AN ABSTRACT OF THE THESIS OF Tambra J. Kent, for the Master of Science degree in the field of Education in Workforce Education and Development, presented on November 3, 2008, at Southern Illinois University Carbondale. TITLE: THE RELATIONSHIP BETWEEN CHILD CARE ISSUES AND SUCCESSFUL EMPLOYMENT FOR LOW INCOME PARENTS MAJOR PROFESSOR: Dr. Cynthia Sims This mixed method study was considered and carried out to determine the relationship between child care issues and successful employment for low income parents. The study specifically sought to determine if accessibility to affordable and quality child care are barriers to employment for low income working parents who are recipients of the Illinois Child Care Assistance Program and who live in Williamson County, Illinois. There were a total of 117 respondents who participated in the study. A questionnaire was mailed to the study population and used to collect data for the study. Findings revealed that accessibility to affordable and quality child care was not a barrier for the respondents. An inference made regarding these findings is that because these respondents are recipients of the Illinois Child Care Assistance Program and their child care is subsidized, they do not have a barrier when accessing affordable and quality child care. Subsidizing child care for low income working parents provides them with the choice of selecting a quality child care provider.

abstract: Social media sites focusing on health-related topics are rapidly gaining popularity among online health consumers, also known as "e-patients". The increasing adoption of social media by e-patients and their demand for reliable health information has prompted several health care organizations (HCOs) to establish their social media presence. HCOs are using social media to connect with current and potential e-patients, and improve patient education and overall quality of care. A significant benefit for HCOs in using social media could potentially be the improvement of their quality of care, as perceived by patients. Perceived quality of care is a key determinant of patients' experience and satisfaction with health care services, and has been a major focus of research. However, there is very little research on the relationship between patients' online social media experience and their perceived quality of care. The objective of this research was to evaluate e-patients' online experience with an HCO's social media sites and examine its impact on their perceived quality of care. Research methodology included a combination of qualitative and quantitative approaches. Data for this study was collected from Mayo Clinic's social media sites through an online survey. Descriptive statistics were used to identify basic demographic profiles of e-patients. Linear regression analysis was used to examine the relationship between online experience and perceived quality of care. Qualitative data was analyzed using thematic analysis. Results showed a positive relationship between online experience and perceived quality of care. Qualitative data provided information about e-patients' attitudes and expectations from healthcare social media. Overall, results yielded insights on design and management of social media sites for e-patients, and integration of these online applications in the health care delivery process. This study is of value to HCOs, health communicators and social media designers, and will also serve as a foundation for subsequent studies in the area of health care social media. / Dissertation/Thesis / M.S.D. Design 2011

L'asthme est un problème de Santé publique au niveau mondial. Il touche environ 10% des enfants et des adultes en France, avec des conséquences socio-économiques importantes. L'asthme est une maladie respiratoire chronique obstructive complexe, caractérisée par une hétérogénéité phénotypique et une expression clinique variable au cours du temps. Les essais contrôlés randomisés restent la référence pour évaluer l'efficacité et la sécurité des médicaments. Néanmoins, les études pharmaco-épidémiologiques, nécessaires pour compléter les résultats des essais contrôlés randomisés, restent encore limitées dans l'asthme. Cette thèse en pharmaco-épidémiologie, s'appuyant sur deux cohortes françaises complémentaires, avait pour objectif d’améliorer la compréhension de la qualité de la prise en charge thérapeutique de l'asthme en population. Les objectifs spécifiques étaient d'étudier: 1) les bénéfices à long terme des corticoïdes inhalés dans l'asthme, 2) le ratio « traitements de fond/traitements des pathologies respiratoires obstructives », défini à partir des données médico-administratives, et ses fluctuations au cours du temps chez les sujets âgés, et 3) la polymédication dans l'asthme du sujet âgé.L'efficacité à court terme des corticoïdes inhalés a largement été démontrée mais leurs bénéfices à long terme ont rarement été étudiés. Nous avons estimé les effets à long terme des corticoïdes inhalés sur 245 adultes asthmatiques participant à l'étude EGEA. L'application d'une méthode par score de propension pour prendre en compte le biais d'indication n’a pas permis de mettre en évidence un bénéfice à long terme des corticoïdes inhalés utilisés au long cours sur la santé respiratoire. Un bénéfice potentiel de l’exposition aux corticoïdes inhalés au long cours a toutefois été observé sur l’évolution de la fonction respiratoire. Plusieurs indicateurs de qualité de prise en charge de l’asthme, basés principalement sur des bases de données administratives américaines, ont été proposés dans l'enfance et à l'âge adulte. Cependant, la pertinence de tels indicateurs n'a pas été spécifiquement étudiée dans des populations plus âgées et leurs fluctuations au cours du temps n'ont jamais été caractérisées. Notre étude menée auprès de 4328 femmes asthmatiques âgées de l'étude Asthma-E3N a montré que le ratio « traitements de fond/traitements des pathologies respiratoires obstructives », défini à partir des bases de données médico-administratives, est un