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[感染人类嗜T淋巴细胞病毒者:疾病的意义、患病经历及其与工作的关系]

[People living with HTLV: meanings of the illness, experience of illness and its relationship with work].

作者信息

Teixeira Maria Clara Leal, Hennington Élida Azevedo

机构信息

Programa de Pós-Graduação em Saúde Pública, Escola Nacional de Saúde Pública Sergio Arouca (ENSP), Fundação Oswaldo Cruz (Fiocruz). R. Leopoldo Bulhões 1480, Manguinhos. 21041-210 Rio de Janeiro RJ Brasil.

Centro de Estudos da Saúde do Trabalhador e Ecologia Humana, ENSP, Fiocruz. Rio de Janeiro RJ Brasil.

出版信息

Cien Saude Colet. 2021 Dec;26(12):6049-6057. doi: 10.1590/1413-812320212612.15362021. Epub 2021 Jul 30.

DOI:10.1590/1413-812320212612.15362021
PMID:34909997
Abstract

It is estimated that 2.5 million people are infected with the human T-cell lymphotropic virus (HTLV) in Brazil, mainly among afro-descendant populations with low socioeconomic status. The article presents results of the research that aimed to understand the illness experience of people living with HTLV, the ways of going about life and the relationships with work. Thirty-one semi-structured interviews were conducted with frequenters of an infectious diseases research institute. The oral narratives constituted the corpus that was analyzed using Sketch Engine software. Discourse analysis used references from Social Sciences, with emphasis on the health-work relationship. The manifestations of HTLV cause functional impairment and affect living standards, with repercussions on formal, informal, and domestic work. The narratives revealed complaints of physical symptoms and other health-related problems, in addition to prejudice, lack of family support and significant repercussions on work, namely issues aggravated by the absence of public policies aimed at people living with HTLV. The material, symbolic and subjective conditions caused by the progressive loss of physical capacity and early retirement affect not only the physical sphere, but also the psychic and social areas.

摘要

据估计,巴西有250万人感染了人类T细胞嗜淋巴细胞病毒(HTLV),主要集中在社会经济地位较低的非裔人群中。本文介绍了一项研究的结果,该研究旨在了解HTLV感染者的患病经历、生活方式以及与工作的关系。研究人员对一家传染病研究所的常客进行了31次半结构化访谈。这些口述内容构成了语料库,并使用Sketch Engine软件进行分析。话语分析采用了社会科学的参考文献,重点关注健康与工作的关系。HTLV的症状会导致功能障碍,影响生活水平,对正式、非正式和家庭工作都有影响。这些叙述揭示了身体症状和其他与健康相关问题的抱怨,此外还有偏见、缺乏家庭支持以及对工作的重大影响,即由于缺乏针对HTLV感染者的公共政策而加剧的问题。身体能力的逐渐丧失和提前退休所导致的物质、象征和主观条件不仅影响身体领域,还影响心理和社会领域。

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