Caregiver perspectives on TB-related stigma experienced by young children
BACKGROUND: 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. METHODS: This study was conducted in South Africa within a prospective observational TB diagnostic cohort study, ‘Umoya.’ StopTB sti...
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| Format: | Article |
| Language: | English |
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International Union Against Tuberculosis and Lung Disease (The Union)
2025-08-01
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| Series: | IJTLD Open |
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| Online Access: | https://www.ingentaconnect.com/contentone/iuatld/ijtldo/2025/00000002/00000008/art00001 |
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| author | L.S. Johnson M.G. Anthony C. Purdy V. Luke H. van Deventer M. van Niekerk L. Viljoen M.M. van der Zalm on behalf of the Umoya study team |
| author_facet | L.S. Johnson M.G. Anthony C. Purdy V. Luke H. van Deventer M. van Niekerk L. Viljoen M.M. van der Zalm on behalf of the Umoya study team |
| author_sort | L.S. Johnson |
| collection | DOAJ |
| description | BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: Deepening our understanding of stigma is critical to improving outcomes and experiences of young children and their families affected by TB. |
| format | Article |
| id | doaj-art-175e0dacd8c94bcaaea7152bfdef9e48 |
| institution | DOAJ |
| issn | 3005-7590 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | International Union Against Tuberculosis and Lung Disease (The Union) |
| record_format | Article |
| series | IJTLD Open |
| spelling | doaj-art-175e0dacd8c94bcaaea7152bfdef9e482025-08-20T03:07:10ZengInternational Union Against Tuberculosis and Lung Disease (The Union)IJTLD Open3005-75902025-08-012844344910.5588/ijtldopen.25.02931Caregiver perspectives on TB-related stigma experienced by young childrenL.S. Johnson0M.G. Anthony1C. Purdy2V. Luke3H. van Deventer4M. van Niekerk5L. Viljoen6M.M. van der Zalm7on behalf of the Umoya study teamDesmond Tutu TB Centre, Stellenbosch University, South Africa;Desmond Tutu TB Centre, Stellenbosch University, South Africa;Desmond Tutu TB Centre, Stellenbosch University, South Africa;Desmond Tutu TB Centre, Stellenbosch University, South Africa;Desmond Tutu TB Centre, Stellenbosch University, South Africa;Desmond Tutu TB Centre, Stellenbosch University, South Africa;Desmond Tutu TB Centre, Stellenbosch University, South Africa;Desmond Tutu TB Centre, Stellenbosch University, South Africa;BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: Deepening our understanding of stigma is critical to improving outcomes and experiences of young children and their families affected by TB.https://www.ingentaconnect.com/contentone/iuatld/ijtldo/2025/00000002/00000008/art00001tuberculosispaediatric tbsouth africapsychosocial well-being |
| spellingShingle | L.S. Johnson M.G. Anthony C. Purdy V. Luke H. van Deventer M. van Niekerk L. Viljoen M.M. van der Zalm on behalf of the Umoya study team Caregiver perspectives on TB-related stigma experienced by young children IJTLD Open tuberculosis paediatric tb south africa psychosocial well-being |
| title | Caregiver perspectives on TB-related stigma experienced by young children |
| title_full | Caregiver perspectives on TB-related stigma experienced by young children |
| title_fullStr | Caregiver perspectives on TB-related stigma experienced by young children |
| title_full_unstemmed | Caregiver perspectives on TB-related stigma experienced by young children |
| title_short | Caregiver perspectives on TB-related stigma experienced by young children |
| title_sort | caregiver perspectives on tb related stigma experienced by young children |
| topic | tuberculosis paediatric tb south africa psychosocial well-being |
| url | https://www.ingentaconnect.com/contentone/iuatld/ijtldo/2025/00000002/00000008/art00001 |
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