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Table 2 Research on TB and stigma in LMICs, 2008–2017

From: A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries

Study (First author, year [ref.]) Location Sampling characteristics Sample size Study design Type of stigma assessed Description of stigma association (strength, significance) Significant mediators/moderators
Atre, 2011 [83] India Participants without TB in the general population of Western Maharashtra, India, were interviewed from six randomly selected villages 160 Cross-sectional EMIC interviews with same-sex and cross-sex vignettes depicting a person with typical features of TB Non-disclosure of disease was associated with fear of losing social status, marital problems, and hurtful behavior by the community Mod: Among females, heredity was perceived as a cause for stigmatization; males reported marital problems in response to the vignette; men perceived greater spousal support than women, who viewed support as more conditional
Chang, 2014 [175] Global Descriptive studies 83 studies Systematic review Influence of TB stigma on knowledge, attitudes, and responses to TB Negative attitude and misperceptions of causes of TB were associated with stigma as was TB’s association with HIV
Illness disclosure and help-seeking were influenced by stigma
Mod: Cultural variations were found for TB-related stigma across countries
Chikovore, 2014 [176] Malawi 8 focus group discussions with general community members; 2 with health workers
Individual interviews with TB patients and chronic coughers
34 Qualitative Perceived stigma A compound stigma emerged related to beliefs that cough was a ‘serious’ illness and that a concern among men was failure to perform role expectations, which resulted in mental distress None
Coreil, 2010 [66] Haiti Community residents recruited from community locations, TB patients, and healthcare providers recruited from healthcare centers 101 Qualitative EMIC, internal stigma, external actions Stigma was associated with poverty, poor nutrition, and HIV infection None
Courtwright, 2010 Global Studies that measured or characterized TB stigma, measured impact of TB stigma on outcomes, or described interventions were included 69 studies Systematic review Perceived, internalized, experienced stigma Fear of infection was most common cause of stigma; TB stigma associated with adverse socioeconomic outcomes; TB stigma is perceived to be associated with adverse treatment-seeking outcomes (diagnostic delay and non-compliance) Mod: Socioeconomic consequences of TB stigma are more acute among women
Cramm, 2011 [177] South Africa Area-stratified sampling of households in suburban South Africa
One adult of each household randomly chosen to complete survey
1020 Cross-sectional Modified AIDS-related stigma scale for TB including domains of social identity, blame, shame, avoidance, social sanction Participants who had stigmatizing views of TB had preferences for special TB queues, treatment provision at clinics (vs. TB hospitals or at home) and held negative views of information provision on TB at work or school and disability grants for TB patients None
Cremers, 2015, 2016 [178, 179] Zambia TB patients were interviewed in a local clinic and surrounding areas 300 Mixed methods Anticipated, internalized, experienced Stigma was precipitated by perceptions on co-infection with HIV, perceived immoral behavior, perceived incurability, and traditional beliefs about causes of TB
Outcomes of stigma included low self-esteem, discrimination, social exclusion, decreased quality of life, and poor treatment adherence/compliance
Mod: Women reported more problems associated with stigma compared to men
Daftary, 2014 [79] South Africa Focus groups were conducted with patients receiving treatment for MDR-TB or XDR-TB 23 Qualitative Not specified Stigma was associated with poor adherence to MDR-TB and XDR-TB treatment adherence None
Dhuria, 2009 [84] India TB patients were recruited from two DOTS centers in an urban area; controls were recruited from the community and matched by age, gender, and SES 180 Case–control Not specified Social domain of the quality of life scale differed significantly between cases (TB patients) and controls (non-TB patients) None
Dodor, 2009 [70] Ghana Interviews and focus groups were held with community members and TB patients 100 interviews; 22 focus groups Qualitative Not specified Five health professional practices were associated with stigmatization of patients, including exclusionary practices, health professional behaviors, discourse around TB, food safety/hygiene, prohibition of burial rites. Stigma may be associated with poor treatment-seeking and diagnostic delay, and poor adherence None
Finnie, 2011 [150] Sub-Saharan Africa Studies were included that collected data on patient and health care system delay in diagnosing and treating TB among patients 15 and older in sub-Saharan Africa 20 studies Systematic review Not specified Stigma of being perceived to have HIV was associated with poor TB treatment seeking None
Hassard, 2017 [76] Uganda Patients in continuation phase of treatment for Pulmonary TB were included using systematic sampling in TB clinics 201 Cross-sectional Not specified 39% of TB patients did not want anyone to know their status
Perceptions of being rejected by the community were associated with non-adherence to TB treatment
None
Hayes-Larson, 2017 [87] Lesotho Baseline data from a mixed methods cluster randomized trial of HIV-TB co-infected patients 371 Cross-sectional Not specified Greater TB stigma associated with depression
Greater external HIV and TB stigma associated with hazardous/harmful alcohol use
None
Isaakidis, 2013 [81] India Patients receiving treatment for MDR-TB and HIV purposively selected to represent range of gender, SES, and treatment phase 12 Qualitative Not specified Patients considered both TB and HIV to be stigmatizing but HIV more so
