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.

The development of the national tuberculosis research priority in Indonesia: A comprehensive mixed-method approach.

Ranked second in global tuberculosis (TB) incidence, Indonesia has developed a National Strategy for TB Prevention and Control 2020-2024 to accelerate the TB elimination program. Research and innovation are key pillars to support the program and need to be prioritised. This study aimed to develop updated national TB research priorities in Indonesia. This study was a mixed-methods study consisting of an open survey, a published literature survey, and Delphi survey. The open survey invited all related TB stakeholders to answer (a) the main barriers of the TB program and (b) the need for studies to support TB elimination. The published literature survey retrieved scientific articles published in national and international journals between 2015 and 2020 to identify gaps between published research and the current national strategy for TB control. The online survey and literature survey informed a panel of TB experts in a two-phase Delphi Survey to select the top 10 priority research topics. We identified 322 articles and analysed 1143 open survey responses. Through two-phases Delphi surveys, top ten research categories were listed: early TB detection; diagnosis and treatment of DR-TB; contact investigation; case detection and treatment of child TB; TB preventive therapy; government policy; laboratory for drug-sensitive- and drug-resistant-TB diagnosis; treatment adherence; diagnostic tool development; and community empowerment. This study also found the gap between stakeholders' interests and the importance of translating research into policy and practice. TB research priorities have been identified through the involvement of various stakeholders. The combination of an online survey, a published literature survey, and a Delphi survey was a rigorous methodology and was fit to build a systematic consensus about the priority of TB research.

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.