Stigma matters in ending tuberculosis: Nationwide survey of stigma in Ethiopia

BACKGROUND: Tuberculosis (TB) affects, and claims the lives of, millions every year. Despite efforts to find and treat TB, about four million cases were missed globally in 2017. Barriers to accessing health care, inadequate health-seeking behavior of the community, poor socioeconomic conditions, and stigma are major determinants of this gap. Unfortunately, TB-related stigma remains unexplored in Ethiopia. METHODS: This mixed methods survey was conducted using multistage cluster sampling to identify 32 districts and 8 sub-cities, from which 40 health centers were randomly selected. Twenty-one TB patients and 21 family members were enrolled from each health center, and 11 household members from each community in the catchment population. RESULTS: A total of 3463 participants (844 TB patients, 836 from their families, and 1783 from the general population) were enrolled for the study. The mean age and standard deviation were 34.3 ± 12.9 years for both sexes (34.9 ± 13.2 for men and 33.8 ± 12.5 for women). Fifty percent of the study participants were women; 32.1% were illiterate; and 19.8% came from the lowest wealth quintile. The mean stigma score was 18.6 for the general population, 20.5 for families, and 21.3 for TB patients. The general population of Addis Ababa (AOR: 0.1 [95% CI: 0.06–0.17]), those educated above secondary school (AOR: 0.58 [95% CI: 0.39–0.87]), and those with a high score for knowledge about TB (AOR: 0.62 [95% CI: 0.49–0.78]) had low stigma scores. Families of TB patients who attended above secondary school (AOR: 0.37 [95% CI: 0.23–0.61]) had low stigma scores. TB patients educated above secondary school (AOR: 0.61 [95% CI: 0.38–0.97]) had lower stigma scores, while those in the first (AOR: 1.93: 95% CI 1.05–3.57) and third quintiles (AOR: 1.81: 95% CI: 1.08–3.05) had stigma scores twice as high as those in the highest quintile. Fear of job loss (32.5%), isolation (15.3%), and feeling avoided (9.3%) affected disclosure about TB. CONCLUSIONS: More than a third of Ethiopians have high scores for TB-related stigma, which were associated with educational status, poverty, and lack of awareness about TB. Stigma matters in TB prevention, care, and treatment and warrants stigma reduction interventions.