Não conseguindo enfrentar sozinho as demandas e dificuldades do tratamento: vivências e razões do adolescente hemofílico
Data
2009
Autores
Vrabic, Ana Claudia Acerbi 
Orientadores
Ribeiro, Circéa Amália
Tipo
Dissertação de mestrado
Título da Revista
ISSN da Revista
Título de Volume
Resumo
A hemofilia é um distúrbio de coagulação, hereditário, transmitido geneticamente e caracterizado pela deficiência dos fatores de coagulação circulantes no sangue, ocasionando sangramentos espontâneos ou pós-traumáticos. Acomete quase exclusivamente indivíduos do sexo masculino e, por ser uma condição crônica, demanda a necessidade de tratamento durante toda a vida, com envolvimento da equipe multidisciplinar e participação ativa do hemofílico e sua família. A resistência ao acompanhamento da hemofilia ocorre com frequencia na população de adolescentes, implicando não só na falência de seu êxito como no desgaste da relação equipe-paciente. Este estudo teve como objetivo compreender as razões pelas quais o adolescente hemofílico não adere ao tratamento recomendado para a hemofilia. O referencial teórico foi o Interacionismo Simbólico cujo foco de estudo é a natureza da interação. Como referencial metodológico, utilizou-se o Interacionismo Interpretativo que busca identificar vivências que afetam e moldam o significado que as pessoas dão a elas próprias, a seus projetos e que deixam marcas em suas vidas, denominadas epifanias. Participaram do estudo sete adolescentes cadastrados e atendidos no ambulatório do Serviço de Hemofilia de um hospital universitário da cidade de São Paulo, que não estão aderindo ao tratamento preconizado. A estratégia empregada para a coleta de dados foi a entrevista semiestruturada apoiada na questão norteadora: “Conte-me o que leva você a não seguir o tratamento recomendado para a hemofilia?”. A análise dos dados revelou a emergência de quatro temas representativos que se configuraram como epifanias: Tendo que assumir a responsabilidade do tratamento; Enfrentando dificuldades para realizar o tratamento; Julgando que faz o tratamento adequado; e Desacreditando na eficácia do tratamento e na eficiência do serviço que permitiram compreender que, embora lhes seja atribuída a responsabilidade do seguimento de seu tratamento, o adolescente vivencia essa experiência Não conseguindo enfrentar sozinho as demandas e dificuldades do tratamento. Os resultados oferecem subsídios para que se possa repensar a assistência prestada aos adolescentes hemofílicos e a organização do serviço com a complexidade, que lhe é característica e necessária e favorecer a condução de um atendimento voltado às demandas dessa população, o que é essencial para seu sucesso com bons resultados.
Hemophilia is an inherited bleeding disorder, transmitted genetically and characterized by the deficiency of circulating coagulation factor in the blood, causing spontaneous or post traumatic bleeds. It attacks almost exclusively men and for being a chronic condition, demands treatment during all life, with the involvement of multidisciplinary team and active participation of the hemophiliac and his family. The resistance to the accompaniment of hemophilia occurs frequently in adolescents, implying not only in insolvency of success as well as erosion in the team-patient relationship. The aim of this study was to understand the reasons why hemophiliac adolescents do not adhere to the treatment recommended for hemophilia. The theoretical referencial was Symbolic Interacionism having as focus of study the nature of the interaction. As methodological reference the preferred system was Interpretative Interacionism, which identifies experiences that affect and mold the meaning people give to themselves, their projects, and leave marks in their lives – which is called epiphanies. Seven adolescents registered and taken care of at the Hemophilia Service of a universitary hospital in São Paulo, who are not adhering to the recommended treatment, participated. The strategy used for the collection of data was the semi-structured interview based on the question: “Tell me why you do not follow the treatment recommended for hemophilia?”. The analysis of the data disclosed the emergency of four representative subjects that was configured as epiphanies: Having to take the responsibility of the treatment; Facing difficulties to realize the treatment; Judging they are performing the adequate treatment; Disbelief in the effectiveness of treatment and efficiency of service, allowing the understanding that, although the responsibility of the pursuit of his treatment is attributed to him, the adolescent lives this experience Not managing to face alone the demands and difficulties of the treatment. The results offer subsidies to rethink the assistance given to hemophiliac adolescents and in the organization of the service with its complexity and necessary characteristic, as well as favored the meeting of the demands of this population, which is essential for its success with good results.
Hemophilia is an inherited bleeding disorder, transmitted genetically and characterized by the deficiency of circulating coagulation factor in the blood, causing spontaneous or post traumatic bleeds. It attacks almost exclusively men and for being a chronic condition, demands treatment during all life, with the involvement of multidisciplinary team and active participation of the hemophiliac and his family. The resistance to the accompaniment of hemophilia occurs frequently in adolescents, implying not only in insolvency of success as well as erosion in the team-patient relationship. The aim of this study was to understand the reasons why hemophiliac adolescents do not adhere to the treatment recommended for hemophilia. The theoretical referencial was Symbolic Interacionism having as focus of study the nature of the interaction. As methodological reference the preferred system was Interpretative Interacionism, which identifies experiences that affect and mold the meaning people give to themselves, their projects, and leave marks in their lives – which is called epiphanies. Seven adolescents registered and taken care of at the Hemophilia Service of a universitary hospital in São Paulo, who are not adhering to the recommended treatment, participated. The strategy used for the collection of data was the semi-structured interview based on the question: “Tell me why you do not follow the treatment recommended for hemophilia?”. The analysis of the data disclosed the emergency of four representative subjects that was configured as epiphanies: Having to take the responsibility of the treatment; Facing difficulties to realize the treatment; Judging they are performing the adequate treatment; Disbelief in the effectiveness of treatment and efficiency of service, allowing the understanding that, although the responsibility of the pursuit of his treatment is attributed to him, the adolescent lives this experience Not managing to face alone the demands and difficulties of the treatment. The results offer subsidies to rethink the assistance given to hemophiliac adolescents and in the organization of the service with its complexity and necessary characteristic, as well as favored the meeting of the demands of this population, which is essential for its success with good results.
Descrição
Citação
VRABIC, Ana Claudia Acerbi. Não conseguindo enfrentar sozinho as demandas e dificuldades do tratamento: vivências e razões do adolescente hemofílico. 2009. 130 f. Dissertação (Mestrado) - Escola Paulista de Medicina, Universidade Federal de
São Paulo, São Paulo, 2009.