Cargando…

Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa

High profile international goals have been set for the elimination of hepatitis B virus (HBV) infection as a public health threat by the year 2030. Developing and expanding equitable, accessible translational HBV research programmes that represent real-world populations are therefore an urgent prior...

Descripción completa

Detalles Bibliográficos
Autores principales: Mofokeng, Nombuyiselo, Maponga, Tongai G., van Schalkwyk, Marije, Hugo, Susan, Morobadi, Molefi Daniel, Vawda, Sabeehah, Badenhorst, Leane, van Vuuren, Cloete, van Rensburg, Christo, Preiser, Wolfgang, Taljaard, Jantjie, Wang, Su, Miller, Veronica, Wu, Dan, Tucker, Joseph D., Seeley, Janet, Goedhals, Dominique, Matthews, Philippa C.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9995934/
https://www.ncbi.nlm.nih.gov/pubmed/36911657
http://dx.doi.org/10.1016/j.jve.2023.100317
_version_ 1784902930656133120
author Mofokeng, Nombuyiselo
Maponga, Tongai G.
van Schalkwyk, Marije
Hugo, Susan
Morobadi, Molefi Daniel
Vawda, Sabeehah
Badenhorst, Leane
van Vuuren, Cloete
van Rensburg, Christo
Preiser, Wolfgang
Taljaard, Jantjie
Wang, Su
Miller, Veronica
Wu, Dan
Tucker, Joseph D.
Seeley, Janet
Goedhals, Dominique
Matthews, Philippa C.
author_facet Mofokeng, Nombuyiselo
Maponga, Tongai G.
van Schalkwyk, Marije
Hugo, Susan
Morobadi, Molefi Daniel
Vawda, Sabeehah
Badenhorst, Leane
van Vuuren, Cloete
van Rensburg, Christo
Preiser, Wolfgang
Taljaard, Jantjie
Wang, Su
Miller, Veronica
Wu, Dan
Tucker, Joseph D.
Seeley, Janet
Goedhals, Dominique
Matthews, Philippa C.
author_sort Mofokeng, Nombuyiselo
collection PubMed
description High profile international goals have been set for the elimination of hepatitis B virus (HBV) infection as a public health threat by the year 2030. Developing and expanding equitable, accessible translational HBV research programmes that represent real-world populations are therefore an urgent priority for clinical and academic communities. We present experiences and insights by an expert interdisciplinary group focusing on barriers that impede adults living with HBV infection from participating in clinical studies. Our viewpoint describes barriers we have identified through working in a variety of settings across South Africa, including lack of education and awareness, experiences of stigma and discrimination, challenges for governance and data management, and a burden of complex morbidity. Through identifying these challenges, we propose solutions and interventions, highlight new approaches, and provide a framework for future research.
format Online
Article
Text
id pubmed-9995934
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher Elsevier
record_format MEDLINE/PubMed
spelling pubmed-99959342023-03-10 Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa Mofokeng, Nombuyiselo Maponga, Tongai G. van Schalkwyk, Marije Hugo, Susan Morobadi, Molefi Daniel Vawda, Sabeehah Badenhorst, Leane van Vuuren, Cloete van Rensburg, Christo Preiser, Wolfgang Taljaard, Jantjie Wang, Su Miller, Veronica Wu, Dan Tucker, Joseph D. Seeley, Janet Goedhals, Dominique Matthews, Philippa C. J Virus Erad Viewpoint High profile international goals have been set for the elimination of hepatitis B virus (HBV) infection as a public health threat by the year 2030. Developing and expanding equitable, accessible translational HBV research programmes that represent real-world populations are therefore an urgent priority for clinical and academic communities. We present experiences and insights by an expert interdisciplinary group focusing on barriers that impede adults living with HBV infection from participating in clinical studies. Our viewpoint describes barriers we have identified through working in a variety of settings across South Africa, including lack of education and awareness, experiences of stigma and discrimination, challenges for governance and data management, and a burden of complex morbidity. Through identifying these challenges, we propose solutions and interventions, highlight new approaches, and provide a framework for future research. Elsevier 2023-02-23 /pmc/articles/PMC9995934/ /pubmed/36911657 http://dx.doi.org/10.1016/j.jve.2023.100317 Text en © 2023 Published by Elsevier Ltd. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
spellingShingle Viewpoint
Mofokeng, Nombuyiselo
Maponga, Tongai G.
van Schalkwyk, Marije
Hugo, Susan
Morobadi, Molefi Daniel
Vawda, Sabeehah
Badenhorst, Leane
van Vuuren, Cloete
van Rensburg, Christo
Preiser, Wolfgang
Taljaard, Jantjie
Wang, Su
Miller, Veronica
Wu, Dan
Tucker, Joseph D.
Seeley, Janet
Goedhals, Dominique
Matthews, Philippa C.
Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa
title Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa
title_full Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa
title_fullStr Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa
title_full_unstemmed Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa
title_short Barriers that prevent adults living with HBV infection from participating in clinical research: experience from South Africa
title_sort barriers that prevent adults living with hbv infection from participating in clinical research: experience from south africa
topic Viewpoint
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9995934/
https://www.ncbi.nlm.nih.gov/pubmed/36911657
http://dx.doi.org/10.1016/j.jve.2023.100317
work_keys_str_mv AT mofokengnombuyiselo barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT mapongatongaig barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT vanschalkwykmarije barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT hugosusan barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT morobadimolefidaniel barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT vawdasabeehah barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT badenhorstleane barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT vanvuurencloete barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT vanrensburgchristo barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT preiserwolfgang barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT taljaardjantjie barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT wangsu barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT millerveronica barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT wudan barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT tuckerjosephd barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT seeleyjanet barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT goedhalsdominique barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica
AT matthewsphilippac barriersthatpreventadultslivingwithhbvinfectionfromparticipatinginclinicalresearchexperiencefromsouthafrica