Despite the success illness novels have acquired in the last decade, the misrepresentation of chronic illness in the Young Adult genre is still going unnoticed. In an ableist society that still needs to be educated about invisible disabilities, most of the contemporary YA writers insist on finding miraculous solutions and questionable happy endings to their stories. The aim of this thesis is therefore to study the different ways in which YA writers fetishize and understate invisible disability and to find a way to subvert it. By focusing on the miracle cure trope and romanticization in the case of Nicola Yoon’s Everything Everything, it attempts to highlight the characteristics of low-quality disability fiction and demonstrate why and how the use of disability biases can affect negatively both disabled and nondisabled young readers. In addition, through the scrutiny of the author’s first YA novel, Nothing Wrong with Snails, it then illustrates how the in-depth analysis of past disability literature improved the author’s personal craft and enabled them to portray chronic illness and invisible disability avoiding stereotypes, biases, and tropes. In conclusion, it argues that writers ought to rely on disability studies in order to reach higher standards in the representation of invisible disability in YA fiction.

Em consequência da complexidade e extensão da problemática do viver com uma doença crônica, é importante investigar o impacto da doença e da adesão ao tratamento sobre a qualidade de vida (QV), especialmente no período da adolescência. Assim, esta dissertação teve como objetivo investigar as relações entre adesão ao tratamento e qualidade de vida em adolescentes com Diabetes Mellitus Tipo 1 (DM1), e foi organizada em dois estudos empíricos. O primeiro estudo investiga os preditores da QV, enquanto o segundo estudo enfoca a adesão ao tratamento, verificando variáveis associadas. Participaram da pesquisa 122 adolescentes com diagnóstico de DM1, com idades entre 12 e 18 anos (M=14,71; ±1,77), sendo 56,6% do sexo masculino. Foram utilizados os seguintes instrumentos: ficha de dados sociodemográficos, CEAT-VIH adaptado para tratamento com insulina, Questionário de Atividades de Autocuidado com o Diabetes, Escala de Depressão, Ansiedade e Estresse (EDAE-A-21), além da consulta de prontuários para obter os valores da hemoglobina glicada (HbA1c). Foram observadas correlações significativas entre QV, autocuidado, adesão, sintomas de depressão, ansiedade e estresse, o número de internações e a média dos últimos dois valores mensurados de HbA1c. Além disso, quanto mais adesão ao tratamento prescrito e quanto maior o autocuidado relacionado às práticas de mudança de hábitos, como o cuidado com a alimentação e atividade física regular, melhor a QV dos adolescentes. Destaca-se a importância de compreender os fatores relacionados à adesão ao tratamento, especialmente na adolescência, e sua influência sobre a QV, a fim de minimizar os impactos negativos da doença na vida dos jovens, promover maior qualidade de vida e buscar melhorias no atendimento a populações com DM1. / Due to the complexity and problems of extension of living with a chronic illness, it is important to investigate the impact of disease and treatment adherence on the quality of life (QOL), especially during adolescence. Thus, this work aimed to investigate the relationship between treatment adherence and quality of life in adolescents with type 1 diabetes mellitus (T1DM), and it was organized in two empirical studies. The first study investigated the predictors of QOL, while the second study focused on treatment adherence, looking for associated variables. The study included 122 adolescents diagnosed with type 1 diabetes aged between 12 and 18 years (M= 14.71; ±1.77), and 56.6% were male. The instruments were used: sociodemographic data chart, CEAT -VIH adapted to insulin treatment, Self-Care Activities Questionnaire with Diabetes, Depression Scale, Anxiety and Stress (EDAE-A), and the records of query to get the values of glycated hemoglobin (HbA1c). There were significant correlations between quality of life, self-care, adherence, symptoms of depression, anxiety and stress, the number of hospitalizations and the average of the last two measured values of HbA1c. In addition, the more adherence to prescribed treatment and the higher the related self-care habits to change practices, such as attention to diet and regular physical activity, the better the adolescents’ quality of life . The study highlights the importance of understanding the factors related to adherence to treatment, especially in adolescence, and their impact on quality of life in order to minimize the negative impacts of the disease in the young people’ lives, thus promoting better quality of life and qualifying the assistance to T1DM population.

