Community based peer-led TB screening intervention: an innovative approach to increase TB knowledge, presumptive case identification, and referral among sexual minority people in urban Bangladesh

The findings alluded to limited knowledge levels among the sexual minority people, including knowledge of TB symptoms, risk and routes of transmission, prevention and treatment strategies, etc. even though they all heard the word ‘TB’. Their lower awareness of TB was linked to individuals’ internalization of disease severity and sense of risk.

“As I do not smoke, I do not have any addiction, I am not worried about being infected with Jokkha’ (TB). Moreover, since no one is infected by Jokkha in my area, it would not affect me. I know it is a contagious (choyache) disease, it can spread via saliva or cough, but there is no possibility of me getting it since none of my friends have it!” (hijra, 55 years, Intervention site, IDI)

Their overall dearth of knowledge about TB hindered their ability to report preliminary TB symptoms (i.e., coughing for over two weeks) to the PEs or any TB service facility. In addition, low TB awareness among sexual minority people was linked to the limited dissemination of information by PEs. The IDIs indicated that available communicative materials (such as posters, billboards, handbills) were not friendly enough in ‘communicating’ with sexual minority people with limited institutional education, as these were deemed too verbose to extract essential TB-related information. At the same time, during interviews (IDIs), sexual minority people stated that they were not educated enough to read and understand or those are not in accordance with their preference.

Findings show that their low perceived severity was influenced by a lack of understanding of the serious implications of TB, thus cultivating a nonchalant attitude towards TB. For example, a 30-year old hijra participant narrated her experience where she was coughing for years, was diagnosed with TB, and started taking medications from a government facility in the capital city. After taking medicines for few weeks, she felt better and perceived that her condition ameliorated and symptoms subsided. She eventually stopped taking medicines. After a few months, she started coughing and feeling severe weakness again. However, this time her TB relapsed and was treated under a category 2 treatment regimen. On the other hand, we found another hijra participant with a history of incomplete TB treatment, and was not interested to visit healthcare facilities for further treatment despite experiencing prolonged cough. She attributed her unwillingness to the travel costs to visit the facility, busy schedule and existing workload. At the same time, there is also an opportunity cost associated with the time invested in travelling which could have been otherwise spent working and generating income.

Peer educators complained that some sexual minority participants were not interested in listening to educational information as their interest merely lied in collecting condoms and lubricants. This, coupled with their nonchalant attitudes towards health, led to their distracting and inattentive nature during these sessions.

“Some of them (enlisted program participants) listen carefully; some do not pay any attention! While some of them give me time, others just say “Give me the condoms, I will leave now!” Those who work at night (sex workers) are in a hurry, and they haunt us like a ghost, “Give it to me!” They (sex workers) come into the field with ‘full preparation’. Whereas, others who are not in a hurry give us time but still do not give us any importance, rather they are distracted!” (Peer educator, comparison site, KII)

“We work with such a population, it seems that after taking behavior change communication materials from us in the evening or, at night, they (participants) feel relieved (bechegelo)! As they are in a hurry, they will only listen to us for five minutes but are not willing to stay for any longer without any benefit!” (DIC manager, comparison site, KII)

There are also other TB screening options available besides the DIC-based approach. Key informants expressed that under NTP, community health workers conduct household and door-to-door visits for TB screening at free of cost among the general population, regardless of their endorsement to any type. Besides, DOTS centers also make announcements on TB symptoms and testing facilities using the portable microphone in residential areas, bus stations, railway stations, and watercraft terminals during day time. Sexual minority people were not readily available in these places and had their own places to live. During IDIs, the sexual minority people mentioned their preference to keep themselves separate from the general population and often do not venture and usually not congregating into these public spheres during day time due to self-perceived stigma, fear of identity disclosure, and social exclusion. This sphere also includes the ability to avail mainstream healthcare services. In terms of NTP’s initiatives, the majority of the sexual minority people claimed during the interviews that they had never come across NTP's door-to-door TB screening and DOTS center announcements. Apart from that, many of the sexual minority people were also found to be loitering in Mazars (religious shrine/tomb), parks and other areas at night which do not align with the NTP’s screening venues and times. Moreover, due to the sexual minority people’s anticipatory fear of perceived stigma, discrimination, perceived fear of breaches in confidentiality, etc., they are not willing to visit public health centers and uptake these services, thus inherently leaving them out of TB screening coverage. This claim was corroborated by the NGOs working with NTP who claimed that they rarely come across any sexual minority people in TB screening campaigns and test centers. This also demonstrated that the number of sexual minority people visiting at public hospitals is low. From our findings, it appeared that there was higher possibility of sexual minority people to be missed from NTP’s mass screening program.

