O estudo apresenta o desenvolvimento e validação de um instrumento genérico de avaliação da Qualidade de Vida, no âmbito dos indicadores biopsicossociais, junto à Comunidade da USP - Campus São Paulo. Por ter grande profusão teórica, optou-se por definir Qualidade de Vida como a percepção individual de bem-estar, sustentada pelo equilíbrio do tripé biopsicossocial; entendendo, portanto, que o homem é um ser integrado nessas três dimensões. Adotou-se como ponto de partida para o desenvolvimento do instrumento, o modelo apresentado por Kertesz e Kerman (1985), tendo como base a teoria do conceito de investigação dos aspectos biológico, psicológico e social. A metodologia fundamenta-se em análises estatísticas pertinentes à psicometria. Uma amostra de 947 pessoas, de ambos os sexos, em faixas etárias a partir de 18 anos, foi usada. Foram investigados aspectos demográficos, socioeconômicos, saúde e avaliação do estado nutricional (IMC), para obtenção do perfil dos participantes, utilizando-se questão fechada e de múltipla escolha. Após o pré-teste, foram realizados os procedimentos analíticos: análise de confiabilidade, validade e fidedignidade. O resultado foi o novo Instrumento composto por 55 itens, dos 68 propostos inicialmente, e nove domínios, demonstrando bom desempenho psicométrico. Todos os domínios apresentaram um resultado final de Alfa Total com nível satisfatório (Alfa Total 0,8913, variando de 0,7032 a 0,9255), exceto o da Dimensão Hábitos Alimentares, que obteve o menor resultado (Alfa = 0,4993) e, por questões metodológicas, esse domínio foi mantido. A validade do instrumento, obtida segundo a realização da Análise Fatorial, definiu que o instrumento contivesse nove fatores, todos com autovalores maiores do que um, além de algumas modificações. A fidedignidade, análise da estabilidade por meio do teste-reteste, apresentou um resultado adequado. Conclui-se que as estratégias de análises demonstraram que os índices obtidos atenderam as exigências metodológicas e que o instrumento final apresentou confiabilidade e validade. / This study shows the development and validation of a generic instrument of evaluation of quality of life, within the ambit of biopsychosocial indicators along with USP Community - Campus of São Paulo. The methodology is based on statistical analysis belong to Psychometrics. A sample of 947 people, from both sexes, with different age groups since 18 years old, was used. In order to get a profile from the participants, demographic, health and socioeconomic aspects were analyzed, besides the evaluation of their nutritional state (CMI), through multiple choice and closed questions. It was used Kertesz and Kerman\'s (1985) instrument as a model, based on the concept of investigation of biopsychosocial aspects. After the pre-test, the analytic procedures were done: analysis of faithfulness, validity and reliability. The result was a new instrument compound by 55 items - of 68 initially proposed - and nine domains, which showed a good psychometric performance. All the domains demonstrated a final result of Total Alpha with an acceptable level (Total Alpha 0,8913, varying from 0,7032 to 0,9255), excepting the level of Dimension Eating Habits, which got the lowest result (Alpha = 0,4993); however it was kept because of methodological matters. The validity of the instrument, got according the Factorial Analysis, defined that the instrument had some modifications, besides nine factors with self values bigger than one. The reliability, analysis of the stability through test-retest, showed a satisfactory result. In conclusion, the analysis strategies demonstrated that the results met with the methodological requirements and that the final instrument is faithful and valid, less complex and practical during its employment.

