématique d’une éthique couvrant le parcours médical et paramédical complexe de ce type de patient, pointant aussi certains obstacles spécifiques à l’éthique médicale, psychologique ou de l’éducation. Ensuite, une définition succincte de la neuropsychologie du langage est suivie d’une présentation de l’aphasie, propos adossé à l’étude d’un cas d’aphasie mixte, comportant une anamnèse familiale (médecine narrative) et une anamnèse médicale, puis un bilan neuropsychologique, narratif également, centré sur le langage : il s’agit de montrer que, de façon plus ou moins diffuse, le sujet aphasique, dans un état de maladie chronique (séquelles durables le plus souvent) souffre d’une situation de handicap qui le conduit à un état de grande vulnérabilité. Il est fort difficile de lui proposer un suivi homogène sur l’ensemble de la chaîne du soin, et jusqu’à la fin de cette longue période de réadaptation du langage (au moins trois ans) quand sa langue maternelle est devenue langue étrangère. La didactique des langues, six fois millénaire, dont l’histoire est brièvement exposée, est le matériau pédagogique de la réadaptation proposée : préceptorat conçu et adapté au sujet, montrant l’intérêt du champ des sciences humaines et sociales, dans un parcours de soin. La prise en charge tient compte de l’état psychologique du patient, à l’identité profondément meurtrie, du bilan neuropsychologique et du bilan de langage effectués. Enfin, cette étude tend à montrer la réalité pluridisciplinaire de l’éthique médicale, dans le champ de l’aphasiologie. Elle évoque une synergie où la position du psychologue, du neuropsychologue ou de l’orthophoniste, du linguiste, didacticien des langues peuvent se rejoindre. / This study, with an annexe, is a reflection on the approach of aphasic subject, in his medical and rehabilitation contexts, from the very start of the diagnosis of his language disturb: the aphasia, or the loss of the acquired language, is generally a syndrome of adult subject. Based on the fundamentals of philosophy, the initial reflection evokes the difficulty of a homogeneous and satisfactory ethics, during the complex medical and paramedical course of this kind of patient, pointing some specific obstacles in the medical, psychological ethics or in the ethics of education. Then, a brief definition of the neuropsychology of language is followed by a presentation of the aphasia, a comment leaned on a mixed aphasia case study, containing a familial and a medical anamneses (Narrative medicine) and a neuropsychological balance assessment (narrative also), focused on the language, witch tends to show that, in a more or less diffuse way, the aphasic subject suffers from a lack of homogeneity on the set or part of the care chain, till the end of the long period of his language rehabilitation (at least three years), when his mother tongue became foreign language. The didactics of the languages, six-thousand-years-old, and its short history is briefly explained; it is the teaching aids proposed for the rehabilitation: the tutorage is especially conceived and adapted to the subject, showing the interest of the field of humanities and social sciences, in a course of care. The care takes into account the psychological state of the patient, his profoundly bruised identity, the neuropsychological balance assessment and the balance assessment of language. Finally, this study suggests the reality of the multidisciplinary field of medical ethics in the field of aphasiology. It expresses a synergy where the position of psychologist, neuropsychologist or speech pathologist, linguist, educationalist language can join.

(in English): The subject of my dissertation is the decision of the subjects to participate in the early phase of clinical trial. The aim of this disseration is to detect and understand the ethical aspects of decision making of subjects with oncological diseases to participate in the early phase of clinical trial. In the theoretical part of my dissertation, I define the field of clinical research, describe the phases of clinical research and ethical codes important for clinical research. The current ethical dilemmas related to the participation of subjects in the early phase of clinical trial, which are being discussed by the professional public, are presented. The research part contains the results of interviews with seventeen respondents whose content correlates with the aim of the research part and it is to understand the decision- making of subjects to participate in the early phase of clinical trial in terms of subjectively constructed realities, which are different for individual respondents. The results of the research show that fourteen respondents identified one of the most important aspects of the decision-making to participate in the early phase of clinical trial of the recommendation of principal investigator and trust in a physician. Twelve respondents stated the most frequent reason...