Submitted by Rosane Santos (gueudeville@gmail.com) on 2015-01-22T00:43:39Z No. of bitstreams: 1 Dissertação_Rosane Gueudeville.pdf: 6281892 bytes, checksum: b3584ed8205b4c918c6e68a74b17b869 (MD5) / Approved for entry into archive by Maria Auxiliadora da Silva Lopes (silopes@ufba.br) on 2015-01-27T14:16:10Z (GMT) No. of bitstreams: 1 Dissertação_Rosane Gueudeville.pdf: 6281892 bytes, checksum: b3584ed8205b4c918c6e68a74b17b869 (MD5) / Made available in DSpace on 2015-01-27T14:16:10Z (GMT). No. of bitstreams: 1 Dissertação_Rosane Gueudeville.pdf: 6281892 bytes, checksum: b3584ed8205b4c918c6e68a74b17b869 (MD5) / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / A percepção da doença supõe um olhar qualitativo e os objetivos estabelecidos devem a longo ou em curto prazo ter em vista o restabelecimento do paciente e o seu retorno à sociedade, de modo a poder desempenhar as atividades que antes faziam parte da sua rotina. É neste contexto que vêm emergindo as Classes Hospitalares. Tal modalidade de atendimento anseia por minorar o sofrimento emocional e social, decorrente das hospitalizações, e assegurar a continuidade da escolarização de crianças e/ou adolescentes hospitalizados. Assim sendo, indivíduos cronicamente enfermos necessitam, em alguma medida, de uma atenção específica, seja pela necessidade de uso de aparatos médicos que visem minimizar os sintomas decorrentes da patologia, seja pela oferta de atendimento pedagógico durante o tratamento e/ou hospitalização. Desse modo, a presente pesquisa teve como objetivo analisar o papel da Classe Hospitalar na atenção terapêutica de alunos-pacientes com mucopolissacaridose (MPS). Tratou-se de um estudo qualitativo que utilizou o estudo de caso, como estratégia de pesquisa, para a melhor compreensão do fenômeno. Participaram da investigação 14 (quatorze) sujeitos, sendo 4 (quatro) alunos-pacientes com MPS, 5 (cinco) acompanhantes e 5 (cinco) profissionais de saúde. Como instrumento de coleta de dados, elegemos como procedimento o roteiro de entrevista semi-estruturada e individual. As entrevistas foram transcritas em sua integridade e submetidas a uma análise do conteúdo, após a exaustiva leitura das entrevistas definimos duas categorias temáticas: a doença crônica mediando à vida e uma escola dentro do hospital. Os resultados apontaram que os participantes percebem que a prática pedagógica das professoras da Classe Hospitalar ajuda manutenção dos vínculos escolares, na adesão ao tratamento, minimiza o estresse decorrente da Terapia de Reposição Enzimática, favorece à auto-estima, superação das limitações físicas, diminui a estigmatização da doença ajudando na socialização e inclusão escolar e social. / ABSTRACT Illness perception requires a qualitative view, and the established goals, in a short or a long term, must not lose sight of the patients’ reinstatement and their return to the society, in a way to perform activities which once were part of their routine. This is the context in which the Hospital Classes are emerging from. This modality of service aims to lessen social and emotional suffering, resulting from hospitalization, and ensure that the education of hospitalized children and/or teenagers will have place to continue. Therefore, individuals in chronic conditions need specific attention, which means either the use of medical equipment working to decrease resulting symptoms from a disease, or the offering of pedagogic assistance during the treatment and/or hospitalization. Thus, the present study aimed to analyze the role of Hospital Classes in therapeutic care of student-patients with mucopolysaccharidosis (MPS). It was a qualitative research that made use of the case study as a research strategy in order to better understand the phenomenon. Fourteen (14) people participated in the process; four (4) MPS student-patients, five (5) carers and five (5) health professionals. As an instrument of data collection, the semi-structured and individual interview script was chosen for the procedure. An unabridged transcription was made from the interviews, which were later subjected to a content analysis. After a thorough reading of the interviews we nailed down two categories of themes: the chronic illness condition interfering in life, and a school within the hospital. The results indicated that the participants are able to perceive that the pedagogic method of a Hospital Class teacher upkeeps bonds with the school, as well as helps with the treatment acceptance, lessen the stress resulting from the Enzyme replacement therapy, fosters self-esteem and recovery from physical limitations, and also decreases prejudice and lack of information concerning the illness, helping in social and school re-integration.