In the present intervention design, MA only conducts verbal TB screening with the sexual minority people at DIC whenever they come for availing themselves of any service from the MA. The information about TB screening at the DICs is usually disseminated during the outreach sessions by the peer educators. Usually, the participants come for HIV testing services (HTS), management of sexually transmitted infections (STIs), general health services, or any other consultations with the MA. Whenever sexual minority people come for the DIC-based clinical sessions, they are entitled to verbal TB screening. However, some participants do not visit the DIC regularly, therefore some of them are not screened. As one of the MAs explained:

“I do not think, I have screened all the beneficiaries. Because, there are some beneficiaries, who come to DIC irregularly. Some beneficiaries receive services from field; they may not have any health problems, so they do not come to DIC. Or, they may have some problems, but they are ignoring it! These people are not coming to DIC for taking STI related services on a regular basis. Either they do not have any problem, or they are hiding it; and taking the medicine from outside [sources].” (MA, comparison site, KII)

There was provision for delivering information related to TB along with HIV and STI among enlisted sexual minority people, both in the group and one-to-one outreach sessions. However, since the programme is mostly focused on HIV and STI, they prioritize HIV and STI over TB when disseminating information. Most of the PEs and other DIC staff have been working on HIV and STI for many years, therefore they have designed their educational sessions to mandatorily accommodate HIV and STIs in the field. However, the same scenario is not applicable to the field for TB services. Since there is no obligation to disseminate information about TB in the field, many of them are less willing to do this in the field, thus leading to sparse discussions on the field. Many of them explained that they do not feel the same magnitude of ownership towards TB compared to HIV/STI. One of them mentioned that:

“Now, there are differences between, ‘when I am given some work” and ‘when I am just working because someone told me to do so’. When you will give your child to me for rearing, I will be affectionate only for a while. But I will love my own child endlessly. Till now, we do not own TB [as our work]. We were asked to deliver TB-related messages, but if we actually owned it, you would get many referral cases. We screened so many participants, but there is no TB positive participant!” (Outreach Supervisor, Comparison site, KII)

As a result, TB is rarely discussed in the field with the sexual minority people. One of the PEs mentioned that:

“About TB, we do not discuss regularly, we explain [about TB] occasionally (majhe moddhay). If we find any of the programme participants coughing, or, if anyone reports that he is suffering from cough, then we discuss TB. To tell the truth, we do not discuss TB every week; we discuss it once or twice a month. All the time, we work on HIV.” (Peer Educator, Intervention site, KII)

The current HIV prevention program followed monthly and quarterly target-based performance on specific indicators (i.e., HIV testing services, STI management, and distribution of condom, lubricant and BCC sessions) for ensuring and evaluating the programmatic achievements. As a result, they place primary emphasis on achieving the targets of the programme. The absence of a similar target for verbal TB screening, under performance assessment indicators, challenged verbal TB screening at DIC among enlisted sexual minority people, as this activity was not emphasized to the same extent.

