Representação Social do HTLV entre pessoas que vivem com a infecção: implicações para a qualidade de vida

Abstract

Introduction. Human T-Cell Lymphotropic Virus Type 1 (HTLV-1) is a sexually transmitted virus that can lead to a debilitating neurological condition. There is no vaccine or treatment for the infection, and its forms of transmission are through unprotected sex, sharing of needles and syringes, blood and organ transfusions, and vertical transmission from mother to child, mainly through breastfeeding. Objective: To analyze the social representation of HTLV among people living with the infection and the implications for quality of life. Method: Field study, descriptive and exploratory, qualitative and guided by the Theory of Social Representations (TSR), from the perspective of social psychology. The study setting was the Central Institute of the Hospital das Clínicas (HCFMUSP), located in São Paulo, with 36 participants undergoing outpatient follow-up. Data collection was performed using a form for sociodemographic and clinical characterization organized in a Microsoft Excel 2013 spreadsheet and presented in tables, analyzed using descriptive statistics; and by the semistructured interview technique treated by the lexical analysis technique, using the R interface software for Multimension Analysis of Texts and Questionnaires (Iramuteq), employing descending hierarchical classification and discussed in light of the assumptions of the TRS. Result: The characterization data showed that the group is is predominantly composed of (83.3%) women, predominantly over 60 years old (41.7%), with an income of around one minimum wage (38.9%), time since diagnosis greater than 10 years (47.2%), where 64% presented some type of symptom and classified their quality of life as poor or reasonable (58.3%). The analysis of the diagnosis generated 4 classes of analysis: the discovery of HTLV, the impact and obtaining information about the infection and associated diseases; The negative aspects, meanings, prejudice and discrimination associated with HTLV and the consequences for people's daily lives; Living with HTLV: implications for affective and social relationships, restrictions due to associated diseases and treatment methods; Living well and quality of life: concepts and influencing factors. Data analysis showed that HTLV infection causes changes in the lives of people affected by this virus, affecting affective and social relationships, where the clinical condition of the infection significantly interferes in a distinct way in the experience with HTLV. Conclusion: It is concluded that this study can help health professionals and professionals from other areas to understand how individuals with HTLV think, place and position themselves in relation to the disease, its treatment and healthy quality within a multidimensional and subjective construct that transcends the health field.