Submitted by Maike Costa (maiksebas@gmail.com) on 2017-07-06T12:50:18Z No. of bitstreams: 1 arquivototal.pdf: 2484992 bytes, checksum: ad34e0deb697608c62347d742972adb0 (MD5) / Made available in DSpace on 2017-07-06T12:50:18Z (GMT). No. of bitstreams: 1 arquivototal.pdf: 2484992 bytes, checksum: ad34e0deb697608c62347d742972adb0 (MD5) Previous issue date: 2017-03-22 / This thesis had as general objective to apprehend the social representations about diabetes and treatment developed by diabetics and to quantify the levels of Subjective Well-being (SWB) and resilience in this group of belonging. To achieve this, it was necessary to develop four studies, presented in the form of articles, three of them based on the Theory of Social Representations and one supported in the SWB and resilience constructs. The article 1 aimed to carry out a systematic review of the diabetes subsidized in the theory of Social Representations. Thus, a bibliographic survey was carried out by means of articles published in the databases GALE, SCIELO, MEDLINE and SCOPUS, between the years 2006 and 2016, using the combinations of descriptors "diabetes and social representations", "diabetes and representações sociais", and "diabetes and representaciones sociales". It was selected 9 articles, the results pointed to four main axes: (i) "Nutritional aspects"; (ii) "Diabetes and their settings"; (iii) "Support of the family members and the health professional" and (iv) "Consequences of diabetes". In short, the common-sense thinking conveyed in the revised articles was consensual about dietary difficulties. Despite the overvaluation of the need for food reeducation, there is a difficulty to its adherence due mainly to the emotional character. Regarding the support of the family and the health professional, it was observed that the overprotection by the first and that the lack of credibility in the medical team can interfere directly in the commitment of adherence to the treatment. The article 2 aimed to apprehend the social representations elaborated by people who have diabetes about the disease. As many as 31 people, with ages ranging from 34 and 76 years old (M = 55.68; SD = 11.6), who responded to a sociodemographic questionnaire and depth interview. The data were submitted to the Alceste software and analyzed using descriptive statistics and lexical analysis. The participants pointed out in their social representations were focused on the ignorance of diabetes, highlighting the surprise of the diagnosis, their representations were also anchored in nutritional and emotional factors which were permeated by negative emotions. Participants who used insulin have ratified responsibilities notions for the consequences of this disease, such as the case of the limbs amputation, those who did not used insulin described the disease linked to the triad of treatment (medication, dietary reeducation and physical activity). The article 3 aimed to analyze the social representations about diabetes mellitus and treatment elaborated by diabetics. The sample was composed of 104 participants with ages between 19 and 79 years (M = 56.16; SD = 13.01), who answered a sociodemographic questionnaire and the Free Word Association Test. The data were submitted to SPSS - 23.0 and Tri-deux-Mots software´s and analyzed using descriptive statistics and factorial correspondence analysis. The results showed that the consensus knowledge about diabetes does not differ from the scholarly knowledge. Regarding conception and treatment, diabetes was represented as a chronic disease related to blood sugar problems, mood swings and danger of life, like scientific knowledge. Treatment emerged in a manner associated to food control, adherence and maintenance of medical guidelines. It was possible to perceive consensual and discourse representations. The first ones concern the control that treatment requires. In the disbursals women focused on the disease associated with food restriction and mood swings and men associated diabetes with blood problems, life-threatening risks that may lead to death, and that they must obey the rules of treatment. The article 4 aimed to analyze the SWB and resilience in people with diabetes mellitus, it was applied the scales of SWB and resilience to 104 diabetic patients with a mean age of 56.16 years (SD = 13.01). The results showed that 65.4% of the participants