Upon recruitment, PEs received extensive training under the HIV prevention program, which included a brief session on TB. Programme personnel also confirmed the paucity of specific capacity-building initiatives on TB, which was also echoed by DIC staff of different levels. We noted that, in total, twenty PEs were working at intervention and comparison DICs, and only five of them received focused training on TB organized by local NGOs working for primary healthcare and TB prevention in respective DIC catchment areas. Whereas, PEs received intermittent training on HIV and STI under the HIV prevention program. Repeated training and mandatory information discussion on HIV and STI helped the PEs to master the delivery of information dissemination sessions through constant regular practice. PEs reported that as they were not well trained and capacitated to talk about TB at outreach, they did not feel sufficiently confident to discuss TB. As one of the representatives expressed:

“From my experience, continuous capacity building at all levels is mandatory for running a service package, from peer educator to central level. The existing system lacks such initiative for the TB component. Although we have started working on TB-HIV co-infection, many of our staff do not have appropriate knowledge on TB which is a critical factor.” (Representative from NGO working on HIV prevention, KII)

“We are disseminating information on HIV from the very beginning. We are experienced/well (paka) aware of HIV, but the same cannot be said about TB! We have memorized all HIV information. But we become stuck (Bajhe), when it comes to TB! We did not get enough orientation (training) on TB, we only attended some sessions. But, the way we get hands-on training on HIV, and the HIV training manuals; to what extent are we working efficiently on HIV?” (Outreach supervisor, Comparison site, KII)

Generally, the DIC clinical sessions for STI, HTS and other health services are operated from 10 am to 4–5 pm, ranging from three to four weekdays per week. Hence, there are some sexual minority people who cannot visit clinics due to their job or other activities on a regular basis. Some of the sexual minority people have scheduled work during work days. So, they do not want to spend time coming to DIC, rather they want to invest that time in generating a sizeable income. Since their earning opportunity is limited relative to the mainstream population, when they calculate the opportunity cost of coming to DIC versus going for work, they select their work over visiting DIC. Some of them also mentioned that they are students. These people find it really difficult to visit DIC during work days for clinical services. Such preference of income over health leads to low TB screening, low TB awareness, lack of understanding on disease severity and low-risk perception. As one of the key-informants opined:

“Hijra collect cholla (money from the general public), so they do not want to visit the DIC during the day. They (hijra) are not interested in coming here even for an hour. This time could have been dedicated to earning money outside! Also, there are some garment workers who will not visit during the daytime. We can reach them in the evening or night, at the field, and distribute condoms and lubricants among them but they cannot come to us for clinical services in the daytime.” (Peer Educator, Intervention site, KII)

“Not all of us are unemployed. There are some students and job holders who are busy during the day time. I think it is difficult for them to come here (for the DIC clinic session). I am a student now; I am free now. This is why I am here (DIC). But when I will have classes or a job, I might not able to come regularly.” (MSW, 24 years, Intervention site, IDI)

All groups expressed favorable opinions towards the “community people” who are known as peer educators in the current programme as the frontline actors of community-based TB screening, as a non-community person would not be familiar with the culture of sexual minority people, their attitude and behavior, and how to convince, comfort and motivate them.

Sexual minority people generally opined that non-community people may lack the same empathy of a community actor. Moreover, there might be a language barrier as sexual minority people have their own set of dialects and terminologies. Moreover, time and resource investments are required to prepare a non-community actor to serve sexual minority people (i.e., orientation with community, field dynamics, language and culture). On the other hand, since community people are well-versed with the outreach modality, professional and sexual network and residence of the enlisted sexual minority people, engaging an existing peer educator would warrant less programmatic and capacity building efforts. As some of the participants mentioned:

“[Peer educators] can do it, because they know everyone, and everybody knows them. They have a [specific] field, they will work in those areas. If a new person is recruited, he will not know or recognize anyone. If anyone sees me [at roads], who will identify that I am a kothi? (Interviewer: No, no–no. Even I will not understand.) Then? You will not be able to recognize me! He (peer educator) called me here, as he knows about me. A [non-community] person will not be able to do that!” (MSW, 35 years, Comparison site, IDI).

“When a new staff joins, it takes time to train them and introduce them to the service modality approaches. It takes time to grasp the idea. But there are many peer educators working with us for a long time, since the beginning of Bandhu (implementing NGO)! It is better to engage the experienced staff, capacitate them and assign the work, than recruit new staff, I think!” (Representative from implementing NGO, KII).

