Johnson L S, Anthony M G, Purdy C, Luke V, van Deventer H, van Niekerk M, Viljoen L, van der Zalm M M
Desmond Tutu TB Centre, Stellenbosch University, South Africa.
Program for Public Health, Northwestern University, USA.
IJTLD Open. 2025 Aug 13;2(8):443-449. doi: 10.5588/ijtldopen.25.0293. eCollection 2025 Aug.
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.
与结核病相关的耻辱感通常源于对结核感染的恐惧、社会群体之间的权力动态，以及结核病与社会不良特征的关联。
本研究在南非一项前瞻性观察性结核病诊断队列研究“乌莫亚”中进行。在入组16至24周后，对0至9岁疑似肺结核（PTB）儿童的照料者进行了“终止结核病耻辱感”问卷调查和基于活动的访谈。
共有70名患有PTB儿童（中位年龄：2岁）的64名照料者完成了问卷。大多数儿童（56%）家中有已知的结核病接触者。问卷显示，预期的耻辱感是一个普遍担忧的问题，担心人们对他们的孩子说三道四（16.7%），或者担心孩子因结核病诊断而感情受到伤害（16.7%）。照料者所感知的儿童内化耻辱感是最不被认可的耻辱领域。总体而言，照料者对内化耻辱感的认知并未延误治疗。其中12名照料者也接受了访谈，访谈揭示了预期耻辱感和内化耻辱感的主题，以及与艾滋病毒耻辱感的比较。
加深我们对耻辱感的理解对于改善受结核病影响的幼儿及其家庭的结局和经历至关重要。
