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

Jennifer Furin, Marian Loveday, Sindisiwe Hlangu, Lindy Dickson-Hall, Sacha le Roux, Mark Nicol, Helen Cox

Research output: Contribution to journalArticle

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.

Original languageEnglish
Article number76
JournalBMC Public Health
Volume20
Issue number1
DOIs
Publication statusPublished - 17 Jan 2020

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