Interventions pathways to reduce tuberculosis-related stigma: a literature review and conceptual framework | Infectious Diseases of Poverty

The search yielded 14,244 articles with 15 further articles identified from other sources including gray literature. After removal of duplicate articles, 10,954 were screened, 54 of which met the study inclusion criteria. Following the full-text eligibility assessment, 43 further articles were excluded (Additional file 1). The remaining 11 articles were included for critical appraisal in the systematic review (Fig. 1).

Fig. 1

PRISMA flow diagram of study identification, screening, and inclusion in review. Other sources of articles refer to those identified through the Stop TB Partnership website, KNCV Tuberculosis foundation database, and the snowball method

Quality assessment

The median CCAT score for quality of studies was 24/40 (range 15–38) (Additional file 1). Three studies were classified as high quality [24,25,26]. The predominant reasons for lower quality scoring were lack of details relating to methods and study protocols including sampling frames and ethical approval.

Study characteristics

There was marked heterogeneity in the study characteristics in terms of study aims, designs, population and region/sites, and type of stigma measured (Table 1). The studies were conducted in low- (n = 1) [27]middle- (n= 9) [24,25,26, 28,29,30,31,32,33]and high-income (n= 1) countries [34]. Two studies were conducted in the same country (Peru) [30, 31], and these studies were linked with some overlap of study team members and co-authors. The studies were targeted at a variety of different populations including people with TB and MDR-TB and their households (n= 5), HCWs (n= 3), and the public (n= 3).

Table 1 Characteristics of TB-stigma intervention studies

Study population, aims and intervention

Six studies applied interventions targeted towards people with TB. Five of the studies aimed to improve TB treatment compliance and completion through psychosocial support interventions, which were TB clubs or support groups (n= 3) [28,29,30]nurse support (n= 1) [31]and household counseling (n= 1) [26]while one study focused on improving TB knowledge [33].

TB clubs involved group meetings of people diagnosed with TB to discuss their experiences and provide mutual support to encourage each other through their illness and treatment. Other studies initiated patient-centred home visits by HCWs to complement the TB clubs [30]provided individualized emotional support from community nurses who informed and educated people with TB and their households about TB [31]and implemented a household counseling intervention delivered by nurses and trained counselors [26]. All of the studies tailored towards people with TB captured stigma related to being diagnosed with TB. The assessment focused on measuring enacted and internalized stigma and, where possible, the influence of such stigma on TB treatment success rates. Two of the studies also involved family members of people with TB: one to evaluate stigma [26] and another to evaluate people with TB and their family members’ TB knowledge following delivery of educational videos while waiting at TB outpatient clinic appointments [33].

Two studies evaluated stigma among HCWs using workshops focused on distinct aspects of stigma [24, 34]. One delivered nationwide TB training workshops to educate HCWs on TB, stigma and human rights to improve knowledge on TB and reduce TB-stigma towards people with TB [34]. In another, there was a focus on healthcare workers who were themselves stigmatized by other HCWs [24]. This study measured external or secondary stigma, in which HCWs experience negative attitudes or rejection because of the care they have given to people with TB.

Three studies assessed anticipated TB-Stigma among the public: two in an adult population and one in an adolescent population. All the studies measured anticipated TB stigma using before-after intervention designs. Two studies applied health education programs in the community (mass information programs and health promotion at mass gatherings) [27, 32]. Another study delivered training to students and evaluated whether the training reduced their levels of anticipated TB stigma [25].

Stigma measurement tools

Eight studies used quantitative questionnaires to measure stigma (Table 2) [24,25,26,27,28, 32,33,34]. The format of the questionnaires to measure stigma varied widely including the number of questions asked (range 3–14 questions). Three of the questionnaires were adapted from tools that were not specific to any particular disease and had been previously validated but not among people with TB [28, 29, 34]. For example, Macq et al.adapted their questionnaire from the Boyd Ritsher Mental Illness stigma scale and pre-tested it 2 years before the intervention study to improve its internal validity [28]. One study piloted the tools in six different communities (four Zambian and two South African) with six different languages ​​(Nyanja, Bemba, Tonga, isiXhosa, Afrikaans and English) [26]. Four other studies piloted their questionnaires in a single population each [24, 25, 27, 28, 35].