indicateur pertinent pour identifier les sujets âgés à risque de mauvais contrôle de la maladie. De plus, l’étude de la variation à long terme du ratio a permis d’identifier des groupes de femmes asthmatiques présentant un risque élevé d’asthme non contrôlé à terme. La population âgée souffre fréquemment de multimorbidité, conduisant à la polymédication et potentiellement à une réponse altérée au traitement. L’impact des comorbidités et de leurs traitements reste inconnu. Nous avons appliqué une méthode intégrative à partir des bases de données de remboursements des médicaments chez les femmes asthmatiques de l'étude Asthma-E3N. Le « Pharmacome » a confirmé la polymédication dans cette population et a mis en évidence les liens entre les médicaments. En appliquant une méthode de classification sur les classes thérapeutiques des médicaments utilisés, nous avons identifié trois profils de femmes asthmatiques présentant un niveau de risque différent de mauvais contrôle de la maladie.En conclusion, les données médico-administratives représentent une source pertinente pour identifier les patients à haut risque de mauvais pronostic d’asthme au niveau populationnel. Notre travail en pharmaco-épidémiologie apporte une nouvelle approche sur l’évaluation de la prise en charge thérapeutique de l’asthme et sur l’interrelation entre les médicaments de l’asthme et les autres médicaments, proxies de comorbidités. Nos résultats sont d’une importance particulière, en raison du fardeau mondial de l’asthme........ / : Asthma is a worldwide non-communicable disease affecting around 10% of children and adults in France, with substantial socio-economic impacts. This is a complex chronic respiratory disease characterized by phenotypic heterogeneity and fluctuations of clinical expression over time. Randomized controlled trials (RCT) remain the gold standard to assess medication efficacy and safety. Nevertheless, pharmacoepidemiological studies have a helpful design to complement RCT findings, but are still limited in asthma. This thesis in pharmacoepidemiology, relying on two complementary French cohorts, aimed to add information on the assessment of the quality of asthma therapeutic management in real life. Specific aims were to investigate: i) the long-term benefits of inhaled corticosteroids in asthma, ii) the controller-to-total asthma medication ratio and its fluctuations over time in the elderly, and iii) the polymedication in elderly asthma.The short-term efficacy of inhaled corticosteroids on asthma has been largely established, but their long-term benefits have rarely been assessed. We estimated the long-term effects of inhaled corticosteroids on 245 adults with persistent asthma who participated to the EGEA study. Applying a propensity score method to take into account the indication bias did not offer evidence of a statistical significant long-term benefit of ICS used regularly or continuously over twelve years on respiratory health. However, a trend for benefits of long-term ICS exposure was observed on lung function evolution. Asthma therapeutic management in the elderly relies on studies performed in younger populations, postulating that its efficacy is similar in this specific population. Some quality of care markers, mainly based on US drug administrative databases, have been proposed in childhood and adulthood with asthma. However, the relevance of such asthma medication ratios has been poorly addressed in older populations, and its fluctuations over time have never been characterized. Our study, conducted among 4,328 elderly women with ever asthma from the Asthma-E3N study and using drug administrative databases, showed that the controller-to-total asthma medication ratio is also relevant in the elderly and identified specific patterns of fluctuations of the ratio significantly associated with the subsequent risk for poor asthma-related outcomes. The elderly population frequently suffers from multimorbidity, leading to polymedication and potential altered response to treatment. To which extent asthma-related comorbidities and their treatments impact on asthma phenotypes and medications remains unknown. Therefore, we applied an integrative method on a drug administrative database to characterize the medication network in elderly women with asthma from the Asthma-E3N study. The medication network (“Pharmacome”) in elderly asthma confirmed the complexity of therapeutic management in this population and highlighted links between medications. Applying a clustering method on drug use among participants with asthma, we identified three clusters of individuals characterized by their profiles of treatment use, which showed different risk levels for subsequent poor asthma characteristics (uncontrolled asthma, asthma attacks/exacerbations, impaired health-related quality of life).In conclusion, our findings are both of public health and clinical interests. Claims data are relevant to identify patients at high risk for poor asthma prognosis at the population level. Our work in pharmacoepidemiology, relying on health administrative databases, provides new insights into the assessment of asthma therapeutic management and the inter-relationship between asthma medications and medications for comorbid conditions......

