Introdução: Atualmente no sistema de saúde brasileiro, como integrante da atenção primária, existem as Unidades Básicas de Saúde com duas formas distintas de atuação. Uma das formas, aqui denominada como modelo “tradicional”, refere-se aos atendimentos previamente agendados, onde os profissionais atendem à demanda espontânea, puramente assistencial e curativa. Outra forma de atuação, presente nas Unidades pesquisadas é a Estratégia de Saúde da Família, constituída por uma equipe multiprofissional que atua em território de abrangência determinados, a estes territórios pertencem todos os usuários que ali residem, bem como tudo que ali acontece. Esses são os ambientes para a ação desta equipe, espaços de aprendizagem em saúde onde a troca e a construção do conhecimento devem permear, buscando mudanças de hábitos/atitudes, onde cada usuário possa construir ‘novos olhares’ frente aos cuidados consigo mesmo e com os outros. Na luz desta ideia, dentro das propostas de intervenção das equipes de estratégia de saúde da família e também do modelo tradicional de atuação, existe a grande dificuldade observada e também verbalizada pelos profissionais no que se refere ao trabalho com educação em saúde. Existe uma fala constante de que é muito difícil realizar este tipo de proposta e que os usuários têm dificuldades de aderir ao que é apresentado. Objetivo: O objetivo desta pesquisa, é poder conhecer o quanto essas questões de educação em saúde permeiam o trabalho das equipes de saúde do município de Canoas/RS, o quanto elas se mobilizam por este tipo de intervenção, qual o conhecimento sobre o assunto verificando a presença nos cursos de graduação, o que fazem para conseguir mudar realidades e assim promover saúde atuando em equipes, em ambientes diversificados e não apenas no consultório. Método: Este trabalho utilizou como metodologia a aplicação de um instrumento de coleta de dados para todos os profissionais de nível superior de todas as Unidades Básicas de Saúde do município. A análise de dados caracterizou-se por ser quantitativa e permitiu o conhecimento da realidade, da dimensão de como os profissionais atuam com educação em saúde nos mais diferentes aspectos. Como resultado percebeu-se um bom conhecimento sobre o tema, o que possibilita a elaboração de programas a serem construídos junto com todos os envolvidos para que possam aprimorar e tornar mais efetivas essas práticas. Fica a ideia de continuidade desta pesquisa, estruturando estes programas e avaliando sua efetividade e eficácia. Resultados: Dos 191 questionários distribuídos 103 retornaram preenchidos. / Introduction: Nowadays, in the Brazilian healthcare system, as a member of primary attention, there are Basic Units of Health, with two distinct approaches. One of them, called as “traditional model”, refers to previously scheduled meetings, which professionals works in this spontaneous demand, purely for helping and cure. Another method of work, existed into researched Units, is the Family Health Strategy, composed by a multidisciplinary team, acting in a limited territory, regards with all the people that living there, as well as all the things that happens in such territory. These are the environments of action from these teams, health learning spaces where the interchange and the construction of knowledge must resides, in the search of habit changes, where each user can construct “new sights” about yourself care, as well as with others. With this idea in mind, considering the intervention purposes from Family Health Strategy teams, as well as from the traditional model, there is a difficulty observed and registered from health professionals, about health education work. There is a consensus about the difficulty related to this kind of proposed work, and the users from them hardly adhere to the proposed topics. Goal: The goal of this research is the knowledge about such questions from health education into the work of health teams in Canoas city, as well as the mobilization of the people about such kind of intervention, the knowledge about the subject into the university courses, the actions taken to the change of reality and, then, promote health through the acting of teams, considering the diversity of environments, not only in health centers. Methodology: This research uses as a methodology a data search instrument for all graduate level professionals, from all the Health Basic Units of such city. The data analysis is characterized in a quantitatively manner, permitting the knowledge of the current reality, as well as the dimension of how such professionals act with health education in several scenarios. As a result, it is perceived a good knowledge about the subject, which makes possible the construction of programs, together with all the people involved, turning possible the improvement of such practices. Finally, the idea of continuity of this research is registered, through the structure of such programs and evaluation of its effectivity and efficiency. Results: From 191 surveys sent to the public involved, there were 103 surveys answered.