Table 2 TB-stigma measurement tools

Most studies (n= 7) applied the tool before and after a stigma-reduction or related intervention with the time period between the first and second application varying from 4 weeks to 18 months [24,25,26, 28, 32,33,34]. One quantitative study did not evaluate stigma before the intervention [27]. The study was an evaluation of an extensive mass health education program that was implemented for 2–3 years in one case study area and compared to another control study area with a limited health education program.

Four studies used qualitative methods, such as focus group discussions, interviews and observation, to evaluate stigma [24, 29,30,31]. No studies used previously validated methods or tools to qualitatively evaluate stigma. However, the qualitative approaches focused less on measurement of stigma and more on exploring how people with TB attempted to combat the stigma perceived by themselves [29] or by other people [30]and how HCWs who work with people with TB struggled to deal with stigmatization from other HCWs [24].

Challenges, successes, and outcomes

Implementation and delivery challenges and process indicators such as fidelity, acceptability, and feasibility were infrequently measured or reported in the studies. One study caused a positive change to national practice with the production of a manual to expand the intervention to a wider population [28]. Three studies reported that a success of the intervention was that sustainable changes had been made within the study site communities [26, 29, 33]. However, there was no objective way to measure or verify these changes from the data presented within the study articles.

Four of the studies explicitly stated that their intervention was limited by geographical challenges including some populations not being reached by the intervention [25, 27, 28, 32]. This limited the external validity of the data. Three studies mentioned challenges concerning maintenance and sustainability of the programs, including identifying participants to take part in the intervention and motivating people to continue engaging with the intervention [30, 31, 34]. Another study mentioned that inviting all HCWs to participate in a workshop about TB was problematic because hospitals were busy and understaffed [24]. The intervention itself was also challenged by issues relating to professional rank, position, and social status of different HCWs, which was perceived as limiting open discussion about the optimal ways to address stigma between HCWs (Table 3).

Table 3 Pathways to impact of TB-stigma interventions

Pathways to impact of TB-stigma interventions

Synthesizing learning from the interventions and outcomes, we found distinct pathways to reduce stigma depending on the population targeted by the intervention. We created a novel conceptual framework to illustrate these pathways (Fig. 2).

Fig. 2
figure 2

Pathways to impact of TB-stigma interventions

Among people with TB, stigma is a negative effect of being ill with TB, diagnosed with TB, and being on TB treatment. Stigma towards people with TB can develop in three other populations: the public, TB-related HCWs, and other HCWs. The interventions for people with TB improved TB knowledge, reduced myth and misconception related to TB, increased confidence of people with TB, and thereby reduced internalized stigma experienced by people with TB [28,29,30,31, 33]. These effects directly supported people with TB to comply with and complete TB treatment. Another study showed that, although household counseling was not specifically designed to, or found to, reduce TB-Stigma [26], health counselors can help households manage the consequence of TB-Stigma. The main challenge in providing household counselling, particularly in communities with high levels of TB stigma, is that the visitors themselves may trigger anticipated, internalised, or enacted stigma.

Training to TB HCWs improved the HCWs’ knowledge, attitude, and practice towards people with TB [34], which may contribute to improved TB care. Conversely, our review found that TB-related HCWs were often stigmatized by other HCWs [24]. Training HCWs who care for people with TB to educate other HCWs is likely to support dissemination of knowledge and accurate information about TB-Stigma in their workplace. Although the training failed to reduce external or secondary stigma, there was a potential spill over effect that TB-related HCWs could have used the campaign materials to educate people living in their neighbourhood.

Interventions targeted towards the general public had positive impacts on knowledge, attitudes and practice related to TB as measured by knowledge, attitude, and practice (KAP) and stigma scores [25, 27, 32]. Mass TB education to the public was expected to increase TB knowledge and remove TB misconceptions which could result in improved community attitudes and reduced stigma towards people with TB. However, the evidence found in this review suggested that misconceptions about TB persisted, even worsened, if health education through pamphlets or posters were too short and failed to convey accurate public health messages [32].

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