Citation:
Craig, G., Meershoek, A., Zwerling, A., Daftary, A., Citro, B., Smyth, C., ... & Nair, T. (2018). TB STIGMA–MEASUREMENT GUIDANCE.

Summary

Published August 2018.
Chapter 1 introduces readers to stigma theory and some basic definitions of types of stigma. Chapter 2 (methodology) offers an overview of the scientific and operational considerations for matching your stigma measurement method to your question. Chapter 3 teaches formative qualitative research techniques to and out why the TB stigma takes a particular form, where the stigma comes from, and how stigma operates in your setting. Chapter 4 focuses on the measurement of TB stigma at the community level. This chapter details special considerations for embedding TB stigma measures in household surveys (e.g., scale length), and in settings with concentrated vs. generalized HIV epidemics. Chapter 5 focuses on measurement of TB discriminatory attitudes and behaviors in institutions such as prisons, schools, and health facilities, and has a special focus on measuring enacted TB stigma (discriminatory behaviors) through observational methods. The TB stigma literature has focused more on discrimination and disparagement of individual TB patients and less on the structural forms of discrimination. Chapter 6 covers the measurement of structural stigma. Chapter 7 teaches the basic principles of TB stigma measurement among TB patients. This is a relatively well-developed field with validated TB stigma scales robust in a variety of settings. Nevertheless, there are statistical and sampling challenges that require special consideration. Techniques for measuring secondary stigma are introduced in Chapter 8. This chapter describes the best practices for measuring stigma among healthcare workers (HCW), family members, and those in TB-affected industries. HCW stigma measurement is a high priority because HCW are often stigmatized for their vital TB care work, and yet may simultaneously mistreat TB patients. Chapter 9 explores how to measure TB stigma among socially networked populations who are already marginalized and socially excluded for other reasons. It outlines the efforts required to obtain reliable and unbiased estimates. State-of-the-art methods for capturing self-stigma, resilience, and self-efficacy are covered in Chapter 10. It is vital to measure the strengths and forms of 8resistance of people affected by TB. Documenting how some groups successfully detect stigma can inform interventions. Chapter 11 teaches how to deconstruct the language of TB programs to identify stigmatizing rhetoric and discourse. This chapter explores methods for policy analysis to pinpoint stigma embedded in norms and guidelines. Chapter 12 describes how to engage civil society and TB patients meaningfully in TB stigma measurement efforts. This text provides useful tips on participatory strategies that prevent further stigmatization and ensure dignity. Chapter 13 lays out the methodological foundations for incorporating the costs of TB stigma and social disadvantage into a cost-effectiveness analysis. Policy and strategy debates in TB control may have unintended consequences that should be anticipated. Chapter 14 involves intersectional and compound stigmas, such as the double stigma of TB/HIV. It is widely understood that TB stigma can be enmeshed with other kinds of social exclusions and marginalities. This creates analytical challenges that must be managed carefully to prevent bias and confusion. Chapter 15 describes how to study the impact of TB on complex behaviors, such as health-seeking, adherence, and mortality. This is a field of particular interest to TB programs seeking to understand the impact of TB stigma on their program. Chapter 16 gives concrete advice for those who want to develop and validate their own TB stigma scales. Chapter 17 gives step-by-step instructions for analyzing qualitative data from formative stigma research.

Related People

FounderSocial Science & Health Innovation for TuberculosisAssociate ProfessorSchool of Global Health, Dahdaleh Institute of Global Health ResearchYork UniversityCAPRISA Centre for the AIDS Programme of Research in South Africa

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