Feminine voices: what are the main challenges faced by women living with HTLV-1?

Abstract

Human T-lymphotropic virus type 1 (HTLV-1) is associated with several clinical conditions. This study investigates the main challenges faced by women living with HTLV-1, a disproportionately affected population. The study employed analysis of qualitative and quantitative methods from 45 women monitored at the HTLV Reference Center in Vitória da Conquista, Bahia, between November 2023 and June 2024. The data were obtained by interviews and questionnaires. The majority of participants were aged between 40 and 59 years (51.1%) and self-identified as Black, Indigenous, or People of Color (BIPOC) (66.7%). Notably, 13 (28.9%) of the participants identified psychological issues as the primary impact, often linked to the stigma of sexual transmission and the reluctance to disclose the diagnosis in their affective and family relationships. Furthermore, 20% reported difficulties in daily activities and 11% faced sexual health problems, challenges that, for women, can be exacerbated by issues of autonomy, dependence, and their role in the family environment. Participants also expressed fears related to disease progression and professional challenges. The findings reinforce the urgent need for enhanced and targeted support for women, including social assistance, healthcare services, and increased awareness to combat the stigma surrounding HTLV-1, promoting dignity and quality of life.