Introdução: Esta tese de doutorado é mais uma contribuição Grupo Brasileiro de Estudos em Qualidade de Vida (WHOQOL-Brasil) do Programa de Pós-Graduação em Ciências Médicas: Psiquiatria, UFRGS. O Grupo WHOQOL-Brasil tem trabalhado em projetos transculturais de elaboração de instrumentos de qualidade de vida (QV) sob a coordenação da Organização Mundial da Saúde (OMS). Dentre os instrumentos já desenvolvidos estão o WHOQOL-1000, o WHOQOL-Bref, o WHOQOL-HIV, o WHOQOL-SRPB, o WHOQOL-OLD e, com esta tese, o WHOQOL-Dis. O desenvolvimento de uma escala de QV para pessoas com deficiências é especialmente importante se levarmos em conta o crescimento desta porção da população e suas peculiaridades. Este estudo fez parte do projeto transcultural de metodologia simultânea da OMS chamado Qualidade do Cuidado e Qualidade de Vida para Pessoas com Incapacidades Intelectuais e Físicas: Viver Integrado, Inclusão Social e Participação como Usuários de Serviços (Projeto Disqol). Objetivos: O objetivo principal deste estudo foi desenvolver versões de instrumentos transculturais, válidos para o português brasileiro, para a mensuração da QV, da qualidade de cuidado e das atitudes frente a incapacidades para pessoas com incapacidades e investigar variáveis associadas a incapacidade com base em regressão linear múltipla. Os objetivos específicos foram: (1) apresentar evidências de validade da versão em português brasileiro do WHOQOL-Dis: instrumento de avaliação da QV da OMS para pessoas com incapacidades (artigo 1), (2) apresentar evidências de validade da versão em português brasileiro do Quality of Care Scale, instrumento de avaliação da qualidade de cuidado da OMS para pessoas com incapacidades (artigo 2), (3) apresentar evidências de validade da versão em português brasileiro do Attitudes towards Disability Scale, instrumento de avaliação das atitudes frente a incapacidades da OMS para pessoas com incapacidades (artigo 3) e (4) propor um modelo empírico exploratório para funcionalidade (artigo 4). Métodos: Foram recrutadas pessoas com incapacidades físicas e intelectuais com idade entre 18-65 anos, em hospitais, entidades de apoio e organizações não-governamentais. Para os estudos relatados nos artigos 1 a 3, as análises foram baseadas na psicometria clássica e realizadas de forma independente para pessoas com incapacidades físicas e incapacidades intelectuais. O projeto foi aprovado pelo Comitê de Ética do Hospital de Clínicas de Porto Alegre (processos no 06-016, 06-017 e 06-021). Resultados: Participaram do estudo 162 pessoas com incapacidades físicas (98 mulheres), distribuídas entre condições de saúde variadas. As deficiências mais comuns foram: deficiência visual (n= 25; 15,4%), deficiência auditiva (n=11; 6,8%), sequela de acidente vascular cerebral (n=4; 2,5%). Na amostra de pessoas com incapacidades intelectuais, participaram 156 pessoas (55 mulheres). A idade média ficou em 45,48 anos (DP=12,26) para pessoas com incapacidades físicas e de 30,53 anos (DP 9,42) para pessoas com incapacidades intelectuais. Evidências satisfatórias de validade e fidedignidade foram encontradas nos instrumentos desenvolvidos (Artigos 1, 2 e 3). Os alfas de Cronbach dos instrumentos foram: WHOQOL-Dis-D, 0,91; WHOQOL-Dis-ID, 0,86; QOCS-D, 0,87; QOCS-ID, 0,74; ADS-D, 0,76; e ADS-ID, 0,72. Os resultados do teste-reteste na amostra de pessoas com incapacidades intelectuais foram satisfatórios. Os resultados da análise fatorial sugerem bom ajuste com a manutenção do modelo fatorial proposto pela OMS. No Artigo 4 são apresentados dois modelos exploratórios para a funcionalidade, nos quais a visibilidade da incapacidade e aspectos físicos são elementos presentes para as duas amostras. Conclusões: Neste trabalho a percepção de pessoas com incapacidades físicas e intelectuais foi explorada para que se pudesse desenvolver instrumentos de medida sensíveis às reais necessidades dessas duas populações. O resultado é a publicação de seis instrumentos de medida de uso gratuito: (1) WHOQOL-Dis-D, instrumento de medida para a avaliação da qualidade de vida na perspectiva de pessoas com incapacidades físicas; (2) WHOQOL-Dis-ID, instrumento de medida para a avaliação da qualidade de vida na perspectiva de pessoas com incapacidades intelectuais; (3) Quality of Care Scale-D, instrumento de medida para a avaliação da qualidade de cuidado na perspectiva de pessoas com incapacidades físicas; (4) Quality of Care Scale-ID, instrumento de medida para a avaliação da qualidade de cuidado na perspectiva de pessoas com incapacidades intelectuais; (5) Attitudes Towards Disabilities Scale-D, instrumento de medida para a avaliação das atitudes frente a incapacidades na perspectiva de pessoas com incapacidades físicas; e (6) Attitudes Towards Disabilities Scale-ID, instrumento de medida para a avaliação das atitudes frente a incapacidades na perspectiva de pessoas com incapacidades intelectuais. Através dos modelos teóricos empíricos e exploratórios apresentados apontam-se variáveis que merecem atenção de pesquisas futuras. / Introduction: This thesis is a contribution of the Brazilian Branch of the Quality of Life Group (WHOQOL-Group) from the Medical Sciences Graduation Program: Psychiatry, UFRGS. The Brazilian WHOQOL-Group-has worked on transcultural projects for the development of instruments on quality of life (QOL) under the coordination of the World Health Organization (WHO). Among the instruments are already developed are WHOQOL-1000, WHOQOL-Bref, WHOQOL-HIV, WHOQOL-SRPB, WHOQOL-OLD and, with this thesis, WHOQOL-Dis. The development of an instrument to assess the QOL of people with disabilities is especially important if we take into account the growth of this portion of the population and its peculiarities. This study was part of cross-cultural and simultaneous methodology project by WHO called Quality of Care and Quality of Life for People with Intellectual Disabilities and Individuals: Integrated Living, Social Inclusion and Service Users Participation (Disqol Project). Objetives: The main objective of this study was to develop versions of cross-cultural instruments, valid for Brazilian Portuguese, for the measurement of QOL, quality of care (QC) and attitudes towards disabilities (ATT) for people with disabilities, and to present a theoretical model of disability based on multiple linear regression (MLR). Specific objectives were to: (1) present evidence of validity of the Brazilian Portuguese version of the WHOQOL-Dis: WHO’s QOL assessment instrument for people with disabilities (Article 1); (2) present evidence of validity of the Brazilian Portuguese version of QOCS: WHO’s instrument for assessing the quality of care for people with disabilities (Article 2); (3) provide evidence of validity of the Brazilian Portuguese version of ADS: WHO’s instrument for assessing attitudes