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ORIGINAL ARTICLE
Year : 2022  |  Volume : 66  |  Issue : 1  |  Page : 38-44  

Barriers to treatment adherence for female Tuberculosis (TB) patients during the COVID-19 pandemic: Qualitative evidence from front-line TB interventions in Bengaluru City, India


1 Assistant Professor, Centre for the Study of Social Change and Development, Institute for Social and Economic Change, Bengaluru, Karnataka, India
2 Senior Research Fellow, Centre for the Study of Social Change and Development, Institute for Social and Economic Change, Bengaluru, Karnataka, India
3 Research Scholar, Centre for the Study of Social Change and Development, Utrecht University and Institute for Social and Economic Change, Bengaluru, Karnataka, India
4 Research Scholar, Centre for the Study of Social Change and Development, Institute for Social and Economic Change, Bengaluru, Karnataka, India

Date of Submission06-May-2021
Date of Decision23-Nov-2021
Date of Acceptance24-Nov-2021
Date of Web Publication5-Apr-2022

Correspondence Address:
Sobin George
Centre for the Study of Social Change and Development, Institute for Social and Economic Change, Dr. VKRV Rao Road, Bengaluru - 560 072, Karnataka
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijph.ijph_1146_21

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   Abstract 


Background: Available evidence shows that India's ongoing COVID-19 pandemic response has adversely affected the national tuberculosis elimination program. Objectives: The study attempted to understand the barriers to successful treatment adherence for female tuberculosis (TB) patients due to disruptions caused by the pandemic. Methods: The study draws on qualitative in-depth interviews conducted with patients and TB health visitors from Bengaluru city before and during the pandemic period using a grounded theory approach. Results: While TB has the potential to push female patients who worked in informal arrangements to joblessness and poverty, the pandemic situation has exacerbated these vulnerabilities. The pandemic situation slowed down or suspended vital frontline interventions such as active case finding, distribution of medicine, follow-up of sputum examination, monitoring of medicine intake, and patient support measures. Conclusion: The pandemic-induced barriers to treatment adherence for the vulnerable TB patients can lead to adverse treatment outcomes including disease relapse and drug resistance. It is hence suggested that there is an urgent need for recasting the frontline TB interventions in India in the context of the pandemic in order to achieve the goal of TB elimination.

Keywords: Barriers to adherence to treatment, COVID-19 pandemic, female tuberculosis patients, front-line health interventions, tuberculosis


How to cite this article:
George S, Paranjpe A, Nagesh P, Saalim M. Barriers to treatment adherence for female Tuberculosis (TB) patients during the COVID-19 pandemic: Qualitative evidence from front-line TB interventions in Bengaluru City, India. Indian J Public Health 2022;66:38-44

How to cite this URL:
George S, Paranjpe A, Nagesh P, Saalim M. Barriers to treatment adherence for female Tuberculosis (TB) patients during the COVID-19 pandemic: Qualitative evidence from front-line TB interventions in Bengaluru City, India. Indian J Public Health [serial online] 2022 [cited 2022 May 18];66:38-44. Available from: https://www.ijph.in/text.asp?2022/66/1/38/342584




   Introduction Top


The COVID-19 pandemic has not only exposed the long-standing neglect of public health in India and but also pointed out the need to make the health service system more resilient and responsive.[1],[2],[3] The pandemic, as reported by the mainstream Indian media, has stressed the already overburdened healthcare delivery systems in several Indian states. There is evidence that the pandemic responses adversely affected the other high-priority national health programs. The national tuberculosis elimination program (NTEP) faced disruptions in delivering the front-line activities due to the redeployment of healthcare workers, diversion of tuberculosis (TB) diagnostic facilities for COVID work, conversion of hospitals exclusively for COVID care, and diversion of budgets.[4],[5],[6] There are also predictions that the disruptions of NTEP by the pandemic would increase TB incidence and mortality[7] and TB–COVID-19 co-infection that leads to TB disease progression and worsening of severity of COVID-19 among TB patients[8] in India.

Studies also highlighted the implications of the pandemic-led disruptions in TB control programs for a vulnerable group of patients, particularly for female patients who were at a higher risk of impoverishment due to their possible exit from the labor market during the pandemic.[9] Vulnerable TB patients, particularly, women face the risk of COVID-19 co-infection since they live and work in dense and precarious environments.[10] Adverse treatment outcomes due to poor adherence to treatment of vulnerable groups of patients have been one of the major obstacles for the realization of India's goal of elimination of TB.[11] It is important in this context to understand how adherence to TB treatment regimen for female patients was affected by the disruptions caused by the pandemic.