In the current DIC modality, peer educators are essentially outreach-level service providers recruited from the sexual minority community. They are usually MSM and hijra by demographic and aged between 18–60 years. Given their familiarity with this community, they are considered the first line of communication and the bridge between the community and the DIC services. PEs are assigned to serve a specific number of sexual minority people in different locations. These participants are reached at least once every three months (one programmatic quarter) to provide services (i.e., distribution of condoms, lubricant and BCC materials, information sharing, and referral for STI symptoms/HTS/general health services) under target-based performance. The perceived reasons and benefits of engaging existing peer educators for community-based TB screening approaches are summarized in Table 2, which covers aspects of individual factors and peer health worker-related factors.

As mentioned earlier, we planned to involve the peer educators in the TB screening as part of their regular outreach activities at the field sites (spots/dera¹/ residence), using a verbal TB screening form. After screening each participant, a mark will be indicated next to their name. However, peer educators were encouraged to screen sexual minority people more than once if required, depending on the symptoms.

When interviewed, the sexual minority people were asked to reflect on the proposed TB screening process in the community. They emphasized the importance of ‘TB screening individually’ during IDIs to ensure privacy and confidentiality. Acknowledging their concern, it was planned to disseminate TB-related information in groups; yet conduct ‘one-to-one’ TB screening with consent at a ‘private’ place.

“Let’s say that I met you at majar (a Muslim shrine), and then you are asking me questions and suggesting something. What will happen, thousands of people will gather and notice us! I will feel uneasy then, and you cannot say everything in front of everyone. It would not be effective then.” (hijra, 50 years, Comparison site, IDI)

In the FGD, peer educators also agreed with the notion of confidentiality during TB screening and shared that they took verbal consent from sexual minority people before starting screening. They approved ‘individual TB screening’ for maintaining confidentiality and keeping the presumptive TB status undisclosed. A peer educator from the intervention site explained:

“First, I will take his permission, because if I suddenly start discussing, he (sexual minority) might react. ‘Brother! I will discuss Jokkha (TB) for two minutes with you. Are you interested?’ Then, he will either say yes or no. If he denies, I have no right to force him (...) I will try to convince him, “I am saying all these for your wellbeing. If you have Jokkha or, cough, please share it with me! I can help you., it [TB services] is free!” (Peer educator, intervention site, KII)

Key informants identified peer educators’ focused training on TB as a prerequisite for quality assurance of TB screening in the field, the correct identification of presumptive cases, and dissemination of accurate information among sexual minority people. All peer educators at the intervention site proposed participatory training sessions (i.e., role-play, interactive discussion, field-testing) considering their limited formal schooling. The inclusion of outreach supervisors in the training was also recommended for monitoring peer educators and ascertaining their effective engagement.

“For community-based TB screening, one requirement is, [peer educators’] knowledge on [TB] and conducting [TB screening]. We often engage peer educators at outreach sites, so formal education is not mandatory here (in this case). But, for dealing with TB [and] for improving their technical knowledge, we need to consider their educational status. Most of our hijra (transgender) peer educators have no formal education, and MSW peer educators studied up to grade three or four. If we train them (peer educators), then they can do (TB screening) with good coordination [and efficiently]”. (Program personnel working on HIV prevention activities, KII).

Considering the low educational status of the sexual minority community and upon recommendation from key informants, pictorial BCC materials (i.e., leaflets, flipcharts) were developed, which would be easy to follow and understand for any individual. Sexual minority people also perceived distributing BCC materials as a straightforward way for disseminating TB related information.

“With pictures and cartoons on paper, it is easy to understand. For example, a cartoon character, is coughing or sneezing, and how [TB] is spreading among other people. If it is explained with a picture, it will be better!” (MSW, 23 years, Intervention site, IDI).

“The leaflet is the best option as it is only one page. For example, the best approach is if a peer educator distributes a picture [of a person] with fever where it is written ‘coughs for more than two weeks’ in a larger font, explains the content and screens for TB.” (Medical assistant, Intervention site, KII).