Introdução: Atualmente no sistema de saúde brasileiro, como integrante da atenção primária, existem as Unidades Básicas de Saúde com duas formas distintas de atuação. Uma das formas, aqui denominada como modelo “tradicional”, refere-se aos atendimentos previamente agendados, onde os profissionais atendem à demanda espontânea, puramente assistencial e curativa. Outra forma de atuação, presente nas Unidades pesquisadas é a Estratégia de Saúde da Família, constituída por uma equipe multiprofissional que atua em território de abrangência determinados, a estes territórios pertencem todos os usuários que ali residem, bem como tudo que ali acontece. Esses são os ambientes para a ação desta equipe, espaços de aprendizagem em saúde onde a troca e a construção do conhecimento devem permear, buscando mudanças de hábitos/atitudes, onde cada usuário possa construir ‘novos olhares’ frente aos cuidados consigo mesmo e com os outros. Na luz desta ideia, dentro das propostas de intervenção das equipes de estratégia de saúde da família e também do modelo tradicional de atuação, existe a grande dificuldade observada e também verbalizada pelos profissionais no que se refere ao trabalho com educação em saúde. Existe uma fala constante de que é muito difícil realizar este tipo de proposta e que os usuários têm dificuldades de aderir ao que é apresentado. Objetivo: O objetivo desta pesquisa, é poder conhecer o quanto essas questões de educação em saúde permeiam o trabalho das equipes de saúde do município de Canoas/RS, o quanto elas se mobilizam por este tipo de intervenção, qual o conhecimento sobre o assunto verificando a presença nos cursos de graduação, o que fazem para conseguir mudar realidades e assim promover saúde atuando em equipes, em ambientes diversificados e não apenas no consultório. Método: Este trabalho utilizou como metodologia a aplicação de um instrumento de coleta de dados para todos os profissionais de nível superior de todas as Unidades Básicas de Saúde do município. A análise de dados caracterizou-se por ser quantitativa e permitiu o conhecimento da realidade, da dimensão de como os profissionais atuam com educação em saúde nos mais diferentes aspectos. Como resultado percebeu-se um bom conhecimento sobre o tema, o que possibilita a elaboração de programas a serem construídos junto com todos os envolvidos para que possam aprimorar e tornar mais efetivas essas práticas. Fica a ideia de continuidade desta pesquisa, estruturando estes programas e avaliando sua efetividade e eficácia. Resultados: Dos 191 questionários distribuídos 103 retornaram preenchidos. / Introduction: Nowadays, in the Brazilian healthcare system, as a member of primary attention, there are Basic Units of Health, with two distinct approaches. One of them, called as “traditional model”, refers to previously scheduled meetings, which professionals works in this spontaneous demand, purely for helping and cure. Another method of work, existed into researched Units, is the Family Health Strategy, composed by a multidisciplinary team, acting in a limited territory, regards with all the people that living there, as well as all the things that happens in such territory. These are the environments of action from these teams, health learning spaces where the interchange and the construction of knowledge must resides, in the search of habit changes, where each user can construct “new sights” about yourself care, as well as with others. With this idea in mind, considering the intervention purposes from Family Health Strategy teams, as well as from the traditional model, there is a difficulty observed and registered from health professionals, about health education work. There is a consensus about the difficulty related to this kind of proposed work, and the users from them hardly adhere to the proposed topics. Goal: The goal of this research is the knowledge about such questions from health education into the work of health teams in Canoas city, as well as the mobilization of the people about such kind of intervention, the knowledge about the subject into the university courses, the actions taken to the change of reality and, then, promote health through the acting of teams, considering the diversity of environments, not only in health centers. Methodology: This research uses as a methodology a data search instrument for all graduate level professionals, from all the Health Basic Units of such city. The data analysis is characterized in a quantitatively manner, permitting the knowledge of the current reality, as well as the dimension of how such professionals act with health education in several scenarios. As a result, it is perceived a good knowledge about the subject, which makes possible the construction of programs, together with all the people involved, turning possible the improvement of such practices. Finally, the idea of continuity of this research is registered, through the structure of such programs and evaluation of its effectivity and efficiency. Results: From 191 surveys sent to the public involved, there were 103 surveys answered.

