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Dilemas e Tensões entre Atores Vinculados aos "Mundos" da Doença de Machado-Joseph: Contrastes e Afinidades na (In)visibilidade Pública da Condição de Doente
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Orientador(es)
Resumo(s)
Esta tese é o culminar de um processo de investigação iniciado durante a
licenciatura. Baseado nas vivências e representações sobre a Doença de MachadoJoseph,
pretende-se que este estudo seja um contributo para a compreensão das
implicações que a doença e a condição de doente têm no quotidiano dos indivíduos
portadores de Doença de Machado-Joseph e dos seus familiares e cuidadores.
Tratando-se de uma doença neurológica que não tem tratamento nem cura, são
graves as alterações na fisionomia dos portadores sintomáticos, bem como inúmeras as
limitações na mobilidade e na capacidade de comunicação, provocando, muitas vezes,
imobilidade. O facto de ser uma doença genética hereditária autossómica dominante
provoca tensões entre os atores vinculados aos “mundos” da Doença de MachadoJoseph,
pois portadores, familiares e cuidadores, médicos, outros profissionais das
ciências sociais e humanas e dirigentes associativos nem sempre possuem visões e
perspetivas similares sobre os dilemas implicados na gestão individual e familiar da
doença. Nesse sentido, é dada particular ênfase aos contrastes e afinidades
relacionados com a (in)visibilidade pública da doença e/ou da condição de doentes e à
estigmatização e luta pelo reconhecimento.
Nesta investigação apostou-se no alargamento possível dos espaços geográficos
onde foi realizada a recolha de informação, tendo sido abrangidos, além das ilhas das
Flores e de São Miguel, no Arquipélago dos Açores, os estados brasileiros de Rio Grande
do Sul e de Mato Grosso do Sul.
Dada a complexidade das temáticas abordadas e a abrangência dos atores
envolvidos, optou-se por uma estratégia metodológica que recaiu na aplicação de um
modelo de métodos mistos, permitindo a recolha e análise de dados qualitativos,
através da realização de entrevistas, e de dados quantitativos, através da aplicação
online de um inquérito por questionário.
Tendo por base o Interacionismo Simbólico e a Teoria Crítica, pretende-se
compreender a influência da doença no quotidiano dos portadores e nas suas interações
sociais e a forma como os “olhares”, quer dos portadores quer dos restantes atores
vinculados aos “mundos” da Doença de Machado-Joseph, são moldados pelas
dimensões que envolvem o seu “mundo” e sua identidade de doentes. No processo de
(re)conversão identitária moldado pela enfermidade, estes portadores resistem e lutam
de modos diferentes na persecução da sua valorização perante os outros, na luta pelo
(re)conhecimento da doença e da sua condição de doentes.
This thesis is the culmination of an investigative process that began with the degree thesis. Based on experiences and representations related to the MachadoJoseph Disease, it is intended to be a contribution to facilitate a more comprehensive and accurate understanding of the implications of the disease and the patient condition, in everyday life of individuals with Machado-Joseph disease and their caregivers. This is a rare hereditary autosomal dominant disease with no cure, with symptoms that causes severe changes in the physiognomy of patients and serious limitations to their mobility and communication skills, leading to immobility. On the other hand, the fact that it is an inherited genetic disease, autosomal dominant, causes tensions between the actors linked to the "worlds" of Machado-Joseph Disease because patients, families and caregivers, physicians, other professionals in the social and human sciences and association leaders do not always have similar visions and perspectives on the dilemmas involved in individual and family management of the disease. Therefore, it is given particular emphasis on the contrasts and affinities related to the public (in)visibility of the disease and/or patient condition and stigmatization and struggle for recognition. In this investigation there was a commitment to extend the geographical areas to be analyzed having been covered, in addition to the islands of Flores and San Miguel, in the Azores, the Brazilian states of Rio Grande do Sul and Mato Grosso do Sul. Given the complexity of the subjects addressed and the scope of the actors involved, a methodology that consisted on the application of a model of mixed methods was chosen, allowing for the collection and analysis of qualitative data through interviews, and quantitative data through the online application of a questionnaire survey. Based on the Symbolic Interaction and Critical Theories, the aim of this thesis is to understand the influence of the disease on the daily life of patients and their social interactions and how the "points of view" of either the carriers or the other actors linked to the "worlds" of Machado-Joseph Disease are shaped by dimensions involving their "world" and their patient identity. In the process of identity (re) conversion shaped by the disease, these patients resist and fight in different ways in pursuit of their appreciation to others, in a process of struggle for (re)cognition of the disease and of their patient condition.
This thesis is the culmination of an investigative process that began with the degree thesis. Based on experiences and representations related to the MachadoJoseph Disease, it is intended to be a contribution to facilitate a more comprehensive and accurate understanding of the implications of the disease and the patient condition, in everyday life of individuals with Machado-Joseph disease and their caregivers. This is a rare hereditary autosomal dominant disease with no cure, with symptoms that causes severe changes in the physiognomy of patients and serious limitations to their mobility and communication skills, leading to immobility. On the other hand, the fact that it is an inherited genetic disease, autosomal dominant, causes tensions between the actors linked to the "worlds" of Machado-Joseph Disease because patients, families and caregivers, physicians, other professionals in the social and human sciences and association leaders do not always have similar visions and perspectives on the dilemmas involved in individual and family management of the disease. Therefore, it is given particular emphasis on the contrasts and affinities related to the public (in)visibility of the disease and/or patient condition and stigmatization and struggle for recognition. In this investigation there was a commitment to extend the geographical areas to be analyzed having been covered, in addition to the islands of Flores and San Miguel, in the Azores, the Brazilian states of Rio Grande do Sul and Mato Grosso do Sul. Given the complexity of the subjects addressed and the scope of the actors involved, a methodology that consisted on the application of a model of mixed methods was chosen, allowing for the collection and analysis of qualitative data through interviews, and quantitative data through the online application of a questionnaire survey. Based on the Symbolic Interaction and Critical Theories, the aim of this thesis is to understand the influence of the disease on the daily life of patients and their social interactions and how the "points of view" of either the carriers or the other actors linked to the "worlds" of Machado-Joseph Disease are shaped by dimensions involving their "world" and their patient identity. In the process of identity (re) conversion shaped by the disease, these patients resist and fight in different ways in pursuit of their appreciation to others, in a process of struggle for (re)cognition of the disease and of their patient condition.
Descrição
Palavras-chave
Tensões Estigma Doença de Machado-Joseph Identidade Dilemas Luta pelo reconhecimento Dilemmas Tension Identity Stigma Struggle for recognition