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Rheumatoid arthritis (RA) is a chronic, progressive autoimmune disease causing inflammation of the synovium resulting in severe pain, joint disfigurement and disability as well as malaise, fatigue and a depressed immune system. Treatment consists of three broad phases; firstly, following diagnosis treatment is focussed on rapid reduction of pain and inflammation. Secondly, maintenance of quiescence is sought through medication. Finally, if disease activity remains high despite medication, escalation to anti-TNF α therapy is required to prevent permanent joint damage and disability. The primary course of treatment is prescription of disease modifying anti-rheumatic drugs (DMARDs) within 3 months of onset of symptoms. However, DMARDs can take 8-12 weeks to exhibit a noticeable benefit whereas unpleasant side effects can occur shortly after initiation. Also, DMARDs do not alleviate pain; therefore it is difficult for patients to attribute recovery to this medication. For these reasons, although it is imperative for future health and functioning to take DMARDs as prescribed, non-adherence is common at 30-50%. Non-adherence to treatment can be intentional, where a decision is made not to conform to the prescription, or unintentional which is often due to forgetting. To measure intentional non-adherence, a validated measure of adherence for rheumatoid arthritis was reduced through exploratory factor analysis from 19 items to 5 items by removing items that did not add to the explained variance of adherence. The CQR5 explained 53% of the variance in adherence and was shown to have a good fit to the data through confirmatory factor analysis. A discriminant function equation was generated that correctly identifies 88.5% of patients as high or low adherers and has high clinical utility due to the brevity for patients and unidimensionality for easy interpretation. The CQR5 was used throughout the programme of research to measure intentional non-adherence along with a separate measure of unintentional non-adherence. Four commonly used social cognition models of illness were measured in 227 RA patients to determine which had the best utility for predicting non-adherence to DMARDs. Patients were recruited to represent the three stages of illness including newly diagnosed, established on DMARD therapy and established with concurrent anti-TNF α therapy. Logistic regression analysis showed that the Self Regulatory Model best predicted intentional non-adherence as patients with perceptions of worse consequences of RA and longer disease duration were more likely to be highly adherent to DMARDs in cross-sectional analysis. In contrast, the Theory of Planned Behaviour better predicted patients who self-reported forgetting their DMARDs with patients with more confidence in being able to take their medications (Perceived Behavioural Control) being less likely to forget. 171 patients were successfully followed-up six months after baseline recruitment. The longitudinal results showed that the social cognition models differed for patients at different stages of the illness suggesting that their experience of living with rheumatoid arthritis influenced perceptions of their illness and medications. Newly diagnosed patients scored lower on factors measuring perceptions of disease chronicity and seriousness whereas patients that had escalated to anti-TNF α therapy scored higher on these factors. The newly diagnosed patients also showed more variability in the social cognition scores whereas the more established patients demonstrated stable models of illness. This supports Leventhal’s (1992) theory that illness representations will be regulated through integration of knowledge and experience of an illness. Structural equation modelling was used to establish the best predictors of intentional non-adherence at six month follow-up. In support of research in other chronic illnesses (Horne & Weinman, 2002; Niklas, Dunbar & Wild, 2010), the effect of perceptions of the consequences and chronicity of the illness on adherence are mediated by perceptions of the necessity of the medication. In addition, the impact of the emotional reaction to the illness on adherence to DMARDs is mediated by concerns about the medication. In addition, this study incorporated factors from the Theory of Planned Behaviour to explain medication adherence and found that the influence of friends and family impacts on the patient’s confidence to follow the prescription accurately which in turn as an effect on adherence to DMARDs. This large longitudinal study found that by combining factors from a number of social cognition models, it is possible to explain and predict intentional non-adherence and provides some evidence for best ways to intervene to improve adherence and prognosis. To provide a more comprehensive and clinically useful picture of non-adherence, a Cost of Illness study was carried which found that patients self-reporting low adherence to DMARDs also had significantly higher costs for this medication. This was caused by an increased incidence of Leflunamide prescribing for patients who often forget their medication and was maintained longitudinally. This association has not been previously reported in the literature and provides some evidence that non-adherence to DMARDs is having a concrete effect on the clinical management of patients. Finally, an SMS text message based reminder service designed to remind patients who self-report forgetting their medications was tested through a simulation study for the cost and likely benefit in health related quality of life using the health economic analysis of the longitudinal study and the results of a survey establishing the feasibility of implementing such a service in the rheumatology clinic. A sensitivity analysis testing the number of messages sent and the cost per message found that a reminder service for the sample of patients in this programme of research would cost between £1387.00 and £142.27 per year. This would equate to a cost per Quality Adjusted Life Year (QALY) gain of between £2889.58 and £296.40 by enabling patients to adhere more rigorously to their DMARD regimen. This programme of research is the first to test four commonly used social cognition models to predict adherence to DMARDs in a large, multi-centre longitudinal study of rheumatoid arthritis patients. Perceptions of the likely duration and consequences of the illness, as measured by the Illness Perceptions Questionnaire and the necessity of medications (measured by the Beliefs about Medications Questionnaire) along with self-efficacy (measured by the Theory of Planned Behaviour) explained 24% of the variance in intentional adherence over six months. The results show the importance of considering intentional and unintentional non-adherence separately as they appear to have different underlying mechanisms as well as patients in different phases of the illness as their experience influences their social cognition models of illness. A simple SMS based reminder service could act as a cue to action to reduce unintentional non-adherence whereas addressing issues surrounding maladaptive perceptions about the illness and the treatment could improve intentional non-adherence which has the potential to improve the prognosis and quality of life for patients as well as safe costs for the NHS.