O Plano de Atenção Gerontológica (PAGe), instrumento desenvolvido no Bacharelado em Gerontologia da Universidade de São Paulo, possui uma escala de avaliação multidimensional de idosos (AMI) que ainda não foi submetida ao processo de validação. Objetivo geral: realizar a validação de conteúdo da AMI do PAGe. Métodos: A validade de conteúdo foi realizada nas seguintes etapas: 1) revisão sistemática de instrumentos de avaliação multidimensional de idosos validados na língua inglesa: os descritores \"geriatric assessment\", \"validity\", \"reliability\" e \"elderly\" foram associados e pesquisados em quatro bases de dados. Os artigos foram selecionados por dois avaliadores após aplicação dos critérios de inclusão. Pesquisas adicionais foram feitas na tentativa de encontrar adaptações/validações para a população brasileira; 2) definição das bases conceituais: estudo aprofundado sobre como domínios/itens foram medidos por outros pesquisadores; 3) análise do desenvolvimento da escala: itens avaliados e modificados considerando: ambiguidade, comprimento, dificuldade de leitura, múltiplas negativas e duplo-caminho; e 4) avaliação do comitê de especialistas: profissionais experts em avaliação multidimensional do idoso analisaram o conteúdo do instrumento. Foram seguidos métodos sistemáticos para coleta de dados: carta convite, termo de consentimento livre e esclarecido, formulário de caracterização dos participantes, carta explicativa e questionário de avaliação dos itens/domínios. A concordância entre os especialistas foi analisada considerando os valores críticos da Content Validity Ratio (CVR) (nível de significância de p<0,02). Resultados: Foram encontradas 14 escalas validadas, na maioria voltadas para identificação de fragilidade e demandas/risco de saúde. Os domínios mais frequentes foram suporte social (100%) e capacidade funcional (92,8%), enquanto o menos presente foi sobre violência (7,1%). Todas as escalas apresentaram índices de confiabilidade, seguidos por validade de critério concorrente e conteúdo (78,5%, ambas). Validades de face (21,4%) e construto (21,4%) foram menos prevalentes. Na validação do conteúdo da AMI do PAGe seu construto foi definido, suas bases conceituais foram devidamente descritas e seus itens modificados para melhor qualidade psicométrica. O comitê foi constituído por dez especialistas. A partir do cálculo das CVRs, 42,7% dos 103 itens foram validados, 50,4% modificados, 5,8% excluídos e 0,9% mantidos sem modificações. As médias das CVRs da escala inteira nos quesitos clareza e pertinência são 0,78 e 0,95, respectivamente. Foram feitas alterações no layout e nas instruções do instrumento, excluídas as propostas de escores e incluídos sete itens. Conclusão: As escalas encontradas na revisão são mais voltadas para a área da saúde e apresentam limitações em suas validações. Há escassez de instrumentos originados no Brasil e validados para idosos brasileiros. Esta pesquisa proporcionou a identificação do construto latente da AMI pertencente ao PAGe, a qual passou a ser denominada escala de Vulnerabilidade Biopsicossocial do Idoso (VBI). O conteúdo dessa escala não foi totalmente validado, contudo os itens mantidos na mesma foram todos considerados pertinentes. Neste panorama, espera-se que a escala VBI do PAGe venha contribuir para o campo de instrumentos avaliativos da população idosa brasileira e que este trabalho contribua para maior interesse em estudos de avaliação psicométrica e uso crítico de instrumentos / The Gerontological Care Plan (originally called Plano de Atenção Gerontológica -PAGe), developed in the Bachelor of Gerontology of the University of São Paulo, has a scale of multidimensional assessment of the elderly (MAE) that has not been yet submitted to a validation process. General objective: to determine the content validation of the MAE of the PAGe. Methods: Content validity was performed in the following stages: 1) systematic review of multidimensional assessment tools for elderly validated in the English language: the descriptors \"geriatric assessment\", \"validity\", \"reliability\" and \"elderly\" were associated and searched in four databases. The articles were selected by two researchers after applying the inclusion criteria in the abstracts/titles and full articles. Additional research was done in an attempt to find adaptations/validations for the Brazilian population; 2) definition of the conceptual bases: an in-depth study on how domains/items were measured by other researchers; 3) analysis of the development of the instrument: the items were evaluated and modified considering: ambiguity, length, reading difficulty, multiple negatives and double barreled; and 4) evaluation of the specialists committee: experts in multidimensional assessment analyzed the content of the instrument. Systematic methods for data collection were followed: invitation letter, informed consent form, participant characterization form, explanatory letter and questionnaire to evaluate the items/domains. The agreement among the experts was analyzed considering the critical values of the content validity ratio (CVR) (significance level of p <0.02). Results: A total of 14 validated scales were found, mostly focused on the identification of frailty and demands / health risk. The most frequent domains were social support (100%) and functional capacity (92.8%), while the least present was violence (7.1%). All scales presented reliability indices, followed by validity of concurrent criterion and content (78.5%, both). Validities of face (21.4%) and construct (21.4%) were less prevalent. In the content validation of the MAE of the PAGe its construct was defined, its conceptual bases were properly described and its items modified for better psychometric quality. The committee consisted of ten specialists. From the CVR calculation, 42.7% of the 103 items were validated, 50.4% modified, 5.8% excluded and 0.9% maintained unchanged. The CVR averages of the entire instrument in the clarity and relevance questions are 0.78 and 0.95, respectively. Changes were made to the layout and instructions of the instrument, proposed scores were excluded and seven items were included. Conclusion: The scales retrieved in the systematic review are more focused on the healthcare field and have limitations in their validations. No instrument was originally developed in Brazil and fewer were validated for Brazilian elderly. This research provided the identification of the latent AMI construct belonging to the PAGe, which was renamed scale of Biopsychosocial Vulnerability of the Elderly (BVE). The content of this scale was not fully validaded, however the items kept in it were all considered pertinent. Finally, it is expected that BVE would contribute to the field of evaluation instruments for Brazilian elderly population and that the present study contributes to an increase interest in psychometric evaluation and critical use of instruments

