■尽管与结核病(TB)相关的污名是公认的护理障碍,缺乏干预措施,在理解结核病相关污名的驱动因素和经验方面仍然存在差距。我们进行了基于社区的混合方法的污名评估,以指导污名干预设计。
■我们采用了阻止结核病伙伴关系污名评估工具,并培训了三名同行研究人员(PRA;两名结核病幸存者,一名社区卫生工作者)与结核病患者(PWTB,n=93)和在Khayelitsha的城市和农村诊所地点的结核病儿童看护人(n=24),西开普,还有Hammanskraal,豪登省,南非。我们描述性地分析了每种污名经历的反应(预期,内部,并颁布),计算的污名分数,并进行了广义线性回归分析。我们对PWTB(n=21)和结核病儿童的看护人(n=4)进行了25次深入访谈。使用归纳主题分析,我们进行了开放式编码来识别紧急主题,和选择性编码来识别相关报价。主题是使用约束组织的,行动,风险,和欲望(CARD)框架。
■调查显示,几乎所有PWTB(89/93,96%)都经历了某种形式的预期,内部,和/或颁布的耻辱,这影响了整个护理级联的参与度。农村地区的参与者(与城市周边地区相比)报告的预期更高,内部,并制定了污名(β系数0.72、0.71、0.74)。访谈参与者描述了污名体验,包括艾滋病毒交叉的污名,单独和共同采取行动,作为阻碍护理的关键制约因素,导致决定不披露结核病诊断,隔离,和排斥。由于理解结核病可以影响任何人,并且不应减少自我价值,因此产生了耻辱复原力。耻辱的风险,受与疾病严重程度和传染性相关的恐惧驱动,导致护理脱离和心理健康受损。参与者需要咨询,确定结核病幸存者作为同伴顾问的具体角色,和社区教育。
■污名化非常普遍,对结核病护理和PWTB的福祉产生负面影响,保证将其评估作为主要结果,而不是导致不良结果的中介因素。多组分,需要多层次的污名干预,包括对PWTB的咨询以及对卫生工作者和社区的教育。此类干预措施必须纳入基于性别或背景的背景差异,并使用幸存者引导的消息传递来培养污名抵御能力。
■在线版本包含10.1186/s44263-024-00070-5提供的补充材料。
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: The online version contains supplementary material available at 10.1186/s44263-024-00070-5.