presented high levels of SWB, with a higher mean for positive affects 3.65 (SD = 0.65); it was observed that most participants had high resilience (87.5%). It was found that the positive affect dimension of the BES scale correlated with the dimensions, actions and values (r = 0.58) and self-confidence (r = 0.23) of the resilience scale.The increase in the experience of positive emotions among the diabetics provided greater acceptance of themselves regarding the disease and its therapeutics. It is hoped that such studies will contribute to the construction of scientific knowledge from the perspective of the diabetic person, as well as to provide greater visibility to the disease regarding the elaboration of therapeutic practices focused on both their physical and emotional aspects. / Esta tese teve como objetivo geral apreender as representações sociais acerca do diabetes e tratamento elaboradas por pessoas diabéticas e quantificar os níveis do Bem-Estar Subjetivo (BES) e da resiliência nesse grupo de pertença. Para alcançá-lo, foi necessário desenvolver quatro estudos, apresentados em formato de artigos, três deles fundamentados na Teoria das Representações Sociais (TRS) e um respaldado nos construtos do BES e da resiliência. O artigo 1 objetivou realizar uma revisão sistemática acerca do diabetes com base no aporte teórico das Representações Sociais. Assim, realizou-se um levantamento bibliográfico através da busca de artigos publicados nas bases de dados GALE, SCIELO, MEDLINE e SCOPUS, entre os anos de 2006 e 2016, utilizando-se as combinações de descritores “diabetes and social representations”, “diabetes and representações sociais”, e “diabetes and representaciones sociales”. Foram selecionados 9 artigos, os resultados apontaram para quatro grandes eixos: (i) “Aspectos nutricionais”; (ii) “O diabetes e suas definições”; (iii) “Apoio do familiar e do profissional da saúde” e as (iv) “Consequências do diabetes”. Em suma, o pensamento do senso comum veiculado nos artigos revisados foi consensual no que diz respeito às dificuldades da dieta. Não obstante a supervalorização da necessidade da reeducação alimentar, existe uma dificuldade à sua aderência devido principalmente ao caráter emocional. Quanto ao apoio da família e do profissional da saúde, observou-se que a superproteção por parte da primeira e que a falta de credibilidade na equipe médica podem interferir diretamente no engajamento da adesão ao tratamento. O artigo 2 objetivou apreender as representações sociais sobre o diabetes elaboradas por pessoas que tem a doença. Participaram 31 pessoas com idades entre 34 e 76 anos (M= 55,68; DP= 11,6), que responderam a um questionário biossociodemográfico e à Entrevista em Profundidade. Os dados foram processados pelo software Alceste e analisados por meio da estatística descritiva e da análise lexical. Os participantes apontaram em suas representações sociais a falta de conhecimentos acerca do diabetes, destacando a surpresa do diagnóstico; suas representações também estiveram ancoradas em fatores nutricionais e emocionais os quais foram permeados por emoções de cunho negativo. Os participantes que utilizavam insulina ratificaram noções de responsabilidades voltadas para consequências da doença, como é o caso da amputação de membros e o grupo que não a utilizava descreveu a doença atrelada à tríade do tratamento (medicação, reeducação alimentar e atividade física). O artigo 3 objetivou analisar as representações sociais sobre o diabetes mellitus e seu tratamento elaboradas por pessoas diabéticas. A amostra foi constituída por 104 participantes com idades entre 19 e 79 anos (M= 56,16; DP= 13,01), que responderam a um questionário biossociodemográfico e à Técnica de Associação Livre de Palavras. Os dados foram computados pelos softwares SPSS - 23.0 e Tri-deux-Mots e analisados por meio da estatística descritiva e análise fatorial de correspondência. Os resultados apontaram que o conhecimento consensual acerca do diabetes não difere do saber erudito. No que tange à concepção e ao tratamento, o diabetes foi representado enquanto doença crônica relacionada a problemas de açúcar no sangue, oscilação de humor e perigo de vida, à semelhança do conhecimento científico. O tratamento emergiu de forma associada ao controle alimentar, adesão e manutenção das orientações médicas. Foi possível perceber representações consensuais