   Materials and Methods Top


The paper draws on a qualitative study conducted among female TB patients and TB health visitors (TBHVs) in the city of Bengaluru, India, in the pre and post COVID-19 periods. Participants of the in-depth interviews were selected purposively from a baseline survey that was conducted at 18 directly observed treatment, short (DOTS)-course centers across four regions of Bengaluru city. The baseline survey covered 188 female patients who underwent the DOTS treatment. Since the focus of the study was to understand the barriers of women who work in informal arrangements to treatment adherence, the main criterion for the selection of patient participants was their status of work as “currently working” or “recently worked” at the time of the interview. Based on this criterion, the study selected 80 willing female patients for in-depth interviews by following the data saturation method. Eight TBHVs were identified for the interview based on their willingness. The first phase of the interview was conducted from January to August 2019. The COVID-19 pandemic brought about a new dimension to the barriers to treatment adherence of female patients working in the informal sector due to their heightened vulnerability subsequent to loss of job, reverse migration, and exposure to the pandemic while working. We followed up with the patients and TBHVs to understand the processes of their adherence with the treatment regimen. However, only 10 patients who participated in the first phase were continuing treatment. Follow-up interviews were conducted with these participants and with the same eight TBHVs in the months of April 2020 (during the period of the nationwide lockdown) and August 2020 (during the phasing out stage of lockdown). These interviews were conducted telephonically.

We used the grounded theory approach. All interviews were conducted in the local language, Kannada. Interviews were recorded, and the verbatim transcribed and translated to English by bilingual experts. Sufficient care was taken to reproduce the information in participants' own words, phrases, and expressions. Data were analyzed using qualitative software Atlas-ti 7. We identified 15 codes that belonged to three code families for analysis, which were further categorized as core and subthemes of barriers to adherence to TB treatment [Figure 1].
Figure 1: Core and sub-categories emerged from interviews with female patients and TB health visitors.

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The research study was approved by the Ethics Committee of the Institute for Social and Economic Change, Bengaluru in the meeting conducted on March 23, 2017 (No. DPA/120/CSSCD/IEC/2017). The consent of the participants who were recruited for the study was obtained using a consent form. The consent form was prepared in the local language of Kannada, and the same was explained to the participants. The transcribed data was anonymized in order to preserve the identity of the participants.


   Results Top


The socioeconomic and demographic profile of the patient participants are provided in [Table 1]. Except six, all participants worked in informal settings. The sample comprised of 35 pulmonary and 45 extrapulmonary patients. There were three multidrug-resistant (MDR) cases. Six patients in the sample had diabetes mellitus, and one patient had HIV. There were 11 recurring cases in the sample in the first phase. Out of 10 patients who participated in the second phase, 6 worked in lower-rung service jobs; three in factories and the remaining one participant worked as domestic help.
Table 1: Sample characteristics of female working patient respondents participated in In-depth interviews

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Loss of work, falling back to poverty and women's increased vulnerability to tuberculosis

Loss of work subsequent to TB infection was experienced by several participants. While some participants left the job (voluntarily or reluctantly) due to increased fatigue and their inability to work, others were retrenched by their employers. The consequences of TB on the ability to work resulted in the termination of work for few patients too [Table 2]. Loss of work and income affected the food and nutritional intake of the female patients who were under DOTS treatment. Follow-up interviews showed that patients who continued to work during DOTS treatment lost their job during the pandemic. Finding money for regular household expenditures such as house rent and school fees were difficult for all the patient respondents who lost their jobs during the pandemic. Although they managed initially with borrowing, mortgaging, and selling of assets, prolongation of the period without work eventually pushed them back into the poverty spiral. Migrant workers who did not possess documents such as ration cards did not receive the benefits of the remedial measures provided by the state to cope with COVID crisis [Table 2]. In such conditions of abject poverty, nutritional requirements of the female patient were often not prioritized both by the patients themselves and other family members. Female patients noted that “being a mother and wife” makes it difficult for them to consume “good food” without sharing it with children, husband, and other members of the household. Their narratives also highlighted the gendered practice of food consumption at households; women are not only prioritized the least but also need to shoulder the moral burden of living up to the constructed image of “being nice” by compromising their nutritional requirements for other prioritised members in the household [Table 2].
Table 2: Loss of work, falling back to poverty and work-life-treatment balancing: Qualitative illustrations

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Work-life-treatment conflicts aggravated for female patients during the pandemic period

Balancing of work, life, and treatment was a major theme that emerged in the initial as well as the follow-up interviews from the female patients who worked in the informal arrangements. Their narratives reflected how the TB treatment intertwined with work and family [Table 2]. Most importantly, the timings of DOTS centers and work always clashed for them. In most of the cases, employers did not allow them to visit DOTS centers during working hours. It was reported that the patients tended to restrict the number of DOTS visits, depended on significant others (mostly mothers) to collect medicines, and shifted to unsupervised DOTS to avoid loss of pay for the time/day that they spent at the DOTS center. These coping practices led to the violation of DOTS protocols and resulted in poor treatment adherence.