towards disabilities for people with disabilities (Article 3); and (4) propose an empirical exploratory model por functioning (Article 4). Methods: People with physical and intellectual disabilities aged 18-65 years were recruited from hospitals, supporting organizations and non-governmental organizations. For the studies reported in Articles 1-3, analyzes were based on classical psychometrics and performed independently for the two samples. The project was approved by the Ethics Committee of the Hospital de Clínicas de Porto Alegre (processes numbers 06-016, 06-017, and 06-021). Results: The study included 162 people with disabilities (98 women), distributed among various health conditions, the most common being visual impairment (n=25; 15.4%), hearing loss (n=11; 6.8%) and stroke sequelae (n=4; 2.5%), and 156 people with intellectual disabilities (55 women). The age average was 45.48 years for people with disabilities (SD 12.26) and 30.53 for people with intellectual disabilities (SD 9,42). Satisfactory evidence of validity and reliability was found in the developed instruments (Articles 1, 2 and 3). Cronbach's alphas of the instruments were: WHOQOL-Dis-D, 0.91; WHOQOL-Dis-ID, 0.86; QOCS-D, 0.87; QOCS-ID, 0.74; ADS-D, 0, 76, and ADS-ID, 0.72. Test-retests results in samples with intellectual disabilities were satisfactory. Results from factorial analisis sugest a good adjustment with the maintenance of the factorial model proposed by WHO. Article 4 presents two models of functioning in which physical aspects and the visibility of disability appear as elements for both samples. Conclusions: In this study the perception of people with physical and intellectual disabilities was explored so to develop measurement instruments sensitive to the real needs of these two populations. The result is the publication of six use free measuring instruments: (1) WHOQOL-Dis-D, measuring instrument for the evaluation of quality of life from the perspective of people with physical disabilities, (2) WHOQOL-Dis-ID, measuring instrument for the assessment of quality of life from the perspective of people with intellectual disabilities, (3) Quality of Care Scale – D, measuring instrument for assessing quality of care from the perspective of people with physical disabilities, (4) Quality of Care Scale – ID, measuring instrument for assessing quality of care from the perspective of people with intellectual disabilities, (5) Attitudes towards Disabilities Scale – D, measuring instrument for assessing attitudes towards disability from the perspective of people with physical disabilities, and (6) Attitudes towards Disabilities Scale – ID, measuring instrument for assessing attitudes towards disability from the perspective of people with intellectual disabilities. Through the theoretical models and empirical exploration presented point to variables that deserve attention for future research.

The quality issue of provided health care is the topic which is constantly getting more attention. In this area there is always even probably will be always - something to improve. The patients´ safety in healthcare facilities is affected by the so-called culture of safety.The research was conducted in six medical institutions of the South Bohemian Region, though seven were originally planned. However, I was not given the data here, probably due to the long term incapacity of the respondent. The research was focused precisely on the area of care quality and patient safety. A mixed method research (qualitative and quantitative) was deliberately used in this task. The aim was to map the most common causes of adverse events and then, based on the causes, to propose possible arrangements to prevent the occurrence of the causes. For this purpose five research questions were established.The outcomes obtained were processed into tables, plus the graphical representation of some was accompanied. Then, in the "discussion" chapter, the results were compared and analyzed in more detail.

Healthcare risk management consists of continuous consideration of potential adverse situations and their prevention. In this sense, healthcare facilities consider any source of uncertainty to be a risk which must be eliminated or, at least, reduced. International studies show that up to 70% of adverse events could be prevented. Reasons for observing various types of adverse events may differ in individual healthcare facilities. However, most adverse events are observed in an effort to prevent their consequences upon patients' health.

The nursing profession belongs to helping professions which are heavily demanding in terms of mental and physical aspects. The nurses who are university graduates enter into practice more mentally and physically mature, and their approach to patients and the care provided may be better than in nurses with secondary education. In care provision nurses have to cooperate with physicians, but also with other healthcare professionals. Due to the lack of medical personnel nurses assume responsibilities of other team members, which they may perceive as a restriction in fulfilling their professional identity. This restriction may be reflected in the quality of the care provided. It often happens that a nurse cannot fulfill her professional identity because of the pressure of her family which requires the fulfillment of their own requirements prior to fulfilling the professional identity of a nurse.The aim of the thesis was to determine how nurses, but also their family members, perceive the professional identity of nurses. The aim was achieved. The research was carried out in two phases. The first phase was conducted using interviews with six nurses of different ages both with and without university education. The second phase was carried out through a quantitative survey using a questionnaire method in health care facilities in Písek, České Budějovice and Plzeň. Results of the research can be used in qualification and lifelong education of nurses to strengthen their identification with the profession.

