Stigma, depression, quality of life, and the need for psychosocial support among people with tuberculosis in Indonesia: A multi-site cross-sectional study.

Stigma towards people with tuberculosis (TB-Stigma) is associated with other psychosocial consequences of TB including mental illness and reduced quality of life (QoL). We evaluated TB-Stigma, depression, QoL, and the need for psychosocial support among adults with TB in Indonesia, a high TB burden country. In this primary health facility-based survey in seven provinces of Indonesia, from February to November 2022, we interviewed adults receiving (a) intensive phase treatment for drug-susceptible (DS) TB at public facilities, (b) treatment at private facilities, (c) those lost to follow up (LTFU) to treatment, and (d) those receiving TB retreatment. We used our previously validated Indonesian TB-Stigma Scale, Patient Health Questionnaire-9, and EQ-5D-5L to measure TB-Stigma, depression, and QoL. Additional questions assessed what psychosocial support was received or needed by participants. We recruited and interviewed 612 people, of whom 60.6% (96%CI 59.6-64.5%) experienced moderate TB-Stigma. The average TB-Stigma scores were 19.0 (SD 6.9; min-max 0-50; Form A-Patient Perspective) and 23.4 (SD 8.4, min-max 0-50; Form B-Community Perspective). The scores were higher among people receiving treatment at private facilities (adjusted B [aB] 2.48; 0.94-4.03), those LTFU (aB 2.86; 0.85-4.87), males (aB 1.73; 0.59-2.87), those losing or changing job due to TB (aB 2.09; 0.31-3.88) and those living in a rural area (aB 1.41; 0.19-2.63). Depression was identified in 41.5% (95% CI 37.7-45.3%) of participants. Experiencing TB-Stigma was associated with moderately severe to severe depression (adjusted odds ratio [aOR] 1.23; 1.15-1.32) and both stigma and depression were associated with lower QoL (aB -0.013; [-0.016]-[-0.010]). Informational (20.8%), emotional (25.9%) and instrumental (10.6%) support received from peers or peer-groups was limited, and unmet need for such support was high. There is a sizeable and intersecting burden of TB-Stigma and depression among adults with TB in Indonesia, which is associated with lower QoL. Participants reported a substantial unmet need for psychosocial support including peer-led mutual support groups. A community-based peer-led psychosocial support intervention is critical to defray the psychosocial impact of TB in Indonesia.

Stigma towards people with tuberculosis: a cross-cultural adaptation and validation of a scale in Indonesia.

INTRODUCTION: Tuberculosis (TB) remains a highly stigmatised disease that can cause or exacerbate mental health disorders. Despite increased awareness of the importance of reducing TB stigma, validated tools to measure TB stigma remain scarce. This study aimed to culturally adapt and validate the Van Rie TB Stigma Scale in Indonesia, a country with the second largest TB incidence worldwide. METHODS: We validated the scale in three phases: translation, cultural adaptation, and psychometric evaluation. We invited diverse experts to an interdisciplinary panel for the cross-cultural adaptation, then performed a psychometric evaluation of the scale: exploratory and confirmatory factor analyses, reliability analysis, and correlation analysis with Patient Health Questionnaire 9 [PHQ-9]. RESULTS: We culturally adapted the original scale's language and content during the translation and cultural adaptation phases. After psychometric evaluation with 401 participants in seven provinces of Indonesia, we removed two items. The new scale had two forms: (A) patient and (B) community perspective forms. Both forms had good internal consistency, with respective Cronbach's alpha values of 0.738 and 0.807. We identified three loading factors in Form A (disclosure, isolation, and guilty) and two loading factors in Form B (isolation and distancing). The scale showed correlation with PHQ-9 (Form A, rs = 0.347, p < 0.001; Form B, rs = 0). CONCLUSIONS: The culturally adapted Indonesian version of Van Rie's TB Stigma Scale is comprehensive, reliable, internally consistent, and valid. The scale is now ready for applied scale-up in research and practice to measure TB-stigma and evaluate the impact of TB-stigma reduction interventions in Indonesia.

Developing a tool to measure tuberculosis-related stigma in workplaces in Indonesia: An internal validation study.

Workers with tuberculosis (TB) are often stigmatized, negatively impacting their socioeconomic position, mental health, and TB treatment outcomes. There is a dearth of validated tools to assess stigma in the worker population. This study aimed to develop and validate a novel, culturally adapted tool to measure TB-related stigma among workers in Indonesia. We translated, adapted, applied, and internally validated Van Rie's TB-Stigma Scale to the worker population in varying sizes businesses (formal and informal business sectors) in Indonesia. Psychometric evaluation using exploratory and confirmatory factor analyses (EFA and CFA) was performed to check the tool's internal consistency and reliability. The translation and cultural adaptation phases resulted in a final 11-item tool. From 172 participant responses, the EFA found two loading factors relating to responses on isolation and exclusion from the workplace. The CFA confirmed that the developed model had moderate fit with R2 values for each item ranging from 0.37 to 0.84. The tool was reliable (Cronbach's alpha 0.869). This validated, consistent and reliable adapted tool is ready to use in larger scale evaluations of TB-related stigma amongst workers in formal and informal business sectors of Indonesia to develop strategies to eliminate TB-related stigma from the workplace.

Characterising and Addressing the Psychosocial Impact of Tuberculosis in Indonesia (CAPITA): A study protocol.

Background: Tuberculosis (TB)-related stigma remains a key barrier for people with TB to access and engage with TB services and can contribute to the development of mental illnesses. This study aims to characterise stigmatisation towards people with TB and its psychosocial impact in Indonesia. Methods: This study will apply a sequential mixed method in two main settings: TB services-based population (setting 1) and workplace-based population (setting 2). In setting 1, we will interview 770 adults with TB who undergo sensitive-drug TB treatment in seven provinces of Indonesia. The interview will use the validated TB Stigma Scale questionnaire, Patient Health Questionnaire-9, and EQ-5D-5L to assess stigma, mental illness, and quality of life. In Setting 2, we will deploy an online questionnaire to 640 adult employees in 12 public and private companies. The quantitative data will be followed by in-depth interview to TB-related stakeholders. Results: CAPITA will not only characterise the enacted stigma which are directly experienced by people with TB, but also self-stigma felt by people with TB, secondary stigma faced by their family members, and structural stigma related to the law and policy. The qualitative analyses will strengthen the quantitative findings to formulate the potential policy direction for zero TB stigma in health service facilities and workplaces. Involving all stakeholders, i.e., people with TB, healthcare workers, National Tuberculosis Program officers, The Ministry of Health Workforce, company managers, and employees, will enhance the policy formulation. The validated tool to measure TB-related stigma will also be promoted for scaling up to be implemented at the national level. Conclusions: To improve patient-centered TB control strategy policy, it is essential to characterise and address TB-related stigma and mental illness and explore the needs for psychosocial support for an effective intervention to mitigate the psychosocial impact of TB.