Sexual minority people, specifically hijra, are reluctant to visit public health facilities, mainly out of fear, self-stigma and social exclusion. Their mistrust towards general population would fuel their reluctance to visit a mainstream healthcare facility. However, if they were informed about the process of TB screening and sensitized to visit the DOTS center, peer educators would be more easily able to facilitate TB screening. Key informants opined that support from influential members of the community, such as hijra guru, was crucial for accessing hijra. Most hijra were involved either with cholla (money collection from people on roads, transport and markets) or cooking at hotels/hostels as baburchi (cook). As sexual minority people maintain a strong network under their guru and abide by her advice, we planned to leverage this network/connection to access them in groups. Guru’s instruction to her disciples for attending scheduled TB orientation sessions was perceived as a feasible and acceptable approach to increasing access and sensitization among sexual minority people.

“Hijra have multiple involvements, collecting fees, cooking and other tasks! To save their time, when they gather in groups of 15-20, we try to visit them in those places on multiple occasions. We mainly communicated with hijra guru. Mostly, guru offered us to visit dera after we met with them. We visited the dera and that helped our work run smoothly.” (Program personnel, working on HIV prevention program, KII)

“Sexual minority people are inclined to mistrust general population. Hence, to motivate them, their leaders should be contacted, sensitized and counseled first. If the leaders convey that, ‘If anyone gives you proposal (for TB screening and) treatment, (please participate) you will be benefited from here, you will get a chance to know about your health. They are here to help you’. Then, hijra will agree, otherwise, they don’t!” (Representative from an NGO working under National TB Program, KII)

Several TB DOTS providers and NGOs work within the DIC catchment area. The key-informants recommended periodical sensitization/awareness building sessions for DOTS service providers. Such sessions would motivate the DOTS staff to cordially accept the sexual minority people. If the presumptive sexual minority cases visited the DOTS centre at last once and had at least one positive experience, they feel more confident to visit the facilities and convey their positive attitudes to their peers.

“They (sexual minority people) usually do not come to us [doctors/health facilities], so we never treat them! I have never seen this group, so we are not habituated with this issue. Organizational refresher training is arranged for service providers all the time. The staff can be counseled at training about the importance of treating and caring for them equally, free of any discrimination. Since stigma is prominent, it is important to sensitize both participants and service providers. General populations often pass comments about their dressing style, therefore healthcare providers need to be sensitized about their lifestyles!” (Public health researcher working at a research institution, KII)

Additionally, upon recommendation of several key informants, a list of existing TB screening, test and DOTS centers under the DIC catchment area was prepared, which would help peer educators to identify the nearest convenient centers for sexual minority people. The field research team collected the list of existing DOTS centers under Dhaka City Corporation, and developed the address and other particulars with the DIC manager and peer educators.

“[With a map], they (DIC staff/peer educator) will be able to track the location of [DOTS centres]. We know the locations, but some of them (peer educators) do not know. If they have a map, it would be easy to locate the nearest facility. Then, it will be advantageous for them.” (Representative from an NGO working under National TB Program, KII).

When we found that some sexual minority people were not showing up to the spots during the outreach hours, PEs adopted the strategy of reaching out to their homes, workplaces, etc. However, some PEs mentioned that many of the sexual minority people want to avoid communication with the PE at their home because their family members are either unaware or have not accepted their sexual orientation. Therefore, they were apprehensive that the feminine attitudes of the PE would disclose their identity as an MSM. In those situations, PE took them outside their home to a convenient location for TB screening. In addition, some of the sexual minority people were contacted and screened at their workplaces as they could not regularly come to the spots due to work engagements. In those cases, PEs physically arrived at those places for TB screening. Moreover, many hijra did not have the freedom to visit PEs because of strict rules from the hijra guru. In that circumstance, to screen them, several PEs collaborated and went to those deras after seeking prior approval from the guru. In those sessions, PE collectively shared knowledge about TB and then screened them out individually.

