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.

Dissertation / The aim of this study was to determine the knowledge of persons with hypertension in a selected geographical area regarding cardiovascular risk factors in order to make recommendations for patient education. A quantitative, non-experimental, descriptive study was done in the form of a survey using a questionnaire as measuring instrument. The population was hypertensive patients from selected private medical practices in the western part of KwaZulu-Natal and the bordering eastern part of the Free State. Convenience sampling was used and 46 respondents participated in the study. Only 16 (35%) of the respondents achieved a percentage on or above the competency indicator of 50%. Respondents performed worst in questions where definitions, for example hypertension, were assessed. Recommendations for a patient education document, nursing practice and further research were made. / Health Studies / M.A. (Health Studies)

Thèse réalisée en cotutelle entre Aix-Marseille Université et l'Université de Montréal / Introduction : 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. Cependant, il n’existe pas de publication décrivant l’ensemble de ces critères pour la population des adolescents diabétiques de type 1 pendant et après le programme d’ETP, et les outils d’évaluation en français sont manquants. Objectifs : 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 (article I). 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 (article II). 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 (article III). Méthode : Chaque objectif a nécessité une méthode spécifique : - Article I : utilisation de la méthode d’analyse de concept évolutionniste de Rodgers (2000) ; - Article II : utilisation de la méthode de revue systématique Cochrane Collaboration (Higgins & Green, 2011) ; - Article III : mise en œuvre d’un protocole de recherche pilote auprès d’une population d’adolescents de 12 à 17 ans inclus, diabétiques de type 1 sous insulinothérapie, participant à un programme d’ETP, à partir d’une méthode mixte concurrente parallèle en trois volets : quantitatif, qualitatif et intégratif. Résultats : Les résultats des travaux de thèse sont organisés par article : Le premier article porte sur les spécificités pédiatriques du concept d’éducation thérapeutique du patient par une analyse de la littérature de 1998 à 2012. Une clarification de concept selon la méthode de Rodgers (2000) a été réalisée, afin d’identifier les attributs spécifiques de la population des enfants et des adolescents. Cinq attributs ont émergé : la triade relationnelle, les partenariats collaboratifs, l’adaptation de l’apprentissage, l’acquisition progressive et évolutive des compétences, et la créativité. Cet article a été publié dans la revue Santé Publique. Le second article présente les résultats d’une revue systématique sur les effets et la qualité des programmes éducatifs dans le diabète de type 1 pédiatrique. Quarante-trois publications ont été incluses, représentant 36 programmes éducatifs, développant des compétences d’autosoins et/ou psychosociales. La qualité des programmes a été analysée selon les critères des recommandations de l’International Society of Pediatric and Adolescent Diabetes. Cet article a été soumis à la revue The Diabetes Educator, en anglais. Au préalable du troisième article, la validation des tests psychométriques des outils quantitatifs de la recherche est exposée, de même que les résultats des deux premiers temps de suivi de la cohorte d’adolescents. Le troisième article présente les résultats concernant un sous-échantillon de 24 adolescents ayant réalisé les trois mois de suivi (de M0 à M3), dont 21 qui ont participé au volet qualitatif. Les indicateurs cliniques et psychosociaux restaient stables au cours du temps. L’amélioration du sentiment d’efficacité personnelle avait tendance à être liée à l’amélioration de l’équilibre glycémique. L’analyse thématique qualitative a permis d’explorer les forces et les obstacles des adolescents diabétiques de type 1 de la cohorte pour parvenir à un comportement d’autogestion, tandis que les analyses multivariées qualitatives ont identifié les différences de discours entre les adolescents ayant une amélioration du sentiment d’efficacité personnelle et ceux qui le diminuent au cours du temps. Discussion : Ces travaux de recherche ont globalement 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. Des tendances ont été discutées, permettant d’envisager des axes d’amélioration tant dans l’amélioration des programmes d’ETP et le développement de compétences psychosociales, que dans de futurs travaux de recherche. Le statut de l’infirmier chercheur en France est également abordé. / Introduction: In France, therapeutic patient education programs (TPE) to type 1 diabetic (T1D) adolescents are designed for developed therapeutic adherence of their disease and its treatment. Based on social cognitive theory of Bandura, the effects of TPE activities should lead to the strengthening of self-efficacy, coupled with other socio-cognitive factors, favoring self-management, better quality of life and improved glycemic control. However, there is no publication describing all of criteria for T1D teenagers during and after the TPE and French questionnaires are missing. Aims: The thesis works was broken down into three main goals: 1. Perform concept clarification on the specifics of TPE in a pediatric context, from a litterature review (Article I). 