There has been inadequate attention to the aftercare of psychiatric patients, resulting in an increase in readmission rates plus longer hospital stays. There is a gap in the aftercare for psychiatric patients; The purpose of this qualitative retrospective study is to explore what may have contributed to readmission for psychiatric patients. The biopsychosocial model was used as the theoretical framework to support the direction of the research. The health belief model and transtheoretical model of change were used to further support for biopsychosocial model. The research questions were created to determine the influences on readmission, psychological well-being, explore the adaptation to aftercare and narrative of aftercare from the caregiver. This study used a content analysis to identify patterns and themes with a total of 10 participants. The data used had been previously collected by the behavioral transition team at Houston Methodist Hospital which consists of case notes, mental health diagnoses, hospital history and reasons for readmission. The findings include reports of psychiatric patients not adhering to their prescribed medication due to its side effects or cost, caregivers feeling overwhelmed, and the importance of psychoeducation. Once adjustments were made to the dosage or a prescription for less expensive medication, adherence improved, regular attendance to therapy sessions occurred, and the increase in the level of frustration from the caregiver. Psychiatric patients can benefit in post-discharge care if there is more focus on the reasons for hospital readmission by developing a treatment plan for the prevention of a relapse. This study may improve patient vulnerability to mental health issues and to assist psychiatric patients in establishing balance in their lives.

Background and aims: This interdisciplinary thesis was designed to deepen understanding of the co-morbidity of anxiety and depression with chronic diseases of the digestive tract, and inflammatory bowel disease (IBD) in particular. The first part of the thesis aimed to explore the prevalence of psychological problems in IBD compared to irritable bowel syndrome (IBS) and chronic hepatitis C (HCV) groups. It also explored the relationship between the number of co-morbid functional gastrointestinal disorders and the severity of psychological problems in IBD and IBS. It also aimed to determine whether there is a relationship between psychological problems and the response to standard medical treatment/physical outcomes in patients with IBD, IBS and HCV. Furthermore, it aimed to explore whether disclosure of the psychological status of depressed and/or anxious IBD patients to their gastroenterologists influences doctors’ behaviour and affects patients’ responses to treatment/physical outcomes. The second part of the thesis aimed to investigate the potential role of antidepressants in IBD and to determine the feasibility of future randomised controlled trials on the role of antidepressants in IBD. Methods: Overall, a cohort of 139 outpatients (64 IBD, 41 HCV, and 34 IBS) and 18 gastroenterologists participated in the six studies comprising this thesis. A mixed methods design was applied. Two cross-sectional studies, an observational cohort prospective management study, a randomised controlled trial, a systematic review and an exploratory interview study were conducted. Differences between the groups for continuous variables were assesed with one way analysis of variance (ANOVA) and independent samples ttests. Differences in categorical variables were assessed with contingency tables with the Chi-Square test and the Fisher’s Exact Test. Propsective analyses were conducted with repeated measures ANOVA, logistic regression and Poisson regression. Qualitative data were analysed using content analysis. Results: Overall, 42% of participants were anxious and 19% were depressed. Participants with HCV had higher levels of psychological impairment compared with the IBS, the IBD group and the general population (p<0.05). Those IBD participants with fewer co-morbid functional disorders had better physical quality of life than participants with a greater number of these disorders (p=0.025). Moreover, depression/anxiety at baseline did not explain medical outcomes after 12 months in this cohort of patients with chronic diseases of the digestive tract. Doctors’ knowledge of patients’ psychological status was found to have no impact on IBD patients’ outcomes after 12 months. However, interestingly, the level of anxiety in IBD participants significantly dropped between the baseline and nine months indicating a possible benefit from participating in the study. In the literature review, insufficient evidence was found to conclude that antidepressants are efficacious for treatment of psychological co-morbidities or somatic complaints in IBD. However, the qualitative interview study indicated a potential positive impact of treatment with antidepressants on coping with disease symptoms and general wellbeing in patients with IBD. Conclusion: The thesis confirms that there is a significant burden of psychological co-morbidity in patients with chronic gastroenterological diseases. Interdisciplinary approaches to the management of these diseases are therefore warranted in Australian gastroenterology clinics. Anxiety targeted interventions and research in this setting are urgently needed, especially with respect to patients with HCV. Larger studies exploring the gastroenterologists’ role in treatment of co-morbid psychological problems in their patients are recommended. Longer prospective studies on homogenous samples of patients are also needed to clarify the nature of the relationship between psychological problems and relapse of somatic symptoms. Finally, randomised controlled trials exploring the efficacy of antidepressants in IBD are warranted. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1321006 / Thesis (Ph.D.) -- University of Adelaide, School of Population Health and Clinical Practice, 2008

