Impact of pandemic social restriction measures of COVID-19 on the social participation of people with htlv-1: a transversal study

Abstract

INTRODUCTION: Human T-cell Lymphotropic Virus type 1 (HTLV-1) is classified as a retrovirus and may be directly associated with neurological diseases. As it is a disease neglected by health and governmental authorities in a world panorama, there is still a lack of scientific evidence that investigates the impact of HTLV-1 in the scope of the social participation of this population. OBJECTIVE: To analyze the impact of the COVID-19 pandemic on the social participation of individuals with HTLV-1. MATERIAL AND METHODS: This is a transversal observational study carried out with individuals with HTLV-1, linked to the HTLVida Association. The data collection was carried out through interviews in a videoconference. The first interview aimed to explore the clinical and sociodemographic characteristics of the participants. In contrast, the second one investigated the social participation of individuals comparing two periods (before and during the COVID-19 pandemic) through the application of the Community Integration Questionnaire (CIQ). RESULTS: Eleven individuals were interviewed, predominantly female (72.7%), with a median age of 57 (52-66). About the results regarding social participation evaluated by the CIQ, was observed maintenance of the score in the domain of Integration in the home environment, a difference of 3.00 points in the domain of Integration in the social environment, a difference of 2.00 points in the domain of Integration in the work and school environment, and a difference of 6.00 points in the total CIQ score. CONCLUSION: A decrease in the social participation of individuals with HTLV-1 during the COVID-19 pandemic was compared to the period before the start of the pandemic.