e discensuais. As primeiras, dizem respeito ao controle que o tratamento exige. Nas discensuais, as mulheres focaram a doença associada à restrição alimentar e à oscilação de humor e os homens associaram o diabetes a problemas no sangue, perigo de vida que pode levar à morte e que devem obedecer às regras do tratamento. No artigo 4 objetivou-se analisar o BES e a resiliência em pessoas com diabetes mellitus, foram aplicadas as escalas de BES e de resiliência a 104 diabéticos com idade média de 56,16 anos (DP= 13,01). Os resultados evidenciaram que 65,4% dos participantes apresentaram altos níveis de BES, com maior média para os afetos positivos 3,65 (DP = 0,65); quanto à resiliência, observou-se que a maioria dos participantes possui alta capacidade de resiliência (87,5%). Constatou-se que a dimensão afeto positivo da escala BES correlacionou-se com as dimensões, ações e valores (r= 0,58) e autoconfiança (r= 0,23) da escala da resiliência. O aumento da vivência de emoções positivas entre os diabéticos propiciou maior aceitação de si no tocante à doença e sua terapêutica. Espera-se que tais estudos contribuam para a construção do conhecimento científico partindo da perspectiva da pessoa diabética, assim como proporcione maior visibilidade à doença no que tange à elaboração de práticas terapêuticas voltadas tanto para seus aspectos físicos, quanto emocionais.

Em consequência da complexidade e extensão da problemática do viver com uma doença crônica, é importante investigar o impacto da doença e da adesão ao tratamento sobre a qualidade de vida (QV), especialmente no período da adolescência. Assim, esta dissertação teve como objetivo investigar as relações entre adesão ao tratamento e qualidade de vida em adolescentes com Diabetes Mellitus Tipo 1 (DM1), e foi organizada em dois estudos empíricos. O primeiro estudo investiga os preditores da QV, enquanto o segundo estudo enfoca a adesão ao tratamento, verificando variáveis associadas. Participaram da pesquisa 122 adolescentes com diagnóstico de DM1, com idades entre 12 e 18 anos (M=14,71; ±1,77), sendo 56,6% do sexo masculino. Foram utilizados os seguintes instrumentos: ficha de dados sociodemográficos, CEAT-VIH adaptado para tratamento com insulina, Questionário de Atividades de Autocuidado com o Diabetes, Escala de Depressão, Ansiedade e Estresse (EDAE-A-21), além da consulta de prontuários para obter os valores da hemoglobina glicada (HbA1c). Foram observadas correlações significativas entre QV, autocuidado, adesão, sintomas de depressão, ansiedade e estresse, o número de internações e a média dos últimos dois valores mensurados de HbA1c. Além disso, quanto mais adesão ao tratamento prescrito e quanto maior o autocuidado relacionado às práticas de mudança de hábitos, como o cuidado com a alimentação e atividade física regular, melhor a QV dos adolescentes. Destaca-se a importância de compreender os fatores relacionados à adesão ao tratamento, especialmente na adolescência, e sua influência sobre a QV, a fim de minimizar os impactos negativos da doença na vida dos jovens, promover maior qualidade de vida e buscar melhorias no atendimento a populações com DM1. / Due to the complexity and problems of extension of living with a chronic illness, it is important to investigate the impact of disease and treatment adherence on the quality of life (QOL), especially during adolescence. Thus, this work aimed to investigate the relationship between treatment adherence and quality of life in adolescents with type 1 diabetes mellitus (T1DM), and it was organized in two empirical studies. The first study investigated the predictors of QOL, while the second study focused on treatment adherence, looking for associated variables. The study included 122 adolescents diagnosed with type 1 diabetes aged between 12 and 18 years (M= 14.71; ±1.77), and 56.6% were male. The instruments were used: sociodemographic data chart, CEAT -VIH adapted to insulin treatment, Self-Care Activities Questionnaire with Diabetes, Depression Scale, Anxiety and Stress (EDAE-A), and the records of query to get the values of glycated hemoglobin (HbA1c). There were significant correlations between quality of life, self-care, adherence, symptoms of depression, anxiety and stress, the number of hospitalizations and the average of the last two measured values of HbA1c. In addition, the more adherence to prescribed treatment and the higher the related self-care habits to change practices, such as attention to diet and regular physical activity, the better the adolescents’ quality of life . The study highlights the importance of understanding the factors related to adherence to treatment, especially in adolescence, and their impact on quality of life in order to minimize the negative impacts of the disease in the young people’ lives, thus promoting better quality of life and qualifying the assistance to T1DM population.