At the most general level, this project seeks to engage the question, "What is disability?" The conceptual exploration is undertaken against the background of the philosophical literature addressing the nature of disease, illness, and disability. This work contends that much of the literature bearing on the nature of disability fails to distinguish sufficiently between different domains of philosophical explanation and concern--ontological, non-moral normative, and moral normative, respectively. Specifically, this involves a failure to distinguish among (a) disputes regarding the proper ontological characterization of disability, particularly as expressed in medical-scientific explanations of the phenomenon; (b) disputes regarding the role of non-moral (aesthetic, epistemic, cultural) values or norms in the constitution of those explanations (i.e., non-moral normative concerns); and (c) disputes regarding moral and political considerations that shape the character of the social reality within which persons with disabilities live (i.e., moral normative concerns). This work advances the thesis that disabilities, like diseases, are "natural," in the sense that they are not mere social constructions, but that values of various sorts nevertheless do enter into the identification of states of affairs as disability, and that the "disability" designation has important socio-cultural implications that are inevitably the subject of ongoing political negotiation. Specifically, this work argues that "disability" involves a complex interplay of ontological realities, non-moral normative, and moral normative considerations or values. This interplay is captured well by a "biopsychosocial" (BPS) approach to disability, one which incorporates these various considerations into a single account, involving an integration of different levels of explanation (biological, psychological, social) of the disability phenomenon. This work first develops the theoretical underpinnings and rationale for a BPS approach to disability (Chs. 1-3), then explores in detail some of the relevant ontological (Ch. 4), non-moral and moral normative (Ch. 5), and sociological and political (Ch. 6) considerations that enter into the identification of states of affairs as "disability," concluding (in Ch. 7) with a brief consideration of some of the study's implications for understanding the nature of disability, the future of disability studies and the disability rights movement, and the relationship between the disabled and the broader society.

Background and aims: This interdisciplinary thesis was designed to deepen understanding of the co-morbidity of anxiety and depression with chronic diseases of the digestive tract, and inflammatory bowel disease (IBD) in particular. The first part of the thesis aimed to explore the prevalence of psychological problems in IBD compared to irritable bowel syndrome (IBS) and chronic hepatitis C (HCV) groups. It also explored the relationship between the number of co-morbid functional gastrointestinal disorders and the severity of psychological problems in IBD and IBS. It also aimed to determine whether there is a relationship between psychological problems and the response to standard medical treatment/physical outcomes in patients with IBD, IBS and HCV. Furthermore, it aimed to explore whether disclosure of the psychological status of depressed and/or anxious IBD patients to their gastroenterologists influences doctors’ behaviour and affects patients’ responses to treatment/physical outcomes. The second part of the thesis aimed to investigate the potential role of antidepressants in IBD and to determine the feasibility of future randomised controlled trials on the role of antidepressants in IBD. Methods: Overall, a cohort of 139 outpatients (64 IBD, 41 HCV, and 34 IBS) and 18 gastroenterologists participated in the six studies comprising this thesis. A mixed methods design was applied. Two cross-sectional studies, an observational cohort prospective management study, a randomised controlled trial, a systematic review and an exploratory interview study were conducted. Differences between the groups for continuous variables were assesed with one way analysis of variance (ANOVA) and independent samples ttests. Differences in categorical variables were assessed with contingency tables with the Chi-Square test and the Fisher’s Exact Test. Propsective analyses were conducted with repeated measures ANOVA, logistic regression and Poisson regression. Qualitative data were analysed using content analysis. Results: Overall, 42% of participants were anxious and 19% were depressed. Participants with HCV had higher levels of psychological impairment compared with the IBS, the IBD group and the general population (p<0.05). Those IBD participants with fewer co-morbid functional disorders had better physical quality of life than participants with a greater number of these disorders (p=0.025). Moreover, depression/anxiety at baseline did not explain medical outcomes after 12 months in this cohort of patients with chronic diseases of the digestive tract. Doctors’ knowledge of patients’ psychological status was found to have no impact on IBD patients’ outcomes after 12 months. However, interestingly, the level of anxiety in IBD participants significantly dropped between the baseline and nine months indicating a possible benefit from participating in the study. In the literature review, insufficient evidence was found to conclude that antidepressants are