In this qualitative study among people presenting for care with TB symptoms we found most participants experienced SDoH-driven challenges in the TB diagnostic evaluation process. Overall, participants reported a complex interconnection between multi-level social determinants of health and TB care seeking, testing, and treatment behavior. Care seeking delays were multifaceted and reflected the effect of social, financial, behavioral, psychosocial, and systemic determinants (Fig. 1). Our analysis notably found that the majority of the SDoH framework domains were relevant to TB diagnostic evaluation. When mapped to the COM-B framework, we found these SDoH domains influenced TB diagnostic and care seeking behavior by affecting the essential constructs of capability, opportunity, and motivation. While these results may seem overwhelming, by situating our findings within the COM-B model we can streamline them into improved intervention design and implementation as well as potential policy approaches to facilitate change. For example, while the breadth of SDoH domains noted in our analysis suggests no single determinant was responsible for influencing diagnostic evaluation, most all of these SDoH factors affected “opportunity” for accessing and completing TB care. Using the Behavior Change Wheel (BCW) [33], which translates sources of behavior (capability, opportunity, motivation) into potential implementation strategies, our results suggest that strategies which enable behavior, through environmental restructuring, education, incentivization and facilitated by enhanced environmental and social policies and planning, could mitigate barriers to TB diagnostic evaluation faced by individuals in this high TB burden, low-income setting [33].
In line with other studies that have assessed the barriers, burdens and challenges to individuals during TB diagnostic evaluation [36, 37], we found that cost tradeoffs are made in the beginning of the TB evaluation process as individuals decide to seek care and are significant barriers that mitigate the physical and social opportunities necessary for testing and treatment initiation as well as the reflective motivation required to adhere to care. During the diagnostic process, participants frequently reported loss of income, which in the Uganda setting is further complicated by the fact that more than half of all income generating activities are within the informal labor economy, and unemployment is also high [38]. Therefore, care seeking requires both actively deciding against at least one day of wages or identifying a source of money to seek care, and requires acceptance of added transport costs. Interventions such as social planning policies, including social protection or social development programs, could provide the opportunity necessary to offset costs that prevent individuals the opportunity to access TB diagnostics and could incentivize individuals to remain in care. Such programs often defray either direct costs associated with attending the clinic, such as cash transfers or transportation vouchers, or offset opportunity costs that often endanger basic needs, for example, money to purchase food and pay for school fees for children [39]. Cash transfer interventions have also shown significant promise as an approach that can mitigate barriers and motivate people to engage in the TB diagnostic evaluation cascade [40].
We found anticipated and internalized TB-related stigma to be significant factors that impacted participants in our study and undermined the social opportunity and reflective motivation central to seeking care, testing, and treatment initiation behaviors. TB-related stigma has been well documented as a significant factor in engagement in TB prevention, care seeking, and TB treatment [41–43]. It persists despite the known interplay with uptake of and adherence to TB care, particularly in high-burden settings. There is a dearth of well designed, evidence-based interventions to address TB-related stigma in this context. TB clubs or social support groups have been used to address internalized stigma in several settings, with modest impacts [44, 45]. However, these clubs are better suited to individuals who have already been initiated on treatment. Education, another tenant of the BCW intervention aligns with addressing social opportunity-related sources of behavior, and training to address motivation-influenced sources of behavior, may be a starting point to consider appropriate interventions to address TB-stigma in the TB diagnostic evaluation period. However any intervention focused on education will need to consider the extant literature and existing approaches that have had mixed success [45]. As anticipated and internalized stigma reinforce loss to follow up in TB care, interventions to address these factors remain of critical importance.
Our findings revealed that gender inequality contributed to the delays both men and women experienced in their TB diagnostic evaluation journey by limiting their social opportunity to access care. For example, many women in our study said they deferred visiting the health center because they had to take care of children and provide food for them. Women with younger children could not leave their children at home without any care. This traditional division of domestic labor gender roles caused many women to postpone health visits due to limited opportunity. Men felt that missing a day of work because of their sickness could interrupt their ability to provide for the family and violate their roles as providers for the household. Because of the cultural structure of gender roles and limited access to finances, women depended on men to provide financial support to enable travel to the health center, eroding their opportunity to seek care and testing. These findings are in keeping with existing literature on the role of gender in TB diagnosis. A systematic review conducted in the African and Asian regions reported that women more than men were affected by financial, physical, stigma, and literacy related barriers in TB diagnostic evaluation [46]. While providing money and social support alone may not solve gender inequalities directly, it might allow health to be prioritized with all the other household needs for women, thereby reducing TB disparities.
Our study was the first in our setting to document SDoH as barriers and enablers to TB diagnostics evaluation when mapped onto a behavior change model. We were able to identify key drivers among the social determinants of health that could influence participant behavioral changes. However, this study was not without limitations. Despite efforts to purposively recruit this age group, representation from women in the age range of 60 years and over was lacking in our sample. We attempted to mitigate this limitation by interviewing an additional 3 participants with the goal of increasing the representation of this group. We recruited participants who were already present and engaging in TB diagnostic evaluation, which may mean we lack the perspectives of individuals who have yet to engage in this process. However, participants were able to speak to their decision-making process to seek care and the barriers and facilitators before they presented to the health center. While qualitative findings are not intended to be generalizable, our findings provide important insights that may be transferable to other high-burden TB settings. Additionally, our use of framework analysis and the familiarity of primary data analysts with the context in which the study was conducted lend to the trustworthiness of these findings. This methodology may be used to identify context specific social and structural barriers and facilitators to TB diagnostic evaluation or other aspects of TB prevention and care that can be targeted by interventions that address capability, opportunity, and motivation using additional implementation science tools.