Introdução: A educação em saúde é considerada essencial no controle da asma. A implantação de um programa de educação (PE) com automanejo tem impacto positivo na melhora da qualidade de assistência em asma. Entretanto, os benefícios de um PE ainda são controversos em função das barreiras estruturais. Objetivo: Avaliar o controle clínico de pacientes submetidos a um programa de automanejo associado automonitorização e auto-tratamento comparando-os com dois grupos em atendimento ambulatorial de rotina, com e sem aplicação de um PE. Ainda, mensurar o conhecimento da doença e técnica inalatória, os índices de qualidade de vida, sintomas de ansiedade e depressão e a alfabetização funcional em saúde. Métodos: Trata-se de um estudo aleatorizado, controlado, de grupos paralelos, alocados em três grupos: grupo controle (GC), educação (GE) e automanejo (GA) durante um período de doze meses. Foram incluídos 110 pacientes com asma persistente moderada e grave. O PE foi oferecido para pequenos grupos nos dias de consulta, e consistiu de aulas expositivas divididas em módulos: (1) fisiopatologia e controle ambiental; (2) sinais/sintomas da asma; (3) tratamento e treinamento da técnica inalatória. O GA ainda recebeu um diário de sintomas e um plano de ação individualizado por escrito. Para avaliar o controle da doença foi utilizado a média de pontos do teste de controle da asma (ACT) e o percentual de pacientes com escore 20. Outros questionários incluídos foram: conhecimento sobre a doença (QCA), qualidade de vida relacionada à asma (AQLQ-s), escala hospitalar de ansiedade e depressão (HADS) e o teste de alfabetização funcional (s-TOFHLA). Resultados: Em dois anos, 84 pacientes completaram o estudo. Os grupos eram homogêneos em relação às características basais. A média do ACT aumentou de 14 para 18 pontos, sendo que 48% dos pacientes do GA atingiram o controle da asma. Os GA e GE aumentaram o conhecimento da doença e técnica inalatória para 100%. E os sintomas de ansiedade diminuíram em 14% e 12%, respectivamente. O escore do AQLQ-s foi clinicamente relevante com aumento significativo maior que 0,5 pontos nos dois grupos. O s-TOFLHA foi classificado como alfabetização em saúde adequada com escore médio de 76 pontos. Conclusões: PE associado automanejo durante a rotina de atendimento ambulatorial mostrou impacto relevante sobre a melhora clínica de pacientes portadores de asma moderada e grave. O PE aumentou o conhecimento sobre a doença e tratamento medicamentoso, com melhora da qualidade de vida relacionada à saúde e os sintomas de ansiedade. Nesta população os pacientes apresentaram adequada alfabetização funcional em saúde. / Background: Health education is considered essential in asthma control. The implementation of an education program (EP) with self-management has a positive impact on improving the quality of care in asthma. However, the benefits of an EP are still controversial according of structural barriers. Objective: Evaluate the clinical control of patients submitted a self-management program associated with selfmonitoring and self-treatment comparing with two groups during the routine outpatient visits with and without the EP application. Also, measure the disease knowledge and inhalation technique, the indices of quality of life, symptoms of anxiety and depression and functional health literacy. Methods: This was a randomized study, controlled, divided into three groups: control group (CG), education (EG) and self-management (AG) during twelve months. The study included 110 patients with moderate and severe persistent asthma. The EP was applied to small groups on outpatient visit days, consisted of lectures divided into three parts: (1) pathophysiology and environmental control; (2) asthma symptoms; (3) treatment and training in the inhalation technique. The AG also received a symptoms diary card and written personal asthma action plan. Disease control was measured by the score of asthma control test (ACT) and the percentage of patients with scores 20. Other questionnaires included: disease knowledge (UDQ), asthma quality of life (AQLQ-s), hospital anxiety and depression scale (HADS) and functional literacy health test (s- TOFHLA). Results: In two years, 84 patients completed the study. Groups were similar in baseline characteristics. The mean ACT increased from 14 to 18 points, with 48% of patients in the AG achieved better control of asthma. The AG and EG increased disease knowledge and inhalation technique up to 100%. And the anxiety symptoms decreased 14% and 12%, respectively. The AQLQ-s score was clinically relevant with a significant increase of more than 0.5 points in both groups. The s- TOFLHA was classified as adequate health literacy with a mean score of 76 points. Conclusions: EP associated with self-management during routine outpatient visit showed significant impact on the clinical improvement in patients with moderate to severe asthma. The EP increased knowledge about the disease and drug treatment, with improvement in quality of life and symptoms of anxiety. In this population patients had adequate functional health literacy.

