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Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers

BACKGROUND: Low-participation of culturally and linguistically diverse (CALD) patients in medical research remains a problem in migrant and refugee destination countries such as Australia. The aims of this study were to explore i) CALD persons’ perceptions and experiences of the medical system and m...

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Autores principales: Woodward-Kron, Robyn, Hughson, Jo-anne, Parker, Anna, Bresin, Agnese, Hajek, John, Knoch, Ute, Phan, Tuong Dien, Story, David
Formato: Online Artículo Texto
Lenguaje:English
Publicado: PAGEPress Publications, Pavia, Italy 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4856870/
https://www.ncbi.nlm.nih.gov/pubmed/27190978
http://dx.doi.org/10.4081/jphr.2016.667
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author Woodward-Kron, Robyn
Hughson, Jo-anne
Parker, Anna
Bresin, Agnese
Hajek, John
Knoch, Ute
Phan, Tuong Dien
Story, David
author_facet Woodward-Kron, Robyn
Hughson, Jo-anne
Parker, Anna
Bresin, Agnese
Hajek, John
Knoch, Ute
Phan, Tuong Dien
Story, David
author_sort Woodward-Kron, Robyn
collection PubMed
description BACKGROUND: Low-participation of culturally and linguistically diverse (CALD) patients in medical research remains a problem in migrant and refugee destination countries such as Australia. The aims of this study were to explore i) CALD persons’ perceptions and experiences of the medical system and medical research, in this case, older Italian Australians; and ii) the views of research professionals on CALD patient participation in medical research. DESIGN AND METHODS: A qualitative study was conducted in Melbourne, Australia, in 2015 utilising in-depth interviews and focus groups with four stakeholder groups: older Italian Australians (n=21); adult children of older Italian Australians (n=10); hospital Human Research Ethics Committee administrators (n=4); and clinical researchers (n=4). The data were analysed for content and thematic analysis. RESULTS: Themes for the CALD and family group were getting by in medical interactions; receptivity to medical research: testing the waters; and, receptivity to technology for support: passive versus active. Themes for the researcher and HREC groups about CALD patient participation in research were: exclusion; cultural factors; and e-consent. CONCLUSIONS: Our findings from four stakeholder perspectives and experiences confirm that there were considerable cultural, linguistic, and resourcing barriers hindering the participation of older Italian-Australians in medical research. Furthermore, our findings showed that in this study setting there were few enabling strategies in place to address these barriers despite the national ethics guidelines for equitable participation in research. The findings informed the creation of a multimedia tool whose purpose is to address and improve representation of CALD groups in clinical research.
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spelling pubmed-48568702016-05-17 Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers Woodward-Kron, Robyn Hughson, Jo-anne Parker, Anna Bresin, Agnese Hajek, John Knoch, Ute Phan, Tuong Dien Story, David J Public Health Res Article BACKGROUND: Low-participation of culturally and linguistically diverse (CALD) patients in medical research remains a problem in migrant and refugee destination countries such as Australia. The aims of this study were to explore i) CALD persons’ perceptions and experiences of the medical system and medical research, in this case, older Italian Australians; and ii) the views of research professionals on CALD patient participation in medical research. DESIGN AND METHODS: A qualitative study was conducted in Melbourne, Australia, in 2015 utilising in-depth interviews and focus groups with four stakeholder groups: older Italian Australians (n=21); adult children of older Italian Australians (n=10); hospital Human Research Ethics Committee administrators (n=4); and clinical researchers (n=4). The data were analysed for content and thematic analysis. RESULTS: Themes for the CALD and family group were getting by in medical interactions; receptivity to medical research: testing the waters; and, receptivity to technology for support: passive versus active. Themes for the researcher and HREC groups about CALD patient participation in research were: exclusion; cultural factors; and e-consent. CONCLUSIONS: Our findings from four stakeholder perspectives and experiences confirm that there were considerable cultural, linguistic, and resourcing barriers hindering the participation of older Italian-Australians in medical research. Furthermore, our findings showed that in this study setting there were few enabling strategies in place to address these barriers despite the national ethics guidelines for equitable participation in research. The findings informed the creation of a multimedia tool whose purpose is to address and improve representation of CALD groups in clinical research. PAGEPress Publications, Pavia, Italy 2016-04-26 /pmc/articles/PMC4856870/ /pubmed/27190978 http://dx.doi.org/10.4081/jphr.2016.667 Text en ©Copyright R. Woodward-Kron et al. http://creativecommons.org/licenses/by-nc/3.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/3.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Article
Woodward-Kron, Robyn
Hughson, Jo-anne
Parker, Anna
Bresin, Agnese
Hajek, John
Knoch, Ute
Phan, Tuong Dien
Story, David
Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers
title Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers
title_full Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers
title_fullStr Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers
title_full_unstemmed Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers
title_short Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers
title_sort culturally and linguistically diverse populations in medical research: perceptions and experiences of older italians, their families, ethics administrators and researchers
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4856870/
https://www.ncbi.nlm.nih.gov/pubmed/27190978
http://dx.doi.org/10.4081/jphr.2016.667
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