efficacious for treatment of psychological co-morbidities or somatic complaints in IBD. However, the qualitative interview study indicated a potential positive impact of treatment with antidepressants on coping with disease symptoms and general wellbeing in patients with IBD. Conclusion: The thesis confirms that there is a significant burden of psychological co-morbidity in patients with chronic gastroenterological diseases. Interdisciplinary approaches to the management of these diseases are therefore warranted in Australian gastroenterology clinics. Anxiety targeted interventions and research in this setting are urgently needed, especially with respect to patients with HCV. Larger studies exploring the gastroenterologists’ role in treatment of co-morbid psychological problems in their patients are recommended. Longer prospective studies on homogenous samples of patients are also needed to clarify the nature of the relationship between psychological problems and relapse of somatic symptoms. Finally, randomised controlled trials exploring the efficacy of antidepressants in IBD are warranted. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1321006 / Thesis (Ph.D.) -- University of Adelaide, School of Population Health and Clinical Practice, 2008

Esta dissertação de mestrado trata sobre a experiência de crescer com fibrose cística (FC) e sobre as implicações das peculiaridades da doença para a qualidade de vida (QV) de seus portadores. Antes considerada uma doença infantil, o desenvolvimento tecnológico da medicina tem levado os pacientes com FC a sobreviver até a idade adulta. Esse aumento da expectativa de vida tornou uma prioridade entender o que os pacientes pensam a respeito da doença, do tratamento e de sua vida. A revisão desta dissertação está dividida em três capítulos: Fibrose cística, Saúde e doença e Qualidade de vida. O primeiro trata sobre histórico, diagnóstico, curso, evolução, tratamento da doença e sobre aspectos psicossocioespirituais correspondentes. No segundo, discute-se sobre estresse, estratégias de coping, religiosidade, apoio social, depressão, otimismo, pessimismo e sistema imune e sobre as implicações destes fatores para o processo saúde-doença e para o desenvolvimento de estratégias de promoção da saúde na FC. No último capítulo, são apresentadas divergências conceituais e teóricas no campo da QV. O objetivo maior deste trabalho é fornecer informações relevantes, a partir da perspectiva dos pacientes, para embasar o desenvolvimento de estratégias de intervenção. Discutem-se as diferenças entre QV, qualidade de vida relacionada à saúde (QVRS) e QV relacionada a uma condição específica, bem como as repercussões dessas conceituações para a mensuração da QV. A revisão da literatura e a própria coleta dos dados criaram objetivos específicos que deram origem a dois estudos. No Estudo 1, “A experiência de crescer com fibrose cística: Um estudo qualitativo”, procurou-se identificar as dificuldades enfrentadas pelos pacientes, os fatores facilitadores da aceitação e da adaptação à doença, entender a relação estabelecida com o tratamento e sua repercussão na perspectiva de futuro dos pacientes. No Estudo 2, “Percepção de qualidade de vida em portadores de fibrose cística: Considerações metodológicas”, explorou a perspectiva dos entrevistados sobre os aspectos determinantes de sua QV, investigou relações entre saúde e QV e apontou domínios que devem estar presentes em escalas de avaliação da QV na FC. A análise dos dados do segundo estudo criou o objetivo adicional de verificar em que medida os instrumentos atualmente utilizados para a avaliação da QV na FC contemplam os domínios valorizados pelos pacientes. Os participantes foram pessoas com FC maiores de 18 anos; fizeram parte de ambos os estudos e foram entrevistados em apenas um encontro. As entrevistas foram transcritas na íntegra e os dados foram analisados qualitativamente. No final desta dissertação, o Capítulo 5 apresenta uma discussão do conjunto dos achados e de sua implicância para o desenvolvimento e o incremento de estratégias de intervenção para promoção da QV e da saúde. / This master’s thesis addresses the experience of growing up with cystic fibrosis (CF) and the impact of the peculiarities of this illness on the patients’ quality of life (QOL). Previously considered a disease of childhood, the technological increment in medicine made it possible for CF patients to survive up to adulthood. This increase in life expectancy has made the understanding of the patients’ ideas concerning their life, illness and its treatment a priority. The literature review is divided in three chapters: Cystic Fibrosis, Health and Illness, and Quality of Life. Chapter 1 presents the history of the disease, diagnosis, course, outcome and treatment, and the correspondent psychosocialspiritual aspects. In chapter 2, the relationship between stress, coping, spirituality, social support, depression, optimism and the immune system are discussed, as well as the implications of these aspects on the process of health and illness and to the development of health promoting strategies in CF. The study also addressed the patient-treatment relationship and its impact in the patients’ future perspectives. Study 2, “Quality of life perceptions in patients with cystic fibrosis: Methodological considerations”, explored the participants’ perspective on defining the determinants of their QOL, investigated the relationship between health and QOL, and pointed out domains that should be present in scales for the measurement of QOL in CF. Data analysis of the second study generated an additional objective: to verify the extension in which the current instruments to assess QOL in CF contemplate the domains valued by the patients. Participants were CF patients over 18; they took part in both studies and were interviewed only once. The interviews were recorded and transcribed as verbatim. The data received qualitative analysis. In the end of this thesis, Chapter 5 presents a discussion of the findings of both studies and of their implications to the development and improvement of intervention strategies to the promotion of health and QOL.

