Psychosocial barriers and challenges faced by Drug resistant tuberculosis (DR-TB) patients and their caregivers in South India

ARTICLE INFORMATION Nagarajan K, Kumarsamy K, Begum R, Panibatla V, Reddy R, Adepu R, Munjattu JF, Sellapan S, Arangba S, Goswami A, Swamickan R, Muniyandi M. A Dual Perspective of Psycho-Social Barriers and Challenges Experienced by Drug-Resistant TB Patients and Their Caregivers through the Course of Diagnosis and Treatment: Findings from a Qualitative Study in Bengaluru and Hyderabad Districts of South India. Antibiotics (Basel). 2022 Nov 10;11(11):1586. doi: 10.3390/antibiotics11111586. SUMMARY The article presents a qualitative study that explores, differentiates, and tries to understand the difficulties and barriers in psychological, social, and other challenges faced by exceptionally treatment-compliant drug-resistant tuberculosis (DR-TB) patients and their primary family caregivers in Bengaluru and Hyderabad districts of South India. The duration of the study was 2020–2022. The study was ethically approved by ICMR-NIRT’s Institutional Ethics Committee in Chennai and the Institutional Ethics Review Board of St. John’s Medical College in Bengaluru. The participant information sheet was given to all participants, and written informed consent was taken. DR-TB patients who were enrolled in the National Tuberculosis Elimination Programme of these two districts were line-listed with the help of a web-enabled TB management portal called ‘NIKSHAY’. Criterion sampling was used to identify the eligible participants. Participants who had successfully completed DR-TB treatment without interruption for ≥2 consecutive days, called ‘positively deviant’ were identified in this sampling method. A step-by-step procedure was used to identify these participants. First, frontline healthcare providers identified 192 and 73 DR-TB patients who fulfilled the sampling criteria in Bengaluru and Hyderabad districts, respectively. Then, the study team (consisting of trained, qualified social and public health workers) cross-checked these patients and identified 78 and 36 patients who showed better adherence in Bengaluru and Hyderabad districts, respectively. The caregivers were individuals nominated by the DR-TB patients as those who helped them with treatment completion. Data collection was done using a face-to-face, semi-structured interview. An interview guide with probes (tailored for each participant) was developed, which explored various domains of their lives concerning the diagnosis, treatment initiation and treatment completion. The caregivers were also interviewed similarly, but a specific interview guide was used. A pilot test was done involving two participants before commencing the study. Interviews lasted for 45–60 minutes each and were recorded. All interviews took place in the participants’ native languages. Interviewers were experienced in their field and were uninvolved in patient care. Data analysis was done using a software called NVivo 12.0 (QSR International, Melbourne, Australia) for thematic analysis. Recorded interviews were transcribed and translated from the local to the English language. Transcribing and translating quality were evaluated. Three members of the study team generated a preliminary coding framework. Top-level codes were derived; sub-themes and major themes were developed. A consensus was reached wherever there was disagreement on the emerging sub-themes and themes. The saturation principle was followed when no additional qualitative information was needed to analyse the data. They took 20 DR-TB patients along with their caregivers for interviews. The average age of the patients was 36 years, and the majority were male (65%, n = 13). The average age of caregivers was 42 years, and the majority were female (70%, n = 14). Over 70% of patients were school-educated, and 1/5th of the caregivers were illiterate. All patients had been treated with a shorter regimen containing injectables. Three main themes emerged about the barriers and challenges the patients and caregivers encountered. Theme one was ‘emotional issues and social barriers’, and the sub-themes identified were ‘fear and emotional distress due to disease status’, ‘social barriers experienced due to disease status’, ‘emotional distress and concerns due to patients’ physical stature’ and ‘decisive moments of breakdown’. Theme two was ‘medication-related challenges’, sub-themes identified were ‘adverse effects of injection’, ‘adaptation challenges’ and ‘negative physical and psychological effects of pills’. Theme three was ‘lack of support and resources’, and sub-themes identified were ‘lack of social support and family distancing’, ‘lack of resources’ and ‘lack of care at the hospital’. The article discusses the novelty of this study, where it attempts to understand the