The other side of pediatric tuberculosis: social impact, stigma, and discrimination

Abstract

Introduction: tuberculosis (TB) in children and adolescents (C&A) is a growing health concern in Uruguay. While efforts have focused on early identification, prompt diagnosis, and timely treatment, there are less explored dimensions, such as the social impact and stigmatization the disease generates in the daily lives of C&A and their families.
Objectives: describe the sociodemographic characteristics of children under 15 years of age diagnosed with TB in 2024 and 2025, residing in Montevideo and the Metropolitan Area. To estimate school absenteeism caused by the disease due to indications for respiratory isolation, the need for hospitalization, medical follow-ups, and treatment supervision. Explore experiences of stigmatization and discrimination in the school environment perceived by C&A.
Methodology: an observational descriptive study combining a retrospective analysis (TB cases in children under 15 carried out between January 1, 2024, and June 30, 2025, in Montevideo and the metropolitan area) and a cross-sectional analysis (assessment of stigma in C&A aged 8 to 14 undergoing treatment in July 2025). Data were obtained from the National Tuberculosis Registry. Variables included sociodemographic data (age, sex, department, and municipality; family composition) and clinical data (TB form, days of hospitalization, treatment duration according to regimens). Social impact: estimation of school absenteeism (initial respiratory isolation—time from diagnosis to school return; medical check-ups and in-person treatment supervision). Stigma assessment: adaptation of the Child Tuberculosis Stigma Scale (CTSS)—a version not locally validated, used for exploratory purposes in this study—evaluating perceived stigma, internalized stigma, and discrimination.
Results: a total of 170 C&A were diagnosed with TB in Montevideo and the Metropolitan area: 111 in 2024 and 59 in 2025. Males: 51%. Mean age: 8 years (DE 4,1 years), range: 8 months to 14 years and 10 months. Residents of Montevideo: 68% (Municipality A: 22%; D: 15%; and F: 31%). Single-parent households: 87%; female-parent households: 82%. ASSE (public health system) users: 82%. Pulmonary TB localization: 91%. Hospitalization: 33/170 (19%), average stay: 9.6 days (DE 8 days). Treatment evaluation: successful: 74%; loss to follow-up: 3%; currently in treatment: 23%. Duration: 4-month regimen: average 150 days (range 118–182); 6-month treatment: average 197 days (range 163–298). Respiratory isolation: average 12 days (range 5–26 days); medical check-ups: mean 6 visits (range 4–11); in-person treatment supervision: mean 20 days (range 12–26 days). Surveys (N=15): Global result: low level of stigma (100%: 0–6 points). Sub-dimensions: 1. Perceived stigma: 100% low; 2. Internalized stigma: 80% low, 20% moderate; 3. Discrimination and exclusion: 100% low. By item: 46% prefer not to tell anyone they have TB; 34% feel it is their fault they are sick; 33% feel sad or ashamed of having TB; 33% feel that people are afraid to come near them because of their illness.
Conclusions: pediatric tuberculosis in Uruguay mostly affects C&A from vulnerable backgrounds, single-parent households, and users of the public health system. School absenteeism due to the disease is non-negligible, affecting the integral development and socialization of C&A. Stigmatization, although low in global scores, manifests in feelings of shame and guilt, which may affect self-esteem and therapeutic adherence.