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

Ahmad Fuady,Agus Sugiharto,Helmi Suryani Nasution,Agus Fitriangga,Tom Wingfield,Saidah Rauf,Muchtaruddin Mansyur,Bustanul Arifin,Ferdiana Yunita,Finny Fitry Yani,I Wayan Gede Artawan Eka Putra

doi:10.12688/wellcomeopenres.17645.1

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.

Highlights

The global community continues to face a high burden of tuberculosis (TB) with a current slow decline of TB incidence and mortality[1]
CAPITA will characterise the enacted stigma which are directly experienced by people with TB, and self-stigma felt by people with TB, secondary stigma faced by their family members, and structural stigma related to the law and policy
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

Summary

Introduction

The global community continues to face a high burden of tuberculosis (TB) with a current slow decline of TB incidence and mortality[1] This scenario has been aggravated by the coronavirus disease 2019 (COVID-19) pandemic, which continues to negatively impact on the provision of essential TB services[2,3]. They may receive discrimination in the workplace such as unfair dismissal (sometimes because of unavoidable periods of absence), limited opportunity to advance training and promotion, and avoidance by management and co-workers[11,12] Such stigmatisation and discrimination in workplaces can compound the psychosocial impact of TB including fear of, or realisation of, social isolation and/or rejection. The quantitative data will be followed by in-depth interview to TB-related stakeholders

Methods

Results

Conclusion