Uma questão de gosto?
Qualidade de vida no dia a dia com Esclerose Lateral Amiotrófica (ELA) e uma sonda de gastrostomia
DOI:
https://doi.org/10.48006/2358-0097/V9N1.E9104Palabras clave:
qualidade de vida, etnografia, cotidiano, Esclerose Lateral Amiotrófica, sonda de gastrostomia, metodologia de pesquisaResumen
Embora as pessoas frequentemente se refiram à qualidade de vida e haja uma respeitável tradição de pesquisa para estabelecê-la, o significado do termo não é claro. Neste artigo, estudamos qualitativamente um procedimento médico cujos efeitos quantitativos são documentados como incertos. Fazemos isso para aprender mais sobre o significado do termo qualidade de vida quando estudado na vida cotidiana. Com a ajuda desses achados, refletimos sobre os meandros de objetivar e medir a qualidade de vida usando desenhos de pesquisa quantitativa. Nosso caso de análise é o da sonda de gastrostomia para pacientes com Esclerose Lateral Amiotrófica, uma grave doença do neurônio motor que, rápida e progressivamente, incapacita os pacientes. Estudamos como alguns pacientes, que viviam nos Países Baixos, anteciparam e viveram com uma sonda de gastrostomia no curso de sua deterioração física. Nossa análise mostra que a qualidade de vida relacionada à sonda de gastrostomia deve ser entendida como um processo e não como um resultado. A sonda torna-se uma coisa diferente à medida que os pacientes transitam pelas várias fases de sua doença, devido a mudanças em sua condição, circunstâncias de vida, preocupações e valores. Existem apreciações muito distintas relativas à maneira como a sonda de gastrostomia modifica a aparência e a sensação do corpo. Alguns pacientes recusam o procedimento, porque sentem que desfigura o corpo, enquanto outros são indiferentes aos efeitos em sua aparência. Nossa conclusão é que essas diferenças são difíceis de compreender a partir de estudos quantitativos, porque “questões de gosto” e valores não são distribuídas em uma população da mesma forma que respostas fisiológicas a algum medicamento. Estudos de efeito assumem que respostas fisiológicas sejam mais ou menos as mesmas para todos, com diferenças apenas graduais. Nossa análise da qualidade na vida cotidiana, no entanto, mostra que o que um tratamento vem a ser e como ele é valorizado abarca generalidades para subgrupos e não para populações.
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