Evidence suggests that the prevalence of certain non-communicable diseases, such as hypertension, is increasing rapidly, and that patients with these diseases are making significant demands on the health services of the nations in sub-Saharan Africa. However, these countries also face other health-related challenges such as communicable diseases and underdevelopmentrelated diseases. Developing countries like South Africa have limited resources, in terms of man power and financial capital, to address the challenges that they are facing. Non-communicable diseases cannot be ignored and since health care providers cannot meet the challenges, it is worthwhile to empower patients to be involved in the management of their conditions. Patient education is a tool that can be used to enable patients to manage their chronic conditions and thereby reduce the morbidity and mortality rates of these conditions. The aim of this study was to investigate the effect of a patient education intervention on participants’ levels of knowledge about hypertension and its therapy, beliefs about medicines and adherence to anti-hypertensive therapy. The intervention consisted of talks and discussions with all the participants as one group and as individuals. There was also written information given to the participants. Their levels of knowledge about hypertension and its therapy were measured using one-on-one interviews and self-administered questionnaires. Beliefs about medicines were measured using the Beliefs about Medicines Questionnaire (BMQ) whilst adherence levels were measured using pill counts, elf-reports and prescription refill records. The participants’ blood pressure readings and body mass indices were also recorded throughout the study. The parameters before and after the educational intervention were compared using statistical analyses. The participants’ levels of knowledge about hypertension and its therapy significantly increased whilst their beliefs about medicines were positively modified after the educational intervention. There were also increases, though not statistically significant, in the participants’ levels of adherence to anti-hypertensive therapy. Unexpectedly, the blood pressure readings and body mass indices increased significantly. The participants gave positive feedback regarding the educational intervention and indicated a desire for similar programmes to be run continuously. They also suggested that such programmes be implemented for other common chronic conditions such as asthma and diabetes. This study proved that patient education programmes can be implemented to modify patients’ levels of knowledge about their conditions and the therapy, beliefs about medicines and adherence to therapy. However, such programmes need to be conducted over a long period of time since changes involving behaviour take a long time.

Abstract The purpose of this study was to describe how patient education is operating in special health care and in primary care and also participants’ experiences of development work on patient education. The aim was to produce information on the implementation of patient education and the factors affecting it and the development of patient counseling between special and primary care nursing staff cooperation. The study consisted of three sub studies. The first study described above, what kind of the surgery patient education was as assessed by nursing staff, and what it is explained. In the second study was described, what kind of patient education was in primary care as assessed by nursing staff, and what it is explained. Furthermore in both studies was described by nursing staff what kind of development proposals they put in. The data was collected using a structured questionnaire (© MR / HK, 2003), from surgical nursing staff (n = 203) and nursing staff working in primary health care (n =  377). The data was analyzed using basic and multiple variable statistical methods, as well as open questions, the deductive content analysis. The third study described the experiences of nursing staff of development work on patient education. The data was collected by interviewing nursing staff involved in the development (n =  24) and were analyzed using inductive content analysis. The development work focused on patients’ education on patients with coronary artery disease, diabetic foot ulcers, cancer, joint replacement, stroke, and chronic obstructive pulmonary disease, and it was carried out in primary and special health care nursing staff cooperation. Nursing staff had a good knowledge and skills and attitudes towards patient education were positive and nursing staff was counseling patient-centered and take into account the patient's feelings. Nursing staff should develop patient education methods. Patient education should have more time, equipment, and facilities. Experiences of development work can be described by categories the nature of development work and together we are more effective. The development work is strengthening the know-how, but it requires the participants' motivation and commitment, teamwork skills, openness and mutual respect. Development cooperation increases professional and inter-organizational co-operation, and improves the information flow in the patient care process. The results can be utilized in nursing, nursing education and patient education development. / Tiivistelmä Tutkimuksen tarkoituksena oli kuvata potilasohjauksen