“A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa

Abstract

Background: Patient-centered care is pillar 1 of the "End TB" strategy, but little has been documented in the literature about what this means for people living with rifampicin-resistant (RR-TB). Optimizing care for such individuals requires a better understanding of the challenges they face and the support they need. Methods: A qualitative study was done among persons living with RR-TB and members of their support network. A purposive sample was selected from a larger study population and open-ended interviews were conducted using a semi-standard interview guide. Interviews were recorded and transcribed and the content analyzed using an iterative thematic analysis based in grounded theory. Results: 16 participants were interviewed from three different provinces. Four distinct periods in which support was needed were identified: 1) pre-diagnosis; 2) pre-treatment; 3) treatment; and 4) post-treatment. Challenges common in all four periods included: socioeconomic issues, centralized care, and the need for better counseling at multiple levels. Conclusions: Beyond being a "very humiliating illness", RR-TB robs people of their physical, social, economic, psychological, and emotional well-being far beyond the period when treatment is being administered. Efforts to tackle these issues are as important as new drugs and diagnostics in the fight against TB.

Dynamic needs and challenges of people with drug-resistant tuberculosis and HIV in South Africa: a qualitative study

“…We did not capture experiences accessing bedaquiline, ending DRTB treatment, or returning to HIV care, which might reveal new or persistent challenges. 5 The wide data collection period and group-based inquiry also did not support triangulation with adherence data beyond admissions of compromised pill-taking that were shared in some focus groups. Rather, the study provides a rich basis from which patients’ transitions through DRTB and HIV treatment might be better addressed.…”

“…This study chronologises patients’ difficulties and coping actions over the course of DRTB treatment, substantiating a broader body of patient-centred tuberculosis research. 2 , 5 – 7 , 17 Findings are uniquely rooted in the context of new, all-oral regimens for DRTB, and point to the limits of technical advancements in allaying patients’ challenges. A theoretical framework of chronic illness led us to discern the disruptive potential of critical events along the DRTB care cascade and recommend responsive interventions based on situations that people with DRTB found to be life-altering and ameliorative ( figure 2 ).…”

“… 13 , 15 Data were then entered into NVivo 12 (QSR International) for comprehensive thematic analysis. 5 , 16 , 17 A coding scheme was derived from focus group topics, leaving space for inductive analysis; memoing enabled higher-level comparisons. Codes were categorised under broader concepts, using discursive techniques to identify and question patterns, assess context, and achieve conceptual clarity.…”

“…Studies characterising challenges in DRTB treatment offer cross-sectional snapshots but seldom examine changes over time that would inform patient-centred care. 2 , 5 – 7 To address these gaps and to guide interventions, we describe longitudinal experiences in DRTB care and treatment among patients receiving new regimens concurrently with antiretroviral treatment.…”

Building resilience needs to be central to treating drug-resistant tuberculosis

“…However, together with increasing discourse around providing more patient-centred care in tuberculosis, 1 there is a growing body of literature describing the experiences of individuals going through DRTB treatment. 2,3 In The Lancet Global Health, Amrita Daftary and colleagues 4 add to this literature by describing distinct stages through DRTB diagnosis and treatment from the point of view of patients with DRTB and HIV in KwaZulu-Natal province, South Africa. The study emphasises that despite improvements in treatment, including shorter, all-oral regimens that include bedaquiline, 5 DRTB treatment remains lengthy, difficult, and life-changing for individuals.…”