Esta dissertação de mestrado trata sobre a experiência de crescer com fibrose cística (FC) e sobre as implicações das peculiaridades da doença para a qualidade de vida (QV) de seus portadores. Antes considerada uma doença infantil, o desenvolvimento tecnológico da medicina tem levado os pacientes com FC a sobreviver até a idade adulta. Esse aumento da expectativa de vida tornou uma prioridade entender o que os pacientes pensam a respeito da doença, do tratamento e de sua vida. A revisão desta dissertação está dividida em três capítulos: Fibrose cística, Saúde e doença e Qualidade de vida. O primeiro trata sobre histórico, diagnóstico, curso, evolução, tratamento da doença e sobre aspectos psicossocioespirituais correspondentes. No segundo, discute-se sobre estresse, estratégias de coping, religiosidade, apoio social, depressão, otimismo, pessimismo e sistema imune e sobre as implicações destes fatores para o processo saúde-doença e para o desenvolvimento de estratégias de promoção da saúde na FC. No último capítulo, são apresentadas divergências conceituais e teóricas no campo da QV. O objetivo maior deste trabalho é fornecer informações relevantes, a partir da perspectiva dos pacientes, para embasar o desenvolvimento de estratégias de intervenção. Discutem-se as diferenças entre QV, qualidade de vida relacionada à saúde (QVRS) e QV relacionada a uma condição específica, bem como as repercussões dessas conceituações para a mensuração da QV. A revisão da literatura e a própria coleta dos dados criaram objetivos específicos que deram origem a dois estudos. No Estudo 1, “A experiência de crescer com fibrose cística: Um estudo qualitativo”, procurou-se identificar as dificuldades enfrentadas pelos pacientes, os fatores facilitadores da aceitação e da adaptação à doença, entender a relação estabelecida com o tratamento e sua repercussão na perspectiva de futuro dos pacientes. No Estudo 2, “Percepção de qualidade de vida em portadores de fibrose cística: Considerações metodológicas”, explorou a perspectiva dos entrevistados sobre os aspectos determinantes de sua QV, investigou relações entre saúde e QV e apontou domínios que devem estar presentes em escalas de avaliação da QV na FC. A análise dos dados do segundo estudo criou o objetivo adicional de verificar em que medida os instrumentos atualmente utilizados para a avaliação da QV na FC contemplam os domínios valorizados pelos pacientes. Os participantes foram pessoas com FC maiores de 18 anos; fizeram parte de ambos os estudos e foram entrevistados em apenas um encontro. As entrevistas foram transcritas na íntegra e os dados foram analisados qualitativamente. No final desta dissertação, o Capítulo 5 apresenta uma discussão do conjunto dos achados e de sua implicância para o desenvolvimento e o incremento de estratégias de intervenção para promoção da QV e da saúde. / This master’s thesis addresses the experience of growing up with cystic fibrosis (CF) and the impact of the peculiarities of this illness on the patients’ quality of life (QOL). Previously considered a disease of childhood, the technological increment in medicine made it possible for CF patients to survive up to adulthood. This increase in life expectancy has made the understanding of the patients’ ideas concerning their life, illness and its treatment a priority. The literature review is divided in three chapters: Cystic Fibrosis, Health and Illness, and Quality of Life. Chapter 1 presents the history of the disease, diagnosis, course, outcome and treatment, and the correspondent psychosocialspiritual aspects. In chapter 2, the relationship between stress, coping, spirituality, social support, depression, optimism and the immune system are discussed, as well as the implications of these aspects on the process of health and illness and to the development of health promoting strategies in CF. The study also addressed the patient-treatment relationship and its impact in the patients’ future perspectives. Study 2, “Quality of life perceptions in patients with cystic fibrosis: Methodological considerations”, explored the participants’ perspective on defining the determinants of their QOL, investigated the relationship between health and QOL, and pointed out domains that should be present in scales for the measurement of QOL in CF. Data analysis of the second study generated an additional objective: to verify the extension in which the current instruments to assess QOL in CF contemplate the domains valued by the patients. Participants were CF patients over 18; they took part in both studies and were interviewed only once. The interviews were recorded and transcribed as verbatim. The data received qualitative analysis. In the end of this thesis, Chapter 5 presents a discussion of the findings of both studies and of their implications to the development and improvement of intervention strategies to the promotion of health and QOL.

