Hayward Sally E, Vanqa Nosivuyile, Makanda Goodman, Tisile Phumeza, Ngwatyu Luthando, Foster Isabel, Mcinziba Abenathi A, Biewer Amanda, Mbuyamba Rachel, Galloway Michelle, Bunyula Siyavuya, van der Westhuizen Helene-Mari, Friedland Jon S, Medina-Marino Andrew, Viljoen Lario, Schoeman Ingrid, Hoddinott Graeme, Nathavitharana Ruvandhi R
Institute for Infection and Immunity, St George's, University of London, London, UK.
TB Proof, Cape Town, South Africa.
BMC Glob Public Health. 2024;2(1):55. doi: 10.1186/s44263-024-00084-z. Epub 2024 Aug 15.
Anticipated, internal, and enacted stigma are major barriers to tuberculosis (TB) care engagement and directly impact patient well-being. Unfortunately, targeted stigma interventions are lacking. We aimed to co-develop a person-centred stigma intervention with TB-affected community members and health workers in South Africa.
Using a community-based participatory research approach, we conducted ten group discussions with people diagnosed with TB (past or present), caregivers, and health workers (total = 87) in Khayelitsha, Cape Town. Group discussions were facilitated by TB survivors. Discussion guides explored experiences and drivers of stigma and used human-centred design principles to co-develop solutions. Recordings were transcribed, coded, thematically analysed, and then further interpreted using the socio-ecological model and behaviour change wheel framework.
Intervention components across socio-ecological levels shared common functions linked to effective behaviour change, namely education, training, enablement, persuasion, modelling, and environmental restructuring. At the individual level, participants recommended counselling to improve TB knowledge and provide ongoing support. TB survivors can guide messaging to nurture stigma resilience by highlighting that TB can affect anyone and is curable, and provide lived experiences of TB to decrease internal and anticipated stigma. At the interpersonal level, support clubs and family-centred counselling were suggested to dispel TB-related myths and foster support. At the institutional level, health worker stigma reduction training informed by TB survivor perspectives was recommended to decrease enacted stigma. Participants discussed how integration of TB/HIV care services may exacerbate TB/HIV intersectional stigma and ideas for restructured service delivery models were suggested. At the community level, participants recommended awareness-raising events led by TB survivors, including TB information in school curricula. At the policy level, solutions focused on reducing the visibility generated by a TB diagnosis and resultant stigma in health facilities and shifting tasks to community health workers.
Decreasing TB stigma requires a multi-level approach. Co-developing a person-centred intervention with affected communities is feasible and generates stigma intervention components that are directed and implementable. Such community-led multi-level intervention components should be prioritised by TB programs, including integrated TB/HIV care services.
The online version contains supplementary material available at 10.1186/s44263-024-00084-z.
预期污名、内在污名和表现性污名是结核病（TB）治疗参与的主要障碍，直接影响患者的幸福感。不幸的是，缺乏针对性的污名干预措施。我们旨在与南非受结核病影响的社区成员和卫生工作者共同开发一种以患者为中心的污名干预措施。
采用基于社区的参与性研究方法，我们在开普敦的凯伊利沙与结核病确诊患者（既往或当前）、护理人员和卫生工作者（共87人）进行了10次小组讨论。小组讨论由结核病幸存者主持。讨论指南探讨了污名的经历和驱动因素，并运用以人为本的设计原则共同制定解决方案。对录音进行转录、编码、主题分析，然后使用社会生态模型和行为改变轮框架进行进一步解读。
社会生态层面的干预组成部分具有与有效行为改变相关的共同功能，即教育、培训、赋能、劝服、示范和环境重构。在个体层面，参与者建议提供咨询以提高结核病知识并提供持续支持。结核病幸存者可以通过强调结核病可影响任何人且可治愈来引导信息传递，以培养抗污名能力，并分享结核病的亲身经历以减少内在污名和预期污名。在人际层面，建议设立支持俱乐部和以家庭为中心的咨询服务，以消除与结核病相关的误解并促进支持。在机构层面，建议开展基于结核病幸存者观点的卫生工作者减少污名培训，以减少表现性污名。参与者讨论了结核病/艾滋病护理服务整合可能如何加剧结核病/艾滋病交叉污名，并提出了重组服务提供模式的想法。在社区层面，参与者建议由结核病幸存者牵头开展提高认识活动，包括在学校课程中纳入结核病信息。在政策层面，解决方案侧重于减少结核病诊断在医疗机构中产生的可见度和由此导致的污名，并将任务转移给社区卫生工作者。
减少结核病污名需要采取多层次方法。与受影响社区共同开发以患者为中心的干预措施是可行的，并能产生具有针对性且可实施性的污名干预组成部分。此类由社区主导的多层次干预组成部分应由结核病防治项目优先考虑，包括结核病/艾滋病综合护理服务。
在线版本包含可在10.1186/s44263-024-00084-z获取的补充材料。