Orientador: Everardo Duarte Nunes / Tese (doutorado) - Universidade Estadual de Campinas, Faculdade de Ciencias Medicas / Made available in DSpace on 2018-08-08T17:38:46Z (GMT). No. of bitstreams: 1 Castellanos_MarceloEduardoPfeiffer_D.pdf: 2521608 bytes, checksum: b50c5620f0274a9f74cc7da8107f09b8 (MD5) Previous issue date: 2007 / Resumo: Os problemas crônicos de saúde têm recebido grande atenção por parte de profissionais, gestores e pesquisadores do campo da saúde, uma vez que têm um peso cada vez maior no perfil de morbi-mortalidade populacional das sociedades contemporâneas, desafiando a organização assistencial e a produção de conhecimentos científicos. Esta pesquisa investigou o processo de adoecimento crônico infantil dimensionado no cotidiano familiar e nas redes sociais de crianças com asma e com fibrose cística, atendidas no Ambulatório de Pediatria do Hospital de Clínicas da Universidade Estadual de Campinas. Através da abordagem qualitativa do problema de pesquisa levantado, foram selecionados 10 casos de cada doença, atendendo aos seguintes critérios: diagnóstico realizado há pelo menos um ano, níveis diferentes de gravidade, possuir entre 5 e 12 anos de idade, residir em domicílio localizado até no máximo 50km de distância do Município de Campinas. Foram realizadas entrevistas semi-estruturadas com todos os pacientes e suas mães (em alguns casos, também, com seus pais, irmãos e professores). Essas entrevistas abordaram diversos aspectos relacionados ao processo de adoecimento crônico infantil: trajetória de vida, relacionamentos familiares, rede social, escola, itinerário terapêutico, organização dos cuidados, assistência, mudanças e limites impostos pela doença. As entrevistas foram gravadas e transcritas, compondo assim o material empírico dessa pesquisa. Esse material foi classificado e organizado a partir de um conjunto amplo de categorias empíricas, após o que foi interpretado à luz das principais categorias analíticas que orientaram as bases teóricas e metodológicas da pesquisa: representação social, rede social e estigma. A apresentação dos resultados e análises é realizada de maneira integrada, em duas formas: em primeiro lugar, através de estudos de caso, onde a trajetória de vida familiar e o processo de adoecimento crônico infantil são abordados em relação a cada um dos casos estudados separadamente; em segundo lugar, através da análise global de todos os casos de asma e de todos os casos de fibrose cística. Dessa maneira, de um lado privilegiou-se a confecção de um texto analítico que enfoca as ¿narrativas biográficas¿ elaboradas em torno da experiência com a doença crônica, e, de outro lado realizou-se a identificação de aspectos centrais do processo de adoecimento infantil vivenciado em relação à asma e à fibrose cística, através de análises com maior grau de generalização. O conjunto das análises permitiu a compreensão dos modos como: a noção de gravidade é significada nas dinâmicas familiares e nas redes sociais das crianças; o diagnóstico de uma doença grave instaura uma ruptura biográfica na trajetória de vida familiar, a partir da qual o papel de cuidador e as expectativas de vida são ressignificados; a condição crônica implica o reordenamento do cotidiano familiar; a organização dos cuidados conduz a negociações realizadas na família, na rede social e nas instituições de saúde. Conclui-se que o processo de adoecimento crônico infantil é significado a partir de interações sociais realizadas nos serviços de saúde, nas famílias e nas redes sociais das crianças, onde são dimensionados os seus aspectos biomédicos e sóciomédicos / Abstract: Chronic diseases have brought the attention of professionals, managers and researchers in health sciences, since these are responsible for a great burden in the morbimortality profile of contemporaneous societies, challenging the health assistance