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Publicação
Vivências da doença genética na família
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Orientador(es)
Resumo(s)
A pertinência deste estudo tem por base o facto de consideramos que a família, representa uma unidade de
cuidado que é in&uenciada pelo meio cultural na qual ela está inserida, pelo sistema de crenças, valores e signi)-
cados compartilhados, e pelas condições socioeconómicas e educacionais in&uenciando a vivência do processo
de saúde -doença. Desenvolvemos o nosso estudo em famílias com membros doentes com Polineuropatia Amiloidótica
Familiar (PAF). O nosso propósito com este estudo é contribuir para o desenvolvimento de saberes que
visem a compreensão do processo saúde-doença em famílias com PAF e este propósito pode ajudar a revelar lógicas
implícitas, que possam estar subjacentes a comportamentos de saúde adoptados. Utilizamos uma abordagem
de estudo multicaso, os dados foram colhidos utilizando a entrevista semi-estruturada a 4 famílias (2 famílias
assintomáticas e 2 famílias sintomáticas). Os resultados salientam a importância de olhar para a família, de acordo
com as suas aprendizagens, experiências e estágio no ciclo de vida.
8e relevance of this study is based on the fact that we believe that family represents a unit of care that is in&uenced by the cultural milieu in which it is inserted, the system of beliefs, values and shared meanings, and educational and socio-economic conditions in&uencing the experience of the health and disease process. We develop our study in families with sick members with Familial Amyloid Polyneuropathy (FAP). Our purpose with this study is to contribute to the development of knowledge aimed at understanding the health-disease process in families with FAP and this goal can help reveal implicit logic, which may underlie adopted health behaviors.We use a multi case study approach, data were collected using semi-structured interview of four families (two families asymptomatic and two families symptomatic).8e results highlight the importance of looking to family, according to their learning, experience and stage in the life cycle.
8e relevance of this study is based on the fact that we believe that family represents a unit of care that is in&uenced by the cultural milieu in which it is inserted, the system of beliefs, values and shared meanings, and educational and socio-economic conditions in&uencing the experience of the health and disease process. We develop our study in families with sick members with Familial Amyloid Polyneuropathy (FAP). Our purpose with this study is to contribute to the development of knowledge aimed at understanding the health-disease process in families with FAP and this goal can help reveal implicit logic, which may underlie adopted health behaviors.We use a multi case study approach, data were collected using semi-structured interview of four families (two families asymptomatic and two families symptomatic).8e results highlight the importance of looking to family, according to their learning, experience and stage in the life cycle.
Descrição
Palavras-chave
Doença genética Família Enfermagem