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

Jones, Annabel, Morgan-Jones, Philippa ORCID: https://orcid.org/0000-0003-2240-691X, Busse, Monica ORCID: https://orcid.org/0000-0002-5331-5909, Shepherd, Victoria ORCID: https://orcid.org/0000-0002-7687-0817 and Wood, Fiona ORCID: https://orcid.org/0000-0001-7397-4074 2021. Conducting focus groups in neurodegenerative disease populations: ethical and methodological considerations. BMJ Open 11 (1) , e041869. 10.1136/bmjopen-2020-041869

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Abstract

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.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Engineering Medicine Centre for Trials Research (CNTRR)
Additional Information:	This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0)
Publisher:	BMJ Publishing Group
ISSN:	2044-6055
Date of First Compliant Deposit:	12 January 2021
Date of Acceptance:	14 December 2020
Last Modified:	08 Aug 2023 15:32
URI:	https://orca.cardiff.ac.uk/id/eprint/137607

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