2. Conduct a systematic review 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 diabetes type 1, and assess the consistency of these programs with the recommendations of the ISPAD (Article II). 3. Describe the evolution on three months of the socio-cognitive and clinical profile in a cohort of adolescents with diabetes who participated in an TPE program in France (Article III). Method: Each aim has required a specific method: - Article I: use of Rodgers’s evolutionary concept analysis method (2000); - Article II: use of Cochrane Collaboration systematic review methodology (Higgins & Green, 2011); - Article III: implementation of a pilot research protocol with a population of adolescents 12-17 years of age, type 1 diabetics on insulin, participating in an TPE program, from a mixed parallel concurrent method with three components: quantitative, qualitative and integrative. Results: Results of the thesis are organized by section: The first article focuses on pediatric specificities of the concept of therapeutic patient education with an analysis of the literature from 1998 to 2012. A concept clarification by Rodgers method (2000) was conducted to identify the specific attributes of children and adolescents. Five attributes have emerged: relational triad, collaborative partnership, adaptation of learning, gradual and progressive acquisition of skills, and creativity. This article was published in Santé Publique. The second article presents the results of a systematic review on the effects and the quality of educational programs in pediatric type 1 diabetes. Forty-three publications were included, representing 36 educational programs, developing self-care and / or psychosocial skills. Program quality was analyzed according to criteria of the International Society of Pediatric and Adolescent Diabetes recommendations. This article was submitted to The Diabetes Educator, in English. Beforehand the third article, psychometric validation of research tools is exposed, as well as the results of the first two-time monitoring of the cohort of adolescents (M0 and M1). The third article presents results on a subsample of 24 adolescents completed the three-month follow-up (M0 to M3), including 21 who participated in the qualitative component. The clinical and psychosocial indicators were stable over time. The improved self-efficacy tended to be linked to the improvement of glycemic control. The qualitative thematic analysis was used to explore the strengths and challenges of T1D adolescent’s cohort to achieve a self-management behavior, while qualitative multivariate analyzes identified differences in speech between adolescents who improve self-efficacy and those that decrease over time. Discussion: This research has generally allowed to develop knowledge on the TPE concept in the pediatric context, the state of research on structured educational programs in the children and adolescents type 1 diabetes, and to implement a pilot study in the context of the TPE in France. Trends were discussed, allowing to consider areas for improvement both in improving TPE programs and of life skills development, that in future research. Status of the nurse researcher in France is also discussed.

Introdução: as tecnologias educativas podem ser aplicadas por meio de materiais educativos, folhetos, vídeos, jogos ou qualquer outra estratégia que tenha por objetivo auxiliar a compreensão e aumentar o conhecimento de pacientes sobre sua saúde ou tratamento. Objetivo: avaliar a eficácia de uma tecnologia educativa impressa na redução de sinais e sintomas perioperatórios em pacientes submetidos à cirurgia ortognática. Método: trata-se de um ensaio clínico randomizado controlado desenvolvido no período de janeiro de 2013 a agosto de 2015, dividido em duas fases: um estudo piloto sem randomização para teste da intervenção e instrumentos, com oito pacientes; e, em segundo momento, o estudo clínico com as alterações decorrentes do estudo piloto. A amostra randomizada por blocos foi constituída de quarenta pacientes (vinte experimental e vinte controle), com seguimento de 45 dias. No grupo experimental, foi realizada a orientação pré-operatória pela enfermeira com auxílio da tecnologia educativa construída previamente para esse perfil de paciente e com orientação sobre os cuidados pós-operatórios (higiene oral, dieta, exercícios faciais, hidratação