toimintaedellytyksiä kirurgisessa erikoissairaanhoidossa ja perusterveydenhuollossa sekä hoitohenkilöstön kokemuksia potilasohjauksen kehittämisestä. Tavoitteena oli tuottaa tietoa potilasohjauksen toimintaedellytyksistä ja siihen vaikuttavista tekijöistä sekä potilasohjauksen kehittämisestä perusterveydenhuollon ja erikoissairaanhoidon hoitohenkilöstön yhteistyönä. Tutkimus koostui kolmesta osatutkimuksesta. Ensimmäisessä osatutkimuksessa kuvailtiin, millaista oli potilaan ohjaus erikoissairaanhoidossa kirurgisen hoitohenkilöstön arvioimana ja toisessa osatutkimuksessa kuvailtiin millaista potilaan ohjaus oli perusterveydenhuollon hoitohenkilöstön arvioimana ja mitkä asiat olivat siihen yhteydessä. Lisäksi kuvailtiin millaisia ehdotuksia hoitohenkilöstö esitti potilasohjauksen kehittämiseksi. Aineisto kerättiin strukturoidulla kyselylomakkeella (© MR/HK, 2003) vuonna 2003 kirurgiselta (n =  203) ja vuonna 2006 perusterveydenhuollon (n =  377) hoitohenkilöstöltä ja analysoitiin tilastollisilla perus- ja monimuuttujamenetelmillä sekä avoimien kysymysten osalta deduktiivisella sisällön analyysillä. Kolmannessa osatutkimuksessa kuvailtiin hoitohenkilöstön kokemuksia potilasohjauksen kehittämistyöstä. Aineisto kerättiin vuonna 2007 haastattelemalla kehittämistyöhön osallistunutta hoitohenkilöstöä (n =  24) ja analysoitiin induktiivisella sisällön analyysillä. Kehittämistyö kohdentui sepelvaltimotautia ja diabeettista jalkahaavaa sairastavien sekä syöpä-, tekonivel-, aivoinfarkti- ja keuhkoahtaumatautipotilaiden ohjaukseen ja se toteutettiin erikoissairaanhoidon ja perusterveydenhuollon hoitohenkilöstön yhteistyönä. Hoitohenkilöstön tiedot ja taidot olivat pääosin hyvää tasoa ja asenteet potilasohjausta kohtaan olivat myönteiset. Hoitohenkilöstö arvioi toteuttavansa ohjausta potilaslähtöisesti ja tunneulottuvuuden huomioiden. Ohjausmenetelmien monipuolisempaan käyttöön olisi kiinnitettävä enemmän huomiota. Kehittämistarpeita oli myös ohjaukseen käytettävissä olevassa ajassa, välineistössä ja ohjaustiloissa. Kokemukset kehittämistyöstä jakaantuivat pääluokkiin kehittämistyön luonne ja kehittämistyön merkitys. Kehittämistyö vahvistaa ohjausosaamista, mutta vaatii osallistujilta motivaatiota ja sitoutumista, yhteistyökykyä, avoimuutta ja keskinäistä arvostusta. Kehittämisyhteistyö lisää ammattilaisten ja organisaatioiden välistä yhteistyötä sekä parantaa tiedonkulkua potilaan hoitoprosessissa. Tuloksia voidaan hyödyntää hoitotyössä, hoitotyön opetuksessa ja potilasohjauksen kehittämistoiminnassa.

Le traitement des maladies chroniques passe par plusieurs axes. L’un est technique et indispensable, issu de « l’évidence base médecine », il est biomédical et largement enseigné dans les facultés de médecine. L’autre est plus récent, moins présent dans les enseignements, et issu du « share decision making ». Ce dernier semble mieux considérer les valeurs du patient mais reste assujettie aux preuves biomédicales et investigations cliniques. L’abord du patient nécessite une interdépendance de ces deux approches et donc une part liée à l’éducation. La relation au patient se trouve modifiée par cette approche thérapeutique et impose au soignant un positionnement professionnel différent et requérant de nouvelles compétences. Il est intéressant de questionner au travers d’une étude menée dans deux milieux socio-culturels différents la possibilité d’un abord didactique des ateliers d’ETP. Cette approche, est menée dans un premier temps, par l’étude comparée des conceptions des patients et des soignants au cours de laquelle nous avons relevé des différences de conceptions non pas liées au macrocontexte mais plutôt au microcontexte et entre les soignants et les patients. Dans un deuxième temps, l’utilisation de concepts didactiques issus de la didactique des sciences, des travaux de Gérard Sensévy et de la littératie en santé va nous permettre de dégager des indicateurs et paramètres pouvant classer les différents types d’ateliers d’ETP et guider les soignants-formateurs au cours de leurs interventions éducatives. / Chronic illnesses can be treated along several axes.One of these is technical and indispensable, coming for the "evidence base medecine". It is biomedical and largely taught in medical schools. The other is more recent, less commonly taught and coming from "share decision making." The latter better considers the values of the patient but remains dependent on biomedical proof and chemical investigation. The patient approach requires an interdependence of the two approaches and is therefore, in part linked to education .The relation to the patient is modified by this therapeutic approach and requires and the caretaker to have a different professional position and requires new skills. It is interesting to question through a study lead in two different socio-cultural backgrounds the possibility of a didactic approach of the ETP workshops.Firstly, this approach, by the comparative study of conceptions of patients and caretakers during which we noticed different conceptions not only linked to the macro context but rather to the micro context between the two former.Secondly, the use of didactic concepts coming from the teaching of science from the works of Gérard Sensévy and the health literacy that allows us to identify the indicators and parameters.Allowing us to classify different types of ETP workshops and guide the care professionnal along their educational interventions.