Introdução: Esta tese de doutorado é mais uma contribuição Grupo Brasileiro de Estudos em Qualidade de Vida (WHOQOL-Brasil) do Programa de Pós-Graduação em Ciências Médicas: Psiquiatria, UFRGS. O Grupo WHOQOL-Brasil tem trabalhado em projetos transculturais de elaboração de instrumentos de qualidade de vida (QV) sob a coordenação da Organização Mundial da Saúde (OMS). Dentre os instrumentos já desenvolvidos estão o WHOQOL-1000, o WHOQOL-Bref, o WHOQOL-HIV, o WHOQOL-SRPB, o WHOQOL-OLD e, com esta tese, o WHOQOL-Dis. O desenvolvimento de uma escala de QV para pessoas com deficiências é especialmente importante se levarmos em conta o crescimento desta porção da população e suas peculiaridades. Este estudo fez parte do projeto transcultural de metodologia simultânea da OMS chamado Qualidade do Cuidado e Qualidade de Vida para Pessoas com Incapacidades Intelectuais e Físicas: Viver Integrado, Inclusão Social e Participação como Usuários de Serviços (Projeto Disqol). Objetivos: O objetivo principal deste estudo foi desenvolver versões de instrumentos transculturais, válidos para o português brasileiro, para a mensuração da QV, da qualidade de cuidado e das atitudes frente a incapacidades para pessoas com incapacidades e investigar variáveis associadas a incapacidade com base em regressão linear múltipla. Os objetivos específicos foram: (1) apresentar evidências de validade da versão em português brasileiro do WHOQOL-Dis: instrumento de avaliação da QV da OMS para pessoas com incapacidades (artigo 1), (2) apresentar evidências de validade da versão em português brasileiro do Quality of Care Scale, instrumento de avaliação da qualidade de cuidado da OMS para pessoas com incapacidades (artigo 2), (3) apresentar evidências de validade da versão em português brasileiro do Attitudes towards Disability Scale, instrumento de avaliação das atitudes frente a incapacidades da OMS para pessoas com incapacidades (artigo 3) e (4) propor um modelo empírico exploratório para funcionalidade (artigo 4). Métodos: Foram recrutadas pessoas com incapacidades físicas e intelectuais com idade entre 18-65 anos, em hospitais, entidades de apoio e organizações não-governamentais. Para os estudos relatados nos artigos 1 a 3, as análises foram baseadas na psicometria clássica e realizadas de forma independente para pessoas com incapacidades físicas e incapacidades intelectuais. O projeto foi aprovado pelo Comitê de Ética do Hospital de Clínicas de Porto Alegre (processos no 06-016, 06-017 e 06-021). Resultados: Participaram do estudo 162 pessoas com incapacidades físicas (98 mulheres), distribuídas entre condições de saúde variadas. As deficiências mais comuns foram: deficiência visual (n= 25; 15,4%), deficiência auditiva (n=11; 6,8%), sequela de acidente vascular cerebral (n=4; 2,5%). Na amostra de pessoas com incapacidades intelectuais, participaram 156 pessoas (55 mulheres). A idade média ficou em 45,48 anos (DP=12,26) para pessoas com incapacidades físicas e de 30,53 anos (DP 9,42) para pessoas com incapacidades intelectuais. Evidências satisfatórias de validade e fidedignidade foram encontradas nos instrumentos desenvolvidos (Artigos 1, 2 e 3). Os alfas de Cronbach dos instrumentos foram: WHOQOL-Dis-D, 0,91; WHOQOL-Dis-ID, 0,86; QOCS-D, 0,87; QOCS-ID, 0,74; ADS-D, 0,76; e ADS-ID, 0,72. Os resultados do teste-reteste na amostra de pessoas com incapacidades intelectuais foram satisfatórios. Os resultados da análise fatorial sugerem bom ajuste com a manutenção do modelo fatorial proposto pela OMS. No Artigo 4 são apresentados dois modelos exploratórios para a funcionalidade, nos quais a visibilidade da incapacidade e aspectos físicos são elementos presentes para as duas amostras. Conclusões: Neste trabalho a percepção de pessoas com incapacidades físicas e intelectuais foi explorada para que se pudesse desenvolver instrumentos de medida sensíveis às reais necessidades dessas duas populações. O resultado é a publicação de seis instrumentos de medida de uso gratuito: (1) WHOQOL-Dis-D, instrumento de medida para a avaliação da qualidade de vida na perspectiva de pessoas com incapacidades físicas; (2) WHOQOL-Dis-ID, instrumento de medida para a avaliação da qualidade de vida na perspectiva de pessoas com incapacidades intelectuais; (3) Quality of Care Scale-D, instrumento de medida para a avaliação da qualidade de cuidado na perspectiva de pessoas com incapacidades físicas; (4) Quality of Care Scale-ID, instrumento de medida para a avaliação da qualidade de cuidado na perspectiva de pessoas com incapacidades intelectuais; (5) Attitudes Towards Disabilities Scale-D, instrumento de medida para a avaliação das atitudes frente a incapacidades na perspectiva de pessoas com incapacidades físicas; e (6) Attitudes Towards Disabilities Scale-ID, instrumento de medida para a avaliação das atitudes frente a incapacidades na perspectiva de pessoas com incapacidades intelectuais. Através dos modelos teóricos empíricos e exploratórios apresentados apontam-se variáveis que merecem atenção de pesquisas futuras. / Introduction: This thesis is a contribution of the Brazilian Branch of the Quality of Life Group (WHOQOL-Group) from the Medical Sciences Graduation Program: Psychiatry, UFRGS. The Brazilian WHOQOL-Group-has worked on transcultural projects for the development of instruments on quality of life (QOL) under the coordination of the World Health Organization (WHO). Among the instruments are already developed are WHOQOL-1000, WHOQOL-Bref, WHOQOL-HIV, WHOQOL-SRPB, WHOQOL-OLD and, with this thesis, WHOQOL-Dis. The development of an instrument to assess the QOL of people with disabilities is especially important if we take into account the growth of this portion of the population and its peculiarities. This study was part of cross-cultural and simultaneous methodology project by WHO called Quality of Care and Quality of Life for People with Intellectual Disabilities and Individuals: Integrated Living, Social Inclusion and Service Users Participation (Disqol Project). Objetives: The main objective of this study was to develop versions of cross-cultural instruments, valid for Brazilian Portuguese, for the measurement of QOL, quality of care (QC) and attitudes towards disabilities (ATT) for people with disabilities, and to present a theoretical model of disability based on multiple linear regression (MLR). Specific objectives were to: (1) present evidence of validity of the Brazilian Portuguese version of the WHOQOL-Dis: WHO’s QOL assessment