In Canada mental health related concerns are estimated to cost the economy $20-$50 billion annually. 500,000 Canadian each week have to take time off of work because of a mental health disability. This study explores the experiences of people living with a mental health disability in the workplace. The goal is to provide an opportunity to highlight many of the obstacles they face every day. This study relies on qualitative methodologies, using semi-structured interviews to get a more detailed understanding of their experiences. This study not only highlights the perceptions, experience and challenges of people living with a mental health disability, it highlights coping strategies and suggestions for building mentally health workplaces. The participant’s personal narratives can help by providing a chance for a community to build and be used to challenge the stigma and discrimination associated with mental health. / October 2016

À partir d’une approche psychosociale de la situation thérapeutique, cette thèse interroge les processus et les enjeux psychosociaux associés au développement des compétences psychosociales dans le contexte de l’éducation thérapeutique du patient diabétique de type 1. Suite aux limites identifiées par une revue systématique de la littérature (N = 60 articles), nous avons réalisé une recherche qualitative auprès d’adolescents diabétiques (N = 28) dans le but de mieux comprendre leurs besoins en termes de compétences psychosociales. Ce travail nous a ensuite amenés à dégager trois perspectives de recherche que nous avons exploités à partir de différentes stratégies méthodologiques : une étude expérimentale (N = 102) et une étude transversale (N = 261) auprès d’adultes diabétiques ; une étude prospective visant à suivre l’évolution du profil sociocognitif d’adolescents diabétiques (N = 24) ; et une étude qualitative à partir dix focus groups composés d’adolescents diabétiques (N = 26), de leurs parents (N = 9) et de professionnels de santé (N = 11). L’articulation de ces études montre que les compétences psychosociales sont régulées par des processus psychosociaux qui sont en jeu dans le contexte dynamique de la relation thérapeutique. Ces compétences s’inscrivent dans un système d’actions et d’interprétations socialement façonné par des enjeux thérapeutiques et relationnels ainsi que par une symbolique sociale. Leur développement semble déterminé par le statut social et l’identité des acteurs, les motivations et les attentes propres à chacun, ainsi que par la représentation de l’autre mobilisée pour construire le climat de la relation thérapeutique. / Based on a psychosocial approach to the therapeutic situation, this thesis examines the psychosocial processes and issues involved in the development of psychosocial skills in the context of the therapeutic education of type 1 diabetic patients. Following the limitations identified by our systematic review (N = 60 articles), we conducted a qualitative research with diabetic adolescents (N = 28) in order to better understand their needs in terms of psychosocial skills. This work led us to identify three research perspectives that we carried out using different methodological strategies: an experimental study (N = 102) and a transversal study (N = 261) with diabetic adults; a prospective study to following the evolution of the sociocognitive profile of adolescents with diabetes (N = 24); and a qualitative study using ten focus groups of adolescents with diabetes (N = 26), parents (N = 9) and health professionals (N = 11). The articulation of these studies shows that psychosocial skills are regulated by psychosocial processes that are at stake in the dynamic context of the therapeutic relationship. These skills are part of a system of actions and interpretations socially shaped by therapeutic and relational issues as well as by a social symbolism. Their development seems to be determined by the social status and identity of the actors, their motivations and expectations, and by the representation of others mobilized to build the climate of the therapeutic relationship.