The avoidance and apathy of the family members also adversely affected work-life-treatment balance for female patients [Table 2]. It was found that certain families, especially marital families, inflicted stigma when the female member was diagnosed with TB. Follow-up interviews conducted during the lockdown period showed that such conflicts in work, life, and treatment aggregated during the COVID-19 pandemic. For married patients, spouse violence emerged as a major issue. Fear of loss of available work was also reported as a major factor of stress for the the patients. In order to save the family from falling to poverty, they tended to prioritise work over TB treatment and the fear of COVID infection [Table 2].

Flexibility in DOTS administration during the pandemic led to violation of treatment protocol

Subsequent to the imposition of lockdown and related restrictions on travel and work, several changes have been made in the administration of the DOTS program. Most importantly, the frequency of visits to DOTS centers was reduced (ranged from once in a month during lockdown to once a week after lockdown), and medicines were distributed for a longer period of time. Physical follow-up was replaced by mobile phone-based virtual follow-up. However, there were situations wherein the TBHVs reported could not distribute drugs to patients due to lockdown even with the introduction of these flexibilities [Table 3]. It was reported that unsupervised DOTS and virtual follow-up led the vulnerable patient migrant workers, substance users/alcoholics, patients who suffered from side effects, and patients who did not have family support to defaulting. The reverse migration of patients who were under treatment was another major challenge. TBHVs that while migrant patients could continue the treatment in their native places since all information of the patients are available through their unique Nikshay identification number; the coordination with patients and local DOTS centers was difficult. In some cases, patients who returned to remote areas could not access DOTS centers as the service was not available near their locality. TBHVs reported that patients hesitated to go to the local DOTS centers for the fear that they would be quarantined since they returned from cities where COVID spread was high. Virtual follow-up of migrant patients, mainly through mobile phones, was not successful due to issues such as deactivation of phone numbers, switching off of mobile phone by the patients, and technical problems associated with mobile phone networks [Table 3].
Table 3: Barriers to frontline interventions during the pandemic: Qualitative illustrations

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Deployment of NTEP resources for COVID management suspended follow-up investigations

It was found that deployment of NTEP staff, including TBHVs for COVID-related work (mainly health surveys, awareness generation, and contact tracing), considerably hampered their routine front-line TB work [Table 3]. As reported by TBHVs, this has reduced the active case finding (ACF) during the lockdown period. Similarly, TBHVs noted that closing down of outpatient departments in public hospitals due to the pandemic delayed TB diagnosis. Another major barrier was the unavailability of laboratory facilities for TB diagnosis due to COVID care. Not all DOTS centers are adequately equipped with laboratory facilities, and follow-up examinations are usually done in other government-run laboratories. As a result, the number of sputum and other follow-up investigations came down during the lockdown periods. There were also instances where TB patients could not avail of treatment for co-morbidity since most of the public hospitals were either partially functioning or reserved exclusively for COVID care [Table 3].


   Discussion Top


Our results point to the barriers that can come in the way of realizing the goal of elimination of TB in India by 2030 due to the structural problems of poverty and poor conditions of employment for vulnerable group of people, as well as the challenges that front-line TB interventions face during health emergencies such as the present COVID-19 pandemic. These are discussed below.

Vicious cycle of tuberculosis, COVID-19 pandemic, and poverty for female patients

The vicious cycle of TB and poverty and its gender interfaces are well illustrated in the Indian context.[12],[13],[14] Studies in the context of the COVID-19 pandemic have predicted that loss of jobs and decline in food consumption can lead to worsening of the problem of under-nutrition, which in turn can increase TB incidence.[7] Our findings showed that the COVID-19 pandemic situation exacerbated the already existing vicious cycle for female patients since the burden of TB infection and disruptions caused due to the pandemic led to the loss of job and earnings. The cycle of illness and loss of earnings lead to the occurrence of large debts upon the female, sending the entire household into a poverty spiral. The interconnectedness of TB and poverty has been a matter of concern in NTEP, considering the huge share of the population below and near the poverty line and the possibility that TB could push families further into poverty and increase the vulnerability to other diseases. The NTEP program, as part of the patient support measures, introduced interventions such as direct transfer of nutritional allowance (of ₹ 500 per month) and linked households of poor patients to existing social support programs. However, it was found that such remedial measures were inadequate even before the pandemic, and it is possible that nutritional assistance could be spent for other purposes instead of exclusively being used for the patients. The short-term remedial measures without addressing the real structural problems of poverty, hence, may not help the vulnerable patients. The economic implications of TB on the patient and the household are long-lasting and need to be approached comprehensively more so for vulnerable households wherein the patient is a woman and sole earner of the household. This assumes greater significance in the event of pandemics such as COVID-19, which led to a loss of employment and earnings for workers engaged in informal arrangements.