instrument for people with disabilities (Article 1); (2) present evidence of validity of the Brazilian Portuguese version of QOCS: WHO’s instrument for assessing the quality of care for people with disabilities (Article 2); (3) provide evidence of validity of the Brazilian Portuguese version of ADS: WHO’s instrument for assessing attitudes towards disabilities for people with disabilities (Article 3); and (4) propose an empirical exploratory model por functioning (Article 4). Methods: People with physical and intellectual disabilities aged 18-65 years were recruited from hospitals, supporting organizations and non-governmental organizations. For the studies reported in Articles 1-3, analyzes were based on classical psychometrics and performed independently for the two samples. The project was approved by the Ethics Committee of the Hospital de Clínicas de Porto Alegre (processes numbers 06-016, 06-017, and 06-021). Results: The study included 162 people with disabilities (98 women), distributed among various health conditions, the most common being visual impairment (n=25; 15.4%), hearing loss (n=11; 6.8%) and stroke sequelae (n=4; 2.5%), and 156 people with intellectual disabilities (55 women). The age average was 45.48 years for people with disabilities (SD 12.26) and 30.53 for people with intellectual disabilities (SD 9,42). Satisfactory evidence of validity and reliability was found in the developed instruments (Articles 1, 2 and 3). Cronbach's alphas of the instruments were: WHOQOL-Dis-D, 0.91; WHOQOL-Dis-ID, 0.86; QOCS-D, 0.87; QOCS-ID, 0.74; ADS-D, 0, 76, and ADS-ID, 0.72. Test-retests results in samples with intellectual disabilities were satisfactory. Results from factorial analisis sugest a good adjustment with the maintenance of the factorial model proposed by WHO. Article 4 presents two models of functioning in which physical aspects and the visibility of disability appear as elements for both samples. Conclusions: In this study the perception of people with physical and intellectual disabilities was explored so to develop measurement instruments sensitive to the real needs of these two populations. The result is the publication of six use free measuring instruments: (1) WHOQOL-Dis-D, measuring instrument for the evaluation of quality of life from the perspective of people with physical disabilities, (2) WHOQOL-Dis-ID, measuring instrument for the assessment of quality of life from the perspective of people with intellectual disabilities, (3) Quality of Care Scale – D, measuring instrument for assessing quality of care from the perspective of people with physical disabilities, (4) Quality of Care Scale – ID, measuring instrument for assessing quality of care from the perspective of people with intellectual disabilities, (5) Attitudes towards Disabilities Scale – D, measuring instrument for assessing attitudes towards disability from the perspective of people with physical disabilities, and (6) Attitudes towards Disabilities Scale – ID, measuring instrument for assessing attitudes towards disability from the perspective of people with intellectual disabilities. Through the theoretical models and empirical exploration presented point to variables that deserve attention for future research.

Introdução: Esta tese de doutorado é mais uma contribuição Grupo Brasileiro de Estudos em Qualidade de Vida (WHOQOL-Brasil) do Programa de Pós-Graduação em Ciências Médicas: Psiquiatria, UFRGS. O Grupo WHOQOL-Brasil tem trabalhado em projetos transculturais de elaboração de instrumentos de qualidade de vida (QV) sob a coordenação da Organização Mundial da Saúde (OMS). Dentre os instrumentos já desenvolvidos estão o WHOQOL-1000, o WHOQOL-Bref, o WHOQOL-HIV, o WHOQOL-SRPB, o WHOQOL-OLD e, com esta tese, o WHOQOL-Dis. O desenvolvimento de uma escala de QV para pessoas com deficiências é especialmente importante se levarmos em conta o crescimento desta porção da população e suas peculiaridades. Este estudo fez parte do projeto transcultural de metodologia simultânea da OMS chamado Qualidade do Cuidado e Qualidade de Vida para Pessoas com Incapacidades Intelectuais e Físicas: Viver Integrado, Inclusão Social e Participação como Usuários de Serviços (Projeto Disqol). Objetivos: O objetivo principal deste estudo foi desenvolver versões de instrumentos transculturais, válidos para o português brasileiro, para a mensuração da QV, da qualidade de cuidado e das atitudes frente a incapacidades para pessoas com incapacidades e investigar variáveis associadas a incapacidade com base em regressão linear múltipla. Os objetivos específicos foram: (1) apresentar evidências de validade da versão em português brasileiro do WHOQOL-Dis: instrumento de avaliação da QV da OMS para pessoas com incapacidades (artigo 1), (2) apresentar evidências de validade da versão em português brasileiro do Quality of Care Scale, instrumento de avaliação da qualidade de cuidado da OMS para pessoas com incapacidades (artigo 2), (3) apresentar evidências de validade da versão em português brasileiro do Attitudes towards Disability Scale, instrumento de avaliação das atitudes frente a incapacidades da OMS para pessoas com incapacidades (artigo 3) e (4) propor um modelo empírico exploratório para funcionalidade (artigo 4). Métodos: Foram recrutadas pessoas com incapacidades físicas e intelectuais com idade entre 18-65 anos, em hospitais, entidades de apoio e organizações não-governamentais. Para os estudos relatados nos artigos 1 a 3, as análises foram baseadas na psicometria clássica e realizadas de forma independente para pessoas com incapacidades físicas e incapacidades intelectuais. O projeto foi aprovado pelo Comitê de Ética do Hospital de Clínicas de Porto Alegre (processos no 06-016, 06-017 e 06-021). Resultados: Participaram do estudo 162 pessoas com incapacidades físicas (98 mulheres), distribuídas entre condições de saúde variadas. As deficiências mais comuns foram: deficiência visual (n= 25; 15,4%), deficiência auditiva (n=11; 6,8%), sequela de acidente vascular cerebral (n=4; 2,5%). Na amostra de pessoas com incapacidades intelectuais, participaram 156 pessoas (55 mulheres). A idade média ficou em 45,48 anos (DP=12,26) para pessoas com incapacidades físicas e de 30,53 anos (DP 9,42) para pessoas com incapacidades intelectuais. Evidências satisfatórias de validade e fidedignidade foram encontradas nos instrumentos desenvolvidos (Artigos 1, 2 e 3). Os alfas de Cronbach dos instrumentos foram: WHOQOL-Dis-D, 0,91; WHOQOL-Dis-ID, 