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Developing and implementing a public health co-research program for Special Olympics athletes

Individuals with intellectual and developmental disabilities are often the subject of research while rarely being included in formulating research questions, planning studies, and making decisions related to protocols and analyses. In turn, most research regarding people with intellectual and develo...

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Autores principales: Kirova, Anna-Mariya, Jakab, Tyler, Bartsch, Graham, Corazzini, Stephanie, Sokoloff, Alexis, Delahunty, Erin, Seymour, Rachel, Rubenstein, Eric
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10278300/
https://www.ncbi.nlm.nih.gov/pubmed/37337242
http://dx.doi.org/10.1186/s40900-023-00450-5
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author Kirova, Anna-Mariya
Jakab, Tyler
Bartsch, Graham
Corazzini, Stephanie
Sokoloff, Alexis
Delahunty, Erin
Seymour, Rachel
Rubenstein, Eric
author_facet Kirova, Anna-Mariya
Jakab, Tyler
Bartsch, Graham
Corazzini, Stephanie
Sokoloff, Alexis
Delahunty, Erin
Seymour, Rachel
Rubenstein, Eric
author_sort Kirova, Anna-Mariya
collection PubMed
description Individuals with intellectual and developmental disabilities are often the subject of research while rarely being included in formulating research questions, planning studies, and making decisions related to protocols and analyses. In turn, most research regarding people with intellectual and developmental disabilities is not carried out by researchers with disabilities themselves. We developed a co-research training program where individuals with intellectual and developmental disabilities were taught about research. The program was designed using best practices and existing materials resources. We recruited four participants from Special Olympics Massachusetts and conducted the training in the Fall of 2021. We evaluated the program with surveys, qualitative interviews, and tracking continued involvement of co-researchers in research projects. Participants were partners in the evaluation process. The training program was six sessions and included lessons about why research is important, how to conduct research, and an experiential learning project where co-researchers conducted a study of their coaches. The program was well received by participants, and one year later they were still involved with research projects. A co-researcher training focused on public health for Special Olympics athletes is feasible and beneficial for athletes, researchers, and Special Olympics programs. However, there are still barriers like a lack of funding and time, that need to be addressed to ensure wide program success. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-023-00450-5.
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spelling pubmed-102783002023-06-20 Developing and implementing a public health co-research program for Special Olympics athletes Kirova, Anna-Mariya Jakab, Tyler Bartsch, Graham Corazzini, Stephanie Sokoloff, Alexis Delahunty, Erin Seymour, Rachel Rubenstein, Eric Res Involv Engagem Comment Individuals with intellectual and developmental disabilities are often the subject of research while rarely being included in formulating research questions, planning studies, and making decisions related to protocols and analyses. In turn, most research regarding people with intellectual and developmental disabilities is not carried out by researchers with disabilities themselves. We developed a co-research training program where individuals with intellectual and developmental disabilities were taught about research. The program was designed using best practices and existing materials resources. We recruited four participants from Special Olympics Massachusetts and conducted the training in the Fall of 2021. We evaluated the program with surveys, qualitative interviews, and tracking continued involvement of co-researchers in research projects. Participants were partners in the evaluation process. The training program was six sessions and included lessons about why research is important, how to conduct research, and an experiential learning project where co-researchers conducted a study of their coaches. The program was well received by participants, and one year later they were still involved with research projects. A co-researcher training focused on public health for Special Olympics athletes is feasible and beneficial for athletes, researchers, and Special Olympics programs. However, there are still barriers like a lack of funding and time, that need to be addressed to ensure wide program success. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s40900-023-00450-5. BioMed Central 2023-06-19 /pmc/articles/PMC10278300/ /pubmed/37337242 http://dx.doi.org/10.1186/s40900-023-00450-5 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Comment
Kirova, Anna-Mariya
Jakab, Tyler
Bartsch, Graham
Corazzini, Stephanie
Sokoloff, Alexis
Delahunty, Erin
Seymour, Rachel
Rubenstein, Eric
Developing and implementing a public health co-research program for Special Olympics athletes
title Developing and implementing a public health co-research program for Special Olympics athletes
title_full Developing and implementing a public health co-research program for Special Olympics athletes
title_fullStr Developing and implementing a public health co-research program for Special Olympics athletes
title_full_unstemmed Developing and implementing a public health co-research program for Special Olympics athletes
title_short Developing and implementing a public health co-research program for Special Olympics athletes
title_sort developing and implementing a public health co-research program for special olympics athletes
topic Comment
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10278300/
https://www.ncbi.nlm.nih.gov/pubmed/37337242
http://dx.doi.org/10.1186/s40900-023-00450-5
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