The main theme of the dissertation work are allocations of sources in regular dialysis treatment in ethical context. The aim of the work is detection, description and understanding to ethical problems forming in context with questionable allocation of sources in regular dialysis treatment. The theoretical part of the work is concentrated on mapping above mentioned problems from various point of view. By the help of analysis of pertinent literature it is referred to historical determination and social-economic context of difficult allocation of rare sources in health service, which subsequently caused development of specific ethical problems in clinical practice of dialysis treatment. Above mentioned ethical problems are discussed chronologically, namely from the first using of a dialysis device up to now, when this therapy is considered to be a standard clinical method. The practical part of the work contains results of high-quality research, the aim of which was to explore the experience of respondents with allocation of resources in regular dialysis treatment and so in ethical context. The dates for the research were obtained by the help of expert dialogues, the method of interpretative phenomenological analysis was used to the analysis of dates. The results of the research is the interpretation...

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Type 2 diabetes is a chronic disease whose incidence has increased with more than 200% during the past 20 years. The increasing number of type 2 diabetes patients could result in more patients suffering from lower quality of life and life threatening complications. Furthermore, the growing need of care will increase the load on healthcare. To counteract this effect, digital tools could be used to put more care responsibility on the patient.  The aim of this project was to find and implement the relevant features for a digital type 2 diabetes tool for newly diagnosed patients. The final goal was to encourage self-care, reduce anxiety and thus improve quality of life, while decreasing the risk of complications. The research process of this project consisted of five phases: literature study (to find relevant features and their clinical evidence), interviews (to find the desires of patients and practitioners), data analysis (to prioritise features), development of the features and evaluation of the tool.  The results showed that important features were documentation of blood glucose measurements, patient education, data transfer, communication and care plan overview, but even more importantwas the possibility to individualise the tool for different patients. The evaluation indicated that a clear care plan overview that was easy to understand could help the patient prioritise care activities. Furthermore, patients could be encouraged by reminders, seeing improvements and having continuous communication with healthcare. It was found that for positive clinical outcomes, high usability is essential. To reach patient acceptance the tool must be relevant and easy to use. It must also give valuable output, such as decision support for self-care or new knowledge. To reach practitioner acceptance the tool should be based on evidence based methods and integrate well with existing systems.  Finally it was concluded that the knowledge and technology needed to build a successful tool is already present, they only need to be put together and formulated in a way which is understandable and useful for both patients, caregivers and developers. / Diabetes typ 2 är en kronisk sjukdom vars incidens har ökat med mer än 200% de senaste 20 åren. Det stigande antalet patienter med diabetes typ 2 kan leda till att fler patienter blir lidande av lägre livskvalitet och livshotande komplikationer. Dessutom ökar det stigande vårdbehovet belastningen på vården. För att motverka denna effekt kan digitala verktyg utvecklas så att mer ansvar kan läggas på patienten. Syftet med detta projekt var att hitta och implementera relevanta funktioner för ett digitalt verktyg för nydiagnostiserade patienter med diabetes typ 2. Målet var att uppmuntra egenvård, minska oro och därmed öka livskvaliteten samt minska risken för komplikationer. Projektets forskningsprocess bestod av fem faser: litteraturstudie (finna relevanta funktioner och deras evidens), intervjuer (kartlägga krav från patienter och vårdgivare), dataanalys (prioritera funktioner), utveckling av funktioner i HOPE platform och slutligen utvärdering av verktyget i HOPE platform. Resultaten visade att dokumentation av blodglukosmätningar, patientutbildning, dataöverföring, kommunikation och vårdplansöversikt var viktiga funktioner, men ännu viktigare var möjligheten att individanpassa verktyget för varje patient. Utvärderingen indikerade att en tydlig vårdplansöversikt som är enkel att förstå hjälper patienten att prioritera de viktigaste vårdaktiviteterna. Vidare kan patienter motiveras av påminnelser, att se förbättring och att ha kontinuerlig kontakt med vården. Det konstaterades att hög användbarhet är nödvändig för att uppnå positiva kliniska effekter. För att nå acceptans hos patienterna måste verktyget vara relevant, enkelt att använda och ge något värdefull tillbaka, så som beslutsstöd för egenvård eller ny kunskap. För att nå acceptans hos vårdgivarna bör verktyget baseras på evidensbaserade metoder och vara kompatibelt med nuvarande system. Slutligen drogs slutsatsen att kunskapen och tekniken för att skapa ett lyckat verktyg redan finns, men att kraven måste sammanställas och formuleras på ett sätt som är förståeligt och användbart för både patienter, vårdgivare och utvecklare.