labial, exposição ao sol, abertura limitada da cavidade oral, controle da dor, repouso, banho e curativos), além da orientação habitual do cirurgião. O grupo controle recebeu somente as orientações rotineiras do cirurgião. Para a análise da intervenção, foram aplicados instrumentos para avaliar o conhecimento sobre os cuidados pós-operatórios, ansiedade pré e pós-procedimento pelo inventário de ansiedade IDATE traço e estado, sinais e sintomas do pós-operatório por instrumento de avaliação clínica. Na análise estatística, foi aplicado teste modelo de efeitos mistos para investigação dos dados do inventário de ansiedade traço-estado, teste de conhecimento e avaliação clínica, com exceção das medidas de peso corporal e dor para os quais foram utilizados GEE (=5%). Resultados: em relação ao teste de conhecimento observou-se melhora significativa do conhecimento no grupo experimental (p=0,000), o Inventário de ansiedade IDATE estado não apresentou diferença estatística entre a evolução nos dois grupos (p=0,818), e também no IDATE traço (p=0,906). Na avaliação dos sinais e sintomas por meio da análise clínica, não se observou diferença significativa entre a evolução dos grupos em todos os itens avaliados, mas notou-se no grupo experimental reduções mais expressivas entre o primeiro e segundo retorno em alguns sinais e sintomas do que no grupo controle. Esses pacientes também apresentaram menor dificuldade em realizar as refeições, iniciaram os exercícios faciais precocemente e utilizaram métodos de conforto para dormir e respirar melhor, itens correspondentes na orientação e na tecnologia educativa impressa aplicada. Conclusão: a estratégia de orientação e aplicação da tecnologia educativa para pacientes submetidos a cirurgia ortognática foi efetiva para o conhecimento dos pacientes sobre a cirurgia e o autocuidado. Observou-se melhora dos desfechos avaliados e sua implantação merece ser considerada para auxiliar o pós-operatório desses pacientes. NCT01803204. / Introduction: educational technologies can be applied through educational materials, brochures, videos, games or any other strategy which has the objective of assisting the understanding and raise awareness of patients about their health or treatment. Objective: To evaluate the efficacy of a printed educational technology in reducing signs and symptoms in perioperative patients undergoing orthognathic surgery. Method: this is a randomized controlled clinical trial carried out from January 2013 to August 2015, divided into two phases: A pilot study without randomization to test the intervention and instruments with eight patients, and the second time, the study clinical with the changes arising from the pilot study. A random sample of blocks consisted of 40 patients (20: experimental and 20: control), with follow-up of 45 days. In the experimental group the preoperative orientation was conducted by nurse with the help of educational technology previously built for this patient profile and guidance on post-operative care (oral hygiene, diet, facial exercises, lip hydration, sun exposure, aperture limited the oral cavity, pain control, rest, bathing and dressing), besides the usual surgeon orientation. The control group only received routine guidance of the surgeon. To evaluate the intervention were implemented instruments to assess knowledge about post-operative care, pre and the post-procedure Anxiety Inventory STAI trait and state anxiety, signs and symptoms postoperatively by clinical assessment tool. Statistical analysis: applied testing mixed-effects model for data analysis inventory of State-trait anxiety, knowledge test and clinical evaluation, with the exception of body weight measurements and pain that were used GHG (=5%). Results: in relation to knowledge we observed significant improvement of test knowledge in the experimental group (p=0.000), the state STAI Anxiety Inventory showed no statistical difference between the evolution in both groups (p=0.818), and also in trace IDATE (p=0.906). In the evaluation of the signs and symptoms through clinical evaluation there was no significant difference between the evolution of groups in all items, but was noted in the experimental group more decreases between the first and second return in signs and symptoms than in group control. These patients also had less difficulty in performing meals, facial exercises began early and comfort of methods used to sleep and breathe better by matching items in orientation and printed educational technology applied. Conclusion: the orientation of strategy proposed and application of educational technology for patients undergoing orthognathic surgery was effective in patients\' knowledge about surgery and self-care. There was a significant improvement in outcomes, although without statistical significance and the use of educational technologies deserve to be considered to assist the postoperative these patients. NCT01803204.

