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Refusal to participate in research among hard-to-reach populations: The case of detained persons
Providing insights on refusal to participate in research is critical to achieve a better understanding of the non-response bias. Little is known on people who refused to participate, especially in hard-to-reach populations such as detained persons. This study investigated the potential non-response...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9983841/ https://www.ncbi.nlm.nih.gov/pubmed/36867614 http://dx.doi.org/10.1371/journal.pone.0282083 |
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author | Baggio, Stéphanie Gonçalves, Leonel Heller, Patrick Wolff, Hans Gétaz, Laurent |
author_facet | Baggio, Stéphanie Gonçalves, Leonel Heller, Patrick Wolff, Hans Gétaz, Laurent |
author_sort | Baggio, Stéphanie |
collection | PubMed |
description | Providing insights on refusal to participate in research is critical to achieve a better understanding of the non-response bias. Little is known on people who refused to participate, especially in hard-to-reach populations such as detained persons. This study investigated the potential non-response bias among detained persons, comparing participants who accepted or refused to sign a one-time general informed consent. We used data collected in a cross-sectional study primary designed to evaluate a one-time general informed consent for research. A total of 190 participants were included in the study (response rate = 84.7%). The main outcome was the acceptance to sign the informed consent, used as a proxy to evaluate non-response. We collected sociodemographic variables, health literacy, and self-reported clinical information. A total of 83.2% of the participants signed the informed consent. In the multivariable model after lasso selection and according to the relative bias, the most important predictors were the level of education (OR = 2.13, bias = 20.7%), health insurance status (OR = 2.04, bias = 7.8%), need of another study language (OR = 0.21, bias = 39.4%), health literacy (OR = 2.20, bias = 10.0%), and region of origin (not included in the lasso regression model, bias = 9.2%). Clinical characteristics were not significantly associated with the main outcome and had low relative biases (≤ 2.7%). Refusers were more likely to have social vulnerabilities than consenters, but clinical vulnerabilities were similar in both groups. The non-response bias probably occurred in this prison population. Therefore, efforts should be made to reach this vulnerable population, improve participation in research, and ensure a fair and equitable distribution of research benefits. |
format | Online Article Text |
id | pubmed-9983841 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-99838412023-03-04 Refusal to participate in research among hard-to-reach populations: The case of detained persons Baggio, Stéphanie Gonçalves, Leonel Heller, Patrick Wolff, Hans Gétaz, Laurent PLoS One Research Article Providing insights on refusal to participate in research is critical to achieve a better understanding of the non-response bias. Little is known on people who refused to participate, especially in hard-to-reach populations such as detained persons. This study investigated the potential non-response bias among detained persons, comparing participants who accepted or refused to sign a one-time general informed consent. We used data collected in a cross-sectional study primary designed to evaluate a one-time general informed consent for research. A total of 190 participants were included in the study (response rate = 84.7%). The main outcome was the acceptance to sign the informed consent, used as a proxy to evaluate non-response. We collected sociodemographic variables, health literacy, and self-reported clinical information. A total of 83.2% of the participants signed the informed consent. In the multivariable model after lasso selection and according to the relative bias, the most important predictors were the level of education (OR = 2.13, bias = 20.7%), health insurance status (OR = 2.04, bias = 7.8%), need of another study language (OR = 0.21, bias = 39.4%), health literacy (OR = 2.20, bias = 10.0%), and region of origin (not included in the lasso regression model, bias = 9.2%). Clinical characteristics were not significantly associated with the main outcome and had low relative biases (≤ 2.7%). Refusers were more likely to have social vulnerabilities than consenters, but clinical vulnerabilities were similar in both groups. The non-response bias probably occurred in this prison population. Therefore, efforts should be made to reach this vulnerable population, improve participation in research, and ensure a fair and equitable distribution of research benefits. Public Library of Science 2023-03-03 /pmc/articles/PMC9983841/ /pubmed/36867614 http://dx.doi.org/10.1371/journal.pone.0282083 Text en © 2023 Baggio et al https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. |
spellingShingle | Research Article Baggio, Stéphanie Gonçalves, Leonel Heller, Patrick Wolff, Hans Gétaz, Laurent Refusal to participate in research among hard-to-reach populations: The case of detained persons |
title | Refusal to participate in research among hard-to-reach populations: The case of detained persons |
title_full | Refusal to participate in research among hard-to-reach populations: The case of detained persons |
title_fullStr | Refusal to participate in research among hard-to-reach populations: The case of detained persons |
title_full_unstemmed | Refusal to participate in research among hard-to-reach populations: The case of detained persons |
title_short | Refusal to participate in research among hard-to-reach populations: The case of detained persons |
title_sort | refusal to participate in research among hard-to-reach populations: the case of detained persons |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9983841/ https://www.ncbi.nlm.nih.gov/pubmed/36867614 http://dx.doi.org/10.1371/journal.pone.0282083 |
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