Tuberculosis related stigma in India: roadblocks and the way forward

KEYWORDS:

• Case finding challenges
• India
• stigma
• tuberculosis

1. What is the situation of TB stigma in India? What are some of the reasons for stigma? Would this understanding help in TB care delivery?

India has the highest-burden of tuberculosis (TB) patients globally and TB control has been the focus of the Government of India’s Revised National TB Control Programme (RNTCP) [1–3]. The National Strategic Planning (NSP 2017–2025), based on the achievements of the last NSP has embarked on a bold vision to eliminate TB in India by the year 2025 [4]. While all these efforts are in force toward this goal, there is a need to introspect and analyze on what factors need to be addressed to achieve this desired goal. A recent national-level analysis provides clear and multiple steps of the TB cascade where TB patients are lost to care which substantially undermine care delivery in the RNTCP [5].

One of the primary reasons for these losses is the prevailing stigma associated with Tuberculosis. Stigma is a social determinant of health, that is shaped and promulgated by institutional and community norms and interpersonal attitudes [6] which is relevant across this TB cascade from delayed care-seeking behavior, delayed diagnosis or poor anti-tuberculosis treatment adherence [7–10]. A community-based survey conducted in 30 districts in India reported, 73% had a stigmatizing attitude toward TB patients [11].

Firstly, delays in care-seeking and delayed diagnosis fueled by stigma lead to increasing the size of the infectious pool of TB which enhances the risk of household contact transmission and community transmission [12]. Hence, addressing stigma is one of the keys to prevention of TB transmission.

Secondly, there is a report of more than 50% of TB patients experiencing stigma after being diagnosed [13]. Yet another study conducted in India, estimated that >200 000 patients experience pre-treatment loss to follow-up (PTLFU) annually in the national TB programme [14]. This refers to the dropout of patients after diagnosis but before treatment registration which is a major gap in tuberculosis care in India and globally. There are various reasons for these high rates of PTLFU and stigma plays a vital role. At the individual level, patients fear the diagnosis and related issues and fear of disclosing to the family have led to their being lost to follow up after diagnosis [15]. Furthermore, the unfriendly approach of health care providers and lack of adequate counseling has emerged as an important reason for losing TB patients to care [15,16]. It is worrisome that TB patients experience stigma from health care providers, who they look up to alleviate them of their pain due to their illness [15,16]. This goes against the principles of health care and is a major impediment for TB elimination.

Against this background, it is a matter of concern that the focus of TB control has been largely on biomedical approaches with not much attention to behavioral interventions to mitigate stigma [17].

2. What are the reasons for TB stigma? Are there gender differences?

Studies have suggested that the reasons for TB stigma are because of the fear of transmission of the airborne infection, fear of losing social status, social isolation, gossip, verbal abuse, failed marriage prospects, and neglect from family [18–20]. There is also the notion that TB is a hereditary disease and therefore, not just the individual but the family has a role to play in deciding who gets infected with TB and consequently, face discrimination. Interestingly findings from a survey reported that respondents who were aware that TB is curable and is transmitted through the air had high stigmatizing attitudes [11] undermining the assumption that knowledge could negate stigma.

Interestingly, stigma in India cuts across gender with both men and women facing varied challenges. Women reported more TB stigma related to reduced prospects of getting married and for those married fear of separation, divorce, isolation and rejection within families especially from in-laws. Men reported stigma related to occupation and fear of loss of their jobs [21–24]. Perhaps this brings attention to the need for gender-sensitive interventions to mitigate stigma.

3. Does active case finding perpetuate stigma?

To overcome the challenge of missing TB cases through passive case finding and increasing TB notifications, one of the bold steps that India took in 2017 was to actively search for TB among vulnerable and marginalized groups. This means finding cases by going door to door under active case finding to find presumptive TB cases and collect sputum specimens for investigations. The main objective was to accelerate early diagnosis and initiation of treatment. Under this strategy, nearly 190 million population have been screened reaching remote areas with mobile TB units, yielding an additional TB notification of 47,307 persons infected with TB [25,26]. While the TB control programme may be encouraged with the increase in case notification, there have been many concerns that are ignored with little attention to the stigma that this strategy perpetuates. This activity has been reported to be disturbing as health care workers visit the homes of the individuals for eliciting symptoms and collection of sputum which makes them uncomfortable, as this is done with little or no privacy leading to embarrassing questions from neighbors [27]. We see people in the community shying away from revealing their symptoms for fear of a TB diagnosis and still others who refuse to give sputum for TB testing once found to have symptoms of TB [27]. These reactions could be linked to the reports of stigma as a result of fear of discrimination, fear of losing their rented homes, prospects of their daughter’s marriage or fear of losing jobs [6,24,28].

Active case finding on the other hand, if done keeping the interests of the community, could help to address stigma as individuals with symptoms do not need to seek care outside for their symptoms and helps protect their identity as they are reached at their doorstep. However, for this strategy to be effective, we need to focus on community preparedness and community engagement at all levels where communities take ownership before the whole exercise of active case finding is done. This would involve engaging influential persons such as leaders, panchayat raj institutions (PRI), self-help group (SHG) women, youth, school students and many other formal and informal representatives from within communities. Currently there is an overdependence on Accredited Social Health Activist (ASHA) to link communities to care.

There needs to be a community participatory approach where communities are involved at every stage. This includes from framing of TB sensitization messages, the kind of sensitization and intervention programs, the reach of these programs as well as the review and monitoring of TB services as envisaged. It would also be worthwhile using celebrities as ambassadors for community TB sensitization as the impact they have is powerful and worth consideration. This lack of preparedness can be a huge deterrent to a holistic approach in TB management and control before elimination.

4. Way forward to mitigate TB related stigma

The stigma associated with TB has multiple layers and requires intervention across these various layers of the TB cascade. We need human-friendly, stigma-free, need-based psychosocial interventions along with clinical interventions as TB is not just a medical but a social disease as well. We need to promote trust in our health systems; we lack counselors in the TB program as we have in the HIV/AIDS program where counselors are an integral part of the programme offering psychosocial service from counseling to need-based referral services.

What we cannot afford to forget and constantly remind each other, is that anyone who breathes air is at risk of TB. This person can be one own child, parent, sibling, spouse or even grandparents. Our communities need to have this empathy and trust in the health systems; those individuals who are infected or affected by TB need to be assured that they can avail of the best human-centered quality TB care services not only for themselves but also for their families and communities as well. This would require a change from the top-down review and monitoring of TB services to community-driven monitoring which includes feedback from patients, their families and communities on the perception of TB care services and their suggestions for strengthening health systems. We need to come to a stage when TB is not going to be a disease that people want to deny or fear but a disease that people can talk about with their heads held high and seek timely care with the assurance that TB is curable.

5. Expert Opinion

TB related stigma continues to pose challenges in all TB control activities. This needs to be dealt with across multi-layers in the TB care cascade and requires psycho-social interventions that are patient-centered as well as health provider-centered.

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Additional information

Funding

This paper was not funded.