Stigma associated with not disclosing disease status, lack of mobilization of support systems, and reduced treatment seeking and adherence
None
Juniarti, 2011 [180] Global Included qualitative and mixed methods studies focusing on stigma and TB 30 studies Systematic review Not specified Three themes were identified across studies – ‘shame’ of having TB (perceived as a ‘dirty’ disease), ‘isolation’ (due to social exclusion and withdrawal from social contact), and ‘fear’ None
Kipp, 2011 [72] Thailand TB patients who started treatment within the past month were recruited from hospital-based TB clinics; a convenience sample of community members without TB was also recruited 780 Cross-sectional Perceived TB stigma, experienced TB stigma, perceived HIV stigma Co-infection with HIV, HIV stigma, and lower level of education were associated with greater TB stigma among patients None
Kipp, 2011 [77] Thailand TB patients who started treatment within the past month were recruited from hospital-based TB clinics 459 Cohort Experienced and perceived TB and HIV stigma Stigma had a minimal association with adherence to TB treatment overall Mod: Among women and patients with HIV co-infection, experienced stigma was associated with worse adherence
Kumwenda, 2016 [181] Malawi Community members, TB patients, and health workers participated in focus group discussions and in-depth interviews 114 Qualitative Not specified Stigma was associated with fear over confidentiality of diagnosis, delays in health seeking Mod: Gender
Kurspahić-Mujčić, 2013 [63] Bosnia and Herzegovina TB patients were recruited from a university TB clinic in Sarajevo 300 Cohort Perceived TB stigma 26% of patients reported that TB was a stigmatizing disease
The average time interval from first TB symptoms to first healthcare visit was 6.41 weeks among those who perceived TB to be stigmatizing compared to 4.99 weeks among those who did not perceive TB to be stigmatizing
Mod: Females were more likely to report TB was stigmatizing than males
Mavhu, 2010 [182] Zimbabwe Participants from a parent study who had a chronic cough and had not previously reported their symptoms to the study team or received other healthcare were recruited for in-depth interviews and focus groups 40 Qualitative Not specified Participants reported an expectation of being mistreated and stigmatization by clinic staff
Perceived association between TB and HIV was associated with delayed treatment seeking
None
Méda, 2014 [73] Burkina Faso TB and HIV patients were recruited from health centers and NGOs 1030 Cross-sectional Not specified Stigma was associated with treatment adherence None
Miller, 2017 [183] Tanzania Focus group discussions were held with TB patients and their household members 48 Qualitative Not specified Domains of stigma described by participants included fear, social isolation, loss of social status, and discrimination perpetrated by healthcare providers
Stigma was described as a barrier to care resulting in treatment-seeking delay
Mod: Women reported stigma associated with perceptions of promiscuity and rejection by their partners; men reported ‘survival challenges’
O’Donnell, 2014 [82] South Africa MDR-TB patients were enrolled consecutively on initiation of treatment at a public TB hospital 104 Cohort Not specified Knowledge, attitudes, and beliefs, including HIV stigma, were not associated with TB treatment adherence 6 months later None
Sima, 2017 [85] Ethiopia Systematic sampling of households in randomly selected villages in a pastoralist and a neighboring sedentary community 584 Mixed methods Perceived TB stigma Participants reported that TB is less stigmatized than HIV
Pastoralists were more likely to have stigma towards TB patients, more likely to feel ashamed if they had TB, and more likely to reject someone with TB in their community than those from sedentary community
None
Skinner, 2016, 2016 [184, 185] South Africa TB patients were recruited from a parent study, including those who had remained treatment adherent and those who were initially lost to follow-up 41 Qualitative Not specified Stigma and the connection between TB and HIV were associated with not starting treatment and loss to follow-up
Greater stigma was associated with MDR-TB; the creation of a discrete TB service for patients reduced stigma; having someone close to them who was on TB treatment also reduced stigma; some participants expressed anger and also resistance to the stigma
None
Somma, 2008 [65] Bangladesh, India, Malawi, Colombia Interviews were conducted with TB patients at clinics within each site 427 Cross-sectional Interviews were conducted with the EMIC Stigma index varied across countries and was highest in India; stigma was associated with marital prospects among women in India and Malawi None
Sommerland, 2017 [186] South Africa Representative sample of healthcare workers was recruited from 6 hospitals 804 Cross-sectional Perceived stigma Significant inverse relationship between perceived stigma/negative attitudes of colleagues and the use of occupational healthcare units for TB screening None
Xu, 2017 [69] China Multi-stage randomized sample of TB patients receiving treatment at home 342 Cross-sectional Experienced stigma Experienced stigma was significantly associated with psychological distress None
Yan, 2017 [75] China Multi-stage randomized sample of TB patients from TB dispensaries in three counties 1342 Cross-sectional Experienced stigma TB-related stigma and depression were common and both were associated with poor treatment adherence None
  1. DOTS directly observed treatment, short-course, EMIC Explanatory Model Interview Catalogue, MDR-TB multi-drug resistant tuberculosis, NGO non-governmental organization, SES socioeconomic status, XDR-TB extensively drug resistant tuberculosis