A não adesão ao tratamento é um terreno complexo para compreensão e manejo. Este estudo evidenciou os profissionais de saúde que, cotidianamente, são interpelados por tal questão. O objetivo foi refletir acerca de quais os efeitos da não adesão ao tratamento para a equipe de saúde, assim como quais ações/reações da equipe podem gerar, como efeito, a não adesão ao tratamento. O instrumento de coleta de dados foi uma entrevista semiestruturada. A amostra foi composta por 10 profissionais que trabalham com adolescentes em tratamento de doenças crônicas, entre eles: médicos (as), psicólogos (as), fisioterapeutas, nutricionistas e enfermeiros (as). O método para análise dos dados foi a Análise Temática e a Psicanálise foi utilizada para interpretação e discussão do material. Como resultado, a não adesão foi vinculada às carências (socioeconômicas, familiares e educacionais) percebidas nos pacientes, ao período da adolescência (quando o próprio paciente começa a cuidar de seu tratamento) e ao sofrimento advindo da condição da doença. Outros elementos também foram identificados: a presença de uma dinâmica entre paciente-família-equipe, da qual emergiu um ciclo de encaminhamentos, cujo objetivo poderia significar uma tentativa de eliminação de um incômodo (a não adesão), produzindo a cronificação do mesmo. Verificou-se, também, a presença de uma confusão entre cuidado e controle, sendo que as relações estiveram permeadas por desconfiança, verificação e correção. Percebeu-se, ainda, a relação entre não adesão e frustração, seja porque o tratamento é insuficiente para evitar o sofrimento do paciente, podendo até mesmo causá-lo; seja pelo desconforto advindo da percepção de não cooperação do outro, acarretando em uma sensação de inutilidade do trabalho realizado. Ao final, como efeitos para a equipe, evidenciou-se a presença de profissionais envolvidos por um discurso de frustração e impotência. Como efeitos da equipe, verificam-se profissionais produzindo aquilo a de que se queixam, pelos lugares subjetivos que delineiam e cristalizam nas relações. A partir disso, problematiza-se o sentido que a não adesão ao tratamento assume no contexto assistencial (falha que impede o trabalho, necessitando ser controlada/corrigida/extirpada), o que dificulta abordá-la como um sintoma que necessita ser colocado em evidência, já que pode sinalizar os percalços (e as possíveis resoluções) de um contrato relacional, no qual a própria equipe está, necessariamente, implicada / Non-adherence to treatment is a complex field for understanding and handling. This study emphasizes the health professionals who, on a daily basis, face this question. The objective is to think over on the effects of non-adherence to treatment to the health team, as well as which actions/reactions from the team can generate, as an effect, non-adherence to treatment. The instrument of data collection is a semi-structured interview. The sample consists of 10 professionals working with adolescents in the treatment of chronic illness: doctors, psychologists, physiotherapists, nutritionists and nurses. The method for data analysis is Thematic Analysis, and Psychoanalysis is used for interpretation and discussion. As a result, non-adherence is related to: a socioeconomic, family and educational lack in the patients; to the adolescence period (when the patient begins to take care of his/her own treatment); and to the suffering coming from the condition of the disease. Other elements are also identified: the presence of a patient-family-team dynamics, from which a cycle of problem transmission to the other arises, wich could mean an attempt to eliminate a nuisance (non-adherence), producing a chronification of the issue. It is also verified the presence of a confusion between care and control, and the relations are permeated by distrust, verification and correction. The relationship between non-adherence and frustration are also noticed, because the treatment is insufficient to avoid the suffering of the patient, and may even cause it; or because of the discomfort arising from the perception of non-cooperation of the other, resulting in a sense of uselessness of the work performed. In the end, as effects to the team, the presence of professionals involved by a speech of frustration and impotence is evidenced. As effects from the team, it is possible to notice professionals producing what they complain about, by the subjective places that delineate and crystallize in relationships. From this, the meaning that non-adherence to treatment assumes in the care context (failure that restrains work, need to be controlled/corrected/eliminated) is problematized, which makes it difficult to approach it as a symptom that needs to be highlighted, since it can mean the mishaps (and possible resolutions) of a relational contract, in which the team itself is necessarily involved

