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

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...

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Autores principales: Furin, Jennifer, Loveday, Marian, Hlangu, Sindisiwe, Dickson-Hall, Lindy, le Roux, Sacha, Nicol, Mark, Cox, Helen
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6969445/
https://www.ncbi.nlm.nih.gov/pubmed/31952494
http://dx.doi.org/10.1186/s12889-019-8035-z
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author Furin, Jennifer
Loveday, Marian
Hlangu, Sindisiwe
Dickson-Hall, Lindy
le Roux, Sacha
Nicol, Mark
Cox, Helen
author_facet Furin, Jennifer
Loveday, Marian
Hlangu, Sindisiwe
Dickson-Hall, Lindy
le Roux, Sacha
Nicol, Mark
Cox, Helen
author_sort Furin, Jennifer
collection PubMed
description 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.
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spelling pubmed-69694452020-01-27 “A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa Furin, Jennifer Loveday, Marian Hlangu, Sindisiwe Dickson-Hall, Lindy le Roux, Sacha Nicol, Mark Cox, Helen BMC Public Health Research Article 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. BioMed Central 2020-01-17 /pmc/articles/PMC6969445/ /pubmed/31952494 http://dx.doi.org/10.1186/s12889-019-8035-z Text en © The Author(s). 2020 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Furin, Jennifer
Loveday, Marian
Hlangu, Sindisiwe
Dickson-Hall, Lindy
le Roux, Sacha
Nicol, Mark
Cox, Helen
“A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa
title “A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa
title_full “A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa
title_fullStr “A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa
title_full_unstemmed “A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa
title_short “A very humiliating illness”: a qualitative study of patient-centered Care for Rifampicin-Resistant Tuberculosis in South Africa
title_sort “a very humiliating illness”: a qualitative study of patient-centered care for rifampicin-resistant tuberculosis in south africa
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6969445/
https://www.ncbi.nlm.nih.gov/pubmed/31952494
http://dx.doi.org/10.1186/s12889-019-8035-z
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