Introdução: A asma e a DPOC são doenças crônicas inflamatórias que afetam a qualidade de vida dos pacientes. O tratamento medicamentoso é feito, em sua maioria, por via inalatória utilizando para isso os dispositivos inalatórios. O uso incorreto dos dispositivos inalatórios diminui a eficácia dos medicamentos, o que pode ocasionar a não aderência dos pacientes ao tratamento. Vários tipos de programas educativos para asma e DPOC têm sido desenvolvidos, diferenciando-se quanto à forma de abordagem, à situação em que a doença é atendida e aos desfechos considerados. O farmacêutico por meio de um programa educacional pode orientar os pacientes sobre a técnica correta dos dispositivos inalatórios e auxiliar este paciente na adesão ao tratamento. Objetivos: Realizar a compilação e sistematização dos resultados dos trabalhos apresentados pelo programa de atenção farmacêutica aos pacientes asmáticos e portadores de DPOC do ICHC FMUSP e do programa de pós-graduação de Fisiopatologia Experimental. Método: estudo retrospectivo e descritivo dos trabalhos de conclusão dos alunos do Curso de Aprimoramento Profissional em Farmácia Hospitalar e Introdução a Farmácia Clínica da Divisão de Farmácia do ICHC FMUSP e do programa de pós-graduação de Fisiopatologia Experimental da Faculdade de Medicina da USP. Estes estudos desenvolveram a temática da atenção farmacêutica e educação em asma e em DPOC, apresentados entre os anos de 2004 a 2012 que não tiveram artigos ou capítulos de livros publicados. Resultados: Foram enviados três capítulos para publicação no livro Atenção Farmacêutica - Gestão e Prática do HCFMUSP e um artigo será publicado no Jornal Brasileiro de Pneumologia. Conclusão: Publicações acadêmicas com o tema atenção farmacêutica ao paciente portador de doenças respiratórias crônicas demonstram a importânica da orientação/ educação desses pacientes quanto ao tratamento de suas doenças respiratórias / Introduction: Asthma and COPD are chronic inflammatory diseases that affect the quality of life of patients. Drug treatment is done mostly by inhalation, using for it inhalation devices. Incorrect use of inhalers decreases the effectiveness of medications which can cause non-adherence of patients to treatment. Various types of educational programs for asthma and COPD have been developed, differing on the mode the approach, the situation in which the disease is answered and the outcomes considered. The pharmacist through an educational program can educate patients about the proper technique of inhalation devices and assisting the patient to adhere to treatment. Objectives: Perform the compilation and systematization from studies data submitted by the pharmaceutical care program for patients with asthma and COPD developed by pharmacists from course of improvement of the Division of Pharmacy ICHC USP and also by the program of graduate Experimental Pathophysiology, Faculty of Medicine, USP. Method: A retrospective, descriptive study with the outcomes of studies of the students that completed the course in Professional Development Course in Hospital Pharmacy and Introduction to Clinical Pharmacy, of Division of Pharmacy of ICHC USP and the program graduate in Experimental Pathophysiology, Faculty of Medicine of USP. The studies show the theme of pharmaceutical care and asthma education and COPD, submitted between the years 2004 to 2012 and who had no articles or book chapters related books published. Results: three book chapters were sent for publication in the book Pharmaceutical Care - Management and Practice HC FMUSP and one article will be published in the Brazilian Journal of Pulmonology. Conclusion: academic publications on the theme pharmaceutical care to patients with chronic respiratory diseases shows the importance orientation/education of patients regarding the treatment of their respiratory diseases

La question de l’observance non-médicamenteuse est primordiale dans la prise en chargedes maladies cardiovasculaires chroniques. Des programmes d’éducation thérapeutique dupatient (ETP) sont proposés aux patients afin de les aider à « mieux vivre avec leur maladie »(OMS, 1998). Leurs évaluations sont toutefois décevantes : ils touchent peu de patients etsont peu efficaces.Cette étude porte sur deux populations : des patients (N=19) et des médecins généralistes(N=14). Elle se base sur des entretiens menés auprès des uns et des autres ainsi que desobservations de consultation et de séquences de vie quotidienne. Nous en avons extrait uneanalyse qualitative approfondie ainsi que des éléments quantitatifs afin de mener à bien desanalyses factorielles. Le croisement de ces données permet dans un premier temps demettre en évidence la diversité des Arrière-plans (Searle, 1982, 1985) susceptiblesd’influencer la transformation des conduites des patients et d’en construire une typologie.Elle établit ensuite trois styles thérapeutiques, pratiqués par les médecins généralisteslorsqu’ils sont confrontés à ce type de patients.L’étude de la rencontre de cette diversité anthropologique avec ces différents styles montreque, malgré une configuration plus propice que celles des programmes hospitaliers, larencontre éducative entre médecine de proximité et patients cardiovasculaires ne se faitpas, ou ne se fait que sous certaines conditions bien fragiles. Son analyse sous l’angleanthropodidactique permet toutefois d’ébaucher de nouvelles formes d’ingénieriesdidactiques pour l’ETP et de donner de nouvelles pistes pour la formation des soignants. / Non-medication compliance is essential when taking care of chronic cardiovascular diseases.Therapeutic patient educational (TPE) programs are proposed to patients in order to helpthem to « have a better life with their disease » (WHO, 1998). However, those programs’evaluations are disappointing: they reach very few patients and are not as efficient asplanned.Drawing on semi-structured interviews with general practitioners (GPs, N=14) and patientsdealing with a cardiovascular chronic disease (N=19), and quantitative analysis of datarelated to a potential link between social factors and types of behaviour, this study firstemphasizes the diversity of Backgrounds (Searle, 1982, 1985) which may influence patients’life-style modifications. This work then defines four patient-types and three therapeuticstyles applied by GPs when confronted to those patients. Those styles vary according to GPsrepresentations and attitudes related to therapeutic education and cardiovascular diseases.This study shows that even though GPs are more likely to help with this transformation thanmandatory educational programs, the encounter between them and chronic patients doesnot happen, or only does in very specific and fragile conditions. Nevertheless, this anthropodidacticalapproach allows us to draft new forms of didactic engineering for TPE and to givenew tracks for healthcare professionals training.

