Foster, I;
Biewer, A;
Vanqa, N;
Makanda, G;
Tisile, P;
Hayward, SE;
Wademan, DT;
Anthony, MG;
Mbuyamba, R;
Galloway, M;
et al.
Foster, I; Biewer, A; Vanqa, N; Makanda, G; Tisile, P; Hayward, SE; Wademan, DT; Anthony, MG; Mbuyamba, R; Galloway, M; Human, W; van der Westhuizen, H-M; Friedland, JS; Medina-Marino, A; Schoeman, I; Hoddinott, G; Nathavitharana, RR
(2024)
"This is an illness. No one is supposed to be treated badly": community-based stigma assessments in South Africa to inform tuberculosis stigma intervention design.
BMC Glob Public Health, 2 (1).
p. 41.
ISSN 2731-913X
https://doi.org/10.1186/s44263-024-00070-5
SGUL Authors: Friedland, Jonathan Samuel
|
PDF
Published Version
Available under License Creative Commons Attribution. Download (1MB) | Preview |
|
![]() |
Microsoft Word (.docx) (Supplementary Material 1)
Supplemental Material
Download (29kB) |
|
![]() |
Microsoft Word (.docx) (Supplementary Material 2)
Supplemental Material
Download (19kB) |
|
|
PDF (Supplementary Material 3)
Supplemental Material
Download (668kB) | Preview |
|
![]() |
Microsoft Word (.docx) (Supplementary Material 4)
Supplemental Material
Download (14kB) |
|
![]() |
Microsoft Word (.docx) (Supplementary Material 5)
Supplemental Material
Download (16kB) |
|
![]() |
Microsoft Word (.docx) (Supplementary Material 6)
Supplemental Material
Download (15kB) |
|
![]() |
Microsoft Word (.docx) (Supplementary Material 7)
Supplemental Material
Download (156kB) |
|
![]() |
Microsoft Word (.docx) (Supplementary Material 8)
Supplemental Material
Download (16kB) |
Abstract
BACKGROUND: Though tuberculosis (TB)-related stigma is a recognized barrier to care, interventions are lacking, and gaps remain in understanding the drivers and experiences of TB-related stigma. We undertook community-based mixed methods stigma assessments to inform stigma intervention design. METHODS: We adapted the Stop TB Partnership stigma assessment tool and trained three peer research associates (PRAs; two TB survivors, one community health worker) to conduct surveys with people with TB (PWTB, n = 93) and caregivers of children with TB (n = 24) at peri-urban and rural clinic sites in Khayelitsha, Western Cape, and Hammanskraal, Gauteng Province, South Africa. We descriptively analyzed responses for each stigma experience (anticipated, internal, and enacted), calculated stigma scores, and undertook generalized linear regression analysis. We conducted 25 in-depth interviews with PWTB (n = 21) and caregivers of children with TB (n = 4). Using inductive thematic analysis, we performed open coding to identify emergent themes, and selective coding to identify relevant quotes. Themes were organized using the Constraints, Actions, Risks, and Desires (CARD) framework. RESULTS: Surveys revealed almost all PWTB (89/93, 96%) experienced some form of anticipated, internal, and/or enacted stigma, which affected engagement throughout the care cascade. Participants in the rural setting (compared to peri-urban) reported higher anticipated, internal, and enacted stigma (β-coefficient 0.72, 0.71, 0.74). Interview participants described how stigma experiences, including HIV intersectional stigma, act individually and together as key constraints to impede care, leading to decisions not to disclose a TB diagnosis, isolation, and exclusion. Stigma resilience arose through the understanding that TB can affect anyone and should not diminish self-worth. Risks of stigma, driven by fears related to disease severity and infectiousness, led to care disengagement and impaired psychological well-being. Participants desired counselling, identifying a specific role for TB survivors as peer counselors, and community education. CONCLUSIONS: Stigma is highly prevalent and negatively impacts TB care and the well-being of PWTB, warranting its assessment as a primary outcome rather than an intermediary contributor to poor outcomes. Multi-component, multi-level stigma interventions are needed, including counseling for PWTB and education for health workers and communities. Such interventions must incorporate contextual differences based on gender or setting, and use survivor-guided messaging to foster stigma resilience. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s44263-024-00070-5.
Item Type: | Article | |||||||||||||||||||||||||||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Additional Information: | © The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. | |||||||||||||||||||||||||||||||||||||||
Keywords: | Cascade of care, Community-engaged research, Intervention, Stigma, Tuberculosis | |||||||||||||||||||||||||||||||||||||||
SGUL Research Institute / Research Centre: | Academic Structure > REF 2021 user group | |||||||||||||||||||||||||||||||||||||||
Journal or Publication Title: | BMC Glob Public Health | |||||||||||||||||||||||||||||||||||||||
ISSN: | 2731-913X | |||||||||||||||||||||||||||||||||||||||
Language: | eng | |||||||||||||||||||||||||||||||||||||||
Dates: |
|
|||||||||||||||||||||||||||||||||||||||
Publisher License: | Creative Commons: Attribution 4.0 | |||||||||||||||||||||||||||||||||||||||
Projects: |
|
|||||||||||||||||||||||||||||||||||||||
PubMed ID: | 38919729 | |||||||||||||||||||||||||||||||||||||||
Go to PubMed abstract | ||||||||||||||||||||||||||||||||||||||||
URI: | https://openaccess.sgul.ac.uk/id/eprint/116640 | |||||||||||||||||||||||||||||||||||||||
Publisher's version: | https://doi.org/10.1186/s44263-024-00070-5 |
Statistics
Actions (login required)
![]() |
Edit Item |