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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...

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Autores principales: Baggio, Stéphanie, Gonçalves, Leonel, Heller, Patrick, Wolff, Hans, Gétaz, Laurent
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2023
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.
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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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