A Saúde da Família (ESF) é o modelo de organização da Atenção Básica com maior cobertura populacional no Brasil. Esta alcançou alguns resultados relevantes para a saúde da população, embora diversos problemas persistam na sua efetivação. Entendemos ser possível e necessário interrogarmos a ESF enquanto modelagem assistencial. Os arranjos e diretrizes propostos foram eficazes para o enfrentamento de problemas autolimitados. Mas no manejo das condições crônicas de adoecimento há muito que refletir. Apresenta-se então o desafio de problematizarmos a Saúde da Família a partir das interfaces produzidas por profissionais de saúde e usuários com condições crônicas de adoecimento, em particular o diabetes mellitus tipo 2, identificando e analisando os dispositivos de saber-poder que opera-se no cotidiano dos serviços. Produzimos neste estudo uma aproximação prolongada ao trabalho de duas equipes e unidades de saúde da família do município de Vitória-ES, de natureza cartográfica e micropolítica, feita por meio de observação participante, com produção de diário de campo em reuniões de equipe, atividades de grupo, visitas domiciliares, andanças pelos territórios e interações com profissionais e usuários nas diversas ações realizadas pelas equipes de saúde, bem como entrevistas semiestruturadas com onze usuários. Como resultados, identificamos que a programação da atenção orienta parte significativa dos processos de trabalho da equipe, sendo que esta é reforçada por uma série de iniciativas da gestão do município no sentido de estabelecer e exigir o cumprimento de metas e indicadores. E essa programação da atenção agencia processos de trabalho enrijecidos, até mesmo burocráticos, fortemente atrelados ao modelo médico hegemônico e centrados nas demandas dos próprios profissionais, não havendo espaço para a singularidade do encontro entre trabalhadores e usuários. A resultante disto é a não consideração do usuário como centro do cuidado. E ao não encontrarem ressonância em termos de mudança efetiva nos estilos de vida das pessoas, os profissionais veem os usuários como rebeldes, considerando a rebeldia em uma conotação negativa, como sinal da adoção de referenciais incorretos e desqualificados para manejar esse tipo de problema segundo o saber científico. As equipes não agenciam os encontros de forma a produzir uma potente circulação de afetos nessa relação de forma a permitir a expressão da autonomia dos indivíduos na produção de sua vida enquanto força instituinte de formas mais inventivas de viver, a construir projetos terapêuticos de maneira compartilhada e contribuir para a promoção de mais intensas conexões de vida. Mas os usuários, apesar de todas as iniciativas de controle e disciplinarização, produzem inúmeras linhas de fuga, resistindo às recomendações e construindo seu próprio modo de cuidar de si. Desta forma, apesar de estar cristalizada a ideia da ESF como espaço de promoção da saúde, concluímos que este modelo de atenção agencia e reforça seu oposto. Tem-se uma ESF preventivista, higienista e disciplinadora que normaliza e empobrece a vida. Torna-se então fundamental problematizar a ESF em sua intensidade política por controle, disciplinarização e regulação de corpos e populações. / Family Health Strategy (FHS) is the organizational model of Primary Care with the highest population coverage in Brazil. It has achieved some significant results for people\'s health, although several problems still persist in its implementation. We believe it is possible and necessary to question FHS while assistance modeling. The proposed arrangements and guidelines were effective for coping with self-limiting problems. But in the management of chronic conditions, there is much to reflect. There is the challenge of problematizing FHS from interfaces produced by healthcare professionals and patients with the chronic conditions, particularly type-2 diabetes mellitus, identifying and analyzing the knowledge-power devices that operate in everyday services. This study shows an extended approach to the work of two health teams and family health units in the city of Vitória-ES, of cartographic and micropolitic nature, made through participant observation, with production of field diary in team meetings, group activities, home visits, travels through territories and interactions with professionals and users in the various actions taken by health teams, as well as semi-structured interviews with eleven users. As a result, we identified that care scheduling guides significant part of team work processes, which is enhanced by a number of municipal management initiatives to establish and enforce goals and indicators. This care scheduling (programação da atenção) supports stiff work processes, even bureaucratic works, strongly linked to the hegemonic medical model and focused on the demands of professionals themselves, with no room for the uniqueness of the encounter between health workers and users. The result is that the user is not considered as the center of care. And by not finding resonance in terms of effective change in the \"lifestyles\" of people, professionals see users as rebels, considering the rebellion in a negative connotation, as a sign of adopting erroneous and unqualified references to handle this kind of problem according to scientific knowledge. Teams do not support meetings to produce a powerful circulation of affects in this relationship in order to allow the expression of autonomy of individuals in the production of their lives while instituting force of more inventive ways of living, to build therapeutic projects in a shared manner and contribute to the promotion of more intense connections of life. But users, despite all control and disciplining initiatives, produce numerous lines of escape, resisting recommendations and building their own way to care for themselves. Thus, although the idea of FHS is crystallized as a health promotion space, we conclude that this care model supports and reinforces its opposite. There is a preventative, hygienist and disciplinarian FHS, which normalizes and impoverishes life. It then becomes important to question FHS in its politica.

