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Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations

BACKGROUND: Involvement of vulnerable populations in research is critical to inform the generalisability of evidence-based medicine to all groups of the population. OBJECTIVE: In this communication, we reflect on our previous research, and that of other authors, to identify and explore key ethical a...

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Autores principales: Jones, Annabel, Morgan-Jones, Philippa, Busse, Monica, Shepherd, Victoria, Wood, Fiona
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7812104/
https://www.ncbi.nlm.nih.gov/pubmed/33441358
http://dx.doi.org/10.1136/bmjopen-2020-041869
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author Jones, Annabel
Morgan-Jones, Philippa
Busse, Monica
Shepherd, Victoria
Wood, Fiona
author_facet Jones, Annabel
Morgan-Jones, Philippa
Busse, Monica
Shepherd, Victoria
Wood, Fiona
author_sort Jones, Annabel
collection PubMed
description BACKGROUND: Involvement of vulnerable populations in research is critical to inform the generalisability of evidence-based medicine to all groups of the population. OBJECTIVE: In this communication, we reflect on our previous research, and that of other authors, to identify and explore key ethical and methodological considerations. DISCUSSION: Focus groups are a widely implemented qualitative methodology, but their use, particularly in vulnerable neurodegenerative disease populations, is not straightforward. Although the risk of harm is generally low in focus group research, neurodegenerative disease populations are particularly vulnerable to issues relating to comprehension and their capacity to consent. Physical and cognitive impairments may also affect social interactions among participants and therefore impact data collection and analyses. CONCLUSION: We offer a number of ethical and methodological recommendations to facilitate the processes of recruitment and data collection when conducting focus groups with neurodegenerative disease populations.
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spelling pubmed-78121042021-01-25 Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations Jones, Annabel Morgan-Jones, Philippa Busse, Monica Shepherd, Victoria Wood, Fiona BMJ Open Ethics BACKGROUND: Involvement of vulnerable populations in research is critical to inform the generalisability of evidence-based medicine to all groups of the population. OBJECTIVE: In this communication, we reflect on our previous research, and that of other authors, to identify and explore key ethical and methodological considerations. DISCUSSION: Focus groups are a widely implemented qualitative methodology, but their use, particularly in vulnerable neurodegenerative disease populations, is not straightforward. Although the risk of harm is generally low in focus group research, neurodegenerative disease populations are particularly vulnerable to issues relating to comprehension and their capacity to consent. Physical and cognitive impairments may also affect social interactions among participants and therefore impact data collection and analyses. CONCLUSION: We offer a number of ethical and methodological recommendations to facilitate the processes of recruitment and data collection when conducting focus groups with neurodegenerative disease populations. BMJ Publishing Group 2021-01-13 /pmc/articles/PMC7812104/ /pubmed/33441358 http://dx.doi.org/10.1136/bmjopen-2020-041869 Text en © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ http://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Ethics
Jones, Annabel
Morgan-Jones, Philippa
Busse, Monica
Shepherd, Victoria
Wood, Fiona
Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations
title Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations
title_full Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations
title_fullStr Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations
title_full_unstemmed Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations
title_short Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations
title_sort conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations
topic Ethics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7812104/
https://www.ncbi.nlm.nih.gov/pubmed/33441358
http://dx.doi.org/10.1136/bmjopen-2020-041869
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