system and production of scientific knowledge. This research evaluated the chronic infant illness process in the family daily living activities and in the social networks of children with asthma and cystic fibrosis, at the Ambulatório de Pediatria do Hospital de Clínicas da Universidade Estadual de Campinas. Using a qualitative approach to the research question, 10 cases of each disease were selected, meeting the following criteria: diagnosis > 1 year, different severity of disease, 5-12 years old, and home address < 50 Km from Campinas municipality. Semi-structured interviews were conducted with all patients and mothers (in some cases also with fathers, siblings and teachers). These interviews dealt with many aspects related to the chronic infant illness process: life path, familial relationships, social network, school, path treatment, health care organization, assistance, changes and boundaries imposed by the disease. The interviews were taped and transcribed, which resulted in the empiric material of this research. This material was classified and organized from a broad group of empiric categories, then interpreted using the main analytical categories that guided the theoretical and methodological basis of the research: social representation, social network and stigma. Results and analysis were integrated, using two approaches: first, through the case studies, where the family life path and the chronic infant illness process were evaluated in relation to each of the cases individually; second, through the global analysis of the two diseases. As such, on the one hand much attention was given to the composition of an analytical text focusing on the 'bibliographic narratives¿, driven by the experience with the chronic disease, and on the other hand, the main aspects of chronic infant illness process experienced in relation to asthma and cystic fibrosis were identified, through a broader analysis. The different perspectives of analysis allowed for an understanding of: the idea of severity is built in the family dynamics and in the child social networks; the diagnosis of a severe disease brings a rupture in the family life path, from which the role of caregiver and life expectations are redefined; the chronic condition implies in the reorganization of family daily life activities; the health care assistance organization leads the negotiations in the family, in the social network and in the health institutions. To conclude, the chronic infant illness process is built from the social interactions in the health care system, in the child families and social networks, where biomedical and sociomedical aspects are structured. / Doutorado / Saude Coletiva / Doutor em Saude Coletiva

The overall aim of this thesis was to increase our understanding and knowledge of patients’ experiences of living with multiple sclerosis (MS). A mixed-method design was used, including both qualitative and quantitative methods. Thirty-one immunologically treated MS patients were randomly selected and matched with patients without immunological treatment. Matching criteria were gender, impairment, time since diagnosis and age. One patient dropped out and therefore the final sample consisted of 61 patients. All 61 were interviewed (Studies I, III and IV) and completed the 36-item Short Form health survey questionnaire (SF-36), the Subjective estimation of Quality of Life questionnaire (SQoL), the Self-reported Impairment Check-list (SIC) (Study II) and the Montgomery–Asberg Depression Rating Scale questionnaire (MADRS) (Study III). The interviews were subjected to content analysis. Initial symptoms and being diagnosed with MS were described in terms of becoming vulnerable and remaining in that vulnerability long after the diagnosis. Eventually the patients were able to manage this emotional distress and acquired strength in their illness situation (Study I). In the matched analysis, 29 pairs of patients were included after internal drop-out. There were no statistically significant differences between the treatment and control groups. Concerning the total group of 61 patients, the self-reported impairment check-list showed that they had various problems of impairment, most evident in balance and walking. The score on health-related quality of life (SF-36) was reduced, disclosing a negative influence on vitality, physical role and