0,86; QOCS-D, 0,87; QOCS-ID, 0,74; ADS-D, 0,76; e ADS-ID, 0,72. Os resultados do teste-reteste na amostra de pessoas com incapacidades intelectuais foram satisfatórios. Os resultados da análise fatorial sugerem bom ajuste com a manutenção do modelo fatorial proposto pela OMS. No Artigo 4 são apresentados dois modelos exploratórios para a funcionalidade, nos quais a visibilidade da incapacidade e aspectos físicos são elementos presentes para as duas amostras. Conclusões: Neste trabalho a percepção de pessoas com incapacidades físicas e intelectuais foi explorada para que se pudesse desenvolver instrumentos de medida sensíveis às reais necessidades dessas duas populações. O resultado é a publicação de seis instrumentos de medida de uso gratuito: (1) WHOQOL-Dis-D, instrumento de medida para a avaliação da qualidade de vida na perspectiva de pessoas com incapacidades físicas; (2) WHOQOL-Dis-ID, instrumento de medida para a avaliação da qualidade de vida na perspectiva de pessoas com incapacidades intelectuais; (3) Quality of Care Scale-D, instrumento de medida para a avaliação da qualidade de cuidado na perspectiva de pessoas com incapacidades físicas; (4) Quality of Care Scale-ID, instrumento de medida para a avaliação da qualidade de cuidado na perspectiva de pessoas com incapacidades intelectuais; (5) Attitudes Towards Disabilities Scale-D, instrumento de medida para a avaliação das atitudes frente a incapacidades na perspectiva de pessoas com incapacidades físicas; e (6) Attitudes Towards Disabilities Scale-ID, instrumento de medida para a avaliação das atitudes frente a incapacidades na perspectiva de pessoas com incapacidades intelectuais. Através dos modelos teóricos empíricos e exploratórios apresentados apontam-se variáveis que merecem atenção de pesquisas futuras. / Introduction: This thesis is a contribution of the Brazilian Branch of the Quality of Life Group (WHOQOL-Group) from the Medical Sciences Graduation Program: Psychiatry, UFRGS. The Brazilian WHOQOL-Group-has worked on transcultural projects for the development of instruments on quality of life (QOL) under the coordination of the World Health Organization (WHO). Among the instruments are already developed are WHOQOL-1000, WHOQOL-Bref, WHOQOL-HIV, WHOQOL-SRPB, WHOQOL-OLD and, with this thesis, WHOQOL-Dis. The development of an instrument to assess the QOL of people with disabilities is especially important if we take into account the growth of this portion of the population and its peculiarities. This study was part of cross-cultural and simultaneous methodology project by WHO called Quality of Care and Quality of Life for People with Intellectual Disabilities and Individuals: Integrated Living, Social Inclusion and Service Users Participation (Disqol Project). Objetives: The main objective of this study was to develop versions of cross-cultural instruments, valid for Brazilian Portuguese, for the measurement of QOL, quality of care (QC) and attitudes towards disabilities (ATT) for people with disabilities, and to present a theoretical model of disability based on multiple linear regression (MLR). Specific objectives were to: (1) present evidence of validity of the Brazilian Portuguese version of the WHOQOL-Dis: WHO’s QOL assessment instrument for people with disabilities (Article 1); (2) present evidence of validity of the Brazilian Portuguese version of QOCS: WHO’s instrument for assessing the quality of care for people with disabilities (Article 2); (3) provide evidence of validity of the Brazilian Portuguese version of ADS: WHO’s instrument for assessing attitudes towards disabilities for people with disabilities (Article 3); and (4) propose an empirical exploratory model por functioning (Article 4). Methods: People with physical and intellectual disabilities aged 18-65 years were recruited from hospitals, supporting organizations and non-governmental organizations. For the studies reported in Articles 1-3, analyzes were based on classical psychometrics and performed independently for the two samples. The project was approved by the Ethics Committee of the Hospital de Clínicas de Porto Alegre (processes numbers 06-016, 06-017, and 06-021). Results: The study included 162 people with disabilities (98 women), distributed among various health conditions, the most common being visual impairment (n=25; 15.4%), hearing loss (n=11; 6.8%) and stroke sequelae (n=4; 2.5%), and 156 people with intellectual disabilities (55 women). The age average was 45.48 years for people with disabilities (SD 12.26) and 30.53 for people with intellectual disabilities (SD 9,42). Satisfactory evidence of validity and reliability was found in the developed instruments (Articles 1, 2 and 3). Cronbach's alphas of the instruments were: WHOQOL-Dis-D, 0.91; WHOQOL-Dis-ID, 0.86; QOCS-D, 0.87; QOCS-ID, 0.74; ADS-D, 0, 76, and ADS-ID, 0.72. Test-retests results in samples with intellectual disabilities were satisfactory. Results from factorial analisis sugest a good adjustment with the maintenance of the factorial model proposed by WHO. Article 4 presents two models of functioning in which physical aspects and the visibility of disability appear as elements for both samples. Conclusions: In this study the perception of people with physical and intellectual disabilities was explored so to develop measurement instruments sensitive to the real needs of these two populations. The result is the publication of six use free measuring instruments: (1) WHOQOL-Dis-D, measuring instrument for the evaluation of quality of life from the perspective of people with physical disabilities, (2) WHOQOL-Dis-ID, measuring instrument for the assessment of quality of life from the perspective of people with intellectual disabilities, (3) Quality of Care Scale – D, measuring instrument for assessing quality of care from the perspective of people with physical disabilities, (4) Quality of Care Scale – ID, measuring instrument for assessing quality of care from the perspective of people with intellectual disabilities, (5) Attitudes towards Disabilities Scale – D, measuring instrument for assessing attitudes towards disability from the perspective of people with physical disabilities, and (6) Attitudes towards Disabilities Scale – ID, measuring instrument for assessing attitudes towards disability from the perspective of people with intellectual disabilities. Through the theoretical models and empirical exploration presented point to variables that deserve attention for future research.