psychosocial issues of DR-TB patients along with their caretakers, and it also attempts to coin different barriers and challenges they face. Under discussion, various suggestions concerning the themes that have emerged were put forth like ‘acute phases of hopelessness and the need for a unique approach (e.g. crisis response)’, ‘lack of supportive care and social support for patients and caregivers (caregivers’ network and enabling support groups)’, ‘physical appearance driven anxiety and distress (continual communication regarding patient’s health progress)’, ‘lack of resources as a significant barrier (insurance coverage for them and their careers)’, ‘adverse physical and psychological effects of DR-TB injections and pills (improving pill planning and prescription strategies)’. A significant research limitation was that patients without any caregivers and child, and adolescent patients’ perspectives could differ. Therefore, studies are needed in these groups of DR-TB patients. The strengths of this study are that it adds the perception of caregivers of DR-TB patients, the mutual burden, and the psychosocial challenges they face. The study depicts that, despite having finished treatment with better adherence, it emphasises the significant psychosocial difficulties and challenges that DR-TB patients and their caregivers face. COMMENTS India has a high burden of DR-TB cases, accounting for 1/3rd of patients in the world.[1] A new shorter regimen for DR-TB had a 60% treatment success rate, 11% fatality rate, and a 13% loss to follow-up-rate.[2] Patients with DR-TB need treatment regimens with higher rates of side effects and extended durations. There are two different DR-TB therapy regimens: one that lasts 20 months and the other that lasts 9–12 months.[3] Therefore, DR-TB patients face enormous challenges with the longer duration of treatment and adverse effects. DR-TB patients’ psychosocial problems, treatment adherence, and outcomes are correlated and bi-directional. Therefore, this article rightly addresses the need to explore psychosocial barriers and challenges faced by DR-TB patients under treatment and their caregivers. The study design, materials and method, used were appropriate, as they took ‘positively deviant’ participants who could provide better information regarding the subject. The semi-structured interview guide used was specific for DR-TB patients and caregivers. The article states that they analysed the caregivers’ interviews separately and when the emerged themes were found similar to those of patients, then common themes were generated. However, this should not have been done as the perspectives of caregivers on challenges and barriers faced by their patients could be similar. Still, the perspective of caregivers on challenges and barriers faced by themselves will differ from that of the patient. The article states that the study is in confirmation with CONSORT guidelines, whereas supplementary COREQ guidelines were stated, rightly so, however, this amount of printing error cannot be ignored. Under the discussion, the article fails to address the findings of other similar studies that have been done.[4-7] The article does not compare the results with the existing literature on the subject. Furthermore, the article states that it has attempted to understand the psychosocial problems faced by DR-TB patients which is not new as a systematic review has already been done and published in the year 2016 on it.[8] Although psychological and social issues confronted by DR-TB patients together with their caregivers could have been a new approach and the qualitative component adds novelty to the study. Under the discussion, the authors have given suggestions for each of the psychosocial barriers and challenges identified in the main themes under various sub-headings. However, some of these suggestions have already been recommended in the past and trials commenced to equip and empower DR-TB patients with regard to their treatment and quality of life.[9-11] The burden and challenges of patient’s caregivers can be explored further as it has been found as one of the determinants in effective treatment.[12] CONCLUSION The study has addressed an important issue for DR-TB patients and their caretakers during their diagnosis and treatment course. The study included participants who were exceptionally adherent to their medication (i.e., positively deviant); therefore, the findings that emerged point towards a far greater burden of psychological and social factors that challenge DR-TB patients as well as their caregivers. The most defining element in this study was ‘fear and emotional discomfort’, which patients and carers perceived and experienced in a variety of dynamic ways, which is an area with much-needed intervention. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.