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

Abstract

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.

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

“…This study was part of the Characterising and Addressing the Psychosocial Impact of Tuberculosis in Indonesia (CAPITA) research programme, conducted from February to November 2022 [ 27 ]. The study findings will feed into the associated Medical Research Council Public Health Intervention Development-funded (MR/Y503216/1) “TB-CAPS” study to co-design and develop a community-based, peer-led psychosocial support intervention to combat TB-Stigma in Indonesia, which commences in July 2023.…”

“…We used the Indonesian-validated version of the Patient Health Questionnaire-9 (PHQ-9) [43], with a Cronbach's alpha of 0.837 [38], to assess the participants' symptoms of depression according to the pre-existing PHQ-9 categories: no depression (score of 0-4), mild (5-9), moderate (10)(11)(12)(13)(14), moderately severe (15)(16)(17)(18)(19), and severe (20)(21)(22)(23)(24)(25)(26)(27) [41]. The PHQ also allows the interpretation of "major depressive disorder" (MDD) and "other depressive disorder".…”