En France, les programmes d’éducation thérapeutique du patient (ETP) à destination de l’adolescent diabétique de type 1 visent à rendre l’adolescent autonome pour gérer sa maladie et son traitement. En s’appuyant sur la théorie sociale cognitive de Bandura, les effets des activités éducatives de l’ETP devraient conduire au renforcement du sentiment d’efficacité personnelle, couplé à d’autres facteurs socio-cognitifs, favorisant l’adhésion thérapeutique de l’adolescent, une meilleure qualité de vie et un meilleur équilibre glycémique.Les travaux de thèse se sont déclinés en trois buts principaux :1) Réaliser une clarification de concept sur les spécificités de l’ETP dans un contexte pédiatrique, à partir d’une analyse de la littérature selon la méthode de Rogers (2000).2) Réaliser une revue systématique ayant pour objectif de décrire le contenu et les effets des programmes éducatifs de 2009 à 2014 sur le contrôle glycémique, la gestion de la maladie, les critères psychosociaux des enfants et des adolescents diabétiques de type 1, et d’évaluer la concordance de ces programmes avec les recommandations de l’ISPAD.3) Décrire l’évolution du profil socio-cognitif et clinique sur trois mois d’une cohorte d’adolescents diabétiques ayant participé à un programme d’ETP en France.Ces travaux ont permis de développer les connaissances sur le concept d’ETP dans le contexte pédiatrique, sur l’état de la recherche concernant les programmes éducatifs structurés dans le diabète de type 1 de l’enfant et de l’adolescent, mais aussi de mettre en application une étude pilote dans le contexte de l’ETP en France. / In France, therapeutic patient education programs (ETP) to adolescents with type 1 diabetes are designed to make the teenager to self-manage their disease and its treatment. Based on social cognitive theory of Bandura, the effects of educational activities should lead to the strengthening of self-efficacy, coupled with other socio-cognitive factors, favoring the therapeutic adherence of teenager, a better quality of life and improved glycemic control.The thesis work was broken down into three main goals:1) Perform concept clarification on the specificitiess of TpE in a pediatric context, from a literature analysis method according to Rogers (2000).2) To conduct a systematic review aimed to describe the content and effects of educational programs from 2009 to 2014 on glycemic control, disease management, psychosocial criteria of children and adolescents with type 1 diabetes, and assess the consistency of these programs with the recommendations of the ISPAD.3) Describe the evolution of the socio-cognitive and clinical profile on three months of a diabetic adolescent cohort participated in an ETP in France.This work helped to develop knowledge on the concept of TPE in the pediatric context, the state of research on structured educational programs in type 1 diabetes in children and adolescents, but also implement a pilot study in the context of the ETP in France

A starting point for this thesis is that patients’ learning has not received sufficient attention and thus has not featured in the study programmes in the field of caring. Focus has instead been placed on patients being given information and advice about their illness and treatment, advice that they are then expected to comply with. Too little attention has been paid to the individual who lives with his/her illness and who should be considered to have significant experiences. The overall aim has been to analyze and describe the phenomenon of learning to live with long-term illness as well as to develop a didactic model that can help carers to support patients’ learning processes. The theoretical perspective in the thesis is lifeworld theory, which permeates ontological, epistemological and methodological standpoints and also the view on learning. The design and carrying out of the research is based on a reflective lifeworld approach. The empirical study consists of interviews with people who live with different types of long-term illnesses. The learning that follows life with a long-term illness is generated in such a way as to respond to the will to live the well-known everyday life. A greater understanding of the empirical results has been achieved by a lifeworld philosophical elucidation, with a particular focus on learning turning points and the importance of reflection. Based on the empirical results, the lifeworld philosophical elucidation and the caring science lifeworld didactics a didactic model has been formulated. This model is entitled: The challenge – to take charge of one’s life with long-term illness. The model contains four theses: 1) Confronting one’s life situation and challenging to make a change, 2) Positioning oneself at a distance when creating a new whole, 3) Developing self-consciousness and taking responsibility, 4) Making learning visible with the aim of providing development and balance in life. The results in the thesis show that a genuine learning is something that differs from the learning of information and that the learning must be supported at an existential level based on the sufferer’s situation and for a long period of time.