A não adesão ao tratamento é um terreno complexo para compreensão e manejo. Este estudo evidenciou os profissionais de saúde que, cotidianamente, são interpelados por tal questão. O objetivo foi refletir acerca de quais os efeitos da não adesão ao tratamento para a equipe de saúde, assim como quais ações/reações da equipe podem gerar, como efeito, a não adesão ao tratamento. O instrumento de coleta de dados foi uma entrevista semiestruturada. A amostra foi composta por 10 profissionais que trabalham com adolescentes em tratamento de doenças crônicas, entre eles: médicos (as), psicólogos (as), fisioterapeutas, nutricionistas e enfermeiros (as). O método para análise dos dados foi a Análise Temática e a Psicanálise foi utilizada para interpretação e discussão do material. Como resultado, a não adesão foi vinculada às carências (socioeconômicas, familiares e educacionais) percebidas nos pacientes, ao período da adolescência (quando o próprio paciente começa a cuidar de seu tratamento) e ao sofrimento advindo da condição da doença. Outros elementos também foram identificados: a presença de uma dinâmica entre paciente-família-equipe, da qual emergiu um ciclo de encaminhamentos, cujo objetivo poderia significar uma tentativa de eliminação de um incômodo (a não adesão), produzindo a cronificação do mesmo. Verificou-se, também, a presença de uma confusão entre cuidado e controle, sendo que as relações estiveram permeadas por desconfiança, verificação e correção. Percebeu-se, ainda, a relação entre não adesão e frustração, seja porque o tratamento é insuficiente para evitar o sofrimento do paciente, podendo até mesmo causá-lo; seja pelo desconforto advindo da percepção de não cooperação do outro, acarretando em uma sensação de inutilidade do trabalho realizado. Ao final, como efeitos para a equipe, evidenciou-se a presença de profissionais envolvidos por um discurso de frustração e impotência. Como efeitos da equipe, verificam-se profissionais produzindo aquilo a de que se queixam, pelos lugares subjetivos que delineiam e cristalizam nas relações. A partir disso, problematiza-se o sentido que a não adesão ao tratamento assume no contexto assistencial (falha que impede o trabalho, necessitando ser controlada/corrigida/extirpada), o que dificulta abordá-la como um sintoma que necessita ser colocado em evidência, já que pode sinalizar os percalços (e as possíveis resoluções) de um contrato relacional, no qual a própria equipe está, necessariamente, implicada / Non-adherence to treatment is a complex field for understanding and handling. This study emphasizes the health professionals who, on a daily basis, face this question. The objective is to think over on the effects of non-adherence to treatment to the health team, as well as which actions/reactions from the team can generate, as an effect, non-adherence to treatment. The instrument of data collection is a semi-structured interview. The sample consists of 10 professionals working with adolescents in the treatment of chronic illness: doctors, psychologists, physiotherapists, nutritionists and nurses. The method for data analysis is Thematic Analysis, and Psychoanalysis is used for interpretation and discussion. As a result, non-adherence is related to: a socioeconomic, family and educational lack in the patients; to the adolescence period (when the patient begins to take care of his/her own treatment); and to the suffering coming from the condition of the disease. Other elements are also identified: the presence of a patient-family-team dynamics, from which a cycle of problem transmission to the other arises, wich could mean an attempt to eliminate a nuisance (non-adherence), producing a chronification of the issue. It is also verified the presence of a confusion between care and control, and the relations are permeated by distrust, verification and correction. The relationship between non-adherence and frustration are also noticed, because the treatment is insufficient to avoid the suffering of the patient, and may even cause it; or because of the discomfort arising from the perception of non-cooperation of the other, resulting in a sense of uselessness of the work performed. In the end, as effects to the team, the presence of professionals involved by a speech of frustration and impotence is evidenced. As effects from the team, it is possible to notice professionals producing what they complain about, by the subjective places that delineate and crystallize in relationships. From this, the meaning that non-adherence to treatment assumes in the care context (failure that restrains work, need to be controlled/corrected/eliminated) is problematized, which makes it difficult to approach it as a symptom that needs to be highlighted, since it can mean the mishaps (and possible resolutions) of a relational contract, in which the team itself is necessarily involved