(in English): The subject of my dissertation is the decision of the subjects to participate in the early phase of clinical trial. The aim of this disseration is to detect and understand the ethical aspects of decision making of subjects with oncological diseases to participate in the early phase of clinical trial. In the theoretical part of my dissertation, I define the field of clinical research, describe the phases of clinical research and ethical codes important for clinical research. The current ethical dilemmas related to the participation of subjects in the early phase of clinical trial, which are being discussed by the professional public, are presented. The research part contains the results of interviews with seventeen respondents whose content correlates with the aim of the research part and it is to understand the decision- making of subjects to participate in the early phase of clinical trial in terms of subjectively constructed realities, which are different for individual respondents. The results of the research show that fourteen respondents identified one of the most important aspects of the decision-making to participate in the early phase of clinical trial of the recommendation of principal investigator and trust in a physician. Twelve respondents stated the most frequent reason...

No description available.

Au Québec, les personnes ayant une ascendance géographique des régions du Saguenay-Lac- Saint-Jean, de Charlevoix et de la Haute-Côte-Nord ont une prévalence plus élevée que le reste de la population québécoise d’être porteurs de certaines maladies héréditaires récessives. Depuis 2018, une offre de tests de porteurs en ligne est proposée par le Ministère de la Santé et des Services Sociaux du Québec pour quatre maladies autosomiques récessives : l’acidose lactique congénitale, la tyrosinémie héréditaire de type 1, la neuropathie sensitivomotrice avec ou sans agénésie du corps calleux et l’ataxie récessive spastique de Charlevoix-Saguenay. Ce même dépistage peut être offert en contexte clinique, chez des adultes éligibles lors de consultations en lien avec un désir de grossesse ou une grossesse en cours. Les objectifs de ce projet de recherche sont (1) de décrire l’expérience des patients ayant eu accès au dépistage de porteurs en contexte clinique et (2) d’identifier, analyser et comparer les enjeux éthiques soulevés par un dépistage de porteurs dans le cadre d’un programme structuré versus un dépistage de porteurs en contexte clinique. Pour ce faire, une série de questionnaires destinée aux patients auxquels le dépistage a été offert lors d’un rendez-vous en clinique a été mise en place et une analyse éthique à l’aide d’un cadre éthique de santé publique a été réalisée. À la lumière de ce projet, l’autonomie décisionnelle du patient est mise de l’avant. Des pistes de réflexion ainsi que des recommandations ont été développées afin de répondre au mieux aux besoins des personnes qui considèrent avoir recours à des tests de porteurs. / In Quebec, people with geographical ancestry from the Saguenay-Lac-Saint-Jean, Charlevoix and Haute-Côte-Nord regions have a higher prevalence than the rest of the Quebec population of being carriers of specific recessive hereditary diseases. Since 2018, online carrier testing has been offered by the Ministère de la Santé et des Services Sociaux du Québec for four autosomal recessive diseases: congenital lactic acidosis, hereditary tyrosinemia type 1, sensitivomotor neuropathy with or without agenesis of the corpus callosum and Charlevoix-Saguenay recessive spastic ataxia. This same screening can be offered in a clinical setting, to eligible adults during consultations related to a pregnancy desire or a pregnancy in progress. The objectives of this research project are (1) to describe the experience of patients who have had access to carrier screening in a clinical setting and (2) to identify, analyze and compare the ethical issues raised by carrier screening in a structured program versus carrier screening in a clinical setting. To this end, a series of questionnaires was administered to patients who were offered screening during a clinic appointment, and an ethical analysis was carried out using a public health ethics framework. In the light of this project, the patient's decision-making autonomy is emphasized. A number of ideas and recommendations have been developed to best meet the needs of people considering carrier testing.

No description available.

No description available.