function. However, subjective quality of life (SQoL) was not reduced, showing that the patients estimated their well-being to be quite unaffected (Study II). Thirty-eight of the 61 patients (62%) experienced chronic sorrow (Study III). The group were not depressed in general, only four having mild symptoms of depression, revealing that chronic sorrow is a particular form of emotional distress in MS. Chronic sorrow was experienced in terms of loss of hope, loss of control over the body and loss of integrity and dignity. When the patients could not adequately manage their sorrow and lacked support, they were struggling with their vulnerability. In the successful management of MS, losses and emotional distress are managed in such a way as to enhance personal growth, appreciation and trust in life. The theoretical model of chronic sorrow facilitated the sorting of the empirical data and the linking of these data to theory, showing the usefulness of the model (Study IV).

Social connectedness, feelings of belonging and closeness with the social world, has been identified as an important aspect for the physical, emotional, and collective well-being. People faced with chronic illness may feel like they no longer belong, and this lack of connectedness may have a negative impact on health, well-being, and psychological functioning. The present study investigated social connectedness and quality of life in 151 patients with ongoing symptoms of chronic illness. It was hypothesized that lower levels of social connectedness would be associated with poorer health-related quality of life and more depression. Participants (N =151, 85.4% women, Mage = 46.5) completed four online surveys that measured the level of their connectedness (Social Connectedness Scale) and their health related quality of life (Depression PHQ Scale and the SF-36 Scale). Overall, the hypotheses were supported with social connectedness being a significant predictor of depression and seven of the eight subscales on the health outcomes SF-36 measure. There was an increase in physical and social functioning, emotional well-being, and energy as the patients’ level of social connectedness increased. Meanwhile, decreased feelings of social connectedness were associated with greater pain and role limitations due to physical health and emotional problems. These findings suggest that feelings of interpersonal closeness and belonging can be an important factor in health outcomes and quality of life within a chronically ill population.

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.

Diabetes is a illness many people have heard of and think they understand, yet many diabetic learners go unrecognised and unnoticed. The research question of the study was to determine the developmental and learning needs and the assets of the learner with type I diabetes in the foundation phase. The study had the following aims concerning learners with type I diabetes in the foundation phase: • To identify the developmental and learning needs and the assets of these learners • To provide knowledge about and understanding of these learners • To rally friends, family, the school, teachers and the community to become external and internal asset builders in the development of these learners. The ecological perspective was viewed as an appropriate framework for conceptualising this study. The needs and asset-based approach was included in the theoretical framework to gain a holistic view of these learners. This was a qualitative ethnographic study using case studies. The research was based on the interpretative paradigm. After an in-depth literature survey, data were collected in four phases in questionnaires, followed by semi-structured interviews held with a non-random sample of three learners with type I diabetes drawn from different cultures, their parents and teachers. The semi-structured interviews were recorded and transcribed and the data coded and analysed inductively. A narrative approach was used for interpreting the data. The relationship between the participants and their ecology was investigated to determine the factors in the learners’ environment. The learners’ developmental and learning needs and the assets inherent in each unique participant were identified. / Dissertation (MPhil (Education for Community Development))--University of Pretoria, 2004. / Curriculum Studies / unrestricted