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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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2020
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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. |
format | Online Article Text |
id | pubmed-6969445 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
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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