# Caregiver perspectives on TB-related stigma experienced by young children

## TL;DR

This study explores how caregivers in South Africa perceive and experience TB-related stigma when their young children are diagnosed with TB.

## Contribution

The study provides new insights into the specific types of stigma experienced by caregivers of young children with TB, including anticipated and internalized stigma.

## Key findings

- Anticipated stigma was a common concern among caregivers, including worries about gossip and children's emotional well-being.
- Internalized stigma was the least affirmed domain, and it did not delay treatment for the children.
- Themes of stigma were further explored through interviews, highlighting comparisons to HIV-related stigma.

## Abstract

TB-related stigma often stems from a fear of TB infection, power dynamics between social groups, and an association of TB with socially undesirable traits.

This study was conducted in South Africa within a prospective observational TB diagnostic cohort study, ‘Umoya.’ StopTB stigma questionnaires and activity-based interviews were administered to caregivers of children aged 0–9 years with presumptive pulmonary TB (PTB) 16 to 24 weeks after enrollment.

In total, 64 caregivers of 70 children (median age: 2y) with PTB completed the questionnaire. Most children (56%) had a known TB contact in the household. The questionnaire revealed that anticipated stigma was a common concern, with worries about people gossiping or speaking badly about their children (16.7%) or their child’s feelings being hurt because of their TB diagnosis (16.7%). Internalized stigma of the child, as perceived by their caregiver, was the least affirmed stigma domain. Overall, caregiver perceptions of internalized stigma did not delay treatment. Twelve of these caregivers were also interviewed, which demonstrated themes of anticipated and internalized stigma, and comparisons to HIV stigma.

Deepening our understanding of stigma is critical to improving outcomes and experiences of young children and their families affected by TB.