Introdução: A segurança do paciente tem sido discutida amplamente no âmbito da assistência e da gerência de serviços de saúde, frente a sua magnitude no cenário nacional e internacional. Nesse sentido, o incremento da temática segurança do paciente no ensino e na pesquisa vem sendo também debatido e disseminado, a fim de gerar uma força de trabalho consciente e capaz de atender as demandas das instituições de saúde. Objetivo: Compreender a percepção do corpo docente e discente acerca dessa temática nos cursos de graduação em Enfermagem, Nutrição, Biomedicina, Farmácia, Fisioterapia e Psicologia de uma Instituição de Ensino Superior (IES) privada do interior do Estado de São Paulo. Percurso metodológico: Trata-se de um estudo qualitativo, exploratório, descritivo na modalidade estudo de caso, cujo cenário foi o Centro Universitário Nossa Senhora do Patrocínio. Os participantes foram seis docentes e seis discentes dos cursos supracitados da referida IES. Os dados foram coletados após a anuência do Comitê de Ética, por meio de entrevista semiestruturada, no período de agosto a dezembro de 2015. Os achados foram apresentados na forma de narrativa e analisados segundo Minayo, e à luz do referencial teórico da integralidade em saúde proposto por Ceccim. Resultados: Das narrativas dos participantes emergiram quatro categorias, a saber: visão da temática segurança do paciente nos conteúdos programáticos de cursos de graduação em saúde; valorização da interdisciplinaridade; interface entre a visão holística e a segurança do paciente; lacuna da temática segurança do paciente nos conteúdos programáticos. Desse modo, constatamos que a percepção da temática segurança do paciente esteve associada à importância da interdisciplinaridade e à necessidade do ensino dessa temática de forma articulada. Considerações finais: O estudo permitiu conhecer a percepção de docentes e discentes a respeito da temática segurança do paciente, destacando-se a necessidade de fomentar a inclusão dessa temática nas matrizes curriculares. Por conseguinte, acreditamos que cabe às IES a implantação e a implementação de estratégias de ensino concernentes à segurança do paciente, com a finalidade de verticalizar o conhecimento entre os futuros profissionais da área da saúde e, consequentemente, contribuir para a efetiva incorporação da cultura de segurança nos estabelecimentos de atenção à saúde. / Introduction: Patient Safety has been widely discussed in the context of managing and assistance in health services, due to its magnitude in national and international scenario. Considering this, the debate around the theme \"patient safety\" has raised in order to create and improve a workforce that should be conscious and able to meet the need of Health Institutions. Objective: Understanding teachers and students perceptions about patient safety, in undergraduate courses, specifically in Nursing, Nutrition, Biomedicine, Pharmacy, Physiotherapy and Psychology, from a private college in São Paulo State heartland. Methodology: Qualitative, exploratory and descriptive study, based on case study, that took place at Centro Universitário Nossa Senhora do Patrocínio. The participants were six teachers and six students from the graduation courses mentioned before. All the data were collected after Ethics Committee approval, through semi-structured interviews, from August to December 2015. The findings of this study were presented into the narrative form and analyzed according to Minayo\'s studies, assisted by the Health Integrality theoretical scheme proposed by Ceccim. Results: Four categories emerged from participants\' narratives: perspective about the theme \"patient safety\" in Global Health Courses\' curricula; interdisciplinarity appreciation; interface between holistic perspective and patient safety; the lack of the theme \"patient safety\" in courses\' curricula. Therefore, we could observe that this theme has always been connected to the importance of interdisciplinarity and to the need of teaching and discussing it in an articulated manner. Final comments: This study showed teachers and students perceptions about the theme \"patient safety\", emphasizing the need to stimulate discussions and the inclusion of this theme in courses curricula. Consequently, we believe it is colleges responsibility to include and initiate teaching and researching strategies about it, in order to spread this knowledge to future Global Health professionals and, as a result, contribute to the internalization of patient safety culture in health care places.