p. 1-184 / Submitted by Santiago Fabio (fabio.ssantiago@hotmail.com) on 2013-04-25T20:05:10Z No. of bitstreams: 3 Gilka%20Parte%201.pdf: 38647 bytes, checksum: 09b3df0d357381c502253361418b8e27 (MD5) GILKA%20PARTE%202.pdf: 368828 bytes, checksum: a62f67b971d3a89834406553f1971558 (MD5) GILKA%20PARTE%203.pdf: 580562 bytes, checksum: 49ea1a3b8ae194523fd311a1f9c4b910 (MD5) / Approved for entry into archive by Maria Creuza Silva(mariakreuza@yahoo.com.br) on 2013-05-04T16:52:14Z (GMT) No. of bitstreams: 3 Gilka%20Parte%201.pdf: 38647 bytes, checksum: 09b3df0d357381c502253361418b8e27 (MD5) GILKA%20PARTE%202.pdf: 368828 bytes, checksum: a62f67b971d3a89834406553f1971558 (MD5) GILKA%20PARTE%203.pdf: 580562 bytes, checksum: 49ea1a3b8ae194523fd311a1f9c4b910 (MD5) / Made available in DSpace on 2013-05-04T16:52:14Z (GMT). No. of bitstreams: 3 Gilka%20Parte%201.pdf: 38647 bytes, checksum: 09b3df0d357381c502253361418b8e27 (MD5) GILKA%20PARTE%202.pdf: 368828 bytes, checksum: a62f67b971d3a89834406553f1971558 (MD5) GILKA%20PARTE%203.pdf: 580562 bytes, checksum: 49ea1a3b8ae194523fd311a1f9c4b910 (MD5) Previous issue date: 2007 / As diversas concepções de saúde e doença estão envolvidas em dualismos como o do Corpo X Mente e o de Indivíduo X Sociedade. No entanto, a saúde e a doença integram corpo,mente, emoção, espírito e relações sociais suscitando uma abordagem integral ou biopsicossocial, que no caso, estamos sugerindo contribuições da psicologia analítica de Jung diante da concepção holística do sujeito. A dimensão psicossocial envolve questões psicológicas, sócio-afetivas e sócio-econômicas, além das questões culturais e espirituais. Esta dimensão deve ser assimilada no atendimento médico que visa esta abordagem biopsicossocial, estimulando a participação do sujeito numa prática de acolhimento, onde são reforçados a escuta, o diálogo e a narrativa da experiência e significados, envolvendo a família e a comunidade, figurando num contexto propiciador da ação educativa dialógica. O PSF situa-se na proposta de reorientação do modelo assistencial que figura no princípio da integralidade, onde estimula-se a atenção integral ou biopsicossocial, além do incentivo de aspectos preventivos aliados aos curativos, atendimento interdisciplinar e intersetorial. O presente estudo teve como objetivo a compreensão da percepção de 10 médicos professores de uma instituição-escola nos moldes do PSF sobre a dimensão psicossocial. Nesta proposta realizou-se análise do discurso das entrevistas coletadas seguindo a hipótese de que não há uma sistematização e integração de conceitos do que seja esta dimensão nem criação de um roteiro claro e conciso para melhor orientação dos alunos nesta investigação psicossocial que foi incluída na anamnese do atendimento local. Para tanto, além das entrevistas foram observados prontuários preenchidos pelos alunos. A importância da localização da história da doença na história de vida do paciente, contextualizando sua queixa e considerando seu ponto de vista sobre a enfermidade em questão despontam nesta abordagem biopsicossocial, a qual necessita de uma melhora na atual relação médico-paciente, a fim de poder se criar melhores condições para realização desta investigação psicossocial. Acredita-se na importância de uma melhor formação médica para estímulo desta integração biopsicossocial no atendimento que inclui a sistematização da dimensão psicossocial para inclusão na anamnese e assimilação desta dimensão na condução da consulta, além de maior oferta de atendimentos psicológicos para encaminhamentos no sistema de referência (inclusive da atenção básica) e a presença do psicólogo na equipe para trabalho interdisciplinar dentro do PSF, inclusive no caso desta instituição, para complementaridade da consulta de abordagem biopsicossocial. / Salvador

