Journal des maladies infectieuses et de la thérapie

Abstrait

Reproductive Decisions among People Living with Human T-cell Lymphotropic Virus Type 1 (HTLV-1)

KF Zihlmann, AT Alvarenga and J Casseb

Background: Human T-cell Lymphotropic Virus type 1 (HTLV-1) infection is a neglected public health problem. The majority of carriers is asymptomatic and may have a low risk of developing related diseases. The aims of this study were to discuss reproductive decisions of women and men living with HTLV-1 infection to assess their perception of infection and associated diseases, expectations regarding Mother-to-Child Transmission (MTCT), and whether health care conditions may affect their reproductive decisions.

Methods: A qualitative study with 13 adult HTLV-1-seropositive subjects without co-infections. For data analysis, life history trajectories and categories of discourse were constructed for each respondent.   Results: Reproductive decisions required the reassessment of life projects in the new context of HTLV-1 infection. Thus, a child remains representative of a “new meaning to life”. There is a need for accurate information regarding the risk of MTCT and the transmission risk to a serodiscordant partner while trying to conceive. It was also observed that a couple’s relationship and emotional dynamics were crucial in the process of making reproductive decisions. It was emphasized that the inhibition of breastfeeding was seen as a reliable method in preventing transmission, favouring the decision to have a child.   Conclusions: Reproductive decisions were influenced by information transmitted by healthcare providers that only rarely does a person with HTLV-1 become sick due to the infection. Because this infection is incurable, reproductive decisions are crucial. The importance of reproductive decisions highlight the need for accurate information dissemination and infection prevention, perhaps only made possible through effective interdisciplinary means.