Resumo UCHÔA-FIGUEIREDO, L. R. O impacto da doença na vida cotidiana dos cuidadores de crianças com epilepsia de dificil controle. 2009. 260f. Tese (Doutorado) Faculdade de Filosofia, Ciências e Letras de Ribeirão Preto, Universidade de São Paulo, São Paulo, 2009. A notícia de que o filho tem uma doença crônica remete os pais a uma crise em relação às expectativas decorrentes do desejo do filho idealizado. A família sofre pela incerteza da evolução da doença e suas possíveis consequências. A mãe, comumente, torna-se a cuidadora principal, ajudando a suprir necessidades, apresentando uma vida ocupacional deficitária, pois despende tempo, energia física e emocional, sofrendo perdas, sobrecarga de atividades e comprometendo a sua qualidade de vida. O objetivo desta pesquisa foi conhecer as mudanças que ocorrem na vida cotidiana do cuidador primário de pacientes, com diagnóstico de Epilepsia de Difícil Controle Infantil associado à encefalopatia crônica não evolutiva, avaliar a qualidade de vida e a sobrecarga em função da situação de adoecimento e verificar a relação desta sobrecarga emocional com a percepção dos cuidadores, sobre sua qualidade de vida. Avaliaram-se 50 cuidadores de crianças entre 7 e 12 anos, de ambos os sexos, com diagnóstico confirmado há cinco anos, e que estavam nesta função há pelo menos dois anos. A pesquisa foi aprovada pelo Comitê de Ética em Pesquisa Envolvendo Seres Humanos do HCFMRP e foi realizada no Serviço de Epilepsia Infantil do mesmo hospital. Foram utilizados: prontuários médicos das crianças, entrevista semi-estruturada enfocando o adoecimento, o cuidar e a vida cotidiana, os questionários de sobrecarga, Caregiver Burden Scale e de Qualidade de Vida, WHOQOL-bref. Os dados obtidos na entrevista foram analisados segundo o Sistema Quantitativo Interpretativo. Os dados do WHOQOL-bref e da Caregiver Burden Scale foram submetidos à análise estatística, de acordo com as normas do instrumento. Posteriormente, através da técnica dos quadrantes e da análise de coeficiente não paramétrica de Spearman, os dados foram correlacionados, no sentido de verificar possíveis relações entre aspectos da vida cotidiana, sobrecarga e percepção, por parte dos cuidadores, de sua qualidade de vida. Os resultados possibilitaram conhecer que houve mudança, diminuição do convívio social, alteração na vida profissional e estresse na vida do cuidador em decorrência do ato de cuidar. Em relação à qualidade de vida, pôde-se constatar que o domínio meio ambiente apresentou maior satisfação, enquanto que o menor índice ficou com as relações sociais, indicando assim a importância da rede de apoio social para o cuidador. A variável tempo de cuidado indicou que, quanto maior este for, maior a satisfação com relação ao bem-estar psicológico, meio ambiente e relações sociais. Identificaram-se dois tipos de sobrecarga, a velada e a declarada. Conclui-se que o impacto do adoecimento da criança interfere diretamente na vida cotidiana e nas relações dos cuidadores, assim como na qualidade de vida, porém, percebe-se que recursos estruturais e emocionais contribuem para minimizar os efeitos negativos sobre os cuidadores. Neste sentido ressalta-se a importância da equipe multidisciplinar oferecendo amparo informativo, técnico, troca de experiência e suporte aos cuidadores. / UCHÔA-FIGUEIREDO, L. R. Disease impact on the daily lives of caretakers of children with Difficult to Control Epilepsy. 2009. 260p. Thesis (PhD) Faculty of Philosophy, Science and Humanities of Ribeirao Preto, University of Sao Paulo, São Paulo, 2009. Acknowledging that a child has a chronic disease throws parents into a crisis related to expectations of a desired idealized descendant. The family is uncertain about disease evolution and possible consequences. However, it is the mother, who as a rule, becomes the main caretaker, helping to supply all necessities but showing a occupational life full of short-comings caused by spent time and physical and emotional energy. Her quality of life is further compromised by the suffered losses and work burden. This study aimed to investigate changes in the daily life of primary caretakers of patients diagnosed with Difficult to Control Child Epilepsy associated to non-evolutive chronic encephalopathy , and to evaluate effects of the overload as a function of disease onset on the quality of life. Perception by caretakers of disturbances in their own quality of life by the emotional burden was also verified. The fifty caretakers evaluated were taking care, for at least two years, of children 7 to 12 years old, from both sexes and with a confirmed diagnosis of five years. The study was approved by the Ethics Committee on Research with Human Beings of the University Hospital, Faculty of Medicine of Ribeirao Preto, University of Sao Paulo (HCFMRP) and was conducted at the Child Epilepsy Service of the same Hospital. Data were obtained through the children medical records, half-structured interviews addressing onset of the disease and daily care, and completion of the overload questionnaires ,Caregiver Burden Scale and Quality