Esta dissertação de mestrado trata sobre a experiência de crescer com fibrose cística (FC) e sobre as implicações das peculiaridades da doença para a qualidade de vida (QV) de seus portadores. Antes considerada uma doença infantil, o desenvolvimento tecnológico da medicina tem levado os pacientes com FC a sobreviver até a idade adulta. Esse aumento da expectativa de vida tornou uma prioridade entender o que os pacientes pensam a respeito da doença, do tratamento e de sua vida. A revisão desta dissertação está dividida em três capítulos: Fibrose cística, Saúde e doença e Qualidade de vida. O primeiro trata sobre histórico, diagnóstico, curso, evolução, tratamento da doença e sobre aspectos psicossocioespirituais correspondentes. No segundo, discute-se sobre estresse, estratégias de coping, religiosidade, apoio social, depressão, otimismo, pessimismo e sistema imune e sobre as implicações destes fatores para o processo saúde-doença e para o desenvolvimento de estratégias de promoção da saúde na FC. No último capítulo, são apresentadas divergências conceituais e teóricas no campo da QV. O objetivo maior deste trabalho é fornecer informações relevantes, a partir da perspectiva dos pacientes, para embasar o desenvolvimento de estratégias de intervenção. Discutem-se as diferenças entre QV, qualidade de vida relacionada à saúde (QVRS) e QV relacionada a uma condição específica, bem como as repercussões dessas conceituações para a mensuração da QV. A revisão da literatura e a própria coleta dos dados criaram objetivos específicos que deram origem a dois estudos. No Estudo 1, “A experiência de crescer com fibrose cística: Um estudo qualitativo”, procurou-se identificar as dificuldades enfrentadas pelos pacientes, os fatores facilitadores da aceitação e da adaptação à doença, entender a relação estabelecida com o tratamento e sua repercussão na perspectiva de futuro dos pacientes. No Estudo 2, “Percepção de qualidade de vida em portadores de fibrose cística: Considerações metodológicas”, explorou a perspectiva dos entrevistados sobre os aspectos determinantes de sua QV, investigou relações entre saúde e QV e apontou domínios que devem estar presentes em escalas de avaliação da QV na FC. A análise dos dados do segundo estudo criou o objetivo adicional de verificar em que medida os instrumentos atualmente utilizados para a avaliação da QV na FC contemplam os domínios valorizados pelos pacientes. Os participantes foram pessoas com FC maiores de 18 anos; fizeram parte de ambos os estudos e foram entrevistados em apenas um encontro. As entrevistas foram transcritas na íntegra e os dados foram analisados qualitativamente. No final desta dissertação, o Capítulo 5 apresenta uma discussão do conjunto dos achados e de sua implicância para o desenvolvimento e o incremento de estratégias de intervenção para promoção da QV e da saúde. / This master’s thesis addresses the experience of growing up with cystic fibrosis (CF) and the impact of the peculiarities of this illness on the patients’ quality of life (QOL). Previously considered a disease of childhood, the technological increment in medicine made it possible for CF patients to survive up to adulthood. This increase in life expectancy has made the understanding of the patients’ ideas concerning their life, illness and its treatment a priority. The literature review is divided in three chapters: Cystic Fibrosis, Health and Illness, and Quality of Life. Chapter 1 presents the history of the disease, diagnosis, course, outcome and treatment, and the correspondent psychosocialspiritual aspects. In chapter 2, the relationship between stress, coping, spirituality, social support, depression, optimism and the immune system are discussed, as well as the implications of these aspects on the process of health and illness and to the development of health promoting strategies in CF. The study also addressed the patient-treatment relationship and its impact in the patients’ future perspectives. Study 2, “Quality of life perceptions in patients with cystic fibrosis: Methodological considerations”, explored the participants’ perspective on defining the determinants of their QOL, investigated the relationship between health and QOL, and pointed out domains that should be present in scales for the measurement of QOL in CF. Data analysis of the second study generated an additional objective: to verify the extension in which the current instruments to assess QOL in CF contemplate the domains valued by the patients. Participants were CF patients over 18; they took part in both studies and were interviewed only once. The interviews were recorded and transcribed as verbatim. The data received qualitative analysis. In the end of this thesis, Chapter 5 presents a discussion of the findings of both studies and of their implications to the development and improvement of intervention strategies to the promotion of health and QOL.