L’exercice des soins de premier recours en maisons et pôles de santé pluriprofessionnels (MSP) connaît depuis quelques années un développement croissant. Ces modalités d’exercice sont présentées comme une solution aux défis que représentent le vieillissement de la population, l’augmentation de la prévalence des maladies chroniques, l’accentuation des inégalités sociales de santé et l’irrésistible croissance des dépenses de santé. Elles s’inscrivent dans une remise en cause du système de santé français, construit historiquement sur un modèle curatif hospitalo-centré et sur une médecine de ville d’exercice libéral et isolé. L’impératif d’un recentrage du système sur les soins de premier recours devient un objectif partagé par l’Etat et certains professionnels libéraux, associé à celui de leur réorganisation pour en accroître la dimension préventive et éducative, dans une approche de santé publique collective, populationnelle et mieux coordonnée au niveau d’un territoire. Comment les soins primaires se transforment-ils dans les MSP ? Dans les dynamiques observées, quels places et rôles jouent les pratiques préventives et éducatives ? Ces questions sont abordées avec une posture de recherche « engagée », inscrite dans une réflexion méthodologique et politique, articulant des approches médicale, de santé publique et sociologique. L’analyse de la littérature permet de resituer les MSP dans un continuum d’innovations organisationnelles, favorisées par la baisse de la démographie médicale, l’inégale répartition des professionnels et la territorialisation de l’offre de soins. Pour saisir de manière simultanée et dynamique les mutations en cours dans ce type de structure, leurs modalités et le sens que leur donnent les acteurs qui s’y engagent, la recherche s’appuie sur la monographie ethnographique d’un projet de MSP suivi dans la longue durée et sur des entretiens menés auprès de professionnels exerçant dans quatre MSP contrastées. La sociologie de l’innovation permet d’éclairer les « manières de faire » et les opérations de traduction qui tissent le développement d’un exercice coordonné en MSP et la mise en œuvre de pratiques préventives et éducatives entre des acteurs travaillant généralement peu ensemble. La sociologie interactionniste permet en outre d’appréhender les difficultés ressenties par les acteurs dans leur pratique, leurs objectifs et arguments en faveur de ce nouveau cadre organisationnel, ainsi que la diversité des formes de leur engagement et des logiques sociales qui les sous-tendent. Les MSP et les démarches de prévention et d’« éducation thérapeutique » qui y sont développées apparaissent comme des instruments politiques efficaces de « mise en mouvement » des professionnels autour d’objectifs et d’organisations à co-construire, pouvant emprunter plusieurs voies. Dans ces dispositifs locaux d’innovation souple, pluriprofessionnalité et pratiques préventives se nourrissent mutuellement, contribuant à une structuration territoriale des soins primaires et à l’émergence d’une définition étendue de la prévention. Cependant, ces transformations rencontrent des freins importants. D’une part, la réinvention d’une médecine collective de ville, contre laquelle s’était construite la médecine libérale, se heurte au poids des logiques professionnelles, questionnant la possibilité d’une diffusion de ces nouvelles organisations. D’autre part, l’ampleur de l’offre préventive et éducative est limitée par les ressources disponibles, par les choix des professionnels et par la faible place donnée aux patients et aux usagers. Ces résultats interrogent la capacité des acteurs à dépasser des logiques professionnelles pour intégrer dorénavant des logiques de santé publique à visée préventive et éducative. Ils questionnent également leur volonté de s’inscrire dans une démarche de promotion de la santé, permettant d’interpeller les politiques sur les actions intersectorielles à mener contre les déterminants des inégalités sociales de santé. / The delivery of primary care in multi-professional health care centres (MSPs) has met with growing interest over the past few years. These types of care organisations have been presented as a solution to the challenges associated with population ageing, the increasing prevalence of chronic diseases, the rise of inequalities in healthcare and of healthcare expenditures. MSPs contribute to the questioning of the French health care system, based historically on a curative and hospital-centred model complemented by a self-employed, isolated and city-concentrated system of medical practice. The need to give primary care a central place in the system has become an objective shared by public institutions and by some self-employed healthcare professionals (HCPs). It is associated with the aim of restructuring primary care in order to emphasize a prevention-based approach, in a more collective, coordinated, population-based and territory-based approach of public health. How are primary care practices being transformed within these MSPs? In the dynamics observed, what are the place and role played by preventive and educational practices? These questions are explored with a posture of “committed” research, based on a methodological and political reflection, involving medical, public health and sociological approaches. An analysis of the literature