of Life, WHOQOL-bref. Data from interviews were analyzed by the Interpretation Quantitative System and the ones from WHOQOL-bref and Caregiver Burden Scale submitted to statistical analysis according to the rules of the instruments. Using the quadrant technique and analysis of the non-parametric Spearman coefficient, the data were further correlated to verify the existence of a relationship between aspects of burdened daily life and perception of their quality of life by caretakers. Results showed that the act of care did produce changes in the life of the caretaker, characterized by decreased socializing , disturbed professional life and stress . Considering quality of life, environmental factors were more satisfying than the ones of social relations, emphasizing the importance of social support in the life of a caretaker. As to the variable related to care duration, the longer it lasted the higher satisfaction in psychological well being, environment and social interchange were achieved . Two types of burdens were identified, one concealed and one declared. It is concluded that onset of disease in children does directly interfere in the daily life and relationships of caretakers, thus in their quality of life. However, by showing the contribution of structural and emotional resources to minimize the negative effects on caretakers, the importance of supportive information, techniques and exchange of experiences provided by a multi-professional team is also emphasized.

A Saúde da Família (ESF) é o modelo de organização da Atenção Básica com maior cobertura populacional no Brasil. Esta alcançou alguns resultados relevantes para a saúde da população, embora diversos problemas persistam na sua efetivação. Entendemos ser possível e necessário interrogarmos a ESF enquanto modelagem assistencial. Os arranjos e diretrizes propostos foram eficazes para o enfrentamento de problemas autolimitados. Mas no manejo das condições crônicas de adoecimento há muito que refletir. Apresenta-se então o desafio de problematizarmos a Saúde da Família a partir das interfaces produzidas por profissionais de saúde e usuários com condições crônicas de adoecimento, em particular o diabetes mellitus tipo 2, identificando e analisando os dispositivos de saber-poder que opera-se no cotidiano dos serviços. Produzimos neste estudo uma aproximação prolongada ao trabalho de duas equipes e unidades de saúde da família do município de Vitória-ES, de natureza cartográfica e micropolítica, feita por meio de observação participante, com produção de diário de campo em reuniões de equipe, atividades de grupo, visitas domiciliares, andanças pelos territórios e interações com profissionais e usuários nas diversas ações realizadas pelas equipes de saúde, bem como entrevistas semiestruturadas com onze usuários. Como resultados, identificamos que a programação da atenção orienta parte significativa dos processos de trabalho da equipe, sendo que esta é reforçada por uma série de iniciativas da gestão do município no sentido de estabelecer e exigir o cumprimento de metas e indicadores. E essa programação da atenção agencia processos de trabalho enrijecidos, até mesmo burocráticos, fortemente atrelados ao modelo médico hegemônico e centrados nas demandas dos próprios profissionais, não havendo espaço para a singularidade do encontro entre trabalhadores e usuários. A resultante disto é a não consideração do usuário como centro do cuidado. E ao não encontrarem ressonância em termos de mudança efetiva nos estilos de vida das pessoas, os profissionais veem os usuários como rebeldes, considerando a rebeldia em uma conotação negativa, como sinal da adoção de referenciais incorretos e desqualificados para manejar esse tipo de problema segundo o saber científico. As equipes não agenciam os encontros de forma a produzir uma potente circulação de afetos nessa relação de forma a permitir a expressão da autonomia dos indivíduos na produção de sua vida enquanto força instituinte de formas mais inventivas de viver, a construir projetos terapêuticos de maneira compartilhada e contribuir para a promoção de mais intensas conexões de vida. Mas os usuários, apesar de todas as iniciativas de controle e disciplinarização, produzem inúmeras linhas de fuga, resistindo às recomendações e construindo seu próprio modo de cuidar de si. Desta forma, apesar de estar cristalizada a ideia da ESF como espaço de promoção da saúde, concluímos que este modelo de atenção agencia e reforça seu oposto. Tem-se uma ESF preventivista, higienista e disciplinadora que normaliza e empobrece a vida. Torna-se então fundamental problematizar a ESF em sua intensidade política por controle, disciplinarização e regulação de corpos e populações. / Family Health Strategy (FHS) is the organizational model of Primary Care with the highest population coverage in Brazil. It has achieved some significant results for people\'s health, although several problems still persist in its implementation. We believe it