Introduction and background Recruitment to cancer clinical trials needs to be improved, as does patient understanding about clinical trials, to enable patients to make an informed choice about whether or not to take part. The main reason that clinically eligible patients do not take part in clinical trials is because they refuse; poor understanding of the research has been associated with patient refusal. Audiovisual patient information (AVPI) has been shown to improve knowledge/understanding in various areas of practice but there is limited information about its effect in the cancer clinical trial setting, particularly in relation to recruitment rates. Understanding the research is necessary for informed consent, and it was hypothesised that if patient understanding about clinical trials was increased with AVPI, then this could result in a reduction in the number of patients refusing clinical trials, and therefore provide an ethical approach to improving recruitment. This study aimed to test the impact of an audiovisual patient information intervention on recruitment to randomised cancer clinical trials (refusal rates), patient understanding of the information given, and levels of anxiety. Reasons for patients’ decisions about trial participation were also assessed. Method An AVPI intervention was developed that aimed to address the common misconceptions associated with randomisation and clinical equipoise, as well as improve patient understanding generally of randomised cancer trials, and of other core clinical trial informational requirements, such as voluntariness. Patients were randomised to receive either AVPI in addition to the standard trial-specific written information, or the written information alone. A new questionnaire was developed to assess patient understanding (also referred to as knowledge) in the randomised trial setting and, following testing with patients and research nurses, this was shown to be reliable and valid. Patients completed self-report questionnaires to assess their understanding (new knowledge questionnaire) and anxiety (Spielberger State-Trait Anxiety Inventory), at baseline and after they had made their decision about clinical trial entry, when their perceptions of the intervention, as well as factors contributing to their decision were also determined (this tool incorporated Jenkins and Fallowfield’s (2005) questionnaire which assessed reasons for accepting and declining randomised cancer trials). Results A total of 173 patients with breast cancer (65%), colorectal cancer (32%) and lung cancer (3%) were entered into the main study. The median age was 60 (range 37-92 years). There was no difference in clinical trial recruitment rates between the two groups: 72.1% in the AVPI group and 75.9% in the standard information group. The estimated odds ratio for refusal (intervention/no intervention) was 1.19 (95% ci 0.55-2.58, p=0.661). Knowledge scores increased more in the intervention group compared to the standard group (U= 2029, p=0.0072). The change in anxiety score between the arms was also statistically significant (p=0.011) with anxiety improving in the intervention arm more than in the no-intervention arm. The estimated difference in the median anxiety change score between the groups is –4.6 (95% ci –7.0 to –2.0). Clinical trial entry was not influenced by tumour type, stage of cancer, age, educational qualifications or previous research experience, however, there was a modest association with deprivation status (p=0.046) where more affluent patients were the least likely to consent to a trial. Educational qualifications and stage of cancer were independently associated with knowledge: patients who were better educated had higher levels of knowledge about randomised trials, and patients who had limited stage of cancer had higher baseline knowledge than patients with advanced cancer. Acceptability of the intervention was high with 93% of those who watched it finding it useful, and 42% stating that it made them want to take part in the clinical trial. Personal benefit and altruism were key motivating factors for clinical trial participation, with reasons for refusal being less clear. Discussion and conclusions Although the potential for AVPI to increase clinical trial recruitment rates was highlighted in the literature, in this study, AVPI was not shown to have any effect on refusal rates to randomised cancer trials. However, by improving patient understanding prior to decision making, AVPI was shown to be a useful addition to the consent process for randomised cancer trials. AVPI addresses the fundamental ethical challenges of informed consent by improving patient understanding, and supports the ethical framework integral to Faden and Beauchamp’s (1986) theory of informed consent. The new knowledge questionnaire was shown to be a sensitive and effective instrument for measuring understanding of randomised clinical trials in the cancer setting, although it would benefit from further testing. The AVPI appears to reduce anxiety at the decision making time point and has been shown to be an acceptable medium for patients. This study confirms existing findings from studies assessing factors affecting decision making, with personal benefit and altruism being key motivating factors, and reasons for refusal being less clear. The need for further qualitative work in this area is highlighted to gain a deeper understanding of what is important to patients, in terms of why they refuse clinical trial participation. Implications for practice and further research Several implications for practice have been identified, including using AVPI as part of the standard information package for patients considering randomised cancer trials, and focussing on patient and staff education in this area. The knowledge questionnaire could be introduced to routine practice as a tool to determine patient understanding prior to decision making, allowing clinicians the opportunity to correct any misconceptions prior to consent. Further research focussing on AVPI specific to individual trials would be helpful, to determine if a more customised approach would be of benefit in terms of clinical trial recruitment. The importance of studying other aspects of the consent process such as the interaction between the clinician and the patient, in addition to more detailed exploration of the factors affecting patients’ decisions were highlighted.