enables this research to place the development of MSPs in a continuum of organisational innovations, favoured by the decreasing number of doctors, the uneven distribution of HCPs and the territorialisation of healthcare provision. In order to seize - in a simultaneous and dynamic way - the current transformations and arrangements observed in MSPs and the meaning they have for the actors involved, the research is based on an ethnographical monograph of a project of MSP followed over a long period, and on interviews held with actors practicing in four different MSPs. The sociology of innovation enables us to highlight the “ways of doing things” and the translation operations that help to weave together the development of coordinated practice in MSPs and the implementation of prevention and educational measures involving actors not accustomed to working together. Moreover, the interactionist perspective in sociology allows us to apprehend the difficulties met by the actors in their daily practice, their aims and their arguments in favour of a new organisational framework, as well as the diversity of the different forms of their engagement and the underlying social dynamics. MSPs and initiatives of prevention and patient education implemented in these institutions appear as effective political instruments to “put professionals in movement” around objectives and organisations that have to be built up together, following several paths. With these flexible innovative devices, multi-professionality and preventive practices feed mutually on each other, contributing to the structuring of a primary care system on a territorial basis, and to the emergence of a wider definition of prevention. However, these transformations meet important constraints. On one hand, the reinvention of a collective medicine, against which the self-employed medicine has been opposed for over a century, collides with the weight of a heavy professional logical system, questioning the possibility of an extension of these new organisations. On the other hand, the scale of the preventive and educational supply of care is limited by the available resources as well as the choices made by the actors- and by the low rank given to patients. These results question the capacity of the actors to overtake the logical professional approach in order that they integrate from now on a public health logical approach with a preventive and educational aim. They also question the will of the actors to integrate a health-promoting approach, than could tackle the politics of intersectoral actions to affront the determinants of health inequalities.

Um fosso separa o desenvolvimento teórico-metodológico na Educação e Comunicação de sua prática aplicada à Saúde, usualmente, centrada na transmissão de informações para a mudança de comportamento. Nesta pesquisa qualitativa, exploramos o uso do conceito de competência para deslocar o binômio informação - comportamento para uma articulação de outra ordem: problema – saber - ação. Levantamos as competências requeridas para o autocuidado no diabetes, na opinião de diabetólogos, e identificamos as já disponíveis entre portadores, por meio de grupo focal e entrevista. Os resultados mostram a riqueza de saberes e competências que possuem os portadores, o que pode abrir possibilidades novas de diálogo com os profissionais de saúde, bem como promissoras perspectivas de aplicação no campo da inteligência coletiva. / A huge gap separates the theoretical and methodological development in the field of Education and Communication from its practice in health centers, usually focused in the transmission of information aiming at behavioral changes. In our qualitative research we explored the use of competence concept to change the binomial information-behavior into problem- knowledge- action. The requested competences towards diabetic care according to diabetes specialists and those available among diabetics obtained through focus groups and interviews were identified. The vast knowledge and competence of the diabetics shown by the results lead to several new possibilities of dialog with healthcare professional as well as promising prospects of actual application in the field of collective intelligence

Background Health education programs that are aimed at improving individuals' skills to self-manage are increasingly recognised as a critical component of chronic disease management. Despite the apparent need for such interventions, current studies show inconsistent results regarding program effectiveness, with meta-analyses indicating only marginal effects for some disease groups. A closer examination of these studies however suggests that the magnitude and inconsistency of the findings may be related to the types of outcomes that were assessed rather than specific disease groups. Where self-report measures were used, results tended to be smaller and inconsistent. It is therefore possible that current studies do not adequately reflect program effects because self-report outcomes have a high risk to be confounded by a range of potential biases. Objective The aim of this thesis was to identify and quantify the potential influence of biases in the measurement of change in chronic disease self-management interventions using self-report. Methods The research design targeted the processes