is possible and necessary to question FHS while assistance modeling. The proposed arrangements and guidelines were effective for coping with self-limiting problems. But in the management of chronic conditions, there is much to reflect. There is the challenge of problematizing FHS from interfaces produced by healthcare professionals and patients with the chronic conditions, particularly type-2 diabetes mellitus, identifying and analyzing the knowledge-power devices that operate in everyday services. This study shows an extended approach to the work of two health teams and family health units in the city of Vitória-ES, of cartographic and micropolitic nature, made through participant observation, with production of field diary in team meetings, group activities, home visits, travels through territories and interactions with professionals and users in the various actions taken by health teams, as well as semi-structured interviews with eleven users. As a result, we identified that care scheduling guides significant part of team work processes, which is enhanced by a number of municipal management initiatives to establish and enforce goals and indicators. This care scheduling (programação da atenção) supports stiff work processes, even bureaucratic works, strongly linked to the hegemonic medical model and focused on the demands of professionals themselves, with no room for the uniqueness of the encounter between health workers and users. The result is that the user is not considered as the center of care. And by not finding resonance in terms of effective change in the \"lifestyles\" of people, professionals see users as rebels, considering the rebellion in a negative connotation, as a sign of adopting erroneous and unqualified references to handle this kind of problem according to scientific knowledge. Teams do not support meetings to produce a powerful circulation of affects in this relationship in order to allow the expression of autonomy of individuals in the production of their lives while instituting force of more inventive ways of living, to build therapeutic projects in a shared manner and contribute to the promotion of more intense connections of life. But users, despite all control and disciplining initiatives, produce numerous lines of escape, resisting recommendations and building their own way to care for themselves. Thus, although the idea of FHS is crystallized as a health promotion space, we conclude that this care model supports and reinforces its opposite. There is a preventative, hygienist and disciplinarian FHS, which normalizes and impoverishes life. It then becomes important to question FHS in its politica.

Hepatitis C is a fast growing infectious disease in Australia and is often associated with related psycho-social and mental health problems. The conventional treatment process for hepatitis C is challenging due to a number of reasons. This study explored social workers’ perceptions of the contribution of their role in hepatitis C treatment centres in relation to the treatment experience of patients. The roles that social workers fulfill, their contribution to the multidisciplinary team and towards a culturally competent service, were explored. Furthermore the knowledge, skills and values required for providing a competent service in a hepatitis C treatment setting was explored. The broad theoretical frameworks that inform social work practice were considered, especially the biopsycho-social model, the strengths perspective, the critically reflexive approach and communications theory. This qualitative study used a semi-structured interview method for data collection. Ten social workers in hepatitis C treatment clinics participated in the study. The findings highlight the needs of patients and how social worker participants described helping to address and meet these needs by employing their knowledge, skills and values through their social work roles and interventions in a team context in a multicultural and multi-faceted work environment. A major challenge that social workers described was to keep patients on treatment despite debilitating side effects that diminish patients' motivation to complete treatment. A shortcoming in the service was described to be the limited psychiatric support available at many treatment centres. The findings lead to a number of recommendations to improve social work services in hepatitis C treatment settings. More research was recommended in areas such as motivational techniques, psychiatric support, and effective group work strategies. The need for increased funding for social work positions in the hepatitis C field was also highlighted. It is anticipated that findings of this study can be applied to hepatitis C treatment in broader settings such as prisons, drug and alcohol settings and general practice. This research will contribute to literature in the field of hepatitis C treatment models and in the field of social work practice in hepatitis C contexts.