How can community-specific challenges be addressed while eliminating TB?
by Catherine Cove
The National Strategic Plan for TB Elimination (2017–2025) identifies a range of groups among whom there is a higher prevalence of TB, as well as persistently poorer treatment outcomes - including migrants, industrial and mining workers, tribal communities and others. While the National TB Elimination Program has recognised the need for a more targeted approach to these groups, additional evidence is needed on the challenges faced by each group and how best to address these. The Breaking the Barriers project is working to fill this evidence gap and provide evidence-based, people-centered solutions for TB prevention and care among vulnerable population groups. Mallika Tharakan, Results Delivery Officer and Lead, Knowledge Management at Karnataka Health Promotion Trust (KHPT) shares her insights into the program.
What is the Breaking the Barriers programme and what are its main objectives?
Breaking the Barriers is a community centered program that looks strongly at the community engagement components of TB response. The program is designed to cater to vulnerable population groups, including tribals, mining communities, industrial workers, urban vulnerable population groups, and migrants. The project is attempting to tackle the issues surrounding barriers to receiving treatment and health seeking behavior faced by these groups. Although there is widespread recognition of the need to work with vulnerable populations on TB, there are no current models that have successfully demonstrated what works. There have been blanket approaches for community engagement for TB, but none of these approaches address the specifics and nuances of each vulnerable population group. The BTB project gives us the opportunity to do that.
Looking at the target groups that breaking the barriers is engaging with, what are some of the challenges that those communities face with respect to TB care?
The National TB Elimination Program (NTEP) identifies vulnerable population groups based on factors like occupation, biological vulnerability to TB, and geography. Apart from that, we don’t have a specific understanding around the unique barriers or challenges that communities face regarding TB care. Over the initial six months of BTB, we are doing intensive primary and secondary research to analyze what are those barriers at the individual, family, and environmental levels. We are looking at what prevents these populations from having a comprehensive knowledge of TB, accessing services, getting tested, and continuing treatment if diagnosed. We are trying to understand the barriers at a micro level, and then design solutions that can tackle those barriers in a targeted manner.
What challenges has the National TB Elimination Program been facing in reaching these groups?
There hasn’t been a very evidence-based approach to designing solutions for these vulnerable population groups. In the context of NTEP, community engagement has been limited to the involvement of local champions. Secondly, vulnerable populations are broadly defined. For example, what do we mean by urban poor? There are migrant workers, domestic laborers, unorganised workers, and backward caste groups. How those characteristics impact successful program delivery is not well understood. Thirdly, there isn’t sufficient ownership of TB itself within the community. TB community engagement usually refers to the TB patient and caregivers. The involvement of the general population through community structures is still rather unexplored in the context of vulnerable populations. In our repeated interactions with NTEP, they’ve highlighted that this area is a challenge. Organizations like ours can fill that gap.
How is BTB working to fill those gaps? How will the program be ensuring inclusive, culturally sensitive care?
BTB’s theoretical framework is based on a socioecological model. This socioecological model positions our interventions at four different levels: i) the individual level, which is the TB patient; ii) the interpersonal level, which consists of the family and caregivers; iii) the community level or ecosystem level, which consists of community networks, CBOs and community structures, and; iv) the systems level. BTB focuses primarily on the first three levels. Using design thinking and behavioral economics, we are developing tailored behavior solution frameworks. Our overall vision as an organization is to empower communities to assert their rights to a life of dignity and wellbeing. At a patient level, we are creating a patient centered empowerment approach to enhance self-esteem and linkages, and create patient role models. At a family level, we are looking at family transformation and how the family can become a source of inspiration for the patient. At the broader ecosystem level, we are examining how we can work with informal and formal community structures. The idea is not to create parallel structures, but to leverage the strengths of existing structures within these communities. At the systems level, we have a strong learning, scaling and advocacy component. At the end of the day, we want to see how this work contributes to driving the TB agenda.
What are some of the challenges or facilitating factors that influence project delivery?
One challenge is the lack of a community perspective and convergence among the frontline, especially in the context of TB. Also, it is difficult to continuously elicit support from the community structures. We need to adopt an approach that serves the purposes of the community structures as well. The only way to sustain these initiatives is by having the community find value in what we’re doing. Another challenge is around making sure that this approach is adequately adopted across geographies. The third challenge is the stigma surrounding TB. Until TB is destigmatized, we will be unable to make sufficient inroads. In addition to these broad challenges, there are very specific challenges unique to each of the vulnerable groups. For example, what are the challenges that migrants face at the source and the destination sites? BTB is looking at understanding these challenges and tackling them.
How has COVID-19 impacted activities and what have you learned from the experience?
This is a challenge, no doubt. For organizations like ours that are community centered, outreach and grassroots work is the backbone of what we do. We decided that we are going to continue working and have increased the salary of our frontline to make sure that they are motivated, safe and financially secure. We know the adverse effect that COVID will have on TB patients. Since the outbreak began, the evidence is telling us that there has been a 60% drop in TB case detection, which means that many TB patients are going undetected. It’s a huge setback for other disease conditions because the health system is completely focused on COVID. We must ensure that the TB response remains strong and that communities are not negatively affected.
One of our key learnings was that we had to step out of our mandate to address the immediate concerns of the populations. For example, humanitarian aid is not something that is part of our mandate, however, for an end user, it is critical for us to ensure that he gets his next meal. We’ve learned the importance of being extremely sensitive to the challenges that the pandemic is posing on vulnerable populations. We always have had a heart for communities, and I think that the pandemic has resulted in another layer of sensitivity and care.
The Breaking the Barriers (BTB) program innovates and implements patient-centered and family-focused solutions for TB prevention, care and control. BTB has been launched by the Karnataka Health Promotion Trust (KHPT) in Karnataka, Bihar, Assam and Telangana with support from USAID and implementation partners.
Catherine Cove is a Technical Specialist working on Public Health and Program Evaluation at the Catalyst Group.