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