that individuals undergo when filling out questionnaires and whether this has an influence on their self-report outcomes. This was achieved by developing a three-group research design. The Health Education Impact Questionnaire (heiQ) was used to collect outcomes data. While pretest questionnaires were identical across groups, three questionnaire versions were randomly distributed at posttest. One of the groups filled out traditional posttest questions (n=331), whereas the other two groups were asked to provide data in addition to posttest questions, with one group providing transition questions (n=304) and one providing retrospective pretest data (n=314). Resulting datasets were further examined for possible confounding effects through response shift and social desirability bias. Through the random allocation of the heiQs it was ensured that data were not influenced by potential intra-group effects. Results The thesis revealed that the design of the posttest questionnaire significantly influenced people's ratings of their posttest levels. In particular, when participants were asked to provide ratings of their retrospective pretest levels in addition to their posttest levels, the latter scores were significantly higher than those of participants who did not perform this additional task. Subsequent analyses however suggested that these differences could neither be explained by response shift nor by social desirability bias. Conclusions This research has provided important insight into the measurement of outcomes of chronic disease self-management interventions. While the threat to the validity of traditional pretest-posttest data due to confounding effects through response shift and social desirability biases could not be supported, the thesis has highlighted that the cognitive task that subjects are asked to perform when providing data at posttest significantly influenced their self-reported outcomes. Given that previous research has predominantly focused on other aspects of validity - such as applying control group designs to circumvent common threats to internal and external validity - this study suggests that more attention must be paid to the design of questionnaires. The thesis concludes that further research, in particular into the influence of cognitive tasks on obtained scores, is important to improve the interpretation of self-report outcomes data derived from participants of self-management interventions.

ABSTRACTThe general aim of this thesis was to investigate behavioral change communication at nurse-led chronic obstructive pulmonary disease (COPD) clinics in primary health care, focusing on communication in self-management and smoking cessation for patients with COPD.Designs: Observational, prospective observational and experimental designs were used.Methods: To explore and describe the structure and content of self-management education and smoking cessation communication, consultations between patients (n=30) and nurses (n=7) were videotaped and analyzed with three instruments: Consulting Map (CM), the Motivational Interviewing Treatment Integrity (MITI) scale and the Client Language Assessment in Motivational Interviewing (CLAMI). To examine the effects of structured self-management education, patients with COPD (n=52) were randomized in an intervention and a control group. Patients’ quality of life (QoL), knowledge about COPD and smoking cessation were examined with a questionnaire on knowledge about COPD and smoking habits and with St. George’s Respiratory Questionnaire, addressing QoL. Results: The findings from the videotaped consultations showed that communication about the reasons for consultation mainly concerned medical and physical problems and (to a certain extent) patients´ perceptions. Two consultations ended with shared understanding, but none of the patients received an individual treatment-plan. In the smoking cessation communication the nurses did only to a small extent evoke patients’ reasons for change, fostered collaboration and supported patients’ autonomy. The nurses provided a lot of information (42%), asked closed (21%) rather than open questions (3%), made simpler (14%) rather than complex (2%) reflections and used MI non-adherent (16%) rather than MI-adherent (5%) behavior. Most of the patients’ utterances in the communication were neutral either toward or away from smoking cessation (59%), utterances about reason (desire, ability and need) were 40%, taking steps 1% and commitment to stop smoking 0%. The number of patients who stopped smoking, and patients’ knowledge about the disease and their QoL, was increased by structured self-management education and smoking cessation in collaboration between the patient, nurse and physician and, when necessary, a physiotherapist, a dietician, an occupational therapist and/or a medical social worker.Conclusion The communication at nurse-led COPD clinics rarely involved the patients in shared understanding and responsibility and concerned patients’ fears, worries and problems only to a limited extent. The results also showed that nurses had difficulties in attaining proficiency in behavioral change communication. Structured self-management education showed positive effects on patients’ perceived QoL, on the number of patients who quit smoking and on patients’ knowledge about COPD.