Unmet needs of female tuberculosis patients and treatment adherence

It is already brought out by studies that several social, economic, and cultural reasons, which include lack of knowledge of the patients, constraints related to family life and religious practices found to have interacted with the compliance of DOTS regimen.[15],[16] We found several unmet needs pertaining to work and family life that led to poor adherence to treatment for female patients. The female patients, especially in the lower socioeconomic group, had to fight on several fronts at the same time. On the one hand, there were debilitating symptoms of disease and coping with the hardship and drudgery of household work. On the other hand, there were concerns of losing the employment if the disease was disclosed to the employer and fear of stigmatization by family members, relatives, friends, and neighbors. Significantly, employment and working conditions were hostile and not enabling for TB patients who worked in informal arrangements in several ways. These included unfavorable physical conditions of work and the precariousness associated with informal work such as work intensification, lower wages, absence of collective bargaining, lack of social security entitlements, and poor regulation. Timings of DOTS centers, the regimen, side effects, and requirement of follow-up investigations tended to conflict with the work timings of patients. Such conflicts ultimately led to unsupervised treatment or violation of DOTS protocols.

Systemic weaknesses and implications for front-line tuberculosis elimination interventions

Available evidence showed that under-detection during COVID-19 lockdown increased TB mortality in India.[7] Our findings indicate that lockdown and subsequent restrictions as well as the additional burden on the already stressed health service delivery system disrupted the front-line activities of the TB elimination program. It has particularly exacerbated the systemic issues of healthcare delivery with the deployment of front-line TB health workers for COVID management and restricting the access to hospitals and laboratory facilities to non-COVID patients. Measures such as flexibilisation of DOTS regimen that included reduction of number of DOTS visits and issuance of drugs for longer duration tended to backlash, especially among new patients and vulnerable sections. Virtual follow-up of the patients was also not successful. All these resulted in reduction in the front-line interventions of ACF, sputum examination, chemical prophylaxis, and counseling of TB patients.


   Conclusion Top


The NTEP envisages elimination of TB in India by 2025 as part of the commitment to the target of the third Sustainable Development Goal. NTEP already faces several challenges with regard to the early detection, completion of treatment regimen, managing of MDR, and extremely drug resistant TB, supporting of vulnerable population and management of comorbidity that can hamper achieving the goal of TB elimination. The COVID-19 pandemic brought about new operational barriers to NTEP in realizing the goal of TB elimination. It has altered the treatment-seeking behavior of vulnerable patients who ended up in violating the DOTS protocol in order to sustain the available work – irrespective of its risks and precariousness – during the pandemic period to keep their family out of falling back to poverty. It has adversely affected the TB front-line interventions. The study notes that the pandemic-induced barriers to treatment adherence for the vulnerable TB patients can lead to adverse treatment outcomes including disease relapse and drug resistance. It is important to understand the extent of underdetection and cure rate of TB as well as defaulting and poor adherence to treatment due to the disruptions caused by the pandemic. The study suggests that there is an urgent need for recasting the front-line TB interventions in India in the context of the pandemic in order to achieve the goal of TB elimination. Finally, it is also equally important to prevent the falling back of vulnerable groups of patients into poverty during such eventualities by implementing appropriate social assistance programs.

Limitations

Interviews in the second phase were not as exhaustive as those that were conducted in the first phase since these were conducted telephonically. The first phase of the study focussed only on female patients working in the informal sector; hence, the follow-up interviews among patients were limited to the same group of participants, although the pandemic affected all. The sample size was small in the follow-up interviews since only a small number of patients who participated in the first phase were continuing DOTS regimen when the follow-up interviews were conducted.

Acknowledgements

The authors acknowledge the support of Mr. Gautham Sathyaprem and Ms. Kusuma C R for conducting the fieldwork.

Financial support and sponsorship

This work was supported by the Indian Council of Medical Research, New Delhi (Project No. 7/2016/ICMR-ICSSR-SBR).

Conflicts of interest

There are no conflicts of interest.



 
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