Il existe en médecine deux modèles complémentaires de prise en charge du patient : D’une part, le biomédical qui procède de l’application en médecine de la méthode analytique des sciences exactes. Schématiquement, « être malade » se réduit à avoir une maladie, avoir « une entité morbide » à l’intérieur de l’organisme que le professionnel de santé devra identifier. Ce modèle, classiquement enseigné dans les facultés de médecine est limité par le fait qu’il ne prend pas en compte l’individu dans sa globalité, mais se limite à l’organe, lui-même considéré comme un objet. D’autre part, le modèle biopsychosocial prend en compte les interrelations entre les aspects biologiques, psychologiques et sociaux de la maladie. Selon ce modèle, l’évolution clinique du patient est déterminée, non pas par les seuls facteurs biologiques, mais aussi par les formes de vie collective et les événements psychosociaux, co-constitutifs de la vie du sujet, ainsi que par les structures et les valeurs qui caractérisent la communauté. Depuis quelques années, les patients revendiquent une modification de la logique biomédicale de leur prise en charge et souhaitent être remis au cœur des préoccupations par l’adoption d’une logique biopsychosociale. Les avancées scientifiques de la médecine dite « moderne » laissent cependant apparaitre de nouvelles pratiques susceptibles de modifier et d’affecter considérablement la prise en charge actuelle des patients. En effet, si l’éducation thérapeutique du patient (ETP) répond bien à la préoccupation de prendre en charge l’aspect psychosocial et la réalité psychique du malade, la télémédecine en revanche, tend vers un risque de déshumanisation de la relation soignant/ soigné. Devenues l’une et l’autre des priorités de la santé publique, elles ne sont cependant pas sans poser de nombreux questionnements, qui pourraient insuffisamment être pris en compte par les acteurs responsables de leur mise en œuvre. L’objectif principal du travail de recherche est d’identifier les divers enjeux éthiques et juridiques émanant de ces nouvelles formes de prise en charge du patient. / In the health care system two complementary models of patient management exist: On the one hand, the biomedical model applies the analytic methodology of exact sciences. Schematically, "being sick" is simplified as having a disease, i.e. having a "morbid entity" within the body that the health professional will need to identify. This model, typically taught in medical schools, is limited by the fact that it does not take in consideration the patient globally, but rather focuses on the organ, which is considered as an object. On the other hand, the biopsychosocial approach takes into account the relationships between biological, psychological and social aspects of the disease. According to this model, the clinical evolution of the patient is not solely determined by the biological factors, but also by the forms of collective life and co-constitutive psychosocial life events of the subject, as well as by the structures and values that characterize the community. In recent years, patients have been claiming that a change in the biomedical logic of patient management is needed and wish to be a central concern by adopting a biopsychosocial logic. However, the scientific advances of the so-called "modern" medicine have allowed the emergence of new practices that may change and significantly affect the current management of patients. Indeed, even if the therapeutic patient education (TPE) meets the concerns of supporting the psychosocial aspect and the psychological reality of the patient, telemedicine, in contrast, tends to dehumanize the caregiver / patient relationship. Both have become priorities of the public health system, although not without raising numerous questions, which could be insufficiently taken into account by the actors responsible for their implementation. The main objective of the research is to identify the various ethical and legal challenges brought by these new forms of patient management.