RESUMEN
Background: One-fifth of people with drug-resistance tuberculosis (DR-TB) who were initiated on newer shorter treatment regimen (with injection) had unfavourable treatment outcomes in India as on 2020. Evidence on self-driven solutions and resilience adapted by people with DR-TB (PwDR-TB) towards their multi-dimensional disease and treatment challenges are scarce globally, which we aimed to understand. Methods: In this qualitative study using positive deviance framework, we conducted semi-structured in-depth interviews among consenting adult PwDR-TB (7 women, 13 men) who completed shorter treatment regimen (including injections) with maximum treatment adherence. The study was conducted in the southern districts of Bengaluru and Hyderabad, India between June 2020 and December 2022. Caregivers (14 women, 6 men) and health providers (8 men, 2 women) of PwDR-TB were also interviewed. Interviews were conducted in local language (Kannada, Tamil, Telugu, Urdu and Hindi) and inquired about practices, behaviours, experiences, perceptions and attributes which enabled maximum adherence and resilience of PwDR-TB. Interviews were audio recorded, transcribed, and translated to English and coded for thematic analysis using inductive approach. Findings: Distinctive themes explanatory of the self-driven solutions and resilience exhibited by PwDR-TB and their caregivers were identified: (i) Self-adaptation towards the biological consequences of drugs, by personalised nutritional and adjuvant practices, which helped to improve drug ingestion and therapeutic effects. Also home remedies and self-plans for ameliorating injection pain. (ii) Perceptual adaptation towards drugs aversion and fatigue, by their mind diversion practices, routinisation and normalisation of drug intake process. and constant reinforcement and re-interpretation of bodily signs of disease recovery (iii) Family caregivers intense and participatory care for PwDR-TB, by aiding their essential life activities and ensuring survival, learning and fulfilling special nutritional needs and goal oriented actions to aid drug intake (iv) Health care providers care, marked by swift and timely risk mitigation of side-effects and crisis response (v) Acquired self-efficacy of PwDR-TB, by their decisive family concerns resulting in attitudinal change. Also being sensitised on the detrimental consequences of disease and being motivated through positive examples. Interpretation: Synthesised findings on self-driven solutions and resilience towards the multi-dimensional DR-TB challenges provides opportunity for developing and testing new interventions for its effectiveness in DR-TB care settings globally. Designing and testing personalised cognitive interventions for PwDR-TB: to inculcate attitudinal change and self-efficacy towards medication, developing cognitive reinforcements to address the perception burden of treatment, skill building and mainstreaming the role of family caregivers as therapeutic partners of PwDR-TB, curating self-adaptive behaviours and practices of PwDR-TB to normalise their drug consumptions experiences could be the way forward in building resilience towards DR-TB. Funding: United States Agency for International Development (USAID) through Karnataka Health Promotion Trust (KHPT), Bengaluru, India.
RESUMEN
Qualitative insights regarding psycho-social barriers and challenges experienced by drug-resistant tuberculosis (DR-TB) patients and their caregivers are understudied in India. We conducted a qualitative study using semi-structured qualitative interviews among treatment-completed DR-TB patients (n = 20) and caregivers (n = 20) in Bengaluru and Hyderabad districts, which represented two different socio-cultural settings in South India. Criterion sampling was used for recruiting the eligible participants who completed treatment with adherence. "Emotional issues and social barriers" were identified to represent a major challenge for patients and caregivers, which occurred acutely after disease diagnosis, characterized by fear and emotional distress due to their perceived loss of life prospects, severity of symptoms, discomfort, and disease denial. Medication intolerance, chronic symptoms, lack of visible signs of treatment progress, loss of weight, and physical concerns caused subsequent fear and distress during the treatment phases for patients along with experiences of stigma. External triggers generated "decisive moments" of hopelessness and life-ending thoughts for patients at the diagnosis and early treatment phase. Medication related challenges included the perceived burden and power of pills which caused emotional distress for patients and intolerance towards caregivers. Pill burden was found as consequential as the side effects of injections. Challenges related to lack of support were another major theme, in which caregivers lacked resources for treatment support and nutrition. Throughout treatment, caregivers and patients expressed concern about a lack of supportive care from family members, sympathy, and intangible social support. Challenges during hospital admission in terms of lack of privacy, quality of services, individual attention, and empathy from health care workers were reported by patients and caregivers. Despite better adherence, DR-TB patients and caregivers experienced considerable emotional and social consequences. Differentiating DR-TB patients and caregivers' issues at different stages of diagnosis and treatment could help improve patient-centered outcomes in India and other high-burden nations.
RESUMEN
BACKGROUND: Provision of Anti-Retroviral Therapy (ART) and Opioid Substitution Therapy (OST) are important components of the targeted intervention (TI) programme for people who inject drugs (PWID). Homeless HIV positive PWIDs in Delhi is a key population experiencing gaps in uptake of these services, especially the ART uptake which is reportedly far from 90%, UNAIDS' 90-90-90 target to end the AIDS epidemic. OBJECTIVE: To assess the gaps and barriers in accessing the ART and OST services uptake among HIV positive homeless PWID in Delhi and to explore experiences and perspectives of the PWIDs and service providers. METHODOLOGY: We used a convergent parallel mixed methods design which included a cross-sectional quantitative survey and a qualitative study. Two hundred thirty five homeless HIV positive PWID were interviewed and in-depth interviews were conducted with five PWIDs and nine health providers. RESULTS: While only 12% of PWIDs were on ART, 80% were availing OST services. The top individual, health system related and structural barriers for ART service access were insufficient and incorrect knowledge (63%), long waiting time (86%) and lack of family support (44%) respectively. Inconvenient timings, stringent registration requirements and negative attitude of health providers were expressed as major barriers of accessing ART services during the interviews while these were not a concern in OST services. Homelessness, poverty, stigma were common barriers for both services. Integrated, 'single window' service and provision of additional support like nutrition and shelter were suggested as measures to improve access by both health providers and the PWIDs themselves. CONCLUSION: There is an urgent need for structural and health systems changes to improve access to ART and OST services. These include integrated service delivery, flexibility in timing of the centers, accelerated ART initiation, simplification of bureaucratic procedures, nutritional and social support to all homeless HIV positive PWIDs.