Concurrently, PEs also went regularly to some social gatherings locally called majma. Some majmas are street-based events where conmen sell herbal medicines. There are episodes of dancing and singing which usually entice people, including sexual minority people. PEs sometimes visited those street-based events to locate sexual minority people since they were aware that they would usually go there for entertainment and buying medicine.

On many occasions, PEs used phone or other social media (e.g. imo, messenger, WhatsApp etc.) to ask them to come to spots or any other convenient locations for screening. We found during the data collection period that sexual minority people maintained a virtual community through social media. All the PEs with access to smart phones are also part of these virtual communities. When they started community-based TB screening, they added this virtual community into the process to inform their community people about this new approach and encourage them to be a part of this process. Some PEs reported that this process was useful for contacting and screening the sexual minority people. However, it is important to note that this screening is not virtual, thus warranting their physical presence. This communication tool was used to disseminate knowledge and ask the sexual minority people to meet them for TB screening purposes.

Because of these quick adaptations, PEs were able to conduct community-based TB screening with 905 sexual minority people out of 1007 listed in the DIC under the intervention. Both the sexual minority people and PE reported that they successfully screened all participants as per the guidelines given to them.

The introduction of the intervention engendered a greater number of TB screenings and presumptive case identification for sexual minority people. Since the PEs were a part of the same community, it was easier for them to situate the participants at their most frequented venues and optimize screening coverage. As a result, TB screening rate was significantly increased in the intervention site where 905 persons among 1,007 sexual minority people were screened, compared to 247 sexual minority people among 926 at the comparison site (90% vs. 27%, p < 0.001) within the intervention period. Because of the increased TB screenings, the rates of identification of presumptive cases also significantly increased in the intervention site relative to the comparison site (5.9% vs. 0.8%, p < 0.001). In addition, the referral rates were also increased in intervention site, 53 presumptive cases were found and 50 of them were successfully referred to the TB testing center and tested (3 were referred but not tested). One TB positive case was identified (2%) among 50 tested, and linked to treatment. In addition, the quantitative data for both intervention and comparison sites of pre-intervention and intervention period for TB screening, presumptive identification and testing (TB care cascade) among sexual minority people is given in Table 3.

One of the aims of this intervention was to improve the knowledge of sexual minority people. Almost all IDI and FGD participants were able to accurately relay the risks, routes of transmission, symptoms and course of treatment. Many of them had some ideas about TB beforehand but those were inaccurate or incomplete. In most cases, the peer educator discussed information pertaining to TB with participants during outreach visits. Hence, because of this repeated dissemination of information, the information was engrained within their knowledge base. Some participants also reported that they felt more relieved knowing that they had provisions for free treatment and medication. Moreover, a few participants felt reassured that they had adequate knowledge to identify a presumptive case in their family or social network and attain the necessary help. Most of the PEs never had any organized and focused training session on TB before this study but received repeated and rigorous training sessions during the study. This substantially expanded their basic knowledge of TB and course of treatment. At the same time, the knowledge sharing in the field with sexual minority people and on the field monitoring and supervision helped them memorize the key messages that they were disseminating among sexual minority people.

The intervention model changed the participants’ attitudes towards the DOTS centre. Presumptive cases who visited DOTS centre perceived themselves as ‘confident’ to visit TB testing centre ‘alone’ in the future. They also agreed to motivate community Gotiya (peers) to go DOTS center, as service providers were very cordial and sympathetic to sexual minority behavior. As one of the participants mentioned:

“They have never ignored me in the DOTS center. Secondly, they have not given me any glares (aar chokhe takai nai). I have never faced any instances where the DOTS center people treated me harshly. Even when I went to the X ray room, where I was supposed to take off my clothes, I told him that I have a problem with being shirtless. Then he offered me a scarf (orna) and I placed it on my body. As they understood my situation and offered me a scarf, I feel very comfortable and pleased. I will motivate other people to go such places where I felt comfortable going.” (MSW, 35 years, Intervention site, IDI)